Not so very long ago, Southern Illinois had few options to offer the families of those with Autism Spectrum Disorder. There was home, which could be “a nightmare;” or there was an institution.
But families like the Manns, who faced that nightmare when their daughter was young, turn instead to the Illinois Center for Autism. The ICA is celebrating its 40th anniversary in June, not with a party but with more hard work.
On the more severe end of the autism spectrum is Camie, 48, a longtime client of the ICA. Donna Mann, 68, said the center has provided purpose for her daughter Camie and provided reassurance to her parents.
“Life without the center would be a nightmare,” Donna said. “Think about it. You can’t talk, can’t read, can’t even turn on a TV. What would you do 24 hours a day? ... It would be miserable.”
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Instead, Camie has friends — “she doesn’t have a best friend, but they all take care of each other,” Donna says — and has a job at Pasta Fare through the autism center.
“She is treated well, respected and protected,” Donna said.
When we went to Carol (Madison, founder of the ICA), it was ‘our kids.’ It went from being ‘your child’ to ‘ours.’ And we’ve been working with them since.
Donna Mann, parent and board member
Early on, seeing their daughter treated with respect was sometimes more than the Manns could have hoped for.
Camie is the oldest of the Manns’ three children. The new parents knew something was different about their daughter early. With Mann’s husband in the Air Force, the young family saw new doctors and got new diagnoses with each move. Her medical folder was quickly quite thick, all with new medicines and therapies. When Camie was a toddler, a doctor at their new post in Georgia gave Donna no hope.
“He said, ‘You need to put her in an institution and walk away. Forget you ever had her. You’re young and can have other children.’”
Decades later, telling the story still makes Donna’s hands shake with anger and draws tears to her eyes.
“I didn’t use profanity until then,” she said in a soft drawl of her native Florida. “But I told him what he could do and where he could put it.”
Camie was diagnosed as being on the autism spectrum later, when the family was stationed in Oklahoma. And that’s when, Donna said, the military told them, “We’ll get you help, where do you want to go.”
After moving to Maryville, the Manns discovered their plan for Camie would not work for their family, but they soon found the fledgling Illinois Center for Autism.
Carol Madison had opened the autism center’s day school in Fairview Heights in 1977. It was small, and in the basement of a church, and perfect for 13-year-old Camie in 1982.
“When we went to Carol, it was ‘our kids.’ It went from being ‘your child’ to ‘ours.’ And we’ve been working with them since,” Donna said.
From school to work
The school-aged children are “usually sent to us for behaviors,” says Rachel Newsome, director of communications and development at the autism center. “Biting, kicking, punching, throwing desks and iPads ... some curse worse than sailors.”
Teachers and staff at the center are specially trained to deal with such outbursts in ways that protects both students and staff. While the state allows up to 10 children per teacher in a special education classroom, the center has one teacher, plus an aid or assistant, for each room of six to eight students.
“There’s at least two, if not three, (staff) in every room,” Newsome said.
The school at the Carol A. Madison campus in Fairview Heights supports adolescent students and the Belleville campus, is for elementary-aged students.
Those students are referred by their home school districts, who pay the autism center the students’ tuition.
Both campuses equip teachers and staff with pull-on bite guard sleeves and encourages staff members to cover their hair to prevent it from being pulled. They are trained in gentle physical restraint that keeps a child from hurting themselves.
“I’m proud to say we’ve never had a student hurt,” Newsome said. Teachers and staff have been injured during student violent outbursts, she said.
The center starts helping children at age 3, when autism is sometimes diagnosed, through adulthood.
The autism center has two campuses of about 120 schoolchildren serving those on the more severe end of the spectrum. It has about 40 in adult programs that include employees at Pasta Fare and Petals Remembered.
Even more clients, who are more high-functioning, use “Face to Face,” a social advocacy outreach, and “We Connect” to learn social skills. The center offers help to siblings of those with autisum, as well as acting as impromptu counselors for families in crises.
The center and other families proved so important to the Mann family that Donna became a member of the board of directors. Camie is now employed at Pasta Fare, the catering business of the autism center, and works there five days a week.
“And yes, she pays taxes,” Donna said.
Seeing people succeed
Chuckie, 46, and Clyde, 42, have cleaned rooms at the Super 8 Motel in Fairview Heights for more than 25 years. They don’t clean quite as many as the other housekeepers — together, they clean 12 rooms in about six hours, compared to the housekeeper average of three rooms an hour. But what the men do, they do very well. They are considered higher functioning on the autism spectrum, although Chuckie prefers not to talk.
(The ICA has) always been very supportive. We’re not in this by ourselves, for sure.
Kevin Wiggs, regional manager of hotel chain that employs people with autism
“They do my windows more than anybody,” said general manager Julie Martin, of O’Fallon.
Chuckie and Clyde are also in effect ambassadors between those who have Autism Spectrum Disorder and the neurotypical public. While their encounters with guests are minimal — they work from 8:30 a.m. to 2:30 p.m., between check-out and check-in for guests — they also work around hotel staff.
“I think when they first came here, people weren’t used to seeing persons with disabilities in the workplace. We did have to do some explaining; I do think there’s been kind of a shift, and people are more accustomed,” said Kevin Wiggs, regional manager of several hotels including Super 8. “Maybe as a society we want to see people succeed to their abilities.”
The Illinois Center for Autism makes employing Chuckie and Clyde easy, Wiggs said, and he’s open to hiring more with the center’s help. The men are Super 8 employees, but their direct supervisor is Lea McDonald, who is their job coach and employed by the autism center.
“They’ve always been very supportive. We’re not in this by ourselves, for sure,” he said of the center.
Julie couldn’t be more pleased with the two and with Lea’s work with them. They never call in sick; they never just don’t show up. They are among her most dependable employees. Lea is able to redirect Chuckie and Clyde anytime things go off-course, such as the time an elevator was out of service and disrupted their routine.
When parents die
Chuckie, Clyde and Camie all need 24-hour care. None of them are able to live on their own; and care options for adults is limited.
“So many families are, ‘Oh my God what are we going to do?’” when the parents can no longer care for their adult children. “Our other two (grown children) are arguing over who ‘gets’ to take care of Camie,” Donna said.
Clyde’s mother, with whom he had lived and enjoyed shopping, died earlier this year. Julie said she and other staff were worried about how he would cope as he transitioned to live with friends of his mother’s.
“We thought having a death might throw him off, but no,” she said. She noticed he would watch more cartoons in the break room where previously he had watched more game shows or mysteries, and she wondered if that was because his mother didn’t like cartoons.
But one day as she walked by, she heard him talking to himself. “Don’t cry, it’s OK, don’t cry, it’s OK...”
Julie knows friends and family are not always able to care for those who need help, as when she employed another man with autism at a previous hotel. When his father died, he went to live with his sister.
“She didn’t care enough to make sure (he was OK). He would take out his frustration on the building,” Julie said, by breaking hotel property. She was also unable to make sure her brother arrived for work, and the hotel could not keep him employed.
“Unfortunately that man died from a lack of medical attention,” she said, citing diabetes.
Rachel said people with autism often have other health issues.
“A lot of these guys, especially if they’re not higher-functioning, they don’t know something’s wrong,” saying that adds to the burdens on the families.
Illinois Center for Autism
- Founded: 1977 with five students in a day school
- Number of current students: 120, ages 3 to 21
- Also serves: 40 adults in the adult day program, which includes Pasta Fare and Petals Remembered
- Other programs: “Face to Face” and “We Connect” offered to those not actively enrolled in the ICA schools
- Funding: local schools, who pay tuition for their students attending ICA schools, as well as the Department of Human Services, the Knights of Columbus, the mental health boards of area counties including Madison and St. Clair. The ICA also has other fund-raising events and applies for grants.
- For more information: Go to http://illinoiscenterforautism.org/ or call 618-398-7500