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When Autistic Children Are Children No More

Three local families confront the looming social crisis.

(page 4 of 4)

A dance and exercise class for young autistic adults in Broadview
A dance and exercise class for young autistic adults in Broadview

One day in June 2011, Jane Gallery’s phone rang. The man on the other end introduced himself as Terry Kline. He had two autistic grandchildren who lived in Wheaton, he explained, and he had heard about Our Place. But it was an hour’s drive away. Did she know of anything similar in the western suburbs?

Gallery didn’t. But she issued Kline an invitation: Come to Wilmette and she would teach him what she had learned.

He jumped at the chance. Kline, 64, the retired CEO of a container manufacturer, is completely enamored of his grandchildren, Emma, 13, and Jack, 9. Emma was diagnosed with autism at 3, just as her mother learned she was pregnant with Jack. Emma was an aggressive toddler, but she has made great strides at Clare Woods Academy, a school for special-needs children in Bartlett. Jack is higher functioning.

After one particularly trying day, their mother, Sarah Donnelly, made a confession at her kitchen table that swiftly knocked Kline and his wife, Ginny, out of their retirement comfort zone. “It was one of those 24/7 days, and Sarah just looked at us and said, ‘I don’t know what we’re going to do when Emma turns 22 and ages out of services,’ ” remembers Kline. As a CEO, he was used to having answers. In this moment, he had nothing to say.

The Klines were determined to find a solution, and they wanted to give themselves a decade head start. “We visited all kinds of places and came to the conclusion that no one was talking about what was going on with [autistic] adults,” Kline says. “There are programs in DuPage County that have a recreational focus, so they fill gaps of time with outings and field trips, and they do fine programs. But we wished there was something more meaningful.”

A graph showing the increasing number of autistic children hitting adulthood
A LOOMING TSUNAMI: The number of autistic children hitting adulthood has zoomed over the past decade—and the wave will only grow in the next.  NOTES: Data do not include children who were misdiagnosed, dropped out of school, or attended private programs. Therefore, the total number of autistic children in the U.S. turning 18 in any given year is higher than these numbers indicate. Numbers past 2011 are projections. SOURCES: U.S. Department of Education; Chicago estimates

“There aren’t many choices,” agrees Donnelly. “All we want are choices.”

That’s when Kline called Gallery. After her invitation, he made the trek to Wilmette nearly a dozen times to observe her in action. During his visits, Gallery warned him about the challenges that lay ahead if he wanted to open his own program. The myriad difficulties with securing public financing. (She advised him to adopt a private model.) The issue of finding permanent staff who are reliable. (A revolving door of part-timers is not optimal for autistic people, who find change difficult.) The problem of tracking down disabled adults once they age out of transitional programs. (“They drop out of sight,” says Gallery.)

Kline was undaunted. “People have said to me, ‘Why would you start a program at this [slow economic] time?’ ” he says. “I say, ‘The need is there.’ ”

And so last October, in the basement of a Presbyterian church in Wheaton, the nonprofit Connection of Friends opened its doors to 22 autistic and other special-needs young adults from several western suburbs. Its calendar recalls that of Our Place, with group conversation practice, guided exercise, lunch, art, music therapy, and community work. Volunteers come in to teach yoga and gardening. A low-lit quiet room with lava lamps and hand-sewn beanbag pillows offers a space where participants can go to relax if they feel anxious or angry or if they sense a seizure coming on.

Unfortunately, the amount paid by the families of those participants ($8 an hour) covers only a third of Connection of Friends’ expenses. The rest of its budget comes from foundation grants and private donations. So far, the Klines have poured in a considerable sum (Terry Kline declines to specify how much) to get the program up and running. They are planning three fundraisers this year to help bridge the gap.

When asked his ultimate goal for his grandchildren, Kline says that, quite simply, he wants them to have a place where they can make friends who understand their needs and struggles. Where they forge bonds that last after the organizers turn off the lights for the night. Maybe Emma or Jack could, one day, meet someone who would be a nice candidate for a roommate. Because the inevitable truth we all face—whether disabled or not—is that our parents (and our grandparents) won’t be around to take care of us forever.

“What makes a good life for anybody?” asks Jane Gallery. “Doing meaningful work, being engaged in their community, and making friends. We all want, and need, to have friends. I wanted to create an environment where my son would make friends. And he has. That’s why he is so happy now.”

Back on the North Shore, Frank Craven and the other members of the food pantry volunteer crew break down empty boxes, tidy up, and make their way to the van that will take them back to Our Place. Before Gallery switches off the light, she points out that the cans of peas are perfectly spaced.

* * *


Five key resources for autistic adults or their guardians

ACCESS LIVING: The disability rights group can help autistic adults find community housing in Chicago and provides support for independent living. accessliving.org, 312-640-2100

THE ARC OF ILLINOIS: A nonprofit advocacy organization, it gives advice on navigating the state PUNS list and more. thearcofil.org, 815-464-1832

THE AUTISM PROGRAM OF ILLINOIS: This state-funded program maintains an online guide to financial and legal issues that autistic adults commonly face. theautismprogram.org, 217-525-8332

AUTISM SPEAKS: The nation’s largest autism advocacy organization hosts regular web chats for affected adults and their families. autismspeaks.org, 888-288-4762

EASTER SEALS METROPOLITAN CHICAGO: The charity’s local branch manages a vocational training program for adults with special needs; it offers free dental care to disabled adults, too. chicago.easterseals.com, 800-221-6827


Photography: Chris Lake


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