Area advocate says Missouri coming to the forefront of autism awareness

When Marilyn Cox took her son, Brian, for his kindergarten screening decades ago, the doctor asked her if she knew about autism. She did not recognize the word.

At the time, Brian could already read, do math and speak Spanish. The doctor told her to get a book and start reading about the disorder.

More than 20 years later, Cox has many books on the subject and for the past year she helped put together one meant to help parents, physicians and psychologists intervene with the disorder early.

She worked with psychologists, special educators, physicians and a few other parents to establish guidelines to provide more consistency statewide for autism diagnosis and treatment. According to the Centers for Disease Control and Prevention, one in 110 children has an autism spectrum disorder.

"I was talking to people about something I was really interested in, and they were listening," she said.

The Thompson Foundation for Autism and the Missouri Department of Mental Health, Division of Developmental Disabilities brought together parents and professionals to discuss the best practices for assessing the disorder. The group released its findings Thursday.

Cox's passion for autism awareness is evident from her participation in advocacy projects like the guidelines initiative to the bumper stickers on her car. She contends Missouri is coming to the forefront of autism awareness and she has seen the evolution throughout the region. The word "autism" once was unspellable and unrecognizable, she said.

When her son graduated from Central High School, the family sought treatment in Philadelphia. There, Brian saw psychologists and learned vocational skills. Similar treatment is now available in Cape Girardeau at the Autism Center for Diagnosis and Treatment, which brings four organizations under one roof.

The recently opened autism center has been booking appointments for six months. Center director Connie Hebert said there is now a heightened awareness throughout the region. Hebert, a special educator, also brought her expertise to the table for the guidelines project. She said she hopes the new standards will capitalize on the increased regional awareness.

"I really see it as a huge benefit to Southeast Missouri," she said.

The statewide standards will bring more consistency to the diagnoses made by a spectrum of health care professionals, she said. Treatment, in turn, will also be more consistent, she said.

While there are no enforcement mechanisms to ensure the guidelines are followed, Hebert said the project could merge with insurance coverage requirements in the future. Lawmakers are pursuing legislation that would require insurance coverage of autism. According to the advocacy group, Autism Speaks, 19 states, most recently Iowa and Kansas, have enacted insurance reform legislation for autism.

The guidelines book defines autism terminology, outlines available services and provides diagnosis scenarios, among other information. When releasing the guidelines, doctors said their goals were to increase early intervention and bring more consistency to autism treatment. They said they hope the standards will improve the geographical and socioeconomic disparities that influence the time it takes to receive a diagnosis, which affects intervention efforts.

Cox said she tries not to dwell on the effects of an earlier intervention with her son, who was diagnosed in the mid-1980s. When he was 16, he was diagnosed in Topeka, Kan., after several visits with specialists in Missouri, she said.

At 39, Brian has a job and last year started learning to play the piano. When talking about sports or music, he converses easily. He sometimes exercises his Spanish skills when ordering in restaurants.

She said parental involvement and intervention at any age are keys to treatment.

"It's been proven, to me at least, that it's never too late," she said.

She said she hopes the new guidelines will help parents make better decisions regarding their child's treatment.

"I hope they can take that book and find something that says, 'I need to see someone,'" she said.

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