Autism Confidential

Across seventeen separate kitchens and living rooms, the same patterns surface. Children who cannot describe their own symptoms have aggressive behaviors read as "just autism" instead of as pain, neuroinflammation, catatonia, or seizure activity. Inside these families, profound autism arrives with company: Whitney on tuberous sclerosis complex, Lydia on type 1 diabetes, Heather on SYNGAP1-related disorder, Jillian on PANS/PANDAS, Erica C. on Duchenne muscular dystrophy, Elena on Lennox-Gastaut syndrome and tonic-clonic seizures, Michelle on gastrointestinal disease. Whitney and Christine describe catatonia severe enough to require electroconvulsive therapy (ECT), a treatment most listeners have never been told is part of profound autism care. The same response keeps coming back from too many clinicians, a psych med and a restraint order in place of a workup. Diagnostic overshadowing has a body count, and these mothers can name it. Three other themes repeat. Trust yourself; you know your child best. Fierce love is a clinical skill. When the system has no service that fits your child, you build one. Mothers in this episode fight schools and therapy centers after their children are harmed or their rights are trampled. Other mothers describe building transportation services, programs, and supports from scratch because no one else would. NCSA exists because this population has been missing from the public conversation about autism. These mothers are the correction. Mother's Day 2026, NCSA released a short reel on the hour from 10am-6pm CT on Facebook and Instagram. We conducted interviews with mothers who had been nominated by the community. This podcast episode is a compilation of the 17 short stories shared. Articles for each mother with more detail will be coming soon on the NCSA website. NCSAutism.org CHAPTERS: 00:00:00 Stephanie00:02:50 Renee00:05:46 Whitney00:08:47 Susan00:10:41 Kim00:12:24 Erica P.00:14:36 Lydia00:16:48 Jen00:19:52 Heather00:23:44 Christine00:27:37 Amy00:29:29 Jillian00:32:43 Keynote: Kiki00:42:11 Erica C.00:45:44 Zuheil00:48:20 Elena00:52:44 Michelle

Jonathan Machnee did close to a decade inside the neurodiversity movement as a true believer. Then his military intelligence training kicked in. He started analyzing the battlefield, mapping the factions, writing the reports. He left the movement, but he didn't leave the work — he turned it into a Substack called Dispatches from the Autism Wars and a podcast called Christianity on the Spectrum . In this conversation, Jonathan joins NCSA Executive Director Jackie Kancir for a wide-angle, two-hour after action review of where the autism discourse has been, where it's gotten stuck, and what an honest path forward might require. We trace the inflection points from Jim Sinclair's 1993 "Don't Mourn for Us" speech through the importation of the social model of disability into autism advocacy. We unpack a Rawlsian framework for autism ethics — the veil of ignorance applied. We borrow from Bonhoeffer, Hannah Arendt, and Aldous Huxley. We name the linguistic tricks (jingle fallacies, Mott-and-Bailey arguments, manipulative underspecification) that have hollowed out the words we need most. We sit honestly inside the conversations the autism community has been told it's not allowed to have — about facilitated communication, about vaccines, about whether to split the spectrum diagnostically. Jackie shares her daughter's story: a sixteen-year diagnostic odyssey that ended at a SYNGAP1 genetic mutation. Jonathan shares why he no longer believes that one word — autism — can carry the weight we keep asking it to carry. They disagree, civilly, exactly once. Mentioned in this episode: Jim Sinclair, "Don't Mourn for Us" (1993) The social model of disability The Lancet Commission on Profound Autism The SPARK study and de novo genetic mutations Amy Lutz, Chasing the Intact Mind The Autism Science Foundation Dietrich Bonhoeffer on the wheel of injustice Hannah Arendt on the loss of common language John Rawls's veil of ignorance About the guest: Jonathan Machnee is the writer of Dispatches from the Autism Wars on Substack and the host of Christianity on the Spectrum . He is a former U.S. Army military intelligence officer with a graduate background in counter-forensics, and a Level 1 autistic adult. About the host: Jackie Kancir is the Executive Director of the National Council on Severe Autism (NCSA), a national nonprofit advocating for individuals, families, and caregivers affected by severe forms of autism. Connect with NCSA: https://www.ncsautism.org

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 Connection https://www.daily-joy.org/video/fantastic-cellists-deep-musical-connection/ Cellist with autism finds his purpose, voice in music https://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.org Opportunity Village: http://opportunityvillage.org Together 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.com Shop 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