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Adult Autism Services: Advocating for Life-Long Support

Dr. Mary Barbera

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.

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.

Lucas Barbera Pre Vocational Program
Lucas Barbera folding boxes at a pre-vocational program (formerly known as a sheltered workshop)

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.”

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Lucas and Mary Barbera Adult Autism Services
Mary Barbera with her son Lucas who is a young adult with severe autism and will require 24/7 care and supervision for life.
To even volunteer somewhere, Lucas needs a one-to-one, highly trained support person with him. And then he can do very well. But if he actually got a part-time job, then this highly trained person could actually not accompany him even short-term or long-term because that’s a different funding source. And then we’d have to bring in even more supports for him. As the rate of autism goes up, there’s going to be a lot more adults like Lucas coming down the pike. I’ve heard it said that a tsunami is coming.

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/.

Frequently Asked Questions:

How many children have autism in the US?

On December 1, 2021, the CDC reported the rate of autism in 8-year-olds to be 1 in 44. This is a 22% increase from just two years ago when the rate of autism was 1 in 54 and a 1000% increase from when Lucas was diagnosed with autism in 1999 when the rate was 1 in 500. There are four times more boys than girls diagnosed with autism.

What is the DSM-5?

The Diagnostic Statistical Manual of Mental Disorders “defines and classifies mental disorders in order to improve diagnoses, treatment, and research,” according to the American Psychiatric Association. The current version is version 5, which is why we refer to it as the DSM-5. Back when Lucas was first diagnosed with autism we had the DSM-4 which included diagnoses like PDD-NOS and Aspergers that are no longer considered as part of the autism diagnosis.

What is Severe Autism?

Children and adults with severe autism usually have very impaired communication and social skills. They are either non verbal or minimally verbal and have a hard time expressing their wants and needs.

They may not be safe when left alone or in the community and have a hard time with taking care of their own physical needs like toileting and dressing. Most children with severe autism (who have language and self-care deficits) are also cognitively impaired with IQs under 70. 

A lot of times kids with severe autism also have problem behaviors such as self-injurious behavior, repetitive behaviors, and aggression.

If your toddler is showing signs of autism or if your child has been diagnosed with Level 1, 2 or 3 (severe) autism, you can learn proven strategies to increase talking and decrease problem behaviors. Sign up for a free workshop today at marybarbera.com/workshop to get started.

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