Welcome to Autism Confidential, the podcast from the National Council on Severe Autism. We shine 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 NCSA as we take on the hardest questions of autism with leading thinkers and doers.
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Episode Archive
Episode 50: A Stunning New Memoir from the Darkest Corner of Profound Autism
We interview Peg Kerswell, the author of a bold new book, Girl Storm, 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’s review of Girl Storm: https://www.ncsautism.org/blog//lost-in-a-bermuda-triangle-of-profound-autism
Episode 49: A Musical Mind: The Story of Adam Mandela Walden, a Cellist with Severe 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.
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
Excerpt from his composition for The Reason I Jump
https://youtu.be/mLoGBJRxsZ4?si=oudW4TaShenEOq8h
Episode 48: Richard Edley: We Need Reality-Based Programs for Adults with Severe Autism
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" - which is barely relevant to autism
— Worries about how "Selective Contracting" will reduce choice
— How to think about fixing our broken system- a system that seems "designed to collapse"
Link:
Link to RCPA: https://www.paproviders.org
Link to episode: https://youtu.be/lnwduhvH7cg
Episode 47: Mary Ogle: We Must Open the Floodgates to More Autism Housing and Services
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 retention We must "open the floodgates" to vastly more services and housing to serve the need. Amen!
Link: https://www.anewleaf.org
Link to episode here
Episode 46: Molly Nocon: The Benefits of Residential Communities and the Need for Choice
The Benefits of Residential Communities and the Need for Choice: Molly Nocon, CEO of Noah Homes 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
Link to episode here
Episode 45: Susan Goldstein: Effective Autism Advocacy in Your State
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.
Episode 44: Dr. Alycia Halladay: Autism Research Roundup
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.
Episode 43: Dr. Paul Offit: Battling Vaccine Myths Again
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 diseases.
Episode 42: Jackie Ceonzo: Serving Severe Autism in New York City
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!
Episode 41: Jill Answers Questions About Her Article in The Free Press
Last week, a long-form essay about the sorry state of 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
Episode 40: Susan Goldstein: A Champion for Autism in Florida
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/
Episode 39: Sia's' "Autism" and What Does "Autism" Mean Anyway? A Double-Header
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 Sia 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
Jill Escher: Stop Hating on Maddie Ziegler: She Was Magnificent in Sia’s “Music”
ee Wachtel: In Defense of Profound Autism
Episode 38: Dental Care for Patients with Autism, with Dr. Allen Wong, Part 2
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 Analysis
Episode 37: Dental Care for Patients with Autism, with Dr. Allen Wong, Part 1
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.
Episode 36: Have Autism, Will Travel: Lara Sandora, Advocate, and Pernell Wint, Beaches Resorts
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.
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
Episode 35: Title: The HCBS Settings Rule, Part 2 with Melissa Harris, CMS
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.
Episode 34: Medicaid Funding for Autism Services, Part 1 with Melissa Harris, CMS
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.
Episode 33: Bridging the Divide
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).
Episode 32: The Case for Profound Autism, with Dr. Lee Wachtel
A 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
Episode 31: A Rare Gem: Paul Aronsohn, New Jersey's Ombudsman for I/DD
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
Episode 30: The Film Beyond Takes Viewers into an Unimaginable World of Profound Autism
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
Episode 29: Just Say No to the Bullying of Autism Parents
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.
Episode 28: Finding the Fun: Skiing and Sports with Severe Autism
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
Episode 27: Thriving with Severe Autism at Bittersweet Farms
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
Episode 26: TMS and Neuromodulation in Autism Treatment, with Dr. Manuel Casanova
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.
Episode 25: Autism Controversies! With Dr. Manuel Casanova
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.
Episode 24: Inside the Autism Brain, with Dr. Manuel Casanova
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.
Episode 23: The Truth about Electroconvulsive Therapy (ECT) for Autism, Part 3, with Dr. Joshua Smith
We explore 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.
Episode 22: The Truth about Electroconvulsive Therapy (ECT) for Autism, Part 2
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?
Episode 21: The Truth about Electroconvulsive Therapy (ECT) for Autism, Part 1
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?
Episode 20: Stop Sanitizing Language About Autism
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, Dr. 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
Episode 19: Medical Cannabis for Autism
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/ AutismConfidential.org/ National Council on Severe Autism NCSAutism.org/
Episode 18: The Poop Episode by Dr Joyce Tu and Kelly Bermingham
YouTube: https://youtu.be/JEP8Jny7HiA
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.htmlToilet Training Course: https://www.citepro.com/courses/toilet-training
Episode 17:The Power Duo Teaching Kids with Autism to Swim
YouTube: https://youtu.be/hcEu5dJNtEQ
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
Episode 16: National Autism Association’s Wendy Fournier and Lori McIlwain— A Passion for the Safety of Autism Families
YouTube here
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
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Episode 15: Kate Movius: Training First Responders and Preventing Elopement
Kate Movius moved 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
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Episode 14: Mizpah Brown-Rich
Apple podcasts here
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 of Feda’s 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
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Episode 13: Thomas McKean Stands Up for Autism Parents
Episode page here
Apple podcasts here
Tom McKean was among the very first autism self-advocates and had pivotal roles at Autism Society, along with folks like Temple Grandin. He has been an outspoken champion for autism parents and against online bullying. His heartfelt compassion pours through this episode (which ends with an impromptu concert… of sorts).
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Episode 12: Jill Barker Wants You to Understand Developmental Disability Policy
Episode page here
Apple Podcasts here
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
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Episode 11: The Vision to Launch a New Program Serving Those with Severe Behaviors, with Michelle McFarland McDaniels
Apple Podcasts here
Spotify here
Episode page here
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 background as an educator. Her beloved daughter's severe autism, and sometimes unpredictable 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
Episode 10: Unseen: Jess Ronne and a New Documentary about Extreme Caregiving
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Jess is 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.
Episode 9: Lucy Kross Wallace on the Distortions of the Neurodiversity Movement
Episode 8: Matthew Siegel, MD on Treatment Programs for Severe Autism Behaviors
Episode 7: ICFs, HCBS, Say What? A conversation with VOR’s Hugo Dwyer
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We speak with Hugo Dwyer, executive director of VOR, or Voice of Reason, a national advocacy organization representing the needs of individuals with intellectual and developmental disabilities. VOR works to create quality long-term care options and protect choice and quality of life choices for those with I/DD.
Episode 6: Cammie McGovern, Author of Hard Landings: Looking Into the Future for a Child with Autism
Episode 5: Care Ethics, with Philosopher and Disability Scholar Eva Feder Kittay (April 2022)
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Host Amy Lutz gets philosophical with prominent scholar Eva Feder Kittay, PhD, Distinguished Professor of Philosophy at Stony Brook University/SUNY. Dr Kittay, the mother of a severely intellectually and physically disabled daughter, discusses what caregiving means as an ethical concept, the importance of caregivers, how parents can't do it alone, and how the labor of caregiving deserves more respect. How can care ethics help resolve contentious debates within the autism community?
Episode 4: Is Autism Research Failing Us? A Conversation with Alycia Halladay, PhD (April 2022)
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Alycia Halladay, PhD, is Chief Science Officer of Autism Science Foundation and has years of experience working to promote and fund autism research. NCSA President Jill Escher talks with her about progress -- and lack thereof -- in autism research over the past 30 years.
Episode 3: Autism and I/DD Housing, with Scott Mendel and Ashley Kim Weiss of Together for Choice (April 2022)
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April 2022. What are the different types of housing for autistic and I/DD adults? What's an ICF? What is HCBS? Why are waitlists so long? Why do some disability rights advocates attack freedom of choice in housing? Scott Mendel and Ashley Kim of Together for Choice put it in perspective, hosted by Jill Escher.
Episode 2 - Yes, There Is (Obviously) an Autism Epidemic (April 2022)
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As autism rates have crept upward year after year, it has become common to shrug off the scorching numbers as little more than artifacts of "better awareness" or "diagnostic substitution." But the overwhelming weight of evidence suggests that the increase is real, the result of increasingly common neurodevelopmental disability, and not mere diagnostic shifts. NCSA President Jill Escher discusses this phenomenon with guests Walter Zahorodny, PhD, Associate Professor of Pediatrics, Rutgers University Medical School, and Josephine Shenouda, co-investigator of the Autism and Developmental Disabilities Monitoring Network in New Jersey.
Episode 1 - Introducing ... Autism Confidential! (March 2022)
Autism Confidential is the new podcast sponsored by the National Council on Severe Autism. We focus on the topics of importance to those impacted by severe autism, including policy, research, treatment and services.
Disclaimer: All views expressed on Autism Confidential are those of the individual speakers, and do not necessarily reflect the views of NCSA or its board of directors. The podcast is for informational purposes only and does not offer any medical or legal advice.
Contact: info@ncsautism.org
