What happens to people with autism when they age out of school?
It’s early in the morning. Josh Stern waits outside his house in Wilmette for a Pace van he calls every as his ride to work. The van arrives, Josh kisses his mom goodbye and pays his fare.
Stern is 25. He was diagnosed with autism when he was two. He has a photographic memory that allows him to sort through loan paperwork at great speed.
He takes one quick glance at the numbers, hits the calculator, files the forms in order and it’s ready to go. It’s a skill his co-worker Ricardo Ramos says he admires.
“It’s like a computer almost,” Ramos said. “He literally just keeps on doing it and you know he doesn’t miss a detail. That’s what’s great about him, once you train him, he’ll just do it.”
Illinois has more than 19,000 minors who have autism. And that’s just what the schools are identifying. When these kids’ services expire from the state, they face the same choice as most young adults: school or work? But the transition to either of those worlds can be difficult depending on the disability.
The day the bus doesn't come
Josh’s mom Linda Stern is all too familiar with what many parents refer to as “the day the bus doesn’t come.”
“They put so much effort and wonderful work into the school experience and for most people all that work all that effort all that wonderful enriching experience just disappears,” Stern said. “They don’t even understand it, it’s like how come I’m not going to school and I’m sitting at home with mom watching TV all day long.”
The transitional period out of the school system in Illinois starts at age 14 ½. During that time, families work with the school to create post graduation goals based on the child’s interests and skills.
Though federal law requires that every child receive a transition plan, parents like Bill Casey feel the system can leave parents frustrated and confused.
“Parents don’t understand what’s offered to them by the community service organizations,” Casey said. “You really have to start digging to figure what’s available. You really need friends like Julie and Michael Tracy to help guide you in some ways to find the right avenues.”
Julie and Michael Tracy run an urban farm that caters to young adults with autism. The farm harvests everything from collard greens to fresh tomatoes, and all of that goes to food pantries across the city.
“We’re teaching them jobs skills, interviewing and resume, working with other people,” said Gwenne Godwin, farm manager at the Growing Solutions Farm. “We just happen to be using the medium of agriculture to do it in so that they can get a job in this industry or in any industry because they’ve learned those vocational skills.”
Casey’s son Dan works at the farm. He feels it offers Dan an experience he didn’t have in a school setting.
“You know kids with autism don’t have all the victories that we all have growing up,” Casey said. “The baseball, the football, the debates and the like, this is something for them.”
We asked the Illinois Division of Developmental Disabilities for response to Bill Casey’s claims about these programs, but they didn’t provide one.
Now, the National Garden Bureau is behind the program and these young workers are able for the first time to take home a paycheck. The non-profit has generated nearly $30,000 in donations and continues to raise funds for the farm.
Opportunities in higher education
More than half of people with autism struggle to find work and often don’t seek higher education opportunities.
For those who do, they can turn to Jennifer Gorski. Gorski runs the Autism Clinic and TAP Training Center at University of Illinois, Chicago.
“We are hearing about these needs from people in our community quite a bit,” Gorski said. “We formed the ASPiE group which is a support group geared toward supporting college students that are on the spectrum.”
ASPiE (Adults Spectrum People in Education) meet once a week to have frank conversations that every college kid has such as, what’s in store after college, questions about careers and managing course load.
Since social interactions can be a big obstacle for individuals with autism, ASPiE members like Jasmin Khoshnood say it helps them interact with their peers.
“It’s been really helpful to me in terms what do with with college and how to add to professional world,” said Khoshnood. “Meeting ASPiE college students has been good for me as well having a peer group that is more like me I can tell things that I couldn't tell to non-autistic, neuro-typical people.”
The program at UIC Khoshnood participates in is not the norm across the state.
United Cerebral Palsy ranks Illinois at the bottom for the way it handles its services for people with intellectual and developmental disabilities.
“My perspective is that it all comes down to funding,” said Gorski from UIC’s Autism Clinic and TAP Training Center. “I think that the adults are a little bit behind in terms of the allocation of resources.”
Come January, that funding could get even tighter when the current income tax hike rolls back.
Kevin Casey from Illinois’ Division of Developmental Disabilities said in a statement, “the loss of any funding will limit and delay our ability to provide services.”
Governor-elect Bruce Rauner has said he wants to roll back the income tax hike.
What that means for the autism community remains to be seen.