Dr. Mary Barbera discusses adult autism services and advocating for life-long supports with Jill Escher.
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Today we are talking all about adult autism services for individuals with severe autism. This is an excerpt from podcast episode 153 that I did with Jill Escher, who is the president of the National Council for Severe Autism. We talk about the challenges with helping adults with severe autism and some steps that we can take to improve the situation, not only for our adult kids, but also for the kids who will transition to adulthood in the years and decades to come.
This is a very important topic as the rate of autism continues to increase, from 1 in 500 in 1999 when my son Lucas was diagnosed to 1 in 54 two years ago to 1 in 44 just reported by the CDC in early December 2021. The number of adults with autism will be dramatically increasing in the future and this means the need for adult autism services will continue to explode at unprecedented rates.
When the DSM-5 came out, social media blew up. And adults with autism who were conversational and could self-advocate started advocating for themselves - as they should. But now the pendulum has swung to one direction where politicians and the media are heavily focused on the more mild end of the spectrum and affecting the care and services needed for those adults with severe autism. Some now say we shouldn't have places for them to go into pre-vocational programs (otherwise known as sheltered workshops) or we shouldn't have residential placements.
“Honestly, I think there's been an all out assault on the severe autism community,” Jill Escher told me. She said that disability rights advocates have a very rosy view of what autism actually is, and that there’s a “pervasive denialism” about the levels of disability in autism and what certain people’s lifespan needs will be.
“One example was sheltered workshops. The disability rights crusaders have very successfully been limiting access to non-competitive employment for people with severe disabilities. The idea is that people with disabilities shouldn't be paid less than people without disabilities. I'm all for somebody getting a competitive, integrated job, if they can. I'm all for supports for that person. But the fact of the matter is anybody with two eyes can see that that is not possible for probably the majority of people with autism. I mean, the data really shows that people with autism have incredibly low rates of employment.”
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Dr. Mary Barbera. I fell into the autism world as an autism mom in 1999 when her first-born son, Lucas, was diagnosed with autism. Since then, she became a Board-Certified Behavior Analyst and best-selling author of The Verbal Behavior Approach. Since 2015, she’s created 3 autism online courses based on applied behavior analysis for professionals and "gung-ho" parents. Whether you’re looking for autism parenting strategies, working with development delays in children, or in search of autism help for professionals, I can encourage you to subscribe to the channel and join me on my journey. I’ll be providing weekly autism resources that you don’t want to miss.
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