POPULARITY
This Little Light of Mine This Little Light of Minea sermon by Rev. J. Christy Ramsey DOWNLOAD A LIVE RECORDING Audio from worship at the 10 AM Worship Service December 29, 2024at St. Peter’s Episcopal Church in Carson Cityedited from a flawless transcription made by edigitaltranscriptions all errors are mine. John 1:1-18 Sermons also available free on iTunes Akron, Ohio, my hometown, has a Main Street that follows the river. It was a river, and then it was a canal, and then it was road. Then came a flood, and then became a river again because you’ll have that. Goes through – Main Street goes through the lowest part of town because that’s where the river was. That’s where commerce was. That’s where the canal was. And so Main Street goes right like this all the way through town, and it’s the lowest part of town. Over here we have Goodyear Heights. And it’s high. It goes right up. It’s like in the middle of the valley. Goodyear Heights is over here. That’s where the factories are. That’s where the rubber was made, the smokestacks, the work crews, all are up here. And it’s high. It is high up. And in the space of about a mile or two, 10 blocks, you can see it. It goes down to Main Street, and then it goes up to the outside. The outside is West Hill. West Hill’s on the other side of Main Street. Market connects the two. You could, up at West Hill, you can see, and see the whole town. West Hill was where all the rich people lived, the factory owners, the management, because, you know, smoke was all over there, and in the valley it didn’t get up to West Hill. So that’s where West Hill was. Now, my family, my grandma, grandpa, and my brother, my uncle, good people, they were the factory people. They lived over here on the East Side, on Goodyear Heights. And over here is where we moved on up, you know, like that song, “Movin’ On Up” to the West Side. So we moved over here. So we were constantly going from the West Hill down the valley on Market. [Indiscernible] to go visit the family and connect up in church and all that. And so we did that a lot. At one time, I don’t know, late ‘60s probably, we were just at the crest of West Hill where we could see the entire traffic of Akron. We could see Main Street going along the canal. We could see Market Street. And Market, busy, busy throughfare. And I remember one day we were at the crest of the hill, looking down, and we stopped. We pulled over to the side of the road. And I looked, and all through Market Street, 10, 20 blocks, down to Main Street and back up, traffic was frozen. Everything was moved up to the side of the road and stopped. I thought, well, that’s odd. But then I looked, and I saw the flashing lights of a fire engine coming down Market Street. And everybody had stopped and got out of the way and made way for those flashing lights. Fast-forward 30 years, and some of you here know what that’s like. You know, you turn around, suddenly it’s 30 years later? Thirty years later I’m driving those flashing lights on the fire engine, faking it till I make it because no one else would get in the seat, so I did. I’m driving. And I’m learning about flashing lights and about fire department. They tell me, you know, you’re not allowed to go through red lights in a fire truck in Ohio. It’s against the law. You know you don’t have the right of way in Ohio with the flashing lights and sirens. All that is, is a request for the right of way. All that light and shining big red truck is just saying, please, please let us go by. It’s just please, it’s just a request. And we are responsible as firefighters to be driving with due regard as opposed to the rest of the people that have reasonable care. They just have to be reasonable. We’ve got to have due regard. And so they don’t have to get out of the way. They can just go on with their life. They can ignore the light. You know, that light says someone’s in trouble. Someone needs help now. Could you move out of the way? Could you stop just a moment thinking of yourself and of where you’re going and what you need to do? Can you stop, give way, so somebody else could get the help they need? It’s just an ask. And I was new guy there, even though I was older than most of those guys. Oh, that was not – they were very kind to me, you know. But, yeah, on the training events, you know, where they did training, they assigned me the role of “guy who died.” And so they would put me out in a field, and they’d come rescue me so I could just, you know, relax, kind of chillin’. So, but, you know, I try to measure my questions. You’ve been in a new job, you don’t ask every question the first day. I mean, that’s just annoying. You know, you just try to get what you need to get through the day. But there was this one thing, right here in the firehouse garage, right back here, you know, seven feet up, or eight, I don’t know, right here. There was, you know, one of those old metal box light switches like you’ve got in a garage. It was rusty. You remember those things? The conduit came down, it wasn’t pretty. And it was a switch, and there was this old, yellow, brown, moldy paper curled up over it, and you could just make out it said this, in big block letters: “DO NOT USE.” Don’t you want to? Don’t you want to? So I asked one of the old guys, I said, “Hey, what is that? Roger, Roger, what’s with that switch?” He goes, “Oh, that switch. That switch turns every traffic light in town red.” I go, oh. “But we don’t use that anymore.” Yeah, yeah, I saw the sign, yeah. He goes, “Yeah, the right turn on red, nobody stops anymore.” No one follows the lights. They just keep moving. Christ the light of the world came into the world. And what does light do? Light shows you there’s other people beside yourself. Light can show you, reveal that there’s more people than just you here. And sometimes, yes, sometimes those people need help that you don’t need, but they need. You know, when I think back at that time in Akron, that really impressed me, to see all the traffic in the city stopped because some stranger somewhere was in trouble, and everyone agreed that that traffic mattered. Not all traffic mattered. That traffic mattered because they needed help. And because they were in trouble, and because they were hurting, we could step by and allow them to get the help they need. I had a hard time with the sermon today because you know I’m going to be political. You know what the difference between political is for – political is other people. When it affects me, that’s morality. That’s important. When it affects other people, well, that’s politics. I don’t have to worry about that. Don’t talk or bother me about it. I only want to talk about me, me, me. That’s morality. That’s right and wrong. Did you know that fire trucks and fire engines and fire departments used to be politics? Fire insurance the politics in that. Because you see, back in the day, I know it’s hard to imagine, but see if you can wrap your heads around this concept, that lifesaving care of the fire department was dependent on insurance companies. I know, who would have thought such a thing? If you did not have insurance, your house burned down. You could die. Your possessions were gone. If you didn’t have any a fire insurance mark. Such a thing shouldn’t exist. If you go to some old fire departments, maybe even here in Carson, you can see what they called fire insurance marks, a metal plaque. What they were, they were these big metal plates, usually some kind of star shape, was fastened on the front of the house displaying which insurance company the fire department covered for this house. And if you didn’t pay your money, you didn’t get signed up during open enrollment, had a pre-existing conditions, you can’t pay the fire department at the fire. They’ll come for the fire, would put out your neighbor’s fire that had insurance, but you just burned down. You could be out there crying, offering to pay. No. No, you didn’t buy the insurance. You just burned down. That’s the way it is. That’s the way it is. That’s fair. That’s law. That’s the rules. That’s the way it is. Back then there’s no other way to imagine. Luckily, we thought that was silly. We thought that was immoral. We thought people that were in trouble, people that were going to go bankrupt, people that were facing financial ruin from fire’s destruction, we think, no, that will not be dependent on whether or not they paid their insurance premium. They’re our neighbors everybody here needs to be safe, regardless, so their house doesn’t burning down from a neighbors fire, or if they’re not safe, at least there’s help on the way. And we’re not going to check the insurance rolls and get preauthorized approval before we put wet stuff on the red stuff. No matter who you were, no matter what your morals were, no matter where you were in the country. When I was on the fire department, if you were in trouble, we came, and we did all we could to save your life and your property. We came with those lights that showed that there’s other people in the world that need help, that there’s other traffic that mattered. Those lights that showed that there are some people hurting. Can you please just get out of the way and let us help them? I don’t know what’s coming up. No one knows what’s coming up. But I’m going to say there’s going to be a lot of fights over light. Over light. We’re not the light. We’re not Jesus Christ. We’re not the light of the world. We bear witness to the light. We say Lord Jesus Christ comes to bring light to the world. Everyone. We’re not going to keep things in the dark because that’s not what our Christ says. Our Christ is the light of the world, not the dark of the world. So when people said, we’re not going to report maternity deaths anymore, we’re not going to report them, we’re going to put them under the dark, we’re going to [indiscernible] light of the world. We want to know about those people. We want to know if they need help. We want to turn on the light and go to them if they need it with sirens blazing, no matter who they are, [indiscernible] been, what the color of their skin is, what their nationality is, how much their income is, what their employment status. Turn on the lights. Christ is the light of the world, and we don’t abide by keeping people in the dark. I’ve only been in the ministry for 40 years. I can remember, I remember when there was a school shooting, everything stopped. We had special church services, and we had special prayers, and we knew the names, and we said the names, and we prayed for the people. We even wrote, in one church I had, to the people that were there. And I also remember that a church I was in, when someone stood up a couple years later to pray for the latest school shooting, and the leader says we can’t pray for that. That happens all the time. It’s not special. The number one killer of children in America, our country, is gun violence. Number one. If anyone from a foreign country or any other force came and killed our children like guns are, we would stop it the next day. But it’s in the dark. Did you know it’s illegal for Congress to spend money to study gun violence as a health issue? It’s not allowed. Keep that stuff in the dark. We’re not people of the dark. We’re people of the light. And we say the light comes to everyone of the world, not just some people in the world. It comes to all. It’s right there in John. We read it today. We believe it. We’re the ones that are going to come out and say, oh, no. We follow the light of the world. You’re not going to cover up all these things in the dark. We’re here to tell you. And if someone needs help, we’re at least going to get out of the way. And we might even be on that truck with lights and sirens. Get out of our way. We’re helping people that need help. And no, we’re not checking their insurance cards. That’s what it means when the light of the world comes into the world. Now, it’s not without controversy and upsets and changing this back to the way things were, you know, and that’s it. That’s the only thing that can happen. Not even from other Christians. Have you heard about Westboro Baptist Church and Fred Phelps? They’ve kind of not been around as much. But it used to be a big thing. They’d go to funerals and protest and curse people at funerals of veterans, and veterans coming home. They go to churches and demonstrate. They go everywhere and demonstrate and make things about how terrible and awful the people were who were trying to go to a funeral or trying to have a service. They went to Chicago to the Trinity UCC Church, who are unashamedly Christian and magnificently black [indiscernible], that’s their motto up there. Trinity UCC Church, a great history. And Dr. Morris was there, and Moss was there, and comes to church. I don’t know if he walked the labyrinth before church, or maybe they gave him a key, I don’t know. Could happen. But he was there early, and they were there, Westboro Baptist Church, cursing people going to church, calling them horrible awful names. Imagine, if you will, coming to church, coming to the official church, and it’s kids, it’s old ladies and good people and maybe some people that are hurting. Who knows? People come to church when they’re hurting, sure. And they get cursed at. They get damned. They get yelled at on the way. And Dr. Moss, like a lot of good pastors do in big churches, went to the choir because that’s where you go because you know the choir, they’re kind of the zealous of the church. If you had a choir, you would know this. Don’t be messin’ with the choir. You know. These are the shock troops of the church. And he went to the choir, and they had a hundred people in the choir, robed choir, hundred people. They rocked and rolled it. And he told them there’s people out there cursing our people coming into church. They’re cursing the small children, the little children. They’re yelling at the old ladies. They’re making things – they’re going through hell, and they need protection. They need help. I want you to go out there. I want you to robe up. And I want you to go out there, and I want you to sing so loud that they cannot hear those curses. I want you to sing so loud that they come in to praises and not to curses. I want you to sing “This Little Light of Mine.” This little light of mine, I’m gonna let it shine. This little light of mine, I’m gonna let it shine. This little light of mine, I’m gonna to let it shine, Let it shine, let it shine, let it shine. And they sang that song and overwhelmed the chants, and people coming to church were protected. People that were vulnerable were shielded from the hate and from the awfulness that was there. And they didn’t just do it and ignore the people that were saying the curses and the things. They offered to pray for them. And when they were turned down, you don’t get in the way of the choir. When they were turned down, the choir went ahead and prayed for them anyway, right there out in front, so it was in the midst of the cursing and the damnations and the awfulness and the racial things was prayer and praise. That’s light. That’s light. When someone’s hurting, when someone’s vulnerable, when someone’s being attacked, the people of the light are there. It could be a choir singing “This Little Light of Mine.” It could be people on the fire truck with lights and sirens. It could be people in the courtroom saying we want to know how the health of our mothers are doing and whether what we’re doing is killing them. We want to know what’s going on in our schools and our children and are they safe, and what’s going on with that? Why do they die so much, and no other nation has this trouble? Don’t sweep it under the rug. Shine the little light on it. We’re going to be light shiners. We’re going to be looking for those that are in the dark and bring them into the light and say we are here to help you. You don’t have to. You don’t have to give out the right of way. But man, it’s great when we can look out for one another and refuse to accept a city that’s on fire because someone didn’t pay their insurance, because someone didn’t have the right placard up. We said no, we’re not going to let you lose everything and die because you didn’t pay the insurance premium. You know, that’s one step away from “A nice little house you got here. Too bad if anything would happen to it.” Little protection money over there. Friends, we can be different. John says the world is different because Jesus Christ came into the world. The light came into the world, and darkness fled. Let us be the little light. Let us be the light that helps those that are in the dark and are hurting. Amen.
The LDS Church and Mormon Apologists have a common tactic where by they take a problem the critic points out, and they alter the Church’s position so as to make the faithful position indiscernible From a Fraud. And tonight on Mormonism Live, we are going to lay out approximately 20 examples of instances where this… Read More »Making Mormonism Indiscernible From a Fraud [Mormonism Live 179]
The LDS Church and Mormon Apologists have a common tactic where by they take a problem the critic points out, and they alter the Church’s position so as to make the faithful position indiscernible From a Fraud. And tonight on Mormonism Live, we are going to lay out approximately 20 examples of instances where this… Read More »Making Mormonism Indiscernible From a Fraud [Mormonism Live 179] The post Making Mormonism Indiscernible From a Fraud [Mormonism Live 179] appeared first on Mormon Discussions Podcasts - Full Lineup.
The LDS Church and Mormon Apologists have a common tactic where by they take a problem the critic points out, and they alter the Church's position so as to make the faithful position indiscernible From a Fraud. And tonight on Mormonism Live, we are going to lay out approximately 20 examples of instances where this… Read More »Making Mormonism Indiscernible From a Fraud [Mormonism Live 179]
Do you ever find yourself in a state of paralyzing burnout that can happen even when you're doing activities that you enjoy? Have you ever taken a vacation to fight the fatigue of life only to find that your post-vacation burnout-recovery state is reversed sooner and more severely than others? Do you wonder how you can reduce your burnout in a way that works and actually lasts? Then this episode is for you. Top 3 reasons to listen to this episode: Understand what autistic burnout looks like and how it differs from the burnout that might be experienced from things like work. Identify ways to provide self-care when you are experiencing autistic burnout, as well as how to incorporate sensory soothers. Learn how autistic burnout and ADHD can affect each other. Autistic burnout can be a very tiring and frustrating experience. It can have a significant impact on your productivity, relationships, and overall quality of life. Therefore, it is important to understand what it is, how it affects you, and how to deal with it effectively. By doing so, you can preserve your energy and improve your quality of life. To cope with autistic burnout, it is crucial to identify the activities or practices that help you recharge and calm your senses. By incorporating these practices into your daily routine, you can manage your energy levels and reduce the likelihood of burnout. Additional Resources: Check out Dora M. Raymaker's study on autistic burnout: “Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew: Defining Autistic Burnout." Megan's Resources for Autism and Burnout: How to Spot Autistic Burnout: https://neurodivergentinsights.com/blog/autistic-burnout-symptoms What Causes Autistic Burnout: https://neurodivergentinsights.com/blog/what-causes-autistic-burnout Autistic Burnout Recovery: https://neurodivergentinsights.com/blog/autistic-burnout-recovery Autistic Burnout Workbook: https://neurodivergentinsights.com/neurodivergentstore/p/autistic-burnout-guide-and-worksheets Transcript PATRICK CASALE: Hey everyone, you are listening to another episode of Divergent Conversations podcast. I'm your co-host, Patrick Casale. MEGAN NEFF: And I'm Dr. Neff. PATRICK CASALE: And we are going to talk about autistic burnout today, because Megan and I are both in it MEGAN NEFF: This will make for an interesting conversation [CROSSTALK 00:00:22]. PATRICK CASALE: All these conversations are and we're going to look at each other and say, "Did that feel too fucking dark again?" But in reality, I think, that's the purpose here. So, I'm in it for sure. And, you know, Megan, I'm always going to defer to you when we're talking clinically, because I think you're by far the expert when it comes to all the research that you do and all the effort that you put in. So, what is autistic burnout for all of our listeners who may not really have a good grasp of that? MEGAN NEFF: Yeah, no, that's a great question. And we should definitely add a link to this in the notes. I think her first name is Dana Ashlie? So, I think, I actually don't know her pronouns. So, I shouldn't assume her. But Dana Raymaker. They did a fantastic article that is the first to clinically define and research autistic burnout. It's a qualitative study. For people who don't know what that is, I really like qualitative studies, because it stays with people's stories. So, they interviewed like 19 autistic people. 10 of them were women, which is rare for an autistic study, foreword genderqueer or gender, not in the binary, which is, again, fantastic for a study on autism. And then, I think there were like six or seven men. So, first of all, I love a study that's representing autism from a more diverse lens, gender-speaking. And they found some themes, I realize I'm doing the very autistic, like, [INDISCERNIBLE 00:02:07] like, here's the design of the study, here's the people versus just like, what is autistic burnout? Okay, I'm zooming back out. PATRICK CASALE: It's cool, you're fun. MEGAN NEFF: So, okay, fantastic study, people should read it and there's a lot of kind of versions of it that I think it's a more accessible read than some peer-reviewed studies. So, they interviewed folks and listened for themes. That's how you do qualitative study, you listen for themes and you pull those out. Their definition of autistic burnout is, it's defined by three features, chronic exhaustion, this is emotional, this is physical, this is all the domains of exhaustion that are possible. It is a loss of skills. So, particularly, executive functioning skills, speaking skills. I know for me that is a big one, my ability to speak coherently or speak at all is really impacted by burnout. And then sensory sensitivities increase during burnout. So, those are the three core features. They define it as three months or longer. Honestly, I think just when you're defining anything clinically you have to kind of put a timeframe around it. But I'm curious about that three months mark, why that's there. And they show how it really is distinct from like, you know, culture talks a lot about occupational burnout, that this really is distinct from that. It's also distinct from depression. Now, it often leads to depression, but it is distinct from depression. I think this is such an important thing for mental health therapists to understand, because this is one of the leading pathways to suicidality for autistic people. And mental health therapists often don't understand burnout. They think it's depression, they treat it like depression, but it needs a different support, different treatment. It's also more common among high maskers. They identified that masking was one of the huge factors contributing, which makes so much sense to me. So, I think this really sets people up to be misunderstood by their therapist, if their therapist not aware of high masking autism, not aware of suicidality. Okay, I'll stop there, because I've done a bit of a little info. But yeah, that's the clinical definition of autistic burnout. PATRICK CASALE: I love this, because this is Megan and my process where we're obviously processing information very differently, and then, relaying it very differently, too. And I think it's important to have your info dumps and your perspectives, because people need to know that component too, right? Like, this is the definition, this is, clinically speaking, what this looks like. And I think so often we're you using the term burnout in society in general, right? And you mentioned it was more related, workforce-related. Like, hey, yeah, we get it, work is stressful, and it's hard, and you're overworked and underpaid, and all the things that come with it, and then that leads to burnout. But this is different. And I think main component that you mentioned really set that apart. And, I mean, we can go layer upon layer here, where it's like, what about autistic people in the workplace experiencing both like workplace burnout, autism burnout, etc. But in reality, like, it gets missed a lot. And clinically speaking, for sure, but also in friend groups and society in general. Like, the general advice around burnout is like, take a break, and like, go on vacation, or like, take a week off from work, and you'll be okay. And that is not what we're talking about here. I mean, even in that situation, a week off doesn't do it justice, but like… MEGAN NEFF: Right, right? Because then we're returning to the life that's burning us out. And that's what's different about, you know, allistic person, or neurotypical person who's experiencing burnout. They often can go through a recovery period, and then, like, bounce back. But for the autistic person, like, what I see a lot, what I've experienced a lot into the last two years when I deeply restructured my life it's like burnout, go back to my normal, but then I burnout again, because it was the normal life that was burning me out. And so, that kind of bounced back and forth between burnout, like somewhat functional burnout, functional burnout, functional… And so, there isn't that idea of like bouncing back to some idea of normal. Often, it's not the case when we're talking about autistic burnout. PATRICK CASALE: I love that you made that distinction, because that's an important one here. And for the autistic person who's experiencing autistic burnout, when you said a minimum of three months, right? I know we're talking clinically speaking, this could be going on for years, this could be going on for- MEGAN NEFF: Oh, yeah. PATRICK CASALE: …lifetimes. MEGAN NEFF: Totally, totally. PATRICK CASALE: You and I DM each other on Instagram a lot, like, and I did it before we started recording and I wish we were recording. I'm glad you kind of pointed that out. I asked you like, "Hey, how are you doing today?" And that's such a like conditioned question. You know, like, I'm supposed to introduce that way. And you were like, "I don't know. Like, I'm kind of here." Right? Like… MEGAN NEFF: Yeah, I do wish we were recording that moment of… And then, I think I told you. "No, that's a terrible question." Which is funny. That's actually how I respond to that question now. I mean, with you, I'm obviously really comfortable and will be like, "Yoh, that's a terrible question. Why you're asking me that neurotypical…." But with people who maybe aren't as an autistic culture, I will ask them to clarify like, what part of my life are you asking about? Because it's such a complex, like, what bucket in my life are we talking about when you ask me that? PATRICK CASALE: One, I love that. We are comfortable enough to just name it in our interaction. And two, I think that's such a good fucking point. And I was talking to a caller yesterday about like, fluffing up emails of like, I kind of get straight to the point, you know, ask you what I need to ask you, or give you the information that you need, or whatever, and just be done with it. But then I always find myself, like, inserting a smiley face, or a lol, or like punctuation mark to emphasize my point, or like going back and copying and pasting, like, "Hey, how are you today, I hope all is well." Then jumping into the point that I actually want to make, and even operating from that neurotypical lens and expectation of communication leads to burnout, because that [CROSSTALK 00:09:09]- MEGAN NEFF: Oh, yeah. PATRICK CASALE: …energy to constantly think about how you are responding to things and how you're being received. MEGAN NEFF: Yep, yep, it takes that extra step of, I do the same thing. I read an email, and then I go back, and I like I warm it up. It's like, okay, I need to, like, have some sort of intro. And, oh, I shouldn't just say the thing. So, yeah, that whole extra step. And it is, it's prefrontal cortex work every time we're doing that. We do it in email, we do in conversation. So, all of these things that are happening on a more intuitive level for other people that we do when we mask, you know, that's all that prefrontal cortex, which is part of why it makes so much sense to me that masking is such a significant factor when it comes to burnout. PATRICK CASALE: Yeah, just think about how much energy is being spent all the time. And then, how much is being absorbed all the time? And the differentiation there between like, once you start to get into that burnout place where you mentioned, a lot of it is sensory and overstimulation. I'll give you an example. I was hosting a retreat that I was running a couple of weeks ago in New Orleans, and you know, I'm recovering from surgery, my energy is low, my capacity is low, my distress tolerance is already low. It hit me in a moment where I was sitting in the room with 20 people, they're all socializing, they're all having fun, but I'm picking up on like every word that everyone is saying. It's starting to get louder. And then, every noise is starting to like become more and more irritating. And the temperature is getting really hot. And I'm starting to find myself like stemming and like, needing the need to just regulate myself. And I just realized in that moment, like, you're burnt out already, and you haven't even started what you're embarking upon this year. And combined surgery recovery with, you know, the autistic burnout piece of just the realization of when you're in that moment your distress tolerance skills kind of dissipate. Like, your executive functioning, like you mentioned, just starts to crumble. And that was the first time for me, and I'm going to be really vulnerable here and honest, for our listeners, like, where I realized, I am so much closer to feeling that I am disabled or unable to function. And that world that sees me does not see it, because of how much energy and effort goes into doing whatever I'm doing. And I had this major fucking grief moment and that moment where I was like, not only am I recognizing this, but I also realized like, I've created this thing in my business that am I really not capable of actually doing? That was really hard to try to process in that moment. MEGAN NEFF: It sounds like such a claustrophobic moment when you describe, like being in that moment, seeing what you had to do in front of you. And then, like the limits you are encountering in your body? PATRICK CASALE: Yeah, yeah, it was hard. And you were one of the first people I thought about messaging that to, because I was like, "I need to talk to someone about this who kind of understands what I'm talking about." MEGAN NEFF: Yeah. PATRICK CASALE: It's just such a challenge in that moment. And all you want to do is like retreat, and turn off the world, and disappear from it. And I know that that is a way to sensory soothe, too, but when you're expected to be participating, or involved, or hosting, or coaching, or whatever the responsibility is, it becomes too much. MEGAN NEFF: I know for me in those moments there's a narrative that kicks in, I should be able to push through, what is wrong with me that I can't push through? Was that part of it, too? PATRICK CASALE: Oh, absolutely. It was like, that was coming up, "You're letting your co-host and business partner down, because you're not pulling your weight. Why can't you just do the thing that you've done before? Clearly, something is wrong with you." And, "You're not able to do this thing." I like having fucking limitations placed upon what I can do. MEGAN NEFF: Oh, my gosh, right? Yeah, yeah. I mean, that's something I've thought so much about the last two or three years, is the limits and how that is for me, claustrophobic, that is the word for it. I feel claustrophobic when I encounter the limits in my body. And they feel like they shouldn't be there. Like, even when I am, like my head knows, right? Like, the social disability model. And autism is a disability, and, like, I know these things, but in those moments, like, my felt experience is still, there's something wrong with you that you can't push through. And I'm not attributing it to being disabled. I'm not attributing it to being autistic, because it's been so baked into me my whole life that you should be able to do what others can do, you should be able to push through. Why are you making this so hard? It's in your head. Like, all those narratives are still baked into my body. PATRICK CASALE: Yeah. When that's coming up for you, I mean, how are you managing that? How are you kind of getting through those moments, because they can be so painful too and so debilitating? MEGAN NEFF: Yeah, yeah. I mean, so I'll answer two ways. On one level, I think I've restructured my life to reduce those moments, right? It's interesting sometimes when I disclose this to people, people seem surprised. And I realize like, "Oh yeah, if you encountered me digitally you might not realize this." Like, I rarely leave my house. I mean, I'll go on walks. But I rarely see people, I rarely interact with people in body form, I rarely commit to things where I know I might encounter that claustrophobic, like, I've got a pretty fierce-like autonomy demand avoidance streak going on. So, one, I've structured my life, I think, to avoid those moments. Last year, I was adjunct teaching at a university leading like a clinical team once a week. And it was three hours, eight students, but I'd come home exhausted, and be so exhausted the next day. And I stopped doing that this year. So, that'd be an example of I have restructured my life to avoid those painful moments. And then, what do I do when I am encountering those moments? Like, I'm very meta in how I talk to myself. So, I'll talk myself through it of like, I'll identify the scripts that are playing, and I'll remind myself of the scripts I know that are true, but that I don't yet, like they're not living in my body yet. So, I'll do a lot of that kind of mindful naming of scripts in the way I talk to myself and remind myself. And then, I'll check in of like, what do I need? And I'm typically able to get myself some version of what I need. PATRICK CASALE: Yeah, I love that answer. And, you know, I think the ability to restructure is wonderful. And I also think that for us, we've talked about this before, it's also a privilege that we have [CROSSTALK 00:16:57]. MEGAN NEFF: Absolutely, absolutely, yeah. PATRICK CASALE: And I start thinking about, like, what if you don't have the ability to restructure and really be mindful of how your days are laid out and who you're interacting with, and when, and having control and autonomy over your situation like that? MEGAN NEFF: I'm so glad you brought the privilege piece up, because I think this is such an integral part of the autistic burnout pieces, is I'm very aware, I've been able to restructure my life because of all of my privileges. When I started my business, at that point, we were dependent on my spouse's income. So, there's economic privilege. I have a doctorate. So, there's a lot of education that gives me a lot of mobility in the professional space. So, I feel that when I work with clients in burnout, you know, whether they're in middle of graduate school, or due to socio-economic barriers, or name any of the barriers, cannot restructure their life, I think that's when I as a therapist feel the most stuck of like, there are systemic issues here, there are like neurobiological vulnerabilities here, there's very little I can say. Like, yes, we can talk about their sensory profile and we can talk about how to recover. But at the end of the day, there's these very real systemic blocks that we're running into that I have no control of and that feels claustrophobic. That's like my word of the day, apparently. I feel very stuck when I'm in that place with clients. PATRICK CASALE: Yeah, yeah. That's a great point, because there's nothing as the therapist that you can do to change that situation or their experiences, or responsibilities, even. And it's so challenging, because the system is not designed for folks who can't fit into that neurotypical model, especially, in the workforce. It's just, 99% of it just doesn't feel well-suited or set up with our needs in mind. MEGAN NEFF: And then, also, thinking about kind of supports for disabled people of like, when someone… when they're functioning, there's issues with that word, but it… Okay, when they're functioning [CROSSTALK 00:19:34]. Yeah, when their function ebbs and flows, like, we don't really have societal support for people like that. I think, individually, we don't know what to do with ourselves when we're someone who's, you know, I can go from, like, speaking on a stage to be non-speaking and laying flat on the couch the next day. Like, there's not really a template for folks of us who have such a range, because there's so many spikes, and there's so many valleys, and yeah, there's not great supports built-in, we have to kind of figure them out ourselves. Which again, if you have privilege, you're able to do that. PATRICK CASALE: Yeah, yeah. And I think that's the paradox here, right? Is like, but even with that being said, to share from our own experiences of recognizing our privilege, but also recognizing that we are currently stuck or feeling like we're in our own versions of our own autistic burnout of, we still have responsibilities to take care of, right? Like, I know, you have your kiddos, I have two businesses to run, those responsibilities don't go away. And that means that I have to get really laser-focused, and really intentional about what I'm saying yes to, and what I'm not responding to. And for the people pleasers and us, like myself, who I feel like I'm a recovering people pleaser, I feel like shutting off the world, there's this almost push pole guilt feeling of like not responding to people. And it feels good to have people in your life where you can just tell them very honestly, like, "I can't do this right now, this is all I'm capable of doing." And for me, that typically looks like turning all the lights off and laying in bed, watching something that's mindless over, and over, and over again, and not able to do anything else. But there's a cost there too, with like, partnerships, and communication, and just connection. But that's really all I can do. And coming back from New Orleans, I laid in bed for almost a week and a half. Like, if I wasn't doing one or two things a day that I had built in, that was all I could do. MEGAN NEFF: So, I'm having a new thought listening to you talk and like the picture of you in a room, lights off, week and a half, and knowing you, knowing that like, yes, Game of Thrones like is enlivening for you, but also knowing that you do thrive on relationship and connection. Okay, so here's the thought I'm having. What if the recovery from autistic burnout is depressing, like in the sense of like, isolation, darkness? Like, what a brutal Catch-22 if what we need for our bodies to recover are also things that disconnect us and like, slow our bodies down to a degree that we're then losing connection with the things that give our life meaning and joy. And yeah, I don't know. Yeah, like, can I ask how are you faring after a week and a half of like dark room recovery? PATRICK CASALE: Yeah, one, I think that's a wonderful point that you just pointed out, like, you're spot on. The things that we need may also be the things that do lead to that depressive state. So, it is that Catch-22. And you and I are both ADHD. The ADHD parts of me are like, "This is fucking terrible. Like, laying here, doing nothing, not creating, not feeling energized, like not feeling like there's a spark or something to get excited about." And the autistic part wins every time, because it's like, waving the white flag, right? Of like, I can't. Like, I can't do more than I can do right now. But to answer your question, how am I doing now? I still feel it and I can't connect the dots between what is still recovery from surgery and what is also this autistic burnout piece. I think that they're both kind of intensifying the other. Does that make sense? Like- MEGAN NEFF: Oh, absolutely. PATRICK CASALE: I just feel like if I'm typically running on like at 100% right now I feel like I'm at like 20%. So, it's pretty depleted. And then, the question becomes like, how do you replenish that to even get to a place where you can at least get through the day and the tasks that you've created for yourself? I think that's a Catch-22 of being an autistic entrepreneur, because, in New Orleans, I was saying thinking, "Okay, you're going to Costa Rica to speak at a conference." Which I actually backed out of today and I feel very proud of myself for doing, "And then you're hosting a retreat in Ireland." And I just kept thinking, "I can't do this stuff. Like, this is my world right now." And that's why I think the next month going into February, you know, I don't know when we're going to publish this episode, just for frame of reference, like, I'm going to be doing very little until I leave to go to Ireland in March because I want to conserve and like, regenerate, and replenish as much energy as I can. But here's the Catch-22 to that Megan, Ireland will then take all of it and more. So, you're playing this catch up game all the fucking time of like, how do I replenish? How do I recharge if I'm constantly depleting? MEGAN NEFF: I wonder if, not necessarily better, but an alternative term for demand avoidance would be like energy scarcity mindset of, like demand avoidance is so logical, based on what you're just describing of you have to store up energy for six weeks to go do a 10-day thing and then you have to recover from it. Yeah, energy scarcity mode. Can we make that a thing? PATRICK CASALE: Yeah, I think we could definitely make that a thing. I think we can do an episode on that. I mean, I think you're so right, because the demand avoidance, like you said, is very logical. When you lay it all out [INDISCERNIBLE 00:26:31]. Of course, I'm going to avoid doing this. But in reality, it's like, I'm just so aware of how much energy it is going to take and how much I'm going to be depleted, that you have to go into that scarcity mode of like, I can't give it anywhere else, because there's nowhere else to give it or to receive it. MEGAN NEFF: Yeah, yeah. I'm thinking of, like, when I get an alert on my, you know, iPhone, or like, Apple Watch of like, you have low battery, would you like to go into low power mode? Where it's like, okay, all of the things that are draining power, we're going to turn it off. It's kind of like living in low-power mode. And then when that becomes your life, I think it's hard to not be depressed. PATRICK CASALE: Yep, because that's really when you're in that mode, where, okay, you turn it all off, right? And you recognize that you're there or you're very aware of what's going on. But then you can't say yes to the things that do bring you satisfaction and joy, because you're depressed, and you feel rundown, and you feel antisocial. Like, I feel like I don't want to interact with people. And that's a good indicator for someone like myself to acknowledge like, this is where I'm at, because I thrive on the connection that I have. And for me to want to avoid that at all costs is usually a very good indication of like, okay, we've arrived here, and this is where we're at. MEGAN NEFF: I love that you have a litmus test of like, this is my gauge of I know kind of where my power mode's at. For you, it's kind of how you respond to connections. For me, it's how I respond to ideas or books. And this was before I realized I was autistic. I've always been an avid reader. I love philosophy. I love kind of existential deep books and reading, and playing with ideas. When I can't pick up a book it's like, "Oh, my goodness, what is wrong with me?" And partly because I've had so much chronic fatigue, I could pretty much always sit on the couch and read a book. But those moments in my life where I couldn't pick up a book, I couldn't listen to a podcast that had ideas, I couldn't take in any new ideas, that was my litmus test. Pronunciation is a hard thing for me. You'll realize that by doing a podcast with me. I'm speaking make up words all the time. But yeah, so I think it's really helpful for people when they know what their litmus test, however you say that word is of, oh, this is a sign, I'm entering low power mode, I'm entering burnout. PATRICK CASALE: I love that you just named that. Are you in that mode right now where books and new ideas are just [INDISCERNIBLE 00:29:21]. MEGAN NEFF: So, I actually can't tell. I was thinking about that as we started like, okay, am I in autistic burnout, or is this like winter chronic fatigue? And I think I've had chronic fatigue, essentially, since I had kids. So, it's hard for me to tease out what is burnout, what is chronic fatigue. You know, I make a workbook a month, which is a lot of work, but I've been able, right now I'm working on one about just how we relate to our thoughts and cognitions, and I've been able to really enjoy learning about some of these concepts and reworking them to the fact that I'm able to enjoy parts of it. To me, I'm like, okay, I'm not at completely, like, burnout mode. But other areas of my life are definitely, I can tell I'm in burnout mode. So, I would say, I'm like, yeah, 50%. If you're at 20%, I would say I'm at 50%, because I still have things that can spark my curiosity. When I'm in deep burnout nothing sparks my curiosity. PATRICK CASALE: And I think that's the exact point right there, that's it. You just nailed it. Something can spark your curiosity, but if it can't that is a great indication that that is where you are, that you are in autistic burnout. And I want all of you listening to think about what are the things that spark your curiosity? What are the things that you feel really, like, energized by and passionate about, interested in? If nothing is coming to mind right now, if you're feeling any of the things that Megan and I are talking about, could be a very good indication that that's where you're at, as well. And I think one thing that we're not touching on and that's important to name too, is I think, when you are in autistic burnout substance use is going to ramp up, drastically. MEGAN NEFF: Absolutely, absolutely. PATRICK CASALE: And I noticed that for me that I was out of a fucking retreat in New Orleans, which is a city of debauchery and surrounded by 20 people that I had to be on for the entire time, so alcohol is my best friend at that moment, because I was messaging you about that of like, the socializing piece, the dropping into the, "Socially [CROSSTALK 00:31:37]" Right? Of being able to interact with people, to be able. To have some semblance of small talk alcohol has to be the lubricant for me. And acknowledging that is the realization of like, you have to pay attention to that for yourselves, for any of you who are listening, like, whatever the substance of choice or process of choice is, because it can get dangerous very quickly, and it can get out of hand very, very quickly, too. MEGAN NEFF: Yeah, yeah, yeah. So, this is interesting. This isn't something I've talked too much about. I hope to talk more about, because I think it's a really important part of being neurodivergent, of burnout. But I have struggled with disordered relationship to alcohol in the past, and particularly, around burnout. So, it's interesting. I'm curious about… there's something I've noticed. So, my spouse and I respond really different to alcohol. For me, it energizes me. For them, he's like ready to go to sleep after a glass or two of wine, or beer, or whatever it is. I noticed among autistic people and this is totally anecdotal, I noticed that it tends to be more energizing for them, which I'm really curious about. So, for me, I often used it to energize and as like liquid dopamine. So, if I had papers to grade or some tedious task, and I was in burnout, then I'd be like, "Oh, well, I'll pair it with some wine tonight." And that became… like, because I could not mobilize. And it was before I knew about ADHD and autism, so I had no like medication support around dopamine and stimulants. So, I think whether it's socializing, because it takes a sensory edge off, and it makes socializing easier, or whether it's to try and motivate us, or because it gives us this kind of faux sense of regulation and energy, I think there's so many reasons we're really vulnerable to, particularly, I would say alcohol during burn out. PATRICK CASALE: I agree 100% and with everything you just said, including the energizing component. And you know, there's such a cost to it too, because you don't sleep well, and then you throw in alcohol into the mix. And I mean, it's just so challenging. So, really trying to, you know, figure out, for our listeners, too, you do a great job, Megan, I want to highlight this of like, really posting valuable, tangible content where you can put it into motion immediately and start putting it into place. And you talk about sensory soothing a lot, and you talk about skills and techniques to kind of manage burnout when you're in it. And I'm just curious about things that our listeners who may not be mental health professionals and have access to the things that we do, that they can do when they're experiencing some of this stuff. MEGAN NEFF: Yeah, yeah. I've got cascading thoughts happening. So, on one, I think, identifying those self-soothers that are like faux self-soothers. Like, they're self-soothing in the moment, but they're actually making your burnout worse. So, things like alcohol use or other substance use. I would think identifying those and really targeting those things, because those create a cycle, a loop that then perpetuate the burnout. And I think for a lot of people working with a medical provider or mental health therapist when they're targeting those self-soothers that are actually in the long run causing more harm, it can be really helpful to work with someone around those things. And then, yeah, I talk about sensory detox a lot, sensory soothing. You have to have some interoceptive awareness to be able to identify when you're sensory overloaded and then soothe yourself. So, sometimes you have to actually go back a few steps and kind of work on interoceptive awareness, which there's some kind of simple mindfulness. That sounds like a big thing, work on interoceptive awareness, but there's simple mindfulness things. Like, I have a smoothie right here, I can grab my smoothie, I can focus on the sensation of the coldness on my hand and what that feels like, I can do that for 10 seconds while I drink my morning smoothie. And by mindfully attending to the sensory experience, putting my smoothie down, noticing the difference in my hand, that's interoceptive awareness builder right there. And it's not an extra I have to do in my day, it's when I'm grabbing my coffee or my smoothie. Wow, I'm like diverging all over the place, so interceptive awareness, sensory soothers, like using all the kinds of sensory accommodations that can be helpful, and it often, I think, takes a lot of experimenting, especially, for later in life diagnosed people and high maskers who maybe are so disassociated from the body by the time they get to diagnosis or identification. It takes a lot of experimenting to figure out what is soothing for my body? What does my body, like? What doesn't it like? So, giving yourself a lot of kind of play space to figure that out. Rest, there's lots and lots of rest, dropping demands, and those can be small. Like, sometimes we think, "Well, I can't leave my job." Or "I can't, you know, walk away from my business." For our family, there's some demands that can always be dropped, for example, family dinner. If someone is having an overloading day they can eat in their room, they can eat in a quiet space. That's an example of a more simple demand drop or maybe not showering that day. Like, there can be these more simple demand drops. But I think thinking through where can I drop demands. And spending less time masking. So, figuring out who are the safe people to be around who I don't have to mask as much. Are there things I can say no to? To say no is huge, just like working on boundaries. And then that gets into people pleasing. And, again, working with a therapist, I think around why I say no hard can be really helpful. I just spewed off a random list. There's more and I think I have a few blog posts that talk about recovery tips, we can link to that. You're going to get a more linear version of me when I write versus when I talk. PATRICK CASALE: I like to get both versions because both are unbelievably helpful. And I just learned a new word today from you. So, interoceptive, I did not know that term. So, here we are. But these are great tips. And I think you're so spot on when it's like different things are going to work for different people. And it's so easy to say like, here's a list of 10 things to try things out. You know, for me, I always need to take hot showers, and like I've always been obsessed with them. MEGAN NEFF: Me too. PATRICK CASALE: And I never realized why I take two showers a day. But now I have a very good understanding and just doing those types of things have been really helpful. And, again, hitting home on having a neurodivergent affirmative therapist really important. If you're, you know, struggling and you're autistic, if you're ADHD, if you have any form of neurodiversity. Like, having good therapy is so crucial. And yeah, being able to unmask, like Megan said, so when you go on a podcast with your friend, and you know each other you don't start with the conversation with, "Hey, how are you doing today?" Knowing that Megan is going to say, "Oh, that's a really bad question." But those are the things, right? That we were talking about, the little things that build up. So, if you can remove these little things from your day-to-day, like the energy it takes to revisit your emails, the energy it takes to communicate with your friends or your loved ones, it's really helpful, because it's just that one extra fucking thing that you don't have to do, or you don't have to worry about, or you don't have to put your energy into. And I think it's so hard when everything takes that extra little bit of energy, MEGAN NEFF: Yeah, absolutely. PATRICK CASALE: Well, this has been a really great conversation about a topic that I think is, obviously, near and dear to our hearts and that we know a lot of you are experiencing in the moment or have experienced. And I hope that this has been helpful. And we're going to continue to have conversations about these topics that a lot of people are just not having. And I think that getting this perspective is really great. So yeah, I don't have anything else to add today. I think I'm hitting my limit. So, I'm going to be honest about that on air. And, yeah, I think that's where I'm at. MEGAN NEFF: I love that. And that's perhaps the best you asked about, like, what can people do to help with burnout? I think that's actually probably one of the best things is to recognize when we're at our limit and honor it. PATRICK CASALE: Yeah. I've gotten used to now post-surgery two things a day. And my schedule is my limit. And that used to be really hard. And it's getting to be a welcomed part of my week where I can say like, all right, I get to talk with Megan for my second thing of the day, and then I'm done. But yeah, I think for any of you listening, all this information will be in the show notes, too. All the links to the blogs Megan's talking about, and the articles. And I just hope that this has been helpful for everyone, too. We still don't know how to close this podcast out, so… MEGAN NEFF: Didn't we come up with like an awkward…? PATRICK CASALE: Yeah, we're just going to say goodbye and then turn it off. MEGAN NEFF: Yeah, but we had some kind of tagline. I'm trying to remember at the moment, like the place where we do awkward goodbyes, goodbye. PATRICK CASALE: The place where we do awkward goodbyes on the Divergent Conversations podcast coming out every single week. Goodbye. MEGAN NEFF: Perfect.
The world of relationships and attachment styles from a neurodivergent perspective is complex and sometimes misunderstood as characteristics of neurotypes and attachment styles overlap and shape social interactions and dynamics. In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, talk about partnerships, attachment theory, and relationships across various neurotypes. Top 3 reasons to listen to the entire episode: Understand the unique challenges neurodivergent individuals face in feeling connected and present in social situations, and how their experiences with attachment styles can differ significantly from societal norms. Identify how the impact of sensory and neurodivergent perspectives on attachment styles can shape relationships in profound and often misunderstood ways. Hear the personal stories and experiences of Patrick and Dr. Neff in relationships before diagnosis and after, including the fantasy of relationships and whether behavior is based on attachment styles or neurotypes. By exploring the complexities of the neurodivergent experience and attachment styles, it can become clearer how you communicate and what you need to enjoy more balanced and healthy relationships where your and your partner's needs can “mostly” be met. Additional Resources Neurodivergent Insights Interpersonal Workbook: Neurodivergent Insights Workbook: https://neurodivergentinsights.com/neurodivergentstore/p/interpersonal-workbook Can Autistic Children Be Securely Attached? By Debra Brause Psy.D. (Psychology Today) The Attachment Project: Great articles and resources on attachment theory Transcript PATRICK CASALE: Okay, so welcome back to another episode of Divergent Conversations Podcast. Megan and I haven't recorded in a couple of weeks, because I've been traveling. We are back, I am sick, Megan has brain fog, story of our lives. MEGAN NEFF: This will be an interesting episode. PATRICK CASALE: This will be an interesting episode. So, we were bouncing around the ideas of talking about attachment theory, and neurodivergence, and potentially, even dipping our toe into the water of just discussing partnerships within our own neurotypes and our own relationships. So, where do you want to start? MEGAN NEFF: Yeah, those are big topics. I think attachment theory would provide the structure to then talk about partnerships. So, attachment theory? PATRICK CASALE: Yeah. So, Megan may or may not give the bird's eye view on attachment theory. And we don't want to go too far into the clinical realm of that. But we do like to set the stage. So, if you have something you want to share or kind of- MEGAN NEFF: Yeah. PATRICK CASALE: …put a foundation? MEGAN NEFF: Yeah, before recording, I was saying like, I like doing that bird's eye view, but also brain fog. It would be easier if I had a transcript. And I think some of the theory will naturally interweave as we talk. But bird's eye view goes back to the 60s, John Bowlby and Mary Ainsworth. And initially, it comes from kind of parent-child interactions, and that they noticed distinct patterns of how infants responded when… it's called the Strange Situation, is kind of the big study that's often cited and how infants responded, well, typically, mom, again, talking about 1960s. So, there's a lot of gender and it was typically mom and baby who went into the study, into a room, and then mom would leave, and come back. And they were gauging, like, how does the infant respond? For securely attached infants, mom was like a kind of safe haven, a secure base is what they call it. And so because mom was there, the child felt more free to go and play with the toys and to explore… there's another, the researcher, there's another person in the room. With more anxiously attached children, they protested when mom left, and then had a really hard time letting mom up or not letting mom, being soothed by mom. Again, typically mom, care provider, primary attachment figure, we'll say that, when primary attachment figure came back would have difficulty being soothed by them. With a securely attached kid, they'd still protest, but they could be soothed by the caretaker when they come back. And then with avoidant, kind of, didn't protest as much when caretaker left and it wasn't as easily self-soothe. But then what they noticed is like heart rate still went up. So, stress markers still went up. Okay, that's my brain fog version of this strange situation. Where the research got, I think, even more interesting is when they started realizing that attachment style continues, and started looking at adult attachment style. And then that shows up in romantic partnerships. And I think that's probably where we'll talk more about today. But it gets pretty interesting when we start looking at attachment theory and neurodivergence. Like, some of the questions that come to my mind is, you know, does this theory and framework fit for us? Is one of the questions I have. The research shows ADHD and autistic people tend to be more insecurely attached than neurotypical people, which makes sense to me. But again, I wanted it to be like, well, how much is that capturing our true attachment style? And how much is that capturing other traits that might make us look avoidant? Or look insecure really? Or anxiously attached? How was my brain fog version of attachment theory? PATRICK CASALE: I think you did a wonderful job. So, you know, as Megan kind of said, attachment theory is interwoven throughout not just childhood development, but throughout adolescent and young adult development too, certainly plays a role in both platonic and romantic relationships, and how you kind of show up, and how you feel safe, secure, connected to the people around you. And I think there's some, like, stuff that's really interwoven here when we're talking about neurodivergence, neurodevelopment, and we're talking about like, feeling safe, feeling secure, feeling like you're attached or connected to, or safe with someone. And this goes far beyond just, like, that emotional feeling of safeness, right? Like, there's also just the ability to be mentally safe and to be neurologically safe, too. So, this is a complicated conversation. MEGAN NEFF: Yeah, for sure, for sure. So, one of the interesting things about attachment theory is the idea the first year your attachment to your primary caregiver becomes kind of like a blueprint, that that becomes your template. And you tend to continue to attach that way. And it can vary, of course, and people can… it's called earned security, when you earn a secure attachment. But this is where I think cross-neurotype gets really interesting. Like, if you've got a primary caregiver and an infant who are cross-neurotype, typically, you're not going to know that in the first year. And what might be attunement to one neurotype, right? So, like, eye contact, holding, touch, right? Well, might be attunement for say a neurotypical infant, might be dysregulated and intrusive for an autistic infant. So, I think that's pretty interesting when we start thinking about early development and cross-neurotype and attunement, because that attunement is what's so important for that secure attachment to take root. PATRICK CASALE: Yeah, and that attunement can so easily be missed, or misidentified, or misclassified, especially, when we're talking about infancy and, you know, any sort of development where the child is not able to actually communicate their needs or have their needs met. And then it can also play a role for that caregiver, too, if it's really challenging to cap that connection with the child as well. MEGAN NEFF: Yeah, yeah. No, absolutely. And the caregiver, like, might be really confused, because things they've learned is like, this is supposed to be soothing for my child, but it's not. And then depending on that caregiver's role, like that can activate their own attachment stuff. Yeah, it gets, I think, really complex, and yeah. PATRICK CASALE: What's been the- MEGAN NEFF: So, what, oh, go ahead. PATRICK CASALE: Go ahead. MEGAN NEFF: I was like, "Okay, this is a lot of theory." I was going to ask, I was going to take it to our experience, because I know we've both talked about, like, "Yeah, we're avoidant." PATRICK CASALE: Yeah. Oh, for sure. I mean, when I started learning about attachment theory, I was like, I think there was a part of me that was probably like, "I resonate with anxious attachment." And there's some anxiety of like, that push/pull kind of mentality of like, I come closer you back away, or vice versa. But then I realized more and more like, by doing my own work avoidant style made a lot more sense. And, you know, to all the folks who are, you know, well versed in attachment theory, a lot of folks that are labeled as avoidant attached get a bad rap. You know, because we feel like, this person is self-soothing all the time, this person wants to do things on their own, they cut people off very quickly, they disconnect very quickly, they look for the littlest thing in relationship to kind of move away. It's really hard for me to create this, like, connection. It feels one-sided. And I think that is a challenging label sometimes for people to kind of be classified under when you start talking about all of this different characteristics of attachment. MEGAN NEFF: Yeah, yeah, I would say both forms of insecure, both avoidant and anxious get pretty bad raps of like, anxious on the other side is like, oh, you're so needy, blah, blah, blah. Avoidant, like you don't care, you're cold. And I've heard it said that behind every avoidant attachment person is a very anxiously attached person, which I was like, I think that's an interesting idea to play with. But also, yeah, I mean, these things ebb and flow more than any attachment grid will show, right? Like, based on context, and relationship, and life. Yeah, so the thing I'm curious about, Patrick, for me is before I knew I was autistic, when I learned about attachment, I was like, "Okay, yeah, avoidant, totally ticks the boxes." Now, I'm wondering, like, "Okay, how much of that has to do… Like, how much of that is true attachment stuff, like, from my early childhood and these things, and how much of that is autistic traits?" Like, I don't like touch. Touch is really hard for me. I like to be alone. I get overwhelmed by people's emotions, positive or negative, so I retreat. A lot of that is due to my autistic neurology more so than… it feels like more so than my attachment. So, that's where I'm like, huh, it's hard to tease out what is my autistic needs and self-soothing versus what is like true attachment style. PATRICK CASALE: Yeah, that's a great point. Like, how do we differentiate what is neurology? What's attachment system related? What is interwoven and connected? I think about this exercise I did, I was doing this like intensive three days somatic-based attachment training several years ago, DARE training. I think it's dynamic attachment re-patterning experience. And one of the… what's the word I'm looking for? One of the workshops or the protocols that we were doing was like, all right, come into a room, walk towards the person sitting on the couch until you can tell that they no longer want you to walk any closer to them based on like, eye contact, based on body language, based on posture. And that's like your window of attachment or tolerance. And I felt like mine was, like, so massive, because I was like, "I don't want to make any eye contact. You know, like, I don't want to have any of this connection in terms of you walking directly at me to, like, approach me in this way." So, that's something that stands out to me in terms of like, chicken before the egg situation. Like, how to literally figure out which is which? Or which is both. MEGAN NEFF: Yeah, because like, yeah, same for me. People approaching me feels very intrusive. And yeah, I think probably both, because having those needs, and I would say, like, sensory needs, because a lot of being around people is a sensory experience, probably then shapes our attachment style. So, yeah, I don't think it's an either-or. PATRICK CASALE: What about you for your experiences? You said you felt like, okay, you're on more of the avoidance style. But if we were to take that step back and say behind every avoidant is an anxiously secure, or anxiously attached, do you have any examples of that for yourself? MEGAN NEFF: Totally. Oh, yeah, I want to talk about this too. Like, so there's this study. I don't think it was peer-reviewed, but it was really interesting. And it's been a while since I looked at it, but looked at like infatuation kind of predating during dating, and maybe attachment or just connection between autistic and non-autistic people, and it showed autistic people tend to have higher infatuation, like, before dating, and then it decreases kind of more rapidly than neurotypical. So, I was like, "Oh, that relates." In college. I had three month's relationships, but I always… so there's this idea of like, a person can become a special interest, right? And I've definitely had that experience. And I would say when a person becomes a special interest, that more anxious attachment stuff does show up. But it's complicated, because part of my attachment is to the fantasy of that person. And I would now say, okay, this is going to sound weird, the fantasy, oh, gosh, this is one of the things I'm like saying and I'm like, "I'm not sure what to say." The fantasy of being non-autistic. Oh my gosh, I'm actually getting emotional, because in the fantasy when people become special interests, I can be close to them and it's not intrusive. And I can feel connected in the way that like I long for. And that's really hard for me, because being in relationship and being close to people feels so intrusive. But in my fantasy, especially, when people become special interests I get to experience a non-intrusive intimacy. PATRICK CASALE: Thank you for sharing that, and just being willing to share that, and be really vulnerable about it. Yeah, I can sense that emotion, I can feel that, and I can really take that in. That makes a lot of sense when you put it that way too, because it allows you to feel deeply connected. MEGAN NEFF: Yeah, yeah. PATRICK CASALE: So, I would like to just name that and put that out there. MEGAN NEFF: I mean, I don't like emotion. I talk about that pretty regularly. I also think the most… what's the phrase? Like, the most personal is the most global, I think. Perhaps even now based on conversations that there will be people that relate to that. For me, like I have talked about this in writing, this is the hardest part about being autistic is, the way I put it in writing a couple years ago is like, my soul longs for connection and my body longs for isolation. And that to me is the hardest part about being autistic. PATRICK CASALE: Yeah, I can deeply relate with that. MEGAN NEFF: Yeah, does my emotion bring up anything for you? PATRICK CASALE: I'm feeling like protectiveness of you. And, you know, you hate physical touch, I hate physical touch, but it makes me want to, like, hug you, embrace you. But I think you just said that perfectly, too. Like, the soul longs for connection and the body yearns for isolation. I think that is pretty spot on. And you know, I say so often, like, the autistic existence is a torturous one. And I think that always my world that I seem to default to. And I think that's why is just that intense push/pull of "Damn, I want to feel like connected a part of, attuned to. And damn, I need to get away as fast as possible, because I am so uncomfortable physically." MEGAN NEFF: Yeah, yeah. Uncomfortable, dissociated, foggy. Like, I used to say that all the time, like, I just want to be in my experience. And what I didn't realize I was saying is like, I'm dissociated and I'm not in this moment. And particularly, in like social, like, the things that you're supposed to feel connected in, right? The big ceremonies, and rituals, and holiday gatherings, these are times where I'm, like, supposed to feel connected and around people. And these would be times that I'd feel the most disconnected. PATRICK CASALE: Which, you know, in regards to what we're talking about, it has further impact in terms of like, your attachment system, too, when these big societal norms/like cultural norms for certain pockets of people, and you're supposed to be connected, and feel joyous, and celebrate, and close to, and present, and all you can feel is dissociated, or foggy, or numb, or just not present in any form. It makes you feel even further other than those situations where it's like, "See, I truly, really don't belong here." MEGAN NEFF: Yeah, and then the like, "What's wrong with me?" Narrative comes on of like, "What's wrong with me? Like, these people are in this experience. Why can't I just be in it?" PATRICK CASALE: Yeah. It's a weird timing that we're talking about this considering, like, we're going into like, some major holidays in the United States. MEGAN NEFF: Yeah. I think holidays is a hard season for a lot of us. I mean, for a lot of humans, but I think, especially, autistic people. Yeah, you know I talk about clashing needs a lot, like in clashing values. Like, talk about clashing values. Like, I want my kids to have memories with extended family over the holidays. I don't want to travel. I don't want to be in a room with more than seven people. Like, yeah, it's a hard time of year for a lot of folks. PATRICK CASALE: Yeah, it's a hard time in so many different ways. And then bring in the neurodivergent component. And there's almost, like, anticipatory grief. MEGAN NEFF: Yeah, yeah. PATRICK CASALE: Like, we're recording, what's the day? November 14th. I have no idea when this will air, probably after Thanksgiving here in the States, but it'll probably air before Christmas. And there is anticipatory grief, for me, at least. I'm sure for you in some ways, too. You've mentioned about your kiddos and your husband. But like, my wife wants to be around her family. She wants to go be close, and connected, and all the things, and there's, like, this anticipatory grief for me where it's like, I can't show up the way she would want me to in a lot of ways. And I also I'm like, conserving energy for a month straight to be able to participate for six hours of my life, which will then therefore drain me for a week of it. MEGAN NEFF: Yeah, yeah. Like, oh, gosh, I have so many visceral memories. We don't travel as much. But like, when we did travel to see Luke's family or even sometimes, like, extended time with my family, like, I would feel like I became someone else. Like, I'd become a very irritable version of me and again, I couldn't be present, I couldn't get into the experience. And I always do this preparation thing of like, okay, like you're going to be yourself this time. Like, I didn't have other any other words, and just like I don't become myself. And I didn't understand what was happening. I just knew that anytime, especially, if we traveled, like, I became a version of myself I really didn't, like, I'm not normally a very irritable person, but I certainly am when I have lost my routines, and I'm traveling, and I'm, like, all the things. So, I hear you on, it's like the grief of, I know I'm not going to be able to show up the way I want to for my wife's family. Like, I feel that. And like, for you, as I remember, for me, I'd be like, "Okay, I just need to flip a switch, I can do it." Like, is there that kind of like belief you should be able to just flip a switch and show up the way you want? PATRICK CASALE: Oh, totally. I mean, and I think that can even be enforced sometimes like, or reinforced through messaging that you receive. And I know like, before, maybe my wife and I really knew each other or like what I needed, my system needed, and that it wasn't just being selfish, or like, I didn't want to participate, where it would almost be like a pep talk of like, "You can show up for one day of your life. Like, you can do that." And sometimes I will even have to say it out loud to myself, like, give myself like this, you know, man in the mirror speech where I look at myself, and I'm like, "Yeah, you can do this, you can like, handle six hours, you can manage this. So, you can make it through whatever the event is." Not specifically just talking about her family, because that's not the truth of it, truly any gathering. And then, so often, just, you know, continuously having to rely on just either one alcohol or two complete silence and isolation. And I would become also like, irritable, short one to two-word answers. When people are talking to me, people would label that as like antisocial, dismissive, rude, whatever labels we want to throw on to that presentation. And it just further makes you feel disconnected, because I think, for me, and I don't know about for you, I then go into, like, this internal dialogue of like, trying to force myself out of that reaction where it's like, "Stop reacting like this. This is not how you want to come across. Like, all you have to do is like, just respond for two sentences." And maybe that will break down this, like, internal barrier, but then you just default back to the same, and it feels harder and harder and harder to then like, really show up in a way that you want to. I don't know if I'm making sense. MEGAN NEFF: It makes so much sense and I relate to that so much that like, okay, don't do it this way, do it this… and like that becomes part of the stress, right? Of like, again, this idea I should be able to do something different here. PATRICK CASALE: Yes. MEGAN NEFF: Yeah. That is where, like, discovering autism has been really helpful, because I was genuinely just so confused. And of course, reverted to, like, I'm a bad person, or now it's like, "Okay, I understand that I have an inner part of my nervous system that is shut down. And like, that's what's happening to me right now." And it doesn't mean that I, like, feel awesome about the situation or the engagement, but I understand it, which is helpful. PATRICK CASALE: I agree, 100%. The understanding may not always be helpful in some ways, but it is helpful in other ways, where it's like, at least you're no longer doing this, like existential search for what the hell is happening here? And you just default to like, okay, this is happening. Doesn't make it any more awesome. Like, the experience is still painful, but at least I understand why it's painful. I think that helps a little bit. MEGAN NEFF: Yeah. Oh, for sure. I mean, I think, you know, I feel like I talk about this a lot here. I'm such a fan of, like, self-attunement through self-narration, of like if I can narrate what's happening, that is a form of like, radical self-attunement. So, I think that opens up the opportunity for self-compassion in those moments of like, okay, this is a hard moment, versus like, I know, for me, what it was before is, "What's wrong with me? Why can't I just get in it?" And I was like, "Okay, this is a hard moment, this is what's happening." It's a very different self-experience in those moments. PATRICK CASALE: So true, so true. We diverge mightily. MEGAN NEFF: I mean, it's all like- PATRICK CASALE: It's all connected. MEGAN NEFF: …clustered around attachment and intimacy. And yeah, it's interesting. I'm not a dualist in the sense of like, I don't like to separate kind of mind, body, you know, that kind of Descartes dualism that took hold and shaped much of western history. But when it comes to this conversation, I actually find the dualistic lens a little bit helpful in a sense of like, there is this really very real split I experience of like, what I long for, and then what my body can handle. And I do think that, of course, it's going to shape attachment, then, an attachment style. PATRICK CASALE: Absolutely. I also think, you know, just on that, in this perspective too, it's like, for those of you listening and wondering, okay, am I just now forever labeled avoidant attached, insecure, anxious attached? You can actually be in different attachment styles with different people in different relationships. And those can evolve based on learning, healing, growth, introspection, understanding. So, this is not a like, black and white, and all be all situation, either. MEGAN NEFF: Yeah, absolutely, absolutely. And that's where, like, an ebb flow, kind of hold on attachment theory, I think is really helpful of yeah, like, there's an attachment quiz out there where to, like, map you out on quadrants, like, both your parents, friends, and then romantic partners, kind of how you lean in those different relationships, which I think that's interesting. But yeah, the idea that like we can heal secure attachment and I think it's going to look different for autistic people. Like, actually I feel really securely attached to my spouse, my children, I would even say my parents. It doesn't look the same way. I need a ton of space. If you were looking at me, you might not say I'm securely attached, you'd say avoidant, but I do think I am securely attached in those relationships. PATRICK CASALE: I actually think that's the perfect, like, depiction of what we're trying to talk about right now, is that from the outsider's perspective, right? If you're just taking into consideration attachment theory, which there's a lot of things that are missed and mismarked opportunities there as well, in attachment theory, but if we're talking about like, for just specifically, looking at it from attachment theory perspective, and you're saying, oh, well, Megan's disconnected, Megan's on their own, isolated, whatever, must not be secure attachment. But what I'm hearing from a neurotype perspective, and a neurology perspective is, is very secure if the people on the other side are also understanding like, mom needs a break, mom needs to read, mom needs to self-soothe, mom loves us, and is in a different room. Like, that takes into account the sensory needs, which I think is where we're trying to create that much more complex picture. MEGAN NEFF: Yeah, absolutely. And that's where like, I would love to see attachment theory kind of adaptive for neurodivergent folks of like, what are kind of the markers? Because I think, like most things, you have to go more into the subjective experience and rely less on those behavioral markers. PATRICK CASALE: Right. And I think that's so important to make a notation of too, is to create some evolutionary language and vantage points on terms of how we view attachment theory for neurodivergent folks, because if our neurotypes are different, if we're talking cross-neurotype relationships, if we're talking about, you know, a neurotypical parent, and a neurodivergent kiddo, or vice versa, or partnership, there's going to be all of these new almost like things, and what's the word I'm looking for? There's going to have to be new ways to really, I don't want to use the word adapt, that's not the right word, to become more comfortable within relationship, understanding that not every single relationship is going to look like this, you know, textbook definition of what one needs to look like. MEGAN NEFF: Yeah, absolutely, absolutely. And I think for both partners and parents who aren't also, specifically, autistic understanding, because like, I'm sure you see this a lot, right? In cross-neurotype partnerships where, you know, one person's need for space, like that can activate a whole story for the other partner of like, this person's pulling away from me and… oh, I lost the thought. There was a thought but it flew away. PATRICK CASALE: It's probably because I took so long in that convoluted way of saying what I was saying. MEGAN NEFF: I don't think it's… Oh, my brain [INDISCERNIBLE 00:30:01]. PATRICK CASALE: You're right, though. I mean, and I think, like, if we're talking about, okay, this person needs space, this is what their sensory system needs is space, but the attachment system doesn't need space. Like, in their embodied experience this is actually like the safest place for them is to have that space, because that means they feel very connected to you to be able to take that space, but then you have someone who might be on the anxious insecure side where it's like whoa, this person is pulling away, they don't love me anymore, they don't care about me, let me come closer. And then odds are you back even further away and it creates that anxious avoidant man. PATRICK CASALE: Yes, what is it called? Brain fog is so interesting, like things I used to be able to pull into mind dance something pattern, it comes from EFT, the pursuit distance or dynamic is a kind of a classic, because here's the interesting thing, when you are insecurely attached, you're actually more likely to partner with someone who's also insecurely attached but from the other side of the road. So, like if you're avoidant, you might partner with an anxiously attached vice versa, which then of course, there's going to be like, some messy dynamics that show up so that distance or pursuer is what's talked about of like, there's the pursuit, because for… We haven't talked a whole lot about kind of anxious attachment but for anxious attachment, when there's an attachment, kind of insecurity, they need closure. Like, they need to work it through with the person. The avoidant person needs space to regulate, to be able to come back to our conversation. But that can create that pursuer's coming closer because that's what their attachment needs to down-regulate. The avoidant person's distancing, because that's what they need space to down-regulate. And then the pursuer distance or dynamic because it, yeah. PATRICK CASALE: And around, around we go. MEGAN NEFF: And around, around we go, yeah. Yeah, so I'm married to someone who's securely attached, but like, introverted and does really well with alone time. And I realized the reason all my other relationships didn't work before I met Luke was they weren't as independent. And so at some point, my relationships always made a turn where they started feeling really intrusive and really not good. And so that's been interesting. Typically, too, like, avoidant people don't get together romantically. And again, I wouldn't say Luke and I are truly avoidant, but we're very independent. And like, it's not a classic pairing you see a lot. But I realized, like, I absolutely needed someone like that. Like, I wouldn't work with someone who also had like high need for independence and wore separations okay, yeah. PATRICK CASALE: Yeah, I think that's a good point. And it's good to know what you both need and then to be able to find it is, I wouldn't say it's a rarity, because it's certainly not. But it does take a lot of like, introspection, and discussion, and communication about needs too. And then each partner being confident in their ability to offer that and offer themselves what they need. I think that's equally as important. Like, knowing what you each, you've mentioned this before, when we're talking about partnerships, but like, just the fact that partnerships, you should not always be solely rely on your partner for joy, happiness, contentment, relational like connection. Like, you've got to get that elsewhere too. And I think you have to have the confidence in both of yourselves and each other to be able to have that space to also have your own interests, to also have your own friendships, also have your own like downtime where every single second doesn't have to be interwoven. MEGAN NEFF: Yeah, yeah. PATRICK CASALE: What are you thinking about that? MEGAN NEFF: I was just thinking about how helpful it would be like, you know, when people are making life partnerships, like to know about things like attachment style and neurotype and like, how these things overlay, and like, just think about how helpful all these lenses are, and how, like, rarely, I think the younger generation they're getting there, but how rarely we enter into these partnerships with these lenses that I think can really unlock so much understanding and alleviate a lot of pain. PATRICK CASALE: For sure, for sure. I don't even think I knew the word attachment until I was like 26, 27. You know, I really didn't know much about my own neurodivergence at that time, if any at all, and then, you know, through partnerships like doing a lot of trying to figure out like what's working? What's not working? Why are certain relationships typically ending? What am I missing upfront or vice versa? And I think for, like, my marriage, you know, we're going on 10 years of being married at this point in time, a lot of it at first was doing that dance of like, that anxious avoidant like situation. And I would say my wife is way less avoidant or anxious, probably more secure than a lot of folks. But ultimately, when I would push away, because I needed to push away and I didn't know why I needed space, or I didn't know why I needed to isolate or disconnect, she wouldn't go anywhere. And I think that created that feeling of safety of like, now I can start verbalizing like, this is what I need, this is why I need it. It had nothing to do with you. I just didn't realize like I need a lot of time to be alone, and to be autonomous, and to be independent. MEGAN NEFF: I love that. I love she didn't go anywhere. And that's a secure base, right? Like- PATRICK CASALE: Exactly. MEGAN NEFF: She stayed secure. She was there. And she wasn't punishing like when you came back. It wasn't, "And you need to be punished before we can reunite." PATRICK CASALE: Exactly. MEGAN NEFF: Yeah, yeah. I don't know if this relates, I'm curious. So, yeah, dating, I did it a bit. And yeah, again, I'd hit a part like where it started feeling intrusive and I'd get, oh, this sounds really bad. I'm going to have a vulnerability hangover after this episode, Patrick. Now, again, I understand it, but when it started feeling intrusive, I would get grossed out but my partner's and once it turned it was really hard to unturn it. I now realize I think it was kind of a sensory, like, you know, I have misophonia. So, like, I joke with my spouse of like, I just won't be in the same room when he's eating cereal. Like, because I will forever be like, grossed out by him and it'll linger for a while. But it would do this thing where it would turn in my relationships and I want to be able to recover. And I think it was kind of a sensory grossed-out meats intrusion. And I couldn't then like recover from that feeling of intrusion. So, I definitely had a point of like, am I ever going to find a long-term partner? Is marriage ever going to work for me? Or am I always going to have this experience of it turning? And then, right, all or nothing. Like, once it's ruined, it's ruined. Was dating hard for you? PATRICK CASALE: Yeah. So, I'm actually glad you named that, too. So, I had similar experiences where like, if I was dating, I was really… I wouldn't use the word infatuated, but I was definitely much more excited about the relationship and the person at first. And then- MEGAN NEFF: Same. High, high infatuation or like [CROSSTALK 00:37:56]- PATRICK CASALE: Yeah, so I was like, and you probably then come across like more charismatic, you come across like more interesting, you come across- MEGAN NEFF: Well, special interest energy, right? Like special interest energy plus new, like romance energy. Like, oh, my gosh, it is a powerful combo. PATRICK CASALE: Absolutely, absolutely. So, this is, again, another example of where we could say attachment, or neurotype, or neurology, right? Or the combination of the two. So, a lot of people who are attachment-oriented therapist would say, like, "The avoidant style, that's very typical." Where, like, you would get really infatuated, you'd be really excited. And then you'd start to pull away, you'd start to find little things about your partner that make you no longer feel connected to them so that you could have your autonomy, and your freedom, and your independence, and you could no longer be connected. But if we're framing it from the neurodiversion perspective that you are mentioning, like the sensory component, and the intrusiveness, and the feelings of like, "Oh, my body no longer feels safe and it no longer feels like excited, it no longer feels secure in this." That's exactly what I think is missing from a lot of this literature, too. MEGAN NEFF: And that's where, to return to what I was saying earlier, which I can now revisit without so much emotion. Like, I think a lot of us spend a bit of time in fantasy. And I think, like, that's where fantasy of an ideal relationship or an ideal person, especially, in that early infatuation period becomes so seductive because in fantasy we aren't sensory creatures, in fantasy we don't have, like, that turn when there's a sensory unpleasant experience. And I think that can make relationships hard, right? Like, we are infatuated, many of us might be fantasizing. Okay, I'll speak from my experience. I get super special interest energy, so curious about the person. I think the person would, typically, like my curiosity and my interest feel, I don't have the word… But then I would do a lot of fantasizing, and idealizing, and building it up. No relationship can live up to that, no reality can live up to that. PATRICK CASALE: Yeah. And then when it doesn't and you're no longer in that special interest energy, and maybe your sensory system is being more activated, because of some sort of partnership or relationship, and then all of a sudden the pendulum swings almost the complete opposite way. And I wonder, even like, we're talking a lot about this from an autistic perspective, which I feel like we tend to frame most of this podcast from, but I wonder about the ADHD type 2 where stimulation and you know, really [CROSSTALK 00:41:05]- MEGAN NEFF: Oh, my gosh, yeah, absolutely. PATRICK CASALE: Right? And like, yeah. MEGAN NEFF: No, that's a huge like, okay, I'm going to do a little detour. I was talking with one of my children and I could just tell their affect was a little bit different. I was like, "Are you sad?" And they were like, "No." And then they were like, "I feel sad, but I don't know why." And then I looked, and I was like, "Are you understimulated?" And their eyes opened up and they're like, "Yes, I'm understimulated." And I've started noticing, you know, I've been married 15 years, that like times when I have, like, started to feel discontent in my marriage and I just think everyone experiences seasons of that, if you're married for a long time, what I've realized is like, oh, I was under-stimulated. And that lens of understimulation has been really helpful of like, I'm not discontent with my spouse, I'm like experiencing under stimulation. Okay, I need an infusion of creativity or some sort of stimulus. But I think that happens a lot for ADHDers is, once the relationship is not as stimulating, it can be tempting to let me go look for that elsewhere. PATRICK CASALE: Yep, yep, I agree with that 100%. So, you know, stimulation seeking, right? And then when we have that dopamine, when we have that adrenaline rush, when we have all the feel-good chemicals in our body, and then all of a sudden it's like, well, that same person, that relationship, the stimulation is missing, so it must be something wrong with the relationship. MEGAN NEFF: Right, right. PATRICK CASALE: And how often can you be in partnership where it's stimulating 100% of the time? I don't think that's possible. MEGAN NEFF: Right. But I think when our, like, especially, if we don't understand our like, need for stimulus, yeah, exactly. It's so easy to go that narrative of like there must be something wrong here, because we're, yeah… So, okay, kind of a rabbit trail, but also, I think, important, because we're both, as far as I know, from you, Patrick, we're both in monogamous arranged partnerships. A lot of neurodivergent people are polyamorous or have different structures. And I think this is perhaps one of the reasons, especially, for autistic ADHDers, like if you have a frame that supports that, I see why that works for a lot of people, because you get the new relationship energy, and you have the secure base when well done, right? When there's a lot of good intentional conversations and the framework around it is setup well. So, it kind of, I thought about that of like, yeah, that makes sense where that works well for so many folks. PATRICK CASALE: Yeah, I think that makes perfect sense in a lot of ways. I think that's why my marriage works really well even though it is a monogamous one. It's non-traditional in a sense, where people will look at the fact that we spend a lot of time apart from one another and say, like, "Is everything okay at home? I see that Patrick's traveling by himself all the time and you're never with him." Or she like has so many friend groups, and so many book clubs, and so many things that she's involved in. And I don't often go to those things, or to those events, or to those parties, or any of those things. So, there is this, like, level of autonomy, and independence, and almost separateness within the marriage and relationship despite, like, neither one of us very often feeling disconnected from each other. MEGAN NEFF: That like, yeah, I'm smiling so big right now, because like, yeah, that's my marriage, and that's why it works. Does it work for Arielle? PATRICK CASALE: Yeah, for Arielle, it works. I think there are definitely times she would prefer that I would definitely come to a get together, or a party, or like, I could at times be more spontaneous with my answers instead of nine times out of 10 being like, "Nah, I don't want to do that." But I think it does work for this stage of our lives. I think the first couple of years it was challenging for her to be like, "What fuck is going on? Like, my husband doesn't want to come to anything with me." MEGAN NEFF: Yeah, yeah, yeah. And essentially, as soon as I asked that I'm like, "Oh, of course, it works for Luke." But Luke is also, my spouse, I might have him listen to us before we are just to make sure, you know, he's cool with everything. He's a very, very, like intense people-pleaser. So, I also realized, like, and one thing I've been encouraging him to do… Again, this might sound controversial, I've been telling him like, "Hey, I both celebrate and grieve my, like, autism diagnosis. You get to do that, too, because like, it impacts our relationship." And he's started slowly, like, you know, there's a concert in town that he was like, "Oh, yeah, I did have the thought of, like, it'd be nice to like, go to that with you. And I know that that wouldn't happen. Or that if we did that, that would be really hard for you." And I'm encouraging him to explore his grief around this. So, I'm also realizing, yeah, I do think it mostly works for us, but also that there can be grief for the spouse. And I think it's so important we let our spouses experience that without it feeling like that's ableism, that's just part of the complexity of human relationship and emotion. PATRICK CASALE: Yeah, and you've actually mentioned that exact scenario on here a couple of times now. And I think it's important, like, it's not only important, it's like paramount to be able to really help support your spouse have their own emotional journey within partnership about what their experience is like, because I'm sure there are times where Arielle is like, "Man, I'm going to this thing tonight, and there's going to be a lot of people there. And I might be one of the only partnered people that is there solo." And that can feel like, you know, there's something wrong on the home front. When I'm traveling all over the damn worlds by myself and people are always like, "Oh, are you married? Do you have a partner? Like, where are they? Like, do they come with you on these events?" I'm like, "Yeah, they do. They have four weeks of time off and they hate traveling. So, this is just the balance that we have found that works for both of us." And I think it gives me that stimulation, and that sensation seeking that I need, and that freedom. And it just works. So, I do think finding out what works is important, like you said before, have we had known this earlier on in our lives, it would probably save ourselves, our partners, our friends a lot of pain, but I'm glad to have arrived to it now. And before it was too late to do that. MEGAN NEFF: I think what I'm feeling like just a lot of gratitude that we both found people that like, because I think for both of us it takes kind of unique people to be able to be married to us. PATRICK CASALE: Yes. MEGAN NEFF: And I'm really glad we both found people for whom we've been able to build a life that's secure and also like works with our sensory needs. And I think sounds like works for our partner's needs as well, mostly. PATRICK CASALE: For sure. I like the mostly caveat, because that's probably the case. MEGAN NEFF: Yeah, I mean, I don't want to, like, be, yeah, totally works for me. I'm sure of it, yeah, mostly. PATRICK CASALE: This will be a good episode to then have both of them on here, like we talked about. MEGAN NEFF: We talked about that. We have talked about having, yeah, do you want to do like a four-way conversation? PATRICK CASALE: I think it'll be pretty cool. MEGAN NEFF: Yeah, yeah. Oh, goodness. I think that'd be really interesting. Yeah, I'll try to see if Luke's up for that. PATRICK CASALE: No pressure. But yeah, I think, again, as so many of these conversations are, there is so much nuance and complexity here. And it's not just attachment style, it's not just neurotype or neurology, it's everything. And I think we have to assess and look at everything when we are trying to figure out not only our client's, you know, struggle areas in terms of their relational relationships and their attunement, but our own, and our friendships, and our partnerships with our families, et cetera, and really taking neurodiversity into account and consideration when we are looking at relational dynamics. MEGAN NEFF: Yeah, absolutely. PATRICK CASALE: Other thoughts? MEGAN NEFF: Is this our ending? Yeah, I don't feel like I have anything to add to that. I kind of feel like we're at our awkward goodbye time. PATRICK CASALE: I like that it started awkward. We both were kind of foggy, we both were kind of cloudy. And then it developed into what I think was a really good, powerful conversation. And I'm just grateful for you too, in terms of if we're looking at attachment in friendships, because we haven't seen each other in a couple of weeks. And we're both not feeling great, but I'm pretty happy with how that turned out. MEGAN NEFF: Yeah, same, same. PATRICK CASALE: All right, everyone who's listening, so Divergent Conversations is out every single Friday on all major platforms and YouTube. You can follow us on Instagram as well. Like, download, subscribe, and share. And, goodbye.
There are a lot of different opinions and feelings about the neurodivergent experience during the holiday season. The reality is that they will be vastly different for each individual, and there isn't a right way to experience the holidays. In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, dive into the complexities of navigating the holiday season as neurodivergent individuals, offering valuable strategies for managing stress, setting boundaries, and finding moments of connection. Top 3 reasons to listen to the entire episode: Understand the challenges of masking or unmasking publicly and at holiday events, as well as the importance of setting boundaries to protect one's energy and sensory needs during gatherings. Identify strategies for managing stress and anxiety during the holiday season, including ways to do self-care and prioritize value-based activities. Learn how to release expectations, find compromise, and create moments of joy and connection that result in more meaningful personal experiences in cross-neurotype relationships and prioritize well-being for every neurotype. We all have different likes and dislikes, as well as perceptions and experiences, so do your best to release any expectations around how you should experience and feel about the holiday season, and try to create an environment and experience that honors your unique wants and needs. Resources: One of Dr. Neff's first blog posts ever written was on navigating their first holiday season after the discovery that they were Autistic, so if you want some more Autistic holiday musings here you go: Autism and the Holidays: Reflections: neurodivergentinsights.com/blog/neurodivergent-holiday-reflections A Thanks to Our Sponsor, Gifted Learning Lab! ✨ Gifted Learning Lab: We would love to thank Gifted Learning Lab for sponsoring this episode. If you're raising a bright neurodivergent kid and you'd like to feel more confident and less stressed as a parent, you can get free parenting resources and supportive coaching from The Gifted Learning Lab and Dr. Danika Maddocks. The Gifted Learning Lab is designed for parents of emotionally intense or sensitive gifted and twice-exceptional kids and teens, including those who are autistic, PDAers, ADHDers, or otherwise neurodivergent. Danika is a former gifted kid and a late-identified autistic who combines intuition, compassion, and humor with practical strategies that help you build a calmer and more connected family life. She has supported twice-exceptional kids and families for over a dozen years as a teacher, therapist, award-winning researcher, and parent coach. If you've tried other parenting advice without success, The Gifted Learning Lab might be right for you - all the ideas and strategies are tailored to the strengths, needs, and characteristics of intense gifted and twice-exceptional kids. Danika helps you understand your kid's intensity from the inside out so you can connect with your child during tough moments and know what they need to thrive. You'll learn to work with your child's brain and you'll feel more confident letting go of traditional parenting approaches that aren't a good fit for your child or yourself. If you're also neurodivergent yourself, you can use many of the strategies and tools from The Gifted Learning Lab to bring more ease and compassion to your own life too. Right now, The Gifted Learning Lab is offering a free email mini course to help you defuse and prevent power struggles with your gifted or twice-exceptional kid - in an affirming, supportive way. If you feel stuck in endless negotiations or arguments, check out the free power struggles mini course at www.giftedlearninglab.com/power. Transcript PATRICK CASALE: Yeah, so it is like a couple of days before Thanksgiving. It's like super dreary and raining outside here in Asheville, and you're sick. And the holidays are coming up. So, I think we wanted to talk about at least a lot of the major American holidays that are coming up. So, I think we want to talk about just neurodivergence, and holidays, and how to navigate them, and how to protect yourself and safeguard your own energy and mental well-being. MEGAN NEFF: Absolutely. Yeah, it's complex, isn't it? PATRICK CASALE: It's hard. I think, regardless of whether you are neurodivergent, neurotypical, I think the holidays are hard for a lot of people, for a lot of reasons. And I think they can bring up a lot of emotion, I think they can bring up a lot of stress, a lot of anxiety, a lot of dread. I think they bring up a lot of almost like, for those of you who are high maskers, having to perform, or show up a certain way, and act as if like you feel a certain way about being there. So, yeah. I think [CROSSTALK 00:01:06]. MEGAN NEFF: Yeah. Absolutely. And then the guilt of feeling a certain way about being there. Like, if you don't enjoy it, but all of the shoulds, "I should enjoy this." Yeah. Yeah, the combination of like, the cultural pressure of like, this is the happiest time of year. Like, time to connect with family and X, Y, Z, and then the internal experience, if that's not your experience, yeah. PATRICK CASALE: Yeah, and I think it's further complicated when you might, you know, be neurodivergent and you might be struggling internally if you, especially, have not discussed outwardly or publicly with family, friends, colleagues, whoever you might spend holiday time with. And I also think there's complications that may arise if you are unmasking publicly at a holiday event, or if you recently talked about it publicly, and then your family or friends or whoever have a million questions about your experiences feels like hell. MEGAN NEFF: Yeah, like to have private conversations, but not in a private setting. PATRICK CASALE: Yeah, exactly. Sorry [CROSSTALK 00:02:16]- MEGAN NEFF: Yeah. PATRICK CASALE: Yeah, so we want to talk about strategies, we want to validate those of you who are like, "I hate the holiday season in general. Like, I don't participate, I don't have people to spend time with. I don't look forward to them." Like, society throws this message in our faces of how we're supposed to perform and how we're supposed to feel. So, I get that, and I'm definitely one of those people. I don't enjoy the holiday season, never have, never will, don't look forward to it, dread it, can't wait till it's over. How about you? MEGAN NEFF: I actually like it. PATRICK CASALE: Okay. MEGAN NEFF: But I haven't always… you weren't expecting that, I know. I haven't always liked it. But I think in the last few years, so I definitely didn't like it before. In the last few years, once we've understand our family and our family needs, like we've taken a pretty serious to have like a cozy, comfortable holiday season, like the four of us. So, things kind of actually slowed down. Now that's definitely not always been the case. I think, discovering we used to travel and that was horrific, that was so terrible. I do not recommend traveling while neurodivergent with neurodivergent children during holiday season. So, I don't enjoy… So, like this week in the US is Thanksgiving for folks who still celebrate the holiday that I think we should probably stop celebrating. That's another episode, but like that, I've always, always disliked, because it's like you go into a room, there's lots of people, it's kind of fancy, there's a lot of smells. Like, I've always really disliked that holiday. But again, this family, like the four of us are going to hang out and partly complicating factors, which most people just aren't thinking about anymore, but like exposure. Like, to go to a large family gathering, COVID, when I get it and my daughter gets it, it knocks us out. And so I'm still thinking about exposure, which a lot of folks I realize aren't, so there's that. PATRICK CASALE: It's a good point, you know, because I know you've been battling long COVID. So, for those of us who, you know, we did that episode on chronic health and just illness in general with Mel, and I think that's another factor. Yeah, I mean, this episode is not going to come out before Thanksgiving, but like talk about sensory hell well, walking into a massive busy room with, like, all the smells, all the things, all the textures, like all the people. It can be so overwhelming so quickly. And I myself am also looking forward to just being at home with my wife. My dad's coming up today. And that is it. And we are not doing anything. And that feels pretty perfect to me. MEGAN NEFF: Yeah, yeah, absolutely, yeah. And so I think when we can lean into the comfort of the season it can be nice. Like, for Christmas season, you know, I love the smell of pine or for whatever that fresh tree smell is. I love the twinkly lights, not the bright lights. I love hot chocolate and like warm fuzzy blankets. So, I think when I can lean into the smallness of the holiday, and release the pressures of making it big, I've actually been able to enjoy the season. But most people can't release those pressures of the big and I definitely did enjoy it before I could do that. PATRICK CASALE: Yeah, I agree with you. Myself, you know, I celebrate Christmas, but like, it's only because my wife does. I'm Jewish but like, not by religion, but by ancestry. So, I would err on the side of like, not giving a shit about any of it. It feels so commercialized like all around. For me it's very much like my autistic side where I'm like, this feels wrong, this feels like black and white to me. I don't enjoy any of this. It feels like… what's the word I'm looking for? Not commercial, again, that's what I already said. But it feels so capitalist, you know? Like, the whole cycle of it. So, like, for me, I just want it to be over. I know my wife enjoys it. So, I think that's another challenge when we've talked about cross-neurotype partnerships and different needs, in general, as human beings. Like, trying to show up if you do have a partner or a family who want to participate, who are looking at things, and then trying to figure out like, how do I get myself there or at least able to be there? MEGAN NEFF: So, this is kind of divergent. But are you running a Black Friday sale, because you're a business owner? PATRICK CASALE: I am not. I hate Black Friday sales, too. Like, I'm just like, I can't do it. What do I do? Like, fit a couple of $100 off a retreat registration or like… it's just not for me? MEGAN NEFF: Yeah, no. Like, it's so interesting speaking of the commodification of this time of year. Like, I always feel so torn of like, everyone in entrepreneur land is like, "You should be prepping for Black Friday for months." And like that just feels, I don't know, I don't have good feelings about it. Think I'm going to put together like a neurodivergent gift guide. But yeah, it's a weird thing as a business owner, the commodification of this season of like, do you lean into that? Do you just like, no. PATRICK CASALE: I'm one of those people though, like, if it's like, everyone tells me I'm supposed to be doing something I'm not going to do it. That's just always who I am. I didn't watch Game of Thrones for years, because everyone was like, "You have to watch this show. It's amazing." I'm like, "No, this is stupid." And then all of a sudden, I've watched it 60 times on repeat. But yeah, that's been my mentality around basically everything despite whether it impacts me negatively as a business owner or not. MEGAN NEFF: Yeah, yeah. No, I like that, I like that. So, yeah, commodification, I mean, that can be a stress of the holidays, right? Just the financial aspect for people. I think family, like, if anyone has, like, anyone has a dysfunctional family, which most of us to some extent do like the holidays can be hard. But if you have lost someone, like we talked about grief a couple of months ago, holidays can be excruciating, the sensory aspect, the shoulds. Like, yeah, what have we missed? There's a lot of reasons [CROSSTALK 00:09:05]- PATRICK CASALE: Well, you know, like, struggling with sobriety or if you're struggling with substance use in general, the holidays are typically a time where that's going to ramp up quite a bit. Whether it be for coping, [INDISCERNIBLE 00:09:22], like whether it be for coping, whether it be through navigating loneliness or feelings of I don't feel connected to this or feel like I don't belong. So, you're going to see a lot of that as well. MEGAN NEFF: Absolutely, absolutely. Yeah, for sure, for sure. PATRICK CASALE: Wondering about like, and you know, also holidays tend to come with like, if you're working, right? For an employer, holiday parties, and get-togethers, and gatherings are situations where you may have to really, you know, figure out a way to either manage that energy, and that boundary, and that sensory overload, and that social expectation for your job's sake, or you may decide like I can't participate in this. And does that have ramifications for my career or for my co-workers and colleagues and I relationships? MEGAN NEFF: Yeah, absolutely. And gosh, yeah, work social events can be really complex to begin with for autistic people, because the context shift and the role shift, but it's not clear. It's like, okay, so at work we don't talk about personal things, but then when we have a holiday party we do, but like, it's still limited. Like, I think, in general, those work social events are really complicated to navigate. PATRICK CASALE: Yeah. MEGAN NEFF: Yeah. PATRICK CASALE: Absolutely. And then you're talking about small talk hell once again, never looked forward to those. Always found reasons or excuses to try to get out of them. So, I think it's important to also think about like, okay, we're talking about what the holidays can bring up. Some people may have good association, some negative, etc. But boundary setting, ways to manage some of the stress and anxiety as you're going into a season where you're supposed to feel happy, and joyous, and connected. MEGAN NEFF: Yeah, yeah, because if you're feeling disconnected, it makes it all the more apparent. PATRICK CASALE: Yeah, absolutely. And I think it always feels for me, like, "Oh, what's wrong with you? You know, how come you don't look forward to three months of fucking Christmas music going on in [INDISCERNIBLE 00:11:33] that you go to, to go shopping?" I'm just, like, looking forward to Reese's changing the trees, and then eggs, and like all the seasonal Reese's, I'm really excited about that. But boundary-setting wise, I think it's important to have some strategies so that you can kind of try to set boundaries with family, and friends, and colleagues, as you're going into a couple of month's stretch where you really want to protect your energy, you really want to sensory soothing, you really, maybe don't want to have certain demands placed upon you. So, I think it's important to think about strategies and techniques where you can at least have some of that in place. You know, I know, it's not always possible for you to say like, I'm not going to participate in this, but to the best of our abilities to have some strategies, I think would be ideal. MEGAN NEFF: Yeah, absolutely. And some of it, like back to cross-neurotype relationships, some of it might come back to strategies in like, if someone's partnered with their partner, because I think those are sometimes the hardest conversations of like, one partner really wants to travel to see their family but traveling is really hard for the other. Or just, in general, one partner might want to be doing a lot of holiday events outside the home while that's hard for the other partner. So, I think starting conversations in that partnership, with someone's partner is probably really crucial, especially, if like, one's extroverted and one's introverted or, you know, one likes to be out of the home more. PATRICK CASALE: Yeah, absolutely. I think start those conversations, you know, obviously, we're talking like this is going to release probably sometime in December but going into 2024, start those conversations early next year too. Like, be proactive in that communication, because, for us, you know, I've talked about my relationship on here before, my wife has a very large family, they all get together for the holidays. They love it, she looks forward to it. But we've kind of had this like, agreement where for Thanksgiving week we won't go anywhere, we won't go to her family's, we won't go to all the gatherings. But like for Christmas, we'll go for the day so she can see our nieces and nephews unwrap presents. And like for me, that's a concession I'm totally willing to make. It also allows me to, like, conserve that energy a little bit more then. You know I have to prepare to be on the go all the time. MEGAN NEFF: Absolutely. So, yeah, like you all have found a compromise that works for you two. Yeah, yeah. I think compromise, the other word that comes to mind is differentiation. Like, I think there's this weird idea that couples always have to do things together. Like, one couple can… like, I get that it's not ideal not to maybe spend the holidays together, but like, one person can travel without the other, one person can go to an event without the other. Yeah, there might be questions but like, we don't have to do everything together just if we're partnered. And I think sometimes we forget that. PATRICK CASALE: I feel like you've mentioned this like on 10 different episodes now, that exact, like, sentiment of couples do not have to do everything together. So, that could be a whole freaking series, I think, of autistic or just cross-neurotype partnerships and neurodivergent partnerships. But yeah, I agree, 100%. And finding that compromise, finding that balance, and yeah, there might be some conversations to navigate, but I do think it's probably in the long run better off for everyone all around if they come to that agreement, for sure. MEGAN NEFF: Yeah, yeah. And then I've mentioned this on the podcast before, too, but like, I like to overlay pacing systems. And a pacing system is just like any system that helps you think through how to pace your activity with, like, a value system. So, for me, and for like a lot of neurodivergent parents, yeah, I'm pretty fine not seeing my family during the holidays, but I want my kids to have memories with their cousins. So, like, that's a high value for me. So, maybe this is confusing, because I use like the light system for both. Like, that's a green light value. Like that's a high value and like a red light activity for me. Like, it takes a ton of energy. But like, I intentionally make that choice. And similar for you to like go see your wife's family. So, I think, also thinking through both like energy expenditure, but also values, and then figuring… like spending your red light energy expenditures on green light values. Like, you don't want to be spending red light energy on, like, low-value things. That's just not the good use of our energy expenditure. PATRICK CASALE: Yeah. MEGAN NEFF: So, then, again, figuring out like, what can we drop during the holiday season that's not a high value, but perhaps a high energy cost. PATRICK CASALE: Agreed 100%. It's a great way of looking at it, and I think prioritizing. And it's kind of doing that cost-benefit analysis, right? Of like, this is worth it to me, but I know it's also going to drain me. So, just having to put the tools in place to mentally prepare for that, and then support your nervous system and your sensory system afterwards however you need to. I think the one thing that I'm thinking about holiday related, I don't know why, maybe it's just my own dysfunction and family systems, but is like uncomfortable conversations at the dinner table. And I think for those who are like, you know, whether you're new to your diagnosis, and you're talking about it publicly, there might be some scrutiny, there might be questions, there might be, like, maybe even some ableism that comes up and we just did an RSD series, so hell, we certainly can create a whole [INDISCERNIBLE 00:17:31] RSD at these situations. So, maybe just creating some, like, conversational cue cards for yourself too of like, you know, some [CROSSTALK 00:17:40] some scripts or things like that, that can be helpful for you as well to set those boundaries. MEGAN NEFF: Yeah, I think having scripts kind of pre-thought-out, or boundary scripts is so helpful. Like, actually, I don't want to talk about that here. If you want to talk about that one-on-one, if that's true, if you're happy to talk one-on-one. But having thought through, yeah, how to kind of get out of those sticky situations beforehand can be really helpful. PATRICK CASALE: Yeah, absolutely. MEGAN NEFF: Do you have any like go to, like, well, phrased sentences of that kind of shuts down a conversation? PATRICK CASALE: I've always been good at like saying like, "Okay, if this conversation is becoming uncomfortable, how can we switch the conversation to something that everyone's interested in talking about?" And that's usually like, "Oh, like, let's talk about the football game that's on TV right now." Or, like, "Let's talk about whatever else, and bring the conversation away from the attention on you and back to some feels more neutral or more common ground for everybody that everyone can participate in." It also, like, takes the pressure off of feeling like the spotlight is just, like, shining on equally and I have now, like, to respond, or communicate, or participate. MEGAN NEFF: Yeah, yeah, yeah. PATRICK CASALE: Also- MEGAN NEFF: Okay, I had… Oh, go ahead. PATRICK CASALE: Sorry, go ahead. MEGAN NEFF: No, go ahead, I'm kind of changing gears, so… PATRICK CASALE: I just have the avoidance strategy of just not going so like, that's always [CROSSTALK 00:19:10]- MEGAN NEFF: Yeah, yeah, yeah. Yeah, I was thinking you're like, I don't really have that experience of avoiding awkward things, because what I do is I shut down when I'm in large sound groups. And it's interesting. My dad who, you know, we've been talking a lot about, he's also a psychologist. So, we've been talking a lot about my neurodivergence last few years, who like, "Yeah, I'll look over the table and it's like you're just not there." So, I shut down, which like, then I just am kind of listening to everyone else's conversation. And group conversations are really hard for me, which is sometimes evidenced in this podcast. So, I just get really quiet, shut down. What I didn't realize… And it's interesting, my spouse used to like, "Babe, are you okay?" And this was pre-diagnosis. And he'd worry about me. And was just like, "Okay, she's in her little shutdown mode." But what I didn't realize, I think this isn't perhaps helpful for people, was, you know, that is a stress state and the body needs to release that, the body needs to complete the stress cycle. When I would go home back when I was drinking, speaking of like drinking holiday season, I would often be like, "I need a drink." Like, after I got home. And now looking back, it's like, okay, my body was in this kind of frozen, immobilized stress state, looking for a way to get out of that stress cycle. Turns out, spoiler, that's not a great way to actually complete the stress cycle. But just to know, like, even if you're not feeling anxious and agitated, if you're feeling shut down, like, when you're done with those events, your body still needs to release that, whether it's like going on a really grounding walk in the cool air, or like taking a gentle bath. Like, your body needs to do something with that. And I think that's just a helpful thing for people to be aware of during the holiday season. PATRICK CASALE: Absolutely, 100%. I tend to do that too in group conversations around like a dinner table or something when multiple people are talking at once, where I'm like kind of doing this internally, and I can't focus, or really, like, participate, then I start to shut down, and then I become really quiet. So, yeah, that stress state is definitely real. So, pay attention to that for yourselves and just kind of monitor that. There may not be something you can do in the immediate scene of like, "I can release this right now." But just like Megan said, that great strategies when you are out of that environment, being able to get that stress out of the body, because you certainly don't want that to build up and just because, there are, you know, complications or issues. MEGAN NEFF: And taking breaks. Like, if someone's spending a long day somewhere, like can you get outside. You know, is outside less than overwhelming, but like the cool air that like just getting fresh air, again, if air quality is fresh. I'm getting kind of out of… because I think part of it is being in a, you know, like enclosed space with lots of bodies that I know that's part of what's hard for me. So, taking breaks, sensory breaks throughout the day. So, again, so that that stress kind of has a chance to come down so it's not just building, building, building all day, yeah. PATRICK CASALE: I was always the person that'd be like volunteering to go run errands, you know, if, "Hey, can anyone go pick this thing up?" "Yep, sure. I'll go do it. Like, let me get the hell out of here." MEGAN NEFF: Yeah, yeah. PATRICK CASALE: So, yeah, putting yourself into situations like that, where you can take a break, get outside. MEGAN NEFF: I think that's a great reminder, because like, a lot of us want connection, right? And it goes back to, I don't know that we'll release in this order, but last week, we recorded on attachment and belonging, and we want it, a lot of us. It's just, well, I'll speak for me. Like, I want it, it's just hard for me. So, I think finding ways, same for me, it's like, okay, if I can do the dishes, if I can find a way to stay busy, if I can run an errand. Like, are there ways to feel connected to whatever is happening, whether it's with the family or the friend group, but in a way that is more tolerable. So, I love that you like become the errand person. PATRICK CASALE: Yeah, I do that now, you know, even in retreat settings when I have my partner there, I'm like, "Yeah, I'll go get the food. Like, I'll go do the thing." So, I can kind of like, take, like, a test on myself. Like, where am I at? Just kind of gauge it and reset a little bit to my best of my ability. And that's always been pretty useful. So, I'm just trying to do more of that stuff. And like, I remember when I was living in New York before I moved to North Carolina, like dating someone whose parents were divorced, my parents were divorced, having to go to four different places in one day, and like- MEGAN NEFF: Oh my gosh. PATRICK CASALE: You know, put on the show of like, "Oh, I so want to be here and like can't wait to spend this couple of hours." And I just remember how horribly exhausting, like, all of that was. So, yeah, just identifying ways for you all to ground, regulate, sensory soothe, take breaks, set boundaries, all the things that work for me. MEGAN NEFF: I would not connect, because I think part of what can be painful about the season for us is sometimes, like, we're seeing other people connect or we're at least seeing on social media the illusion of people connecting, and even in like the movies, the holiday movies. Like, a lot of them are very connection-focused. So, finding ways that, I think, help us feel deeply connected to people in our lives during the season, I think that could be in the kind of holiday self-care bucket if we're putting together a little holiday self-care toolkit. PATRICK CASALE: Absolutely, agree, 100%. I think connection is paramount. And just finding those ways to connect with one or two people that you can in whichever way that you can, super important. MEGAN NEFF: Yeah, yeah. PATRICK CASALE: Also, like, the, you know, theme of like, receiving gifts and gift giving, always been a struggle for me. But my wife's doing, like, special interests, like, gift giving for me, and it has changed the way I receive things so drastically, like opening something up and being like, "Oh, I don't know how to react to this." To actually like being pretty genuinely excited or content with, like, some of that stuff. So, that's been a nice thing to have that shift too, because I myself, like, struggle when my reaction isn't what the other person wants it to be. MEGAN NEFF: Oh, gosh, yeah, that could be a whole thing. Like, yeah, opening gifts in front of people, it's awkward, because there's like this expectation and like, a lot of us don't hide our faces very well, like, if we're disappointed. I remember early Christmas I had like a response and I was a kid, but I had response to something my aunt gave me, and I very much remember the like, "We don't do that." But now, like, I hate opening gifts in front of people. I get so awkward. Yeah, gift-giving feels really inefficient to me, especially, again, in my partnership, like we share the same funds. So, I'm like, why would we gamble spending money on something that we don't know if you'll like? So, we actually just buy our own gifts but then wrap them for each other, which I think it's so much more efficient. PATRICK CASALE: Yeah, I like that strategy. MEGAN NEFF: Logical, not efficient, logical. PATRICK CASALE: Okay, it's very logical. Yeah, yeah. We share a joint bank account. So, like, whatever I'm buying you is coming out of the same money, right? Like, yeah, it's a- MEGAN NEFF: So, don't you want to like it? Like, why would we risk spending money on something that you're not going to like? PATRICK CASALE: Yeah. And you don't want to hurt the other person's feelings, especially, if you care about them. So, you're like, "Fuck, I hate this gift, but I don't know how to react to this." Yeah, it's a whole thing of, again, it's just holidays are complicated, weird timing, for sure. And then like, I don't even want to get started on the idea of like, okay, it's about to be the new year. So, new year, new you. Like, [CROSSTALK 00:27:59]- MEGAN NEFF: Oh my gosh. PATRICK CASALE: …place like, and I can only start them January 1, 2024. I can't start them anytime other than that, and if I don't- MEGAN NEFF: Magical day. PATRICK CASALE: Yeah. MEGAN NEFF: Yeah, yeah. Talk about logic, like, okay, so yeah, I actually do kind of also enjoy the like, it's my ADHD, right? And like, I love challenges. I love novelty. So, I do kind of get excited about New Year resolutions, but I feel embarrassed about it, because I know the issues with it. But I do actually kind of get excited about, like, a point to reflect on the last year and a point to like kind of set intentions of like, what do I want this next year to look like? What do I want the rhythms and the habits to be? So, again, talk about commodification. I don't love all that happens around that. But I do like the invitation to pause and reflect. PATRICK CASALE: I agree. I love the pausing and the reflection. I love timelines, in general. Like, I like kind of looking back and zooming out a bit, because I don't feel a sense of like contentment, or pride, or satisfaction, or presence a lot of times in my day-to-day. So, to zoom out, it's like, this feels good. Like, it feels nice to be able to, like, put things in linear order too. But yeah, I don't love the like, okay, it's the new year, now I'm going to change everything about me and I'm going to do these new things. And like, it's why gym memberships lasts for like a week, and then nobody ever goes back. It's one of those things. I sound really cynical today. And I just realized I just hate the holiday season. And that's just my reality, so… MEGAN NEFF: You're allowed to have that. I mean, I think that's actually one of the tips I gave, is like release any expectations about, like, how you should feel about this season, right? Whether it's you should like it or… Like, and I think that's perhaps one of the most starting helpful points is just releasing any expectations we have about how we should experience this season. PATRICK CASALE: Absolutely. MEGAN NEFF: So, you're modeling that, well done. PATRICK CASALE: And yeah, I'm just hearing myself out loud. I'm like, "I hate that." That really bothers me. MEGAN NEFF: Well, maybe you're hearing it because I'm like, usually with you, with all the cynicism, and today I'm like, countering, "I'm like, yeah- PATRICK CASALE: Yeah [CROSSTALK 00:30:34]- MEGAN NEFF: …but this is not my experience." PATRICK CASALE: Right. I like that though. MEGAN NEFF: When you and I have different experiences on something, weird. PATRICK CASALE: It is good to highlight that, you know. Not all profiles have to be exactly the same, so… MEGAN NEFF: Mm-hmm (affirmative). PATRICK CASALE: I don't know if I have anything else. I can keep talking about this. MEGAN NEFF: Feel free. I'm also fine. Like, I think a short episode is fine. And feel free to keep talking. PATRICK CASALE: Yeah, yeah, I think we talked about everything. I wanted to hit today just kind of, like, being aware of you not feeling well, too. I don't want to drag this out if we don't have to. So, I think everything we talked about is good. For those of you listening, just find the little spots and the little moments that you can embrace or connect to. And I think that it takes a lot of the pressure off of like, this was supposed to feel this way or be experienced this way. Or I was supposed to show up this way and really try to take some of that intense, like, societal expectation off of you if you are in a part of the world right now that's gearing up to celebrate a lot of these holidays that are coming up. MEGAN NEFF: Mm-hmm (affirmative). PATRICK CASALE: Okay. MEGAN NEFF: That's well said, can't add anything, hopeful of that. PATRICK CASALE: Well, this episode will come out, probably, early December. So, for those of you who are listening, we appreciate it and hope you can kind of just create whatever you need to create in the next couple of weeks too, and take care of yourself. So, for all of you listening to Divergent Conversations, it's on all major platforms and YouTube. New episodes are out every single Friday. Like, download, subscribe, and share. And, goodbye.
Indiscernible elements: Calcium explores the path a molecule can take through various stages of life and death - from the perspective of Calcium itself. through the use of detailed illustrations, poetry, and dialogue, author Korynn Newville creates a discussion around how humans can change the way they create the built environment to be more conscious of the wondrous systems at work in nature. If the same Calcium in a femur bone can be used in concrete to build a cathedral, a house, a sidewalk or can be recycled by a nearby plant or tree, how can humans purposefully help that process along? What would Calcium design if it had the choice? what would Calcium say if it could tell you its story?
Labels can have a profound impact in the way neurodivergent individuals are perceived by others and themselves. Labels both originate from and shape narratives that can shift the trajectory of how life is experienced. In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, talk with Sandra Coral, somatic therapist, founder of Neurodivergent Narratives, author, and podcast host, about the impact and source of labels, the use of somatic therapy, and the treatment of individuals from children to adults who have and don't have the label of ADHD in relation to race, gender, sexuality, etc. Top 3 reasons to listen to the entire episode: Understand the need to acknowledge and embrace the complexity of individuals' experiences, challenging narrow storylines that do not reflect their true experiences and promoting empowerment through personal narrative exploration. Learn about the significance of somatic work for understanding and meeting the needs of neurodivergent individuals including establishing safety and trust, and co-creating a language for accessing the body in therapeutic processes. Identify the impact of societal markers and the teacher's own background on how children's behaviors are interpreted in educational settings for the most marginalized within the neurodivergent community. The stories we tell ourselves shape our experiences with the world, so pay attention to your stories and ask yourself where they come from—did they come from you or someone else—then trust yourself to be the expert in your own life. Sandra's Information and Resources: Founder of Neurodivergent Narratives
Rejection sensitive dysphoria (RSD) impacts many aspects of your life and can be a driving force in how you manage relationships and internally process the world around you, so there are many nuances for it. In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, answer some of the questions from listeners about RSD, including everything from self-shaming to the connection with other diagnoses. Top 3 reasons to listen to the entire episode: Understand what masked RSD looks like and the impact it has on shame and finding connection. Identify what connections and impact RSD might have on conditions like PMDD, as well as how the experience of rejection can be viewed differently between ADHD and Autistic individuals. Learn some strategies to help deal with the experience of RSD to create a better environment around you and pay attention to your core needs. When it comes to RSD, everything goes back to connection. It's both the thing that humans need and also something that can seem so difficult to attain and maintain. If you are struggling with complex and shifting intrusive narratives or internalized emotions that can last for years, try to focus on your core needs at the moment and check in with yourself so that you can offer yourself the opportunity to think more objectively and take action that is more likely to benefit you. Resources plus Exclusive Coupon Code Dr. Neff's Rejection Sensitive Dysphoria Workbook Bundle (Clinical Use): https://neurodivergentinsights.com/neurodivergentstore/p/rejection-sensitive-dysphoria-clinical Dr. Neff's Rejection Sensitive Dysphoria Workbook Bundle (Personal Use): https://neurodivergentinsights.com/neurodivergentstore/p/rejection-sensitive-dysphoria-bundle Use Code: “DivergentConversationsListener” To get 20% off anything in the shop, including the RSD bundle. Dr. Neff's free blog posts on RSD: https://neurodivergentinsights.com/blog/category/Rejection+Sensitive+Dysphoria A Thanks to Our Sponsor, Tula Consulting! ✨ Tula Consulting: We would love to thank Tula Consulting for sponsoring this episode. Workplace communication can be messy. Considering the lens of neurodiversity can be helpful for understanding this. Maybe you found yourself frustratedly typing "per my last email" in an office communication, perplexed about how a colleague or client doesn't seem to understand your very clearly written email. Consider this. Visual information processing isn't everyone's strength. Perhaps a quick call could make a world of difference. Or how about including a video or voice message with your email? And this technology exists! Simple steps like these can make your work environment more accessible and bring out the best in everyone. Tula Consulting is on a mission to help organizations build more neuro-inclusive products and work environments. Tula does this by bringing curious minds to solve curious problems. Find out more by visiting tulaneurodiversity.org. Transcript PATRICK CASALE: All right, so we are back with RSD part three, which will probably lead into an eventual RSD part four. But last week, we did not get to all of your questions, we kind of diverged, and we want to get to more of them today, especially, the ones that we think we have a lot to talk about. So, I think we want to start off with what can highly masked RSD look like? MEGAN NEFF: Love that question, first off. So, last month when I was, like, deep in RSD mode, making the workbook, I created a grid, which… this is my like pattern finding, so I just want to tease out it's not like in the clinical research. But I made a grid of overlain RSD responses on top of kind of like the fight, flight, fawn, freeze, and talked about different responses. And we talked about this a little bit in our first episode. But like the fawn and the freeze response, I would say are masked RSD responses. And so this could show up as like perpetual people-pleasing, right? And perfectionism, those two. The myth being if I never make a mistake, or if I never make someone upset with me, then I would never have to experience this really painful thing. And so a lot of masked RSD looks like really high-performing, high-achieving kind of busybodies ways of being in the world. And then I think when the RSD doesn't really get triggered, because none of us are perfect, and even if we're people pleasers, we're going to have miscommunications with people. I think that experience gets very internalized. So, instead of perhaps an emotional or angry outburst, what you're going to see is things like perhaps substance use, or a lot of negative self-talk, and rumination, and retreating, in some cases, self-harm, and other really like that…. And taking the pain internal. Like, also talked about as internalization, you're going to see a lot more of that. So, the people around you might not actually even know you're having an RSD trigger. PATRICK CASALE: Yeah. And you know, those are the moments, right? Where we could use the language for a lot of self-destructive behavior going on behind the scenes to be able to keep up appearances, to be able to apply that social lubricant, like you've mentioned before, of this is how I fit into these spaces, this is how I show up, this is how I can people please, this is how I can socialize. And then that burnout just really takes over, right? Because there's going to be intensified depression, there's going to be intensified burnout, there's going to be intensified anxiety going on behind the scenes. And you, kind of, like, starting each day from a negative energy reserve and trying to get it back at that point in time where you're like, I'm operating at like negative percentage, and I'm going to put myself into the situation again, and again, and again. MEGAN NEFF: Absolutely. And then we've also got to consider shame dynamics, which also perpetuate all those things you just mentioned of people with internalized RSD would have a lot of shame dynamics going on, which perpetuates a lot of like negative coping. And here's the thing about shame, so shame theory is really interesting, actually. But one of the tricky things about shame is that sometimes there's this belief we fall into or trap. Like, if I can self-shame enough, I can protect from other shame, right? So, self shame it's the shame we give ourself. Other shame is the shame we experience from others. So, people with very internalized RSD who are, you know, people pleasing, perfectionistic, tend to have really harsh inner critics that are very shame-based and have a really hard time diffusing and unhooking from these inner critics partly because the inner critic feels really protective. Because if that inner critic is, "I'm going to shame you, so you don't experience shame from another person." It's playing a protective role. Now, we would argue it's not actually protecting or helping the person, right? But it feels like it's incredibly protective. Most of my life I've had a very, very harsh inner critic. And yeah, I couldn't unhook from it until the last few years because I was like, "No, this is protecting me." So, self shame protecting from other shame. PATRICK CASALE: Yeah, shame is one of those emotional experiences that is probably one of the most painful things that happens to a human being, I think, that that shame spiral is so incredibly painful, destructive, torturous, hellacious. I mean, the criticism that ramps up the internal dialogue. I tend to go into more of like a shutdown space when I'm feeling really shameful. I noticed that comes up a lot when I feel like I can't do something that I feel like I should be able to easily do like screw something in in a way that looks even, or not cause a hole in the wall, or having to call a handy person after that because I've created said issue. That happens a lot. Then there's the social shame component where that really happens with the RSD triggers for me, where it really does create this almost like existential dread component to where you are really questioning everything and anything and almost losing sight of your sense of self in those moments too. MEGAN NEFF: Oh, I think we absolutely lose sight of ourselves in shame spirals. Yeah, so that's kind of, I guess, clinical or lexiconic, if that's the word, definition of shame, just in case people aren't aware. So, guilt is the experience of like, I've done something bad and guilt is actually a good experience. Right? It's helpful feedback. For one, we're not living consistently with our values. Shame, on the other hand, is I am bad, right? It's like I am the bad object, I am bad. And so that experience of I am bad. It's interesting, as we're talking about shame I'm like, how are we three episodes into RSD and we haven't talked about shame yet? Or even how did I write a workbook on RSD and not to talk about shame? Because I think, really what we're talking about it is when the shame is activated relationally because I think that is what happens with the RSD trigger is it's, I let this person down, or I like hard feedback, I am bad, right? And it's such a quick narrative we drop into, I am a bad person, which is the shame narrative. PATRICK CASALE: For sure. So much of our sense of self, self-worth is connected too. And that narrative of I am bad, or I am unworthy, or I am not good enough, or all of the things that start surfacing, oh, man, I've seen so many, just situations where shame has created this spiraling sensation that has created an immense amount of destruction in people's lives in terms of both therapeutically and personally, and from my own perspective for myself. So, it is one of those emotions that is just really, really painful. MEGAN NEFF: Yeah, absolutely. PATRICK CASALE: I mean, we're talking about associations right now and we're talking about shame, we're talking about guilt, we're talking about sense of self that all gets triggered. We start to also see, and I just want to use a trigger warning, but we do start to see an intensified sense of suicidal ideation with a lot of this, too. MEGAN NEFF: Yeah. Oh, I mean, yeah, shame and suicidality absolutely walk hand in hand. So, when you're doing a suicide assessment, there's questions you ask, and how a person answers some of those questions are indicative of how much risk they're in. And one of those questions that tells us this person is in a really high-risk bucket is do you believe or feel that the people in your life would be better off if you weren't here? And shame seduces us into that really painful narrative, shame and many other things, depression, but… PATRICK CASALE: Yeah, I personally think that shame is one of the most damaging and destructive things that we experience. So, heaviness aside, techniques and strategies to work through that shameful experience when it's coming over you because there are ways to not let it engulf you and drown you in a way where, you know, it can be that devastating and destructive too. MEGAN NEFF: Yeah, I mean, Brene Brown is really the queen when it comes to shame, right? Like, I love the idea that vulnerability is the anecdote or the cure to shame. And I think that's part of why when we have internalized RSD we're so prone to some of the like negative coping, because we're less likely to reach out and be like, "Hey, I'm having this experience right now." We probably feel shame about the experience, right? Like shame about being too sensitive, shame about our shame. So, reaching out becomes incredibly difficult. But if we can find someone, whether it's a therapist, or a friend, or a partner who gets it and where we can give that shame some breathing room, and by breathing room not like room to expand, but like room to dissipate, right? Where it doesn't live inside so intensely, that is one of the most powerful things we can do to disrupt a shame spiral is to connect, which again, like we're talking about relational shame, right? So, like belonging has been threatened. It makes sense that connection would be the anecdote to that. PATRICK CASALE: And it also makes sense that it would be the last thing that you would reach for when you're feeling like, "Oh, I'm really feeling this massive amount of shame or rejection. I know I need connection, but I can't reach out for it, because that makes me feel too vulnerable, that makes me feel unsafe. I don't feel worthy of connection." Whatever the internal dialogue is, it makes it that much harder a lot of the time. MEGAN NEFF: Yeah. Well, it's interesting, I'm thinking about the matrix and I'll, like, find a way to make a one page infographic of this that I'm referring to, and we can attach it, because the other parts of the matrix are fight, flee. And I'm just seeing how all of these reactions, all of these stress reactions to RSD move us away from what we need, they move us away from connection. So, if we're fleeing, obviously, that's going to move us away from connection in the in the fight. That's where I would say projection comes online, and where the shame is so intolerable to feel it gets projected onto other people, and then we lead with anger. That's a way of pushing people away. So, whether it's like we're retreating in our pain internally, we're fleeing, or we're projecting all of these move us away from what we need, which is connection. And so, I think that's a lot of work living and working with RSD is figure out like, these are going to be my, like, automatic stress state responses. How do I override that to actually address a coordinate here and move toward that? PATRICK CASALE: Yeah, I think that's a great point. And if we can anchor into the idea that foundationally at the root of this is the desire and necessity to have connection yet the fearfulness or inability to feel like you can access it, and just constantly trying to anchor in, and remember, like, connection is at the root of this, right? Like, as humans, relational beings, regardless of we're introverted, extroverted, does not matter, we still need connection in some capacity. That's something that we absolutely need and it's a major… What am I going to say? It's majorly a part of our makeup. And when we don't have access, or we feel like it's not possible, or we don't have those people in our lives we can turn to, then this can really start to spiral out of control, I think, and this is where we see this really get to that negatively impactful place, and that really destructive place too. I'm not finding my words appropriately right now, but I just want to emphasize the importance of connection. MEGAN NEFF: I feel like I was tracking. I didn't notice that. I feel like I could linger in this conversation if this feels poignant and important. I'm also aware we talked about trying to get through questions in this episode. PATRICK CASALE: Oh, yeah. We did [CROSSTALK 00:14:08]- MEGAN NEFF: Should we move on to the next one? PATRICK CASALE: Let's put in that one question because I think that the topic of shame, in general, could be an entire series. MEGAN NEFF: Let's do an episode on neurodivergent shame because shame is very much part of the experience. It's often tied to, like, of course, past relational experiences we've had, internalized ableism, and then a lot of us have co-occurring trauma and trauma and shame are also very, like part of what's traumatizing about trauma is the shattering of self that often happens in trauma. So, yeah, let's do a shame episode or episodes, because it's a big topic. PATRICK CASALE: Yeah, so for everyone listening, if shame is important, it feels like it's a part of your experience, which I assume for most of you it is, including ourselves, we will do more episodes on shame and specifically focused on that topic. But we do have other questions that we want to get to, if we want to make it an Answer Your Questions episode. So, one question was RSD linkage to PMDD. So, you wanted to take that one? MEGAN NEFF: Yeah, I mean, I think we should do an episode on PMDD, and just like neurodivergence and hormones at some point. Anyways, but PMDD is essentially, oh my gosh, what does it technically stand for? PATRICK CASALE: Post-menopausal dysphoric disorder? MEGAN NEFF: Good job. Yeah, I've been referring it to PMDD so long. I was like, I'm not going to get those letters right. Thank you. So, it's kind of- PATRICK CASALE: [CROSSTALK 00:15:47] also dysphoric disorder. MEGAN NEFF: I mean, it's like PMS on steroids, essentially. PATRICK CASALE: Yeah, it's called that. MEGAN NEFF: So, basically, yeah, PMS on steroids, the clinical definition, PMS on steroids. PATRICK CASALE: Going into the DSM 6 soon, premenstrual dysphoric disorder? MEGAN NEFF: Yeah. And it's very connected to like how hormones are shifting as part of this cycle. And both autistic and ADHD people who have a estrogen cycle, would that be the way to say it? That experience a cycle are much more vulnerable to do both PMS and PMDD. And one of the things about PMDD… PMDD can be really intense. Like, I've definitely seen cases where someone baseline mood is actually pretty okay but will experience like, acute suicidality in that like week or that period. Like, it can be that intense. It's not that intense for everyone, but for some people, it is that intense of a mood shift. So, absolutely, like, I describe it as like just paper thin, like in the sense of like everything's getting in, in that period. So, emotions are going to be heightened. So, of course, RSD, if someone has a baseline RSD, that's also going to be heightened because RSD is connected to emotion regulation. So, with PMDD, emotional regulation becomes a lot harder. And we tend to feel things more intensely. So, yeah, I hadn't actually thought about that, but I love that of that thought experiment of what RSD looks like in that window of time. And I think that's actually really helpful to know. Because it's not going to make it go away, but being able to say like I know RSD triggers are going to be big this week, I'm probably going to perceive rejection where it's not, I'm going to feel it deeply. It doesn't mean it's true. Like, being able to do that self-talk. Like, I don't know whether I have PMDD. But I definitely have like hormonal shifts. I'll tell myself typically that week, "Don't trust your mind. You're not allowed to think about the future, you're not allowed to evaluate relationships." Like, I have like hard rules about what my mind is allowed to do that week. And it's not like a harsh rule. It's like a kind, like, parental figure come in and be like, "You know what? Your mind's not up to any good this week." So, there's some things we're just not going to think about because it's not going to be helpful. Here's what we're going to do instead. PATRICK CASALE: I love that. MEGAN NEFF: Yeah, but yeah. Sorry, go ahead. PATRICK CASALE: No, that's great. I mean, man, you can make worksheets, or like affirmations, or guidelines for people around like that sort of structuring in terms of, I'm not going to trust my mind this week. Like, these are the things that you know to be true, these are the things that we're not going to put any energy into. Like, that makes so much sense. Okay, add another episode to the list of neurodivergence and hormones. So, moving on through the questions, these are leading to episodes which we love. So, thank you for submitting these. Okay. Do stimulants cure RSD? That's a pretty basic response and we're going to say no to that. There are stimulant medications, right? Megan talked about the psychopharmacological perspective in episode one of things that do help in some capacities. But if we're going to just make a blanket statement that say stimulants do not just cure or help RSD in that capacity. Okay, we did highly masked RSD. What else did we say we were going to talk about? MEGAN NEFF: I think autistic versus ADHD, and that was a question that came in. So, you'll hear autistic people and ADHD people talk about RSD. Like, there's a lot of resources out for both. Now, I actually didn't realize this till I started doing the deep dive about… as soon as questions come up, like is RSD specific to ADHD? So, first of all, I see a lot of like monopolizing of experiences. Like, I see a lot of autistic people who are like only autistic people have sensory sensitivities, which isn't true. So, I just want to caveat that. Like, anyone can be high on the rejection sensitivity spectrum, right? This is a spectrum of humanity. RSD as a term, as a concept, as something we talk about is specific to the ADHD literature, in the sense that it's come out of ADHD literature, you know, the projections are like, I don't know how scientific this is, but according to Dr. Dotson, like 99% of ADHDers experience this. Like it's a very core component of ADHD. Other people might be very high in the rejection sensitivity spectrum for different reasons. You know, attachment style, trauma, autistic. Like being misperceived, internalized ableism. Is it RSD if a person's autistic and not ADHD? I don't know. Like, I don't know if we would apply that term. We could say there might be really high in the rejection sensitivity. I have noticed when working with autistic-only populations, it's like hit or miss. Like, maybe they have it, maybe they don't. But I also see people where it's like, I don't really care what people think about me. Like, that's also present. So, autistic people do experience victimization, and like social bullying, and marginalization, they're neuro minority. So, I think there's a lot of reasons why autistic people would also be high on rejection sensitivity. And then we know a lot of autistic people who are also ADHD. So, I think I didn't provide clarity, I just explained how muddy the waters is. PATRICK CASALE: That's okay. Sometimes that is the answer, though, how muddy the waters are, because… And I'm also thinking as you're talking, right? Like, we know so many people are undiagnosed either autistic or ADHD, and how much gets missed. So, I'm just wondering just how many people out there who identify as ADHD, who are also autistic, but unknown, or undiagnosed, and vice versa, and how so much of that also plays a role into the prevalence of RSD showing up as well? MEGAN NEFF: Absolutely, absolutely. Yeah. I will say, oh, this was after you left, you had to dip out for a meeting, when we interviewed Amanda for Ask An Autistic I asked about this. And at first, it was kind of like, yeah, maybe some RSD. And then we talked about like, okay, what happens when… and because we're both on social media, why I asked explicitly about that, she's like, "Yeah, these narratives come on and then, you know, I've usually worked through it in like five or 10 minutes." And I was like, "Five or 10 minutes?" Like, I still get intrusive thoughts about experiences, or even like, this is embarrassing to admit, like comments that I got two years ago, where like, if I embarrassed myself, or did something I'm not proud of, I still get intrusive memories about that like 20 years later. That's a pretty different experience than being able to move through something fairly quickly. And I know Amanda's just one autistic person. But that was a really interesting moment in our conversation, when, like, yes, painful, yes, hard. But the ability to have the tools to work through it without it like bouncing back for me, I work through it, but it keeps bouncing back. And then I have to work through it again. And that's part of that intrusive kind of overtaking. PATRICK CASALE: That's a great point because that actually makes me remember what I was saying for my group practice. So, shout out to Dr. Bennett Harris who's going to rub that in my face that I named him on this podcast. But saying like, these things linger for years sometimes, right? And that's something we haven't addressed yet, is the length of time. I know you've addressed it in your workbook, but we haven't addressed on air that this can bounce back, like you just mentioned for years. And it can be something where you can look at it when you're in a healthy like cognitive space where you're like, "Okay, this comment, I've worked through it." But then maybe something thematic, or something similar comes into play, and it hits you, or it impacts you in a way that you didn't expect. And all of a sudden you're right back to that comment from two and a half years ago. MEGAN NEFF: Yeah, yeah absolutely. Yeah, I'm glad we're talking about that because that's a part of RSD that like, A, it's just confusing and B, it's really stressful to just like be going throughout your day and like all of a sudden intrusive, like, embarrassing or shameful memory pops up and you're like back in it. Like, yeah. Okay, this is kind of a silly example. But we were filming an episode, and we were talking about how we need to do RSD, and we were like speaking of RSD, we just got our first like one star review. And in the moment I was like, you know, like talking through like, okay, that makes sense. But then that comment kept popping in my head throughout the day. And sometimes when I think about this podcast, like that just pops back up. And it feels so silly. And then the secondary narrative of like, "Megan Anna, why do you care about this?" Right? So, it's not just the interest of memory, there's often a second narrative that comes on up like, why are you still holding on to this? Especially, if it's something like that or like, I feel like that's petty. And I should be able to just release it, then there's a second narrative of like, why are you still thinking about this? Why can't you release it? Why can't you get over it? PATRICK CASALE: Let's talk about the secondary narrative, because I think that's so important that you just named that. One, I'm sorry for bringing that up on air, won't ever do that again. MEGAN NEFF: No, I'm glad you did. It's a good live example. And it's like, yeah. PATRICK CASALE: I think we're onto that ship forever. I cannot tell you how often I check All Things Private Practice and Divergent Conversations Apple Podcast reviews. Why am I doing this to myself? Like, why am I going on there knowing that there could, eventually, be a one star review? Like, I should be able to let that go and then that will destroy me for days. I don't know why. That's self-inflicted, it's not healthy. The secondary narrative, that process, right? Of, okay, this experience, this reaction is creating this sensation, it's creating RSD, it's creating distress, then the secondary narrative that's trying to rationalize said reaction that is exhausting to bounce back and forth between narrative one and two over and over and over and over and over again. MEGAN NEFF: Yes, and one thing I've observed, because the neurodivergent brain as well, so divergent is that we often have, like, overlapping narratives. I'm doing this with my hands of like, we'll have an experience, and then we'll have a narrative about it, and then we'll have a narrative about the narrative. And so one thing I've noticed, and I've started to be more careful with this, so I don't do too much CBT, I do have more of a mindfulness approach to like, let's start noticing your thoughts. What I've noticed, and I think, especially, with neurodivergent people, sometimes once they started noticing their thoughts, they got worse. So, like, there's an experience of this. So, the next week came back and like so much worse. So, it's like, okay, let's unpack what's happening here. And it was the secondary narratives. It's now that I'm observing my thoughts, I'm having so much judgments, and evaluations, and feelings about those thoughts. And so then you have to teach how to become mindful of the secondary narrative, right? PATRICK CASALE: RSD about the RSD. MEGAN NEFF: Yeah, yeah. RSD about the RSD. And invalidation, right? Like, I think we're really good at invalidating ourselves in those narratives. Yeah, yeah. PATRICK CASALE: I'm going to try not to diverge too much, because we said we were going to stay on course, which we should always know it's never going to happen. I'm thinking about like, secondary narratives, and how often I have to verbally process them out loud. Like, I will talk myself through the secondary narratives a lot of the time, and how often my wife looks at me in the house. And she's like, "Who the fuck are you talking to?" And I'm like, "I am talking through like my internalized experience and my thoughts that are happening right now and processing them out loud to try to pick them apart to decide what feels rational versus irrational and what feels like there's a linkage to." And she's like, "Is this happening in your brain all the time?" And I was like, "This is happening in my brain all the time." MEGAN NEFF: Yeah, yeah, absolutely. It's weird to me that it's not happening for everyone inside their brain all the time. Like- PATRICK CASALE: Like, this isn't taking up all this mental real estate 24/7 for you? People were like, "What?" She looked at me like, "How do you sleep?" And I'm like, "Well, you know the answer to that, not well." Oh, my God. MEGAN NEFF: Yeah, we have busy minds. And so I think learning how to work with our mind it becomes really important. PATRICK CASALE: Sometimes that is that mindfulness. Like, for me when I hear the word mindfulness, right? And I'm really going to diverge is I hate that word. MEGAN NEFF: I do too. I do too. PATRICK CASALE: Because I associate it with like being still- MEGAN NEFF: Meditation. PATRICK CASALE: Meditate. MEGAN NEFF: Come to your mind. PATRICK CASALE: Exactly. Yeah, that's not going to happen. MEGAN NEFF: No. PATRICK CASALE: But I would much rather apply mindfulness in the way that you do, which I think you said was like, I cannot remember the term that you [CROSSTALK 00:29:38]- MEGAN NEFF: Oh, mindfulness on the go. And I searched it up after that. And there actually is a book that was written a long time ago with that same term. So, I did not come up with the term. I mean… PATRICK CASALE: But I like what you mentioned, right? Like, you're being mindful about the temperature of your smoothie in the morning, or your water, or you're being mindful about the fact that your mind is diverging into a million different directions. And instead of like saying, "Oh my God, my mind is diverging into a million different directions. I need to shut it down. There's something wrong, I can't do it." I'd rather say my mind is diverging into a million different directions. And I'm just being mindful of that. MEGAN NEFF: Yeah, yeah. So, when I think about mindfulness, like I like the imagery of tagging. Like, I feel like a lot of what I'm doing is tagging, like, oh, that's what that is, that's what that is. So, it's like naming, tagging, and… PATRICK CASALE: List making. MEGAN NEFF: Yeah, what did you say? PATRICK CASALE: List making MEGAN NEFF: List making. Well, no, I think I would think of list making as more like you're in the content. And when I think about mindful tagging, it's more of an observational process. That's a really subtle distinction. And that's part of it. So, I like the imagery of like, observing mind, evaluative mind, and what mindfulness, like it's not an activity, it's a way of being, it's a way of being with self. So, whenever we're in observing mind, like that observer who's not judging, not evaluating, but like tagging, like you're having this experience, this is the script that's happening, you're in observing mind. And you can do that while being busy. Like, you can do that. You don't have to sit and listen to a 10-minute meditation and try to empty your mind. For me, when I tried to do those exercises, then all of the evaluation scripts like I can't do this, this is so hard for me, my body physically feels uncomfortable. PATRICK CASALE: Yep. And that can even lend itself and I'm going to get us back on track in a second. But that can even lend itself to being dismissed in the medical and mental health care system where medical professionals are like, "Have you tried mindfulness for sleep?" And you're like, "The fuck? Yes, of course, I have tried mindfulness for sleep. I am neurodivergent. Do you understand how that mean? How the brain works?" Yes, I have tried it. Have I ever tried to like tag and be mindful of a million different thoughts simultaneously while looping them all together? Like, that's every night of my experience? Of course, I've tried that. Yeah, anyway, I don't want to diverge that way. So, you wanted to also get to the topic of… MEGAN NEFF: Oh, yes, yeah. PATRICK CASALE: … slash [CROSSTALK 00:32:20]… MEGAN NEFF: So, we got a couple of questions about like, how do you tease out RSD from trauma, from attachment stuff? Which is great question. So, first, I think whenever we get the, like, tease out questions, I want to first ask, like, for what cause? Or for what purpose are we teasing this out? If it's like, I don't know what the diagnosis is, if you're a clinician, that's going to be a very different conversation. And if it's like, this is a known neurodivergent person. So, I mean, it's physiologically the same things happening, right? Like, the sympathetic nervous system or shut down mode, like it's been activated, a stress state has been activated. We're responding to something relational like, so teasing out like what are the triggers? So, in the context of trauma, and well, that also gets complicated over time about PTSD with a specific trauma, we're talking about complex trauma? But like, what are the triggers around it? Same thing with attachment. But honestly, I have a hard time teasing out like, what is anxious attachment and what is RSD, because if criticism, or feedback, or someone being disappointed in you, that's going to be an attachment injury. So, in attachment theory, we talked about attachment injuries, and that's going to activate stuff. So, yeah, again, muddy waters. When it's the neurodivergent person who also has trauma, also has insecure attachment, that point it's like a soup, right? Like all of these things are intersecting. And which means, also, like on one hand that could feel disempowering, but on the other hand, it means like, as we heal from trauma, as we move toward more secure attachment, everything's going to get better, right? The whole system's going to get better. Okay, I feel like I've talked or rambled. Let's stop for now. PATRICK CASALE: When you say it's, you know, muddy waters and like a soup, I think that's, again, I know so many of you want clarity on this. And I think sometimes there's not a lot of clarity to be given, because so many [CROSSTALK 00:34:44]- MEGAN NEFF: …things intersect. And these are constructs, right? Like attachment theory. Like, these are constructs we've put on top of experiences. PATRICK CASALE: Right. MEGAN NEFF: But they're limited. PATRICK CASALE: Absolutely. MEGAN NEFF: Now, it's totally up to you. PATRICK CASALE: No, that's fine. We're both having thoughts at the same time. But the one takeaway when we're talking about attachment trauma, if we're trying to like differentiate, if we're trying to… okay, if we want to put RSD over here versus what's anxious versus what's avoidant versus what's complex PTSD? Gets really murky. But what is at the foundational level of all of these things? It's something we've talked about several times already in the last two hours, connection. Attachment trauma is about connection. RSD, ultimately, is about connection, complex PTSD, there's going to be layers of unsafe or unhealthy connection. And I think that so often we're missing this mark of like, we want so badly to understand what's happening to us or our own experiences, right? But at the end of the day, foundationally, at our core, it comes back to connection, and our desire to have it, and our inability sometimes to receive it, or maintain it. And I think that that impacts everything that we're talking about. MEGAN NEFF: I love that of like, get back to the basics. And I think, especially, with autistic people, I can see this of like, we want to know precisely what's happening, right? So, like, what's the RSD? What's the trauma? What's this? I don't know how helpful that conversation is, but I do know that what's helpful is getting down to the core need. Like, okay, this is a painful moment, what do I need in this moment? And getting back to that like? And yeah, typically, a lot of these things are connection, belonging, these are the things that are being threatened, and this is what I need right now. So, getting back to the basics in those moments, I think, is ultimately, typically, going to be more helpful than like, is this attachment is this? It's like it's all the things, right? It's all the things intersecting in a difficult moment. PATRICK CASALE: Exactly. And what usefulness does it serve if we're just throwing label on top of label on top of label, because like, there's such a bad negative stereotype with avoidant attachment as there is, and then you throw, you know, the label of autism or neurodivergence, and people are going to have their own experiences around this. And I think, if we just circle back to connectivity, and just the ability to have relationships, and what are we missing? What are we feeling like we're really having painful experiences around? The attachment label doesn't matter as much. Like, it just gets so complicated and convoluted then, or trying to, like, parse apart, you know, things that are really deeply connected and interwoven too, and it's really hard sometimes to get a sense of like, where does this go? And where do I place this? MEGAN NEFF: Yeah, yeah, absolutely. And I think, partly, like, we have to get into how is the label being used? You know, I take a very constructivistic approach to language in general. Like, I prefer language that is most helpful. So, for some person, like talking about like, oh, my attachment system is activated right now. If that's the most helpful for you attuning to yourself, and validating your experience, use that language, right? If it's more helpful to be like, "Oh, my RSD is activated right now." Use that language, use that frame. But how these labels are being used, I realized, like for myself, I often use these labels in that mindful tagging way that we were just talking about of like, "Oh, this is happening for me right now." But I'm very aware that those labels could be used and have a very different experience for someone, right? It could be like, a shame base. Like, this thing is activated right now and I'm so like, mad about it and mad at myself. Or it could be used as a distancing, right? Distancing from the core wound, distancing from the core need by saying, "Oh, that's RSD." And then, like, just leaving it at that. It could be a way to emotionally distance from the pain. So, as much as the label is important, I think, more so like, how is that label being used? What's the internal experience of it? PATRICK CASALE: I just lost your sound for a second. MEGAN NEFF: Oh. PATRICK CASALE: You're back, okay. I heard how is this label being used? How is this label being experienced? Is that it? MEGAN NEFF: Yes. And then I was done. So, I just feel like I ended the sentence. PATRICK CASALE: Maybe that was it. But yeah, I agree 100%. And I think if we can kind of incorporate some of those techniques, and strategies, and just ways of thinking about this it could be a little bit less painful. And it's given me a lot of ideas right now, which is not where I want my brain to be going, and to diverging into all these ideas because I've got to get into other meetings. But I have so many ideas for episodes based off of these last couple of conversations. And again, I just want to highlight how helpful these Ask The Audience sessions can be, because, one, we want your feedback. Those of you who are listening, we appreciate all of you. That feedback has been very helpful, constructive, positive, and we do not take it for granted. And we want to answer these questions because we know a lot of this experience is feeling confused, feeling overwhelmed, feeling [INDISCERNIBLE 00:40:26], feeling disconnected, feeling alone, and we want to help maybe make this a little bit more of a human experience for all of you involved. Megan's just [INDISCERNIBLE 00:40:42]. MEGAN NEFF: I'm feeling like that was the conclusion, episodes are out every Friday. PATRICK CASALE: Yeah, episodes are out every Friday on all major platforms and YouTube. And goodbye. MEGAN NEFF: It's like a compulsion now, Patrick. I like have to make it awkward at the end. PATRICK CASALE: I mean, you're doing a good job. MEGAN NEFF: I honestly I'm not trying. It's just like, okay, that was the summary. You look at me. I don't know what to add. I feel like if I add anything I'll have ruined yourself your beautiful summary. My voice is now going out. PATRICK CASALE: Just that. MEGAN NEFF: Goodbyes are rough. PATRICK CASALE: All right, goodbyes are rough. Goodbye.
If you struggle with rejection sensitive dysphoria (RSD), navigating social media can be complicated. Social media is both a place where many neurodivergent individuals are able to find connection and be seen, but it can also be a place where impulsivity and reactiveness can run rampant, both on the giving and receiving end of online conversations and posts. In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, delve deep into the complex relationship between social media, rejection sensitive dysphoria (RSD), setting boundaries, and mental well-being. Top 3 reasons to listen to the entire episode: Understand how to address RSD burnout with social media, as well as the important role that boundary-setting plays in helping you show up online with reduced intensity of RSD. Hear about some ways that Autistic individuals may experience social media differently, and even more positively, than allistic people and neurotypicals. Learn some RSD-symptom-reducing strategies to check yourself and check in with others when you are struggling with fear of being misunderstood. As you navigate the complexities of social media, remember to check in with yourself and establish your boundaries for the way you interact with others online and who you allow into your space. Don't be afraid to unfollow someone or snooze posts from a friend. Make it your priority to protect your mental well-being and engage in a healthier way. Resources plus Exclusive Coupon Code Dr. Neff's Rejection Sensitive Dysphoria Workbook Bundle (Clinical Use): https://neurodivergentinsights.com/neurodivergentstore/p/rejection-sensitive-dysphoria-clinical Dr. Neff's Rejection Sensitive Dysphoria Workbook Bundle (Personal Use): https://neurodivergentinsights.com/neurodivergentstore/p/rejection-sensitive-dysphoria-bundle Use Code: “DivergentConversationsListener” To get 20% off anything in the shop, including the RSD bundle. Dr. Neff's free blog posts on RSD: https://neurodivergentinsights.com/blog/category/Rejection+Sensitive+Dysphoria The EFT attachment infinity loop can be downloaded here: https://neurodivergentinsights.com/couples-resources A Thanks to Our Sponsor, Tula Consulting! ✨ Tula Consulting: We would love to thank Tula Consulting for sponsoring this episode. Workplace communication can be messy. Considering the lens of neurodiversity can be helpful for understanding this. Maybe you found yourself frustratedly typing "per my last email" in an office communication, perplexed about how a colleague or client doesn't seem to understand your very clearly written email. Consider this. Visual information processing isn't everyone's strength. Perhaps a quick call could make a world of difference. Or how about including a video or voice message with your email? And this technology exists! Simple steps like these can make your work environment more accessible and bring out the best in everyone. Tula Consulting is on a mission to help organizations build more neuro-inclusive products and work environments. Tula does this by bringing curious minds to solve curious problems. Find out more by visiting tulaneurodiversity.org. Transcript PATRICK CASALE: All right. So, last week we talked about RSD from a very basic foundational level, and we asked for questions, and we got a ton. And we want to address the ones that we can today. So, Megan and I are going to sort through these, and we have some that we definitely want to do deeper dives on. We appreciate everyone submitting them. And it's definitely a really important topic. And I think one that we could have a lot of conversation around. MEGAN NEFF: Absolutely. Just side note, like, I'm really liking this Q&A format podcasts. We should do more of them. It gives us structure, which is actually kind of nice for a change. PATRICK CASALE: Yeah, I think when we introduce, like, topics, and then we can always ask for questions for follow-up so that we have episode ideas and keep the audience engaged too. MEGAN NEFF: Yeah, structured chaos. Okay. PATRICK CASALE: Yes [INDISCERNIBLE 00:00:56] when we started this. MEGAN NEFF: Should we start with some of the easier questions or dive into the hard ones? PATRICK CASALE: Oh, Megan. Where's my brain out today? Everywhere. MEGAN NEFF: I need a slow warm-up, my brain is still warming up. Let's start with some of the more concrete or easier-to-answer questions. PATRICK CASALE: So, I'm looking at the questions that we have. Where would you like to start? I think maybe one is how to open social media, again, when scared of RSD hangover days. MEGAN NEFF: Oh, yeah. PATRICK CASALE: I think this is a good question, because we spoke a lot about, like, entrepreneurial RSD. But this is more specifically for anyone who is just experiencing RSD and having to show up on social media. MEGAN NEFF: Absolutely, yeah. I think social media for probably anyone with RSD, if you're at all posting or commenting is going to be a really anxiety inducing experience open. I just watched like a one hour kind of training on this from Lionni Dawson. They are a autistic ADHD entrepreneur in Australia. And, first of all, just if you're an entrepreneur, you should check out their work because it's fantastic. But they had a one hour kind of training explicitly on kind of rejection, social media. And there was some other entrepreneur stuff, but there's a lot of stuff that could be applied. So, like one of thing she said that I love was, I think there's a visual, like, a bird in nature. And she was like, "You know, if I'm walking through nature, like, a bird doesn't just yell at me like, 'You asshole.' But on social media, right? Like…" Or not a bird, okay, I'm totally mixing visuals. She's like a person or bird, I don't know, people in real life don't just yell at you you're an asshole. But that sort of interaction, like, does happen in social media spaces. So, I think, one, just having this lens of the kinds of conversation that tend to happen in digital spaces when, you know, we're more removed from the humanity of the other, it does more easily take on kind of a toxic bend. So, I think just having that framework around our interaction with social media and digital spaces, in general, is really important. And then there's kind of a criteria she walks through of like, who is this coming from? Right? Is this like, an asshole on the internet who's just trolling? Or is this a friend and you're like, you want to consider it? But actually having a system for like this feedback I'm getting is hard. Like, who is this coming from? And considering that. So, I would just say, whatever your system is having some sort of process around how you engage social media, and contextualizing it, contextualizing these interactions that are happening, and then to figuring out like, is this how you want to be interacting socially with people? I encourage people to do like a week break and see what their mental real estate is like. For some of us as neurodivergent people, like we form some of our deepest connections digitally. But I do think we need to pay attention to how we're doing that, what spaces feel generative, what spaces don't. I realize this is way more like bird's eye view than like what to actually do when you're opening the app. This is more kind of meta how to have a relationship with social media in a healthy way. But I think when you have RSD, you just have to be thinking about these things more intentionally. PATRICK CASALE: Yeah, I think that sounds like good advice. And I'm almost thinking about, like, taking a step back and like putting different responses from different people in different buckets. Like, waiting the responses more or less because you're right, if you're walking down the street, someone is probably not going to scream that at you. I mean, most likely. But when you can type whatever you want, and just put it out into the world without really any repercussions a lot of the time. It really does create this social dynamic where it's quite polarizing and society is quite torn in so many directions. So, the likelihood of being trolled or just having people disagree with you, or have to jump in just to say something because they want to say something that can certainly lead to a response, and a shutdown, and more anxiety, and overwhelm. So, I think if you're able to, like you said, step back, contextualize, take a look at who you want to be having conversation and relationship with. And I agree with you wholeheartedly. Like, some of my deepest formed connections are via the internet and social media, some of whom I've never met in person like [CROSSTALK 00:05:49]- MEGAN NEFF: Yeah, like you and I wouldn't exist, this podcast wouldn't exist without social media. Like, I think I literally met you, I saw your podcasts with Joel. And I think it was in a Facebook group, and then we connected on Instagram. Like you and I would not know each other, this would not exist without social media, yeah. PATRICK CASALE: No, and I consider you one of my closest friends that is in my circle of people right now. But I wonder if we could ever get into, like, the existentialism and the layers that come with having to create like more of a callous skin or approach to social media. But I also acknowledge that social media plays a major factor in my business, so I know that I have to like sift through and experience some rejection at times too. And I've learned to deal with that before the common human, who's not a therapist, who's not entrepreneurial, who's not on social media for business, but is just on there for connection, it can feel like there is an inability to create community if it feels like there's just constantly rejection every time you open up Facebook, or Instagram, or whatever platform you like to be on. MEGAN NEFF: Absolutely, absolutely. Okay, I'm going to give a few more anchoring concepts. There's this idea from social psychology called upward comparison. This sounds really twisted. Every time I say it, I can't say it with a straight face. But what the research shows is we tend to do best when we do more downward comparison than upward comparison. This is why like, it sounds so like cringy of like, intentionally compare yourself to people who are doing less well than you. I don't love that as a like intervention strategy or practice. But I do think it's important to be aware of how much of your energy is spent in upward comparison. And social media is built for a lot of upward comparison, right? If people are posting like the highlights of their life, and you're comparing the, like, mundane moments to that, like we could talk about like how many likes, how many comments, but even just the experience, as in other people's highlights, and then filling in… Like your mind fills in the stories, that can also create or trigger RSD of just like, "Look at what all these other people are doing and are able to do." So, I think being aware of social comparison and upward comparison when engaging with social media is really important. The other thing, you know, boundaries, I think, become really important. What are your boundaries? Getting clear around that. When you post things, do you have comments on? Do you not? Do you get into hard conversations in social media spaces? Or do you not? Do you say, "Hey, this would be better in an email or this would be better in a phone call." So figuring out what your boundaries are. And then the third thing, impulsivity, right? A lot of us have impulsivity. Like, there's like a breathalyzer for phones where, like, some people will do… Have you heard of this where like, you have to breathe into your phone to be not drunk to- PATRICK CASALE: Like, there's [INDISCERNIBLE 00:09:02] you know, impulsively send drunk text messages and things that get them into trouble the next day. So, yeah. MEGAN NEFF: I feel like we need like a filter like that for like impulsivity, of like, how am I going to feel about this comment in 30 minutes tomorrow, especially if we're in a heated dialogue or if there's a lot going on socio-politically? Just knowing that we're more likely to have those impulsive comments come out, and then to consider your future self, which again, is going to take, I think, intentional practice for us because it's not something a lot of us do naturally of like, how am I going to feel about this comment tomorrow? How am I going to feel about people's feedback to this if I'm putting something out there that is, you know, one of those like hot ideas. PATRICK CASALE: I'm glad you named that because I actually found myself in that situation within my Facebook group last week, and I'm not going to go into the dynamics because the issues at play are just polarizing on all sides, and there's trauma and damage being done all around worldwide. So, I'm just alluding to something without alluding to it. And I had to step back and pause my Facebook group for two and a half days because I was mentally unwell. And I was struggling to keep up with comments, and like moderate, ensure that everyone was talking to each other respectfully as adults and as therapists, which doesn't seem like something I should have to do. But I also then realized I'm like, "Okay, this group is a purpose for like, how do we help each other through entrepreneurial journeys, and it's turning into something that I don't want it to be. How do we address all things? Right? And also, how do we show up authentically? How do we stand by our values?" So, I decided I will turn comments on limited comments. So, someone can only respond every five minutes, right? Including myself, which means that you have to take [CROSSTALK 00:10:53]- MEGAN NEFF: I love that. Yeah, you have to…Yes, yes. Yeah, because that like posting in a reactive space, that's where a lot of these things kind of pile on. And so I love that, like a forced kind of nervous system break between posts. I didn't know that was possible, yeah. PATRICK CASALE: Yeah. So, I turned on the limited comments, right? So, someone can only comment every five minutes. This allows me as the host, and the moderator, and the human to step back and breathe. This allows whoever is feeling really charged up to step back and breathe. And I think we can implement, like you said, these boundaries that allow for us to take that step back, to take that breath, to not respond impulsively. And also, not to react impulsively because that's what's happening in this world where we have information at the tip of our fingertips, and we can just respond to anything and any everything all the time. MEGAN NEFF: Absolutely. And then when we do that, and we have RSD, like, and we look back, and we're like, because I've definitely had that experience of like I'm in my reaction, and I am being impulsive. And afterwards, I'm like, "Oh, shit." And I replay the dialogue over and over and over. And, like, I don't feel like myself in those moments. And those moments become like kind of raw spots of shame. And so it's not just protecting kind of others from our spewing reactivity, but it's also protecting ourself of like how we're going to hold that memory and that whatever feelings or shame we have about how we acted in that moment. So, it's also protective of our future selves. PATRICK CASALE: Absolutely, 100%. And I think there are other things you can do too to create these boundaries. Like, you can hit the unfollow button on groups or on people that are not creating that feeling of safety, or energy, or connection. You can snooze people for 30 days. One of my favorite things to do is hit the snooze button. I have snoozed so many damn people that I did forget to unsnooze- MEGAN NEFF: I didn't know that was a thing. Okay- PATRICK CASALE: [CROSSTALK 00:13:03] and then also they come back up, I'm like, "Oh shit, I need to snooze them again." MEGAN NEFF: I just came up with an exercise. We should have everyone listen to this do this and you, and I should do it. Like, to log into a social media account very intentionally with a very specific lens, like a emotion nervous system lens, and to scroll but the thing you're paying attention to is what happens to you like when you see that content right? Is there activation? Is there anger? Is there like, "Oh I feel connected, and understood, and known." And yeah, to potentially like unfollow based on, I mean, that might sound harsh, but yeah, just based on like paying attention to what is your body telling you as you look at this content, and then is that someone you want to follow? I know on Facebook it feels a little bit more personal. Like, oh my goodness, this person unfollowed me or we're not friends anymore. So, I know that gets a little… But that's maybe where the snooze button's helpful. PATRICK CASALE: Well, the beauty of unfollow/snooze is not unfriend. There's a differentiation here, right? So, like, hitting unfollow means they'll never see your stuff again. But we're still friends. Like, they don't know that- MEGAN NEFF: I don't know Facebook very well anymore. PATRICK CASALE: Yeah, I spend too much time on Facebook, sadly. And that's where like the bulk of my work and audience comes from. And then there's the snooze button where it's like, I don't want to see these groups, or these messages, or these people for 30 days, and sometimes just simply hitting that button. And that would be the mute button on Instagram where you can mute and hide stories and posts from people too, but you don't unfollow them. And this allows for you to maintain the relationship, but just because you have a social media relationship does not mean that it's healthy for you to see their content, see their messages, see their posts every day. And if it's causing you harm, especially, if you're doing the exercise that Megan just suggested, it's a great opportunity to give yourself that detox experience or that ability to step away cleanly without hurting anyone's feelings, without like disconnecting from someone that you may have to have interaction with. So, I think it's important to always prioritize your energy first, because this stuff can really get on top of you and it can be quite depleting, and honestly, traumatizing. MEGAN NEFF: Absolutely. The other thing, I'm thinking way more basic here, but things like something I see come up a lot is like when you post something, and there's no comments or likes, like there's not feedback. And that's an RSD trigger, also. Like if you say an idea in a meeting, and it just like drops, and no one comes back to it. I would think having some self-affirmations, maybe we can make like self-affirmations for social media, that'd be cool content. But things like having some mantras of like, you know, how many likes I get on this post, like, doesn't represent how many people in my life care about me, or doesn't represent my worth, or my value. And so if those are the things that trigger you, I would actually work on developing or finding some self-affirmations that you could have, and have them on hand so that they can be front and center when the RSD story wants to take over your brain, you can kind of bring those back to mind. The thing with mantras and positive mantras that I always say, especially, for neurodivergent people, we have to believe them. If we don't believe them, they're probably going to make us feel worse. And sometimes it's hard for us to find mantras that we actually believe. PATRICK CASALE: Absolutely. I like that idea. I also love the idea, this may sound basic and simple. But I heart every single one of my posts that I make on Facebook and Instagram, and it just allows me to feel like, okay, I made this post, I made this content, I feel proud about it, so I like it. And like I've had other people start to mention like, "I've started liking my own posts, and it makes me feel significantly better about putting it out to the world." I'm like, "Yeah." I think that there are these little subtle psychological things that you can do to offset that worry, and that concern, that overwhelm. I also wonder like, how much of RSD… I don't know if there's any research about this at all, and I'd be curious, is connected to the RAS, the reticulating activating system, the part of the brain that was developed to kind of like mediate risk-taking behavior, and kind of tells you like, "Hey, there's danger ahead. Don't do that thing. Don't post that thing. Don't pursue that thing. You know, don't experience that thing, because it's risky, or it's scary." And, you know, I think the best way for me when I'm in these moments of like, major rejection sensitive dysphoria, I didn't just say that, right? MEGAN NEFF: You did. [CROSSTALK 00:17:53]. It feels like you should. Yeah, yeah. PATRICK CASALE: I should say, it feels like it should say sensation. I don't know why I feel that way. MEGAN NEFF: Or it feels like it shouldn't be rejection sensitivity dysphoria, I actually used to call it that. But it's technically rejection sensitive dysphoria, which doesn't feel right coming out of my mouth. PATRICK CASALE: I know. MEGAN NEFF: That's the technical term that's been used, I know. PATRICK CASALE: [CROSSTALK 00:18:10] rejection sensitivity dysphoria many times and I'm like, no, that's- MEGAN NEFF: I actually think I have it in print as that and then only in my last round of research was like, "Oops, that's wrong." PATRICK CASALE: Right. I don't even know what I was saying, doesn't matter. MEGAN NEFF: You were talking about fear, and inhibition, and RSD. PATRICK CASALE: Yes, that, and that, and that. Oh, yeah, when I'm in these moments, when I'm experiencing RSD, when I'm noticing being really, like, critical of myself, really taking to heart what other people are saying, or not doing, or how I'm experiencing feedback, I've got to get out and move. Like creativity and just being in movement and grounding myself, whether it be in nature, or going for a walk, or just getting out of this space because I think a lot of the times that RSD space, that energy, that actual physical presence of like feeling stuck and confined in it, if I can just put my phone down or my laptop in my house, leave the technology behind, go for a walk for an hour, like, just go do something else away from it, it really does allow me to center, and ground, and just regulate. MEGAN NEFF: I love that. I love that. Yeah, I often will, like, use the metaphor of like burning excess energy. And that's very much what it feels like when I have a RSD trigger. Like, I just feel like so much energy. And so, absolutely, if I can channel it towards something like a walk or something that's more grounding, that helps me move through that energy more. I'm still going to have the intrusive thoughts, I'm still going to have the rumination, and I have other strategies for that, but getting the kind of stress, anxious energy out is so important, which is why, again, back to social media, right? Like, you could be in class opening your phone and you see something that activates, or like right before a business meeting, then you've got all this energy and you're supposed to be sitting and focused. So, that's probably another, like, thinking through when do I open this? Would be another consideration. I also, yeah- PATRICK CASALE: And that would mean a good way you mentioned boundaries, you can put those restrictions on your phone, right? If you notice, like I am impulsively or compulsively checking my phone at these times, and it's creating distress, let's say it's in class, or at work, or whatever, put the boundary or limitation on the app that says like, I can't open this from this time to this time. At least, that gives you that, like, accountability check when it's like, oh, I click on Instagram and it tells me, "But you have it turned off for the next six hours." And I'm like, "Okay, now I have to make the conscious decision of do I want to continue on to Instagram? Or do I want to realize I need to step away from this for a reason because it's for my own mental health?" MEGAN NEFF: Absolutely, absolutely. Okay, I'm kind of decentering from this conversation to have another conversation, I'm noticing that we're like, let's start with a simple question. And we're like 20 minutes into talking about RSD in social media. And I think there's a reason we're still talking about it. I kind of wonder if we want to make this whole episode about that, and have RSD in three parts. So, it's a huge topic. So, do you want to just keep this conversation and we can get to the more complicated questions in episode three? Cool? PATRICK CASALE: Works for me. Yeah. And, you know, I think it's also, this topic, we're probably gravitating more towards the social media topic because that's where we spend a lot of our time. Not just for our businesses, like we mentioned, but for our communities, for connection. And I think that's really challenging. Like we mentioned, the connection piece, especially, for those of us who are neurodivergent, or introverted who have a hard time going out into the world and being social or our sensory systems are just overloaded constantly, if we're working from home, especially, we're probably spending a lot of time on the internet. MEGAN NEFF: Oh, yeah, absolutely. So much of our life is spent in digital space, which is why like, narratives like social media is good or bad, like, just don't work because it's like, well, no, it is. And then it's like, let's have more nuanced conversations about how we use it, about our relationship to this, about when we have these social interactions through this container of digital space what does that do to the like, relationship, to the interaction? Like, it's so much more complex than is this thing that we have good or bad? It actually reminds me, there's a study that just came out, and I've read the abstract, and I've skimmed it, but I haven't read it in detail yet. But it's a really interesting study. So, it's looking at autistic teens, and depression and anxiety. And so this is well-known in the research, right? Social media, and teen like depression, anxiety, like social media use tends to increase depression, anxiety. So, they did a study and they looked at autistic teens versus non-autistic teens. What they found was that for non-autistic teens, like how much a person was using social media, or maybe it was digital, maybe it was screens. I think it was more broadly with screens, increased depression, anxiety, but for autistic people, it didn't it. In fact, I think it decreased it, and then where the researchers get it is autistic people are using digital space differently. They're using the internet differently. And I thought that was so interesting. And I want to do more of a deep dive into that. But I'm also curious, I mean, we've been talking a lot about the ADHD experience. I'd be curious, like, yeah, how are autistic people using digital space differently in a way that is maybe helpful for mental health or at least less harmful? PATRICK CASALE: Yeah, I'm actually thinking of an example. I had my first major throat surgery two years ago. And I remember, like, laying in the hospital bed, like recovering and obviously, can't speak, because I'm like recovering and just had throat surgery. But I'm also isolated, right? Like, I'm just laying on the hospital bed. And I know that I'm going to be there for the next three days. And I was online, I was in my Facebook group and I was like, talking, and just sharing updates, and whatever. And several people were like, "Hey, you're supposed to be recovering. Like, you should get off of social media." Hence, like the social media is bad phenomenon/reality. And I got really like reactive/defensive in a way where I was like, "But this is how I connect with the world. This is not taking energy from me, this is actually energizing me to feel a part of something that I've created opposed to feeling isolated and alone, laying on this hospital bed for the next three days." Like, yeah. MEGAN NEFF: I love that. And that I feel like really gets at the heart of it, which I would say is belonging, like humans have an innate need to belong. Social psychologists have really picked this up in the last handful of years of, you know, adding into some of like Freudians innate drives, when he would say an innate drive is to belong. And there's actually been some interesting research that what they demonstrated was that a lot of anxiety, and a lot of pathological anxiety, because anxiety is not always pathological is connected to this need to belong. So, this is such an innate, built in need in us. So, that's what I hear you saying in that moment is like, "Wait, no, like I need to tap into belonging as part of my recovery. And that is what I am getting from this space." PATRICK CASALE: Absolutely. And I don't know if I was able to communicate it that succinctly. But what I did notice is like, I got immediately reactive, I started to feel very defensive. And I think this goes back to, maybe this is core as well for a lot of us who are neurodivergent, is not only that we need belonging, humans need belonging, absolutely, we need connection, we need to feel a part of. Like, that is just in our biology, in our genetic makeup. We need to feel seen, too. And I think that so often we do not feel seen, and we do feel overlooked, and we do feel like someone misses the mark of what we're trying to get across, or what we're trying to emphasize. And I know for me, that feeling is really where I shut down, that's really where I experience a lot of shame, that's really where I experience some self-loathing is when I'm trying to get a point across or where I'm trying to express myself. And it's just missing the mark, and the person is just not seeing it the way that I'm trying to communicate it. And I think that for me, that is a lot of, if we're talking about the autistic experience, a lot of what I'm experiencing in these moments when we're talking about RSD. MEGAN NEFF: We are experiencing the absence of being seen, of being missing. PATRICK CASALE: Yeah. MEGAN NEFF: Yeah, yeah, yeah. PATRICK CASALE: [CROSSTALK 00:27:28] situations, this can happen in appointments, this can happen in social experiences. MEGAN NEFF: I almost want to tease that out, but I mean, I think it is part of RSD, but that like experience of being misperceived. Something I've noticed, this is a clinical observation, I haven't necessarily seen research on this, but that I've noticed autistic people, many of them really don't like just the experience of being perceived, of knowing I can be perceived and knowing, you know, if I go on a walk someone can see me, if I am doing a performance, someone can see me, just see experience of being perceived. And I wonder how much of that… I mean, I think there's a lot of reasons for that. But I wonder how much of that goes back to like how frequently we are misperceived and how painful that is? PATRICK CASALE: Yeah, that makes sense to me. MEGAN NEFF: Just your reactivity makes sense too. Like, I was just thinking about like, how sad that is. Like, you went to this group because it was a place you do feel belonging. And then I know they weren't trying to tell you you're doing something bad, but I imagine that's kind of how you took it in to feel so unseen in that moment, when what you were getting out of the group was belonging, but then to be misperceived in your attempt to find connection and belonging. PATRICK CASALE: Yeah, I think it was like the situation, right? Like, I'm the moderator of All Things Private Practice. So, I set the stage, I set the tone, I create all the engagement, all the interaction, and I probably had a lead up to surgery of like, I'm going to be away from this group for a while because I'm having a throat surgery. I'm not going to participate, and blah, blah, blah, blah, blah. And then immediately, like, several hours after surgery, I'm like participating in said group. And people are probably coming from a place of like, "Oh, we're trying to look out for you, you said you were going to be recovering." So, I think it was an inability on my part to explain like, this is what I need right now. And I think that created this intense sensation of frustration. And like, I was not able to explicitly communicate my needs in that moment and just was hoping that people would just be like, "Yeah, let's talk about, you know, whatever." MEGAN NEFF: Which that's probably like a really powerful takeaway, right? That part of neurodivergent people finding belonging and feeling seen is the ability to articulate what we need, because what we need in any given moment might not be kind of the status quo. Like right now I need space, or right now I need a hug, or right now I need to engage in this digital conversation and that this is actually helpful for me. So, A, getting clarity about what our needs are and B, finding comfortable ways to communicate that. I think that absolutely wraps into the belonging conversation- PATRICK CASALE: For sure MEGAN NEFF: …of being seen. PATRICK CASALE: I want to model like, healthy communication around RSD as well, if you are okay with me sharing some behind the scenes of our friendship, and dynamic, and relationship. MEGAN NEFF: Sure. Yes. My anxiety just went up- PATRICK CASALE: Oh, no anxiety. MEGAN NEFF: …but like, I love this about [CROSSTALK 00:30:53]- PATRICK CASALE: I want to just like model it for people too. MEGAN NEFF: Okay. PATRICK CASALE: So, Megan, and I obviously share an Instagram account. And then we collaborate on posts for said podcast. MEGAN NEFF: Oh, my gosh. I almost texted you last night. Is this about last night? PATRICK CASALE: Yeah. But I want to frame it from last night's perspective to six months ago perspective. MEGAN NEFF: Okay. PATRICK CASALE: So, Megan's Instagram audience is significantly larger than my Instagram audience. It's a big source of your business and community. So, when we first started this podcast, we'd send collaboration invites, Megan would accept them. Well, half the time accept them, half the time not. MEGAN NEFF: Accept them on Fridays, I have a very specific schedule I stick to. PATRICK CASALE: And then she would remove herself from said collaboration. And I would get the notification like, Neurodivergent Insights has removed collaboration, whatever it says, And I'm like, "What the fuck?" And then I would say, "Okay, I respect Megan, and I appreciate our relationship. I cannot have this resentment/frustration or confusion." So, we talked about it. But I was definitely in RSD moment where I was like, Megan doesn't want to do this anymore together. I said something wrong. The video content isn't up to her standards, whatever the narrative was in my head, and then we talked about it. And you're like, "No, this is just how my brain works. And this is how I need my grid to look. And this is how I need my post to look." And I was like, "Oh, that makes a lot more sense. Like, it's not me, it's not us, we're still having a good podcast relationship and friendship." And that happened again last night. But I did not experience it the way I experienced it six months ago, because we talked about it. So, for those of you who are able to have these types of conversations, I think it's very useful in relationships, whether it be friendships, professional, intimate relationships. I think the struggle is for those of you who feel like you're not able to express this in a way where you're going to feel seen, heard, validated, or understood. And that's the part I would like to tease out too, is for those of you who feel like, I can't do that with people, I don't have access that way, or don't have the ability to communicate it in a way that's going to lead to feeling like we resolve these feelings or emotions. MEGAN NEFF: Absolutely. First, I love that you brought that up part. Like I did. I almost texted you last night to explain because like my profile grid right now, it's like divergent conversations, the middle column, and, you know, I'm autistic, I like… So, I almost texted you that I was like, "Oh, I don't want him to think." Yeah. But I love that that came up. So, a term popped in my head when you were talking that just like came to me, relational reality testing. I think when we have RSD, that when we have those relationships that can sustain that we're going to be like, "Oh, this happened and I want to check in around it." Can be so helpful, not just for that relationship. But it starts creating, I guess, like evidence or a narrative of like, "Oh, right, my mind is not always telling me an accurate story, or a helpful story." And so having those experiences. And then so for those situations where there's not enough trust to do that relational reality testing, if we can and have done those in relationships that are safe enough, where there's enough trust to do that, I think we can draw on those moments of like, you know, this last week this happened and my mind started telling this story and I found out it was actually about them. Maybe something similar is happening here, so we can kind of talk yourself through that perspective, I guess that perspective taking or that reality testing of like, maybe it's not about me. Like, we need a Taylor Swift song that's like opposite of the problem is me to like maybe it's not me. We need some catchy like, maybe it's not me song out there. PATRICK CASALE: I love that. I think I like that term a lot too. And I think that's perfect to describe. And you talked about this last week where we were like, take a step back, be the detective, or the investigator, hear about your brain and what your brain and your thoughts are doing right. So, like, I think it's important to look at it that way. Also that it makes me divergent to another celebrity. I shot my shot for both of us with Chloe Hayden and her Instagram. She's an autistic celebrity, author, podcast host [INDISCERNIBLE 00:35:20]. Nevertheless, they responded, which I thought was really cool. And I was like, "Oh, man, maybe I can get them on his podcast." But sadly, not. Chloe's commitments take her away from- MEGAN NEFF: Did that activate your RSD? PATRICK CASALE: No, I never expected a response. So, it was actually like, "Oh, cool. At least you read this." I also shot my shot with Dr. Devin Price, have not heard back. MEGAN NEFF: Well, speaking of social media boundaries, he's someone who has really good boundaries. And so, like, actually, I think I was inspired by him. Like, I don't know if it's changed. But back when I was more on there, like he rarely had comments on if ever. I don't think he does DM so I'm not surprised we didn't hear back. And I think it's partly because of those rock solid boundaries that he models and has. PATRICK CASALE: Yep, I agree 100% because that's the message I got. DMs are not allowed to this account. So, you know, I will continue to try. MEGAN NEFF: Yes, probably, I would guess email would be [INDISCERNIBLE 00:36:30]. PATRICK CASALE: Yeah, I tried to find it, couldn't find that but- MEGAN NEFF: That's probably also smart. PATRICK CASALE: Boundaries are important. And I think that Megan is someone who really has good boundaries. Like your email, auto response, your social media comments turned off for the most part. Like, you are protecting yourself and your energy. And I think that that's a big part of this, right? So, the ability to take that step back, create the boundaries that work for you, remove the interactions that are causing you harm, or distress, and trying to figure out how to channel that energy, like you said, that excess energy that you can have when you're in this RSD space, because we do need to burn it off in some way. Otherwise, it can destroy you in those moments. And it can lead to impulsivity, it can lead to things that you would like to take back, it can lead to destruction in relationships too that you care about. MEGAN NEFF: Absolutely, it can. Yeah, yeah. That was a beautiful summary, like paragraph, and I kind of just want to end it there. But I feel like I'm going to ruin it, because I had a thought, I had an association. PATRICK CASALE: Go ahead. MEGAN NEFF: I think we often have to work through some of our RSD to be able to create boundaries. I think the reason I waited till I was absolutely burnt out, overwhelmed, and struggling with health before I put up boundaries was partly because of my RSD of like, but people will be upset, but I won't be accessible. But like, that made it hard for me to go into digital spaces with boundaries. Or I have to respond to every email, right? Like, because of the RSD. So, that's a tricky thing here. Boundaries are really helpful for RSD, but we have to work through a level of it to be able to cultivate those boundaries, or just get burnt out enough that like you're like, "Okay, fuck it, boundaries." PATRICK CASALE: That's where I got to. I mean, I learned some from you, you know, and your boundaries. But I got to, and I'm glad you just named that because that's honestly very, very important. It allows for us to not minimize the experience. Like, I think that you have to work through it to create the boundaries for sure, or be working on it. And you may be working on it, because like you said, you get to the place where it's like, "Fuck it, I don't care." And that's the place I got to for a while. And maybe that's the place I'm in is like when I meet with my therapist, she's like, "So, the ADHD part wants to create, create, create, the autistic part looks at the calendar and, you know, is already exhausted and frustrated about the planning." But then I got to this place where both parts had no interest in doing any of it. And I think that was the fuck it moment where it was like, "Yeah, I'm not I'm not responding to every DM, or consult request, or email anymore. I'm just going to respond with blanket statements or referrals outward because I just cannot do it. And it's unfortunate that so many of us have to get to that place, because there's so much connection, we talked about attachment systems last week with feeling useful, feeling responsive, having value based on feeling responsive or useful, working through that internalized sensation of I'm not going to be valuable, I'm not going to be useful, people aren't going to think of me, people aren't going to want to connect with me if I put these boundaries in place. So, it's a lot of unlearning. And it's a lot of healing when you're working through how to navigate this process. MEGAN NEFF: Absolutely, absolutely. If there is one gift to burnout, and I feel weird, calling it a gift, maybe growth edge to burnout, it is, if it propels you to build a life that works for you, right? Like so many of us, the life we're living doesn't work for us, and we get burnt out. And if the pattern is like, live that life, burnout, kind of recover, go back to that life. Like, that's just going to be a perpetual cycle. But if that burnout is the thing, that's fine. Like, okay, I've got to do something different here. And if that becomes the instigator for cultivating a life that works, and like boundaries are a big part of that, that is, yeah, I guess, kind of the gift of burnout. And again, I feel we're using any kind of gift language with burnout, because it's atrocious, but… PATRICK CASALE: I think it's illuminating in a lot of ways, though. I think it kind of is illuminating into what your next steps are, when you get to that level of burnout, where it's like, fuck it, I don't care anymore. I have to set these boundaries, otherwise, the results are XYZ. MEGAN NEFF: It's kind of like grief. Like, I think about those moments in life that break you wide open, which are those moments that invite you into transformation if you can accept that invitation. And like grief absolutely does that. I would say burnout also does that. PATRICK CASALE: Agreed. Well, I think that you just added to my summation perfectly. So, for those of you listening, lots of good takeaways here, and things that you can implement. I hope we answered the one question that we set out to answer- MEGAN NEFF: One of the questions we got to. PATRICK CASALE: DR. MEGAN NEFF: We start with the easy question and talk for an hour. Divergent Conversations is out every Friday on all major platforms and YouTube, and we will do part three, simultaneously. Goodbye.
Do you ever feel like you are more sensitive to rejection, teasing, criticism, or your own perception that you have failed or fallen short? Or maybe you know someone who seems to be particularly hard on themselves and reactive to others? Everyone experiences some reaction to rejection, but individuals with RSD find themselves more likely to perceive harsh rejection and criticism where there might be none and can sometimes feel like they live in a chronic state of rejection. In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, dive deep into the complexities of rejection sensitivity dysphoria (RSD) and its impact on neurodivergent individuals and the people around them. Top 3 reasons to listen to the entire episode: Understand the impact of RSD and how it can lead to chronic pain, affect relationships, and cause avoidance behaviors in professional and personal settings. Hear about some ways that RSD can impact relationship dynamics and major life changes and decisions. Learn about treatments and strategies to help with RSD, as well as ways to adapt therapeutic modalities to be more effective with neurodivergent individuals. Rejection sensitivity dysphoria can be difficult to navigate both internally and externally and can have a profound impact on the way you experience the world, but there are ways to address it that can help with reducing the intensity around feelings of rejection and finding ways to improve relationships through collaborative communication around RSD. Resources plus Exclusive Coupon Code Dr. Neff's Rejection Sensitive Dysphoria Workbook Bundle (Clinical Use): https://neurodivergentinsights.com/neurodivergentstore/p/rejection-sensitive-dysphoria-clinical Dr. Neff's Rejection Sensitive Dysphoria Workbook Bundle (Personal Use): https://neurodivergentinsights.com/neurodivergentstore/p/rejection-sensitive-dysphoria-bundle Use Code: “DivergentConversationsListener” To get 20% off anything in the shop, including the RSD bundle. Dr. Neff's free blog posts on RSD: https://neurodivergentinsights.com/blog/category/Rejection+Sensitive+Dysphoria The EFT attachment infinity loop can be downloaded here: https://neurodivergentinsights.com/couples-resources A Thanks to Our Sponsor, Tula Consulting! ✨ Tula Consulting: We would love to thank Tula Consulting for sponsoring this episode. Workplace communication can be messy. Considering the lens of neurodiversity can be helpful for understanding this. Maybe you found yourself frustratedly typing "per my last email" in an office communication, perplexed about how a colleague or client doesn't seem to understand your very clearly written email. Consider this. Visual information processing isn't everyone's strength. Perhaps a quick call could make a world of difference. Or how about including a video or voice message with your email? And this technology exists! Simple steps like these can make your work environment more accessible and bring out the best in everyone. Tula Consulting is on a mission to help organizations build more neuro-inclusive products and work environments. Tula does this by bringing curious minds to solve curious problems. Find out more by visiting tulaneurodiversity.org. Transcript PATRICK CASALE: Hey, so we are about to do an episode on RSD today, which I think we are going to turn into a two-part episode. One, because there's so much to cover. Too, because Megan just wrote a 170-page workbook on the subject. Three, because I am unbelievably jet lagged and haven't slept in days. And Megan is not feeling well and is sick. So, we're going to do what we can today to kind of jump into the introduction to this topic. But a lot of you submitted questions to our Instagram, a lot of you submitted questions in general, and we want to cover all of them. We just may not get there today. But this is certainly a topic that we are going to circle back to. So, because Megan just wrote a 170-page workbook, I'm going to turn it over to you to kind of set the stage. MEGAN NEFF: Yeah, well, one problem is when you've been swimming in the literature it's hard to know where to start the conversation. So, yeah, how do I synthesize RSD? Well, RSD stands for rejection sensitive dysphoria. Yeah, I guess I'll go over the history of it briefly. So, it was coined by Dr. William Dotson, who if you don't know who that is, like, I recommend Googling him. He's got a lot of really awesome articles up. He's got a lot of webinars that are free through ADDitude Magazine. And he's, like, done a lot in really emphasizing kind of the emotion regulation struggle that often happens with ADHD. But yeah, he's the one that coined RSD. Although, you could actually go back to the '60s and there was a psychiatrist before him, Dr. Paul Wender, who was describing symptoms that now we realize are RSD, who's using the language of atypical depression. But looking back, we actually see, like, okay, that was undiagnosed or often undiagnosed ADHD. And it was RSD and emotion regulation struggles that he was describing. So, there have been breadcrumbs of this in the literature since the 1960s. But it was really in the last 20 years or so that it's become an actual term. It's not a diagnosis. It's not something you'd be diagnosed with. It comes out of the ADHD literature, so there's some debate, like, is this a specifically ADHD thing? And there's several people that say, yes, this is like a distinctive ADHD thing. So, that's the kind of, I guess, clinical definition of RSD. Oh, I guess what it is. So, the question that Dr. Dotson would ask his… and he's a psychiatrist, he's not a psychologist, he's a psychiatrist. But what he'd ask his people when they come in is this question, "For your entire life, have you always been much more sensitive than people you know to rejection, teasing, criticism, or your own perception that you failed or have fallen short?" And he said, 99% of ADHDers would have this like, yes. And not just, yes, but like, "Oh, my gosh, I feel like you know something about me that I've been so embarrassed to tell the people in my life." And then about a third of ADHDers said, "This is the hardest part of ADHD to live with." So, it's pretty significant when we think about kind of the clinical picture of ADHD. Okay, I'll take a breather there. So, that's, I guess, the clinical definition, is it's a really intense, physical, emotional response to the perception of rejection. Or even, like, I guess self-rejection in the sense of like, I didn't live up to my own standards or bar, yes. PATRICK CASALE: And this is very different than other forms of rejection. And I think that's important. Like, you went over that in your... was it Misdiagnosis Monday that you created the diagram for recently? MEGAN NEFF: Yeah, so I created a Venn diagram comparing, like, what is normative rejection sensitivity and then what is RSD? And that's actually typically where I start the conversation. Earlier I was like, "Oh, I don't know where to start the conversation. I usually start with like the evolutionary history." Rejection sensitivity is like a human experience and thank goodness it is. So, if we look at it from an evolutionary lens, the idea that belonging to a group literally meant survival for most of human history. You know, we're pack creatures, and we're not the biggest or strongest species, but it's our ability to think together, to be together, to problem solve together that has meant humans have survived. So, the thinking goes, and this is, you know, any evolutionary psychology is going to be an oversimplification, but kind of the thinking goes, so our anatomy hasn't caught up, right? So, if we perceive rejection, we can experience that as a threat to belonging, therefore a threat to survival on a very kind of automatic level because it's like it's baked into our DNA. And so we haven't caught up to the fact that we don't actually have to belong to the group to survive in modern life. But our body chemistry or our nervous system hasn't caught up to that. So, I like to frame, like, rejection sensitivity through that lens of, yeah, this makes sense as a human experience and it's a spectrum. Some people have really intense. So, like, if you have RSD, you're going to have a really intense rejection sensitivity, whereas other people have more mild rejection sensitivity. But yeah, that is what I did on the Venn diagram and the articles. I walk through, like, this is what normative rejection sensitivity looks like and this is what RSD looks like because RSD is above and beyond that normative sensitivity to rejection. PATRICK CASALE: Yeah, thanks for setting the stage like that because I think it's important to delineate between the two. Like, it's absolutely a process of human experience to feel hurt when they feel rejected, or to feel vulnerable, or to feel insecure, or to feel unsafe. But this takes this to a whole new level, right? Because the symptomology, the struggles that come with RSD can really intensify very quickly and be unbelievably debilitating. MEGAN NEFF: Absolutely, absolutely. Yes, debilitating. And like, yeah, I think that captures it. And that is part of, like, that's one of the ways I distinguish between, like, RSD versus normative of how much is influencing the person's decisions or daily life. And if, like, a fear of rejection, a fear of putting ourselves out there is significantly influencing our decision, that has a lot of control over our day-to-day. And typically, it's not a great thing for our well-being when fear is controlling. There's a lot of avoidance that can often happen for people when they have RSD. Like, avoidance of social situations, or putting themselves out there for like a job promotion. So, there can be career implications, romantic implications. Like, I can't even imagine asking someone out on a date, right? What if I'm rejected? So, yeah, it can be really debilitating. PATRICK CASALE: I see it show up a lot in the coaching that I do because of the entrepreneurial side of my business with a lot of my ADHD coaching clients, where it's really hard to even put themselves out there on social media, it's really hard to create content, it's really hard to put their own spin on something because God forbid someone comes in and critiques it or says something that really sends them down that shame spiral. MEGAN NEFF: So, I actually just had a really interesting consultation around this. And right now I'm working with a psychoanalyst because I'm wanting to… this is a little bit of a divergent trail, I'm wanting to… So, as a psychologist, when I work one-on-one with people, I have a relational framework for the work I do. And I've realized having a framework is really helpful. So, I'm wanting to figure out how to adapt that relational framework to what I do as a public psychologist. So, I've been consulting with… a lot of people consult with like business coaches, I'm consulting with a psychoanalyst to figure out how do I bring a relational framework to the work I'm doing? PATRICK CASALE: That's right. MEGAN NEFF: But part of what came up was this, I've realized in writing this workbook that RSD is probably the number one block when it comes to, especially, social media because social media is just such a vicious space right now. It can be, I shouldn't make global statements, it can be. And one thing I was talking about was how as an autistic person, my ideas, and my emotions are not separate. So, as an autistic ADHDer, right? Like, and I see that a lot with autistic people, our ideas, and our emotions, our ideas, our values, and our personhood are so integrated. So, when I put my ideas out there, I'm putting a lot of myself out there, and then you layer on top of that RSD, damn, that's hard. PATRICK CASALE: It is. That's such a great way to kind of just put that out there too. And I know that you've been on the receiving end as I have too, your audience is significantly bigger, so you probably receive more of it, but I've been on the receiving end of text messages with you where someone said something nasty, or really like offensive, or just inappropriate, and how debilitating… why do I keep using that word? How painful that [CROSSTALK 00:10:1]1- MEGAN NEFF: ...today. PATRICK CASALE: I don't know, I feel like my brain is moving at like MEGAN NEFF: Yeah, we're both struggling. PATRICK CASALE: [CROSSTALK 00:10:19] but how painful that experience has been for you and how it makes you kind of retreat inward, and then a void. MEGAN NEFF: It does. So, I just recently switched things up. And it's actually been so good for my mental health. Like, the way I joke about is that I've emotionally broken up with social media because what I was noticing, I noticed a few things and it's so helpful to have the RSD lens. Like, probably for the first six months, when I was growing, it was really exciting. I'd open the app, I'd be excited to see like how many like, you know, because I had these little posts that would just go viral. And it'd be exciting to see that. And then it shifted to where I'd open the app and I would dread like, "Oh, no, did it go viral?" Or like my stomach would drop every time I open the app. Or every time I open a DM or the comments, like, half the time I literally kind of open the comments because I would feel so stuck of like, what am I going to see? 99% of the comments are really incredible things to read. But of course, those aren't the ones that stick to my brain. It's the 1% of it. Again, I want to tease apart, some of the comments that are critiques have been really, really good learning experiences for me. And then some of them are just like rude, and unkind, and come with a lot of hostility. And I do value the ones that are hard to take in but those have been good learning experiences for me. Yeah, I got to a point where I would feel physically sick opening the app. So, what I've done is I've turned comments off. I have an auto DM. And I will go days without opening the app. So, I will open it on Monday and Wednesday when I post. And you know how you can see on your phone how much time you've spent, like I spend like five minutes a week on Instagram. And it's amazing. And I feel like I've so much of my nervous system back, I have so much my mental real estate back. And I'm reinvesting that. I've launched my more community-oriented membership. And I'm reinvesting that energy in people who are really committed to showing up and engaging authentically. And I cannot explain what a difference that has made for my mental health. PATRICK CASALE: I'm really happy that you've done that for yourself because I know the amount of energy it takes. I also know how impactful it becomes. And it becomes a situation where you have… I, typically, in these moments will shut down, I will avoid, I'll turn everything off, I have to disconnect from everything. And then you're right, there's like this fearfulness of even opening the app back up. There's this like overwhelming dread sensation of like having to look at anything where you may perceive it in any sort of way that feels critical or… and not in a bad way because criticism is not always a bad thing, like you mentioned. But there are just people who like to just say stupid shit just to say stupid shit. And you have free rein to do that on the internet. So, it becomes really hard for people who are in online practices who are therapists who will have to network virtually, who have to show up online because that can really intensify very quickly and all of a sudden that leads to that shutdown or the disconnection. MEGAN NEFF: Yeah, yeah. No, I love how you're connecting it to entrepreneurship because I think there's a lot of, particularly, ADHD entrepreneurs and RSD is very ADHD thing. And like, that double-edged sword of, yeah, like, you have to put yourself out there to be an entrepreneur. And oh, my goodness, if you put yourself out there, you're going to face criticism. You just are. Like, you can't please everyone. And something I like that's a mantra I remind myself, but when you have RSD you have to. PATRICK CASALE: Yeah, you're right. And that's why I keep bringing up the entrepreneurial side is because so many ADHDers that I know are entrepreneurs and it makes sense. Like, it works with the way the brain functions, and the creativity, and the spontaneity, and all the innovation. And like, it's also really challenging because it is about showing up. And you mentioned something before that's sticking in my mind about like, the inner connection of like the inner woven thought, feeling, experience for autistic people. And I get that very much and so much of ourselves when we put ourselves out there in that way, is like this is an extension of how I'm feeling and how I'm moving through the world. So, for it to be picked apart at times of like, "Oh, well, this isn't that character, this doesn't sound right, or like, I don't like the way this came across." All of a sudden it becomes this, like, sensation or this experience of my personhood, like, my sense of self is being under attack right now. And that makes me want to, like, bury my head and hide. MEGAN NEFF: Yeah, absolutely, absolutely. And then, again, I guess, to bring it back to the AuDHD experience, like, another thing I see and I experience as an autistic person is like the fear of putting something out there and it being factually wrong. Like, I think that's one of my biggest fears. And I see that with a lot of autistic people. Like, what if I write something, and then in five years new research comes out, and like that language, and that, like, I've been talking to my spouse a lot about… my business has just become a huge source of stress if I'm working way too many hours, and I'm chronically sick. So, something has to change. And one of the things I was realizing and talking with my spouse, the reason I'm so stressed is I'm frantically because I have this membership that I've historically published a workbook a month that also means I've got like 20 workbooks, and I'm like, what is wrong in that, that I now want to go back and update? Because the idea of like, anything being out in the world that has my name on it, that might be factually wrong, from an autistic lens is also, like, very unfathomable. PATRICK CASALE: And I imagine how unmanageable that becomes too, that it's like, "Oh, I have a 170-page workbook. Now I have to go back and add or edit and revise." And like, very time consuming, obviously. But, you know, Luke is obviously a God sent too, so… MEGAN NEFF: Yes, that's what he is [INDISCERNINBLE 00:16:44] one. But yeah, so I think, especially, the autistic ADHD experience, it gets complicated because there's a lot of different layers that we can feel rejected or criticized. So, this, I think, is a really important part of RSD. And I think this becomes an important part of learning how to work with RSD when our brain is hyper-vigilantly scanning for signs of rejection, what it means is that, like, the wiring around that is going to become like, and the neural pathways are going to become really forged around, like, perceiving rejection, which means we're going to perceive it when it's not actually there. And this is where I think partnerships and friendships really suffer. Like, let's say two ADHDers, right? So, like, someone forgets to call or someone forgets, like, because working memory, it can be a struggle, and the person with RSD that might trigger, like, that person doesn't care about me, and it could trigger so many narratives, when it's really like, oh, something came up and they forgot. And I think that is part of what causes so much pain around RSD is it's like someone is perceiving it chronically when they're not actually being rejected. PATRICK CASALE: That's what I come across the most too when people are asking questions around RSD is like, well, if I'm moving through the world where I'm constantly feeling this pain of rejection or experiencing it this way, how do I then move through the world? Because it's so hard to maintain friendships, working relationships, professional relationships, etc. when I'm experiencing RSD so intensely in all of these situations. MEGAN NEFF: Yeah, yeah, yeah, yeah. I mean, for a lot of people it's like, okay, it's easier just not to put myself out there. It's easier not to be in a relationship. It's easier to make my world small. And that's a really sad solution. PATRICK CASALE: It is because there's so many feelings of isolation, and loneliness, and disconnection as there is for a lot of neurodivergent people, so intentionally shrinking your world to protect yourself from potential harm, it's really, really hard. MEGAN NEFF: Yeah, yeah, yeah, yeah. We haven't even talked about that aspect of RSD of, and this is why, like, you also hear autistic people talk about RSD. I'm really curious, we haven't seen a study on this but I'd be curious if we did a study that controlled for the ADHD because we know so many autistic people have ADHD, like purely autistic people, would they still have RSD? I'd love to see a study on that. But the neurodivergent experience of just perpetual miss-attunement, like we have had more rejection. So, that's another complicating factor, right? We're more likely to perceive it, but partly that's because we are more likely to have experienced social victimization and rejection. And then it becomes this kind of vicious feedback loop of if we show up anticipating rejection, we might have developed psychological defenses and ways of being in the world that actually make it more likely for us to be rejected. And, yeah, it's vicious. PATRICK CASALE: We've talked before about, like, how we always lay out the pain points because so much of the experience is pain points, honestly. But if we're saying this, right? And then we take a step back from the clinical lens for people to say, okay, this is my experience, this is my world, this is every day, this is how I move through relationships, this is how I perceive conversation and feedback. What do we do? MEGAN NEFF: Yeah, no, I mean, there are things we can do. And I'm going to kind of put it in two buckets, psychopharmacological. Okay, big words and brain fog don't mix well today. And then kind of psychological treatments or therapeutic, like, more traditional type treatments. And again, this comes from Dr. Dotson's work, but he has talked about, so there's a class of medications, I'm going to actually look it up so I make sure I'm using the right words, that it's a non-stimulant medication, that it's a class of medications that's sometimes used for a for ADHD. So, alpha agonist is the class, and clonidine and guanfacine are the two medications within that class. Okay, this is really technical, but both have about a 30% response rate. So, a response rate when we're talking about medication is kind of significant reduction of symptoms when the person is on it. So, 30% isn't great. But these two medications are different enough that if you try one, and it doesn't work, and you try the other, there's about a 55 to 60% response rate that one of these will work for you. That's actually a pretty good response rate when it comes to medication. And Dr. Dotson, and again, he is a psychiatrist, but like, he will talk about how he's worked with people who have maybe been like, psychoanalysts for 10 years. RSD wasn't touched, they go on medication, and it's like they ask a girl out for the first time or they apply for that job. Like, it provides emotional armor that they needed. A, to just get out of that avoidance suit, but B, to actually be able to engage like the talk therapy tools. We often need some sort of armor or just regulation to be able to engage the tools that are useful. So, I think that's a really helpful frame just to realize, like, there are medications out there that might be helpful for some people. PATRICK CASALE: That is definitely helpful. And then, you know, on the other bucket, the psychological framework and toolkit that we're talking about, what are strategies that you think are useful? MEGAN NEFF: So, yeah, like a lot of kind of the traditional emotion regulation strategies, but then like, a little bit more targeted. First of all, I think, learning about the rejection sensitivity lens, I say this a lot, and sometimes it gets big reactions, but like, we have to learn to not always trust our minds. Like, our minds are not always helpful. Sometimes, like- PATRICK CASALE: Totally. MEGAN NEFF: Yeah, our minds love attention. And so sometimes it'll spew the most mean, negative, alarming things at us to get our attention. And this is one area where I think learning to not trust our minds becomes really important, realizing, okay, I am prone to have like a rejection goggles on or rejection lens on, which means I'm going to see it when, like, maybe my partner isn't actually trying to reject me, or maybe my boss is genuinely giving me… like, is intending good for me in this constructive feedback. So, I think one really getting clarity on that lens so that we can identify when that's on so that we can unhook from it a little bit more. I would say that's the first step. Other steps like emotion regulation strategies. So, again, if we put this back into the perspective of a threat response, our nervous system, our stress state, our fight, flight, freeze, fawn wherever we go in our nervous system is going to be activated when we're perceiving rejection. So, I'm a big fan of like nervous system mapping, which I think that comes from polyvagal theory. I don't love all of polyvagal theory, but I like this idea of nervous system mapping of like, let me map where I am in my stress response, and then figure out what tools you need. So, if you're someone who goes, like hyperarousal, you would need downregulation strategies to kind of help cool the body off. So, emotion regulation strategies. And then, also, things like knowing your rejection triggers, knowing your, like, what I call raw, but what I didn't come up with the term, but raw spots. Like, what are those raw spots or those areas in our life where maybe we have some attachment wounds, or some relational wounds so when they get bumped they pull a big reaction from us, getting a lot of clarity about, like, what are your rough spots? Why? What's the history of those? What happens to you when those get activated? So, also, like a ton of insight, right? Insight into your relational patterns, into your psyche. I'll stop there, that was a bit. There's, I'm sure more. PATRICK CASALE: Those are good to start out with so that people can implement this stuff and start, you know, doing their own research or incorporating these into their day-to-day because I think it's important to be proactive, too, because I think you're mentioning so many important tips right now and the raw spot suggestion, great suggestion, right? Because if you know what creates these triggers for you, then you can work on, you know, preventing, or at least putting into practice something that will help regulate when you're going into events like that or moments like that. I actually don't like at all, and I just want to be clear about this, CBT but REBT, rational emotive behavioral therapy, when you do like the ABCDE model of like activating event, behavioral challenge, challenging belief disputation, because what we're talking about is like, my wife's not picking up the phone, she must not love me anymore. And we're jumping to these conclusions, we're catastrophizing a lot, and I like that you said, don't always trust your brain because there are always, and I don't want to use blanket statements either, there are often alternative explanations for behavior. MEGAN NEFF: Yeah, yeah. Wait, so are you saying you don't typically like CBT but you do like that CBT exercise? PATRICK CASALE: Yeah, I like that exercise because it allows you to say like, what's the activating event? Okay, she doesn't pick up the phone. My immediate reaction is she doesn't love me anymore, right? Like, and then you've kind of processed it through that lens of like, but what are the other scenarios here for not picking up the phone? MEGAN NEFF: Yeah, I'm glad you say that because I'm with you. And that, like, I tend to not default to CBT, especially, for neurodivergent or anyone who's had a marginalized experience in the world because I think it can be really invalidating. But then there's these tools from CBT that I really like. And I'm like, well, if you put it in context, this can actually be really helpful. And I don't want us to, like, throw the baby out with the bathwater. So, I'll talk about that too, like putting your thoughts through a reality filter. And there's certain questions you can ask to be like, okay, is this thought helpful to me right now? Is it like, yeah, are there cognitive distortions that are, like, influencing this? Kind of that detective work of like, let me become a detective of my own mind, and my own experience, and my own thoughts, which even just the act of stepping outside of the experience into that observing detective, ideally, non-evaluative, non-judgmental mode is therapeutic, no matter where you land on the reality filter of the thought. PATRICK CASALE: Absolutely, yeah. And I'll just piggyback on my statement of saying I'm not a fan of CBT. I know how harmful it is for marginalized communities and for neurodivergent folks in… oh, we could have a whole episode on therapeutic modalities that don't work well for neurodivergent human beings. But if you put it through that lens, and I like that you use that word, you can start becoming that detective, you can start, like, taking that step back because it's really helpful when it feels like almost everything is creating this intensification of experiences that leaves you feeling like you're not able to participate in your life because you just feel like you can't put yourself out there or you can't, you know, speak your mind, or you feel like you just can't show up the way you want to show up. And I think that's really challenging for a lot of ND folks, too, is like, if I can't show up authentically, that really feels uncomfortable and that feels really painful, too. MEGAN NEFF: Yeah, I mean, that then ties into like masking and RSD which that can be its own, like complex conversation. But yeah, if masking helps reduce RSD you could see how like, okay, I'm going to say this, but then I'm going to unpack it, masking becomes a form of self-care. And I don't mean that masking is actually self-care, but like, in that option of like, I'm either going to, like, spiral, like, the fear of I'm going to spiral with RSD because I'm going to show up authentically and you know, the fear, it's not going to be perceived, or I'm going to mask, I could see how for someone masking feels like the less energy cost of the two. And again, that's assuming that masking is like a choice, which it often is not. But it's just that is an interesting, like, yeah, the masking RSD dynamic. PATRICK CASALE: Yeah, absolutely. So, I think we could take this in a variety of ways. And I think we could talk about, like, partnership and RSD, I think we could talk about so many different avenues. I also don't know how your energy is and I want to check on that. MEGAN NEFF: No, I actually feel like I've talked a lot about like content creation in RSD, which is not going to be, like, the majority of people listening to this. So, I'd love to spend some energy to generalize it more to, yeah, relationships, workplace, things like that. PATRICK CASALE: Yeah. MEGAN NEFF: Absolutely. PATRICK CASALE: So, let's talk relationships. Whether it's, you know, different neurotypes, same neurotype, one person is experiencing RSD, one person's not, that can be really challenging because conflict can arise in relationships, and often does. And it can feel really, really painful to feel like you are being critiqued, or you feel really vulnerable, or you're, you know, feeling like you're spiraling often in conversations with your partner. And I imagine then the other partner would then feel that challenge too of like, I don't even know what I can say. MEGAN NEFF: Yes, yeah. I mean, I think it's painful for both people involved, right? Because if one person feels like they're walking on eggshells, right? That's kind of the famous metaphor, that is not healthy for a relationship if there's not the capacity to talk openly about what is happening, and if hard conversations spiral into, like, emotion dysregulation and conflict. So, that is a really painful scenario for both partners involved. Yeah, absolutely. With relationships, I'd be curious to kind of like overlay attachment style and RSD. And attachment theory is one that like it gets critiqued for being oversimplified, but I find it a really helpful lens, even with it being, if people know like, okay, this is probably an oversimplification, I still find it really helpful and to someone who has RSD and also, anxiously attached, like, there's going to be some big emotions when they perceive like an attachment injury or where they perceive they're being criticized. And again, kind of, I'm mapping, I guess, is my word today, but mapping out what are the attachment styles. There's a really great exercise from EFT therapy. It's infinity loop. I have a link on my website, I could link it in our show notes. But it's essentially you map out, like, what happens in the aftermath of an attachment injury. Like, what story does each partner start telling? What did they start doing, right? So, some partners will retreat, some will go to work because it's like, we have to fix this. But then that activates another story, like a secondary story. So, you can map out like, okay, what happens to us in an attachment injury. I think exercises like that become really helpful because then you can understand and name the chaos without a map of like, what is happening here? It's really confusing. PATRICK CASALE: Yeah, yeah, absolutely. And I'm glad you mentioned that because I think recognizing the attachment style and the pattern and then being able to, again, step back when you're not activated and look at it, and say, okay, now I get a sense of like, what's happening in these moments because what you don't want to do, like you said, it's not a healthy partnership if you're walking on eggshells if you feel like you can't have communication, and it's very different experiences on either side, so each partner is experiencing this painfully but very differently, too. MEGAN NEFF: Absolutely, absolutely, yeah. Like, I think ideally the RSD could almost be externalized and be talked about as like a thing in the relationship, right? Like, okay, we just hit an RSD wall, or like, we just triggered the RSD. I love externalizing both and like individual techniques, I do it all the time. Like with, oh, my mind is doing this thing, right. That's it. I'm externalizing it. I'm making it less connected to me. I'm saving the relationships when we can externalize it and it's like, let's collaboratively solve the struggle we're experiencing around this RSD trigger versus you versus me. That really changes the conversation. PATRICK CASALE: It feels much more like teamwork at that point in time. And going back to your detective analogy before, like, you're both putting on that detective hat of like, how can we solve this together? Instead of you're injuring me versus I'm experiencing our relationship this way. MEGAN NEFF: Yeah, yeah, exactly, exactly. Yeah, yeah, that makes such a big difference when partners can do that, like stand side by side, look at the dynamic together versus… I see that a lot, so much like accusations, and kind of like, I mean, our narcissism episode just came out. Like, you are a narcissist, or you're gaslighting me. Like these huge words get thrown out, or can get thrown out when we're looking at the other person as the problem versus looking at the dynamic, or the issue, or the like the process, content versus process. Like, that's a communication thing of when we're locked in the content, which we typically are during in RSD trigger. That means we're locked in like, the thing we're talking about. Process is kind of like bird's eye view, like what is actually happening here relationally? You can get unhooked from the content enough to have some process conversation, some process reflection, that is so helpful in relationships. PATRICK CASALE: Absolutely, 100%. And I think that's also a good transition point into professional relationships. Like, because those things happen in the workplace, too. And it can happen with your co-workers, it can happen from a employee/employer standpoint, and the implications can be pretty huge, like you said, not trying to go for that promotion that you wanted, not talking out in staff meetings because you're going to feel rejected for how you come across. There are so many ways that this can show up in the workplace, too. MEGAN NEFF: Absolutely, absolutely. And I think it's going to depend like, so I talked about, well, Dotson talks about three ways people can respond to RSD, I've added a fourth one. And I have like a little matrix up of like the different ways people can typically respond to RSD. So, workplace stress is going to depend on like, what is your kind of default response? So, like, perfectionism is a really common response to RSD. Like, if I just never make a mistake, then I'm fine. No one's ever going to perceive any of this, right? It's totally illogical, except it's not because we're going to make mistakes. People pleasing, so kind of, like, I put that in under the fawn mode. Like, perpetual people pleasing, like reading, like, what does this person want from me? And a lot of people that are RSD become really good at like, kind of taking in a person, figuring out exactly who they want the person to be. I think that ties back into masking and other things. And then avoidance. So, just like, I'm going to avoid putting myself out there. I think that's the one we've talked about the most in this episode. And then the one I added is the like projector or someone who gets like fight mode when they're perceiving rejection. So, yeah, workplace, if you're a perfectionist people pleaser, with RSD in the workplace, you're going to burn out really fast. PATRICK CASALE: Yeah, yeah. It's going to look like workaholism, right? And you're going to be potentially putting in extra hours that are unnecessary, you're going to be taking on additional tasks that you don't really have the capacity for or don't want to do. And you're going to be one of those employees potentially that goes above and beyond for everything. And then ultimately, it's like, fuck, I can't do this job anymore. This is not manageable for me. This is not sustainable. MEGAN NEFF: Yeah, yeah. And like I think you and I were probably both in that category. And I think that then resentment can come in. So, I would say it's like a more low-simmer chronic RSD response, right? Because there's this illusion of I can, yeah, evade rejection if I just work harder. But then the resentment that builds up, the burnout that that builds up. Absolutely, yeah. PATRICK CASALE: Yeah, absolutely. And then it leads to either termination or leads to quitting a job that you may have been able to navigate or find some accommodation for and it can be really challenging. I think that if we're looking at the whole person, this is so impactful interpersonally, in relationships, in employment places, employment places, places of employment, [INDISCERNIBLE 00:39:39] but it's so impactful. So, knowing the triggers, like you said, implementing some of these soothing strategies for your nervous system, being able to have these conversations, being able to externalize. I think there are a lot of good strategies that you're naming and mentioning right now. MEGAN NEFF: Yeah, yeah. And then also for the avoiders, right? Like getting out of the avoidance loop, which essentially, a lot of anxiety-based treatments are all about targeting avoidance because avoidance feeds anxiety. So, I would add that tool for the avoiders, and especially, with the workplace. Like, avoiders are probably going to be underemployed, they're not going to be going up for that promotion, they're not going to be putting themselves out there. And so really targeting avoidance, using exposure. Gosh, it's going to be a whole other episode. Actually, I feel some guilt about this because I think I used to be one of the voices that said this, and I'm now seeing it on social media a lot. Like, exposure therapy doesn't work for autistic people. Exposure therapy doesn't work for sensory habituation. But that doesn't mean it doesn't work for PTSD triggers, for anxiety. So, we have to get out of this, I think it's a dangerous mindset to say exposure therapy doesn't work for autistic people. When you're in an anxious-driven avoidance loop, you absolutely have to do exposure. Like, it can be natural, it should be led by you. So, for that person exposure and addressing the anxiety would be a really important part of the toolkit. PATRICK CASALE: Glad you name that. I think that's a really good tip and also good framework for the recognition that in some instances certain techniques and strategies are useful, like we said before, despite not being useful as like a blanket statement or across the board. MEGAN NEFF: Yeah, I'm starting to become more gentle in my language use. Like, I think I used to be like, "This kind of therapy is bad." Like, I used to say, like, "CBT is bad for autistic people." I'm now more around like things need to be adapted, right? So, you need to adapt exposure therapy when you do it for an autistic person, 1,000%. If you're using CBT, you should adapt it and consider the marginalized experiences. So, I'm kind of like, yeah, I'm changing my narrative a little bit and how I talk about it. I'm softening it to talk more about adapting and less about what's good and what's bad. PATRICK CASALE: I think it's also important to like, differentiate between taking one simple tool, or technique, or strategy from something, opposed to saying like, okay, CBT as a whole, we don't like it. But this one technique really is useful if we adapt it in a neurodivergent affirmative way. And I think that you could do that with a lot of different therapeutic interventions and modalities. MEGAN NEFF: Absolutely, absolutely. Yeah, yeah, yeah. PATRICK CASALE: Usually, three yeahs in a row from you is like, all right, let's transition out. So, is that where we're at? MEGAN NEFF: I mean, I don't know how long we've been recording. You're right. Like, you said this before we started recording because we were both feeling really lousy. And I was like, "I don't know if this will be a good episode." You were like, "Usually when we start talking it like works." I feel like I could talk longer. But I also feel like I could be done. I don't know, what do you feel? PATRICK CASALE: I feel the same way. I think we've been recording now for about 45 minutes so- MEGAN NEFF: Okay, good length. PATRICK CASALE: Good length of time. And I think it's a good foundational episode to then build off of for different perspectives. I think we can also have people on here to talk about their own RSD experiences, and how it shows up, and how they work through it, or try to manage, and support themselves. So, I think we can go a lot of directions with this. MEGAN NEFF: Yeah. And I mean, I love, we should definitely do a like answer questions follow up because I think people have a lot of questions around this topic. And so we could do that. PATRICK CASALE: Yeah, will say I didn't think about even asking for questions for the episode until like 10 minutes before we started recording. We got like six questions immediately. So, I think that with another day or two, we could compile all that and we can address that the next time we record. MEGAN NEFF: Let's do that. PATRICK CASALE: Cool. Well, for those of you who don't know, Megan, and I haven't recorded in like three and a half weeks because I've been gone and I just appreciate being able to fall back into this even though we feel crappy, like connected in that way. So, just want to thank you for that. What was I going to say? MEGAN NEFF: I think episodes are out every Friday on all major platforms, Spotify, Apple… PATRICK CASALE: What Megan just said, new episodes are out every single Friday. If you have topic requests, if you have questions you want answered, please email our Gmail address that's attached to our Instagram, which is divergentconversationspodcast@gmail.com. We do read those. We don't always respond because we just don't always have the capacity or the spoons to do so. And new episodes are out every single Friday on all major platforms and YouTube. And Megan has a 170-page workbook on RSD that you can purchase from her website at neurodivergentinsights.com. And that will be linked in the show notes as well. Cool. All right, goodbye.
Would you describe the way you feel as you walk through the world as having raw, exposed nerve endings? Or would you say that you just flow through the world able to smoothly transition throughout to day to handle whatever comes your way? In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, talk with Jennifer Agee, a neurotypical mental health professional, about her experience moving through the world as a neurotypical in comparison to the experiences of autistic individuals. Top 3 reasons to listen to the entire episode: Understand some of the ways allistic neurotypicals might experience small talk, context cues, and pivot in social situations. Identify the ways in which neurodiverse couples communicate and adjust for sensory needs so that both partners can have their needs fulfilled. Hear some personal stories from Patrick, Dr. Neff, and Jennifer about how they experience travel, dating, marriage, and daily life in different ways. We want to give this disclaimer that this episode only highlights the experience of one neurotypical person, but it still gives a glimpse into the unique ways that various neurotypes experience the world. More about Jennifer Agee: Jennifer is a Licensed Mental Health Therapist, Professional Entrepreneurial Retreat Host and Coach, host of the "Sh*t You Wish You Learned in Grad School" podcast, an internationally known speaker, and owner of Counseling Community, Inc. and Counseling Community KC. Jennifer stepped away from seeing clients in January 2023 and is now focused full time on clinical supervision, strategic business coaching, leading retreats and continuing education. Jennifer is a mental health regional spokesperson for a national healthcare company and pursues entrepreneurial opportunities utilizing her educational and therapeutic training to benefit the community in non "butt in seat" ways. She has a passion for helping therapists not only become excellent clinicians but solid practice owners. Jennifer's Website: https://counselingcommunity.com Jennifer's Facebook: https://www.facebook.com/groups/destination.ce.retreats Jennifer's Instagram: https://www.instagram.com/counselingcommunity Transcript PATRICK CASALE: Hey everyone, you are listening to another episode of the Divergent Conversations Podcast. And today we are continuing on our series of our neurotype interviews. And I'm really excited to have Jennifer Agee here today who's an LCPC in Kansas City, and a business coach, and my business partner in retreat planning, and a podcast host, and all the things, owns a group practice out in Kansas City as well. And today's part of the series is going to be neurotype Ask An Allistic, specifically, a neurotypical. And Jennifer and I just spent 30 days traveling together in Europe. And we're going to talk about how that experience was vastly different for both of us. But Megan wanted to have you kind of set the tone per usual and just kind of define terms, and then we can get into it. And Jennifer, thanks for coming on. JENNIFER AGEE: Thanks for having me. MEGAN NEFF: Yeah, so there can be some confusion sometimes around neurotypical allistic all these terms. So, allistic is just a non-autistic person. So, last week when we had Dr. Donna Henderson on she was allistic because she's non-autistic. And then a neurotypical would be someone who doesn't identify with any form of neurodivergence. So, now we have Jennifer here, who is both allistic and more specifically, a neurotypical allistic. PATRICK CASALE: Jennifer, what's the first thing we said to you when we got into this room about [CROSSTALK 00:01:31]- JENNIFER AGEE: I don't remember what you said, but I said, "I don't know what is going to happen today but I'm here for it." And you both laughed. MEGAN NEFF: That is just so, like, I would never say that. Or I would never feel that. I wouldn't be say it if I was masking. I would never feel that. And I love that, that it's… So, like, you didn't totally know what was going to happen today but you're just cool, go on with the flow. JENNIFER AGEE: Absolutely. And Patrick knows me well enough, especially, even in traveling with me that that's really me all the time. I really do feel that way. If something happens, I'll pivot, no big deal. If a room's uncomfortable, I can be a little uncomfortable. And one of the things that was super apparent to me when we were traveling together is that we really do walk through the world in wildly different ways of how we experience it. And towards the end, I said, "I just feel like you walk through the world as a raw, exposed nerve ending. And for me, I'm just flowing through the world. And it's very apparent in spending this time together that that's what's happening." MEGAN NEFF: I love that imagery of flowing through the world and Patrick actually brought that into a podcast, which is really interesting because I've used a similar metaphor to describe both my daughter and myself. Like, our nervous system being outside our bodies and the idea of flowing through the world. Gosh, I'm experiencing a little bit of envy right now, that sounds really nice. PATRICK CASALE: I'm going to give you a real-life example of this because it just happened like an hour ago. I was talking to Jennifer. We have a retreat coming up in Portugal in October. And I said, "I'm really concerned that the retreat host is like, not very communicative, he takes about 10 days to respond. My mind goes to like, what are we going to do if this person just keeps our money? We have to refund 30 people." And she's like, "No, we'll just pivot and figure it out." And I'm like… MEGAN NEFF: Whoa. JENNIFER AGEE: And we would, and we would. And here's a part of why, actually, this combination of the way Patrick's brain works and my brain works is a good combination, where I say, "Yeah, we'll just figure it out. Like, we'll pivot, we'll make it awesome. It'll kick ass, it'll be great." And I know that his anxiety is going to be so freaking sky high around it that he will have contacted every person he knows in Portugal he would have made contact somewhere. Like, we would have pulled it out of our butt if we had to, but it's going to be great, it's going to be great. PATRICK CASALE: This is a good example, Megan, of like, what every day together in Europe was like for 30 days where I was, like, struggling so much and I'd be like, "Okay, this is how I'm experiencing today." And Jen would be like, "Oh, I have like, opened my window. And it felt like I was in a Disney movie. And I was really excited to be here. And I slept really well. And I talked to nine people across the street about, you know, various things." And I'm like, "What the hell is happening here? This is so strange." It was a very good glimpse, though. JENNIFER AGEE: It was. I think both of us had a good glimpse into the real way that our behind-the-scenes work in traveling together, for sure. MEGAN NEFF: So, I keep thinking, like, my brain keeps going back to the Big Five. I don't know if either of you are familiar with the Big Five sometimes called the OCEAN. It's actually my favorite tool for understanding personality because it's non-pathologizing. But as I'm sitting here listening to you talk I'm like, kind of seeing your Big Five in my mind. Like, I imagine you'd be very high in openness and very high in extraversion. Have you taken the Big Five? Like, do you know…? JENNIFER AGEE: I haven't taken that assessment, but I am very high in openness and I am very high in extraversion, for sure. MEGAN NEFF: Yeah, yeah. Because I'm also like, yes, you're allistic and neurotypical, but I'm also picking up some strong personality traits that would also factor into this. I'm just realizing how complex this conversation is because we're not just talking about neurotype, we're also talking about personality traits. PATRICK CASALE: Yeah, there's a lot of nuance, for sure. And I think that it's interesting to see how people move through the world. So, you know, the reason we want to highlight this experience, and I also did not do the disclaimer that we did last week, we just want to just use that disclaimer right now, that again, Megan, and I know that interviewing one person does not speak for an entire population of people. So, disclaimer now entered into the conversation. Megan, specific questions, like, that come up for me when I'm thinking about spending time with neurotypical people, my first immediate thought is always small talk. Like, that's where my mind goes of, like, our absolute, like, visceral physiological reaction to small talk. And then, very often neurotypical conversation, which a lot of small talk is kind of the foundation. So, what are your thoughts around that, Megan? MEGAN NEFF: Oh, me? Wait. PATRICK CASALE: Yeah, so I want you to just like expand upon that if you want to. This is where we can explain things like- MEGAN NEFF: Well, I, okay. PATRICK CASALE: …we never knew when to talk over each other, so… MEGAN NEFF: This is always that whenever we have a three-person conversation, this is always like fighting the flow. So, I found this study once. I can't refind it, which bugs me because I really would love the citation. But something about where neurotypical people, allistic people get dopamine from small talk, which gave me so much more compassion because for me it's a very stressful experience, I shut down, I low-key dissociate to get through it. Like, no dopamine. So, yeah, I would be curious to hear a little bit more Jennifer about your experience on small talk? Like, is it pleasurable to you? Like, what is your experience around small talk? Does it depend on who you're doing small talk with or what the topic is? What in your mind is the purpose of small talk? Like, I kind of get it, but like, why do you all do this thing? JENNIFER AGEE: So, for me, it could be positive, negative, or neutral, right? And the way I view small talk, let me make a disclaimer, I understand that as an extrovert I kind of want to get to know everyone and at my base route I do like most people. Genuinely, I think human beings are fascinating, I love spending time with them, all that things. So, I've just got to say that and that might just be my personality. But I kind of look at small talk like going to a cocktail party, and you have like cheese trays out and things, and they have cheeses out that you've never seen before. I know how they cut them into those cute little cubes, right? So, you can have just one and you can see like, do I like that one? If so, I'm going to go back and like load the plate? Or do I not necessarily like that one? And for me, small talk is kind of like those little bits to see do I want more of you or less of you? Are you my people? Are you not my people? Do I want to make a business connection here? Do I feel like you could end up being a friend that I have coffee with? Are you someone that I want to hang out with? Are you someone who… You know, those kinds of things. So, that for me is really a part of the purpose, is I am sampling off the cheese tray so to speak, to see what you're about, who you are, how you present in the world, are you my people or not my people? And it doesn't cost my system if you're not my person or it's not an interesting conversation. And I think maybe that's a part of where the difference is. So, for me, if I'm in a conversation that's not all that interesting, I've actually seen Patrick do the, where you could see this look on his eyes where he gets that, "I got to GTFO." You know? Like, he's looking for the exit. Whereas I could just like, enjoy whatever part of the conversation, find an excuse to leave, and like just get out of it, and it's fine. But I like sampling the cheese tray to always kind of get to know people. MEGAN NEFF: I'm having, first of all, I love the cheese plate butter metaphor so much, but I just had an aha moment. You said, you know, if it's not cheese for me, I can get out of the conversation. That reminds me of that fluid idea. For me, it would be very stressful how do I get out of this conversation? How do I do it without offending them? There'd be an awkward like, "Okay, well I got to go, bye." So, the getting out part is harder for me. And I wonder if that's part of why small talk is not as stressful as you can fluidly enter and leave small talk without it being like this big, "Okay, how do I get into it? How do I get out of it? When do I know when the other person wants out? When do I want out?" JENNIFER AGEE: I think you're right. PATRICK CASALE: I also heard like the compartmentalization ability to say like, is this someone I want to have a business relationship with? Is this someone who falls into the coffee category that could become a friend? In my mind, like, there is no ability to have that interpretation and analyzation in the moment where I'm literally, exactly like Megan said, I'm analyzing everything around me, and picking up on everything around me, and trying to figure out the least stressful way to get out of it. And honestly, it does look like this look, that Jen is describing where I'm like, "I have to get out of here." And I may not do this in a non-abrasive way. Not that that is my intention, but it certainly feels like this thing that has to immediately happen. And that it becomes almost torturous to exist in the conversation the longer it goes on. And I don't have a good filter for like my face. My wife will often say, like, "Patrick, fix your face because it's very obvious." JENNIFER AGEE: So, what's going through your minds when you're having to engage in small talk? Because you're both business professionals like I am. Like, we're in these spaces where it's kind of expected. So, I kind of shared what's going on in my mind as that's happening. How do you guys see it? Like, what's that like for you? MEGAN NEFF: That's a great question. I have kind of curated a life where I actually don't do much small talk. I've created a little island of work. And I've actually thought about that of like, it's kind of weird I don't collaborate with more people. Patrick's probably the, yeah, you're like the only… well, I've got one other person that I do some collaboration with and they're both neurodivergent. Okay, but that's not your question. So, I'm trying to think about the last time I did small talk. It's typically, like, I am thinking about my face, I am thinking about, like, nodding, I am thinking about, what is the point of this conversation? I'm maybe, like, rehearsing ahead of time what my next question will be, so I'm like listening for something to grab on to that they're saying that will like move the conversation forward so there's not an awkward pause. I'm typically not thinking about building connections because for me, if I was like, "Oh, this would be a good coffee person or a good business partner." As soon as I think that it becomes a demand and I want no more demands in my life. So, there's a scale on one of the, like, autism screeners, and it's social motivation. My scale is very elevated. Meaning I have very, very low social motivation. So, there's also like, unless I'm having a really automatic connection, like Patrick and I did when I was on his podcast, I'm not thinking about forwarding the connection. I'm thinking about how to exit. PATRICK CASALE: Yeah, and I think that's where these abrupt conversation disruptions come in sometimes. I also think I do a really good job of, like, camouflaging/chameleoning, that's not a word. Acting like a chameleon. MEGAN NEFF: Listen to Megan Anna, you just turned something into a verb. I like it. PATRICK CASALE: Claustrophobic is going to be the one because I still have people asking me about that. JENNIFER AGEE: You made me Google that word. MEGAN NEFF: I read a lot of people, that's going to be like a trend in Google because I made a lot of people Google that word. PATRICK CASALE: I do a good job of picking up on what people are interested in and being able to create conversation off of it, so I can remember being at a job where someone was wearing like a Duke basketball sweatshirt. And I did not like spending time around this person. But I knew that I needed to create conversation with them because of the sake of the workplace. So, my immediate conversation drifted into like, "Oh, Duke, like, how long have you liked them? Like, what's really interesting to you about them?" Because it allowed to create conversation that was not like, "How's your day going? What's the day look like? How's the weather outside?" Like, "Oh, man, how was your sleep?" Like, questions that I don't care about to answer. Like, yes or no questions in, general. And so, I've always been good at that but it comes with a cost. And the thing that I think small talk does for me is, Megan, you made a great point of like rehearsing already, and like anticipating your answers. And that takes a lot of mental energy to then have to sit there, and analyze, and think about what am I going to say? How am I going to respond? And then often when masking in situations that, like, say I go out with my wife's friend who I don't know I'm going to feel more uncomfortable despite being with my wife and I'm probably going to mask more because I'm going to be like head nodding more, and making more eye contact, and trying to stay engaged in the conversation. And if the conversation is of no interest to me, and I know that we're not going to become like, friends or contacts, I want it over with. And sometimes in those scenarios, you can't get out of them. Like, I have to sit and endure in that situation. And I think, Megan, and I want you to speak to this too, and your perspective, but I very quickly and intuitively pick up on who I'm going to connect with and who I'm not going to connect with. And if I'm not going to connect, I have no interest in continuing. MEGAN NEFF: Yeah, yeah. And that's why, like, I pick up energy so fast. Oh, I want to ask you about that next Jen, first, like picking up energy, that like within, yeah, probably five seconds I know if I'm going to connect with someone. And it's an energetic, like, either it's there, it's not there. And I feel like I can also register how authentic is this person and if they're not authentic, I feel so psychologically unsafe in their interaction and like, I get disoriented because I can tell there's an incongruency there. Like, I have a really strong reaction to that. But I did just want to piggyback off something you said, Patrick. I totally did that, too. I forgot it. But when I was in hospitals, until I could find like a shared context to connect with someone I didn't know how to enter the conversation. So, I was always doing that too of like, did we go the same universities? I remember, like the doctors I connected with best were ones that like we had gone to the same university, like out East. And once I could find a shared context, I could enter conversation. But outside of that, I'd feel so disoriented, not knowing how to enter the conversation. So, that was just interesting. Yes, Jennifer, picking up other people's energy, is that something you experience? JENNIFER AGEE: Absolutely. But again, I don't think it costs my system if they're not my people, I just re-categorize them in my brain and continue on in the conversation with them in that new category. So, [CROSSTALK 00:17:09]- MEGAN NEFF: This information. JENNIFER AGEE: It's information for me to then I'm making decisions as to what level of investment I'm going to have. I will say, though, a part of my personality, and I don't think this is necessarily neurotypical, but I do think it's more part of my personality, I am way more likely to give people more chances, I'm way more likely to see 1000 different areas of gray as to how someone might have arrived at a conclusion or made a statement, or things like that. And so I know that even in Patrick and I's interaction because he does pick up on patterns and things that I don't pick up on as quickly, I'm more likely to maybe stick in something a little bit longer than he would because his system has already very immediately made a decision whereas mine might have made an initial decision and then I test the theory. But yeah, I definitely pick up on people's energies in the room but then I just re-categorize them and move on. MEGAN NEFF: So, when you talk about picking up energy and then re-categorizing like, is it like infecting you? Like, does it become your energy? Or is it a like a signal. Like, okay, that person has a high tempo, that person has a low tempo. JENNIFER AGEE: I think that has changed as I've gotten older, and I know myself better because I am very intentional about protecting my energy in a way that I didn't know to be when I was younger. And I think that's true with most of us, as we know each other better, you know how to show up in spaces. But I can think of a specific example with another leader in our community who always talked about our friendship. And I did think there was a base of friendship there. I didn't think we were friend friends, but we were kind of like on that road to friendship, for sure. I met them and spent time with them in person. And within the first three minutes, it was very clear I was a business transaction to this person, I was not an actual friend to this person. I felt it immediately, I saw the non-verbals, whatever. And so, although, I felt just some level of disappointment because I thought it was really going to be one thing, my brain immediately re-categorized this person as this is a transactional relationship. So, anything that they did moving forward, I always just saw it in a lens of we're both getting something out of this, not that it's friendship, but we're both finding ways to use each other's skill set to benefit our businesses in some way. And so I didn't harbor as much ill will or resentment whereas I know other people I've had interactions similar and have walked away with a very different experience. MEGAN NEFF: Yeah, that. Because I think, for me, like I'd feel like kind of clickbait like, but with a person and I'd feel, betrayal is too strong of a word, but like, I really have a sensitivity to feeling manipulated because I'd way rather someone be like, "Hey, I'm interested in a business collaboration, let's go." But if someone is like, manipulating to get to that, like, yet, for me, that would be a pretty quick cutoff. Whereas I hear the psychological flexibility in your mind, you're like, "Nope, I'll put them in a different bucket, move forward, fluid. We'll move through the world fluidly." JENNIFER AGEE: Mm-hmm (affirmative). And if that person was not able to benefit my business in some way, transactionally, I would have then just kind of completely put them to the side. And I wouldn't have had a problem with that. But yeah, there is that flexibility where, again, I think this goes to I do flow fairly easily in the world and in my relationships. MEGAN NEFF: Yeah, yeah. I'm going to backtrack something I just said. Actually, I don't know that I would cut them off. I would explicitly ask them, I would say, "Okay, I'm confused. It seemed like you were pursuing a friendship, but now it seems like this is what you're pursuing. What are we doing here?" And actually, now I just don't really respond to people in my DMs but when people used to… Is slide into my DMs always a sexual connotation? I don't know what I mean. PATRICK CASALE: I think it's the right connotation, yeah. MEGAN NEFF: Yeah. People would slide into my DMs. My kids are going to, like, hate me, they always make fun of me when I try to use like Gen Z language. And want to set up a meeting, I would explicitly ask, like, "What is your intention here?" And I'll still do that. I'll be like, when people want to meet, I'll be like, "Give me a bullet list of your intentions, and then I might consider giving you my time." PATRICK CASALE: That makes sense, though, in a lot of ways. And like, whether I do think that is certainly much more of a neurodivergent trait, but it makes sense when you get bigger and busier. Bigger, like you're a medium-sized influencer at this point in time. You have over 100,000 followers on a social media channel. Like, you have to be intentional about how you kind of structure your responses. But I agree with you Megan, like, I want to know the intentionality immediately, and what I'm getting a lot of, and I fucking hate it. Sorry, for cursing world, I'm doing better, is someone will like DM me- MEGAN NEFF: You don't need to mask here, remember. PATRICK CASALE: Someone will DM me and then they'll say like, they'll immediately send a compliment out, but then immediately follow up with an ask. So, in my mind that feels very inauthentic, that feels very disingenuous, that feels like you're just sending this compliment out so then you can ask your request. I don't respond to those anymore. And I used to respond to all of them. And I just realized, like, I can't. I don't have the energy or capacity. But I like- MEGAN NEFF: I'm happy for that progress, Patrick. I'm so pleased. PATRICK CASALE: I know. Jen makes fun of me because she's like, "Patrick picks up every phone call that comes to his life." [CROSSTALK 00:22:41]- JENNIFER AGEE: Every, every phone call. PATRICK CASALE: … if I was in jail because I you know you wouldn't pickup. JENNIFER AGEE: Yes, absolutely. PATRICK CASALE: I don't do that anymore, though. JENNIFER AGEE: I don't think you'd send me bail money too. So, you'd definitely be on my call list. PATRICK CASALE: I screen more calls than I was screening. But like, I like what you're saying, Megan, about, like, give me exactly what you're asking from me because I think that's really important for us, in terms of, like, no longer masking and no longer trying to always have neurotypical relationships. So, like, just ask me for what you're asking without like all the additional layers and all the additional like fluff that comes with some of the conversation and then I can make a much more informed decision energy-wise and also like intentionality-wise, I think that's important. And something you said before that stood out to me, Megan, is like, the ability intuitively to pick up on energy that feels incongruent, or out of alignment, or I can pick up on artificiality like that. And as soon as I pick up on it, I'm not having this relationship, it's going to get cut off. And I think that's a big difference in what you're saying, Jen, is, like, the ability to flow through the world and categorize in the moment. My ability is like, black white. Like you're either going into the pile of people that I don't care about, or I'm going to really, really like you, and I'm going to really like show up for you. So, there is no middle ground for me in terms of socializing. JENNIFER AGEE: That's actually one of the things I love the most because, like, I'm the only neurotypical in my family, right? And so one of the things- MEGAN NEFF: Yeah, I was going to ask you, like, if you had any connections to neurodivergents. So, you're the only neurotypical in your family. JENNIFER AGEE: Correct, yeah. And I- MEGAN NEFF: Wow, so, like, you're parents to neurodivergent kids? JENNIFER AGEE: Yeah, my husband, my two children, two of my grandchildren have already have diagnoses. And so one of the things, I guess, I totally lost my thought, but- MEGAN NEFF: I'm sorry, I interrupted your flow. JENNIFER AGEE: You're totally fine. Yeah, I do just flow differently in the world. And I think being in a household, oh, I got it back. Okay, so I'm reining it in. Okay, here we go. So, what I love about the neurodivergents in my life is exactly what Patrick said. If I am someone that they love they like really love me, I am super in, they invest in me time, energy, and mutually we do that. Whereas with neurotypical, I think, because we're more used to flowing in and out of each other's lives based on all sorts of different things, including seasons, everyone in my life who is a neurotypical who I'm genuinely friends with, they're a real friend. And I see that not as a privilege because I'm not inflicting anybody's head, especially, one on this podcast. But I do think that I honor that I know that I'm in a space that not everyone gets to go to in their life. Whereas a lot of people get that space with me, they're not in my inner circle, but a lot of people get access to me in a different way. PATRICK CASALE: That's a really important point. I think Jen pointed that out to me, Megan, like, while we were traveling, I was thinking about, like, how many people want access to me, and she made a good point, she was like, "Because you don't give them access. Like, you shut them out, so people want to have more closeness and connection." And in the business world, that's a really strange feeling because it means that people are going to like, try to manipulate you sometimes to have more contact with you. And that's something that I really, really struggle with, as someone who has to be around a lot of people a lot of the time for the work that I do. MEGAN NEFF: I'm having kind of a realization as well, as we're talking, Patrick, of like, you and I are both in positions because of our like platforms and business where people want access to us. So, we have the privilege of being like, give me a bullet list of what you want to talk about. Right, there's a lot of autistic people who are experienced in inverse. Like, I'm very aware of my social motivation is so elevated to where like, I don't want more people in my life. But there's plenty of people who are having the opposite experience of like, I'm really trying to build community and I can't give people a bullet list of what do you want to talk about because it's not like I've got 100 people sliding into my DMs. PATRICK CASALE: For sure. That's a good point. I mean, what do we hear a lot of from, specifically, our autistic listeners and followers is like, loneliness, right? Well, are you trying to revamp the camera? MEGAN NEFF: Yeah, right. Yeah. PATRICK CASALE: I bought Megan the camera that I have and it tracks your motion, so it's not always in alignment. MEGAN NEFF: Oh, my God. PATRICK CASALE: But what we hear a lot of is like loneliness, and disconnection, and the desire to have community, and where can I get more community, in general? So, it's really hard then to say no to requests, say no to demands, have boundaries with energy, and time, and sensory overwhelm because there's such a desire for connection. And I think that is a really good point, Megan, that it definitely is a privilege to be able to say, like, not going to respond to this, or I don't feel like paying attention to the messages, or the emails, or whatever. MEGAN NEFF: That I'm going to put boundaries around how I'm going to engage with you, yeah, yeah. PATRICK CASALE: Yeah. Like your email response is pretty perfect about that. Your automatic response that you have built-in. MEGAN NEFF: Oh, right, you've seen that now. Yeah, see? Building boundaries. PATRICK CASALE: Building boundaries. That's right. Yeah, really, really good point. How about we diverge to another set of questions? So, last week, when Donna was on, we were asking about context, Megan, and like context clues. And what was the example you gave, in terms of context clues? Something about a neighbor conversation? I can't- MEGAN NEFF: Yeah. So, it's, like if someone asks what's your favorite book? And Donna was saying how it would depend who was asking. Like, for me, I'd be like, sifting through trying to figure out like, it'd be so hard because, like, what does the person mean my favorite book, what genre? So, first of all, I just like, can't answer that questions to context-dependent. But what Donna said, which just kind of blew my mind was like, well, if my neighbor asked, I would say this book, if a colleague asked, I would say this book because I know that like, that's kind of what they're asking. And then what Dr. Henderson was saying is how those context cues are all interpreted subcortically. So, like, outside of our, you know, prefrontal cortex, all of the labor that goes into that. I feel like I heard some of that when you were talking about small talk as well. Like, how quickly you're picking things up and then putting them into buckets, if this is a business connection, this is a friendship connection. MEGAN NEFF: I think you're absolutely right. And I'd do the exact same thing. If somebody asked me what book are you reading? It depends on who they are, and what context I'm seeing them, and I immediately know which category I need to go to and which ones I definitely don't tell them that I'm also reading either. PATRICK CASALE: I've heard too much of those. MEGAN NEFF: Oh, so you also know, like, what filter to apply? JENNIFER AGEE: Yes. MEGAN NEFF: Oh, wow. And again, it's this is not like an analytical process, it's intuitive to you. JENNIFER AGEE: It's very intuitive. I don't think about it. And again, this goes back to things that I noticed spending this much time with Patrick is, I see that he has to think about it, I see that he is intentionally filtering things that I am not intentionally having to filter. MEGAN NEFF: Sounds so nice. PATRICK CASALE: I just got like weirdly emotional on that. I don't know why. But, yeah, I think it's exhausting. Megan and I have talked about how exhausting it is to have to constantly like, try and prune information, and categorize it, and place it where it needs to go. And that's probably why like, sorry, that's probably why like, a lot of the times I have this look on my face where I'm like, maybe feels vacant or blank, but it's really just like, really inside my head trying to figure out the scenario, or how to categorize, or compartmentalize, or answer specific questions. So, it's really interesting. Like, I really wish that it would be completely intuitive, or it was just like, "Oh, I know exactly how to respond to this without having to think about how I'm going to respond to this." Sounds nice. JENNIFER AGEE: I don't know any other way. So, you know, our brains are our brains and they just work the way they work, I suppose. But you know, another part of this conversation, and if you don't want to go into this category, we don't have to, but because Patrick is my friend, I have talked to him before about sometimes the different costs to our system just in relationship like with partners and closer friendships and relationships. And in part because I know that it's harder on my spouse's system to do some of the things than it is mine. I find that I very often will default to the highest sensory needs person in the room. So, because I know it will not cost my system as much no matter what we do, really. If I know that if we choose X restaurant, that it's really noisy, or it's this, or it's that, and it's going to probably be uncomfortable for them even though I might really want to go there I won't even bring it up. Like, I make a thousand tiny internal pivots to try to make space comfortable for the people that I love and care about. MEGAN NEFF: Yeah, yeah. First of all, I love that. When I work with parents who aren't neurodivergent themselves, that's something I'm often like, encouraging like, because they'll be like, "Why does my kid not want to go to the restaurant with us?" It's like, "Whoa, let's think about their through sensory lens." So, first of all, I just love that you are doing that, that you're thinking through what I would call a sensory lens. But to the other thing that's interesting that I think I hear your analytical brain, right? Like, for me, that's intuitive. Oh, I don't want to go that restaurant. And this is that double empathy problem, you have to analytically think through, okay, is that a high sensory restaurant? What is my spouse's experience going to be about that? And I think that is at the heart of the double empathy, which is, when we're in a cross-neurotype interaction, we're just not going to intuitively understand the other. But you're doing the labor, you're doing the prefrontal cortex labor of thinking through what would this experience be like for the other person? JENNIFER AGEE: Yeah. And full disclosure, I've been with my husband for 30 years. So, I can tell the way his eye slightly moves a lot of times, you know, how that's affecting his system whether he says it or not, you know? And I think proximity is helpful, right? The longer you're with someone, the more you know how to pick up on their non-verbals and can adapt. And I think we all do that for people we love, right? So, I'm sure you both have put yourself in situations that you don't necessarily really want to be in. But you know that your partner would really enjoy it, or it's important to them, or, you know, going out to a Happy Hour with coworkers you don't know or whatever. Like, that's not how you want to spend that day but you love your partner and you make accommodations for it. And I think you know that we just do that. But I have noticed that I'm more aware of the fact that I'm doing it and I think it's because I'm getting older and I'm asking myself the questions like, how much am I doing that? Or how much am I doing that is accommodating other people? Kinds of questions, but I've been more aware of it. And, you know, I've kind of come to the conclusion that I really don't mind like, because I've asked like, do I feel resentful about that? Should this tick me off? You know, and when I thought about it, it doesn't because when my partner is happy and is flowing through the world in a better way, that helps me in our home and in our life low better, too. MEGAN NEFF: Yeah, right. Like, you're going to get a more present version of your husband at a lower sensory restaurant, so if your thinking about the quality of the dinner, it's like, okay, I could go here and maybe get the food I want, but I'd have a dissociated husband or depending on if he goes up or down. So, I love how you think through like the nuance of that. And I think this is so important for neurodiverse couples, is a love Esther Perel's work in general with couples. But one thing she talks a lot about with couples work is like the importance of not always looking to our partners to get our needs met. And I think, especially, for the neurotypical spouse, when there's a neurotypical spouse, like, take yourself to the restaurant, go there with a friend. Like, make sure you're getting that need met of like, I love this restaurant and it's a high sensory restaurant. And I think when I see neurodiverse couples get stuck a lot, is they're not giving themselves permission to meet their needs outside of the dyad. And then that resentment builds up. JENNIFER AGEE: Absolutely. PATRICK CASALE: That's a great point. And you know, I'm very thankful that my wife is very intuitive about that, and also analyzes the cost because she knows that if we go somewhere where I'm just very uncomfortable, it's not going to be an enjoyable experience, and it's not my intention. But she also knows, like, there are like six restaurants in town that I will go to consistently. So, if she really wants to have a date night she's like, "Do you want to go to one of these six places?" I'm like, "Yeah, that's fine. Like, that's okay." "Do you want to try this new place that's really loud, or, you know, really crowded, or really busy?" And I'm like, "Not really. No, I don't want to do that." And Megan, you and I have talked about, like family obligations, and familial obligations, and the cost that comes with saying yes sometimes to going, right? Like, my wife's family and my in-laws are big, loud family, and they're wonderful, but it's overwhelming. And the cost that comes with that is something where I will have to kind of give myself months of time to mentally prepare to say, like, "Okay, we're going to go on Christmas Eve, and I'm going to, like, sit in this room for six hours." And like, I know what that means in the long run. And I just think that is an interesting way to put that in perspective, too. MEGAN NEFF: The other thing, and like, I'm feeling the controversy in my chest before I say this. So, I want to give it some context. But you know, after my diagnosis, and, Patrick, we've talked about this on this podcast, like, there were aspects of being autistic I needed to grieve like the limits I have. I think my biggest grief is around my sensory limits because I have such a hard time being present anywhere in the world, outside of nature and my house because I'm shut down, my nervous system shut down. But I've encouraged my spouse, like, you get to grieve this too. And that's tricky for him, that's not intuitive. But like, the other day, a concert came up, and he was like, "You know what, I had a moment of like it'd be nice if, you know, Megan Anna would want to go to something like that with me." And I am encouraging him of like, "You get to grieve that you don't have a spouse who can enjoy concerts with you." So, I think that's a tricky line, but I think it is important, especially, if this is later in life discovery for both partners to process and grieve elements of what it means to be a neurodiverse. And likewise, like, there might be elements where I grieve that my spouse doesn't intuitively get me in the same way that neurodivergent people do. PATRICK CASALE: Yeah. JENNIFER AGEE: I love that you guys are having this conversation. I really do because I just think of how many people that have been in my office over the years, where there's an undercurrent of all of this going on, but in people's politeness are not wanting to hurt their partner's feelings. They don't also own the parts of them that are true that may not feel great to say out loud, and I think healthy relationships gives space for both partners to feel those feelings. MEGAN NEFF: Yeah, yeah. And I think that that's important to any couple but especially, in a neurodiverse couple where we are working on that across neurotype, double empathy issue of like, we have got to create space for there to be complex emotions and for us to hold space for our partners to have complex emotions. PATRICK CASALE: That's definitely an episode in the making. I think just having conversations around neurodiverse couples, and partnerships, and communication styles because that's what comes up a lot is missed attunement, and communication, and interpretation of communication. JENNIFER AGEE: That is going to be a huge episode. You all don't even know, buckle up. It is going to be big. I want to compliment you guys, one of the things I really enjoy about your conversations is that you very clearly and articulate the felt experience of being an autistic person walking through the world, where just like you're asking me questions as, you know, ask the neurotypical day, you know, kind of thing, it gives me a peek behind the curtain too, to what's actually happening in your system. And so I just really appreciate and value what you guys are doing. I want you to know that. MEGAN NEFF: Thank you. I'm going to, like, not to totally deflect but I'm going to deflect. First of all, like those words mean a lot, but I also noticed myself retreating with the compliment coming in. How do you experience compliments as a allistic neurotypical? JENNIFER AGEE: I think, for me, how I experience compliments has changed as I've healed my own childhood crap. So, you know, when I was younger, it was definitely not something that I accepted or received. And now when somebody says something nice, I just say, "Thank you." Or I hear all, you know, a lot of times, "Oh, my word, your life looks freaking amazing. Look at all the things you're doing. You know, I just wish I could, you know, have a life like that." And I'll just say, "Thank you. Yeah, it is pretty amazing." And so I can receive it now. But that was not easier when I was younger. And I think that just had more to do with childhood junk than anything else. MEGAN NEFF: Yeah, yeah. JENNIFER AGEE: But I'll make my husband stay in there and take it sometimes. I'll just be like, I'll warn him, I'll say, "I'm about to say something nice and you just need to take it." That's exactly what I say. MEGAN NEFF: I love that. PATRICK CASALE: Well, and I can see that being true because that's kind of how our relationship goes sometimes. And two, I could see you retreating Megan. Like, I saw your body like do this. MEGAN NEFF: Even though, like, I loved I loved those words and they genuinely mean a lot. I think it's the positive emotion. And again, this is on the big five, there's a whole facet of positive emotion. It's often low for autistic people. But it's both like, how much we generate positive emotion, but also how we experience it coming toward us. And for me, it can mean a lot but positive emotion coming toward me it feels like a sensory demand. I don't know how else to say it, which is that- JENNIFER AGEE: Because of the titter tat, like, of like a give and take. Like, because I'm saying something nice to you now there's an internal expectation something's supposed to come back. MEGAN NEFF: That's part of it. So, part of it is energetic, just like, but then part of it is I'm supposed to have a nice response to this. And I just typically have an awkward response to compliments. So, also, I guess, there's social demand around and now how do I take this in, and then respond to it? And it's also the like, okay, like, teenage era, it brings me back to like middle school and high school. Like, someone complements your shirt, then you compliment their shoes. Like this exchange. Yeah. JENNIFER AGEE: There's a lot of, you're tapping into something that's completely accurate, which is there's a ton of nuance around relationships, which is where, I think, you know, the two of you would just prefer to cut the bowl and get right to the meat and potatoes. I'm from the Midwest as well. So, like, there's a ton of politeness that goes around conversations because coming- MEGAN NEFF: I grew up in the Midwest, yeah. JENNIFER AGEE: So, coming directly at someone with like, "Hey, saw you messaged me, tell me what you want, what you really, really want. And then like, we'll get out of here." MEGAN NEFF: I love So the Spice Girl reference just there, by the way. JENNIFER AGEE: All right, random brain. But anyway, so if someone came at me that way, I'd be like, "Well, okay, then Mr. so and so." You know? MEGAN NEFF: It will put you off. JENNIFER AGEE: But I know enough now to be like, they're just being direct because they need me to cut to the chase but I will tell you that is a more recent development. And you will be on my suspicious list as to whether or not you go in category, transactional. Like, I'm already starting to make categorizations based on that directness now. I will tell you the first time I met Patrick, and I had already hired him to talk at my first retreat, I told my husband I said, "I don't even know if I should go up and say hello to him based on the look on his face." Like, I'm like, "I don't think this dude likes me at all." Anyway, because he's like, "Well, it's the truth. You tell stories about me, I'm going to tell him about you." Anyway. So, just the way, you know, his presentation and all this stuff is, as soon as he was diagnosed, it was like my brain re-categorize every interaction we had, and I was like, "Oh." And I didn't feel some type of way about them anymore because I understood that was just him being genuine in that moment, his face didn't want to make a fake smile face, which my good Midwestern parts were like, "Put a fake ass smile on, I'm here, come on." You know? So, and he didn't want to, and he didn't. But now that I know that I'm like, okay, he was being genuine in that moment, and my brain re-categorized that. MEGAN NEFF: And this is one of the potential benefits of relational self-disclosure is then we have an accurate narrative to, like, encode those interactions. I got this a lot from my life, too. I think, Patrick, you have too, probably, a lot of autistic people. Like, you seem distant, aloof, like hard to get to know, disinterested. Whereas like, I might be the person in the crowd, like, trying to find someone to make talk with so that I don't awkwardly stand in the corner. But most people are reading me and have read me as disinterested. So, I think it's so helpful then when there's this narrative of like, oh, okay, I understand this interaction, I can categorize it differently now. PATRICK CASALE: Yeah, absolutely. That's so spot on. I think those adjectives or description words would be the ones that people would use for me most often. And when I'm connected with people, I'm really connected with them. Like, I can talk, and be very social, and very engaging. But yeah, those would be the words that I think come to the forefront for most people. And I think a diagnosis helps, like you both said, re-categorize, in a way, or at least reshape a perspective, which I think is important, too, if you're open to reframing the perspective, right? Because people can also interpret the diagnosis is like, so what? Like, you're still acting this sort of way. I'm from New York. Like, even if I wasn't autistic, I think there's still a level of directness of being from the Northeast, where like, that is how people communicate. And then moving to the South, were people who are like, "Bless your heart." And like, we got to put all of this fluff into all of the conversations. And I'm like, what is happening here? I don't understand it. So, that's very interesting, you know, in general. But I agree that those are the words that people would describe me with in terms of like, getting to know me socially. And I think that's strange when I am the face of a business where we're hosting people all over the world and if their perception is like, Patrick, is unapproachable, and distant, and really mean, that just doesn't feel great for my brand. But it doesn't seem like that is the case. It just seems like people want to get to know me more because of how distant I present, I guess. I don't know, that's what I'd say. JENNIFER AGEE: I've told you 1000 times it is a part of the key to your success because the, I want to be liked parts of us, freaking love a good aloof person because we're like, "Why don't they like us? Maybe we can…" I mean, like, so all those parts kick in for us, too. I think when we see that we go into all of those spaces within ourselves and yeah, I think it's been a part of your success, to be quite honest. PATRICK CASALE: I appreciate that. MEGAN NEFF: I think it's part of why my spouse married me was because I was like, the aloof in college, right? So, like, that plays really differently. Like, being an autistic girl who was like, hard to get to know, like, in the dating world, that kind of works, actually. JENNIFER AGEE: I could see that. PATRICK CASALE: Can we talk about dating real quick? Because this is something we did not talk about last week and that is something. I just want to check our time too. Do you have your meeting, Megan? MEGAN NEFF: I don't but I don't know if you all have anything. I also have a couple more questions I would really like to- PATRICK CASALE: Okay, cool. We've got like- MEGAN NEFF: …have conversations on- PATRICK CASALE: …20-ish more minutes, so I am [CROSSTALK 00:49:21]- MEGAN NEFF: Are you okay Jennifer for time? JENNIFER AGEE: I'm good. PATRICK CASALE: Last week I didn't have the same buffer, but so dating, right? You just made a good point, Megan. And we've never talked about dating on this podcast as neurodivergent people. I struggle so much to pick up on social cues. I think I'm better at it now. But during that span of my life, it was really hard. And like if people were interested in me, I definitely did not know. So, if someone came over and just talked to me randomly, or like, put their hand on my leg or like, gave me a certain look, I would just not really be able to absorb that or take that in or make sense of that. I definitely had a lot of those interactions where someone was definitely hitting on me and I was probably like, "Oh, did you need, like, direction somewhere? Or like, do you need recommendations for a restaurant?" And I just, like, got up and walked away. My wife is like, "You definitely missed out on a lot of relationships because the first date." I didn't know she wanted to kiss me. I didn't know. She said, I gave her like an awkward side hug, like, goodbye. I probably like ran the hell out of there. I was like, "I got to go." Anyway, Jennifer and Megan, how do you experience that and picking up on social cues? MEGAN NEFF: Jennifer, I'll let you go first. JENNIFER AGEE: I mean, I picked up on it just fine, and then, look, I think if you're cute enough, and you like the person enough, any stupid line will work is kind of my theory. So, I never had a problem with it. And then based on the cues, I would, again, immediately categorize in my mind, do I see this person as a potential anything? And if the answer is no, I would politely you know, hahaha, and exit the conversation. And if I thought they were a potential, I would lean into it. But I was able to tell and really intentionally make a decision if I was going to navigate that interaction one direction or another. PATRICK CASALE: I'm thinking of a situation right now that while I was in Charlotte, before I moved to North Carolina, with some friends, and a friend of their friend, and she kept putting her leg on my legs while we were sitting at a restaurant, and I kept moving and being like, "Oh, my God, you must need space. Like, you clearly don't have enough space in this booth." Anyway, sorry. JENNIFER AGEE: Yeah. You misread that one. PATRICK CASALE: I misread that one. MEGAN NEFF: Definitely. I hear that a lot. Patrick, that's not been my experience, but I hear that a lot from autistic people, especially, more so, I think, cishet men. Like, just totally missing. And, again, talking like in kind of heteronormative spaces, I wonder if many girls are more subtle in their… Because like, we live in this patriarchal culture where it's typically like, the man is supposed to initiate. So, like, yeah, I didn't really relate to that. Also my dating experience happened in this really weird bubble of evangelicalism. And so my dating experience was more like I get into a really deep kind of philosophical, existential conversation with someone, we end up talking late into the night. Like, it would become pretty clear. And it would start with kind of a emotional intellectual connection, typically. So, I do think that I have had like, I think I interpret all banter as flirting, so I do think I have difficulty and in the workplace, this has confused me when I've had male supervisors, banter with me, of it feels flirtatious, but then I'm, like, confused by that. So, I've definitely had that experience actually work. But it's more, everything feels flirtatious versus nothing feels flirtatious. PATRICK CASALE: It's very interesting. I definitely think we have episodes to do off of some of these conversations because it's just interesting to hear these different perspectives and how we interpret and move through the world. So, Megan was there [CROSSTALK 00:53:53]- JENNIFER AGEE: They're so fascinating. MEGAN NEFF: They really are. Jennifer, well, this is a strong pivot. I don't know if we're done. It seemed that fluid, I have to explicitly ask. PATRICK CASALE: This actually feels more fluid than last week. So, pivot away. MEGAN NEFF: Oh, I'm just saying I'm not fluid. So, I'm like having to explicitly ask, are we done with that conversation? Can I- PATRICK CASALE: Can I transition? MEGAN NEFF: Yeah, sensory, we haven't talked about that. So, I know, we've talked about small talk, we've talked about context cues, what's your sensory experience of the world? JENNIFER AGEE: I literally don't think about it. MEGAN NEFF: I was actually guessing that might be what you say, of just like, because it's like a fish in water not experiencing water. That's so interesting. So, like, you'd have to think about it to think about what your sensory experience is. JENNIFER AGEE: Exactly. And now it's 105 degrees. So, if I go outside, I'm going to have a sensory experience of being hot and uncomfortable. I mean, it's just being a human in the world, right? But in general, I don't filter or anticipate anything in terms of thinking about my sensory needs at all because this is kind of, I hope that didn't make me sound bad. But the truth is, I know my systems got it. So, if I walk into a situation, I know that my system will pivot or adjust in whatever way it needs to, to be okay. So, I just really don't think about it. MEGAN NEFF: Yeah, yeah, that doesn't sound bad. That's like literally one of the core differences is something I talk a lot about is how neurodivergent people have like ice thin window of, like, window of tolerance because we can't take in incoming stressors in our body adapt as easily. Same thing with sensory, you're saying your system can take in new input, and adapt, and be okay. And that is like precisely one of the huge differences between allistic and autistic systems. PATRICK CASALE: Yeah, I'm thinking about, like, the one-degree temperature difference that I sometimes need to make me feel more comfortable in my house. And if my wife uses the air fryer, how I can't sleep at night because I can smell the smell of like the air fryer all night, and I'm so uncomfortable, and how I so often default to certain clothing items because of comfort. And it's just amazing how much energy and intention has to go into like sensory soothing, and really having to be really aware and vigilant about it pretty constantly in order to be comfortable. JENNIFER AGEE: So, this is a great example, actually, you mentioning the temperature of how my system, I will just kind of take a lock and just get on with it. So, when we traveled we would often stay in Airbnbs because we packed basically in a backpack for a month, you know? Then we always had to do laundry. He likes it like a freaking icebox. I mean, it was a meat locker in there. I keep my house at 77 degrees. MEGAN NEFF: 77? JENNIFER AGEE: Yeah, and I feel amazing, right? So, at night we'd get in, we'd both kick our shoes off at the door and go to separate rooms. And he would have it set to icebox temperature. And I literally slept with my head under the covers almost every night because I was freaking freezing. But I knew I could wake up and be like, all right, let's go to coffee, you know, it's going to be a good day. And if that affected his sleep, if that affected you know, all of these things, I was thinking of those things, too. I know you made accommodations for me too. But I'm just talking specifically about the being physically comfortable in a space. I was just like, it's not worth it because it's going to cost him sleep, which is going to cost him a lot, lot more the next day. PATRICK CASALE: 77 degrees sounds miserable, first of all. That's what my dad keeps his house at in Florida. I go down there and like, go into an Airbnb, I can't do this. But too, I appreciate that. So, that's a great example of friendships throughout different neurotypes. And being intentional about the things that we know are going to impact the other. And I knew you did that while we were there. Like, I knew you were definitely like Jen is a verbal processor. And I had to tell Jen, like, "If you're going to say all of these things to me every day, I'm going to take them literally. So, if you need me to do something now, then tell me. But if you are just processing your thoughts, please, like, give me context that that's what's happening. Otherwise, the conversation of like, 'Okay, we need to do this, we need to do this, we need to do this.'" And I'm like, "Fuck, are we doing that right now? Like, what's happening?" So, that was very helpful. And also, like, I know, Jen wants to talk in the morning and I am not a morning person. And every morning that we went and got coffee she'd be, like, holding it in, and I could see it in her face where like, I wasn't even talking, I was just like, pointing direction sometimes because I was like, so tired or like, out of it. And I just want to say that I appreciate that, so it was helpful. JENNIFER AGEE: I got you. Thanks for not letting me get run over because he did pull me in a few times when I was distracted by the beauty of the world. PATRICK CASALE: True story. MEGAN NEFF: I just want to say, like, I love kind of, you're all… Oh my gosh, words, do words stop for me after an hour? Is that what's happening? I love your dynamic and I love getting this inside perspective on Patrick of, and I really appreciate seeing your dynamic. I think it's a really wonderful model of what good cross-neurototype friendship. Like, I wanted to say business but it feels and sounds more like a friendship when you all talk. JENNIFER AGEE: It's a friendship that turned into business, for sure. PATRICK CASALE: And it all started with both of us not liking the other person based on certain stereotypes. MEGAN NEFF: Based on the double empathy problem? Was it because of assumptions you were making about each other? PATRICK CASALE: Yes. JENNIFER AGEE: Yeah, Patrick. PATRICK CASALE: I would talk about what I was assuming on air because it sounds unbelievably discriminatory. JENNIFER AGEE: Yeah, Patrick. PATRICK CASALE: [CROSSTALK 00:59:44] from the Midwest, they're having their first retreat in Gatlinburg, Tennessee. I assume this person is just a terrible human being. I don't want to say associate with this person. Why did I say yes to speak at this event? All the things that are going through my head. And then we met in Hawaii at a conference and like then we spent the next five days together, her and her husband and me and some other friends. And the rest is history. But that was definitely my initial impression, which unfortunately is very often my initial impression is like, I'm already assuming I'm not going to like the person, and I really have to experience them to then change my opinion or perspective. I don't go into a lot of social situations assuming the best, I should say, socially. So, that is a difference in our styles, for sure. JENNIFER AGEE: And I'm the exact opposite. I go into every situation and assume that it's going to be awesome. And if it turns out not to be I just adjust. MEGAN NEFF: I think that's what makes me think you're an EO. Yes, I abbreviate personality assets or factors because the high extraversion, high openness, when you look at personalities, if you were to line up 100 people they are the most optimistic forward thinking people in the world. So, it is interesting to me how well you all gel because that's typically not the autistic person. Like, we're maybe on the other side of the spectrum, often, not always, but… PATRICK CASALE: I think that doing some of these events together that we do, and then having that 30 days…30 days I don't want to travel with anybody, I'm just going to be quite honest. Like, I don't want to travel with my wife for 30 days, I want to travel with anyone by like, halfway through, I was just like, "Oh my God, I'm so done." But it gives you a good glimpse into someone who is very extroverted and optimistic because I think some people in society can also misinterpret that as like, this doesn't feel real, this doesn't feel genuine, this feels really artificial. How can you put this face on every day? I got to see for 30 days that this is just every day. And I thought to myself, "This is wild like that someone can move through the world optimistic all the time." I cannot do that. I feel like I'm optimistic 3% of my life, and that might be generous. So, it was just a very interesting experience. I really wish we would have documented more of it either via writing or video to give different perspectives into the different neurotypes in terms of moving through the world, and traveling, and experiencing all of these places, and transitions, and sensory overload, and stimulation, and everything that went into those 30 days because it was so vastly different. Like, if you can imagine Jennifer in Italy, opening her window, seeing the mountains, and like I imagine there were like bluebirds singing and all sorts of stuff. When I opened my window, my view was of old Italian men arguing with each other every morning. Like, we had very different experiences in every sense of the world. And I almost feel like that is like a good glimpse into actual inner world and inner working. MEGAN NEFF: [CROSSTALK 1:02:46], oh, go ahead. JENNIFER AGEE: Go ahead. MEGAN NEFF: I was going to… Go ahead. JENNIFER AGEE: No, you. MEGAN NEFF: Oh, I was just going to clarify is that because your perception of what your, "I gravitated toward." Was different or because you actually had different… PATRICK CASALE: We actually had very different locations in the hotel we were staying. MEGAN NEFF: Okay. PATRICK CASALE: And she had a really beautiful view. Like, I imagine if I looked at it every day, I also would have been more happy than the vi
Ever wonder what the differences are between the ways non-Autistic ADHDers and Autistic ADHDers process and move through the world? In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, talk with Dr. Donna Henderson, a non-Autistic, ADHDer psychologist, about her personal experience as an ADHDer, as well as explore the overlap and differences between ADHD and autism. Top 3 reasons to listen to the entire episode: Understand what life looks like as an ADHDer in regards to things like executive functioning, sensitivity and reactiveness, conversational tempo, working memory, and task switching. Identify the ways Autism and ADHD can influence how we process information and engage in conversations, as well as how this shows up in relationships. Learn about what it really means to do self-care and how to break free from the generic standards of healthy living to act in alignment with what you actually need and want. There is a surprising number of differences between the way Autistic individuals and ADHDers might experience the world. This episode only covers the experience of one ADHDer, so we encourage you to further explore the nuances and diverse perspectives of ADHDers. More about Dr. Donna Henderson: Dr. Donna Henderson has been a clinical psychologist for over 30 years. She is passionate about identifying and supporting autistic individuals, particularly those who camouflage, and she is co-author (with Drs. Sarah Wayland and Jamell White) of two books: Is This Autism? A guide for clinicians and everyone else and Is This Autism? A companion guide for diagnosing. Dr. Henderson's professional home is The Stixrud Group in Silver Spring, Maryland, where she provides neuropsychological evaluations and consultations for children, adolescents, and adults who would like to understand themselves better. She is a sought-after lecturer on the less obvious presentations of autism, autistic girls and women, PDA, and on parenting children with complex profiles. She also provides case consultations and neurodiversity-affirmative training for other healthcare professionals. Dr. Donna Henderson's Website: drdonnahenderson.com You can grab Dr. Donna Henderson's books here: isthisautism.com Dr. Donna Henderson's Masterclass on PDA (with Neurodivergent Insights): https://learn.neurodivergentinsights.com/pda-masterclass/ (As a listener use “PDA10” to get $10.00 off the Masterclass! Transcript PATRICK CASALE: So, Megan and I are very excited to introduce our little miniseries within a series about interviewing different neurotypes within the neurodivergent and neurodiversity communities. We want to just put a big, big, big, big disclaimer out there that we understand that by interviewing one person per neurotype there are lots of different perspectives, different experiences, one person does not speak for the entirety of a neurotype. And we just want to really make that clear. But we are really excited today for our guest and our interview with our Ask an ADHDer. And I'm going to turn it over to Megan. MEGAN NEFF: Yeah, so likewise, I'm really excited for this series. And I think it's kind of a playful series. And I'm glad you mentioned the disclaimer of, of course, we're not going to nail down all experiences in one interview per neurotype or however many we have. But I cannot think of a better person to be, kind of, getting us started on this process than Dr. Donna Henderson. I am just going to gush over to you for a minute, Dr. Henderson. I hope that's okay with you. I don't like when people gush over me. I hope you have more tolerance for it. DONNA HENDERSON: I have mixed feelings about it. MEGAN NEFF: Okay, we could process that, we have to. I am such a fan of your work, as you know. Dr. Donna Henderson has done a lot in, I would say, advancing the conversation around non-stereotypical autism. She and her co-authors just released two books this summer, Is This Autism? Which is a green book. And then the second one, Clinicians Guide. What's the other book? DONNA HENDERSON: So, they're both called Is This Autism? And the subtitle is different. MEGAN NEFF: The subtitle is different. DONNA HENDERSON: The subtitle of the first one is A Guide for Clinicians and Everyone Else. And the second one is A Companion Guide for Diagnosing. MEGAN NEFF: Got it. So, if you're a clinician, check out the blue book. And if you're everyone else, check out the green book. Am I oversimplifying? I'm sure I am. DONNA HENDERSON: A little bit because we feel really strong… we wrote them as one book and we were very upset when they had to be divided into two books. But you know, I went way over my word limit. And- MEGAN NEFF: Understandably, it's a complex topic. DONNA HENDERSON: It is. And we really want clinicians to start with the first book because the first book tells you kind of know what to look for. And the second book tells you how to look for it. And if you don't know what to look for, it doesn't matter if you know how to use- MEGAN NEFF: I love that- DONNA HENDERSON: [CROSSTALK 00:02:35], yeah. MEGAN NEFF: Okay, I'm actually so glad, like, that was just a divergent trail based on the introduction. But I'm actually really glad we had that conversation because I've been wondering how to recommend your books. And I've read the green one, not the blue one yet. And I remember thinking like, this is so much helpful information for a clinician in training. I want alternative programs to have your book. So, yes, one of the reasons I love your book and I love you is because I think you're putting… So, Routledge just published it. This is a really academic, solid publisher. I think it's really hard for a medical provider to look at the case you put forward and say this is rubbish. And so that is one of the reasons I'm such a fan of your book is you're taking what is, I would say, known in the autistic community, and really putting kind of a research backbone to it, to where it's going to be hard for the field to continue to depend on stereotypical ideas around autism. DONNA HENDERSON: Yeah, and that came from, it's the way I structure my reports. I literally use the DSM diagnostic criteria. And people have all kinds of feelings about them but I think if you actually understand the scope of them, and what they really mean, then they do make sense. And they can be very clinically useful. And so when I write a report for somebody who is autistic and has been misunderstood over and over and over again by their health care professionals and everyone else, I literally write how they meet each diagnostic criteria because I want to arm them with that document, so a future healthcare professional can't say, "Well, I don't think you're autistic." Because they have the proof, you know? MEGAN NEFF: Yeah, yeah, well, and now you've done that for a wide audience, which is why this is so valuable. Okay, I'm bringing myself back on track. So, other than these fantastic books, like, also, I've been at your trainings, I've heard your trainings, I've posted some of your trainings around PDA, around autism in girls. I know there's a podcast that has, like, gone viral where you walk through the DSM criteria for girls. So, you're well-known in this field as an expert on autism. So, you being on our podcast today is a little bit different because we asked you to come on to speak from your personal experience as an ADHDer. I think it's so interesting, here you are at the forefront, I would say, of the clinical research around autism and you're an ADHDer, which you talk less about. I have heard you talk about it here and there, but I haven't heard you talk about it in depth. So, first, I'm just curious, what is it like to be coming onto a podcast where it's not like ask the expert, it's let's talk to Donna the ADHDer? DONNA HENDERSON: It's a little bit nerve-racking, you know? To do, you know, something more personal, but I ask people to tell me their personal stuff all day, every day. So, turnabout is fair play, I guess. And I think one of the reasons I'm drawn to, you know, studying, and working with, and writing about, and talking about autistic people because what resonates with me is I was misunderstood for so many years. You know, I'm 58 years old. And so I had no hope of being diagnosed as an ADHDer when I was a kid. I was also you know, a girl who, you know, found school to be relatively easy. I messed up a lot, I didn't get the best grades, and all that, but it wasn't super effortful for me. And so I had no hope of being identified. I got identified and diagnosed when I was in my, I think, mid to late 30s. And so I understand, to some extent, at least, what it's like to be misunderstood, and then to internalize all the shame and blame, and to, you know, blame yourself, and be really hard on yourself. And then to have that experience of somebody seeing you and saying, "Actually, this is what's been going on." And how unbelievably life-changing that can be. MEGAN NEFF: Yeah. It's so liberating, so liberating. And this is something I think Patrick and I have talked about some, but I'd be curious what some of your internalized labels were? I think different and both shame-based, but I think some of my most, like, just aggressively negative labels I've put on myself is actually more from my ADHD than my autism. Do you feel comfortable sharing what were some of the internalized narratives that came online for you, having been undiagnosed till your thirties? DONNA HENDERSON: Sure. Definitely, when I was younger, like in high school and college, lazy. I knew I was smart, I knew I was capable of, you know, advancing in my academic career, and yet, you know, I avoided hard work, I couldn't sustain attention or effort sometimes. And so, definitely, I thought of myself as lazy. And now I realize I'm absolutely anything but lazy. MEGAN NEFF: Right, when you literally just came out with two books this summer. DONNA HENDERSON: Yeah, so that's been a big change. But that was, you know, the first half of my life, I definitely thought of myself as lazy. One that I'm still really struggling with is sensitive. I grew up with people constantly saying, "You're so sensitive, you're so sensitive." In a negative way. And I definitely internalized that as something incredibly negative. And now, I definitely still struggle with it and there are many times I wish I was less sensitive, and I get mad at myself for having such big emotional reactions. But at least I understand it's not a character or logical problem, this is my wiring. And that gives me a fighting chance of not, you know, blaming myself at the end of the day. MEGAN NEFF: I love how you word that, not a character or logical, it's my wiring. Okay, so this is going to kind of trail us somewhere. And I'm curious what you mean by sensitivity? Because I know like emotional regulation is harder when we're ADHDers. But also, I'm thinking about like, HSP, highly sensitive person kind of phenotype. Something I see a lot in the autistic community right now are folks saying and I used to say this too, focusing HSP is just a repackaging of autistic traits. I've backed off that because I've now seen and, like one of my kids is an ADHDer who also wouldn't be considered HSP. I'm curious, like, does the HSP, that highly sensitive person, is that part of what you meant by sensitive? Does that fit your experience? DONNA HENDERSON: I read that book so long ago, it's hard to for me to remember. MEGAN NEFF: Yeah, it's- DONNA HENDERSON: I could say, I'll sort of make a differentiation, I think. My sensitivity, I would say, most of it, is about me feeling judged or criticized easily. MEGAN NEFF: Okay. So, like rejection sensitivity, emotion regulation sensitivity. DONNA HENDERSON: Yes, exactly- MEGAN NEFF: Okay, cool. No, that's what I was- DONNA HENDERSON: It's very specific to that as opposed to a more general, like I just finished a parent interview this morning about their daughter who, you know, I don't know yet, but I suspect she's autistic. And my gosh, this poor girl is hypersensitive to everything, just everything, throwing out a used crayon, she feels really badly for the crayon, but like, you know, it's so generalized her sensitivity, and you know, sensory stuff, and all of that. I don't experience that level of very generalized sensitivity. For me, it's that specific sort of RSD kind of thing. MEGAN NEFF: I love how you can put words around this stuff. Okay, so sensory, that's a big overlap, but I like how, again, you are… and I feel like another conversations I've had with you it's the globalness of some of the things that distinguish like autism from ADHD. But, yeah, what is your kind of sensory experience of the world? DONNA HENDERSON: Yeah, so I think my perspective is that ADHDers and autistic people, one area of overlap with sensory stuff is hyperresponsivity to, you know, all kinds of things. You know, noises, lights, whatever. And I have a little bit of that. It's just a little though it doesn't majorly affect my life. I put on clothes that feel comfortable to me, that may or may not look great. But comfort is the most important thing. If I have to wear something uncomfortable, though, it's not the hugest deal in the world. So, I would call it a minor hypersensitivity. So, as opposed to one of… well, I won't get into that story, never mind. I think that sort of hyperresponsivity is pretty typical in a lot of ADHDers. What I don't see a lot in ADHDers, but I see more in autistic people is hyporesponsivity, being less responsive to internal or external sensations. And I don't see a lot of atypical sensory craving. Sometimes sensation seeking if you have hyperactivity impulsivity, but not atypical sensory craving, like looking objects or smelling objects. That's just not typical. MEGAN NEFF: I love that. Okay. And this is more question for clinical Dr. Henderson. I've often thought hypo responsivity and sensory seeking kind of went together. Like, if someone was hypo, then they might be sensory seeking because they're looking for that additional input. But am I kind of conflating ideas there? DONNA HENDERSON: I mean, I think they can go together, but I think of them as separate things, you know? And when I think of hyporesponsivity, I think of interoception more than any other sensory system really, and like not perceiving, or contextualizing, or understanding, or responding to your internal sensations as much. MEGAN NEFF: So, like, with interoception would you have pretty accurate understanding of what's happening inside your body? DONNA HENDERSON: Me? MEGAN NEFF: Mm-hmm (affirmative.) DONNA HENDERSON: I think so. I mean, when I've learned about it, it never resonated with me, I'm like, "Oh, my God, that explains it." Now my son, who is autistic, he's 22 years old. He has really, really, really low interoceptive awareness. And it's so important, I think, for clinicians and for everybody to understand this because I think people call it denial if they don't understand the physiological basis. MEGAN NEFF: Absolutely, yeah. DONNA HENDERSON: And I remember once he was in therapy with someone for he has a really bad needle phobia. And this became a crisis when he needed the COVID vaccine, of course, and so he was in in therapy for that. And she was doing a hierarchy, and she had him watch a video of somebody getting a shot. And he literally, like, scooted his chair back, he gasped, he put his hand to his mouth, and she stopped the video and said, "So, you're feeling anxious?" And he said, "No, I'm not." And I think that therapist could mistakenly call that denial, which is a psychological defense mechanism. But no, he genuinely did not realize he was anxious and that's really global for him. MEGAN NEFF: Yeah, yeah, yeah. I have so many thoughts, but Patrick, I've been hogging the conversation, so… PATRICK CASALE: You can continue to hog it. I'm lost in my own head. So, I'm just paying attention and listening. MEGAN NEFF: Patrick flew yesterday, he traveled yesterday. PATRICK CASALE: Yeah, I had at 5:00 AM flight out of California- DONNA HENDERSON: Oh, my God. PATRICK CASALE: Got back to East Coast at 7:30 PM. So, my brain is not online. DONNA HENDERSON: I feel you and I love it [CROSSTALK 00:14:58]. No, I was just going to say that. And you know what, that's something that has evolved for me as an ADHDer. I used to try to hide it a lot more. And now I'll say things like that, you know whether or not I have a good excuse like you do. I'm more willing to say in conversations, you know what? I just completely blanked out for no good reason. I actually really want to hear what you just said. Can you tell me again? And it's sort of freeing to be able to do that and not to constantly feel like I have to pretend I'm paying attention perfectly well all the time. PATRICK CASALE: Megan and I just released our episode on masking. And that is just kind of the definition for me, in regards to communicating how I'm experiencing conversation or social interaction, is just to be like, I'm not really able to follow this or pay attention to this right now. I'm sorry. Like, I'm here, but I'm not here. DONNA HENDERSON: Right. MEGAN NEFF: Yeah, yeah, yeah. I think that's a beautiful example of ADHD and masking to be able to own like, I'm sorry, my brain's space off, I do care about you. One, I've been getting more and more requests for resources for ADHD couples. You know, Kate McNulty has a great book for autistic partners. But I am yet to find like a really good book for ADHD partnerships. And I think this sort of thing happens a lot where the ADHD partner, we get distracted or we misplace something significant like keys, and the other partner experiences it as us not caring. DONNA HENDERSON: Yes. MEGAN NEFF: And yes, so I love how you model that ability to be able to say, whether it's to your spouse, or to someone else, like actually, I do care about you, my brain just, you know, went offline for a minute, DONNA HENDERSON: Right, but it's hard because, you know, it takes a lot of self-awareness on everybody's part. And then it takes communication on everybody's part. So, here's an example. I listen late. So, when somebody starts talking to me, it takes me a few seconds to realize, "Oh, this person's talking to me, and I missed the first sentence." Right? And so my husband will walk into my, you know, I'm in my home office now. He'll frequently just walk in and start talking while I'm writing. And then by the time I realize he's talking, I've missed, you know, the important first sentence or two, and then he gets upset. Like, "Hey, how come you don't listen to me?" And so I've had to explain, here's what I need, I need you to walk to me, say my name, and wait for me to look up, and then problem solved, right? MEGAN NEFF: I love that because I feel like that's like advice you give ADHD parents. Like, get their name, get some sort of, like, visual cue. That's been so helpful in my family since discovering, you know, the majority of us are neurodivergent is task-switching language. Like, so if a child now comes up to me because that used to happen a lot with children, I'd be hyper-focused. And I'll now say like, I need three minutes to task switch out of this, and then I'll be able to help you. And to be able to just have that language of like, "Give me a minute to task switch then I can actually take in your words." But yeah, I think that was actually one of our questions we wanted to ask you was around like, task switching, hyper-focus. Sounds like you're- DONNA HENDERSON: Oh, God, switching, it's like my nemesis. I mean, sometimes I switch too easily, right? I'm writing a report, I'm into it, and I'll randomly think, "I should check my email." And then I do. And I realized that that's not, I'm trying not to judge myself too much for that because, as Johann Hari says, in his amazing book on attention, you know, there are 10,000 engineers on the other side of your screen that are doing that to you, right? There are forces that have nothing to do with my ADHD that are pulling my attention in this culture that we're now living in. But yeah, sometimes I switch too easily. And then other times, I can't switch when I want to switch. So, I wish I just had more control over my switching and as a hyperactive type ADHDer, I need a lot of stimulation. So, I tend to jump from one task to another, which is not good, you know? It makes you make mistakes, and makes up less efficient, and is sort of tiring. So, what's a girl to do when she needs a lot of stimulation, and which switch, right? MEGAN NEFF: I call it my tree branch projects where I will like, I'll switch to something because it might be like, I'll check my email, but then, like, will turn into this huge project and like, I'll be five steps over on a project. And like, how did I get on this? Like, why am I making a new landing page with a new… Like, why? Oh, because I checked my email, and that led to this which led to this, which I think I've found ways to structure my life where I have space for tree branch projects, which I've noticed that reduces my executive, like, stress a lot just by having the bandwidth to be able to chase those. But it is really stressful. And it's like, I just want to get this thing done, but I'm five steps over here. DONNA HENDERSON: Yeah, but what I'm hearing is that you sort of changed the narrative about it. And so it's not necessarily a bad thing when you go off and do a new project. It's a branch of the tree, you know? And every branch has its own place, right? So, just thinking about it differently could be helpful. MEGAN NEFF: Yeah, yeah. And I think- PATRICK CASALE: And because I think you can- MEGAN NEFF: Yeah, oh go ahead. PATRICK CASALE: Sorry. I think you can get into the narrative, you know, especially, for a lot of ADHDers of like those "tree branch projects" that Megan's referencing as like, "I can't finish anything, I can't follow through with anything. Every time I start something, I diverge somewhere else and that makes me really frustrated with myself." So, just the ability to reframe that and think about it differently. I think, like you're saying, Donna, is super helpful. DONNA HENDERSON: Yeah, I'm really great at starting things. MEGAN NEFF: This is where I think my autism really helps my ADHD is I typically do finish projects. There's a lot of unfinished projects, but I typically do because the stress of having, like the completionist in me, the stress of it having it incompleted it is too stressful. And I've often wondered, like, how do you all do it? How to ADHDers who don't have the support of autism, like, do it? So, yeah, like finishing tasks, how do you navigate that? DONNA HENDERSON: So, when I'm doing something for other people, it's super helpful, like when other people are counting on me to get something done. MEGAN NEFF: And is the RSD, like, helping with that then? DONNA HENDERSON: For sure, for sure. And I think that's just part of my nature. And you know, what's important to me. Honestly, I get a lot of help. My husband has amazing executive functioning. I have terrible executive functioning. And so he makes a lot of decisions, he does most of our planning, and it works out really, really well for us. And I'm lucky, we didn't know this about each other when we got married, but it's worked out well. And at work, I used to try to manage my own schedule and I was a disaster. I made constant mistakes. I would triple-check something and still get it wrong. And I've just remembered, you know, Bill [INDISCERNIBLE 00:22:31] he wrote some great books. He's my mentor, and I once showed up at his house on a night when there was no meeting, no plan for me to be there. I literally walked in, like, "Hey." And he and his wife looked at me like, "What are you doing here?" I mean, that's how calendar-challenged I am. And so I finally accepted that. And so at work, I now have somebody who manages my schedule. And it takes all of the decision-making and planning off my plate. And I listened to your PDA episode and I heard you, you know, talk about you needing control over your schedule, that's the exact opposite of what I need. I love it when somebody else decides what my schedule will look like. And then I wake up in the morning, and they hand it to me, and I follow it. Yeah. MEGAN NEFF: [CROSSTALK 00:23:23] I wonder if, oh- PATRICK CASALE: Sorry. Well, it's interesting, that's- MEGAN NEFF: I'm curious if that's one of those subtle differences between ADHD and autism. Again, there'll be diversity, but like, yeah, my autistic daughter, it's like, what is the schedule? Let's make it together. Like, there's got to be urgency in creating the schedule. My ADHD is like, "Stop giving me decisions." Like, just give me breakfast. Like, just tell me what to wear. Just tell me what we're going to do today. So, I hadn't thought about that before. But like how we feel about our schedule and who's in control of it [CROSSTALK 00:23:59] subtle. DONNA HENDERSON: Yeah, it would be an interesting thing to think about. We'd have to sort out the non-PDA autistics from the PDA autistics, of course, and then, so many autistic people also have ADHD. So, it could be messy. But it's an interesting thing to think about, you know. And for me, you know, the important thing is, knowing that about yourself, and trying to set up your life to accommodate that and not judging yourself. Like, I used to get really frustrated with myself for being so bad at planning, and scheduling, and all that. And now it's another one of those things I can own and say, "Yeah, I'm terrible at that, and that's okay. I'm going to get help. You know? MEGAN NEFF: And that's the nice thing is if there's a lot- PATRICK CASALE: That was actually going to be my question. MEGAN NEFF: Oh, go ahead. PATRICK CASALE: It's great, Megan and I are going to do this a lot today. That was going to be my question that you just answered Donna, was like, was there shame, and guilt, and frustration building up when, and initially it was like, why can't I do this? Why is this so challenging for me? DONNA HENDERSON: Yeah, yeah, and I just kept thinking, "Donna, come on, concentrate, concentrate, you know, stop being so distracted." And get so mad at myself. And obviously, it's embarrassing too, you know, walking into somebody's house and just, you know, the million and one times I just screwed up my schedule. And now I have to laugh at myself and I have to be okay. Dina Gassner said something really, really smart, wise, wise to me, once. Dina is an autistic researcher. And she wrote one of the forwards for one of my books, and she said, "The goal for any of us isn't independence, it's interdependence. It's understanding all the ways that you do and inevitably will depend on other people." And that's okay, right? MEGAN NEFF: I love that, I love that. Yeah, especially, in psychology, there's a lot of focus on the individual. And I'm writing a book right now, Self-care for Autistic People, just kind of funny because I have a weird relationship to the term self-care because I feel like so much pop psychology is self-care, but without that interpersonal relational lens that, like, we are interdependent. Like, we have always been, modernity gives us the illusion we're not. But we do best when we're actually supporting kind of interdependence. DONNA HENDERSON: Right, absolutely, yeah. I'm glad you're writing that book. I knew you were working on something. I didn't know it was that and I'm tired of all the self-care advice being exercise more, eat right, get enough sleep. Like, of course, those things are important, of course, they are. But you know, there's so much more to it than that. And those things are so hard for so many people, right? MEGAN NEFF: Yeah. For both ADHDers and autistic people, right? Like, if you think about the executive functioning that goes into any of those tasks you just listed. DONNA HENDERSON: Right, right, yeah. MEGAN NEFF: So, like… DONNA HENDERSON: Yeah, I'm going to try to think about how to say this without outing somebody. So, I have a challenging relationship with someone in my life who is not an immediate family member. And that person says hurtful things to me. And for years, I have then immediately, without thinking about it reacted and said things that I regret because I don't want to be hurtful or disrespectful, and also, because it just feels crappy when you lose it a little bit and say things you regret. And I've been working on paying attention to what's happening in my body when that person says hurtful things. And so, you know, recently that person said something hurtful, and I was able to just notice, oh, my heart rate just escalated. Wow, like, I hear sort of a whooshing sound in my ears, my muscles just tensed and I feel like I'm preparing for a fight. And I was aware of my body. And because I could do that, it allowed me the three seconds of grace I needed to not just say something, but to respond in a way that I was proud of. And to me, that's sort of the beginning of self-care, to be able to notice what the heck is happening with your own body, right? MEGAN NEFF: I love that. I love how you connected that, like, having that internal narrator of like I'm naming and narrating and, like, I sometimes call that self-attunement because we're attuning to ourselves. I love thinking about that as the basis of self-care. And I steal that from my book. I love that idea so much. DONNA HENDERSON: Absolute, yeah. And I'm sure I'm not the first person who made that connection. But when I think about self-care, yeah, but I love that phrase. That's the first step is you have to be attuned to what's going on with yourself, you know, before you can do anything else, you have to know you're tired before you try to get some sleep. You have to know you're hungry before you try to put some food in your body. It's pretty basic, MEGAN NEFF: Which gets back to that entire assumption, if it's not basic then nothing about self-care is basic, yeah. DONNA HENDERSON: Right, that's true. MEGAN NEFF: Can I… I don't know why I'm asking permission to diverge [INDISCERNIBLE 00:29:36]. DONNA HENDERSON: I know, right? MEGAN NEFF: Because I'm very cognizant of like, I feel like I'm talking a lot, but there's one piece I want to make sure I get on our conversation today. And this is a conversation, I don't know if you remember us having it. It was probably one of the first or second times you and I had met. So, there's this term context blindness. I don't like the term myself. I prefer, like, I'll talk about out high context communication that gets into anthropology, which is confusing, need for high context communication. But there's a conversation where I asked, like, I was saying how, you know, someone asked me like, what's my favorite book? I really struggle with this. Do you remember this conversation? DONNA HENDERSON: No, I don't. MEGAN NEFF: And okay, so I asked you, and I was saying how like, I would struggle with that because I'd be thinking about what bucket are we talking about? Are we talking about psychology buckets? Are we talking about fantasy books? Like, how do I possibly pick one favorite book? What's the context? And what you said, you were like, "Well, for me, if my neighbor was asking it, like this book would pop in my head. Whereas if I was at work, this book will pop in my head." And I remember asking you, "Like, you mean, you're not analytically like sifting through all that." And that was such an aha moment for me around, there's definitely something different for an ADHDer who's not also autistic around intuitively, I guess, picking up context cues would be the way to say that. DONNA HENDERSON: Yeah. So, my friend, Dr. Amara Brooke, who's a psychologist- MEGAN NEFF: Yeah, she's great. DONNA HENDERSON: Do you know… yeah, well, she once in a conversation with me called it context independence. So, I liked it. MEGAN NEFF: Oh, I like that term. DONNA HENDERSON: Right. It was too late, the book had already gotten to press. I couldn't stick it in the book. But I liked it. It's context independence, right? MEGAN NEFF: Yeah, because it doesn't depend on the context. I'm not going to change my authentic self based on the context. DONNA HENDERSON: Right, right. And so there's no right or wrong. There's two different ways of, sort of, moving through the world. And for non-autistic people, for the most part, well, everybody has top-down and bottom-up processing, right? So, I'm going to oversimplify, but for most non-autistic people, the top-down processing is prioritized. And so we take the context first. And here's the key, that happens for us subcortically, automatically, within milliseconds without our awareness. It just- MEGAN NEFF: And it's not through the prefrontal cortex, right? DONNA HENDERSON: Correct. It's subcortical, right? Correct. There's no awareness, there's no effort the overwhelming majority of the time. It just happens like magic, right? MEGAN NEFF: It's so [INDISCERNIBLE 00:32:25]. DONNA HENDERSON: But for most autistic people, there's more of a bottom-up processing where you have to take in all the details, get all the details, and sort of build up to the big picture from there. And, again, not better or worse, but there are different advantages and disadvantages to each style. And a huge, huge disadvantage to the context-independent style, the autistic style, is the time, and energy, and effort that it takes to move through all of that information when you're under pressure to respond to somebody, right? And so often, I get, you know, referrals for kids, or adolescents, or adults where everybody is saying, "We think they have slow processing speed." But on testing, their processing speed is just fine because testing does not require context. So, it's working tempo, it's conversational tempo that you might need extra time to build up to figure out the context. Does that make sense? MEGAN NEFF: Totally, yeah. I see something similar that often autistic people are deep processors, not slow processor. Like, we're processing so much so deeply that it takes more time. Yeah, absolutely. DONNA HENDERSON: Yeah, for sure, for sure. Especially, compared to, you know, a hyperactive impulsive style ADHDer like me, we tend to be fast, and, you know, I don't always go as deep. I'm capable of going as deep. But as I move through my day, it's not my natural way of being. MEGAN NEFF: So, in my first Venn diagram was putting autism and ADHD together. I put high-context communication in the middle because I talk with a lot of ADHDers where it feels like they share a lot of context to get to what I think neurotypical people might call the point. Like, how would you categorize that in the top down, bottom down? Or is that totally unrelated? And also, do you also observe that in ADHDers or on also autistic kind of a high context way of sharing stories or divergent to the point. DONNA HENDERSON: In the people I've known who are most context-independent or in the traditional term, you know, have the most context blindness, I haven't noticed, like, it would be interesting for me to go back and look how many of them also had ADHD, right? I think I might do that because that would be very, very interesting. And I've lost track of your question now. MEGAN NEFF: I love that. DONNA HENDERSON: I have no working memory. MEGAN NEFF: Like, if high context communication or like, in telling a story needing to share a lot of context, if that feels like an ADHD thing, or, again, maybe [CROSSTALK 00:35:20]- DONNA HENDERSON: No. MEGAN NEFF: …autism, that doesn't feel like maybe it's too- DONNA HENDERSON: No, to me that feels like if you don't intuitively have the context of what your listener already knows and actually needs to know or wants to know, you're at risk of giving too many details or too few details, right? And that happens sometimes too. MEGAN NEFF: All the time. Like, I do this, I hear this all the time. I either I'm sharing not enough or too much. Like magical Goldilocks of just enough information. DONNA HENDERSON: And to me as a non-autistic ADHDer, that's very intuitive. Like, how much detail to give someone in any given moment, and I'm not saying I, you know, get it right 100% of the time, obviously, but for the most part, it's pretty intuitive and easy for me to know that. And I've never had like a complaint about that. MEGAN NEFF: That's fascinating. I did think that was kind of an ADHD thing to, like, share long-winded, verbose stories that diverged all over the place. But that's really interesting to hear you say that. DONNA HENDERSON: Yeah, I think ADHDers, you know, sometimes we maybe talk a lot, or can be interrupting, or maybe go a little bit off-topic, but to have a pattern of providing too much what we would call irrelevant detail because that's really what you're talking about. I don't personally see that as an ADHD thing. It's not for me, it's not something I've noticed in my clients. PATRICK CASALE: Sometimes I wonder if that being an autistic trait, if it's also because you're trying so hard to read the other person's body language and facial expressions of how are they reacting to said information. And if I'm not getting the reaction that I think I should be getting, then I'm offering more and more and more information. And then I get lost in that explanation. And then I'm like, "Did that even make sense?" And the person is like, "No, I didn't track that at all." My wife will look at me and be like, "Why are you telling me all of this?" I'm like, "I was trying to figure out where the reaction was to what I was saying, and then, ultimately, I get lost in that." DONNA HENDERSON: And would it like feel natural for you or not to just like, what I would do in that moment is say, I can't read your reaction or I'm not sure if you want to hear more about this. Like, I would check in with the person verbally. PATRICK CASALE: No, I don't think that comes to mind immediately for me, when I'm in a conversation like that. I think it's just like, I get this anxious process that comes over me where I'm like, "Oh, my God, I don't know where to go from here. And now I feel trapped in this conversation." DONNA HENDERSON: And I wonder if that's, you know, partially just non-autistic conversations not being intuitive for you, and partially just having had bad experiences with conversations in the past, then they bring out that anxiety. And, like, so I don't happen to have either of those differences. And so for me, if I'm in a conversation, and I feel like wait, we're having a disconnect, the most natural thing is to be like, "Hey, I think we might be having a disconnect. What's going on? Like, what do you want? Do you want me to talk more or less? What's happening?" PATRICK CASALE: Save me a lot of time connecting. DONNA HENDERSON: Yeah. MEGAN NEFF: And I do that too, Donna. And I think I've trained myself, like I have developed a hypervigilance, and I think this is part of autistic ADHD masking, a hypervigilance to other people. So, for me, like, gaining psychological safety in conversation is knowing what's happening. So, I'll do a lot of like, "Okay, what's happening here?" The only therapists that I've actually worked well with was someone who was willing to do interpersonal work with me because I don't feel psychologically safe in a conversation unless I can check in with the other person and get an honest answer about what they're experiencing in that moment. DONNA HENDERSON: Yeah, that makes a lot of sense to me. And I think I've heard similar, you know, experiences from quite a lot of autistic people, late diagnosed autistic people, in particular, yeah, yeah. MEGAN NEFF: Yeah. Okay, small talk. Like, I've heard you talk about bread crumbs. You pick them up, like do you like small talk? Do you tolerate small talk? Like, I know you're good at it. DONNA HENDERSON: Yeah. So, I have to tell you this story. Sorry, I'm going to take a drink of water first. Sorry about that. So, I have a colleague who is autistic. And his name is Eric. And we've worked together for over a decade. And we work very well together. And I walked into his office one morning, I was in a big hurry. And I said, "Hey, the client you're seeing today…" And then I caught myself and said, "I'm sorry, that was so rude of me, how was your weekend?" And he laughed, and he was like, "Seriously, I do not need you to ask me about my weekend. I do that for you guys, meaning all of us non-autistic colleagues. And I'm good if we never ever do that again." And to be clear, like, I think Eric and I like really like each other and work very, very well together. But he's like, "There's no need to get into any of those social niceties." So, that was probably two, maybe three years ago. I cannot tell you how hard it is for me to like, engage my prefrontal lobe and stop my natural way of interacting when I see him and not say, "Hey, what's new? How's your daughter? What's going on? You're taking a vacation this summer?" It's so hard. MEGAN NEFF: But you're putting on a break to not do that. Like, for me and I think for Patrick, it's like forcing myself. It's like, I have to hit the gas to get myself to ask those damn questions that I really don't like. But for you, it's like putting on a break, it's holding something back. DONNA HENDERSON: That's exactly right. And I feel like it gives me this tiny little window into what it must be like to be autistic and to have to be, like, very aware in the moment of this is what my urge is to do in this situation. But this is what I must do if I want this situation to be comfortable for the other person. It's hard. And I only have one person I do that with. MEGAN NEFF: That's such a great example of the double empathy problem of like this two-way street of like, it's just a different cultural reference of how we're communicating. I had never thought about small talk that way as like, hard to hold it back. I have a lot more empathy all of a sudden for people. DONNA HENDERSON: Well, but most of us don't hold it back, right? I mean, it's just sort of unnatural. Like, if I see one of my neighbors, I'm like, I will cross the street in order to just make small talk for five or 10 minutes because for me, that's very… Patrick's laughing. PATRICK CASALE: [CROSSTALK 00:42:17] right now with my neighbor trying to do that to me the other day and me pretending not to hear them, and like getting in my car, and like backing out the driveway looking at them in the eye like… MEGAN NEFF: I literally cross the road. Like, if I see someone I'm I going to cross, I will cross the road, but I'll do it soon enough, so it doesn't look like I'm doing it to avoid them. But I will cross the road even to avoid eye contact. DONNA HENDERSON: Yeah, yeah. MEGAN NEFF: Like, just to avoid, like, any sensory experience of interacting with another human body. DONNA HENDERSON: All right, so I know you're supposed to be asking me questions. But may I ask you guys a question about this? MEGAN NEFF: Yeah, absolutely. DONNA HENDERSON: So, with my son, and he wouldn't mind me saying this, you know, as a non-autistic person, one of the ways I feel connected with other people is by connecting verbally, by talking. And it's not always deep and important. A lot of times it's, "So, what you're doing tonight? How was your day?" And kind of stuff, which is like the absolute last thing in the world he ever wants to do. And so the only way I've ever figured out of really connecting with him is to sort of go entirely to where he is. He loves military history, so like to go to a battlefield with him, to go to a battle reenactment with him, which is like my idea of hell. But I do it because like, that's… but I don't know, like how to bridge the gap so it's not, you know, one way or the other way, but that we can build some connection. You know what I mean? MEGAN NEFF: Absolutely, absolutely. First of all, I love that as a parent you're doing that. You're entering into their, I call it special interests, like our ecosystems, that you're entering into his ecosystem. Because you're right, like Patrick and I have talked about this a lot of, if you want to get access to the inner world of an autistic person, like entering through special interests. And I think a lot of parents who are trying to figure out how to connect with their autistic kids, I think that's often what they're doing. DONNA HENDERSON: Yeah. MEGAN NEFF: But yeah, it'd be nice for you not to have to go to like a historical event to connect with your son. And so, yeah, I think talking about it, like, and I don't know if there's a way of like talking about it without doing it. But that's often how, even if it's just to warm up the conversation, right? Because the questions are like, "What are you doing tonight?" Like, to me, that would be a sensory demand. But if the conversation has been warmed up through a special interest and then if we're able to then link to other things that, yeah, I think about it as a warm-up. And again, from a nervous system lens of like, if it's just a question that's invoking a deep response, that's a demand, my nervous system isn't warmed up for social interaction. But if it's been kind of melted and warmed through talking about something of interest, and then diverging to something that might feel more connecting for both of you, that's one approach I take. I don't know, Patrick, do you have thoughts on that? PATRICK CASALE: Yeah, I think that for people in my life, where I don't necessarily have safety, or I can be my true self around them, then that small talk, that demand, I'm going to shoot it down pretty quickly. And that's probably where I would really appreciate, you know, moving into the conversation through even a subset of the special interests or just something in general, that felt much more interest-focused. But for people who I have regular contact with, like, several of my best friends, my wife, etc., like, there's definitely small talk that goes on just because the relationship feels safe. And I also understand that that's what they need in a lot of ways in order to have some sort of reciprocity in the relationship. So, I'm not like freely giving it out, I'm not going out of my way to have it. But I'm certainly much more amenable to that. If my mom wants to call me right now. And like, say, "Hey, how was your weekend? How was your birthday?" I'd be like, "It was fine. It was fine." But it's just a very different relationship for me. So, I do think it matters for me, specifically, on the relationship, on the context of the relationship too, and the safety that has already been established in terms of just communication. And I think it's complicated. Like, there are definitely times where my wife is asking me questions. And I'm like, "I don't want to have like the small talk conversation with you right now". And I will be able to name that. Megan's been able to name that with me before when I said, "Hey, Megan, how was your day?" And she's like, "Stop asking me that." So, I think it's about being able to also ask for what you need in that moment. Like, hey, stop asking me that because that's not helpful here. This isn't where you have to interact that way, that's really helpful for me." DONNA HENDERSON: Right, right. And for me as a non-autistic person, it's also, I'm working on not thinking of there being a right way and a wrong way to interact. And it's really hard for me, it's really hard, yeah. PATRICK CASALE: For sure. MEGAN NEFF: It's hard to not think there's a right and a wrong way. DONNA HENDERSON: Yeah, I think my way is the right way. MEGAN NEFF: No, and don't we all as humans, too. DONNA HENDERSON: Sure, sure, yeah. MEGAN NEFF: Yeah. I'm like looking at the clock and now I'm feeling pressure of like, we should have some profound ending, I should have some profound question. Like, what is your favorite part about being an ADHDer? Or what is the hardest part? I don't know [CROSSTALK 00:47:56]- DONNA HENDERSON: I want to bring something, yeah- MEGAN NEFF: Yeah, go ahead. DONNA HENDERSON: No, there's no pressure because we're just going to do our awkward goodbye in a minute and it'll be excellent. But I want to bring up one thing that I wonder about is a difference, and obviously, everybody's an individual, but working memory, I think about. I've met so many autistic people who don't have ADHD, who have absolutely phenomenal working memory. Like, phenomenal working memory. MEGAN NEFF: Yes. DONNA HENDERSON: And I as an ADHDer have, like, absolutely terrible, terrible working memory. And for those of your listeners who aren't super familiar, I tell kids, it's the blackboard in your brain where you can write something down while you're working on it. And I write in disappearing ink on my blackboard. MEGAN NEFF: Same. DONNA HENDERSON: And, you know, one thing I've noticed, just with family members who have great working memories, they think a lot about the past and the future. And I am almost incapable of thinking about the past and the future. I just am very much in the moment and that leads to my difficulty with planning. And it's good and bad, right? They are so much better than I am at planning because they can hold the future in their brains. And, you know, think of different scenarios and choose the best scenario, which is very hard for me to do, but they also obsess a lot about the past and the future, which I don't tend to do. So, it's just something I've thought about as a difference. MEGAN NEFF: And that like, and I don't love this. I think, in general, we're going to find ways of moving away from ableist language but time blindness is how, like, that's often referred about of just the here and the now. And I love how you both see like what it gives you, but also what it takes from you, right? There is less of that obsessive. I think I've noticed that, too. I hadn't connected the obsessive tendency toward, you're right, that lack of lack of time blindness, but like that ability to perceive the future and the past definitely leaves us vulnerable. Somehow I managed to have both. I both struggle with time perception and my working memory is terrible. But I also do think a lot about the future and the past. DONNA HENDERSON: Well, maybe my theory is wrong, then. MEGAN NEFF: Well, I mean, maybe it's part of being an autistic ADHDer, maybe there's, yeah. DONNA HENDERSON: Yeah. MEGAN NEFF: Do you do both Patrick? PATRICK CASALE: I obsess about the past and the future constantly. And I'm a really good planner. I mean, I'm planning entire events, and retreats, or things that feel very natural to me. I really struggle moment to moment working memory where I will forget what I'm doing during the day all the time. I'll forget like, why I went down to the kitchen for something. I will forget like the three things that are in my mind that if I don't write them down immediately or respond to immediately they'll be gone. But everything else is constantly obsessing, and thinking about, and analyzing, and processing all the different alternative outcomes, so quite exhausting. MEGAN NEFF: Yeah, that's my experience too, what you just described. DONNA HENDERSON: As a non-autistic ADHDer, like, everything you just, I can't relate to that, that constantly, like planning, and obsessing, and running scenarios that you're… I'm like, "Oh, God, make it stop." Like, I just don't do that, which it's a blessing and a curse, right? PATRICK CASALE: For sure. And, you know, I've said it very often that I wish I could just turn it all off. Like, I wish I could just stop it. And yeah, definitely, it's exhausting. DONNA HENDERSON: It sounds exhausting. PATRICK CASALE: And on that really negative note, this has been fun. DONNA HENDERSON: I'll give you a quick positive, I don't want to end on a negative. Do I have time to do a quick positive- PATRICK CASALE: Yeah, sure, absolutely. DONNA HENDERSON: …so we don't end up… So, I tried stimulant medication a little bit over the past year, which I haven't really done in the past. And it really worked well for me in that it took away the urge to constantly move. I was able to sit still. I was able to get so much work done. But then I inevitably ended up with like a headache or my neck would be stiff, or my back would hurt. And I finally realized and I changed my internal narrative, my body is helping me out by wanting to move all the time. That's what my body needs. And I just need to lean into that and not try to fight who I am and my wiring. PATRICK CASALE: I love that. MEGAN NEFF: I love that. I love thinking through like, yeah, the ways your body and these things we call symptoms are actually working for you, and helping you out, and telling you what you need, yeah. PATRICK CASALE: Absolutely, yeah. Well, this has been a lot of fun and I wish that… I'm surprised like the hour went like that. And it was really, really great to have this conversation. I feel like we could have continuations of this for sure and go down so many different, like, areas and different perspectives. So, thank you so much for coming on and just sharing some of your story, too. DONNA HENDERSON: Well, thank you so much for having me. I agree, it went quickly and it was a lot of fun. PATRICK CASALE: Megan, you any got anything before I awkwardly sign us off? MEGAN NEFF: This is the part I get really awkward at. I'm so glad you came on Donna. Like, this has been, like, so fun to have this kind of hybrid clinical personal conversation. And thank you for your vulnerability. I know it is different to bring our lived experience to the conversation, especially, as clinical psychologists. We're kind of taught not to do that. So, thank you for being willing to do that. PATRICK CASALE: Totally. So, for everyone listening to the Divergent Conversations Podcast, new episodes are out every single Friday on all major platforms and YouTube. You can like, download, subscribe, and share. And Donna just made me realize while I was saying that we didn't give you any opportunity to share where they can find more of your work too. So, please feel free to- DONNA HENDERSON: Oh, okay. PATRICK CASALE: …share that as well. We'll put it in the show notes. DONNA HENDERSON: That would never have occurred to me actually. I'm the worst with that. My website is drdonnahenderson.com. And the website for the books is isthisautism.com. PATRICK CASALE: Perfect. All of that will be in the show notes so everyone has easy access as well. And now I don't know what else to say, so goodbye.
Autism and narcissism can sometimes get lumped together in conversations, but despite there being some seemingly overlapping traits, it is important to not generalize all people with narcissistic traits as individuals with a narcissistic personality disorder. In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, talk about the stereotypes, misconceptions, and misunderstandings surrounding autism and narcissism, as well as the traits that are often perceived to go with them. Top 3 reasons to listen to the entire episode: Understand how social media, a more polarized society with low tolerance for disagreements, and privilege have impacted and shaped the use of the terms Autistic and narcissistic. Identify some of the ways and reasons that Autistic individuals may face challenges in perceiving the world from someone else's perspective, leading to misunderstandings in relationships and conflict in the workplace. Learn how communication styles, the ways autistic individuals find connection, and alexithymia can lead to mislabeling autistic people as unempathetic or narcissistic. Both diagnoses are complex and multifaceted, so join us in unraveling some of the complexities of narcissism and autism. *DISCLAIMER: Due to the limited time available in a podcast episode, we were only able to scratch the surface of the many nuances and conversations surrounding these complex diagnoses. We also want to emphasize that there are a lot of people with narcissistic personality disorder who are doing the work to get insight into it, so we don't have the intention of putting down anyone who has received this diagnosis. This is only a glimpse into the topic, so we encourage your questions and comments and will try to address them when we are able to do so or in a future podcast episode. You can reach out to divergentconversations@gmail.com. Transcript DR. MEGAN NEFF: So, Patrick, earlier this week, you sent me a screenshot of a bunch of DMs asking that we do an episode on narcissism versus autism. And when I saw those DMs, I had a mixed reaction, both like, "Yes, I know we need to go there. And B, like, I don't want to go there." But I know we need to because this has also been the biggest request I've gotten for a Venn diagram, which I haven't actually created. And I'll unpack that later. So, people are really interested in this topic of what is narcissistic personality disorder? What is autism? So, that's what we're going to talk about today. PATRICK CASALE: Yep. And I could actually experience your experience through your responses via text message window when you sent them. DR. MEGAN NEFF: Oh, what was that like for you? PATRICK CASALE: It just felt like I was attuned to how you were feeling. And I also just kind of was thinking about how often it gets mentioned in the same sentence, especially, on social media. And I know that just you've been using the term narcissism, narcissistic personality, etc. Right now is, like, a pretty hot topic. DR. MEGAN NEFF: I think that's why it feels like a really hard conversation to know how to enter because there's so much misinformation on so many things. And I want to, like, provide so many disclosures, or caveats, or footnotes because everything we're talking about like co-occurring personality disorder and autism, narcissism, theory of mind, and all the things we'll get into, like, everyone of those deserves a really hefty footnote. PATRICK CASALE: Yes, and I know that we're also doing this as kind of like an introduction to the topic. So, we're going to use that as a blanket overarching statement right now, is that this is a 30-minute conversation, this is a hot topic, this is going to potentially create some controversy. We know this, and we want to do this as intentionally as we can, and we will also come back and do more episodes surrounding same topic. Is that fair to say? DR. MEGAN NEFF: That is so fair to say, thank you for saying that. Yeah, yeah. First, let's spin out like a little bit on narcissism. I'm curious, your thoughts. I think this is a tricky diagnosis. Okay, first, though, one thing I'm seeing is an increase of people quickly calling other people narcissists. And narcissistic abuse is a very real thing. And I've worked with several people who have been on the other end of that and it is terrible. And I am also seeing this cultural tendency where people are kind of knee-jerk reaction, "Oh, that's a narcissist." Or, "That's narcissistic abuse." Where I think that is, you know, we talked about misinformation a while back, I think around narcissism and how quickly people are calling other people in their lives narcissist, I would say that's an area where I'm seeing a lot of misinformation. First of all, let me just check in, do you agree with that assessment? Do you disagree? PATRICK CASALE: Yeah, I agree 100%. And this comment might get some slack, too. But slack, that's a whole word, slack. I don't know. People may not be happy with this comment as well. But I think that this is like social media driven in a lot of ways as well because it's, again, we talked about like, TikTok diagnoses, how you and I are both on board with self-diagnosis, we both believe that it is a valid tool. And I also think that there are a lot of content creators right now who are, specifically, talking about narcissistic abuse, narcissists, in general. And you're right, narcissistic abuse is a completely valid experience. And it's a very traumatic one for the person who's on the other side of it. However… not everyone who exhibits one tendency, or trait, or characteristic is then therefore a narcissist. DR. MEGAN NEFF: Right, right. PATRICK CASALE: And, I think that's the murky stuff, right? DR. MEGAN NEFF: Yes, absolutely. And I mean, you know, Pew Research has looked at this. This was before the pandemic and before everything that's happened socioeconomically in the last, you know, four or five years, they showed that we're living in the most polarized state in the US ideologically than ever before. I cannot imagine what the numbers are now. What happens when we are in a polarized culture is as humans, we just tend to become more reactionary. And I think part of what I see happening on a cultural level is we are losing our tolerance to disagree with people, we're losing our tolerance to be uncomfortable by someone else's view. Like, if we're in disagreement, then you are X to me. And there's this tendency then to project onto the person we disagree with, like, character traits, and or diagnoses like narcissism, or the other… I think the two personality disorders that are kind of, I would say, misused in this way are borderline personality disorder and narcissism. PATRICK CASALE: I agree 100%. And I know we could go down that road and do an entire, like, hour-long episode about the projection from a clinical standpoint as well. And I know we want to keep it- DR. MEGAN NEFF: [CROSSTALK 00:06:15] the same topic. PATRICK CASALE: This is a tread lightly conversation, I just think that somebody- DR. MEGAN NEFF: It is, it is. PATRICK CASALE: [CROSSTALK 00:06:21]. DR. MEGAN NEFF: Yeah, are you nervously sweating right now like me? PATRICK CASALE: I can, like, withstand commentary for the most part. So, without it really [CROSSTALK 00:06:36]- DR. MEGAN NEFF: Interesting. For me, it's like, I guess the commentary, but for me, it's also about the saying something, you know, I am more ADHD in my language use than autistic, so often I'd say things like, that's not what I meant. And then it's the anxiety of living with that comment being out there out of context and wishing I would have said it differently, yeah. But I think you're kind of writing this in. Okay. So, narcissism and autism. This question comes up a lot of either people who have perhaps been diagnosed with narcissistic personality disorder, but they think they're autistic, or I think a lot of the comments you get, and also comments I get are from partners of, like, potentially autistic… often what I see, I'm curious what you see, it's often heteronormative partnerships and where it's the woman reaching out about her husband. Is that what you also have mostly? PATRICK CASALE: That is what I see for the most part. And those are the DMs that we get, "Please help me help my husband. Please help me better understand him. Please explain the differences between the two because I think that my husband's autistic, but he's very narcissistic." Or something to that degree. And I've heard that the two go hand in hand, is what I also hear. DR. MEGAN NEFF: Yeah, yeah. So, I actually have a draft of a Venn diagram. I didn't publish it because I didn't have the psychological strength. Well, actually, it's not just about that, I think to make a Venn diagram, I'd have to go revert to a lot of the unfortunate stereotypes about autism. And so I have complex feelings around that because I'd be comparing like theory of mind to narcissistic, like, kind of, I can't remember the clinical term off the top of my head, but that tendency to, it's all about me tendency in narcissism, to kind of live in your own world. So, that's the other reason I haven't made a Venn diagram is it falls back on these very stereotypical pathological ways of talking about autism to compare the traits. And I think that's why I've steered clear of the conversation. However, like, these autistic things are stereotypes for a reason. And to me, that's, I think, where the conversation gets anxiety-inducing and gets complicated, of there are autistic people out there who struggle with theory of mind, and just to define theory of mind. It's that tendency of like, seeing the world through someone else's lens. It's been reconceptualized by Milton and the double empathy problem of autistic people tend to do better with theory of mind with other autistic people, allistic people do better with it with other allistic people. But I think even…. I don't know how to say this, Patrick, I don't know how to say this. I really like the double empathy conceptualization. That's my experience of theory of mind. It's interesting, I've definitely seen and worked with autistic people where that classic definition of theory of mind is a struggle of like perceiving the world as someone else's do. I think that is more associated with alexithymia than autism. So, when someone is autistic and has severe alexithymia, they tend to be very external-oriented thinkers versus internal-oriented thinkers. Meaning, rather than think about like their internal experience, they're often thinking about external factors. Someone who doesn't think a lot about their own internal experience, probably isn't going to think a whole lot about someone else's internal experience. Okay, I'm going to stop there for a second because I feel like that was a bit. PATRICK CASALE: No, I think that's a great conceptualization. And I think you're right. So, if you're not thinking of your own internal experience, it's really hard to place yourself into the position of someone else and to think about their own internal experience, right? And if we're thinking about alexithymia, we've done an episode on it, and that episode, obviously, doesn't do the topic justice because, it's, again, just an hour, but the reality of like, if I'm struggling on my day-to-day with my own internal experience, and really being able to connect to it, does that then therefore make me narcissistic? And the answer is, no, absolutely no. Like, NO! DR. MEGAN NEFF: But it can feel that way to the partner, the partner, particularly. So, there's this really unfortunate term called Cassandra Syndrome. It's very pathological, it's essentially the experience, and again, typically, heteronormative partnership they're talking about here, where a woman, I think, originally, it's like a woman goes to therapy, and she thinks there's so much wrong with her. And what gets unpacked because partly, her partner's telling her like you're too emotionally needy, and all these things, and then we get to unpack that a lot of these women were married to undiagnosed autistic men. So, again, it's a really pathologizing way of thinking about it. But also, like, there are a lot of people whose experience is one of significant confusion when they're married to an undiagnosed autistic person. And I would say, someone who's undiagnosed and not curious, right? Like, if you're autistic, and you're curious, you're curious about your experience, you're curious about your partner's experience, that's a whole different story. Typically, the people who are contacting me, probably the people contacting you, their partner is not curious. Again, that external-oriented thinking is probably really high. But there's also a lot of defensiveness around even considering something like autism. And so there's not space. I mean, we've talked about the metaphor of constriction versus openness. There's no openness in the dyad to talk about what's happening. So, I do see it in those experiences, where for the partner who's… and sometimes if, you know, like the partner is autistic as well. ike it's an autistic/autistic partnership, but this is still happening, it's like the only way to exist with that person is to live in their subjectivity. And what I mean by that is to live within the like, framework, and Lthe rules, and the world of the partner who is not as curious and struggles to have insight into their internal experience. And that can be a really hard way to have a relationship. It's also very similar to narcissism, the only world that exists tends to be within the narcissist's subjectivity. And again, someone with NPD, can get treatment and like, I don't want to say that this is like, and a person with narcissism who has good insight could also work on this. But classically speaking, is to exist in the other person's subjectivity. The reasons are totally different. But the experience could be felt very similarly for the partner. Could that make sense? PATRICK CASALE: It makes perfect sense. And I think that's an important part. That's probably one of the most important things to hone in on, right? How is what exactly what you just said, the experience can be similar, but the intention or the reason is different, right? Like, so that's something to really think about, is the experiences can look almost like mirroring one another if you're coming at it from a certain perspective, but the reality is there's foundationally different reasons for what's happening in the experience. And I think that's really important. And I think that gets overlooked, probably, the most often. DR. MEGAN NEFF: Yeah, absolutely, absolutely. Yeah, yeah. PATRICK CASALE: So, let's talk about other things then because you said, "I have the Venn diagram, created it, but publishing it would take too much psychological energy and labor." Most likely because of the responses I imagine in the comments and you would have to be very available to it. DR. MEGAN NEFF: Yeah. Well, those Venn diagrams go viral, and I don't want to be promoting stereotypes about autism, so I don't know how to make it. And, yeah, I don't know how to make it in a way that, like, I guess I could do a star and an asterisks next to each trait. But I really think the reasons they look similar is the case of autism with severe alexithymia. So, that's a hard thing to nuance in a graphic. Maybe someday I'll figure out how to do that. Because the other one that comes up is a lack of empathy, right? Like, that's one of the reasons someone seems narcissistic. So, again, lack of empathy, there's been brain studies on this. They looked at brain scans, there's a kind of a, I won't get into the design of the study, but essentially, they did brain scans. And then when they controlled for alexithymia, so controlled for means when they separated the autistic people with alexithymia from the autistic people without alexithymia, they did find that autistic people with alexithymia had lower activity in the empathy regions when a loved one was experiencing pain. For autistic people without alexithymia, it was the same as allistic people. So, it's alexithymia, not autism that can impact empathy regions in the brain. So, where was I going? Empathy. The other reason besides alexithymia an autistic partner might not be as empathetic as an allisic partner might want is because of communication, right? Like, I'm not a mind reader, I rely on explicit communication. If my partner's upset with something but hasn't told me why? I mean, I'm pretty good at picking up patterns and cues. And I'll usually ask, but I'm trained to do that. So, it also can be a communication difference of, especially, if one partner is really indirect in their communication, but they're expecting their autistic partner to be able to pick up on indirect communication, that could show up as my partner has no empathy, when really, that's a communication issue. PATRICK CASALE: And I imagine that right there is probably the crux of so much of what we're talking about, is these miscommunication styles in so many ways because in partnerships, in general, whether it's allistic/autistic, autistic/autistic, the communication that's being missed and not explicitly being asked for, or communicated, or being able to say, this is what I need to be able to communicate in terms of our relationship or process, what you're saying. I mean, if you're not a trained clinician, these are skills that people often do not have, or possess, or are able to articulate. DR. MEGAN NEFF: Yeah, yeah, exactly. So, another communication one that can look like narcissism is how we connect. So, for example, a lot of autistic people, we connect by sharing stories. So, Patrick, if you were like, this stressful thing happened to me, blah, blah, blah. I might be like, "Oh, my gosh, one time this thing happened to me." And like, that's a natural way for us to connect. For someone outside of our culture, it looks like, "Oh, Megan Anna just made it about her." Versus what I'm really communicating is like, oh, I can understand that. I think I can understand the emotion you're experiencing because I had something similar. Now, what I've learned to do is the dance back. This is where like, Patrick, if you were sharing something, I maybe share a story about a similar experience, what I've learned to do is an explicitly bring it back to you, be like, "You know, so I kind of felt like this when that happened to me, do you feel something similar?" Because I've learned adding that explicit, kind of, dance back is communicating. I'm sharing this because but I'm wanting to center your experience. I'm not trying to center it. But that's kind of a sophisticated thing to learn. I think I learned that through masking, through training. There's a lot of autistic people where they don't do that dance back. So, the people in their lives think whenever I share anything, they just end up making it about them. PATRICK CASALE: Right? And in reality, what you're trying to convey is like, I have experienced something similar and I do, in fact, have empathy for you. And this is my way of sharing that I can connect with your experience. And I think, again, so you just mentioned it again, but the training, and the intentionality, and the curiosity here are, you know, we're very privileged to be a percentage of human beings who not only have higher education, but are trained clinicians, and are trained in behavior, and are trained in tracking, and attunement, and inferring. And I think that for a lot of people listening to this episode who are not trained, right, clinicians, it's so easy to miss the mark and then to take it really personally. Whether it be via communication, or, you know, if you feel like your partner, or your friend, or your family member's always centering their experiences, or they don't have empathy for your problem, or your struggle, that's going to feel pretty crappy regardless of the reason. And it's really easy to put language to it nowadays and say, "Well, it's because they don't have empathy. They don't care. They're narcissistic. They don't care about my experience at all." And that perfectly well could not be the case. DR. MEGAN NEFF: Right, right. And it also might be the case. PATRICK CASALE: Right [CROSSTALK 00:21:11] this conversation is so complicated because I think you could say that for almost everything we kind of denote, right? DR. MEGAN NEFF: Yeah, yeah. I mean, like, not all autistic people are awesome humans, just in the sense that, like, not all humans are awesome humans. Maybe there is an autistic person who does, again, because they're external oriented thinkers and all these things, they do, like, struggle to think about… worries in partners a lot because I think a lot of our request comes from partners, their partner's experience. And maybe like, we haven't even talked about characters and values. Like, maybe they are lower on the empathy scale for other reasons or the compassion scale, or maybe they're narcissistic, right? Like these things can co-occur. That's another misinformation thing I'm seeing a lot is where people are saying you can't be both autistic and have a personality disorder. I think someone put that on an infographic. And that's just not true. Before you diagnose personality disorder, you have to rule out what are considered the neurodevelopmental conditions or any other reason that would, like, better explain the symptoms you're seeing. So, in the case of someone who's autistic, if they are having symptoms beyond what autism and I would say, beyond what traumatized autism could explain, then you might also diagnose the personality disorder. And if we conceptualize personality disorders as kind of broadly speaking, a vulnerable neurology paired with an invalidating environment, of course, we're going to be more likely to develop personality disorders. And that's also well documented that we do have higher rates of personality disorder. And I don't think that's all misdiagnosis. I think it's because we have a very vulnerable neurology and we're miss attuned to for much of our life. And so it makes sense that we develop these at higher rates. So, an autistic person could also have narcissistic personality disorder. PATRICK CASALE: One, I love the way you just framed that vulnerable neurology-invalidating environment. So, you said, I'm getting my words right. DR. MEGAN NEFF: Yep, yep. PATRICK CASALE: That's so well said, to conceptualize and to think about it that way. And also this conversation is clear as mud for most people listening, right? Because it's like, this could be true, this could be true, this could not be true. And that's really what we are trying to kind of articulate to our listeners is like, this is a really complicated conversation and the labels that get thrown around are really damaging. And it can be really, really painful for people when they are used because someone has been hurt or because it feels like this is what society says about this person if they exemplify A, B, C, D characteristics. DR. MEGAN NEFF: Yeah, yeah, absolutely. Is it okay if I shift context a little bit because there's another context I've gotten this question, which is work. PATRICK CASALE: Yeah. DR. MEGAN NEFF: So, this was the first time that I thought, "Oh, maybe I should make a Venn diagram." It was someone contacting me that was saying, "Can you please make a Venn diagram?" Because, like, I think they were maybe fired from their job and being accused of being narcissistic when really what was happening was autistic communication, right? And again, like things like hierarchy, that if I'm coming into a meeting, I actually had this experience, I had this experience in my internship with my supervisor. I think he didn't know what to do with me because I didn't perceive the hierarchy in the way I think he thought I should. And he in a review called me like overconfident or something. That sort of, like if I have a good idea in a meeting, even if I'm not high in the hierarchy, I'm going to share it because it's a good idea. And a lot of autistic people are like that. But that could look like subverting hierarchy, and the narcissistic, and other, like communication traits can look like that in the workplace. And then that can lead to workplace discrimination. So, that's another context that this can show up. And we're understanding, like, no, that's autistic communication, that's not narcissism, would actually be really helpful. PATRICK CASALE: That is really helpful. And I imagine a lot of you who are listening have experienced a workplace where maybe that has been a situation, or you found yourself in a relationship where that was the perception of you because of how you communicate, get your ideas across. I know, I probably have done that a million times in, like, meetings where it was just all fluff and stupid bullshit. And I probably was just like, "Hey, what about this idea? Like, what about this thing? Can we just implement this?" I know, I've actually said that out loud. Like, "Can we just be done with this meeting and like, implement this thing?" Because we're sitting there for two hours going around in circles about nothing. And that wasn't really much more about energy preservation at that time. And if you want me to be here nine to 10 hours a day, I need to be able to work and function to the best of my abilities. And so I know I've certainly communicated in ways where I'm like, this is just what I'm experiencing in the moment. DR. MEGAN NEFF: Yeah. And look at you, right? Like, you're a tall white man, who if you're like coming in with that energy, I could be like, "Oh, my gosh, Patrick's such a like, so full of himself." Right? Like, that's an easy narrative to adopt if you don't know you and understand you. PATRICK CASALE: Absolutely. I've heard that narrative from several of my close friends right now who used to be in my supervision group, where we'd be like, you know, sharing feelings, sharing ideas, and then I'm like, "Can we just get to the point?" [CROSSTALK 00:27:16]- DR. MEGAN NEFF: Okay, so dismissiveness. This is actually, sorry, I totally cut you off. PATRICK CASALE: No, it's okay. Dismissiveness, sorry, I just cut you off. DR. MEGAN NEFF: Okay, I'm dismissing you. No, but just like, I don't value emotions in the same way a lot of allistic people do. And so I do know I'm more prone to dismiss them because they seem illogical to me. Like, now that I understand the science in emotions, I actually care about them a little bit more. And someone in a relationship with a narcissist who's not in treatment doesn't have insight into the experience of, sorry, I shouldn't say with a narcissist. We use a lot with identity language, but I think, for that, I think with narcissistic personality disorder, I feel like it's a more empathetic way of communicating. Okay, rabbit trail. There's going to be a lot of invalidation and dismissal in a relationship like that. And I think, again, especially, for an autistic person with alexithymia, as soon as emotions come up, if that's really important for the other person, they could feel deeply dismissed. Like, I know I've dismissed people when I've… especially, because I can get kind of irritated of like, no, just look at this logically. Which I now realize that's really dismissive, that's not effective communication. If you're trying to move toward resolution, you've got to, like, validate the feelings, and then maybe that creates capacity for logic. Whereas I would come at it the flip, I want to start with logic to understand the emotions. PATRICK CASALE: Right. Yeah, but I think the big takeaway, right? Is like, whether we both have just kind of shared examples is probably how we have dismissed people in our circles professionally, or colleagues, etc., not intentionally, just because it was like we need to cut through, we need to use the logic, we need to get to the point, we need to move on with whatever the case may be, whatever situation we're in. But we both probably also felt remorse and regret for dismissing that person's idea or thought, or statement. And that I think shows that's where you start to build this sense of self too, of like, okay, I care very deeply about this relationship, that's my fuckup. Like, I will try harder to try to give and take a little bit in terms of communication when we're in these environments. DR. MEGAN NEFF: I think you might be a better human than me because I don't all… like I mean, yeah, when I care about the person and when it's a genuine like I've missed them, like, I deeply care. So, like, my core family and my clients, like, that's really important. But when I'm in a conversation and I feel like the other person is not being logical, I actually don't like walk away from that conversation and be like, "Oh my gosh, I feel so bad." I'm like, "Damn emotions." Okay, not always. So, I just want to like humanize, I don't always walk away from those encounters. Sometimes I'm, like, irritated at the other person. I'm like, "Why doesn't your brain work more like mine?" And I'll talk myself through that, right? Like, to not stay that kind of, that sounds really bitter, but I want to be honest about the fact that I have those moments, that is part of my experience. PATRICK CASALE: Yeah, absolutely. I certainly don't walk away from every one of those situations, like deeply remorseful, or full of, like, resentment towards myself, or self-deprecating because I do think sometimes, and maybe I'm wrong, is when you say like, "Damn it, why doesn't your brain work like mine?" It's like, because of how hard we often have to work to feel seen and validated, or understood. And for me, that's where that like, "Damn it, why doesn't your brain work like mine?" That moment is where that often comes up is when I feel misunderstood. Like, where I feel missed, where I feel unseen, in terms of like, in any capacity, honestly. DR. MEGAN NEFF: It's this really like, intense moment I experience where I have this feeling and I see this a lot with folks of like, if I could just inject my logic into your brain, you could see it the way I see it, then this whole misunderstanding would be cleared up. So, then I can kind of dig into like, I want you to see it how I see it not because… I'm not in a like power dynamic of like, I need you to see the world through my… but like, I think I'm seeing something. And usually, it's like a relational dynamic, where I'm like, I see what's happening here. Like, your stuff over there is kicking in with my stuff over here. And if we can put it in a conceptual framework, we cannot understand it. And so I'm trying really hard to inject that understanding into the other person. I'm even realizing the word inject, like, that's very violent sounding, right? But I have those. It's almost like a panic moment of like, you just need to see what I see because then we can move clearly through it. Like, typically, I have enough regulation skill that I can kind of walk myself through that, but I could see how that panic moment could come across as really dominating. Especially, if someone doesn't have insight into, like, what's happening for them in that moment. PATRICK CASALE: Yeah, absolutely. I agree 100%. I think this happens. I'm diverging just a little bit. But I think those panic moments for me happen most often when I'm in like a medical provider's office and like, they just dismiss what I'm saying. And I get so like, immediately frustrated, and I feel so invalidated, and dismissed, and I feel unseen. But then I shut down most of the time. I don't often like, I'm just like [CROSSTALK 00:33:12]- DR. MEGAN NEFF: Me too. PATRICK CASALE: And it's so much shame-inducing in a way of like, I just can't feel understood here. Like, that's really what happens to me. DR. MEGAN NEFF: Yeah, I would say that's what happens to me 90% of the time, and then those few times where I have tried to, like, get my perspective, like, accessible into someone else's head, those don't go well. And then I tend to shut down even more deep in that relationship. So, shutting down just kind of often feels like the better option. I just got a wave of sadness, Patrick. We both shut down when we're feeling dismissed. So, to put it in like nervous system framework, we kind of go freeze mode, maybe fawn mode. For autistic people, they go fight mode. That could look really narcissistic. PATRICK CASALE: Yeah. My brain has a couple of thoughts right now as I'm experiencing this heaviness. One, we should probably do an episode on meltdowns and shutdowns. DR. MEGAN NEFF: Mm-hmm (affirmative). PATRICK CASALE: Two, yeah, like polar ends of the spectrum in terms of nervous system reaction, in terms of fight mode versus fawn or freeze mode. And yeah we could certainly look very narcissistic in that way, if that's the reaction in those modes. DR. MEGAN NEFF: I think what I don't want to say, and this is the balance I'm wanting to walk, I don't want to say that autistic people can't be harmful in our relationships. Of course, we can, we're human. I also don't want to say that autistic people are narcissistic, or that every time you see someone with low empathy, you're like, "Oh, they're autistic." So, walking that line of there's plenty of indecent or not indecent, that feels…. plenty of like, autistic people out there who are not compassionate partners. There's plenty of allistic people out there who are not compassionate partners. There's a lot more going on in our neurology. Our neurology certainly complicates things. Yeah, it's a delicate balancing act to honor both of these, all of the really negative stereotypes around autism. We're also being honest with like, we're not all high empathy and we're not all high empathy all the time. PATRICK CASALE: Yeah, I can't add anything to that other than just saying I thinks that's completely true. And I think that's also, maybe some of the heaviness that we're both experiencing right now is just the stereotypes that a lot of autistic people face and experience, coupled with the fact that people are also people. And although we're more prone to discrimination, and struggle, and a lot of complicated scenarios, that doesn't mean every autistic person [INDISCERNIBLE 00:37:23] character traits, like, that's just the reality, it can't be. DR. MEGAN NEFF: Right, right. And I will say, I mean, to bring it back to intersectionality, like, I think this presentation of autism that often gets talked about, and then the stereotypes get created about is often when the autism is intersecting with a lot of privileged identities, which makes sense to me. I'm not sure I can articulate why that makes sense to me. I have thoughts, but I also feel like that's an important part of the conversation, is it really typically is Cishet white men that this conversation revolves around. Not always, but often. It's you, Patrick. PATRICK CASALE: Thinking of all the Taylor Swift memes of the problem is me right now. DR. MEGAN NEFF: Except you don't fall into that stereotype. PATRICK CASALE: No, but just like you- DR. MEGAN NEFF: You're curious, you're curious and you- PATRICK CASALE: Right. DR. MEGAN NEFF: Yeah. PATRICK CASALE: And I think that's what we've talked about on almost every episode is like openness and curiosity, right? Like, versus constriction, and just really being curious about an experience. But yeah, I mean, privilege does absolutely shift and shape the lens that we see the world through, too. So… DR. MEGAN NEFF: And I don't think you have to be as curious about the world, about your experience, about other people's experiences when you have a lot of privilege. You got to walk into a room, and like, it takes privilege to not be thinking about what's happening in that room, like, relationally, in other people's minds. You can't do that if you're not safe. And privilege and safety walk hand in hand. So, actually, okay, this is just coming to me in a moment, but I'm curious about the connection between, like, privilege, curiosity, and, like curiosity of self and curiosity of other. PATRICK CASALE: Yeah, I mean, if you can walk into the room, and identify, and look the way that I do, you don't really have to think about how the world is impacting everybody else. Because it's not impacting you in the same way, for the most part. DR. MEGAN NEFF: Yeah, yeah, that scanner doesn't have to be on for your safety. PATRICK CASALE: No, we could do a whole episode on that too. Heavy conversations create new ideas, so… DR. MEGAN NEFF: That feels like a tagline, heavy conversations create new ideas- PATRICK CASALE: [CROSSTALK 00:40:12]. We're going to start making T-shirts and all sorts of swag for Divergent Conversations. DR. MEGAN NEFF: [CROSSTALK 00:40:19]. PATRICK CASALE: So, another idea, that's actually not a bad idea. Okay, my brain is diverging all over the place, which is kind of telling me I don't have much left to give in this conversation. I don't know how you're feeling right now. DR. MEGAN NEFF: Yeah, no, I think this is a good time to wrap up. I would love to go dig into the research a little bit more. I'd be curious about people's comments on this episode. And then maybe we could do a follow up episode because yeah, the conversation is really complicated. But I think this is a good starter episode on this topic. PATRICK CASALE: Yeah, I agree. I think we try to walk along as best we can. And I guess, when it comes out, depending on how it's reacted to, but I don't feel like one way or another right now, which is usually a good indication that we did our best. What I will say to everyone listening, is we want your comments and we want your questions. And you can email us your questions, you can email us topics at divergentconversationspodcast@gmail.com. We aren't really going to check Instagram messages as much just because Megan and I both have too many of those messages coming in in different ways in our lives, and it's just not possible. But if you do have comments, if you do have questions, please send them to us. I mean, we want to address what we can when we feel like we are able to do so. And this is a starter topic. So, we try to use lots of disclaimers, and asterisks, and setting the stage, but that can get missed sometimes, too. So [CROSSTALK 00:42:02]- DR. MEGAN NEFF: I have one more asterisk before you do [INDISCERNIBLE 00:42:05]. PATRICK CASALE: Absolutely, absolutely. DR. MEGAN NEFF: There's also a lot of people out there who do have NPD, who, like, you're doing the work to get insight into it. And so I also realize that this conversation when we're like, "Don't compare us to people with NPD." Like, that can be really pathologizing to people who have NPD and that's another reason why I feel so much complexity around this conversation. So, I do want to add that asterisk out there before we close out. PATRICK CASALE: So, we're going to have all these asterisks and disclaimers in the show notes, as well as all of the information that we just talked about. So, again, just to start our conversation, and we will revisit it in the future. But we get so many questions and DMs about the topic that it felt important to address sooner than later because we want you all to know that we listen to what you have to say and we know that the conversation is out there to be had. So, just want to name that as well. So, for everyone listening to the Divergent Conversations Podcast, new episodes are out every single Friday on all major platforms and YouTube. You can like, download, subscribe, and share. We will see you next week.
Pregnancy loss is traumatic and the grief process that follows is complex. And when you are Autistic, the way you express grief and loss might not meet the expectations of society, which can result in feeling ashamed and isolated. In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, speak with Dr. Kiley Hanish, a neurodivergent occupational therapist specializing in mental health during the perinatal period, about autistic grief and loss while focusing on pregnancy loss. Both Dr. Neff and Kiley, who are both Autistic, experienced pregnancy loss and they talk about their experiences personally, within the medical system, going through pregnancy again after experiencing loss, having to parent their children after pregnancy loss, then sensory overwhelm that comes with pregnancy and parenting, and the ongoing process of grieving. Top 3 reasons to listen to the entire episode: Hear about the profound grief associated not only with losing a child but also with the loss of one's identity when becoming a parent. Understand some of the many ways that grief can manifest, and learn how to incorporate rituals and practices into the grieving process to honor your loss that is tailored toward the needs of autistic individuals. Identify the ways that the healthcare system can improve the responses to individuals experiencing pregnancy loss to help create safety and reduce trauma in difficult times. When experiencing loss, it's not realistic to just “get over” the grief and move on. There are many complex emotions and often misunderstandings about what is the right way to deal with grief, especially when autism is brought into the equation. If you are experiencing this loss, you're not alone and your experience is valid regardless of whether other people say you are “doing it right.” More about Dr. Kiley Hanish: Dr. Kiley Hanish is a neurodivergent occupational therapist specializing in mental health during the perinatal period, which includes pregnancy, postpartum, and perinatal loss. After suffering the stillbirth and loss of her first child Norbert, Kiley co-created the Emmy-nominated film Return To Zero to break the silence and stigma around pregnancy and infant loss for parents around the world. The film's success and critical acclaim led to her non-profit organization Return to Zero: HOPE. This organization provides inclusive and compassionate education and support for bereaved families after pregnancy and infant loss. In addition, they provide training and support for health providers in order to foster more confidence when working with these families. Return to Zero: HOPE Website: https://rtzhope.org Kiley's Instagram and Facebook: @rtzhope Additional Resources Mentioned Worden's Four Tasks Of Grieving: https://whatsyourgrief.com/wordens-four-tasks-of-mourning Transcript DR. MEGAN NEFF: So, Patrick, I don't know if you know this, but October is a busy Awareness Month, especially, for the topics we talk about here on this podcast. It is ADHD Awareness Month, it's OCD Awareness Month, it's Depression Awareness Month, Dyslexia Awareness Month, and it's Pregnancy and Infant Loss Awareness Month, which is what we're going to be diving into today. So, I do want to just offer kind of a gentle disclaimer, if you are in the process of trying to get pregnant or recently experienced a pregnancy loss, do take care of yourself while listening to this episode because we will be talking about pregnancy loss. So, first, I just streamlined through the intro. Patrick, anything to add to the intro before I introduce our guest? PATRICK CASALE: I have nothing to add. I appreciate you laying the groundwork, so that's where [CROSSTALK 00:01:00]- DR. MEGAN NEFF: …role reversal, there's a role reversal happening here. PATRICK CASALE: [INDISCERNIBLE 00:01:05]. I told Megan and Kiley before we got started, been up since 3:00 AM. So, I'll be here in existence, but maybe also not… DR. MEGAN NEFF: Appreciate how you name how you can come into this space however you are. Yes, so we have Kiley on today, who is, do you go by doctor? Because you're a occupational therapist, right? KILEY HANISH: Yeah. DR. MEGAN NEFF: How do you introduce yourself? KILEY HANISH: Well, my students call me Dr. Hanish, but Kiley is perfectly fine. DR. MEGAN NEFF: Okay. So, Dr. Hanish or Kiley is an occupational therapist, autistic ADHDer, newly diagnosed, you mentioned. And you started a nonprofit around pregnancy loss I think to help families, but also to help educate the medical field around how they can be walking through families and people, walking through that process better. Do I have that right? KILEY HANISH: Yes, yeah. So, we're supporting families who have experienced different types of losses. And then there's a lot of trauma that can be done, like with health care providers, and especially, in the hospital, and so they don't receive training in their formal education. And so how can we kind of share information to help them be more confident working with bereaved families, and then therefore reducing trauma and other negative mental health outcomes. DR. MEGAN NEFF: I love that so much. I think I've mentioned it on here a few times, but I used to work as a therapist in an OB-GYN clinic. And this was an area where it was evident there was just so much growth for the medical community in how this process is handled. And yeah, I love your lens of reducing trauma. So, yeah, I'm backing up bird eye view a little bit, we connected because you emailed me. We were asking folks for like topic ideas and you emailed me with four or five wonderful ideas, but one that caught my eye was autistic grief. And we've heard other followers ask for us to cover autistic grief as well. I think it is a really important and complex topic. So, we're going to be looking at that today, we're going to anchor in the experience of pregnancy loss. Oh, partly you reached out because you heard me mention that I had had two pregnancy losses on the podcast, which you have a good ear because I think it was a really passing comment. But I also think once you've lived through pregnancy loss, you hear it when people talk about it. Okay, that was a long-winded intro. To anchor our conversation today, we do have a broad framework we're going to follow. I'm going make it explicit because I think structure can be helpful. We're going to talk through different phases of the pregnancy loss experience. And I think this is really important to think through it in phases in the sense that this is actually something we know helps people walk through the grief process is when they can story tell and narrate their experiences. So, we'll be talking about the acute phase of coming to know the processing around that, the postpartum experience, and then grieving itself. And when we get to that fourth part, we're going to globalize it to talk more broadly about autistic grief. Does that sound like I have that right Kiley of what we talked earlier? KILEY HANISH: Yeah. DR. MEGAN NEFF: Okay. KILEY HANISH: And I think just so for other people who are listening that have not experienced pregnancy loss or maybe have but other types of loss, like loss, isn't only death, and that you can take what we're talking about and apply it to your own situation because it will be in some way relatable. It just may not be the exact same story. But I think there's a lot of lessons that can be just like, well, lessons learned, and then just like, exploring for yourself. Like, "Well, how did I react? And what, you know, my interactions with…?" I don't know, it's complicated for sure. DR. MEGAN NEFF: Yeah. So, Kiley, can we go back to starting kind of at the beginning for you of your experience around pregnancy loss, but then also how you got interested in this topic of autistic grief, and then supporting families, and people through this process? KILEY HANISH: Yeah, so yeah, I'll first start just by sharing, like setting the stage of like, my situation. So, 2005 I was pregnant with my first child. You know, everything was fine, you know, up until when I was 35 weeks pregnant, which is like five weeks before due date. And I started bleeding. And because it's my first child, like, you don't know what's normal, and what's not normal. And so my midwife was like, "Oh, you probably just lost your mucus plug." And so I didn't think anything about it. I had no awareness of baby movement because no one told me to pay attention to it. And there's this, like, myth that babies slow down when they're, you know, getting bigger because there's less room, which is not true. But you know, there was no talk about paying attention to baby moving or anything. So, I wasn't even aware of baby movement. But thinking back I'm like, "Yeah, I didn't really feel him move." So, when I went to the doctor the next day, they couldn't find a heartbeat, they did an ultrasound. And at that point, told me that he had passed away. And I went into immediate shock. I was by myself. I didn't know what to do, I didn't know what that meant. And it was just like, I feel like I really left my body. And so, like, I said to the provider, I said, "Well, what am I supposed to do?" Like, I wanted to understand, like, okay, my baby is there but then what happens, you know? And I know, I've mentioned this to you before, but then, you know, she says, "Well, maybe you could cry." And I was just like, "No, that's not what I'm asking." I'm like, "I'm asking for you to tell me what is going to happen?" Because when you're that pregnant, you have to deliver your baby. Unless there's, like, a threat to your life, they're not going to do a C-section. But I'm like, "How does the baby come out?" Like, I don't know. DR. MEGAN NEFF: Yeah. KILEY HANISH: So, there was… go ahead. DR. MEGAN NEFF: Maybe pause there just to, like, that feels really powerful of in that moment you needed to know what to expect to get back into your body, to get back to safety. And that probably really threw the medical provider off of like, where's the emotion? We should process the emotion and then talk about logistics, which I think would be a very allistic way of moving through grief. But for you, I almost wonder if you needed to know what to expect to have enough safety to experience your emotions. KILEY HANISH: Yeah, I mean, it's like the [INDISCERNIBLE 00:10:06] right? Like, I'm just learning about myself. Like, with the autistic piece, the uncertainty brings so much more fear and anxiety in a situation that's already horrible. And from her, I got nothing. And I'm not going to go into details, but just like her obsessing about other things that were really not important, and then she sent me home. And I was already in labor, actually, which is really odd. DR. MEGAN NEFF: It is odd. KILEY HANISH: You know, and then even at the hospital the following day, very little telling me what was going to happen, what to expect, and then, also, like, once your baby is born, there are lots of things… this is going to sound creepy to some people, or strange, or whatever, but like, there's a lot of things you can do to make memories to parent your child that it seems strange to talk about, but it's like your only time with your baby. DR. MEGAN NEFF: It's really important, yeah. I actually went to a training on this about how important it is to touch your baby, be with your baby, take pictures with your baby. And from an attachment lens, just how important that is. I literally have shivers talking about it and how rarely, parents are given that opportunity unless the medical system really understands how important that is. KILEY HANISH: Yeah, and so it's just like, what I really needed was a guide. I mean, I needed the doctor, or the nurses, or social someone to be a guide. It's like, you haven't been through this, but here's what's going to happen, and here are things that you can choose to do if you want to do that could be helpful to you. And I didn't get any of that. And so, like, the trauma in the hospital was so horrible. And then just, also, like, when you're in that state of shock, and I think this is anyone, it's like, then they took my baby out of the room, they put him in a box in front of me, like to take to the morgue. But then also you're just like, I can't even talk. Like, I don't even know what to say. And it's just like trauma upon trauma, was really, really hard for me. So, I think that, like, there was just too much without any guidance, and I shut down for like six months. I don't remember very much from that six months following. So, that was kind of, I would say the, like, acute phase but it lingered. DR. MEGAN NEFF: Well, it lingered… I mean, going back to those post-birthing rituals, it lingered partly because you didn't get, I mean, I'm sure it lingered for many reasons, but you didn't get to say goodbye and like I feel so much heaviness hearing you talk through that of it was such an ambiguous grief in the sense that there wasn't a goodbye and there wasn't clarity around what was happening and I think for any human that's incredibly difficult and then through being autistic on top of that, it's just so much. KILEY HANISH: Yeah. So, do you want to share any of your experiences in terms of like finding out, like, that part? DR. MEGAN NEFF: Yeah, I do. Yeah because I think there's some similar patterns. I think I also, and this is probably for my own self that I'm saying this. You know, I know that whenever we're comparing grief, that's not like a helpful thought experiment. I think it also, for me, I do want to name that it feels like we're comparing apples and oranges in the sense that from my own experience and walking with a lot of people through this first-trimester miscarriage,e 35-week stillbirth are very different experiences. So, I want to name that. I did share some of that medical confusion. I've had two complicated first-trimester miscarriages, one in which, like my HCG kept going up, which is the hormone that says you're pregnant. So, there's about a three-week window where it's like, well, actually, maybe you're still pregnant. And I kept getting conflicting messages from nurses when I would call of like, "Well, your HCG is rising, but it's not doubling. Maybe they were twins, and you lost one, and another one's in there." So, there's like a three or four week, I was getting a lot of mixed information. And that was really hard for me of like, "Am I supposed to be grieving right now? Am I still pregnant?" So, just that. And that's actually more common than I think people realize there can sometimes be this roller coaster, especially, in early pregnancy of maybe I'm losing the pregnancy, maybe I'm not. And then my second pregnancy was a missed miscarriage, which means that a heartbeat never developed, but the miscarriage didn't organically happen. So, it wasn't identified till nine weeks. And then, similarly, I didn't know what to ask and I didn't know what to look for. And I was reading a lot of things from like, kind of natural childbirth and midwives, and I love the work of midwives. And at the same time, I think it's very much set on typical pregnancies, a lot of the advice. And as an autistic person, I got really attached to the right way of being pregnant and the right way of walking through a pregnancy loss. And this was my second pregnancy loss and we very much wanted to have another child. So, I was convinced I shouldn't do a DNC because it might cause scarring, which could impact future pregnancies. That lead to what I think at the end of it, I, essentially, was like in my first trimester hormones for 20 weeks because I started miscarrying at 12 weeks and then miscarried for eight weeks and should have sought medical advice, should have known what to ask for, but I didn't and I'm kind of has medical avoidance. So, I didn't actually get help until I started developing an infection. So, there was a lot of uncertainty around those times. I wasn't advocating for myself very well and I think, partly, because I was also very shut down. I responded by shutting down, similarly. I was confused by kind of the absence of emotions during that period. So, yeah, that was my experience. What happened when you went home from the hospital and when you made it through after those six months? You talked about six months of shutdown, what happened after that? KILEY HANISH: Well, like I felt somewhere a shift inside of me of, like, the wanting to engage in life again. And that was like a month of that maybe, or maybe even less, and then I found out I was pregnant with my daughter which I hadn't had a chance to grieve. And then, like, grief process… whatever, and then pregnancy after loss is just like anxiety- DR. MEGAN NEFF: So, anxiety. Oh, my gosh! KILEY HANISH: …on steroids. KILEY HANISH: It is anxiety on steroids, yeah. DR. MEGAN NEFF: It's crazy. KILEY HANISH: And so that was a whole nother thing. DR. MEGAN NEFF: And did that, again, I'm thinking about potential education, like, when I was in the medical setting, I did a lot of education of like, after pregnancy loss there can be a lot of anxiety, you might find yourself resistant to attach to the baby growing. KILEY HANISH: Yeah. DR. MEGAN NEFF: Like, did anyone walk you through that? KILEY HANISH: Yeah, which is why I created everything I created. I created the guide for the hospital. I mean, all because it's like, when I learned things like, well, people knew this, why didn't they tell me? You know, and it's like I feel like the OBs are dealing with the waist down. They don't want to touch the emotion piece. And if there's a problem, they don't know what to do. Nobody, like, unless you get fortunate to have a therapist who knows about this, really, it's like luck. No, there's nothing, you're just like going blindly into everything. And you feel like you're going crazy, you can't talk about how you're going crazy because other people are going to think you're crazy. DR. MEGAN NEFF: Well, and especially, when you start showing, and people start coming up to you. I mean, like outside of pregnancy loss, right? Like, I hated being pregnant. When people would come up to me and touch me, and like, be like, "Are you so excited." And then I'm expected to have this positive emotion, right? That was just hard for me, even with my first pregnancy before any pregnancy losses. But throw in there, like, I am so anxious that this baby will survive, and then strangers are coming up and like expecting you to be all teary. Did you have some of that experience? KILEY HANISH: Yeah. Well, I mean, for me, it was my first, also. So, like, when I was pregnant again, like, "Oh, is this your first?" And then the whole question was like, "Well, do I tell them about, well, I had a baby that died or do I not?" And most of the time, personally, I feel like my business is my business. And I don't need to tell other people my business, you know? But you feel like you're like, kind of, disrespecting your child. DR. MEGAN NEFF: Absolutely, absolutely. KILEY HANISH: You know? DR. MEGAN NEFF: And it's that small talk, right? It's small talk that is so painful. Like, there's so many questions we ask pregnant people I've since learned not to ask like, "Are you planning to have more? Is this your first?" Like, things that we think are small talk is not small talk. And that's for non-autistic people, too. KILEY HANISH: Yeah, yeah. DR. MEGAN NEFF: Let alone throw in the, like, we hate small talk component. KILEY HANISH: Yeah. I had a thought, but it went. Oh, no, I know what I was going to say, in the pregnancy after last piece, like, there was like, what you were starting to say is like, denial of the pregnancy, non-attachment, which is called emotional cushioning. So, you're like- DR. MEGAN NEFF: Oh, I like that term. KILEY HANISH: I found that word somewhere recently and I'm like, "Oh, I like the term." You know? And so, it's like, oh, there's an explanation of, like, fear of getting attached because maybe the baby will die. And like the thought is, well, if I'm not as attached, and the baby dies, it won't hurt as bad. Which is a joke, but it's your brain trying to protect itself. Yeah, and just like not, like, I didn't buy anything. I didn't want a shower. I just I was like, "No, we're no, we're not doing anything to prepare." Like, so I did nothing. DR. MEGAN NEFF: So, even setting like setting up a nursery or a lot of the things, you did none of that. KILEY HANISH: The second time no because I did it the first time. DR. MEGAN NEFF: Yeah, yeah. KILEY HANISH: And then I had to take it all down. So, then I was like, "No way." DR. MEGAN NEFF: Yeah, it's actually really logical. KILEY HANISH: Yeah. And then I will just throw in here, like, looking at our agenda because agenda is postpartum. So, I will say after you lose a baby, even though your baby's not living, you are still in postpartum. But I was in such shock and like, disorientation. It didn't really matter. But after my daughter was born, my second pregnancy, I went into, I don't even know what it was, undiagnosed for 10 years, whatever. I just suffered a lot. But it was like this total hypervigilance, anxiety. I mean, so I first diagnosed myself with like postpartum PTSD, like, a few years ago, but now I'm wondering is like how much is it like sensory overload of being a parent? Like, I mean, or both? DR. MEGAN NEFF: I would argue both- KILEY HANISH: Yeah, and so- DR. MEGAN NEFF: [INDISCERNIBLE 00:24:29] on top of each other in really brutal ways. KILEY HANISH: I feel like… and this has nothing to like, say bad things about my children, but becoming a parent broke me. Like, it turned me crazy, into like, my mental health it just was never the same and I think part of it's like, with things I used to do to self-regulate that I didn't know where self-regulation strategies were no longer possible once I have children. And just the feeling of like being claustrophobic, and constantly on, and all of that, so… DR. MEGAN NEFF: Yeah, Kylie, first of all, just thank you for saying that. Thank you for saying becoming a parent broke me. I think, again, like we've got to hold space for so many complex emotions. And I think this gets really tricky to talk about as a parent. Of course, we love our children, I'm so thankful for my children, I wouldn't have life any other way. But I feel similarly. Like, so my children are now 13 and 10. So, I'm through the thick of it, I would say. Those 10 years, especially, those five years, when they were like two neurodivergent children, I didn't know were neurodivergent, no one was sleeping. They're sensory seekers. Like, I was so, first of, all tired and I think partly because of the pregnancies and complications my body felt very broken. I wasn't sleeping, being touched, and sounds all of the time, having a hyperverbal toddler talking all the time. Like, for someone with a sensitive sensory system, that's a lot to absorb. And I think there can be a lot of shame, especially, for mothers around, like, why is it so hard? And I did the hyper-vigilant thing, especially, with my second. Like, it's true. KILEY HANISH: Yeah, and you're worried they're going to die. Like, constantly, like, are they breathing? DR. MEGAN NEFF: Yeah, yeah, all that. KILEY HANISH: So, it's just so complex, all of it. DR. MEGAN NEFF: Yeah. PATRICK CASALE: I imagine that there's this, like, really confusing simultaneously, like, held grief experience. Obviously, I cannot relate, but where it's not only postpartum, and grief, and grief around loss, but then there's also grief around loss of identity because as a parent your identity has completely shifted and changing. And then, you have to hold space for, I'm grieving the loss of who I was, or what my role was, or how I moved through the world. Now, I'm also grieving this newfound role in my life and I'm kind of, it sounds like there's a lot of shame-inducing experience too, of like, I'm not getting it right? Why do I feel this way? That's so complicated and that's so heavy to have to carry. DR. MEGAN NEFF: I love that, Patrick, that inclusion of identity, I don't know about your experience, Kiley, but like that was huge for me. I was kind of coming out of academia, I had just finished my first graduate degree, and I thought I was going to love being a stay-at-home mom. I now understand like, how much of my identity comes through my interests and my values. And my husband will talk about this, it felt like I was like trying to find something to orbit in those years. Like, I remember, I got really into sewing, and I got really into like, kombucha making, and all the DIY stuff, but none of it, like, felt robust enough. And then the shame of like, why am I not content as a stay-at-home parent? Yeah, yeah. KILEY HANISH: Yes, I agree. And looking at other people, well, number one, like I couldn't leave the house very often because I was like, obsessed with nap schedules. And it just overwhelmed me and all that. But then all the other people were like, "Oh, I'm taking my baby everywhere." And all that. And then being a bereaved parent on top of that, you can't go into normal spaces with parents and children because you're like, "I have just been through, like, a trauma and you don't understand and so it's way different." Yeah, I mean, I feel like there's a whole nother parenting episode here. DR. MEGAN NEFF: Yeah, there's a lot. KILEY HANISH: There's a lot. Yeah, I mean, yeah. DR. MEGAN NEFF: Yeah. Did you find community like… KILEY HANISH: No, I didn't. I was very isolated. It was super isolating. It was hard. And I also feel like my interests are not… yeah, I cannot be a stay-at-home mom. Like, I am a disaster. And, I mean, I'm good at all the things and all that, but it's just like, there isn't enough, like, intellectual meaning and purpose. DR. MEGAN NEFF: Yes, I literally had, like, I feel like my brain is atrophying. KILEY HANISH: Yeah. DR. MEGAN NEFF: Yeah, yeah. KILEY HANISH: And then not being able to connect to other parents, even like as kids go through school. Like, I'm so intense and I'm like wanting to talk about like, things that I care about, and being able to talk to men more than women because men talk about things rather just women it's just small talk. DR. MEGAN NEFF: Yep. KILEY HANISH: So, it's interesting. DR. MEGAN NEFF: Yeah, I think mom culture has been the hardest place for me to integrate. And I didn't understand it for so long, that that brought on a lot of shame. But yeah, I have like a visceral response to mom culture. I actually hosted last year an autistic moms group. And it was the first time that I felt connected in a group with other moms. KILEY HANISH: Yeah, well, there's this woman [PH 00:30:37] Moinia Taslon who wrote an article, a qualitative study of sensory experiences of autistic mothers, which I recently read, and was like, "Oh, this explains everything." And then with my students, we kind of took that and one other article, and did a survey with autistic mothers to just understand their experiences, and right? Like, they're all diagnosed post-children. And just all the things that are hard for them, that are different than, I mean, parenting in itself is really hard anyways, but you add the autistic piece, and the sensory challenges, and all that. It's fascinating, so… DR. MEGAN NEFF: I would love to see your research from that. KILEY HANISH: Yeah. DR. MEGAN NEFF: Yeah, I think, you know, I've shared this before, maybe it's changed by now. But if you Google like, you know, autism and pregnancy or anything related, yeah, to kind of birthing, you'll find a lot of it like how to avoid having autistic children, but the experience of the person birthing who's autistic, like, we're only now beginning to get curious about that experience. And yeah- KILEY HANISH: Yeah. And, like- DR. MEGAN NEFF: Go ahead. KILEY HANISH: So, I was going to say, like, there's like the pregnancy itself, so the interaction with medical providers, the sensory pieces in the hospital, all that. And then there's the after… It's fascinating. But I even remember, like with my last child, so I have two living children now, but I went in, and it was like a very quick, like, one hour, I got to the hospital, and he was born. But like, I hired a doula for that one because I wanted to, like, reclaim my birth experience. And she and my husband were talking the whole time. And I was like, "Just shut up." Because like, when I was there, like, I don't know, for me, I mean, labor for everyone's different, but I was very much in a meditative state. And I just like, "Why are you talking…" And then I heard the nurses like, "Oh, well, we need to do this." And like all these questions, I was like, "I'm in labor. Like, just nobody talk to me right now." And even, like, the doula did not understand pregnancy after loss. And was like telling me at eight months, "Well, you should really talk to your baby. You know, you're having a baby." And I was like, "You have no idea." So, I mean, that's the other thing is just like, my nonprofit, which I don't think we said the name of is Return to Zero Hope. And my husband made a film about our experience called Return to Zero Hope that like, is a feature film, has mini driver in it. DR. MEGAN NEFF: Oh, wow. KILEY HANISH: But then she did an incredible job. So, it's like, emotionally, our story, but with the nonprofit we have all of these free webinars on there, some for health care providers, some for parents, right? Just like educating and empowering people, which I think is so important. And so, that's just my little shout-out there. DR. MEGAN NEFF: Well, please talk about your resources. I mean, these are the resources and I love this. Like, you built what you would have wanted and needed. Actually, I feel like I see that a lot with autistic people. Like, when we have an experience it's like, okay, how can I build the thing I didn't get? And I love that you've done that. So, yeah, please [CROSSTALK 00:34:11] for like pregnant and birthing people? KILEY HANISH: I mean, so first of all, I'll just say to, like, normalize this, the film didn't come out until nine years after our loss, a long time. And the first, like women's healing retreat I held, which is the first thing I did was nine years after the loss. So, it was a long time. And so I tell people, like, you know, I think people want to do something. Like, there's sometimes there's that urge. And for me, it took a lot of time until I feel it's a very spiritual journey for me. Like, I heard a voice in the shower that said, "You should do a retreat." I'd never been to a retreat, I never hosted, I didn't know anything. But it came from this email I received about there was a lack of resources and a lack of connection of other grief parents. And I hadn't had any support. It was like this isolated me and my husband for nine years. We understood, but no one wanted to bring it up to us because they thought that it would bother us. And I mean, well, that's a whole nother thing. So, with that, I just started doing that. And that's been an evolution and now has evolved. We do in-person retreats, we're doing a provider retreat in 2024, which I'm so excited about because I mean, first of all providers after COVID it's so hard, but also providers working in perinatal health, perinatal mental health it's hard, and there's nowhere for them to go so… DR. MEGAN NEFF: Yeah, it's one of the highest burnout professions among physicians is OB-GYN, which, like I think makes so much sense. People often think about, like, working in OB-GYN is like, oh, it's all happy. But no, I mean, it can also be traumatizing for providers in a different way. But I love that you're thinking also through [INDISCERNIBLE 00:36:35] plans and community among providers. KILEY HANISH: Yeah. And then with the pandemic, I think there's been a lot of gifts with being able to do virtual support groups, reaching people who are anywhere in the world, really, because a lot of people even if there was a in-person group before the pandemic, a lot of people don't live in places where they can attend. And so we do a really unique structure. And I think everything, my partner, Betsy, in the nonprofit, like we have really pulled our life experiences and sort of unknowingly created resources that are neurodivergent affirming, and trauma-sensitive, and resilience-focused. And I think that what we offer is really unique. And so like with our support groups, they're six weeks closed support groups, so it's the same people. So, you can build community, but there's trying to create safety as much as possible. We have a curriculum that we follow, we walk people through things that you don't even know that you need to know about grieving and navigating life after loss. And then the group itself is very structured. And like, we did this because I would never go to a support… I went once, like, right when the movie was coming out. And I was like, "Maybe I should go and process." And I went to this group, it was in a hospital, which, first, hospitals freaking scare me. Secondly, it was in the cafeteria, so it was like uncomfortable. And it was zero structure. And it was like people just telling their traumatizing stories. And I left. And I was just, like, at a certain point, and I also, like, get tired early in the night, like, because my brains been on all day. And I just got up and left at a certain point. Like, I'm not sitting through this. But being like in our groups, it's like very structured. Like, we have a topic, we have a psycho-education piece, we have a discussion question, people answer one by one, so there's no like crosstalk. Then there's like weaving it in, and then there's self-reflection, but it's very tightly structured. DR. MEGAN NEFF: I love that, I love that. KILEY HANISH: So, like, and I love it, too. I would never do any like… and I tell people even at the retreat, I was like, "I would never go to a retreat, but don't worry, like we got you here." Like, it's all super tightly held and I feel like really holding space is what we are doing. And so there's all sorts of different support groups. You know, we started out with pregnancy and infant loss and now there's early pregnancy loss, recurrent loss and infertility, termination for medical reasons, people of color. We do like an LGBTQ drop-in group, pregnancy after loss, parenting after loss. So, there's like- DR. MEGAN NEFF: Oh, my goodness, you do so much. And because these are all such different experiences I love how it attuned you all are. KILEY HANISH: Yeah, well, like, for example, before I would say people who had a TFMR termination for medical reason, that they could just come to the pregnancy and infant loss. So, I was like, "Yeah, of course, you're welcome, you lost your baby." And some would come. But like, no, they have a very unique experience and that group sells out all the time. And we're the only, like, pregnancy and infant loss organization who sees that as a loss. I think there's a lot of groups out there who feel like it's abortion, and they're not going to be supportive of that. And I'm like, "But these people… you don't understand. Yes, they made a choice, but you know, it's for their health, sometimes, or their baby is going to die, or live a very disabled life." And you don't even know, you cannot get the information that you need. I mean, that's… So, it is a very specific space that needs their own space. DR. MEGAN NEFF: Absolutely, absolutely, yeah. KILEY HANISH: Okay, what other things do we… We offer, just the website itself is a wealth of education information. We have downloadable PDFs, that is all free, we have beautiful printed brochures for provider offices. Like, for example, partners grieve too, grandparents, siblings, loss of multiples, like early pregnancy loss, and even wanted, like, all these different things, so there's so many different topics. And then the webinars I mentioned, so like we have a YouTube channel with different playlists, which is amazing. And then providers, we offer monthly provider consultation groups. One is for, like, more of the hospital medical providers, one is more for mental health providers. And I don't know, I mean, that's kind of the main. We have a pregnancy and infant loss directory, also, I forgot about that. So, like, that has- DR. MEGAN NEFF: Really helpful. KILEY HANISH: Local and virtual resources, depending on whether you need, like, counseling therapy, or like a support organization, psychiatry. Like, I'm really tied into Postpartum Support International, which offers like the perinatal mental health certification. So, reproductive psychiatrists. DR. MEGAN NEFF: Yeah, I like that. You have [CROSSTALK 00:42:44]- KILEY HANISH: So, like, I send everyone. I'm like, "You need to see a reproductive psychiatrist, regular psychiatrist do not know about, like, they give you the wrong information." And I'd be like, I had someone working for me who became pregnant, and they were on an antidepressant, and the psychiatrist says, "No, get off of it." And I said, even the OB, and I was like, she was not able to get out of it. I was like, "Oh, no, we need to get you to someone who knows what they're doing." DR. MEGAN NEFF: Oh, yeah, that's scary. KILEY HANISH: [CROSSTALK 00:43:17]- DR. MEGAN NEFF: Yeah, and I think you've built neurodivergent, like, accessible resources without even realizing that's what you're doing just by being you and by caring. Like, you built this, and like, because right, only in the last year you discovered you're- KILEY HANISH: Well, I did like a self-diagnosis in December, which was like, nine-ish months ago, and then a formal diagnosis because I wanted to see what was going on with like trauma, like [CROSSTALK 00:43:46]- DR. MEGAN NEFF: Yeah. KILEY HANISH: …because there was a significant amount of trauma from all of this, stillbirth and stuff like that. But I got a formal diagnosis of, you know, autism, ADHD, plus some other mood disorder stuff, but I knew it all. So, now, I'm like, very much an advocate of self-diagnosis. I was like, "You know what, this didn't really do anything." I mean, it validates me and there's not something else hidden in there, but I was like, "Whatever." I'm like… DR. MEGAN NEFF: I love that because I think sometimes it can be put on this pedestal like medical diagnosis all of a sudden huge things will change. But I love they're like, "You know." KILEY HANISH: Well, and then it's like, they're like, "Oh, here's your diagnosis. Okay, good luck." Nothing, nothing. And I was like, if I was that person, obviously, they're not neurodivergent, if I was the person doing the assessment, I would be like, "Hey, here's the whole website I built, here's the all the blog." Blah, blah, blah, blah, you know? Kind of like what you did. That would be something that I would do, but they just like, "Okay, here you go." So, I don't know. DR. MEGAN NEFF: Which was your experience around pregnancy loss. KILEY HANISH: Yeah. DR. MEGAN NEFF: Yeah. KILEY HANISH: And so I also feel like, I cannot take this on right now, but the gap in, like autistic adults, like giving information, and just like, but how many people I talk to now who share, I mean, they share the same, "Oh, my kid has autism." And then I self-disclose. And then they're like, "I think I might, too." And then I'd like, "Here's my Google Drive with a bunch of stuff." Which is totally informal. But I'm like, "There's so much stuff I put together go read it." DR. MEGAN NEFF: I love that. You're so good at like systematizing and building systems, and I love that. KILEY HANISH: It's like a superpower that I didn't even know that I had, but it's so, I mean, I think going back to kind of that initial experience of coming to know so many of us who by getting access to information, and that psych-ed piece, I mean, that's something you are so good at is building like, here's the things that are helpful for you to know about your experience, about your body, about what to expect. DR. MEGAN NEFF: Yeah, yeah. I'm cognizant of time and I think the part on our agenda we maybe didn't hit was around the grieving process. And I know that you mentioned like, I think there were some collective rituals or practices that you felt were helpful or that were distinct as an autistic person. Do you want to share a little bit about the grieving process? KILEY HANISH: Well, okay, I think actually, for me, up until I started doing the retreats there was not a lot, you know? There was, basically, like, I didn't have any guidance. I mean, I don't know. And at that point, the Internet was, like, not really a thing. It was so long ago. And so I feel like my connection was very private and I connected, or my son appeared to me as a white butterfly. Like, I feel like the deceased of any kind can send us messages through animals, insects, things like that, or signs, different, you know. There's a great couple of books out there by a medium named Laura Lynn Jackson, The Light Between Us and Signs, and I just love it, just, basically, the veil between this world and the other world is very thin. And I think I've had a lot of like psychic abilities in terms of like being able to, like, because I'll hear… Everything with Return to Zero has been inspired by other. I'm a very, very left-brain person. So, this is not how I operate. However, it is very much nothing I ever would have thought I would do is like, I was being chosen to do this. And I know that sounds woo woo, but it's just the way it is. DR. MEGAN NEFF: I actually love it because I'm so similar to you. I'm so science-based, except when it comes to, like, collective energy, spirituality, and like I sometimes say I feel like a lot of autistic people would have been Shamans in a past life, like, in historic times, of like, I've definitely had moments of knowing when something is about to happen, or like, these spiritual experiences. I'm like, this does not fit within my scientific frame, but yes. So, I actually love that. And I know it sounds really woo woo too, so I often don't talk about it. And these are very real experiences I've had and I know a lot of autistic people have. KILEY HANISH: Yeah, and so I think, you know, I didn't really do a lot. It was through the retreats, through other people who were even more connected to the spirit, I would say, that the importance of bringing in ritual and collective ritual. And I think the biggest things we do are, we like light a candle, like, we have like a group circle, and we have like this, I'll say altar, but it's not just on the floor. And we have candles with every baby's name tied around the candle, and we light it every morning when we sit down, and we [CROSSTALK 00:49:36] candle, they say their baby's name. So, I like I'd say, "Norbert." And everyone else would say, "Norbert." And just like you don't ever get, if you named your baby, not all people do, but you don't ever get to hear their names spoken. And so it is really powerful. So, like that's something that we do as a group. We also allow people… we set up like a memorial table that people can bring things or pictures, whatever because that's also something that people don't always put out in their home, or they put it out, but it's in this, like, a more private space. I don't do a lot and I sometimes feel bad about it, right? But I know that that's just me. You know, I think like, green- DR. MEGAN NEFF: [CROSSTALK 00:50:29] oh, sorry. KILEY HANISH: No, like, right, there are societal expectations- DR. MEGAN NEFF: Yes, yes. KILEY HANISH: …of grief and also gender expectations. DR. MEGAN NEFF: Yes, yes. And especially, I think, for autistic women, those conflate because, especially, if we have alexithymia. Like, I definitely experienced that through my grief, specifically, around my pregnancy loss is I'm not doing this right, there's a right way to grieve this and I'm not doing it right. KILEY HANISH: Yeah, like, I never cry. Like, I mean, occasionally, but it is rare. And so like, after my loss, I didn't cry. My husband was way more emotional than I was. And I was just like, super stoic, and I go to these retreats. And the last retreat, I actually knew I was autistic. And so I said to everyone, I was really excited. I was like, "Hey, just to let you know, I'm autistic and I don't show a lot of emotion. So, it might look like I'm really stoic, but I do have a ton of emotion inside of me, it just doesn't show. And when I'm there, also, it takes a tremendous amount of concentration and energy to hold space." And like when Patrick talks about his retreats, I'm like, preaching to the choir. Like, I do this. Now I know when I have to go like, take a little sensory cocoon nap in the middle of like, in the afternoon, but the draining, like I am drained at least a week after. Like, I cannot schedule anything and then you're like, at what cost? But it is such a powerful experience. And it is such an honor to be with these women. It's so powerful. You can't even put words to it. And it drains the life out of me. So, it's very interesting, but it- DR. MEGAN NEFF: Yeah, yeah. Well, and there's some interesting research that, like, we are more impacted by kind of the affect of people around us. We don't always know how to identify it, which actually makes it kind of more of a sensory load, but that we pick up energy tone a lot of us very sensitively. And again, that disconnect of like, maybe looking really flat, but being so deeply impacted by the emotional tone, I would think, especially, in grief spaces that's a complex autistic experience. KILEY HANISH: Yeah, I mean, I am hyper-empathic and hypersensitive to other people's energy. And that's also, like, I know, auditory is one of my big sensitivity areas, but energy, like literally, someone walks in the room, I can sense what's going on, even if I drive outside, and there's like, we had, like, a hurricane warning here a few weeks ago. And like, I wouldn't be here to put it together. But I went to the grocery store, and everyone was like, and I was like, "What the heck is going on?" Like, just superpowers, but it's hard to say what it is. DR. MEGAN NEFF: Yeah, yeah, absolutely. KILEY HANISH: Yeah, okay, more about grieving. Like, I mean, I think that one big one is like not grieving as other people think you should be grieving. DR. MEGAN NEFF: I think that's a great global. Like, whether it's a death of a loved one, whether it is an identity shift. I think that's a really global, like, autistic experience of the way we grieve, especially, what people observe from the outside doesn't always match kind of the cultural expectations. KILEY HANISH: Yeah. And then I think there's also the false belief in, like, old grief culture, that like, oh, like, you get over your grief, you move on from your grief. And I feel like for me, and I think this is similar, like people are really great for about three weeks after something bad happens. And then they all continue to go on their life and your life it's like there's a before and an after, your life will never be the same. And you're just, like, standing there in shock, and you're like, "What the heck?" You're like, "My life, I can't go on." And so, it's this long, long process of integration and processing, and other people, like, "You look better or you seem better?" You know, things like that. And maybe even not to me, I don't know. But I hear this all the time. And you're like, well, this is complicated. And this just doesn't happen over a week or a month, like grieving is a lifetime, and it changes. And like, it's not linear at all. There's no stages. And it's like, back and forth, and up and down. And you and your partner are grieving on different timelines, and different, like phases. And it's messy. DR. MEGAN NEFF: It's so messy, it's so messy, especially, with yeah, the kind of co-grief, if someone has partnered, and then the timelines don't always, like, sync up. And that can create confusion and kind of disconnect. Yeah, yeah. I love how you were talking about grief of, I'll often talk about like, yeah, learning how to carry the grief well, but I love your language of integration. And that, yeah, this myth that it's like something we get over, and then move on from versus like, it becomes part of us and we live with that in an integrated way. That's like, yeah… KILEY HANISH: And I think for, like, anyone that dies, so in my case of my stillbirth, like, I still celebrate my son's birthday, he would have been 18 this past July, but people do that, that will be forever. But even with loved ones who die who are not babies, like you're going to remember their birthday. You might remember their death day. Like, those are days to like, whether you do something or not, it is a touch point, I think. But other people around you don't see that necessarily. DR. MEGAN NEFF: Yeah, yeah. They forget the touchpoints. And yeah, yeah, yeah. KILEY HANISH: You were going to say something but you probably forgot. DR. MEGAN NEFF: Well, it's like, it was in response to something you said like two comments ago. So, [CROSSTALK 00:57:44] connect now. I was just going to share I appreciate the wave metaphor of grief. That was, I was 18 when I first had my significant loss. My best friend in high school died of a brain tumor. And learning, like, I remember the first week or two it was just constant. And then I remember the very first time I forgot that David had died I was in a movie theater. And maybe I forgot for five minutes. And then it hit me like a wave. And that idea of, at first, like the wave, that it's like a tidal wave, it's constant. And then there might be some spacing out of the waves, but like, it can catch you off guard. Like, maybe it's been a stretch since there's been a wave, but there'll be some remembrance. And a wave can just kind of be like a sneaker wave and catch you off guard. But that imagery of waves was really helpful in my initial grief of, like, just understanding that this is a process. It ebbs and it flows, and there's some really heavy grief days and there's, like, lower impact days. KILEY HANISH: And I think, also, like one thing I experienced myself, but also hear a lot is, you know, you will over time have moments of respite from that intense grief. And hopefully, those moments get more often and longer. But there is this connection… like there is an attachment with you to your loss or your baby through the pain. And so you start feeling guilty if you don't feel the pain or you begin to feel moments of joy. And so teaching people that okay, we don't only have to connect through pain, we can also connect through joy or through other ways. Like, there's lots of ways to connect and so, you can let go of the pain and still remain connected. So, I thought that was like something else that I learned. DR. MEGAN NEFF: I love that because you're absolutely right, that can lead to complex grief. In the DSM, there's a diagnosis of complex grief, especially, when people kind of get stalled in the grief process. And I think it's part of that, of I don't want to release my pain because this is my attachment to that person. But I love your expansion of it, of there's so many ways that we can continue that attachment beyond pain. KILEY HANISH: Yeah. And so, like the term or a term or is continuing bonds. You can go out there and Google that. And the idea that, yes, there is a physical relationship that is not there, but there's other relationships that can continue. So, it's interesting. DR. MEGAN NEFF: I'm going to put a plug, I don't know what you think of this theory. But since you said continuing bonds, I'm going to put a plug out for Wordens for tasks of grieving, and much appreciate that to the stages of grieving. They're, like, active steps that a person takes in the process of grieving and they're nonlinear. So, there's four tasks, and the thought is like, you will be in one of these tasks, like, and you'll go back and forth. And it's a process, but one of them has to do with the continuing bonds. And I'll put a link in there, but that's another great... if someone is experiencing, especially, the loss of a loved one, I think Worden's tasks of grieving can provide a framework, which again, is helpful for autistic people to learn how to integrate that loss and live with it. KILEY HANISH: Well, I'll look it up. DR. MEGAN NEFF: Yeah, yeah. I'll send you a link. KILEY HANISH: I know we're sort of running short of time, I just have one other thing that I didn't really think about before that I think is important. So, right, as autistic people our friend circle can be small, very, very small. DR. MEGAN NEFF: Yes. KILEY HANISH: And so I know that, like, we talk about, like in our relationships module, like with your partner, that your partner is also grieving, and you can't be the only support for each other. However, when you're autistic and you don't have a lot of other people to talk to that's really hard. And like, for years, the amount of therapists I tried to find that didn't understand my experience at all, you know, and so being really lonely. And it wasn't until I met other people who had been through this, that I was like, "Oh my gosh. Like, you get what I've been through." And it's the same as being autistic, but just like being with other people who've been through this type of loss and not having to explain yourself. Like, those are my closest relationships now, but it's lonely. DR. MEGAN NEFF: Yeah, yeah. I think after this episode record if you start an autistic pregnancy loss group, I think that would fill up really fast. KILEY HANISH: But the question is, do people know they're autistic? DR. MEGAN NEFF: Oh, probably not. Like, I definitely didn't when I was going through it. And I would imagine a lot of people even five, 10 years later, would still benefit actually, from- KILEY HANISH: Yeah. DR. MEGAN NEFF: Because I do think that we perhaps are more prone to getting stalled in our grief process because of alexithymia, because of interoception, because of lack of community. So, I actually think people who have now since discovered they're autistic, even if this was 10 or 12 years ago, like would still benefit. KILEY HANISH: Interesting, yeah. DR. MEGAN NEFF: That's my hypothesis. KILEY HANISH: I don't know. I think like, if you suspect you're autistic, if you have a autistic child, or you're highly sensitive. DR. MEGAN NEFF: Because I think if you're highly sensitive person. KILEY HANISH: Because I'm attached to the highly sensitive person thing about like, five years ago, like that was my language. DR. MEGAN NEFF: Yeah, like, that's the pathway for a lot of, especially, women, I notice, yeah. KILEY HANISH: Yeah, so, okay. That's all. I mean, we could keep on talking forever, but there's a lot of things in here. DR. MEGAN NEFF: There are so many interweaving themes, which is kind of what we do here. We try to create space for how complex these topics are. And I think we definitely did that today. There's a lot of interweaving pieces here between identity, autism, loss, grief, advocating the medical systems. There's a lot here, yeah, yeah. Thank you so much for the generosity of your time. Like, I know you're wildly busy, but also just the generosity of sharing of yourself, and your experience, and of the community that you've built. It's interesting, this episode might be listened to less, because people will see the title and be like, "I don't relate to that." But I think the people that listen to this will be so deeply impacted because of what you said, of, there are so few spaces for autistic people to talk about this. And our worlds tend to be small. So, I think the impact of this episode for those who relate to this subject, I think, will be really incredible. So, thank you. KILEY HANISH: Thank you. Thank you for having me on. Like, I feel like I've been devouring your podcast. I've been like, I haven't done this so deep dive into your website because there's so much but just like I joined your membership just because I want to learn about myself. And it's just so amazing to find language, to feel validated. And that you both are so vulnerable and that it's hard to do that, I think. But like, what is most personal and intimate is really most universal and people identify. And I know that they're grateful. So, thank you. PATRICK CASALE: Thank you so much for coming on. Okay, well, awkward goodbye time. So, new episodes are out every single Friday on all major platforms and we will see you next week.
Statistically, 70% of Autistic individuals identify as non-heterosexual, and genderqueer people are 3 to 6 times more likely to be diagnosed as Autistic than cisgender adults. In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, talk with Rebecca Minor, MSW, LICSW, a gender expansive therapist and advocate in the neuroqueer space, about genderqueer identity and neuroqueer identity—what they are, how they intersect, and how they are perceived versus present in society, relationships, and the mental health community. Top 3 reasons to listen to the entire episode: Understand what is genderqueer identity and neuroqueer identity, as well as delve into the misconceptions surrounding them. See how neurodivergence and queerness overlap for both Autism and ADHD, including what studies have been done around this. Understand the importance of self-disclosure in therapy, particularly for marginalized communities with intersectional identities, and how it can build connection and community, as well as offer emotional relief for clients. There is still a lot to learn and unpack about queerness and neurodivergence, but research suggests a strong connection between neurodivergence and gender identity. We hope to shed light, give valuable insights, and broaden your understanding of these diverse identities. More about Rebecca: Rebecca Minor, MSW, LICSW is a neuroqueer femme, clinician, consultant, and educator specializing in the intersection of trauma, gender, and sexuality. As a Gender Specialist, Rebecca partners with trans and gender nonconforming youth through their journey of becoming, and is a guide to their parents in affirming it. Rebecca is part-time faculty at Boston University School of Social work and always works through a lens that is neurodiversity-affirming, trauma-informed, and resilience-oriented. In addition to her clinical work, Rebecca has provided cultural humility training and consultation to organizations, schools, and businesses for the past decade. You can follow her on Instagram, hire her for parent coaching, or check out her blog, and free guides and course for parents and caregivers! Rebecca's Website: www.genderspecialist.com Work with Rebecca: https://www.genderspecialist.com/coaching Rebecca's Instagram: http://instagram.com/gender.specialist Rebecca's Facebook: https://www.facebook.com/RebeccaMinorLICSW Resources Neurodivergent Insights Masterclass Series: Exploring Neuroqueer Identities by Dr. Megan Anna Neff and Rebecca Minor: https://learn.neurodivergentinsights.com/exploring-neuroqueer-identities/ Neurodivergent Insights Infographic: https://neurodivergentinsights.com/autism-infographics/trans-autism Transcript MEGAN NEFF: So, over the last two weeks we have been… PATRICK CASALE: Did you forget your settings [INDISCERNIBLE 00:00:12] because- MEGAN NEFF: [CROSSTALK 00:00:13] no, it takes me a second, Patrick. I don't have my process in this video. We should keep that in. Okay, so, over the last few weeks, we've been exploring autistic identity and neurodivergent identity. And I can't think of a better guest to have on today than Rebecca Minor, who is neuro queer and does a lot in the neuro queer space. And so, we're going to dive a little bit deeper into talking about the intersection of queerness and neurodivergence, broadening it to autistic and ADHD identities. Okay, Rebecca, I'm going to try to introduce you. I know I'm not going to do it justice. But here we go. So, we met on Instagram, which is a weird thing to say. I don't meet people on Instagram anymore. We met before- REBECCA MINOR: No. MEGAN NEFF: Yeah, I'm too, [CROSSTALK 00:01:04] and I get so overwhelmed. So, I'm so glad I met you like when I had a small following and when I actually spent time in the app because I've loved… How did we meet? I don't even know how we met. But I love that we did. And we've developed what I would say is a really wonderful friendship. And we've presented together on your neuro queerness. You are a gender-expansive therapist, but if I'm tracking right, you're kind of doing less clinical work, more speaking, more advocacy, lots of trainings. So, gender expansiveness in teens, this is your jam. Do I have that right? REBECCA MINOR: You do, yeah, yeah. I'm still seeing too many clients for how much I'm doing the other things. But yes, I am. MEGAN NEFF: Right? I am not surprised by that. REBECCA MINOR: So, welcome. MEGAN NEFF: What would you like to add about, like just giving our listeners some context for who you are. REBECCA MINOR: So, I am a social worker by training. Some people care about that. I have been in private practice for about five years with a variety of settings, different experiences prior to that. And I work primarily with queer and trans youth and their journey of becoming. And most recently, I'm spending a bulk of my time working with parents and caregivers to really support them in being able to better support young people. MEGAN NEFF: I love that. I've been so encouraged by how many parents are really showing up and they're doing their work to show up for their kids. And I love that you're coming alongside parents in that journey because it's a lot to unlearn, and then relearn, and just to address like, the fear that comes with parenting a queer kid. REBECCA MINOR: You nailed that, yeah. And that's so often what it is, right? It's just like, because of a lack of information there's a lot of fear, and concern, and feeling like they should have all the answers. And so, then, there's a shutdown, right? And it's like not because they don't care, not because they don't want to support their kid, but they're stuck. And so, that shift can happen really quickly, which is also like an incredibly meaningful piece of the work that feels so different than sometimes longer-term clinical work or trauma-focused work that I've done, which goes on and on. This is much more like, "We can take care of this." MEGAN NEFF: I like that kind of work. It's funny, I work long term as a therapist, but it can be really nice to then have those cases where it's like, "Oh, we can actually address this in five sessions and get you on your way." REBECCA MINOR: Mm-hmm (affirmative.) MEGAN NEFF: Which is very, like, I feel like a heretical thing to say when you come from the psychodynamic tradition, but I actually really like having a balance of the two, yeah. REBECCA MINOR: Yeah. MEGAN NEFF: So, I think how we met is kind of interesting because it goes back to this identity thing. So, I was working in the like, autism, ADHD space, primarily. You were working in the gender-expansive space primarily. I started seeing like, oh my gosh, there's so much overlap with queerness, and specifically, gender queerness among neurodivergent people. So, I started learning about queerness. You on the other hand, do you want to share what you were discovering in your practice? REBECCA MINOR: Yeah, and I was going to say, I think I do remember how we met, which is mostly that I was like, "Hello, am I autistic?" Which is probably how you meet a lot of people. But I started noticing I was like, wait a minute, if I really sit down and think about it started with one client, right? Who came in and had seen something online and was like, "I think I might be autistic." And I was like, "That's markedly different, like what you're describing is markedly different than what my training had been." And like in high school, I had volunteered in what? At that point, we were calling the special needs classroom and worked with autistic folks. And you know, the tropes that I had understood about that were so different than the clients I was working with. But once I started peeling back some of the layers and reading more of the current research, I was like, "Oh, oh, are all of my clients neurodivergent and I missed it?" Like, and so, it really set off this thing for me where I got hyper fixated and was researching like crazy, and taking all the self-measures, and trying to figure out not only what was going on for all of my clients, but also what was going on for me. And so, I think that's when we started talking because I was like, this is just a fascinating clinical thing that I'm seeing. And also, I'm not clearly fitting into one of these categories, and I love your Venn diagrams for that reason because I'm like, you know, I've got a little bit of various things and the visuals made so much sense to my brain. MEGAN NEFF: Yeah, yeah. REBECCA MINOR: Yeah. MEGAN NEFF: I love that. Yeah, we were having parallel process. And then, for me, in my process, I was unpacking queer identities, which for me came after the autism discovery, which you were further along in that journey. So, it was a really cool friendship where both clinically, but personally, we were kind of exploring, like, the other specialty which we had been led to by our home base… Okay, I have a visual of what I'm trying to say, but I'm not putting into words well. But yeah, I think that's, yeah, that we were able to kind of both explore each other's specialty in conversation. REBECCA MINOR: Yeah. And that's when we were like, "Wait, why aren't people talking about this more?" And then I think that's when we got the idea for starting that, like, ask our followers questions about that intersection. MEGAN NEFF: Yeah, yeah, yeah. And I think that'd be a helpful thing to get into, but we like to anchor in lived experience here. So, can you share a little bit more about your own neural queerness and your journey around that, or whatever you want to share around that? REBECCA MINOR: Sure. So, I think one of, kind of, the place that I've comfortably settled is in using neuro queer as a label identity-wise. I'd gotten comfortable with the concept of queerness and that felt good to me, then I became aware of how inextricably linked I think my queerness is to my neurodivergence. And so, it just felt like it made so much sense and it's easier to say. That's one thing. But I did go through a long process, and I'm still navigating the, like, "What exactly is going on here?" In terms of my own brain. I have a trauma history and a history of anxiety. And so, those things can confuse some of the, you know, they can present in some similar ways. And so, it's been a journey of kind of parsing out like, what's potentially autism? What's potentially ADHD? What's potentially trauma or anxiety? Or this or that? Or, you know, being burned out? Or just the combination of like being alive during a pandemic. So, yeah, it's been interesting. At times, it's been pretty difficult and emotional. And you've been so lovely and gentle with me, which I appreciate, when I have weird questions, or I'm like, "Does this mean this?" And you're like, "Well, not always." But yeah, so I feel kind of like, I definitely meet criteria for ADHD, that feels solid. And I think- MEGAN NEFF: Thank you too. REBECCA MINOR: And I was going to say anyone in my life would also concur. And then I have like a sprinkling of other things that one might consider to be like- MEGAN NEFF: I call it the neurodivergent potpourri bag. REBECCA MINOR: Yes, yes. That's me. Got some family history in there. So, yeah, it's been interesting, and I think professionally, it's always a weird thing to navigate that like, personal/professional line of how much do I share? How much do I not share? Is it okay for me to talk about these different things if I don't feel like I can use the hashtag actually autistic because I don't have a diagnosis? Do I need formal diagnosis? And the thoughts go on, you know? So, that's kind of where I am. I'm happy to talk about it, it's a fine thing to say. MEGAN NEFF: And yes, I think I know that about you from having seen you in public spaces. And that's something I like about your presentation style is how openly you talk about this. I'm kind of diverging from where I initially thought we might go. And I do want to get back to talking about gender queerness. But I think this will wrap into it. Part of what you're talking about is being in process of your own identity as a clinician, but also, as a public clinician, I didn't mention this, but you also have a platform on Instagram, and you create content as well. I heard on a blog post a couple years ago, that's probably been the one that gets the most feedback from clinicians, and it's about being an identity-based practitioner, when our practice is based on our identity in the sense of, I am an autistic therapist, therefore, autistic clients come to me. In our training, we're taught so much about like, blank slate, don't disclose. I'm just curious, both Patrick and Rebecca, your thoughts around exploring our identity while you're seeing clients. And then, also, while doing it publicly not just privately because there's a lot there. REBECCA MINOR: Yeah. PATRICK CASALE: See, we're doing a good job today. We're reading each other's facial expressions and all those things. I love that you just asked that question. I just want to also apologize for my voice today to everyone listening, it's struggling. I actually just had this conversation in our team meeting with our staff about using identity-based language, and especially, if they feel safe enough to do so because we are a practice that specializes in supporting the neurodivergent and queer communities in Western North Carolina. I know we've talked about this, Megan, at length, but I do think it's nuanced. We always say that. I feel like that's going to just become incorporated into our fucking conversations on this podcast is the word nuance. But it is nuanced, and it is complex, and I think it's also advocacy at its truest form for our clients who are so desperately trying to find a landing spot, a place where they can feel safe and comfortable, a place where they don't have to, you know, explain everything over again, maybe their circumstances are different, but they don't have to say or explain everything in a clinical interview like they typically would. And I just think it's so powerful, and so much more humanizing when we use identity-based language, when we are able to show up in those spaces. And I also think it's also really complicated, especially, for those of us who have audiences who have followings, as we're also unpacking our own identities, as we're also unpacking our own neurodivergent journeys. Like, for those of us who were diagnosed in adulthood, sometimes you get it wrong. And sometimes you're also unpacking your own internalized ableism that's existed throughout most of your life. And I think then you walk it back, and you learn, and you try, and you try again, and you continuously show up even when you get it wrong. And I think that's the most important piece here, for those of us who are showing up in public spaces. But again, I just cannot say enough how much I think that speaking out openly, and disclosing, and using identity-based language is just so important in terms of advocacy across the board for people who just don't feel safe enough to be able to do the same things that we can do. MEGAN NEFF: It certainly makes the countertransference more hot, is what I've noticed. Like, when your client is working through things that you're also working through. REBECCA MINOR: That's true. MEGAN NEFF: And Rebecca, I think you've experienced some of that or am I projecting? REBECCA MINOR: No, no, that's totally fine. I've definitely experienced that because, in real-time, it was like I was working with clients who were like, "Wait, is this, you know, what's been going on all these years?" And it explains all these things. And like, there's the relief, and the like aha of that. But there's also the grief and the pain that comes with that, and holding that for clients in session, but also, navigating that myself, it's a lot. And then, I also think about the parent audience, which I also have because I work with young people, right? So, like my teenage clients will be the first to tell you about my various neurodivergent tendencies because they have no problem with this or calling me out on them. But with parents, then it raises those questions of like, "Will they doubt my competency? Like, what does that mean?" And it was the same thing for me as coming out as queer of like, "Will parents then think I'm like luring their children into this lifestyle?" Which is not a thing, but like, is a concern. And so, yeah, it's the potpourri. MEGAN NEFF: It's going to be in the name of our episode, potpourri. PATRICK CASALE: It's definitely going to be in the description somewhere, probably on the website, too. I think the grief relief process is something we talk about a lot. And I've experienced, you know, pretty often, especially, when I was formally diagnosed at 35. I'm 37 now, it's been a year and a half journey. But I think you're right, the countertransference is really intensified, and simultaneously, the relief for the client has gone up exponentially. So, I think both of those things, as my therapist thing is always like, "Both can be true." Those are both true. And like, the ability for the client to… I also am someone who speaks openly about a former gambling addiction. When I've talked about that with clients, you see the immediate relief of like, "Oh, shit, someone gets it. Like, I'm not alone in this." And that has always been my driving force for disclosure. It's never been about like, what does it do for me? I always want to throw that asterisk in there for any clinicians who want to be like, "That's ethically not sound. Like, we don't disclose." But when we are talking about people who are represented within marginalized communities with intersectional identities, then I think its disclosure is that much more important of a therapeutic intervention and I think that when you start to realize like, that's what it's about, it's not about what it does for my sense of self. It's more about like, what does it do for the person who feels like there is no glimmer of hope? Or that things will never change or be different? REBECCA MINOR: Yes, yeah. And that's where that question of like, who is it for? It needs to be the guiding principle. One other thing you said earlier that I just didn't want to leave out was, oh, there goes brain processing, it was about getting it wrong. I was terrified of getting it wrong. And I still am, right? Like, there's still a part of me that's like, "Well, I don't know. Like, according to the data." And, you know, but in periods when I've been more burned out and gone back, and retaken some of the assessments, I'm like, "Oh, those numbers look a little different." But still, yeah, it's a thing. MEGAN NEFF: We're going to talk about RSD soon. And I think getting it wrong, well, first of all getting it wrong because like, we are all very justice-oriented. So, I think, especially, when we get it wrong for our communities and for the most marginalized communities, like I know all of us feel that deeply. And then, also, the, like, aspect of RSD. And I just read, like, social justice RSD. I hadn't heard that term before, but also, like a strong reaction to injustice. But because we've all had private conversations around this I know how much we care about not getting it wrong. And you can't be in public space and not step in it. Like, and it's good, right? It means we're… well, it's not good, but it's a sign that we are learning. REBECCA MINOR: Yes. PATRICK CASALE: And there's a lot of unpacking to do even now and continuously. And I think that is important no matter what. But I think it's so important when you do have public space that you take up because people are following you, people are listening to you, people are sharing your stuff. So, I think there is even, it feels like almost this pressure to get it right. And that, for me is a struggle sometimes because then I get into like perfectionism mode. And I'm like, "I have to get it right. I can't post this because this could get picked apart in 100 different ways." So, then I have to step back and think like, okay, what is the purpose of what I'm creating and posting because if it's informative, if it's supposed to be supportive, encouraging, etc, then I want to put it out there regardless of the fact that someone may say, "Next time you do this you should probably use this for vernacular, or this word, or this verbiage.' And that's okay because then it's like, "Okay, I get that and I will do that the next time." But I don't want that to take away from the message either that can often be missed if we are unwilling to put ourselves out there. And that's why we all have platforms because we're willing to put ourselves out there and talk about stuff that a lot of people shy away from. REBECCA MINOR: Absolutely, yeah, and I think the more self-disclosure I've done online, in appropriate and boundaried ways, for the therapists listening, has, like you said, right? Has shocked me in its traction, right? It's the stuff where I'm like, "Oh, this is what the people want." That gets like nothing. But when I'm like, "Look, I'm messy just like you." People are like, "Awesome." And it's like shared all over the place, right? Or recently, in terms of unpacking identity and Megan Anna, you and I have talked about this as the reality of moving through the world as a queer person who holds a lot of privilege because I'm married to a cis man and how navigating that has been tricky and interesting. And so, I was so afraid of sharing about that and losing some of my queer followers who would be like, "You're another one of those, like next." And I forgot, or, you know, wasn't prioritizing the thousands of people who have reached out, and liked, and commented when I've shared like, "Hey, this is actually what my life looks like." And just in the last month I have like, built this small but growing community of women who are in straight passing relationships and navigating their queerness. And it's just been really fascinating to see. But I think I absolutely get stuck in that feedback loop of like, I was doing it yesterday with a post where I was like, writing about protected time. And then I was like, all I could hear was people being like, "Oh, nice that you have protected time, what a privilege?" You know, and then I archived the post because I was like, "Urrgh." So, yeah, it's… MEGAN NEFF: Yeah, I love that. I've definitely been there, done that. First of all, I just want to say, I love how you have, like, talked so openly about the complexity around queer identity. And how, yeah, like our marriage setup or partnership setup doesn't make an identity. And that was actually really empowering for me. I also remember, we talked the weekend before you made the post of like, kind of, revealing that you were married to a cis man. And I remember the anxiety of that. And I totally understood that. But I love how you have come into that space. That's actually partly what gave me permission because it was that question of like, okay, I am queer, our family is very queer as like, but I'm also like, not in a queer partnership. So, what do I do with that? And so, the work you've done around identity, I think, is so helpful because identity is so much bigger than the structure of our partnerships. REBECCA MINOR: Absolutely. Yeah, thank you. MEGAN NEFF: Should we shift to talk about identity and kind of gender queer identity and neuro queer identity? I know that we've done a lot of work at that intersection. And I wonder if it'd be helpful to do some of, like, a bird's eye view of some of the things that we discovered when we were asking our audience and what we've presented on, the speaker time to shift. REBECCA MINOR: Sounds good to me. MEGAN NEFF: Rebecca, do you want to do the bird eye view? Like… REBECCA MINOR: Oh, I feel like you're better at that? MEGAN NEFF: …intersection. What did you say? REBECCA MINOR: I said, "Oh, I feel like you're better at that." MEGAN NEFF: Okay, I will try and then, you will [CROSSTALK 00:23:30]. REBECCA MINOR: … yeah. MEGAN NEFF: Yeah, so, okay. So, I mean, we know that there's a huge overlap of queerness and neurodivergence, both for autism and ADHD. It's a little bit more pronounced in autism than ADHD. So, first of all, talking about sexual queerness. There's one study, and as a disclaimer, it was a smaller study, but the study found that 70% of autistic people identified as non-heterosexual. And the language non-heterosexual they use that because it also included people who were asexual and [INDISCERNIBLE 00:24:12]. But essentially, 70% identified as some form of queer. That's huge. The research also found it's more common among people assigned female at birth. So, cis autistic men. So, people like you, Patrick, are more likely to identify as heteronormative and heterosexual than everyone else. So, this gets, I think even more pronounced when we start looking at gender queerness, and particularly, autism, but also, ADHD. There's a pretty big study done in 2021 that found that gender queer people were three to six times more likely to be diagnosed as autistic than cisgender adults. What's really interesting about that statistic is that only include people who are medically diagnosed, and so, we would suspect that number would actually be significantly higher. Other studies have found that autistic children are like four times more likely than allistic children to be genderqueer. There's other studies out there, I'll link the infographic in our podcast so people can go see the research. But essentially, it's a significant overlap between gender queerness and neurodivergence, particularly, autism and ADHD. We also see similar rates in ADHD not quite as high but also, higher than in neurotypical children and adults. That's the bird eye view. How did I do Rebecca? REBECCA MINOR: That was good. It just made me think do you have like a gut instinct as to why that is? MEGAN NEFF: Oh, gosh, I get that question so often. And I've heard some really interesting speculations. I think there are some studies around like, neuroanatomy, but I don't know those well enough to try and say at the moment. I think the idea of like, how we relate to social norms, I think is part of it. I think we're much more, you know, social norms are constructs, and I think we see them as constructs. I think- REBECCA MINOR: That's always been my thought, too. MEGAN NEFF: Yeah. So, I think we know they're there. But like I described as like, I analytically know they're there. I think RSD people experience them. Like, they experience the social norms as real things. So, I think we're much more likely to queer in the sense of query and social norms and explore. I heard a really interesting theory, recently, about sensory. Because of heightened sensory someone was experiencing gender dysphoria, particularly. That would be a more intense experience because of the body experience around that, which, that was really interesting to me as well. There's a few other kind of ideas out there, but I don't know, what about you? What do you make of the overlap? REBECCA MINOR: Well, I just, I mean, so often I think about gender, the whole concept of the binary as being its own construct, and if you're not led to constructs and you feel somewhat of a freedom to move in or out of them, it might give people an opportunity to consider possibility, right? Like, so often, I feel like when I work with people who are cisgender and allistic they've never considered any other possibilities around their gender. They're just like, "Oh, well, this is what I got handed and this is what I still am." And like, it's never been called into question, not even know, like, passing thought. Whereas, you know, obviously, I spend a bulk of my time talking with trans and gender-expansive folks, but I mean, I talk to anyone who will talk to me about gender, which also made me be like, "Oh, is that a special interest? Are people a special interest?" Like, because I've been so, so social my whole life. But anyway, sidebar. MEGAN NEFF: For sure autistics exist. REBECCA MINOR: And I know you told me that. And I still need to read that like, lipstick… I don't remember the name of that book, but like outgoing one. MEGAN NEFF: Yes, I also forget the name of the book. But yeah, she is like a very extroverted autistic. REBECCA MINOR: Yeah. But I think just being even curious enough to consider otherwise feels more available to folks who are neurodivergent. Like, they're like, "Well, I just want to see what's over here, or like, try this on, and see how that feels." And just a willingness to play, I think that feels different. MEGAN NEFF: I love that, a willingness to play. There's the soundbite now that… I'm looking at you Patrick like you maybe have a thought, but I can't tell if you do. PATRICK CASALE: I like that we all… it feels like this is set up, though, like everyone has a thought at the same time was what my experience was just happening. Like, I was looking at Megan's face, I was looking at your face, Rebecca, and I was also thinking. So, I didn't have words to put into my thoughts. I honestly agree with everything you're saying. So, I'm just nodding, and like thinking, and just thinking about things differently because as someone who honestly, has never really questioned my gender or identity, honestly, I always am curious about that in general, because I'm like, I'm just processing what you're both saying right now. I'm like, this was Megan, your stat about what you say 70% of cishet autistic men don't ever question or did I get that wrong? MEGAN NEFF: Oh, it's 70% of autistic people identified as non-heterosexual. But like the most likely autistic population to identify as heterosexual are cis men. PATRICK CASALE: Yeah, that's what I was thinking about. And I was like, "Huh, this in interesting." MEGAN NEFF: So, the autistic stereotype, yeah. PATRICK CASALE: Sure, yeah. So, that's where my brain went. But then I was thinking, like, it makes a lot of sense about just playfulness and curiosity, and being willing to break out of construct, and just being like, "Yeah, this is fucking stupid. Like, who told us we were supposed to live this way?" I think that makes a lot of sense in all areas when I'm thinking about a lot of just neurodivergent people, in general. REBECCA MINOR: Absolutely. And I think Megan Anna and I are great examples of the way in which that can happen and in various orders for folks, right? Like, a lot of times people will realize one of these things, and then it frees them up to realize another. MEGAN NEFF: I did a story on my Instagram, but then the results didn't show. I don't think I am, like, enough tech savvy to try to do, like, polls on my Instagram stories and show results, which is ridiculous, but- REBECCA MINOR: I can help you. MEGAN NEFF: Thank you, I need help. But the poll I did was like if one identity discovery led to the other which identity came first? And so, was it the queer identity? And did that lead to a neurodivergent discovery or vice versa? And the results in the comments were really interesting. I really wish I knew how to show them better in a way that people could see them. But yeah, I see that all the time, where often discovery of one will open the door to the discovery of another. PATRICK CASALE: Yeah, and I think that- REBECCA MINOR: [CROSSTALK 00:33:02] language? PATRICK CASALE: Sorry. REBECCA MINOR: No, it's okay. I was saying I think that even about language and pronouns, right? Like, the idea that someone could use they/them pronouns doesn't often feel available to folks who feel really bound by linguistic rules, which can get really tricky for folks who are navigating gender expansive identity, and also, autistic, depending on kind of how their autism shows up, right? For some people, they're like, "I can dance around some of these rules." And other people are so bound by those rules. And so, it can get tricky. PATRICK CASALE: Right, yeah. I agree with that. What I was thinking, Megan, about your poll, do you think that any of this has to do with the fact that regardless of which "identity" comes first, or is discovered first, that it just feels freeing to have it discovered and see the world through a completely different lens? Because so many of us, and I cannot speak for any of the queer identity perspective, but so many of us who are neurodivergent, who are seeking something all of our lives, and seeking like this landing place, and this place to just feel home, I'm using a lot of air quotes right now as if we don't record the video, feels freeing in a lot of ways. And I think that's just where my mind goes when you start to think about like, where does that one go, lead into another perspective, or identity, or realization, or aha moment? REBECCA MINOR: I think that's a similar experience for folks who come out later in life too, of there's been this long-standing like, "Something's not quite fitting here. Like, why do I feel just a little bit different?" And you know, people who then in their 30s, 40s, but you know, whatever we're considering later in life diagnosed then recognize like, "Oh, maybe that's what it is." And I think I see that fascinating. I'm fully side-baring now, so feel free to cut this. But I see that happening with people who are also recognizing… either finding out their autistic later because of their own child being diagnosed, and then having that aha, or for parents whose kids come out, and then they're like, "Oh, that's actually something that I never thought about for myself." And really kind of pull back the curtain on that and get to explore like, and that's where I see, whether it's people who are exploring their neurodivergence, or their gender identity, I see it as an opportunity for the whole family and everyone in their lives, really, to get curious about the ways in which that might be showing up for them too. MEGAN NEFF: I have certainly lived that, where I think the first person to come out in my, like, extended family was one of my children at a youngish age. And then, like, that just kind of, yeah, it's like it opened up a conversation that wasn't a conversation before. And not just in our immediate family, but like beyond that. And it makes me so proud of these kids who, like, are owning who they are, and then, like, empowering the adults to do that. And like, I'm cringing as I say that because it sounds kind of like parentified to be like, the kids are empowering the adults. But I also think there's like generational movements and pieces in there, where a lot of us just grew up, especially, if we grew up religious, in spaces where, like, it just, like, how comfortably my family, like, with our kids, we talk about queerness, and we talk about identity, and like the fact that from a young age, we never defaulted to like, "When you grow up and marry a man." It was like, "When you grow up and have a partner." Like, that just wasn't accessible to so many of us who are in our 30s, and 40s, and beyond. REBECCA MINOR: Absolutely not. Yeah, and adding the religious piece is a whole other element of that, which you and I have talked about, too, of like, part of why I am so comfortable talking about gender and sexuality is I never got that messaging. Like, sex was talked about in a really positive, just normal, kind of, like, it's okay to mention it at the dinner table kind of attitude, which is baffling to other people. And so, I think, yeah, there are real shifts happening generationally, which is like, what we really want to see, right? I feel like that's my, like, life's work is, is working towards that generational change where kids can be exactly who they are and we all need to catch up. PATRICK CASALE: That is a really good point that you both made. But that's exactly what I was saying before in terms of advocacy and having an audience because when we're talking about movements, that's where this stuff comes from is advocacy efforts from people who are willing to show up and share their own stories. And my brain is diverging because Rebecca, you mentioned something before about like, not wanting to post the messy side of life, but then those are the things people are always like, "Oh, yeah, that's exactly what I need." It's just because as people, I just think we're wired for connection, and we want relatability, and we want to know that we're not alone. So, that's the content, too. That's like, you throw something up there, you don't perfect it, and you're just like, yeah, take a glimpse at like what this is like for me on a day-to-day and people are like, "Holy shit, this is my life too." MEGAN NEFF: And I think it adds a layer when we're therapists. I can't remember the name, but there's a New York Times bestseller a few years back now of a therapist who is maybe one of the first to like, the book is about her own mental health. And it was a really a breakthrough moment of like therapists talking about their imperfections because in traditional therapy, it's like you go to the therapist, they're supposed to have it all together, all figured out. But I think people are really responding to… it makes us more human as therapists if, you know, we also have messy kitchens, we also are in process around identities. Now, we know how to contain that, we now have boundaries so that like what's coming into that therapeutic space is intentional. But there's something really powerful that I've seen happening in the last five years, particularly, where therapists are becoming more humanized. PATRICK CASALE: Yeah. REBECCA MINOR: And I think it had to happen. Like, the model of the blank slate, like, barely says anything just like furiously takes notes therapist doesn't work for people. It certainly wouldn't work for my clients. MEGAN NEFF: Particularly, not neurodivergent clients or many queer clients. REBECCA MINOR: No. MEGAN NEFF: It doesn't create safety. REBECCA MINOR: No. And now when I think about retention, I'm like, "Oh, no wonder people are still here." Because like, you can see what's all over my face all the time. Like, there's no… it was feedback I got in grad school, right? Like, you should tone it down. And like, the thing that the feedback I get from clients is like, it's so comforting to me because I always know what you're thinking, or how you're responding to something, or like that you're with me. And it's not intentional, it's just my face. PATRICK CASALE: Yeah, if it wasn't your face it would be a lot of effort and energy into masking that expression or that reaction. REBECCA MINOR: Right, right. PATRICK CASALE: And I think clients, they really resonate with that of like, "Oh, my God." Like, my wife will sometimes tell me I need to fix my face because my reactions are my reactions. And she's like, "Don't react that way in this environment." I'm like, "Ooh." But in the therapy room, it's really helpful, it's really therapeutic because like, it takes away from that guessing game that clients sometimes have to play of like, that [INDISCERNIBLE 00:41:24] the way I needed it to, "Are you taken aback by what I said? Are you uncomfortable with what I just told you?" And I like the new era of psychotherapy that we're moving into a blank relatability because I strongly believe this. And I say this all the freaking time that relatability is accessibility. And I believe that wholeheartedly. REBECCA MINOR: I like that. PATRICK CASALE: And on our webpage for our group practice says like, "No head nodding, how does it make you feel? We're therapists here?" And like, we get so many calls from people who are like, "Yeah, you're our people." And my marketing person last year, when we were creating the website was like, "You're going to turn off a lot of clients who are uncomfortable with using the F-bomb and saying it this way." And I'm like, "Good, those are not our clients anyway, we don't want those people to call us." REBECCA MINOR: Right, yeah, that's not your fit. Absolutely. I love that you say no head nodding, how does that make you feel? Because that's the thing, right? Like, that's why people don't want to go to therapy. I hated therapy, initially, when I was forced to go as a child. And like, that poor woman, she tried to have me do art therapy and I scribbled with a black marker all over a piece of paper and was like, [CROSSTALK 00:42:36]- PATRICK CASALE: [CROSSTALK 00:42:40]. REBECCA MINOR: Yeah. MEGAN NEFF: That's sassy. I love it. REBECCA MINOR: Was very sassy. She called my mom in and was like, "I'm not sure that this is going to work." PATRICK CASALE: We can't fix her. But what happened to me early on in similar environments is like, the sterile nature of like, how can I ever open up, and be myself, and feel comfortable enough to actually share what's happening for me if it's just sterile, and it's just head nodding, and there's no response. And, you know, I just struggled with that so much growing up as someone who has been in and out of therapy since I was five, and just the reality and realization of like, you can be the best therapist in the world clinically, and use every technique and intervention under the sun, but if there's no relatability, and no ability to build relationship, rapport, and connection, I'm not even listening to you. Like, I'm already thinking about when I leave this place, I'm never coming back here. And that's just the reality. REBECCA MINOR: Yeah. I just had a question pop into my head as you were sharing that and I don't know if it feels okay to go here or not. But again, feel free to skip this. But I just wonder what it was like for you having been in and out of therapy since five to not be diagnosed for another 30 years? PATRICK CASALE: Well, to answer your first question first, which is, is it okay to go there? And we encourage all the divergent pathways on this podcast. So, absolutely. I think there's two answers here. I'm doing this [INDISCERNIBLE 00:44:12] Jesus. But there are two answers, right? Like, there's the answer here of me sitting here today who can like zoom out, look at life, and be like, "Wow, that was really hard." And then there's the answer of like, if I can drop into that life at five and onwards, it was really hard, which is what made me seek out diagnosis because I kept, I've told Megan this a million times, I was seeking that like, "What the fuck is happening?" Like, why is this happening to me? Like, why do I feel every second of every day, of every experience, and every situation so intensely? Why is it so hard for me to connect? Like, all of the questions that we ask ourselves, that has been constant for 35 years of life? So, I think it's also this… And I've said this publicly, too, and I know my parents listen to this podcast, but there's almost this, and I think, for a lot of people who are my age, and in this age group who were not diagnosed until later on in life were like, "What the hell is happening here? Like, where did this get missed?" And my mom's response, initially, to my diagnosis was like, "Well, that wasn't my experience of how your childhood was. You were really social and you really do not stop centering, right? Like, let's make it more about what's happening today. Here's the information that I'm sharing with you." But that's what it was. And my mom was an LCSW in private practice, like, how do these things get missed? And I think it's because my parents are divorced, have been divorced since I was five, very messy stuff. I spent a lot of time alone. A lot of times they'll see that I played soccer. I was like, that's what I was supposed to do. And that's just how reality was for me. And I think to sum up your question, the answer is hard, but in different ways. Like, hard now cognitively, to think about it from a therapeutic perspective and as someone who's done a lot of work, and then, hard as like, "Damn, it was really hard just existing." REBECCA MINOR: Yeah, yeah. Thank you for sharing that. I think, as part of my searching for answers, I went and reviewed some of my report cards. And was like, "Hello." Like, it felt so clear. It's like she's so chatty, like, really smart, getting stuff done, but like real peaks and valleys of like, gravely struggling in some subjects, and like, off the charts in others. But again, there are just so many questions where I'm like, "Where were the grownups?" Like, and it's also what information they have, right? Like, I wasn't a boy who was obsessed with trans. Or I wasn't my sibling who was assigned male at birth, who did get an ADHD diagnosis. So, you know, there are a lot of factors at play. But I just think about that, like, holding that reality of having been in various care settings for so long and still feeling like this didn't get picked up. MEGAN NEFF: Diversion two now, but that reminds me… There's an interesting emotional experience that happens and I don't know your sibling, if this tracks, but an example of let's say one child has like level two or level three autism or what would be, I guess, I hear clinicians talk about like more severe ADHD. I don't obviously like that language, but like, more impacted, more evident ADHD, when that child gets diagnosed, the child that perhaps maybe they're level one autism, or maybe they internalize, that sibling often gets missed because so much of the resources is going to the child who's struggling more. Like, that's a unique experience as a sibling. And then when that sibling later in life discovers this identity, I have seen that be a really complex experience of like, the word misattunement comes to mind, like when you're asking Patrick about, yes, 30 years of therapy, especially, 30 years in misattunement when we're discovering that much of our life was happening in this context of misattunement, either from therapists or from our families, that's painful. REBECCA MINOR: Yeah. And much like Patrick, I had, you know, the context of very messy divorce and a whole… You know, there were so many things happening, that it wasn't the focal point. And I was doing well in school. So, it just didn't really matter because there weren't, you know, and I didn't have behavioral issues besides being chatty. MEGAN NEFF: Did you have mental health issues. REBECCA MINOR: Oh, yeah. Oh, yeah. MEGAN NEFF: Right, that's the classic story, right? Like, we internalize. REBECCA MINOR: I am like the queen of having a panic attack in the bathroom and coming back to class and looking like everything's fine. So, yeah, totally, it came out in other ways and physical ways too that I'm now tracking. I'm like, "Oh, it's not normal for eight-year-olds to have migraines." Or like, you know, so consistently. Or other, you know, various stomach stuff like GI is so often connected to. I missed so much high school for like, what no one could figure out GI symptoms. They were just like, "Take some Prilosec, good luck." But it wasn't until I started managing my anxiety better that, that made sense, right? So, yeah, there's so many… I think misattunement is a useful frame for that. And I think feels really validating to think about it through that lens. And I also have a mother who's a LICSW. MEGAN NEFF: Wait, and I have a dad who's a psychologist. REBECCA MINOR: Oh, wow. MEGAN NEFF: [CROSSTALK 00:50:34] like family systems was that we all became. Fascinating. REBECCA MINOR: It is fascinating. And it's been fascinating to unpack some of that too. Like being, like, it's not just my sibling to have it, but like I have it, and also, like, mom, you might have it too. PATRICK CASALE: Absolutely, those are good conversations to have when you're able to have them. I was telling Megan that I had one with my dad while I took him to Spain for his birthday a couple of months ago. And I was like, we're drinking, which I knew this conversation was going to come from that. But I was like, "Yeah, so I don't know, if you've been listening to my podcast. I'm autistic, you've never asked me about it. I think you're autistic too. And here are all the reasons why I think you're autistic." And instead of, like, this rebuttal or reaction, just like, "Yeah, that makes sense." And I was like, "I don't know what to do with this information now." I was expecting a very different conversation. But this is why I like and I've talked about this on here too, like, IFS work and re-parenting work, and inner child work so much because even though it's still a struggle for me when my therapist is like, "What would you do with five-year-old Patrick? And how would you comfort him?" And I'm like, "I don't fucking know. I have no idea how to answer that." But the parts work and the ability to piece that together, and like stress it out, and like look at it from a million different perspectives is super useful for me. And it's honestly, the first modality that I've been like, yeah, this is my jam. Like, everything else I don't care about anymore. This is the only way I'll do therapy going forward. REBECCA MINOR: Same. MEGAN NEFF: That's true. REBECCA MINOR: I do like EMDR, but IFS… MEGAN NEFF: Oh, yeah, you do EMDR, don't you? REBECCA MINOR: Yeah, not as much anymore, but it was useful. MEGAN NEFF: I'm feeling a collective like, is this our collective conversations coming to an end? Or is this a collective-like, sigh of the heaviness of what we've just been talking about? What is this energy I'm feeling? REBECCA MINOR: It felt more like the latter to me. MEGAN NEFF: Yeah, yeah. Me too. PATRICK CASALE: Yes, me too. Yeah, I actually feel like we could have this like a five-hour podcast episode right now, which feels really good. It feels like it's been a good conversation. I have no idea how long we've been talking. So, to everyone listening, if you're still listening, we appreciate it. We've been talking for over an hour. So, I think we can continue on, I think we can do a lot of different things right now. MEGAN NEFF: Rebecca, do you have a hard stop at 1:00 your time? Okay. REBECCA MINOR: I do. I actually for one of the very first times in my life, I put a buffer between this and my next. Actually, I'm going to be on another podcast. I'm having a podcast day. But now that's something that I'm learning to do for myself. It's been really hard, and it's still hard. But I am trying to put space between things and not push myself past my limits. It's really revolutionary. MEGAN NEFF: I'm going to check in on you on that in like a month. I'm going to be like, "How are the buffers?" Because, yeah, I've noticed that about your schedule. REBECCA MINOR: Right, yeah, yeah. And while we're on an IFS kick, I explored that kind of urgency in IFS and that's been really interesting working with that, and also, like, as a legacy burden, that something that we inherit, but also, how much of that has to do with my neurodivergence and that I have so many ideas, and I'm afraid I'll lose something or something's falling through the cracks, or I'll forget if I don't hurry and do it right now. Or I'm like, "Oh, I need to empty the dishwasher." And then, I'm halfway through that when something else comes up, and yeah. PATRICK CASALE: [CROSSTALK 00:54:55] head nodding right now. MEGAN NEFF: Yeah, like the inability to trust my energy. And what I mean by that. So, like, if I have an interest in a project, I have to pounce, even if it means I'm staying up to 1:00 and I'm not doing any of the sleep hygiene stuff I always talk about because it's, I don't know that this interest, therefore, this energy will be reliable and available to me tomorrow. So, there is that like, sense of urgency because I don't trust my mind or I don't trust my energy. And that's it. Like, that's a hard aspect of being ADHD is the difficulty trusting will my mind hold this? Will my energy be there? Will my interest be there? And not being able to predict therefore schedule. I think that's why non-ADHDers when they're like, "Let's do a planner, and let's schedule." What they don't realize of part of why that's so hard for the ADHD brain not just breaking up tasks, but like, I don't know what kind of energy I'm going to wake up with on to Wednesday. So, how do I schedule out? Like, am I going to have a lot of cognitive energy, but not much body energy, or flipped? Yeah. REBECCA MINOR: Did your camera just move? MEGAN NEFF: It did, yes. When I do hand motions it moves. REBECCA MINOR: It's not making things up. MEGAN NEFF: No, that happened. PATRICK CASALE: Now, it feels like we're in an ending place. That's at least how I'm picking up on what we're experiencing. REBECCA MINOR: You know, what I realized, though? We never talked about the thing we said we were going to talk about, with like the polls and stuff, which we don't need to. MEGAN NEFF: Oh, like getting into the detailed experience of when these identities intersect. Yeah, yeah, we can link to our masterclass that we have where we do like, and I think that's probably better because that's more of a kind of content lecture-based presentation. And it's probably, a more helpful way to absorb all that kind of high-up information. But yeah, basically, when the identities intersect, it's really complicated. It complicates both identities. You and I have talked about that a lot from like, sensory to executive functioning, to navigating medical systems. And yes, we have a whole masterclass, it's an hour-long that's available. Oh, we should make a coupon code for people who listened so they can get it at a lower rate? I'll do that. And we'll put it in the notes. But is there anything that we didn't talk about around the intersection that you feel like is important? REBECCA MINOR: I think probably just acknowledging that some of the challenges will be a little bit different. And to try your best, as hard as it can be to find a provider who will understand both of those experiences, which is tricky. MEGAN NEFF: It's tricky. REBECCA MINOR: And if not, you made that helpful flowchart of kind of like, which one is harder right now? And focusing on that. Like, if it feels like the autism is like the key piece, then find someone who really knows their stuff about autism, and hopefully, is decent about gender. And kind of fill in the gaps where you can and vice versa because there aren't a lot of us who are, you know, equally is hyper fixated on this intersection. MEGAN NEFF: Oh, sorry. REBECCA MINOR: No, go ahead. MEGAN NEFF: I was just going to say we should also do a shout-out to FINN's work. We're both Finn's consultation group, Finn Gratton. They have Supporting Autistic Youth, I think is the title. I have it back here. I'll link that in the show notes as well. But that's for clinicians listening, please go buy that book. It's amazing. And I think also for parents, it's a great resource. And even for individuals. I think it's a really validating read. It's more intended for parents and therapists, but I think for individuals it's also a great read. So, there are some wonderful resources available at this intersection. And we will point to some of those. REBECCA MINOR: Yeah, and I think it's a danger to assume that you're never going to need to know that or it's not your population that you work with. Like, I didn't focus a lot on autism because I was like, "I'm in the gender world." And then I was like, "Wait a minute, you literally cannot be in the gender world without also understanding autism." MEGAN NEFF: And same ways you cannot be working with neurodivergent clients and not understand gender queerness, yeah, yeah. REBECCA MINOR: And that's one thing that's also been really nice with the parent coaching is being able to work with parents who are navigating both of those pieces and they do present with different concerns around their kid less so like, are they really trans or do they really know? But more just that, I think they've been very hands-on parents a lot of the time because what's often- MEGAN NEFF: Often the neurodivergence, yeah, absolutely, yeah. REBECCA MINOR: So, that, and like that kind of like autism mom trope, and like, needing to be on top of every detail, and like, it really blindsides them because they're like, "No, I know, my kid and I know what they need." And navigating that combination can be really tricky and… MEGAN NEFF: Especially, medically because medical providers might see that and be like, "Is the parent pushing this kid's identity piece? The kid needs to be more involved." But maybe the child cannot speak in those medical settings, maybe. And so, the parent often becomes more of an advocate, and that gets complicated when navigating gender affirming medical care. REBECCA MINOR: Absolutely. MEGAN NEFF: Yeah. REBECCA MINOR: It's really pieces too of like, "Oh, well, they're saying they want us to call them this new name and these new pronouns, but they're not changing their clothes." I'm like, "Well, have you considered that those are the clothes that are familiar, and they're comfortable, and that…" Like, frankly, a lot of what we consider women's clothing is not comfortable. So, you know, maybe they're not wanting to like shimmy themselves into something that's so tight they can't breathe. And that's not an indicator of whether or not they're exploring their gender. So, yeah, that's what I'm happy to help people with. MEGAN NEFF: Yeah, can you share a little bit about where people can find you? I know, you've got several resources for parents. And yeah, can you share a little bit about that. REBECCA MINOR: My website is genderspecialist.com. And on there, I have a course called How to Talk to Kids About Gender, that's for all parents. It's not specific to folks who have trans or gender-expansive kids, but just if you know or care about kids, here are some helpful ways to talk about gender with them. And then, also, information about [PH 01:02:20] peer coaching, which is great because it's not bound by licensure. So, I can work with folks wherever they are. So, I've actually been able to do some of that internationally, lately, which is really cool. And otherwise, I have lots of free downloads and like a glossary of terms because there's a lot of language to learn and some basics like Now What guides of like, "Okay, so my kid just came out like… Now what?" So, I've got you covered there, and lots of blogs. And then, as you mentioned earlier, I'm also on Instagram @gender.specialist. So, yeah. MEGAN NEFF: Awesome, awesome. Thank you so much for taking the time. I know your schedule is wildly busy. So, thank you. Oh, my gosh, my voice. Thank you so much for taking the time out of your schedule to talk with us. This has been a fun conversation. REBECCA MINOR: Thank you so much. It was so nice to finally meet you, Patrick. PATRICK CASALE: Yeah, you too. This was great. So, really awesome conversation. Thank you so much for being on here. REBECCA MINOR: Thanks, guys. PATRICK CASALE: And to everyone listening to the Divergent Conversations Podcast, all of Rebecca's information will be in the show notes, links, all of the things we talked about today, and all the things that Megan mentioned, as well. And new episodes are out on every single Friday. Like, download, subscribe, and share.
Many questions around identity often come up for adults who have been masking their whole lives and discover later in life that they are Autistic. In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, answer some of the questions sent to them from podcast listeners about identity and moving forward in life after autism discovery. Top 3 reasons to listen to the entire episode: Hear answers to questions like, how do you know who you really are beyond the mask, can you still enjoy your masked life and live as your authentic self, are you defined by your autistic traits? Understand the process of self-discovery and how it can manifest for different people, as well as some ways to express your newfound identity. Learn strategies to reshape the way you structure your time, commitments, and priorities to protect your energy and live a more balanced life. The process of self-discovery and learning can be challenging. You might feel grief that can arise from losing or feeling disconnected from the masked version of your life, but you also can experience a feeling of liberation as you explore the new version of yourself, and you'll have the opportunity to understand and honor your needs. Resources What is Masking in Autism? Autistic Masking Explained (blog post): https://neurodivergentinsights.com/blog/what-is-masking-in-autism?rq=masking Autistic Masking Workbook: As a podcast listener, you can use this coupon code to enjoy a 25% discount on the individual workbook or the workbook for clinicians. For Personal Use, use coupon code: Unmasking25 here (https://neurodivergentinsights.com/neurodivergentstore/p/autistic-masking) For Clinical Use, use code: Unmasking25-Clinical here (https://neurodivergentinsights.com/neurodivergentstore/p/autistic-masking-therapy-resources) Transcript PATRICK CASALE: So, this is part two of our identity conversation. If you tuned in last week, Megan and I talked about identity from a pretty nuanced lens, both clinically, and professionally, and personally. And today, we are going to focus more on questions that came into our Divergent Conversations Instagram account and Megan's Neurodivergent Insights email. So, Megan, what you got? MEGAN NEFF: Yeah, so we got a lot of questions that came in around identity and masking or unmasking, which makes just so much sense to me based on our conversation last week about how unmasking often triggers a whole identity crisis. And then we have some other questions. So, we'll all shoot off with the first question. There's a lot of questions in it. So, I'll go ahead and read it all. But maybe we can break it apart. "So, can you please do an episode on figuring out who the real you is? I'm torn about the whole concept of unmasking because I actually love the life I have and have created while being masked. However, it's taking a huge toll on my health, anxiety, depression, and illness after illness, fatigue. How do I maintain the beautiful life I have, but still be my authentic self to model for my neurodivergent kids? How do you know who you really are?" So, there's a lot in that. Your face is like- PATRICK CASALE: That is a [INDISCERNIBLE 00:01:35] question. MEGAN NEFF: Yeah, and I mean, I think we should break it up. PATRICK CASALE: Yeah. MEGAN NEFF: I'll start with the first part of the question. And I think this is why I was drawn to this question of, like what happens when you actually really like the life you've created through your autistic mask? And I actually relate to this. You know, I have a draft of a reel from like 18 months ago. I never hit publish, which I think is interesting. But the reel I made was, basically, about how sometimes I miss my old life. And that's actually true for me. I wouldn't go back. But there was a life my mask self created I feel like I couldn't do now. Like, partly, this stamina, now that I know what it's like to live unmasked, I just want to have the stamina for it. But like the idea of having a career in academia because that was kind of the trajectory I was going. My masked self is the person who created that, or even how, like, I was a lot more social. There are things I do miss about my old life and that's complicated. PATRICK CASALE: Yeah, you have mentioned plenty of times on the podcast how your life feels kind of insulated and small, in a lot of ways, socially, especially, I think. So, I think, like, it makes so much sense to say I miss certain components of this life that I had, that I either am grieving, that I can no longer kind of withstand, or accept, or tolerate. I don't know, that's not the right word, but I think what I'm trying to say is like, there are portions of life where you're going to grieve the fact that you can no longer participate in them the way that you used to. And it makes so much sense what this person is saying about like, "I'm getting fatigued, I'm getting sick, I'm getting really burnt out, I'm getting really tired." And it's so often for so many of us becomes like one or the other. Like, you either prioritize and protect your energy, and you say I can no longer participate in A, B, C, D, E, F, G, which so many people don't want to do, and understandably so, or I continue to push myself through this life that I've created and live in. And the cost is all of the health concerns, all of the fatigue, all of the energy which can then lead to what? Substance use, struggles with, you know, just stress tolerance, struggles in relationships, struggles in the family system, etc. And I think, unfortunately, so many people have to choose one or the other. It doesn't seem like there's a good middle ground for a lot of people. MEGAN NEFF: Yeah, yeah. Well, and that probably ties back into kind of our all-or-nothing thinking patterns of… and I definitely feel like I've fell into that of like, just creating, like, I'm done. Like, I'm done with all of it, washing my hands off it. And yeah, so moderation. Like, creating a life with moderation is really hard. It's interesting, that's something Luke, my husband will say to me a lot of, like, "You just don't do moderation." Like, I do extremes and so… PATRICK CASALE: Yeah, it's one or the other, it's black and white in so many ways, which sucks because if you could find the gray, if you could come a little closer from one or the other, we could probably have more of the things that we grieve losing when we realize like, this is what I have to do in order to survive or protect my energy or capacity. This is going to be a divergent moment, and it may not make a lot of sense, and I hope that it will. I've openly talked about my history of gambling addiction. For a lot of people who go through recovery and sustained recovery, there is grief of your old life, there is a grief process of the people you used to spend time with, the places you used to go, the rituals, the activities, the familiarities because it becomes so deeply ingrained and embedded in terms of like, expectation, what to look forward to, familiarity, comfortability, et cetera, and it becomes routine, and it becomes habitual. And it's so hard because you grieve even though you know how painful, and devastating, and negative it is for you, you still grieve it anyway. And I almost associate the two in some ways of like, grieving the unmasked version of you after you've created this masked version of your life that you do enjoy in a lot of ways and areas. MEGAN NEFF: I love that. First of all, I think that actually connects really well. And I appreciate you sharing that about kind of grieving. I haven't heard that language before, but I really liked that, that resonates. But, oh, yeah, grieving the masked self. I think I sometimes talk about, like, bearing the masked self. Like, before we can truly address our internalized ableism and live into ourselves, we have to bury our masked self, we have to grieve who we, I guess, part of us wanted to be, right? Like, part of me absolutely wanted to be that mask, this kind of academic, someone who's comfortable with public speaking, like, who can go to conferences with ease. Like, I wanted to be that version of me, part of me did. So, absolutely, there has been grief. While there's been liberation, there's also been grief. And I would say, I hold the liberation in one hand and the grief in the other hand throughout this process. PATRICK CASALE: That's so well said. And I agree 100% that I grieve the masked version of me who was like really social, and outgoing, and could go to lots of networking events within my community because I love connecting with people. I just have had to really change the way I connect and which venues in which capacities. And again, we've said this so many times, and people keep asking for it, but I had to rely on alcohol to live a masked version of myself, to be able to show up socially, to be able to network, to be able to go to these events every night of the week. I had to rely on substance use to sustain my abilities to show up. And then, the other side of the coin is everything that comes with that in terms of, you know, sleep deprivation, depression, anxiety, dependency, all the things, and it just becomes too much. So, I do agree with this grief liberation, holding them in both hands of like, and we've talked about this a million times. Like, grieving just like what you thought you could have accomplished, or done as a child, or a teenager, or young adult. Like, what you romanticized about, like, your life becoming and looking like. MEGAN NEFF: One thing I appreciate about what you just said, it kind of was like a reality shake for me. I think, I'm almost three years out, like, especially, as I get more distanced from my old life, and for me, like, old life, new life, like 2020, like the pandemic was a really concrete marker of old life, new life. I think there's a tendency to idealize my old life a little bit of like, what I was capable of, what life was like, but if I really go back, the reality was, yes, I could go to conferences with more ease. Right now I think a conference would totally overwhelm me. And it would be a struggle. So, there were things I could do that I would come home and I would crash. And I was not a very present mother. And I would come home from a social situation, and that's when I would drink. I also struggled with alcohol in the past when I was masking more and I didn't have language for it, but I was trying to self-soothe from the sensory overwhelm. So, after a sensory-rich day, which was five days a week, I would be overstimulated, I'd be so fatigued, I'd be misusing alcohol. And it actually is easy for me to forget those pieces when I can get into a headspace where I'm idealizing what I… It's interesting, the language I'm using, I don't know if I agree with it is what I used to be capable of. I'm putting air quotes around that. But I think that's the narrative that sometimes comes on from me of like, I used to do things that now feel really, really hard for me to do. And I'm not sure how much it's because I'm more self-aware of my body now and how much… Like, if I've just kind of lost the conditioning to survive these terrible things. But yeah, that was a lot of complicated thoughts thrown at you, Patrick. PATRICK CASALE: It's interesting, you know, like, we've been on episodes, or I feel like my brain is just not processing well, and I'm very slow to pick up on what we're talking about. And right now it's like, supercharged. So, I just picked up on everything you said, and I have so many responses to what you said. So, I'm trying to, like, collect myself. But I think almost what I'm hearing you say is like, there's this grief of like, "Capable of." Or what it used to look like. But I think that your liberation side is like, this understanding of like, look at this life you've created by not participating in what you used to feel really energized by and "Capable of." MEGAN NEFF: Yeah, yeah, like I feel much more aligned with myself because of long… and long COVID is just a huge factor. I imagine if that wasn't a factor and I'd feel a ton better, but I do struggle less. I still struggle with fatigue, but less than I did. I'm able to live an alcohol-free life like, and that was something that was really hard to do in my old life. I don't even know what I was answering but… PATRICK CASALE: This liberation that you now experience because if you draw that line in the sand of like, COVID, 2020, this is when life has really shifted for me. What I've also heard you talk about very publicly is how you show up as a mother, how you show up as a partner, what you've been able to create in your business, how you've been able to show up in terms of advocacy effort, and I wonder if that ever happens if COVID won. One, COVID doesn't happen. Two, if you're still in academia, and like going to conferences, and like pushing yourself so damn hard all the time. I imagine this version of you isn't here and it's a [CROSSTALK 00:13:06] itself. MEGAN NEFF: Yeah, and I think the price, it's interesting, this is the first time I'm putting this in words. I think the price where I really would have paid the most is in my parenting and in my health. If I- PATRICK CASALE: Absolutely. MEGAN NEFF: …kept, yeah, yeah. PATRICK CASALE: So, that is a very, very, very elongated response to that question that was just asked by that person on your email. MEGAN NEFF: Yeah. Well, and you know, a lot of these questions can kind of become a springboard to diverge into conversations. PATRICK CASALE: Yeah. So, we appreciate that question very much. MEGAN NEFF: Yeah. And then the second part was about maintaining the beautiful life and living authentically. I think that's finding the Goldilocks of moderation, which good luck with that. If you figure it out, come tell us how to do it. PATRICK CASALE: I think that's what we're all seeking, right? Is like, how do I maintain this thing that feels so elusive to me yet with the complete understanding that I cannot sustain this in this capacity? MEGAN NEFF: Yeah, yeah. And that's what actually pacing systems, and I know Mel, I don't think they talked about it on the podcast, they were on, but on their website, and Mel was the autistic physician. I know they also talk about pacing systems. I talk about pacing systems a lot too. I think finding a pacing system and there's a lot of different kinds. I have three that I talk about a lot, spoon theory, the traffic light system, and then energy accounting, using a pacing system to help pace your energy expenditure. It's good for anyone with chronic illness, but it's also really helpful for neurodivergent people, and that can help with the moderation. So, I would throw pacing systems into the recommendations there. PATRICK CASALE: I'm going to throw my two cents on top of that, if that's okay. MEGAN NEFF: Of course. PATRICK CASALE: I think that what Megan and I said, black and white thinking, right? Especially, concrete thinking, even if you're able to, if you want to maintain some portion of this existence in this life, it's about, like, picking and choosing the moments that are important to you, picking and choosing the things that you want to put your energy into, which is exactly what Megan's saying in terms of pacing systems. But really, that's how I would envision it and conceptualize it is like, if I took a step back and examine life for what it is right now, what are the places that I can put my energy into knowing that it still gives me a return? Versus like saying yes to everything, people pleasing, showing up to every event, showing up to every social obligation. I don't think that's going to work very well. I think that just continues to perpetuate the burnout, the depression, the fatigue, the anxiety, so… MEGAN NEFF: Absolutely. That reminds me of another exercise. I used to use this a lot when I worked in healthcare settings with people. It's called a value compass. And if you think about like, 10 boxes, and it's got different kind of domains of your life. So, maybe family, parenting, partnership, school, work, spirituality, physical health, like different domains, and then you rank on a one to 10 scale, how high of a value is it? And then you go back, and you rank how much effort are you putting into it, and then you look for gaps. So, let's say, work is a three value for you, but you're putting in 10 effort. That's a big gap. If parenting is like a 10 value, but you're putting in two effort, that's a big gap. Your quality of life is going to be lower if we're not expending our energy where our values are. So, the life compass, kind of value map, overlaying that on top of a pacing system, in my mind is like the ideal path for figuring out this moderation piece. PATRICK CASALE: I agree, 100%. MEGAN NEFF: Okay, our next question, "How can you find your own identity/personality after late diagnosis and constant high masking?" I've got thoughts, but I'll let you first go, if you have thoughts. PATRICK CASALE: My thoughts were going to be that you have thoughts. I was going to say in our first episode you kind of alluded to this with your first step of your workbook that you have. So, I don't know if you want to elaborate on that because I think that's maybe where you're going to go anyway. MEGAN NEFF: You have read my energy, or are in my mind. Yeah, pleasure and play, which is where we left off in the last episode, I think. Chase your pleasure with curiosity because… and that gets back to when we mask, we are typically cueing into the experiences of the people around us. And then that is informing how we're going to show up. And so, that can mess with like, knowing what our preferences are, knowing what our desires are, knowing what brings us joy, what brings us delight, what we don't like. Secondly, a lot of us respond to the over stimulation through dissociating from our body, which again, dissociates us from pleasure. And so, starting with following your pleasure and your interests, I think are really concrete and powerful ways to start exploring your identity. PATRICK CASALE: Yep, that was basically what I was going to say. So, great answer. MEGAN NEFF: So, basically, go back and listen to the last episode if you have that question. PATRICK CASALE: Yep. MEGAN NEFF: Okay, next question. This is actually pretty much the same question. "When you realize you're a head masker the question of who you are really arises, and I don't know." I actually don't have much new to add to that to that. Do you, Patrick? Kind of same... PATRICK CASALE: Same answer, same answer. MEGAN NEFF: Yeah, same answer. PATRICK CASALE: What Megan just said and just listen to our last episode. I think we broke that down pretty succinctly, so… MEGAN NEFF: Mm-hmm (affirmative.) Okay, so this is getting away from masking. So, we're diverging. I really like this question, though. "So, since my own diagnosis, things that I thought were my personality, I've since learned are probably autism, not so much ADHD because that feels separate from personality." Okay, we should just tag that piece to talk about at some point, Patrick, back to the question. "So, I had been in a bit of an identity crisis, wondering what is me and who am I? What I thought is my personality is actually autism then what is my personality? Is it my special interest? My unique combination of autistic traits? I have no answers, but this might be…" Oh. I read too far. PATRICK CASALE: It's okay. MEGAN NEFF: Okay, that's the question. PATRICK CASALE: That is such a good question. Do you have thoughts? MEGAN NEFF: No, go ahead. PATRICK CASALE: I think this is where like therapist me comes in, where it's like, "Oh, both ends." Right? Like, I think that yes, the answer to your question about like, is it my special interest? Is it my personality traits? Or is it like autistic traits, and tendencies, and characteristics? Like, yes, that is a part of your identity. And it's not all of your identity. So, that's where the complicated, like, nuanced conversation comes in, is like, yeah, a lot of your identity is going to be informed by autism because of the lens that you used before, the correct lens of seeing the world in that way, in that light. So, what are your thoughts, Megan? MEGAN NEFF: Yeah, I think like similar vein of thought of like, just because it's connected to your autism doesn't make it any less you. So, there's this thing that happened in neuroscience in the last 20, 30 years, where all of a sudden, we can see things on brain scans that we never thought we should be able to see like empathy, love, like the experience of love. And what started happening was this almost reductionistic narrative that because we can pinpoint it to brain circuits, it somehow takes away from the experience of love or empathy because we can scientifically decode it. So, once we can pinpoint the cause of something, scientifically, the temptation is to develop a reductionistic narrative around it. And I could see the same thing here, just because perhaps your social justice is driven by an autistic trait doesn't take away from the fact that that's part of you. We understand it better. So, I think what I often caution people from is falling into that trap of that reductionistic thinking that because we can understand it, it's now reduced to that. PATRICK CASALE: Right. It also brings to mind like, this is what I used to see a lot of in, and I worked in crisis units, and crisis centers, people who maybe suffer or struggle with bipolar disorder. And there's this tendency to say, "My behavior, my action is because of the bipolar disorder, right? Like, my action is because of my mania." Probably true in some instances, but not all instances. Like, so not allowing for, so often we default to that. Like, I did this thing because of this thing, I showed up this way because of this. And I think that it's really easy to then default to I only see the world and lens, or the world through this new-found autistic diagnosis. And that's something that I myself, definitely, experienced for the first year of like, discovery because you want to start looking at everything from different angles, and perspectives, and perceptions. So, I think it's quite normal for that to default to this is how I start to envision and see the world and my place in it. MEGAN NEFF: Yeah. And so, I'll share some of my personal experience with this because I actually experienced something similar post-discovery. You know, my husband and I were talking a bit about, like, our early dating and our marriage, frankly, of just like, wow, this lens kind of unlocks a lot. And one of the things I was realizing is that a lot of the reason my spouse was initially attracted to me was actually autistic traits, right? Like, I was willing to question social norms within the very fundamentalist tradition we were in. I was outspoken, and again, being an outspoken girl in fundamentalism that was something that was attractive to him, and not necessarily super common, my love of ideas and philosophy, my directness was something that my spouse was drawn to. And so, I had this moment of, does it take away? Because these are autistic traits? Does it take away from them being Megan Anna? PATRICK CASALE: Right. MEGAN NEFF: And so, was he like, does it change the narrative if it's like, well, he was drawn to me because of my autism, not me? But again, that's that reductionistic narrative of separating my autistic traits from who I am. But I do think it's a natural, it's part of the unpacking process to have these kinds of questions come up. PATRICK CASALE: Absolutely. MEGAN NEFF: Okay, I feel us diverging from this. PATRICK CASALE: Where do you want to diverge to? MEGAN NEFF: I don't know. We have the ADHD therapist question, but that gets more into therapy identity. PATRICK CASALE: Yeah, I think that because we went so in-depth on episode one of this series of just talking about identity, it's really important, again, to just be curious about these things. And I think that these questions are really common. That's one thing we want to really highlight and normalize is just the fact that, like, this is a part of the discovery process, you're going to have a lot of questions, and curiosities, and confusion when you experience a new diagnosis, especially, one that is pretty life-altering in a lot of ways. It doesn't change childhood experience, teenage years. Like, all of that stuff is still your own experience regardless of the diagnosis or not. It's just putting a newfound lens, and understanding, and perspective to life. And I think with that comes a lot of questioning. And I think that's really, really normal. MEGAN NEFF: I call it the dresser drawer. So, again, I think more on images than words. So, when I was first experiencing this, and at the point, actually, I bumped up my therapy from once weekly to twice weekly in the first three months post-discovery, and that was super helpful for me. But the metaphor I came up with to describe it to my therapist was like a dresser because what I was visually picturing was opening a dresser, like opening a drawer, unpacking it through this new lens, closing it, opening another drawer. So, like opening early child experiences, opening all past romantic relationships, opening social experiences. Like, opening different stages of our life. There's so many drawers that we're opening and sifting through, often frantically in, especially, those first few months. I remember feeling like my head was buzzing constantly. I wish I'd written more down because I was just getting like aha moment after aha moment in those first few months. PATRICK CASALE: I agree 100%. I think that's a wonderful, like way to conceptualize it through that image because I was doing the same thing. And I think I was doing the same thing. I still do the same thing from time to time, just not as frequently now that I have better understanding. But at first, you really do. It's almost like unpacking a suitcase. Like, you are taking everything out and like, taking a look at it. And like, then you're putting it away because you're like, "Okay, now that makes sense. Oh, that social experience makes sense. Oh, like this way that I felt about you know, A, B, and C makes sense. The way I experienced childhood makes more sense." Like, everything starts to… you start to see it from a completely different lens and light. But that that process can also be unbelievably exhausting, unbelievably confusing. If you don't have support in place, like, that is first and foremost. I think that's so important to highlight as well. MEGAN NEFF: Yeah, I think that is a great time to, if possible, work with a therapist, if not already, just… Some of the feedback I get a lot is, like, the people in my life are tired of hearing about this because it kind of, you know, I've talked about this before where I was, social interests become like our lens. So, there's often a lot happening in those first three to six months. Like, A, we're going through the dresser, we're opening all the drawers. So, a lot of our energies go into that. B, for a lot of people autism or ADHD becomes a special interest. So, we're researching, and we're reading, and we're intaking a ton of information. And then we want to talk about it a ton. Oh, back to, like, feedback I get, people are tired of hearing about it. But the other one I get is like people saying, "I feel like I'm kind of manic right now. Where people are telling me I'm kind of manic." And it's this flight of ideas as you're unpacking paired with special interest energy, paired with like a huge epiphany which can cause us like surge of energy, not always positive, some positive energy, some kind of agitated. And so, it's a whirlwind. PATRICK CASALE: A whirlwind is a good word for it to describe the experience. So, you know, I think if any of you are listening and you're relating, or resonating, or you're feeling like, what is happening to me during this post-diagnostic discovery period of my life? It makes a lot of sense, both clinically, from like mental health perspectives, and personally. I think it makes a lot of sense. And I do think that you start to see the world in different shades after this happens. And I think you start to see the world and everything that you do. And that can be challenging if you start to think about like, every action, every action. Like, you're kind of dissecting it and kind of examining it, that's kind of my process. So, it can be quite mentally exhausting when every response to an email, every time you start to experience like this anxiety around receiving messages, every time you go out socially you experience A, B, and C. Like, it's a lot to take in. So, just give yourself grace throughout this process because it is a life-altering and life-changing experience. MEGAN NEFF: Okay, this is going to diverge just a little bit. But can we talk a little bit about pendulum swings? And this gets into a question that also comes up in some of the consulting work I do. I'm curious if you see this. So, when someone, they find this identity, for a lot of people, not for everyone, but for a lot of people, it's really validating, it's really liberating, and then they get plugged in to autistic or ADHD culture. And then there is almost a, so social justice values come online, but almost a like anger that some people get trapped in of like a defensive anger to where everything is like, "Oh, that's ableism, that's ableism, that's ableism." And there's a ton of projection that then starts happening to the people around them, to I think they're probably working through their anger and grief, but it's showing up in a way that's not really working for that person very well, or working for their key relationships. So, they've almost pendulum swung from like, fawn response to fight response, and then get stuck there. And first of all, I want to normalize, if we were to map out developmental process post-discovery, I actually think it's really developmentally appropriate to swing over to fight mode. I then see a progression for some people, not for everyone, where they're able to integrate it in a way and kind of get out of that fight mode. Okay, I'm going to pause. First of all, is any of this making sense? Is any of this resonating with you? PATRICK CASALE: Makes perfect sense. I actually have several people in my mind who are immediately coming to mind. And like you said, it makes sense when the pendulum swings from fawn response to fight response. And it makes sense why there's anger. And it makes sense why you want to stand up for not only yourself but your newfound community. I think it makes a ton of sense. And we all know that autistic people and social justice go hand in hand. But it's so easy to get stuck in the anger. And it's so easy for… and this is how I see it show up. I moderate a large Facebook group. I see a lot of people attacking other people for usage of language. And usually, it's like someone who's like, "Hey, looking for a therapist in California who specializes in ASD." Then the responses immediately, "Actually, we don't use that language anymore." And whatever the response is. And it comes up a lot around the usage of language, this anger of like, get it right, use of formative-based language, identity-based language. I think the anger is valid. I also think that there are other ways that you can have these types of conversations that don't destroy you so much because anger is an emotion that is not meant to be used 24/7. It is an exhaustive emotion. It's a part of our fight-or-flight response. It's a way that we show up and that we show that we care, that we're concerned. It's a way that we really can create change. But like if you get caught in it, it can destroy you emotionally. MEGAN NEFF: Yeah, yeah, yeah. PATRICK CASALE: Does that make sense? MEGAN NEFF: It makes so much sense. I mean, if we stay in fight mode, right? Like, that is wreaking havoc on our nervous system. It's also like, I am so thankful for the people who were gentle with me when I first was learning. PATRICK CASALE: Absolutely. MEGAN NEFF: No one comes into this conversation knowing all the language, understanding it at all. Like, you and I have been in this conversation a long time, we still step in it, that's part of showing up in the world. Wanting to learn is risking stepping in it. And so, it's also about building a culture that is inviting. Like, I hear this from parents all the time of like, parents who are allistic, like, "I want to learn from autistic adults. But I go into those spaces, and like I'm terrified of speaking because if I like said this once, and then…" So, it's also about creating a culture that is open to educating. And I realize, like, that's a loaded sentence I just said because there's labor in educating. So, we've got to balance that out. And not all spaces can be education spaces. PATRICK CASALE: Absolutely. And I think there's even this underlying anger that can exist pretty consistently when you start to examine society and how it's not necessarily set up for neurodivergent people to flourish, to be accepted, to not be discriminated against. But again, it feels consuming. MEGAN NEFF: If you're locked in it, yeah. It's not about not having anger. Like, anyone in a marginalized group, like, should have anger. And anger is not about emotion, it's energizing, it's mobilizing. But it's the getting frozen in the anger, it's getting locked in it that is terrible for our health, and- PATRICK CASALE: [CROSSTALK 00:37:51] pumping, pumping, pumping [CROSSTALK 00:37:55] cortisol through your body. And it's just not great for your nervous system. It's not easy to regulate yourself when you're trapped in it. And we also understand that there are reasons to feel trapped in it at times, and just trying to move that pendulum a little bit to the middle, a little bit, even one little space over so that it doesn't consume because I think when it consumes that's where a lot of interactions go awry too that you didn't necessarily mean to have social engagements or professional interactions go a certain way, but because you're trapped in the anger things come across in a way where you can't always take it back. MEGAN NEFF: Right, right. So, when you're coming from a more integrative place, it's like you're honoring the anger experience, you're able to self-attune to it, but then you're also able to work through it to a degree to where like, you know, yeah, if you're in a cross neurotype interaction, you can maybe have a more effective interaction with that person that I would say actually makes the world better because maybe it's led to some education or led to some awareness. It's not perpetuated the misunderstandings that often happen across neurotypes. PATRICK CASALE: Right. Yeah because I think if we're approaching conversations always with anger, like people are entrenched in how they communicate and believe in a lot of times we're not going to get a point across, we're not going to help change someone's mind, we're not going to help educate when we're in a place of anger. But if you're coming to it with curiosity, so it's a much different experience. MEGAN NEFF: Yeah. I love that, curiosity. Curiosity, I mean, last podcast, remember, like, openness for constriction. Like, anger tends to constrict space whereas curiosity tends to open space. PATRICK CASALE: Yeah. MEGAN NEFF: And we need a lot more curiosity in this world, we need a lot more dialogue, and openness, and searching. And again, not to dismiss anger. We need both. PATRICK CASALE: I agree. MEGAN NEFF: I feel anxious about this podcast all of a sudden, and I'm like, I wish my words were working better. PATRICK CASALE: Yeah, I think that when we start to dissect things that create, and evoke, and elicit emotions, right? Like, we're talking about stuff that's heavy, we're talking about stuff that for a lot of people is valid. Anger is valid for a lot of people in our communities, especially, when we start to break down intersectionality, right? So, we get that. And I think when we start to talk about this stuff, I think you and I have this propensity to try to get it right. Almost like, I don't want to say the wrong thing right now, I don't want to like have to then deal with the consequences of like commentary, and responses, and feedback. So, it feels normal as a human experience to be like, "Ooh, this is making me anxious." MEGAN NEFF: I think what I'm realizing is making me anxious is that I feel like it could sound like I'm trying to police people's anger or their emotional response. And like, A, I don't want to do that. B, I want to normalize, like, this. PATRICK CASALE: This is, again, nuanced, right? So, if we go from like, anger over the neurodivergent and neurodiversity affirmative movements, I think that there's a lot of ways that we can have further conversations. Circling back to identity, I kind of think we answered the questions that we received. Now, what we will say to everyone who's listening is that we get a lot of emails, and a lot of comments, and a lot of DMs. And we are really, really, really thankful for all of the support. I mean, it feels like it happened immediately. And it feels a bit overwhelming, if I can just speak from my own experience. And we know we can't get to all of them. But we do read them. I do read all of the DMs and all of the comments that come in. To Megan's advice, I don't respond to all of them because it's impossible. But we are going to incorporate a lot of your comments and questions into episodes. And we are going to try to do episodes based on topics that people are suggesting because we want to get to everything and we know recording once a week doesn't always allow for that. I am just noticing Megan's shift in energy. MEGAN NEFF: Well, it felt to me like you were ending the podcast, so I followed. PATRICK CASALE: Yeah, I think that's where we're at, yes. Unless we have other stuff to touch upon. I think we're at a good place to stop. And I think that hopefully, we answered your questions about identity. We know that we could not only do two episodes on identity, we could do a entire season on identity. And we're going to have other guests on to talk about intersectionality. And I think that will also open up even more questions for dialogue around identity, which is, the beauty in these conversations is that we could diverge all day and still never have a finite response. But I love what you said about openness versus constriction when we are starting to think about identity, and moving into a place of curiosity, to really try to conceptualize it from that lens. Okay. MEGAN NEFF: So, this- PATRICK CASALE: This is our awkward goodbye time because- MEGAN NEFF: Awkward goodbye. PATRICK CASALE: You know, it's interesting when you are spending so much time with someone despite never meeting them in person, being able to intuitively pick up on energy, and I think that is a blessing and a curse sometimes for me. So, anyway, thank you so much for listening to the Divergent Conversations Podcast. New episodes are out every single Friday on all major platforms and YouTube. Like, download, subscribe, and share. And goodbye.
Identity is complex and interwoven into the world around us. But as Autistic individuals who wear a mask, identity is often not entirely shaped by ourselves. Late in life discovery of autism or ADHD can set off a cascading journey of self-discovery and identity exploration. Once we start to embrace our authentic selves and explore our identity, everything can change. In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, dive into the topic of exploring identity as late-diagnosed Autistic individuals and discuss the process of exploration and claiming an identity that embraces all our neurodivergent uniqueness, how it impacts and changes daily life and choices, and how it can shift both new and old relationships. Top 3 reasons to listen to the entire episode: Understand what unmasking and redefining identity can look like, as well as how it can impact both internal and external experiences, preferences, and relationships. Discover how breaking free from a "mask" identity can allow autistic individuals to explore their creative side, set boundaries, and authentically accept their autistic identity. Learn how to use pleasure and play to explore identity and discover your most authentic self. Give yourself permission to explore uncomfortable emotions and experiences. Be curious, dive into the things that give you pleasure, and detach from others' expectations to unlock new paths of self-awareness and understanding. Resources What is Masking in Autism? Autistic Masking Explained (blog post): https://neurodivergentinsights.com/blog/what-is-masking-in-autism?rq=masking Neuroqueer Heresies: Notes on the Neurodiversity Paradigm, Autistic Empowerment, and Postnormal Possibilities by Dr. Nick Walker (book): https://neuroqueer.com/neuroqueer-heresies Autistic Masking Workbook: As a podcast listener, you can use this coupon code to enjoy a 25% discount on the individual workbook or the workbook for clinicians. For Personal Use, use coupon code: Unmasking25 here (https://neurodivergentinsights.com/neurodivergentstore/p/autistic-masking) For Clinical Use, use code: Unmasking25-Clinical here (https://neurodivergentinsights.com/neurodivergentstore/p/autistic-masking-therapy-resources) Transcript PATRICK CASALE: Hey, everyone, you are listening to the Divergent Conversations Podcast. We are two neurodivergent mental health professionals in a neurotypical world. I'm Patrick Casale. MEGAN NEFF: And I'm Dr. Neff. PATRICK CASALE: And during these episodes, we do talk about sensitive subjects, mental health, and there are some conversations that can certainly feel a bit overwhelming. So, we do just want to use that disclosure and disclaimer before jumping in. And thanks for listening. MEGAN NEFF: Are we going to start this conversation, Patrick? PATRICK CASALE: I like that. MEGAN NEFF: [CROSSTALK 00:00:15] I mean, I was like, "Oh, snap. I'm supposed to have the social lubricant here and ease this into a organic conversation." But I'm terrible at that. PATRICK CASALE: I think about it as like the scene in Talladega Nights, if you've ever seen it, where Will Ferrell is like, "I don't know what to do with my hands." When he's on an interview. And like, "Just put your hands down." He's like, "Like this?" MEGAN NEFF: Wait, oh my gosh, that has actually, like, destroyed my life. Right now my hands are in my pocket. My whole life I either, like I used to wear skirts a lot, which is interesting because I'm very gender-neutral in how I dress now. But it had to have pockets. So, I always had pockets or a coffee mug, like a travel mug with me. Otherwise, like, my hands, I didn't know what to do with my hands. PATRICK CASALE: That's why I am always fidgeting with something in my hands or like, my dog is laying next to me right now, so I'm just petting him. He's not enjoying it. But I am like, so yeah, I am with you on that. So, I think today I can provide the social lubricant, is that we are going to do a two-part series on identity. And part one is going to be our own thoughts on identity, unmasking, etc. And part two is we're going to read some questions that came into our social media accounts and try to give some overview and depth into those. MEGAN NEFF: Thanks for providing the thesis, for doing what my brain cannot do this morning. PATRICK CASALE: That's [CROSSTALK 00:01:46]- MEGAN NEFF: Yeah, I don't know about you, Patrick, but identity, this is a really interesting topic to me. I think it's something I've been thinking about and talking about since the beginning of my autistic discovery because I think, especially, when you come at it later in life, so I was 37 when I self-discovered and then was diagnosed, there's a whole lot of life to unpack. And with that, a lot of core identities get kind of reshuffled in the mix. And I see this happen all the time, right? I work with a lot of people through the diagnosis process, the unmasking process, and it's a pretty intense identity exploration for a lot of people. PATRICK CASALE: Yeah, it's very intense. And I was 35, so about the same age as you. And I think that it starts to, I think, well, my brain has so many thoughts in it right now. Number one is, I think that autistic people, especially, are so analytical, and there's constantly this existential questioning happening, no matter whether you know that you're autistic or not. Like, it's constantly a process. And number two is once you find out that you are in fact autistic, it can start to unravel these things that you thought you knew about yourself or believed about yourself. And then it becomes very hard to almost separate like, what is autistic trait tendency characteristic versus what is my actual identity? Are they intertwined? Do they overlap? A lot of us are using identity-first language in an affirmative sense. So, I know for myself now I almost introduce myself as an autistic ADHD entrepreneur, person, therapist, whatever. So, it's really a complicated conversation. MEGAN NEFF: Okay, so that gets into, okay, my brain is also divergent. I think because this is such a big topic. So, like, what I heard in that of how you introduce yourself, you are integrating a new identity. So, that's task one, I would say. And these are not linear, I'm putting them into tasks to try and create some structure here. Task two or another task I often see is rethinking old identities. So, like, for example, for me, my gender identity, my sexual identity, my religious identity, my professional identity, all were on the table as I was also integrating a new identity. So, it's deconstructing old identities and re-conceptualizing them through an autistic… Well, through an autistic lens, but it's more like, once I learned to break free then there was like a, I want to use the word queering here. Like, I think learning I was autistic taught me how to queer my identity. It taught me how to think more critically, and constructively, and playfully about my identity, and that's contagious when that starts to happen. And then there can be this domino effect where all identities, or several identities start getting queered. So, queering, it means to challenge perhaps a common held narrative or social norm. It often uses storytelling, but it is a way of kind of subverting the socio-norms or the social norms. I'm sure there's other people that can describe it more succinctly. Nick Walker's work, if you're interested in the concept of neuroqueering will be a great resource. And we should add that to our notes, Patrick? PATRICK CASALE: Yeah, so it sounds like thinking about your identity from a lens where things start to blend that are no longer commonly clear, or sometimes even socially acceptable in terms of how we may have developed or how society sends messages as well. MEGAN NEFF: Yeah, yeah. PATRICK CASALE: I think for a lot of people identity becomes an uncomfortable conversation, in terms of like, I don't even know what my identity is, which is why so many people often default to like, "My identity is my profession, my identity is my role in the family system." And you never really fully, truly step back and think about like, "Really, what is my identity? How do I identify? What is it made up of?" Because there are all of these different characteristics, and traits, and belief systems, and things that are important to you that create your identity. And it's a complex conversation. And I think it's one that makes a lot of people really uncomfortable. And once you receive a diagnosis or self-diagnose, I do think you start to explore your identity through that lens. And like you said, first and foremost, like, identifying through that neurodivergent lens, and then putting these pieces together. And I think there are a lot of pieces to unpack for a lot of people. MEGAN NEFF: Yeah, so, I'll share my experience. And also, I see this experience a lot. So, my mask, right? It was all about fitting in, taking up less space, not drawing attention to myself, unless it was for my accomplishments. So, it was very tied… It's interesting, in some ways, I was always willing to challenge social norms, but at the same time, my mask was very, like norm-driven. Like, I wanted to not draw attention to myself. And so once that got deconstructed of like, actually, all of this is kind of garbage and I'm liberated to be me, a lot of identity ripples came with that. And I see that a lot, which I think is hard on family systems. If a person is partnered, it can be hard on the partnership. I think it's confusing for the people around the person of like, you discovered this one thing about you, but you've completely changed. But it actually makes a lot of sense when you think about going from a constricted narrative of self to an open narrative of self that is to question things. PATRICK CASALE: That's really well said. I think that's actually like hitting the nail on the head with that sentiment of going from constricted to open. And I think that what we're really trying to draw attention to is the correlation and connection between unmasking and identity, and how often they go hand in hand because when you are able to safely unmask, you are able to really start to become much more aware of the things that you enjoy, the ways that you move through the world. You no longer have to put on this facade about like, this is how I present, this is how I dress, this is how I look, this is how I speak. So, it really can be a complete mind fuck in a lot of ways of like, okay, now that there is this openness and this understanding, that can create a lot of internal confusion too of like, "Do I even like the things that I said I liked, or used to like, or participate in?" And then you're like, "Do I even know myself?" Like, I know that I've been in that stage for, maybe last year was a place where I really was deeply in embedded and entrenched in the like, "Do I even understand what I enjoy doing for fun? Or who I enjoy spending time with?" Like, I made me question everything. MEGAN NEFF: Yeah, absolutely, absolutely. I experienced something similar. And I see that a lot. And that's part of that like social diffuse self, right? That comes with a mask of all of a sudden it's like, wait, what does bring me pleasure? What do I like? What are my preferences? Which sounds so basic and simple, but it's so complex? Yeah. So, I'm curious, okay. We've been kind of talking up here. Let's bring it back to like our experience. How have you changed both in kind of maybe like day-to-day basic, like, what you wear? What music you listen to? But also, conceptually, how you think about yourself? Like, what identity shifts have you experienced in the last year and a half? PATRICK CASALE: I'm going to start with the easier portion of the question, which is like, how has my day-to-day changed? And I think like I've given myself permission to be open about my experiences that, you know, as an autistic ADHD human, I think that my clothing choices have changed drastically to really be sensory soothing. I definitely have started wearing more colors, too. I feel like used to be very muted. I think like very, like you said, not taking up space, not drawing attention to yourself. So, my wardrobe for so long was like black, blue, gray. And my wife was always like, "Do you want like a pattern or do you want anything?" I'm like, "No, I don't want any of that." MEGAN NEFF: We went opposite directions with clothing. I went from colorful to black. PATRICK CASALE: Yeah, I've really embraced brighter colors. And just like being more open, I think in terms of like the creative portion of myself, too. And the part of myself that really enjoys brightness and vibrance too because I think for so long, it was like very, very, very muted. I think that, also, what else has changed? Permissions, permissions socially. Giving myself permission. I set boundaries, so say no to even not have to explain myself in social gatherings about whether or not I want to be there, whether or not I want to make eye contact, whether or not I want to participate in conversations. So, I think that a lot has changed like that, in that regard. The more nuanced question of like, like how am I viewing myself or identity wise, I don't know, that's so complicated. I still think I'm in this phase where I'm really trying to embrace and openly like, boldly be okay with saying like, "This is who I am, and this is my identity, I am autistic." And I think that I'm just trying to be okay with taking up space because for so long, I never felt like that was something I was able to do or that I was capable of. MEGAN NEFF: I love that. There's been a lot of change in the last year and a half. PATRICK CASALE: Yeah, that's a lot change, for sure. MEGAN NEFF: How has your wife and other key people in your life responded to that change? PATRICK CASALE: My wife's been really a great support in that, in terms of like never really questioning anything. She doesn't like do a whole deep dive in terms of like, I would love for her to learn more about the autistic ADHD neuro type. I do think that she has been very supportive in my choices and like has really allowed me to say, "No, I don't want to go to this family gathering. No, I don't want to go to your friend's birthday party." Like, really being okay with that. So, she's been easy and that's come, honestly, pretty expectedly. Friendship-wise, I think that I've noticed the more open I've been, the more communicative I've been with my friend groups, the more I've attracted the friends that are neurodivergent, that are definitely autistic ADHD or one of one of the two. And I just noticed that, you know, I definitely have lost some friendships too from just maybe their own discomfort, or ableism, or just the inability to say like, I don't want to hear about this. Like, I don't want to talk about this. MEGAN NEFF: It's become all of who you are. That's something I hear, like, people talk about the feedback they get a lot of like this has become all, like, reductionistic. People will accuse the typically autistic more so than ADHD like, "This has become all of who you are." Yeah, yeah. PATRICK CASALE: What about you? How has [CROSSTALK 00:16:02]- MEGAN NEFF: Oh, gosh. PATRICK CASALE: …shifted for you along this way of like your discovery in the last [PH 00:16:07] five years? MEGAN NEFF: I really wish like we could go back and you could, like, meet masked Megan Anna and that I can meet masked Patrick. One, I was a lot more feminine and a lot of color. I wore, like, skirts. It's really interesting. There's something about presenting feminine to the world that was pretty baked into my mask that I'm kind of still sorting out. Very, like, high achieving. I was, you know, going through graduate program, so very people pleasing, kind of like, "Tell me what to do, I'll do it." I rehearsed so much. So, I would probably spend hours, like, scripting and rehearsing. So, my language use, it is less scripted now. And so, even I mean, I've talked about this, when I listen to this podcasts back is really different than what would have been before. For me, autistic discovery did lead to more exploration around gender. And I know we're going to do an episode soon on gender and sexuality, but kind of broadly, so I use she/they pronouns, and then identify, probably, a gender I think captures it most closely, I connect to some experiences. Like, I connect to the experience of being an autistic woman or the experience of being a mom, but I don't feel connected to my gender, and I now have language, or I don't feel connected to the idea of being a woman. And then I have language for that. And then the way I dress, and the energy I embody. I feel like I embody that versus the really feminine mask. Sexuality, I've embraced my queer identity as a pansexual human. That's complicated. I'm in a, you know, hetero monogamous marriage, but even just the ability to explore what is my sexual, like, experience as a human is something that I would have had so much repression around. And like, impression management. I would say I just had a ton of impression management going all the time. What other? Similar to you, I'm more sensory soothing. Like, cloths, everything. I go out in the world a lot less, which you know, I talk about this a lot on the podcast. So, I just don't push myself to do things that exhaust me in the same way that I used to. I talk about mental health struggles in a way I never ever thought in my wildest dreams I would disclose. The fact that I disclose my past history with depression, suicidality, self-harm, those were things I had so much shame about, but because I now understand them, I can talk about them openly. So, just, I would say a general openness that terrified me before, that's new. And so I mean, the idea that we even do this podcast and talk so vulnerably, like, if you had shown this to me five years ago, I would have been horrified that my future self was doing this. PATRICK CASALE: Now that your future self is present self and doing this, how is it for you to experience being open and vulnerable with the world because there are lots of people all over the world listening to you talk? MEGAN NEFF: You know, just not thinking about it is helpful. So, thanks for putting that thought in my head, Patrick. I mean, honestly, though, I think because now it's not the Megan Anna narrative, it is a narrative that wraps into a much larger narrative, which is undiagnosed autistic adults, specifically, undiagnosed autistic women. Again, that's where I do feel attached to that experience of being an undiagnosed autistic girl growing up. And so, it doesn't feel like I'm sharing my narrative, it feels like, you know, it's part of this tapestry of a much larger narrative. And that gives me a reason to show up vulnerably. And without that reason, and without it being part of something larger than me, yeah, there's no way in hell I could do this. PATRICK CASALE: I give you a lot of credit because I know starting out the conversation was I want to be able to drop in, and share some of this, and be more personable instead of more cognitive. I think you've really embodied that, which, you know, I think that, again, coming back to your statement of openness, you just use the word openness again. So, it really is going from that constricted, like, everything has to be really, I have to be vigilant about how I do everything. And even the things that I don't enjoy doing, I almost have to force myself through them, right? Like, and that comes to mind for me socially up until the last couple of years. And I think that's where I always struggled the most was socially and with sense of self as most of us do. And I really think that it's allowed me to identify in a way that has just, when I think of openness, I almost think of the word permission, and I just think about permission to just be myself. And it's still a process. Like, it's not a binary process, it's not a linear process of like, identity exploration. I think I'm still trying to find that true identity that I can really exist within, feel comfortable with. And that's just a work in progress. And I think that's a constant, almost existential questioning, and like analyzing, and introspection, and really being honest with yourself about like, what do I enjoy? What do I like? What are my preferences? When something comes up, am I just people-pleasing? Am I just saying yes, to say yes because I'm so used to, like, having to show up a certain way? MEGAN NEFF: I love that. You keep going back to, like, preference, and what you like. I think starting with pleasure is so important. Just yesterday, I finally uploaded August workbook, which, oh my gosh, Patrick, I really need to rein it in. I was listening to our podcast from a few episodes ago, where I was like, "These workbooks just keep growing." This ended up being my largest workbook because it's so huge. It's 170 pages which is just, I need to rein it in. But on the chapter on unmasking, I start with, like the number one practice is follow your pleasure. And I start with that very specifically because so many of us are dissociated from our bodies, and our pleasure, and are kind of cueing into other people's preferences. That I think is such a powerful place to start with unmasking is to follow your pleasure with curiosity because that's going to tell you a ton about yourself. Like, for me, my unmasking, when I look back, like what was my first thing I did that was unmasking? I didn't realize it was unmasking at the time. And this feels like a silly thing to share. But I threw away, like, all of my lacy feminine underwear. A, it's uncomfortable AF. B, I don't even know why I ever owned that shit. Like, probably because culture says women should own that kind of stuff. But I threw it away because it's really uncomfortable. And I was like, "I'm never going to wear this." And that was a simple step of me following my sensory pleasure, my sensory preferences. And that started a whole rabbit trail of discovering both sensory delight but also gender. And so much of my identity discoveries have started by following my pleasure with curiosity. PATRICK CASALE: I love that, I love that. Especially, you know, for everyone listening, that's an easy first step for you to start examining. And again, that gives me the perception, the image. I have this image of the word permission. Like, permission to do that, permission to probably really work through like not feeling ashamed about that, for a society like creating these narratives, to have permission to say like, this is not comfortable for me, I'm not going to do this anymore. And I think that's what we're talking about is like, and that can be simply as like, trying really, really hard to just even think about what it's like to experience a day inside and outside of your body. Like, I think about that so often as so many of us do. And the proprioceptive and interceptive just experiences, but I am constantly thinking about, like, what it's like to even be in my body. And I don't think I've ever been so aware of that in my life. And it's almost permission to just be uncomfortable being uncomfortable. And- MEGAN NEFF: Uh-huh. PATRICK CASALE: Go ahead because you [CROSSTALK 00:25:39]- MEGAN NEFF: Oh, no, I love that, permission to be uncomfortable. How did you say it? Permission to be comfortable being uncomfortable? PATRICK CASALE: Mm-hmm (affirmative.) MEGAN NEFF: Yeah. There's an acceptance that comes with permission that you're identifying versus resistance, which yeah, constriction resistance go together. PATRICK CASALE: Yep, absolutely. So, it's like, I think, for me, and for so many people I've talked to the permission with being uncomfortable, like, permission being comfortable with being uncomfortable because like, I'm not going to change this discomfort, this feeling that I constantly experience for the most part, but I can at least give myself permission to be comfortable with the fact that that is my reality and that is okay. And that has given me permission to just be like, I am uncomfortable. I'm noticing that. Like, I'm really noticing that moment by moment, I'm experiencing this feeling, or this emotion, or this sensation, and this is like, almost every day of my life. But it's okay because like, I'm not fighting so hard to change how I feel. MEGAN NEFF: Right, right, right. Yes, I have a story. I think I've shared it on this podcast before of like walking to get the mail. And instead of just like, you know, constricting my body, and like dissociating, and sprinting down to the mailbox, I let myself experience the sensory, like, elements. Let myself experience being overloaded, but with openness. And I think this is so huge of creating space to be uncomfortable and being okay with it. I mean, it sounds a lot like mindfulness, when you talk about it kind of the way you're narrating your experience. I had a aha moment maybe like a year ago where I was working on some mindfulness stuff. And I was like, "You know what mindfulness really is when done like this? It's a radical form of self-attunement." Which for a lot of us, we haven't accurately been attuned to by others, by the world, we haven't accurately been able to attune to ourselves because of masking. So, when we can narrate this is an uncomfortable experience for me, I am overwhelmed right now, I'm anxious right now, and when we can self-attune, that's actually pretty radical work. It sounds simple. But that's significant. PATRICK CASALE: Yeah, I agree 100%. And I will attribute a lot of this too. Like, you know, we're going to get to this in our second episode today. But a lot of you want to know, like, how do you get to this place? And a lot of it is doing your own work, a lot of it is introspection, but a lot of it has come through also just being in therapy, honestly, almost all of my life. And the narratives have shifted, right? Speaking, again, about identity. I, maybe a couple of years ago would have went to therapy for attachment-focused work, like, relational trauma, trauma within the family system, struggles I had growing up as a child, which are all certainly related to an autistic childhood experience without a diagnosis. And I wasn't going to therapy because I was autistic at the time. Now I'm going to therapy to figure out my own neurodivergence, my own experiences as an autistic ADHD human. And I think that has shifted over time as well. And the focal point has shifted too. MEGAN NEFF: The focal point of your therapy? PATRICK CASALE: Yeah. MEGAN NEFF: Yeah, you know, I actually got this from a, I was on a podcast [PH 00:29:20] Divergent Pod and she's the one that gave me this lens, but I loved it. She talked about having the accurate lens and that's what autism diagnosis does. And I've used that language ever since. And it sounds like you bring that into your therapeutic work. You are perhaps working on the right things but not with the right lens on and now [CROSSTALK 00:29:39]- PATRICK CASALE: Exactly. MEGAN NEFF: So, work on those things but with an accurate lens, which totally changes it. PATRICK CASALE: Yeah, yep, spot on. And again, like, it doesn't change how hard the day-to-day is. I just wanted to say that too, for everyone listening. But it does give you the accurate lens and when you have the accurate lens things seem to, like, fit together easier. Like, things fall into place easier. I can make sense of things from a different perspective. And regardless of whether they are challenging or not, it allows me to at least understand them better. And for me and my brain, I need the understanding. Like, I am seeking it all the time. MEGAN NEFF: Yeah, I mean, I think, I feel like you hit on this at the beginning of our conversation, but that understanding is so foundational, especially, for a lot of autistic people, we need to understand, which is partly what can trigger that kind of huge identity crisis in the aftermath of a self-discovery, or self-diagnosis, or medical diagnosis, or however you get there. PATRICK CASALE: However, you get there. I like that. And for those of you listening, like start with Megan's first tip. And also, I just recommend, like, when you are exploring, when you are trying to figure out what do I enjoy? What brings me pleasure? What brings me enjoyment? Double down on it, do more of it. Like, incorporate more of it into your life because we so often just default to what I think I'm supposed to do or like what I'm supposed to say yes to. So, I just really recommend that to try to be and like Megan said, curiosity is key as well. And just being curious about your own interests and your own likes. And really, really, really trying not to shame yourself for not knowing at first because I think that's quite typical in the process, when we are starting to explore, especially, later in life, especially, if you've gone through decades of your life, you know, thinking a certain way or experiencing life in one way. MEGAN NEFF: Yeah, I love that. If I could sum it up in two words, I think I would, pleasure and play. Like, those are two things, I love how you said kind of, like, linger with the things that you enjoy. [INDISCERNIBLE 00:32:06] Winnicott who is a psychoanalytic thinker, I mean, the, okay, you don't even know who Winnicott is. He talked about play. And the way he talks about play is so fascinating. He talks about play is where culture is born, play is where identity is born, play is how a child developmentally learns who they are, play is the place of identity. And so, pleasure and play, that's where unmasking is, that's where identity discovery is. PATRICK CASALE: And one, I absolutely love that. Two, this is why identity is so complicated and so nuanced because so many of us, especially, who are late diagnosed or diagnosed in adulthood didn't have that ability to have playfulness and attunement as children. And that's why it is so, so hard to identify your identity, your likes, your dislikes as an adult when you did not have that experience in childhood and why it can be so freaking hard to drop into playfulness as an adult. MEGAN NEFF: Yeah, absolutely, absolutely. I don't know that I'll have the energy to do this anytime soon, but one project I've had in my head that I thought would be really interesting would be to go through Erickson's Stages of Identity Development, but through a neurodivergent lens to see, like, why we get stunted in certain parts more easily because of being autistic or ADHD. And I think that would actually be really interesting. I think there's a lot of ways being neurodivergent impacts our identity development, but play, like you just highlighted, being such a key one. PATRICK CASALE: Absolutely. I'm not going to hold you to that because I don't want Megan to take on more projects these days, but it's a good idea. MEGAN NEFF: You sound like my husband. He's like, "I just want you to learn how to take on less." Yeah, yeah, I need. But I mean, it would be really interesting. Someone should do it. PATRICK CASALE: All can be true. All can be true. So, this is a great wrapping-up point, I think. MEGAN NEFF: I agree, I concur. PATRICK CASALE: You are reading the room correctly. MEGAN NEFF: You are reading the room correctly. PATRICK CASALE: Yes. So, what am I awkwardly trying to do right now? MEGAN NEFF: You're awkwardly trying to end the podcast. And then we're going to stop recording, and then we're going to record another one. But the listeners will hear it next week. PATRICK CASALE: Yes, that's it. All right. Well, thank you so much for listening to the Divergent Conversations Podcast. New episodes are out every single Friday on all major platforms and YouTube. Like, download, subscribe, and share. And goodbye.
Lived experience, awareness, self-identification, and self-diagnosis for autism and ADHD can have immense value, allowing us to connect with a community and share experiences that others may not fully comprehend. However, there are also risks of misdiagnosis and misinformation that can potentially cause harm. In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, explore the hot topics surrounding misinformation, social media anecdotes, and self-diagnosis of autism and ADHD. Top 3 reasons to listen to the entire episode: Understand the importance of finding “data points” to look at the overall person and the importance of doing research on diagnosis using multiple sources. Identify the reasons for self-identifying as autistic or ADHD. Learn about the risks and benefits of self-diagnosis and how to make informed decisions. If you relate to the experience of autism, ADHD, or any form of neurodivergent diagnosis that you hear about on social media or elsewhere, it's important to gather information and research from multiple sources before fully taking on the identity that comes with a life-altering diagnosis. Dr. Neff has tons of free resources available on her website, https://neurodivergentinsights.com, and Instagram page, @neurodivergent_insights. Transcript PATRICK CASALE: Hey, everyone, you are listening to the Divergent Conversations Podcast. We are two neurodivergent mental health professionals in a neurotypical world. I'm Patrick Casale. MEGAN NEFF: And I'm Dr. Neff. PATRICK CASALE: And during these episodes, we do talk about sensitive subjects, mental health, and there are some conversations that can certainly feel a bit overwhelming. So, we do just want to use that disclosure and disclaimer before jumping in. And thanks for listening. MEGAN NEFF: So, Patrick, there's a question I get a bit in interviews that I thought will be a good conversation thread for today. PATRICK CASALE: Yeah, let's talk about it. I know before we hit record we were talking about misinformation and how things are communicated via social media and in the medical community. So, take this away. MEGAN NEFF: Yeah, yeah. So, the question I get, and I don't know if you've gotten this question before, and I see it pretty much whenever an autistic or ADHD, like, clinician is interviewed by a mainstream outlet, I see this question often, which is, like, how do we feel about so many people self-identifying as autistic or ADHD? And then what do we do with the misinformation that is out there on social media about autism and ADHD? First of all, is that a question you've ever gotten before? PATRICK CASALE: I get that question a lot, not only in, like, my personal world, but my group practice clinicians. Like, the Facebook community that I moderate it comes up pretty often. Thanks, TikTok for all of your services here. MEGAN NEFF: Yeah, yeah. Well, I'm curious, how do you typically respond to that question? PATRICK CASALE: I'm a big proponent and advocate for self-diagnosis because I understand just the factors that go into trying to figure out how to schedule a neurodivergent affirmative assessment, the money piece, the accessibility, some of the discriminatory practices that are still in place. So, I think that I'm totally pro-self-diagnosis. I just get a bit concerned when someone listens to a 30-second TikTok video and comes away with a lifelong diagnosis that is like, "Hey, I listened to this video, it resonated. Now, this is how I identify." And I think it's a tricky line because you certainly don't want to dismiss someone else's reality. But I also think you do need more information than, like, someone speaking for 30 seconds on TikTok or Instagram. MEGAN NEFF: Well, and that's also very non-autistic. It's very non… Well, I mean, it might be more ADHD though, but it's very non-autistic to, like, listen to one reel and not do a deep dive that you spent months on. PATRICK CASALE: Yes, absolutely. So, that's where I kind of have the struggle mentally to think about if you are just hearing a couple of social media clips, and you know, in a reel, in a video, they're meant to be short, right? They're meant to be short snippets of information, and the takeaway is like, oh, I have this neurodevelopmental diagnosis condition, all of a sudden I'm identifying as autistic or ADHD. I just think it sets you up for a lot of potential misinformation. And I think it also sets you up for potential discrimination that may not even be valid or necessary because of the fact that this diagnosis may not be valid or accurate. MEGAN NEFF: Right, like I can imagine a lot of people, for example, with social anxiety might resonate with some of the things people share through the autistic lens, or complex PTSD, which that's a really muddy one to tease apart, to begin with. Didn't you make a TikTok about this and it went viral, and then you never went back to TikTok. PATRICK CASALE: Yes. MEGAN NEFF: Well, do you- PATRICK CASALE: [CROSSTALK 00:03:36] for following me down as I look down, showing that I'm completely mismatched in my attire right now. Yeah, I made this video about this, it went viral. I actually deleted the video off TikTok because I was getting so overwhelmed by how many views and responses, and comments that it was kind of- MEGAN NEFF: It wasn't getting a ton of hate, I would imagine? PATRICK CASALE: Oh, it was, actually, no, it was like, actually, very supportive. But I felt very overwhelmed in responding. And I've told you before, like I have a struggle and issue with not being responsive to things. So, what I found that doing was consuming days of my time where I was like at a conference, speaking at a conference, but most of the time on my phone responding to people on TikTok. MEGAN NEFF: This is why, like, every six months I'm like, "Do I just get off social media?" Although I'm a lot better, I wasn't at first round a lot better than you. I just don't respond. And actually, just yesterday I put up a automated email responder because I realized I was spending like two hours a day in my inbox, and it's not the quality of life I want. PATRICK CASALE: No. MEGAN NEFF: But yeah. PATRICK CASALE: You are a lot better than me. I will give you credit for that. I- MEGAN NEFF: I'm less of a people pleaser than you, you're welcome. PATRICK CASALE: Yeah, I mean, I like to say I'm like a recovering people pleaser, but then I'm like, is that true? Because you're still people-pleasing. MEGAN NEFF: If you're like at a conference trying to get ready to speak, and you're like getting pulled into responding to people's TikTok comments, I would say you are not yet in recovery. I'm so sorry, Patrick. PATRICK CASALE: I just want to name that this conference was over a year ago. So, I feel like deleting TikTok off my phone and never going back on it is a first step, so- MEGAN NEFF: But that's the enmeshment cut-off dynamic. So, in family systems, or in like, sorry, I'm like analyzing you, you can tell me if this is overstepping. I'm not analyzing you, I'm putting your situation in psychoed concepts. So, there's this idea, I actually think it's so helpful for family dynamics that the more enmeshed relationship is, or the more meshed the family, what often happens when one person starts to differentiate, which, typically, looks like putting up boundaries, responding differently to the family system, or the partner, if the other person or the family can't adapt to that what typically happens is cut off. So, you went from an enmeshment with TikTok to cut off, which is that typical, the more enmeshed you are, the sharper the cut-off will be. So, I would actually not say that was appropriate, Patrick, I would say that was a cut off, which is indicative of the level of enmeshment. PATRICK CASALE: You know what's unfortunate? Is you're right. And also, I was only on fucking TikTok for like, a month at that time, and the reason I didn't want to go on it was because of my fear of like having to be responsive. So, lesson learned. But one thing you said that really resonates with me, and the topic that we want to talk about is the social anxiety piece because that is definitely where the majority of my comments were coming from, of like, I made a video about bottom-up thinking versus top down thinking. And that was the one that went viral. And what happened was, most people who experience social anxiety were saying, like, but that's my experience in a lot of ways, too. But my struggle area was to then make more videos to describe, like, the differentiation between social anxiety and maybe being autistic, maybe, you know, being ADHD or vice versa because I was just like, frozen in paralysis mode in response. But nevertheless, like, I would say, almost 80% of the responses and comments were from people who had debilitating social anxiety who were like, "When I walk into a room, this is how I feel. Like, this is what I experience." And then having to also describe like, okay, but that's in social situations, right? And that's where we're really highlighting the differentiation in diagnosis, and I think that, you know, what you're saying is, those are the things that often get misconstrued, that's where a lot of overlap and misidentification comes in is when we're talking about things that look so eerily similar in specific facets or areas of life. MEGAN NEFF: Yeah, yeah. And this is where, like, so my bias, right? And why I started making the Venn diagrams I make is because my assumption coming from the medical system is typically these get misdiagnosed the other one, in the sense that autism gets messed, ADHD gets messed and the anxiety gets diagnosed. So, it's interesting to have, like, come into this world as trying to make a corrective. And then whenever I dip out of this world, and I go, like when I get interviewed by a mainstream outlet, the question is like, what do we do with all this misinformation of people worrying the opposite, that people are over-identifying? And that's where I think we have to have these conversations in relation to each other, like in a dialect of, to talk about this misinformation on social media, which I think there's lessons than people often… I think the medical community often projects a lot of misinformation on social media. Of course, there's misinformation. There's misinformation everywhere. PATRICK CASALE: Sure. MEGAN NEFF: But we have to have that conversation and conversation with the fact that the medical community has misinformation in the sense that training programs have not caught up to the most current research on non-stereotypical presentations, and autism, and ADHD. And so, it's really interesting. I feel like there's this, like teeter-totter effect happening that creates almost a polarization between medical community and social media. Like, I don't know about you, but I'm in Facebook groups with, like testing clinicians, and clinicians, and the derogatory things I hear about like, oh, all these TikTok autistic, you know, TikTok referrals or- PATRICK CASALE: To be autistic these days is what I hear a lot of it's, you know, cool to be ADHD, and that it just feels like a movement in terms of what people used to say and almost a stigmatizing way of when people used to self-diagnose as bipolar very often, and people would say, "Oh, it's really cool to be bipolar." Or like to claim that status. And I think that's what there's still a lot of discrimination and ableism even within the mental health and medical communities saying things like that, or using outdated terminology like Asperger's, high-functioning autism, low functioning autism, ASD, etc. And it's interesting the way that these conversations are being framed in these environments, too. MEGAN NEFF: Yeah. And I guess that's, I mean, right? This is kind of what we do is nuance. I guess I want to have a conversation that holds the both end of like, yeah, there probably is an oversimplification of autism and ADHD happening on social media. Like, there's really valuable education on there, specifically, for people with intersecting identities that are often misrepresented or underrepresented in the research. And so, the whole the complexity of like, neither one of these extreme narratives, like the extreme narrative on the other side, being like the medical community totally doesn't get it. Like, only social media…. I mean, that's not really the narrative, I don't know what the extreme narrative is. But- PATRICK CASALE: Yeah, it feels like an extreme narrative, right? Like, the medical community doesn't get it, or social media community always gets it wrong. Like, I think that's the polar opposite. And both are simply pretty inaccurate, I assume. MEGAN NEFF: Yeah. It's somewhat like both are true and both are wrong. Like, they're right in the middle [CROSSTALK 00:11:49]- PATRICK CASALE: …mental health, like, professional thing to say. MEGAN NEFF: Yeah, yeah, yeah. PATRICK CASALE: The both ends are true, right? And this is a very nuanced conversation. You're bringing up so many really important points that get overlooked so often. So, if we're talking about social media content made by other neurodivergent people, especially, with intersecting identities, people who have been marginalized, not only is this information accessible on social media, it's fucking free. Like, it's free. So, why would I not listen to the people who are showing up and talking about their own experiences in that way? MEGAN NEFF: Yeah, and that's where, like, I love the emphasis on lived experience of like lived experience, well, Sony Jane, I really love their content, I think their hashtag is literally lived experience education. Like, I love, and I see that term being used more now of kind of blending lived experience with clinical expertise. And that's a really important corrective is to highlight the lived experience so much of ADHD and autism has been defined by what people on the outside observe, right? So, like, think about the DSM, it's these behavior check boxes of things that can be observed by an outsider. And all of a sudden, what social media has done is it's opened up people to talk about these things from the inside, which is really, really powerful. PATRICK CASALE: Yeah, and I think that these conversations need to be had from both sides. So, we always think about, like, how do we bring things closer together, though? Like, what's the answer here? Because it still seems like there is a big disconnect in between, like, medical mental health community, actual lived experience, and then the validity when it's talked about within those communities of like, are we going to take lived experience at its face value? Are we going to say this is valid? And of course, it is, right? But I do think that there are a lot of professionals who would still say like, "Oh, no, we need to do X amount of research, we need to do these tests." But these things can be so excluding or discriminatory, and you're not seeing a lot of our research be founded on people of color, or people in the trans communities, or people of the queer community in general. So, I guess my take on it is that where is the middle ground in this? MEGAN NEFF: Yeah, I mean, I think, gosh, this makes it sound like I'm like, I don't know, I don't want to, I think whenever you start talking, okay, I'll just say the thing and then I'll say, I don't want to monopolize information, and I'm afraid this is what's going to sound like it. But like I'm seeing more and more autistic researchers or more and more autistic clinicians. The reason? Because I fall into that category, I'm like, "Oh, that makes it sound like I'm the only one valid to talk about it." That's not at all what I'm saying or thinking but I do think we are the bridge of like people who live at the intersection of both kind of traditional research institutions or traditional clinical spaces, and then lived experience. And I'm seeing more autistic researchers kind of come out and collaborate, and it's really exciting. And probably, also, ADHD. Again, I'm not seeing the same level of community around it, as I see around autistic researchers. But I think that is one of the ways that we bring these worlds together. PATRICK CASALE: Yeah, I think that's a great point. Why do you think it is that we're not seeing as many ADHD researchers, in your experience or in your perspective? MEGAN NEFF: It's interesting, this is going to, like, rabbit trail us, but I think maybe to an interesting conversation. Like, I know several psychologists who are ADHD or even researchers, but it's not as a focal point of their identity. It's even interesting, I was going about this with my own experience, when my daughter was diagnosed with ADHD, I didn't jump off into like, a huge research dive. I didn't get curious because I was ADHD. I was just like, "Okay, that explains things moving on." And maybe it's because I was so exhausted with everything I was managing and when she was seven, my son was three, I was in the middle of a study program. But when we discovered she was autistic, like, I dove headfirst into that. So, that's been interesting to reflect on even my own experience of, I feel like autism has become a much more focal part of my identity than ADHD. And I see that among the professionals I know who are ADHD. Like, they'll share it sometimes. But it's not like they're joining like ADHD research Facebook groups, it doesn't feel like it's as central to their identity in the same way that I see it happening in autistic spaces. Of course, there's going to be variants there. I don't know, do you resonate with that? Do you observe something similar? PATRICK CASALE: Yeah, absolutely. I think you and I have talked about this before with our own identifications within this podcast that we tend to talk about autistic experience significantly more than ADHD experience. And I think that what I said whenever this conversation came up last time was that it feels like there's still a significantly more stigma around autistic experience and diagnoses. And I wonder if that's why we don't see as many people who are consistently identifying as ADHD in all areas of life comparatively to most autistic people, where I see that becoming more of a place where people are really centering around their identity as if like, I want to own this and I want to claim this. MEGAN NEFF: Yeah, the other thing.... So, it's been interesting, I've heard so many talk about this and I really like their perspective, where they actually say, like, ADHD advocacy is behind autistic advocacy, in the sense of like ADHD pride or stigma, which, that was interesting to me because I probably would have had the inverse assumption. But the part when they were talking about like, ADHD pride, I was like, yeah, like, there's so much stigma and maybe it is kind of that pendulum, like because there's so much stigma a lot of autistic people we've really leaned into autistic pride to counteract that. But it's developing. But I would say the same level of like, pride in ADHD culture is not where autistic culture is. Again, it's going to depend on what spaces you're in. PATRICK CASALE: Yeah, that's really interesting. And I imagine you're right. Like, it would depend on which spaces you're in, and showing up in, and following, and participating. And I know that if I'm thinking out loud, like, about most of the Facebook groups that I'm in that I'm not participating in them, never just in them, mostly, are autistic spaces. And this is maybe my own bias coming up or my own, you know, is that like, I've always assumed I was ADHD. I think that was always just a part of my reality where young cishet white boy who has struggled sitting still, that was always instilled in my mind at a very early age, even though a lot of that was through an ableist lens. I think the autism diagnosis for me was much more life-changing than my ADHD diagnosis when I received that because I was just kind of like, "Yeah, I think I knew this." Like, this was not shocking to me. The autism diagnosis, like I've talked about, was really life-altering in a lot of ways and has really informed how I view the world in a lot of ways too. MEGAN NEFF: Yeah, you have talks about that and I've heard it when it's like, there's like a shattering moment, like the before and the after I hear in your story when you talk about and not necessarily in a bad way, just in a like, the world and the lens I see the world and myself is forever different. That it sounds like with ADHD diagnosis that moment and that happened. PATRICK CASALE: No, I don't even think I really gave it a second thought in the moment. I was just kind of like, "Okay, this makes sense. There are a lot of executive functioning challenges. I definitely struggle with certain aspects." But now, I think it's the social component for me. Like, the realization that the autistic piece was really the driving force behind a lot of self-discovery and diagnosis was, like I've talked about the feelings of loneliness, and disconnection, and alienation, and just never feeling like I belonged. I wanted answers for that. And I think that sounds like a lot of people who I've talked to about their own autistic diagnosis journeys of wanting answers, really wanting a deep dive, and really wanting to get clarity. MEGAN NEFF: Yeah, yeah, and like the mystery solves. And I actually do feel like, I think that is a shared experience, the mystery solves. Like, I've talked about this on here before how I felt like there was like 100 mysteries that I want to get answers to that were solved when I discovered I was autistic. But actually, I feel the same way about ADHD. Like, when my spouse and I moved in together, so we, you know, said we were raised really fundamentalist, so we didn't live together till we were married, which honestly, get his thoughts when he listens to this, I don't know if he would have married me if we did live together before because I'm messy. I'm so messy. And he was so confused by it. Like, why don't you close the cabinets? Why don't you like, because I would just, you know, I open cabinets, I leave them open, what, what. Now I've trained myself to close cabinets mostly. But it like really shocked him, I think how messy and disorganized I was. And there's so much there around my struggles to just, you know, adult, as they say, that ADHD really did help answer. PATRICK CASALE: Yeah, and I wonder if I just am… that so much of me is, if we're weighing out like parts, like much more autistic than ADHD because I have simple struggles [CROSSTALK 00:23:10]- MEGAN NEFF: Yeah, when you show me like your inbox or your computer screen, I'm like, where's the ADHD? What doesn't it look like mine? PATRICK CASALE: It's really in the spontaneity, and the creativity, and the like bursts of stimulation that I seek, like, I don't have the struggles where I'm like everything in my office is so regimented, and orderly, and everything in our house is so regimented and orderly. But then if I try to cook a meal, I can't put those two pieces together. And I really struggle, and you know, I'll- MEGAN NEFF: [INDISCERNIBLE 00:23:46] out of the steps is that, yeah- PATRICK CASALE: Yeah, it's really challenging. So, it's interesting, as I observe that more and more because, you know, you and I have talked about, like, ADHD part got really creative and agreed to all these, you know, projects. And now, autism is like, why did you do this to me? You know, like, that's how I feel all the time. MEGAN NEFF: Yeah, yeah. PATRICK CASALE: Yeah, so I don't know. I'm still trying to figure and parse that out for myself, honestly. MEGAN NEFF: Yeah, yeah, yeah. I was about to ask, like, based on your office, your computer, which I've seen, at times, I was about to ask, like, do you have executive functioning struggles, but it sounds like you do with the sequencing piece. PATRICK CASALE: Sequencing is very challenging. I will definitely have situations where I have to also diverge into multiple spaces to communicate with people and I think that can irritate and rub people the wrong way at times when I'm like, "Here's a message here, here's a message here, here's a simultaneous conversation going on all over the place." That has always been a big struggle for me. I don't know, I do have executive functioning challenges, but I don't think that they're as significant as a lot of people who I come in contact with or spend time with, or coach, or communicate with. My issues are typically social struggles, mainly. Like, the social piece is real. That's the big kicker, for sure. MEGAN NEFF: So, more autism? PATRICK CASALE: Yeah. MEGAN NEFF: Yeah. I'm switching my camera because it was like bobbing which if I was a listener, and I was watching that, that would drive me crazy. So, that's why I- PATRICK CASALE: [CROSSTALK 00:25:46] for everyone watching right now. MEGAN NEFF: Yeah. PATRICK CASALE: I think my noise-cancelling headphone battery just died because now I hear this, like ringing outside. I hope you cannot hear it. But yeah. MEGAN NEFF: I'm sorry, the world of tech issues. PATRICK CASALE: All happening at once, crumbling down before your eyes as we're talking about, like, misinformation around social media and technology. MEGAN NEFF: We diverge pretty far there. So, let me ask you this, like, okay, so yeah, the mainstream question is often like, are you concerned about this? Would you say you are concerned about misinformation on social media with autism and ADHD? PATRICK CASALE: I feel like Megan just caught me in like this trap right now because I'm like [CROSSTALK 00:26:40]- MEGAN NEFF: It's a terrible question and you don't have to answer it. The reason I'm asking is because like, it's what mainstream media likes to ask people like you and me. And my elevator response is, well, we've got to have that conversation in relation to the misinformation in the medical community. And that's kind of how I sidestep the question. PATRICK CASALE: Right. If you had to give a yes or no answer to that? MEGAN NEFF: I think, I have, let's say, how have I said this before? I think I've said the benefits of like lived experience awareness being out there, the benefits of self-identification and self-diagnosis by far outweigh any so-called risks. And I guess the risk being someone might misidentify. Like, I know there is this idea out there, like, are we diluting the diagnosis? And I think, again, you've just got to have that conversation in relation to how many, like, the underdiagnosed groups, like, I mean, how appropriate, right, that the moment, you know, people of color, women, gender queer people start getting diagnosed where like, "Oh, these diagnoses are being diluted. So, I guess I don't really answer it. Well, I mean, I guess I do answer it, I say the benefits outweigh… And I find it is interesting, what are the risks, I guess, the risk being if someone identifies with an inaccurate diagnosis, and let's say it is social anxiety. You know, there's really, really good treatment for social anxiety. So, if it deters them from seeking treatment for social anxiety, or for complex PTSD, and like healing their nervous system, then yeah, that would be unfortunate if it's like they've misidentified as autistic and then decided this is part of my baseline experience because I'm autistic, but it's actually social anxiety, and therefore they never get treated for social anxiety. Like, yeah, that would be really unfortunate for that person. There might also be benefits, they might connect with a community that they feel, like, deeply connected with, they might forge some meaningful connections along the way. But yeah, I would say that's actually a risk now that I'm thinking out loud. PATRICK CASALE: So, this is why I think this conversation is so nuanced, though, because it's like, the answer is like, do you think that social media and diagnosis and misinformation is a bad thing? The answer is like, yes, and or no and, right? Like, depending. But I do think like you mentioned, benefits outweigh the risks, then that's my perspective as well. And I think you're absolutely correct. But there is room then for someone to unfortunately struggle more in certain areas that they don't necessarily have to. Like, they have the accurate information. MEGAN NEFF: Right, right. Exactly, is that they might be embracing something about themselves that is actually very treatable. PATRICK CASALE: Right. And who knows how long that can go on, it could be a lifelong experience, right? Like, ultimately. But I also think about the flip side about how many times I've been misdiagnosed in my life with things that definitely were not an autism diagnosis. And then there's the flip side of trying to treat these "treatable" conditions like social anxiety, complex PTSD, managing bipolar disorder symptoms, to no avail because we're looking at it from the wrong lens because the medical or mental health community got it wrong. MEGAN NEFF: Exactly. PATRICK CASALE: The evaluations or tests or assessments are very, very brief, 45-minute clinical interview where I answered questions a certain way. MEGAN NEFF: I see bipolar get diagnosed so quickly by, particularly, psychiatrists not to throw psychiatrists under the bus, but like, I'll maybe be working with someone for like, years, and then they go to have one appointment with a psychiatrist and psychiatrist is like, "bipolar" after a 45-minute interview. PATRICK CASALE: Yeah, just like that, then you're on mood stabilizing medication and… MEGAN NEFF: And that's a hard one because once it's on your record, like, providers are pretty cautious to put you on, like, an SSRI and classification of antidepressants. So, it's really hard to ever get it off your record because people… and actually, again, I think, oh, gosh, nuance, right? Like, I think if someone has been diagnosed with bipolar, and it's warranted, like it was actually a good clinical interview, do you think it's good to keep it on the medical record because you do want to know about the risks of triggering mania. PATRICK CASALE: Absolutely. MEGAN NEFF: But if that was a diagnosis put on after a 40-minute interview that didn't consider it ADHD and autism, like, yeah, that's really unfortunate. PATRICK CASALE: And I think that happens so often. And we talked about some long-term impact of certain and specific diagnosis when we're talking about like life insurance, and, you know, potentially employment when they're running background checks too. Like, diagnosis carries risk. And it is also a nuanced conversation when we're talking about diagnoses. So, like, I think that's why this conversation is so complicated because if we're talking about the mishaps with the medical system and the mental health system, which we kind of touched upon last week, I mean, or, yeah, last week, we're talking about very brief clinical interviews, for the most part where these people don't have enough time to really assess or not appropriately train to assess. And you leave with a diagnosis after being asked like, what's your family history? What's your own history? What's your involvement with substance use? What's your risk-taking behavior? Okay, well, now I'm leaving with this diagnosis that is probably not accurate. And that's really frustrating for me. MEGAN NEFF: So, yeah, it's tricky, right? Like, a clinical interview is a really fine tool, right? In the sense of these have been finely tuned over the years. So, like for the bipolar clinical interview is not that complicated, in the sense that if you meet this criteria, okay, but here's where it does get tricky and where I wish clinicians were trained. And so, the MDQ is the screener that essentially assesses for presence of mania and it'll ask, so things like kind of more risk-taking behavior, inflated sense of ego, kind of flight of ideas. And then It'll ask, you know, I think it's five or more of these present in a given window of time. What we know is that that screener is also sensitive for ADHD combined type and ADHD hyperactive type. So, if a clinician knows that, then you'd want to get a sense of like, okay, so these experiences that you're describing, like, let's really, like is how much is just part of your baseline? And then I think you'd want to do, well, you absolutely would want to do screenings for ADHD too. How did I get on this? Where was I going? Oh, clinical interviews, I think are good tools, but when you're not thinking about what else explains this, that's when they go awry. So, especially, with bipolar, if you're not thinking what else, specifically, ADHD or autism that explain this, and most clinicians aren't because the way we've been trained to think is that those ADHD and autism would have been caught in childhood, so why would it be on my radar if I'm assessing a 32-year-old? PATRICK CASALE: Absolutely. And also, like, you and I both know what it's like behind the scenes in certain clinical environments where you just are, like, seeing clients, seeing clients, seeing client, and that does not always lend itself to be thinking and conceptualizing from that perspective. And it's much more about just like, let's get this done, like, I need to see the next person, I have productivity requirements, like… MEGAN NEFF: And you're thinking about risk, risk reduction and if you are questioning this person might be bipolar from a risk reduction standpoint, it is… I'm not saying this is right, I'm talking about, right, like, in a clinical mind, I could see why it's less risky to diagnose it and be cautious because, again, you want to be thinking about medications that might be triggering mania. That's not a diagnosis you want to miss. And so, I could see why if someone's in the gray area of is this bipolar or not, and again, they've got 45 minutes, and then moving on to the next person, and they're deciding do I put you on an SSRI or are you on stabilizer? Like, why they would make that decision? Is it like from a what medication they put you on, it can be seen the less risky choice? PATRICK CASALE: Yep, yep. Absolutely. And, you know, I think because on your, you know, Megan's Venn diagrams that she puts out for, was it Misdiagnosis Monday? MEGAN NEFF: Yeah. PATRICK CASALE: Which are so, so helpful to acknowledge that those overlaps, right? Whether we're talking about mood disorders, complex PTSD, or we're talking about social anxiety, the overlaps, that's also what is being talked about in very brief 32-second clips on social media and how you could simply just be talking about that overlap without understanding of the differentiating factors, and how easy it can be to then all of a sudden say, okay, that is my reality. MEGAN NEFF: So, like, one misinformation piece I see on social media a lot, there's like, I see this kind of move to a monopolizing experiences or traits or symptoms. So, for example, you'll notice in a lot of my Venn diagrams, sensory issues is often in the middle because, you know, sensory processing disorder is not technically a DSM diagnosis anymore, but like, there's a lot of people that can have that outside of autistic people, ADHDers are more likely to have sensory processing, sensitivities or sensory processing disorder. When we're anxious, our sensory system is running on kind of a heightened level, so we're going to have more sensory issues, OCD tracks with sensory differences. There's like two sensory systems that tend to be more impacted by OCD than others. PTSD, again, the nervous system is on fight-flight alert so everything's happening through a hyper arousal unless they're dissociated. But I see this a lot of like, oh, if you're sensory sensitive, you're autistic. That kind of misinformation I do see on social media. I'm like no, like, we don't monopolize sensory sensitivities. So, actually, now that I'm thinking about it, you're right, there is some like misinformation on social media that kind of gets me upset. PATRICK CASALE: That is a wonderful example of how complex and nuanced this conversation is because it's like, oh, those little aha moments where you're like, "Oh, yeah, that is problematic, right? Like, that can be a major issue." So, I think we could have a whole damn series on misinformation. And it's just a conversation we want all of you to start thinking about in a very nuanced way where it's not black and white, and that things do get missed, and that there is misinformation out there. And I do think you have to really do deep dives when you're thinking about some of the stuff. MEGAN NEFF: That felt like concluding remarks, Patrick? PATRICK CASALE: That's what we're going to start calling concluding remarks instead of [CROSSTALK 00:39:07]- MEGAN NEFF: I don't think Megan Anna, that's weird, I just talked about myself in third person. I don't think I ever do the concluding remarks. It's probably because I don't have very good summarizing skills. PATRICK CASALE: I also have, like, time urgencies. I think that's why I'm like, okay, yeah, time to conclude. But I do think it is time to conclude, or we could do awkward goodbyes. But I think that there's so much ambiguity, ambiguous space. I can't use that word ambiguous. It's ambiguous. Like, this conversation is not black and white. It's not binary. And there is a lot of middle ground and I really encourage all of you, if you're not, to check out Megan's work about misdiagnosis. Megan lays this stuff out, I don't want to say better than anyone, I might be biased. MEGAN NEFF: Don't say that, that's way too much pressure. PATRICK CASALE: No pressure here. It's really helpful. It's really, really helpful. So, check out Megan's website, neurodivergentinsights.com, check out Megan's Instagram Neurodivergent_Insights. Like, it's so helpful. And I cannot say that enough. Like, my clinicians use your stuff all the time. They share it constantly. And it's helpful in addition to whatever you're hearing in your medical appointment, or mental health appointment, or whatever you're hearing on your TikTok series, or Instagram. Like, really combine those things. That's what I think is important is to combine lots of different aspects. MEGAN NEFF: I like that. Yeah, make a, now I'm going to try say that word… maybe I would, smorgasbord. PATRICK CASALE: Yes, you said it right, I think, yeah. MEGAN NEFF: I said it right? Oh, my gosh. Yeah, like a potpourri board [INDISCERNIBLE 00:40:57] like, yeah, I love that idea of combined. Like, just making sure that we're getting our information from multiple sources is a really good way to kind of, yeah, I think, have a more robust frame on any of these things. PATRICK CASALE: I like that. I can't wait for the transcription to come out on that. Yeah, make a smorgasbord of potpourri, a charcuterie board, like just piece this together instead of just taking information from one source. And I think that's really important in any sense in society. But really important when we're talking about life-altering diagnoses and understanding I think that's a really important part of this. And I hope that's the big takeaway today. And I also want to acknowledge that we weren't all like doom and gloom the entire time. And we offered a lot of insight. MEGAN NEFF: Oh, sorry, I'm backtracking data points. I talk about data points a lot with people. So, like, there's a ton of free screeners online, both for ADHD and autism. Those are data points, talking to people in your life, those are data points, listening to reels and Tiktok, those are data points, leading with your doctor, data point. And some of those data points are weighed more heavily than others, but I like the lens of like gathering data points. PATRICK CASALE: I love that. And that is a perfect ending. So, thank you so much for listening to… I almost said Neurodivergent Insights. Thank you so much for [CROSSTALK 00:42:22] listening to Neurodivergent Insights. Thank you for listening to the Divergent Conversations Podcast. New episodes are out every single Friday on all major platforms and YouTube. Like, download, subscribe, and share. We'll see you next week.
Self-disclosure of an autistic diagnosis in medical situations or even everyday life is a very vulnerable thing to do, and there are so many results that can come from it. Self-disclosure can result in both negative and positive experiences including everything from insurance challenges and negative societal assumptions to better accommodations for sensory issues in medical situations and quicker access to neurodivergent-affirming healthcare providers. This mix of results can make the decision to self-disclose or even seek a diagnosis in the first place a very tricky choice. In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, cover the topic of self-disclosure for autism diagnoses and share their personal experiences, both good and bad, around self-disclosure as autistic individuals diagnosed in adulthood. Top 3 reasons to listen to the entire episode: Understand the complexities of disclosing autism diagnoses and the various implications it can have on one's life. Understand the complications and stigma surrounding getting treatment with medication for neurodivergent individuals who are struggling with chronic health issues. Learn how to tailor self-disclosure to meet specific needs and goals during medical visits. Self-disclosure in medical settings can be complex and feel vulnerable and is not always right for everyone and every situation. However, if you choose to do so, using the method of partial self-disclosure to tailor care to your individual needs and finding healthcare providers who are neurodivergent-affirming and willing to learn about you and your needs can help reduce stress in medical situations. Resources: Autism Acceptance In Medical Care: This infographic talks through steps medical providers can take to be more Autistic aware and inclusive: https://neurodivergentinsights.com/autism-infographics/autism-acceptance-in-medicine Transcript PATRICK CASALE: Hey, everyone, you are listening to the Divergent Conversations Podcast. We are two neurodivergent mental health professionals in a neurotypical world. I'm Patrick Casale. MEGAN NEFF: And I'm Dr. Neff. PATRICK CASALE: And during these episodes, we do talk about sensitive subjects, mental health, and there are some conversations that can certainly feel a bit overwhelming. So, we do just want to use that disclosure and disclaimer before jumping in. And thanks for listening. MEGAN NEFF: Good morning, Patrick. PATRICK CASALE: Good afternoon, Megan. MEGAN NEFF: Isn't that funny? It's your afternoon, it's my morning. PATRICK CASALE: I know, it is. MEGAN NEFF: It was actually like a perspective shift moment. I was like, should I say good afternoon because it's Patrick's afternoon? Or should I say good morning because it's my morning. Good subjectivity are we going with here. PATRICK CASALE: I like that. And I think it's important for everyone to know that, you know, you're in Pacific Time and I'm an Eastern Time. So, a little bit of a different experience. MEGAN NEFF: Yeah. Well, I'm not going to ask you how you are because I hate that question. But I am curious, like, what kind of headspace you're coming into today's episode with? PATRICK CASALE: I like that you name that you hate that question because you've told me you hate that question [CROSSTALK 00:00:48] so many times that I no longer ask of that. I don't that. MEGAN NEFF: I can say like, I had to train you a little bit, but like it worked. You no longer ask. PATRICK CASALE: Also, I'm like not doing that with friends or family. Or, you know, so anyone who's listening, I owe that all to Megan. MEGAN NEFF: You're so welcome. PATRICK CASALE: There you go, that's your gift today. MEGAN NEFF: [INDISCERNIBLE 00:01:11] friendly now because Patrick has stopped asking how are you? PATRICK CASALE: Yeah, I've also really tried hard to, like, filter my emails through an autistic lens and longer like, unless I absolutely feel like, "Oh, I really want to pitch this thing and it has to come across this way." I've really tried to shift that. What kind of headspace am I in today? I feel actually pretty good. I am tired, like physically tired. I sent you that really gnarly bruise on my calf. I feel like my whole body feels like that right now. I noticed like I have a retreat that I'm hosting next week, so I have been in like hibernation mode most of the last couple of weeks just trying to like, charge as much of my battery as I can. And right now, like, I feel pretty good. How about you? MEGAN NEFF: Let's see. Okay, I'll start with the sensory stuff and start with that, I'm having like a high sensory day of like, it's so interesting how these things ebb and flow. Like, I want someone to wrap me up really tight in a blanket, and like, I want all the pressure and all the way. Like, last night my husband came in, and he was like, "Are you wearing two beanies." Like, I had two beanies on my head. I love the pressure of beanies on my head. That's why I wear a beanie like all year round. So, having like a high, like, I just want a lot of pressure on me. Headspace-wise, like tired, but then burpy. Like, so many thoughts popping around which… and then, that's always interesting when that's overlaid on top of like, tired, but energetic. And then, yeah, we're leaving for Canada next week, and I've got a workbook to finish. This is such an autistic thing because I'm also doing a manuscript. So, my intention was like, I'm going to make a really simple workbook this month, it's going to be a gratitude journal, I'll introduce gratitude in five pages, it'll be a 35-page thing. Do you want to know how many pages it is? PATRICK CASALE: I want to guess but I feel like it's at least like 90. MEGAN NEFF: Yeah, it's 127. I don't know how to do simple. Like, it just grows and it grows and it grows. And my husband, he used to be an English teacher, so he like added [PH 00:03:24] suits for me and he's like, "Yeah, I just know this about you. Like, you can't do simple." PATRICK CASALE: That's the second week in a row where you've kind of mentioned, well, maybe you mentioned it to me through texts that just the understanding that he has of your processing. I love that for both of you, to say like, I know this about you now. Like, this is a part of who you are. MEGAN NEFF: Yeah, you say you're going to make a 30-page workbook and it's 120. That's you, that's your brain. And I'm going to edit 130 pages. PATRICK CASALE: Right, right. Well, yeah, it's a united front, so that sounds pretty good to me. MEGAN NEFF: Yeah, yeah. No, he's wonderful and super helpful because grammar and spelling is not my thing. Okay. So, we talked about talking about kind of continuing the conversation. Wait, did I just abruptly transition us too quickly? Do you have… PATRICK CASALE: I feel good about it. MEGAN NEFF: I had, like, a [CROSSTALK 00:04:26]- PATRICK CASALE: …today unlike a lot of my days where I'm like scattered in and I feel pretty centered right now. MEGAN NEFF: Okay. Yeah, it didn't go off my head, like this is interesting. But our listeners might want us to get to the point. PATRICK CASALE: True. MEGAN NEFF: So, yeah, I really loved the conversation we had with Mel last week. I think both of us walked away with like, wow, that was so I'm impactful and interesting. And there's so much to dive into here. And it got me thinking about some of my experiences medically and especially, experiences around self-disclosure, and I know that is a really tricky subject around if you're in a position where you have the option, if you're going to self-disclose or not, not everyone has that option. Like, if you're diagnosed as a child, it's in your medical record. But for those of us coming at this in adulthood, we sometimes have that option, do I self-disclose? And navigating medical appointments. Like, that's a really vulnerable thing. And I don't know about you, but I know for me, and I think for a lot of autistic people just walking into a medical office, our anxiety, like, shoots up, and then, to talk about disclosing on top of that, like, it's just a lot. So, I thought it'd be interesting to have a conversation around, like, self-disclosure, navigating medical systems. PATRICK CASALE: Yeah, one, I just want to say that I feel like if you are listening right now, and you listen to last week's episode, my mind was like blown throughout that conversation where I was learning so much, not only about myself, but what a just incredibly helpful conversation all around. I've already told so many friends to listen to that episode because I was like, "This is so good." We haven't even released it yet. So, as I'm tracking what I'm saying, most of you who are listening are like, this is happening in real time and we have a queue of episodes. MEGAN NEFF: That's why last week you were like, "Can we bump this up?" [CROSSTALK 00:06:19]. PATRICK CASALE: I was just like so excited, it was so good. Yeah, so the self-disclosure piece is interesting. And you're right. Like, for those of you who were diagnosed as a child, it feels like that autonomy was kind of taken away from you. Like, you don't have the option to say yes or no, I want to put this into my record. And I think it's interesting because if you don't have a good relationship and rapport with your PCP, or whichever provider it is, I think it's daunting, and intimidating, and even more anxiety-producing to even consider disclosure because we know that diagnosis follow our medical records. Like, these are things that are charted, these are things if you're using your health insurance, like, they're going to follow you. And that can have an impact in a lot of ways. Like, even when you're looking for potential life insurance options, like things like that might. My last life insurance update and exam I got denied increased coverage because of my throat condition and my autistic diagnosis. Both of those things were notated in my request to increase my coverage. MEGAN NEFF: Really? Okay, so I've like heard stories about this, but I see you actually had that happen, and you wanted to increase life insurance to like, so if you die tomorrow, and they were like, "No." PATRICK CASALE: Yep, yep. I wanted to increase for my wife, you know because I'm like, "Okay, I'm in a position now where financially I'm making more money than I was when I first did this." And I want to make sure she's okay. Did all the tests, did all the medical tests, and they don't really give you a whole lot to go off of other than like, "Hey, it was rejected. Here are the comments." And the comments are Zenker's diverticulum, which is the third condition that I have, and autism. And I thought, "Huh, well, that feels pretty shitty." Now, I don't feel like I will ever pursue this option again. And I think that is also something to consider when we're talking about disclosure and diagnosis. MEGAN NEFF: Yeah, I mean, these are some of the concerns I hear. Like, there's kind of like five big concerns, but one, like life insurance, but then, also being denied like insurance, if you're trying to… and I should also add, like we're speaking in the US context, I'm sure some of these things would apply internationally. But obviously, like insurance in the US is just a hot mess. So, some of this might not apply internationally. But… PATRICK CASALE: It's a great point because I know that we actually have so many people who are tuning in consistently from the UK, Ireland, and Australia, and Canada. So, one, thank you. And two, yeah, your healthcare systems are a bit different than ours. MEGAN NEFF: Yeah. That's actually why I'm going to Canada next month, just testing it out, see… Actually, wait, no, I couldn't move to Canada. Like, I'm pretty sure that's one of the countries, so that's another part of having to put up your medical record, is there some countries you can't migrate to? PATRICK CASALE: It's really fascinating because you're not always thinking about this in the moment when you're in the doctor's office, right? Because there is anxiety, like you mentioned, and you're nervous about whatever you're there for, and potentially, just the sensory overwhelm. And if you're using health insurance in the United States, and that is a part of your record, you don't really have a choice of whether you want to disclose or not. But we're talking really about the autonomy of saying I did this testing, whether it's self-diagnosis or whether it is from testing result and I have the ability to let my provider know this because it could be helpful for them to then conceptualize my medical conditions and struggles through this lens. But then that's a whole nother like nuanced conversation, right? Because that provider really has to be really ND-affirming too. MEGAN NEFF: Yeah, yeah. And I think that's definitely my anxiety is like, what are the associations going to be? When I say I'm autistic are they going to think… Like, there's so many worries, right? So, there's, like, the assumptions I think they might put on me on one hand, and like, are they going to start talking to me like I have an intellectual disability, which that's a common experience because people don't often realize, like, in mainstream people don't always realize that an intellectual disability and autism are separate, there is a higher rate of co-occurrence, at least among diagnosed autistic people, right? So, they can co-occur. And typically, that's when we're talking about level three or level two autism. Level one autism is which you and I were diagnosed with, is autism without a co-occurring intellectual disability. It's not that simplified. I'm simplifying it a little bit. So, one it's like are they going to start making those assumptions and either start talking loudly or start, you know, these things? Or on the other hand, are they going to think I'm full of shit? And like, "No, you're not autistic? Like, here you are, we're having a fluid conversation." So, like those are kind of the two sides of the road of the two fears I have when I'm disclosing to anyone, but especially, to medical providers, knowing that the medical field is pretty far behind on the research. PATRICK CASALE: And I mean, let's take that a step further, like we talked about last week, the mental health field is still behind, so… MEGAN NEFF: Yeah, when I say medical, I'm including mental health field in that for sure. PATRICK CASALE: Got it. I never know with like psychology because psychologists there's so much overlap and inter-woven like medical and mental health, and I know they go hand in hand. But I think so much of our country feels like medical and mental health are separate. MEGAN NEFF: Yeah, that's a good point. I worked in hospitals for so long that in my head, it's like, it's a really [CROSSTALK 00:12:03]. PATRICK CASALE: Yeah, and I totally, like, most mental health professionals, hopefully, understand there's a holistic picture of health here where medical and mental health go hand in hand, and I know, but there's an archaic version of like, what it's like to be autistic in the mental health community. So, when I think about medical community, I think about it even as more archaic and more sterile, and a way of like saying is it safe for me to openly disclose this information in this environment? And some of you that are listening may have had the same provider for a long period of time because you feel comfortable with them, so then it's like, do I disclose this part of myself that's so important, knowing that there could be repercussions, or knowing that there could be a reaction that really doesn't feel affirming to me, or supportive, or safe? MEGAN NEFF: Yeah, yeah. And I think that's part of like outside of medical, right? That's just part of self-disclosure. And like, I work with a lot of people in the first, like, you know, year post-discovery, and so spend a bit of time talking about self-disclosure, and like a few things, like tips, I give people with one, like, be really comfortable with this in yourself before you start disclosing it because, like, often, we will get responses that either make us, like, activate our imposter syndrome around the diagnosis, or just make us feel like really bad about ourselves. Like, sometimes it's a really positive experience. And I love those moments. But often, there's a lot of painful interactions that come with self-disclosure. So, one of the pieces of advice I give people is like, be so comfortable with this on your own so that if you get or when you get those negative responses, it's not going to shake you to the core in the same way. PATRICK CASALE: That's great advice. I think that's really important because the more you can openly talk about this stuff, the more you can openly put this out into the world, I do think it gets easier. But that also comes with inherent risk. And I think that's why I've tried so hard to just openly talk about it over and over and over again, not just for myself, but for people who cannot. And, you know, I was talking last week on the episode that we did with Mel about talking to my PCP about autism, and sleep, and sleep struggle, and I really appreciated their reaction, which I don't think is like the norm, where they were just like, "Oh, you're autistic. Okay, cool. Like, how do you want me to… Is there anything you want to send me? Is there anything you want me to learn about? Is there anything that you feel like is [CROSSTALK 00:14:32]- MEGAN NEFF: That is so cool. PATRICK CASALE: I was like, "What?" I was blown away by that. I was just like, but I don't think that's the norm, in terms of that reaction [CROSSTALK 00:14:41]- MEGAN NEFF: That is not the norm. And first of all, like what PCP has time for that? I will say, my psychologist's response, and I mean, psychologists they're still very busy, but their caseload you know, PCPs have like their panel was like 2000 or more patients, right? Like, there's a lot of patients they're interfacing with. But my psychologist had a similar response when I brought up autism. And like, I, of course, sent him so many resources because autistic brain. And like it was really cool. He met me in that and was like, willing to learn and curious about it. And I think it's influenced him as a psychologist with other patients, which is really meaningful. So, that's really incredible whenever you find a therapist or medical provider who's like, "Okay, I'm curious, tell me more." PATRICK CASALE: Yeah, absolutely. And I think this conversation can be both discussed around, not just the medical staff, but also, mental health staff. So, your therapist, I mean, we've talked on here about disclosing to your therapist and having such negative reactions in that field where people are told, then, "Oh, I'm not comfortable supporting, or I don't feel like I have enough training, or I have to refer you out." And that's a fear too because that brings up so much abandonment and shame of like, there's something really wrong with me where this person cannot help me or support me. And I've mentioned my own therapist on here many times, and I know she listens to this podcast. But again, another shout out to someone who's affirming, who's like, "Send me podcast episodes, send me like clips of what you and Megan are talking about when you feel like it's really important for our sessions because then it helps me better understand your world." But I really wish that we had more providers who were really interested in learning and really supportive and affirmative, and I just feel like we don't. I think we're missing the mark a lot of the time. MEGAN NEFF: Yeah, yeah, yeah. Can I shift conversation a bit to talk about, like, self-disclosure experiences? PATRICK CASALE: Totally. MEGAN NEFF: So, it's interesting I feel like, actually, well, you know, I've been talking about in the podcast, I've been sick for like two or three months now. Finally, like, my lungs finally feel okay, for the first time in three months, which is great. But it means I've also been to the doctor more. And so, I've self-disclosed three different times to different medical providers. It's not in my medical chart, so I was diagnosed by a private psychologist, and then, I have Kaiser which, like, it's a really big, kind of inclusive, it's an insurance company, but also hospitals. And I, like, hadn't added it to my medical record. So, the most recent one I had was actually last week, it was the dentist. I hate the dentist. I think most autistic people do. And between COVID and the dentist, and hate it. I haven't been in three years and didn't realize it was that long. So, I had a cleaning. And they were doing it because it had been so long, there's more buildup, and they were using a, like a scraping machine. And there was a high-frequency sound that was piercing in my inner ear. And like I was obviously, in pain, and the hygienist was asking me like, "Are you in pain." And I was able to disclose, like, I have sensory issues, and I'm experiencing a lot of pain. And so, then we kind of tried some things. And I was so impressed with his response. And I want to note, this was a partial self-disclosure, and I'm a really big fan of talking about where you can do a full self-disclosure, I'm autistic, I'm ADHD, but you can also do partial self-disclosures. Like, I have sensory issues, I have a sensory processing disorder. So, I used a partial self-disclosure. And he was incredible throughout the rest of it. And he was like, "Hey, just let us know next time you're in that you've got sensory processing." The other thing he mentioned was like, "I've been doing this eight years, and I've never seen this." And in my mind, I'm thinking, "I'm sure you have or people probably aren't saying anything when they go in. They're probably disassociating through it, or they're not going in like me." PATRICK CASALE: Right. MEGAN NEFF: But that would be an example of a partial self-disclosure, and it went well. PATRICK CASALE: That's great. I mean, especially, in an environment where like, I don't know anyone who enjoys going to the dentist, and then, you take it a step further with someone who is autistic or someone who has any sort of sensory processing disorder. It's a horrible experience and for them to recognize that you are in pain, and then, to help navigate through that, I imagine going back will feel maybe a little bit more comfortable the next time. MEGAN NEFF: I'm totally going to go back, specifically, to that provider. And yeah, it makes it way more likely. Like, I think, I mentioned that on the episode last week, like, I have a medical avoidance which is really unhelpful when you've got like chronic medical stuff going on, but it makes me way more likely to go back and to kind of stay on my normal six-months schedule that, you know, is healthy. PATRICK CASALE: Yeah, I think the ability to… it probably feels like feeling seen and feeling validated. Like, instead of saying like, you're making this up, this shouldn't be painful, or just completely dismissing the experience that you had. MEGAN NEFF: Yeah, yeah. Like, it shifted to a really collaborative, he's like, "Do you want to like push your ear in?" And like that did help. And then he's like, "Do you want to stop?" And I kind of made the choice of like, I'd rather get the buildup off, and like, not have to do that again. But just having it be a collaborative decision. Like, and having my autonomy kind of centered in that experience was incredibly helpful. PATRICK CASALE: It sounds incredibly helpful. And I think about, like, someone had asked us on our Instagram to do an episode on like autism and chronic pain, and the correlation, which I think is a good idea, for sure. And I'm in chronic pain all the time. Like, I've had significant back issues for the last decade, I'm tall, I play soccer, I've been injured. And it's just, I think that pain, feeling like there's an increasing sense of chronic pain and sensation too, and a lot of providers can really dismiss that as if like, or minimize that experience. And I think that can feel so frustrating to want to pursue another appointment, or to circle back, or to do a follow-up because it's like, I can't even really have my experience validated and feel like it's really feeling supported and seen. And that doesn't make me want to do another appointment- MEGAN NEFF: Totally. PATRICK CASALE: …so I just live with the pain. MEGAN NEFF: Sorry, okay, you're… PATRICK CASALE: No, it's good. MEGAN NEFF: Well, and that… So, if you think about chronic pain, and especially, autistic ADHDers, like I think part of what can be the medical avoidance is we know how we're being perceived. Like, we're being perceived as like pill seekers, right? Like, so we're talking about ADHD medication. Like, I had a provider just a couple of weeks ago be like, "Oh, well, now we're talking about controlled substances." And so, like it was just so stigmatizing the way she talked to me about ADHD medication. And then, chronic pain, right? Pain medication, this is another one that, like, gets really stigmatized. So, if we're an autistic ADHDer, in chronic pain, seeking medication to support us, like, I think we know how we can be perceived, which is not a great, yeah [CROSSTALK 00:22:30]. PATRICK CASALE: So, the narrative's already been written, right? If you're going in as an autistic ADHDer on a controlled substance for your ADHD medication, and you're in chronic pain, and the quick review of the chart is like, you know, we have systems in place in this country that highlight like whether or not someone's on a controlled substance so that you're not going from provider to provider. And that immediately pops up and you're talking about chronic pain issues, there can definitely be this immediate, what's the word I'm looking for? Perception, that you are med seeking, that you're like, "Okay, this person is on a controlled med for ADHD. Now, they're in here for pain issues, looking for something that's going to help alleviate this. This is something that we now have to talk about first and foremost." Opposed to like saying, "Hey, here's the experience, this is what we're going to do to support you through it." MEGAN NEFF: Yeah, exactly. And then, you've got 20 minutes. And if you spent, like, most medical visits are like 20 minutes, and if you spend 10 minutes, like convincing the doctor why you actually are going to use these medications responsibly, and 10 minutes to talk about the complex medical stuff, yeah, yeah. PATRICK CASALE: Yeah. And it makes sense why so many people, like you mentioned, have medical avoidance or just have to dissociate or are just struggling with their bodies and how they're experiencing everyday life. And just feeling like that's the better alternative because I don't have a provider that I can go to comfortably, and really speak about my experience. And this is a whole nother conversation, like we talked about last week, where we could talk about the medical system and all its flaws for days. So, like if you're a medical professional, and you only have 15 minutes with a patient, and you have to get all of this information, there's so many areas where that can just fall through the cracks, or be missed, or completely just not even discussed or avoided. MEGAN NEFF: Yeah, absolutely, absolutely. And this is why medical providers are experiencing moral injury at such high rates. This isn't what they signed up for. Like, they wanted to help people, that's why most physicians go into the field. PATRICK CASALE: You're seeing a lot of physicians move into these models that are like membership-based, where they're seeing fewer clients, and you have a monthly membership fee, and it's actually can be quite affordable. And that's actually the model that I'm involved in here. I think it's like $70 a month, and I can see my physician and PCP at any time. We have like messaging software's very available. And I have health insurance, I don't have to go into that model, so I'm very lucky and privileged to be able to say that, but like, I would rather opt for that model than have to use my health insurance and just find someone who takes BlueCross BlueShield, and then see if they're a good fit. MEGAN NEFF: But, so then you pay out of pocket for your medical visits? PATRICK CASALE: Yeah, no, it's all-inclusive in that price, like $70 a month includes like, as many medical visits as I want to have with this person. MEGAN NEFF: Wait, how do they like, from a business model, how does that work? That doesn't seem sustainable. PATRICK CASALE: Well, you got to think like if they have 500 patients, and I have no idea how many patients this practice has, and everyone's paying $70 a month, what's the likelihood that all 500 of those people are coming in on a monthly basis? The odds are quite low, so you're making consistent revenue, and then, you're becoming more accessible and available because you're seeing fewer patients. And I love that model. And I think a lot of practices are starting to do that. But for people who do not have the ability to go to something that's more tailored, more catered, have more time with your provider, like, it's a struggle, right? Like, a yearly annual physical that takes an hour's time and you sit in the waiting room for three hours, and you're frustrated, and overwhelmed the whole time, it's not a good experience. MEGAN NEFF: Well, and the body boundaries. I think that, I mean, I don't even know the last time I had a physical… I actually don't have a PCP, it's on my to-do list. My PCP retired in like 2020 and I just haven't gotten a new one. I definitely should do that. PATRICK CASALE: This podcast is going to hold you accountable to that. MEGAN NEFF: I know, it's on my to-do list. It's on my, like, those are the things… that's where I really feel my ADHD is things like that, where it's like, that's been on my to-do list for a long time. Going to the dentist was on my to-do list a long time. That's where it's medical stuff, and like just that daily life stuff, where I really struggle to get myself to just do it. But yeah, the body boundaries aspect of like having a physical or like, that is always really hard for me, not going to see the doctor. PATRICK CASALE: Yeah, absolutely. That makes total sense. And then, having to re-establish with someone new. I mean, there's a lot of challenges here, so we're talking about a lot of barriers. And I'm realizing that as we're talking, like, yeah, what I don't want to do is say, like, the system is broken, and we're all screwed. Like, that's certainly not the [CROSSTALK 00:27:31- MEGAN NEFF: Yeah, and I feel like we do that a lot on our podcast. And I'm, like, being mindful of that of, and I'm seeing this on social media. And like, I'm seeing this in spaces. And I'm feeling this too, like, a lot of the educational posts that are out there are around educating about what's hard for us. And I think that's absolutely important. And actually think like, if you think about the discovery process on like a developmental arc, I think the first process is like identifying, oh, these barriers I experienced, they're connected to autism, or they're connected to ADHD. But we have to move beyond that. We have to move on to like, hope is such a loaded word, so I don't exactly want to use the word hope, but to things that are really pragmatic and helpful. And like, okay, so these are the barriers, and here's what to do about it. So, like, I'm feeling that in general with the like, kind of autistic, ADHD neurodivergent affirming world. But I'm also feeling in our podcast of like, okay, I don't want to be yet another voice just talking about how hard our lives are. PATRICK CASALE: Yeah, it's a hard thing to navigate. And you're so right, like because our lives are hard, so we don't want to dismiss that. MEGAN NEFF: Yeah, we want to honor that. And we want to move the conversation beyond that. PATRICK CASALE: Absolutely. So, I think- MEGAN NEFF: We got to [INDISCERNIBLE 00:28:52]- PATRICK CASALE: What can we do in this situation, when we're talking about the stigma of self-disclosure in medical and mental health spaces? And what can we do to ensure that we're taking care of ourselves, and our physical needs, and our mental health needs too, in a way where we, maybe it's not filled with, like, complete and utter dread all the time? MEGAN NEFF: Yeah, yeah, yeah. Should we kind of shift our conversation and our energy to talk about like, what are some things people can consider doing? PATRICK CASALE: I think so. I mean, we could highlight the other side of the coin all day, it feels like, and I think, maybe we default to that cynical outlook because we're so used to living in a neurotypical world that isn't always set up for us. MEGAN NEFF: Like, it's so important to talk about, and it feels easier in some ways to talk about that than to talk about, okay, now, what do I do about it? Yeah, yeah. PATRICK CASALE: So, I think when we're talking about like, how do… we've talked about how to seek out neurodivergent affirmative mental health spaces. Like, that's pretty clear and cut and dry. And I think it gets a little bit more challenging when we're talking about medical spaces because sometimes you kind of feel like you get what you get and- MEGAN NEFF: Oh, 100%, yeah. PATRICK CASALE: … we don't have the autonomy of choice all the time, especially, if you're in like a small rural area, or health insurance isn't great, or whatever. So, I do think we have to figure out strategies in terms of how do you ensure that you're mentioning, like Megan said, like, that there is some sensory, you know, sensitivity or struggle, how do you mention that? You know, I struggle to sit in a waiting room that's really brightly lit. Like, these are the conversations that need to be had, I think. MEGAN NEFF: Yeah, absolutely. And I think this is, at least in the US, one of the hard things, it often takes a visit with a provider before you really know. Like, I will always go on the directories and read their bios, but even then it's like, it's after the experience. But grabbing the provider… when you do have a positive experience, when I'm grabbing them, like that dental hygienist, like I, you know, wrote down the name, and I'm like, I will schedule with him forever. Same thing with, I recently met with a OB-GYN provider who was incredible. And I disclosed I was autistic. And their conversation went well. And I asked her, then I was like, "How do I make you like my primary doctor for OB-GYN care?" So, whenever you do have a positive experience, like figuring out how to grab that provider and getting them on your panel. PATRICK CASALE: I love that. That's a great point, though, like when you do have a positive experience asking that question and trying to feel comfortable as possible to say, how can I ensure that when I come here you're the person that I see, you're the person that I have contact with? I think that's a great step. MEGAN NEFF: Yeah. PATRICK CASALE: I imagine if that hygienist leaves that dental practice and you find that out, you're going to follow that person to another dental practice because of the comfortability and the ability to feel supported. MEGAN NEFF: Yeah, yeah, yeah, and that gets back to like, another, I guess, tip would be thinking through your, like, what are your primary needs, and then, pairing your disclosure to that? So, if you're someone who hasn't disclosed, if it's not in your medical record, and you don't want to disclose that, especially, there's a lot of trans people right now who are like disclosing that can have implications for gender-affirming care, so that I know, especially, in the transgender and queer community, this is like a really key topic right now. So, there might be reasons you don't want to fully disclose. So, thinking through, okay, what do I need in a medical visit? So, yeah, for me, sensory stuff. For me it was really important my OB-GYN knew I had sensory issues, it was really important. My dental hygienist knew I had sensory issues. So, I paired my self-disclosure to that need. Actually, for the for the OB-GYN, I did a full self-disclosure because females are more prone to a lot of endocrine stuff, I wanted her to know that. So, again, it was paired to my need, what am I trying to accomplish here, and then tailoring my self-disclosure to meet that need. PATRICK CASALE: Right. That's a really great point. So, what I hear you saying is like in these moments you have to be intentional and it doesn't always have to be the first time I meet this person I tell them everything. Getting really comfortable with the provider, and then deciding whether or not what is the purpose behind this disclosure, how is this going to best serve me? And I think that's important because you want to protect yourself. MEGAN NEFF: Yeah. And you want to get your needs met. And it's a really effective, like, it's a good effective communication tool, in general. It comes from nonviolent communication theory, like express the underlying need, and then, make a request, right? So, it's basically, practicing nonviolent communication. So, another one that I see a lot being helpful, especially, for ADHDers, like an ADHDer, I feel like that tends to be in the medical record because many of us are on medication for it. But it could be like, I struggle with attention and remembering. Like, my work in memories is poor, especially, when I'm anxious or like in a medical setting, you want to have to add that part which is struggle to focus, "Is it okay if I audio record your feedback to me or if I audio record part of our visit today?" That's a super helpful one because we're often, again, those 20 minutes, are fast, and we're often talking about complex medical things that aren't going to stick in our head, especially, like, if there's a lot of medical language that can be overwhelming, so being able to audio record a session is one accommodation I find been really helpful for a lot of folks. PATRICK CASALE: That's another great tip. Another thing that I've done that I've found useful is sometimes writing down a list of questions before you go into a visit or things that are on your mind that are causing you anxiety that you would like to have addressed, so it doesn't feel like you're just sitting in this appointment, and it's like, "Oh, my God, I feel really overwhelmed and I don't even get to ask the things that are important to me or bring them up." Scheduling-wise, asking for reminders, making sure that you are opting in to reminder texts, or calls, or emails so that it can help you get yourself oriented, especially, if your executive functioning is really struggling in that way. I find that to be really important for appointment reminders, and just ensuring that you have something on your calendar to defer to or however you like to visualize what your week and month looks like. I think that also helps quite a bit. MEGAN NEFF: Absolutely, absolutely. Yeah, especially, you know, most of us have met like complex medical stuff going on. So, I love that idea of like writing things down ahead of time. I often even tell people, like, what are the top two or top three things you really want to talk about in the medical visit, knowing like, if you have a list of eight things, you're not going to get to it in 20 minutes, and because probably, like, prioritization can be hard for us, and then, again, if we're anxious and kind of in a fight, flight, or freeze state, we're not going to be effective in our self-advocacy. So, thinking through ahead of time, okay, these three things I really want to talk about and I'm even going to script out like, what I'm going to say, or I'm going to write it out. I love that. PATRICK CASALE: Yeah, yeah, absolutely. I think asking, you know, any ND-affirming and positive and supportive community that you're a part of, like, does anyone have recommendations of providers who are ND-affirming? Because I think that's another way because, Megan, if you're saying I really enjoyed this hygienist, this person was really supportive. I imagine if someone was to ask about that you would be the first person to like, "Definitely see this person." Like, with person you'll feel comfortable, where you're going to talk within our communities and I think just having that ripple effect of sharing positive experiences is also really helpful. MEGAN NEFF: Yeah, I don't think I'll actually do this, I don't think I have the spoons for it, but maybe one of our listener wants to do this project on. I've been saying for like a year, I really want to make like, a neurodivergent directory for like everything, right? So, I think a year ago I went and got my hair done for the first time in three years because it was so long, and again, like, these are things I don't like. So, I went on the website of the place I was going to go and I was like, "Who looks the most neurodivergent? And like, someone with purple hair, and like spunky, and I was like, "Her." And I went to her, and she was, and it's amazing. And just how much of a difference it made having a neurodivergent hairdresser, like, it has been so impactful that I think if we could make neurodivergent directories at like groupthink, I just think that would be so, so resourceful, PATRICK CASALE: It'd be amazing. I mean, if any of you want to take that on as a startup or a project, when Megan and I have the spoons and capacity we can help add to it. But like, I think if people just were able to do that, you know, where we had some sort of resource. And I know it's hard, geographically, but like, just location-wise. And I'm lucky, like, and you are, too. I mean, we live in areas of the country where the cities are probably a bit more progressive than other areas of the country, so we're going to have more providers who are more holistic. And that is definitely a privilege for us to have the ability to say like, there are multiple providers we can contact for this one thing. I also think being mental health professionals, people are more inclined to listen to our feedback. And if someone's not, so I know that's also a struggle as well in terms of advocacy in the medical space. MEGAN NEFF: Yeah, yeah. I mean, this topic of self-advocacy in medical spaces, like actually, it's on my wish list of workbooks to make someday because it's such an important topic and like, I think it's such an area of a struggle for so many of us. And there are some really practical steps of like, okay, this can help me think through how I want to seek out medical care or organize the visit, or, yeah. PATRICK CASALE: Just the little things. Like, if you can do some of these little things that we're suggesting prior to a visit, I think it can alleviate just a little bit of anxiety. It may not complete really remove that sensation, or emotion, or experience, but I do think that it can at least allow for things to feel more manageable when things can feel really overwhelming when you're starting with a new provider, or doing a follow-up, or concerned about something that's happening and you don't really know if you're going to have enough time with this person. So, I do think these strategies can help quite a bit. MEGAN NEFF: Yep, yep. Are we at the point? PATRICK CASALE: I don't know. I'm reading you right now and I feel like maybe you're at the point, or you're at the transition point. Which one would you prefer? MEGAN NEFF: Yeah, I don't know. I mean, there are a few other things in my head I tagged of like, that could be an interesting story, but like, it feels like we're in whatever that conversation was, like, I guess self-advocacy and medical office, it feels like we're done with that conversation. I don't know if that means we're done with the podcast for today or if it just means we'll transition to another similarly related topic. PATRICK CASALE: I love that this is our experience. Like, this is really how this goes. And so many of you have mentioned that you really enjoy this aspect of the podcast, so we want to keep that feeling as natural, and awkward, and uncomfortable as possible for everybody involved, including ourselves. I do think we're done with these self-advocacies component of this conversation. I do think we can transition elsewhere. I'm always tracking time, as I've mentioned before, and it is about 15 minutes from your next appointment, so we can do something else in the next five if something's pressing on your mind. MEGAN NEFF: Well, this is an association, it's not about healthcare. But it was an interesting realization So, I've been listening to our podcast back and I hear my awkwardness and I hear my misspeaks. Oh, I should add this because I felt so… this was my one misspeak that I was like, "Okay, these kinds of misspeaks bugged me last week." Well, the show that aired last week, the one after Thomas. There's was more of group dynamics. I said, "I used to exercise three to four hours a day." Which like, that is an exercise disorder, it was three to four hours a week, but I said day. And I was like, "Oh my gosh." Like, I need to like go back through and like add bloopers of like, "This is what I actually meant." Anyways, that aside, like, aside when I make like mistakes like that, I actually have loved my awkwardness, which is really interesting because I think I used to be so nitpicky in my awkwardness. Like, if I was doing a presentation, I'd record myself, I'd watch it, I'd figure out how to make that smoother. And I genuinely, when I'm listening back to our podcast and I hear me being awkward or hear me misspeak, unless I'm indicating I have an exercise disorder, I smile, and I enjoy it, and it brings me delight, yeah. PATRICK CASALE: I love that because, you know, when we first started this and kind of pitched each other the idea, I think that was a concern for you. Like, "How am I going to come across? And how am I going to embrace my authentic just experience and personality?" MEGAN NEFF: Yeah, I mean, like a lot of ADHDers and autistic people, like I've got pretty gnarly RSD, like rejection sensitivity. So, putting myself out here in this way, I definitely was scared about. And I do realize that, like in being able to celebrate my awkwardness, A, it made me realize how much I have integrated my autistic identity and I have worked through a lot of my ableism. And I've realized that actually really helps with RSD in other ways like, and I mean, there's other places in my life where the RSD is still really active, but around my awkwardness, it's not nearly as much. PATRICK CASALE: I love that. And I also love how this right now, like just processing out loud is probably going to lead to an episode because I think we definitely need to do an episode on RSD. MEGAN NEFF: Well, and this is why my workbooks go from 30 pages to 130 pages. It's the divergent, like, and the combination of ADHD and autism, right? So, it's like, "Oh, this connects to this. Oh, but I have to go really deep into this." PATRICK CASALE: Right. Yes, yes, yes, yes. I love it. Yeah, I think that there the RSD topic is a crucial one and one that we should definitely do an episode on and we could do a series on from people's experiences, too. I mean, stuff is so painful and so there's so much vulnerability there and I'm glad that you feel comfortable with your awkwardness on here. MEGAN NEFF: Yeah, yeah, yeah, we should definitely talk about RSD. I've actually got some content planned for it next year. So, I'll be deep into that research which will be fun. PATRICK CASALE: We'll do a little behind the scenes of like Megan's life every week of like, what is Megan planning right now? What's Megan's deep dive? MEGAN NEFF: Yeah because I guess it is my, like, whatever my deep dive is for that month, it's kind of my lens. Like, because I'm spending so much time with it, it becomes my lens for seeing the world, which is, I mean, that's why it's the perfect business for me as an autistic ADHDer. It's like a new, deep, immersive ecosystem, but they're all connected, but they're different enough that I don't get bored. So, if I could just learn to not, like, write 130 workbook page every month, and like, tone it down, then this is a perfect business model for me. PATRICK CASALE: Sounds like good goals for the foreseeable future to try to figure out a way to satiate all parts of you to be able to do that. But yeah, I think that's a good topic for sure. And I think embracing our awkwardness is another form of advocacy in some capacities. Like, if we can be okay being awkward in public spaces, and okay with some of our, I'm trying to think of how I'm trying to say what I'm saying. I'm feeling awkward right now. MEGAN NEFF: Are you saying [INDISCERNIBLE 00:46:16] the thing you're talking about right now. PATRICK CASALE: Yeah, exactly. You know, I think if we could just highlight that and just be like, "This is how we experience life." Right? That's the point of this podcast. Sometimes is like live processing, of acknowledging like, this is how we go through life, and when we have to mask, or when we have to really shift those behaviors, or interactions, or the ways we show up, it doesn't feel authentic for us. And it also feels painful and it also feels exhausting. So, I think the more we can do this, the more we can, you know, embody just actual real sense of self, then I think that's a really powerful thing. If you want to talk about RSD for the last 30 seconds, I obsessively check our podcast reviews on Apple podcasts, like almost every day. I don't know why, it's just something I've always done. I do it with my other podcasts, too. We got our first like, one-star review, but there's no comments and I just want to know, like, why? It's like when you look at a restaurant, and it's like all five stars, and there's just one person who's like, one-star, I just want to know. MEGAN NEFF: You want context for it, totally. PATRICK CASALE: I want context. MEGAN NEFF: Yeah, yeah, that hurts a little bit. PATRICK CASALE: Yeah, I get it, but that's just the reality. MEGAN NEFF: And I could see why we're not for everyone, right? Like, for one, anyone who's not in the neurodivergent affirming space, I could see having reactions to us. PATRICK CASALE: Absolutely. MEGAN NEFF: And I don't know, maybe not everyone loves listening to two [INDISCERNIBLE 00:47:51] people. PATRICK CASALE: All I can say is that I love all of you who are listening, and supporting, and consistently tuning in, and consistently offering feedback, whether it's constructive, positive, whatever, that's what we want. We want feedback. So, if you have it, if you have topics that you want us to cover, if you have things you just want to share, check out our Instagram page, Divergent Conversations. You can post comments, you can send messages, whether or not we respond to those messages, that's a different story. I'm trying to limit the pings and pongs as Megan would say, but we do want feedback and we really do value your questions, and your thoughts as well. And we appreciate the fact that like, in less than two months there are 30,000 of you listening and that feels amazing. And I think that there feels like there's a trickledown effect from just having these conversations and sharing these episodes, and Megan and I just showing up as authentically and vulnerably as we can. MEGAN NEFF: And that's [INDISCERNIBLE 00:48:59] goodbye. Now [CROSSTALK 00:49:02] awkward. PATRICK CASALE: Okay, I'm losing my voice so saying goodbye is going to be fun. MEGAN NEFF: Me too. PATRICK CASALE: To everyone who listens to this podcast, to Divergent Conversations, our new episode's out every single Friday on all major platforms and YouTube. You can like, download, subscribe, and share. And we will see you next week. Goodbye.
Do you ever feel like your immune system is working against you? You don't know what's wrong, no one else knows what's wrong, you keep doing medical tests and it's coming back normal or the pieces don't add up. Autistic people often experience a myriad of chronic health conditions and nervous system dysregulation that leaves us feeling terrible, overwhelmed, and with tons more questions than answers about what's going on with our bodies. In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, talk with Dr. Mel Houser (she/they), an autistic family physician, about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), mast cell activation syndrome (MCAS), the connection between Autism and nervous system dysregulation, the struggles with the healthcare system and getting treatment for these symptoms, and the importance of becoming a “detective in your own life.” Top 3 reasons to listen to the entire episode: Understand the role that daily experiences play in potentially triggering health conditions or pain through nervous system dysregulation. Uncover the complexities of living with neuroimmune conditions like ME CFS and mast cell dysfunction. Learn how to get support to address the unique challenges that neurodivergent individuals face in accessing mental health and medical care. More about Dr. Mel Houser: Dr. Mel Houser (she/they) is an Autistic family physician with a clinical focus on providing primary care for neurodivergent patients across the lifespan. She is the Founder and Executive Director of All Brains Belong VT, a nonprofit 501(c)(3) organization in Montpelier, Vermont that uses universal design principles to provide neurodiversity-affirming medical care, social connection opportunities for all ages, and neurodiversity-related educational training. At age 37, Dr. Houser was diagnosed as autistic, ADHD, dyspraxic, dyslexic, and dyscalculic. She is also the parent of an autistic 6-year-old, who is her guru of so many keys to the universe. Website: https://allbrainsbelong.org Instagram: @allbrainsbelongvt Check out All Brains Belong's new project: Everything is Connected to Everything: Improving the Healthcare of Autistic & ADHD Adults provides health education resources to support people with this constellation of intertwined conditions, as well as strategies for discussing the project with medical providers. There is also a Clinician Guide with a combination of evidence-based practice and the lived experiences of more than 100 Autistic and ADHD community members. Here's the link to the project: https://allbrainsbelong.org/all-the-things Transcript PATRICK CASALE: Hey, everyone, you are listening to the Divergent Conversations Podcast. We are two neurodivergent mental health professionals in a neurotypical world. I'm Patrick Casale. MEGAN NEFF: And I'm Dr. Neff. PATRICK CASALE: And during these episodes, we do talk about sensitive subjects, mental health, and there are some conversations that can certainly feel a bit overwhelming. So, we do just want to use that disclosure and disclaimer before jumping in. And thanks for listening. MEGAN NEFF: Well, Mel, I was so excited when you reached out to me over email. Patrick and I have been talking about how we just keep getting sick. I've been dealing with long COVID. And we've been saying probably for the last four weeks we've got to do an episode on health. So, you're an autistic physician, this is your, like, specialty. I'm so excited you're here. Before we started recording, I was talking about like, "Oh, we don't do bios." Which I actually love. It feels more organic. But it does put a little bit more pressure on you to explain to the audience who you are and give us context. So, can I hand it over to you to give us some context of who you are, why this conversation is important to you around autism and health? MELISSA HOUSER: Definitely, and thank you so much for having me. So, yes, I am an autistic physician. I am the founder and executive director of a nonprofit in Vermont called All Brains Belong. We provide neurodiversity-affirming medical care, in addition to social connection opportunities for kids and adults, plus, community education. And in my medical practice, I am providing medical care, both primary care and additional support for the conditions that we'll talk about today for kids and adults. And so, not all of my patients are neurodivergent but most are. And the majority of my autistic and ADHD adult patients suffer from a constellation of related medical conditions. And the problem is that not only do many medical providers not know that these conditions are related, the standard management of some parts of this constellation, and in my practice, we would really call it all the things because mostly all the people here have all the things, so… MEGAN NEFF: I love that, all the things. That's a good hashtag. MELISSA HOUSER: Yeah, so the standard management of some parts of all the things make the other parts of all the things worse. It's like internal conflicting access needs. MEGAN NEFF: Absolute, I love how you unpack that. A lot of the folks I work with and myself included will talk about that of like, well, I could do this medication for this diagnosis, but then, this other diagnosis I have is going to be negatively impacted by that treatment. So, it's like this wacky mole of health conditions. Yes, so having a provider who can do the zoom out which Western medicine is not historically great at, the, like zoom out, let's look at this whole body, and how its integrated. I get the sense you're absolutely doing that. I love the language of constellation. I feel like that is a really integrative way of thinking about it. I'm curious what you would say are some of the like, big planets in the constellation. Also, I love how we're like co-creating a metaphor here as we [CROSSTALK 00:03:51]- MELISSA HOUSER: I love this. Yes, like, yes. So, I've been thinking about these "planets" as like buckets. So, this constellation includes something in the allergy immunology bucket, something in the connective tissue bucket, something in the gastrointestinal bucket, something in the sleep bucket. MEGAN NEFF: That's that. MELISSA HOUSER: Yeah, great, right, right, yeah. Something in the nervous system or neuropsychiatric bucket, something in the metabolic or vitamin absorption bucket, and something in the dental face and jaw bucket. And- MEGAN NEFF: Oh, that's a new one. I didn't know about that. MELISSA HOUSER: Yeah, yeah. And so, one of the things about this is that many people go often decades with like, maybe some like prodromal mild symptoms, and then because these are all neuro immune conditions, meaning they impact the nervous system and the immune system, and like the system's crosstalk, the mast cells, which we can talk more about, anytime the neuro immune systems get triggered by something, whether that be infection like COVID, for example, or surgery, or a concussion, or like, you know, trauma, you know, physical/emotional trauma, any kind of trauma, like these, or pregnancy, or menopause, or like just any trigger to the neuro immune systems, these conditions can get worse and for many people, they can get a lot worse. MEGAN NEFF: So, not that I'm going to treat this like a consult, but this feels like a consult question. So, for me, I had two very complicated pregnancies as well as two pregnancy losses. So, pregnancy, that whole season of life was difficult for me. But both of my two labors, complicated and did C-sections, my recovery to C-sections was brutal. And I always attributed that to the fact that I'd had a 36-hour labor and uterine infections. But based on what you're saying about surgery, is it possible that my difficulty coping post-C-section was actually related to organic things going on related to being autistic? MELISSA HOUSER: That is certainly possible. And in my practice, we see surgery, both from… there's all these different aspects of surgery, that's like a whole other podcast episode maybe. But like, when we think about, you know, aspects of connective tissue, for example, many autistic ADHD people have a condition called Hypermobile Ehlers-Danlos syndrome. So, like. wound healing from a connective tissue standpoint. Like, we just maybe don't heal well. And then, like, again, the autonomic nervous system aspects of, you know, maybe there's an impact in like blood flow, and maybe there's an impact in like, blood pressure, and heart rate, and like, all these things. Yeah, all of it, it's all related. But I think the take-home point is that everything's connected to everything. And I think patients know that. It's the medical system that's so like, fragmented and siloed with like the body parts are treated as separate entities, but like, we know everything's connected to everything. And you know, I love, Megan, you're talking about zooming out. You know, it's kind of like, you know, like on Google Maps, and you're so zoomed in, you don't even know what [INDISCERNIBLE 00:06:52] that you're on. Like, that's what goes on in healthcare. PATRICK CASALE: Yeah, I think this is such an important topic because so many medical professionals don't look at it in that perspective, or are not neurodivergent affirming, in general. And that [INDISCERNIBLE 00:07:08] to impact everything in terms of even like seeking out treatment, seeking out support, being comfortable disclosing your own autistic diagnoses sometimes can feel really challenging and triggering as well. I was telling Megan, like, I'm 36 years old, I can remember being sick all my life, like getting mono at super early ages, in like second and third grade, being out of school a lot. And now my career has taken me to a place where I travel pretty often, and I'm sick constantly, whether it's upon arrival, or when it's upon landing, and coming home. And the immune system just feels like it can never catch up. And I just started to think about how much association there was between the way an autistic nervous system and body heals and recovers, and also, responds to stimuli, and just responds to immunity, in general. And it's just fascinating to start thinking about it from this lens. MELISSA HOUSER: Yes, and a good search term is myalgic encephalitis chronic fatigue syndrome, MECFS. So, MECFS is this really complicated neuro immune condition that impacts multiple organ systems. It's part of the cluster, it's not its own thing, it's part of it. You know, and many people, for example, think about long COVID as being MECFS triggered by COVID. And the thing about MECFS that's really important, and, you know, patients with MECFS, which is, like, for any people's triggered by illness, you know, doesn't have to be COVID, it could have been like, you know, Epstein Barr virus, which is the virus causes mono, like you're saying, you know, Lyme. There's like all these things that kick off MECFS. And what we know is that one of the common hallmarks of MECFS is something called post-exertional malaise, PEM. And PEM is the consequence of, like you just said, the body doing too much. So, you tell me the story of every time you go do something too much your neuro immune system responds. And what happens is if you push through post-exertional malaise, it actually prolongs recovery. And so, and this can be, you know, physically pushing through, this can be emotionally pushing through, a cog really pushing through, and like you think about it, like, that is daily life for many neurodivergent people to survive in this world that is not built for us. PATRICK CASALE: Yeah, Megan and I talk about that constantly about the fact that we're both very privileged to work from home, to work for ourselves, to have a lot of privilege in terms of employment. And I think about it, like, I'm intentionally placing myself in situations that are going to make me feel this way, but a lot of people don't have the choice, and have to go to work from a 9:00 to 5:00, or have to show up in large communities of people, and just thinking about how much impact that has on both the body, the immune system, and the nervous system, and not just feel pretty constant, and feeling like there's not a lot of escape from that in a lot of ways, either, in terms of recovery. MEGAN NEFF: Mm-hmm (affirmative.) MELISSA HOUSER: Yes, yes. And like when you think about, like, zooming way out, when viewed through an equity lens of like who gets to show up in society. And so, you have these layers that we might talk about like a lack of neuro inclusion. But like, if you don't have, like, the privilege of autonomy over like the safety of the air you breathe, or like whether you, in fact, are forced because as a survival requirement to put yourself in situations that harm your health, and there's so many layers of that. MEGAN NEFF: I think what really complicates it, you know, when I hear you talking about MECFS or some of these other conditions, these are not conditions that are well recognized by most doctors, and so, the experience, and then, especially, if you're a high masking autistic or ADHD person, the experience of chronic invalidation from the medical community that a lot of us experience of like, "There's something wrong with me, I'm tired." Like, I remember what I was at the height of my fatigue, I had gone to a naturopath who was like, "Your adrenals are…" Like, "You're producing cortisol of an 80-year-old woman." And I was 31. And I went to my Western doctor, and I showed her these, like hormone tests, totally dismissed. And then, she's like, "Well, you seem kind of emotional." Because I was really anxious talking to a medical provider, "How about we start you on an antidepressant?" MELISSA HOUSER: Hashtag health care, right? Like, this is what goes on. MEGAN NEFF: Yeah. So, that, like, chronic diffuse, just feeling of unwell paired with chronic invalidation is just, I'm trying not to swear, but like, I will swear here, it is a mind fuck. MELISSA HOUSER: Yap, yap. Amen to that. So, you know, it's really hard. And I can send you a recording from a free educational that my organization put on last month about the health care system, and like, everything you just said. And so, we had a panel of clinicians, medical clinicians talking about, like, the system. So, a lot of times it's not the individual healthcare provider who's like setting out to, like, thwart and invalidate the patient. It's the system is thwarting and invalidating the clinicians, which, like, interferes with full access to one's cortex to like perspective taking, you know? What's the consequence of saying that thing right now to that person? Like, it's everything. MEGAN NEFF: I love that Mel. So, I think an unfair burden gets placed on the providers, and the clinicians, and people don't often realize. So, I used to work in hospice, people don't often realize like, these medical providers are so booked in their days and like, it is like the system, like there's a reason so many medical providers are experiencing burnout, moral injury is so elevated in the medical community. So, this is not like medical providers being terrible humans, this is a much, like, the context around this is so much bigger, and I appreciate that you could bring that in. MELISSA HOUSER: Yeah, like, it's, you know, healthcare system is the villain, not the individual people within. MEGAN NEFF: Right, right. They've got 20 minutes with you, like 20 patients that day, and yeah. PATRICK CASALE: And if we're being honest, most of the medical model is set up to just treat symptoms, right? Like, we're treating symptomology. We're saying, okay, if this is what you're explaining, and experiencing, this is how we fix it and alleviate it. And for autistic, or ADHD, or any neurodivergent human, it's so much more complicated than just saying, "Oh, Megan's emotional right now, let's start an antidepressant." Like, that's just a quick band-aid fix that does not actually zoom out, as we're saying, and take into consideration everything that's going on behind the scenes. But if you don't have time to take in to consideration everything that's going on behind the scenes, it's a double-edged sword. It's like where do you fix the problem? And how do you alleviate that? I was telling Megan, yesterday, I have a healthcare collective that I'm a part of here in Asheville. And my PCP I think is quite open-minded, and really wants to be holistic, and integrative, and perspective. I sent her Megan and I episode on neurodivergence and sleep because we were talking about feeling dismissed when you go in and talk about sleep. And the issue is like, "Have you tried mindfulness? Have you tried relaxation techniques? Have you tried this? Have you tried this?" And we're like, yes, we're fucking autistic. Like, I've researched everything under the sun that could help me sleep more than two hours a night. I promise you, anyway. She messaged me yesterday and was like, "I listened to your episode. I can't believe how dismissive I came across. I'm so sorry for that. And can you help me navigate how we can better understand how to help you sleep and rest?" And I thought that was so unbelievably validating. And I was like, "Okay, I can see this person and feel really comfortable here." MELISSA HOUSER: I mean, this person cued safety right there? Like, "Oh, I just got chills." Like that, yeah, right. There are people who get it and can come to get it. So, and I don't know if this will air, or when this will air, or whatever but All Brains Belong has for the past year, we've been creating a free resource both for patients and for medical providers to different versions about this picture of all the things to just like be available of like, here's, you know, what's going on, here are some things that might help. And it has been about really bridging the double empathy problem, where, you know, when we think about, you know, the questions, or even the style, the way of clinical interviewing that medical providers are trained in, like, does not work for all brains, right? So, like, the medical writers are often not getting the information because they're not able to elicit the information. Like, the patients will tell you what's wrong, if you can, like, cue safety, and allow people to have access to their own cortex, to communicate in their own way. And we did focus groups of autistic adults, about like the words they use to describe their experiences. And so, that's all like built in to the tool. And so, like, when it's out, it'll be out like, maybe in like, three weeks. You know, I can send it along. MEGAN NEFF: That's amazing. That is like one of the top requests I get is, can I have like a one-page handout to help me advocate with my medical providers? I'm so glad you've created that or are creating that. We'll absolutely link that because I think that'd be a really helpful resource. I like how you keep going back to cueing safety. I had a medical appointment last week and it's interesting. I'm not emotional. I've talked about that on this podcast. The one place I cry is in medical offices. Like, it's not intense, but it's like I'll say something vulnerable. And I think it's because I'm so prepared and scared about being misunderstood that it is really like the one place I cry. MELISSA HOUSER: Yeah, I know, that resonates with me a lot. I, in general, don't seek a lot of health care for all the things. I have all the things also- MEGAN NEFF: [CROSSTALK 00:17:54]. MELISSA HOUSER: Yeah, except very health care avoidant, right, exactly. But, yeah. Yes, like your nervous system is like, it's a trauma response, right? It's just, you know, you're waiting for the next hit. MEGAN NEFF: Yeah. PATRICK CASALE: Well, Megan and I have also talked about, you know, as mental health professionals how often autistic adults or adolescents, young adults won't come into a therapy room and say, "Hey, I'm autistic." And therapists will then say, "I don't work with autistic people, this is not my area of expertise." And refer the person out the door. And how invalidating and dismissive that is. So, if we take that in the mental health realm, and then, go into the medical world, there's almost this additional layer of fearfulness and vigilance around disclosure, and feeling safe, and feeling like you have to prepare to be dismissed or misunderstood, or you already feel dismissed and misunderstood in most areas of your life. So, it really does complicate seeking out treatment and support. And I think myself, like, talking about just chronic health conditions, people in my life, you know, especially, like family members, or friend groups, or probably like, this is all hypochondria, like this is like you're sick all the time, there's always an issue here, like there's always something going on. And that can feel really invalidating and shame-inducing as well to constantly feel like, I always feel this way and I wonder what it would feel like to have a week or two where you're like in optimal health as a 35, 36-year-old human being. MEGAN NEFF: You know, one thing I've said my whole life pre-autism discovery was I just wish I could have a day in someone else's body. I just want to experience it. And I think it's because it's like, I don't feel like what I'm feeling is what other people are describing, but I don't know that because I only have my subjectivity. So, that's been my fantasy since I was a child, can I just experience someone else's body for 24 hours? MELISSA HOUSER: Yeah, so what our model at All Brains Belong is that connection is the path to health. So, we do a lot of group medical appointments, for example. MEGAN NEFF: I love that. MELISSA HOUSER: So, not only do we have this piece of like, I learned for the first time that I'm autistic and/or ADHD, but I'm also like, I have this thing, and it's called all the things. And the thing you've been saying was happening, it has been happening. And guess what, there's like a ton of other people who are experiencing this also, and you have fun together, and you learn together, and you learn how to adapt the environment, and the routines, you know, to meet your access needs and, you know, be promoting neuro immune health. MEGAN NEFF: I love that, I love that, this community of all the things. Okay, I'm going to ask a question, and if you're like, no, I just don't want to go there, like just- MELISSA HOUSER: Okay. MEGAN NEFF: …tell me. I noticed the first few years or the first year of entering autism advocacy space, I was really cautious of talking about anything related to gut health, nutrition, because for so long the message was, if you cure your gut, you will cure autism. And so, I wanted to steer so clear from any of those reductionistic stories of autism of this health thing or like if you cure your nervous system, you cure autism. I've heard that too. So, that nuance of autistic people are more vulnerable to a ton of health conditions and supporting it supports our well-being, and no, we're not trying to cure autism, that sort of middle line of here are some things you can do to support yourself. Like, do you ever experience tension around that or? MELISSA HOUSER: Yeah, no, it's interesting. I, like, sick mono-tropism. I, like, forgot to experience tension around that because I like experience tension by so many other things. So, I would say that it's not that these neuro immune conditions, like I read this book about like, some component of all the things that was talking about, you know, it had like a curative narrative, and it was gross. Anyway, whatever, I won't even like name the book. But it is worth like throwing that narrative out, like I am autistic, I have always been autistic, I always will be autistic. And in fact, it is the fact that I am autistic that allows me to zoom out and see the whole pattern because that's, like, what my brain does, right? So, it's that. These patterns are more common because of the way that we're wired. And most of the environment is unsafe, it's the environment that's unsafe. And so, that is why we're going to have a dysregulated autonomic nervous system, we're going to have a dysregulated immune system, we're going to have mast cells, which are a type of immune cell that like crosstalks between the nervous system, and the immune system, and the soft tissue, there's mast cell receptors on every organ system, like, so it's a good search term because that like managing your mast cells is like part of how you support this cluster. And it's not because we're trying to like, not be autistic anymore, we're trying to like, not be in pain, and we're trying to not have a blood pressure plummeting, we're trying to not have you know, trouble breathing, we're trying to not have a GI tract that's completely flipping its lid all the time when we eat. Like, that. So, I would just name… MEGAN NEFF: Yes, I love that. And then, this is where also like mental health, right, so many of the things you just named are going to cause mental health issues, right? MELISSA HOUSER: Of course. MEGAN NEFF: A dysregulated nervous system, fight/flight anxiety. So, for therapists like Patrick and I, you know, we aren't typically trained to look for, like nervous system dysregulation as the cause. So, we'll go straight to like, here's some emotion regulation strategies. Not that those don't have an impact on nervous system, a lot of emotion regulation strategies are downregulation strategies, but I find adding an element of nervous system work in therapy for autistic people is so important. MELISSA HOUSER: I would add to that because like, what you're both bringing to the community is so critical because, you know, not only do we have patients who are seeking mental health support from like, neuro normative therapists that are like, you know, pointing out their irrational thoughts or something, but also, we bring this layer now, in the context of all the things that not only is emotional dysregulation, you know, equal, nervous system dysregulation, actually, making the mast cells more pissed off, actually, impacting the immune system. But the other way goes too, so if you have, you know, for example, where I am in Montpelier, Vermont, there was just really devastating floods. So, like, everything is wet and there's all kinds of crap in the flood water, and so, you know, a lot of people's mast cells are flaring. And so, what they may feel in their bodies may not be, "You know, I feel my mast cells." Like, they just feel terrible. They don't know what kind of terrible they feel because it's not like one or the other, it's everything because everything's connected. MEGAN NEFF: Okay, so my internal clock just went off around how long we've been talking. And one thing I'm trying to be mindful of is as much as we talk about some of the hardships and the challenges we experience around navigating healthcare, I also want to have some words of encouragement, or empowerment, or just really practical advice that people can take away. So, I'm curious, kind of, what do you recommend to people, if they're listening to this, and they're like, "Oh, my goodness, I think maybe I've got all of the things but I didn't realize it." Like, what's next steps for them? Especially, if they're struggling to navigate with their medical team, things like that. Like, where do you start with people? What are some of your recommendations? MELISSA HOUSER: I think, like, first step is to figure out that this cluster or this constellation of related medical conditions may apply to you. And, you know, first off, I need to say the disclaimer that of course, this is like general education, this is not medical advice. But like in general, what people find helpful is first step to recognize that this pattern applies to them, and then to learn about the pattern because a lot of what we talked about earlier were some parts of the management of all the things, maybe other parts worse. A lot of times people know that, they know it about themselves, and there's also a ton of information out there amongst the neurodivergent community. They may not know it, they may not like, you know, know that all these conditions are connected or, but a lot of people do because they feel it in their own bodies, and there's a ton of information. And I think what we've tried to do at All Brains Belong is like, synthesize all that information and put it in one place. But I think figuring out the things that make you feel better, that don't make you feel worse, like stopping the things and working with, you know, your personal medical provider to, like, figure out what are the things that I'm doing that might be making this thing worse, eliminating those things that are maybe making you worse, you know, is the first step I think. And a lot of times, especially, you know, I would say like, if you're going to pick like one search term, I would read about mast cell activation syndrome, MCAS because if you can understand mast cells, this is a cornerstone of this constellation. MEGAN NEFF: So, I actually went on a rabbit trail a little earlier this year, and I was like, "Oh, maybe this is the missing thing." I've then, like, took a one-hour course on it. And like, in the course, the provider recommended a ton of vitamins. But I walked away from the course and I was like, "I don't actually know how to implement this or start." MELISSA HOUSER: Yeah, yeah, yeah. And I think, like, figuring out what your triggers are is the most important thing. And so, like, I'll give a personal example, sometimes when I do podcast interviews I shut off my air purifier because it makes a noise, and then, I feel terrible afterwards, and then, I'm like, "Huh, I think it took like the, like, sixth or seventh time over the past year." And I'm like, "Really, it's every podcast interview, what is that? I'm not stressed out." Like, I shut the freaking air purifier. There's something in the air that my mast cells are responding to. So, like, you have to be like zooming out, you feel like zoom out on your day, on your week, on your month, and like, identify these things, there's no test. Like, there's going to be no test that says, "You know, my mast cells are pissed off by something in my office." Like, we're not going to have that. It's like being a detective in your own life. Or I've never had a problem with dairy, but after I had COVID I can't eat dairy anymore. It took me like a few weeks even to be like, "Wow, I feel so terrible." And I realized that's what it was. And so, yes, you know, there are a variety of medications and supplements that can be helpful, and like, you know, life-altering for many people in the context of all the things. But trigger elimination is really important. MEGAN NEFF: I love that idea of become a detective in your life. PATRICK CASALE: My mind immediately goes like to the cynical place, though, like when it's all the things, and then, you're like, I have to identify all of the triggers and all of the things. It feels very overwhelming. So, I think for our audience, like, one thing at a time, you know? Try really hard to start small. So, that's a good example of having like, major throat surgery this year, and still being impacted by it. MELISSA HOUSER: Sorry to hear that. And possibly related to all the things, right? So, yeah. The other thing is, Patrick, you brought up sleep a little while ago, that is a critical starting piece as well. When I listed the different buckets or like Megan's use of planets, you know, one of the things I listed was face, teeth, jaw. So, many of us we have long faces. You know, we have more of an oval-shaped face as opposed to a round face, right? Like, the three of us, like, look at our long faces. And so, we have, therefore, a narrower airway. And if we also have Hypermobile Ehlers-Danlos, for example, we may have a high-arched palate, her palate though that like also is making the airway more narrow. And so, there's like extent, I should have said this earlier, each piece of all the things is known to be more common in autistic people and some of which are known to be more common ADHD which, of course, are like, you know, almost superimposed Venn diagram circles, right? But the idea being that, you know, these pieces are known by healthcare, but they're known as pieces, not as a whole entity. So, like, yeah, you might say, yes, you know, I know that obstructive sleep apnea, for example, is more common in autistic people because that is known, and having, you know, obstructive sleep apnea is more common in people with long faces and higher arched palates, that's known. Obstructive sleep apnea is more common in people with Ehlers-Danlos Syndrome, that's known. Put it together, zoom way out, this is one thing and a lot of us have sleep apnea. And so, you know, in my medical practice that is a starting place in many people, is identifying what's going on with sleep because it is so much bigger than like, like the examples you gave Patrick of like, you know, do you have a bedtime routine? Like, this is neuro immune, right? So, that is what I have to say about that. Fixing your sleep is essential and like if you don't fix your sleep, it's very hard to get the rest of all the things better. MEGAN NEFF: Yes, I talk about that a lot, too. Same thing for mental health, it's like well, if sleep's off the rails, let's start there. Okay, so now I'm super curious, one thing that I hear and know is also common among autistic people is our voices tend to be raspier or just have a different tone. Like, both my kids have done speech pathology. I know and I talk more from my throat, so I've kind of a raspy voice, is that connected to the like high arch, and what you were just describing about throat jaw stuff? Or is that a different mechanism? MELISSA HOUSER: That's really interesting. I've never been asked that question before. That's a pattern I certainly see a lot and that I personally experience. And I wonder… I would imagine, I'm just like speaking off the cuff, I have no, like, literature to support what I'm about to say. But it's probably multiple things, right? So, raspiness might be because there's like mucus on the vocal cords because there's mast cell dysfunction. And so, you know, like, the allergic responses to things in the environment, so that might be playing a role of it. There's also like the dyspraxia component of like, ineffective or inefficient motor plans of like, when I speak, you know, I'm using, like, all of my upper body at the same time. I'm turning all of it on because like, that's how I learned to do it. So, I keep doing it this way, at almost 40 years old. Or, you know, if I have, you know, Hypermobile Ehlers-Danlos syndrome, and I'm working harder to hold myself upright, my diaphragm might get stuck, and I'm using my neck muscles to breathe, and so, these muscles get really tight, and so, that tension may be impacting, you know, vocal cord usage. Anyway, I would imagine it's like many, many things that are connected to all the things because everything's connected to everything. MEGAN NEFF: Yeah, yeah. PATRICK CASALE: So, it's blowing my mind. I'm like, I wonder if my [INDISCERNIBLE 00:37:34] is diverticula? [CROSSTALK 00:37:36] 65, that's a whole conversation that we can go into, but it's the third issue that I have at 36 years old that I've had two surgeries for that impacts my vocal cords, that impacts everything, and it's just interesting to start conceptualizing it from this lens, and the recognition of everything being so connected, and yeah, potentially impactive. MELISSA HOUSER: All that's related because it's definitely related, it's like on the list, is that connective tissue goes to the whole body, and so, if you look at the connective tissue of your esophagus is extra stretchy than like, the outpouching within the connective tissue. Like, you push it through same way that like, a lot of autistic people who struggle with, like chronic constipation, it's because the colon gets extra stretched out, and then, loses it squeeze. You know, I mean, there's a lot of ableism in healthcare, right? But, you know, of course, that autistic person is constipated because, like, look at their terrible diet or look at their inactivity. It's like, no look at their connective tissue. MEGAN NEFF: So, I'm having like both aha moment, and kind of like an oh, shit, moment. Like, I think I sometimes feed into reductionism, partly, because my head just would like, it would be too much to contain. But like, I think I probably over-attribute a lot of autistic struggles to interoception issues and autistic burnout. I actually had this thought a few weeks ago when I was reading more on the research on autism and chronic fatigue of like, yes, burnout, but like, also, all of these, like, all of the things that you're describing, or even hearing that thing about the colon and constipation, I didn't know about this stretchy tissue aspect of it. So, there's more than interoception struggles going into that. It's kind of overwhelming. MELISSA HOUSER: It is overwhelming. So, like, I wouldn't say that, like, oh no, I like erred on the side of saying things were attributable to interoception. Like, there are also interoception differences, but also, when you're Hypermobile because for anyone, you don't get feedback, you don't get like proprioceptive feedback until you're at the end range of motion. And if you're like extra stretchy, you go past, you know, what someone else's end range of motion is. So, you don't feel your body, you don't get that proprioception until you've gotten big movements. So, you know, when, like, I don't ever thought about this until, you know, I learned about all the things. But you know, I don't think I really feel my face unless I'm like smiling really, really big or like I think I'm smiling, but I'm really not. And the people are like, "Why are you so upset? "I'm like, "I'm not." Anyway, all that it's like that. So, it's [CROSSTALK 00:40:20]- MEGAN NEFF: So, do people feel their face? MELISSA HOUSER: I think people feel their face. I think they, like, know like what facial expression they're making [CROSSTALK 00:40:29]- PATRICK CASALE: We can have so many conversations on this [CROSSTALK 00:40:33]. MEGAN NEFF: …and you're listening to this, like, I want people to comment if they feel their face. PATRICK CASALE: Yeah, when you see the reel for this video, or for this episode, please comment if you can feel your face. We would like to know, this is part of our research. MEGAN NEFF: Well, it's the same thing with interoception, when I read about how interoception is measured, it's you connect a person to a machine and ask them to detect how many heartbeats they've had, and then, how accurate they are. And I was like, "Wait, what? People feel their heartbeat." Like, unless you're, like, sprinting- MELISSA HOUSER: Well, there's like a- MEGAN NEFF: …but otherwise no. MELISSA HOUSER: So, the thing is, what's really interesting is, you know, you could feel like, I don't feel hungry until I'm like ferociously hungry, and then, can like, no longer access food. But I feel my heartbeat all the time. And I feel all kinds of things all the time. Like, that was surprising to me to see how common that is, that like people might have, you know, an increased sensitivity to some types of interoception signals, but not to the others. MEGAN NEFF: Yeah, yeah. No, and that difference of, and I think that's really important too of like, some interoception might be exaggerated, some might be under, and then, it's really more about the differentiation that causes a struggle. Can you differentiate? Is it accurate reflection of what's objectively going on? Yeah. MELISSA HOUSER: And like what you explain to yourself, so for example, like in my medical practice, when people learn about all the things, and then, something happens, they have a narrative to understand it. So, to the extent that your mast cells are triggered by your autonomic nervous system being triggered. Like, so that's where this integration of, you know, nervous system regulation strategies actually directly impacts the immune system. And part of that is like, knowing what this is, and not like… I mean, it's not that you don't worry that because like, it's still like, uncomfortable, and we need to have it not happen because it's impacting your quality of life. But we don't, like, you know, that like special narrative of like, I don't know what's wrong, and no one knows what's wrong, and they keep doing tests, and they come back normal, and there must be something really very dangerously wrong with me, that triggers mast cells, triggers autonomic nervous system, therefore, makes your symptoms worse. MEGAN NEFF: I love that kind of tie-in. And I did this a lot when I worked with chronic pain, not that it's all in your head, that's a terrible message. But the story we end up telling ourselves about the pain signals will influence whether or not we get more pain signals or not. And I'm hearing that same as you talk about the narrative around your health conditions and what you're experiencing is going to actually influence your mast cells and influence your body's response because if your body thinks it's in danger, it's going to say, "Hey, we need to go on high alert." And that fight/flight activation. So, absolutely, not that it's all in our head, but that the story we tell ourselves about our experience will influence what's happening in our body, MELISSA HOUSER: Just from a nervous system regulation standpoint, how could it not? You know, it's part of like, one of the strategies that one… But the other thing that I would say is that, like in my medical practice, you know, many people know that they're autistic and/or ADHD, many people come because they're wondering if they're autistic or ADHD, but many people come not having anything to do with that. They come because their needs were not met by the traditional healthcare system. And amongst that group, that group is much more likely to have all the things and that group is much more likely to be autistic and/or ADHD. So, like, it goes both ways. And either way, when people just, you know, I would say very similarly for many people, when they discover their neuro divergence, that organizing narrative, like you said Megan, that organizing narrative is so… it can be like life alteringly helpful for many people so it is with all the things. Like, having a narrative to understand often like decades of your whole life of living in your body all through a single lens, that's the point. PATRICK CASALE: So, I think that we can have a whole series with you now because this is so unbelievably informative and honestly enjoyable. But I am always timekeeping for Megan's purposes, and we are getting close. So, I think that is a perfect way to wrap up with what you just said. And also, I think we're going to have like, once we release this episode, so many people Googling, "Can I see this practice in Montpelier, Vermont for health care?" And it's unfortunate, I wish that we knew about more practices within our country who are doing things the way you are doing them. It's really amazing. And I appreciate you showing up for the community the way that you are. MELISSA HOUSER: Thank you and I think, like, this is probably my, like, most enjoyable podcast experience. Like, this has been wonderful. PATRICK CASALE: I like hearing that. We are just going with the flow and seeing where it goes. And that's kind of been our routine since day one. And I think that's what works for us. And it's felt really, really enjoyable so far. MELISSA HOUSER: That's awesome. And I'll send you… when our All the Things resource is out, it's almost out, the flood was a setback. But we're still on track, we just have to do some… Because we also want to be using universal design principles in presenting this information. So, we have text, and we have graphics, and we just have to record some videos, and then, we'll be ready to go. MEGAN NEFF: So, yeah, I did want to ask Mel kind of so obviously, if people are in Vermont, they can come to your practice. But when I was on your website, it felt like you were also providing, at least education, but maybe not medical services to people outside of Vermont. But for people who might be interested in your work, like, are there ways that they can connect with you or connect with your center? MELISSA HOUSER: Yeah, definitely. So, first off, we do educational trainings that, yes, most of the trainings that we do are for organizations of a wide variety of types. But we do have people who they are coming to learn about specific health topics. So, it's an educational consult. So, I do those. And so, it's not medical advice, it's not prescribing medicines or making diagnoses. But like, you know, we definitely have people who come and want to learn about all the things, so we definitely offer that. And then, we have free community programs. So, for adults, we have Brain Club, it's virtual, it's open to anyone, everywhere, and it's free. It's [CROSSTALK 00:47:15]- MEGAN NEFF: …it's open to anyone MELISSA HOUSER: [CROSSTALK 00:47:17] we have people… Like, last week we had somebody from the UK and somebody from Australia. Anyway, so it's open to everybody and like, it's a community education on everyday brain life. And we have, like, panelists, and presenters, and stuff, and it's really fun. And for kids, also, open to anyone, anywhere, we have Kid Connections. It's a friend-matching program. So, like, we connect kids based on their shared interests, like their shared [INDISCERNIBLE 00:47:42] and [CROSSTALK 00:47:44]. Yeah, that was a kid's idea. So, we have a junior advisory board, so this kid is nine-year-old. We were like, "How do you make kids feel like they belong?" "You let us do what we love." Holy crap, yes. So, anyway, that's what Kid Connections is. PATRICK CASALE: And where can people find this information for those that are like, "Oh my God, this sounds amazing." Where do they find that? MELISSA HOUSER: allbrainsbelong.org. PATRICK CASALE: And all of this information will be in the show notes so that everyone has easy access, and all of the links, and all of the information that Mel provided today. And we really appreciate you coming on and making the time. This has been really enjoyable and wonderful, wonderful resource for the community. MELISSA HOUSER: Awesome, thank you so much. PATRICK CASALE: And to everyone listening to the Divergent Conversations Podcast, new episodes are out every single Friday on all major platforms and YouTube. Like, download, subscribe, and share.
There are a lot of nuances of Autistic masking, and it's become a sensitive and polarizing topic these days online and in social media. With all the various opinions, information, and anecdotes out there, it can be confusing to understand what masking is, and how privilege and different social identities intersect with the experience of unmasking. Masking and unmasking impacts mental health, identity, and relationships in significant ways. In this episode, Dr. Megan Anna Neff and Patrick Casale, two AuDHD mental health professionals, delve deep into the concept of Autistic masking as well as share their personal experiences with masking. Top 3 reasons to listen to the entire episode: Understand how autistic masking is not just about blending in, as well as how it can be both beneficial and harmful. Identify ways that privilege, safety, and race intersect with masking. Learn strategies to address burnout caused by masking and, if desired, to unmask if you are in a position and place to do so. Masking can be a very charged and complex topic, so now, more than ever, we need to delve deeper into the complexities of autistic masking and promote understanding, empathy, and inclusivity. Resources: Blog Post: https://neurodivergentinsights.com/blog/what-is-masking-in-autism You can also grab the Autistic masking checklist when you sign up for Dr. Neff's newsletter: https://neurodivergentinsights.ck.page/51e276c041 Transcript PATRICK CASALE: Hey, everyone, you are listening to the Divergent Conversations Podcast. We are two neurodivergent mental health professionals in a neurotypical world. I'm Patrick Casale. MEGAN NEFF: And I'm Dr. Neff. PATRICK CASALE: And during these episodes, we do talk about sensitive subjects, mental health, and there are some conversations that can certainly feel a bit overwhelming. So, we do just want to use that disclosure and disclaimer before jumping in. And thanks for listening. PATRICK CASALE: In today's episode, we are going to talk about autistic masking and unmasking. And we want to just put out a warning that there are a lot of sensitive topics that are discussed and we just want everyone to be really mindful of that before starting to listen. And we just want to add that disclaimer to this episode. So, before Megan and I ever hit record, we always talk about, like, what do you want to talk about today? Because we never know until we hit record. But I think this is a good topic. And it's definitely one that we could, probably, have like a whole series on it in a lot of different… there's a lot of nuance here. MEGAN NEFF: Yes, nuance. That's a good word for it. And I hope that's what we can have today is a nuanced conversation on masking. Okay, this is autistic. I mean, but here's how I'm like if I was to put an agenda for our podcast, which we never do, but if I were, it would be like, define autistic masking, talk about the costs of it, and talk about the benefits of it. I think those are three, like, key anchor points for us to hit in our conversation today. Why I'm I the one bringing structure today? PATRICK CASALE: [CROSSTALK 00:00:57] episode. You are going to take away these three key takeaways just like an NBCC-approved training. And I like it. I think that we should define it. I think that's important. I think that, you know, because there's a lot of conversation about masking going on right now. So, I think it's important to define it, and I will let you do that. MEGAN NEFF: Yeah. So, it comes from the research of Laura Hall, who is, I believe, based in the UK. And again, I think her pronouns are she, her. I've tried to like learn about her, I've tried to figure out if she's autistic or not, but I don't see that anywhere. But I assume people doing a lot of research on autism are interested in it for a reason. But she's the one that did the research that got the female autistic phenotype kind of on the map, which we now know there's some problems with that phenotype. But that work is so fundamental for understanding non-stereotypical presentations of autism. And her and her research team also developed the CAT-Q, which is the Camouflaging Autistic Traits. And what is really cool about this is it's psychometrically robust. What that means is, it's past kind of the standards for something to be considered a reliable and valid assessment. So, this isn't just some, like, social media thing that's been talked about. This is something that is validated in the psychological research that this is, in fact, a thing. So, what is it? It's the kind of deliberate, well, there's three components. It's the deliberate suppressing of autistic traits. And so, that might be repressing, stemming, and repressing things that we do to self-soothe ourselves. And that's really important because we, as autistic, people have a lot of kind of natural things we do to self-soothe. Like, right now you're fidgeting with your hands. Yep, I will probably start pacing soon. And there's things we do that regulate our bodies. So, one component of autistic camouflaging is suppressing those traits. Another component is something called assimilation and that's where we're assimilating into neuro-normative culture. So, that might be like forcing small talk, or forcing ourselves to do things that aren't natural. People often describe them like they're pretending when they're in social roles. And then, the last one is compensation. And that's where we're learning social skills through watching people, watching TV. Perhaps, like for me, I'm sorry, I need to catch my breath. PATRICK CASALE: Okay. MEGAN NEFF: My long COVID is making it so it's hard to breathe and talk at the same time. So, I'm just going to catch my breath. PATRICK CASALE: Megan and I are both sick right now. And so, just a real glimpse into our day to days when we're here, we [CROSSTALK 00:03:57]- MEGAN NEFF: So, long-winded info dumps when your lung capacity is limited, apparently, doesn't go well. PATRICK CASALE: We are going to do an episode on autism, and chronic health conditions, and illness. So, I think that is something to just stay tuned for as well. MEGAN NEFF: Okay, yeah, so the last one is compensation. And that's probably what most people think, or actually, it's the first one, but I'm just saying the last. That's probably what most people think of when they think about autistic camouflaging or masking. That's where you are mimicking kind of neurotypical ways of communicating. I always have talked about it. Like, I have a running Google doc in my head. Like, I would watch people and when they would say a phrase I liked or they would use a hand gesture I liked, I would kind of take note of that, put it in my Google Doc, and then, I would copy that in different situations. So, those are the three components of autistic camouflaging. It's typically called autistic masking, but camouflaging is the more umbrella term that captures those three distinct components of what it means to camouflage your autistic traits. PATRICK CASALE: Thanks for giving that overview. I think that's really helpful when you have the terminology and the language to put to some of these experiences. And to really identify those three components. And I can think of so many examples for myself with, you know, doing exactly what you just said. I like that you mentioned it that way, like a Google doc that's constantly running, that you can constantly refer back to, that you almost have on like copy and paste mode where you're like, "Oh, it's this situation, paste this hand gesture, paste this phrase. Like, when I say this thing I notice people laugh, or I notice that people nod their heads. That makes me feel more comfortable in the settings." So, like, my immediate reaction to masking and camouflage, my immediate thought is exhaustion. That's always where my brain goes is exhaustion because I think so often, and you do a great job of describing like, sensory soothing, and safely unmasking, and techniques and strategies to do so. My immediate reaction is like this is constant for us people. Like, this is a thing that you're doing 24/7, a lot of the time, and I just think about how much energy is spent moving through the world like that. MEGAN NEFF: Yeah, I mean, it's really a double whammy, and like that feels like a child, like, I need a new phrase because whammy feels so childlike. But it's really a double whammy because on one hand… so the compensation part requires a ton of prefrontal cortex energy and that's where executive function lives, where our mind is making decisions because we're analytically deciding, okay, what does this situation need in this moment? We're not intuitively doing it like allistic brains. That requires a ton of prefrontal cortex energy. At the same time, we are repressing the things that self-soothe us, and that would self-soothe our amygdala and self-soothe our nervous system. So, we're both putting more tasks on the nervous system and on the brain while diminishing the things that would restore our energy and self-soothe. PATRICK CASALE: It's really a challenging Catch-22 because those things really don't go hand in hand, right? So, if you're repressing, if you're suppressing, if you're assimilating, if you're camouflaging, if you're trying to do any of the things that you listed, and you're suppressing your need to stem, you're suppressing your need to do any of the things that soothe your nervous system, the internal, like, push/pull, it's like tug of war in a way is really hellacious and it can be so, so, what's the word I'm looking for? It's so emotionally overwhelming. And I think that for so many of us, myself included, I experienced most of my world like that, where it's just constant, like, I can't find the words, but it feels like you're constantly thinking about every single action that you do, you're thinking about every single way that you respond, you're thinking about everything. And sometimes you're not even aware of the thought processes that are happening. And it's just so much energy. MEGAN NEFF: So, do you still do that, Patrick? Like, I know, you and I both have talked about the privilege of being self-employed and working from home, like, and I know a lot of the people you work with are neurodivergent, but not all. So, do you still… like, I would say, in my old life, what you just described, absolutely. And I'd come home exhausted and literally feeling sick. But I don't feel that anymore. But it sounds like you still do. PATRICK CASALE: Yeah, I think I still do. I don't think I feel it as intensely as I used to. But I noticed that there are a lot of interactions that I have to have throughout the day, even being self-employed, where I have to come in contact with a lot of people who I have to, or I feel like I need to present a certain way, or that in certain meetings I have to act a certain way. There's a lot of, as you usually use the phrase like pings and pings going on throughout the day. And I think there's just a lot of constant thinking about how I'm responding to things. I use the example of like writing an email, and then, like having to add punctuation, and having to add exclamation marks, and almost wanting to insert an emoji to like soften how I'm communicating and like even those little things build up, and it's certainly not as exhausting as it used to be when I had to go to an actual office and spend time with a large amount of people. I have much more control over what my day-to-day looks like and the sensory input that comes in. But like, I do notice it in a lot of interactions still throughout the day where it just takes an enormous amount of energy and capacity to get through them. MEGAN NEFF: So, okay, is there software developers listening to this podcast? I really think this is a good business idea. I mean, it perpetuates neuronormative standards. So, you know, that's my disclaimer, but developing like some sort of filter or app where you could use ChatGPT and have it translate, like autistic to allistic speech in the moment, like via text or via email because I think I've talked about that on the podcast before, I'll do that, I'll put it in ChatGPT. But if you had something where you could do that on Google, like, "Now allistic this email." PATRICK CASALE: That's a great idea. Like, almost like Google Translate, and then, you just hit that button. MEGAN NEFF: Yep, yep. PATRICK CASALE: Then my direct-like statement turns into this really like… MEGAN NEFF: Beautiful flowery. Like, "I hope this email finds you well." Like, every time I do it on ChatGPT, "I hope this email finds you well. I'm writing to…" PATRICK CASALE: "Best wishes, Patrick." Oh, man. Maybe a PS, "PS, I hope that your family is also having a great week." Oh, my God, yeah, yeah, but- MEGAN NEFF: So, does it, oh, did I interrupt? PATRICK CASALE: No, I don't know where I was going. MEGAN NEFF: I mean, this actually kind of is a natural segue into some of the costs of masking is that when we mask we perpetuate neuronormative culture because we're kind of normalizing that those are the standards, versus when we're visibly autistic, we're introducing the world to a different way of being, which I think moves society toward a more neuro-inclusive world. PATRICK CASALE: Yeah. And I think that, you know, you and I have, and you just alluded to this, too, is that when you're not privileged in the way of employment, in terms of owning your own business, creating your own hours, when you have to show up to a job, when you have to show up and maybe pick up your kids at school, or when you have to have interactions throughout the day or meetings that you did not create for yourself or agree to, there is so much mental anguish that goes into that, too, because you're physiologically, and emotionally, and psychologically preparing for each individual interaction. And I think that when you start looking at it that way, the barometer goes like way up, and the thermometer almost gets to like the boiling point, in my opinion. MEGAN NEFF: Yeah, yeah, that made a huge difference in our household and in my mental well-being, you know, as the mom or woman in a cishet marriage, when kids have birthday parties it's often expected to the mom takes the kids. Once we realized I was autistic, my husband started taking the kids to birthday parties. And it doesn't require the same energy for him as it does for me because birthday parties, taking my kids to them were like so sensory overloading, all of the socializing, the awkwardness of like, I mean, there's context shifting, or it's just terrible. I feel so much empathy for any autistic parent taking their kids to birthday parties. And once we knew that, we were able to shift, to do that, and reduce some of those situations, which has been really, really helpful. PATRICK CASALE: That's got to be helpful and that's fantastic for you both to be able to navigate that. I also think like you and I were texting because we just went through the Fourth of July. And that's another thing, like holidays, right? And gatherings, and family events, and work parties, and any situation where you are expected to show up, and expected to participate, and expected to be present. And I just think about how much I just do everything in my power to avoid those situations because I really can't handle them unless I have mentally prepared for months at a time. MEGAN NEFF: Yeah, no, I'm with you. And I think if it wasn't for my kids I would probably never go to things like that. And that's where, especially, for autistic parents, I talk about kind of value hierarchies, and there's going to be conflicting values. And so, for me, giving my kids the experience of family gatherings is a higher value than avoiding overwhelming situations. I associated to this so it's like going to be, there's not even a link here, I'm just sharing an association I had because it was a thought I had last night that… because my workbook this month is on masking and I've been reading on masking more. And I had this thought, I think there's two kinds of unmasking. We haven't even introduced the concept of unmasking yet. But I think there's two kinds of unmasking, probably more, but here's what's in my head. The first kind of a masking is what we do with ourself. So, especially, if you're a late-in-life diagnosed person, a lot of us don't know ourselves very well because one of the costs of masking is having a diffused sense of self because we're almost always kind of responding to the needs of others in the room, picking up what does this person need me to be? Okay, I'm going to adapt and I'm going to become that. So, we often don't know ourselves very well. So, I would say, that form of unmasking with ourselves where we're getting to know like, what brings me pleasure? What are my delights? What are my preferences? Like, what do I like? What do I value? I think every autistic person would benefit from doing that. Then there's unmasking that happens in public. And that is, okay, do I send this email in an unmasked version? Do I go to this meeting in an unmasked version or masked? And that I think becomes a lot more complicated of a question. And a person might choose to do that in some situations, but not in other situations. For some people, it's never safe to unmask in public. So, in my brain, it felt helpful to differentiate these two different kinds of unmasking, self-unmasking, and public unmasking. PATRICK CASALE: I think it's crucial to differentiate. So, number one, like self-unmasking, I think that's really important, like you mentioned, that diffused sense of self and really not having a sense of who I am? What do I enjoy? What brings me comfort? Any of those things. And it's interesting to start identifying those things later on in life too because you're like, looking back, like you're stepping outside of yourself, and like looking at this timeline? Like, did I enjoy any of this? Was this something that I wanted to be included in? Was this something I wanted to participate in? Or did I feel like this was a necessary thing for, you know, social adaptation and survival in a lot of ways? And that's interesting to pay attention to. And then, number two is very, very important to notate. And I'm glad that you named that. And there are situations where it's just simply never safe to unmask, and there are populations of people who are going to have significantly more risk unmasking as well. MEGAN NEFF: Yeah, yeah. And that's where, I think, the nuance is really important. So, part of why we're doing this podcast today is because I posted an infographic I made that I knew was going to be provocative, but I wasn't quite prepared for some of the feedback I got, especially, on LinkedIn, where I talk about the benefits of masking. And the reason I made that infographic is because I'm seeing a lot of kind of… I don't like using this word, but like a lot of rigid narratives around masking, a lot of universal statements. Like, someone was sharing how they were shamed for being a masking autistic, or statements like masking's always bad. And those conversations, I think, are really problematic because it's not leaving space to talk about the complexity of race, and power, and privilege, and safety. Or even the fact… and people will disagree with this, but I identify the ability to mask as a privilege. Like, there's plenty of autistic people I've connected with who have said, "You know, I would love the ability to mask. It would have protected me from blowing, it would have…" And so, I think the conversation around masking, I'd love to see a lot more nuance to be able to consider, like the issue of safety and race, for example. For a black person, unmasking is rarely safe. PATRICK CASALE: Yeah, not just for a black person, for a trans person. Then we start talking about multiply marginalized identities, and we're talking about very rarely safe spaces to unmask. MEGAN NEFF: Yeah, yeah. And I do want to credit, so a lot of my thinking around this has come from listening to voices like Sandra, @nd.narratives, Tiffany, @fidget.and.fries. They have got great… @nigh.functioning.autism is another one. And they did like an Instagram live, together, the three of them where they talked about some of these issues. So, I just want to credit that like, this is not me coming up with my own enlightened thinking. But the labor of black autistic people who have put a lot of thought into this. PATRICK CASALE: The nuances, so, one, just want to give you props for doing that, for crediting where credit is due. We hope to have some of you on the podcast, at some point in time, if you ever come across this podcast. MEGAN NEFF: Please come on. PATRICK CASALE: I think the nuance is so important and the nuances where things get really murky where people can, like you said, take some pretty rigid stance and make some pretty rigid blanket statements. And I don't think that gives room to have some of these difficult conversations about different experiences. And I'm trying to really choose my words carefully right now. But I do think that there is privilege in making statements like that as well, to have rigid blanket, black-and-white concrete statements about some of these experiences. MEGAN NEFF: You think that that is… Yeah, no, I think I know where you're going. Like, things like being anti-racist, or anti-transphobic, black and white statements are welcome there. Is that your train of thought? PATRICK CASALE: No. So, I guess what I'm saying is, I think there's privilege in saying, like, masking is just bad in general, or like- MEGAN NEFF: I thought you were saying that sometimes rigid narratives were good. So, I was- PATRICK CASALE: Those are good if we're like, I think, if we're, like, talking about, like, anti-racism is a good philosophy. MEGAN NEFF: Yeah, okay. PATRICK CASALE: Right? Yeah [CROSSTALK 00:21:24]- MEGAN NEFF: That's where I was like, okay, I'm trying to make sure I'm- PATRICK CASALE: Right, yeah. I'm sorry, I wanted to be clear, and I was not. But I think there's some privilege in saying some of the things that- MEGAN NEFF: There's privilege yes, absolutely. If you're going to make a blanket statement like that there's privilege in that. It's often, again, I don't want to make sweeping statements, but I do find it is often white people who make those sweeping statements who aren't considering their white privilege in the conversation. Okay, I just want to, well, maybe I want to say it. If I do say it, this will be triggering content, which maybe we will cut, Patrick. But what got me so upset yesterday was white people comparing, like telling people to mask is, and then, they made comparisons to race-based trauma. I won't say what they said. But they're making a comparison to a race-based trauma for telling autistic people to mask. And like, it kind of broke my heart that people who are in disability advocacy spaces, A, would like use that metaphor. Like, I'm shocked anyone is using comparisons to race-based trauma at this point, and B, that they want to be thinking about their identities from an intersectional frame. I just think there can be so much harm done in advocacy spaces when you aren't also thinking about your areas of privilege. PATRICK CASALE: Yeah, I mean, I agree 100%. And I hope we don't cut that. I understand why there's considering. MEGAN NEFF: I decided not to share specifics so that it, yeah. PATRICK CASALE: Yeah, but I think that's spot on. And that's what we have to try so hard in these advocacy spaces to have these complex conversations. But I try to see every side of things in these spaces, in these conversations because I don't want to, you know, I'm going to get it wrong at times, I'm going to say the wrong thing, and I want to hold myself accountable to that, want to learn as we go. And I just think that when you can get so entrenched in like, advocacy, and defending your own reality and identity, and it's, especially, newer, it's very polarizing. Like, it can take over and consume. So, I think it's very easy to just overlook certain things. And it just can create a lot of conflict. And I'm sorry that you had to experience that and… MEGAN NEFF: I mean, yes, I experienced it, but I feel more sorry for like what it represents in the autistic advocacy community. And, again, I've heard black autistic people speak about how racist disability advocacy spaces are. And I think because I've probably curated who I follow on Instagram, and who follows me, I've been kind of protected from that. But then when I had this post go viral on LinkedIn, I was exposed to that, and it was just really disheartening to like see it. But no, I mean, like I'm impacted by it, but my identity isn't on the line. PATRICK CASALE: Right, absolutely. And I think that this topic of masking, like I think we could do a whole series on masking honestly, and we could find, you know, anyone that could come on and talk about their own experiences, if they feel safe enough to do so, especially, for black autistic people or people of color in this community. I think it's so important to get all these different perspectives, too. MEGAN NEFF: Oh. PATRICK CASALE: Go ahead, sorry. MEGAN NEFF: Well, especially, like the added layer of when someone is code switching and masking that, like, we talk about how exhausting masking is. Honestly, I can't even imagine trying to run another software under that of code-switching. And yeah, I think it'd be great if someone felt safe enough to come on and talk about that experience because it is a really different experience than white masking. PATRICK CASALE: I think about my wife, like, you know, who's a black woman in America who works in law enforcement, and code switches constantly as someone in the south, and how exhausting that is, and like listening to her change her dialect, listening to her change, you know, her accent, listening to where she feels comfortable, and then, just adding that additional layer on top of it and just thinking about that. It also circles back to like me thinking about my privilege and my ability to unmask as safely as I've been able to do so. Like, I am a cishet white, and with a master's degree in America. Like, I have every privilege aside from the religious one, and my neurodivergent piece. But I think it's just so challenging to pick and choose your spots too, even to this day, where, you know, sometimes I don't want to openly disclose why I'm communicating the way I'm communicating, why I'm reacting the way I'm reacting. But I've noticed that when I'm able to safely do so, and this, again, is privileged ability to do so, that it makes a lot of interactions a lot easier for me. And it makes getting through the day more tolerable. And that I felt really grateful for because for so long I just had no idea what the hell was going on, and why I was engaging the way I was engaging, and why I was avoiding the way I was avoiding. MEGAN NEFF: Yeah, and that's where the lens of autistic masking, I think, is so helpful as it explains a lot. And for a lot of people when I'm working with them, and they're new to the diagnosis or for myself, I remember the like, it both just kind of disbelief and relief of like, "You mean like everyone isn't doing this?" Because that's the assumption, right? Like, we're not in other people's brains. So, of course, I'm assuming everyone else is coaching their body through social interactions or like having hours of pre-scripted conversations in private, and like plug-and-play scripts. Like, I assumed everyone was doing that, and sort of to realize that is not a normative experience is so eye-opening. PATRICK CASALE: It's eye-opening. I mean, I think it creates a multitude of emotions when you start to think about it that way because I do think when you assume like everyone goes through life like this, and then, you start to acknowledge, like, "Oh, this is not how everyone interprets social interactions, or how they go to work, or how they…" Like, one thing that stands out to me, and this is probably one of my most obvious autistic traits and tendencies when I'm in a neurotypical work environment is like meetings, I can't fucking stand them. And when they were happening, and people just want to talk, and it just seemed like people just wanted to meet, to meet, I'll be like, "Can we be done? Like, are we at the point where we're done?" MEGAN NEFF: Like, you would say that? PATRICK CASALE: And then, my supervisor would look at me and be like, "Don't say that." I'm like, "Oh, okay." I didn't realize I wasn't okay but why are we still talking? I don't understand why we are just sitting here to have this conversation. And why couldn't this just been an email? I don't understand. MEGAN NEFF: So, I think I get a little bit more tact than you. But I would also often be the person be like, "Okay, so it sounds like you're saying this, and you're saying this. So, like, maybe we can do this." Like, I would just be trying to like pull together the strands so that we could like be done because, yeah, meetings are so painful. Okay, I brought the structure, but I feel like we have diverged. I do want to… I mean, I realize that right now, recency bias, I'm more focused on the privileges of masking because of my experience this week. But there are really real costs of masking that I think are also important to identify. PATRICK CASALE: I wanted to name like four times already that you're the one bringing the structure today and I just really appreciate that so… MEGAN NEFF: Oh, cool. I'm glad you appreciate it and don't feel like I'm like cutting down the organic [CROSSTALK 00:30:02]. PATRICK CASALE: When I'm sick, when my brain is not, like, online as much as I would like it to be I need that. So, thank you. But yes, let's talk about the cost. MEGAN NEFF: So, yeah, the Rainmaker study, which I cite a lot when I'm talking about burnout, one of the things that that study showed was that autistic masking was one of the leading causes of burnout. And this is really important for mental health professionals to know, it is a kind of a pathway to depression and suicidality. And again, this makes so much sense based on what we were talking about earlier about the demands placed on the prefrontal cortex. So, very real mental health costs, something I often say, and I don't know, maybe I'll change my thinking on this later, but when I'm talking about high masking autistic people, I'll say, you know while we don't necessarily have the high support needs that people classically think of with autism, we have very high mental health support needs. And I think a lot of that's related to masking because it can result in depression, it does result in a more diffuse sense of self. If you think about the connections you're forging when you're masking, they're not going to be as authentic or meaningful, so our sense of belonging and connectedness suffers. I'm sure there's more costs I'll think of once I stop talking. What are some costs that come to your mind? PATRICK CASALE: Immediately what comes to mind is in the correlation in comorbidity with substance use, as we've referenced so many times. MEGAN NEFF: Oh, yeah. PATRICK CASALE: Just the reliance upon substances because of how much of an impact masking has, whether that be reliance in social situations, or when you get home from social situations. And I think that that also is a major contributing factor into increased depression and suicidality as well and they all go hand in hand. MEGAN NEFF: Yeah, and we know that from like suicide studies that if someone has a co-occurring substance abuse problem, they're unfortunately way more likely to complete or attempt suicide because when you have the ideation happening, and then, you take something that kind of impairs inhibition and put it in your system, that person is going to be at a much higher risk of attempting or completing. And we know autistic suicidality is incredibly high. And again, not talked about nearly enough in mental health field. PATRICK CASALE: Makes me want to do an episode on that, too. MEGAN NEFF: Yeah. PATRICK CASALE: We know that's a triggering subject and want to be sensitive around that. But it does need to be talked about. Yeah, so substance use immediately comes to mind for me. That's something that like, just feels very much like an extension. You already mentioned burnout, you mentioned depression, the isolation factor. I think your anxiety ramps up significantly. I think that you can start to see obsessive tendencies start to increase pretty drastically too when all of this starts to ramp up. So, your mental health is just going to start to deteriorate because you're working so hard, there's so much output, and there's so much input at the same time so it's just… And then, that's a good reason why we're going to see increased illness, right? Like, we're going to see increased chronic illness when this starts to happen too. You and I have talked about this before, and I've been sick all my life, I think about it constantly. Like, it's starting to become really apparent to me. Who the hell gets mono in third grade? And then like, is sick for a month? I didn't kiss anyone. Like, what is happening? But, yeah, so I start thinking about illness, I start thinking about just unhealthy relationship dynamics, unhealthy partnerships that start to get created. MEGAN NEFF: Absolutely. Okay, so this is kind of a side note, like I think we should add a disclaimer to episodes or to like all of our episodes, like is there a way to say like, all of our episodes are going to have potentially triggering content, this being no exception, intimate partner violence is much higher among autistic people. Also, the studies are a little bit different for ADHD, but also, for ADHDers. Some ADHDers can be perpetrators of intimate partner violence so that's why the studies are a little bit more nuanced for ADHD, but also, more likely to be victims. And so, yeah, absolutely, I think, I mean, if we think about masking as a trauma response that is a form of the fawn response. That makes a person incredibly vulnerable to victimization. There's a really painful study that showed nine out of 10 autistic women have been victim of sexual victimization. I'm not surprised by that at all. And I'm sure it's also high among autistic trans people. And partly masking teaches us to override our instincts, to override our boundaries, to override our ways of self-soothing, and it makes us so vulnerable in those situations. PATRICK CASALE: Yep, yep. I was going to talk about just being really susceptible, to being vulnerable, to being taken advantage of in a variety of reasons, in ways. And when you don't have that sense of self, and when you almost feel like you can't trust your natural instincts, or your natural instincts and reactions can't show up in a way that is safe to do, you're almost starting to second guess everything in a lot of ways too, how you move through the world. MEGAN NEFF: Absolutely. And so, then, if someone comes into your life who's like this, and gives you like a kind of way of thinking to orbit, which is what abusive people often do is they want you to orbit kind of their subjectivity or their world, then that's going to be really, in some ways, enticing of like, well, I can't trust my world but here's someone who's telling me I can trust their perspective on the world. So, I'm going to buy into theirs. PATRICK CASALE: Yeah, and I think, you know, we've talked a little bit about this here and there, and I know we're going to eventually do an episode. But we could go down that religious pathway with that, too, you can go down a lot of… there's just a lot of possibility to be taken advantage of when you feel like I cannot rely on my own thinking or reaction, or I have to suppress how I'm thinking or reacting to something. MEGAN NEFF: Yeah, absolutely, absolutely. PATRICK CASALE: And that goes into assimilation, right? It's like assimilation, how do I stay safe? How do I stay a part of? How do I belong? And… MEGAN NEFF: So, this is what is just kind of wild, right? So, the costs of masking are significant, right? Like, I feel a heaviness just having us listen to them. And for some people, it is safer to mask than unmask. Like, how much averseness, how much, like, the words are not coming to me, but how much systemic imbalance of power must a person be experiencing that it is better to mask than unmask? PATRICK CASALE: Yeah, that's heavy stuff. MEGAN NEFF: I see it on your face. PATRICK CASALE: It's just, you know, I think when we start talking about these subjects, you start experiencing the enormity and the heaviness that we both can understand. Like, you and I have gone through our own experiences and we know the heaviness and I know that you and I can both almost mind meld an experience. What am I trying to say? I know how we kind of have an understanding of our own worldview and our own inner experiences because we talk about them a lot. We're friends, we talk, we share this stuff, then you start to take on the understanding that it's so much heavier than that when you start to think about all of the people who are experiencing this stuff, all the people who don't necessarily know how to define this or identify what's happening beneath the surface, or someone who just, like you mentioned, cannot ever unmask. It's just heavy, it's a heavy topic. MEGAN NEFF: Yeah, yeah, I saw it come over your face. Hey, I feel it too right now as we're talking. PATRICK CASALE: I think autistic burnout, and autistic masking, and unmasking are just really important topics that we could have continuations of as we start to see the neurodivergent movement become more of a focal point in society because these things have to be talked about in order for things to change, in order for things to shift. But it's also just so freaking heavy to do that. MEGAN NEFF: I think because they're heavy that's why I feel, well, frankly, angry when they're not talked about with nuance because these things can't be boiled down to one sentence acclamations, or to one infographic, or and I realized that's what I do for a living. I distill complex informations to like bite-sized pieces. But there's so many real limits when we try to take such a complex, and nuanced, and multifaceted topics such as this and boil it down into a sound bite. PATRICK CASALE: Yeah, and that's why I think that when you and I approached one another about starting a podcast, that was the real excitement factor for me because you're never going to be able to get this information out there in one social media reel, right? Like, this could be endlessly discussed for hours and hours and hours and hours. MEGAN NEFF: Have we done the benefits or the privileges of masking? I know we kind of talked about it, where we talked about like, I feel like we've talked about more as the negative, in regards to, like, what groups sometimes don't have the privilege of unmasking. But I'm not sure we've covered, like, what are the benefits of masking? PATRICK CASALE: Yeah, let's do it. MEGAN NEFF: So, the things that I put on my infographic that, you know, got a lot of heat this week, things like, you know, job, job security, and again, this is a minute I've heard from a lot of autistic people talk about is access to jobs. And this is why I talk about it as a privilege, is masking has given me access to systems of power and privilege. So, access to jobs, access to education, being less targeted for bullying. Now, as we talked about, a person might be more targeted for victimization, actually, not more because like all autistic people are targeted for victimization. And if you're not masked, you could be targeted for other reasons. But less bullying, for your social differences, less kind of outward stigma, there might be more internalized ableism, but less of that outward discrimination that you're experiencing, less likely for your actions, your neurodivergent traits to be misinterpreted by the public or law enforcement, which again, this is where that intersectionality piece becomes so important. That doesn't guarantee safety for black autistic people or people of color who are autistic. But it could increase safety if… I'm not saying it well, my words. So, those are some of the benefits of masking. PATRICK CASALE: I think that was clear. Yeah, what I'm hearing is safety, potential security, potential access- MEGAN NEFF: Economic security. PATRICK CASALE: Yeah. Yeah, absolutely. And it's just a shame because the benefits of masking directly correlate to the detriments of masking in a lot of ways, too. MEGAN NEFF: Totally, which is why… like it's not as simple. And like early in my kind of content creation, I talked a lot about like unmasking. But then I realized like, it's not as simple as like just unmask because then you have these new complexities to deal with, you have people looking at you, you have to address negative comments. Those are also sensory experiences. So, the answer isn't unmask, I think, the goal often is to be able to strategically unmask. And of course, the goal is to build a more neuro-inclusive society. But that takes time and we're not there yet. PATRICK CASALE: Yeah. One thing I think we could talk about, also, is just some strategies, maybe some techniques to safely unmask when you're able to do so, even if it's at home. You talk about a lot of these things on your Neurodivergent Insights Instagram account a lot of the time MEGAN NEFF: I haven't yet but that is exactly what I'm working on this month. And that's where kind of the concept of self-unmasking versus public unmasking feels helpful for me. I think self-unmasking, like any sort of inventory that helps you figure out, again, your delights, your pleasures, that takes your desire seriously, other exercises I've seen are things like, find a memory of the last time you were happy, or the last time you felt connected to yourself. So, a lot of it's also about going back into memories. And for a lot of us that involves going back to childhood because that's when we can access a more unmasked version of us, thinking through, you know, what do we love? What do we love to talk about? What are our interests? What are our collections? If we have them. And, again, masking often we feel the need to hide our interests. So, actually, intentionally spending time with our interests, and celebrating them not as things of shame, but things that bring us delight and pleasure and meaning. PATRICK CASALE: Yeah, I love that. That's why, like, I still stand by my statement about parts work and IFS being really helpful for autistic people in therapy [CROSSTALK 00:45:43]- MEGAN NEFF: Because that helps you do some of that unmasking. PATRICK CASALE: Yeah because you're able to at… if you can really get into that childhood part, you can have some really good access to some of those memories that can feel really fragmented at times, too. I, myself feel very disconnected from childhood and that childhood part of me, but if I can get back into that place where, like you just mentioned, I can remember having that Garfield collection, I can remember having all of these things that brought me joy, then it's like, okay, I can access that part of myself and I know that that memory is a positive one. MEGAN NEFF: If someone hasn't already created this, like, even just like a 60-minute masterclass on using IFS to help a person unmask that would be a great, like, clinical training, or just a training for neurodivergent people because I hadn't connected that before, but you're right, I can see how that would be such a powerful tool. PATRICK CASALE: Yeah, it's so powerful, especially, like, I don't want to diverge too much right now. But it's powerful, it's useful, especially, if you have a really hard time accessing present self or even like, past self that wasn't, you know, within the last couple of years. I have a very hard time with that. Like, I have a hard time with accessing and to be able to break it down in parts. Let's just say, like, the entire teen me doesn't remember this but I know there's a part of me there that like can access this that's really helpful. MEGAN NEFF: Yeah, yeah. And then, figuring out, like, what are the things that kind of pullback that part? Like, pull it back like a thread you're pulling out. So, it might be like a sensory experience or like, you've talked about Garfield. Like, I could imagine just looking at Garfields that you have, probably, helps you come back into that part. PATRICK CASALE: Oh, totally. MEGAN NEFF: Yeah. PATRICK CASALE: Absolutely. MEGAN NEFF: Makes me want to go find some Blazer basketball cards, see what part I could access. PATRICK CASALE: I love that that was such a special interest for you. Also, by the way, at some point in time, during an episode, we will definitely shout out all the responses we got for special interests on our Instagram because there were some really cool ones on there. I thought it was really unique to just hear everyone's special interest, the things that you collected as kids, things that you really remember very viscerally, very real that that brought you joy and some fulfillment. I thought that was really kind of a beautiful little engagement on there. MEGAN NEFF: I love that. Patrick, that's something I've been thinking about too, is like, as we've been talking about this heaviness, I really, like the feedback we've gotten, the exchanges. I know you've had exchanges, I've had with listeners, not that either of us need more on our to-do list, but I'd love to find a way of building community around what we're doing and our listeners. Again, back to that idea of people are craving and needing connections and I think, especially, autistic spaces that hold space for nuance and complexity, I think. I've heard a lot of autistic people kind of go into social media and then burn out because it feels like too activated which it makes sense, like it's going to be an activated space. But okay, now I'm diverging and tangenting, did I just throw that into a verb? PATRICK CASALE: Sounds like a new Megan Anna-ism right there. Tangenting, no, I agree. I think that we could put our heads together about creating some space that feels really supportive and affirmative, and has room for nuance, and just connection, and conversation like this. So, I'm happy to try to figure out what that could look like. MEGAN NEFF: 2024 goals. PATRICK CASALE: Right, everything in my life right now is 2024. That is not a today me problem, that is a next year or 2025 [INDISCERNIBLE 00:49:38]. MEGAN NEFF: I do that all the time. I think my future self is going to have all this spaciousness. I think it was my husband who, I don't know where he heard this, but he was like, if you want to commit to it in the next three weeks, you should say no to it. Like, that's a mental exercise you should do. Because I do that all the time where I say yes to things that are like four months out because I'm like, "Oh, future Megan Anna will have all the time in the world, I hope." PATRICK CASALE: Yep, that's what we've talked about, that our ADHD selves are like, "This is a good idea." And then, it gets to that point on your calendar, and you're like, "What was I thinking?" MEGAN NEFF: That was a terrible idea. PATRICK CASALE: Also, I just want to give myself props for not cursing a single time today. I'm trying to be really mindful of that. So, yeah. Anyway, I think it's time for our awkward goodbye. I hope this conversation was helpful. It was heavy, but I do think it's important. And Megan, I just want to say thank you for sharing that space and just sharing that heaviness too. And to everyone listening to the Divergent Conversations Podcast, new episodes are out every single Friday on all major podcast platforms and YouTube. You can like, download, subscribe, and share.
Hello and welcome to the Relatable Voice Podcast! Today, we are heading to Idaho to talk to Korynn Newville. Korynn Newville is an architectural designer, artist, environmental activist, and author. When she is not working or studying, Korynn enjoys camping, biking, and spending time outdoors with her husband and two beloved dogs. Her latest book, "Indiscernible Elements: Calcium," has recently been released and is available now. Find out more at: newvillekorynn.com Learn more about your ad choices. Visit megaphone.fm/adchoices
In this episode, we explore demand avoidance, a common experience among neurodivergent people. We delve into the factors contributing to demand avoidance, including executive functioning challenges, sensory issues, and a desire for autonomy. Additionally, we take a closer look at Pathological Demand Avoidance (PDA), also known as Pervasive Drive for Autonomy, a complex and often misunderstood subtype of autism. Join us as we navigate this important topic, gaining a deeper understanding of demand avoidance and its impact on neurodivergent lives. Dr. Megan Anna Neff, an AuDHDer psychologist and mother of a child with PDA, describes it as "anything that comes at the person that threatens autonomy invokes an extreme fight-flight response," and says that it can be seen through a lens of "nervous system through stress response," making it different than something like oppositional defiant disorder or conduct disorder. Individuals with PDA sometimes develop sophisticated and subtle masking strategies to appear compliant and cooperative on the outside, even though they may struggle internally, which can involve imitating expected social behaviors and responses while suppressing their genuine feelings of overwhelm and resistance. In this episode, Patrick Casale and Dr. Neff speak with Tara Holmquist, PsyD, about PDA and her personal experience as an AuDHDer with PDA. If you're interested in learning more about PDA, trauma, and demand avoidance, this episode is for you. Top 3 reasons to listen to the entire episode: Understand how PDA shows up in the lives of those who have it and how it both internally and externally impacts their lives. See how demand avoidance is often a coping mechanism rooted in trauma. Learn coping strategies and skills for managing demands. PDA can be a painful and overwhelming internal struggle that also manifests in ways that aren't always received well on the external side of things when the pressure of demands just becomes too much. This episode aims to shed some light on the complex world of demand avoidance and PDA to gain a deeper understanding. More about Tara Holmquist: Tara is a clinical psychologist licensed in CA and WI. She has been in private practice for about 5 years working with adults with relational/attachment trauma, as well as addiction/substance use. Her practice is exclusively telehealth, and her practice values include a heavy examination and challenge of implicit biases, internalized capitalism, and patriarchal leanings. Her practice is trauma and social justice informed. And she's a pretty cool regular human too. Tara's Facebook: facebook.com/tmhpsych Tara's Instagram: instagram.com/tmhpsychotherapy Additional Resources: Dr. Neff's blog post on "Autism PDA Explained: The Core Characteristics of Pathological Demand Avoidance" PDA MasterClass: For an in-depth clinical definition of PDA, check out Neurodivergent Insights MasterClass featuring Dr. Donna Henderson. Transcript PATRICK CASALE: Hey, everyone, you are listening to the Divergent Conversations Podcast. We are two neurodivergent mental health professionals in a neurotypical world. I'm Patrick Casale. MEGAN NEFF: And I'm Dr. Neff. PATRICK CASALE: And during these episodes, we do talk about sensitive subjects, mental health, and there are some conversations that can certainly feel a bit overwhelming. So, we do just want to use that disclosure and disclaimer before jumping in. And thanks for listening. PATRICK CASALE: Hey everyone, you're listening to another episode of the Divergent Conversations Podcast. Today we've got a wonderful guest on, a good friend, and colleague, Dr. Tara Holmquist. She is a PsyD in California, lives in Wisconsin. And today we are going to talk about PDA. So, Tara, thank you so much for coming on and just share a little bit about who you are. TARA HOLMQUIST: Yeah, and thank you again for having me. Megan, very, very nice to meet you. I'm excited about today. I'm excited about this experience. So, as far as my neurodivergence, I'm definitely ADHD. I am about 90% sure that I'm autistic as well, so I'm sort of late identified, still exploring, but pretty sure. And as of late, I've really been, it's like exploring, and excited, and learning about the PDA profile. So, I thought we could have some conversations about that today, our experiences, and just, you know, the difference between just having demand avoidance and actually like a PDA profile, what that looks like, you know, as an adult really isn't a fab for me. PATRICK CASALE: Cool. Well, I'm going to turn it over to Megan, who this is her wheelhouse, for sure, to kind of give the listeners, if you don't know what PDA means, or what that looks like a brief overview, and then, we'll kind of jump into why we're doing this podcast today, too. MEGAN NEFF: Yes, so PDA, it has historically stood for pathological demand avoidance, which, again, I mean, so many of these things are defined by what the outside observer might see, and so, that's a classic definition from the outside, a person with PDA is going to have a lot of demand avoidance. I prefer the term, oh, my brain is foggy today, I would know who coined it [CROSSTALK 00:02:03]. But, well, yeah, pervasive drive for autonomy, I was trying to think of, I think, it's an Australian person, perhaps, who coined the term, a PDA. And I really like that term, the pervasive drive for autonomy because that captures the internal experience. It's anything that comes out the person that threatens autonomy, invokes an extreme fight/flight response. So, we really have to see this through the lens of nervous system, through stress response, which is what makes it so different than something like oppositional defiant disorder, or conduct disorder, which is often what, especially, these kids get diagnosed with, typically, is the main like oppositional defiant disorder, but it's their bodies are going into fight/flight mode, sometimes freeze mode. So, we also can talk about internalized PDA versus externalized PDA. And it's, I think, conceptualizing it through anxiety. And then, fight/flight is a really helpful way of understanding these children and these adults. Increasingly, we're seeing more and more adults talk about PDA, which I'm also super interested in. I have a ton of demand avoidance. I'm a parent to a PDAer, so there's things that I don't relate to about the full PDA profile. But I think most autistic people have a ton of demand avoidance. So, I'm really also interested in teasing out that conversation, kind of like you were saying, Tara, but like, what's demand avoidance? What's PDA? How do we tell the difference? TARA HOLMQUIST: Mm-hmm (affirmative). Oh, me too- PATRICK CASALE: Tara, you… TARA HOLMQUIST: Oh, go ahead, Patrick. PATRICK CASALE: We're going to find ourselves in this today where [CROSSTALK 00:03:41]- TARA HOLMQUIST: This is going to happen. MEGAN NEFF: Well, even where like robotic, like, you talk, you talk, you talk or we'll talk over each other. TARA HOLMQUIST: Yeah, yeah, that's what's going to happen today. Like, I'm just going to dominate everything. PATRICK CASALE: Good I'm glad because I wanted to use this episode for like exposure therapy in a way for Tara. Tara is a good friend and DMed me about like, what you were experiencing that's why I wanted to have you on. And do you mind sharing, like, I don't know if you remember the specific example that you gave me, but what's happening for you when you were like, "Oh, shit, this is something I really associate with, this is something that's starting to make a lot of sense." And you're starting to conceptualize it through that lens. TARA HOLMQUIST: Yeah, I don't remember the specific thing. But now that I'm thinking about it kind of all the time it's like, oh, it could be an example. But I guess for me, you know, I had a client that was talking to me about, you know, like, shame, and guilt, and stuff like that. And she was saying, "This is why I do everything so fast all the time because, like, I just don't feel worthy of taking up space or whatever." And I was like thinking about that for a while, and then, started to apply that to me because that's historically and everybody that knows me in person will laugh because I'm constantly like running around doing everything. I'm running wherever I go, I have to do everything as fast as possible. All of the things that are on my to-do list is going to get done in like one microsecond because I just have to. So, I started thinking about my experience, and I'm like, it's not a worst thing for me, but it's an extreme discomfort for me. Anytime that I am expected to do something, even if it's just feed myself, or step away from whatever task I'm doing right now, anytime that I have that it's like, extreme discomfort in my body around having to do something, whatever it is, and so, the way that I've coped with that, or the way that I've kind of understood it is just like, just get it done as fast as possible so that I could just sit down on the couch and stare at the wall type thing, you know? That I'm just like, just do it, and then, it's like a loop. But this is my constant experience, where I'm just like having to do something, I'm extremely anxious about it, go do the thing as fast as possible, and then, go sit down, and wait for the next thing to happen that I have to do. And then, go, repeat, repeat, repeat, repeat forever. MEGAN NEFF: So, Tara, I'm smiling because I'm having a memory from my summer before I went into my doctoral program. I was kind of loosely connected to the program, so I was able to find all the syllabi from the program. And what I did, I ordered all of my textbooks, and I ferociously read cover to cover all of my textbooks, we're talking about thousands of pages, for my first semester of grad school during the summer before I even started the program. And it was kind of what you're describing as the idea of having a task on my plate was so anxiety-inducing, that it was like, "I'm going to do this as fast as possible, and then, I can rest." And it totally stole my summer, right? Because it's like, I cannot rest until this is done. And that becomes a loop for me of, I work through my tasks really quickly because it's like, there's this fantasy, once this is done then I can rest. But of course, life doesn't work like that because, you know, bodies need maintenance and work keeps coming. But that's absolutely the fantasy. Do you relate to that? I felt like I heard some of that when you were talking. TARA HOLMQUIST: Yeah, 100%. I mean, constantly. And I don't even know at this point what rest feels like, right? Because I'm not even resting when the task is done. It's just, okay, what's going to be the next thing, you know? And depending on who it's going to come from because internally, I can manage my own tasks that I set for myself, feeding myself, or doing work, going to see clients, whatever. But if my partner calls me or one of the kids calls and is like, "Hey, can you start the oven for me so I can throw in a pizza." I'm like, you know, just totally dysregulated and I'm like, I hate my life, and now I can't move. So, yes, yes, yes, yes, very much resonate with that and question myself a lot because then when I go to explore kind of, like, demand avoidance in general, right? When I go to explore this, you know, watching the mastermind or whatever that you did with Dr. Henderson, like, I'm like, oh, that's not my experience of like outward, you know. It looks like your opposition or looks like you're just applying all of these things. But on the outside, I'm like, I'm getting everything done all the time. I'm constantly going inside and I'm struggling, though. Inside it's torture, yeah. MEGAN NEFF: So, can I put you on the spot a little bit? TARA HOLMQUIST: Yeah. MEGAN NEFF: Clinically. So, I'm curious how or if you can tease apart like what is difficulty with task switching versus demand. I keep hearing you say it's like the demand will do the [INDISCERNIBLE 00:08:51]. We know task switching is hard for ADHD and autistic brains, right? That switching from I'm in flow, you're now asking me to like, get out of hyper-focus, or out of hyper fixation, and shift tasks. Can you tell the difference between like, what is task switching struggle and what is like, this is a demand coming in that I wasn't expecting that is, you know, threatening my autonomy. TARA HOLMQUIST: That's a good question. I think, in the moment, and if I'm in it, I can tell the difference. It feels different for me. I will say this, anything that is not something that I'm currently obsessed with is a task for me. And, you know what I mean? MEGAN NEFF: Yes, yes. I already [CROSSTALK 00:09:33]. TARA HOLMQUIST: Yeah, so if I'm pulled away from Ted Lasso, or if I'm pulled away from Schitts Creek, or if I'm pulled away from scrolling through TikTok because I'm just, you know, resting or whatever, anything is considered a task for me, and when it becomes something that I now have to do, that's when the anxiety starts coming in of like, I don't want to. I don't want to at all, and then it takes a lot of energy for me to get up and do it. So, it kind of merges. I can tell the difference. I don't really know how to articulate it, though, if that makes sense. MEGAN NEFF: Yeah, yeah, no, and that's what I was curious about because like, you have the experience, and then you're a clinician, I was curious if you're able to tell that subtle difference. I think I could also tell the subtle difference, but I don't know that I'd be able to articulate it either. TARA HOLMQUIST: Yeah, yeah. It's just something. It's just a feeling in my body of like, stress. Yeah, I don't know. It's just like a stressful feeling. It's a frustration when I have to switch tasks and then pulled away from something I love to do, you know? It's a frustration and it's like, okay, get it done. But as soon as like, I have perceived it as an expectation, then it's like, oh, now I'm going to throw a tantrum along doing them. I'm still going to do it, still get it done, but I'm going to be huffing and puffing, and like, agitated about it while it's happening. And then, I don't know if I can even get back into Schitts Creek, or Ted Lasso, or whatever the hell else I'm doing because now I'm waiting for the next thing. MEGAN NEFF: I think that captures it well. I think I experience more frustration if it's a demand coming from someone else. If it's a task switch, I feel more pressure. Like, I've got to finish this before I can like mentally kind of evacuate the space and go to another one. So, like panic, frustration, and I would say, in my case, irrational frustration if a person requested a demand. TARA HOLMQUIST: Yeah. PATRICK CASALE: Tara, you mentioned to me when we were first talking about this, like a visceral reaction because I think it was a, I'm remembering the example now, like, I think it was like furniture shopping or something like that or some type of shopping with your partner, and then, all of a sudden that got canceled. And then, it was so hard to switch into, like, a mindset of let's go get a drink, or let's go do something else because you had already built up the mental energy to say, "I'm going to do this thing that I don't want to do, and now because the task is switching, I have such a avoidance to what's coming up, and it's going to come up viscerally, and it's going to come up physically, and I'm going to get really irritated and really frustrated about this." TARA HOLMQUIST: Yeah, yeah. Thanks for reminding me because now I totally remember it. And that, like, I attribute more to, like, I have the intense need for sameness. Like, my routine is set. I already know what I'm doing, and if you're going to change that on me, don't do it five minutes before, you know? So, the situation was we were supposed to go to soccer game, my partner is the coach at his son's soccer team. We were supposed to have a soccer game, game's at one o'clock, whatever. We're going up, we were waiting for it, waiting for it, waiting for it. And then, literally, like a half an hour before we were supposed to be there for the game, the other team canceled for weather. Okay, nothing we can do about it, fine, it's fine, it's fine. So, we kind of sat there for a minute, and then, all of a sudden he was like, "Okay, well, we have time now, let's go grab the furniture that we wanted to buy." And immediately I like lost my shit. I was like, "I'm not prepared for this. Like, even though we've been talking about it for weeks, we just needed to find a time." I was like, "I'm not prepared for this." I had like, a totally, like, visceral response of like, but just anxiety. And I attributed that to like, just pulling me out of my routine, my structure of what I had going on, you know? And I mean, I had that paralysis when that happens anyways. Like, I wasn't doing shit until up into the game. Like, nope, I have to sit here because the game is at one, and I can't do anything until this game is over. I've watched and cheered as much as I can. And then, we can go do furniture. But now that you've changed this on me, it was really, really difficult to even regulate that after that, you know, and we did it. We bought the thing, but I didn't have a good time. I don't know, it was a hard transition for me as most things like that are, yeah. PATRICK CASALE: And all three of us have the unique perspective of being mental health workers and trained in regulation, and techniques, and strategies. So, it's interesting, you know when we're experiencing it ourselves when this stuff is coming up, and then we're like, shutting down or melting down, so to speak. And then, we have to reregulate and figure out a way to be able to push through to do the things that we don't expect to do or don't want to do. And like Megan mentioned, the transition switches are so challenging, especially, unexpectedly. And I imagine, you know, if we're going to frame this for like kiddos, and teens, and young adults who are not mental health workers, or don't have the language, or don't have the skill set, that is where we would see the misdiagnosis of ODD or the things that come up, and where all of a sudden it's like we need behavioral modification here because this person can't, you know, switch from these tasks or when this is placed upon them, they melt down or shut down. TARA HOLMQUIST: Yeah, 100% and, you know, one of the interesting things that came up, and maybe this is a similar conversation that you had with our mutual friend, Patrick, around the intersection of like trauma and PDA, or even just like, you know, there was three things that we're talking about, like masking, and trauma, your trauma triggers, and then, like PDA stuff. So, my experience, and this is where I get confused, and, you know, wonder about what this looks like as an adult versus what we see with kids is like demand avoidance or even the PDA profile is so focused on like outward behaviors, right? Or outward experiences of, you know, the kid that's going to sit in the therapist chair and go, "I'm a therapist today, and I'm the boss, and, you're not…" You know, all of those things. Like, I love that. But for me, and like, my trauma history is I was raised very, very, very like hyper independent. So, like, I do everything for myself all the time. And I do everything for everyone else. Like, I'm super, super hyper-independent. And there's a trigger around, like, if I don't do everything I'll get in trouble in some way. If I cause anybody to, you know, question my behavior or question something, then immediately I did something wrong, and I'm in trouble, right? So, I learned at a very young age to just take care of it, figure it out, take care of it, rely on myself, do all these things. So, you're never going to see me outwardly defying anything, you know? As soon as somebody gives me a suggestion, or an expectation, or a demand, or tells me to do anything, I'm doing it right away, and you're never going to see me from the outside and go, "You know, she's having trouble." You'll never know. But internally, I'm dying inside, you know? Internally, I'm like, I don't have the energy, I don't have the strength, I don't want to do any of this stuff. Like, now, it's expected of me because of how I've coped with, you know, emotional neglect, how I cope with not getting all of my needs met, you know? When I was a child, you know, this hyper-independence is not actually me being like, "I don't need help." Self-reliance and all that. It's like, actually, I need a lot of help, and stop telling me to do stuff. PATRICK CASALE: Yeah, I can definitely relate to that. So, I think, like, it's a struggle, especially, when you are still managing to get everything done because if people don't see the other side of it, of how much energy it's taking, and how much sensory overwhelm it's causing. And, yeah, I'm curious about your thoughts on that, Megan. TARA HOLMQUIST: Yeah. MEGAN NEFF: I had thoughts then they flew away. I think I was thinking how adaptive it is if your trauma environment was one of, kind of, overreliance. And if so much of your energy was going to your own survival, how any demand on top of that would just be like, are you kidding me? And what a kind of brilliantly adaptive response to your environment. TARA HOLMQUIST: Fair, fine, will be nice to myself. It was adaptive and also exhausting. MEGAN NEFF: Well, that's the thing, right? Like, those things that help us survive, like, non-ideal environments stop being adaptive when we're adults, right? And that's why we exist as therapists. TARA HOLMQUIST: That's right, that's right. PATRICK CASALE: That's true, that's true. Megan, for you, and you mentioned like, you know, sharing some of these tendencies and traits with the PDA profile and having a kiddo who does as well who's a PDA or what does that look like for you on your end? MEGAN NEFF: Yeah, I mean, tons of... I think, and maybe I get a little nitpicky here, what I'm noticing, at least in social media, I feel like people are conflating demand avoidance with PDA. And so, that's where I like to be a little bit specific with my language of like, having parented a PDAer and like, experienced a very visceral experience around parenting them. Like, I can tell, okay, when I'm experiencing demand avoidance this is different. And so, that's where, yeah, I definitely relate to a lot of the demand avoidance. And the internalization, I'm very similar to Tara, and that it's on the outside. Like, someone says, "Jump." I'm like, "How high?" Although, that's actually not always true. Like, I've been recently working through some shame on this of, I was collaborating with a colleague, we were going to do some public speaking, and I realized that public speaking is where my demand avoidance just goes full throttle. Like, I will fantasize about getting sick, I will try to figure out how in the world to get out of it. Like, I'll often commit to public speaking because I'll be excited for the first 24 hours when someone reaches out. And then, I will have so much demand avoidance that it makes me actually pretty flaky. So, I've decided to stop saying yes to public speaking for the next year just to see like what set like because I will, for months and months and months have so much anguish around it, and I'll procrastinate which isn't common for me. So, it is one place where professionally I really notice my demand avoidance causing some tension. But then otherwise, yeah, a lot of the internal experiences of I do a lot of tricks to get myself to do things. It's interesting just hearing other people talk about their internalized PDA. It's one of those moments where it's like, "I thought everyone did this." Like I thought everyone tricked themselves into kind of multitasking, or doing these things, or making it a game to get themselves to actually do the thing. But yeah, I spend a lot of mental energy if it's something outside of my interest. I think it's one of the reasons I'm shifting away from clinical work, and right now two of my five days in a week I don't have any demands on me unless I'm placing them. I have a lot of work to do, I have a lot of writing, I have a lot of content to create. But those days feel so different to me because I'm waking up and it's demand free. It's whatever I want to do. And so, I am moving towards structuring my life more and more that way because it just works better for me. TARA HOLMQUIST: Yeah, that sounds like a dream. MEGAN NEFF: I know. I'm sorry. Are you doing five days of clinical work? TARA HOLMQUIST: It's like four and a half. My Monday's are- MEGAN NEFF: That's a lot. TARA HOLMQUIST: Well, they're such a good job of like, my Mondays are dedicated to me. But now I've started to fill up my Mondays with doing ADHD and autism evaluations, and like, absolutely love doing it but absolutely hate writing reports. MEGAN NEFF: Obviously, that is a big demand. TARA HOLMQUIST: It is. MEGAN NEFF: I have a mixed relationship to assessments too. I love it and we need so many more assessors and the report, that's a big demand. TARA HOLMQUIST: It is. And that's why I'm still sort of, you know, Patrick's always like, "Let's go. Whenever you're ready to go into it, like we're going to support you, we'll go full force." And I'm like, "I don't know because I love doing it. I love meeting with people. I love the assessment part." And then, yeah, it's just that writing part that I'm just like, "Well, can I just tell you? Like, can I just tell you instead of writing all this stuff down?" Like, yeah, just, you know. MEGAN NEFF: Mm-hmm (affirmative), I mean, I know this isn't a consult call, but you probably could. Like, for people who aren't looking for accommodations, you probably could find a way to make a much briefer report, and then, do more of it verbally, depending on what they're needing. TARA HOLMQUIST: Yeah, I had someone actually last week that we had that conversation, and they were like, "You know, I don't necessarily want it written down anywhere. But I do want to explore this and like, what are our options? So, can we talk about that?" MEGAN NEFF: Yeah, I'm seeing more and more people wanting that. They're wanting confirmation, but they're not wanting that medically anywhere, which kind of makes sense to me. TARA HOLMQUIST: Yeah. MEGAN NEFF: That's your that's your demographic, that's your like, ideal client, and people who want they're like, "Yes, I anoint you as a psychologist with this diagnosis, but I'm not going to medically put it anywhere." TARA HOLMQUIST: Exactly, exactly. I mean, it's just good [CROSSTALK 00:23:47]- PATRICK CASALE: …if you're able to just anoint people with these things and then you validate, and support, we don't have to, you know? I think that speaks to this profile in a way, right? Like, the demand for I have to write this report, but I absolutely don't fucking want to for a myriad of reasons. And then, I notice that myself for so many things, and what I hear you saying, Megan, is like really creating a schedule in your life where it's much more flexible in terms of demands and demands that are put on you, and if they're going to be there they're demands that you put on yourself. And I know that not everyone has the privilege to do that with their schedule or create around it. But I do think that's a great strategy for people who are listening who need some relief, first up from some of this stuff is to figure out ways to lessen the load of demands that are coming on you from other people and less that you're putting on yourself. TARA HOLMQUIST: Yeah. MEGAN NEFF: Yeah. TARA HOLMQUIST: Absolutely. PATRICK CASALE: Tips, strategies, techniques, anything that we can offer the audience about, you know, when they're struggling or when they're experiencing anything like this that we're talking about. MEGAN NEFF: I mean, similar to what we're just talking about, I think, if, again, if someone has, like if this is accessible to a person, having one day a week that is demand free. And it could be a weekend day, right? But just the relief of, like my daughter and I will both talk about this, like the relief when we wake up and it's like, it is an open day, there are no demands. Having at least one day a week where… I think that's really soothing and to be able to depend on it too. TARA HOLMQUIST: Yeah. Even the idea of like, oh, like it's a free weekend, right? And like even the thought of, "Oh, maybe we'll go to dinner later on Saturday night." Or something like that, if that's planned on Friday night, that's not a free day for me on Saturday, you know? It's not an open day for me because I'll like, all right, I'm going to do nothing literally until whatever time dinner is going to be, you know? MEGAN NEFF: So, are you like this? I'm very much like this, like spontaneous socializing. I cannot make plans with people. Otherwise, there's something on my day. So, if I'm trying to connect with someone on the phone or see someone that doesn't happen much anymore, but it's got to be like, "Hey, are you free right now?" TARA HOLMQUIST: Yeah, absolutely, you know? Even scheduling this, right? It was like, "Hey, here's your options for this." And I'm like, I just want to say no to all. Like, first of all, I should say, like, reactionary for anything, I say no, first of all, you know? "Tara, can you turn on the oven for me?" "No." "Can you do…" So, everything is no even though I'm going to get up and do it. But absolutely, like scheduling even this time to talk it was like, okay, I'm going to do it in the middle of my clients. I mean, it was limited time anyway, but like, I'm going to do it in the middle of my client so that I can't get out of it, I can't say, you know, yes, I'll do it, and then find some excuse on a Saturday to not do it, absolutely. Like, it has to be now or never, and preferably never. But let's do this now. MEGAN NEFF: That's another good strategy is packing demands. Like, same thing with Patrick, when we started this podcast, I was like, "Well, Tuesday is my busy clinical day so let's do it Tuesday to record." Because it's like, it's a demand day, and that means that my Wednesday can tend to be low demand, but by packing my demands, like that's one strategy, and it sounds like you kind of did that too. TARA HOLMQUIST: Yeah, without even knowing. PATRICK CASALE: I have to do that with scheduling stuff. Like, scheduling my own stuff I'm fine with it, but I notice every time I scheduled someone else's podcast, or someone else's speaking engagement, or someone else's anything I'm like, rescheduling, rescheduling, rescheduling, pushing it back, pushing it back, pushing it back. And there was a part of my brain that's like, "Just fucking get it done." But I don't want to, so then, I can't. And I've rescheduled on one person in particular that I'm thinking about right now, Porter, like conversation about, like, come on my podcast, be a guest. And every time I pick a time, like, I don't want to do that that day. I don't want to do that at that time, like, so now it's in August, and I'm sure once we get to August it'll now become October, and it'll just never happen. And I'm sorry if you're listening, I- MEGAN NEFF: Do you all do that fantasy thing where it's like, "In August, I will want to do this. Like, this is going to be a big deal." So, I'll commit to things, so like the speaking thing I mentioned that I then got out of, but I also had things out off my plate since then. But it was like, "Oh, in September, like I'll be this whole new person who would love to do public speaking." And it never happens. But the fantasy always stays that, you know, four months from now I will just, you know, love that demand but… TARA HOLMQUIST: 100% or right now, like, I always take the week between Christmas and New Year's off, and here we are like almost in June and I'm like, "Oh dude, that week is going to be so good. I'm going to come back to the New Year just a whole new person." PATRICK CASALE: That's such a fucking lie too, like, it's just a fucking lie. I get kind of romanticized idea of that. And I don't know if you all relate, but I think you do because I saw you both like nodding in agreement when Tara was talking about something, but like rushing from demand to demand or task to task to get them over or to give yourself like breathing room, I'm always telling myself like once I get this done, or once I've created this thing, I can finally breathe and like have nothing to do. And that never happens. And that feels like this internalized torturish pressure of like, I just want to disappear from all of this. But when could that actually happen? MEGAN NEFF: Yeah, disappearing fantasies. I've had that since I was a child. Like, where, oh, this sounds so morbid. It sounds so morbid. I don't have this fantasy as much since realizing I'm autistic and adapting my life, but like, fantasizing that everyone I knew… This is- PATRICK CASALE: You can say it [INDISCERNIBLE 00:30:15]. MEGAN NEFF: Oh, my God, that everyone I knew died. And that I was like, starting over nowhere, with no expectations on me, no demands on me. And I think part of that was the mask of like, I could actually be myself if everyone who ever had known me didn't exist, or if like, I moved to another country, that's a much less morbid fantasy, just me, but then, I'd live with the guilt of like having left and moved to another country. But it was about a demand avoidance and about like authenticity of I can't actually be my authentic self until everyone I've ever like, touched in my life as a human doesn't have, like, a known history of me in their memory. PATRICK CASALE: You're really hoping for like the [INDISCERNIBLE 00:30:57] fingers snap, and then, half of those people are just gone. TARA HOLMQUIST: Gone. MEGAN NEFF: Yeah, obviously, not a real fantasy, but I- TARA HOLMQUIST: Maybe they could still exist, but just their memories are wiped. It's like a Men in Black thing. MEGAN NEFF: Yeah, yeah. PATRICK CASALE: Yes, yes. I can relate to that. I think that there is this fantasy of starting over or just not having anyone know anything. And you can just start naturally. Maybe that feels like a common fantasy for a lot of neurodivergent people who have struggled so significantly with social struggles, and just the day-to-day lived experience of what it's like to live inside a body with a nervous system that we have. I mean, what I'm hearing all of us say is that a lot of just getting through life is really fucking challenging. And we're constantly figuring out ways to do things so that we can get through another day, and that it's exhausting, and it's a different type of exhausting than like a neurotypical person saying, "Counting down the days to that beach trip, and that's going to rejuvenate me." It's like, we don't really have an escape. I think that's what we're saying. TARA HOLMQUIST: Yeah, yeah, I even like, rest and relax in private, if that makes sense. Like, I'll do, you know, all of the things that I'm supposed to do and expected of, and that's my role, and my family, and my life, and everyone involved, I'm a therapist then I'm whatever. And then, as soon as I have like a unexpected break in my day or something like that, like, I ran over into my bedroom, shut the door because my kid lives downstairs for one more day, and so, I'm like, "Oh, I don't want anyone to see me like resting." I'm hiding away because, immediately, as soon as I don't have something to do, somebody's going to ask me to do something, or there's like a shame in resting, and I think that's part of my trauma stuff is like, there's a shame in not doing something all the time, or making sure that someone's okay all the time. So, I'd rather hide away in my room with my snacks and my Tiktok or whatever. And like, pretend, you know? Like, I don't exist to anybody right now. Everyone thinks that I'm doing something else. So, it's kind of similar to what you're saying, Megan, which is just like, I can be exactly myself, unmasked, and just no demands on me whatsoever, and I could just literally stare at the wall, like people think I'm joking. I'm like, I just want to stare at the wall for like an hour. Like, I literally just want to stare at the wall. MEGAN NEFF: Yeah. Well, that's an interesting part of it, too, is I hear a lot of autistic people talk about like how comfortable it is to be home alone because it's not just that not having a demand, but knowing no demands are going to come at me. So, like when you go into your room and retreat, and it's like, okay, how do I create a bubble where someone doesn't just walk in the room and like, assault me with a demand. So, that's an interesting psychological component of it, too, is not just there not being demands, but like the kind of certainty no demands are going to come at me, which is really hard in this world with how kind of interconnected our lives have become with technology. Patrick and I have talked about this a lot, like the incoming pings and pawns like in all these little splintered demands that come at us. It's hard to not be assaulted by demands all day long. PATRICK CASALE: It really is. And I think you're so right about… That's the beauty of having the ability to work from home is you kind of do get to set your expectations, right? Of like, who has access. But Megan just touched on something I wanted to mention, for those of you listening, like really figuring out a routine to start your day because I know I don't do a good job of this where I immediately as soon as I wake up, check my phone because I put my phone in a different room at night because I have to get away from the demands. I also feel like this unbelievable pressure to always be responsive to things. So, I check it and immediately it's emails, messages, Facebook messages, Instagram messages, group practice messages, and my day can be ruined in a matter of seconds. And it really is important to try to figure out a routine and a strategy where you're not doing that immediately to start your day or end your day because there are techniques that we can put in place to have some distance, even if it's momentarily. Like, we don't get to just disappear all the time. But if even those momentary blips or rest, examples or abilities to just step away, even for a minute or two, and build on that, I think, it is about building on those moments as well. And like, then really incorporating them consistently, like Megan said, having a day, even if it's a weekend where you just don't schedule anything, or you don't check your phone, or you don't commit to plans because it's just a day to allow yourself to breathe. And I think that is so crucial. And don't follow my advice of checking your phone first thing in the morning because it's not- MEGAN NEFF: [CROSSTALK 00:36:16] I do the same thing. And I've been learning so much more about like low arousal mornings and like, I have this fantasy of like an ideal morning routine. But yeah, I am the same way, Patrick, I- TARA HOLMQUIST: Yes, and then it's a battle, right? Like, okay, I'll go put my phone in the other room, but then the battle is, I want to go in the other room and check, I got to go in the other room and check because how much is building up, you know? PATRICK CASALE: [CROSSTALK 00:36:45]. Yeah, I tried so hard. It's so freaking hard. And I think that's where my, you know, PDA kicks in. And I have this inner personal feeling, maybe it's my own trauma history of having to respond, and having to clear, and having to constantly be like one step ahead. And that goes into my ADHD profile too, of like, I have to do everything immediately, or I'm going to fucking forget. And that feels like internalized pressure constantly because it's like, "You're so responsive. You responded to this email and this message." I'm like, if I don't, I never will. But that feels like infinite pressure that never ever goes away. TARA HOLMQUIST: Yeah, I love that you're tied into ADHD because that also, I think, represented demand avoidance. I'm the same way of like, I don't trust my mind to remember to do this later so I will do it now. And it's small and big projects. Like, if I'm excited about a big project, I like have to get hyper fixated, and do it in a week, or like, send an email right now because it's just like, it's so hard to get myself to do it later, or I'll completely forget. PATRICK CASALE: Yeah, yeah, schedule send has become my best friend for things like that because like, schedule sending emails, schedule sending text, but I can't do that on certain platforms where they don't have that as an option. But like, where it is an option, it is a lifesaver because then I'm like, okay, I can get it out of my head, I can get it cleared off the never-ending list, and I don't have to like message someone at 1:00 AM or whatever their experience. So, it is a challenge for sure. But that is something that's just been an accommodation that I've had to incorporate, otherwise, like you said, Megan, like, it would be gone, or it would never happen. And that just, again, feels like constant pressure. So, maybe a different topic, but ultimately, definitely, a part of the experience for sure. TARA HOLMQUIST: I agree. I think it goes in hand in hand. Like, I know that when I'm under a certain amount of stress like my ADHD symptoms are just out of control, and then, it's this battle between let me get everything done as much as I can because I'll forget. I will forget and then, I'll do a lot of half things. And what I'm noticing lately because I've been exploring all this stuff and like what would it be like if I just unmask, like, what am I actually like, you know? And that's when I realized that, "Oh, I can't remember shit." Like, I actually can't remember anything. I don't know how I've survived 40 years of my life. I don't know how I became the therapist that I am. Like, I don't know how I do any of this because when I'm battling, you know what I trust my mind is going to do or not do plus exploring, like, what would it mean if I didn't have all this avoidance around like these expectations, what am I going to be like? And so far I don't like it so much because I'm not very functional, but we're going to learn to adapt. We're going to figure this out. Megan, I'm just going to be on your website just all the time. I'm just like, what else is she going to say about this? I need help. PATRICK CASALE: Megan's resources are incredible. So, you know, I feel very honored to be co-hosting a podcast with you, Megan, because I'm like, geez, I just think everything you're creating, and doing, and how you're showing up for the indie community is really, really amazing. And yeah, I think, Tara, you know, a lot of over-functioning for executive functioning and deficits, and like, accommodating, and just figuring it out, and, you know, I think a lot of neurodivergent folks could relate quite a bit to what you just said, and you're not alone in that. I know I feel that way a lot of the time, I know Megan's mentioned feeling that way a lot of the time. Like, it's definitely one of our realities. So, I think we're at our awkward goodbye space, which is something we are figuring out as we go. But I do want to thank you for coming on, and just being vulnerable enough to share your side of the story and how you experience this. I think it'll be very helpful for everyone listening. TARA HOLMQUIST: Yeah, no, I really, really appreciate. This has been very validating for me just having you both here, and just talking, and conversating about this because I feel like I'm doing this alone, and you know, just checking people's resources, and things, and feels lonely. So, thank you. Thank you for having me here, experiencing with me. MEGAN NEFF: Yeah, thank you so much for coming on and for using one of your, like, demand spoons to be here. TARA HOLMQUIST: Thank you. PATRICK CASALE: That's going to be the episode title, something about demand spoons. TARA HOLMQUIST: I like it. PATRICK CASALE: I'm sure we will be linking anything Megan has created to the show notes so that you all have access to it. She does have some diagrams on PDA, more information about PDA, and just anything in general. So, that will be in the show notes as well. Megan you got anything to add before we awkwardly close this? MEGAN NEFF: Yeah, just regarding resources, I've got a fantastic masterclass up with Dr. Henderson who is a really wonderful neuropsychologist, who I would say is one of the specialists in diagnosing PDA. So, if you're a clinician looking for like, is it something I diagnose? What are the core features? We don't actually diagnose it, but we can't talk about it in the report, then I would say definitely check out Dr. Henderson's work. And I have a masterclass up where you can kind of hear more of the clinical definition of PDA. PATRICK CASALE: Perfect, and we'll link all of that in the show notes so you all have easy access to it. Thanks for listening to another episode of Divergent Conversations on all major podcast platforms and YouTube. Like, download, subscribe, and share. Bye.
Hello and welcome to the Relatable Voice Podcast! Today, we are heading to Idaho to talk to Korynn Newville. Korynn Newville is an architectural designer, artist, environmental activist, and author. When she is not working or studying, Korynn enjoys camping, biking, and spending time outdoors with her husband and two beloved dogs. Her latest book, "Indiscernible Elements: Calcium," has recently been released and is available now. Find out more at: newvillekorynn.com Learn more about your ad choices. Visit megaphone.fm/adchoices
Picture the immense amount of energy invested in analyzing your emotional responses to every social interaction, striving to decipher not only your own feelings but also how the other person perceived the conversation. Or imagine navigating through life with a constant undercurrent of irritability and anxiety, yet lacking a clear understanding of their origin. These experiences only represent a small fraction of what people with alexithymia may experience. Alexithymia, which in simple terms is difficulty identifying and describing emotions, is a trait that is often associated with autism and ADHD, however despite the fact that one-in-ten people in the general population have this trait (not just Autistic people), there are still many misconceptions about what it is, who it really impacts, and how it shapes their experiences and relationships. Dr. Megan Anna Neff, an AuDHD psychologist with alexithymia, states that a lot of things that have been attributed to autism, for example, difficulty with emotion recognition on faces or voice, are actually due to alexithymia, not autism. In this episode of Divergent Conversations, Patrick Casale and Dr. Megan Anna Neff, talk with guest, Thomas Henley, an Autism consultant, public speaker, workplace trainer, and podcast host of “Thoughty Auti Podcast”, about all things alexithymia. Top 3 reasons to listen to the entire episode: Understand what alexithymia is, how is it related to autism and ADHD, and some common attributes associated with autism that are strongly linked to alexithymia. Identify the ways that alexithymia affects emotional regulation and the ability to connect with others on a deep emotional level. Learn what strategies and therapeutic approaches individuals with alexithymia can use to help facilitate emotional regulation and deeper connections with others. Alexithymia affects many individuals in the general population, so taking the time to recognize and understand the traits, challenges, and experiences associated with alexithymia, can help facilitate deeper connections with others, self-acceptance, and healthy ways to manage overwhelming emotions and situations. Alexithymia Resources Alexithymia articles on neurodivergent insights: https://neurodivergentinsights.com/blog/category/Alexithymia Alexithymia workbook: https://neurodivergentinsights.com/neurodivergentstore/p/alexithymia-workbook Dr. Neff's Alexithimia Training: https://learn.therasmarts.com/courses/Alexithymia More about our guest, Thomas Henley: My name is Thomas Henley, I'm an Autism consultant, public speaker and workplace trainer running the Worlds Top podcast ‘Thoughty Auti Podcast', all about Autism & Mental Health - independently presented, edited and promoted by my Autistic self. I'm also a Commonwealth/British champion in Taekwondo, Biomedical Sciences (Hons) graduate from UoM, Autistic Model, documentary creator of ‘Aspergers In Society' & ambassador for Anna Kennedy OBE & Born Anxious. I was diagnosed Autistic at 10 years old and later developed severe mental health conditions at the age of 14 due to trauma at Secondary School - Clinical Depression, GAD, Bulimia & multiple Dissociative disorders. Most of my content focuses around the low quality-of-life statistics for autistic people, such as mental health, social isolation, unemployment, education, relationship difficulties & self-harm in all forms. I've delivered this information to the government, leaders in SEN education, and the general public through my outreach and social media work. My passion is to help people, it's my meaning to life, my saviour for helping me stay around. My ultimate goal is to improve things for future generations who may just experience the same awful things I have. My content is informed from many angles. During my time at university, I also studied and researched into Autism, Mental Health, Sociology, Psychology, Socialising, Relationships & Philosophy. I also used to be Special Needs TA, I work alongside charities regularly, talk to researchers, Autistic influencers, authors & parents regularly on my podcast, and currently work full-time for a National Inclusion charity. Check out Thomas' resources and content: Thomas' Website: https://thomashenley.co.uk/ Thoughty Auti Podcast (Spotify): https://open.spotify.com/show/6vjXgCB7Q3FwtQ2YqPjnEV?si=BjFjTN9RRm-mG5r4kmxmVQ Twitter: https://twitter.com/ThomasHenleyUK YouTube: https://www.youtube.com/c/ThomasHenley Instagram: https://www.instagram.com/thomashenleyuk/ TikTok (@thomashenleyuk): https://www.tiktok.com/@thomashenleyuk Transcript PATRICK CASALE: Hey, everyone, you're listening to another episode of Divergent Conversations Podcast. I'm your cohost, Patrick Casale, joined today by Dr. Megan Neff, and Thomas Henley, who is the host of the Thoughty Auti Podcast. So, guest number one on our podcast. And Megan and I just released on Friday, and the response has been fantastic, feedback has been fantastic. And we're both overwhelmed as hell, is that right Meg? MEGAN NEFF: Yeah, that's right. We were talking before on air how we're both in scatterbrain today. So, that'll make for a fun conversation or something. PATRICK CASALE: Yep. And I definitely just, like, steamrolled through the intro and didn't even let Megan introduce herself, so sorry. MEGAN NEFF: I know. I was like leaning in too, but actually, I- PATRICK CASALE: Thank God I saw it. I'm sorry for that. Thomas, we appreciate you being here and just making the time. We know you're six hours ahead of me and nine hours ahead of Meg. And I think we're going to talk about alexithymia today. And I think we're also going to talk about whatever the hell is going on in our lives and making us feel so scattered. So, thank you for being here. THOMAS HENLEY: Of course, I think you might have mentioned it, but I wasn't totally aware that I was your first guest on the podcast. So, I'm honored very much, so… PATRICK CASALE: No pressure whatsoever. Megan, alexithymia is a topic that is near and dear to your heart. You talk about it often on your Instagram account, Neurodivergent Insights. And you have tons of resources. So, I would love for you to start us off with why it feels important and why we're talking about that today. MEGAN NEFF: Yeah, yeah. Okay, I'll try to pull thoughts together, cohesion. Here we go. Yeah, so I think it's a really relevant topic to autistic and ADHDers, particularly, just because we tend to be more impacted by it. So, first, just to do my, like, definition of terms, and then go into it, it's actually not a diagnosis. Sometimes people will DM me about like, how do I get diagnosed with this? It's not a diagnosis, it's a personality trait. And it's fairly common. One in 10 people have it. And it's difficulty identifying and describing emotions. So, one in 10 people in the general population have it. Among autistic people, it's about 50% or higher. And then among ADHDers, you know, these studies, there's so much variance, but I've seen, like, between 20 to 45%. And then even those who don't have like, full threshold, they have more alexithymic traits. And this really makes things like emotion regulation, connecting with other people on kind of that deep emotional level a lot more difficult. The other interesting thing about alexithymia is that a lot of things that have been attributed to autism, like difficulty with emotion recognition on faces, or voice, empathy, which autism and empathy is a whole topic, that's huge. All these things, they've done studies, and when they pull out autistic people with alexithymia, and autistic people without alexithymia, autistic people without alexithymia are doing as well as the control group. So, a lot of the things that we've said that's an autistic thing is actually… that's a severe alexithymia thing. So, that, to me, when I read that I was like, this explains why so many people aren't getting diagnosed, for one. For two, when a person is autistic with alexithymia there's some higher support needs around emotional regulation, emotional identification. I actually have alexithymia. Because of my training, I would say I now have pretty mild alexithymia and I've figured out how to adapt to it. But I definitely see how difficulty identifying emotions through my life has led to some hard stuff. So, yeah, that's the clinical definition. Thomas, I'm curious to hear, like, you're really interested in this topic. Where did that curiosity come from? THOMAS HENLEY: I think it's because I have quite a bit of a history with like, emotions. Like, ever since I was very young I was pretty much fascinated by neurotypicals. I was kind of doing, like, the reverse autism specialist thing. I had the fascination of neurotypical people. And I remember from, sort of, early days, sort of, at school, I would look at people around me, people, particularly, during like high school, secondary school age, and they would be doing things with no reason or rhyme to why they're doing it, but they just seemed to have something in their brain that, like, flicked a switch, and then they went, and did something. I now know that, you know, for example, things like dancing, it's not a social display that you're like, "I'm going to do a social display." It's a thing that you do because it feels good, and people feel driven to do things that feel good. And I found that really confusing because I used to analyze the reasons behind a lot of my decision-making. And I think it's, I was reading a book recently, I can't remember the reference, but they were talking about how emotions can be quite a big feed into how we make decisions. So, it could be something as simple as food. You know, you eat something, and then you like, no, you're picking between, like, a cupcake, and like some protein pancakes, and you model eating both of those in your brain, detects how you feel from eating those in that model, and then kind of use your emotions to probably get the cupcakes. So, I think there's a lot of depth to it and a lot of the issues that I had, particularly, in secondary school was emotional dysregulation, a lot of mental health difficulties, but also, not really as much of an ability to notice when my anxiety or my depression was getting worse, and, you know, psychologist's, therapists, they'd give me these anxiety worksheets, but the issue with that is that you first got to know that you're in your anxious [CROSSTALK 00:06:44]. MEGAN NEFF: Exactly, exactly. Yeah, yeah, I talked about that when I do trainings on this of, like, we go from like one, or two, to 10, or at least that's our experience, we're not actually doing that. But we're not picking up, you know, that like emotion thermometer or that stress thermometer, we're not picking up the subtle increase. And so, that's what leads to those big emotional outbursts. They can also look very, like, borderline or bipolar, which is another reason that I think we get misdiagnosed because it's so hard to regulate your emotions if you're not registered, and you're angry, or stressed, or anxious till it's out of 10. PATRICK CASALE: Yeah, and then society's kind of perceiving you, and not how you're attending to react to things as well, and that inability to regulate is so challenging in social situations, but it's challenging in a lot of environments like in the workplace, for example. Like, if you're unable to identify your emotions, that can lead to a lot of workplace conflict as well. And I think that's another reason that we see so many neurodiverse people struggling with neurotypical jobs and environments, is just they're not set up to be successful in a lot of ways and they're not set up to be affirmative. THOMAS HENLEY: It's quite key for, like, enforcing boundaries and stuff like because a lot of people they kind of get a… someone says something that makes them upset, or angry, they kind of get a bit of an emotional jolt to kind of be like, "Hey, actually, that's not okay." Whereas, in a lot of cases in my life, and, you know, from talking to other people, it seems that we just kind of take it, and then we go away and think about it, and come back like a week later, a couple of days later like, "Actually, hey, this isn't good." And I think it can sometimes lead a lot of neurotypicals to not really trust, like, our reactions to things in, like, the present. MEGAN NEFF: Yeah, that is so well said. It can cause so much relationship confusion because the person with alexithymia whether you're ADHD, autistic, or neurotypical, like, we need that space to process, I think. So, reflective emotions is when we're bringing in our prefrontal cortex. I think a lot of us overcompensate for the fact that we're not feeling those more in-the-moment fleeting emotions by becoming really good at reflective emotions. But that takes time and space. And often, we can't do that in an emotionally charged space. So, like, if we're having a, for example, emotionally charged conversation with our partner, we're going to have a really hard time accessing our emotions in that moment until we take some space, and especially, if your partner's more anxiously attached, that space is going to feel like abandonment. And this is where I see a lot of relationships kind of go off the rails, is that dance that kicks up around that. PATRICK CASALE: Yeah, that makes a lot of sense. And I think, you know, you and I are both in the mental health profession. So, I think there's advanced training that goes on behind the scenes, right? Where we're like, okay, now we're starting to identify these emotions, now I'm starting to become more familiar with how I'm feeling, and experiencing, how I'm moving through the world. Not everyone has that luxury, and privilege, and ability to do, so I think it becomes very murky, very confusing. And that's where you start to see a lot of dissociation, and disconnection, and that really frustration, isolation, loneliness paradox that kicks in in social environments. And I think that is so fucking hard for people when it feels so painful to identify what is really happening beneath the surface. MEGAN NEFF: Mm-hmm (affirmative.) THOMAS HENLEY: I think one of the best ways that I found it to like describe what it's like to be electrifying to neurotypicals is like a threshold-related condition. Like, most people, if we put a quantitative number on anxiety levels from like zero to 100, you know, perhaps a lot of neurotypicals they'd be able to tell within the 20 to 50% range that they are at a certain level of anxiety whereas when you're autistic, and you have alexithymia that might be 70, 80, 90%. And a lot of those strategies that we learn to calm ourselves down, I found the most use in like preventative things and like blanket approaches to solving when I was younger, and I didn't really understand it. And it also led to, as he was saying about sort of disassociation, I actually did a lot of reading about it. And it was something that I noticed even when I was very young. And so, I looked into that kind of thing and I was like, "Hey, I have situations in my life where, for some reason, in 10, 15 minutes I feel like a completely different person, I feel differently in my body, I perceive the world differently, I behave differently, I must be a different person." And so, I looked into this dissociative identity disorder, and I was like, "Hey, this is actually what's happening." Because I couldn't feel the emotion. And I had to, like, go through, and just look at all the science, and the terminology, and the philosophy behind different emotions, and really trying to embed that in order to understand it in the future. But I used to have, like, different colors, which, obviously, the colors were related to emotions. But at that time, it just didn't click for me at all. MEGAN NEFF: I think that captures something really important. Yeah, and it's interesting. Like, I don't know what is dissociation, what is alexithymia here, but one thing I notice among autistic people, in general, is a much more, like, fragmented view of self. And so, when you describe that of like, looking into DID… Like, that's actually, I feel, like probably pretty common for a lot of autistic people to look into DID or I'm seeing a lot more about plural systems now because it can be such a fragmented experience when we can't access our emotions, even more so. PATRICK CASALE: Megan, I'm curious about, just in your own life, when you're experiencing alexithymia and kind of the identification, like you're mentioning being fragmented, right? You and I have talked about fragmentation a lot and just feeling so, like there's so many pieces here, and you can always identify or connect them, and how that really is, you know, showing up these days for you, in terms of like, you've built an audience, you've built a presence, you, obviously, have such a wonderful reputation. And I know you and I talk of this off the air about like, when you're feeling really heavy or like when you're really in that space of teaching and researching it can be disconnecting from how you're experiencing day-to-day too. MEGAN NEFF: I actually think I feel the most connected when I'm in my head. And that's part of the problem is it's so hard to be in my body, which I've talked about plenty. So, when I'm in research flow or writing I feel like the most like myself. It's all the other places I occupy that I'm… And right, like that's actually a really common experience with special interests. We often feel most like ourselves when are immersed in our special interest. PATRICK CASALE: Absolutely. MEGAN NEFF: And can access emotions. Like, I see that with my clients, when we start talking about special interests, there's an animation that pops up. Like, we access emotions more easily. Thomas, you were about to say something. THOMAS HENLEY: Yeah, I just find it interesting you're talking about, like, feeling fragmented because before I came across the concept of alexithymia I did a video and like a post called like, My Split Brain. And it was, basically, talking, I found this book called, I think, The Monkey Mind. MEGAN NEFF: Yeah, yes. THOMAS HENLEY: Which is, yeah. And I really- MEGAN NEFF: Go ahead and explain it though because I know what you're talking about, but our listeners don't. THOMAS HENLEY: Yeah, it's like, basically, splitting your brain into, sort of, the higher cognitive kind of prefrontal cortex that uses intellectual things, and logic, and facts, and things to dissect and understand your environment whereas the monkey mind is the emotional brain, like things related to like the amygdala, and drives, and desires, and needs that are important to survival. And the whole book is kind of about framing it as that you do have kind of these two pulling forces. One is like your willpower and your, I guess, more human side. And the other side is like the emotional kind of monkey side. But I found that really interesting. And I felt like it was probably one of the first things that I related to, in terms of thinking about my emotions because I did feel for a long time that I just couldn't, like facts, and dates, and events just seem to be like, ridiculously hard to connect them in my brain. Even if they are apparently clear, the feelings that I have from that event don't feel like they connect with that. And so, I'll got a lot of situations where I've had really bad experience during the day. And then for some reason, I'll just be alone, I feel a bit anxious, and I feel a bit down. Now, why is that happened? And, obviously, I know that something bad's happened in the day, but it just doesn't immediately link. It's like after connecting neuro- MEGAN NEFF: Yeah. THOMAS HENLEY: …pathways together. MEGAN NEFF: Yeah, it's not an automatic process. It's like, okay, I've got to analyze. Yeah, yeah. When I started therapy, like five years ago, one of the things my therapist said to me was like, "You are so like analytical or like, aware." But almost, it wasn't a criticism, but it was a curiosity of like, and it was an interesting moment for me. Like, isn't everyone doing this all day long? Just like analyzing the shit out of their day, trying to figure out why am I feeling this way? And that was a really interesting moment for me because I could tell he was struck by like, how analytical I was about my experience. PATRICK CASALE: It would be nice to know what it would be like to move through the world without analyzing every experience and thing that fucking happens to me, that would be fantastic. It would feel like a yes, maybe, like a pressure relief in a way. But it's just so challenging to move away from that. Like, I have to analyze everything. I'm constantly, like you said, Thomas, can try to connect like, where's this anxious feeling coming from? Oh, yeah, this thing happened to me today, or this thing happened yesterday. And now it's creating these feelings that I can't always associate together. And then, ultimately, it leaves you a bit confused because you can recognize the somatic sensation in your body of like, "I'm feeling anxious." Where is this coming from? Like, why is this feeling so intense right now? Oh, yeah, this thing happened six hours ago. That should create anxiety, but in the moment was not able to connect the dots. THOMAS HENLEY: And that is quite a heavy tendency for, I think, autistic, maybe even neurodivergents as well, but I can only speak from the autistics' perspective, that it is kind of hard to make those… God my brains gone. MEGAN NEFF: Oh, we get it. THOMAS HENLEY: What were you saying, Patrick? PATRICK CASALE: Oh, just connecting those dots, you know, and those associations where- THOMAS HENLEY: Yes. PATRICK CASALE: Yeah. THOMAS HENLEY: It's gone on me, sorry. PATRICK CASALE: That's okay. I think, you know, this is actually nice to see while we're all sitting here because the three of us mentioned we're all feeling a bit scattered today. And it's interesting, like, we're having a very real experience around this conversation. And I can see Megan being very deep in thought when I'm talking, and I'm paying attention to that at my peripheral. But, you know, I think, there's a paradox for me as a autistic ADHDer where association with emotion, and feeling and trying to name it and define it versus like, constant sensory seeking and stimulation seeking, and like, really trying to seek out that intensity as well, and then trying to like connect the dots with intensity seeking to soothe the anxiety in your body. It's really an interesting experience for me. And soccer has been so helpful. Thomas, I know you're really into fitness for that, probably, a similar reason. And [CROSSTALK 00:21:37]- THOMAS HENLEY: … proprioceptive stimming. PATRICK CASALE: I know, I know. I was talking to Megan about proprioceptive stim the other day and needing to have my, like soul, and body crushed back into my body, and how often I feel the need for that. I asked my wife to do that the other day, and she looked at me, and was like, "The fuck are you talking about?" And I was like, "I just need you to do it. Like, I'll explain it to you later. But I need you to do that." And I think that's a very, very typical experience for me on almost a daily basis. THOMAS HENLEY: I think that there is a tendency sometimes… I've remembered what I was going to say. I think that there's a tendency sometimes with autistic people that we need to know the reasons for things. And sometimes in a lot of cases you don't always need to now. Like, it could be useful in some cases to know why you're feeling a certain way. And sometimes it might just be, you know, good to just chalk it up to possible stresses, like mental health or so, where it plays things being too productive, not getting enough rest due to special interests. And I think sometimes getting in my head about how I'm feeling stops me from like focusing on other things that I'm doing, that are helping with my stress, and my emotions. So, unless I'm feeling sort of a deep, aching issue, or that, you know, it's perhaps related to a relationship or a friendship, or if I'm having quite bad mental health crises or lows, then it's useful for me to go for and pick that. So, there's that. And I also think that creator autism from the inside, we were talking about alexithymia on my podcast, and we were saying that can be quite a large burden for using your, like, higher cognitive brain to do things that are quite simple, or quick, or emotional based like social communication. So, it really made me kind of think about, you know, like, how much effort am I putting into situations that don't really matter in the grand scheme of things? That kind of mentality. MEGAN NEFF: I really like how you're balancing kind of the autistic need to know because I agree that's super regulated when I can pinpoint to like, oh, this is why I'm feeling that way. I say it calms my amygdala down, just calms everything down. THOMAS HENLEY: Fixated at the core. MEGAN NEFF: But balancing out... What did you say? THOMAS HENLEY: Fixated at the core. MEGAN NEFF: Yes, yes. THOMAS HENLEY: It's the reason that everything will be okay. It's like when you get really stressed about finishing a task on the computer and the programs aren't working. It's like, really easy to get that done, and then, you'll be okay whereas sometimes [CROSSTALK 00:24:45]- MEGAN NEFF: Well, I think it's [INDISCERNIBLE 00:24:56] partly because it just produces uncertainty. Like, it's like, okay, I can track why I'm feeling that way. But what I really like is how you balance it with acceptance. For me, in my training to become a psychologist, I probably did a bulk of my training in motor therapy called acceptance commitment therapy or ACT, which is all about kind of accepting our emotions. It doesn't mean we have to like them, but accepting they exist and then asking, "Okay, but how do I continue to move toward what matters to me, to move toward my values?" And that was probably one of the best things for my anxiety, was learning an element of acceptance. It was yes, sometimes I can locate like, okay, my routine's off, this, that's why I'm anxious today. Other times I can't and it is about that, "Okay, how am I going to hold this and live with this and continue to move toward what matters to me and not let it completely derail my day?" THOMAS HENLEY: It's prioritization, I think, the way you put your energy and so… MEGAN NEFF: Yeah. PATRICK CASALE: Yeah, I think you make a great point, Thomas, about that because I do think a lot of autistic people are using a ton of cognitive energy to really figure out meaning behind everything. And it's just unbelievably exhausting. And Megan, you and I have talked about, like, replenishing, and trying to like recharging and being able to soothe, but sometimes it's really challenging to replenish that energy, and then you're playing catch up all the time. And I think that's why so many of us are just going through the world feeling really, really exhausted all the time. And I like your example, Megan, with acceptance and commitment therapy, and, you know, I've talked about, like, IFS, as well, internal family systems. And that has been very helpful for me to have like parts work because I can't always identify what's happening in the moment, or what I'm experiencing, or how I'm feeling. And if we're getting really cognitive, I really can't identify it then. But if I can break it into parts, like a part of me is feeling overwhelmed, and it's okay for that to show up, and I'm going to accept that, and I don't need to find out the meaning of why. I just need to accept that it exists. And there are other parts of me that are feeling okay or feeling more grounded. And that's been pretty remarkably life-changing, if I'm being really honest about it like that work has been so tremendously supportive in the last few years. THOMAS HENLEY: I think it was really important to mention the aspect to, like, the certainty around things because I feel like it's kind of weird because if you study neurotypicals, like I have, and just discovered this, like, so obsessed with understanding what's going on in their brains, I think there's a lot of situations where we give ourselves a hard time for not understanding certain things. Like, neurotypicals tend to talk a lot about things like read the room, and understand the hidden meaning, and understand things just from the flow of the conversation. But from my experience, particularly, in the workplace, or within friend groups, a lot of people that you talk to individually after those big sort of group conversations, they have completely different ideas of what's gone on. And I felt like, you know, we do have that drive to try and find that certainty out, specifically, like, around emotions and social things which are inherently so uncertain and emotional. It can be kind of hard for us. And it's kind of one of those things that I think a lot of neurotypicals they go with what they feel from the situation. And then, that's the truth. But compare and contrast each person in a certain group conversation, it's completely different. It's just that we like to know exactly what happened, and exactly what people are wanting, and exactly what they're trying to say. MEGAN NEFF: There's a TV show called The Affair. I don't know if either of you have watched it, but I've found it so interesting because… and I think there's maybe a few shows that do this, but they, like, really lean into it, the first season, at least, where you see this exact same episode but from different people's perspectives. And so, like, the characters will be wearing different clothes and different people's memories. And it's just so interesting, that idea of subjectivity, of everyone's experience of the same conversation, and then how it encodes in memory is wildly different, which is, frankly, terrifying for me. And someone who is anchored in like facts and logic of like, how did you get that from this conversation? But brains are weird. And the way we experience something is so heavily filtered by our past experiences, our beliefs, our biases. It's wild and terrifying. THOMAS HENLEY: Definitely agree. MEGAN NEFF: Like, all of us are going to walk away from this 40 minutes we spent together with different memories, different experiences. PATRICK CASALE: And probably our own different- THOMAS HENLEY: Perspectives. PATRICK CASALE: Yeah, exactly. Different perspectives and interpretations, right? Because I'm the type of person who will walk away and analyze like, was that a good conversation? Did it feel meaningful? Did I show up the way I wanted to show up? All of those things will be running through my mind the rest of the day. So, yeah, it's just really interesting. Brains are weird. MEGAN NEFF: I'll actually be having similar questions. I'll also be like, why was I so foggy during that conversation? What was happening? Like, I'll also be thinking about, like, the relational dynamics, but also like, will that be it? Was that cohesive enough for a podcast? Was that a meaningful experience for Thomas? Was that worth his time to have him on? Yeah. PATRICK CASALE: Yeah, yeah. THOMAS HENLEY: I can confirm for [INDISCERNIBLE 00:31:17] certainty that it's a meaningful experience. I love chatting to you. And it's really nice to chat to you Patrick, as well. PATRICK CASALE: Thank you. Is this our awkward transition goodbye time because that's how I'm reading the interview [INDISCERNIBLE 00:31:32]. THOMAS HENLEY: I don't know how you guys wrap things up, so- PATRICK CASALE: We don't always- MEGAN NEFF: Do we want to say anything about where to find Thomas' work? And then wrap up? PATRICK CASALE: Yeah, Thomas, if you'd love to share with the audience where they can find you or what you're doing in the world, and what you're putting out there. THOMAS HENLEY: Sure, you can find my podcasts, the Thoughty Auti Podcast on YouTube, Spotify, any of the podcasting streaming services, or you can check out my Instagram page @thomashenleyuk where I make daily posts and about two reels a day, autism related. PATRICK CASALE: Your Instagram account is awesome. I mean, I found your stuff because Megan was on your podcast, and shared some of that, and I was watching, and really, really cool stuff, a lot of information, a lot of humor thrown in which I really enjoy, and a lot of really cool perspective. So, really appreciate just being able to have this time together and spend the last 40 minutes talking about all of this. THOMAS HENLEY: Thank you very much, Patrick. PATRICK CASALE: You're welcome. THOMAS HENLEY: I appreciate that. PATRICK CASALE: To everyone who is listening to the Divergent Conversations Podcast, new episodes are out every single Friday on all major podcast platforms. Like, download, subscribe, and share. And goodbye.
Travel and the act of experiencing people and places is something that is generally talked about with excitement, but for Autistic people, it can be a much more complex experience. Patrick, who hosts entrepreneurial retreats for therapists all over the world and travels often for extended periods of time, shared that despite loving to travel, the experience of hosting retreats and being away from home could also feel torturous at times, like having exposed nerves that were shocked by all things sensory. When talking about travel and social interactions, Dr. Neff expressed that it "feels like the decision is to have a really small life or to lean into experiences, but to be constantly confronted with the too-muchness of the world." In this episode, Patrick Casale and Dr. Megan Anna Neff, both AuDHD mental health professionals, share their diverse experiences and feelings about travel, social interactions, and sensory overload. Top 3 reasons to listen to the entire episode: Understand the challenges and experiences of neurodivergent individuals while traveling and in stimulating social spaces. Identify ways that travel can provide positive stimulation for Autistic individuals through new experiences. Learn ways to manage and do self-care and self-advocacy when feeling sensory overload during travel. Travel and social situations can be challenging for neurodivergent individuals, but through vulnerability and a commitment to self-care, it is possible to find strength and joy in the pursuit of exploring new places and experiences. Transcript PATRICK CASALE: Hey everyone, you're listening to another episode of Divergent Conversations. I'm your cohost, Patrick Casale. DR. MEGAN NEFF: And I'm Dr. Neff. PATRICK CASALE: And today we are going to talk about traveling and our neurodiverse experiences while traveling. I just got back from 30 days in Europe and work retreat mode. And I know you and I were talking on Instagram a lot about what the experience was like, and how I was showing up, and impacted. And it was a lot. DR. MEGAN NEFF: Yeah, yeah. It's interesting because, you know, from the Instagram messaging we were doing, I could tell, like, the drain that you were experiencing over there, and I'd love to hear more, like, in person, well, in Zoom person, what your experience was of traveling. I know you love traveling, and we've talked about that before, but I also got the sense that this trip… I don't know, was this trip different for you? PATRICK CASALE: It was really testing for a lot of reasons, you know? Like, 30 days abroad, away from home, away from my partner, and my dogs, and my bed. Like, those things, I think, would be challenging for anybody in a lot of ways. I think the things that were like, really evident for me and really challenging for me was, one, I traveling with a friend and business partner. So, like, I did feel- DR. MEGAN NEFF: Oh, the whole time? PATRICK CASALE: Yeah, the whole 30 days. So, I felt like a lot- DR. MEGAN NEFF: My daughter and I were just talking about this, about how, like, being alone versus being with someone else you're tracking makes a world of difference. I thought you were alone. I didn't realize you were with someone. PATRICK CASALE: Yeah, yeah. So, tell me a little bit about what came up when you and your daughter were talking about this? Because I'm sure it's very relatable and similar to what I was experiencing. DR. MEGAN NEFF: Yeah, I mean, it was interesting. My husband had taken them to Olive Garden, which is their, like, favorite restaurant. And I, typically, don't go. And it's kind of a sweet moment, my daughter had just had a meltdown, and was having a lot of kind of shame around that. And I was, like, reminding her, like, you know, this is your body having a response, this is outside of your control. And she was asking me about, like, meltdowns. I was like, "I have more shutdowns." And I was like, "You know, that's, like, why I didn't go to the restaurant with you all because I know, like, I wouldn't be there." And so, we were talking about shutdowns, and then we were talking about how… she's like, "Yeah, you know, I noticed it's easier for me to be in public or to be like…" She's like, "That's what I liked when I wasn't in person schools, is I only had to track myself. I wasn't tracking, like, what my brother was doing, or you, or dad." And I was just relating to that. Like, yeah, like, it's so much easier for me to travel alone, to go to a coffee shop alone, just to be in the world alone. When I'm tracking my children, when I'm tracking my dog, when I'm tracking my spouse, it's too much. PATRICK CASALE: Yeah, and it's multi-faceted, right? Like, that's very layered. Like, there's a tracking, I imagine as a parent, where it's like, this is kind of my responsibility to track, and then, like, the tracking that goes on when we're constantly tracking body language, and absorbing energy, and just responding to, and kind of almost like anticipating, and trying to attune, and trying to be connected, and trying to respond appropriately, and all the things that go into relational dynamics. DR. MEGAN NEFF: Yeah, yeah. PATRICK CASALE: Yeah, it was so hard in so many ways. But I think I anticipated that. Like I knew going in like, this is not going to be an easy 30 days. Like, for most people on the outside looking in, if you're saying like, "Oh, I'm traveling from Greece to Italy, to Spain, to Portugal." People are like, "That's fucking amazing." And I don't want to discount that either because there were amazing moments. But man, it was just constant tracking, and energy absorption, and overwhelm. And you're talking like planes, trains, automobiles situation where you're living out of a suitcase, you can't get settled. DR. MEGAN NEFF: Yeah, that's a ton of transitions you did in 30 days. PATRICK CASALE: Yeah, we stayed in 10 different rentals in that 30-day [CROSSTALK 00:04:24], in four different countries. So- DR. MEGAN NEFF: Is that how you typically travel? PATRICK CASALE: No, this was very specific because we were there to host a retreat in Spain at the end of April, but we were also there to find venues for 2024, retreat destinations, and confirmations. So, we were meeting with, like, hotel managers, and venue hosts, and [CROSSTALK 00:04:52]- DR. MEGAN NEFF: And see your people then as well. PATRICK CASALE: …and peopling all the time. So, it was like going on tours to not only, like, highlight this is what we're going to do when all of you come here next year, but also, to meet people, and build connections. And so, it was constant. And I found myself significantly more quiet than I usually am. And I'm usually quiet in general, and then, feeling really disconnected, and also just like, really having to be very intentional about energy. So, there were days where I was like, I'm not peopling today and I would tell my friend, "I can't commit to what we're going to do tomorrow, I'm just going to stay in the Airbnb." There was a night at the retreat in Spain where I was just over it. Like, we had gone to Barcelona. There was a group of 32 of us and I was very often, like, the one who was like tracking, but also for safety purposes, like, making sure we have our group, making sure everyone's together, like all the things in a very, very crowded, overstimulating city in Barcelona, with people everywhere. And, you know, I just was like, I got back to the venue that night, and they were getting ready for dinner. And I was like, "I'm going back to our Airbnb. Like, I'm just going to walk down the hill, go into my room, watch Netflix, like, not do this thing." And thankfully, having the ability to do that was an option, but holy shit, a lot. DR. MEGAN NEFF: Yeah, that, like, I feel kind of overwhelmed just hearing about all your… Like, I knew you were looking at retreat sites, but I guess I didn't think through kind of the logistics of how much transitions, and peopling, and yeah, that wasn't really a vacation, huh? PATRICK CASALE: No, not at all. I don't think we had many restorative, like, relaxing days. And it's a matter of, like, being on the go then having to attend to someone else, and attune to someone else, and track someone else when I wanted to just be alone, and just be like, I don't want to talk to anybody. And I will say my friend and business partner did a great job of acknowledging like, I can tell this is where your energy is, and I'm not going to push that. And that was helpful. But there were definitely days where I was rendered pretty, like, unable to do anything besides get out of bed, and like eat, and take care of my basic needs. And for me, I think that brings up a lot of shamefulness still to this day, where I'm like, "Why can't I push through this?" And it's really nothing to push through, it's like you're overstimulated, and you need to really ground and regulate. And I think that, for me, it still brings up some psychological and emotional like thought processes and experiences where I'm like, "Why can't you just fucking do this? Like, why can't you get up and go have this good time with this group." And I'm like, "I can't do it. There's no way I can do that." And asking for what you need in these moments is crucial, but I know it's also challenging for a lot of people as well. DR. MEGAN NEFF: That experience right there, that moment of like, why can't you just push through this and like, go enjoy this group, I feel like now I understand it. But before I knew I was autistic, I would have that experience so much. It's what I called years ago, with my therapist, before I knew I was autistic, the Plexiglas of like, I cannot get into my experience. And I'd be in these, whether I was at a family gathering, or especially, like an extended family vacation, or a social gathering, or a group dinner. Like, I would be sitting there in my head being like, "Get into this experience, get into it, get into it, get into it." And unable to. And I'd have so much confusion around why I kind of get into my experience, so much shame around it. I would start, like, doubting kind of my key relationships of, does this mean there's something wrong with my relationship, that I can't be in this experience? But that to me, that kind of when the body puts the brakes on, and it's like, no, like, you're staying in bed today or like you just can't go do that group thing, like you were talking about that experience in that hotel, to me that is like one of those grief moments when I talk about grieving my autism. Like, that is a moment where I grieve being autistic. Those are fucking painful. PATRICK CASALE: Yeah, yeah, they're really fucking painful. And in your moments, like, your body is then saying, like, having that like, "Finally, like, this is what I needed." But your brain is not saying that to you when you're laying in bed and trying to like recover. What my brain is saying is like, "How can you trick your body into continuing to push through even you don't have anything [CROSSTALK 00:09:48]." DR. MEGAN NEFF: Yeah. How can you bypass this thing your body's doing? Yeah. PATRICK CASALE: Yeah, exactly. Like, how can I do these, like, mental gymnastics of, "Oh, it's okay." Because you're going to, like, fuel up on caffeine, or like, you're going to, like, numb out on alcohol. And that's how you're going [CROSSTALK 00:10:05]. DR. MEGAN NEFF: Yeah, the two options, yeah. PATRICK CASALE: Yeah. DR. MEGAN NEFF: Oh, gosh. PATRICK CASALE: And, you know, I definitely paid attention to that throughout the 30 days, like, well, you drank a lot in 30 days. And I thought, if I didn't, in those moments, like, it would have felt so overwhelmingly terrible to feel that constant buzz of like anxiety, and tension, and like, constant overwhelm. It was almost [INDISCERNIBLE 00:10:31] and I know we're going to have to do an episode on substance use at some point, but- DR. MEGAN NEFF: I was literally just thinking that. I was like, we've got to talk about alcohol. PATRICK CASALE: Yep, but it was challenging. And, you know, as someone who hosts these events, I will find myself defaulting to like, movement, you know, which is like, cleaning up after 30 people. Like [CROSSTALK 00:10:53]- DR. MEGAN NEFF: Oh my gosh, yeah, that is always my… partly it gives you a role. PATRICK CASALE: Yeah and it's allowing you to like, just be in motion, you know? And not having to talk or process what's happening, which further creates exhaustion and exacerbation in your body because your body is like… And what I was noticing and I wanted to message you this while I was noticing it was like, everything was intensified, right? So, like, the throbbing of your feet is intensified, the pain in your back is intensified, your frustration tolerance and irritability are massively intensified, everything's heightened. And my friend said it to me one day in like one of our last days in Portugal when I was describing, like, how torturous this experience feels like because she's neurotypical, and she's like, waking up bubbly every day. And I'm like, "How the fuck do people do this, first of all?" And she was like, "It sounds like your experience in life is like a open nerve ending that is just being, like, shocked all the time by everything." I was like, "Yeah, that feels pretty freaking accurate." DR. MEGAN NEFF: That's so interesting. So, again, before I had the autism, the way I used to describe my daughter was as if her nervous system was on the outside of her skin, like just a live wire of nerves. And there is something that so viscerally captures the artistic experience with that idea of an open nerve. Yeah, that feels really relatable. PATRICK CASALE: Yeah, and I think, like, once you're able to, like, relate to that, and kind of create that picture for somebody else who doesn't get it, it offers a lot of, like, insight into what day-to-day is. But I think, again, circling back to what you said about that grief is that creates an enormous amount of grief because there's no protective like armor that you're putting on and when you have to go out into the world, so it's one of those things where in that moment when you're like, Yeah, that does describe my experience, that is how it feels. And then, my brain's like, "What is the alternative?" DR. MEGAN NEFF: My life. PATRICK CASALE: My life. DR. MEGAN NEFF: I rarely leave my house, yeah. Yeah, I mean, I could get emotional talking about this. Like, it does feel like the decision is to have a really small life or to lean into experiences but to be constantly confronted with the too-muchness of the world. I don't like either option. But that's kind of what we have. PATRICK CASALE: I can feel like emotion for you knowing that our worlds are vastly different in terms of how we're experiencing them. And I think you're right, there's no middle ground here. Is there? Like, I don't know who's found it? I would like to know. DR. MEGAN NEFF: Yeah, and I guess, now, my, like, I don't know if it's guilt or my protective instincts are coming in of like, I'm sure there's a middle ground, and I'm sure that's my all or nothing thinking saying like we've got two terrible options here. I think there is, I think nature actually provides a middle ground. Like, the one place I can go outside my home and feel restored in nature. And I'm Oregon, so whether that's the coast or I live near a forest, so going on walks in the forest. And it not only doesn't take… I mean, yeah, it's the one place I can go out in the world and it recharges me. And so, I think nature and green space can be that sort of in between space or like for me, I can't really do restaurants but if I'm eating outside at a restaurant that works so the outdoors. I really live in the wrong state. I mean, it rains, like six months out of the year here. Ever since we got married I've been asking my spouse like, "Can we move to California? I miss the sunshine." PATRICK CASALE: Yeah, that's fair. I think that's a good point, like nature is a good middle ground, such a good regulatory place for people and grounding space. I think that's what was challenging is like, big city, followed by train/planes/chaos of airport or train station. And then like, having to show up, and do the agenda, or the itinerary, or meet with the tour guide, or this person, and like, one I hate being boxed in by fucking scheduling. And that just creates even more immense pressure, I think. But ultimately, it also is just so tiring, like, for any human being, but it was just unbelievably overstimulating. And I just felt so overwhelmed throughout those 30 days. And before I left, I told my therapist, I said, "I know these 30 days are going to be really fucking hard, and here's what I would like my goal to be, is that I would like to go into it knowing that most days are going to be a challenge. But I would also like to somehow be able to acknowledge the little things, like the beautiful scenery that I get to see, and the good food, and the good conversations that come up with random people that I meet, and I'd like to be able to have both exist and be true." And I do think that was captured because although I would say the extent of the 30 days was unbelievably overwhelming, and I don't think I could ever put myself through another 30 days like that, there were good moments, too. There were definitely moments that I can anchor into, and remember. And I think that's the way that I can get through those experiences is to acknowledge like, all right, this sucked, but one glimpse of like, positivity, and solid connection, and food that was good, or like beautiful stuff. And I think that was helpful for me, for sure. DR. MEGAN NEFF: Yeah, yeah, yeah. I mean, that ability to hold the both ends and to intentionally be like bringing into mind the sensory pleasurable moments and the delight. Yeah, yeah. PATRICK CASALE: Such a therapist way of thinking, too. Like [CROSSTALK 00:17:36]- DR. MEGAN NEFF: It really is, yeah, yeah. I'm doing… in a couple months, my workbook on gratitude. So, I've been diving into the gratitude research of it. It's been a good reminder of like, yeah, like, what we're priming our brains to see, like, we will see, and the power of that. I'm kind of diverging, I guess, it's literally called Divergent Conversations. So, I guess I don't need to ask permission for that. But this idea of gratitude and sensory overload, also I'm processing as I'm talking, this doesn't always go well. But I think that's part of what makes travel for me a more okay sensory experience, is it feels like it's selective sensory overload. Like, I know I'm opting into that and I know why I'm doing it. And it's because of the value of, like, having a new experience and engaging with other cultures. Like, these are such high values for me, that I've somehow psychologically prepared for the sensory overload. And so, then when it happens, it feels like I have, like a sturdiness, psychologically, to hold that. Like, if I go to the grocery store, and I get sensory overloaded, the narrative that starts running is like, "Dammit, I can't even go to the grocery store." And then, it starts running this narrative of, like, the shame, and the grief, and the like, throwing myself a pity party for how limited my body is. But if I get sensory overloaded when I'm, you know, in Germany, with my son having an awesome experience, it's like, yeah, I signed up for this, I chose this. So, there's a more empowering narrative that comes on my mind around it. And my travel experience last summer was a really powerful realization of, I mean, sensory overload is sensory overload, but also, and also, the narrative we tell ourselves about that sensory overload impacts our experience of that sensory overload. And that was a really powerful discovery for me after Germany of like, okay, I can handle this more than I thought I could. And just, I mean, yeah, I can use accommodations and there's some things I can do to manage sensory overload, but there's a lot of that that's outside of my control. But I can have some influence over the story I'm telling about the experience, if that makes sense. PATRICK CASALE: Yeah, it makes a lot of sense. I think that feels somewhat freeing in a way to know like, there is the ability to almost train your brain or at least prepare your brain, and strengthen it to say, like, I acknowledge that this is going to be overwhelming, but the payoff is worth in a lot of ways, too. And I think that's what travel is for so many of us, you know? Like, this romanticized idea of like, what life can be like, but then also, it is like, new sights, new scenery, new smells, new sounds, new people. And that stuff is on the positive end of the spectrum for me, in terms of stimulation, opposed to the opposite side, where it's like, everything is just too much all the time. But you're right, if I go to the grocery store, it's a fucking nightmare for me. So, like [CROSSTALK 00:20:58]- DR. MEGAN NEFF: Yeah, it's like the mustard was not worth that or whatever. PATRICK CASALE: Exactly. I mean, so being able to select and, you know, you and I have talked about time, and energy, and how important these things are, and maybe that's a big part of it, too, is just the acknowledgment of the intentionality behind the planning, and the trip, and, and knowing that, yeah, it's going to be overwhelming, but here's what's important to me in life. And I know that if I'm going to spend X amount of energy, I'd rather do it doing than leaving my house to run errands or whatever the case may be. DR. MEGAN NEFF: Yeah, yeah, yeah, that kind of selective and value-based choice around… And that's, again, where, like, you know, the conversation of privilege comes back in, right? You and I both have the privilege of being able to work from home. So, some people are using all their sensory spoons on work and that's it. And then, they're coming home, they're crashing, they're waking up to an end. Before I was working from home, all my sensory spoons was going to work and I was, like, going into deficit. So, it's also, like, not always a choice for people. It's all going towards survival. PATRICK CASALE: Yeah, absolutely, absolutely. It's a great point to make, and just to remember, as well, and reframe. Yeah, you know, it's an interesting topic. But I use the platform in a lot of ways, like, one of my talks was on neurodiversity at our retreat. And that was really powerful to have 30 people sit there, and like, experience that, not only those who don't know, me or who do, but like people's spouses who came on the event, and like, speaking of folks, I thought that was really fucking cool. So, those things energize me. So, I was trying to like, okay, if your battery is at 28%, you know, how can you give X amount of that to this talk, and then crash afterwards? So, I was trying to get permission to like, and I will say that in my talk too, like, after I'm done today I'm done. And another thing I noticed for myself is task switching is so challenging, like, at the end of three days of this trip we went from Spain to Portugal, and the retreat was over. And I noticed as soon as the retreat was over, I was like, "I'm done. Like, why am I continuing on this fucking trip? "And I just realized, like, okay, in preparation next time, once the event is over, everything's got to come to an end because in my mind everything is now finalized and wrapped up. And I'm trying to convince myself, like, to be able to get through the next three days in a new country. So, it was very interesting experience. And I met some people along the way. Like, I was on a food tour one night in Spain. And this woman, it was just my friend and two other people that seemed to be the gist every time we went on a tour, it was just either my friend and I, or one or two other people. Must have been shoulder season. But after two or three hours, she looked at me and we were, like, walking across this bridge, was like 10 o'clock, 11 o'clock at night. And she's like, "Are you autistic?" And I was like, "Hmm, strange question, but ballsy." And I was like, "Yeah." And she's like, "Oh, my daughter is two and I just noticed a lot of similarities here." And then wanted to pick my brain about a million things about how I can help her daughter. But I thought that was very cool because like, I am trying to do everything in my power to support her and have a relationship with her, and you know, I don't know what to do, and it was just, I think, it felt like a great moment of connection to just be able to be transparent, and vulnerable, and also, offer some guidance as well, and some feedback, and support. DR. MEGAN NEFF: This happens too. That happened at the parade. Well, I think you may be self-disclosed at the parade with the kid who is, I think, autistic, ADHD. That's a really interesting… So, the idea of like, being visibly autistic, Devon Price talks about that in his book a lot as like that's a form of self-advocacy. I guess I've made some assumptions of where I wouldn't think you would be visibly autistic to where a stranger on a train would be asking, "Are you autistic?" That's really interesting to me. Do you think you present like, what am I trying to ask? I guess I'm trying to ask, yeah, like, do you feel like you present visibly autistic? What's that experience like for you? PATRICK CASALE: I think that when I'm not in the mood to do something, I probably present pretty visibly autistic. DR. MEGAN NEFF: Through stimming or through like, in what…? PATRICK CASALE: Stimming, very short answers, not making eye contact when I respond to things. Really not… and I'm very, like when I don't want to be somewhere it's pretty well known that like my body language, and my facial expressions, and probably affect gets flatter, but I didn't want to be there at that food tour. Yeah, I was exhausted, and I was like, "I don't want to fucking go." I'm glad I did. But like, yeah, I think it's one of those situations where… But I thought that was an interesting question. You know, we were also in a small group all night, so there was some, like, conversation going on and there was some socializing going on, too. But it was just very interesting to me to be, like, out of the blue as we were, like, finishing up and wrapping up. Like, "Oh, by the way, is this a thing?" And I was like, "Okay, yeah." But you know what's interesting, if we would have had that conversation earlier in the night, I would have been all into the experience. Like, I would have been, like, yeah, way less removed from it instead of just being, I'm just here, I don't want to fucking do this. DR. MEGAN NEFF: Yeah, yeah. Okay, I feel like in public I'm the same way, short answers, like, yeah, flat affect. I think it just gets coded as like, for women as like bitchiness, or mean, or standoffish, but then again, she had an intimate knowledge of autism because of her kid. That's really interesting. So, my son just switched to at-home learning, but he was going to school before that. And there's a parent who I'd often see at drop off and pickup. And I was like, "Okay, I can tell they're autistic." And I thought about like, do I go up and ask them, and like, make this connection? But then, I was like, but will they experience that as offensive? Like, it was this really interesting moment of like, when I can kind of tell someone's autistic, and I want to make that connection, but then I have no idea how they are… A, if they're aware they're autistic, B, where they are in their process of like, integrating that as an affirming part of their identity. So, it's always an interesting experience of also not just being visible, but then, also when you're kind of tracking other people who are visibly autistic, and then whether or not to ask, or, yeah. PATRICK CASALE: Yeah, I agree. I mean, I think that once you have a very good understanding of yourself and what to look for in people, it becomes much more apparent in a lot of relationships. And I feel the same way where I'm like, "Oh, do I want to have this conversation?" But, usually, opt not to until someone brings it up. But like at the retreat, even, I was paying attention to people around me, like, because I was like, I have a sense that some of these folks are probably not aware that they're either autistic, or ADHD, or autistic ADHD. And I was just paying attention to their social interactions, and their body language, and how they were moving through the experience. And then, some of them came up to me afterwards and self-disclosed and was like, "Thank you so much for just talking about this openly all the time because I can't do that. "And I think that, you know, hopefully, that's the goal of this podcast for us, for people is just to be able to talk about it more openly together. DR. MEGAN NEFF: Yeah, that's probably one of the top themes in like DMs or emails is people, especially, people in our profession, the mental health profession who are autistic or ADHD, but want to be, like, financially safe, or career safe, to be out there. Like, number one thing is like thank you for being visible, which, honestly, I don't know how much, like, I think it was a combination of, like, privilege and naivety, and impulsivity, that I, like, just came out as autistic, and yeah, changed my life around. But yeah. PATRICK CASALE: I think it is a privileged place to be able to openly talk about it all the time. But I'm glad that it is impactful too, you know, because I know at one point we're going to have a different conversation on the podcast about stuff you and I have been DMing about and in terms of self-diagnosis, and social media influence on [INDISCERNIBLE 00:30:37]. And, you know, it is something to think about too, about like, being openly outed, and on social media, and doing that in a way where you don't have a lot of control over the narrative either. DR. MEGAN NEFF: What do you mean by that? PATRICK CASALE: So, if you're putting it out to the world, like, I applaud you, and 100%, but you don't always have control over the impact or the fallout that can cause from doing that well. Like, family, friends, colleagues, you know, unfortunately, there can be a lot of trauma that is inflicted too. So, it's just a challenge to figure out, like, when is the right time, and is there a right time for everybody? And I think it's important to have these conversations. DR. MEGAN NEFF: Yeah, yeah, yeah, absolutely. I kind of tend to caution people post-diagnosis discovery, like, sit with it before you kind of start disclosing. PATRICK CASALE: Yeah because I think there's such a desire to like, claim, right? And identify. And I think it's really powerful and empowering. But I think there can be ramifications that you're not looking for, unfortunately, and… DR. MEGAN NEFF: Oh, absolutely, absolutely. And you've got to have the confidence in the diagnosis to withstand all the people in the life. They will often say like, "No, you're not." And then compare you to like their seven-year-old white nephew. So, that's one. And then, you've got to have like, energy spoons to educate people as you disclose so that… there's so much, yeah, and then the, like, unexpected fallout. Sometimes it's really beautiful. Like, sometimes there's that ripple effect of like, many people in the family system then get identified or diagnosed. And it's this like, beautiful new lens that brings people together. But yeah, sometimes it goes really sideways and becomes this divisive thing. PATRICK CASALE: Well, that's good foreshadowing for a future episode. So, I don't know why my brain diverged there. But you know, that's on my mind as well. And I think that it's just something I feel good about right now in terms of being able to have spoken about that, and have private inside conversations with some people over the last couple of weeks. And it's been cool, because I mean, it's just great to see more and more people talking about neurodiversity in general. And it feels good that there seems to be a really proactive advocacy movement right now. DR. MEGAN NEFF: Yeah, yeah. I started in this space almost two years ago, and like, oh, my gosh, in the last few years a lot has happened. PATRICK CASALE: You're a big part of that, too. DR. MEGAN NEFF: It's weird. I don't, like, see myself that way. Like, I think I somehow objectively know that's probably true, but like, I don't experience it that way or I don't know, it's weird. PATRICK CASALE: Yeah. Well, we're in that awkward transition time, so… DR. MEGAN NEFF: Yeah, is it our time to do our awkward goodbye? PATRICK CASALE: Yeah, I think it's time to do our awkward goodbye. And, you know, I think, also, just really excited to be releasing on Friday, not that anyone who lives is going to know that but… DR. MEGAN NEFF: But yeah, but this Friday we'll be releasing episode one, and two, and then, yeah. Oh, wait, okay, before we leave, yeah, I'm actually curious, like, how are you feeling about us releasing? Can we talk about that here? PATRICK CASALE: Yeah, for sure. Nobody's going to hear this for weeks anyway. DR. MEGAN NEFF: Yeah. That's why I think it'd be kind of interesting, actually. PATRICK CASALE: I think it's, you know, I already have a podcast that has a following, but this is a different type of podcast, you know? Like, the other one is much more entrepreneurial and focused on like mindset stuff, and the episodes that I've done with you, or with other neurodivergent entrepreneurs have always been hits. And I've enjoyed them quite a bit. But I think there's a added layer here of vulnerability and intimacy. And like, this is a topic that is our reality, right? Like, and I also think I also acknowledge the fact that these types of conversations are going to be really impactful and emotional for a lot of people who listen, and I think that feels like some layer of responsibility there in a way of, like, how we show up. I don't know. I feel like it's complicated, but I'm excited for it to get out there. And I've enjoyed our process for figuring out how to best do this together, and how to navigate timing and scheduling, and the trip, and just trying to stay in a rhythm together, and honoring what we both need when we don't feel up for it. Like, I think it's been a cool experience so far. What about you? DR. MEGAN NEFF: Yeah. It's interesting. I mean, I'm really excited about this project. I think when we started talking about doing it, I was really intentional of like, I want to move beyond education, which I should probably think about, like, do I actually have the luxury of doing that as someone who's a psychologist. But anyway, back to intent, I was very aware, like on Instagram, on my website, it's pretty educational. And I'm not doing a lot of reflection of my experience as been autistic. So, I think you mentioned this in the DMs of like, it feels kind of like a vulnerable thing to put out there. And yeah, I mean, I guess that will be interesting of depending on, like, for example, when I say that there's moments I grieve my autism, I imagine that some people will really… I think, for some people to give them permission, I think for some people that will make it sound like I'm not neurodivergent affirming. And so, I think that would be a hard like, if my experience becomes a pain point in the autistic community, I think that will be harder because I'm talking about my experience versus myself as an expert. And I think that's muddy, right? Because sometimes I am bringing in research, and I'm talking from an expertise, sometimes I'm talking from my experience, and we're going to get feedback on all of that. And I think that's going to feel really vulnerable. And I will probably not read a lot of the comments for that reason, or like, ask you, or like my VA to kind of filter the comments because those things I know can kind of hijack my nervous system when there's a wave of stuff around that. PATRICK CASALE: Yeah, for sure. Well- DR. MEGAN NEFF: So, excitement and vulnerability. PATRICK CASALE: Yeah, it sounds like we're in the right place, then. Excitement and vulnerability. So, hopefully, when we circle back after this episode is released we have more to say about that. But I agree, 100%. And I've got your back in that. And I know that we can rely on the people that we hire, and help support our businesses, help with stuff like that as well. So, yeah, I'm excited and I'm nervous and now all the things, so… DR. MEGAN NEFF: What's our awkward goodbye tagline? We like had a tagline once upon a time, a place where we, like, are okay with awkward goodbyes. PATRICK CASALE: Yeah, I think it was just like, we'll see you next week. Bye. DR. MEGAN NEFF: I love the directness of that. PATRICK CASALE: Yep, so everyone that's listening to the Divergent Conversations Podcast on all major platforms out every single Friday. We'll see you next week. Goodbye.
Being an Autistic human often pairs with a complex relationship with emotions. Just the question, "How do you feel," can feel so uncomfortable and spark anxiety, panic, and avoidance, often resulting in pre-planned responses or an answer that makes you think, "What the hell am I saying right now?" In her initial session with a new therapist, Megan Anna, an Autistic psychologist, unintentionally exposed her genuine feelings about emotions, inadvertently confessing, "I hate emotions." In this episode, you'll hear the personal experiences and realizations of both Patrick and Megan Anna around emotions, communication, and navigating relationships. If you or someone you know struggles with expressing emotions or feeling understood and connected to others, then this episode is for you. Top 3 reasons to listen to the entire episode: Understand how Autistic people may display emotions differently and the challenges we face in navigating and expressing our emotions. Identify signs of sensory overload, what can trigger it, and some methods to help self-soothe and regulate. Learn how and which tools and technologies to use to improve and aid in communication By gaining a deeper understanding of Autistic emotions, we gain the potential for greater self-awareness which can empower us to embrace our authentic selves, and foster meaningful connections.
Finding a neurodivergent affirmative therapist is important for individuals who are Autistic, have ADHD, or have another diagnosis. However, it isn't always easy to connect with a therapist who is willing to explore their client's special interests, even though it can help them feel more comfortable and relaxed during therapy sessions. There are some therapists out there who shy away from or just don't understand neurodivergent minds and thinking, despite what claims may be on their profiles, which can make finding the right therapist a challenge. But neurodivergent affirmative therapists are out there. You just need to know what to look for. If you are looking for a neurodivergent affirmative therapist and aren't sure where to start, then this episode is for you. Top 3 reasons to listen to the entire episode: Learn how and where to find a neurodivergent affirmative therapist who can support your unique needs. Identify what to look for and expect in a neurodivergent affirmative therapist and what therapy modalities are generally most helpful for autistic and ADHD individuals. Identify some common misconceptions about what kind of therapy works best for neurodivergent folks, as well as hear about Megan and Patrick's personal experiences. Remember, finding a neurodivergent affirmative therapist can be a challenge, but with the right tools and information, it's absolutely achievable. Keep advocating for yourself, and know that healing and overcoming shame and stigma related to seeking therapy is a testament to your strength and resilience. Additional Resources: Check out these resources on Megan's website: neurodivergentinsights.com/resources Transcript PATRICK CASALE: Hey everyone, you're listening to another episode of the Divergent Conversations Podcast. I'm one of your cohosts, Patrick Casale, joined today by my other cohost… MEGAN NEFF: Dr. Neff. PATRICK CASALE: And today we're going to talk about finding a neurodivergent affirmative therapist and how complicated that can be, questions to ask, things to avoid, resources, etc. So, a really cold topic segwaying off of our Megan and my conversations around our own diagnosis history, and stories, and some of the personal pathways into kind of finding therapy for ourselves and how challenging that has been. And I think it's been a rough road. But I think we both kind of have got that sorted out now. But I think it's taken a long time, and a lot of trial and error, and a lot of misdiagnoses, missed opportunities, and unfortunately, sometimes some trauma involved as well. MEGAN NEFF: Yeah, that's a good summary of it. I'm curious because I know you really like your current therapist, how did you find her? Were you specifically looking for a neurodivergent affirming therapist or was it coincidental? PATRICK CASALE: It was coincidental because when I was looking I had not even gotten my results back from the testing that I had done yet. MEGAN NEFF: Okay. PATRICK CASALE: So, I was looking very specifically for someone who could support me with certain things like feeling like I'm never doing enough, I'm being lazy, I'm being unproductive. MEGAN NEFF: All these ADHD things. PATRICK CASALE: Yeah, all the ADHD things really of like, and I also wanted to finally try hard to absorb and take pride in some of my accomplishment instead of just moving to the next thing. Simultaneously, was doing testing to set… Ooh, words, to figure out if I was autistic, if it was ADHD, if I was missing something, and got my results after I had scheduled an intake with her. So, I was really actually very anxious about that first interaction because I had heard some horror stories from some friends who had recently been diagnosed as autistic. They had told their therapists and their therapists, like, kind of in the middle of conversation were just like, "Yeah, I don't feel competent enough to help you and I'm going to refer you out." MEGAN NEFF: Yeah, yeah. I see and hear about that a lot. Like, sorry, can't touch that. PATRICK CASALE: Yep. MEGAN NEFF: Refer you to a specialist. Yeah, totally. PATRICK CASALE: Yeah. And I think the problem, you know, is who are the specialists? MEGAN NEFF: Right? PATRICK CASALE: And [CROSSTALK 00:02:49]. MEGAN NEFF: They're working with kids. PATRICK CASALE: Yeah, they're working with kiddos. And a lot of the times they're also practicing from an ABA model. And I think that just like any other marginalized group, when someone says, like, we're anti-racist, or we are pro-BLM, or we are like, supporters of the LGBTQ community, it's very easy to just say that and not have its meaning- MEGAN NEFF: Oh, my gosh. PATRICK CASALE: …or the [INDISCERNIBLE 00:03:15], or the ongoing consultation. So, I think it's very easy to get caught in between the like, finding the person who knows a little bit about neurodiversity, but like really isn't a specialist, but like, at least is open to working with people. And I think that's where a lot of people end up because we have so few resources out there, at least, in my opinion, in western North Carolina, for sure. MEGAN NEFF: Yeah, yeah. And like, I hope this is encouraging, this probably isn't a super popular opinion, but I am less, and part, probably because of my experience with my previous therapist, but I'm less convinced the person has to be a specialist in neurodiversity and way more about their attitude, and their energy, and their ability to be curious, and their ability to be relational, and ability to be interpersonal. Like, if you find someone who is curious with you, and will engage in the interpersonal process of like, what's happening here? Can we understand that? Do we have this like psychic strength to tolerate looking at that? Then I think you're in good hands. So, for me, often it's less about what trainings have they done? What do they know? And more about who they are as a human and are they open to being curious about this with someone? PATRICK CASALE: Yeah, I agree 100%. And I think that, you know, for any therapeutic relationship that's really crucial much more so than like trainings, or certifications, or letters behind someone's name. MEGAN NEFF: Yeah. PATRICK CASALE: And, you know, we still see a lot of therapists who say like, I specialize in ASD, or I specialize in [CROSSTALK 00:05:08], or whatever the case may be and you're like, "Well, I'm not going to refer to this person probably, so I'm checking that one off the list." So, I think you're right, though, I mean, the curiosity piece and the ability to just really be open and to even be learning as they're going. You know, a lot of therapists, well, I think all therapists should be doing continuous lifelong learning, but the ability to do so with a client who they may be unfamiliar with, or they don't have much background in working with, I think that's really important as well. And that goes a long way to kind of build that trust and rapport. MEGAN NEFF: Yeah, yeah, absolutely, absolutely. PATRICK CASALE: And, you know, I think the horror stories we hear a lot of like the, "I told my therapist this and they referred me out." And I used to experience that a lot when I only worked with male-identifying clients who were struggling with addiction, a lot of them would come to me and say, like, "I talked about my drug usage or my, you know, lack of sobriety and they stopped to listen." MEGAN NEFF: Yeah, that's a really common refer out, yep, yep. PATRICK CASALE: Yep, like middle-of-conversation stuff. Like, someone's saying, like, "Hey, I relapsed and I went back to using amphetamine." And then the therapist saying like, "Whoa, all right, this isn't for me, I'm going to refer you out." But I've always… MEGAN NEFF: No shaming. PATRICK CASALE: It is. MEGAN NEFF: Can you imagine disclosing that and someone be like, "Oh, no, okay, I can't handle you." PATRICK CASALE: Right and like, what do you expect to be happening in the middle of that therapeutic conversation? Like, you can't wait until the end of the session to have that conversation about referrals? MEGAN NEFF: Right, or even to take an interpersonal approach of like, I'm hearing this and I care deeply about you, and here are some of the things coming up for me around this of this isn't my background, and I'm wondering am I the best person to support you through this? And then, like to process it with the person versus just not, "Sorry, no." And I mean, talk about like an attachment injury. There's just so much about that, that makes me cringe. PATRICK CASALE: I thought it was mind-boggling. And I thought, you know, this person was just… this was being embellished, then I met the therapist, and they like, confirmed everything, they're like, "Yeah, I said that that's how this went, that's how I referred them to you." And I was like, "What the fuck?" Like, you can't just… I think therapists are so often unable to handle, like, healthy confrontation and feedback process in a relationship. So, we avoid it and then it's like, I'm going to cover my ass, so I think the best scenario is like refer out, refer out, refer out. MEGAN NEFF: Yeah, there's a lot of cover your ass, and that thing, again, what happens to the person when they feel like a liability? I've just disclosed something really vulnerable and I'm now a liability. Like, Martin Buber is a philosopher, I'm a big fan of, and he talks about the I thou, I it encounter of like I thou is seeing the sacredness of the other I it, it's that kind of objectifying. Like, in that moment of I can't handle you, I'm referring you out, like that became an I it moment. And in a relationship where they're supposed to be a lot of I thou encounter, it's so wounding. PATRICK CASALE: It's really wounding and you know, I think so often, right, if we're talking about people who are ashamed of their diagnosis or their presenting concerns, and they've been stigmatized and discriminated against, and you come into therapy, a place where like, you've finally been able to pick up the phone or email and finally made this appointment, and then that is the response, the odds of you seeking out therapeutic support ever again in your life drastically reduces. MEGAN NEFF: Yeah, and this is something I tell like trainees when I'm working with, like psychologists in training or therapist in training is, because there's so much pressure when you're in training to like do everything perfectly, and also always remind them like, if they have a positive encounter with you, that is incredible because it means that they can trust the process of therapy, they're more likely to go back when they need it. Like, make that your goal, have a positive encounter with this other human, and it's not about like doing all the techniques perfectly or making sure their depression symptoms are all the way reduced. It's, can you have a human-to-humor, wow, words, human-to-human of authentic, meaningful encounter where they feel like this is something that they want to return to. PATRICK CASALE: Absolutely. I think that's a testament to doing really wonderful work and that's where the healing and you know, that takes place too, and someone who then becomes much more invested, and then the shamefulness and the stigmatization kind of dissipates. And it's like, "Okay, that wasn't so bad. Like, I can go and talk about this." And I will say, you know, you mentioned my own therapeutic experience, and that intake was very anxiety provoking for me because I had just gotten these diagnoses, I was still processing. And I was like, really excited to see this person. I've been waiting a long time, she had quite a significant waitlist, and I was like, "I'm just going to wait it out, and you know, I want to see this person." And I would have really, probably been pretty devastated had the response been something different. But what happened was, I was just like, "Listen, I want to be really transparent with you. I did just do testing for autism and ADHD. And you know, I did get or receive a diagnosis for both autism and ADHD. And I just want to name that because I'm fearful that you're going to tell me that we can't work together." And she was like, "Oh, yeah, my son's autistic, so you're probably in a good spot." And I was like, "Oh, well, this feels like…" MEGAN NEFF: That's amazing. PATRICK CASALE: Yeah, it felt like very much aligned with what I've been working towards. And a couple of good friends in town had given me her name. And I think they probably knew I was autistic. So, I think they did so with, like, the best of intentions in terms of referrals. So, I've been really fortunate. And I know that and I don't take that for granted at all. She actually listens to our podcast and follows you- MEGAN NEFF: Oh, does she? PATRICK CASALE: …on Instagram. So, she's excited for all this stuff to come out. MEGAN NEFF: Yeah- PATRICK CASALE: Like, I can't [CROSSTALK 00:11:46]- MEGAN NEFF: How's that? Like, do you all process that as client therapy of like, and then you see this other side of me because that's really interesting. PATRICK CASALE: I think that dual relationships, I'm okay with dual relationships [CROSSTALK 00:12:04]. MEGAN NEFF: I wonder if that's an artistic thing because I am too. And I kept pushing my… My therapist and I, we wrapped working together, but we worked together for like four and a half years. And I kept pushing for more dual relationships. And he held the frame of like, and I mean, he's psychoanalytic, it's a little bit more, but I think it's kind of an autistic thing, and may be related to the whole like hierarchy of, we're two humans having a really meaningful encounter, why is it so contained? But I actually understand it therapeutically, also why it's important, but sorry, I interrupted, talk more about your [CROSSTALK 00:12:40]- PATRICK CASALE: I think that's important to name because I think that's true because now I'm thinking about all the autistic therapists that I know or that I employ who also are absolutely okay with having dual relationships in their lives. And I think it is like the recognition that, yes, this setting is for this, but like, we are also humans who live in a community together and like, there's going to be overlap and like there's going to be potential interaction in other areas of our lives. So, I actually think it's great because that's actually a good segue into what to look for in a therapist who's ND affirming because someone who will willingly explore your special interests, I think that's huge, I think that's so so important for someone to like, not just shrug it off, not just try to, like, deflect, or to, you know, kind of transition to a different topic. But if a therapist is recognizing like, "Oh, this autistic client is really into A, B, and C. Like, let's just go with it and see where that goes." Because that's another way to drop that guard down quite a bit. MEGAN NEFF: Oh, absolutely. Typically, when I'm working with therapists a lot of it's around, like, helping them refine their assessment skills. And a question I'll often ask is, do you feel like you contact them when they start talking about an interest? And by contact, I mean, like, you see them, like, you feel them in the room for the first time. And when therapists are like, yes, to me that's like, okay, that's a green flag that we're looking at autism here, is you feel like you're contacting the person for the first time when they start talking about their special interest. Before that it's you're asking all those social-based questions like, tell me about your family, tell me about your friends, and you're getting like one-word answers or like, it just feels really, you don't feel like there's a person there probably because most of us are in free state when we get asked social-based questions. And so, if you want to get access to the person you're absolutely doing that through special interests versus those social-based questions, I think that's a huge part of autistic affirming therapy. PATRICK CASALE: Yeah, I agree. And I think that makes a huge difference. It just feels more real, feels more authentic. You know, you can really drop in then and you can see the personality start to come out too and excitability as well. MEGAN NEFF: Emotion, which is good for therapy. PATRICK CASALE: Emotion, right, yes. MEGAN NEFF: Like, I just got you… did you see how my effect just like went way up when I started talking about like, especially… because talking about autism and special interests in therapy is your special interest. PATRICK CASALE: Is your special interest. MEGAN NEFF: Yeah. PATRICK CASALE: One of your special interests. MEGAN NEFF: Yeah, one of my special interests, and my energy just went way up? PATRICK CASALE: Yeah, I mean, I think it's so important to follow that. And so often, I think I've been in so many therapeutic relationships as the client where, you know, I am just either going to be like robotic sounding board, rehearsed answers, like, know what to say, versus like, the ability to dig deeper and actually go into processing trauma or lived experience because we're connecting on the same wavelength because you're allowing for me to diverge, where my brain is going, instead of trying to circle back constantly and like, "So, let's talk about this." It's like, "No, I don't want to talk about that right now." MEGAN NEFF: And to me, like that would be a... if we're talking about kind of red flags of like ND affirming therapists versus not, I think that would be a red flag of someone who's maybe not a great fit. If every time you start talking about something you're excited about, like, the therapist kind of does that with you for a couple of minutes, but then circles you back to, "Okay, and the point of this is… so but tell me about, like, how that makes you feel or tell me about…" Like, trying to redirect it back to the neurotypical- PATRICK CASALE: And what happens to the typical autistic person when that happens to them? Like, what is your [CROSSTALK 00:16:43]. MEGAN NEFF: What happened? PATRICK CASALE: Like, what's the instinct or like the reaction, typically, when someone like does that to someone? MEGAN NEFF: Well, I'll share my experience. So, I was working with a spiritual director, which is different than therapy, but kind of like, there's a similar back and forth aspect to it. And this was back when I was in the… I no longer identify as religious, this was back a few years. But I was explaining, so Moltmann is this theologian I love and I was really into Moltmann, and he was helping me as a… he's very philosophical, so he was helping me, like, think through a lot of my psychic stuff, as well as my, like, relationship to the sacred. And I was getting really into Moltmann and explaining it because I was reading this, like, 1000-page book at the time. And then my spiritual director was like, "Yes, but when you talk about that, where do you feel in your body?" And she's bringing it back to like analytic, and I was like, "I was just telling you how I felt about it by like unpacking who Moltmann is, the ideas I'm engaging with. Like, I literally was just telling you how I feel about it." But then she was bringing it back to allistic speech of emotion words, body words. So, I froze in that state. And I like shut down. And I think I went back to like that pre-scripted conversation. It was a requirement of a program I was in when I did it. So, I think all the other sessions after that I would come up with this is what I'm going to say, I just kind of bared through them. I would brace for it because it felt very intrusive attending these visits. And I felt very inadequate of like, why are these questions hard for me to answer? I didn't know I was autistic at the time. So, like, why is this so hard for me to answer? Every time I go academic she tried to bring me back. But that's how I disclose my inner world to people is through ideas. And I think she saw that as a defense. And so, was trying to bring me back into emotion language, which is a language that I'm not… That's not how I share my inner world with people. I'm not like, this is how I feel about it. And that's just not my language. That's what happened to me. I froze, and got defensive, and scripted out how I'd make it through the rest of sessions. PATRICK CASALE: Yep and I think that also, in my opinion, creates some shamefulness internally of like, at least for me, what happens is I shut down, like you just kind of mentioned, and then I started thinking like, "Why the fuck can't I access this? Like, why can't I speak like this or reference this?" And then I get really in my head. And that's what's been nice about my current therapist is she has said things like that before where she's like, "You know, do you want to drop in today or do you want to do this?" I'm like [CROSSTALK 00:19:49]. MEGAN NEFF: Oh, I like that. She's getting consent. PATRICK CASALE: Yeah, she always asks and I'm always like, "No, I don't want to do that." And she reads my facial expressions really well. And she's like, "You're not here for this today, are you?" I'm like, "No, I don't want to do that. So, can we fucking talk about what I want to talk about?" And you know, sometimes that is definitely a defense mechanism too- MEGAN NEFF: Totally, yeah. PATRICK CASALE: …but at the same time, the how does it make you feel? Or where do you feel that in your body? Like, all the typical therapeutic language, I just can't tolerate it. And it just makes me, I've already checked out then. Like, I'm just going to go into that faking state of just like yeah, and head nodding, and short answers, and… MEGAN NEFF: Does it feel intrusive to you? To me, it feels so intrusive for someone to ask like where in your body is that or even how you're feeling, it feels intrusive. PATRICK CASALE: I think it does feel intrusive and I think it's because… And this is, again, just my perspective is like, when you're being asked that, it's like saying the other person doesn't really see you and doesn't really understand your inner world. And that just makes me feel like we're really not connecting. And I'm kind of going to check out. I just don't want to have the conversation anymore. MEGAN NEFF: Yeah, yes. I think the reason that I worked with my last therapist I worked with was, well, first, it was the first male therapist I worked with, and I think that worked well for me because, like, all the emotion feely stuff doesn't work for me. And a lot of, gosh, this is so gendered and binary, but I haven't been to any genderqueer therapist before. But the women I worked with who are therapists were very like feely emotion. And I needed someone who's more analytic, intellectual, which I found more easily in a male therapist than I did in the female therapist that I tried. Again, there's going to be a lot of variance there. But for me, I realized working with a male therapist ended up working a lot better. And there's plenty of female therapists who are also not feely warm, but I think, okay, I'm going to stop. I'm like feeling myself digging myself into a hole around creating gender stereotypes and I'm going to stop trying to dig out of that. Okay, where, oh, this is where I was going with that [INDISCERNIBLE 00:22:07] trail. After the intake, in our first session we had, he didn't start with how are you feeling? He started with what's on your mind. And I found myself opening up, which was not normal for me for therapy experiences. And I realized that after I was like, that made such a difference, that simple question, what's on your mind? Versus how are you today? Or how was your week? That felt invitational versus intrusive. And so, I think that's one of the reasons we worked together well for so long was, and again, we didn't know, I didn't know I was autistic. He obviously didn't know. But yeah, I found that a much nicer way of opening a session. PATRICK CASALE: Yeah, I like that, what's on your mind? I think when you ask the like, how's it going today? Or how's your week? Or how are you feeling? My instinct is always to be like, "Good, I'm fine. You know, like, nothing's wrong." And then I feel myself as we're going through a therapy session to be like, "Oh, this is so wrong, like everything is happening to me right now." But it's instant instinct to just immediately answer with a short answer and just move on to the next question. And I think that, again, when we're talking about green versus red flags in therapy is really the approach has to really be important. And so, talking about green flags, like, let's highlight the good stuff before we [CROSSTALK 00:23:41]- MEGAN NEFF: Yeah, we've kind of been down on therapists today. PATRICK CASALE: We're both therapists and we're both shit-talking therapists. MEGAN NEFF: I know and there's a lot of amazing therapists out there. Like, there's therapists who come and pay me like a ridiculous amount an hour to consult with me because of one client they have. And like, there are therapists out there who, like, care so much and are doing the work. So, yeah, I was even noticing that earlier. I was like, "Oh, I feel kind of bad." And I think on social media right now, especially, in autistic world, there's a lot of negative talk around therapists. So, I was even feeling that of like, "Gosh, this is all true and I don't want to be contributing to that narrative of like, all therapists are shit therapists and don't know how to work with us." Because there's a lot do, yeah. PATRICK CASALE: Yeah, there are. I think all of these conversations are not binary and like these are not black-and-white conversations, and I want to highlight both sides of the coin because there are so many bad experiences whether you're autistic or not autistic. I mean, there's a lot of bad experiences, but there are a lot of wonderfully positive, transformative, empowering, affirming experiences too. And there are a lot of wonderful therapists who are doing the work, who are curious, who are learning as they go, as we all are, and who are willing to show up and have really difficult conversations, but also be as empathetic and present as possible. MEGAN NEFF: Absolutely, absolutely. Yeah, so let's talk about green flags. What are some that come to your mind when you think about, like, how you steer people or what they should look for? Whether it's like they're doing a search on Psychology Today or they're on the therapist's webpage? What do you think they should be looking for? PATRICK CASALE: I think, again, language is important. I think that, you know, I want to see what people are using in terms of identity-based language. I want to see, like I mentioned before, are we still using ASD? Are we still using the term Asperger's? Are we really committed to the ABA philosophy and intervention set? I think that I also really want to know about, I personally like to know about therapist's identities as well. So, I want disclosure, like, I really value that. And I think that is really helpful for any sort of affirmative care, but I think those are some green flags that I look for. How about you? MEGAN NEFF: Yeah, I love that, yeah, someone who's taking their time to highlight this is how I'm socially positioned in the world is obviously thinking about identity in a thoughtful way. So, I think that is a significant one. Yes, agree about identity language. And I love that the word neurodivergent, neurodiversity is becoming more widely used, but I do see that sometimes sprinkled on websites, but then it's like, interacting with the content or books, I've read books where they use neurodiversity, but then it feels like they've just like substituted ASD for neurodiversity or neurodivergent. So, I also, like, I think, like paying attention to the energy you feel when you're reading about a therapist webpage. Again, I'm very interpersonal. And so, I really trust, like, what is happening to you, when you're on this person's site, energetically, in your body, what are you feeling? But paying attention to just how you feel when you're reading about this person and interacting with what they're putting out in the world? PATRICK CASALE: I want to know, also, like, therapists takes on self-diagnosis. I think that's- MEGAN NEFF: Oh, yeah, yeah. PATRICK CASALE: You know, I think that it's definitely a pretty controversial topic in that world. But I always want to know, what do you think about self-diagnosis? MEGAN NEFF: That's a great question, yeah. PATRICK CASALE: Yeah, because I recognize my privilege. Like, I'm able to go and get testing done and, you know, seek out therapy that I want to seek out instead of just what's in front of me, and so I want to know about that. I want to know about their, you know, you were mentioning Karissa before, and her web page, and their resources that they have on there, and all the frequently asked questions, and ways that they can help guide through. I want to know about thoughts on stemming during sessions. And like if they're able to have any sort of sensory soothing tools? How are we going to set up? Like, how are we feeling about eye contact, even like, in terms of virtual sessions, or in-person sessions, but virtual for sure? Like, my therapist always encourages me and she'll say it like when she can tell I'm really struggling with eye contact in general. She's like, "Please feel free to, like, look around the room and like, do whatever you need to do, we do you. I'm right here, but you don't have to look at me at all." And at first that made me feel like really uncomfortable because I'm like, looking like this and like [CROSSTALK 00:29:15]. I'm like, I could sense the discomfort, but in reality, like, she's just like, "Okay, it's fine. Like, do whatever you need to do." And I think that helps really feel really affirming as well. MEGAN NEFF: Yeah, yeah. That whole, like, are the neurotypical scripts kind of being followed in a way where it's assumed like, okay, this is how we do it. We sit down, we look at each other, we talk. Yeah, absolutely. So, for the last two years since COVID started, I've been doing phone therapy with my therapists, and I'll go out, and walk and I found I really liked that because I could get into my emotions a little bit easier if I was walking. And I would say about half the people I work with do phone therapy, and a lot of them walk during it because there's something that's regulating about walking, there's none of the eye contact. So, I think even asking about, like, what's your frame of therapy, and I realize it's really different around the world. In Oregon, all medical providers who are wearing masks and mask therapy it's just so hard, important for health reasons and so hard for therapeutic reasons that a lot of therapists in Oregon are still doing teletherapy. I don't know if it's what it's like there. PATRICK CASALE: I'd say the southeast stopped caring a long time ago. MEGAN NEFF: Sure. PATRICK CASALE: But thankfully, Ashville- MEGAN NEFF: Did they ever care? PATRICK CASALE: …is a bit more progressive than most of the southeast. But we're doing a hybrid mix. Our practice is predominantly telehealth. So, like, telehealth, for the most part. I've always done telehealth therapy with my therapist. I've never met her in person. And she'll encourage that too. Like, if she can tell that I'm starting to get dysregulated she's like, "Get up and walk around your kitchen." Or like, "You know, go walk around the house and come back." Or, "Do what you need to do to regulate yourself." And I really appreciate the permission to do that instead of feeling like shameful about it or like, are you going to tell me to sit down, or that I'm being distracting? Or like any of the things that I've heard throughout most of my life? MEGAN NEFF: Yeah, yeah, yeah. And I think that can be really healing in a therapy is when the therapist is helping you, like, think through what do you actually need in this moment? Especially, for maskers, we're so used to suppressing our needs in any given moment that A, it's hard for us to access what we actually need, let alone to do that in front of another human. So, I think therapy can be a really powerful practice ground of [INDISCERNIBLE 00:31:52] with another human. I have some sort of sensory or regulation needed in this moment. Can I practice, A, checking and figuring out what the hell it is I need and B, actually doing that in front of another human? PATRICK CASALE: Yeah, yeah, I think that's like the epitome of safety, is if you can feel comfortable enough to unmask and really have someone else also acknowledge, and see what, and understand what you need in the moment. And without that, that shame or that quick desire to like, immediately flip that switch and be like, "No, everything's fine. Like, I'm okay." Because we do that so often in our day-to-day where we have to act, or present a certain way, or show up a certain way. And I think therapy can be a really beautiful place to kind of just let that shit go and just like, really show your true self. And I think that is just so hard to do on a consistent basis. MEGAN NEFF: Absolutely, absolutely. Especially, when you're autistic and have been actively working to not show your true self for years and years, yeah. PATRICK CASALE: Yeah, it's so deeply rooted, right? MEGAN NEFF: Oh, go on. PATRICK CASALE: Sorry, I'm just- MEGAN NEFF: No, go ahead. PATRICK CASALE: I was just going to say it's deeply rooted. And, you know, I think having an ND-affirming therapist, that's another part of it, that's another green flag is the acknowledgement of how much energy goes into masking and how challenging it is to really reveal like, what's actually happening beneath the surface. So, I really appreciate that perspective and that ability as well. MEGAN NEFF: Absolutely, absolutely. Okay, so we've talked a bit about like, language and characteristics of the therapist. I'm curious, I get this question a lot, and I've got a few thoughts, but I'm going to put you in the hot seat first. Do you think there's certain therapy modalities that work better for autistic people? PATRICK CASALE: Yeah, I do. I will say what I think doesn't work. But this is, again, I'm always going to defer to you when we're talking anything clinical because that's your jam. I will always admit that I have not done the research and the work that you have done. And I think for myself and for a lot of autistic folks EMDR, brain spotting, that stuff is really challenging. And I also think CBT is also really really hard, the concrete, like, regimented this is what you do, this is what you do, this is what you do, I think DBT can be supportive. I love IFS, I love parts work. MEGAN NEFF: Yeah, same. PATRICK CASALE: I think that is so fucking powerful and you can really tap into those special interests with parts work. I had such a hard time accessing it like, visually if you were like, "Imagine this boardroom and your parts are there, and they're like communicating." I'm like, "What? No, like, that does not work." But my therapist knows I love Lord of the Rings, so she's like, "All right, so imagine we're at that scene in the fellowship of the [CROSSTALK 00:35:07]- MEGAN NEFF: That's amazing. PATRICK CASALE: … where everybody is coming together, and the dwarves, and the Elves, and the wizards, and the hobbits, and who's doing what?" And I'm like, at first, I felt so fucking nerdy. And I was like, "Oh, this is making me so uncomfortable." But I've really been able to access so many different things when you can drop into that world, and to be able to use your special interests in a way where you can feel more connected to emotions that are happening beneath the surface. I think that has been unbelievably life-changing for me. MEGAN NEFF: Yeah, yeah. I cannot agree more. I love IFS. I love it for autistic people. I will say, I don't know if you're seeing this out on the East Coast, have you heard of plural systems? PATRICK CASALE: Mm-mm (negative). MEGAN NEFF: It's kind of, oh, gosh, why did I say that? Now I have to try and explain it. So, I would say it's on the DID spectrum, dissociative identity spectrum, when in learning about plural systems what I find is a lot of people who identify as having a plural system, they have more conscious contact with the parts, but it's different than parts work. So, that's the one thing with IFS, I'm like, I love IFS, but then if someone comes in, and they're experiencing, like, they're identified as a we, so people with plural systems often will identify as being plural. And from a affirming lens of like, this isn't something I'm trying to fix about myself, I'm trying to figure out how to integrate these parts. But that's the one thing that I think can lead to some confusion is when you're doing IFS work, but if you're working with a plural system, what the therapist might be conceptualizing and what the person's bringing in, there's going to be a little bit more to navigate there. And I've seen some CEs come out for working with plural systems. It's so new, and it's nothing that's in the DSM yet. Okay, that was a… I'm like rabbit trailing today. PATRICK CASALE: [INDISCERNIBLE 00:37:15] Megan and her clinical work, that's right up the alley, so thank you for that. MEGAN NEFF: But yeah, I'm curious what you said about EMDR. I have wondered about that. I've heard some autistic people talk about that being helpful, but it makes sense to me because it's such an isolated memory you're working with, and our brains are so divergent. So, that actually intuitively makes sense to me. PATRICK CASALE: Almost flooding that happens too with the EMDR. There's a lot of flooding and when you're bringing back that very specific memory, and I've always found that and, you know, this is just anecdotal. So, this is really not evidence or research-based whatsoever. But what I've heard so often is that it's just so hard with the eye movement and constantly like, flooding yourself with memory, and then being able to access. And I think that for myself I shut down immediately. I've tried it a couple of times, but I've also heard about ND-affirming EMDR starting to come to the surface too, but I have not participated in it. I kind of got turned off early on in my life. MEGAN NEFF: Yeah, I've never tried it, I'd be curious. I think I probably would not like the flooding aspect of it. It's so experiential. I think that would be hard for me. PATRICK CASALE: That's the hardest thing I think is the experiential piece. And that's what was hard for me about brain spotting too, I don't know if you've done that, but like- MEGAN NEFF: I haven't. PATRICK CASALE: … I did the brain spotting training and I could not access like, you know, you're doing the practicums, and they're moving, you know, the thing back and forth, find the brain spot, okay? And then like, what are you experiencing? What are you accessing? I'm just like, numb, flat, dissociated, nothing. And when that happens to me in therapy I get so frustrated with myself. MEGAN NEFF: I mean, just you hearing that it makes me think of all the time someone's asked me how I'm feeling and I can't answer like, and all of the situations I've been in where like I'm in a situation and someone's trying to evoke an emotion, especially, growing up religious, I was in that situation a lot. But then also in therapy training, and being like, I feel like I'm supposed to be feeling something right now and I'm not and then I get in my head about that. Yeah, yeah. So, I think that was- PATRICK CASALE: I just [INDISCERNIBLE 00:39:29] I was like, "I want to get through this practicum." Be like, "Yeah, I'm feeling this thing, and like can we fucking move on? This is awful." MEGAN NEFF: Totally, totally. PATRICK CASALE: How about you? Like, what do you think works and what doesn't? So, do you feel like IFS is probably up there? MEGAN NEFF Yeah, I really like IFS for… especially, and I think, for multiple neurodivergent people, like I'll talk a lot about like my ADHD part and my autistic part. And so, I love the language of it. I think it destigmatizes and de-shames because it creates a little bit of distance from parts. So, like, this part of me wants this, this part of me wants this. So, also, the ability to bring in more complex thinking, which is harder for a lot of us. We are more prone to that rigid thinking. So, I think that provides a concrete way and a visual way, which works really well for the autistic brain to do some complex, nuanced thinking. So, yeah, I love IFS. Other ones, I do like act for a lot of autistic people, not for everyone, but a lot of people. I responded well to, like, learning act as a therapist, and I use a lot of that sort of mindfulness in my day. It's different than CBT in that you're not trying to change the thoughts, you're changing your relationship to the thoughts. So, I think it honors the complexity and the existential aspect of a lot of our thoughts while helping you to distance from them enough that you can kind of hold on to yourself and ground yourself. So, that's what I typically also think can work well. And then, I really like interpersonal stuff because we're so often trying to figure out what the other person's thinking, that if you can do that in the room therapeutically, I think it can be really healing. It takes quite a bit of, like, ego strength or psychic strength to be able to do that. So, maybe doing some other work before you do that. But interpersonal therapy or I really like relational psychoanalysis, traditional psychoanalysis. I'm not sure how I feel about that. For autistic people, it might be too much of a blank slate of the therapist. Relational psychoanalysis is the third wave and the assumption is the therapist and you are always co-creating the reality, and that the therapist is not off the hook. They are part of the dynamic as well. But we get to talk about it, we get to understand it, we get to look at it together with curiosity. I think that sort of living lab of relationship, can we understand what's happening between the two of us can be so so healing because so many of us have relational trauma and confusion coming into therapy. So, I would say those four relational interpersonal act in IFS and DBT, I think, has some good strategies as well. But those would probably be my favorite ones for us. PATRICK CASALE: I like the relational psychoanalysis. I've actually never heard of that third wave. So, that's pretty cool. I couldn't deal with the blank slate psychoanalysis, like, that was a little challenging for me to be like what the fuck is happening right now? MEGAN NEFF: Yeah, I don't think it would cultivate enough psychological safety in the room to be able to do work because, partly, as a high masker we're always trying to tune to the other to figure out what does that person want me to be? So, with a blank slate, it's like we're flailing. So, if you could talk about it, though, so like my therapist who was relational psychoanalytic, he did hold kind of a blank slate in the beginning because he could tell how badly I was trying to figure out who he was, so I could figure out who to be. But we were able to talk about it, we were able to talk about what was happening around my, like, desire to please him or my desire to adapt to like, you know, be the ideal patient. So, I think that if the blank slate is there, but it can be talked about, I think it's okay, but if it can't be talked about, if it's like, "Oh, well, what is it bringing up for you that you can't read me?" And if it's always reflected back to… PATRICK CASALE: Yeah, that would surely ensure that I would never come back to that person. I would be like, "Yep, all right, guess I'm done today. In 43 minutes, I'm getting the hell out of here and I'm not coming back, so…" MEGAN NEFF: Yeah. PATRICK CASALE: What are your thoughts on CBT for autistic folks? MEGAN NEFF: Yeah, I agree with you. I think it's so linear and logical. And our brains tend to be so divergent in context, like high context in the sense that, well, that thought in this context made sense, but it's pulling thoughts out of context to work with them, which just doesn't work for most of us. It does work for some though. And I think, like, I've worked with some people who are autistic and not autistic, ADHD, who are maybe, like, engineers or coming from a really linear logical background who actually really like it. So, I wouldn't do a blanket slate statement of it's always bad. I do think, in general, it doesn't work well. That said, there's some things I pull from CBT like having a list of common cognitive distortions and just being able to identify like, oh, my brain's doing that right now. Now, I'm going to go in and try to change my thought. But like I'm just mindfully noticing my all-or-nothing thinking filters on right now. I think that sort of thing can actually be really helpful. But again, that's taking a CBT idea and then using it mindfully versus let's try and change your thought you're having right now, which I just think is really invalidating for a lot of us. PATRICK CASALE: I'm glad that you named that about the folks who are maybe autistic, but not autistic, ADHD, and how if you do find yourself in like, engineering, or software design, or something that is really cognitive heavy, where your brain is just thinking very, very, very rigidly and in linearly, and thinking out these patterns, I think CBT probably makes a lot of sense in that regard. So, I'm really glad you named that. That certainly does not work for me. MEGAN NEFF: Me either. PATRICK CASALE: Also, in general, like thought stopping to me is fucking mind-boggling. Like, just stop having this thought. It's like, that is infuriating to me. But I agree, like, if you can pick out pieces of all of these theories of modalities, I think they can all be applicable and useful. And, again, just want to reiterate to everyone listening that none of this is blanket statement stuff. Like, there's always going to be little pieces that work for you. And you may have had great experiences with some of this stuff. And you may have had horrible experiences with some of this stuff. Ultimately, I think it circles back to what you named initially. And it is the rapport with the therapist. Like, if the rapport is there, you're going to be more willing, probably, to try new techniques, and you're probably going to be more open to them. If the rapport is not there, you're going to shut it down. And I certainly have done that. Like, that person could be the best therapist in the world, but if the connection, and the rapport, and the relationship is non-existent, whatever you're trying to get me to do, or try to do, I am going to not be open-minded to it. I'm probably just going to be like, "Yeah, I'll try it." And again, in my head, I'm never coming back here and I'm done with this, so… MEGAN NEFF: Yeah, yeah, absolutely. I can't remember where I read this or heard it said, but someone talks about how, like, there's more diversity within autism than like, autistic to allistic. I'm not quite capturing what they were saying. But essentially, the idea that, like, autistic people, there's so much diversity and that's partly why someone's like, "What's the best therapy for autistic people?" It's like, well, there's a lot of different kinds of autistic people and what works well for one autistic person might not work well for another. So, I love how you how you said that of, well, it really depends on the person and their context and comes back to that human relationship. Is this someone that you can have an authentic encounter with? PATRICK CASALE: Yeah, and I think for a lot of you listening, and myself included, and I imagine for you, Megan, like, you're going to have multiple therapists throughout your life, probably. You know, you're going to go through these phases and chapters of healing, and learning, and growth, and transformation, and what you preferred, and liked, and enjoyed in the therapy room five years ago is probably very different than today. And the next therapist that you see will probably be very different than the one you're seeing right now. It just happens. And that's really common to have different phases of your mental health journey. So, you know, if you're feeling any sort of way about that, I just want to really validate that you're going to have a lot of people in your life who are probably going to come in and out, and some that are going to stay longer than others. MEGAN NEFF: Yeah, absolutely. Should we do our awkward goodbye. PATRICK CASALE: Well- MEGAN NEFF: I can feel the energy of we're wrapping up. PATRICK CASALE: No, no, no, I'm being kind… I'm like, trying to think about something real, like we've covered a lot of ground, but like, have we talked about what not to look for? Like things where people really pay attention to and kind of acknowledging this is probably not going to be a good fit. I guess it could be everything that is opposite of what we've talked about and what we should look for, which seems pretty easy to state that. But just my thought right now is, those of you who are concerned about, or confused about, or overwhelmed with the process of finding a therapist, there are ND-affirming directories out there, too. MEGAN NEFF: Yeah, I've got several... We'll put them in the show notes, but I've got several on my resource page on my website. And so, if you go to neurodivergentinsights.com, I think /resources and scroll to the middle, I've got like four or five directories. There's even one for the UK, which is awesome. PATRICK CASALE: Yeah, that's awesome. MEGAN NEFF: And they're growing. Like, they're growing daily. And more and more therapists who are neurodivergent are coming out as neurodivergent. So, like, also, I mean, pretty much every neurodivergent therapist right now has a long way list, but there's more of us, and it's easier to find us. PATRICK CASALE: Yeah, that's a great point. I think that for those of you listening, Megan's website has so many great resources and that can be a really helpful way to do that. And if you're not in an urgent crisis, you know, if you find someone who you really want to work with, and they have a waitlist- MEGAN NEFF: Get on. PATRICK CASALE: …I recommend just get on it. You know, you never know how quickly that's going to move and it is worth the wait if you are waiting for someone specifically who really gets it, or who really can help you, or support you through your journey, and validate, and affirm because, otherwise, you're scrolling through Psychology Today, and you don't know who the fuck you're calling most of the time. I mean, it's just like, "I'm going to call the first 20 people I see and then whoever calls me back first is going to be my therapist." And that doesn't always lead to great results for the therapist or for the client. MEGAN NEFF: Yeah, yeah. And one thing, I think autistic people might… I know I would be this way of like, it would feel wrong to be on multiple waitlists because it's a waitlist, I don't know, maybe you're not like that. But so, I like to explicitly tell autistic people, you can be on multiple waitlist, that's actually really normal, and you should be on multiple waitlists. So, if there's a few therapists that you're thinking they might be a good fit for me, it's totally normal to be on multiple waitlists. It's part of why waitlist can go faster because by the time we call someone on the waitlist, maybe they've already found a therapist, often is the case. PATRICK CASALE: And you're not going to hurt the therapist's feelings by being on multiple waitlists, deciding to go with whoever comes available first. That is absolutely okay. And it's totally normal, it happens all the time, the therapist is not going to get their feelings hurt by that, they're just going to move on to the next person on the waitlist. So, I know a lot of the times we can feel some guilt around stuff like that, but totally part of the process. MEGAN NEFF: Yeah, absolutely. PATRICK CASALE: Cool. Well, I hope this was helpful for everyone. And we will continue to have conversations around this because I think this is a very important topic for those of you who are looking for support. And again, lots of resources out there and we'll put those in the show notes so you have easy access to them. And we will plan on seeing you next week. So, we have new episodes coming out all the time on all major platforms and we will see you later, bye.
There can be a lot of stigma around autism and especially being an autistic therapist, which can make it even harder for autistic individuals to step into this career. They may even be told that they can't be empathetic or relate to others in a way that could help their clients, which is just NOT TRUE. If you are autistic and have been hesitating to step into the mental health field because of the stigma around autism, then this episode is for you. Top 3 reasons to listen to the entire episode: Understand how being autistic can make you a better therapist for other neurodivergent clients, often more so than an allistic (not of the autism spectrum) therapist. Identify ways to combat the notion that autistic people can't make good therapists, as well as how to navigate grad school when you are receiving a negative perspective on autism from professors or supervisors. Learn how to structure a private practice to support your needs and create a stable work environment for more longevity in your career as a therapist. When Dr. Megan Neff was asked why they became a therapist, the answer was "because I'm autistic." This episode can help you explore in what ways autism can help you succeed as a therapist, as well as in what ways you might struggle and how to face those times. Check out the resources on Megan's website to learn how you can find a Neurodivergent Affirming Therapist: https://neurodivergentinsights.com/resources Transcript PATRICK CASALE: Hey everyone, you're listening to another episode of Divergent Conversations Podcast. I'm your cohost, Patrick Casale. MEGAN NEFF: And I'm Dr. Neff. PATRICK CASALE: And today we are going to talk about our journey into becoming therapists and maybe what we would be doing if we weren't masking and if we weren't therapists. So, Megan, you wanted to start this topic up, so take it away. MEGAN NEFF: Yeah, yeah, I guess I've got kind of two prongs that have informed my interest in this topic. One, I get this in my DMs and my emails a lot from either students who are going through programs, autistic, ADHD students going through programs, who are interacting with the ableism in the system and just being like, "How did you do this? How do you become a therapist? Do I come out as an autistic therapist?" So, one, just I get a lot of questions around this. And then, the second reason… oh, or people who aren't necessarily in training, but they're thinking about going into training, but they're terrified about the process of becoming an autistic therapist. The second reason is I… So, I did something kind of impulsive, but like, also, I've been thinking about it for a few years. But I don't know if you're like this where you're thinking about something and then you just are like, "Yes." And then you're all in. So, I did that where I applied for a psychoanalytic relational institute that would start next year. And whenever you're applying for things like programs or internships, the classic question is, why did you become a therapist? And I typically start with some, like, beautiful Martin Buber quote. Martin Buber is a Jewish philosopher who is definitely a special interest of mine, who talks a lot about, like, authentic human encounter. But what I found myself saying instead of some Martin Buber quote, for the first time, I said, "I became a therapist, because I'm autistic." And so much of the messaging is we become therapists despite our autism versus, like, because of our autism. So, that just started a train of thought. This last week, I was really curious about around the intersection of how autism informed me becoming a therapist, how it influences, and then for other people as well, who might be interested in entering this profession. That was a very long-winded way of answering your question, Patrick? PATRICK CASALE: I think it's a perfectly Megan Anna way of answering my questions. MEGAN NEFF: It is a very autistic Megan Anna way of answering your question. I like barely remember what your question was at this point. But I think it was something about why the heck are we talking about this today? PATRICK CASALE: And so, you're talking about the DMs you're getting from people who are experiencing ableism in their program, how the hell did you get to this? When do I start? Like, how do I come out and openly disclose? Right? That's a piece, but you mentioned like, did I become a therapist, because I'm autistic? Instead of despite of- MEGAN NEFF: Yeah. PATRICK CASALE: Can you kind of go a little deeper on that. Like, elaborate more on what you mean by that? MEGAN NEFF: Yeah. PATRICK CASALE: Because I'm curious for the audience, like, yeah, so if you're coming to terms of I became a therapist, because I'm autistic, because… I don't know what that means for you? MEGAN NEFF: Yeah. Gosh, like, there's so many ways that inform that. I think one of the first things that comes to my mind is the hot potato phenomena. So, I'm curious if you relate to this, but ever since I was little, like, I've struggled with social-based questions, which is very common for autistic people. So, even now, like, my sister who I'm fairly close with, when we interact, she will often start with how are you? And now uncomfortable just be like, "I don't know how to answer that, Sarah." But when I was younger, whenever someone would ask me a question about my personhood, I'd have kind of that mini-freeze response. So, it felt like I was holding the hot potato in the conversation. And it was like, "Okay, how do I get them holding the hot potato." And I became very strategic with getting the other person talking. And here's the thing, people like to talk about themselves. And so, I learned that pretty young. And so, I got really skilled as an adaptation to my social struggles at drawing the other person out. And this is what's so interesting, right? If you look closely at my dialogues throughout life, I do struggle with reciprocal communication, but it wasn't obvious, because what I was doing was, I was not the reciprocal person in many of my conversations. I was drawing the other person out, getting them talking. So, people won't leave a conversation being like, "That was weird." They'd usually leave a conversation being like, "Oh, I felt seen, and understood, and that person's really curious about me." And that was a really sophisticated adaptation to my social struggles. So, that's one reason. I'm curious, first, like hot potato phenomena, do you relate to that at all? PATRICK CASALE: Oh, yeah, absolutely. I think that it's such a great way to turn the conversation around and take the pressure and the focus off of you. I'm just like, oh, I'm uncomfortable, but I know how to make this person comfortable and I can be that mirror for them, I can be that place to reflect, and be really curious, and be really interested. And learning that at such a young age is so fascinating when we start thinking back about our childhood experience and how we kind of navigated the world and made it, "safe" for ourselves. And I think that that, obviously, does allow for that person to feel taken care of, it allows them to feel heard, and validated, and seen coming away from the conversation probably like, "Megan is the best friend in the world. They listen so well. Like, they make me feel so much better." And I think that also, maybe at such a young age does something to our own sense of self when someone's like- MEGAN NEFF: Oh, my gosh, PATRICK CASALE: "Oh, You're really good at this. Like, you are a really good listener, caretaker." Whatever the qualifier is [CROSSTALK 00:06:27]. MEGAN NEFF: And that becomes their sense of self-worth and value, absolutely. PATRICK CASALE: Exactly, yeah. MEGAN NEFF: Yeah. Because it's our social currency. And I knew that, like, this is how I develop social currency. And it also, like, yes, it was more comfortable for the other person, but it's also more comfortable for me. Like, those conversations also did feel good to me, because it felt like, for one, I genuinely am curious about people, so that probably helps. But also, it just felt good to be that presence. I noticed that I was really interested in my doctoral program. What I noticed was I struggled to get close to people in my cohort. And what I did is I took on a role of mentor. Like, I TA'd all the classes and when I looked at my week, I was like, all of my social interactions are mentorships. And so, becoming a mentor is how I figured out a way to socially connect in a way that worked, because of the hot potato. Like, that's your role when you're a mentor, is to create space for the other. PATRICK CASALE: Yeah, absolutely. And it's fulfilling a lot of different needs by taking on that mentorship role or the helper role. And it's, also, I think, you know, thinking about my own journey into becoming a helper and a therapist is just the fact that it takes so much of the pressure, again, like you're saying, off of ourselves to have to be the center of attention. And I think if you're used to that, and that's been kind of your experience throughout life, it is a really great profession, because, you know, I'm not in there to talk about myself. I do disclose, I think that's necessary for connecting with any sort of neurodivergent client of mine, but like, I also just know and acknowledge that these 60 minutes doesn't have to be about me. And that takes all the pressure off of like, how am I supposed to show up, and act, and engage, and interact? MEGAN NEFF: Yeah, and it provides such a tight frame, like, these 60 minutes. So, I think we briefly mentioned we're both avoidant attached, like our structure, but I love intense authentic connection, which I also think is an artistic thing, which I think is one reason I became a therapist is my craving for the authentic. But I really struggle with maintenance of friendships. Like, I don't have friends, Patrick. Like, you are probably the closest thing to a friend in my life right now. And it's because we have a frame around work that we interact. Like, I don't really do friendship, partly because of the maintenance. And for longtime friends, when I have had them, they've felt like a thing to maintain. I realize that sounds terrible. But I think it has to do with how limited my social resources are, the fact that when I do have friends I struggle to bring myself versus kind of foster conversation. So, there's a lot of things that go into that. But what I love about therapy is it's a tight frame, I am present to that person for 60 minutes, and I'm very present, and that's the frame. There's not an expectation. I mean, obviously, there's charting and if there's like email correspondence that needs to happen, but there's no expectations outside of that frame around how you're going to maintain this relationship, whereas, in other relationships, it's like, "Well, you haven't texted me for six weeks or you haven't…" Like, there's all that maintenance that goes into it that's really, really hard for me. PATRICK CASALE: Yeah, yeah, that's such a good point. And I just want to circle back. I feel honored to be… MEGAN NEFF: My only friend. PATRICK CASALE: Yeah, your only friend right now. MEGAN NEFF: Do you have friends? PATRICK CASALE: I do. Yeah. I mean, I find it challenging. Like, it's a weird… I'm trying to put cohesive thoughts together right now. MEGAN NEFF: It's hard. PATRICK CASALE: It is hard. I think that my experience is that people often are more attracted to me socially or in terms of friendship than I am to them, and- MEGAN NEFF: Yeah, yeah, I get that. PATRICK CASALE: I have a lot of people who consider me to be, like, one of their closer friends, when in reality, like, I don't really know that much about them nor do they know much about me. So, that's always a strange dynamic. But I mean, I've always been a part of soccer teams and just, I think, that having that type of like, cohesive camaraderie has been really helpful for me, because you don't really have to show up to a team sport with the intention of making friendships or developing relationships. It's like, you're there for a common goal, right? Like, our goal- MEGAN NEFF: It's kind of all play, yeah. PATRICK CASALE: Exactly. And you're there to just perform as a unit. And like- MEGAN NEFF: Sounds so nice, yeah. PATRICK CASALE: …that's my solace. Like, I'm not a religious human being, but when I get to the soccer field is like my teammates, still, to this day will make fun of me, because I show up, like, an hour early, and they'll show up like 12 minutes before kickoff, and I'm like, "How are you fucking doing this? Like, I need to stretch? But I just find that that is the one place in my life where I have, like, just complete relief, where you and I have talked about that constant buzz, and that discomfort, and that anxiety, and that everything that is our experience, but like that is the place where that is gone, it's just vacancy, it's just like, complete silence. And I think that, for me, is the most peaceful place on Earth. I've realized diverging way over here now. But yeah, so I do have some friends. I would say that even if I have people who I like a lot, and I spend time with, and I consistently communicate with, I still feel disconnected from them. I don't feel like we're, like, always attuned or in sync, because I think I also keep myself at a distance. And if we socialize, it's got to be at my house, it's got to be at the places I'd be comfortable going. And I imagine that's challenging for some of them who are like, "I don't want to fucking go to this place, like, for the 100th time. Like, I don't want to come to your house. How come you never come to my house?" But that is the nature of a lot of my relationships, for sure. MEGAN NEFF: Yeah, yeah. Well, I mean [CROSSTALK 00:13:12] we're on a rabbit trail, but maybe not. I also wonder… So, one of the things I learned early in the, like, autism research discovery phase was how autistic people do better in kind of structured social interactions where they have a frame. So, like, it could be as simple as if you're at a party, you become the person that washes the dishes. Like, you have a role and that's so helpful. And I so resonate with that. But I wonder if part of becoming a therapist is it gives a role to the really deep way of interacting with other humans. And so, it is a more tolerable way of socially connecting, and a way of connecting really deeply, and really meaningfully. So, I wonder if the struggle around social connection and the desire for social connection is one of the reasons that we became therapists or the other autistic people might become therapists. PATRICK CASALE: Yeah, I think that's spot on. I also want to give you credit for looping me back in. You know, it's usually the other way around, so… MEGAN NEFF: Are you more in your ADHD brain today? PATRICK CASALE: Majorly. I've got Ireland coming up next week. My brain is so scattered. But I think you're right. I think it's that deep desire to have connection. And having that regimented, structured, almost like this is what to expect in this environment, this is what's allowable, this is what's not, this is what we talk about, this is what we don't, then we have these clear boundaries for the most part of like, okay, after that 60 minutes, not that you don't think about your feelings after that 60 minutes, but like you don't have the pressure and responsibility is no longer on you. And I do think that it allows you to have that human connection, that empathy that so many people misconstrue and misunderstand like, the mythology of like, "Autistic people can't be empathetic, and they can't like connect with other people." And that's fucking bullshit. But [CROSSTALK 00:15:16]. MEGAN NEFF: Right, right so many of us are hyper empathetic, yeah. PATRICK CASALE: Right, like, it has to be deep. You mentioned depth connection and I think therapy allows you to have consistent depth connection. MEGAN NEFF: Like, it's so… the word oxygen is coming to my mind. It's oxygenating to have deep human connections. The small talk is not oxygenating for us. I saw a study once, so like small talk releases dopamine for non-autistic people's brain. I was like, "Wow, that must be nice, no wonder they do this nonsensical thing." But one thing I told my therapist awhile back was, and forgive me if I've said this on this podcast before, but I was like, "I feel like I don't have social ligaments." Like, so ligaments what make our body move. But I'm really good when we get into the muscle. So, like, once I'm in a deep conversation I'm good. But like the transition, the small talk, getting into that conversation, getting out of it. And therapy, it's mostly all muscle, especially, now that I work primarily with autistic clients, we just jump right in. Like, I love it. My clients, we don't do the, like, small talk five minutes. When I was working with non-autistic clients there would still be like, typically, a five-minute small talk before you get into the session. And with autistic clients is more like they're just like, "Okay, this is what's on my mind. Let's go." So, I love that it's okay I don't have social ligaments as a therapist. PATRICK CASALE: Yeah, I think that takes a lot of that unnecessary energy, emotional labor, and energy for us out of the equation, you know? And I've been trying to be mindful, not just for our sake in the dynamic, but like my own sake of like, when we get into the Zoom Room not being like, "Megan, how are you doing?" And then you're looking at me and be like, "Stop fucking asking me that." MEGAN NEFF: I literally was just thinking about how I was like, "Patrick, can we just hit record when we get into the Zoom Room?" I wonder if that was my way of saying like, can we just get to the muscle and not try and do the social ligament thing because I don't like that. PATRICK CASALE: I think that's it. And it helps me too, because I don't like it either. And I think that it's just allowing for that state where you feel the most at home, or natural, or at peace in terms of however we can do those things. And I just think that as a therapist, you know, having that empathetic reflection process going deep, being curious, asking questions, like, it's really a lovely experience, and one that we don't often have in our day-to-day. And it makes me think of clients who I had starting off like in private practice where I didn't know I was autistic. I also didn't know who I was, as a therapist. I was just, like, trying to figure out how to be in private practice. And the artificiality, the small talk, the clients who weren't ready to go deeper, the clients who weren't a great fit or who probably, you know, it just felt like pulling teeth a lot of the time, and I just noticed how irritated I would get, and how, like, bored I would get too where I was just like, "Okay, do we really talk about this thing over and over and over again?" MEGAN NEFF: Yeah, yeah, yeah, PATRICK CASALE: You know, I want to think about one thing too. Like, we are so good at absorbing other people's energy and picking up on how people are experiencing the world, especially, people who are struggling. Like, we have that fucking radar where we're like, "I can tell this person's really having a hard time." And you and I talked about this last week, where we were talking about, like, talking to just folks who maybe were homeless, and people who are struggling, people who were just like, really obviously, having a hard time to us, and just really picking up on that and wanting to be curious, wanting to talk, wanting to support. And I think that helps with being a good therapist, because that intuition, that ability to read body language so quickly, because we've gotten so accustomed to having to do that, and facial expressions, and eye movement, everything that goes into tracking, because we're tracking all the time anyway. MEGAN NEFF: So, okay, here's a provocative question. We're talking about the traumatized parts of being autistic, right? The adaptations we made to socially blend in, the hyper vigilance we have needed to have around other people to decode their body language, and how that has made us therapists. So, essentially, I think we're saying we became therapists out of our trauma. So, what do we do with that when we're both therapists? Well, actually, let's pretend you're still seeing clients. We're both in this profession. And we now are looking back being like, "Oh, my trauma brought me here." Like, does that take the meaning away for you? Like, how does that shape how you think about this profession if our trauma's what brought us here? And I think that's too reductionistic of a narrative. I realize it's also our empathy. But it's a both and, it's a mixed narrative. But it does seem like our artistic trauma around masking is a big piece for both of us that brought us to this profession. So, does that shape how you experience it for you? PATRICK CASALE: That's such a good question. I think that my conceptualization of being a therapist, because you know, for those of you who don't know, I also am a therapist in private practice and entrepreneur coach. So, like, a lot of my time is spent with therapists now not clients in therapy, but therapists who are working on the emotional and psychological side of business ownership. And this is just my take on therapists in general, not just autistic therapists, that so many therapists have become therapists because of their trauma histories, because of their healing journey. MEGAN NEFF: That's true. PATRICK CASALE: But here's the thing that I think happens, a lot of therapists get into this work to heal their trauma through the work that they do. MEGAN NEFF: Yep, which is fine if you have awareness that that's what's happening. It's really dangerous if that's happening and you're unaware. That's where therapists can do a lot of harm, I think. PATRICK CASALE: Absolutely, 100%. Like, everyone who's a therapist has their own story, has their own struggles. We're humans. I mean, we've all experienced it. It probably was a catalyst and a positive factor in terms of what do I want to be when I grow up which I [INDISCERNIBLE 00:22:16], but anyway, but I still don't know at 36 what the fuck do I want to be when I grow up. But I do think, like, without that awareness, yes, very damaging. But everyone has gotten into this field for a reason. But the difference, I think, is what I see with autistic therapists, is that you're not necessarily trying to heal yourself through the work that you're doing, you were brought to the work because of the masking trauma, and trauma that you've endured throughout life. But that's your only way of acknowledging how to be. So, I don't know if that necessarily changes, because you're helping other people understand this and process their own emotions and feelings. Like, I just think that when I'm in the therapy room, this is the only way I know how to be and the therapy room is the only place that I'm actually allowed to do this in a way where it's actually professionally helpful in that lens, because that's the only way I know how to show up. But you have to mask so often in so many other arenas. You don't always get to show up like this. And as a therapist, especially, like yourself, Megan, like working specifically with autistic clients, I imagine that feels so fucking freeing for you [CROSSTALK 00:23:36]. MEGAN NEFF: Yeah, it's amazing, yeah. PATRICK CASALE: Yeah, like, you already know going into these relationships, "I get to just show up and be real." And I think that feels really liberating. And a lot of people don't get to experience that. MEGAN NEFF: Yeah, yeah, it does feel really different and it's been a while, but you know, even last year, I had some people I was working with who weren't neurodivergent and I don't do that anymore and it's for a reason. It's because it does feel a lot more like masking. Yeah, it feels so freeing. It's the biggest kind of privilege and gift to come out of the last few years, is the ability to pivot to work with autistic clients. And I really feel for therapists who A aren't out, and B aren't able to curate their client load in that way, because it's really hard. PATRICK CASALE: Yeah, it is. I mean, and it's really hard. And that's where the misfiring happens, you know, that's when you start to doubt your ability as a therapist too, because the outcomes aren't there, the relationships aren't being established and, you know, that goes further than autistic therapists in general. I mean, that's just rapport 101, but I do think for us it's an even deeper, more important, even, like, absolutely necessary component of the work that we do. MEGAN NEFF: Yeah, yeah. And it's so interesting, if you saw me work as a therapist a couple of years to how I am now it's just so different. Like, before I would rarely self-disclose. Like, if someone's, you know, "Do you have children?" I'd maybe say yes, but then I'd like think through the pros and cons of self-disclosing that and maybe ask them like, why they needed to know that? You know, all that, like, turn-around of like, "Well, what would that mean to you if I had children?" I self-disclose so much now and I still am very reflective of why am I self-disclosing? Who is this for? Like, I've got my kind of filter I run through. But I think it was actually on a podcast you did with Joel Schwartz where you talked about how like, autistic people need, like, we need autistic mentors in the sense of we need, like, we don't have stories. And so, sharing from our lived experience in the context of therapy can be really appropriate. And I come from a more like psychodynamic lens where self-disclosure is very restrictive. So, that's been a really interesting shift in my therapy to think about self-disclosure so differently. But yeah, I'm just so different in the therapy room as a therapist than I was two years ago. PATRICK CASALE: You know, that's interesting to see the transition and evolution. And I'm thinking about my own journey too. Like, I haven't seen therapy clients in about six months now. But the ones that I was seeing before my throat surgery were all neurodivergent clients. And most of them were coming to terms of being autistic. And I just realized that you start to really attract the right clients when you're able to unmask and disclose yourself, like, as a professional. It really does empower the client to say like, "Fuck, finally, a therapist who's going to get it." Instead of like having to guess if you're going to understand or be affirmative. And I think we have an idea to do an episode about seeking out neurodivergent affirmative or neurodiversity affirmative therapy. And you know, you're playing this guessing game, a lot of the time, if someone doesn't come out and say, "This is who I specialize in working with and why?" And, you know, I do think that that disclosure piece is so crucial. And, you know, processing special interests in therapy is unbelievably therapeutic. But then, if you get caught up in the like, "How do I present this to the insurance company? And how do I talk about talk about the fact that you like talked about Lord of the Rings for 16 minutes?" But it's so unbelievably validating for you to be able to support someone who's autistic by diving deep into their special interests. MEGAN NEFF: I think you call that we engaged in coregulation and self-soothing. But that is what makes it, like, therapy, right? It's at the end of the hour then it's like, where were you during this hour? What was that like for you, for us to connect in this way? And that's that reflection, then at the end of talking about special interests you're connecting in ways that might not typically be thought of as therapeutic. That's, I think, what then makes it therapeutic is, then it's like, oh, yeah, I do feel connected to you. And it's because we're having an object-based conversation, not a social-based conversation or we're connecting around interests not this. I had a thought and then it I think it's gone. But I am a little curious, because the other part unless I'm, like, cutting off thoughts that you have around this, but the other part of the conversation was around people who are maybe in training programs or thinking about going through training programs. Like, I've heard some pretty horrendous stuff from people, like, things such as my professor said that you can't be autistic and a therapist. Like, this is the kind of things they're hearing in classes and from their professors, I mean, not even to talk about just the executive functioning and sensory overload of making it through a program but to be hearing from your professor's things such as autistic people can't be therapists. Like, do you have any words of encouragement, or like what would you say to people who are thinking about entering this profession? Who are in training? I'm giving you the hot potato by saying what are your words of encouragement for this really? PATRICK CASALE: Well, you know, I think what immediately comes up is kind of like rage, so then I have to center myself to think about how I want to respond appropriately. One, if you're listening to this, and you're in a program, and that's your experience, I think that we both just want to send you our deepest sincerest apologies, because not only can you be a therapist as an autistic person, you can be a fucking wonderful therapist as an autistic person. Your abilities to show up authentically set you apart from those who cannot. And I know so many therapists who went through a program and don't even get me started on the assembly line process of grad school at this point in time, but just have never done their own deep, reflective, oriented work. And I believe wholeheartedly that that sets us apart, because if you're willing to go deep and you're willing to have the hard conversations, you're going to be able to hold that space for your clients, you're going to be able to show up the way that they need you to show up when the conversation takes a turn from your connections and associations with the Lord of the Rings to like, "Hey, I'm actively suicidal and struggling with A, B, and C." You can't show up for your clients if you cannot be in that space. Like, if you can't go deep, if you can't sit with that discomfort, if you can't mirror back and forth, if you can't really pick up on what's happening behind the scenes for your clients. Like, these are so important. And we're all so gifted at doing these things. We're going to hear this, right? Like, from professors, from agency, community mental health providers, and supervisors like, "You can't have these accommodations, you can't stim in class, you can't move, you can't fidget, you're disruptive." The same shit that we've heard all of our lives, or some professors pushing ABA therapy, or whatever the case may be. But in reality, like, there's such a big movement right now and Megan, I'm proud to say that you're one of the people leading that charge in terms of like, showing up and helping destigmatize, and work on de-pathologizing what it's like to be an autistic human being, MEGAN NEFF: Yeah, yeah, yeah. Well, thanks for like, taking the hot potato and you have a way with words that I don't. Like, you should be in charge of the encouragement pieces on the podcast. I'm not able to encourage in the same way that you are, which is probably why I'm an analytic therapist, and not like a… no, but thank you. That was moving to hear you say those words. PATRICK CASALE: Thanks. And, you know, I think we could have a whole episode on this, maybe that informs next week's conversation, but not only how to seek support as a grad school student or a new therapist in the profession, how to find your own ND affirmative therapy. Like, we've got to be talking about this more. MEGAN NEFF: Yeah, absolutely. I just put up a handful of directories on my website, which we can link to. And thankfully, like, the directories that are out there are, I mean, they're small, but they're growing every week, to where I think it's becoming more of a feasible option even a year ago, because that is the number one DM I get is like help me find a therapist. And in the last year, I've seen a lot of growth, and I think it will continue to. So, yeah, there are some neurodivergent affirming directories or even just knowing, yeah, like what to search for or what to ask, we should definitely do a podcast on that. That'd be really helpful. PATRICK CASALE: This will help me next week when I message you and I'm like, "What do you want to talk about today?" But now we- MEGAN NEFF: Yeah, let's talk about how to find a neurodivergent affirming therapist and like, yeah, like what questions you should ask. One of the things that's hard is, it's so hard to find any therapist right now without a waitlist, that like the interview process of interviewing your therapist to become your therapist isn't really happening in the same way, because just getting in with any therapist, for most people is kind of the goal if you're in crisis. If you are wanting to do the deeper reflective work and can wait on a waitlist for six months, then you've got more options. PATRICK CASALE: Yeah, and we can talk about that next week too. I have a group practice, I have 15 therapists who work at that practice. It's so hard to turn clients away when you know that they can't find that support anywhere else. MEGAN NEFF: Yeah, when you can't refer them. Yeah, that's so hard. PATRICK CASALE: It's so hard. And it's so much more than just saying like, we have ND lived experience, right? Autistic group practice owner, autistic clinicians, ADHD clinicians, you got to do the work, too. I mean, it's not as simple as just like saying, I'm an anti-oppressive Black Lives Matter anti-racist therapist, you got to do the fucking work. MEGAN NEFF: Yeah, these are easy words to say now, but it's like, okay, the language is right. But does it match? Is the person doing the work? I love that, yeah. PATRICK CASALE: Are the values consistent? And it does mean hiring consultants and trainers to come in with lived experience who are experts in the field to help you continue to grow. Again, I'm diverging. I want to talk quickly. You know, I'm just being aware of time too, the double empathy bind to you, too. MEGAN NEFF: Oh, yeah. PATRICK CASALE: I want to talk about that because what happens, right? Is we mentioned this, alluded to this earlier, and a lot of you who are listening who may become therapists in grad school programs or therapist's, whatever the case may be may have been told by society that autistic people cannot be empathetic, cannot hold space, cannot be attuned. Megan, your thoughts? MEGAN NEFF: Oh, yeah, I love the double empathy [CROSSTALK 00:36:20]. Yeah, I love Milton's work. And so, did you know that they, like, did an empirical study to follow up with this theory? Okay, so can I dunk for like five minutes? PATRICK CASALE: Sure. MEGAN NEFF: So, yeah, the theory comes from Damian Milton. I think I've got that name, right. I'll correct it in the notes if not, but believe he's a sociologist in the UK who is autistic. And it's this idea that… And by empathy… So, there's different kinds of empathy and what he's really talking, I think, primarily about cognitive empathy and perspective taking and this whole like theory of mind idea of, yes, autistic people struggle to understand neurotypical people's theory of mind, but also the neurotypical or allistic person struggles to understand the autistic theory of mind. But autistic people understand autistic people. So, it's a cross-neuro-type interaction. It's not that there is a deficit in the autistic person's theory of mind or ability to consider the subjectivity of another person. So, there's a follow-up study done by another group of researchers who were like, "Let's test this theory." So, what they did is they had groups of dyads. So, they had three different groups. They had autistic to autistic parents, non–autistic–non–autistic, and then autistic-non-autistic parents. And they had them either do some sort of activity or have a conversation that was structured and then, after the interaction, they each rated the report. And report was just like how easy was it to connect with the other person. Now, if we're going with the deficit model of autism, you would think that the autistic to autistic partners would struggle the most, because you'd have two people with social communication deficits trying to interact, right? And so, if that's true, then that would be the worst. And then, the autistic-non-autistic parent, the non-autistic person could like, hold up, you know, the non-autistic person by all of their social awesomeness. But if the double empathy problem was right then you wouldn't see that. And that's exactly what they found. The report was the highest among non-autistic-non-autistic, second highest among autistic-autistic, and lowest among autistic-non-autistic, so cross neuro-type. They did a follow-up study where people were watching videos and reported them. And the autistic - autistic parents were actually the highest report of observers, which was really interesting. So, what this research essentially shows is that it is a cross-neuro type interaction that makes it harder to build rapport, harder to understand what the other person's thinking, not an autistic, like innate deficit that is baked into us. It is a dynamic that happens between two people. PATRICK CASALE: I love the way you laid that out. And that just speaks volumes to how ableism has misconstrued how we kind of perceive autistic people to be able to interact, too. And I think that, you know, we can say that it's… you can all think about your friend groups and your social relationships or anyone that you feel connected to. And I would encourage you to think about that, like, neuro-type interaction, and communication. How easy does it feel to fall into communication and conversation, and socializing? How easy does it feel to be able to build connection and rapport? And as therapists, this is a crucial component of our work. Building rapport is the foundation. I think if you don't have it, it doesn't matter how good of a therapist you are, the client's not going to have a great therapeutic experience, and vice versa. And it just speaks volumes to the ability to do so and to really come alongside and easily kind of drop into relationships. So, I do think that's a really important thing to remember. And Megan, again, loved the way you laid that out very, very clearly, too. MEGAN NEFF: Yeah, I love that study, because I think it gives us empirical grounding to start talking and training therapists of thinking through cross-neuro type interactions through a cross-cultural lens that that is how therapists should be approaching. So much of the training is just kind of gross to hear how you should engage your autistic clients. Like, it is so much more enlivening and expansive to talk about it. Like, this is a cross-neuro type interaction, a cross-cultural interaction that's happening, leading with intellectual humility and curiosity as we would in any cross-cultural therapeutic dyad. PATRICK CASALE: Yeah, absolutely. I actually interviewed an autistic therapist on my other podcast yesterday and she was just talking about the frustration around grad school programs really not getting this right. And honestly, hardly ever fucking talking about it. So, we need to have more courses popping up in grad school programs on how to work with neurodivergent clients and not just simply a glimpse of like, oh, yeah, these are some disorders in the DSM. MEGAN NEFF: Well, and when it is talked about it's typically talked about in children. And here's the thing is, like, we're in therapy, right? We know that so many of us have PTSD, substance abuse problems, anxiety disorders, depression. Like, the list goes on and on, we're in therapy. I think programs don't realize that, they don't realize that we're in therapy, we're diagnosed with other things often, and we're being treated for other things, but we're there. And programs will really need to be thinking about this in the next, well, yesterday, but in the next 5, 10 years, I really hope that they start seriously considering how do we work with neurodivergent adults. PATRICK CASALE: Yeah, absolutely. I mean, you know, those neurodivergent kiddos become neurodivergent adults. It's not like, you know, autistic kiddo, then all of a sudden no more autism. I like to think about it as like the ADHD or autism is the foundation of the house and the PTSD, the substance use, the depression is the furniture. MEGAN NEFF: Oh, I like that metaphor. That's helpful. PATRICK CASALE: And I think it all starts to come together when you start to realize like, if this is baseline, right, and then you're experiencing these symptoms of mental health because of neurodevelopmental condition. MEGAN NEFF: Well, yeah, so then if you're treating the PTSD, so you're getting new furniture, but like the foundation of the house is cracking and breaking, because you're not addressing like sensory needs and all these other things. It doesn't matter how much, like remodeling you do of the furniture if you're not addressing the foundation and the vulnerabilities there. PATRICK CASALE: Yep. Well, I am going to segue us out of this, because my instinct's [INDISCERNIBLE 00:43:45] like, "So, now let's do this thing." But I'm just being aware of time. And I think that this is a wonderful conversation, one that we could have guests on and talk about their own experiences as autistic therapists and grad school participants, what we would like to have seen differently in school, what we want to see for the future generation. And I think that, you know, if we can continue to all advocate together, then hopefully, we can make some fucking change. And, again, to those of you who have experienced what Megan brought up, I'm sorry, and I hope that you can find solace in the fact that there are a lot of autistic therapists out there doing this type of work, openly discussing their livelihoods, and sharing their experiences, because I think it's helpful to validate and to help, hopefully, "normalize" the human condition and experience that we're all having together. So, I just want to say thanks for this conversation, Megan, and I'm looking forward to talking about how to find ND affirmative care next week. MEGAN NEFF: Yeah, thank you. And that sounds good. And I'm awkward with goodbyes. PATRICK CASALE: I'll take over. So, everyone thanks for listening to the Divergent Conversations Podcast on all major platforms, weekly episodes out. Like, download, subscribe, and share. We'll see you next week, thanks.
Sylvia O'Connor grew up poor in a small town in Louisiana. At age 19, she left Louisiana for the first time and headed to Detriot. She earned a bachelor's and master's degree and started in what would become a successful 30-year career in the health care industry. She was also an adjunct professor in allied health. Proving that it is never too late, she has now ventured into entrepreneurship by forming her own company Sylvia O'Connor SOAR LLC to do speaking and training. Sylvia is the author of “Living The Abundant Life:” 9 Principles to Move from Poverty to Prosperity. https://sylvia-oconnor.com/Korynn Newville is an artist, designer, and environmental activist and author of Indiscernible Elements: Calcium. She is currently an architectural designer studying to become a licensed architect who strives to utilize sustainable building practices in her professional projects. Korynn believes in the use of our imagination to offer new solutions to problems, and her artwork is her voice to tell the story. Her drawings and passion for the environment are the catalysts that led to her writing. https://www.newvillekorynn.com/Richard McPherson is the CEO of Idaho Energy, Inc, a subsidiary of MicroNuclear, LLC. Richard McPherson has been involved in nuclear energy since attending Admiral Rickover's famous Nuclear Power School in 1964. After his 20-year Navy career, Richard was asked, because of the Chernobyl accident, to be the United States Representative to the International Atomic Energy Agency, on a special six nation group to study “Nuclear Fuel Cycle Facilities, the Environment and Public Opinion.” Today, his focus is on manufacturing consent and deploying the Molten Salt Nuclear Battery worldwide, thus fulfilling President Eisenhower's offer to provide American nuclear energy to the world for peace, prosperity and security. https://micronucleartech.com/This show is part of the Spreaker Prime Network, if you are interested in advertising on this podcast, contact us at https://www.spreaker.com/show/3240061/advertisement
Books That Make You Reconsider an Element Like Calcium Even as so many things connect us in this world and in nature, often we fail to see the most fundamental, and important, elements. Literally. Not Korynn Newville. She kicks off her new series “Indiscernible Elements” with a unique take on the element calcium, in her book, Indiscernible Elements: Calcium. Yes, that well-known health benefit touted in so many a milk or orange juice commercial. But, as Korynn shows, it's so much more. An architectural designer, artist and activist, she describes how calcium is in us, and all around us. Through illustration, poetry and dialogue, Korynn explores in her book the path a molecule of calcium can take through various stages of life and death. Korynn's passion for the environment was the impetus that led to her writing and her eco-activism. She seeks to deliver a message of hope, connection, and adaptation to share with the world. Find out more on Books That Make You. You can also follow us on Facebook and Instagram.
For individuals who've wondered if they are autistic (or know they are but haven't been formally diagnosed), it can be a complex journey to first decide whether or not to seek a formal autism diagnosis and then to learn how to restructure the way they see and interact with the world. Getting diagnosed and embracing yourself as autistic can feel like tearing down a wall (or removing your mask). And you can finally see yourself clearly, but so can everyone else. You might feel relief, you might feel grief, you might feel like you don't know what to do next, so if you're trying to decide if you want to get a formal diagnosis, then this episode is for you. Top 3 reasons to listen to the entire episode: Hear 2 different diagnosis stories from Megan and Patrick, including a before and after look at the way they showed up in the world. Understand the many different ways that autism presents and is perceived across different ages, gender, race, and other backgrounds. Identify what it means to unmask and how to do it for yourself. There are many misconceptions and cultural stereotypes around autism that make a misdiagnosis or complete overlooking of autism very common. Even Patrick and Megan didn't get diagnosed until adulthood. If you are wondering about a diagnosis for yourself, a family member, etc., then hopefully these stories can help you find the answers for you. Transcript PATRICK CASALE: Hey, everyone, you're listening to another episode of the Divergent Conversations Podcast. I'm your co-host, Patrick Casale. MEGAN NEFF: And I'm Dr. Neff. PATRICK CASALE: And today, we are going to talk about our diagnosis stories and how we ended up, you know, desiring to go get evaluated and seen to figure out if we were autistic, ADHD folks, and just get some grasp of what was going on in our lives. Figured it's a good topic to talk about early on in this podcast journey, because I think it helps frame things for everybody too. And, Megan, I don't know if maybe you want to start us off and kind of take it away with the build-up of what led you to decide that you wanted to seek out a formal diagnosis and what was going on prior to that, that kind of made you start thinking, this is something I want to do? MEGAN NEFF: Yeah, it's interesting, because I think you and I have different diagnosis journeys, in the sense that, when I've heard you talk about it there was an element of surprise to it. I think my experience might be more common among, particularly, women and genderqueer people of, I was like, I had already self-diagnosed. And I was just like, looking for that extra validation. Which honestly, I actually wouldn't have done if I wasn't publicly talking about being autistic. And my biggest fear, not my biggest fear, I don't like hyperbole words, pronunciation warning, hyperbole. Actually, I don't think I could say that word even if it was afternoon, hyperbole. How do you say that? PATRICK CASALE: Now you're going to, "I'm going to be questioning how this [INDISCERNIBLE 00:01:58], hyperbole [CROSSTALK 00:02:03]. MEGAN NEFF: That word that I cannot pronounce. Oh, my goodness, my language use is just, like, people in my life have… this has been one of my Megan Anna quirks, is like, the way I make up words, the way I pronounce words, I add syllables to words. So, whatever that word is, wow, that was a tangent. So, one of my fears has been that psychologists or other people in the mental health field would look at me and be like, "She's not autistic." Blah, blah, blah, blah, blah. So, that was a lot of the motivation for seeking a formal diagnosis was, if I was going to be in the space advocating as an autistic person, I thought it was good to do due diligence around that. So, my story is probably more about myself diagnosis, actually, which really started with my child, which again, is pretty common story for the last generation of autistic women, and genderqueer people. And my kid's diagnosis was also a bit of a surprise, even though, it's so interesting, because my training as a psychologist, in some ways, made it easier to see my child and then otherwise made it harder, because probably for a couple years leading up to their diagnoses, there'd be a time where, because they'd already been diagnosed with ADHD. I'd been like, "This feels different than ADHD." And I'd maybe Google autism. And then, my husband and I would talk about it, and we'd come up with some reason why it wouldn't make sense. But then we had an… I'm noticing I'm struggling to talk about it. My child has given me permission to share their story. But as they're getting older, you know, their feelings on that might change. So, I'm trying to be descriptive while also being vague. But there was an experience that looking back was very much them interpreting something literally and having a really big reaction, which we'd been coding as dramatic and all the things autistic girls get coded us. And we went on a walk after the kind of meltdown and I was like, "Hey, did you actually believe what dad had said in that moment?" Okay, it's not going to work to be super vague about this. So, I'll tell the descriptors of the literal thing. We're a vegetarian family. We have been for years. And my child was asking, "Is there meat in this?" We had nachos one night, and there's a lot of kind of checking behavior. And my husband said, jokingly, "Yes, there's meat." Which it's a question that happens pretty much anytime we have any sort of fake meat. And that's what led to the big reaction. And based on context cues, based on knowing our family culture, like it would not be meat. So, that was what they had taken literally and had a big reaction to. And then, on our walk is when… And this is a very autistic thing. I think a lot of parents, like, think through, try to figure out their kid's diagnosis before just bringing it up to their kid. But I've always been very honest and open with my kids. They were also 10, 11 at this time. But I was like, "Hey, what if it's something like autism and not ADHD." And their response was really incredible around it, was like, "You know, I'd still be me, we would just, like, understand me differently or understand me better. It wouldn't change who I am." So, that started a rabbit trail of learning about autistic girls. And we decided that day, like, we went on a TikTok binge, actually, and we're learning all of these things about autistic girls. And her whole story made sense, my whole experience of parenting her made sense. I was very confused by parenting this child. And so many things clicked into place, which of course ignited my special interest energy. And that then led to hours and hours of research around autism in girls, and then, autism in women. And then, learning that, typically, when a child is autistic, one of the parents is on at least broader autistic phenotype, however, we feel about that term. And at first, I was like, scaring my husband's tree, because he's very introverted and like systems, so at one hand that made sense, but he understands social cues in a way I don't. So, then, I was looking at my family tree. And I was like, "Oh, I see it. And I see it in me." It was really cool. I have access to a ton of psychological data on me, because in my training I did an IQ test, I did like pretty much any personality test or assessment I would give to a client I've given to myself. So, I had a ton of data. So, I was doing the research, I was doing the, like, IQ in the screeners you can do online, but then I was looking through all of my psychological data, even things like when I did my IQ test my processing speed and working memory were so low compared to, like, my verbal intelligence and my other forms of intelligence, which is really classic of a autistic ADHD profile. So, that's kind of my story was, it started with my kid's discovery, which led to special interest, which all of a sudden my life felt like it clicked into place. And within a week of doing the research, I just knew. I knew I was autistic. I have a very distinct memory of sitting across from my husband and telling him, "I feel a piece of my body for the very first time in my life." And not because my body is suddenly magically an easy place to occupy, it's not but I wasn't at war with him anymore. I wasn't, like, the best way to describe it is I was bracing for impact constantly. And all of a sudden, I realized I was doing that, I realized I'd been doing that for 37 years. And I felt aligned. I felt aligned for the first time. PATRICK CASALE: Thank you so much for sharing that and your daughter's story as well. And it sounds like once that realization came to place between the two of you, it was almost as if everything started to align and make sense. And I want to circle back to a couple of things that you said, because I think it's important for people who are listening. So, one, the moment where your husband was joking about like, "Yeah, there's meat in this." And that joke just completely being taken literally and the inability to parse that out or differentiate between that is so common, right? And gets often missed and leads to that meltdown, or that frustration, and that shutdown in general. And then you mentioned something prolific that your daughter said at how old 11, 10? MEGAN NEFF: 10 at the time. Yeah, I mean, she's always been very, like 10 going on 30 You know, she's always been acting like a little philosopher. PATRICK CASALE: I love that she was like, "Yeah, I'm still going to be me." MEGAN NEFF: Yeah, PATRICK CASALE: You'll just understand me in a different way. And I think that's really profound, one, and just beautifully said. MEGAN NEFF: Yeah. That moment has stuck with me for so long, because I think I was more afraid of the diagnosis than she was. PATRICK CASALE: I was going to ask you about, you said that you were trying to rule out autism, right? Like, ADHD is here, but then my husband and I are, like, looking at autistic traits and then convincing ourselves like, "No, it can't be that." MEGAN NEFF: Yeah, and I mean, I think there certainly could have been some ableism in that, I think it was more like, especially, when she was younger, would love to talk with people and very, like, seeking out of people, and now we know this, like autistic girls can be hyper-verbal, she definitely was. And it was more because of our stereotypes of autism, that we were like, "Yeah, pieces of this fit, but then that." And then my husband, also, he at the time was in education. And this has been an interesting conversation with him around diagnosis, the kids that get identified in education systems, typically, are kids who also have pretty significant learning disabilities with autism, which our daughter does not. So, she presents differently than also, like the kids that he was used to, like, associating with autism, which again, we know this, right? When we look at highly intelligent, and I apologize, this research has been reported in the gender binary, so I am reporting that in the gender binary. But when we look at highly intelligent girls to boys, the diagnosis is nine to one, meaning what used to be considered Asperger's, nine boys to every one girl identified. Obviously, we know that's not the true ratio. That's the ratio being identified, which means these smart autistic girls, we just don't understand. We don't understand how it presents, what it looks like. So, it was more that I think that made it hard to recognize was the gender bias, I think. PATRICK CASALE: Yeah, like, she's not fitting into this mold that is easily constructed. And this isn't adding up to us. And it's really interesting how you were able to kind of look through different lenses, both as a parent, both as a psychologist, to try to kind of parse that apart, and then, to be able to do your own research on yourself and have that data is really useful, something that people don't have access to a lot of the time. And so, it's fascinating to hear this story, and then, to have that moment for you. And I think that's really beautiful, just as a friend and colleague of yours to hear you say, like, "That was the first time I felt relief in my body." And I like that you named, it doesn't mean it's made it any easier of an experience, because I get exactly what you mean. But it's just that realization, right? Of like that mental fatigue, the almost gymnastics that we go through on a interaction by interaction basis that we're bracing for and we don't know that we're doing it until we have some acknowledgment or realization take place. MEGAN NEFF: Yeah, yeah, absolutely. Like, it was a really interesting experiment around that time. So, I've always walked fast. When I was younger, it would be referred to as the McMohan walk, because that was my last name before. And I've always been a fast walker, like people that are time keeping up with me, which is funny, I'm 5'2, I'm short, but I'm just… And it was a few days, like, after my discovery, and I was walking to get mail, and you know, there's kids playing, there's dogs, there's cars, and this was actually a relatively quiet neighborhood. But for me, it's a lot. And I just noticed how like I was tense, my shoulders were tense, and I was like walking as fast as I could to get mail. And it's like holding my breath while I'm out in the world. And I did this thing I was like, "What if I just relax, walk slow, and notice. Like, notice the sensory stuff?" Because for me I had become very disassociated from my body. And so, it was a really interesting experience of letting myself notice the dog barking, letting myself notice my body was irritated by it, and letting that kind of flow through me. And so, I began, actually, noticing my sensory sensitivities more but it also, because I wasn't like this rigid icicle that could just be… you know, if you think about like rigid icicles, they break off when you apply tension, because I was able to melt into it a little bit more, I found more flexibility in how I was experiencing my sensory world. It's a hard thing to put into words, but it was a really interesting experience. PATRICK CASALE: Everything about you is so meta. I love that you're, like, breaking this down in this way while this is happening. The sensory stuff is a whole, I think, an episode in itself for sure. And I like your mindfulness approach to a lot of this that we talked about last week. To our listeners, this could be helpful, just Megan's approach in general and how she's going through the day and kind of noticing how certain sensations are impacting her. But yeah, this is really interesting. And I think, you know, just recognizing that the research is so skewed. And obviously, we're missing the mark a lot of the time on people who don't look like me. And even then, both of us being late adult diagnoses, I mean… MEGAN NEFF: Well, I was going to say you do look like you and you were late diagnosed. So, yeah, I want to hear more… I know I've heard parts of your story, but I don't think I've heard it as a cohesive narrative. PATRICK CASALE: I'm trying to think of if any part of my life feels like a cohesive narrative. MEGAN NEFF: I know, as soon as I said that I was like, "Oh, that's a lot of pressure." I definitely did not do a cohesive narrative. PATRICK CASALE: I think you did. Yeah, so I'm 36 now and I was diagnosed last year, was it last year? Maybe it was two years ago. Time is- MEGAN NEFF: What is time? PATRICK CASALE: What is time right now or in general? I think it was two years ago. And I had been diagnosed ADHD several years beforehand by someone and I had gone in to get testing, because I was having these experiences that I think often overlap with complex PTSD, of like, really low self-worth, low self-esteem, inability to feel like you can be loved or receive love and just a lot of inner personal shit going on that you could certainly look back at attachment wounding for sure and childhood trauma. But I just remember a psychiatrist that I worked with at the hospital's setting that I was working at, at the time as a therapist, was like, "I think it's ADHD. Like, the constant, like, 'I want to be elsewhere, and something else can look different, and more exciting.'" And we were just having some conversation one day and I was like, "Okay, well, I guess that could make sense. I'll go take a look." I'm trying to really figure this out for myself. I had been misdiagnosed so many times, which I know we're going to do an episode on misdiagnosis at some point. But you know, misdiagnosed bipolar II, misdiagnosed with OCD, misdiagnosed with GAD or generalized anxiety disorder. You know, I'm trying to think of what else is in that mix, but- MEGAN NEFF: And were these adult diagnoses? PATRICK CASALE: Yeah, like in my 20s. So, some of them fit the profile to some degree, you know, like [CROSSTALK 00:18:00]. MEGAN NEFF: Yeah, I was going to ask you if they felt like true misdiagnoses or like, they just weren't capturing the whole picture. PATRICK CASALE: I think it was, at the time, I didn't know any better. I think that I felt like it was accurate. Like, bipolar II, I was like, okay, my mom has bipolar disorder, I have a gambling addiction, I'm very impulsive, I'm having really bad mood instability. And then when you go on these anti-psychotics for a year or two- MEGAN NEFF: Oh my gosh. PATRICK CASALE: …it changes or they get worse. So, it's just like those little things that you don't think about in the moment if you have the understanding or even knowledge to pursue that. So, I was sitting in this psychologist's office going to get testing for ADHD, and she was like, "I think you're autistic." This is before we even started talking really, I'm just like, sitting on her couch. And in my opinion, you know, even as a mental health professional, I find it very uncomfortable during your first couple of meetings with anybody who's a new person in your life. So, yeah, I kind of was like, taken aback by that. And I said, "Like, why are you saying that?" "Oh, like your affect is just very, very flat and your emotions are very blunted. And, you know, a lot of one-word answers." And I'm like, "I just met you." MEGAN NEFF: She just communicated to you in a really autistic way. Like, very matter of facts. So, like, "Oh, well, because this, this, and this, I think you're autistic." Like… PATRICK CASALE: Right, then I'm like, "Well, no, I'm not here for that. Like, I'm here to get testing on ADHD." And I think she probably was like, "Ooh, good, I'm just going to- MEGAN NEFF: She backed off. PATRICK CASALE: …let you do what you want to do." And, you know, get this formal diagnosis of ADHD. It all makes sense. It all clicks. And for a couple of years I'm feeling like, okay, I've got a good sense of what's going on in my life and areas that I really need to kind of get some more clarity on and work through, because it's impacting me. What I started to realize like over the last couple of years was the constant, constant feelings of loneliness and disconnection in every social interaction that I experienced. And that was just like, with people who I know, like, logically, know, they care about me, they love me, they have my genuine best interests at mind, whatever, even my wife, or close friend group, and just really feeling like in every social situation I was just really struggling. And realizing that that has been my entire existence of socializing in a way where, you know, we talked last week about alcoholic needing to be involved or like, just simply feeling so much discomfort, like that crawl out of your skin discomfort of like, "I just got to get the fuck out of this situation." And it made feeling connected really challenging. And, weirdly enough, this is probably not going to make a lot of sense for a lot of people, but my turning point of figuring this out was being at a conference in Hawaii, a therapist conference in Hawaii, a couple of years ago, and going to see the Anthony Bourdain movie that had just come out, because I have always been a huge, huge fan and was watching his experiences in the movie. And they were talking about like, his close friends and colleagues about like, the constant loneliness, and disconnection, and always wanting to be on the go, but always wanting to come back home and feeling that push-pull, but never really feeling belonging. And I just remember having lunch with a friend, and she was like, "I think you should just maybe go get tested and see if you're autistic." And I was like, "I don't know." It was definitely my own ableism coming out, but I was like, "No, like, that's not a thing here, you know, that's not what I want to look at, and I don't think that's true." But I did pursue it. And all the testing and all the results made sense once I heard it, and I told you this. Like, I have this experience of simultaneous like cooccurring grief and relief. And just was that process of like, relief, right? Like, you almost said, like, the first time you had felt this feeling of relief in your body, for sure. Like, okay, this all makes sense. Childhood makes sense, all these interactions made sense, like, and then grief of, fuck, I don't know how to move through life now because [CROSSTALK 00:22:38]. MEGAN NEFF: And it's permanent. PATRICK CASALE: And it's permanent, and it's framed in the way from the psychologist of like, "And you're going to need to constantly have adaptation to be able to get through life, because of how challenging life is going to be." And I'm thinking in my head, "I'm 34 years old. Life has already been fucking challenging, it hasn't changed." MEGAN NEFF: Yeah, yeah. PATRICK CASALE: So, yeah, I didn't have that really profound moment that your daughter had where it was like, "Yeah, but I'm still just me." And other people told me that like my wife, and some close friends were like, "But you're still you. Like, it doesn't change anything." And I was like, "But I think it changes everything, actually. For me. It changes everything." MEGAN NEFF: Yeah, yeah, totally. And when you say it changes everything were you thinking future? PATRICK CASALE: Yeah, I think it was all about the future and seeing everything through this autistic lens now. And then I do this thing. And I don't know if you are, you know, guilty of this to some degree too, but starting to make associations of everything about like, is it because I'm autistic? Is this because it's my social? Everything. MEGAN NEFF: Yeah, yeah. PATRICK CASALE: So, it's an been an interesting journey. But I would say that it has given me permission once I've moved through the acceptance stage of who I am, and the identity, and the struggles that I experienced, that it has given me permission to just feel more comfortable in who I am too. And I'm sure, you know, we can have a episode on unmasking and masking at some point in time. But it almost allowed me to start unmasking more, because I started to ask for what I needed, and state how I was feeling, and why I was doing something. Because, you know, we get this societal pressure to show up a certain way, socialize a certain way, communicate a certain way. And instead, I was just like, "Fuck this, that's not who I am. And I can't do it anymore." Because it feels like that pressure is just building, and building, and building, and it just feels insurmountable at the end of the day. MEGAN NEFF: Okay, I'm having associations. I'm not sure it's going to make sense. But this idea of you feeling more comfortable, and then, grief, I kind of wonder if they're the flip side of the same coin, because I definitely experienced, like, I became more aware of my social awkwardness after my diagnosis. I think I always knew I was like intellectual and like, would be kind of overly academic in my conversation with people, and then, I could be awkward, but I think I intentionally didn't focus too much on that. But then after my diagnosis, I realized how awkward I could be. And like, all of a sudden, these awkward moments was like, "Oh, that's because I'm autistic, not because I'm like, some like, intellectual academic." Like, that's a much nicer, you know, narrative. And so, there's grief with that. And here's the thing that maybe won't totally tie in, but my thought is, what if part of the unmasking experience is we're grieving the burial of our masked self, in the sense that there's probably some fantasy that the mask that we're working so hard to hold on to is a real self, because we… like Pinocchio wanting to be a real boy. Like, wanting to be neurotypical. We're bearing that when we unmask. And there's grief in that. And I think on the other side of that is the comfort, but it takes the grief. I was just talking to someone the other day about this about how part of my freedom socially has come from, I know, not all the time, but 90% of the time I accept I'm awkward. So, if I'm public speaking, or even in this podcast, if I have an awkward moment, or I can't say a word, I embrace that of like, oh, that's my ADHD brain combining things or that's my autism. But I had to grieve that I wasn't my mask before I could be comfortable embracing my social awkwardness and other quirks. PATRICK CASALE: Yeah, I've never thought about it that way. But I think you're spot on. And I wonder if that feels really commonplace for adult-diagnosed folks? Like, where you've spent decades of your life trying to act or present a certain way and trying so fucking hard to not be awkward, not be weird, socialize, pick up on cues, make eye contact, all the things, and then there is that realization of, "That's not really who I am." MEGAN NEFF: Yeah, yeah. PATRICK CASALE: Then there's the piece of, "Will I ever be that person again?" Part for me that feels comforting is like the answer that I have when I ask myself that is like, I don't think I want to go back to that life. MEGAN NEFF: Yeah, yeah. And this is where I think there's a lot of identity and relational shifts that happen when a later in life diagnosed person is diagnosed and starts unmasking. Because if we're burying an old part of us, a masked part of us, if that's who we've been in our key relationships, like, especially, if we're in partnerships and marriages, that's going to have a, like, significant impact of like, you're getting to re-know yourself, and then your partner and your family's really getting to know you. This would be interesting. I would be curious about separations and divorces, like the year or two after diagnosis for an adult. PATRICK CASALE: Yeah, yeah, just because of who someone starts to embrace in terms of their identity. And whether or not the other partner can accept or if it even feels like the same person. And yeah that would be very interesting. MEGAN NEFF: How did your wife, like, how was this journey for the two of you? PATRICK CASALE: Yeah, I was going to say that it sounds like both of us are fortunate to have partners where they were pretty accepting of this experience. And that's how my wife was. And she was one of the groups of people in my life who's just like, I don't think she had a word for it. Maybe like, I remember calling her, I had gotten the results, I was in New York speaking at a conference and visiting family, which, you know, is a thing. And I just remember calling her and being like, really upset, and really emotional, which was not my baseline. And I just remember her saying, like, "Yeah, I don't think I had a word for this. But I think I knew this about you. Like, that's who you are. Like, this is how you act and this is how you interact. I know what you struggle with." But, you know, I think that just goes to say that I've felt comfortable enough around her to be my true self and to be able to unmask pretty regularly. And I think that felt complicated, though. I think it felt like, I don't think it felt like dismissal, because that's not how it felt. But it was just simply like, "Yeah, this is just our lives." And I was like, "Yeah, but everything feels so much more complicated for me now." And she's listened to other episodes I've done on autism diagnosis and how I experience social interactions and social gatherings. I know it can be upsetting, because she's from a South large black Southern family. [CROSSTALK 00:30:40], lots of family interaction, lots of gatherings, it's loud, I love them. It's challenging. And my ideal holiday is like, let's get the fuck away from our families, and her ideal holidays are let's spend as much time with them as possible. So, it's been great to communicate, this is what I need and this is what I can endure. Because you have to, I have to, I don't want to generalize, I have to build up these, like, reserves of energy for our experience and situations that are going to be loud, are going to be chaotic, there's going to be a lot of stimulation. Like, I have to go into it knowing that I am going to leave it depleted and paying for it for days, if not weeks at a time. So, it's still a work in progress. Andi think they're still figuring out, you know, how to best make partnership work. And you know, my wife is undiagnosed ADHD, but she's self-diagnosed herself. And I would agree with the diagnosis. There's also communication misfires, like mishaps where I'm receiving information differently than she's putting it out to me or the communication is just missing, because of the way we interpret communication. And they're oftentimes where she'll say something, and I think I hear it, and I have to say, "What did you say?" And she's like, "See, you're not listening again." It's just about processing it. So, still work in progress, but happily able to say that at least I know that there isn't shame or judgment here. And that feels really supportive. What about you? You know, you mentioned you kind of knew while going through your daughter's journey. MEGAN NEFF: Yeah, I mean, the first time I brought it up to Luke he was like, "That doesn't sound right, because I'm the one who's always craving like emotional intensity, and I'm the therapist." And then as I was doing more research and like, kind of unpacking, like, okay, here's what I found, here's my thinking, he was like, "Actually, that makes a lot of sense." We met in college. He was like, "You know I was drawn to how direct you are." He comes from a more like, indirect culture and family. And so, he's like, "Yeah, I think I was drawn to how direct you are. But at times, I did think it was kind of strange, like how direct you are." But it's also I think, part of what he found attractive about me back then. And so, it was interesting even to review our history of what he was drawn to about me, a lot of what he was drawn to about me like my intellectualism, my direct nature, was very passionate, as you can imagine. At the time, gosh, this could be a whole episode. So, my husband and I both grew up fundamentalist. Neither of us are in that tradition at all anymore. But I channeled a lot of my passion and direct nature toward Jesus, which was a socially acceptable thing to do as a fundamentalist girl. It was the only way to be a direct girl. And I would still get in trouble for being too direct, but it was all in the name of like this kind of social justice Jesus. And so, I think that was part of how he was experiencing my directness. But yeah, so I think for him it helped answer things. I think it'd be interesting to ask him, I think, there's probably a similar grief and relief of even things like, you know, when he'd come up and touch me I would shiver physically. And I think we're both confused by that of am I rejecting it? Like, why am I rejecting his touch? And I think for him to have a narrative of, "Oh, unexpected touch." It's not me that she's rejecting, it's unexpected touch. Like, I think little things like that. And actually, that's not a little thing, touch is a big thing in a marriage, were really helpful for him. But then again, there's grief of, I think there are things that he would probably enjoy having in a marriage that we don't have and probably won't ever have, like, the flirtatious banter, the impromptu touch. Like, there are things…. and if anything, I feel like I've been trying to give him permission of like, you know, you can grieve this too, because I'm doing my grief around it. PATRICK CASALE: Yeah, there's so many layers to this. And I can relate with the impromptu unexpected touch too, because my wife, Arielle will say the same thing. Like, "You shiver when I touch you." Or like, I think she's somewhat gotten more accepting of that. But like you just said, there's still got to be that grief of like, this is not something that can really be sustainable in our relationship and it's not something that I can provide or ever just get comfortable with. Like, that's just not something that can happen. So, yeah, it's really layered. And I'll take it a step further, you know, with diagnosis stories, like, family members too, when they when you start to talk about it openly and come out, and just announce, or talk with people about your diagnosis, or your experience, or you might even start reflecting on your childhood experiences more often, because you're starting to put the associations together. And I've never talked about it with my dad. Like, we haven't had a single conversation that's involved or included the word autism whatsoever. I know he sees my podcast, I know he sees my stuff. So, never have we talked about- MEGAN NEFF: So, he knows, but it's not talked about. PATRICK CASALE: Yeah, which is- MEGAN NEFF: Oh, interesting. PATRICK CASALE: …which is most of everything in our dynamic. But my mom, on the other hand, who is a retired therapist was like, centering it around her and her parenting, "What did I miss? How did I miss this? "Like, "No, I don't think this could be accurate. No, I didn't notice this." And I'm like, "I'm not asking you for any of this right now. You know, like, it's not what I need from you, is how this makes you feel in terms of your parenting or lack thereof." So, it's interesting to see how people receive information about something that is life-changing, because it's different. And it just shows up in different ways. And it can show up for their grief, or their own frustration, or their own ableism, or whatever's happening behind the scenes, but really is a complicated, complicated subject. And I can see why a lot of people don't want to pursue diagnosis, too. MEGAN NEFF: Oh, absolutely, absolutely. And I think complicating it is, you know, autism is so genetic that, typically, when you're like, disclosing a diagnosis there's typically implications for some of the people you're communicating that to. And so, I think that adds another layer of complication as well, because either you seem totally normal to them, because the things you're experiencing they've always experienced. But also, there can be really strong internalized ableism when we're undiagnosed and older, and gone through our life and diagnosed. And so, I think all of that can get stirred up unconsciously and consciously, for the family members that are being told this. I mean, yeah, it is self-disclosure and family is really complicated really quickly. PATRICK CASALE: Yep, yep. And that association, you know, genetically to say then, there can be so much internalized shame to any sort of diagnosis, not just in autism, ADHD diagnosis, but whenever we're talking about any condition, disabling condition, especially, people have their own histories and just lived experiences with how they feel about certain terminology too. And I know my association. You know, when I got diagnosed was I used to work in some group homes for people with developmental disabilities, intellectual developmental disabilities in New York when I was getting out of college. And my immediate association was like, "Yeah, but like, I don't struggle with any of these things." Which is my own ableism showing up at that time. But that was my first association when hearing like, "You're autistic?" We can have a whole… and I think we have this on the list a whole conversation about how could you be autistic because of A, B, C, D, E, F & G and you're too, "High functioning for that label." Which I hate that fucking label too. MEGAN NEFF: Yeah, yeah, yeah. I think I've maybe shared this story with you before. So, maybe five years before identification, first year in the doctoral program, I was taking the MCMI, which is a common personality assessment, and it gives you a printout of future like diagnoses to look into further. And I think there're maybe two on my printout, autism spectrum disorder, and then I actually can't remember the other one. And I remember the moment of looking at that and being like, "What the hell? Like, no way." And exactly what you're saying, like, a ton of ableist associations came to my mind in that moment of like, "There's no way that's me." And sometimes it's helpful for me to go back and remember that moment, because I have done so much deconstruction, that I think I cannot have as much patience for people who are earlier in their journey of addressing ableism. So, being able to point back to be like, "Oh, my gosh, there was so much ableism in me that was showing up in that moment." It's helpful for me to be able to kind of access empathy for other people who are newer to this journey. PATRICK CASALE: Yeah, absolutely. I mean, this is a journey that even as a mental health worker, and, you know, I'm still learning all the time. Hell, I'm still learning [CROSSTALK 00:41:54]. MEGAN NEFF: Oh, yeah. I still have ableism pop up left and right. Yeah, yeah. PATRICK CASALE: Because it's just so deeply rooted and conditioned, in essence, to society, too, and doing the work to deconstruct is crucial, but that doesn't mean that there are not moments where I'm like, "I need to walk that back." Or like, "That's not the phrase I wanted to use there and I need to really work on, you know, my vocabulary, and wording too." And I think it's just also acknowledging that too, and not just [INDISCERNIBLE 00:42:27]- MEGAN NEFF: Yeah, yeah. PATRICK CASALE: …putting it or scraping it under the rug, you know, but… MEGAN NEFF: Yeah, or even like who's included in the conversations. Like, I just did a webinar on alexithymia last week. And as I was reviewing the slides, I was like, I was seeing my bias of, I'm really primarily speaking about autistic people and ADHD people who don't have co-occurring intellectual disabilities and who are speaking, partly, because the research on alexithymia is geared toward that population, but partly because of my own bias. And because that's the world I subjectively know, it's primarily the world I work in. But it was definitely a moment of like, I've got a lot to do to learn and incorporate, because I'm filtering a lot of the research and resources I'm engaging with through this bias. PATRICK CASALE: For sure, it's a great point. I think it's definitely worthy of a probably more conversation as we go. And you're heavy in the research side, too, and the clinical side, and I think it's important for us to just continue to have these conversations and address them as well. And, heavy stuff. MEGAN NEFF: Yeah, yeah. I don't know if I'm reading you right, but it looks… are you trying to find a natural way to segue to a conclusion, but also, we've been talking about heavy stuff. So, are you kind of like, oh, fuck, like, okay, we've talked about heavy stuff now we have to transition to ending. Is that what's happening for you right now? PATRICK CASALE: I told you that if we recorded routinely that we'd start picking up on each other's like, tales even more than we already do. Yeah, absolutely. I'm like, I'm very hyper-aware. We talked about my internal clock last week about like, Hey, we're getting close to time. Like, we've got stuff that we have to do at the next hour. And I'm also thinking, "Damn this is heavy." And I think every single one of these conversations is probably going to feel similarly. And then how do we wrap that up? MEGAN NEFF: Yeah, yeah. Like, the energy put in social transitions. One of the metaphors I used early with my therapist is I feel like I don't have social ligaments, like the things that help you be flexible, so much energy when we need to, like, socially transition. So yeah, like that transition of, okay, we're kind of in a heavy space. Now, we have to do our awkward goodbye. That takes a lot of energy. PATRICK CASALE: It does. And you know, I'm trying to be aware of where you're at too, energy-wise. And I'm like, I don't want to transition if we're not ready to transition. But I like that, the feeling of like [CROSSTALK 00:45:22]- MEGAN NEFF: …talk about it, instead of like, trying to read it's like, I like that we're having a conversation about what was happening, instead of trying to, like, read nonverbals and… PATRICK CASALE: Absolutely. So, I'm grateful for you for naming that. And that is where we are going to transition, because we're going to have a lot more of these conversations too. And I think we want to hear from those of you listening about your stories and about your diagnosis journey so that we can be there alongside you too, and just provide resources as well. And I hope this felt supportive and affirmative. And, you know, just sharing a little glimpse about who Megan and I are and how we've gotten to where we are today. I think it's a really good look into that window for sure. So, I appreciate everyone listening and I'm struggling right now. We are going to have new episodes coming out every single week of the Divergent Conversations Podcast on all major platforms. You can like, download, subscribe, and share. Megan, you want to add anything before we go? MEGAN NEFF: Nope. PATRICK CASALE: All right, then. Thanks for listening. Goodbye.
Do you ever find yourself in a state of paralyzing burnout that can happen even when you're doing activities that you enjoy? Have you ever taken a vacation to fight the fatigue of life only to find that your post-vacation burnout-recovery state is reversed sooner and more severely than others? Do you wonder how you can reduce your burnout in a way that works and actually lasts? Then this episode is for you. Top 3 reasons to listen to this episode: Understand what autistic burnout looks like and how it differs from the burnout that might be experienced from things like work. Identify ways to provide self-care when you are experiencing autistic burnout, as well as how to incorporate sensory soothers. Learn how autistic burnout and ADHD can affect each other. Autistic burnout can be a very tiring and frustrating experience. It can have a significant impact on your productivity, relationships, and overall quality of life. Therefore, it is important to understand what it is, how it affects you, and how to deal with it effectively. By doing so, you can preserve your energy and improve your quality of life. To cope with autistic burnout, it is crucial to identify the activities or practices that help you recharge and calm your senses. By incorporating these practices into your daily routine, you can manage your energy levels and reduce the likelihood of burnout. Additional Resources: Check out Dora M. Raymaker's study on autistic burnout: “Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew: Defining Autistic Burnout." Megan's Resources for Autism and Burnout: How to Spot Autistic Burnout: https://neurodivergentinsights.com/blog/autistic-burnout-symptoms What Causes Autistic Burnout: https://neurodivergentinsights.com/blog/what-causes-autistic-burnout Autistic Burnout Recovery: https://neurodivergentinsights.com/blog/autistic-burnout-recovery Autistic Burnout Workbook: https://neurodivergentinsights.com/neurodivergentstore/p/autistic-burnout-guide-and-worksheets Transcript PATRICK CASALE: Hey everyone, you are listening to another episode of Divergent Conversations podcast. I'm your co-host, Patrick Casale. MEGAN NEFF: And I'm Dr. Neff. PATRICK CASALE: And we are going to talk about autistic burnout today, because Megan and I are both in it MEGAN NEFF: This will make for an interesting conversation [CROSSTALK 00:00:22]. PATRICK CASALE: All these conversations are and we're going to look at each other and say, "Did that feel too fucking dark again?" But in reality, I think, that's the purpose here. So, I'm in it for sure. And, you know, Megan, I'm always going to defer to you when we're talking clinically, because I think you're by far the expert when it comes to all the research that you do and all the effort that you put in. So, what is autistic burnout for all of our listeners who may not really have a good grasp of that? MEGAN NEFF: Yeah, no, that's a great question. And we should definitely add a link to this in the notes. I think her first name is Dana Ashlie? So, I think, I actually don't know her pronouns. So, I shouldn't assume her. But Dana Raymaker. They did a fantastic article that is the first to clinically define and research autistic burnout. It's a qualitative study. For people who don't know what that is, I really like qualitative studies, because it stays with people's stories. So, they interviewed like 19 autistic people. 10 of them were women, which is rare for an autistic study, foreword genderqueer or gender, not in the binary, which is, again, fantastic for a study on autism. And then, I think there were like six or seven men. So, first of all, I love a study that's representing autism from a more diverse lens, gender-speaking. And they found some themes, I realize I'm doing the very autistic, like, [INDISCERNIBLE 00:02:07] like, here's the design of the study, here's the people versus just like, what is autistic burnout? Okay, I'm zooming back out. PATRICK CASALE: It's cool, you're fun. MEGAN NEFF: So, okay, fantastic study, people should read it and there's a lot of kind of versions of it that I think it's a more accessible read than some peer-reviewed studies. So, they interviewed folks and listened for themes. That's how you do qualitative study, you listen for themes and you pull those out. Their definition of autistic burnout is, it's defined by three features, chronic exhaustion, this is emotional, this is physical, this is all the domains of exhaustion that are possible. It is a loss of skills. So, particularly, executive functioning skills, speaking skills. I know for me that is a big one, my ability to speak coherently or speak at all is really impacted by burnout. And then sensory sensitivities increase during burnout. So, those are the three core features. They define it as three months or longer. Honestly, I think just when you're defining anything clinically you have to kind of put a timeframe around it. But I'm curious about that three months mark, why that's there. And they show how it really is distinct from like, you know, culture talks a lot about occupational burnout, that this really is distinct from that. It's also distinct from depression. Now, it often leads to depression, but it is distinct from depression. I think this is such an important thing for mental health therapists to understand, because this is one of the leading pathways to suicidality for autistic people. And mental health therapists often don't understand burnout. They think it's depression, they treat it like depression, but it needs a different support, different treatment. It's also more common among high maskers. They identified that masking was one of the huge factors contributing, which makes so much sense to me. So, I think this really sets people up to be misunderstood by their therapist, if their therapist not aware of high masking autism, not aware of suicidality. Okay, I'll stop there, because I've done a bit of a little info. But yeah, that's the clinical definition of autistic burnout. PATRICK CASALE: I love this, because this is Megan and my process where we're obviously processing information very differently, and then, relaying it very differently, too. And I think it's important to have your info dumps and your perspectives, because people need to know that component too, right? Like, this is the definition, this is, clinically speaking, what this looks like. And I think so often we're you using the term burnout in society in general, right? And you mentioned it was more related, workforce-related. Like, hey, yeah, we get it, work is stressful, and it's hard, and you're overworked and underpaid, and all the things that come with it, and then that leads to burnout. But this is different. And I think main component that you mentioned really set that apart. And, I mean, we can go layer upon layer here, where it's like, what about autistic people in the workplace experiencing both like workplace burnout, autism burnout, etc. But in reality, like, it gets missed a lot. And clinically speaking, for sure, but also in friend groups and society in general. Like, the general advice around burnout is like, take a break, and like, go on vacation, or like, take a week off from work, and you'll be okay. And that is not what we're talking about here. I mean, even in that situation, a week off doesn't do it justice, but like… MEGAN NEFF: Right, right? Because then we're returning to the life that's burning us out. And that's what's different about, you know, allistic person, or neurotypical person who's experiencing burnout. They often can go through a recovery period, and then, like, bounce back. But for the autistic person, like, what I see a lot, what I've experienced a lot into the last two years when I deeply restructured my life it's like burnout, go back to my normal, but then I burnout again, because it was the normal life that was burning me out. And so, that kind of bounced back and forth between burnout, like somewhat functional burnout, functional burnout, functional… And so, there isn't that idea of like bouncing back to some idea of normal. Often, it's not the case when we're talking about autistic burnout. PATRICK CASALE: I love that you made that distinction, because that's an important one here. And for the autistic person who's experiencing autistic burnout, when you said a minimum of three months, right? I know we're talking clinically speaking, this could be going on for years, this could be going on for- MEGAN NEFF: Oh, yeah. PATRICK CASALE: …lifetimes. MEGAN NEFF: Totally, totally. PATRICK CASALE: You and I DM each other on Instagram a lot, like, and I did it before we started recording and I wish we were recording. I'm glad you kind of pointed that out. I asked you like, "Hey, how are you doing today?" And that's such a like conditioned question. You know, like, I'm supposed to introduce that way. And you were like, "I don't know. Like, I'm kind of here." Right? Like… MEGAN NEFF: Yeah, I do wish we were recording that moment of… And then, I think I told you. "No, that's a terrible question." Which is funny. That's actually how I respond to that question now. I mean, with you, I'm obviously really comfortable and will be like, "Yoh, that's a terrible question. Why you're asking me that neurotypical…." But with people who maybe aren't as an autistic culture, I will ask them to clarify like, what part of my life are you asking about? Because it's such a complex, like, what bucket in my life are we talking about when you ask me that? PATRICK CASALE: One, I love that. We are comfortable enough to just name it in our interaction. And two, I think that's such a good fucking point. And I was talking to a caller yesterday about like, fluffing up emails of like, I kind of get straight to the point, you know, ask you what I need to ask you, or give you the information that you need, or whatever, and just be done with it. But then I always find myself, like, inserting a smiley face, or a lol, or like punctuation mark to emphasize my point, or like going back and copying and pasting, like, "Hey, how are you today, I hope all is well." Then jumping into the point that I actually want to make, and even operating from that neurotypical lens and expectation of communication leads to burnout, because that [CROSSTALK 00:09:09]- MEGAN NEFF: Oh, yeah. PATRICK CASALE: …energy to constantly think about how you are responding to things and how you're being received. MEGAN NEFF: Yep, yep, it takes that extra step of, I do the same thing. I read an email, and then I go back, and I like I warm it up. It's like, okay, I need to, like, have some sort of intro. And, oh, I shouldn't just say the thing. So, yeah, that whole extra step. And it is, it's prefrontal cortex work every time we're doing that. We do it in email, we do in conversation. So, all of these things that are happening on a more intuitive level for other people that we do when we mask, you know, that's all that prefrontal cortex, which is part of why it makes so much sense to me that masking is such a significant factor when it comes to burnout. PATRICK CASALE: Yeah, just think about how much energy is being spent all the time. And then, how much is being absorbed all the time? And the differentiation there between like, once you start to get into that burnout place where you mentioned, a lot of it is sensory and overstimulation. I'll give you an example. I was hosting a retreat that I was running a couple of weeks ago in New Orleans, and you know, I'm recovering from surgery, my energy is low, my capacity is low, my distress tolerance is already low. It hit me in a moment where I was sitting in the room with 20 people, they're all socializing, they're all having fun, but I'm picking up on like every word that everyone is saying. It's starting to get louder. And then, every noise is starting to like become more and more irritating. And the temperature is getting really hot. And I'm starting to find myself like stemming and like, needing the need to just regulate myself. And I just realized in that moment, like, you're burnt out already, and you haven't even started what you're embarking upon this year. And combined surgery recovery with, you know, the autistic burnout piece of just the realization of when you're in that moment your distress tolerance skills kind of dissipate. Like, your executive functioning, like you mentioned, just starts to crumble. And that was the first time for me, and I'm going to be really vulnerable here and honest, for our listeners, like, where I realized, I am so much closer to feeling that I am disabled or unable to function. And that world that sees me does not see it, because of how much energy and effort goes into doing whatever I'm doing. And I had this major fucking grief moment and that moment where I was like, not only am I recognizing this, but I also realized like, I've created this thing in my business that am I really not capable of actually doing? That was really hard to try to process in that moment. MEGAN NEFF: It sounds like such a claustrophobic moment when you describe, like being in that moment, seeing what you had to do in front of you. And then, like the limits you are encountering in your body? PATRICK CASALE: Yeah, yeah, it was hard. And you were one of the first people I thought about messaging that to, because I was like, "I need to talk to someone about this who kind of understands what I'm talking about." MEGAN NEFF: Yeah. PATRICK CASALE: It's just such a challenge in that moment. And all you want to do is like retreat, and turn off the world, and disappear from it. And I know that that is a way to sensory soothe, too, but when you're expected to be participating, or involved, or hosting, or coaching, or whatever the responsibility is, it becomes too much. MEGAN NEFF: I know for me in those moments there's a narrative that kicks in, I should be able to push through, what is wrong with me that I can't push through? Was that part of it, too? PATRICK CASALE: Oh, absolutely. It was like, that was coming up, "You're letting your co-host and business partner down, because you're not pulling your weight. Why can't you just do the thing that you've done before? Clearly, something is wrong with you." And, "You're not able to do this thing." I like having fucking limitations placed upon what I can do. MEGAN NEFF: Oh, my gosh, right? Yeah, yeah. I mean, that's something I've thought so much about the last two or three years, is the limits and how that is for me, claustrophobic, that is the word for it. I feel claustrophobic when I encounter the limits in my body. And they feel like they shouldn't be there. Like, even when I am, like my head knows, right? Like, the social disability model. And autism is a disability, and, like, I know these things, but in those moments, like, my felt experience is still, there's something wrong with you that you can't push through. And I'm not attributing it to being disabled. I'm not attributing it to being autistic, because it's been so baked into me my whole life that you should be able to do what others can do, you should be able to push through. Why are you making this so hard? It's in your head. Like, all those narratives are still baked into my body. PATRICK CASALE: Yeah. When that's coming up for you, I mean, how are you managing that? How are you kind of getting through those moments, because they can be so painful too and so debilitating? MEGAN NEFF: Yeah, yeah. I mean, so I'll answer two ways. On one level, I think I've restructured my life to reduce those moments, right? It's interesting sometimes when I disclose this to people, people seem surprised. And I realize like, "Oh yeah, if you encountered me digitally you might not realize this." Like, I rarely leave my house. I mean, I'll go on walks. But I rarely see people, I rarely interact with people in body form, I rarely commit to things where I know I might encounter that claustrophobic, like, I've got a pretty fierce-like autonomy demand avoidance streak going on. So, one, I've structured my life, I think, to avoid those moments. Last year, I was adjunct teaching at a university leading like a clinical team once a week. And it was three hours, eight students, but I'd come home exhausted, and be so exhausted the next day. And I stopped doing that this year. So, that'd be an example of I have restructured my life to avoid those painful moments. And then, what do I do when I am encountering those moments? Like, I'm very meta in how I talk to myself. So, I'll talk myself through it of like, I'll identify the scripts that are playing, and I'll remind myself of the scripts I know that are true, but that I don't yet, like they're not living in my body yet. So, I'll do a lot of that kind of mindful naming of scripts in the way I talk to myself and remind myself. And then, I'll check in of like, what do I need? And I'm typically able to get myself some version of what I need. PATRICK CASALE: Yeah, I love that answer. And, you know, I think the ability to restructure is wonderful. And I also think that for us, we've talked about this before, it's also a privilege that we have [CROSSTALK 00:16:57]. MEGAN NEFF: Absolutely, absolutely, yeah. PATRICK CASALE: And I start thinking about, like, what if you don't have the ability to restructure and really be mindful of how your days are laid out and who you're interacting with, and when, and having control and autonomy over your situation like that? MEGAN NEFF: I'm so glad you brought the privilege piece up, because I think this is such an integral part of the autistic burnout pieces, is I'm very aware, I've been able to restructure my life because of all of my privileges. When I started my business, at that point, we were dependent on my spouse's income. So, there's economic privilege. I have a doctorate. So, there's a lot of education that gives me a lot of mobility in the professional space. So, I feel that when I work with clients in burnout, you know, whether they're in middle of graduate school, or due to socio-economic barriers, or name any of the barriers, cannot restructure their life, I think that's when I as a therapist feel the most stuck of like, there are systemic issues here, there are like neurobiological vulnerabilities here, there's very little I can say. Like, yes, we can talk about their sensory profile and we can talk about how to recover. But at the end of the day, there's these very real systemic blocks that we're running into that I have no control of and that feels claustrophobic. That's like my word of the day, apparently. I feel very stuck when I'm in that place with clients. PATRICK CASALE: Yeah, yeah. That's a great point, because there's nothing as the therapist that you can do to change that situation or their experiences, or responsibilities, even. And it's so challenging, because the system is not designed for folks who can't fit into that neurotypical model, especially, in the workforce. It's just, 99% of it just doesn't feel well-suited or set up with our needs in mind. MEGAN NEFF: And then, also, thinking about kind of supports for disabled people of like, when someone… when they're functioning, there's issues with that word, but it… Okay, when they're functioning [CROSSTALK 00:19:34]. Yeah, when their function ebbs and flows, like, we don't really have societal support for people like that. I think, individually, we don't know what to do with ourselves when we're someone who's, you know, I can go from, like, speaking on a stage to be non-speaking and laying flat on the couch the next day. Like, there's not really a template for folks of us who have such a range, because there's so many spikes, and there's so many valleys, and yeah, there's not great supports built-in, we have to kind of figure them out ourselves. Which again, if you have privilege, you're able to do that. PATRICK CASALE: Yeah, yeah. And I think that's the paradox here, right? Is like, but even with that being said, to share from our own experiences of recognizing our privilege, but also recognizing that we are currently stuck or feeling like we're in our own versions of our own autistic burnout of, we still have responsibilities to take care of, right? Like, I know, you have your kiddos, I have two businesses to run, those responsibilities don't go away. And that means that I have to get really laser-focused, and really intentional about what I'm saying yes to, and what I'm not responding to. And for the people pleasers and us, like myself, who I feel like I'm a recovering people pleaser, I feel like shutting off the world, there's this almost push pole guilt feeling of like not responding to people. And it feels good to have people in your life where you can just tell them very honestly, like, "I can't do this right now, this is all I'm capable of doing." And for me, that typically looks like turning all the lights off and laying in bed, watching something that's mindless over, and over, and over again, and not able to do anything else. But there's a cost there too, with like, partnerships, and communication, and just connection. But that's really all I can do. And coming back from New Orleans, I laid in bed for almost a week and a half. Like, if I wasn't doing one or two things a day that I had built in, that was all I could do. MEGAN NEFF: So, I'm having a new thought listening to you talk and like the picture of you in a room, lights off, week and a half, and knowing you, knowing that like, yes, Game of Thrones like is enlivening for you, but also knowing that you do thrive on relationship and connection. Okay, so here's the thought I'm having. What if the recovery from autistic burnout is depressing, like in the sense of like, isolation, darkness? Like, what a brutal Catch-22 if what we need for our bodies to recover are also things that disconnect us and like, slow our bodies down to a degree that we're then losing connection with the things that give our life meaning and joy. And yeah, I don't know. Yeah, like, can I ask how are you faring after a week and a half of like dark room recovery? PATRICK CASALE: Yeah, one, I think that's a wonderful point that you just pointed out, like, you're spot on. The things that we need may also be the things that do lead to that depressive state. So, it is that Catch-22. And you and I are both ADHD. The ADHD parts of me are like, "This is fucking terrible. Like, laying here, doing nothing, not creating, not feeling energized, like not feeling like there's a spark or something to get excited about." And the autistic part wins every time, because it's like, waving the white flag, right? Of like, I can't. Like, I can't do more than I can do right now. But to answer your question, how am I doing now? I still feel it and I can't connect the dots between what is still recovery from surgery and what is also this autistic burnout piece. I think that they're both kind of intensifying the other. Does that make sense? Like- MEGAN NEFF: Oh, absolutely. PATRICK CASALE: I just feel like if I'm typically running on like at 100% right now I feel like I'm at like 20%. So, it's pretty depleted. And then, the question becomes like, how do you replenish that to even get to a place where you can at least get through the day and the tasks that you've created for yourself? I think that's a Catch-22 of being an autistic entrepreneur, because, in New Orleans, I was saying thinking, "Okay, you're going to Costa Rica to speak at a conference." Which I actually backed out of today and I feel very proud of myself for doing, "And then you're hosting a retreat in Ireland." And I just kept thinking, "I can't do this stuff. Like, this is my world right now." And that's why I think the next month going into February, you know, I don't know when we're going to publish this episode, just for frame of reference, like, I'm going to be doing very little until I leave to go to Ireland in March because I want to conserve and like, regenerate, and replenish as much energy as I can. But here's the Catch-22 to that Megan, Ireland will then take all of it and more. So, you're playing this catch up game all the fucking time of like, how do I replenish? How do I recharge if I'm constantly depleting? MEGAN NEFF: I wonder if, not necessarily better, but an alternative term for demand avoidance would be like energy scarcity mindset of, like demand avoidance is so logical, based on what you're just describing of you have to store up energy for six weeks to go do a 10-day thing and then you have to recover from it. Yeah, energy scarcity mode. Can we make that a thing? PATRICK CASALE: Yeah, I think we could definitely make that a thing. I think we can do an episode on that. I mean, I think you're so right, because the demand avoidance, like you said, is very logical. When you lay it all out [INDISCERNIBLE 00:26:31]. Of course, I'm going to avoid doing this. But in reality, it's like, I'm just so aware of how much energy it is going to take and how much I'm going to be depleted, that you have to go into that scarcity mode of like, I can't give it anywhere else, because there's nowhere else to give it or to receive it. MEGAN NEFF: Yeah, yeah. I'm thinking of, like, when I get an alert on my, you know, iPhone, or like, Apple Watch of like, you have low battery, would you like to go into low power mode? Where it's like, okay, all of the things that are draining power, we're going to turn it off. It's kind of like living in low-power mode. And then when that becomes your life, I think it's hard to not be depressed. PATRICK CASALE: Yep, because that's really when you're in that mode, where, okay, you turn it all off, right? And you recognize that you're there or you're very aware of what's going on. But then you can't say yes to the things that do bring you satisfaction and joy, because you're depressed, and you feel rundown, and you feel antisocial. Like, I feel like I don't want to interact with people. And that's a good indicator for someone like myself to acknowledge like, this is where I'm at, because I thrive on the connection that I have. And for me to want to avoid that at all costs is usually a very good indication of like, okay, we've arrived here, and this is where we're at. MEGAN NEFF: I love that you have a litmus test of like, this is my gauge of I know kind of where my power mode's at. For you, it's kind of how you respond to connections. For me, it's how I respond to ideas or books. And this was before I realized I was autistic. I've always been an avid reader. I love philosophy. I love kind of existential deep books and reading, and playing with ideas. When I can't pick up a book it's like, "Oh, my goodness, what is wrong with me?" And partly because I've had so much chronic fatigue, I could pretty much always sit on the couch and read a book. But those moments in my life where I couldn't pick up a book, I couldn't listen to a podcast that had ideas, I couldn't take in any new ideas, that was my litmus test. Pronunciation is a hard thing for me. You'll realize that by doing a podcast with me. I'm speaking make up words all the time. But yeah, so I think it's really helpful for people when they know what their litmus test, however you say that word is of, oh, this is a sign, I'm entering low power mode, I'm entering burnout. PATRICK CASALE: I love that you just named that. Are you in that mode right now where books and new ideas are just [INDISCERNIBLE 00:29:21]. MEGAN NEFF: So, I actually can't tell. I was thinking about that as we started like, okay, am I in autistic burnout, or is this like winter chronic fatigue? And I think I've had chronic fatigue, essentially, since I had kids. So, it's hard for me to tease out what is burnout, what is chronic fatigue. You know, I make a workbook a month, which is a lot of work, but I've been able, right now I'm working on one about just how we relate to our thoughts and cognitions, and I've been able to really enjoy learning about some of these concepts and reworking them to the fact that I'm able to enjoy parts of it. To me, I'm like, okay, I'm not at completely, like, burnout mode. But other areas of my life are definitely, I can tell I'm in burnout mode. So, I would say, I'm like, yeah, 50%. If you're at 20%, I would say I'm at 50%, because I still have things that can spark my curiosity. When I'm in deep burnout nothing sparks my curiosity. PATRICK CASALE: And I think that's the exact point right there, that's it. You just nailed it. Something can spark your curiosity, but if it can't that is a great indication that that is where you are, that you are in autistic burnout. And I want all of you listening to think about what are the things that spark your curiosity? What are the things that you feel really, like, energized by and passionate about, interested in? If nothing is coming to mind right now, if you're feeling any of the things that Megan and I are talking about, could be a very good indication that that's where you're at, as well. And I think one thing that we're not touching on and that's important to name too, is I think, when you are in autistic burnout substance use is going to ramp up, drastically. MEGAN NEFF: Absolutely, absolutely. PATRICK CASALE: And I noticed that for me that I was out of a fucking retreat in New Orleans, which is a city of debauchery and surrounded by 20 people that I had to be on for the entire time, so alcohol is my best friend at that moment, because I was messaging you about that of like, the socializing piece, the dropping into the, "Socially [CROSSTALK 00:31:37]" Right? Of being able to interact with people, to be able. To have some semblance of small talk alcohol has to be the lubricant for me. And acknowledging that is the realization of like, you have to pay attention to that for yourselves, for any of you who are listening, like, whatever the substance of choice or process of choice is, because it can get dangerous very quickly, and it can get out of hand very, very quickly, too. MEGAN NEFF: Yeah, yeah, yeah. So, this is interesting. This isn't something I've talked too much about. I hope to talk more about, because I think it's a really important part of being neurodivergent, of burnout. But I have struggled with disordered relationship to alcohol in the past, and particularly, around burnout. So, it's interesting. I'm curious about… there's something I've noticed. So, my spouse and I respond really different to alcohol. For me, it energizes me. For them, he's like ready to go to sleep after a glass or two of wine, or beer, or whatever it is. I noticed among autistic people and this is totally anecdotal, I noticed that it tends to be more energizing for them, which I'm really curious about. So, for me, I often used it to energize and as like liquid dopamine. So, if I had papers to grade or some tedious task, and I was in burnout, then I'd be like, "Oh, well, I'll pair it with some wine tonight." And that became… like, because I could not mobilize. And it was before I knew about ADHD and autism, so I had no like medication support around dopamine and stimulants. So, I think whether it's socializing, because it takes a sensory edge off, and it makes socializing easier, or whether it's to try and motivate us, or because it gives us this kind of faux sense of regulation and energy, I think there's so many reasons we're really vulnerable to, particularly, I would say alcohol during burn out. PATRICK CASALE: I agree 100% and with everything you just said, including the energizing component. And you know, there's such a cost to it too, because you don't sleep well, and then you throw in alcohol into the mix. And I mean, it's just so challenging. So, really trying to, you know, figure out, for our listeners, too, you do a great job, Megan, I want to highlight this of like, really posting valuable, tangible content where you can put it into motion immediately and start putting it into place. And you talk about sensory soothing a lot, and you talk about skills and techniques to kind of manage burnout when you're in it. And I'm just curious about things that our listeners who may not be mental health professionals and have access to the things that we do, that they can do when they're experiencing some of this stuff. MEGAN NEFF: Yeah, yeah. I've got cascading thoughts happening. So, on one, I think, identifying those self-soothers that are like faux self-soothers. Like, they're self-soothing in the moment, but they're actually making your burnout worse. So, things like alcohol use or other substance use. I would think identifying those and really targeting those things, because those create a cycle, a loop that then perpetuate the burnout. And I think for a lot of people working with a medical provider or mental health therapist when they're targeting those self-soothers that are actually in the long run causing more harm, it can be really helpful to work with someone around those things. And then, yeah, I talk about sensory detox a lot, sensory soothing. You have to have some interoceptive awareness to be able to identify when you're sensory overloaded and then soothe yourself. So, sometimes you have to actually go back a few steps and kind of work on interoceptive awareness, which there's some kind of simple mindfulness. That sounds like a big thing, work on interoceptive awareness, but there's simple mindfulness things. Like, I have a smoothie right here, I can grab my smoothie, I can focus on the sensation of the coldness on my hand and what that feels like, I can do that for 10 seconds while I drink my morning smoothie. And by mindfully attending to the sensory experience, putting my smoothie down, noticing the difference in my hand, that's interoceptive awareness builder right there. And it's not an extra I have to do in my day, it's when I'm grabbing my coffee or my smoothie. Wow, I'm like diverging all over the place, so interceptive awareness, sensory soothers, like using all the kinds of sensory accommodations that can be helpful, and it often, I think, takes a lot of experimenting, especially, for later in life diagnosed people and high maskers who maybe are so disassociated from the body by the time they get to diagnosis or identification. It takes a lot of experimenting to figure out what is soothing for my body? What does my body, like? What doesn't it like? So, giving yourself a lot of kind of play space to figure that out. Rest, there's lots and lots of rest, dropping demands, and those can be small. Like, sometimes we think, "Well, I can't leave my job." Or "I can't, you know, walk away from my business." For our family, there's some demands that can always be dropped, for example, family dinner. If someone is having an overloading day they can eat in their room, they can eat in a quiet space. That's an example of a more simple demand drop or maybe not showering that day. Like, there can be these more simple demand drops. But I think thinking through where can I drop demands. And spending less time masking. So, figuring out who are the safe people to be around who I don't have to mask as much. Are there things I can say no to? To say no is huge, just like working on boundaries. And then that gets into people pleasing. And, again, working with a therapist, I think around why I say no hard can be really helpful. I just spewed off a random list. There's more and I think I have a few blog posts that talk about recovery tips, we can link to that. You're going to get a more linear version of me when I write versus when I talk. PATRICK CASALE: I like to get both versions because both are unbelievably helpful. And I just learned a new word today from you. So, interoceptive, I did not know that term. So, here we are. But these are great tips. And I think you're so spot on when it's like different things are going to work for different people. And it's so easy to say like, here's a list of 10 things to try things out. You know, for me, I always need to take hot showers, and like I've always been obsessed with them. MEGAN NEFF: Me too. PATRICK CASALE: And I never realized why I take two showers a day. But now I have a very good understanding and just doing those types of things have been really helpful. And, again, hitting home on having a neurodivergent affirmative therapist really important. If you're, you know, struggling and you're autistic, if you're ADHD, if you have any form of neurodiversity. Like, having good therapy is so crucial. And yeah, being able to unmask, like Megan said, so when you go on a podcast with your friend, and you know each other you don't start with the conversation with, "Hey, how are you doing today?" Knowing that Megan is going to say, "Oh, that's a really bad question." But those are the things, right? That we were talking about, the little things that build up. So, if you can remove these little things from your day-to-day, like the energy it takes to revisit your emails, the energy it takes to communicate with your friends or your loved ones, it's really helpful, because it's just that one extra fucking thing that you don't have to do, or you don't have to worry about, or you don't have to put your energy into. And I think it's so hard when everything takes that extra little bit of energy, MEGAN NEFF: Yeah, absolutely. PATRICK CASALE: Well, this has been a really great conversation about a topic that I think is, obviously, near and dear to our hearts and that we know a lot of you are experiencing in the moment or have experienced. And I hope that this has been helpful. And we're going to continue to have conversations about these topics that a lot of people are just not having. And I think that getting this perspective is really great. So yeah, I don't have anything else to add today. I think I'm hitting my limit. So, I'm going to be honest about that on air. And, yeah, I think that's where I'm at. MEGAN NEFF: I love that. And that's perhaps the best you asked about, like, what can people do to help with burnout? I think that's actually probably one of the best things is to recognize when we're at our limit and honor it. PATRICK CASALE: Yeah. I've gotten used to now post-surgery two things a day. And my schedule is my limit. And that used to be really hard. And it's getting to be a welcomed part of my week where I can say like, all right, I get to talk with Megan for my second thing of the day, and then I'm done. But yeah, I think for any of you listening, all this information will be in the show notes, too. All the links to the blogs Megan's talking about, and the articles. And I just hope that this has been helpful for everyone, too. We still don't know how to close this podcast out, so… MEGAN NEFF: Didn't we come up with like an awkward…? PATRICK CASALE: Yeah, we're just going to say goodbye and then turn it off. MEGAN NEFF: Yeah, but we had some kind of tagline. I'm trying to remember at the moment, like the place where we do awkward goodbyes, goodbye. PATRICK CASALE: The place where we do awkward goodbyes on the Divergent Conversations podcast coming out every single week. Goodbye. MEGAN NEFF: Perfect.
Have you ever felt like there was some big mystery that you could never solve as to why you acted and thought the way you did? Maybe you were told that you are neurodivergent but struggle to understand what that means for you. Do you feel tired of masking and don't know where to find a voice that will speak out, be supportive, and educate about neurodivergence? This episode is for you. Top 3 reasons to listen to the entire episode: Understand what it means to be autistic and how it can be easily misdiagnosed and misunderstood. Identify the many ways in which autism shows up in a person and its diversity. Understand what it means to mask and how this reflects in and shifts the dynamics of relationships. In this episode, you'll hear from Dr. Megan Anna Neff, Psychologist, and Patrick Casale, MA, LCMHC, LCAS, 2 Autistic-ADHDer Therapists, and see what this podcast has in store for you. Transcript MEGAN NEFF: Hey, I'm Dr. Neff, I'm an autistic, ADHD psychologist. PATRICK CASALE: And I'm Patrick Casale, I'm an autistic, ADHD psychotherapist. And this is Divergent Conversations. And we are really happy to start this podcast together. So, Megan, episode one, we've been talking about this on Instagram and are making this a reality. So, do you want to take over and just kind of tell everyone what we're doing here? MEGAN NEFF: Yeah, so we have gotten to know each other through, we recorded two podcasts together on your podcast. And then through messages, realized that it felt like we had a lot to talk about, specifically, around autism and ADHD. And we wanted to create a space where we could have more of those conversations. PATRICK CASALE: Yeah, and I think that's the really important part for our audience is to have those conversations. Megan is going to talk a little bit about all the content that she creates and puts out on her Instagram, and all the resources, and the things that she does. And it's really important to also be able to have authentic, real conversations that our audience can listen to and participate in. And we want you all to be listening and just feeling like there's a place for you and there's a safe space for you because we realize so often that we get so much feedback about the work that we put out and it's just really important for us. So, Megan, did you want to talk a little bit about what you're doing behind the scenes, outside of this podcast? MEGAN NEFF: Sure. I think my mic, okay. Okay, yes, I do. But so, a little bit of context for my life. Do you like how I need to nail down the prompt there a little bit more? Like Patrick, that's too broad of a question. What am I doing here? PATRICK CASALE: Yeah, a little- MEGAN NEFF: I think it'd be context for my life. Actually, I had that thought as we were, like, starting this episode, and even as you were like, Megan Anna, do you want to tell our audience what we're here about. I had that like moment of freeze, of like, "Oh, shit. Like, this is the kind of thing I haven't pre-scripted it, this is a summary statement, how am I going to summarize, like how this came to be?" So, it's interesting to be in this moment with you. We're creating a frame, but it's not yet established. And I'm noticing that autistic part of me is craving like, okay, what's the frames? What's the rules? What are we talking about here? So, that's my interpersonal in the moment divergent thought. Back to your question, what's my context? So, my context, I live in the Northwest in the United States, in Oregon. I have a small private practice where I work primarily with neurodivergent adults and I do some autism and ADHD assessments. I think I'm one of a small handful of neurodivergent-affirming assessors in the States. It's a slightly different assessment process. And then I create content on Instagram, mostly educational content. Neurodivergent Insights is my handle over there. Part of what I've been noticing I'm longing for and one of the reasons I'm really excited for this project to get started, is that a lot of what I do is education. And the things that really get me excited is where I'm talking more vulnerably about the experience of being an autistic ADHD human. And I think that's what I noted in the conversations we've had in the past is, it felt like we could go there pretty easily. And so that's what I'm hoping for this project is that we're able to grapple with both the joy, and the grief, and the complexity of what it means to be a neurodivergent human on this earth. PATRICK CASALE: Yeah, I love that. And I appreciate you also naming your vulnerability in the moment because I think that's going to be an important part of this process of like, yeah, I need the prompt and I need it to be concrete right now. And it's so interesting how we are processing this experience very differently in the moment because as someone who… let me circle back and backtrack, I will give some context now. I am in the southeast in Asheville, North Carolina, originally from upstate New York. I own a group practice here, Resilient Mind Counseling, made up predominantly of neurodivergent therapists, and prescribers, and entrepreneurs. We specialize in ADHD, and autism, as well as the LGBTQ community. And then I also own All Things Private Practice, which is a private practice coaching business where I help therapists start and grow their businesses throughout the country and have a podcast, the All Things Private Practice Podcast, and host domestic and entrepreneurial international retreats. I notice as I'm talking right now, I'm like, "Ooh, do I even know my context or my bio?" I hate bios. So anyway, I think that, you know, the two episodes that you've come on my podcast and we've talked about our own experiences for me have been really freeing because it's really enjoyable to talk with someone who gets it. And we can almost, like, read and pick up off of each other's energy and experience. And I remember the last episode you were on with me where you looked at me and you stopped talking, and you were like, "Wow, this is really fucking dark right now." And I think what happened in the moment because I've been getting feedback about that episode recently of like, "Oh, my God, it wasn't dark at all, it was so validating, it was so helpful." I think what was happening is we were picking up on each other's vulnerabilities. And we were really absorbing the pain, and the grief, and the struggle that we both experience on a daily basis. And even though we were putting the information out there very succinctly, and very real, and authentically, like, I think it was the energy that was being transferred back and forth is what we were experiencing that day, perhaps, and I'm excited to see where this goes. And you mentioned to me on Instagram, like, this has to be real, like this cannot be cookie cutter. Like, I want deep conversation, I want real, authentic relationship. And I look into our lives and other neurodivergent folks who come on the podcast as guests really being able to be vulnerable and share their stories, too. MEGAN NEFF: Yeah, yeah, absolutely. I think that's something you and I have talked about in our conversations is, we crave place for complexity, place for nuance. And I hear a lot of people talking about that these days, that with so much communication kind of gravitating towards social media and these online spaces, I think we are losing the ability for some of those more complex, nuanced conversations. And when it comes to neurodivergence, it is a really complex experience. And so, we have to have space for this complicated, like, what is the word I'm looking for? Paradoxical. Like, when you're trying to hold to things intention, we need space for this sort of paradoxical conversations. They're hard to have, you know, in a 90-second reel, or a single post, or even a blog post, it can be a bit complicated to try and host that sort of nuance. PATRICK CASALE: Yeah, absolutely. And I think it's so hard to capture in those moments because things can be misinterpreted if you're [INDISCERNIBLE 00:07:32] a 90-second reel. You can only put so much information into that. And it's so easy to pick something like that apart, and to really have longer conversations, and really get into some things that are really deep. And like you said, paradoxical. There's a lot of, all things can be true in a lot of these conversations and I think that that can be really challenging too, to try to make sense of. And I want to give some background on both of our, you know, stories as autistic, ADHD people before even delving into the mental health component, and the entrepreneurial component. Like, life has been pretty hard in a lot of ways for both of us. And, you know, like Megan just said, there's challenges moment by moment, and a lot of these days, and just trying to figure out how you're feeling, and what you're experiencing, what's coming up and reacting appropriately in those moments is quite challenging. So, you know, I am a late-diagnosed autistic adult who was diagnosed last year after kind of having plenty of suspicion most of my life. And after telling most of my close friends and family, they were not surprised. But I certainly was. And Megan and I have talked about grief before in terms of diagnosis, and it was challenging. And I think it was also liberating and that feels paradoxical in a lot of ways. MEGAN NEFF: That's so well said. I had such a similar experience around… Well, I think at first came to liberation for me. And for me, this is a very familiar story, especially, for autistic adults. And I see this a lot, particularly, among autistic moms, is that it's after a child's diagnosis that we discover ourselves. And that was very much my story. And at first, it was so liberating because I'd been in-depth therapy for about four years and I had probably 100 questions or mysteries, that frankly, I was working to come to acceptance of, I will never know why I'm the way that I am. So, I was working to accept that my existence was a mystery. And then what fell into my lap was this one thing that explained all the mysteries and that is such an empowering, freeing, liberating experience. And then came the grief. Like, so the law aberration, and then the like, oh, wait, these are permanent limits, this fatigue it's probably not going to go anywhere anytime soon. And holding the both of that has been so important for my journey. And I think you and I are both staunchly in the neurodivergent affirming world. I think it can be a little bit harder to talk about the grief, and still sound affirming or be affirming. But I think it's deeply affirming to honor both experiences. PATRICK CASALE: I completely agree. And I think that is one of those things that feels really, really challenging to make sense of and to discuss openly and freely. And, you know, to honor other experiences, too. And I just know that my diagnosis came with grief immediately where I was just like, "Oh, well, this could have explained a lot when I was growing up had I known and had my parents ever decided to pursue any sort of support." Which they did not. And then it came with a lot of questioning and then a lot of putting things together like, "Oh, that makes sense. Ooh, my Thai Beanie Baby and Garfield collection at an early age makes a lot of sense now." And, you know, I think I see myself like really struggling in the social aspect of all of this in terms of where things ended up landing for me and just realizing like, that's why it's been so hard to make so many friendships and so hard to feel connected. And like you were saying, like searching for your arrival point. I often thought that like, "What the hell is wrong with me? Why can't I connect with people? Like, I know, people care about me, and they love me, and they tell me this, and I can make sense of that rationally. But I can't feel it, I can't absorb it." And I often don't feel that that feeling in a way that is also shared. And, you know, I always made sense of the ADHD part. And I think that society does a good job of kind of helping cishet white men come to terms with being ADHD. Like, it's like almost expected in a way at times, of like, yeah, you're a young white man. Like, you have all this energy and like, this is just who you are. And it's so much more complex than that. And also true to some degree, like majority of our research is done on white men and boys in particular. And, you know, I think that this last year has been really freeing because now I can say to myself, like, I understand my energy limits, I understand what I do, and don't want to socialize and who I want to socialize with. I understand that I'm going be using sensory or soothing tools most of the time when I'm socializing. And I just have to really be aware of where my energy goes. And I also know, like, you said, like, oh, this is lifelong. Like, okay, this is something that I'm going to be managing and struggling with throughout the duration of my life. And I think that's hard to still come to terms with at times. MEGAN NEFF: Yeah, yeah. This is kind of a random association to something you said. But you mentioned kind of the cultural script about being a white cishet, ADHD male. And also, thinking about the fact that you are a late-in-life diagnosed white cishet, autistic man. Some of the people I work with that struggle the most with diagnosis and with imposter syndrome are late in life diagnosed white cishet men because like, for me, I feel like, well, of course, I wasn't identified. I'm a woman, I present in these other like, non-stereotypical ways. So, when you can have something to point to of like, it makes sense I'm late identified, I think in some ways, I mean, there's other challenges that come with that for sure. But it makes sense of the later diagnosis. I also feel like sometimes I have to catch myself of, it's like there's a split that happens of like, genderqueer, BIPOC women autism, like, and then those white cis men who get the diagnosis early. And so, then it's like, I don't know. I don't know if you've felt tension around that. But it's something I've been thinking about lately of partly the split, and I don't even like how I always talk about it because I realize I talk about it as if white cishet men with autism, wow, that was a word slip, autistic men have some kind of privilege as if they aren't also experiencing a lot of complexity around this. PATRICK CASALE: Yeah, and this is why we started this podcast because this… my thought process right now around my response is complicated. And it's so interesting because as someone who was late diagnosed, not knowing this throughout most of my life, you know, I don't think I would have ever, you know, had any thought or knowledge that I could fall into, you know, the neurodiversity, you know, marginalized community. I don't think even, you know, I pass, obviously, very well, in most instances, and I didn't have to think about it, you know? I don't think I had to feel forced into thinking about identity because I have so much privilege. And it's so complicated because I also struggled so fucking much growing up. And childhood was hard. Adolescence was hard. And adulthood was hard. But I know that it's harder for a lot of people. And I think that makes it challenging to carry both and to really conceptualize both are true. And again, lots of paradoxes here and just, yeah, I don't know. I feel like it's challenging. And it's heavy. It's just heavy. MEGAN NEFF: Yeah. PATRICK CASALE: And, yeah, go ahead, I'm sorry. MEGAN NEFF: Well, I was just going to jump in, like, this is part of the complexity of identity, right? Like, both you and we're part of a neuro minority and a lot of our pain is associated with that. We are also very, very privileged within our neuro-minority group, right? We're both entrepreneurs, we're both white. Like, I identify as genderqueer, it's… that could be a whole other podcast. I'm attached to the idea of being an autistic woman and I identify more as agender. But I have like, het or I'm in a cishet partnership. And I'm in a cishet partnership and I am cis passing and cis presenting. So, I've got a ton of privilege around, like, I've got cishet privilege, white privilege, economic privilege. So, we're in this space where we're very privileged within our neuro-minority group. And then within society, we also have this marginalized experience, and to be able to speak to both of those experiences, honor both of those, I think, I know that my privilege identities provide so much buffer from my more marginalized identities. And I think it's really important to talk about that, so much of autistic advocacy space is dominated by white privileged people who aren't considering the complexity around that. So, yeah, here we are episode one. And we've kind of tripped into this huge conversation, PATRICK CASALE: Which is exactly, again, I want to just say this is what we want because staying above the surface doesn't work for either of us, and artificiality doesn't work. And it's so challenging to just not have real-depth conversation too. And we can also say that if we were recording prior to recording, you would have seen that Megan and I were using artificial intelligence to talk about a weird children's book that I had it write today and all sorts of other shit. So, like, you know, rabbit holes galore. But nevertheless, you know, I think it's important to just really name what you just named, and we'll continue to advocate and we'll continue to show up in honor and listen to people whose voices really matter. And we want to have a lot of those folks on this podcast, too. When you messaged me, originally, we were talking about this idea. And I think you said something that really stood out to me, which was something like, "I'll bring the chaos and you'll help organize it." And I feel like that could definitely be the tagline here. But it's so interesting how, you know, sometimes my autistic self like really is dominant. And other times ADHD is like, nope, I'm here like, this is my show. So, can you talk a little bit about that? MEGAN NEFF: First of all, it's so funny. Okay, so I like Carl Jung, who's a psycho-analytic person, and he talks about the collective energy or the collective unconscious. And right before you said the thing about the chaos in the order, I was having the thought, because you were like, pulling us back out of this kind of complex puddle that I'd let us do. And you're giving like bird eye view, and I was like, "Oh, this is the chaos order thing." And then you mentioned it, so… PATRICK CASALE: I just bought one of my staff who is a bit young and therapist and psychoanalyst union tarot cards and union socks for our holiday party that we just had, just wanted to name that. MEGAN NEFF: That's- PATRICK CASALE: So, Zach if you ever listen to this, you're welcome. MEGAN NEFF: That's a good gift. PATRICK CASALE: So, anyway, the chaos and order piece and the organization of the chaos because I think that can flip flop all the time, right? Like, because there are definitely things that I really struggled with structure and orderliness around. And there are lots of people in my life who are like, they have spreadsheets for their spreadsheets and they're very happy about this. And I cannot make sense of that. Like, my brain doesn't work that way. Spreadsheets freak me out. But I know how helpful they can be. And I'm just curious about your processes in terms of when you've said that to me and just in general. MEGAN NEFF: Yeah, well, I mean, you were even surprised. I think, partly, I took a screenshot of my computer and I had, you know, like, 15 browsers open reaction. PATRICK CASALE: Visceral reaction. MEGAN NEFF: uh-huh (affirmative), uh-huh (affirmative). It's interesting, I think I present to the world more organized and perhaps more autistic than I am… like, my work process is very ADHD, which I'm sure is part of my stress. Like, if you opened up my Canva, which is where I make all my infographics, like, it is just a mess, there's no order to it, which makes it really hard to find like templates or whatnot. So, my process is pretty disorganized. I tend to somehow be able to wrap it up into a way that I think, like, when I present a infographic or a blog post, I think it has some order to it. But the behind the scenes is just like a messy closet of like whirlwind, which I'm sure contributes to my stress. And I wish I had the executive functioning to know how to create those systems, but that is not my strength. PATRICK CASALE: Yeah, I appreciate you naming that. And those are the things that I feel like are my strengths. And then I have this system where internal chaos, it's more like my ideas are all in my head, but I never map them out. And I lose things or lose track of things so often. And it's so challenging. And I'm so thankful for the folks in my life who are either admin assistants, or virtual assistants, or the people who help me with those processes. And I just really struggle with it. But everything in my office right now has its place and is very orderly and is very clean. And if I walk into my wife's craft room right now, I would have almost a mini panic attack. So, I struggle with just stuff being everywhere, visually. And that is really overwhelming to me. But other than that, like, everything is very rigid in my thinking. And it's just interesting to see. You know, I think the ADHD parts of myself for entrepreneurial success a lot because I think that's when my creativity really starts to take over is when that part of my brain is really stimulated, and that part of me is just like. But then I also struggle with the fact that I will definitely hyper-fixate, and lose track of time, and lose track of things. And then all of a sudden, I don't even know what the fuck I was doing for the last hour. MEGAN NEFF: Yeah, which that experience, right, can either feel so good or so terrible, probably depending on what's grabbed our attention for the hour. Like, I hate the feeling of wasting time. I think it's one of the worst feelings in the world. So, if it's been something like bad it feels terrible. And it's almost like I want to figure out how do I get that time back? I think it's just part of being really existential. And I see this a lot in autistic ADHD people of, I'm very aware I'm going to die, and so, I'm very aware, like, if I just wasted an hour scrolling, that's an hour of my life I'm not getting back. PATRICK CASALE: Megan, I almost messaged you about this the other night. Like, it was like 3:00 am. And I was thinking to myself, but like, if I go to sleep now, that's an hour lost, right? Like, what if this is really important? What if this show that I really want to watch is really important, and very aware of like, okay, I have less time going forward. I have less time going forward. And I'm thinking about that all the fucking time. MEGAN NEFF: Yeah, yeah. I'm curious what it is about autistic ADHD mindset. I notice we tend to do that more. Like, I know, for me, I definitely have a scarcity mindset when it comes to time and I imagine partly it's because my resources, my energy resources, my executive functioning resources feel scarce. I also imagine it's more than that, but it's certainly something I've noticed being more common among this group. PATRICK CASALE: Yeah, it's like a video, game, lifeforce in a way, you know, while it gets depleted, you realize like, I have less and less ability, I have less and less capability right now. And I think that, if you're hyper-focusing or just very aware of how depleted you get, and how often you get depleted, and just know how valuable it is when you're feeling okay, or you're feeling good, or you're feeling just able to complete the task on your to do list like, I don't want to waste that. And those moments can be fleeting and it can be really challenging to kind of regenerate that energy again. MEGAN NEFF: Yeah, yeah, yeah. PATRICK CASALE: I think that before we started you were talking about my throat and my surgery and saying, like, "I don't want to waste this resource that we have right now." And you know, it's just that feeling of like, there's this urgency in a way. And I agree with you about the timeliness thing, that's really a struggle for me. Just thinking out loud, you know, about what we want to offer people who are going to be listening going forward. I mean, what are your thoughts on kind of what you want to offer this community, and who's going to be listening to this podcast? MEGAN NEFF: Yeah, I hope that we can offer a space where there's some recognition. I think, even thinking back to the two podcasts we recorded on your podcast and the comments that I've gotten on Instagram, and that you've gotten a lot of those comments, the ones that felt really meaningful were around like, "Oh, either I feel really recognized in this or this helps to give me language around this experience I'm having." I think, there are so many experiences around the autistic ADHD experience that can feel really isolating, that can induce a lot of shame. So, I think giving it space, like breathing space, to talk about some of these things so that people feel less alone can be more gentle with themselves, is my hope. I think part of that will involve public learning, which terrifies me like, I'm already catching my brain ruminating on the conversation we just had around identity and privilege because it's such a sensitive topic. And I'm like, oh, shoot, like, what did I say? How are the ways that this… or maybe I wasn't as careful in my speech as I could have been, or this could be experienced by a listener? But I think, for us to do the kind of podcast we're wanting to do, being okay with public learning and with diving into that complexity, which sounds, frankly, kind of terrifying and enlivening at the same time. But I think that will be an element of what we're doing here. PATRICK CASALE: Yeah, I couldn't agree with everything you just said more than that. And there's going to be a lot of moments where there's going to be public learning. And I think whenever you're talking about just people, and struggle, and the complexity behind multiply marginalized identity, there's always room to grow and learn. And I just hope that we will continue to do that, and amplify voices of people who also are parts of community that we do not exist in, and just really making sure that we are trying to the best that we can to just show up and to honor space. And I don't think that people will agree with everything that we have to say about our experiences, either, you know? And I think that's a part of identity. And I hope that we're able to, like you said, just referencing people reaching out to us privately about either your work that you're doing on your Instagram, or our podcast episodes, or just whatever we've got going on to help people validate and affirm because so many people just either don't have language or experience, or just don't feel supported, or safe enough to talk about experience. And I think that's why we ultimately decided we wanted to do this. And I hope that, you know, it allows people to feel like even if they can unmask by themselves while listening, or it gives a little bit of liberation in a way, or it leads to late adult diagnosis, if that's something you're interested in, whatever it feels like that allows you to really align with who you are, and your identity, I think is really important here. MEGAN NEFF: I like how you said that, yeah. PATRICK CASALE: And I think going forward, you know, just trying to talk about how we're doing too while we're going through this process, you know, it's interesting to co-host something you're going to learn a lot about each other along the way and it's just an interesting back and forth process. And I love having conversation like this. And I also overthink conversation afterwards where I'm like, "How did I come across? Like, was I a douchebag that entire time? Did I overthink this or say too much?" MEGAN NEFF: Yeah. I mean, and like, that's that classic masking self, right? I always must say this, someday I'm going to learn how to actually say it. But that experience of like going over past conversations with a fine, okay, a fine comb tooth? What am I trying to say? PATRICK CASALE: A fine tooth comb. MEGAN NEFF: A fine tooth comb. I can never say that. Like, when you go over that past conversation with a fine tooth comb of like, okay, what did I say? How could it have been interpreted? I'm that anxious ruminating. That is so pervasive among high maskers. I mean, that, until I understood what was happening, I spent so many hours of my life doing that, I still do that. And I'm sure I'll do that with this podcast. But I do notice I do a lot less of it now that I feel like I'm living a less masked version of myself. PATRICK CASALE: Yeah, I definitely agree. And I like that you name that for sure. I just want to thank everyone for listening to episode number one. And we are going to continue this process and just learn and grow as we go. And I think that this is going to be a really exciting journey to go on together. MEGAN NEFF: I agree. You're looking at me like I should chime in here. PATRICK CASALE: This is what I was talking about. It was like how do we close episode one? And that's what I'm thinking about right now as I'm talking, so like my words are coming out faster than my thoughts. MEGAN NEFF: Have you always been bad at goodbyes. This is like an autistic thing. I really [INDISCERNIBLE 00:31:55] goodbyes. PATRICK CASALE: Yeah. I'm [CROSSTALK 00:31:57]. MEGAN NEFF: We just like end and have it be like a really autistic goodbye, where we don't have a greeting, we don't have an ending, it's just bye. PATRICK CASALE: I kind of like that because, my God every social situation I've ever been in has ended like that. And it's always like, how the fuck do I get out of here before I can [INDISCERNIBLE 00:32:18] people can make eye contact with me or before like I have to say goodbye. MEGAN NEFF: Or they ask for a hug. PATRICK CASALE: Yeah, they want… MEGAN NEFF: Yeah, yeah. PATRICK CASALE: Then I have to read, do I handshake, do I hug? [CROSSTALK 00:32:28] Do we just look at each other and nod? I mean, it's… MEGAN NEFF: Yeah. I just always awkwardly leave and avoid the goodbye. PATRICK CASALE: Yeah, I mean, I do that now. And I think I used to like linger in the space of like, "Oh my God, I feel like I need to say goodbye. I don't want to say it. I want to leave. I feel bad leaving." So much internal dialogue, for sure. So… MEGAN NEFF: Maybe our sign-off can be something like a place where we don't do awkward goodbyes or a place where we do, do awkward goodbyes, goodbye. PATRICK CASALE: So yeah, I like that a lot. So, a place where we do awkward goodbyes, goodbye. And then that could just be it. MEGAN NEFF: I like it. Let's do it. PATRICK CASALE: All right, well, a place where neurodivergent and I just said the name of the podcast wrong. This is a good glimpse into the creation world. But Divergent Conversations podcast, a place where we do awkward goodbyes, goodbye!
Our spooked spelunkers continue ever deeper into the underdark after the sing-song voice reveals herself to be a massive spider-woman hybrid. She runs off and they stupidly follow on a heroes errand. They come across another person....and after speaking with him find themselves in the middle of something much larger than expected....as is the way with our B-Team.Some of our music used in this episode was taken from Tabletop Audio at tabletopaudio.com.Additional sound effects came from www.zapsplat.com.Also from: Music and Sound by Syrinscape. store.syrinscape.com/what-is-syrinscape/?att Because Epic games need Epic game sounds★ Support this podcast on Patreon ★ See acast.com/privacy for privacy and opt-out information. Want to help us navigate the plot twists that come with making an amazing podcast? Well there is no difficult terrain between you and supporting us over at https://plus.acast.com/s/ritgeekpodcast.
Every day in the USA, school kids pledge allegiance to a flag. Why tho? Chris and Clint discuss Utah's flag, the Russian Doll-committee conundrum, government reach arounds, daily press conferences, ill-advised airport gatherings, and banana runts.
Listen to Wendy talk with Joanna from USA about her successful journey on Heal Endometriosis Naturally, 12 Week Online Foundation Membership Program with Wendy K Laidlaw. Discover more about how this may help you and download your FREE Top 5 Jump Start Tips at Https://HealEndometriosisNaturally.com Get FREE Paperback book worth £14.99 (just pay shipping £7.95) at Https://HealEndometriosisNaturallyBook.com Apply to work with Wendy at Https://HealEndometriosisNaturallyCourse.com Read the full transcript below:- "Wendy: Hi, this is Wendy Laidlaw here from Heal Endometriosis Naturally. I am joined today with Joanna, which is very exciting. Hi, Joanna. Joanna: Hi, Wendy. Wendy: How are you today? Joanna: I am doing really well. Wendy: Well, thank you so much for agreeing to be interviewed with me today. I know everyone that first comes on to be interviewed -- it's a bit nerve-wracking. It's kind of like "What questions is she going to ask me?" but I was particularly excited about interviewing you today because you're coming to the end of the foundation program. You've had stage four Endometriosis. You've had cysts. You've had adhesions. You've had everything. And I think people will really be interested in your stories so I thought maybe you could just give a little bit of background. I know you've read my book and that lead you to the foundation program, but perhaps you could tell a little bit more about where did you see information about the book, what you got from the book and then we can get more information from you then. Joanna: Okay. So I didn't know that I had Endometriosis and about last year I started getting a lot of pain. I've always had painful periods. My periods started when I was 13 and I had to leave school the day it started. I was in so much pain and it's been like that forever. It's always been taking time off work and leaving a college class in the middle of a session because your pain was so intense and crying all the way home because your legs were going numb. And I always thought that was normal. I had no reason to question that that was not normal to feel like that during a period, more so because my sister was like that, my cousins were like that. It ran in the family. I don't tend to talk about other girls about how do you feel when you have your period, so I based it on the people around me and just went on with life and it actually started getting worse as I got older but more so last year. The week before my period my insides would start to feel like they were on fire and very sore like somebody kicked me or punched me in the gut. Then I would get my period and it would last 8 days and be horrifically heavy and you'd be so sick and then the whole week after, up to two weeks after sometimes, I would be, again, with this super sore gut. And that was completely new, as a whole new phase for me and I would get maybe four good days and then the next period would start. So it became pretty cumbersome to deal with that. It started affecting work and life because I would go to work and I'd start to get this sore feeling and it would always start near my ovaries but I always thought it was my appendix. That was "Something's wrong, it's got to be my appendix," because, like I said, I never thought it would be my reproductive system acting up. Joanna: So I work in the school district. I work with kids so I'm always on my feet, very active. I'm a very energetic person so I like to participate with the kids and last year, May, I started with this extra pain and I couldn't function with the kids. I would miss about three days a week from work. That would be going in and begging the principal, "Can I please go home? I can't even carry my own weight right now. I'm in pain." So eventually I had to make the call and put my notice in because I wasn't reliable anymore in my job and started doing test after test, seeing doctor after doctor, and every test was coming back "There's absolutely nothing wrong with you. Your imaging looks perfect. The ultrasound, the CRT scans, X-rays, everything is great." And I was doing two CT scans a month. You'd do it, you'd go home, the pain would intensify, you end up back at the urgent care and another CT scan. Eventually they started calling me an enigma saying, "There's nothing wrong, it's all in your head. Yeah, you're saying there's this pain but we're not seeing what you're saying." So that went up from early June last year until September I had the gynaecologist finally say, "Well, I don't even think it's gynaecological. I'm gonna send you to a GI. I think it's in your gut." And the reason was I was experiencing a ton of gut pain every time I had my period. That bruising was all in my gut. Joanna: So of course I went and the GI wants to do a colonoscopy. So, okay. I prepped for that, which is, by the way, horrible. I mean, you're already not feeling well and then they put you through this 10 day prep regiment and you go through the procedure. And that came back nothing's wrong, because internally they couldn't see anything wrong. I ended up having a very close friend of mine through church that had just gone through a hysterectomy. When she was able to come back to church everyone was kind of hearing that something's wrong with Joanna. "She's not well," "We're praying for her," but she didn't quite know what was going on, so she sat down with me and she said, "Do you mind telling me what are your symptoms? What are you really feeling?" So I started telling her about the pain, that my legs would go numb, my back would hurt, my intestines were always sore, and the ovaries and the period were horrible, and her first reaction was, "Have you ever asked about Endometriosis?" Because that's what she had. She had stage four and unfortunately did not know about things like this. She's one of the ones that ended up getting a hysterectomy from it all. But I had never thought about it. Joanna: I grew up in Canada and would go to the doctor and tell them about the period and Endometriosis never came up. It was never a word we would hear about, so I never had reason to think about it. So I said I would go to the gynaecologist again and asked to see if you could check for Endometriosis. And apparently there's no test. You have to get a surgery. Well, I had to go to three different doctors to convince them to do a surgery. It's not like everybody goes in asking, "Can you cut me open? I want you to see what's going on." And finally I kind of have to lie. It wasn't a full lie but I had to then think back about my family history and say "I don't know if it's Endometriosis but my grandmother had severe pain and my mom had this and my sister had this. And fibroids run in the family." And as soon as that came up, then he goes, "Okay, I don't think it's what you have but I'm willing to go in." So I had a [?] [00:07:46] booked a month after the colonoscopy for endometriosis diagnostic. And that was in November of 2016. And when he went in I remember coming out of the anaesthesia. You know they say you're not going to remember what we tell you. I remember everything he told me. He came and he sat down and he goes, "Well, I have good news and bad news. The good news is you were right, we found Endometriosis. The bad news is by the time we've done the surgery it's so far gone that there is nothing we can do about it." He said, "I was able to burn off a bit on your ovaries but it's all over your intestines and we can't burn your intestines." Which I'm glad they didn't try to cut my intestines. Wendy: I'm glad, too. Yes. Joanna: I just remember crying. It was so overwhelming to hear that you have this. Sorry, I'm going to cry now. It's really overwhelming to hear that you have a disease that they could have done something about but they refuse to help you. That's kind of what the medical system is. But yeah, so I had these pictures and I just remember going home and staring at these pictures of my gut, black, covered with these black blood things. I can't even describe it. It looks like you're invaded with something. It wasn't just a little bit, so of course it's overwhelming. And to know coming out of it that you have to live with this pain now. That's their theory. So I didn't take very well to the surgery and I don't do well on the drugs so I was very sick from that and two weeks later he had me come back in to go over things in more detail. The first thing he wanted to push was Lupron. I have a friend who has breast cancer and she was on Lupron. I told them, "This is what you give cancer patients." He says, "Yes, it's a very strong drug, but in your case this is what you need to go on." And he started describing the side effects, and it was like if I take this you're telling me the pain might get better but I'm going to have all these other symptoms that sound terrible. I mean, it was you're going through menopause, you might throw up, you weight gain weight or lose. Just all these things, and I got scared, and I think it was really good that I got scared or else I would have taken it. I've always just done what the doctors tell me because they're doctors and they're supposed to know better and they're supposed to be there to help us. So I had told him, and kind of just based back on my friend, she was taking a very natural route so I told him that day that I wanted to hold off on the Lupron if I could and seek alternative medicine. And the moment I said that he wrote me off. He literally said if that's what you’re going to do I can't work with you anymore. That those are not doctors. They have no medical educations like we do. We do not consider them to be actual doctors. So I said okay. There was nothing I could do. I was actually shocked that that was his response. So basically, "If you don't want my drugs that's it." So I went home very upset and my husband sat down with me and said, "You know well. You want to do the alternative medicine." We hadn't found a natural path yet but I started doing research online and I just typed in "healing Endometriosis naturally" and lo and behold one of the first things that popped up was your book. And at the time I was too cheap to buy it. At the time we didn't have Kindle, so I said, "Ooh, if I get Kindle I can get a free 30 day trial and download the book." Joanna: And I, despite having been a teacher and now being a substitute teacher, I really have to be interested in a book to sit there and read a whole book." And I started reading your book and I couldn't put it down. I literally read it in like a day. It was like I was reading my own story. Everything I had found online -- there was all this do this, do this, do this, but there was nobody that really made me feel like "This is what I went through, this is what I'm feeling, and this is what worked for me." And I was skeptical because I'd never believed in taking a natural route. I've really always been a Western medicine type of person, but the book really spoke to me and just opened my eyes to the possibility that, wow, if this is true I can fix things without having to go the medical route. So we started going through and I saw you had the cookbook, so I also downloaded that. I ended up buying both. I actually read your book three or four times because I'd always go back through and highlighting things and making note of what I could do. So I decided to try to follow the book to see if I could fix myself that way. I actually had not seen that you had the foundation program yet, so it was very hard. It was not easy to follow in the beginning because you're so used to eating what you want, eating how much you want to eat. I loved bread, I loved fast food. We went out and ate all the time. So for me to see no dairy, no soy, no sugar, it was like "WHAT?" Joanna: Luckily I have a very loving husband who said, "Okay, if we're going to do it, I'll do it with you." So we started slow and the first thing we took out was the gluten, and it took about a month to finally get past that you're always feeling hungry and you're always wanting something fatty and sugary. But by the end of the month we were actually able to take away all four of those things, and within 8 weeks of starting, on my own, following what I was trying my best to on your book, I started getting a lot of relief. And the biggest thing that excited me was the [?] [00:15:03]. That was the first thing that kind of popped out to me. I did my own research on it and I said it seems like it's okay to take. So I started with 40,00 for like a week. And I believe I had emailed you. I did not expect you to email me back. You emailed back and you had told me you started with 40 and went up to 80, so I did that. I was reading in the book about how it can break the adhesions down. One of the things that had come out of the surgery in November was that we were infertile because Endometriosis had completely sealed my tubes shut and the surgeon had come in and said that if you ever want a chance at having kids, you would have to try IBF and even that would probably not be successful. Like, that's how bad your tubes are. That was really hard because what I failed to mention was that what initially put me into the doctor was we were starting to consider having children and I had this pain and they said before we look at fertility, we ought to check this pain out. And that's how it progressed towards what it is now. Joanna: So it was very emotionally really hard. We're in our 30's now, and to hear that there's maybe no chance. Part of looking up the Serrapeptase, I came upon a lot of women saying that they had taken it and they had done a test. It's called an HSG test where they put a dye in and they check your tubes with this dye. It's like an ultrasound. Most of them, I was reading, they were saying, "My tubes are open." I was super skeptical and I said I'm going to try -- Wendy's book says 12 weeks on Serrapeptase and good things can happen. So twelve weeks later. I started January, the Serrapeptase, and then late February, early March -- I want to say it was the first week of March -- I made an appointment to do an HSG test. And here you have to go to reproductive clinic. It's a whole little process, but knowing my history the doctors there were pretty skeptical that what they're gonna see is maybe it's a little better but it's probably the same situation. So I was going with the same idea, and I remember doing the test which was, for me, actually pretty painful. I don't know why it hurt. Some women say it doesn't hurt, but other women it does. It feels like you have this burning liquid going up, because they take a balloon and expand your uterus. It's not a comfortable test to put yourself through, but it was worth it if it came back positive. The doctor was in there and I'm like clenching trying to get through it, and she stopped and she goes, "It looks perfectly fine. Your flow is so good." So the dye flows through the tube and she goes, "Everything is passing through. So your tubes are good." She goes, "There's a little bit of residue from scar damage, but it's not blocking anything.” I just remember being so happy. That was one of the best news we'd received since all of this had happened. It was just really good to know that, wow, now we have a chance to have kids. This Endometriosis can be stopped and things can get better. So after that was when I had, somehow, online, I had just happened to be going through stuff online. Your book popped up again and below it said Foundation Program. And I don't know how I didn't notice it before and I clicked on it and realised I could work one on one with you. And at that point your book had helped me so much, I was really excited to be able to have the opportunity to work with you because I knew I could get more than from just the book. And so yeah, I started working with you -- I don't even remember if it was May or June. Wendy: Beginning of June, I think it was. Joanna: Okay. And I probably wouldn't have done it if things had continued to go well, but after the HSG, about a month after or so, at the end of April, I remember emailing you saying something's wrong. My pain is coming back and I'm not quite sure I'm following everything that I'm on, but it's like everything's reversing. I'm going backwards rather than forwards and I was seeing a natural path at the same time because I figured I've gone away from believing in doctors but now I'm listening to everything the natural path is telling me because how can natural stuff hurt? Unfortunately, the natural path -- So I had done a blood test that tested everything, all my vitamins, all my hormones, and it came back that my DHEA levels, which is a hormone that you produce naturally in your body, were low. So she decided to prescribe me DHEA, which I actually in the office asked her, "Does this have any side effects?" And her response was, "No. If you take too much your liver's just going to detox it and out it goes," and whatever. Actually, I was on DHEA way before that, in January. It was about four months I was taking it for, but the effects did not hit me until April. And it was you that mentioned after starting the program, when you looked at what the natural path had me on, you said, "Oh my goodness! You're on DHEA what?" and I had never -- even though I questioned what the medical doctors were trying to put me on, I never questioned the supplement. Joanna: And in the beginning of June when we started you told me, "You need to stop right away." And I did not. So you said you need to look it up and when I looked it up I was shocked to find out that DHEA increases your estrogen levels immensely. It is considered a steroid so for men it basically takes estrogen and it converts to testosterone and they use it as a replacement for steroids. But for women it basically doubles up your estrogen level. And when you have Endometriosis you don't want to be doing that. And I had come across that article I shared with Wendy that there was experiments done on mice and it showed that they were on DHEA for 16 days. They were put on 16 milligrams, which is a lot for a mouse -- for 15 days I was on 10 to 20 milligrams a day for four months -- and they all had massive cysts in their ovaries. And that just hit me, and the reason I'm saying that is about mid june the pain got so bad that I ended up having to go to the ER and they found cysts on my ovaries. Again, I thought it was my appendix going, but no. I had a cyst on my right side. One had ruptured and one had not and it was causing immense pain. I couldn't walk. I couldn't do anything. Function. And I remember you telling me, "Even though you stopped the DHEA it's still gonna be in your system. Joanna: So the fact of me seeing this research article and now here I am. I've been on this stuff. It's only been four months and I have cysts. I believe that it is what helped to cause that. The gynaecologist disagrees, of course. So that happened and then it went from "you have a cyst" to "you have a twisted ovary." And then it went from "you have a twisted ovary" to "it could be something else." "It could be your [Indiscernible] [00:24:09] Endometriosis. So we were back on the Endometriosis bandwagon again and again the emotions hit because I was doing so good. I was back to work, back to normal life. I would do my photography. Everything was good and then I got hit and life just went down. It was really hard. I don't think I've ever cried so much as I've cried in the last two months. Joanna: So I ended up -- because the theory was the ovary was twisting, it was laparoscopic was the answer I guess, to untwist it in case the ovary was dying. So I did not want to do laparoscopic. I started doing the [Indiscernible] [00:25:00] massage for a bit ,and it would help but it wouldn't take all the pain away, and so I finally agreed to do the laparoscopic. Of course they go in -- and this was just recently, two and a half, three weeks ago on the 20th of July -- I went in for laparoscopic and I came out and the doctor said, "So there's no Endometriosis that we can see." She said there was one thing on your uterus and one thing on your bladder, and their tiny. They're like peas, tiny little things. And she goes, "There's nothing on your intestines at all." And it was mind blowing to hear that. What do you mean there's nothing? They said there's nothing that can be done. I've been doing this thing with Wendy but there's got to be something! She said, "No, there wasn't," and I think that was one of the best news that we had gotten. Joanna: It’s still shocking to know that here you were told only a few months back in November that once it hit your guts like that, that's it, you've got to be on these heavy drugs and there's nothing we can do. The likelihood it can spread, get into your lungs -- they really scare you. And now to hear it's basically in remission state, it's going away, was just amazing to hear. So it really just proved -- and in a short while, January to July, everything cleared up. But I'll show you the pictures. I don't know if you'll be able to see them well. That was my ovary in November. Completely white, marbleized, and the black dots on it, the stuff he burnt off. I mean, even to see your ovaries scalded like that is not [Indiscernible] [00:27:13] to look at. And then it's really hard to tell, but that's part of my gut and it's really black. It looks like it's black and blue. And I have a couple of other pictures I couldn't find, but basically a lot of my gut looked like that, just purpley black growth. Joanna: So when I went in and I got my new pictures -- so let me find it. This is in the exact same area. That's my ovary now. It's got a little bit of white, but it is not a marble. It's pink and fleshy and squishy like it should be. And my gut, the same area of my gut, is up here and it's completely normal. It was really amazing to see. I can't put it into words. It's just really exciting. i can't even find the one now. Oh, here we go. So this is not bad. It might look bad, but that was black before it looked white and the reason it's white is the Endometriosis left and it kind of left a little shadow of itself. So that is scarring but I know if we continue with the program that can all go away because obviously it's gone away on the other parts. So yeah, it's just been really good. I still battle with the end result of adhesions. It's left behind a lot of adhesions but with the myio-fascial massage and all that, I know it can be fixed. And I'm still taking my serapeptase. So I'm on this road now to being so close to back to where it was, which is super exciting. Wendy: Well, it's fantastic to hear your story and I'm so pleased that you're sharing this story because I know it's been an emotional rollercoaster for you, where you've been where doctors tell you there's only one route and it just feels quite hard to follow with the surgery and drugs and there's no way out. And then you take a way out and you speak to a natural path and you think you're doing the right thing and they don't understand them to be choices[?] [00:29:53] so they're giving you something that's feeding Endometriosis. Because not a lot -- natural paths promote, it's fantastic, but unless they understand Endometriosis and how expensive it is to [Indiscernible] [00:30:05] estrogens or any other traditional estrogens that you can blame it so quickly, and of course that's what happened with your insides, is they [Indiscernible] [00:30:13] but equally as well, I do remember you telling me when you went in that your cysts had gone as well. Joanna: Yeah, they were. So basically my reproductive area looked really good. No cysts, my appendix looked great. My appendix in November was marbleized. It had been attacked at one point and he didn't remove it because he said he didn't see any growths, but it was all white as well. But she said my appendix looked, great, my ovaries looked good except for the two little things they found. They did burn them off or whatever they do. And the gut looked great, so yeah, it was good. She mentioned the adhesion. That she could see, which I kind of expected that that would be there, but that's a small part of everything else. Wendy: Absolutely. And I know that you were reticent about going for the surgery, but you were in so much pain because the DHEA had inflamed your insides [Indiscernible] [00:31:18], which as we've found out is now partial bowel obstruction as part of the adhesions. You were always frightened and scared into having the surgery, weren't you, which you were reticent. You didn't really want to do. But we've joked about it afterward saying I'm so glad you did because I have had women say, "Have you got surgical proof that your program works?" and I'm going, "Well, normally the proof is the reduction and elimination of pain and symptoms." That's proof enough, women coming out of bed, having normal periods. And it's being normal, like a day and a half period or very light. No clots, not bloating no period pain. That whole shebang. And then as I say you've gone in and -- so how does that feel to kind of see those photographs? Joanna: Yeah it's good. It's weird to be looking at a photograph like that, but it was actually one of the prettiest pictures I've seen in awhile. It was really good, and I've actually even never seen my husband that excited since we got married. Because really the doctor didn't even talk to me first. She went to them because I was still coming out of anaesthesia and when he came to see me, my husband, he just had this big smile. I was crying partially because of that but also because we did find there was a little bit of a bowel obstruction because the adhesions had twisted my bowels a bit. But we are working on that. But he goes, "I know you're overwhelmed that there's still this pain in your side a little bit from the bowels, but this is so exciting." He was so happy to see that. And I think that's a big part of what this program has really helped, too, is it's really hard to deal with Endometriosis. It's not a disease that people consider a disease unless they have it. It's something that I have even battled to talk to women about because I've had a lot of women come to me and say, "I have Endometriosis and it's not that big of a deal. Why are you making it such a big deal? It does not hurt the way that you're saying." Joanna:So I think even as women, the education is not there, to know that there are different stages and it really can debilitate a person. Because it completely knocked me -- I was bedridden for weeks. It really does affect you. So that was hard. You feel very alone, which what I really loved about the program is not only having you, but you do these conferences and we get to see these other women we're talking to face to face and it's just so nice. It's really refreshing to have that, but it's also given me the confidence to build a better relationship with my husband because now we understand what are we really dealing with. It's not just, "Oh, she's whining again. Her period. Okay, whatever." And for him to even notice things like, "Hey, you remember last year you were having eight day long periods and it's like three days now and you're fine?" After surgery I was scared because two weeks after I was getting my next period. I hadn't had one in between and I actually called the doctor and said, "I don't want to do this. I'm on this natural path, but I think I need you to give me some painkillers because when my period comes it's going to be bad." Because I had to stop all my supplements I was on because they had me on a lot of things. And my period came and it was fine. I mean, it hurt a little because I had surgery pain and stuff, but the cramping was an hour, maybe two hours -- gone. And the period was generally really good. It lasted three or four days and that was it. And I was expecting to be in excruciating pain, so it just goes to show it just changes you so much overall. So it's been so amazing. It's been a really amazing journey. Wendy: Well now remember when you said that you were expecting your periods and the cause of all the drugs morphine and anaesthetics and stuff you really thought like, "Brace myself. I'm going to be in a big thunderbolt of pain." And that in itself is very interesting isn't it, because how does that differ from the periods you used to have before? Joanna: Oh, they were excruciating. Like I said before, I remember even in high school having to call my dad to leave work and come and pick me up and you are using every ounce of your strength to walk out the door because you cannot feel your legs. And you're getting this wave of pain and it was intense. And it was always like that. And to go from -- Wendy: I remember your shock when you're like, "And my periods came and no pain and I think that's really wonderful. Full credit to you for following the program, following the suggestions and being consistent and persistent with it because even in spite of the surgeon frightening you into having this surgery, which I knew you didn't want to have, so much good has come from it, really, in your case because you've seen your insides. You have physical proof of your insides healing. Isn't it interesting even with everything that's going on, your periods have improved because you've got such great healing in there and you've been removing systematically the inflammatory factors and swapping them out with things that re soothing and healing so the body's healing naturally. How does it feel? Do you think that that doctor six months ago, who pretty much wrote you off -- if you could speak to him now -- Joanna: Well, I don't know. If he sees this. [laughter] No, but you almost want to go and wave the pictures in their face and say look, I did this all naturally. But you know what, I still feel like with how stubborn some of the medical system can be that they could still say, "That doesn't prove anything. It wasn't as bad as you think it was anyway." Wendy: You're right, they would dismiss it, because I did the same when I got better. I went back to my doctor and back to my surgeon and said, "You need to share this with other women." And they dismissed me with the back of their hands. I think you'd got referred to as an enigma, and what I got referred to too. But I think when you understand the body's always wanting to heal itself and if it's not healing there's something stopping it. And then you're looking for what's stopping my body from healing. And that, to me, was my first -- when I was lying in my bedroom for three years in a gross, dreadful state with all but giving up home of carrying on and I got a cut on my finger and I noticed it was healing. And then I started to think, if that's healing, why are my insides not better[?] [00:38:46]? And then understand, as you said earlier, it's an estrogen-dominant condition. It's a hormone imbalance, there's lots of inflammation, so if you systematically -- and of course, as you say, people do normally need support because you're in pain, you're struggling just to get through the day, and that's where the foundation program came about because people were emailing me saying, "I read your book. It's great. It's starting to help but I've hit a wall," or, "I need more help," or whatever. So what particular aspects do you like? Is there a lot of emotional support, would you say, in the foundation program that you felt had been beneficial? Joanna: I think it's everything. I feel like you're a combination of a nutritionist, health coach, life coach. Yeah, it's really helped with my emotions to -- I mean, you pushed me to start meditation, which I hated doing and now I really appreciated it. The journaling was horrific, but now it really helped me to get my brain wrapped around things. It helps me to have a method of venting, because as a woman fighting a disease like this it can be overwhelming on those around you and you can get whiney and you can get complaining and sometimes you can need a break. And I saw that, that it was getting a lot for my husband and my family to handle, and having the journal kind of gives you that break too where you're not complaining out loud. It gave me an outlet to put my thoughts down and I was starting to even figure more stuff out about how I was feeling and my symptoms and connections between, "Hey," I wrote, "I had a really stressful day and my pain level was like a 9." And it kind of helps you become that investigator that you spoke about. Joanna: And then on the other hand, just the nutrition side, I know that I can come to you and say, "This got recommended to me. What do you think about it?" and just having tht person to go back and forth with really makes a difference. You can do research online, but it does make a difference to have a person to speak to. So yeah, I loved it for all aspects of what it's done. The friendships it's created -- I feel like Susan, who's in the program right now, even though I've never met her, it's really enjoyable to be able to sit and talk with her every two weeks with her. So you kind of create a community. Wendy: Yes. And as you said that's so important. You've said it a couple of times and I know I felt that you feel so alone in this disease. I think someone has cancer, everybody seems to understand what cancer is and there's a degree of sympathy that people get with that condition, whereas Endometriosis, I know you had people saying it's an enigma, you've got such a small cyst, why is it causing you so much pain -- you're always being pulled into questioning. You have ot fight to be believed. For people to come together who are going through that -- that's why I start these programs every couple of months with people coming together, starting at the same point and going through it together so you don't feel alone, you feel that you're all in this together and it makes you feel like you can do this. Especially on the bad days, especially on the weeks you're just like "I can't be bothered" and "I really want to give up," because it is a twelve week program and you need to keep going through the program to get through. Joanna: And it's not easy. There's a lot in the book about you. Like, Wendy's telling me to keep doing this and I just want to stop. Wendy: Of course. But that's where I come in. I see myself as your coach, your champion, running along beside you saying, "Come on, you can do this," because I know how hard it was because I've been there and that's why I've created the program with the different levels of support, to say you can do this. And I never said it was going to be easy but it's absolutely worth it to get the results. Joanna: It is. As soon as you get that -- it could take four or five weeks, but it just takes a little change in your pain to realize something's changing, or to be able to come off painkillers. That's a huge thing, because they really don't make you feel great, and you don't realize that until you stop taking them. But yeah, I mean, I'd encourage any woman who, if you just even have periods that just don't feel right, to question it and get it looked at and question everything now. I learned after the natural path thing to even question the supplements and I even find every time I google a recipe or supplement or something, I always put Endometriosis at the end of my search to see does it clear up estrogen. What does it do? Is it a phyto-estrogen? Is it a xeno-estrogen? Wendy: And do you find now because you've got the education, education webinars through the program on the membership site, do you find that you feel more confident now with what's going in your body and you understand it's effect? Joanna: I definitely do. I actually feel like I go in with more knowledge when I go in to see -- so I'm seeing a new natural path now and everything she suggests I say we need to look up how that affects estrogen. She says, "Why?" Because I have an estrogen-dominant illness and I know there are a lot of things that we might not think -- for example, turmeric. They say take turmeric and turmeric is a phyto-oestrogen. So just little things that we eat or put in our bodies. So it's actually been kind of fun to go in and say, "Hey, I actually know this about my disease. This is the type of blood work I need you to test." I didn't mention that the reason she did the DHEA is my bloodwork did not come out that I had extremely high estrogen. She did not look at all of the different parts, I guess, which is what we get from your program and there's no actual estrogen. There's three actual components that make it up and if we had done that then we would have seen. So later down the road, the next blood work, yes, it showed it, but initially it didn't which was why the DHEA was prescribed because "you don't have an estrogen problem." Wendy: Well, that said I think, again, medical profession are trained in a certain way. They're not trained in nutrition. Natural paths don't understand, again, the hormonal perimetar of women with Endometriosis and don't tend to -- what the program does is look at the whole of you, not a one result or a one symptom. It looks at all of the different aspects together and then forms a picture, and that's where, when you and I are working together, we're working together as detectives, Sherlock Holmes going, "Right, let's look at this a bit closer," because there's always a reason why you're getting a symptom or something while you're going through the program. And I think what I've really noticed with you since the beginning of the program is your confidence. Perhaps you could share with people how you felt about coming on just 10 weeks ago? Joanna: I mean, I did not want to show my face. I think we were doing a conference call or something. Yes, I work with children. I can be super outgoing with kids, but when it comes to something like this -- I mean, I'm still nervous right now. Don't get me wrong. You're exposing yourself. You are. And I know this is going to be public, so you're vulnerable, but I feel more happy to share it because you do get that confidence and the excitement gives you that confidence and the knowledge gives it to you. So I want to help other women because, like, I said, I thought I was doing great and it literally hit me. I went one day fine and the next day suddenly -- Wendy: But you were really unlucky because you were doing great and it was just an unfortunate thing that your natural path didn't understand Endometriosis. Joanna: Yeah, but this is even before your book. So last year, it went from super active to Endometriosis hit me hard. That can happen to anybody and you don't realize it. I think it's important as soon as you start feeling symptoms you really start to look into it and what is causing it, what's going on. It's worth the effort on your part as a person to look out for yourself. Wendy: And what would you say to women who are considering the foundation program now? Joanna: I would definitely recommend it. It is worth it. It's worth, if anything, having that support network. I mean, I know you have the advanced program, so I know there's a possibility you're not going to be 100% fixed at the end of the 12 weeks, but what it did for me -- I think we're on week 11 now. We're almost done -- what it did for me, it gave me the tools that I didn't now to have. I wouldn't have even thought to take -- I had never heard of Serapeptase. I had never heard of the protein powders and never considered them. Wendy: I think that's it I think that's what my aim was with the programs, everything in the book. But the program was to give you a toolbag. A toolbag can be the support network, give you multi-learning at different levels. You have the webinars, audios, handouts, downloads, Facebook group, group Q&A calls every fortnight, the one on ones with me. So there was that level of support, because normally people stop off really well with great enthusiasm and they hit a wall or life gets in the way and that's where they need that additional support. Joanna: Yeah, and I think that's kind of hitting the nail on the head. If I have to encourage anyone with the program, it would be you will have moments where you hit a wall and you will feel like it's not working or you're going backwards. It's almost that saying of it's going to get worse before it gets better, and you do go through that within the first couple weeks. Wendy: I'd like to call that being tested. You're being tested as if to say "do you really want to get well?" because this program works if you work it. Joanna: Yeah, and you have to push through. Wendy: But sometimes that's where the support comes in and it's normally six to eight weeks before people start to see the benefits, but it's that combination of factors with one had coming down through the layers of the onion and looking for the core of the information, and on the other hand putting great seeds in to get great roots of nutrition and amino acids and vitamins and minerals. So you're feeding your body with everything it needs to heal itself whilst removing and swapping out what's causing the symptoms. Joanna: And you feel better. Like, food wise, I told you I love food. I love fast food. I love everything, but now we eat so much better and we call it fancy food because you're having really good quality things that you would go to a restaurant and pay $50 or whatever a plate for and it's by no means that much when you make it at home. But you do start eating really well and it can be really fun. It is a really fun journey once you can get past -- stop focusing on your pain and your Endometriosis and start focusing on you getting better. Wendy: Absolutely. I think you told me a funny story about your husband as well. It was a bit funny about the food to start with and then he went out and had some horrible food and then came back and -- Joanna: Yeah. We had been going gluten free and dairy free. I'd cook him his huge meal and 20 minutes later he'd be starving. That's something we learned. Our body is just taking in everything, so for the first little while like 20 minutes in you're like, "Man, I just had dinner and I'm hungry again." But he hated that feeling and he goes, "I need my sugar. I need my gluten. That's what made me feel good!" I said "Okay, there's nothing physically wrong with you. You can go back on sugar and gluten. I don't care. Thank you for being there for me, but I'm good now. You can go back." He went out for a burger or something and he goes, "Ugh, I feel terrible. I'm never eating gluten again!" So he's actually away on a work trip and he's eating all gluten free, dairy free, soy free, because he says he feels so much better. And he's not the one that has an illness. So I think it's good for everybody. Wendy: Well that's it. I think the program does have rippling effects. I know families and partners get involved as well to help support the necessary lifestyle change that needs to be made. It has rippling effects out to everybody, which is fantastic. Joanna: Yeah, and I think when it comes to doctors, the hard thing is you have the foundation but you still have the doctor on the side. And I wouldn't say get rid of your doctor, but I think it's important -- like, what I had to do is I had to really search out a doctor that would listen, and I am blessed now that I am working with the surgeon that did this recent surgery. She's so supportive of me taking the natural route and she knows that my goal is to be as natural as possible. So yes, she would love me to take the medical medications if I agreed to, but she's okay. She goes, "I want you to try everything for you that you feel will work for you and I'll be here if -- " let's say, Wendy's program never worked, then they're there but it works. I can't say it doesn't work. So you need to seek out people that will hear you. Wendy: And I think that's what the aim of the program is, too, to widen your community of support on the other side as well and make sure that you have your voice, know that it's okay to say know, know that it's okay to ask questions because, again, our culture encourages people to be a good girl and a yes girl and kind of "Yes, Doctor. Whatever, Doctor." Too frightened to question and ask. And obviously when you're making that transition away from the conventional medical field and looking at natural routes, it can be a bit daunting, be a bit scary. Kind of take that responsibility. But that's where, again, I encourage women and if they are having to interact with their doctors in any capacity, even if it's just from a reassurance perspective to go "You're still there in the sidelines, aren’t you? Right. I'm going to teach you what is working for my body." And it's wonderful when you get doctors and surgeons -- I had a doctor who started using the same protocols and principals with people in his surgery, in his clinic, and he was emailing me going, "Wendy, this works!" and I'm going, "I know. I've been telling you this for months." It's wonderful when they start to listen, and if they're a good doctor or surgeon they'll be excited for you because the whole ethos of a doctor is to do no harm. That's their motto. Clearly their aim is to heal you, to help you to get better, not to make you worse, so if you are getting better I would hope a good surgeon or doctor who's supportive of your choice to take this route is happy that you're getting better, because surely that's the aim, not to keep you pumped full of drugs and painkillers. Joanna: Yeah, and you will find the ones that are like that, but there are good ones out there and you just have to be willing to let go of the one you have and search out. And you can. I'm sure everywhere there is someone that you can find. Wendy: But ultimately it's all about not having that requirement with a surgeon or doctor. Joanna: Yeah, exactly. Wendy: It's all about you knowing your body better than anybody. I don't care what they're trained in or how many years they've been in the field. It does not interest me one jot because the women I work with, they know their bodies better than anybody else. They have lost that relationship with their body. Joanna: Well, prior to my downturn in June, I didn't go to the doctor for the four months, and I was going a lot before that. So, yeah. And I think one of the biggest things that you've really helped me with is learning to say no to people. Not just doctors. To just people and things in my life, because I think I shared in the beginning of the program -- I love to help. No matter how I'm feeling, I'll say yes. We had a friend move and I was feeling terrible and I went and I helped them move and I remember you saying, "What's wrong with you? Why did you do that?" I couldn't say no. And it's taken me awhile to get there, but it's really important to listen to your body and know when to rest and to know when to tell people, "Hey, I'd love to be there but I just can't right now. I need to look after myself. I'm not doing well. When I'm better, yes, I'll be there." So that's been a really big help, because for women, if you have kids -- I don't have children, but for those who have children, you feel like there's a lot of demand on you. Wendy: Yeah, absolutely. Well, I think you've had an amazing journey so far. I've admired your commitment to yourself even from the beginning to implement the book, and again, just keeping moving forward, keeping being consistent and persistent, listening to your body -- you’ve had life throw obstacles in your path, but you've bounced back and you're living to tell the tale, which is fantastic. Joanna: I feel thankful to you. Wendy: Aw, well it's great working with people like yourself. You're really committed. Because the program doesn't work -- people poke it with a little stick and think it's a fad because it is a lifestyle thing. I refer to it as a new path. It is a pathway that once you're on you can't revert back to eating rubbish, you can't revert back to all the various stuff because then your symptoms will return, but you can see from the photographic evidence, which is so exciting, that if you do make the changes your body responds accordingly, and that's really exciting. Joanna: Yeah, but even without photographic evidence, you were saying like with eating, I have cheated. I've had a bite of something that's got gluten and you feel it right away. Your body starts to talk to you and that's actually pretty neat in itself. Wendy: Exactly. It's having that confidence of knowing what it's saying and what is happening, making those connections. Thank you so much for coming to chat with us today. I know that lots of women will take great hope and comfort from this and this is why I was so pleased that you were prepared to come and chat with me because I think people think, oh, well it worked for Wendy but it's not going to work for me, or it might have worked for the women on her testimonial page -- probably paid them to say that, which I didn't. Previous students as well. Just the very fact that you've had the HSG test, your cysts disappeared, your ovaries are better, your uterus is better, your intestines are better, and even your period. I mean, wow. In amongst all of that your period improved. I felt that was something people would want to hear because it's a lot of people, if they're maybe listening to this in their bed or bath going, "Oh, there's no hope," with all these drugs with terrible side effects I want to see that their is hope and here Joanna is living testament, as I am and other women, and I just want to thank you so much for taking the time out. It was a wonderful chat. Joanna: You're welcome. Thank you for having me. Wendy: No problem at all. Yeah, so thanks very much". Want to get more support and guidance as you start on your healing journey? Order your FREE paperback book ‘Heal Endometriosis Naturally Without Painkillers, Drugs or Surgery’ worth £14.99 at https://HealEndometriosisNaturallyBook.com (just pay shipping £7.95). Or apply to work with Wendy on the 12 Week Online ‘Foundation Program’ at https://HealEndometriosisNaturallyCourse.com
Teaching Bites 2.0 - We help teachers create a more fulfilling lifestyle.
Okay, you have the iPads or shiny new Chromebooks in your classroom. What do you want to do with them? How are you letting your students use them in their learning? Apps? Websites? Which ones are the cools ones today? Okay, you have the iPads or shiny new Chromebooks in your classroom. What do you want to do with them? How are you letting your students use them in their learning? Apps? Websites? Which ones are the cools ones today? Okay, you have the iPads or shiny new Chromebooks in your classroom. What do you want to do with them? How are you letting your students use them in their learning? Apps? Websites? Which ones are the cools ones today? Okay, you have the iPads or shiny new Chromebooks in your classroom. What do you want to do with them? How are you letting your students use them in their learning? Apps? Websites? Which ones are the cools ones today? Sharon and I share our thoughts on what it means to use technology in the classroom in a meaningful way. Hint: It is about the learning! Join us as we figure all this out and more! Transcript [Welcome to the Teaching Bites Podcast. Here are your hosts, Fred and Sharon Jaravata.] Fred Jaravata: Ba-ba-da-bomp-bomp. Sharon Jaravata: Bomp-bomp. Fred Jaravata: Hi everyone. I’m Fred Jaravata. Sharon Jaravata: And I’m Sharon Jaravata. Fred Jaravata: Welcome to the Teaching Bites Show where we connect you … Sharon Jaravata: With people and ideas to take your teaching to the next level. Fred Jaravata: Yes. Sharon Jaravata: Hi everyone! Fred Jaravata: We are recording live from San Francisco on this Labor Day weekend and we really hope you guys are enjoying or have enjoyed when you listen to this your Labor Day weekend, right? I know everyone has started school. Sharon Jaravata: Yeah. Fred Jaravata: And we’re back to the grind. We’re back to the grind and just know, take care of yourself and take some breaks here and there. OK? Sharon Jaravata: Take a day off. Fred Jaravata: If you can. Sharon Jaravata: Not because you’re sick. Fred Jaravata: But also after work, go for a run. Do the yoga class. Get a massage, a chair massage. I think I mentioned this before. Get a chair massage at the mall. Sharon Jaravata: Those are cool. Leave your clothes on. It’s 15 minutes. Done. Fred Jaravata: Yes. Leave your clothes on, please. Well, for me, yeah. OK. So on this episode, we’re going to talk about – real quick about how to use technology in the classroom. Now we know that a lot of schools have started or probably in year one, year two, maybe in year three and four, that they have laptops, iPads, Chromebooks in their classroom available now. Sharon Jaravata: So I actually want to stop right there. So when you say technology, do you mean those kinds of electric devices … Fred Jaravata: Now, let me stop right there. Sharon Jaravata: Yeah. Fred Jaravata: I’m going to clarify that. So let me continue with that. People think that the Chromebooks, iPads – there’s this misconception. Well, I guess the media – everyone talks about technology and rightfully so. When we talk about technology, it’s basically the newest things, right? We think of a technology company, Facebook, Google. The shiny objects, right? We don’t think of Ford is a technology company. We don’t think McDonald’s a technology company. Though they use technology, right? Now technology could also include – let me clarify this – cardboard, a knife, spoons, forks. Those are all technology. Those are old technology. Sharon Jaravata: Pencils. Fred Jaravata: They still work. Exactly. They still work, right? And they still enhance us, right? They enhance humans. They make us do things better. We eat better with a fork and knife, spoons and utensils, right? We cook better with slow cookers and all that. All right? So technology and education almost always means the shiny tablet, the Chromebook and so on. Sharon Jaravata: OK. Fred Jaravata: OK? Sharon Jaravata: OK, good. Fred Jaravata: But how to use it – so I’ve been teaching technology and computers since 2004, right? And I’m an innovation teacher and I’m glad – I’m really glad I don’t have the word “technology” in my title at work and I’m the K8 Educational Innovation Coordinator. Sharon Jaravata: What does that mean? Fred Jaravata: I work with both faculties. There’s a boys’ school. There’s a girls’ school, elementary schools. Girls’ high school group, boys’ high school. I primarily work for K8 and I work with the faculty for boys’ school and faculty with the girls’ school. It’s about let’s say – I don’t know, 60, maybe 70, 75 teachers I work with. Not all the time. It’s all staggered out. I work more with teachers more – more teachers I work with than others. I also work with the students, right? So I teach the students iPad boot camps. I teach them how to use the iPad, how to use – how to get in their email, Google Apps for Education. They also train the teachers in using all that as well. I also nudged the teachers, a friendly nudge to have them start innovating, meaning do something new and different or something new and – yeah, a little different. Sharon Jaravata: Doing something old in a new way. Fred Jaravata: In a new way, instead of doing a word processing – typing up a word processing document, have the students create a podcast. Sharon Jaravata: So that leads into your SAMR model. Fred Jaravata: Right. So going back to the how to use technology in the classroom, I’m going to say in parenthesis [0:04:46] [Indiscernible] in a meaningful way. Sharon Jaravata: Yes. Fred Jaravata: OK. So the thing is in SAMR, I think some of the people may have heard this already. We mentioned it a few episodes ago. The S-A-M-R model and I forget the gentleman who created that – this model. But it’s widely referenced when creating a – or using technology in the classroom. OK? And the other models too. We have the Bloom’s Taxonomy. That’s also referred to and also the 4Cs, the 21st century skills. All right? But going back to the SAMR model, the S stands for substitution. A is augmentation. M is for modification and R is for redefinition. All right? So what does that mean? There is a great info graphic of the SAMR model and they use coffee cups, right? Coffee, right? Say you go to Starbucks or Peet’s or whatever, Blue Bottle. If you have that, great, or Philz Coffee. So S, it’s substituting things, right? So it’s the technology. It acts as a direct tool or a substitute, but no change, no real change. It’s like the cup of coffee. There’s no real change. But when you start augmenting it, OK? The A part, when you augment your coffee, you start adding more function to it or a different – an improvement to it. So instead of just coffee, now you add like steamed milk. It becomes a latte with foam and so what – it’s essentially still coffee but you’re adding – instead of cold milk, you’re adding steaming, frothy milk, right? So you’re changing it. You can see there’s a different texture to it. There’s a different taste to it than regular coffee. Sharon Jaravata: Right. Fred Jaravata: I will talk about the assignments, how that can – how does it look like? Sharon Jaravata: So would you say this is like a continuum maybe? Fred Jaravata: Yes, you can start off with the S and then move on, right? We all start simple and I will talk about that later. But the modification, the M part, it’s where you are starting to allow for more redesign. So instead of a cup of coffee or a latte, now you’re going to start adding like a caramel macchiato. You see how it has transformed? Sharon Jaravata: Because I think – so I used to actually work at a coffee station back in college. Fred Jaravata: Yes. Sharon Jaravata: And I had to make all these drinks and I don’t even drink coffee myself. But I remember – I think a macchiato is where you combine espresso and coffee. I forgot. Fred Jaravata: See? You’re enhancing it now, right? Sharon Jaravata: Yeah. From what I remember, it’s not just straight coffee. We just put it in a machine. Fred Jaravata: Right. You’re doing something more to it, right? It has become different. Sharon Jaravata: Yeah. Fred Jaravata: And then the R, now you are the technology – in terms of technology of the classroom. You’re creating something pretty new, right? Something completely different. So in this example, coffee, like Starbucks pumpkin spice. Sharon Jaravata: Oh, fall. Fred Jaravata: Right. Sharon Jaravata: The fall drinks. Fred Jaravata: Fall is coming. So it’s different now. It has a different taste, a different texture. It’s also for the time, the fall you were saying. So you’re definitely making that different. You’re transforming it little by little. Another way to think about it is – another info graphic by I think Sylvia Duckworth. She made the same info graphic. Sylvia Duckworth, she’s a very popular graphic facilitator. She draws amazing pictures of people’s talks, like TED Talks and so on. She made this little essay on our … Sharon Jaravata: You might have seen her on your Facebook feed or stuff. Fred Jaravata: Yeah, she’s all over the place. Sharon Jaravata: So let me interrupt you. Actually I looked up macchiato just because I wanted to make sure that our audience knows. It is sometimes called an espresso macchiato. It’s an espresso coffee drink with a small amount of milk, usually foamed. So I was kind of right. Espresso, coffee, a little bit of milk. Fred Jaravata: Now you want me to drink some coffee. Sharon Jaravata: OK. Fred Jaravata: Anyway, moving on. OK. So think about – you’re at the beach, right? The SAMR model, how to use technology. How do you integrate technology? We’re using the SAMR model. Say if you’re at the beach. You’re looking out. That’s like – you’re looking into the water. That’s using no tech. Now if you take the boat or the canoe, and you’re rolling across the water, that is using a little tech, right? But now the SAMR model encourages to go deeper. The next step besides – after the boat, you snorkel. You’re going deeper now. Sharon Jaravata: But you’re still close to the water. You’re just under more. Fred Jaravata: And then the next one is modification, going much deeper. So it’s like scuba diving, right? But it’s deep now. Then the last one is redefinition, the R part. It’s taking a submarine going way deep. You’re exploring more. So basically exploring, right? Sharon Jaravata: I like that picture. Fred Jaravata: Yeah, it is a very cool info graph in a way. It defines it really well. So real quick, I don’t have the thing right here in front of me to refer to. So it’s like taking – so S, substitute. It’s just basically – you’re taking the person’s notes or a paragraph that they wrote by hand and you’re just putting it on Microsoft Word or Google Docs. Sharon Jaravata: Or typing it, yeah. Fred Jaravata: You’re just typing it out. That’s it. Nothing special. It’s digitized now. Cool, right? But that’s all right. Now, the augmenting part, now you take that same document, the digitized document now, and you’re transforming it into a PDF. You’re emailing it to people. So now you’re sharing it what way. Sharon Jaravata: So the reach is bigger. It’s not just your classroom. Fred Jaravata: Yes. And then now, you are – the next part is M. After that, you can take a Google doc, typing it out. But now you’re sharing it with others that way. You’re sharing it. Sharon Jaravata: Is that kind of what you just said with augment though? Fred Jaravata: Yeah. But the other one is email. Sharon Jaravata: Oh. Fred Jaravata: Right? So it’s living in your computer. The original document is living in – you email the document out. The M part is where you have a Google doc and you’re sharing it and it’s live. As you make changes, it changes automatically for other people. Sharon Jaravata: OK. And then they can interact … Fred Jaravata: Not yet. That’s going to be the R. Sharon Jaravata: Oh. Fred Jaravata: That’s the redefinition part. Sharon Jaravata: OK. Fred Jaravata: So you’re sharing with other people but you’re not sending this in a PDF. You’re sending a link and as you type – this is the M part – people can see the live things happening. They’re not interacting, not yet. So they can watch it. Sharon Jaravata: So that’s one way. Fred Jaravata: One way still. Maybe there are some differences and you could probably – some experts in SAMR may argue against that and please let me know. The R part now is when you get a bunch of students working on the same document. Sharon Jaravata: In real time. Fred Jaravata: And then – I guess that includes the teacher going in and giving comments on how to improve it. Sharon Jaravata: OK. Fred Jaravata: Does that make sense? I know I went fast and probably I’m tweaking the SAMR model a little bit. But that’s what I remember. But I hope that makes sense. Sharon Jaravata: Yeah. So if I’m a new teacher, right? Do I start with S and then gradually go to R or just try to jump to the R? Fred Jaravata: You gradually – I think as a new teacher, gradually move to the R, right? So you start with S. Yeah, type it out. That’s fine. And then you move into like a – you send it as a PDF. But I think a lot of people have done that a lot already. Sharon Jaravata: I guess it would depend on what you’re doing too, what kind of project or assignment, right? Fred Jaravata: Right. But the SAMR model is great. But I always refer to the 4Cs, 21st century skills. The 4Cs are important because they encourage you – those offer guidelines to add. The Cs are collaborate, communicate, be creative and collaborate. Did I say that right? Sharon Jaravata: Creativity. OK. Fred Jaravata: No, no, critical thinking. Sharon Jaravata: Yeah. It was – I forget too. Fred Jaravata: OK. Critical thinking, collaborate, communicate and creativity. Sharon Jaravata: Yes. Fred Jaravata: Those four Cs, they offer me a guide myself in how to reach my students to do that. I want my students to do those things, one of those things, right? Sharon Jaravata: And sometimes that’s correlated with the common core state standards too. Fred Jaravata: Exactly. And it goes to the Bloom’s taxonomy of – you know, on the bottom of the triangle. Remember, understand, apply, analyze, evaluate and create. These models, they’re all very similar. There are other info graphics to put into each other and how they do relate. They all relate to each other. But yeah, maybe in a different episode, we will talk about Bloom’s taxonomy and how that can be flipped over. I think we mentioned that before. But we will analyze that a little more on a different episode. Sharon Jaravata: Yeah. Fred Jaravata: So there’s a great – another great info graph that has been shared since like 2013 and it’s by a man named – a teacher named Bill Ferriter. You can find him at WilliamFerriter.com. Bill Ferriter https://www.flickr.com/photos/plugusin/9223386478/in/datetaken/ Sharon Jaravata: We will put these in the show notes, right? The info graphics. Fred Jaravata: This is a very good one and it’s also – this is in George Couros who I follow a lot on Twitter and I bought his book. I love his book called The Innovator’s Mindset and he refers to this graphic and after this graphic, he worked with Bill to make a new graphic for leaders. But going back to this first info graphic that Bill made. So it says on the top, “What do you want your kids to do with technology?” OK? And on one side – it’s like a T-square. On one side, you have wrong answers. On the right hand, you have right answers. By George Couros https://www.flickr.com/photos/plugusin/with/9223386478/ So let’s go to the wrong answers first. OK? So what do you want your kids to do with technology? I want my kids – these are running answers. I want my kids to do – to make Prezis. I want my kids to start blogs. I want them to create Wordles. I want them to publish Animoto videos, making video slideshows. I want my students to design flip charts. I want my kids to produce videos. I want to post to Edmodo. I want to use whiteboards. I want them to use – I want them to develop apps, right? Those are the wrong answers of what you want your kids to do with technology. Sharon Jaravata: From what it looks like to me, there’s – for every wrong answer, there’s the right answer that’s correlated across to it. So for example, the wrong answer is make Prezis and the right answer is raise awareness. Fred Jaravata: Exactly. So what is Prezi? Prezi is just a fancy PowerPoint. It’s a fancy keynote, right? You can go zoom it in, zoom out. I get like seasick when I see that stuff. If it’s don’t really bad, you know. But yeah, Prezis or presentation apps or keynotes. I want my kids to do PowerPoint. It’s just basically just raise awareness. Sharon Jaravata: So the wrong answers are if – if you guys haven’t figured out, those are the tools that you use in which to extract these big ideas. Fred Jaravata: So the big ideas, the right answer – let’s go to the right answers, the right way to use technology and the info graph by Bill Ferriter. You want them to raise awareness. You want them to start conversations. You want them to find the answers to their own questions. You want them to join in partnerships. You want your students to change minds, convince others. So a lot of communication is important. Sharon Jaravata: Persuasive writing. Fred Jaravata: Right. You want your students to make a difference. You want them to take action and you want them to be agents of change or drive change in the world. So these are our huge, big ideas, right? These aren’t tools we’re talking about. Technology are the tools to do all these big ideas. Sharon Jaravata: Right. I think the thing is – because a lot of the teachers, they see or hear that oh, look at that school. They’re doing – they’re using all these shiny tools. Then maybe I should be doing that, but not really understanding that – what the purpose of it is, right? Fred Jaravata: Sometimes a lot of my faculty and my colleagues – I love them to death, but sometimes they’re so fixated on the app. Oh, I saw a cool app. I saw this cool app. It can do this, this, this, this. Cool! That’s great. I always support them. But I also tried to make sure – what is the learning goal? What do you want them to do? I’m glad you found a great app. There are always great apps out there. But they still need to support learning. All right? There’s another info graphic that continues this, the George Couros. He talked about this and another info graphic was created for this. The question is, “What do you want leaders to do with technology?” OK? Now, the shares on the left hand side again like a T-square. So good answers. Sharon Jaravata: I think you mean T-chart. Fred Jaravata: A – what did I say? Sharon Jaravata: T-square. Fred Jaravata: OK, T-chart, sorry. What do you want to do – what do you want leaders to do with technology? Some good answers are like I want – you want them to tweet. You want them to use Google apps or Office 365 or whatever. WordPerfect, if you’re still on that. Write a blog post. Sharon Jaravata: It’s still around? Fred Jaravata: Yes it is actually. I guess the legal people, the legal professionals, they use WordPerfect. Sharon Jaravata: OK. Fred Jaravata: You use Learning Management System, the LMS. You want to publish a video, text reminders, blah, blah, blah, develop a website. The better answers are you wanted to build relationships. Technology is for building relationships. That’s the key right there. You want the leaders and your students to build relationships and that’s where technology is very powerful, right? Yeah, you can – I’ve seen teachers use – what is that? Flat Stanley? Remember that? Flat Stanley. Sharon Jaravata: The character. Yeah, from the book. Fred Jaravata: And then they use an envelope or a cardboard or whatever, one of those big interoffice envelopes. Sharon Jaravata: Manila envelopes. Fred Jaravata: And then they send it around the world, send it around the country and they – the whole – they share. Where would it go, right? Where did it go? That’s cool. But now, you can only reach one person at a time. It’s very short or you have pen pals, which is great, right? It still works and I still encourage that. But – so you’re building relationships and there’s something said to be – having handed to – with the real envelope. Sharon Jaravata: Yeah. Fred Jaravata: Right. Handed a note, right? Sharon Jaravata: Uh-huh. Fred Jaravata: But you can accomplish pretty much now today that – the building relationships with an email, as long as you write the email in a proper way that’s empathetic and that’s actually personal, right? You can send that email. You could tweak it and personalize emails. You can send to a hundred people at one time, right? You just change the name. Sharon Jaravata: Just click it. Fred Jaravata: You can click it. But I advise you, you had to personalize each one. But you can send it and it goes boom! It goes out all over the world, wherever you want to, right? Sharon Jaravata: Yeah. Fred Jaravata: That’s another way of using technology and how powerful it can be. But here it is. Whatever you do, when using technology in the classroom, make sure it’s meaningful. All right? Make sure it’s simple. Don’t get overwhelmed with it because you can have all these – thousands of apps are available. Sharon Jaravata: Well, start small, right? Fred Jaravata: Right. And my favorite app, people, I’ve said this before, over the past couple of years – years of using – in this podcast, the Camera is my favorite. OK? Because you can slow mo, time lapse. You can reverse it, replay back. You can slow mo backwards. You can share it. You can make movies. You can do tutorials. The Camera is the best one. OK. I have this thing, the three Es. I have these things with 3Es, 4Cs, blah, blah, blah. I always say things like that. Sharon Jaravata: Well, we know teachers. We have all acronyms and short cuts. Fred Jaravata: I like this acronym, the – it’s not an acronym but the 3Es helps you remember. Make sure that the technology you’re using – or anything really. This goes beyond the lesson. Make sure that your lesson or your – the technology is effective first thing and then make sure it is efficient. Don’t go all over the place. Make sure it’s efficient unless you have some kind of design in a way that’s kind of complicated. But overall, keep it efficient and lastly, keep it elegant. What does effective mean? Make sure it works. What does efficient mean? Make sure it’s not too many steps, right? What does elegant mean? It kind of has to be designed well, right? It has to be designed well. So you can flow easily from one task to another. You’re elegantly moving from one app to another app, to another app, to the person where you want to do – or the learning outcome you want to do. So it has to flow well. That’s the elegant part. Sharon Jaravata: So I guess I can also – so maybe it means it just makes the experience for the user or the audience smooth, right? Fred Jaravata: Yeah, a smooth experience. It has come down to it. Yes. For the creator, for the receiver, the person you’re trying to reach. Have an elegant solution to that. Sharon Jaravata: So would you say that’s also a continuum, like in order? You could try to do the first two first, like efficient … Fred Jaravata: Yeah. Sharon Jaravata: And effective first. Fred Jaravata: Yes. Sharon Jaravata: That’s the most important. Fred Jaravata: Keep it. Yeah, make sure it’s effective. It would be clunky though. If it’s effective, it can be clunky. Sharon Jaravata: Yeah. Fred Jaravata: All right? Again, that’s how you – make sure you use technology in the classroom in a very – in a meaningful manner. All right, folks. Sharon Jaravata: Yeah. Fred Jaravata: I talked a lot today. Sharon Jaravata: Full tips, yeah. Fred Jaravata: All right. Let me check. OK, yeah, I did record this. I’m glad. Sharon Jaravata: Can you imagine if we do it again? Fred Jaravata: That’s my biggest fear. You know, podcast people. I think I’m recording and we’re talking and talking and talking. So many knowledge bombs but they forgot to punch record. Sharon Jaravata: So far I’m not going to worry. It has not happened to us. Fred Jaravata: Not yet. All right, folks. Make sure you subscribe to our show. Thank you for joining our show. Make sure you share our show with other teachers. We’re getting a lot of people every day listening to our show and we’re very, very grateful. We’re here to serve you. If you have any questions, please email me at Fred@teachingbites.com. Sharon Jaravata: And you can email me at Sharon@teachingbites.com and of course find us on our website TeachingBites.com. Fred Jaravata: In all the social media, we’re out there. Sharon Jaravata: Yeah. Fred Jaravata: All right? Sharon Jaravata: OK, everyone. Have a good day! Be super! Fred Jaravata: Bye. Sharon Jaravata: Bye.
Teaching Bites 2.0 - We help teachers create a more fulfilling lifestyle.
Coming live from Atlanta, GA at the Association of Technology Leaders in Independent Schools Conference! On this special episode, I interview Leigh Northrup from the Cannon School in North Carolina and Nicholas ColeFarrell from the Brandeis School in San Francisco and we discuss what maker spaces in schools is all about and why and how it can be a game changer. I never met either Leigh or Nicholas in person prior to this conference. Leigh and I only “met” a few times on our Skype planning sessions for our deep dive presentation called “Leading Cultural Change From Within Your School Makerspace.” Nicholas also presented, not only once—but twice! Here is our deep dive presentation slides for you to check out! I think you’ll enjoy this experience as we went to a local bar sitting in the beautiful Atlanta spring weather and chat about their experiences as presenters and attendees and what interesting things they saw and heard and what take-aways they had. It’ll seem that you’re sitting with us as you hear the ambient sounds around us. I want to give a shout Howard Levin, our Director of Innovation and Technology at our school, Convent & Stuart Hall, Schools of the Sacred Heart of San Francisco and Sarah Hangawald and Kelsey Vrooman and the rest of the team at ATLIS for making this work. Big ups to my new friends and peers who I met at this conference. I hope to get their stories on our podcast someday. Check out the #ATLISac on Twitter for all the tweets that came out of the conference. ATLIS 2017 will be in Los Angeles, CA so stay tuned at http://www.theatlis.org/ You can find both Leigh and Nicholas on twitter as @LeighNorthrup and @ncolefarrell Transcript Fred Jaravata: Hey everyone. Fred here. I’m in Atlanta, Georgia for the ATLIS Conference, the Association of Technology Leaders and Independent Schools and today, I have two very cool guests. I’m supposed to have three but I have two right now. We have Leigh and we have Nicholas and I’m going to give them the time to introduce themselves but it’s really cool what they’re doing. They’re doing amazing things and as part of our tagline, we want to help you, you teachers out there to take your teaching to the next level. OK? So let’s start off with the first, Nicholas. Nicholas Cole-Farrell: This is Nicholas here. Although there are only two guests, Leigh and I have the strength of 10 men or 10 people in that way. So really you’ve got like 20 guests here. Fred Jaravata: Nice, OK. So quick intro, so tell us what you do and – yeah. Nicholas Cole-Farrell: Sure. So my name is Nicholas. I’m Director of Technology at The Brandeis School in San Francisco, a fellow San Franciscan like my man Fred and … Fred Jaravata: But we never met before. Nicholas Cole-Farrell: No. Fred Jaravata: So it’s great. This is the first time we met. Nicholas Cole-Farrell: We’re internet friends. So this is kind of IRL time for us, which is nice. But yeah, no, we run an awesome technology program and a tinkering and making program there at the Brandeis School and yeah, we’re really excited about me being here and about the work that’s happening and about the work that Fred is doing. It’s really nice sharing our ideas on the podcast. Fred Jaravata: Very cool. Nicholas Cole-Farrell: And we’re just setting up a podcasting studio ourselves and we’re podcasting, so it’s good to be on this. Fred Jaravata: Very cool. And our next guest. Leigh Northrup: Hi. I’m Leigh. So thanks Fred for letting me be a part of this today. I’m from Concord, North Carolina which is just north of Charlotte and got the really cool opportunity to do a deep dive session with Fred. So we kind of had the coastal connection working with North Carolina and California. But I’m the Dean of Innovation and Technology at Cannon School. It’s a JK through 12 independent school. Been there for 15 years and – did I give my title? I’m the Dean of Innovation and Technology. Fred Jaravata: Yes, you are. Right. Leigh Northrup: And I run a big maker space there. So I haven’t always done that. I’ve been kind of the middle school tech guy for a long time. So like any teacher in an independent school, I wear lots of hats, lots of coaching, lots of everything. But really my primary focus right now is getting a really awesome space up and running and doing some cool stuff with kids in there. Fred Jaravata: And you guys are doing amazing things. I’m watching your presentations and you guys are doing amazing things. It’s making me wanting to take my teaching to the next level. So you guys presented and Leigh and I, we presented together and actually, you Nicholas, you presented twice at this conference. Nicholas Cole-Farrell: Yeah, one definitely better than the other. No, just kidding. So yeah. Fred Jaravata: Tell me about the experience, the whole experience and the title of it. You don’t have to go deep in it, but at least quickly just go over what you did and how it felt. Nicholas Cole-Farrell: For sure. So yesterday, we presented on early maker space implementation and I was like – you know, have to be teamed up with the crew from the Iolani School in Honolulu and … Fred Jaravata: Iolani in the house. Nicholas Cole-Farrell: Yeah, absolutely, those students. That school is just phenomenal, absolutely phenomenal. They’re doing such exciting stuff there. In a way, it was just sort of like I was kind of the – it was my presentation and then like I spent the rest of the time scraping everyone’s jaw off the floor when they saw Iolani’s work, which is super awesome. But we talked about really like the approach behind sort of like maker space and some of the pedagogical and curricular aspects of it and then we shared three case studies based on the create-build space we have at Brandeis and then the two spaces they have at Iolani. So it was really nice to kind of get in with them and work on it. Fred Jaravata: How did you guys connect? How did you guys – was it through Skype? Nicholas Cole-Farrell: Yeah. So we hopped on Google chat a few days ago or a Google Hangout. But we’ve been sort of sharing on a Google slide presentation and sending emails back and forth and figuring out what that workload was like. But it was super seamless and we all just kind of jumped in and threw our slides in, put them on a common template and then checked back in every once in a while. They have to work right near each other, so I was kind of the oddball out in California. Fred Jaravata: Hey, that’s cool. I think one of the things about teachers, we need to collaborate, right? It’s good to collaborate outside and technology has really made us closer that way. Nicholas Cole-Farrell: For sure, for sure. And it was really good to sort of figure out what their workflow was. I kind of had my own ideas of how we would go about it and I think they did too and we kind of met each other in the middle and really worked and it was super cool. Other than the time difference which I think you guys … Leigh Northrup: Oh, yeah. Nicholas Cole-Farrell: It was tough to kind of schedule that out. But yeah, no, it was a super positive experience and I tell you what, an hour and 45 minutes goes so fast, right? So we were like, “How are we ever going to fill up this time?” and then after an hour and a half, we’re like, “We can have three more hours and still fill the time.” So yeah, there were a lot of great ideas generated at the session for sure. Fred Jaravata: Awesome. All right, Leigh. We presented together but I’m going to get your perspective and how our job went. Leigh Northrup: I think it went great and Sarah Hanawald, the Executive Director of ATLIS kind of was selling this to me last year and she’s like, “I really want you to present at ATLIS. I’m going to connect you with somebody really great and you’re going to learn just as much from the experience as you will be able to teach.” Nicholas Cole-Farrell: And then you got stuck with Fred. Leigh Northrup: I did. Fred Jaravata: Yeah, I know. Leigh Northrup: I’m still mad at Sarah about that. But all kidding aside, like she was absolutely right. The opportunity to connect with somebody on the other side of the United States and be able to share ideas with and not just learn but also have – feel very validated with what I’m doing was very – very close to what Fred is doing and we would have a lot of moments where we were saying, “Oh wow! I do something very similar in our space!” and we just had a lot of fun kind of connecting that way. So our presentation was actually on leading cultural change through our maker spaces and a lot of maker spaces are going up and people are popping them in and a lot of school leaders are like, “Oh, we need a maker space because the school down the road has a maker space,” and anybody can go out and buy a couple of 3D printers and put some whiteboard paint on the wall and some rolling chairs. Fred Jaravata: Like today, right? Leigh Northrup: Yeah. Well, I’ve got a maker space. Now I can put that on my website. But it has to be more intentional than that and that’s what Fred and I were trying to convey in our session was OK, now you have the space or you’re getting a space. But what’s the point of the space? How are you going to help these kids learn in that space and what are you going to actually teach them to do? Because you know what? Just the cool stuff that’s on the table, that you’re using to make or have made, is worthless unless the kid learns life skills through that process. So that’s where we got going and the session was interesting. I mean we planned it for three months and it didn’t really resemble what we set out to do. But we have always said part of that whole maker experience is being able to adapt to different situations and being able to get into a room and be like, “Oh, I don’t have that material. I need to make this different material. Whatever are we going to do?” That’s what we did in that presentation. We saw the room and we actually just really had a fantastic conversation with several other really awesome educators in our presentation and learned a lot from them and hopefully they got something out of the presentation as well. Nicholas Cole-Farrell: There was a pretty good audience there. So especially there was one person there that was pretty awesome … Fred Jaravata: Yeah, that’s the one thing. It’s like we share what we know. But what I’ve learned also, it’s also about the – you see the similar things. Everything is familiar. We’re doing very similar things, very familiar things. But it’s like not déjà vu but the other way around, [0:07:52] [Indiscernible]. Have you heard that term? It’s like you’re taking something familiar but seeing it in a new light. So it was just like that for me. [Crosstalk] Fred Jaravata: Yeah, probably. By the way, we are at a bar drinking beers. So we’re … Nicholas Cole-Farrell: Seltzer, seltzer, we’re all drinking seltzer. Fred Jaravata: It’s OK. This is the unprofessional development podcast. Nicholas Cole-Farrell: But yeah, no. Again, it’s like there’s that moment and I think you guys experienced that. I experienced it with both of my talks. It’s sort of like not only are you sharing out ideas, but you’re also kind of like, oh yeah. Like other people are saying this too. This kind of validates the work that I’m doing and we had that with my second talk today. We did one on getting things done in education and it was just sort of like one of those roomful of – yes, it’s like a roomful of nods. Just like a bunch of folks are smiling and nodding and like it was the most awesome disruptive classroom where people are just calling out and raising their hand and folks are really like well-behaved at first and they got bold and it was super cool. It was just like – it was a really fun session that we did and that and folks really kind of were like, “This is what I needed.” Somebody was like, “This is the best session ever!” I was like, “Don’t say that too loud.” But it felt really good to have – like have other folks being like, you know, nobody is really talking about this and figuring out like, you know, that – you know, I don’t necessarily have an answer to these questions. But if we start the conversation, that’s the part. I feel like in your session, you guys really hit on that. It’s like there is no answer. But we just need to be talking and that to me – when that theme starts coming up, it’s like, OK, the work that we’re doing is pretty righteous for sure. Fred Jaravata: All right, gentlemen. So guys, what’s one thing or one cool thing that you saw, that you experienced besides your talk at ATLIS 2016? What’s one thing you will take back with you? Leigh Northrup: I think the emphasis on coding and programming and I use those words a lot in my space and I’ve obviously adopted a lot of those things because all those tools are great. But unless you’re learning how they work and you’re teaching kids how to make them work, they’re kind of useless and seeing – getting a feel for what other people are doing with programming and not just sitting down and coding and making the ball go from one side of the screen to the other, but actual flying drones and making – like doing cool stuff with what we know. It’s not just making LED lights turn on and off. They’re practical application with something that … Fred Jaravata: Some purpose. Nicholas Cole-Farrell: Yeah, and that’s like – the plus one on that is that idea of like not only just coding by computational thinking and figuring out how – like what that looks like in a larger context. It’s like we’re – you know, we’re not going to fool ourselves and think that all of our students are going to be programmers or coders. But if they have that familiarity, but they also have done that development in terms of shaping the way that they think about learning and computational thinking. To me that was like what Dr. Stager’s session was this morning. It was like right there and for me definitely, Sylvia Martinez’s discussion, equity and access and women and [0:11:09] [Indiscernible]. That’s such an important conversation to have and like her thanking us as men for being in the room. It’s like yeah, obviously we’re going to be … Leigh Northrup: It’s a no-brainer. Nicholas Cole-Farrell: This is a completely important thing and it’s our responsibility as technology leaders to start that conversation and to keep that going at our schools. Fred Jaravata: Right. OK. So how do – now I’m going to go beyond ATLIS and going back to your worlds. Quickly, how do you guys engage your students? How do you motivate your students? How do you motivate them? I think this is one question a lot of teachers want to know. They’re always asking. But how do you do that especially in today’s world? Nicholas Cole-Farrell: Yeah, I mean I think the simplest – I’m sure Leigh will be with this too, but it’s like just this idea of asking your students questions, right? Don’t just go in and be the – try to be the smartest person in the room. That’s not the job of an educator by any means. So whether it’s like inquiry-based learning, whether it’s – just simply asking them and checking in with students, get – you know, get down on your knee and be like, “What’s going on?” and engaging with students on their level. Like to me, that’s the best way to engage your students. It’s like how is it going? We did this project with the Shadow a Student Day a few weeks ago where I followed an eighth grader around for the day and it was just the most phenomenal day. Fred Jaravata: Oh, you did? OK, that’s cool. Nicholas Cole-Farrell: I did gym class. I got changed for gym and I did gym class. Fred Jaravata: The teachers knew this. Nicholas Cole-Farrell: Yeah, yeah. Like, you know, teachers would come up and they would be like, “I’m sorry. I’m not Mr. Cole-Farrell today. I’m Nicholas. I’m an eighth grade student. I just transferred here.” Fred Jaravata: That’s a really cool idea. Nicholas Cole-Farrell: It was phenomenal and it was really an empathy project. But like for the first few classes, our students were like, “Oh, he’s just spying on us.” I’m like no and then the teachers were like, “He’s spying on us.” Like, no, no, I’m just trying to get a feel for what the day was like and like for me, there were so many insights of like this is like the minutia of an eighth grade student and this is what it’s like – it’s like you know what? When there’s no passing time to be – between classes, that’s really hard. It’s really hard to get to your next class on time. So yeah, so something like that to me, like engaging the students. Like the key is just like asking them questions and showing like interest in the work that they’re doing. Leigh Northrup: Mine from like a – more of a maker space perspective is giving them opportunities to do what they want to do. One of our school focuses this year, it’s part of our adaptive expertise traits but also a big piece of what we paid special attention to this year. It was autonomy and giving those kids the opportunity to come in and just do what they want to do and if kids aren’t screwing around, they’re usually doing something pretty cool. If you give them the opportunity and the tools and you say – you show them that there’s some worth to what they want to do. A good example of that is I had some kids that wanted to do hydroponic plants for this year. So when they came in the following week, I had over $300 worth of equipment so that they could build a big hydroponic planter. I think that they talked about it but then they were kind of almost expecting, oh, that would be something that we could do but will never do because nobody is going to believe in us and then all the piping was sitting there and now the kids have hydroponic salad bar day every Wednesday when we harvest the lettuce from their planter that they’ve created all by themselves. Fred Jaravata: That’s awesome. As a teacher’s perspective, how do you vet that? How do you trust the kids will do that? How do you do that? Leigh Northrup: Well, the follow-through is something big and I always put a tough task in front of one of those things. So I had some kids that wanted to do a – and this sounds a little silly and definitely not one of the most engaging maker space projects we’ve ever talked about. But they wanted to build a Pokemon website. Eighth grade boys want to build a Pokemon website. Nicholas Cole-Farrell: Why wouldn’t you? It’s phenomenal. Fred Jaravata: Wow. OK, cool. Nicholas Cole-Farrell: Yeah. Leigh Northrup: And I said to the guys, I was like, “Are you going to follow through with this?” Oh, yeah! Like, how many times have we heard, “Oh yeah! I’m going to follow through with that Mr. Northrup.” So what I made them do is write me a proposal because to get all that stuff hosted outside of like Google sites and things like that, it’s pretty expensive and they wanted their own domain and obviously I was going to pay for it. But I wanted them to prove to me that they were serious about it. So I made them do a little bit of paperwork and I made them do a little presentation and they followed through and they showed me the 350 Pokemon cards they were going to be able to talk about and all of those things. At the end of that time, I was like, “You got me!” Like, OK, you’re good. Fred Jaravata: You’re passionate. You love it. Yeah. Leigh Northrup: And you know what? Even if that project falls on its face … Nicholas Cole-Farrell: How could it though? Come on. Leigh Northrup: Well, it can. It probably will. Fred Jaravata: You’ve been there, right? Nicholas Cole-Farrell: I can’t have a dot Pokemon domain. If not, we should like rally for it. That’s pretty awesome. Leigh Northrup: We should and the other flipside of that, because that was the kind of success story. But back to the hydroponic planet, one of them was the aquaponic and I had an eighth grade boy that – he was like, “Oh, we need to do fish!” Once he saw this thing coming in, he was like, “I want to do an aquaponic planter.” I’m like, “All right.” I’m not going to use any names here but I’m like, “All right.” The exact same exercise. I want you to write me a proposal about how often you’re going to clean it, how you’re going to feed it, how you’re going to check the chemicals because Mr. Northrup does not want a fish tank in his room at all. But if the student was going to do a lot and lead a club or something like that, I’m totally in. So the first week went by. I was like, “Where’s your proposal?” I’m working on it. Needless to say, I don’t have a fish tank in my room. Fred Jaravata: Right. OK, good. Leigh Northrup: That proposal never amounted to anything but once they saw that – you know what? Making something awesome is hard. Like, it’s not just something that somebody is going to hand you on a plate. There’re going to be some effort involved and once kids understand that and they realize, “You know what? You better take me seriously.” I’m going to take you seriously. Cool things can happen. Fred Jaravata: Right. Nicholas Cole-Farrell: Yeah, for sure, for sure. Fred Jaravata: That’s awesome. I got to try that. I got to do that. Hard work upfront. Nicholas Cole-Farrell: Yeah, yeah. It’s like give me your elevator pitch. Fred Jaravata: Yeah, exactly. Leigh Northrup: Yeah. Fred Jaravata: OK. So give me a “ta-da” moment, a “ta-da” moment that you in your teaching – something that really just like blew yourself away. Like, boom! I want to try this – something cool. It doesn’t have to be that big, but something like, OK, this is good stuff. Your “ta-da” moment. Leigh Northrup: Right. Nicholas Cole-Farrell: Give me a minute. Leigh Northrup: I just say the … Nicholas Cole-Farrell: Yeah. Fred Jaravata: All right, cool. Leigh Northrup: I got one that I can go with. Fred Jaravata: OK, all right. OK. All right, Leigh. Go for it. Leigh Northrup: So I apologize you guys because we kind of talked about this yesterday in the session. But one of the “ta-da” moments for the Cannon School this year in our space was the creation of a quadratic sound diffuser and the kids made it out of cake cups. The kids worked really hard for six weeks and this is going to be the abbreviated story. Hopefully Fred will put some email information or some Twitter stuff on there. Fred Jaravata: Well, actually, I will put your contact information and people can get in touch with you. Leigh Northrup: Cool. If you’re more curious about this project, I would love to talk to you more about it. But the kids built a quadratic sound diffuser out of recycled cake cups to solve some problems and turned out to be really cool and over the course of six weeks, they built a quadratic sound diffuser and they cleaned out 1800 cake cups to make this and they worked really hard and they talked to math teachers what a quadratic formula is and they made it and they had – they knew exactly what they were doing and the built it and then they tested it and they realized that it actually made the room louder. What was so cool about that is that in independent schools, when kids work hard and they do everything right, they’re expected to be rewarded with an A and that’s not the way the world works. To teach these kids or give them opportunities to fail even though they did everything right is in my opinion one of the most powerful opportunities we can give a kid because then they finally learn that it’s not about the grade. It’s not about the validation that OK, they did it correctly. It’s about the learning that went on before the result was achieved and just some really special learning moments came out of that. The kids, they were actually little scientists. Like – and we had the conversation. What awesome thing ever worked the first time? Like, nothing ever works the first time! And they got to experience that firsthand, which was really cool. Fred Jaravata: Well, they got that out of the way. That failure, they got that out of the way and then they can start getting better and better and better and faster. Leigh Northrup: How many times as adults have we failed? Like we fail constantly. Fred Jaravata: All the time. I failed waking up this morning … Nicholas Cole-Farrell: We [0:19:38] [Inaudible]. Fred Jaravata: That’s awesome. Really cool. Nicholas Cole-Farrell: Yeah. That was awesome Leigh. I feel like mine – I got a rinky-dink one compared to that. But for me, we’re setting up our build space, which is our sort of woodshop high def prototyping studio this year and we’re setting up with sixth through eighth grade students who were there and elected and one of the tools we brought in was a scroll saw and some of the tools we definitely specifically designed to bring into our studio and that one was sort of like – yeah, that looks like something we should have. For my own part, I will say there wasn’t much planning behind that. But it looked pretty cool. So we brought it in and three students unboxed it and set it up, which is awesome, followed the instructions, built it and then they said, “So how do we use it?” and I kind of raised my shoulders and said, “I don’t know.” Fred Jaravata: I don’t know. Nicholas Cole-Farrell: And it was like I don’t know but there’s a “how to scroll saw” book arriving next week and they’re like, “OK.” So this was Friday and the book was due to come Monday. They looked at each other. They pulled out their phones. They went on to YouTube and watched the video on how to scroll saw and like the sort of like new Yankee workshop, this old house type video came on and they watched it. They watched about seven minutes of it, put the phone down, grabbed the piece of wood and immediately started scroll-sawing and cut out their names in a piece of reclaimed redwood and that happened within probably about 30 minutes and it was like, OK, that’s what learning looks like. It looks like me not being scared of not knowing and them taking action and knowing that they have the agency and the tools to do it. To me, that’s the “aha” moment of like, yeah, this is what learning looks like in the maker space. Leigh Northrup: One of the things we talked about in our session yesterday was the whole maker ethos and one of those is do it yourself. Like, don’t wait for Nicholas or Fred or Leigh to show you how to do something. Just go figure it out. Like, we didn’t have YouTube when we were growing up. Like, oh my gosh, the trouble I could have caused with learning how to do different stuff would have been awesome. But now kids are just constantly waiting for the teacher to tell them what to do next and we have to stop that. I totally agree with you in that moment. Nicholas Cole-Farrell: To me, it was like this is learning. This is what learning looks like in this space and like in hearing your session yesterday, it’s like yeah, yeah, that’s it. And that’s – to me, like that’s one of the common themes of like when you empower students, I mean you give them that agency. They’re going to take that action for sure. Leigh Northrup: Well said. Fred Jaravata: That’s awesome. That’s great. All right guys. A couple more questions left. All right. So time-saving tip. How do you save time? I know you Nicholas had a getting-things-done type of flow. Nicholas Cole-Farrell: Yeah, I don’t want to waste your time with that, but yeah. No, we did … Fred Jaravata: But give me a time-saving tip though for like teachers that they can take now or consider for next year, something that will save them time. Nicholas Cole-Farrell: Yeah, yeah. For me, it’s about – I have two because like – you know, what? I’m not just going to follow the rules. But one of the things I do is like we like to calendar time into our schedule to do specific things. Like say, you calendar time in to do a project or calendar time in to read a book and especially with classroom teachers knowing that their time is really tight. Like be really disciplined and really like set your time and be like this is my time and it just will not be interrupted for this. The other thing we do is like we really like to try scheduling mail. So like working towards inbox zero and if there’s a mail that you’re not ready to process, schedule and have it delivered to you at another time and that will like free up sort of your … Fred Jaravata: Is there an app for that? Nicholas Cole-Farrell: Yeah, I mean there are a lot of different apps. So like I use Airmail on iOS. Mailbox before it got – you know, before they put it in the ocean and that one worked really well. But any app that you can have boomerang. I think on Gmail, on the web works. But if anything that you can do to sort of clean out your inbox and get it as low as possible. The line we say is, “Your inbox is not your to-do list.” Fred Jaravata: Right. Nicholas Cole-Farrell: So really figuring out how you can manage. Your brain is only set to do a certain number of things and as clear as you can keep that, that’s where your ideas can come from. Fred Jaravata: That’s awesome. Leigh Northrup: It’s so awesome and I just got like two ideas from you because I am such a time-waster because I love to tinker and I love to play and so … Nicholas Cole-Farrell: It frees up time for me to do that. Leigh Northrup: Oh, the new toy comes in and I see the box come in and I’m like – I know I have to do that. But I don’t want to do that. I want to do this and being able to kind of calendar my time and I’m going to re-listen to this podcast and try and reflect on some of those things. That’s really good and I’m going to go in a completely different direction and again, I know I keep coming back to the whole maker space concept and that’s much bigger than that. But a lot of making takes prep materials and a lot of – you don’t really have the time to cut every piece of wood, to drill every hole, to cut every piece of PVC when you have 80 kids coming in for a 45-minute class period. We talked about proving worth to teachers and things like that. They need to be able to see that their kids can come in, make something and their curriculum is enhanced and it has to be done quickly. If their impact is one day’s worth but that project takes four classes, then all of a sudden, teachers are like, well, I will dedicate one class period per year to the maker space because that’s all they can afford to give. So I have to do a lot of that work upfront. So my kind of time-saving tip is I have a group of – and they’re boys, which I know is stereotypical but I have an eighth grade maker space prep team, which I say prep team assemble. You know, that’s always the subject line. These little boys, they just want to do – they’re like little worker bees and they just – they come running at their study hall and they’re good students, so they can afford to miss it and they just – they’re like, “All right Mr. Northrup. What do you need?” I need 80 four by four pieces of quarter-inch plywood cut and poof! There it is like by the end – at 30 minutes and these guys are just like making widgets and they’re just so excited to be a part of it and the next day, when those kids come in and all of those pieces of Plexiglas are cut, all of those pieces of wood are cut, the holes are drilled and I’m not taking anything away from the experience that those kids are having the next day because they just kind of get to focus on the learning, on the making and the learning. But they don’t have to do the meaningless prep work associated with it. Boys have like a sense of pride. They’re like, “I did that. I made that big pile of equipment that you guys are getting ready to make cools tuff with.” So yeah, my maker prep team saves me hours every week. Fred Jaravata: And then other teachers are not in the maker space but they can use other – they can think of that concept and have other – their students do something else, have something else. Nicholas Cole-Farrell: Yeah. My wife tried to have students grade her tests and that didn’t go so well. Fred Jaravata: All right guys. Last question and this is a big one. What is the best advice you can give teachers? What’s the best advice? Nicholas Cole-Farrell: We love you. That’s the best advice, really. No, just keep going. Keep going strong. Know that you’re supported by your administration, by your leadership and by your students. Your students really need you and the work that you’re doing is really – you’re doing God’s work really. You’re doing – teachers are doing the most phenomenal work out there. So as a school leader myself or administrator, I really appreciate all of what our teachers did and as a – about to be kindergarten parent in another district. I really appreciate what those teachers are going to do for my kids. Leigh Northrup: I’m going to quote – because I want to piggyback off that and Vinny … Nicholas Cole-Farrell: For the Vin. Leigh Northrup: For the Vin. He told me last night as an administrator. Be the black. Nicholas Cole-Farrell: Yeah. Leigh Northrup: I was really touched by that because I – he was talking about we want our teachers and our kids to be stars and to shine brightly. But as administrators, we need to take a step back and be the black that’s behind that because those stars don’t shine brightly unless they’re pitch-black behind that. Nobody notices. Nobody says, “Oh, that star is beautiful because of the black,” and again, I’m just totally stealing his words from last night because I was really touched by that. But we have to do all of that prep work, all of those long nights so that our teachers can show up and just have these dynamo moments. Like, I – my seventh grade science teacher rolled in and there was a nine-foot beach ball in there and a 3D printing project that I had worked countless hours on. You know, have the kid that just showed up and saw the nine-foot beach ball and he literally stopped in his tracks and he goes, “I love science!” He just looked at her and he looked at his teacher and he was like, you know, just thankful of this opportunity. He had no idea what we were going to do with the beach ball. He had no idea what was going to happen today, but he knew he was in the maker space and he knew that there was a nine-foot beach ball hanging from the ceiling and he didn’t care what he was doing. So I felt like that was an opportunity where I got to be the black. I got to just be – I got to sit back and watch this teacher shine and watch the student be totally engaged with learning. Fred Jaravata: That’s awesome advice, gentlemen. Nicholas Cole-Farrell: And keep listening to Fred’s show. It’s awesome. Leigh Northrup: Yeah, that’s actually my number one tip, that too. Fred Jaravata: Well, OK, guys. Thank you guys very much for joining this show. But before we leave, I want – our teachers, if they need to get in touch with you, how can they do that real quick? Nicholas Cole-Farrell: You can find me on Twitter. It’s @ncolefarrell and I would love to find you there for sure. Our maker space is at createbuild.space. Fred Jaravata: Cool. Leigh Northrup: And I’m @leighnorthrup. There’s a goofy picture of me kayaking there and I’m usually in front of mountain or doing something outside. So I’m not the nerd inside. Those are the pictures I like out there. So … Nicholas Cole-Farrell: That’s me. Leigh Northrup: But I look forward to connecting with anybody who wants to hear more about what we’re doing over in North Carolina. Fred Jaravata: Yeah. Thank you guys. I highly suggest you guys who are listening, check out what these guys are doing, what Nicholas and Leigh are doing. They’re doing amazing, amazing things. Connect with them. Let me know if you have any questions also and then we will get you guys started. All right? Nicholas Cole-Farrell: Thanks Fred. Leigh Northrup: Thanks Fred. Fred Jaravata: Thank you guys, gentlemen, for doing this. I appreciate it. All right, cool. Nicholas Cole-Farrell: Thank you. Leigh Northrup: Thank you. Fred Jaravata: All right. Next one is on me.
Photo by Kevin Christopher Burke on Flickr.comPointers and Retrievers Christy takes salvation up a notch, from John 3:16 to 17 moving from me and mine to the world. Pointers and Retrieversa sermon by Rev. J. Christy Ramseyclick the title above for a mp3 recording Preached at South Lake Tahoe Community Presbyterian Church on February 14, 2016 Based on John 3:16-17 Sermons also avaliable free on iTunes The church has left the building. Have you heard about this program? They had it down in Carson City. Have you ever heard of this? It’s a program, and I really can’t – I couldn’t find it, where it started. It might have been the guys’ seminar. I don’t know. But it’s a thing where churches cancel their Sunday service to go do Sunday service. It’s a strange thing. They give up their worship time, their worship hour. They have all the people come. And they go out, and they do service projects. One church packed thousands of ready-to-go disaster food relief packets so that they could immediately be shipped and give a family sustenance for three days. And they put it all together and packaged it all up, and that’s what they did on Sunday morning. Other one went up and cleaned up a place. Some places fixed up some houses that needed repair. Just all sorts of projects that they go out, and they cancel service to give service. They go out from their building. The church leaves a building and goes out and bes the church in the world. That is a huge sacrifice. And I’m not just talking about listening to the choir and drinking the fine coffee and desserts afterwards. Not that kind of sacrifice. There’s more of a sacrifice. It’s not just leading the preaching and the teaching and the singing and the praying. It’s the offering. There’s, like, two people here at least that were doing that math already. Wait a minute, they didn’t get an offering on Sunday? That is a big thing. Because the offering doesn’t go to the church that Sunday. The offering goes to the world. The church has left the building. It’s a hard program. Carson could only stand it for, like, two or three years, and then they, they switched it to Saturday. It’s hard. It’s hard to leave the building, to give that all up, to give up our service for service to the world. Now, I know what you’re all thinking. Like you think, every time I preach, what in the world does that title have to do with what he’s talking about? Pointers and retrievers? Valentine’s Day? I thought he was going to go with puppy love. Darn, we missed it again. Pointers and retrievers is about stores I’ve been to, churches I’ve served, and people I know. It comes down to pointers and retriever. And you know this. You just haven’t thought about it. Pointers and retrieve – have you ever gone to a store and asked for something, for, A, find someone, A; and then, B, ask for it. Where is this? And what do you get? Do you get a point? Over there? That’s where they should be? It’s where they used to be? That’s where I think it’d be? That’s where something I don’t like is, and [indiscernible] send him over to you? Huh? You get a pointer? Over there somewhere. I think it used to be there, should be there. And you know, if you get enough, you can get a game going, you know, because you get – and then you get closer because, you know, there is no distance in pointing. It’s just a directional thing. It’s not how far. You know, I tried to get a thing, what if we did the fingers thing? That was a little further, that was way far. It’s not really going anywhere. If you could help, I got a Kickstarter project. We might be getting that going. All right. But you get over there, and you get near the place in the same direction, and you get the next sales person, they give you another point; you know? And then you go that way, you get another point. You know, it’s like you’re a pinball, you know, trying to hit the target, boom, boom, all over the place. Oh, pointing. Then there are some stores, some stores, they don’t have any pointers. They got retrievers. “Oh, I’ll go get you that. I’ll get you that. Wait right here.” I don’t like that so much because I am a little nervous. They’re not coming back, you know. Maybe I don’t think well enough of myself, but I’m thinking I’ll never see them again. I really like the retrievers that say, “Come on. It’s over here. Come on. I’ll take you. Come on. Let’s go.” And they go, and they look for it with you. [Indiscernible], it was here. Where is that thing? You know, and they find it. It’s not where it used to be, or not where it should be, or not where it was last week or any of that stuff. It’s, “We’ll find it together. Come on. Let’s go. Let’s go get that. We’ll get it together. We’ll figure this out ourselves. We’ll find it. I don’t know where it is, but I will find out. We will find someone somewhere to get it.” Retrievers. There’s people like that, too; isn’t there? Find people? You go and ask for help, and they say, “No, you can get help over there.” “Oh, these people over there might help you.” “Oh, there’s that book over there. That book there might help you there. And while you’re there, you can do that here, and you should live your life there and get that job there, move there.” Lot of pointers. If you’ve got a couple retrievers in your life, keep them close. “I don’t know, let’s go.” “I’m bringing my truck. You’re moving, I’m bringing my truck. When you want me there?” Not “There’s some moving companies over there, they’re really good.” Pointers and retrievers. Churches are like that, too. Oooh, he’s gone from preaching to meddling. There he goes again. Why can’t we have some puppy love jokes? That was fun. You can go over there for salvation. Do this, do that, find Jesus. If you get this here, come to this service now, we open up our doors here, come here, do this, do that, do the Bible, do the confirmation, do this, do that. You can do that. Then there’s retrievers. I’ll come and get you. I’ll come and be with you. This is from the deacons. We know you’re having a hard time. Retrievers. And now is the place – I like to give, you know, subtitles for people, you know, know what’s going on next is now we get to the scripture. Because some of you say, “Does he ever get to the scripture? There’s scripture.” John – and I’m just doing two verse – there’s a lot of verses here about a lot of stuff. There’s a whole born again anew from above thing. That’s a whole sermon. And if you get it, if [B&C] doesn’t get the thing done, you might hear that one. But tonight, today, you’re just hearing about 16 and 17, just 16 and 17. That’s all. Now, the 16 verse, that’s a pointer verse. I think it doesn’t have to be, but it too often is. How do I get eternal life? Well, you go to Jesus. You go to Jesus to do that. That’s how you do that. For God so loved the world that he gave – and it said he gave his only son so they may not perish but have eternal life. You know that eternal life starts right now. That’s present. It’s not after death. It’s not a death insurance thing. It doesn’t start after we die. The Greek says it’s now. Get eternal life right now. And too often we stop at John 3:16. Too often we stop there. We don’t go to the next verse. We say, oh, great, me and mine, we’re saved. Yeah, we know the way to Jesus and to Heaven. We’re going that way, yeah. Then there’s that pest – there’s more than one verse in the Bible. That’s bad news to some people. And then John 3:16 goes to 17 and messes everything up. We had it gone down, we got ourselves saved, me and mine, we’re with Jesus, we’re eternal life, yay, rah. And then you get the 17th verse, like Jesus, you just couldn’t quit there. You had to go on. And he talks about “For God sent.” What? Wait a minute. Last verse was “gave.” What’s this “sent” stuff? Oh, no. What are we getting into now? The son into the world. Wait a minute. The world? If you look at John, the world’s not a fun place. The world is a bunch of people that are nasty, that are hostile, that are chaos, that are after Jesus, that don’t believe. And that’s the world. Not the good folks here at South Lake Tahoe. Gosh, this is a good church. I have never in 35 years of pastoring heard so many Bible pages turning during a scripture reading. I congrat- proud of yourself. That’s amazing. They’re actually reading the Bible. I was actually – I had chills. I went up there and go, “Whoo, what’s that?” Salute. But it’s the world. The people don’t read their Bible. And people don’t have, well, they may have a Bible, but they never open it. People that are hostile to religion, or even worse than hostile, indifferent, don’t care, don’t think it matters. That’s who God sent Jesus in. Whoa, [indiscernible]. Not to condemn the world? Well, that’s no fun. We’re not to condemn the world? That’s like our number one favorite thing to do. [Indiscernible], we’re going to cut down the debates to, like, 20 minutes, if we can’t condemn the world. Not to condemn the world, but the world through him be saved. Wait a minute. We’re saving the whole world. Oh, ho, ho, I thought it was just me and mine. But you’re telling me that it’s the world, the one you’ve been telling me is so awful and hostile and chaotic and against Jesus, all those outside things. It’s cosmo. It’s cosmopolitan, the cosmos. The whole mess. The whole mess of things will be saved through Him. I should have just stopped, like the football players fan says, just that one verse. You go to 17, you’ve got to go save the world. Wow. What does that look like, that world-saving stuff? How are we different then? One thing’s different is evangelism. Oh, he’s saying the “E” word. This is a really upsetting sermon. Evangelism. When, you know, you know, it’s too often the question is how are we going to get young people to church? How are we going to get the young people to church? If that is your question, your answer is doomed. Doom’s a little strong. I’ll back up. Very difficult, not doomed. Maybe just [doo]. Because you’re starting all wrong. You’re trying to save the church. You’re trying to get the church, the world to save the church. No, the church saves the world. You’ve got it backwards. It’s not going to work right. And I tell you, I know, I’ve raised some of the young people. Got to live with them, raise them right up. And they don’t need saving. Just ask them. They’ll tell you. They’ve been told by their parents, they’ve been told by their school, they’ve been told most by mass media that they are the greatest thing ever, and they deserve the best. And they don’t need saving. So we come peddling salvation to them, well, huh, we don’t need any of that. But that’s John 3:16. What if we peddled John 3:17? Because they, God bless them, and I’m serious, they have a burden, they have a desire to save the world. They want to fix the world. They want to save the world. And if we figure out that’s what we’re about, they’ll join up with us. Or more likely we could join up with them. That is something people want to be involved in, not, hey, we’re here to have a great church. They don’t care. They’re not into save the church. They didn’t go through World War II where the institutions saved the world and the freedom and got the Nazis and all that. And we loved the institutions back then. Back before I was born and after, why, that was the great Fifties. That was super institutions save the world. We all worked together. We made these great things. We built up a spiritual industrial complex in the Presbyterian church in the mainline denominations because we were going to rid the world of evil, and that’s just like the Nazis. Yeah, it’s a different world now, sorry. Don’t trust the institutions. The young people don’t trust the latest app unless they built it themselves. And next week’s app is something different. But they still have the good and clean and passionate desire to make a better world. And if we tell them we’re about that, and if we are about that, if the church leaves the building and does service to the world instead of service for themselves, there’ll be plenty of people. All kinds. All messed up. The Serenity Prayer has a longer version than just the three sentences that we normally associate it and see on plaques. Niebuhr, when I wrote it, wrote several versions. One was a long one. One of the ones that I’ve been working with that’s been helping me with my issues, which you can ask me about later, but it’s taking, as Jesus did, this world as it is, not as I would have it. Taking as Jesus did the world as it is, not as I would have it. I do a lot of “as I would have it” stuff. But after looking at John 17, I’m thinking that if Niebuhr was looking at that verse, maybe he would have written yet another version and changed one word and said “loving,” as Jesus did, this world as it is, not as I would have it. That’s tough to do. Loving as Jesus did the world as it is, not as I would have it. Jesus died for that world, the world he was in: brutish, slavery, militaristic, awfulness, betrayers. That’s the world he died for, not the world he was calling us to. That’s the world he loved. Salvation – and sometimes I do little bumper stickers for people that like to remember one thing for, like, when people ask them, and they weren’t really listening. So this is the time to listen for that, you know, a tweet, if you’d do a tweet. But it’s “Salvation is like potato chips. You can’t stop with one.” John 3:16 may think that John 17 says “For God so loved me.” But he didn’t condemn me, but saved me. No, it’s the world. You can’t stop with one. There’s a church in Arlington, Virginia, First Presbyterian Church of Arlington, Virginia. They’ve been having some troubles lately. They’ve been there about a hundred years, though. But this year is going to be their last Easter. By their choice. Got out among the congregation, the community, and talked to them, talked to the cops and the teachers and the service workers and the people that make the town go, and listened to them, and felt their pain that they could not afford to live in the community they worked. They had to go way out somewhere because there was no affordable housing. And that, oh, yeah, there was some affordable housing. One year they had 122 affordable housing units, 122; 3,600 people applied for those. Hundred twenty-two; 3,600 people wanted them. This church, beautiful church, big land, wonderful location, said we’re going to sell our property, tear down our church, and build moderate income housing. Reserve them for seniors, people that grew up here and lived here and can no longer afford to stay, and other people that need it. They sold their property to a nonprofit that’s been doing housing developments around that at a 20 percent discount. Woohoo, Presbyterian. Gave them all up, and now they’re giving away the parts of the church, the pews and the Bibles to other churches, the homeless shelters, furnishings, getting ready to close up about May or June. And in their place will be a place that serves the world, the poor, the struggling, the working every day, everyday stiffs. The church has left the building. Amen. Transcipt differs from the recording with some exclaimations removed and some patter while I checked my notes edited out. Transcription done by edigitaltranscription.com Recommend for fast, accurate, and patient transcriptions. Christy Ramsey. Some rights reserved. This work is licensed under aCreative Commons Attribution-NonCommercial-ShareAlike 3.0 Unported License.
Teaching Bites 2.0 - We help teachers create a more fulfilling lifestyle.
Corinne Corrigan is a fourth grade teacher who has a unique experience where she started in the classroom and moved to the computer lab, started her family, came back and established our maker space studio and is now back in the classroom–in a new grade. Whew! She has a wealth of teaching resources and tips for eveyone. I learned everything about teaching from Corinne (and Zoe Ley) when I was her teaching assistant way back. She continues to be a mentor and friend who has always given great advice and tips professionally and personally ;). Come listen as we chat about her experience and get valuable tips to use in your own teaching and find out what she means by telling teachers to “just don’t do it!” Books Mentioned (Affiliate Links – at no extra cost to you!) Great Horn Spoon One Crazy Summer Music by: JukeDeck Here is the transcript for you: [Welcome to the Teaching Bites Podcast. Here are your hosts, Fred and Sharon Jaravata.] Fred Jaravata: This is the Teaching Bites Show where we connect you with people and ideas to take your teaching to the next level. I’m your host. I’m Fred Jaravata and today we have a special guest. This person here is a very good friend of mine and a special person where she was actually my boss. Well, Corinne was my master teacher in first grade for about two years and then after that, I followed her into the computer lab and we worked together there for the next few years. She took some time off, came back and worked in the Makerspace. She helped us set that up and she went back to the classroom and teaches fourth grade. Hi Corinne. Corinne Corrigan: Hello. Fred Jaravata: How are you doing? Corinne Corrigan: Good. How are you? I didn’t know I was so special. Fred Jaravata: Very special. OK, one of the few people in this universe that actually – is actually really cool. Corinne Corrigan: Oh, wow. Thank you. Fred Jaravata: OK. Corinne Corrigan: I’m honored. Fred Jaravata: OK. So Corinne, fill in any of those blanks – any blanks that I – the intro I shared with our listeners and let us know your teaching story. Corinne Corrigan: OK. So my background, I taught for second, third and now fourth grades. I also had a stint as a pre-kindergarten teacher for a semester and I was a technology specialist for several years. I got into that when I wanted to do something different and I wanted to have a job that would also allow me to possibly work part-time when I was having children and it worked out. But then I missed the classroom. I’m happy to be back teaching fourth grade humanities. Fred Jaravata: Fourth grade humanities, OK. So when did you start teaching? Corinne Corrigan: I started teaching in 1994. It was when I started my credential program. I actually did a credential program overseas in England. I was – I had been living in England and wanted to stay there and had a boyfriend there that I wanted to stay and hang out with. So I did my teaching credential and teaching education in England for – before I moved back to the States and then now I have a California credential. Fred Jaravata: Now, why did you choose San Francisco? Corinne Corrigan: I went to college. I went to the University of San Francisco and I wanted to come back. So I did a year in Atlanta where my parents lived. I moved back from England and had about $50 in my pocket and decided I needed to live at home for a while and I taught third grade for a semester and pre-kindergarten first semester and then I moved back to San Francisco. Fred Jaravata: OK. Corinne Corrigan: I lived here longer than anywhere else. Fred Jaravata: Than anywhere else. And you like it so far? Corinne Corrigan: Uh-huh. Fred Jaravata: Yeah. I did two and here. How did you get into teaching? Corinne Corrigan: Well, let’s see. I started college in 1989 and didn’t really know what I wanted to study. I knew I loved working with children. I bounced from one major to another. I finally ended up with a degree in psychology and religion and part of my practicum at the end of my degree was working in a school with the first grade classroom and being in that classroom, I loved it and decided that that’s where I wanted to be. Fred Jaravata: OK, hold on. I have some sound issues I need to fix real quick. OK. Corinne Corrigan: So I was working in a first grade classroom in San Francisco and decided that that’s what I wanted to do. By then, I was already a senior in college. So I decided the best route would be to graduate with my degree as it was and then go back to school and study education and get my credential. Fred Jaravata: And again, you got your credential in San Francisco, in the University of San Francisco? Corinne Corrigan: No, I did it in England. Fred Jaravata: Oh, in England. That’s right. OK. Corinne Corrigan: Yeah. And then I came back. I eventually got my master’s degree at USF as well. Fred Jaravata: Oh, OK. All right. Now share with us the “aha” moment, that time when you realized teaching is for you. Corinne Corrigan: Well, it was during my senior year in college and I was volunteering as part of my practicum for my psychology degree working at a school, working with individual students who – I was used in the classroom kind of – in the beginning, just to be there to observe and help and eventually I was given small groups and worked with children who really needed that extra support. The teacher was great. She let me try out lessons with the whole class and with groups and just being in that classroom, I don’t think there was really one moment. I think it was that whole experience that really made me realized that that’s what I wanted to do. I wanted to work in schools. I wanted to work with kids. Fred Jaravata: How old were you? Corinne Corrigan: I was a senior in college. So I was 22. Fred Jaravata: So what did you want to do before that? Corinne Corrigan: I had no idea. Fred Jaravata: You had no idea. Corinne Corrigan: Nope. I knew I love children. I wanted to work somehow. I thought maybe by going into the field of psychology. That was my degree. But in the end, I really – I wanted to be teaching children and working with them in the classrooms. Fred Jaravata: OK. All right. Corinne Corrigan: I was directionless before that. Fred Jaravata: You were directionless and then you found teaching. That’s good, yeah. A lot of people – a lot of teachers I have noticed that when I interview them, they kind of fell into the teaching world too and they realized that they love teaching. Corinne Corrigan: Well, I didn’t love it at first. I mean I wanted to be a teacher and then I became a teacher. It’s hard. The first few years were really a struggle. Just a lot … Fred Jaravata: What were the toughest parts? Corinne Corrigan: I think the amount of work, not having enough time to get everything done, knowing – you know, really what I wanted it to be, what I wanted my classroom to be and not being able to get there just because of the sheer size of my class or the lack of time. Dealing with parents was difficult because I was young and they were all older than I was. It’s hard the first few years really. I think that – I thought about trying to find a different career at one point. Now I love it. Now I just really enjoy it. Fred Jaravata: So what helped you get through over that hump of actually sticking with it and facing all those challenges? Corinne Corrigan: Not knowing what else to do partly. No other choice. Fred Jaravata: I mean you were young. Corinne Corrigan: I was young, no choice really. Like, OK, got to stick with this. I have a job and you need to pay the bills. Quite honestly, after doing it for two or three years, it definitely – it gets easier being able – especially when I was teaching one – the first couple of years, I moved around classes. So it was always like starting over. Fred Jaravata: Right. Corinne Corrigan: But once I was able to stick with one grade level for a few years and build some confidence and that experience I think helped me get through that. Then I took some time off after my children were born and honestly having my own kids also I think and getting older makes things a little bit easier. Fred Jaravata: You’re much older now. Corinne Corrigan: Much older. I know, Fred. You’re six months younger than I am I think. Fred Jaravata: I’m only 27. So … Corinne Corrigan: Ha-ha! Fred Jaravata: You’re 28. Corinne Corrigan: Twenty-seven plus what? Fred Jaravata: Stop it. Stop it. A couple more decades of that. Corinne Corrigan: Yeah. Fred Jaravata: OK. So you mentioned that you – you know, you have your children. OK. So how does that affect you now in your own philosophy of teaching? You’re a parent. You have two kids. How does that affect you with how you teach but also in talking or engaging with your children’s teachers? Corinne Corrigan: Right. Well, I look back to when I was a younger teacher and didn’t have my own children and I used to get really frustrated with the parents. Like I send things home and no one would reply. Things would sit in the children’s backpacks for weeks. And like, what are these people doing? How can they not look in their kids’ backpacks? Just little things like that. Now I am that parent. So I definitely commiserate with the parents a bit maybe. I understand them more. I have more empathy. So – and with family life and what these kids – what happens when they leave school and how busy they are and what life is like after school hours. I have a better understanding of these families and I think that has helped me quite a bit. Is that what you asked me? Fred Jaravata: Yeah. Corinne Corrigan: OK. Fred Jaravata: You definitely understand now why parents aren’t getting back to you sooner, right? Corinne Corrigan: Yeah. And just what – as far as even things like homework and what is appropriate for kids to work on as – with homework and how busy kids are outside of school. All of that, I have a better understanding of and how busy parents are and how hard it is to be a parent and juggle everything. Fred Jaravata: And with that, so when you interact with your children’s teachers, you … Corinne Corrigan: I’m usually apologizing because I’m the one that forgot to send in the form because I know what it’s like being on the other side not getting that form. Fred Jaravata: Right. You understand that and hopefully they understand that too. Corinne Corrigan: I showed up to a parent-teacher conference a week early once. Yeah. That’s me. Fred Jaravata: That’s you. Corinne Corrigan: That’s me. Fred Jaravata: Wow, OK. Corinne Corrigan: And she was so nice. She even did the conference right there. Fred Jaravata: Oh, she did? Corinne Corrigan: She did. Fred Jaravata: That’s nice. Corinne Corrigan: She didn’t have to, but she did. I felt so bad. Fred Jaravata: Wow. You caught her off-guard – well, she was probably ready. Corinne Corrigan: Well, she’s a great teacher. She knew I wasn’t, you know, going to hold anything against her for not being totally prepared since I was a week early. Fred Jaravata: OK. Better than a week late. That would be irritating. Corinne Corrigan: I have not shown up too. That has happened. Fred Jaravata: OK. Quote or a mantra. What is your – if you have one. Do you have a quote or mantra or a saying or whatever it can be that helps you with your teaching? What would it be? What is it? I need a drink. That’s a quote. Corinne Corrigan: That’s … Fred Jaravata: I can’t wait until it’s over. I can’t wait until June. Corinne Corrigan: June, July and August are the best months of the year. Now, there are a couple of things. One I would say is – when I was a senior in college working at that school in San Francisco, when I decided to become a teacher, the teacher there, she said something that has kind of stuck with me. She said – she was like, “You know, they learn in spite of us.” So I tried to remember that, that I can’t do everything, that I can’t get everything done. I can’t have a perfect running classroom the way that it’s all shiny and happy and perfect and trying to create that kind of classroom is impossible and just creates too much stress. So I just do my best and I say to myself, “Well, they learn in spite of me.” Fred Jaravata: They learn in spite of you. Corinne Corrigan: In spite of me. And also the other thing I try to remind myself is to have fun. I spend more time here at school than I do … Fred Jaravata: Anywhere. Corinne Corrigan: Anywhere else and it better be fun or it’s – it can be miserable if you let it. Fred Jaravata: You’re going to go crazy. Corinne Corrigan: You will. You will go crazy and you can be totally stressed out and miserable or you can decide, “I’m going to have fun. I’m going to enjoy myself and not worry if I don’t get everything done.” Fred Jaravata: That’s a good one. That’s good one. They are learning in spite of you, right? In spite of all of us. Corinne Corrigan: I hope so. Fred Jaravata: OK. What I ask a lot of our guests also and a lot of the listeners like to hear the answers to this or the tips and ideas, can you name or can you share a moment in time of a challenging moment that you had with a student or with a parent and how you overcame that? Corinne Corrigan: Are parents going to listen to this? Fred Jaravata: Parents are probably not. But they may. Corinne Corrigan: I won’t name names. I won’t name names and it was a long time ago. Fred Jaravata: OK. Corinne Corrigan: But if this person does hear it, she might know who I’m talking about. So this was several years ago and I had a child in my class who like to go home and tell stories that weren’t always true because they would experience something that a six-year-old – or he would experience that a six-year-old would experience and whatever that experience was would then go through his six-year-old filter in his brain. Fred Jaravata: This is first grade? Corinne Corrigan: Yes. Fred Jaravata: Was I in this class? Corinne Corrigan: No. Fred Jaravata: OK. Corinne Corrigan: That narrows it down, doesn’t it? Fred Jaravata: Yeah it does narrow it down. Corinne Corrigan: And so things would go through this six-year-old brain. It filtered through and come out as not really what happened, right? I don’t think he was outwardly like trying to fib. But his version of events wasn’t quite accurate. So he went home and I honestly can’t even remember what he told his mother I said. It was something that was criticizing her, that I had criticized her to him, which I wouldn’t do. Fred Jaravata: Right. Corinne Corrigan: Right? Who would do that? So this was a time before email really. I mean there was email but it wasn’t used as much as it is now. Fred Jaravata: As communication with parents. Corinne Corrigan: Right. So I would get voicemail messages. So I had a voicemail from this parent within half an hour after dismissal, which was a usual thing with her, but this especially. So I talked to her and I tried to reassure her that I would never criticize her in front of her child and she basically accused me of lying. Yeah. So it was hard. This was about a week before parent conferences. Fred Jaravata: Ouch. How did she approach you? Corinne Corrigan: She phoned and left a message for me to call her. Fred Jaravata: Oh, OK. Corinne Corrigan: So I called her back. Fred Jaravata: OK. Corinne Corrigan: And was accused of lying when I denied that I said what he had said and I don’t remember what it was exactly. So that parent conference a week later was not so much fun and I just decided to – and I’ve done this a couple of times where I just – I’m very direct with the parents and just take it head on and I just said, “You know, I’m really having a hard time getting past our phone conversation where you basically accused me of lying.” So then it didn’t work out too well. The conversation went downhill from there. I wasn’t super delicate with her. Fred Jaravata: But she insulted you. Corinne Corrigan: She did and I wanted to clear the air and I wanted her to understand that I wouldn’t have done that. I wouldn’t have criticized her in front of her son. Fred Jaravata: Right. Corinne Corrigan: It worked out in the end. She kind of blew up and left and the next day wrote me an apology letter. So it – and from that point forward, we got along very well. So it’s – sometimes being direct with the parents helps and works really well and other times, you have to finesse it a little bit depending on the personality of that parent. Fred Jaravata: Interesting. OK. Corinne Corrigan: Yeah, that sticks out as probably the biggest event with a parent that I’ve had. Fred Jaravata: That’s probably common also with teachers and parents, the whole dynamics. That probably is pretty common. But I’m glad it worked out. Good. Corinne Corrigan: I ran into her probably a year ago. We had a nice conversation and yeah, I think she has obviously moved past that her son is now … Fred Jaravata: Do I know this parent? Corinne Corrigan: I’m not naming names. Fred Jaravata: OK, no names. Corinne Corrigan: You may have heard of her. I don’t know. Fred Jaravata: OK. Corinne Corrigan: No, she’s a lovely lady and she was … Fred Jaravata: You worked it out. Corinne Corrigan: She was looking out for her child and herself. Fred Jaravata: Exactly. Corinne Corrigan: I understand that. Fred Jaravata: You would do the same thing. Corinne Corrigan: Uh-huh. Fred Jaravata: OK. OK. So I know earlier, before we stepped into the sound room here, you didn’t have a book or a song or even a movie that kind of inspires you. You even questioned. Like, what is this question about? But is there anything that inspires you, something in pop culture? Let me put it that way. Something in pop culture. Corinne Corrigan: Pop culture? Like Kardashians or something? No. Fred Jaravata: What was the other one that you kept on talking about before, you and Krista? It was the Honey Boo Boo thing? Corinne Corrigan: Oh, Honey Boo Boo. Yeah, no. Fred Jaravata: That’s a big one. Corinne Corrigan: Not so much. Fred Jaravata: It doesn’t inspire you? Corinne Corrigan: It inspires me to do other things. It’s a hard one. Honestly like the books I read, I find myself reading a lot of children’s literature since – this is only my second year teaching fourth grade. So I feel like I’m constantly trying to read things that they’re reading. Fred Jaravata: Can you name some books at least in your fourth grade? Corinne Corrigan: Books in my fourth grade. So … [0:17:22] [Crosstalk] Corinne Corrigan: Some of them read that, yeah. I read those a long time ago. But I was reading the summers. I really enjoyed reading. It was called One Crazy Summer. It’s about in the 60s in Oakland and these children that move out to the Bay Area to be with their mother for the summer who is involved with the Black Panthers. So it’s an interesting read. I read a lot of books that revolve around the gold rush, California gold rush. So there’s the By The Great Horn Spoon that my students read. I’m always looking for new things about California history or that tie into California history so that I can integrate the subjects. I find that’s the best way to get through the most amount of curriculum is to try to integrate the reading and the writing and the social studies. Fred Jaravata: OK. So you have a very unique experience. You started in the classroom. Then you went to the computer lab and then you took some time off to be with your family. Then you came back into the computer lab, which we transformed into the Spark Studio. Now you’re back in the classroom. Corinne Corrigan: Right. Fred Jaravata: This is a question. How – from what you know now, from all the experience that you did that, is there a tip or trick or – how do you integrate technology in the classroom now being … Corinne Corrigan: Not as much as I would like. It’s interesting. Fred Jaravata: Right, because you were one of [0:19:01] [Indiscernible] and you went through that. One of our jobs is to help teachers start using technology and innovate, right? Corinne Corrigan: Uh-huh. Fred Jaravata: From your point of view now, as a classroom teacher, what’s your experience with that? Corinne Corrigan: Well, you think I would go in and be using technology left and right just from my background. But being new to a grade level and really trying to learn all that curriculum and learn where the students are at this age and piece it all together has been a huge overwhelming task and I do use technology. We have – the children all have one-to-one iPads that they use. I would like to use it more. I find myself sometimes forgetting to use the technology in that. I will be like, oh, I could have done that. Why didn’t we use the iPads for that? It’s not coming to me because I’m too busy trying to get everything else together at this point. So one of my goals actually is to – this year and especially next school year, my third year in fourth grade, is to really use it more and use it how I really want to use it. But it kind of goes back to what I said earlier about having this perfect classroom that has everything like the way it should be. Like, in my mind, I know what it should be. I just can’t get there right now. Fred Jaravata: Right. The reality gets in the way. Corinne Corrigan: Reality gets in the way, definitely. Fred Jaravata: OK. Corinne Corrigan: So I do use it. I do use technology. The students – I try to let them have as much choice as they – as I can. Technology is always one of those choices. So some children have ideas of ways to use it and I usually let them go with it. Fred Jaravata: Can you share at least one way that kids are using it? Corinne Corrigan: Well, we are … Fred Jaravata: The iPads. Corinne Corrigan: The iPads. Yeah. So sometimes what I will have them do at the end of reading a novel is have them do some kind of report using the iPads and I leave it kind of open. So they can make a movie about it. They can do either an iMovie or an iMovie trailer. They can use the audio. Oh gosh, what is that app called? Is it Audio where they do like a little slideshow and their voice in – I can’t remember what it’s called. I think it’s called Audio, isn’t it? Anyway, they can do that. There are lots of choices. They can make a little book about it using Book Creator. Fred Jaravata: So you’re giving this as an option for them to do it. Corinne Corrigan: Yes, or they can make a poster or they can not use the iPad. Fred Jaravata: So that’s a key thing, what you did. You’re giving them the choice to do that and I think that’s one of the things that I think some teachers have – are struggling with technology, using the iPads or Chromebooks or whatever, is that they would have to know everything of using the technology. Of course you’re unique where you have that background. You know how to use iPads and so on. But what’s one tip you can share with the teachers struggling to use technology? Corinne Corrigan: Right. I think what’s important is to decide, “Well, why do you want them to do this project? What is it you want them to show?” You want them to show their learning and what they know. So that can be done in a variety of ways. You have to just be open to letting them show their learning in different ways. So I don’t like to get 22 – or in this case I have 42 students. I don’t like to get 42 projects that are all the same. That’s boring. Fred Jaravata: Right. Corinne Corrigan: So I like leaving it up to them. They can still show their learning in multiple different ways and it could all be different. But they’re still showing me their learning. I think you just have to kind of let go and be able to do that. I don’t know if that’s a really good piece of advice or a tip but that’s – you have to get to that point where you – and you can still give them parameters. If making a movie is one of the options, well then, give them parameters within that, that your movie has to have X, Y and Z in it. That way, you still have some control over it. Fred Jaravata: What’s your favorite tech tool? Corinne Corrigan: My favorite tech tool. Fred Jaravata: Tech tool, resources, websites that you actually like using. Corinne Corrigan: You’re going to laugh. Fred Jaravata: I’m already laughing. What is it? Corinne Corrigan: Yeah, I like my phone. My new watch. Fred Jaravata: An Apple watch. Corinne Corrigan: An Apple watch. No, I really actually like Pinterest. Very simple. There’s so much on there. I can always – if I’m stuck for an idea, and I do a search, nine times out of ten, it’s on Pinterest. Fred Jaravata: Right. It’s true. Corinne Corrigan: And I know it’s – I knew you were going to laugh at me. But it’s true. I can always get different ideas or I get an idea and I tweak it and make it my own and take it off from there. Fred Jaravata: Sharon, she loves that. Last year she … Corinne Corrigan: There’s everything on there. Fred Jaravata: There’s everything on there, right? I mean you just type in like kitchen stuff or whatever. Corinne Corrigan: I don’t have time to make my own Pinterest page. Who has time for that? But other teachers … Fred Jaravata: You’re pinning stuff or you’re subscribing to boards or whatever. I don’t know how it works. Corinne Corrigan: Yeah. Fred Jaravata: But yeah, Sharon loves it. I don’t. I don’t like Pinterest and maybe just the layout, how it works out, and it’s not really geared for my style of consuming things. Yeah, I just know there’s a lot of – I’m going to say it. Women love Pinterest and men, I don’t – very rare do I find … Corinne Corrigan: The only thing I look on there, for teaching things and gardening. That’s it. I get ideas and all I do is look at the pictures and if it’s something interesting, then I click on it and try to find it. The other site that actually is often on there is Teachers Pay Teacher. Fred Jaravata: That’s a big one. Corinne Corrigan: I like that site too because that way I don’t have to recreate something that’s already out there. Fred Jaravata: And people making money with that too. Corinne Corrigan: I know and I thought about putting things on there. But again, I don’t have time. Fred Jaravata: You don’t have time. Corinne Corrigan: I don’t have time to make my own stuff to sell. Fred Jaravata: Exactly. But if you make something and then it’s a hit, you will have more time to do the things you want. Corinne Corrigan: Yeah. Maybe at some point I will give it a try. Fred Jaravata: OK. So what’s something happening now that you’re excited to learn about more or about? Corinne Corrigan: Something I want to learn about. One of my regrets is not learning another language and I took a lot of Spanish in high school and college. I really don’t remember much because it was all just written and reading. Not a lot of conversational Spanish and I didn’t really use it. So I really want to learn. I want to go back and study Spanish and really learn it. I would love to find a way because my students take a semester of Spanish. It would be really great to find a way to do more of an immersion style, like parts of the day in Spanish, even if it’s just like the morning meeting or trying to incorporate that into the classroom to help them with learning Spanish as well. So I have this idea kind of rolling around in my head and I need to find a way to go and do it and do like an immersion myself and learn Spanish. So that’s kind of one of my future goals is to get on that and learn a language. Fred Jaravata: That’s cool. That’s a very useful thing. Corinne Corrigan: It also ties in because I teach about Spanish colonialism in the 1500s and all of that kind of ties together. So it would be kind of cool to bring it into the history that I teach as well. Fred Jaravata: OK. What project have you done in the classroom that you’re most proud of? Corinne Corrigan: Oh, gosh. I don’t know. Fred Jaravata: I’m guessing it’s not the Spanish. Corinne Corrigan: I didn’t look at that question. I didn’t see that one. I didn’t think about that. Project that I’m really proud of in the classroom. Oh, I know. So I did this thing last year. I called it the California Showcase and this year I changed the name to California Bonanza. I think it sounds better. So basically it’s kind of a culmination of all of the history that my students learn. They take that. I divide them up into groups and they research a topic or a period of history, so that they’ve already learned about it but they dig in deeper. As a group, they write a play. So we do a little bit of playwriting with it and they perform the plays for the parents at the end of April. So we start with the early Californians, the Native Americans, so there’s a skip with that. Then we move into the explorers and Spanish California, Mexican California, the gold rush and statehood. So they take and create plays about each of those periods of history or periods within California history and then perform them. They write the plays themselves. They make the props. They create all of it. It’s a huge project. They have – they bring in things for costumes. We will even do some sewing if we need to. It’s really child-centered, child-made, the whole thing with the teachers kind of – we’re the guides to make sure that they stay on track. Fred Jaravata: So when will you start this project? You said they present it in April? Corinne Corrigan: Yeah. So this is only my second year doing it and we’re starting it now. I wanted to start it earlier but it just didn’t happen. This year, I’m incorporating it into our writing, our informational writing unit. So they are – I’ve divided them into groups. They’re getting their topics. They then individually have to choose a topic within that period of history to work on during the informational writing unit that we’re doing. So that way, they’re getting all their research done and they really feel that they understand that period of California history, so that when – in about a month, they sit down to write the play as a group. They will have a lot more research and information in their heads and in their work that they can share to write a play. Then we practice and practice and rewrite and rewrite and revise, revise, revise. It’s a lot of work. But the kids love it and they perform it and the favorite topic last year was the Donner party of course. Fred Jaravata: The Donner party. Corinne Corrigan: Oh, yeah. I tried to just keep it about pioneers and people coming out to settle in California. Fred Jaravata: So they’re reenacting the whole … Corinne Corrigan: They decided to … Fred Jaravata: The beef jerky. Corinne Corrigan: There was no beef jerky, Fred. We kept it tasteful. Fred Jaravata: Using it as a prop? No? Corinne Corrigan: We kept it tasteful. They – so they wrote – the one group that did about the pioneers, wrote their skit about the pioneers definitely talked about the Donner party in there. So it was pretty funny. We kept it – it was appropriate. Fred Jaravata: OK. Corinne Corrigan: That’s where we step in and make sure the teachers step in at that point. Fred Jaravata: OK. So how do you inspire your students? Corinne Corrigan: How do I inspire them? I don’t know. I try to use humor as much as possible. They’re here just like we are, more than they are at home, and I think it’s important that they feel safe and happy at school because they can’t learn if they don’t feel safe and happy. So I try to tell stories. I think teaching history is – can be dry. So I try to create stories out of it as much as possible. Fred Jaravata: One thing that I learned also is to get to know your students, right? And I know you’re doing that. How about the other way around? Do you share what’s going on with you with your students? Corinne Corrigan: I do. I think it’s important that they feel a connection with the teacher and in order to feel a connection, you have to really know a person and I definitely – I share little tidbits. They know about my family. I have children their age and I talk about them and they love that. They love hearing any little tidbit I can throw out there that’s about me. Fred Jaravata: Right. And hang on to that. Corinne Corrigan: So yesterday, I actually blow-dried my hair and used a flat iron and it was the first thing they noticed this morning. Mrs. Corrigan! Your hair looks gorgeous. Any little difference, they notice. Fred Jaravata: Well, that’s a good one. I mean otherwise … Corinne Corrigan: It is good. Fred Jaravata: The other way around, sometimes they will just criticize you. Corinne Corrigan: Well, they will. Yeah. Fred Jaravata: Your hair is ugly today. Corinne Corrigan: Well, they’re not quite like that. The girls are more subtle. They look and they will say things like, “Wow, you must really like those shoes.” Like why? Because I wear them a lot? Yeah, you do. You wear them a lot. Fred Jaravata: So wait a minute. You kids are in dress uniforms. You guys are always wearing the same thing. Corinne Corrigan: I know, I know. Fred Jaravata: OK. So we have a couple more minutes left in this interview. Corinne Corrigan: OK. I’m scared. What else are you going to ask me? Fred Jaravata: Time-saving tip. Corinne Corrigan: Time-saving tip. Fred Jaravata: To … Corinne Corrigan: Don’t do it. That’s the time-saving tip. Just don’t do it. No. I don’t know. Fred Jaravata: That’s a good one. Why do you say that? Corinne Corrigan: Well, sometimes you have to decide what’s important and if you – I could be here until six o’clock every day and still not get everything done. So I have to decide what’s important right now and get that finished. Some things don’t really have to be done. I have to decide. Do I really need to do this? Does this have to be done? Maybe in a perfect world, I want it to be finished. But sometimes I’m like, no, I don’t have time. It’s not needed and I need to focus on other stuff. Fred Jaravata: You are prioritizing things. Corinne Corrigan: Yes. Fred Jaravata: Right. What needs to be done. Corinne Corrigan: Yeah. I think early on I tried to do everything and wanted everything to be perfect and I would be at school so late every day and neglecting my family and I try not to do that anymore. I try to get out of here and pick up my kids and enjoy time with my family. Fred Jaravata: Good. That’s very good advice. Speaking of tip, advice, would that be the best advice you would have for teachers or is there another tip or advice you want to share with teachers? Corinne Corrigan: I mean I think going back to what I was saying before about you – there’s not enough time in the day and you ask teachers often. Like, what is it you really want? And they often say more time, more time. Well, it’s not going to make any difference. You’re still not going to have that perfect bright and shiny little classroom that has everything you want done and it’s impossible. So it’s hard as a teacher because you know what it should look like and you just can’t – reality sets in. Fred Jaravata: Because you’re looking at their Pinterest. That’s why. Corinne Corrigan: Yes, because I’m looking at Pinterest. Fred Jaravata: Why? Looking at the perfection. Corinne Corrigan: May be true. Fred Jaravata: You don’t see the work behind all that stuff. Corinne Corrigan: Yeah. Yeah. I think prioritizing, choosing what to do and what not to do, being OK with it not getting done. I think you have to get to the point where you’re OK with that. Like, oh well, I didn’t get it done. It doesn’t look like what I wanted it to look. Oh well, move on. Fred Jaravata: Oh well, move on. Corinne Corrigan: You know? And try to use humor and have fun. Fred Jaravata: Very cool, very cool. All right. Corinne Corrigan: Anything else. Fred Jaravata: I think that’s – well, I’m done. I’m done with all these questions. Corinne Corrigan: Well, thank you. I’ve enjoyed it. Fred Jaravata: Did you really enjoy this? Corinne Corrigan: I did. I did. I was a little nervous. I didn’t know what it was going to be like. But it was fun. Fred Jaravata: OK, Corinne. Thank you so much for joining our show. Corinne Corrigan: Thank you. Fred Jaravata: Thank you. Corinne Corrigan: Thank you. Thank you for having me.
A talk given by Gonzalo Rodriguez-Pereyra (Oxford) at the Moral Sciences Club on 11th November 2014.
Introduction Robert Greene, best-selling author of such books as The 48 Laws of Power, The 33 Strategies of War, The Art of Seduction, The 50th Law (with rapper 50 Cent), and Mastery, joins Jason to talk about his wheelhouse topics – power and strategy. Key Takeaways · Jason's take on the current state of European real estate investing – are there any likely prospects?· What does it mean to become a master in your field? Why do so few people achieve this level of expertise?· Discovering your calling is easy to say but here's how you actually do it· How to avoid hitting the proverbial career wall in your 30's· The telltale clues that you might be an entrepreneur· Charles Darwin's story – how this unassuming young man became one of history's most renowned scientists· Lose your self-absorption and increase your manipulative powers· There are more types of seduction than you might realize. Here are 9 of them. How to discover your natural seductive area· How to apply Napoleon's classic flanking maneuver to your business Links www.powerseductionandwar.comRobert Greene on Wikipedia Bio Best-selling author, Robert Greene, is known for a series of books powered by a broad range of research and sources, synthesized for the masses. His life has been a drastic departure from writers' who never stray from the hallowed halls of academia. After attending UC Berkeley and graduating from the University of Wisconsin with a degree in Classical Studies, Greene worked his way through 80 different jobs before settling into his current writing career (by his recollection), some of which included construction worker, translator, magazine editor, and even a stint as a Hollywood screenwriter. Robert's first book was 48 Laws of Power, which became a runaway hit and has sold more than 1.2 million copies. Numbered among its devotees are such celebrities as 50 Cent, Jay-Z, Kanye West, Chris Bosh, and Will Smith. Greene speaks five languages and is a student of Zen Buddhism, as well as an avid swimmer and mountain biker. Time Stamps · [1:15] Jason's monologue includes a reflection on his recent European trip. Has his opinion on investing there changed?· [7:23] Interview with Robert Greene begins· [7:48] Defining mastery and how to attain it· [9:36] Description of Robert's latest book, Mastery· [10:12] How to discover your life's calling· [12:16] Why so many people hit a career wall in their second decade of work· [15:02] Check yourself. Are you an entrepreneur· [17:16] Charles Darwin. From nobody to one of the greatest scientists ever· [19:00] Robert's background· [20:09] All about manipulation and how to use it for good· [23:05] The 50th Law – 50 Cent; A real American rags to riches story· [25:20] The hidden power in fearlessness· [27:52] 9 types of seducers – which are you?· [30:21] Greatest seducers to ever live· [31:15] Napoleon's flanking maneuver and its effect on business today· [32:04] The Art of War – does Sun Tzu still matter in today's world? Transcript ANNOUNCER 1: Welcome to Creating Wealth with Jason Hartman! During this program, Jason is going to tell you some really exciting things that you probably haven't thought of before and a new slant on investing. Fresh new approaches to America's best investment that will enable you to create more wealth and happiness than you ever thought possible. Jason is a genuine self-made multimillionaire who not only talks the talk but walks the walk. He's been a successful investor for 20 years and currently owns properties in 11 states and 17 cities. This program will help you follow in Jason's footsteps on the road to financial freedom. You really can do it! And now, here's your host, Jason Hartman, with the Complete Solution for Real Estate Investors. Jason's Back from Europe and Hanging in Iceland JASON HARTMAN: Welcome to the Creating Wealth show. This is your host, Jason Hartman. This is episode #330 and I am talking to you today from Reykjavik, Iceland. I'm in a quaint, little café, a little coffee shop here, so pardon the background noise. I think you probably hear a little bit of it, but the intro portion won't be too long before we get to our 10th show guest. And today, that will be the very famous Robert Greene, author of many, many books on Power, Seduction, The 50th Law, The 48 Laws of Power, just a whole bunch of things. He's got a lot of interesting stuff to share with us today and you know, on every 10th show, we go off the strict financial or real state investing topic and we talk about something that just relates to personal interest and personal success and more effective living. Anyway, let me tell you a little bit about my European real estate tour here before we get to our guest today and I am in Reykjavik, Iceland now, as I mentioned. Iceland is a beautiful country, a small country and yesterday, I toured around, went to on what they call the Golden Circle tour and saw the geysers, waterfalls, and the tectonic plates where you can actually see rifts in the ground or big, very large cracks where the tectonic plates separated, and that's quite interesting. Some people go diving in there and it's just crazy to imagine that that's literally where the earth has come apart [LAUGHING], creating totally different continents. Anyway, I was in Spain before this. I toured and looked at quite a few properties. I was in Barcelona and then to the south of that, I was in Malaga and Marbella and, you know, I've been reading a lot in the past few years about Croatia, about Spain, in the real estate markets there based on their very different economic situations and Europe's economic problems in general, and it's just really inspired me to come out and take another look at some of the European properties. I was pleasantly impressed, actually very impressed, with Malaga and just what a high-end area it is and how much Middle Eastern money and really money from all over the world is flowing into that market. You see Ferraris, Lamborghinis, Rolls-Royces, a lot of Saudi money in that market, very high-end stores and shops, and expensive real estate even though Spain is in a tremendous crisis and unemployment is very high especially among the under 30-age group. I'm not sure, really, how the market will go here. I'm gonna continue to research it when I get back. We have a potential local market specialist here and we may actually have them on a future episode. If not on this show, I'll do it on my JetSetter Show. So, we'll see about that, but it has been an interesting trip. Before Spain, I was in Croatia and I was very, very impressed on the last episode. I talked a little bit about Croatia. I went there and Montenegro as well and what a beautiful, beautiful coastline, really, really amazing. Yeah, it's been an interesting tour. Before that, Germany, Switzerland, Austria, and I'm on my way back home after Iceland here today. I've got a helicopter tour and I'm actually gonna take a flying lesson here as well. I'm not a private pilot yet, but I'm pretty close to it. My mom said something very wise to me several years ago when I was about to finish and get my private pilot's license. She said, “Jason, you don't have enough time to get good at this.” [LAUGHING] And I thought, you know, those are probably some words of wisdom, so I listened to my mom and I really didn't pursue getting my license, but I do take lessons here and there and I find it particularly interesting when you can take a lesson on a trip, maybe in a different state or in a foreign country and get some sightseeing at the same time, so pretty interesting. That's what I'm off to do now and then I'll be back home and next week when I talk to you, we will be doing our more regular broadcasting, and I've got some of the investment counselors and local market specialists that I want to get on to talk about their markets, some different markets we're looking at and some current events as well. So we will definitely do that and get back to more regular guests. Of course, this is a 10th show. We're talking to Robert Greene today. So without further adieu, we will be back with Robert Greene in just a moment. [MUSIC PLAYING] ANNOUNCER 2: You know, sometimes I think of Jason Hartman as a walking encyclopedia on the subject of creating wealth. ANNOUNCER 3: Well, you're probably not far off from the truth, Penny, because Jason actually has a three-book set on creating wealth that comes with 60 digital download audios. ANNOUNCER 2: Yes, Jason has that unique ability to make you understand investing the way it should be. It's a world where anything less than 26% annual return is disappointing. ANNOUNCER 3: I love how he actually shows us how we can be excited about these scary times and exploit the incredible opportunities this present economy has afforded us. ANNOUNCER 2: We can pick local markets untouched by the economic downturn, exploit package commodities investing, and achieve exceptional returns, safely and securely. ANNOUNCER 3: I also like how he teaches you to protect the equity in your home before it disappears and how to outsource your debt obligations to the government. ANNOUNCER 2: And the entire set of advanced strategies for wealth creation is being offered at a savings of $94. ANNOUNCER 3: That's right and to get your Creating Wealth Encyclopedia Series complete with over 60 hours audio and three books, just to go to jasonhartman.com/store. ANNOUNCER 2: If you want to be able to sit back and collect checks every month just like a banker, Jason's Creating Wealth Encyclopedia Series is for you. [MUSIC PLAYING] Introducing Robert Greene, Best-Selling Author JASON HARTMAN: It's my pleasure to welcome Robert Greene to the show. He is a famous author on Power and Strategy. He's the author of several books including his latest book entitled Master. The 48 Laws of Power is another great one, The Art of Seduction, The 50th Law, 33 Strategies of War, and he's just got a prolific amount of work on the subject, and covers a lot of controversial areas that other authors just don't really touch, and it's great to have him here. Robert, welcome! How are you? ROBERT GREENE: I'm fine. Thank you very much for having me on your show. JASON HARTMAN: Well, the pleasure is all mine and I like to give my listeners a sense of geography. Are you located, by any chance, in Los Angeles today? ROBERT GREENE: Good guess. Yes, I am. It's where I was born and raised and that's where I live right now, yeah. JASON HARTMAN: Fantastic! Well, that's where I grew up too, so we're both Los Angelinos [LAUGHING]. ROBERT GREENE: Oh, cool. “Mastery” is His New Book JASON HARTMAN: Well, yeah. So, tell us a little bit about your latest book, Mastery, and then I want to touch on some of the other books as well. ROBERT GREENE: Well, Mastery is basically a book about what I consider to be the ultimate form of power that a person can have in this world. I think we're in an environment that's incredibly competitive and difficult. Very few people have any sort of job security anymore. The competition out there is globalized. It's intense. It's everyday. You can't let up your guard ever and I noticed that in all my years of researching very powerful people, they reach this level of intelligence. It's not an intellectual intelligence, it's a practical intelligence. They reach this high level where they've mastered their field. Um, you can visualize it in a way where, let's say, you're professional with chess, it's just a metaphor. But after 10, 15 years of playing chess, you're now like a grandmaster and you're no longer thinking about the chessboard. It's internalized. You have a feel for it. JASON HARTMAN: Right. ROBERT GREENE: Being something in larger dimensions, what they call chunks, and I believe that happens in any profession and once you reach that point, you're on a whole other plane. You're so creative that nobody's gonna replace you, that you're able to see trends and answers to problems that just are invisible to others, and so you're gonna be continually in demand. You're like Steve Jobs or whoever it is. It's not that you have to ignore being good at politics, being a social person is a component of mastery, but once you get to that point, you've got command and you're in demand, and I wanted to show the reader that it's not a matter of your brain size, what college you went to. It's a matter of going through a process with a lot of effort and intensity and you will get there, and it's an incredible feeling, and it's in all professions. The book covers everything from science to sports, to working with your hands, to the arts. So, it encompasses everything. JASON HARTMAN: Well, I think you laid out a few steps. Maybe there are four major steps if I'm remembering correctly in the book, find the thing that is your passion, your great area of interest. What are those if you'd go over with them? The Process of Becoming a Master ROBERT GREENE: Well, the first step is the most important. If you don't follow the first step, you'll never gonna get there and it's not me just saying that, it's the pattern of all highly successful people, and for this book I've researched a lot of very powerful figures in history and also interviewed nine contemporary masters to show that it's a very modern thing. But in all of the stories, everybody starts out with step one and what I call it is discovering your calling or your life's path and the idea is simple. You're born with a unique set of DNA. Your brain is wired in a totally different way. There's something unique about you and what separates very powerful successful people from others is that they are very clear early on in their life about that quality in them that makes them unique. It could be a subject that fascinates them, a problem, an activity, or whatever it is and that clarity carries on into their adolescence and then when it comes time for choosing their profession or career, they have much more clarity. There might be a bit of exploring trying to figure out exactly how to apply their interests but there is a higher degree of clarity than what most people have and because they're so clear about it and they focus so intensely on something that is emotionally engaging to them, they learn much faster, more intensely than other people. That's the key to everything in life. JASON HARTMAN: Sure. ROBERT GREENE: And so you need to be following that path and I show you very clearly in this chapter that you can discover what these inclinations are that you have and carve out a career path that will set you more in that direction than you might be going. A lot of people choose careers because there's money involved or because their parents said this is what you should do and they do alright in their 20s because they're young, etc. but then they hit a wall in their 30s because they're not engaged emotionally, personally with what they're doing and disaster ensues, and you're not aware of where the disaster comes from. It is because you're tuning out. You're not fully engaged. And so this is such a critical step. I can't emphasize it enough and I show you how at any point in your life, you can take this step. You can review and figure out what it is and head in that direction. JASON HARTMAN: Okay. So, Robert I've got to ask you because I'm sure there are people listening that are thinking. That's just never been clear to me. Some people— ROBERT GREENE: Right. JASON HARTMAN: You know, they knew as a kid what they wanted to do. Certainly, what you say makes absolute sense. We all know that the subjects we liked in school, we did well at those usually. Whether it's, you know, liking the subject or even liking the teacher or professor because you relate to them better or relate to the subject matter better. So, you just pick it up naturally because it's your area of interest, but just maybe one tip on how someone can discover what their main area is. ROBERT GREENE: The point of mastery is to slow yourself down. There's no short cut. There's no one week suddenly or one year plan. It takes time and so discovering your life path also takes time and a lot of people are not very in tune with themselves. They've been listening for too long to what other people have to say. They're not aware of what their actual interests are, of who they are. So, it's going to take a couple of, for people like that, it's gonna take a couple of months, but I'd say something for, a simple banal example will be when you open a newspaper or you check something out online, you're surfing a site that you like, what is that subject that when you see in the headline, you go, “God! I have to read that. That just fascinates the hell out of me.” I know for myself if I've cracked open the New York Times and there's an article about some discovery about our earliest ancestors, I can't explain to you why but I am so excited by that. I will read every single article on that subject. Well, there's something like that for you. There's always something that lights up your eyes like when you were a kid where you wanna read about it. These are signs. I give you in the book many other signs, but this is a sign of something that excites you in a primal way, that probably dates back to your childhood and you should follow these indications. You should also follow things that you hate in your career path and you hate working for other people. You hate the politicking and all of the gamesmanship involved. Look at that sign. It's a sign that you are probably an entrepreneur. You probably are meant to be working for yourself. You probably have that individual risk-taking cavalier spirit that is not comfortable working for other people. These are signs and you've got to start becoming aware of them. JASON HARTMAN: Yeah, makes sense, makes sense. Talk to us a little bit more about the mastery subject and I love how, in your books, you tie in so much history and so many historical figures. Every person in business likes to quote and talk about power and talk about the Art of War. Some like to relate to Napoleon. Thoughts there on some of the historical tie-ins and maybe some examples? Masters' throughout History – Da Vinci and Darwin ROBERT GREENE: Well, the icon of this book is Leonardo Da Vinci, you know, like my War book was Napoleon, the Power book was like Louis XIV, Seduction, Cleopatra, The 50th Law was 50 Cent. But here, Da Vinci is sort of the icon in that he is not as mythical as people make him out to be. He's somebody who came from a rather disadvantaged background. He was an illegitimate son. He was kept out of all of the noble professions and so, the only really avenue for him was to pursue art which actually was something the he deeply, deeply loved and I show clearly in the book that what makes Da Vinci so absolutely astounding was an unbelievable work ethic. His motto was “ostinato rigore” which means obstinate rigor, persistent rigor. He said, “I'll figure something out just by sheer persistence and work.” That's a lot of love and I have all sorts of examples.Of all these other icons in our history that we look up to as being almost superhuman like Mozart, like Einstein, [INDISCERNIBLE], Thomas Edison, Henry Ford, and I showed clearly that what separates these people is the incredible level of persistence and work ethic and they've put in their proverbial 10,000 hours to the point of maybe 20,000 hours, and that's exactly the foundation that makes them so incredibly brilliant. And one of my favorite stories in the book, I mean, I know your audience is business people but this book relates, these stories relate to anybody in any field, it's about Charles Darwin because it was such a good story. He's a young man who doesn't really know exactly where he sits in this world. He's not good in school, his father thinks that he's kind of a loser, he just likes to go hunting and observing things in nature and collecting specimens, and finally, he gets this chance to go on a voyage around the globe on the ship, the HMS Beagle. His father said, “You're a fool to go on that. Why would you think of something like that? There's no money. You have no training in it.” And he grabbed it. There's something inside of him that tells him this is it, and in the process of going on this voyage, he transformed himself from the sort of naïve, inexperienced young man to someone who becomes the greatest observer of nature that we've ever had in history and transformed himself into a scientist. And I take this as a metaphor for the transformation that could happen to any person who goes through what I call a rigorous apprenticeship phase like Darwin went through. So these are some of the historical figures that I have in the book from all different fields and as I said, I have nine contemporary figures like great architect, Santiago Calatrava, or the scientist, Temple Grandin, or the great entrepreneur, Paul Graham who started the company, Y Combinator. So, there are lots of stories in it. JASON HARTMAN: Well, how did you get into it? What is your background? I mean, were you a history professor or just a student of it [LAUGHING]? ROBERT GREENE: No, I mean, the part of the reason why I'm able to do what I do is I don't have any traditional background. So, if I were a history professor, I couldn't write the kind of books that I write because academia kinda forces you into a certain mold. JASON HARTMAN: Puts you in a box, yeah. Screenwriter to Philosopher ROBERT GREENE: Yeah, and my background was I studied, in college, Greek and Latin, Classics, very interested in History and Literature, and then I went out in the work world, and I worked in journalism, and I worked in film and Hollywood, and I had many different jobs, but I was always reading a lot of history and observing people very closely. And so, I like to write books that are incredibly practical because I'm a very practical person. I don't like reading academic books on a subject that have no relationship to my life but on the other hand, I like to relate it to history and I like to make the readers think very deeply about their lives. So because I don't fit into these categories, I'm able to kind of be my own self, so to speak. JASON HARTMAN: Yeah, yeah, very interesting. So, manipulation, it's a controversial subject, but there are many books and writings on how people can manipulate others to get the result they want out of them, you know, how to change people, how to get your kids to do what you want, how to [LAUGHING] get your dog to do want you want, how to get your spouse or significant other. Can people be manipulated? I think you're going to say yes to that [LAUGHING] from knowing your work, but tell us uh, if so, how? It's all About Manipulation ROBERT GREENE: Well, you know, you're referring to my earlier books. It's just sort of a subject uh, theme in all of them. It's not so much a question. Manipulation is a loaded word. You can also use the word influence, persuasion. Can we convince other people? Can we get them to do what we want them to do or can we get them to do something that won't hurt us? And of course we can. If not, we would be miserable, powerless creatures. JASON HARTMAN: Well, and not only that, you know. I know it's a loaded word and that's why I used it but to inspire some or instill some controversy into the discussion but the old saying is nothing happens until somebody sells something and whether it's selling an idea or a product, that's where a lot of progress comes from. ROBERT GREENE: Yeah and so, I'm trying to make you focus very deeply on the other person that you're dealing with. The greatest problem that everybody faces in this realm of persuasion or manipulation is that they're self-centered. The focus of their attention is inward so I need to sell this product. I need to make money for my family. This is what I like. The other person must like that as well. That said, are you projecting other than something from inside yourself and you're not focused on the social environment, on what people are thinking, on their needs, etc. All of my books are simply a way to twist you like a yoga pose out of that constant self-centeredness and get you to focus so that you really, really, really understand where that other person is coming from. Once you have that understanding, you can begin to lower their defenses. You can begin to make them move in your direction whatever that might be. At the furthest extreme, you can manipulate them and I show in “The 48 Laws of Power” that extreme. I go into it and I show you that very powerful people are often, can be often very manipulative and here are some of the laws that they use in that realm. You can either take that knowledge to help defend yourself or if you really need to, you can use this. Uh, and that would be sort of the extreme but the tie that connects all of these stuff together is your ability to get out of yourself and focus deeply on the other person. Once you do that, a weird kind of magic can start happening. You can start figuring out other people. You're never gonna totally understand that person you're trying to sell to. There's always an element of mystery. It's a margin game. If you're able to increase your margin of intelligence and knowing about them from 5% to 20%, suddenly a kind of magic happens where you're able to align your interests and figure out what it is that's gonna seal the deal or whatever it is you need and that's, that's really, really what my books are about. Writin' with 50 Cent JASON HARTMAN: Robert, when you wrote about the, the book about “The 50th Law” you talked about 50 Cent, the rapper. What could 50 Cent teach us? [LAUGHING] you know, it's uh - ROBERT GREENE: Well actually it's the book that is co-written with 50 Cent. JASON HARTMAN: Oh, okay. ROBERT GREENE: Uh, and basically that was an interesting process in which we spent about five or six months together and I interviewed him intensely and together we kind of shaped the book and so the uh, more or less collaborative process and it's an amazing story. I'm not a celebrity person. I could really care less about Leonardo DiCaprio. I'm more interested in everyday people and how they get by in their lives but 50 is an amazing story, he's a very real person. He doesn't have all this celebrity crap around him and there are a couple of things that we can learn from him. First, the total American rags to riches story of someone who come from the absolute worst environment and how he's then able to raise himself up from this bottom to be a very wealthy, very powerful individual. It's an amazing story and it has incredible lessons. The other element of it is I determined that there's a quality about him, that is the source of his power and it's what I call, what we call fearlessness but it's not a fearlessness of taking, being ah, beating people up or being aggressive or for guns or anything. It's a kind of philosophical fearlessness in front of anything that happens in life. He's not afraid of failing. He's not afraid of what other people think of him. He's not afraid of being alone. He's not afraid of being different and when you have that kind of fearless attitude, you are going to get somewhere in this world in whatever you do and so in this book, we have 10 chapters. Each chapter is about a kind of fear that you have. It's very primal and very human and here's how you confront that fear and how you overcome it, uh, it's all of course illustrated. Each chapter begins with a story from his life illustrated and then we go into history about other great Americans and people around the world who have used uh, a, a similar idea and one of the chapters for instance, just to give you an example, is a fear that a person might have in business is a fear of other people. I know that sounds a little bit counterintuitive but a lot of people in business don't really want to know too much about their customers, about their audience.They think they do but they're afraid of having their own ideas overwhelmed. They want to go in with a preconceived notion because it's simpler that way. It's easier that way and people are always more comfortable with themselves than what other people are thinking and this is uh, this is actually a fear alright, we demonstrated very clearly and what made 50 so successful was he broke down all those barriers and he became incredibly, incredibly close to his audience to the point of having a deep understanding. He is one of the first people in music to create a website that has unbelievable uh, access to his own audience and information from them. He's very, very close to who – whoever he's trying to sell, whatever he's trying to sell. It's a fear that he, that he did overcome and we go very deeply into that chapter so that's sort of what that book is about. JASON HARTMAN: Very interesting, you know, with, with all of your books, it begs the question do you have a favorite? Robert's Favorite Book is… ROBERT GREENE: Well, it's, you know, they're like children and it's sort of hard – JASON HARTMAN: [LAUGHING] ROBERT GREENE: To choose – JASON HARTMAN: You can't pick a favorite, right? ROBERT GREENE: Yeah. Well, you can, I mean, the 48 Laws of Power was my first one and it made me – it transformed me from an unhappy person writing in Hollywood to having this great life so it's always a love of that. The Art of Seduction was my – it is the most fun to write as you can probably imagine by the title and then uh, the Mastery is the newest one so it's closest to me so maybe right now, that's my favorite child, but The 50th Law was a lot of fun to write. I can't say that the Book on Warfare was not fun because it was a very tough subject but even that book, you know, had some closeness to my heart so it's hard really to say. JASON HARTMAN: Um-hum. Yeah. I, I knew that would be impossible to pick – like asking a parent to pick their favorite child. ROBERT GREENE: Yeah. JASON HARTMAN: But, interesting. Well, you mentioned about the, the Seduction book and – ROBERT GREENE: Yeah. JASON HARTMAN: I mean, wow, what an amazing compilation in the Art of Seduction of these different, these different personas that people can exhibit and, and you give examples of people throughout history that have done this. How about if you take a few of those and then, I would be remiss not mention that this isn't just about seduction in a romantic or a sexual sense but at the end, you talk about self-seduction and how to sell anything to the masses. And Along Came Seduction ROBERT GREENE: Yeah, I mean, uh, I'm trying to write a book about the psychology of seduction which I say permeates us as human beings. We are continually vulnerable to being seduced so certainly, we think of sexual seduction and there's a lot of that in this book but it is also social seduction, how you can charm and get people around you to like you. It's also political seduction. John F. Kennedy seduced the Americans in 1960 and won an election. It's clearly marketing and I go into, as you say, the soft sell. So, I'm interested in what ties all of that together. What ties Cleopatra to John F. Kennedy or, or whomever and there are ties to it. It always involving the same seduction, the same psychology which is how do you lower people's resistance so they do more or less what you would like them to do and in seduction, you're creating a kind of pleasurable environment where it's not about overt manipulation. It's about what you're getting people to do is something that they actually want to do or will like and I'm gonna show you how you can have that power. The beginning of the book, the first half, I, I identified nine types of seducers and you're probably gonna have the, hopefully, at least one of these types and maybe a combination of two, possibly three and the idea is to be a seducer, you can't just be reading a book and following certain strategies. You're gonna seem cold-hearted, particularly, a woman will see right through you and you won't get very far and it's not fun. So, the trick is to discover what is naturally seductive about yourself as an individual. So, I identified these types and I make you more aware of what makes you a[INDISCERNIBLE] or a rake or if you're a woman, a siren or a dandy or, or the charismatic, etc. The second half of the book I go into various strategies that people typically use in the seduction. Um, and, all of these chapters have application to marketing, to politics, to selling anything as well and, and in there, it's clear when you read them. But the second half of the book, I kinda show you starting from the beginning, with knowing who it is that you're trying to seduce, to the last strategy, which is sort of consummating the deal whatever that might be. And along the way, I give you stories from the greatest seducers who had ever lived in all of these different fields. JASON HARTMAN: What book took you the longest to write? The Art of War Revisited ROBERT GREENE: Well, uh, the War book is sort of my version of Sun Tzu's Art of War and in, for business people, it's maybe in some ways, the most applicable, but it was a very difficult subject because first, there are so many books written on warfare. The subject is so big. And what I wanted to do is take all of the most classic strategies that exist in the history of warfare. And identify this and then show you the psychology behind them and how they're applicable to everyday situations, to business, to dealing with people. Uh, and that is not easy. It's not really been done before to show you on the pulley and the use of the flanking maneuver. It's actually a strategy that has incredible application to running a business. So it took a lot of thinking on my part and a lot of work, a lot of hard work. So that book was the longest and hardest to produce. JASON HARTMAN: I would agree that when you read The Art of War and try to relate it to modern times I don't think that's very easy to do. People talk about it, maybe [LAUGHING] in an attempt to sound intellectual or something but if you ask me, I didn't find that much relation to business. Maybe I'm missing something but [LAUGHING] or my attention span is too short. I don't know. ROBERT GREENE: Well the Sun Tzu is an amazing book, I used it very much in my book on war, but you're right. I understand exactly what you're saying but let's say a scene in Sun Tzu is all about not going to war unless you have to and using your resources, marshaling them to the best possible usage, so you're not wasting life and you're not just ruining your country in the process. Well, I created a chapter out of that which I called First Economy and that means using your resources, who you are, your business, your army to the absolute maximum economical usage. So you're not wasting anything and basically the idea is your reliance on money or technology is making you probably less creative than you want to be. You can be incredibly creative with less actual material resources and do better in your business than you are if you're so addicted to spending a lot of money and buying things that you think are gonna improve your productivity, etc. That's an idea of Sun Tzu that you can take as metaphor and apply to sports, to business, to life in general, and that's sort of what my approach was. JASON HARTMAN: Yeah, very interesting. Well, of course your books are available at the bookstores and on Amazon.com and the web site is powerseductionandwar.com, all written out and anything else you'd like to people to know in closing Robert?Closing Comments ROBERT GREENE: No. Yes, you say powerseductionandwar.com. There will be links there to Mastery, etc. Now, I guess it's just that these are books that are meant, you know, they are longer. They're not a simple read like a lot of self-help books but if you take the time, they're all very practically oriented and reading them, you don't have to read them [INDISCERNIBLE]. You can skip the chapters that seem more irrelevant but it kinda gets under your skin. I'm trying to alter your way of thinking, your life and about success. I'm trying, we discussed a little earlier about making you less self-centered. It's a process and I'm trying to change how you think and I think reading the book in that spirit, it, it has incredible practical value if you give it a time. So that's sort of the [INDISCERNIBLE] JASON HARTMAN: Yeah, what I, what I love about your work is just all that historical ties and I, I feel like – ROBERT GREENE: Yeah. JASON HARTMAN: I learn so much about history, reading a book about power or seduction which I would never think you know, [LAUGHING] that would come out on that's why your work is a just very interesting, very well thought out. I've got to ask you, do you have another book in your sights? The recent release of Mastery but what's next? ROBERT GREENE: Well, a lot of my books kinda come out of an idea in another book uh, in those that I've written and so with Mastery, I have a chapter on what I called Social Intelligence and the idea in that chapter is to say, it's not just enough to master your field and be technically brilliant at it. You also have to be really good with people and intelligence, intellectual intelligence actually goes hand-and-hand with people intelligence, the social intelligence. I'm gonna write a book that expands that idea into something much larger. I'm gonna give you what I called a deep, deep understanding of the elements of human nature that go back thousands of years, that are embedded in each person. So that when you read this book, you're gonna have a much better sense of what is motivating the people around you. You're gonna be able to read them a lot better than just of kinda go operating blindly. And I'm gonna show you how you can develop this kind of reading ability and I'm gonna give you, as I said, this kind of encyclopedia about human nature so you'll have a much better knowledge of what motivates people. JASON HARTMAN: That sounds fascinating and I really, really look forward to that book. We will definitely have you back on to talk about – ROBERT GREENE: Okay. JASON HARTMAN: Social intelligence and Robert Greene, thank you so much for joining us today. ROBERT GREENE: Oh well, thank you so much for having me. It was fun. JASON HARTMAN: Be sure to call in to the Creating Wealth Show and get you're real estate investing and economics questions answer by me personally. We'd love to have you call in, share your experiences, ask your questions and a lot of other people listening have those very same questions so be a participant in the show at (480) 788-7823 that's (480) 788-7823 or anywhere in the world via Skype JasonHarmanROI, that's Jason Hartman ROI for Return on Investment. Be sure to call in to the show. We are going to enter all callers in a drawing for some nice prizes as well, so be sure to call in the show and I look forward to talking with you soon. ANNOUNCER: This show is produced by The Hartman Media Company. All rights reserved. For distribution or publication rights and media interviews, please visit www.hartmanmedia.com or e-mail media@hartmanmedia.com. Nothing on the show should be considered specific personal or professional advice. Please consult an appropriate tax, legal, real estate, or business professional for individualized advice. Opinions of guests are their own and the host is acting on behalf of Platinum Properties Investor Network, Inc. exclusively. Transcribed by Joseph
A place with no no'sRevelation 21:1-51. A place of Indiscernible beauty.2. A place of incomprehensible blessingsNo more seaNo more PainNo more tearsNo More death3. A place of Incorruptible believers.