Suburban families help bring autism awareness

SPRINGFIELD — It wasn't that long ago Riley Betz struggled to speak.

Like a growing number of children across the state and country, he was diagnosed with autism at a young age. By the time he was 3, he was going to speech therapy for three hours every day.

Now, at 9, the Aurora boy not only can speak, but he also openly talks to his friends about autism and the importance of understanding the condition.

Riley's story was one of many shared at the state Capitol Thursday as lawmakers and advocates gathered for Autism Lobby Day.

Mary Kay Betz, the mother of Riley and his 11-year-old brother, Ryan, who also has autism, has become one of the leading advocates for autism awareness in the state.

The Aurora woman is executive director of the Autism Society of Illinois and was on hand to talk about the importance of early intervention for children diagnosed with autism and continued public education.

“It never becomes easier because you take two steps forward and then 10 steps back,” she said. “If you meet one person with autism, you meet one person with autism; no two cases are the same.”

One of those unique cases happened in Elmhurst and spurred one of the most important autism treatment reforms in Illinois.

Elmhurst Mayor Peter DiCianni found out his daughter Brianna had autism when she was 3. When he took her for a screening he had to pay $4,000 out of pocket. And when he took her to treatments and therapy after her diagnosis, he still couldn't get any insurance coverage.

“I was able to write the check, but I make a good buck. How does the average guy, even making 50 or 60 grand, afford it? Can't do it,” he said.

So DiCianni worked with lawmakers to get Brianna's Law passed in 2008, ensuring health care coverage for people under the age of 21 with autism at up to $36,000 per year to help with needed social and speech therapy sessions.

But advocates say the state needs to keep focusing on public awareness, as about 1 in 110 children are diagnosed with some form of autism spectrum disorder.

And while state attention has increased for children with autism, advocates say the next step is to help young adults with autism. They say the state should move funding from institutions and develop community homes. Doing so would save the state money and create better living conditions than state institutions, some of which have recently come under fire for severe abuse and inhumane treatment of their residents.

Given the state's dire financial condition, advocates say they are not seeking additional funding right now, but it's vital to continue educating the public about autism, in part to make sure parents get their children tested as soon as there's any hint they might have autism.

“A lot of times people don't want to think their kid has it, so it's important to get over the ego and get them tested,” DiCianni said. “There are roughly 160 kids in a little town called Elmhurst with autism, picture that throughout the state ... but there is hope, we can help cure it.”