Autism Confidential

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:

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.

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

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.

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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.

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

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:

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.

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.

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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.

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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.

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.

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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). 

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

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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

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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

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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.

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

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 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?

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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?

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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.

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.

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News story about Michelle and her son:

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.

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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.

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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.

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.

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!

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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

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.”

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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.

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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.

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