Affected by autism: Getting all necessary therapy can be a struggle

Pierce Robertson has a part-time job working at Skyview Animal Clinic.

"I walk the dogs and clean their rooms," said Robertson, who loves animals. The words arrive in a halting but enthusiastic fashion.

Robertson has autism.

According to the Centers for Disease Control, autism is a group of disabilities in the way a person interacts and communicates. Because each person's symptoms are different -- those with autism have thinking process ranging from gifted to impaired -- the condition is referred to as Autism Spectrum Disorders. An estimated one in 150 children has some form of autism. It appears to affect about four times as many boys as girls.

Between 2003 and 2007, the number of children diagnosed with autism doubled. Early diagnosis and various forms of occupational therapy have been effective in helping minimize the effects of the disorder. But treatment, which includes intensive one-on-one applied behavioral analysis, is expensive and often difficult to get, according to parents, because there aren't enough therapists to meet the need for services.

A debate over autism's cause has splintered support for research. Alison Singer of Scarsdale, N.Y., quit her Autism Speaks job after publicly stating she does not believe vaccines cause autism. She formed an independent group, Autism Science Foundation, to support genetic research.

Other activists like Dr. David Crowe, a Cape Girardeau orthodontist whose adult son Taylor has autism, focus on finding better treatment methods. Crowe founded The Tailor Institute to help other families, especially those coping with high-functioning autism such as Asperger's syndrome. David Crowe recently accepted a seat on the Missouri Commission on Autism Spectrum. He applauded efforts by Gov. Jay Nixon and Sen. Jason Crowell, R-Cape Girardeau, to mandate insurance coverage for autism. According to Nixon, it is the only one of 12 mental health disorders not covered.

"Nobody knows the struggles we had with health insurance," David Crowe said. At one point, the insurer "sort of capriciously decided they didn't want to cover autism."

The earlier a child receives help the better, said many parents interviewed for this story.

Nancy Robertson, Pierce's mother, said she wants the same thing for her son that every parent wants for a child: to see him grow into an independent adult. It has been a struggle to get vital therapies, though.

"Years ago I put him on a waiting list for speech therapy. He's still waiting," she said. Pierce, now 19, has received occupational and other therapy, she said, and is currently learning to drive a car.

Kim Daniel, who has twin 6-year-old daughters with the disorder, said every child with autism should get therapy.

"There's no way to help everybody at this time," she said. "But there are still some services for them. They are just not 'Cadillac.'"

She would like to see more people use the Missouri Department of Mental Health's Office of Autism Services as an information clearinghouse.

Mary Lou Stevens said she did just that after her grandson was diagnosed.

"He is doing so much better. He has anger issues, but we're doing so much better. The state helped us so much with the treatments," Stevens said.

pmcnichol@semissourian.com

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