New survey will focus on helping adults with autism

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COLUMBIA - When Julie Donnelly had her son 45 years ago, she didn't even know what autism was. Now, it is her life's work.

"When he was very young they thought he was retarded. They told me nothing could be done, that he would never lead a functional life. They told me to put him in an institution."

Donnelly said she wouldn't do that. Instead, she kept him in her home and worked with him intensely. She went back to school to get her Ph.D. so she could better understand what he was going through and help others with autism.

Donnelly was the first person to teach any classes at MU about autism and started the MU master's degree program in autism. She went on to work in Columbia schools helping teachers learn more about autism and training them to help their students with an autism spectrum disorder (ASD).

Donnelly said her son and work have taught her a lot about what people with autism go through. She said one of the biggest struggles kids with ASD go through is transitioning into adulthood.

"Ten or fifteen years ago, the crisis issue was getting services to young children. We have made some inroads there and had some success," Donnelly said. "But now the crisis issue is transitioning. Those kids we were getting services are now grown up, and we haven't been thinking, 'Adults with autism may have totally different issues.'"

People with autism often struggle picking up on social cues, which can make interactions difficult. Many also have a hard time focusing on things in which they aren't interested.

According to Nancy Cheak-Zamora, a researcher and assistant professor in the MU School of Health Professions, less than 25 percent of adults with autism lead independent lives in adulthood. This means only one in four people with autism secures employment, lives independently, and has adequate social networks.

"Once somebody turns 18 or 20 they sort of are forgotten by the system," Cheak-Zamora said. "We want to make sure we are trying to address their needs at every point along the way."

Cheak-Zamora received a $500,000 Autism Research Program Idea Development Award last month to continue her research trying help young adults transition into full independence.

Cheak-Zamora says she will be conducting a study on about 600 different young adults ages 12 to 25 who have autism. She will use focus groups to identify what common challenges these young adults are going through when transitioning into being independent adults.

"We hope to make a survey from our research that can be used in a clinical setting. It will have questions that help doctors to evaluate how independent a young adult is with autism, and how the healthcare system can help them reach higher levels of independence as they transition into adulthood," Cheak-Zamora said.

The study will take 3 years to conduct.

Cheak-Zamora said she hopes the measurement tool she develops will help make the lives of children with autism and their families easier.

Despite the struggles people with autism often go through when securing their independence in adulthood, there are success stories, like Donnelly's son.

"Everyone was surprised when he graduated from high school. He went on to graduate from college and got two master's degrees."

Donnelly said her son now has a job, is married, and has two children.

Cheak-Zamora said she hopes her research will help more people with autism successfully transition into an independent adult life, much like Donnelly's son was able to do.