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There’s so much talk of the origins of autism these days, it’s hard not to think of it as a childhood disorder. But we tend to forget that there is a fast growing number of adults living with autism in the country today. According to Autism Speaks, in the next decade alone, 500,000 children with autism will come of age. So we have to wonder, what lies in store for the young adults who will soon age out of the special education system? What kind of lives will they lead? Has public awareness of the disorder led to any real change?
Rough estimates suggest that there are currently between one and 1.5 million autistic adults in the country today. But because tracking the disorder is relatively recent, there aren’t a lot of good statistics on how the work and living situations of people on the autism spectrum have changed over the years.
Given the fact that autism is a “spectrum” disorder, it’s not surprising that people with autism live lives that are incredibly varied. Jim Ball of the Autism Society says that a majority of young adults and adults with autism are living at home with their parents. Success in group homes has not been so good, Ball says, since the facilities tend to be expensive and can pose a number of social challenges for patients. On the other hand, some autistic people are getting married and having kids, says Peter Bell of Autism Speaks. (And, he adds, in rare cases, some may not even be aware they have autism until they have a child diagnosed with the disorder, and their own status unfolds.)
About 56% of people with autism graduate from high school, according to Ball, but the data on how many graduate from college is less clear. One study last year looked at a group of young adults over the long term to see what they did after high school. About 18% were employed, and 14% were in college. “The vast majority were in day services, and 12% had no activities at all,” says Bell.
The good news is that many of the participants in the study were born in the 1980s, and things have shifted since then. “There will be a change happening for kids born in the ‘90s and 2000s,” Bell adds. “You’ll have increasingly better outcomes because they are the ones experiencing the benefit of early diagnosis, early intervention, and newer kinds of treatments. And these are often covered by insurance, so more kids are getting them. This next generation will be able to lead better, more independent lives. A good percentage will be on to post-secondary education – years ago, they said this would never happen.”
Part of the problem is that most educational and vocational programs for the under-21 group are state-run. And since these agencies typically handle all sorts of developmental disabilities, they may not have the best tools or resources to handle the number of people with autism coming to them these days. Bell says, “while autism is a developmental disability, many are realizing that adults with autism have different needs than their clients with other developmental disabilities. The other thing we frequently hear is that there are not enough vocational rehabilitation professionals to handle the wave of teens with autism that are entering adulthood.”
Once in the job market, many autistic people find a similarly difficult environment. Ball says that a lot of times “our people are actually underemployed, either because the jobs themselves are aren’t challenging enough, and their social skills may make it difficult. If a person can’t tell when coworkers are sarcastic or upset, or take criticism in a job, this can pose a problem. On the other hand, our kids are highly capable, so they often want to do more.” The unemployment rate for autistic people seems to be about 66%, according to data from 2009, compared to about 9% for the general population. Some estimates, like Bell’s, are even higher: 80-85% unemployment.
But things are changing – at least a little. The Autism Society has partnered with organizations like AMC and Paperworks Studio in Traverse City, MI. Paperworks, owned by Goodwill Industries, employs people with disabilities (about 20% are autistic) to make greeting cards by hand. Other companies, like Aspiritech, a software testing company outside Chicago with which Autism Speaks is affiliated, employs people with Asperger and high-functioning autism exclusively. Bell says that testing software can be a repetitive job, but autistic people often enjoy and excel at it.
And some families are taking matters into their own hands. This past summer, Wendy Kaplan has started a vegetable farm in Oyster Bay, NY, cultivated by people with autism. The enterprise was originally sparked by her autistic daughter’s wish to work on a farm, which the Long-Island-born-and-bred Kaplan says came as a bit of a surprise. But the results have been incredible. “People always think they’re just doing something good by buying products from people with disabilities, but the fact that our customers said the food tasted much better than grocery store food was wonderful to hear.”
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