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Tuesday, August 11, 2015

Young Adults with Autism

In The Politics of Autism, I write about the problems of young autistic adults.  Valerie Paradiz, the mother of a 25-year-old man with autism, writes at SFARI:
The need for these kinds of targeted programs and career services has grown enormously. Two decades ago, when Elijah received his diagnosis, just 4 in 10,000 children had an autism diagnosis. Today, according to the U.S. Centers for Disease Control and Prevention, the rate is roughly 1 in 68.
In April, the A.J. Drexel Autism Institute in Philadelphia published the first report documenting the effects of insufficient support for young people like Elijah. The report exposes a dramatic drop off in services, what it terms a “services cliff” that young adults experience as they transition from secondary education into the larger world.
The key findings of the 68-page report read like the story of Elijah’s life, validating what many families know is amiss. The findings also quantify the implications of systemically ineffective planning for the transition to adulthood and reveal the hardships young adults face as they make their first, fledgling attempts to negotiate life after school.
Like Elijah, roughly half of his peers are bullied in school. Only 58 percent had a transition plan in place by the federally mandated age of 16. (Even though I was working in the field, Elijah never had an adequate plan at any age from the public school.)
Approximately one in four young adults on the autism spectrum, my son included, receive no services that could help them become employed, continue their education or live independently. More than one-third are “disconnected during their early 20s,” the researchers found, meaning they never get a job or continue education after high school. Elijah experienced this same isolation in his early 20s.
The biggest deterrent to developing evidence-based programs for people with autism is the lack of available data. “Our situation is like driving a car through the fog with no dashboard,” says Paul Shattuck, director of the institute’s Life Course Outcomes Program.
Emphasis added:  the last point touches on a major theme of the book, the uncertainty surrounding nearly every aspect of the issue.