Arc and Tracy Foundation Helping Adults with Autism
From today’s Chicago Tribune.
Goal: To help autistic young adults
Desperation often occupied the Glenview home of Julie and Michael Tracy when their son John was
growing up. Now that he’s a 21-year-old living on his own, a different type of desperation has settled in.
When John was a toddler he was diagnosed with autism, Julie Tracy said. Later, in adolescence, he
was diagnosed with a mental illness. For young adults with autism, there are few services and safety
nets, and there are even fewer for people who have an accompanying psychological disorder.
In 2012, the Tracy family created the Julie + Michael Tracy Family Foundation to raise awareness and
money for opportunities for adults with autism, particularly those with a mental illness. One goal of the
foundation is to help these young adults transition into independent living with a good job and top-notch
housing where they can continue to feel socially connected.
“I have a clinical background, and maybe that made it even harder for me,” said Julie Tracy, a speech
and language pathologist. “We just thought if we could support parents going through this, it wouldn’t have
to be such a nightmare.”
She said although early intervention is important for children with autism, some illnesses don’t become
apparent until later in life, and that’s why focusing more research on adults is key.
According to Paul Shat-tuck, an associate professor in the A.J. Drexel Autism Institute and Drexel
University School of Public Health, out of the roughly 11,000 studies on autism between 2000 and 2010,
about 23 focused on services for adults. And none of those examined the way race, ethnicity and even
poverty further complicated the outcomes of these adults.
Shattuck recently led two studies showing that many young adults with autism-spectrum disorders
face grim prospects for getting a job and finding suitable housing. Only about 21 percent of respondents
polled said they worked full time, and their average pay was $8.10 per hour.
“The typical life span (of an American) is 70 to 80 years, and by not studying young adults with autism-
spectrum disorders, we’re not understanding the typi- cal person with autism,” Shattuck said. “What
happens in adulthood is what impacts society most in terms of costs and policy.”
Tracy said that her son’s autism has manifested itself in different ways over time. At age 2, he lacked
the fine motor skills needed to connect his toy train cars and to feed himself. His behavior was also
unpredictable. Sometimes he could climb the ladder to his tree house; other times he couldn’t.
And yet, he was a smart, charming and articulate child, with exceptional language skills.
Tracy said that John always attended public school and was in mainstream classes. Until about the
fifth grade, he was on track to attend college. But in middle school his life changed dramatically. He
was teased and bullied severely, Tracy said. By his sophomore year of high school, he was exhibiting
dark and unpredictable behavior and was hospitalized multiple times.
“We were desperate, and many of the facilities just weren’t very good,” she said. “Once, for the whole
weekend while John was in the hospital, the one therapeutic activity he had was ‘Men’s Shaving Club.’
“And he was in another hospital that was so bad that we believed him when he said, ‘Mom, there are
ants on my toothbrush.’ It turned out he was actually hallucinating.”
The foundation ( jmtf.org ) recently sponsored a symposium on autism and mental health and has
raised money for Rush University Medical Center’s comprehensive Autism Assessment, Research,
Treatment and Services Program. Tracy said the program helped save her son’s life in the summer of
2011 when he was hospitalized at Rush with complications from mental illness.
“If I hadn’t seen it myself, I wouldn’t have believed you could die from mental illness,” Tracy said.
“John was in the intensive care unit for about week. He wore restraints for days and he was
hallucinating and slipping into a delirious coma. He was severely manic.”
Finally, doctors were able to stabilize him.
I asked Dr. Louis Kraus, Rush’s chief of child and adolescent psychiatry and the creator of the
hospital’s autism assessment program, how common it is for people with autism to also have some
form of mental illness. He said there are no exact numbers.
“That’s because it’s difficult to assess anxiety in an autistic child,” he said. “But we do know
without question that issues of anxiety and depression and attention-deficit hyperactivity disorder are
more common in autism- spectrum kids. There’s also a potential link in regards to bipolar disorder.”
He said what makes this more complicated is that too many physicians who treat autistic children,
adolescents or adults primarily focus on their autism.
“The psychiatrists and other professionals who would focus on the potential mental health issues
really don’t want to be burdened, for lack of a different term, by the complexity and added amount of
time that it takes to care for a child or adult with autism,” Kraus said.
He said without extra support and services, even higher-functioning autistic adults tend to fare poorly.
“You would expect this group to be doing something in school or in vocational programs, and yet two-
thirds of them are doing nothing,” Kraus said. “They’re sitting at home on couches all day.”
He said this is especially critical because an estimated 1 in 88 children has some form of autism. The
Rush program assesses teens and young adults and tries to develop vocational and educational options
to help them reach the highest level of their abilities.
To this end, the Tracy Foundation is renovating a four-bedroom Victorian home near the University of
Illinois at Chicago that will house adults with autism. It’s scheduled to open in the spring.
“We envision an urban solution for the kind of folks we’re trying to serve,” she said. “Our kids are not
going to drive. In order for them to be independent, they need access to public transportation.”
As for John Tracy, he’s doing well these days. He lives in Hyde Park at the Sonia Shankman Orthogenic
School, one of the oldest residential treatment schools in the country. He has independent outing privileges
and has learned how to take public transportation. I recently spoke to him after he’d taken the bus to Rush,
where he volunteers. He told me he wants to start a dog-walking and dog-grooming business.
“He’s taking a class (at the University of Illinois) for people with disabilities on how to write a business
plan,” Julie Tracy said. “It’s wonderful to see how he’s stabilized. We didn’t have a road map with John, but
we believe more can be done for these kids between the vulnerable ages of 14 and 22 to help them lead fuller lives.” firstname.lastname@example.org
Dawn Turner Trice
BETH ROONEY/PHOTO FOR THE TRIBUNE
Julie and Michael Tracy stand behind son John outside the home they are renovating for
adults with autism.
Tony Paulauski Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423