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.
Autism Diagnosis Levels
When Lucas was diagnosed, the DSM-4 (Diagnostic Statistical Manual Version 4) was used and it classified autistic disorder as a classic or as severe autism. Autism Spectrum Disorder also had Asperger’s, PDD-NOS, Retts syndrome and Childhood Disintegrative Disorder.
When practitioners went from DSM-4 to DSM-5 in 2013, that’s when everything collapsed into one diagnosis of Autism Spectrum Disorder and more mild forms of autism including Asperger’s Syndrome were eliminated. I did a video blog on this if you’re new to this topic.
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.”
Only 10% of people that have been diagnosed with autism spectrum disorder are actually competitively employed and happy with that employment.
Give Autism Employment Support
When it comes to employing adults with autism, Jill said that what we should be doing is giving support inside jobs that people with autism can do. “The vast majority of the population inherently lacks the ability to do this work. They lack the cognitive ability. They lack the functional ability. They have behaviors, they need supports. Somebody who is throwing a tantrum and kicking down the machinery at work is not going to be invited back.”
What Services Are Available to Adults with Autism?
I asked Jill how we can move forward. What small steps can we take to make this better for kids coming down the pike that are going to be adults with severe autism? “I think everything has to start with truth,” said Jill. “We have to be as honest as possible. Painting over reality – as we see all the time happening in the media, happening in the neurodiversity community – doesn’t help our population at all. All it does is further marginalize them and make them more invisible and make their needs less urgent.” She said we need to be more transparent about the increase in autism and to have more reports of functional levels in terms of the cost of autism to society. And then we need realistic policy. She says this includes autism insurance. “I usually talk about it this way. We have insurance, right? I have home. If my house burns down, I have home insurance [and] I’ll be able to rebuild. If I cross the street and get hit by a car, I have health insurance. I can go to the hospital and they can do whatever to save me.” But there is no autism insurance. While insurance does grant access to ABA, there is no “national system for thinking about how we spread the risk for the lifelong care for adults with developmental disabilities, especially autism.” I talk more about insurance and autism on the video podcast with Lori Unumb as well. This is a new problem that we haven’t had to think about before, said Jill. So we’re using outdated systems that can’t truly address the problem at hand. And every state handles things differently. Jill told me that what’s really needed is a national system like IDEA for education. “IDEA was a level playing field across all 50 states. This is the rule about how you deal with kids in need of special education. We don’t have that for adults. We don’t have that legislation that says this is the level playing field. This is the baseline in terms of how we provide long-term care for this growing population of adults with serious neurodevelopmental pathology.” If you want to watch the whole podcast episode, you can go to marybarbera.com/153. And if you’d like to learn more about joining our online course and community you can visit marybarbera.com/workshops/.
