Autism Confidential

Arzu Forough, President and CEO of Washington Autism Alliance, is our guest discussing crisis care for severe/profound autism. She discusses medical necessity, governing policies such as Medicaid, mental health parity, navigating insurance, types of placements, and the systemwide deficiencies in serving the population with severe and challenging behaviors. Washington Autism Alliance works to expand access to healthcare, education and services for people with Intellectual Developmental Disabilities including Autism. WAA provides legal services, individual case management and multi system navigation for individuals and families. www.WashingtonAutismAlliance.org

National Council on Severe Autism Webinar, May 15, 2024 We feature Eileen Lamb, one of the most visible and prolific social media personalities in the autism world. Eileen is an author, blogger, photographer, podcaster, the director of social media for Autism Speaks, and the mother of three children, one of whom, 11 year-old Charlie, has an extreme form of autism and another, Jude, who is higher functioning. She also serves on the board of NCSA. In this webinar and conversation Eileen shares the realities of Jude's profound autism, including persistent pica (ingestion of inedible objects), spitting, property destruction and aggression, her experiences being bullied online by neurodiversity adherents, her own autism diagnosis, and how she finds the time to share her story with the world while dealing with her son's life-threatening behaviors. Moderated by Jill Escher, NCSA. Links: The Autism Cafe: https://theautismcafe.com Adulting on the Spectrum podcast: https://www.autismspeaks.org/podcast/adulting-spectrum-meet-our-hosts Find us at NCSAutism.org

Autism Confidential returns to its usual podcast format for a discussion about April, Autism Month featuring host Jill Escher and guest Thomas McKean, a pioneering autism self-advocate. Jill and Tom discuss: Biden's signing of a proclamation declaring April "Autism Acceptance Month," historical background about Autism Month, some op-eds offering a dissenting view from the rah-rah rosy tone of April, acceptance of our kids v acceptance of autism, the very broken definition of "autism," and of course, guitar! Links to material discussed in the podcast: https://www.disabilityscoop.com/2024/04/03/white-house-embraces-autism-acceptance-over-awareness/30811/ https://www.cdc.gov/ncbddd/autism/toolkit.html#:~:text=April%20is%20Autism%20Acceptance%20Month,and%20connectedness%20throughout%20the%20community https://www.post-gazette.com/opinion/insight/2024/04/07/profound-autism-awareness-month-neurodivergence-disorder-labels/stories/202404070031 https://www.newsweek.com/i-love-my-child-i-hate-his-autism-1888870 Amie, by Pure Prairie League:  https://youtu.be/lPgNbFni0oI?si=JWwD6swVhTyMn7jx

Karen Fessel, executive director of the Mental Health and Autism Insurance Project, returns to our National Council on Severe Autism webinar series to explain how insurance coverage works for children and adults with severe autism. She goes into detail about the governing laws and about how you can fight at several levels to obtain the coverage your child needs. Followed by Q&A with the audience. Links: https://mhautism.org

Featuring: Ashley Kim, Together for Choice Jackie Ceonzo, SNACK* NYC Note: For a video recording with slides, please see NCSAutism.org/webinars. There is a nationwide shortage of long term supports and services available and it disproportionately affects adults with intellectual/developmental disabilities in need of 24/7 support. The need for such housing has been ignored and gone unanswered for decades by many responsible for the well-being of this population. While Congress expected that the ADA's integration mandate would be interpreted in a manner that ensures that individuals who are eligible for institutional placement are able to exercise a right to community-based long-term services and supports, that expectation has not been fulfilled. We believe that people with disabilities should have the right to choose where they live, work, and receive services that are appropriate for their needs and preferences without those responsible for making choice a reality blocking that path with red tape. Links: Togetherforchoice.org SNACKNYC.com

This episode features Stephanie M. Morris , MD, is Medical Director, Center for Autism Services, Science and Innovation (CASSI) At Kennedy Krieger Institute, Baltimore. She is a neurologist with special qualifications in child neurology, and is also an assistant professor in the Department of Neurology at the Johns Hopkins University School of Medicine. She works with kids with autism and I/DD and especially genetic conditions such as Fragile X syndrome and Neurofibromatosis Type 1 (NF1). In this webinar, Dr. Morris explains what seizures and epilepsy are, the different types, the high prevalence of seizures in autism, particularly in severe autism, various treatment approaches, and accessing care. Moderated by Jill Escher, president, NCSA For more information, please see NCSAutism.org

National Council on Severe Autism Webinar, February 15, 2024, featuring: Jill Escher, Escher Fund for Autism Walter Zahorodny, PhD, Rutgers University This webinar examines the most important and poorly understood phenomenon in autism — the sharply escalating rates over the past several decades. The speakers explain: • The overwhelming evidence for a true increase in autism in the U.S., including specifically California (Escher) and New Jersey (Zahorodny), an increase that is likely between 2,000-5,500% • The evidence for a true increase in other high-income countries (and lower rates in lower-income countries) • The lack of evidence for commensurate autism rates in older birth cohorts • The flaws in the arguments that certain studies (eg, Hansen or Brugha) show there has been no increase in autism • Autism rates are still increasing, and no one understands why • The tired, unsupported rationalizations that the autism increase stems from awareness and diagnostic shifts • An emerging hypothesis that could help explain at least part of the surge, and the 6 key findings from autism research • The reasons for widespread denial of the increase in autism Links: JillEscher.com EscherFund.org Autism Epidemic, Autism Research, Autism Genetics, Autism Epigenetics, CDC ADDM Network, Developmental Disabilities, Aspergers, Autistic Disorder, Gene-Environment Interaction, Heritable Impacts of General Anesthesia, Sevoflurane

This episode features Alison Singer, president of Autism Science Foundation, and Craig Snyder of IKON Consulting, discussing why the Autism CARES Act should be reformed before it is re-authorized. This federal legislation sunsets on September 30, 2024 and efforts are underway to continue it with another budget authorization. But the CARES Act has glaring shortcomings: it has turned away from the most important questions in autism; it has sidelined the most severely affected part of the autism population; it serves the needs of entrenched interests rather than the urgent needs of the American people. Please listen to Alison and Craig discuss: • The history of the act, which started as The Combating Autism Act • The problems with the IACC, the Interagency Coordinating Committee created by the Act • The failure of the CARES Act to effect meaningful change, all while autism rates continue to climb and supports and services become more difficult to obtain • How the CARES Act should explicitly require efforts to address profound autism; why the NIH needs an Office of Autism Research, not an IACC What our community can do to help reform the CARES Act, and more Link:NCSA Letter re CARES Act Reauthorization. Includes link to ASF white paper: https://www.ncsautism.org/blog//ncsa-submits-concerns-about-the-autism-cares-act-reauthorization-now-is-the-time-for-bold-action

We interview Peg Kerswell, the author of a bold new book chronicling her experiences raising a daughter with extremely severe autism. Ellie is nonverbal and self-injurious, she requires 24/7 care with intensive supervision. The grueling, nonstop cycle of care wears Peg down to the bone, but after Ellie is placed in a treatment facility, Peg finally has the chance to breathe, and take an account of the onslaught of traumas the family has endured — a process that prompts her to start writing her story. Peg and Jill Escher discuss the origins of the book, what Peg wants readers to walk away with (hint: the dire realities of severe autism and the desperate need for programs), and the many humorous musings that give her the ability to cope with an absurdly impossible situation. Jill says it is extremely well written, disarmingly honest and one of the best autism memoirs she's ever read. Links: Girl Storm on Amazon: https://a.co/d/cQpq5bk Jill Escher's review of Girl Storm: https://www.ncsautism.org/blog//lost-in-a-bermuda-triangle-of-profound-autism

We interview Rosanne Katon Walden, the mother of Adam Mandela Walden, a young man with autism with remarkable musical talent. At the age of 2 he taught himself harmonica, and to sign opera phonetically. Rosanne nurtured this budding talent and at age 6 bought Adam a thrift store cello, and Adam fell in love with it. Now after years of training and performance, Adam is a student at Berklee College of Music in Boston, where he is further developing his skills, including composition and conducting. Jill and Roseanne discuss Adam's early years, the nature of his musical gifts, how, with help, he navigates college, and what the future might look like.Note: the opening music is Adam playing Bach at the recent Stars of the Spectrum concert at Fenway Park. Links:Fantastic Cellist's Deep Musical Connectionhttps://www.daily-joy.org/video/fantastic-cellists-deep-musical-connection/Cellist with autism finds his purpose, voice in musichttps://spectrumnews1.com/ca/la-east/arts/2021/12/21/cellist-with-autism-finds-his-purpose-and-his-voice-in-music There are a lot of other videos and articles to see including Adam's interview in “From The Top” if you just google "Adam Mandela Walden"https://youtu.be/mLoGBJRxsZ4?si=oudW4TaShenEOq8h

Richard Edley, PhD is President/CEO of Rehabilitation and Community Providers Association (RCPA) of Pennsylvania, and a nationally recognized leader pushing for care options for adults with autism and I/DD. He is also the father of an adult son with profound autism. In this episode he and Jill discuss:— The scope of the I/DD system in PA and the lengthy waitlists— The pressure of increasing autism cases— Program closures and selectivity against those with acute needs; the erosion of services for high needs— The workforce (DSP) crisis— Pennsylvania's restrictive interpretation of the HCBS Settings Rule— Advocates' mania for closure without offering realistic solutions— Arbitrary rules that create barriers to functional services— The difference between ideology and reality about I/DD the need to base systems on facts and data, not "theology"— The problematic use of the "Supports Intensity Scale"— Worries about how "Selective Contracting" will reduce choice— How to think about fixing our broken system that seems designed to collapse Link:RCPA: https://www.paproviders.org

This interview will blow your mind. You will have just one thought: "We need a thousand more Mary Ogles!" Mary is a force of nature and CEO of A New Leaf near Tulsa, Oklahoma, which serves 500 clients with I/DD in vocational, transition and residential programs. When Mary sees a need she goes for it and has vastly expanded their operations, including development of a residential village serving adults of all functional levels. She and Jill Escher discuss:—How she entered this field—How the campus-based housing did not get subjected to HCBS "heightened scrutiny"—The vision and mission to serve adults with severe and profound autism—The need for a huge amount of private fundraising to cover actual costs—How they raised millions to build their village—The 2-year Transition Academy serving students with mid-functioning autism and I/DD—The horticulture work the clients do, and their retail operations—Staff development and retentionWe must "open the floodgates" to vastly more services and housing to serve the need. Amen!Link:https://www.anewleaf.org

The next few episodes feature esteemed speakers from the recent Together for Choice conference held in Las Vegas Nevada. First up is Molly Nocon, CEO of Noah Homes in San Diego County, California. Noah Homes is a beautiful residential community for adults with I/DD, although their client profile generally does not include challenging behaviors. Recently Noah Homes has expanded to include senior care for adults with I/DD and dementia (common with older people with Down syndrome), and now Molly is investigating possibilities for a program serving adults with autism and behaviors. Jill and Molly discuss the difference between arbitrary policy edicts and on-the-ground realities, and the need for truly person-centered planning.Links:Noah Homes: https://noahhomes.orgOpportunity Village: http://opportunityvillage.orgTogether for Choice: http://togetherforchoice.org

State policy is hugely consequential for autism families — from state Medicaid programs, to support worker wages, to health care, to guardianship, to recreation and respite. This week we bring you the audio of an NCSA webinar held on September 13, 2023 focusing on advocacy at the state level. If you'd like to see the video or slides, please see our website NCSAutism.org.We start with an intro to federal policy, with Gayle Gerdes, Health Policy Source, who is helping NCSA on voicing our positions on federal policy matters. Then our main speaker is Susan Goldstein, a dynamo mother of a young woman with severe autism who parlayed her passion for autism programs into creating Florida legislation that expanded autism services in the state, and was later elected a state representative. Today she serves as a lobbyist for the Legis Group in Florida. Susan was featured in a prior Autism Confidential podcast, and this episode greatly expands on the concepts she discussed there — with a huge abundance of advice and inspiration. Hosted by Jill Escher and Leanne Morphet, NCSA Policy Chair.

We are delighted to bring back Dr. Alycia Halladay, Chief Science Officer of the Autism Science Foundation, who we first featured way back in Episode 4. Alycia and host Jill Escher debate some of the more recent developments in autism research, including studies on genetics, prevalence, early intervention, and ... TikTok! It's a long episode and a bit "in the weeds" on some pretty technical topics but we hope you find it thought-provoking. First they discuss a new paper that probes the role of "common genetic variants" in autism risk, and Jill expresses her dissatisfaction with the assumptions underlying the study. Prevalence is rising, and Alycia says it's not just one thing driving the increase. Early interventions show some promise in improving functioning in young autistic children, but not in overcoming autism. And, surprise (not), Tik Tok is full of autism misinformation....Links: The contributions of rare inherited and polygenic risk to ASD in multiplex families https://www.pnas.org/doi/abs/10.1073/pnas.2215632120 The earlier the better: An RCT of treatment timing effects for toddlers on the autism spectrum https://journals.sagepub.com/doi/full/10.1177/13623613231159153 Building Community and Identity Online: A Content Analysis of Highly Viewed #Autism TikTok Videos https://www.liebertpub.com/doi/abs/10.1089/aut.2023.0019 ASF Podcast - Podcast: Tik-Tok for autism information? Nope https://autismsciencefoundation.org/resources/podcast-tik-tok-for-autism-information-nope/ Meet Alycia: https://autismsciencefoundation.org/teams/dr-alycia-halladay/

The vaccine-autism myth is rearing its head again, particularly via statements by Democratic presidential candidate Robert F Kennedy, Jr., so it's never been more important to set the record straight about something that by now should be abundantly clear: vaccines do not cause autism. We are delighted to feature Dr. Paul Offit, an internationally recognized expert in the fields of virology and immunology. He serves as director of the Vaccine Education Center and physician in the division of infectious diseases at Children's Hospital of Philadelphia. Among other things, we discuss:—The extremely rare (actual) risks of childhood vaccinations—Mercury and aluminum in vaccines do not cause autism—The immune response to vaccines does not cause autism—The fraud that gave rise to the vaccine-autism myth in the first place—The lack of biologically plausible mechanisms linking vaccines to autism—There's no evidence in epidemiology for a link between vaccinations and autism—How we've become complacent about the risks of devastating infectious diseasesThis podcast is sponsored by:National Council on Severe Autism NCSAutism.orgAutism Confidential podcast AutismConfidential.org

If Jill were to create a pantheon of Autism Gods, Jackie Ceonzo would be right there in the center. She is the rare autism mom who struck out to create recreational and enrichment classes and activities for children and adults with severe forms of autisms. Including "the biters," as Jackie puts it. The kids who routinely get rejected from other special needs programs because of their behaviors. The kids who cost the most money. Jackie is a force of nature who founded SNACK*, a program located in midtown Manhattan, where clients can access a wide variety of options and "Snacktivities," including swim, art, music, yoga, soccer and cooking lessons. The ratio is typically 1:1 depending on client needs. It's a rare gem that should be available, well, everywhere, but she faces many obstacles, including discriminatory policies that penalize programs for those with severe autism, and the need to raise a lot of money to cover the considerable costs.This is a can't-miss episode!Links:SNACK* NYC: https://www.snacknyc.comShop Cup of Joe Coffee and other items: https://shop.snacknyc.com

Last week, a long-form essay about autism by Jill Escher was published in The Free Press (TheFP.com). The article was about how we have grown increasingly complacent about the autism crisis at a time when autism rates continue to increase and the dire need for long-term care services is exploding. The piece received a lot of attention and Jill found herself deluged by comments and questions. In this episode Jill responds to some of the messages, emails and comments she received, including about vaccines, neurodiversity, Feda, autism genetics, and the fact parents can't die. Read The Free Press article here: https://www.thefp.com/p/the-autism-surge-lies-conspiracies

For nearly three decades an extraordinary autism mom has been pushing the envelope for new programs, new funding streams, and new policies to benefit children and adults with autism. After Susan Goldstein, a tough and sophisticated bond trader, received an autism diagnosis for her daughter (who is now nearly 32) she threw herself into creating new therapeutic options for such children, when almost no options were available, joining forces with Dan Marino to raise funds and advocate. After some years of outspoken advocacy she was asked to run for the state legislature, and won. Now, she is a partner of the Legis Group, a lobbying firm, where she represents clients in the health services sector, including those serving I/DD. Links: http://www.thelegisgroupfl.com/team/susan-k-goldstein/

For almost all of its history autism was considered a "pervasive developmental disorder." It involved serious deviations from normal development, serious impairments in communication, social relatedness and behavior. Academic papers often had a simple shorthand for autism: "devastating." But today, if you're quirky and anxious but otherwise completely normal, poof! you too can have "autism." In this double-header episode, Jill Escher comments on reports that the singer has autism, followed by an earlier recorded discussion with Dr. Lee Wachtel and Dr. Carmen Lopez-Arvizu about the highly diluted and trivialized term autism.Dr. Wachtel is the Clinical Director of the Neurobehavioral Unit at Kennedy Krieger Institute. Dr. Lopez-Arvizu is the Medical Director of the Psychiatric Medical Health Program at KKI. Links: Jill Escher: The Sia Shaming Spectacle Is a Tragedy for the Arts and the Autism Community https://www.ncsautism.org/blog//sia-shaming Jill Escher: Stop Hating on Maddie Ziegler: She Was Magnificent in Sia's “Music”https://www.ncsautism.org/blog//stop-hating-on-maddie-ziegler-she-was-magnificent-in-sias-music Lee Wachtel: In Defense of Profound Autismhttps://www.youtube.com/watch?v=284K2by1FO4

We again speak with Allen Wong, DDS, is Director of Advanced Education in General Dentistry, Residency Program, University of the Pacific. He teaches dentistry for special health care needs, and hospital dentistry as well. Episode 1 focused on prevention, daily care and clinical care. Here in episode 2 we focus more on issues of access to care, lack of clinical resources for adults, the many disincentives for practitioners to treat this population, and questions about anesthesia for dental procedures. Links:Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities – A Fiscal Analysishttps://ncd.gov/publications/2022/medicaid-oral-health-coverage-adults-IDD

By popular request we are featuring two episodes devoted to all things teeth and dentistry, which looms as a huge issue for autism families. Allen Wong, DDS, is Director of Advanced Education in General Dentistry, Residency Program, University of the Pacific. He teaches dentistry for special health care needs, and hospital dentistry as well. Daily tooth care can be difficult for severely autistic kids and adults, and accessing clinical care can be especially difficult when there is a very sensitive or uncooperative patient. Dr. Wong discusses the following with host Jill Escher: • Recent updates to the dentistry school curriculum that will expand clinical care for patients with disabilities • The importance of prevention, including daily care, sealants, flouride varnish, x-ray alternatives • Rinsing the mouth to remove acidic food and drink, and stay hydrated • How meds can cause dry mouth, increasing risks for tooth decay • Benefits of telemedicine in special needs dentistry • An AI toothbrush • A magic bullet to reduce impact of cavities: SDFIn Part 2 we will address issues around access, insurance and anesthesia

As summer approaches, we are happy to feature two perspectives on traveling with autism. First we speak with Lara Sandora, a parent advocate, travel blogger, and special needs vacation home provider. She and Jill discuss "tips and tricks" for traveling with severe autism, including air travel, choosing a destination, and simplifying along the way. Then we speak with Pernell Wint, a Business Development Manager with Unique Vacations which operates the Beaches Resorts chain in the Caribbean. The Beaches resorts located in Jamaica and Turks & Caicos are certified Autism Centers with trained staff and onsite amenities that cater to autism families. Links: Lara's Travel Blog: https://www.thepieceofmindretreat.com/blog/ Vacation Home in Kona, HI: https://www.konacoastvacations.com/nakukui-ekolu-in-kahakai-estates/ Beaches Resorts: https://www.beaches.com Beaches Autism Progam: https://www.beaches.com/all-inclusive/autism-friendly Contact Pernell: pwint@uvi.sandals.com

In Part 2 of our discussion with Melissa Harris, Deputy Director, Disabled and Elderly Health Programs Group, Centers for Medicare and Medicaid Services (CMS), we focus on the Home and Community Based Services (HCBS) Settings Rule. The Settings Rule has been the source of much discussion, debate and dread. We discuss the rules around person-centered plans, unfunded mandates, "settings that isolate," and heightened scrutiny in the states. ••• Please pardon the technical difficulties, Ms. Harris had some difficulties with her connection but in almost all cases the audio can be understood.

We are happy to present a two-part series with Melissa Harris, Deputy Director, Disabled and Elderly Health Programs Group, Centers for Medicare and Medicaid Services (CMS). Her role is to develop and implement policies to advance Home and Community Based Services (HCBS).  Here in Part 1 we discuss Medicaid generally as it relates to adults with disabling autism. HCBS waivers are intended to serve those with developmental disabilities in need of an institutional level of care, but waitlists in many states are very long, and providers willing to serve those with complex needs can be very scant. We discuss the staffing crisis, the availability of extra funds ot the states under the Rescue Plan, the issue of "waiver on paper" that does not translate into actual services, ICF availability or lack thereof, the rising rates of autism in the Medicaid system, and more. ••• Please pardon the technical difficulties, Ms. Harris had some difficulties with her connection but in almost all cases the audio can be understood.

After Tom McKean (ep 29) suggested that NCSA invite Morénike Giwa Onaiwu, a prominent neurodiversity advocate, on the podcast, we were thrilled when she agreed to join us for a special episode about the splintered autism community. We had a productive conversation, and spoiler alert, not many sparks flew. In reality, we found we had much more in common than not, and share a passion for tangible progress in the field of lifespan autism care and housing.Morénike is a global activist-scholar, author, and community leader who is passionate about human rights, justice, and inclusion. Morénike is American-born to immigrant parents, possesses undergraduate and graduate degrees in International Relations, Education, and Interdisciplinary Humanities. She is involved in various social justice advocacy endeavors including neurodiversity, public pedagogy, multimodal learning, anti-HIV stigma, participatory research, technology, disability justice, and racial and gender equity. She currently serves on the federal Interagency Autism Coordinating Committee (IACC).  Learn more at https://morenikego.com/.

This is an audio recording of the NCSA March 14, 2023 webinar featuring Dr. Lee Elizabeth Wachtel, one of the world's foremost clinicians serving patients with severe and profound autism. She is Medical Director of the Neurobehavioral Unit at Kennedy Krieger Institute and Professor of Psychiatry at Johns Hopkins University, Maryland. She discusses:—The vast chasm between high-functioning neurodiversity and profound autism—How the Lancet Commission defined Profound Autism—The many ways autism causes suffering in this population—How no other medical diagnosis is subjected to same demands by the milder impaired population—And much more Links: To watch the presentation (with slides) on YouTube, please visit the NCSA YouTube channel at https://www.youtube.com/@nationalcouncilonsevereaut902 National Council on Severe Autism: NCSAutism.org/Autism Confidential: AutismConfidential.org/

We are very fortunate to host Paul Aronsohn, New Jersey Ombudsman for Individuals with Intellectual or Developmental Disabilities and Their Families. Paul serves a unique role not seen in any other state. The Ombudsman is an independent position working to assist families, a large portion of which are affected by severe autism, and improve systems of care. The position was created by an act of the NJ legislature in 2017 after a strong push by parents and advocates. In conversation with NCSA President Jill Escher they discuss: —His unique role in the state; his immersion in the field, seeing what families are facing first-hand —Data about increasing autism prevalence in New Jersey (1 in 35 8 year-olds, and 20,000 estimated severe autism cases) —His office's Annual Reports which do not mince words about the crises facing families and the state —The disconnect between those making decisions and the families affected by them —Issues he hears about from families every day: access to treatment, housing, Direct Support Professional crisis, shortage of residential options —Efforts to address issues on a systems level, via interagency groups —Speaking truth to power, on state letterhead —And much more Links: Ombudsman office: https://nj.gov/treasury/njombudsman/ 2021 Annual Report: https://nj.gov/treasury/njombudsman/documents/2021-Annual-Report.pdf Paul's contact info: Disability.Ombudsman@treas.nj.gov

The brilliant new documentary film, "Beyond" features Tamara Mark, a Hollywood actress and dancer, and now single mom living in LA with her two grown sons who suffer from severe autism, Ian and Harry. It is raw and unflinching in its portrayal of the hardships of severe autism, but also the intense bond and love between mother and child. The film explores many themes: isolation, trauma, coping, and most of all, the desperate need for long-term supports for the severely autistic. We have a candid conversation about the film and our broken care system with the filmmakers, Tamara, and her new husband Marc. Featuring: Dru Ellen Miller, Producer Thiago Dadalt, Filmmaker Tamara Mark Marc Olson Links: https://www.docbeyond.com https://www.dellenmillerproductions.com

Pioneering autism advocate Thomas McKean joins us again (he first appeared in Ep 13) to discuss the bizarre online phenomenon of anti-parent bullying by militant autism self-advocates. Like witch hunts of yore, autism parents are too often accused, without evidence, of all manner of sins: torturing their children, infantilizing them, of self-aggrandizement, of ableism, eugenics, and more. Tom McKean says "Enough!" to this nonsense in an emotional discussion with NCSA's Jill Escher. Please listen to the very end for Tom's gorgeous, spontaneous soliloquy about the profound love autism parents have for their children. Find Tom on Facebook: https://www.facebook.com/thomasamckean

Outdoor activities bring joy to countless people with autism, all across the spectrum. We are incredibly honored to have two of the nation's top leaders in the field of sports and outdoor recreation for children and adults with autism and disabilities. Sallie Bernard is the founder of Ascendigo, based in Carbondale, Colorado, and Katherine Hayes Rodriguez, is the former director of Achieve Tahoe, located in California. We discuss their winter and summer programs, how these activities promote well-being in the participants — even those with extreme challenges — and their families, some inspirational stories, costs and overcoming obstacles, and accessing sports in your area. Hosted by Jill Escher, president of National Council on Severe Autism Links: Ascendigo.org AchieveTahoe.org MoveUnitedSport.org AutismConfidential.org NCSAutism.org

Bittersweet Farms, established in the mid-1980s in Ohio, is a pioneering model of a farmstead-based residential and day program serving adults with autism complex behavioral needs. In a world where severely autistic adults are routinely rejected from programs, Bittersweet is a rare treasure. We talk with Dustin Watkins, the program's executive director, about the nature of the programs, the benefits of an outdoor, open-space setting for many adults with autism, the meaning and purpose of their physical and creative efforts on the farm, issues around Medicaid ICF and HCBS models, staffing challenges, the community and connection found in programs like Bittersweet, the financial model, and more. Learn more: Website: BittersweetFarms.org Book: https://www.amazon.com/Creating-Quality-Adults-Autism-Spectrum/dp/1032220627/ref=sr_1_1?crid=2DRJ1HBWBA3RE&keywords=creating+quality+of+life+for+adults+on+the+autism+spectrum&qid=1673662592&sprefix=creating+quality+of+life%2Caps%2C175&sr=8-1

This is the third of three episodes featuring autism expert and polymath Dr. Manuel Casanova. In conversation with host Jill Escher, he discusses Transcranial Magnetic Stimulation (TMS), how he originated the research on TMS with respect to autism, how the treatment can help patients in certain respects (some are surprising!), the limits of TMS when it comes to severe autism, and what you might consider if you're interested in a trial for your loved one. Brought to you by the National Council on Severe Autism Website: NCSAutism.org

This is the second of three episodes featuring autism expert and polymath Dr. Manuel Casanova. He and host Jill Escher explore a number of controversies in the autism field, including language, the Neurodiversity movement, diagnosis, self-diagnosis, the attack on autism research, the over-hype of genetics, what we can learn from international efforts, triumphs and failures of autism research, and the dim prospects for gene therapy. Brought to you by the National Council on Severe Autism Website: NCSAutism.org

This is the first of three episodes featuring autism expert and polymath Dr. Manuel Casanova, who recently retired after an illustrious career in neuroscience and neuroanatomy. The author of 18 books and innumerable papers, Dr. Casanova is known for his pioneering work identifying abnormalities of neural growth and migration in developing autism brains, and irregularities in connectivity and the critical excitation-inhibition balance. He is also known for his work discovering abnormalities of "minicolumns" in the cerebral cortex. They also discuss the prospects for a true biomarker of autism. In this somewhat technical discussion he explores the pathologies seen in autism brains with host Jill Escher. Brought to you by the National Council on Severe Autism Website: NCSAutism.org

In this episode we revisit the topic of electroconvulsive therapy (ECT) for autism, exploring a new study out of Vanderbilt Medical Center finding resoundingly positive results, and few side effects of the therapy. Our guest is lead author Joshua Smith, MD, Assistant Professor of Psychiatry and Behavioral Sciences at Vanderbilt University Medical Center and the Vanderbilt Kennedy Center. We discuss not just the findings of the study, in which 30 of 32 patients experienced marked improvement, but also the problems of access to treatment and the lingering and unnecessary stigma around ECT. The study: Use of ECT in Autism Spectrum Disorder and/or Intellectual Disability: A Single Site Retrospective Analysis https://link.springer.com/article/10.1007/s10803-022-05868-6

The Truth About ECT in Autism Episodes 21 and 22 feature three esteemed guests talking in detail about ECT, or electroconvulsive therapy, for autism and other disorders. Though controversial, ECT can be remarkably effective in many cases for alleviating distressing symptoms that are unresponsive to medication. Our guests are: Dr Lee Elizabeth Wachtel, clinical director of rhe Neurobehavioral Unit at Kennedy Krieger Institute Dr Amy Lutz, VP of NCSA, author, and professor at University of Pennsylvania, and mother of a young man with autism Dr Jennie Goldstein, a child psychiatrist in Israel, who is the mother of a young man with autism We discuss: What is ECT? How does it work in the clinic? How has it helped Amy and Jennie's sons? What does the research say about risks and benefits?What are the policy issues and obstacles? Links: • Amy's book: Each Day I Like It Better: Autism, ECT, and the Treatment of Our Most Impaired Children, by Amy Lutz https://www.amazon.com/Each-Day-Like-Better-Treatment/dp/0826519768 • Article in the Atlantic, How Shock Therapy Is Saving Some Children with Autism https://www.theatlantic.com/health/archive/2016/10/how-shock-therapy-is-saving-some-children-with-autism/505448/ • The 24-min BBC documentary, on YouTube, which features Jonah and an autistic young woman, and in which you can see what an actual treatment looks like. https://www.youtube.com/watch?v=1x_FR3IX_uY • Blogpost on NCSA: Stopping Aggression and Self-Injury After All Else Failed https://www.ncsautism.org/blog//stoppingaggression

The Truth About ECT in Autism Episodes 21 and 22 feature three esteemed guests talking in detail about ECT, or electroconvulsive therapy, for autism and other disorders. Though controversial, ECT can be remarkably effective in many cases for alleviating distressing symptoms that are unresponsive to medication. Our guests are: Dr Lee Elizabeth Wachtel, clinical director of rhe Neurobehavioral Unit at Kennedy Krieger Institute Dr Amy Lutz, VP of NCSA, author, and professor at University of Pennsylvania, and mother of a young man with autism Dr Jennie Goldstein, a child psychiatrist in Israel, who is the mother of a young man with autism We discuss: What is ECT? How does it work in the clinic? How has it helped Amy and Jennie's sons? What does the research say about risks and benefits?What are the policy issues and obstacles? Links: • Amy's book: Each Day I Like It Better: Autism, ECT, and the Treatment of Our Most Impaired Children, by Amy Lutz https://www.amazon.com/Each-Day-Like-Better-Treatment/dp/0826519768 • Article in the Atlantic, How Shock Therapy Is Saving Some Children with Autism https://www.theatlantic.com/health/archive/2016/10/how-shock-therapy-is-saving-some-children-with-autism/505448/ • The 24-min BBC documentary, on YouTube, which features Jonah and an autistic young woman, and in which you can see what an actual treatment looks like. https://www.youtube.com/watch?v=1x_FR3IX_uY • Blogpost on NCSA: Stopping Aggression and Self-Injury After All Else Failed https://www.ncsautism.org/blog//stoppingaggression

A new commentary, "A full semantic toolbox is essential for autism research and practice to thrive," published in the journal Autism Research, the journal of the International Society for Autism Research, counters the call by several neurodiversity advocates to limit language and terms relating to autism. Two of its authors, Amy Lutz and Jill Escher, discuss the commentary and its context. Read the commentary here: https://onlinelibrary.wiley.com/doi/full/10.1002/aur.2876 Abstract: "Individuals diagnosed with autism spectrum disorder (ASD) present with a highly diverse set of challenges, disabilities, impairments and strengths. Recently, it has been suggested that researchers and practitioners avoid using certain words to describe the difficulties and impairments experienced by individuals with ASD to reduce stigma. The proposed limitations on terminology were developed by only a subset of the autism community, and the recommendations are already causing negative consequences that may be harmful to future scientific and clinical endeavors and, ultimately, to people with ASD. No one should have the power to censor language to exclude the observable realities of autism. Scientists and clinicians must be able to use any scientifically accurate terms necessary to describe the wide range of autistic people they study and support, without fear of censure or retribution."

Michelle Wright is the Maryland-based mother of a young man with severe autism whose condition markedly improved with the use of medical cannabis. Michelle dove deep into science and practice, even obtaining a masters degree in medical cannabis from the University of Maryland. In this episode she shares her story, and discusses the ever-evolving landscape of clinical use, research and policy around cannabis for autism. Links: News story about Michelle and her son: https://www.cbsnews.com/amp/baltimore/news/maryland-woman-earns-degree-in-medical-cannabis-after-treatment-dramatically-helps-her-autistic-son/ Whole Plant Access for Autism: WPA4A.org Project CDB: ProjectCBD.org Americans for Safe Access: https://www.safeaccessnow.org Society of Cannabis Clinicians: https://www.cannabisclinicians.org

Fecal smearing and anal digging are two of the most distressing behaviors seen in autism. In this episode, we speak with Dr Joyce Tu, Ed.D., BCBA-D, and Kelly Bermingham, BCBA, of Easter Seals Southern California, both of whom have extensive experience working with children and adults with severe autism, and feces-oriented behaviors. With host Jill Escher they discuss toilet training techniques, the role of functional behavior analysis, encopresis, stopgap measures, and insurance coverage for medically necessary interventions. Links: Dr Tu at Easter Seals: https://www.easterseals.com/southerncal/our-programs/research-division/verbal-behavior-lab.html Toilet Training Course: https://www.citepro.com/courses/toilet-training

Drowning is the leading cause of death in children with autism under age 14. Shirley Fett and Tammy Anderson are working to change that. Shirley, an executive board member of Autism Society San Diego, helped pioneer pool events and lessons in her community after looking for help with her two sons with autism, who are now 29 and 31. Tammy Anderson, the CEO of AquaPros Swim School, San Diego, has been pioneering swim programs for the autism community for more than 20 years, and trains teachers around the country. Links: Autism Society San Diego: https://www.autismsocietysandiego.org Aqua Pros Swim School: https://www.aquapros.org Swimming With Autism book: https://www.amazon.com/Swimming-Autism-2nd-Tammy-Anderson-Lee/dp/0578149214

The National Autism Association is a leader in helping families and communities prevent autism emergencies, particularly when it comes to the prevalent and often-lethal phenomenon of elopement. NAA President Wendy Fournier and Co-founder Lori McIlwain join NCSA's Jill Escher discussing NAA's efforts to address this national crisis, sharing their research efforts and shocking statistics, and offering advice for families. They also discuss the cruel trend of parent-blaming. Roughly half, or 48%, of children with an ASD attempt to elope from a safe environment. The vast majority of elopement-related deaths are by drowning. Links: https://nationalautismassociation.org

Kate Movius move to Hollywood to pursue an acting career but then her firstborn son, Aidan, was diagnosed with severe autism. Kate's life became overwhelmed by lack of sleep and her son's frequent, and horribly dangerous, elopement even after her house was reinforced “like Fort Knox.” Kate then devoted herself to advancing first responder training by founding Autism Interaction Solutions, dedicated to “Providing effective education in autism identification, safety and communication tactics and improving safety for adults and children at risk of eloping.” She is also an advisor to LA Found, a Los Angeles County program that helps caregivers of those living with Alzheimer's, dementia, autism or other cognitive impairments. Links: Autism Interaction Solutions LA Found

This month, September 2022, we honor the second year of the September 26th Project — the annual emergency preparedness reminder for autism and special needs families created in memory of Feda Almaliti and her son Mu — with a series of podcasts about safety, first responders, and preparing for emergencies. Our first guest is someone who was a great friend to Feda and is herself a superstar in the Bay Area autism community, Mizpah Brown-Rich. Mizpah is the founder of Joshua's Gift, a nonprofit that creates events for autism families, does first responder training, promotes autism awareness and much more. Links: Joshua's Gift

The internet sees rampant bullying of autism parents but Tom McKean is calling BS. Diagnosed with autism in his teens, Tom, now in his mid-50s, became one of autism's very earliest self-advocates, along with Temple Grandin and a few others. Grounded in his desire to help those less fortunate than himself, he now writes and blogs about autism and its bizarre culture wars. Highlights: • His (bitter) experience being institutionalized in his late teens • His unexpected journey toward becoming an autism advocate • He has decades of witnessing parents' sacrifice and love for their children, but some of the newer and more vitriolic advocates are ignorant of the broader world of autism • Interviewer Jill Escher has been chatting with Tom about guitar for several months, and the two perform an impromptu and fairly ear-offending duet! Links: Tom McKean on Facebook here: https://www.facebook.com/thomasamckean Blogpost about the autism puzzle piece logo: The Autism Puzzle Piece Logo: What It Really Means

Knowledge is power! And Michigan-based Jill Barker, mother of two men with developmental disabilities, ages 45 and 37, wants you to know the latest about federal and state DD policy. Jill publishes The DD News Blog, https://theddnewsblog.blogspot.com/, which provides “News, information, and commentary for families and friends of people with developmental disabilities.” Highlights: • Lies that parents are told • Attacks on guardianship • The de-funding of vital programs for adults with DD • The importance of advocacy at a time of ideology

Michelle McFarland McDaniels is a dynamo mom from the south side of Chicago who sees a terribly bleak landscape when it comes to programs for young adults like her 25 year-old daughter with severe autism. But her optimism about the future has pushed her to create a new nonprofit THRIVE! Enrichment Services, which hopes to offer an array of services in her area. Highlights: • Her beloved daughter's severe autism, and sometimes unpredictable behaviors. The lack of services available for adults with challenging behaviors. • How she hired a security guard to escort her daughter to a dentist appointment two miles away, concerned about police response to behaviors, and also carjackings! • Her vision for THRIVE! Enrichment Services, including behavioral therapy and hopefully someday a physical center where programs can be provided. • Mission: "Our mission is to help individuals who have autism or I/DD with comorbid challenging behaviors lead productive, meaningful and fulfilling lives." • A vision for services that are truly person-centered and based on the interests and skills of each individual. • Slogging through the process of getting a program approved and funded Links: Website: https://iwillhelpyouthrive.org Video: https://www.youtube.com/watch?v=HZHNplt2vxU&t=14s GoFundMe: bit.ly/HelpUsHelpThemTHRIVE

Jess Ronne, mother of 8, including a teen son with autism and other neurodevelopmental disorders, is the main protagonist of a new documentary film, Unseen: How We're Failing Parent Caregivers. Jill Escher talks with her about the genesis of the film, its goals and reaching new audiences with her important message. Highlights: • As the title suggests, these stories of extreme caregiving tend to be hidden from the public eye. The film gives these families a voice and tells their stories. • While the film reveals a certain amount about their son Lucas, it does not portray the most harrowing aspects of his disability. • Jess wants community members and churches to become more supportive of families living with children and adults with extreme special needs. • Caregivers are in desperate need for more support at home and also day and residential programs. • It's okay for caregivers to say, “I don't want to do this for the rest of my life.” Links: Home of Unseen: Caregiverdoc.com Unseen trailer here The Lucas Project here

Lucy Kross Wallace is an accomplished writer and sophomore at Stanford University who has written about her disenchantment with the neurodiversity movement. In conversation with Jill Escher, Lucy tells about how she was diagnosed with Level 1 autism at age 18, after years of severe mental illness and failed treatment (she prefers the term Asperger Syndrome). She found autism a useful framework to help her understand herself and enable her to exit the hospital and enroll in college, and the first year at Stanford she found camaraderie and meaning in the neurodiversity movement. The neurodiversity crowd featured much black-and-white thinking but it felt good to her to be crusading against the ableism of the world. She explains how neurodiversity is part of a larger critical social justice movement, but found it was not aimed at “justice” as she understood it. Lucy felt her life on Tumblr was a bit of a performance but she is no longer on social media, she considers it a mental health risk. Lucy thinks the diagnostic scheme for autism does not reflect actual functional realities, and asks what is the unifying factor for autism? “We need multiple labels, it's hard to talk about when ‘autism' means so many things.” They discuss the postmodern roots of the idea that language constructs reality, a driving force behind neurodiversity tropes, and the bullying of parents by online activists. Links: NCSA: The cognitive distortions that feed neurodiversity radicalism Quillette: My brief spell as an activist

Matthew Siegel, MD, Director of the Developmental Disorders Program, Maine Behavioral Health, Associate Professor of Psychiatry and Pediatrics of Tufts University and Faculty Scientist, MMC Research Institute His program provides a continuum of care for people with severe autism, including outpatient services providing a range of services, and a 12-bed inpatient unit that serves youth age 20 and under. Patients usually have a coexisting psychiatric disorders and exhibit unsafe behaviors. The inpatient stay is usually about 30-40 days. They also have a partial inpatient program for part of the day in addition to an in-home program for very young children. The new Glickman Lauder Center of Excellence in Autism and Developmental Disorders brings treatment under one roof. Highlights: • The number of these inpatient units has increased to about 15-18 across the country, though that's not enough by any means. (NCSA is developing this list and will place it on the NCSAutism.org website). Some are listed here. • A new clinical group is focused on developing best practices — they will provide a list of resources too. • Excellent work from multiple disciplines is needed to address severe behaviors, which have various roots. • The first few days in inpatient are devoted to observation, often stripping away medications, then building a plan including a behavior plan, speech, OT. • They are looking for a decrease in behaviors over time, not just reacting to the past 24 hours. They look for a lowering of intensity in behaviors, taking much data (it's an ABA-based program) and analyzing. People don't tend to go to zero, but safe enough to be discharged, with in-home services, usually funded by Medicaid. They work to transfer the behavior plan to them. About 1/3 of the patients do not return home but go to a group setting. A portion of patients are still not safe even after a comprehensive treatment program — they cannot live with parents and need a facility or residence staffed and able to handle those behaviors. • A dire lack of step-down options for those who need intensive care. In Maine, there was no change to reimbursement for 10 years, and after Covid there is an intensified staffing shorting. Now there are 2 places in the entire state, and they are full. And out of state, they are full too. Right now the system is entirely paralyzed. People can't get out of the hospital, and others can't get in. • The program had been spread across multiple sites, but now thanks to a large donation they have created The Glickman-Lauder Center, which also includes serving adults as outpatients. A very exciting step. They also do research and training. Having an excellent center does a lot to support research and training. • Research: How well is this population being attended to by the research community? They surveyed all the treatment studies over the past 20 years, and found the inclusion of people with severe autism has dropped dramatically; 2/3 of studies are not looking at severe autism. One could argue that those who are most severely affected should receive the most attention in research. • We can't let the desire to be inclusive to get in the way of attending to the needs of severe autism. Links: Maine Behavioral Health: https://www.mainehealth.org/maine-behavioral-healthcare Glickman Lauder Center: https://www.mainehealth.org/Locations/Maine-Behavioral-Healthcare/Center-of-Excellence-in-Autism-and-Developmental-Disorders Autism and Developmental Disorders Research Collaborative: https://mmcri.org/?page_id=1089