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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Episode #058 - Crisis Care for Severe and Profound Autism (01:18:33)
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
Episode #057 - Standing Up for Severe Autism on Social Media: Eileen Lamb (01:13:01)
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
Episode #056 - Sounding Off About Autism Month (00:59:41)
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
Episode #055 - Karen Fessel: Insurance Coverage for Severe Autism (01:17:50)
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
Episode #054 - Discrimination by Design: How Policies Threaten the Most Severely Disabled (01:23:55)
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
Episode #053 - Seizures and Epilepsy in Severe and Profound Autism (01:22:24)
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
Episode #052 - National Council on Severe Autism Webinar, February 15, 2024 (01:41:27)
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 2,000-5,500%
• The evidence for a true increase in other high-income countries (and lower rates in lower-income countries)
• The lack of evidence for commensurate autism rates in older birth cohorts
• The flaws in the arguments that certain studies (eg, Hansen or Brugha) show there has been no increase in autism
• Autism rates are still increasing, and no one understands why
• The tired, unsupported rationalizations that the autism increase stems from awareness and diagnostic shifts
• An emerging hypothesis that could help explain at least part of the surge, and the 6 key findings from autism research
• The reasons for widespread denial of the increase in autism
Links:
JillEscher.com
EscherFund.org
Autism Epidemic, Autism Research, Autism Genetics, Autism Epigenetics, CDC ADDM Network, Developmental Disabilities, Aspergers, Autistic Disorder, Gene-Environment Interaction, Heritable Impacts of General Anesthesia, Sevoflurane
Episode #051 - The Reauthorization of the Autism CARES Act (01:18:58)
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
Link:NCSA Letter re CARES Act Reauthorization. Includes link to ASF white paper: https://www.ncsautism.org/blog//ncsa-submits-concerns-about-the-autism-cares-act-reauthorization-now-is-the-time-for-bold-action
Episode #050 - Girl Storm: A Stunning New Memoir of Profound Autism (00:45:08)
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.
Links:
Girl Storm on Amazon: https://a.co/d/cQpq5bk
Jill Escher's review of Girl Storm: https://www.ncsautism.org/blog//lost-in-a-bermuda-triangle-of-profound-autism
Episode #049 - A Musical Mind: The Story of Adam Mandela Walden, a Cellist with Severe Autism (00:49:43)
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.
Links:Fantastic Cellist’s Deep Musical Connectionhttps://www.daily-joy.org/video/fantastic-cellists-deep-musical-connection/Cellist with autism finds his purpose, voice in musichttps://spectrumnews1.com/ca/la-east/arts/2021/12/21/cellist-with-autism-finds-his-purpose-and-his-voice-in-music
There are a lot of other videos and articles to see including Adam’s interview in “From The Top” if you just google "Adam Mandela Walden"https://youtu.be/mLoGBJRxsZ4?si=oudW4TaShenEOq8h
Episode #048 - Richard Edley, The Need for Reality-Based Programs for Adults with Severe Autism (00:46:34)
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
Link:RCPA: https://www.paproviders.org
Episode #047 - Open the Floodgates! Mary Ogle of A New Leaf in Oklahoma (00:49:09)
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 retentionWe must "open the floodgates" to vastly more services and housing to serve the need. Amen!Link:https://www.anewleaf.org
Episode #046 - The Benefits of Residential Communities and the Need for Choice: Molly Nocon, CEO of Noah Homes (00:42:07)
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.orgOpportunity Village: http://opportunityvillage.orgTogether for Choice: http://togetherforchoice.org
Episode #045 - How to Be an Autism Advocate in Your State (01:39:40)
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 #044 - Title: Autism Research Roundup, with Dr. Alycia Halladay (01:09:40)
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:
The contributions of rare inherited and polygenic risk to ASD in multiplex families https://www.pnas.org/doi/abs/10.1073/pnas.2215632120
The earlier the better: An RCT of treatment timing effects for toddlers on the autism spectrum https://journals.sagepub.com/doi/full/10.1177/13623613231159153
Building Community and Identity Online: A Content Analysis of Highly Viewed #Autism TikTok Videos https://www.liebertpub.com/doi/abs/10.1089/aut.2023.0019
ASF Podcast - Podcast: Tik-Tok for autism information? Nope https://autismsciencefoundation.org/resources/podcast-tik-tok-for-autism-information-nope/
Meet Alycia: https://autismsciencefoundation.org/teams/dr-alycia-halladay/
Episode #043 - Battling the Vaccine-Autism Myth, with Paul Offit, MD (00:35:33)
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 diseasesThis podcast is sponsored by:National Council on Severe Autism NCSAutism.orgAutism Confidential podcast AutismConfidential.org
Episode #042: Jackie Ceonzo: A Hero Serving Severe Autism in NYC (00:44:36)
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!Links:SNACK* NYC: https://www.snacknyc.comShop Cup of Joe Coffee and other items: https://shop.snacknyc.com
Episode # 041 - Jill Gets Deluged by Questions (00:32:44)
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.
Read The Free Press article here: https://www.thefp.com/p/the-autism-surge-lies-conspiracies
Episode #040 - Susan Goldstein: A Champion for Autism in Florida (00:42:39)
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 #039 - Sia's' "Autism" and What Does "Autism" Mean Anyway? A Double-Header (00:55:28)
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.
Links:
Jill Escher: The Sia Shaming Spectacle Is a Tragedy for the Arts and the Autism Community https://www.ncsautism.org/blog//sia-shaming
Jill Escher: Stop Hating on Maddie Ziegler: She Was Magnificent in Sia’s “Music”https://www.ncsautism.org/blog//stop-hating-on-maddie-ziegler-she-was-magnificent-in-sias-music
Lee Wachtel: In Defense of Profound Autismhttps://www.youtube.com/watch?v=284K2by1FO4
Episode #038 - Dental Care for Patients with Autism, with Dr. Allen Wong, Part 2 (00:33:39)
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 Analysishttps://ncd.gov/publications/2022/medicaid-oral-health-coverage-adults-IDD
Episode #037 - Dental Care for Patients with Autism, with Dr. Allen Wong, Part 1 (00:35:23)
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. Dr. Wong discusses the following with host Jill Escher:
• Recent updates to the dentistry school curriculum that will expand clinical care for patients with disabilities
• The importance of prevention, including daily care, sealants, flouride varnish, x-ray alternatives
• Rinsing the mouth to remove acidic food and drink, and stay hydrated
• How meds can cause dry mouth, increasing risks for tooth decay
• Benefits of telemedicine in special needs dentistry
• An AI toothbrush
• A magic bullet to reduce impact of cavities: SDFIn Part 2 we will address issues around access, insurance and anesthesia
Episode #036 - Traveling With Autism: Lara Sandora, Advocate, and Pernell Wint, Beaches Resorts (00:57:19)
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.
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 #035 - The HCBS Settings Rule, Part 2 with Melissa Harris, CMS (00:46:21)
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 #034 - Medicaid Funding for Autism Services, Part 1 with Melissa Harris, CMS (00:41:46)
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.
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