Study: Adults with autism often have little opportunity

Roughly one in 10 young adults on the autism spectrum apparently has nothing to do all day, and many more have very limited opportunities, according to a new study.

They aren't in school, they aren't working and they aren't receiving any job training or government-funded services, said Paul Shattuck, an associate professor at the A.J. Drexel Autism Institute at Drexel University in Philadelphia, who helped lead a new study on young adults with autism.

"Something is pretty broken," Shattuck said.

For years, interest in autism has been growing along with autism rates. The condition now affects one child in 68. Most of the emphasis, though, has been on young children on the autism spectrum.

"We've been so focused on that end of the lifespan that it's almost as if we forgot that these children were going to become adults and now we're at this crisis point in the system," said Anne Roux, a research scientist at Drexel, who helped lead the study.

Researchers still don't have a good understanding of what autism looks like in adulthood, Roux said. Autism is defined by social awkwardness, repetitive behavior and communication challenges. There's so little known, she said, that it's not even clear how many young adults will need services – which is what motivated her current research.

"We literally have almost no data about anyone beyond age 25," or how needs will change as they age, she said.

About half the young adults on the spectrum have severe impairments in conversational skills and functional abilities, according to the research, suggesting that at least that many will continue to need services into adulthood.

But Noah Britton, a Boston psychology professor and autism job counselor, said even people on the spectrum who are fully capable of working need help negotiating the job market.

Britton, who is on the spectrum himself, said he sees clients all the time who are intellectually capable of work but haven't learned the skills they would need to hold down a job – or even land one in the first place.

Job interviews are terrible for most people on the spectrum because of their social awkwardness, said Britton, also a member of a four-man comedy troupe called Asperger's Are Us. "Out of all the ways neurotypicals control the world, I think this is the biggest," Britton said, referring to non-autistic people as neurotypicals.

There should be hope even for young people who look on paper like they're doing nothing, said Lydia Wayman, 27, of Pittsburgh. At 21, a doctor told Wayman she would never hold a job, despite her nearly 4.0 grade-point average in college. Now, with a master's degree in writing, she works part-time for an autism advocacy group, managing the website and mentoring younger women. She has regular editing assignments, and she's co-writing a novel that includes a character on the spectrum.

"It's not really for anybody else to decide the value of my experience," Wayman said.