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.

National Council on Severe Autism Webinar, May 15, 2024

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

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.

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).

National Council on Severe Autism Webinar, February 15, 2024, featuring:

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

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

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 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

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