But for Dana—and her parents, Beth, who works in a doctor’s office, and Rob, a business owner—that prospect is terrifying. “I want to celebrate,” Beth says, “but what I feel is a knife in my heart.”
That’s because Dana is autistic. She can’t hold a conversation, make eye contact, verbalize her thoughts, cross the street alone, or control herself when she’s upset. Starting when she was 4—thanks to a federal law that guarantees disabled children an appropriate education—she has spent her weekdays at Ivymount, a private school for special-needs students that she loves and that has been paid for by the state and county. But because Dana turns 21 this week, that support will dry up when the school year ends, leaving her parents to agonize about the quality of life their daughter is facing.
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In the next 15 years, an estimated 500,000 autistic children like Dana will graduate out of school systems in the U.S. and into the unknown. Meaningful programs for them are scarce, and funding even scarcer. “We’re at the moment of truth to address the numbers of children aging into adulthood,” says autism activist Linda Walder Fiddle. “Their lives are hanging over a cliff, and we must not let them fall.”
It’s like a splash of cold water in your face,” says Robin Heyd of New Jersey, whose son Eric is 20. “You’re devastated twice: first, with the diagnosis; then, years later, when you realize that after all the interventions, you still have a kid with autism and you have to plan his future.”
That planning process—which begins during a child’s teenage years—is called “transition,” but many parents can’t tell what exactly they’re transitioning to. Only about 3,500 programs are available nationwide for autistic adults, compared with 14,400 for autistic kids. Some are little more than day care, while -vocational programs may consist of participants working for a company in isolation, doing piecework like shredding paper. “It’s not what we want for our kids,” says Jeff Sell, a vice president of the Autism Society and the father of autistic twins. “The situation in many places is sad, disheartening, and disgusting.”
Of course, decent programs for autistic adults do exist, but they usually have long waiting lists, says Larry Lam, a New Jersey father whose autistic son, Jonathan, is 21. “Parents throw up their hands, and their kid sits at home watching TV.”
The Eismans considered 10 vocational-training programs for Dana. Their top choice, Community Services for Autistic Adults and Children (CSAAC), is the only one they knew of in their area designed for individuals with autism; the rest serve a range of developmentally disabled adults. But autism is different from many disorders with which it is frequently lumped together: Though 44% of autistic people have mild to moderate mental retardation, some have none at all, according to National Core Indicators, which collects data on the disabled. Often, autistic adults’ capabilities are masked by a lack of social skills or an inability to articulate ideas.
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That was the case with Dana—until a few years ago, when she went to a program in Austin, Tex., and learned to communicate by typing and pointing to letters on a board. One of the first things she typed was: “I don’t want to leave Austin because no one is going to think I’m smart.” And: “I’m so uncomfortable inside my body. I don’t know how to stop myself.”
The Eismans were proud—and stunned. Says Rob: “For 15 years, we thought Dana had the mind of a 4-year-old. What kind of parents are we that we didn’t realize this wasn’t true?”
Where are the jobs?
Every week, Dana puts on a blue employee T-shirt to work at a pet store. Shadowed by a job coach, she unwraps boxes, shelves products, and cleans cages meticulously and methodically. When a customer asks for assistance, the coach prompts Dana to reply, “Let me take you to someone who can help.”
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Dana is not paid for her work, which is part of Ivymount’s vocational-training program. Indeed, an autistic adult’s prospects of landing a paying job are bleak: Only 20% are employed, one study estimates, and at least 60% of those with jobs are thought to be underemployed or paid below-market wages.
In the workplace, many autistic adults need support, like job coaches and aides, which autistic children are legally entitled to. “The burden of responsibility shifts after they age out of the system; once they’re adults, they must ask their employers or vocational programs for such services,” says Ari Ne’eman, a presidential appointee to the National Council on Disability. Ne’eman himself has Asperger’s, a form of autism. “Many of them have not been taught the skills to do that.”
