Wednesday, December 17, 2008

New Easter Seals study shows the strain of autism on families

From "On Parenting" in U.S. News & World Report. You can download the Easter Seals Living with Autism Study here.

Having a child with autism can be a huge financial strain, with 52 percent of parents saying the family's finances are drained. Three quarters of parents of children with autism worry that their child won't ever get a job or won't have enough money to get by after the parents die.

These sad numbers come from a new survey of 1,652 parents of children with autism up to age 30, as well as 917 parents with typically developing children. The survey was conducted by Easter Seals.

"Normal" families weren't nearly as stressed financially—just 13 percent of typical parents said child-rearing was draining their family's resources, and 18 percent said they worry about who will provide for their children after they die.

Having a special needs child pretty much guarantees financial stress, whether it stems from paying for therapy that insurance doesn't cover or from quitting work to provide care and drive children to therapy. "But every time we look at autism versus other disabilities, the disparity is greater," says Patricia Williams, national director of autism services for Easter Seals, a Chicago-based organization that provides services for people with disabilities. She came by U.S. News's offices today to talk about why autism feels different than other disabilities.

We have a pretty good idea how to accommodate physical disabilities—a person with a wheelchair needs a ramp, or a person who can't see needs Braille signs. But with autism, the disability comes in communication and social skills. "Having a colleague that would never look me in the eye?" asks Williams. "Our society is not as accommodating."

That social deficit can hurt parents, too. A child with cystic fibrosis can give parents the emotional connection that will help them get through the darkest days. A child with autism might not communicate those feelings.

The answer, Williams thinks, is for parents of children with autism to start thinking beyond the struggles of the daily routine and starting thinking that yes, my child will go to college, yes, my child will get a job, and, yes, my child will have a meaningful role in society. "We know how to do these things," Williams says. "We know how to get jobs for people with autism." Starting in January, Easter Seals will be holding workshops around the country at which parents can learn how to make that happen. It's time for those parents to hear that they can dream those dreams, too.