If not for Carol Madison, the Illinois Center for Autism might not be serving nearly a thousand metro-east families today.
That’s why earlier this summer the board renamed its Fairview Heights location the Carol A. Madison campus.
The long-time executive director retired in 2004, but her legacy lives on.
“If it wasn’t for her, (the center) wouldn’t be there,” said Chris Fournie, an autism center board member. “A lot of (the innovation at Illinois Center for Autism) comes from Carol’s influence. She was always very open to anything that could help.”
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Carol, 78, was surprised by the honor.
“That happens when you’re dead and gone!” she said.
The Illinois Center for Autism began in 1977 as a satellite classroom of St. Louis’s Judevine Center for Autistic Children. There were four children, a teacher, a board of directors and Carol, the director.
It now has two campuses — an elementary school with six classrooms in Belleville and the Fairview Heights location with nine classrooms for adolescents, offices, a conference room and multi-purpose room. More than 900 students and clients receive services that include vocational skills training and employment.
Carol said she “was blessed to have wonderful people working for me” in the 27 years she was with the state autism center.
“I loved my job and I feel very lucky that I had that opportunity. ... It was hard work, but I loved it.”
Carol was in her 30s when she went back to school after putting her husband Rich through college. She earned a bachelor’s degree in special education and a master’s in school psychology from Southern Illinois University Edwardsville.
When it came time to look for a job, a professor put her in touch with a group trying to get services for those with autism in Illinois.
”My professor wanted me to do it, and I felt I could do it. And I did,” said Carol.
Before the Illinois center, families who wanted their children at home had to go to St. Louis to get them therapy. Chris, whose brother Carl has autism, said her mother and a handful of other metro-east families would make the daily trek to the Judevine Center in University City.
The families were so “desperate” to have services for their children, parents did anything the Missouri center needed.
“They were the janitors,” said Chris. “My dad would do plumbing. Mom did a lot of clerical. All the families pitched in. ... Because in the ’70s, there was no law that provided services for a disabled child unless they met certain criteria. So if your child needed help but didn’t fit into defined programs, too bad so sad.
“That’s what people don’t realize. They don’t realize how far we’ve come. And that was Carol’s contribution and brilliance, just dogged determination to get the laws changed and get coverage for these kids. … She was quite the force of nature to deal with.”
It was Carol who spent the day working with students, and the evenings driving to Springfield to try to get a law passed to have a child’s school district provide services for that child until age 22. If the district cannot provide services, it must pay an agency to do so. That law, 105 ILCS 5/14-7.02 became effective in 1978. It was a long and hard battle to win, Carol said, but necessary.
“That made it a whole lot easier,” Carol said recently while nursing a coffee at the County Seat Cafe in Edwardsville. The mother of three grown children has four grandchildren and five great-grandchildren. Her husband died in 2011.
She recalled the many times she worked with students during the day, and “begged for money” at night at any civic organization that would listen.
“No one knew back then (in the late 1970s) what autism was. ... People still don’t necessarily know,” Carol said.
Autism is a neurological-based disorder that affects one in 68, according to the Centers for Disease Control. Eighty percent are male.
To varying degrees, patients have difficulties with social interaction, verbal and nonverbal communication and show repetitive behaviors. There is no known cure; there is treatment to help patients learn social cues and become more verbal.
People who have autism may need speech and occupational therapy. They may need social skills training, and teachers may need special approaches to teaching. Behavioral intervention can help, too.
Before Carol, all of those responsibilities — and the financial burden that came with it — fell to parents.
Making things happen
Many involved with the Illinois Center for Autism have a very personal reason to be there — a nephew with autism, a brother with severe needs, a son doctors said should be institutionalized.
Carol is among the exceptions, but it is her work that made the Illinois center what it is today say the families and others associated with it.
“There (have) been times I’ve called and just talked,” said Illinois Center for Autism parent Michele Cope, of Bethalto. Her 19-year-old son, Hunter, has been a client at the center since he was 9.
She might start off with a short Hunter-related question that grows into a longer conversation. People at the Illinois center understand that Hunter’s needs are all-consuming for a family, Michele said.
Michele said her son Hunter’s doctors repeatedly suggested to the family that they place him in a group home, but he found a home in the autism center.
“The first initial walk through, we knew it would mesh well for Hunter,” said Michele, who explained it was a gut feeling.
It wasn’t easy.
Michele said it was “restraint after restraint” for Hunter because of his anger and aggression. Hunter hasn’t been physically restrained “in years” and is now employed at Pasta Fare (5900 N. Illinois, Fairview Heights), the Center for Autism’s carry-out food service and catering program that provides vocational training and employment for adults with autism. Petals Remembered, a floral preservation shop next door, does the same thing.
Carol was instrumental in making those programs happen, too.
“I can remember hearing people go, ‘Are they crazy? Are y’all nuts? They can’t do that,’” Chris said. “And the answer was, ‘Sure they can.’”
The board member said the center’s clients have been working in the community and showing appropriate behavior on the job.
“We have clients who have held jobs in the community for 10, 15, 20 years because ICA is supporting them and helping them,” Chris said.
Michele knows the effect Illinois Center for Autism has had on her son.
“The ICA — they’ve been lifesavers with him,” she said while fighting back tears. “Without ICA, I know Hunter would be in a group home. The suicide (threat) was a big thing with him.
“This place — he’s grown up more. He’s learning more. He’s got a job. His reading is amazing. He’s more social. He has friends that he talks to on the phone.”
At a glance
Here’s what you need to know about the Illinois Center for Autism
- What it is: A not-for-profit, community-based, mental health treatment, and educational agency dedicated to serving people with autism.
- Where it is: 548 Ruby Lane, Fairview Heights
- Number of students: 48 students attend the Belleville campus at 1306 Wabash Ave., 65 students attend the Carol A. Madison Center in Fairview Heights.Twenty-four students attend satellite programs at various public schools in the metro-east.
- How it works: Referrals are made through local school districts, hospitals, doctors,and the Department of Human Services.
- How it is funded: Students are covered by their home school district until the day before their 22nd birthday, as required under the law. The ICA transitions students to Pasta Fare or Petals Remembered and also helps them find other employment in the community.
- Information: www.illinoiscenterforautism.org