Autism Speaks Exec Speaks

The National Institutes of Health defines autism spectrum disorder as “a group of complex neurodevelopment disorders characterized by repetitive and characteristic patterns of behavior and difficulties with social communication and interaction. The symptoms are present from early childhood and affect daily living.”

Lorri Unumb of Lexington, South Carolina, is vice president of state government affairs at Autism Speaks, the world’s leading autism science and advocacy organization. In a telephone interview, 48-year-old Unumb said, “At our son’s (Ryan’s) 18-month check-up, our pediatrician inquired about his words and speaking. Our answer was that he didn’t. He didn’t say any words. Beyond him being a colicky baby, we didn’t notice any other idiosyncrasies. We were first-time parents.”

At 22 months, Ryan was diagnosed with an autism spectrum disorder. The Unumbs went through a short period of grieving before turning their attention to giving Ryan the “best possible life.” Soon thereafter, doctors advised the Unumbs to start a 40-hour-a-week applied behavior analysis program with Ryan, which began changing his disruptive into functional behaviors.

She said, “I had no idea then that health insurance wouldn’t pay for this program the doctor recommended. It struck me as unfair that people would pay monthly premiums and if the reason they needed it was autism, they couldn’t get the treatment the doctor prescribed.”

The Unumbs paid out-of-pocket for treatment for several years. Both mother and father were attorneys. But not every parent of a child with autism had such resources, and Unumb knew it. “So I wrote a bill to remedy (the situation),” she said. “By this time, we’d moved from Washington D.C. to South Carolina. I had friends in my (autism) support group in South Carolina who knew their child needed therapy but couldn’t do anything about it. It was a knife in my stomach thinking how unfair that was.”

While lobbying South Carolina legislators, she faced strong opposition from health insurers, until winning in 2007. Her bill was renamed Ryan’s law. Autism Speaks then hired her to push for similar laws in other states, and so far she has succeeded in 44.

To parents of children with diagnosed autism, she said, “The most important thing is not to spend too long grieving or wondering why this has happened, but instead to put your efforts into what you can do this point forward.” She said Autism Speaks had an online video to guide families through their first 100 days following a diagnosis.