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16 Sep

First autism committee meeting brings emotional testimony

“Very recently, my son called me ‘Mommy’ for the first time ever,” Unumb said as she began to cry.

Wednesday, September 16, 2009

JEFFERSON CITY — Emotional testimony from witnesses and legislators marked the first meeting of a state House of Representatives committee that seeks to examine autism insurance policy.

The Interim Committee on Autism Spectrum Disorders convened Tuesday to gather information about the disorder. Early on, the hearing took an unexpected turn from the professional to the personal.

Lorri Unumb, an advocate for Autism Speaks and the mother of an autistic eight-year-old, was among the first to come before the committee.

At first, her testimony centered upon statistics. One in every 150 children is diagnosed with autism, according to the Centers for Disease Control and Prevention, she said. She also cited a Harvard University study that found that medical costs can total $3.2 million over the course of an autistic person’s lifetime.

Then, Unumb opened up to the 16 legislators seated before her.

“Very recently, my son called me ‘Mommy’ for the first time ever,” Unumb said as she began to cry.

Committee Chairman Rep. Dwight Scharnhorst, R-St. Louis, said he has an autistic family member, as does Rep. Sue Allen, R-St. Louis.

“I know a lot of people have objections to making this an emotional thing, but when you live it, it is emotional,” Scharnhorst said.

Rep. Chris Molendorp, R-Belton, said he worries about families in his district who struggle with the disorder.

“Back home, I’ve got a list of families that need help,” Molendorp said. He asked Bernie Simons of the Department of Mental Health to work to help those families and others like them.

One such person is Kelli Maxwell, who said she filed for bankruptcy over the summer after spending tens of thousands of dollars on treatment for her autistic child.

“We were desperate,” Maxwell said. But because her son was able to continue treatment, “He has so much hope for his future.”

During the next session of the legislature in January, Sen. Scott Rupp, R-Wentzville, and Sen. Eric Schmitt, R-Glendale, will likely introduce a bill that would require insurance companies to cover autistic children under the age of 18. A similar bill was introduced during the 2009 session but died in the House.

Until a bill passes, parents like Jennifer Gray are prepared to wait.

Gray sat through nearly three hours of testimony before she was allowed to speak before the committee. When she finally reached the microphone, she attributed her patience to her four-year-old autistic son, Mason.

“They say patience is a virtue, but parents of autistic children have no choice but to be patient as we navigate ourselves through this disorder,” Gray said. “However, patience is not a luxury that we can afford when it comes to getting our kids the medical treatment they need.”

Scharnhorst offered Gray encouragement.

“Remember,” he said, “with patience goes persistence.”

Comment by: Luella Johnson September 16, 2009

As the parent of an adult Autistic son, I am very pleased to learn of the efforts to help the parents of children with this disorder. Sometimes, I believe the general public, “just doesn’t get it” when it comes to the pain, frustration, disappointment, and emotional strain it takes to teach, care for and most importantly love our children with Autism. It is an ongoing lifelong battle. Progress seems to be slow at times, but as I can remember, the slightest little improvement by your child is like a Giant step forward. I hope the bill passes, and I also hope there is some serious thought given to the fact that these children will not be children forever, and they need to have some programs or plans in place to help them transition into adulthood, and to be as self sufficient as they can as members of our communities. In my own sons’ case that has been a very difficult task to accomplish. Employers need to give him a chance to show what great skills he has to offer, even though he has Autism.

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