Adults with Autism and Brain Injuries

Adults with Autism and Brain Injuries

Image courtesy of The Julie + Michael Tracy Family Foundation
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When faced with medical or developmental challenges, it helps to have aid from resources that offer support. And when those resources don’t exist, motivated parents create them. That’s the case with these two Chicago-based nonprofits.

By Megy Karydes

The Julie + Michael Tracy Family Foundation  |

Julie and Michael Tracy founded The Julie + Michael Tracy Family Foundation to help their son and other young adults with autism lead self-sustaining lives. The Tracys’ son John was diagnosed with autism when he was 2 years old. But, despite the diagnosis, he forged through childhood. By the time adolescence rolled around, that success splintered, and it became clear to the Tracys that John needed more than what two loving parents could provide on their own. Unfortunately, a place where John could get the necessary living, learning and therapeutic help did not exist. So they decided to create one.

Their vision is grand: to create a residential community where young adults with autism and developmental disorders will have the services and support they need, and where they will learn vocational skills so that they’re more employable.

Currently, about 80 percent of young adults with autism are living at home with their parents because they can’t live alone. Some 90 percent of those are unemployed or underemployed because they don’t have the skills needed to hold a job, according to Julie, who cites the results of data compiled by Paul Shattuck, PhD, a researcher whose work focuses on understanding services and related outcomes among youths with autism as they become adults. 

Through her foundation, Julie wants to improve the skills necessary for more independence.

Along with Rush University Medical Center’s Autism Assessment, Research, Treatment and Services Center (AARTS),the foundation is piloting a residential community, called Project 1212, housed in a 150-year-old brownstone in the Taylor Street neighborhood. This residence, which opened in June, includes four adult living units upstairs with a community gathering space downstairs. The gathering space is used for meet-ups with different groups for cooking classes and other social opportunities. For example, Wednesday nights might be movie nights, while classes on art or financial literacy might be offered on other nights. 

“We have been meeting twice a month since January at a popular neighborhood restaurant. Now that Project 1212 is open, for both residential living and meeting space, we will start our Autism Speaks funded cooking classes as well as additional meet-ups and classes in this newly renovated space,” Julie says.

All of these activities, including the living situations, will be aided by at least one dedicated full-time staff member onsite at all times. That may change in the future, depending on the needs of the residents. 

We [know] we [need] to create opportunities for these young adults to learn. Currently, we are taking applications and reviewing potential candidates with the Rush Autism Assessment, Research, Treatment and Services Center. We anticipate serving up to four young adults who can benefit from living in an exciting urban environment, close to public transportation and all the amenities a city like Chicago has to offer.” 

Brain Injury Association of Illinois  |

A little more than 34 years ago, individuals who wanted to improve the quality of life for patients who had sustained brain injuries as well as their family members founded the Brain Injury Association of America. That initial gathering helped to spur similar chapters around the country, including the Brain Injury Association of Illinois (BIA of IL), a subsidiary of the national Brain Injury Association.

“Anytime, anyplace, anywhere,” says Philicia Deckard, executive director of BIA of IL, referring to when and where a person can sustain a brain injury.

The association offers support groups throughout the state that are open to anyone including caregivers. “The best thing about the support groups and our educational conferences is that people are very willing to help,” Deckard says. “They’re happy to share tips they’ve picked up along the way.

“Oftentimes, someone who has sustained a brain injury completes rehab and then goes home,” she says. “They ask ‘what’s next?’ We do everything from [helping to] increase public awareness of brain injuries to advocacy, educational conferences, support groups and a week-long camp in June.”

With therapeutic activities and access to physical, occupational and speech therapists, camps—like the one mentioned—are popular with young children and adults. The association provides many levels of support since each brain injury is different. The BIA of IL also offers injury-prevention programs for students and the community.

“We want people to know we’re here for them as a resource and happy to help whether it’s right after rehab, a couple of months later or years later,” Deckard says. “Brain injury changes your life forever.”

 Originally published in the Summer/Fall 2014 print edition