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.”
I have written a book on the politics of autism policy. Building on this research, this blog offers insights, analysis, and facts about recent events. If you have advice, tips, or comments, please get in touch with me at jpitney@cmc.edu
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Sunday, April 3, 2011
Parade Magazine Highlights Adults with Autism
Previous posts (see, for instance, 2/18/11 and 3/17/11 ) have dealt with the largely-neglected issue of autistic adults. Parade today raises the salience of the topic by profiling Dana Eisman, a 20-year-old ASD woman in Potomac, Maryland: