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Published: Friday, 6/11/2004

Ohio autistics are cheated, parents say

It started with anger.

Parent after parent of autistic children denounced Ohio's public school system and state government yesterday for what they viewed as the dismal support for children with autism.

More than 100 people, mostly parents, gave suggestions and vented their frustration to members of the Ohio Autism Task Force, which held its first public forum yesterday at the Medical College of Ohio.

The group, established by the General Assembly, is to gather input and prepare a report this fall for Gov. Bob Taft on how the state should improve autism services.

Susan Seiler, of Sylvania, ap-

proached the microphone and began to sob.

"The better he gets, the more they [the school district] pull services away," she said, tears streaming down her face as she pleaded with the task force to help.

Autism, the fastest-growing developmental disability, is a brain disorder that interferes with how people understand and communicate, according to the Autism Society of America. The society estimates that 1.5 million children and adults have been diagnosed with autism.

Mrs. Seiler has a 5-year-old son with autism and, like many parents who spoke yesterday, told wrenching stories of the emotional and financial struggles she and her husband have experienced as they have battled to get services for their son.

"We're in debt $20,000, and he's mildly autistic," she said.

At first, their son was doing quite well. He was in a preschool with a good teacher, but then the teacher left.

Upset by the change, her son became violent and preschool officials expelled him. She said she begged them not to, but "They said, 'We don't care, we'll see you in court.' "

Like many autistic children, her child does best with well-rounded and consistent services.

"When he has structure and people who care for him, he's fine. He can't stand all the change or he becomes violent," she said.

But when it comes to services for autism, Ohio's commitment is anything but consistent or well-rounded, parents told the task force.

Insurance coverage? Nonexistent. Services for young children? Few. Financial support for families? Not much, many parents pay for therapy out of pocket. Schools' performance? A failing grade.

All this despite statistics showing a skyrocketing rise in the number of children being diagnosed as autistic. Why that's happening isn't clear. Though reliable numbers are hard to come by, the Autism Society of Ohio estimates 1 in 166 people are autistic, meaning more than 68,000 Ohioans may have the disorder.

Kim Renner, a Toledo parent with an autistic son, said in many cases public schools are unwilling or unable to help autistic children.

"It's no more effective than doing nothing in many cases," she said.

Kristi Jiannuzzi, another Toledo parent with an autistic child, said many parents like herself are forced to seek therapy or tutoring out of pocket because of this situation.

"Our President says 'No child left behind,' and yet our children are being left behind," she said.

Barb Yavorcik, an Ottawa Hills parent of an autistic child and president of the Autism Society of Ohio, agreed, adding that many insurance companies refuse to cover autism.

"It's sad and pathetic that an 80-year-old woman with a stroke can get speech therapy, and yet a 5-year-old with autism can't," she said.

The Ohio Autism Task Force has seven more public forum meetings scheduled throughout the state.

The next one will be in Akron on June 24.



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