Parents tell of trials of autism

By BARBARA HOBEROCK Tulsa World Capitol Bureau 9/19/2008
Legislators hear how families can go broke or break up.OKLAHOMA CITY — Since Deborah Decker's children were diagnosed with autism, the course of her family's life has changed, she told a legislative panel Thursday. Decker and her husband seldom leave their Oklahoma City home together, she told the House Economic Development and Financial Services Committee, which is conducting an interim study on autism.

Many parents with autistic children divorce, said Decker, president of the Autism Society of Central Oklahoma. Her two children don't play or interact with each other or their peers, she said. One becomes frustrated because he is unable to express himself, while the other hasn't said his first words yet at age 5, Decker said. For the last five years, her family has lived in a crisis mode, she said. "I pray today the government is going to do something to help my family," she said.

Last session, legislation to mandate insurance coverage for the diagnosis and treatment of autism died in the House. It will be reintroduced next session, said Sen. Jay Paul Gumm, D-Durant, the author of the legislation. Wayne Rohde, whose son Nick is autistic, described his Edmond family's struggle to get what they felt were proper services to help Nick. Rohde said his family spends nearly $5,000 a month on services for Nick and pays a little more than $1,000 in insurance premiums, but the insurance doesn't cover autism, he said. He and his wife have wiped out 20 years of retirement savings to pay for their son's care, Rohde said.

Lara Mattox, a psychologist with the Tulsa Developmental Pediatrics and Center for Family Psychology, said early detection and intervention are critical to helping children with autism. Treatments include speech and language therapy, occupational therapy and behavioral therapy, she said. In addition, parents need support and training, she said. Mattox said it is difficult for parents in rural areas to obtain access to the care they need, which is usually available in the metropolitan areas. A "phenomenal" number of children go untreated or undertreated, she said.

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