Few adults with autism are independent, study finds

Chicago Tribune

CHICAGO — When Margaret Martin’s son Noah goes down a slide, someone has to be at the top, someone at the bottom and, preferably, a third person standing by to help.

Noah is 9. He has autism, and his mother doesn’t know when — or if — he’ll ever go down a slide alone.

Martin’s fears about what the future holds — for both Noah and his 6-year-old sister, Hannah, who also has autism — are validated in a new national study showing that kids with autism are struggling mightily to enter mainstream adulthood.

The study by Easter Seals found that more than 80 percent of adults with autism between the ages of 19 and 30 are still living at home. Only one-fifth of children 16 and over with autism are employed, compared with 75 percent of people that age without developmental disabilities.

And children with autism under the age of 18 are far less likely than typical children to take advantage of some of the basic tools of modern society, such as cell phones, bank accounts and credit cards.

It’s believed that one out of every 150 children born in the United States develops autism. Within a decade there will be an estimated 1.5 million Americans with autism, a developmental disorder that can make it difficult for many to communicate, socialize and learn.

Parents across the country are struggling to pay for the therapy most children with autism require and the vocational assistance many adults with autism need to find jobs. The study found that only 39 percent of parents say their insurance regularly covers the services they need, and 32 percent say insurance either rarely or never helps out.

“When you see a study like this, you see the parents are just drained,” said Wendy Murphy, director of therapeutic schools for Easter Seals Metropolitan Chicago, which was not involved in the national study. “They’re spending their life savings and they’re in massive debt because they’re trying to get therapies that insurance won’t cover.”

For more than two decades Lynn Cahill has fought insurance companies to get better coverage for the long hours of therapy her son David has each week. She has never been able to get more than 50 percent of those bills paid.

“That’s been hard,” said Cahill, whose son is now 22. “Every three years we have to take him for a diagnostic test to make sure he’s on the right track. Those tests are now around $4,800, and we’re responsible for half of that. But it’s your child, and you just do what you have to do.”

Each day, Murphy sees how the potential of adults living with autism can be cut short by a lack of resources needed to help them become contributing members of society. One example of this can be seen in the state funding that comes to her West Side school, the Easter Seals Therapeutic School and Center for Autism Research.

Through age 21, students at the center receive more than $30,000 a year in state aid. But as soon as they hit 22, that funding drops to about $10,000 a year.