Parents create custom jobs for adult kids with autism

Karen Weintraub | Special for USA TODAY

Lori Ireland and a handful of other parents in Chapel Hill, N.C., had a simple dream: They wanted their teenage children to be able to have jobs someday. Sitting around with nothing productive to do would be unsatisfying and frustrating for their kids, not to mention expensive.

But they also knew the dismal truth: It's tough for someone with autism to get a job.

So, like an increasing number of parents with children on the autism spectrum, Ireland and her peers set out to employ them themselves. Their non-profit Extraordinary Ventures businesses, including one cleaning city buses and another making candles and other gifts, now employs 40 people with developmental disabilities in the Chapel Hill area.

Ireland recently told her story to a group of autism parents and advocates as part of a nationwide effort by the advocacy group Autism Speaks to inspire more parents to follow her lead. (The group has also developed a digital tool kit to help people with autism get and keep jobs.)

Ireland and others will bring their tales to more cities this fall, including Los Angeles, Boston, Chicago, Miami, St. Louis and Scottsdale, Ariz.

Slightly more than half of young people with autism have ever worked for pay since leaving high school, according to a survey published in the current issue of the Journal of the American Academy of Child & Adolescent Psychiatry. Roughly 85% of those who were least disabled had worked, compared with just 12% of those most severely disabled.

By comparison, young people with emotional disturbances, learning disabilities or impaired speech and language were roughly five times more likely to have held a job. And people with intellectual disabilities were twice as likely to have been employed since high school, the survey found.

Paul Shattuck, an associate professor at Drexel University's Autism Institute in Philadelphia, helped conduct the research. He says it's not entirely clear why people with autism are so much more disadvantaged. But he thinks that the social and communications challenges that define autism put them at a particular deficit.

"More and more jobs in our economy require that you successfully interact with other people as part of your job — that is your job," he says. This "is uniquely disabling for people on the autism spectrum."

Though many people still think of autism as a childhood condition, its effects are mostly lifelong. Beginning in the late 1980s, autism diagnoses began to skyrocket, and children diagnosed then are now young adults. About 50,000 kids on the autism spectrum turn 18 every year.

Their parents began advocating for better diagnosis and better care back in the '90s and 2000s. Many of those same parents are now turning their advocacy skills to the needs of young adults on the spectrum.

People with autism may be as good or better at a particular job than someone who is not on the spectrum, says Lisa Goring, vice president of family services at Autism Speaks, though they will likely need special accommodations to be able to work to their potential. Some mainstream businesses such as Walgreens are known for accommodating people on the spectrum, but there aren't nearly enough opportunities, Goring says. So parents are increasingly filling the void.

Ireland's son Vinnie doesn't mind repetitive tasks, like cleaning rows of bus seats or mowing lawns day after day. But someone else must handle the communications aspects of the work, because Vinnie doesn't speak more than a few words.

Other parents play to their adult children's strengths, perhaps opening a T-shirt silk-screening shop if their child has artistic skills, or starting organic farms if they like to work outdoors.

The nonPareil Institute in Plano, Texas, was begun five years ago to take advantage of the founders' children's love of technology. The non-profit trains adults on the spectrum to develop digital games and apps. They have released five apps and a couple of games, with many more on the way, according to Dan Selec, nonPareil's CEO.

The training program, which costs $675 a month, has now grown to 130 students and is in talks to expand to seven more cities, Selec says.

Aaron Winston of Dallas joined the program three years ago after graduating from high school and briefly attempting community college. Though he had no technical skills at the beginning, he has now learned so much that the company recently promoted him to a full-time employee, one of four full-time staffers on the spectrum.

"If it wasn't for nonPareil, I'd probably be struggling through college or doing some type of job I'm overqualified for," he says.