House panel on autism gets emotional
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House panel on autism gets emotional

Date: September 15, 2009
By: Rebecca Berg
State Capitol Bureau

JEFFERSON CITY - Emotional testimony from witnesses and legislators alike marked the first meeting of the House Interim Committee on Autism Spectrum Disorders on Tuesday.

The panel, which will seek to examine and refine policy regarding autism by the start of the legislative session in January, convened to gather pertinent facts and suggestions regarding the mental 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 child, was among the first to come before the committee.

At first, the majority of her testimony centered upon statistics. According to Unumb, one in every 150 children is diagosed with autism and $3.2 million is spent on each untreated child.

Then, in a moment of candor, 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.

It was a statement that visibly affected Rep. Dwight Scharnhorst, R-St. Louis, the chairman of the committee.

"I know a lot of people have objections to making this an emotional thing, but when you live it, it is emotional," Scharnhorst said. He himself has an autistic family member.

The theme of empathy carried through the session. Rep. Sue Allen, R-St. Louis, told one witness that her nephew suffers from autism. Rep. Chris Molendorp, R-Cass, worried about families in his own constituency who struggle with the disorder.

"Back home, I've got a list of families that need help," Molendorp told one of the witnesses, Bernie Simons of the Department of Mental Health. Molendorp implored Simons to work to help those families and others like them.

One such person is Kelli Maxwell, who was forced to file 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 to insure autistic children under 18. A similar bill was presented during the 2009 session, but was killed 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 his encouragement. 

"Remember," he said, "with patience goes persistence."