Autism Confidential

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 is...

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...

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 pr...

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 neuro...

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...

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, an...

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...

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 Achie...

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 benefi...

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 co...

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,...

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 c...

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 discus...

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...

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...

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 contex...

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...

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,...

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 be...

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 offeri...

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, dedicate...

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 B...

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)...

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 pa...

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'...