A recent survey from the largest national autism advocacy group says Chicago is one of the top 10 places for people with autism to live in the United States. But advocates and parents of kids with autism are giving that report mixed reviews.
Autism Speaks conducted the survey online, reaching out through social networks such as Twitter, Facebook and various blogs.
About three-quarters of the 848 people surveyed said they were not satisfied with the autism resources available in their community. Joining Chicago in the top 10 were New York, Los Angeles, Cleveland, Philadelphia, Boston, Minneapolis/St. Paul, Seattle, Milwaukee and the northern New Jersey region.
Dr. Ari Goldstein, director of Cognitive Learning Center Inc. in Chicago, says the Chicago area’s wealth of resources, both medical and non-medical, landed it in the top 10.
“In terms of autism, there is not a lot medical doctors can do, so non-medicinal practices are especially important,” he said. “I think there is a large group of non-medicinal practitioners in Chicago to help those diagnosed with autism.”
Autism Speaks also pointed to statewide insurance reform in Illinois and other states with top-rated cities. In 2008, Illinois passed a law requiring insurance companies to cover treatment for children with autism up to $36,000 per year.
But Mary Kay Betz, executive director of the Autism Society of Illinois, says problems with special education in Chicago and a lack of state funding for autism programs keep the region from being a leader in autism treatment.
“We have a lot of great organizations within our state that help people with autism,” she said. “Chicago might be an autism-friendly city, but you don’t come to Illinois to get services.”
Wanda Satkas, whose 19-year-old son, John, was diagnosed with autism at the age of two, says Chicago may have a lot of resources to choose from, but that that’s no guarantee of a good experience for families – or a good result for kids.
“For the children in (Chicago), it’s a very frustrating situation,” says the Frankfort mom.
Satkas moved to Frankfort because the mix of inclusion and special education classes worked for John.
“Frankfort appealed to me because … they had a great opportunity for him to be included in classes and also be in a self-contained class,” she said. “He was in a special education English classroom for reading and English skills and he was included in the regular math classes, history and science.”
What was most important, she says, was to make sure her son had a normal school experience, riding the bus to school with the neighborhood children and participating in activities like flag football and baseball.
Thirteen years ago, frustrated by the lack of information and support for families like hers, Satkas started the Chicagoland Autism Connection. Today, she says, the autism network of Illinois is much stronger, but navigating it can still be a challenge.
“If you’re a parent and a strong advocate then a lot of things can happen for you,” she said. “It’s there. It’s just trying to access it.”