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Autism Confidential: Daily Summaries Delivered
by Autism Confidential Podcast
Autism Confidential shines a light on the hottest issues in the world of autism, including topics often shunned by conventional media. Who cares for autistic adults after their parents die? How can we fix our broken care system? What interventions help, or hurt? Join hosts Jill Escher, Amy Lutz and others from the National Council on Severe Autism as they take on the hardest questions of autism with leading thinkers and doers.
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- May 11, 202658 min
Special: Mothers Day 2026 - Amplifying Mothers
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.orgCHAPTERS: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
- Apr 21, 20261h 50m
Autism Wars - After Action Review with Jonathan Machnee
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 disabilityThe Lancet Commission on Profound AutismThe SPARK study and de novo genetic mutationsAmy Lutz, Chasing the Intact MindThe Autism Science Foundation Dietrich Bonhoeffer on the wheel of injusticeHannah Arendt on the loss of common languageJohn Rawls's veil of ignoranceAbout 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
- Jun 3, 20241h 18m
Episode #058 - Crisis Care for Severe and Profound Autism
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
- Jun 3, 20241h 13m
Episode #057 - Standing Up for Severe Autism on Social Media: Eileen Lamb
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
- Apr 22, 202459 min
Episode #056 - Sounding Off About Autism Month
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
- Apr 22, 20241h 17m
Episode #055 - Karen Fessel: Insurance Coverage for Severe Autism
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
- Mar 4, 20241h 23m
Episode #054 - Discrimination by Design: How Policies Threaten the Most Severely Disabled
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
- Mar 1, 20241h 22m
Episode #053 - Seizures and Epilepsy in Severe and Profound Autism
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
About Autism Confidential
Autism Confidential shines a light on the hottest issues in the world of autism, including topics often shunned by conventional media. Who cares for autistic adults after their parents die? How can we fix our broken care system? What interventions help, or hurt? Join hosts Jill Escher, Amy Lutz and others from the National Council on Severe Autism as they take on the hardest questions of autism with leading thinkers and doers.
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