Do job programs for adults with autism work?

Programs are out there to help young adults with autism find and keep a job. But no one yet knows whether they work, according to a study published Monday.

Combing the medical literature for evidence on the question, researchers were able to find only five studies. All were generally low-quality, the team reports in the journal Pediatrics.

“We did identify some small studies with promising results,” said lead researcher Julie Lounds Taylor, an assistant professor of pediatrics and special education at Vanderbilt University in Nashville, Tennessee.

But the studies were not well-designed enough to draw conclusions, according to Taylor.

“Even though there are vocational services out there, they haven’t been rigorously studied,” Taylor said.

She stressed, though, that the findings do not mean the programs don’t work – just that better studies are needed.

An autism researcher not involved in the new report agreed.

“I think this is more a critique of the research community, not the programs themselves,” said Paul Shattuck, an assistant professor at Washington University in St. Louis.

Why have there been so few studies, and no high-quality ones?

Both Taylor and Shattuck said that in autism, the research focus has historically been on children.

“But children with autism grow up,” Taylor pointed out. “We have startlingly little evidence on how to help adults.”

In the U.S., it’s estimated that about one in 88 children has an autism spectrum disorder, or ASD.

That’s up 78 percent from a decade ago – which health officials attribute to better diagnosis as well as broader definitions of what constitutes an ASD.

ASDs are a group of developmental brain disorders that hinder a person’s ability to communicate and interact socially – ranging from the severe cases of “classic” autism to the relatively mild form called Asperger’s syndrome.

The five studies in the new review came from the U.S., UK, Spain and Germany. The U.S. study was the largest, looking at 1,700 autistic adults nationwide who took part in “vocational rehabilitation” services.

Most U.S. states have such services, which help people with disabilities – physical or mental – find a job and stay employed. That may include so-called on-the-job supports, when the agency works with an employer to get disabled workers the kind of training, accommodations or other forms of support they need.

Private organizations also offer people with autism help with finding and keeping a job. But the extent of what’s available to families varies widely depending on where they live, Taylor said.

The U.S. study in her review found that autistic adults who took part in vocational rehab were as successful in finding a job as people with other developmental disabilities.

Overall, 42 percent ended up “competitively” employed, compared with 39 percent of people with mental retardation, for example.

The other studies were smaller. A UK study of 30 young adults in a work program found that 19 got paying jobs, versus five of 20 young people not in the program. Of the 19 in the program with jobs, 13 were still employed seven to eight years later.

But all of the studies had limits, Taylor’s team says. None of them, for instance, randomly assigned people to a vocational program or a comparison group; that type of study is considered the “gold standard” in proving that an intervention works.

Furthermore, a job program that helps one person with an ASD may not work for another person, Taylor pointed out.

“Adults with autism are a broad group,” she said. So studies should be done to see what types of services are best for different people.

Although the evidence is “thin” on work programs for people with autism, that doesn’t mean families should not try them, Shattuck said.

“We can’t say none of these things work.”

According to Shattuck, the progress that’s been made in understanding autism in recent years has come from the efforts of parents and advocacy groups. And “innovations” in work programs are coming from the community, too, he said.

As an example, Shattuck pointed to the drugstore chain Walgreens. The company redesigned the work process at some of its regional distribution centers to make it easier for all employees, and began hiring more and more people with autism or other disabilities. The idea came from a Walgreens executive whose son has autism.

Still, when it comes to higher education and jobs, young people with autism seem to be lagging even their peers with other types of developmental disabilities.

In a recent study, Shattuck found that of 680 young U.S. adults with an ASD, 35 percent had not gone to school or held a job since high school. That compared with one-quarter of young people with mental retardation, and only seven percent of those with speech or language impairments.

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