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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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....

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....

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...

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,...