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Who Will Care for Adults With Autism?

Limited resources and varying needs present a daunting challenge

WebMD News from HealthDay

By Serena Gordon

HealthDay Reporter

FRIDAY, Aug. 23 (HealthDay News) -- The vast majority of youngsters with autism will grow up to be adults with autism.

An estimated one of every 88 children in the United States has an autism spectrum disorder, according to the U.S. Centers for Disease Control and Prevention. That means that 45,000 to 50,000 kids with autism turn 18 each year, says autism researcher Paul Shattuck, from Washington University in St. Louis.

"This is an impending health care or community care crisis," said Dr. Joseph Cubells, director of medical and adult services at the Emory Autism Center at Emory University in Atlanta. "The services that are available vary from state to state, but often the resources just aren't there."

Public schools are required to provide services to people with an autism spectrum disorder until they reach age 22, according to the National Alliance on Mental Illness. After that, the responsibility shifts to the person with autism and family members to find educational or employment opportunities and appropriate living arrangements.

But experts note that a shortage of necessary programs for adults with autism already exists and is likely to worsen as the increasing number of children who are being diagnosed with autism spectrum disorders grow into adults.

One of the biggest challenges in providing services to people with an autism spectrum disorder is that the needs change from person to person.

"We say autism as if it's a single thing, much like we say cancer," Cubells said. "But, within the general category of things we call cancer are brain tumors, lung tumors, pancreatic tumors, and each requires different treatments. Autism is very individual. It varies from one extreme where someone needs custodial care for their entire life to the other extreme where someone is a highly functional, successful person who may be regarded as being a little quirky," he explained.

"There are some common themes," Cubells said, "but there's really nothing that applies to every single person."

Take higher education, for instance. An older child who's on the higher-functioning end of the spectrum may be able to go to college, but that presents challenges as well.

"There's often a substantial mismatch between verbal skills and performance skills," Cubells said. "You can be highly intelligent and able to do complex math and abstract reasoning, but you don't know how to ask someone out for coffee. Having to make friends, schedule meals, and get to class without help can be like hitting a brick wall for a lot of people on the spectrum. I often tell people with Asperger's that they have to learn in words what most people learn intuitively."

He said a college's disability services office could be helpful in some cases, as could peer mentorship programs that pair someone with Asperger syndrome, for instance, with someone of the same age who's learned about the condition.

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