Registry project could aid parents of autistic children

Wednesday, October 11, 2006

Dena Petzoldt of Jackson was handing out fliers at the recent SEMO District Fair parade when a tearful mother anxiously took one with concern for her child.

The subject of the flier: autism, a topic Petzoldt knows much about through experienced gained from raising a 9-year-old son diagnosed with the complex disorder as a toddler.

"She was thinking that her child might have autism, and she didn't know where to go," said Petzoldt. "That's the case when you first start out."

Missouri officials said Tuesday they hope to help such parents by creating a new national registry for families dealing with autism. They hope it serves as a model for other states.

Those families could soon have a new resource to learn more about the condition, connect with others in their situation and volunteer for a research project.

A University of Missouri-Columbia center dedicated to studying autism is pairing with the Kennedy Krieger Institute in Baltimore. That group is developing a national online registry for parents of children with autism. The university and the state Mental Health Department are creating a state-level registry that will link to the national one.

"We don't clearly understand what services are out there, what services are benefiting people, and where there are gaps in service," said Janet Farmer, director of the university's Thompson Center for Autism and Neurodevelopmental Disorders.

Autism is a disorder characterized by a wide range of behaviors, sometimes anti-social, including insistence on sameness, difficulty communicating and an inability to socialize. The Mental Health Department said it serves about 3,400 people with autism but estimated that about 30,000 in Missouri could have the disorder.

Helping researchers

The idea behind the registry is twofold. First, it should help researchers learn more about people with autism, their backgrounds, medical history and what treatments have worked or failed. The creators also hope it can help researchers easily find potential subjects who match their criteria.

"Subject recruitment is one thing that's slowing down research in autism," said Paul Law, who is spearheading the Interactive Autism Network national project.

In addition, it should give families a place to learn about new developments and tell researchers what problems are pressing and where their focus should be.

"What parents think they need to better understand and what researchers are going after are not always in alignment,".

Some families have begun providing information on a pilot basis, and the Kennedy Krieger Institute is tweaking the system based on their experience, Law said. He expects the registry to launch nationwide later this year.

Farmer said she expects Missouri's version to be up and running early next year.

Local reaction from parents of autistic children was mixed. Petzoldt, for example, called the new program wonderful. Petzoldt's 9-year-old son, Ben, was diagnosed with autism when he was 2.

"One of the biggest struggles we had when Ben was first diagnosed was knowing what to do," she said. "We felt like we were on our own at first. You feel like you're the only ones out there."

'Sounds good in theory'

But Brian Noack, whose 9-year-old daughter, Alexis, has autism, said he was skeptical.

"My experience has always been, it sounds good in theory, but it doesn't do squat," he said. "So what if I can get online and read about autism? I can Google it and read about it now."

Still, Noack -- who works for the Department of Health in Sikeston, Mo. -- said such a registry might be useful for some parents.

"It could be helpful to families early on, who don't know where to go," he said. "It could also be helpful to the medical community, to have a Web site that lays out all the programs for them."

Staff writer Scott Moyers contributed to this report.

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