Working on the Going Home Media Campaign this morning then heading to Joliet to discuss staff wages and benefits with other advocates.
When Autistic Children Are Children No More
Three local families confront the looming social crisis.
By Cassie Walker Burke
(page 1 of 4)
Lunchtime at Our Place
The peas must be sorted. On a recent Friday morning, several 20-something volunteers buzz around a North Shore basement that houses a food pantry for the needy. Pouya Bagherian, an outgoing young man who is prone to mistakenly throwing valuables into the trash, goes through bags of donations. Jason Kaplan, a quiet type who is most comfortable plugged into his iPod, checks each can of peas to make sure it has no puncture marks. And Frank Craven, who is slight and wears thick-rimmed glasses, organizes the cans on a shelf so that the earliest expiration dates are in front.
These tasks require an enthusiasm for repetition that many people would find mind numbing. Not these three. Bagherian and Kaplan, both 26, are autistic; Craven, also 26, has a rare autism-like condition called Lowe syndrome. Coming here lets them build real-world skills such as organization and teamwork, plus earn the satisfaction of a job well done. Equally important, it gives them a reason to get up in the morning.
Jane Gallery and son Frank Craven at Wilmette’s Our Place program, which she founded
Many autistic adults have a hard time finding their place in the world. Less than half enroll in higher education or find work. (According to the Social Security Administration, only about 6 percent of adults with autism work full-time.) Many lack the skills to live alone. Those who cannot work generally qualify for monthly Social Security disability payments, which are too low to cover vocational coaches, therapeutic day programs, or other interventions that may help an autistic person reach a modicum of self-sufficiency. Meanwhile, the federal government does not require school systems to provide special education for students older than 18 (most states, including Illinois, have extended the requirement through age 21). “If you have a developmental disability like Frank, when you turn 22, you disappear,” says Craven’s mother, Jane Gallery, a 61-year-old Winnetka resident. “You fall off a cliff.”
Despite the countless news reports about the meteoric rise of autism-spectrum diagnoses (1 in 88 American children today vs. 1 in 150 in 2000) and the myriad books and websites about raising youngsters who have this developmental disorder, there is little discussion of or planning for what those kids are to do when they are no longer kids. An estimated 300,000 of them are expected to hit adulthood in the next decade (see “A Looming Tsunami”). Their fate is an increasingly urgent social problem, especially in Illinois, where the state budget is under immense pressure. “I’m very concerned,” says Kevin Casey, appointed by Governor Quinn in 2011 to overhaul the state’s Division of Developmental Disabilities. “There are not enough services for everyone. If we don’t get the pension crisis solved, it’s going to get worse before it gets better.”
Frank Craven’s postteen experience illustrates the problem. After finishing high school at New Trier in 2005, where he took a mix of regular and individualized classes, he began attending a publicly funded life-skills and job preparation program run by a consortium of North Shore school systems. Four years later, when his 22nd birthday arrived, he got a Friday afternoon sendoff party with pizza and cupcakes. And then he went home. That next Monday was what parents sometimes refer to as as the Day the Bus Does Not Come.
His mother, Gallery, the former owner of a food store and catering company, and father, Buz Craven, a corporate tax attorney, spent the months leading up to their son’s birthday combing Chicago’s North Side and North Shore. Their goal: find a day program that would (a) get their son off the couch and keep him happy and engaged and (b) meet his physical needs, such as insulin monitoring. (Frank’s condition affects not only cognitive functioning but also metabolism, muscle development, and vision.)
The couple found very few programs that met the first requirement and none that met both. One reason for the scarcity is that “research hasn’t focused on the needs of these adults, and it hasn’t focused on interventions [for them],” says Jennifer Gorski, a professor at the University of Illinois at Chicago who runs a local training center for the state-funded Autism Program of Illinois. Many existing day programs for autistic adults, parents charge, amount to little more than warehouses.
Afraid that Frank would languish in front of the television, gain weight, and grow more depressed by the day, Gallery finally threw up her hands and did the only thing she could think of. She started her own program. Called Our Place, it provides a range of constructive activities—such as organizing that food pantry—five days a week for some 50 adults with autism and other developmental disabilities.
Turns out that Gallery is in the vanguard of a pioneering group of parents and grandparents. Frustrated by the current options and more than a little worried about the future of their loved ones, they’re rolling up their sleeves and creating their own solutions. For example, Forest Park resident Debra Vines, a former hairstylist, is focused on building a community that will help get autistic adults out of hiding; retired CEO Terry Kline recently started a west suburban version of Our Place.
While they have a tough road ahead, says Katy Neas, a Washington, D.C.-based disability rights lobbyist for the charity Easter Seals, it is people like these who will ultimately upend the current system of care for developmentally disabled adults. “It is because of them that we are even as far along as a country as we are,” Neas says. “The dedication of these families to each other has made a world of difference.”
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PHOTOGRAPHY: CHRIS LAKE
This article appears in the March 2013 issue of Chicago magazine.
Tony Paulauski Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423