Entering Adulthood With Autism

Falling off the ‘services cliff’ can have dire consequences for young adults with the developmental disorder.

According to koodakpress، Rod Sievert is worried about what his son Kendall will do after high school.

The difference is that Kendall has autism, which makes social interaction and communication more difficult for him even though his intelligence level is on par with his peers. In spite of those challenges, he spends part of his day with the general population of his public high school in Las Vegas, his aggressive bursts are mostly under control and he’s much more verbal than he was as a child.

His son is a hard worker, too, Sievert says. And with a keen interest in nature and science, he admires the famed physicist and author Stephen Hawking, who died in March.

Still, Kendall’s parents, who both work in education, are not sure what’s next for him: Should they push him toward college, or should he pursue a vocational route? Should they delay those decisions and keep him in school another year or two, or should he graduate with his class next spring, joining the roughly 50,000 young adults with autism who finish high school each year?

It’s been “overwhelming” sorting out his son’s next steps, Sievert says, not to mention the tangled web of guardianship, Social Security income and other legal issues Kendall’s parents will face when he turns 18. And while Sievert says the family has a “very good working relationship” with Kendall’s school, it’s only a matter of time before he will have to move on.

“It’s a deciding point, so basically it’s a balancing act of respecting that young adult, but the happiness part is really hitting me hard,” Sievert says. “I don’t want to say, ‘Go to college, Kendall, because you’re so, so smart,’ but then it’s hard for him and he’s not happy studying because it’s too structured.”

Across the country, thousands of parents of autistic students like Kendall grapple with similar concerns every year. The daily support provided through public school systems ends with graduation, and many young adults who age out of high school programs and fall off the so-called services cliff can struggle to transition successfully into adulthood. A 2015 study of federally funded survey data found that only about 36 percent of autistic young adults attended college or vocational schools, and 58 percent held a paying job between high school and their early 20s – a rate reportedly much lower than that of their peers with other kinds of disabilities.

“When [students with autism] leave the school system they may still need support, but those supports are not necessarily readily available, because we don’t have the same kind of system in place for adults,” says Lisa Goring, who leads family services initiatives for Autism Speaks, one of the largest autism advocacy groups in the U.S. “We know that everyone is a lifelong learner, yet there are not necessarily enough systems in place to keep that learning going.”

Autism spectrum disorder affects about 1 in 68 children, according to the Centers for Disease Control and Prevention. And its impact reverberates across the social services, health care and education sectors: Direct and indirect services, as well as productivity costs, were pegged at a price tag of up to $367 billion for 2015, according to a study published in the Journal of Autism and Developmental Disorders.

Recent decades have seen a surge of support and visibility around services for children with autism, due in part to better diagnosis methods. Emphasis has been put on the importance of early detection and prevention, and the federal government requires public schools to provide educational services for students with disabilities until they graduate or turn 21.

But support is not guaranteed after that, contributing to the poor educational and vocational outcomes, which vary greatly depending on the state and even the county people live in, says Paul Shattuck, who directs the Life Course Outcomes Program at the A.J. Drexel Autism Institute at Drexel University. He likens the institute and its research efforts to “the Census Bureau of the autism world.”

Part of the geographic variation is because states have different eligibility requirements for services – such as supported employment or housing – that are often focused on intellectual disability or mental health, but not autism specifically. People with autism tend to “fall between the cracks,” Shattuck says, leaving many young adults and their parents struggling to navigate the complicated network of programs available as they leave the school system.

And as service-sector jobs have overtaken the U.S. economy in recent decades, it’s become increasingly important to provide supports to prevent autistic adults from becoming even more marginalized, he says.

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