State must expand response to autism, activists tell panel

An expanded definition of autism requires an expanded state response, activists and parents of autistic children told the Missouri Blue Ribbon Panel on Autism during a hearing Friday in Cape Gir?ardeau.

At one time, a diagnosis of autism generally focused on issues such as a lack of communication or other easily seen issues. Today the diagnosis covers a range of actions in which the sufferer can function but has traits of the more serious forms of the condition.

In remarks to the panel, Sen. Jason Crowell, R-Cape Girardeau, said the widening definition is also gaining the condition more attention from academia and private organizations. "It is now incumbent on the General Assembly to dovetail with those efforts," he said.

The 16-member panel, led by chairman Sen. Scott Rupp, R-Wentzville, and Sen. Jolie Justus, D-Kansas City, includes physicians, parents and educators. The panel's first meeting for taking testimony was Friday in the Glenn Auditorium of Dempster Hall on the Southeast Missouri State University campus. The panel will hold three more hearings over the next two months before reporting on recommendations for legislation and state policy.

According to the Centers for Disease Control and Prevention, one in 150 children are diagnosed with a condition that is in the "autism spectrum." Nationally, autism costs about $90 billion annually.

The Missouri Legislature appropriated $2.6 million this year for an autism treatment and diagnostic center for Southeast Missouri, Crowell noted, as well as increasing spending on autism treatment to $3.6 million. "This is about improving the quality of life for autistic children," he said.

The panel needs to study not only what the current needs are, Rupp said. Members need to look at what has been done in the past, he said, because term limits means a massive turnover of lawmakers on a regular basis. "We need a blueprint for the future legislators," he said. "This is the road map to move people forward so we don't form another blue ribbon commission and the report goes on the shelf."

A local effort

One aspect of autism being addressed by the Tailor Institute, a local effort named after artist Taylor Crowe, is the needs of functional people with extraordinary talents who also exhibit some of the symptoms of autism.

"The Tailor Institute can offer promise and potential," said Carol Statler, director of the institute. When a client can explore their area of talent, she said, "I see that look, and it is the promise of a more meaningful future."

The Tailor Institute, however, can only help six people at a time, she said.

Another effort to treat autism that focuses on children is the Collaborative Autism Intervention Project sponsored by the University of Missouri-Columbia Thompson Center for Autism and Neurodevelopmental Disorders. Matt Stoelb, director of the center, said the project is treating 25 children ages 2 to 12 with strong results. The early, intensive behavioral intervention program began about 2 1/2 years ago with funding from the Southeast Missouri Parent Advisory Committee on Autism.

Of those served, he said, two have been shown to have overcome their condition to the point of exhibiting no symptoms and 75 percent have begun speaking again after six or more months. The treatments, he said, are provided by consultants and intervention teams that include parents, teachers and others.

"There are a lot of signs locally that the efforts are coming to fruition," Stoelb said. "The results are far more likely to be astounding with younger kids."

One big hole in autism support is for adults with the condition, said Marilyn Cox, who spoke about her 36-year-old son, Brian. When her son was young, she said, "two pediatricians said, 'Put this child in an institution and forget he was ever born.'"

There is no place to gain the training and other treatments Brian needs to become independent, Cox said. "I've been through the Division of Vocational Rehabilitation," she told the panel. "They are trying to fit a round peg into a square hole. They don't know how to deal with someone with autism."

Justus, the Kansas City legislator, said the panel's recommendations will form the basis for legislation in the coming year. The problem of autism, she said, isn't a Republican or a Democratic issue and shouldn't become bogged down in political wrangling.

"We need to cut down the wait time for kids getting diagnosed and bring together innovative programs," she said.

rkeller@semissourian.com

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