A generation of autistic children have grown and entered adult life, but without the support they got as kids, what will their futures hold?
Inside the warehouse of Hopewell Valley Vineyards in Pennington, NJ, Tyler Bell stands hunched over a box, expertly working a glue gun as he seals the flaps shut. Tyler is twenty-two. He likes working out at the gym, Harley Davidson motorcycles, and hanging out with his friend Kevin.
Ask him about his friend Kevin, and Tyler will reach for one of several laminated index cards he keeps hooked to his belt loop.
“Can I tell you about my friend Kevin?” Tyler reads, haultingly. “Kevin is my new friend. He lives in Robbinsville. We go bowling together on Mondays. He is a cool guy.”
Tyler has autism. He doesn’t speak more than a word or two unless he’s reading off one of the “chat cards” he carries around to practice having conversations. He moves with a shuffling walk and is prone to staying still for long periods of time.
And yet Tyler is able to work five hours a week gluing boxes shut for the winery. He gets paid 25 cents a box, but it is a very slow process.
Tyler and another autistic 20-something, David Giardino, first worked together to learn the task. One folded the box and held the flaps; the other operated the glue gun.
Most employers wouldn’t have the patience for this, and that’s becoming an important issue for the autism community. As children with autism grow into young adults with autism they are having to deal with all the same challenges their developmentally normal peers face, including finding a job, making friends, and living independently. And while it’s rocky terrain for any young person to navigate, for young adults with autism there are few places to turn for help.
“The bottom line is we don’t have a well-developed evidence base about what works for whom once people enter adulthood,” says Paul Shattuck, director of the Life Course Outcomes Research Program at the A.J. Drexel Autism Institute in Philadelphia.
The majority of the autism research being done right now is focused on autism in children, which, Shattuck explains, has to do with advances in the fields of neuroscience and genetics that happened in the 1990s.
“Parents with young children with autism were looking at their young child’s diagnosis and saying, ‘Hey, we want the benefit of this science also. Our kids are sick, they have a neurological problem, and there’s some kind of biological basis,'” said Shattuck. “There was a kind of ‘me too’ energy.”
The result was 20 years of research into the origin and development of autism in children. But now that first generation of kids with autism is all grown up, and Shattuck is one of the few researchers asking: What happens now?
“We’re focusing more attention on things like: Do people have a job? Do people have friends? Are they living in a supportive community? What kinds of supports and services do they have access to?” said Shattuck.
Shattuck already has the answers to some of these questions. His research indicates that in the years after high school, 50 percent of young people on the autism spectrum have no job, no vocational training, and no college preparation. That’s twice the rate of young adults with an intellectual disability or a severe mental illness. It’s why some parents of autistic young adults call the years after high school “falling off a cliff.”
Fortunately Tyler’s mom Liz saw that cliff coming and was able to do something about it.
“We pulled him out his junior year in high school to try and start getting him immersed in what life is like in the real world,” said Liz. “As opposed to learning high school we wanted him to learn life.”
Tyler’s parents spent the next four years teaching Tyler things like how to order food at a restaurant or use the ATM the best way they knew how—with lots of repetition and practice.
Today researchers know exactly what types of therapies can help a child with autism in the classroom. But Shattuck says these kinds of “best practice” approaches won’t work for young adults trying to answer these big questions about early adulthood.
“It makes sense with very young children to think about approaches to intervention where you’re trying to create sort of a standardized approach,” said Shattuck. “I don’t have much belief in the idea that we’re going to find these sorts of perfectible approaches to teach things like getting a job.”
Instead Shattuck says the future will look different for each young adult on the autism spectrum. And so will the way to get there.
Since pulling him out of school, Liz has been in charge of Tyler’s his day-to-day activities. She is his chauffeur and his gym buddy. She hangs around the winery while Tyler works just to keep an eye on him. She has accepted that her son will need constant supervision, even as an adult.
“The freedoms that come with your kids reaching a certain age don’t happen for us,” said Liz.
Since turning 21, Tyler gets funding from the New Jersey Department of Developmental Disabilities and Medicaid. The DDD provides families with a budget of anywhere between $16,000 and $30,000 a year to pay for the services these young adults need.
Tyler’s dad, Peter Bell, just wants his son to live as normal a life as possible.
“Quite honestly, if he could pay taxes instead of being the beneficiary of tax dollars, that would be the ideal situation,” said Peter. “We’re trying to figure out what is his niche in life? What is he good at? What does he like to do? What is going to be meaningful?”
But for many families that’s easier said than done.
Shepherding their autistic child into adulthood can be overwhelming for parents. While their child is in school, parents work with a built-in support team of teachers and specialists who track and monitor their child’s progress.
But when a student becomes an adult, it’s the parents who take over managing their child’s autism. This can be a big change for some parents, especially those who were told to stay out of the way while their child was in school.
As Tyler’s mom and full-time chaperone, Liz knows what this parental helplessness feels like. But being in charge of Tyler’s care has also helped Liz see that he is capable of doing things other adults do.
“He pushes me out of the way when I start to unpack the dishwasher because he knows how to do it and he wants to do it,” said Liz. “So I think when the world is difficult for you that when you are taught something to a level that you feel some sense of success and pride that it becomes something that you want to do.”
And as for figuring out what type of work Tyler might like to do, his parents take a cue from his smile.
Back in the warehouse, Liz asks Tyler how he feels about gluing boxes.
“Are you proud?” asks Liz. With a little giggle Tyler is quick to respond.
“Yeah,” he says.