How Do Adults with Autism Fare? Study Will Shed Light

With the aid of a grant from Autism Speaks, University of Utah psychiatric researchers are going to provide some valuable insight to an understudied aspect of autism -- how it affects the lives of adults who have the disorder.

Media Contacts

Jul 14, 2010 3:58 PM

SALT LAKE CITY—Not nearly enough is known about how children with autism fare as they grow into adults – whether or to what degree they are employed, how well they do socially, and what kind of support services they need. But with the aid of a grant from Autism Speaks, University of Utah psychiatric researchers are going to provide some valuable insight to this understudied aspect of autism.

The three-year, $450,000 grant will allow researchers led William M. McMahon, M.D., professor and chairman of the U School of Medicine’s Department of Psychiatry, to begin a new study that focuses on the adult outcome of 241 children with autism who took part in a landmark 1980s study by the University of Utah and the University of California, Los Angeles. The study’s primary aim is to assess the current quality of life of those participants, born in 1960-1984. The study also will allow the researchers to examine gaps in support services for adults with autism and glean the records from the 1980s study for predictors of current outcome, according to McMahon.

“Some smaller studies have yielded helpful findings about the course of autism into adulthood,” McMahon says. “But what’s needed is a large, population-based sample to better understand the issue. With the Autism Speaks grant, we can start to provide more information for this area of need.”
Prior grants from the Utah Autism Foundation and the University of Utah Research Foundation provided seed money for McMahon and his colleagues to carry out two pilot studies. One of those studies found that 4 percent of the 241 children in the original study had died – a rate 50 times higher than the general Utah population. A second study of 41 adults from the 1980s group found they had a better social outcome and quality of life than participants in other studies.

With the new grant and study, McMahon, Megan Farley, Ph.D., and other colleagues, including Judith S. Miller, Ph.D., associate professor of psychiatry, and Judith P. Zimmerman, Ph.D., research assistant professor of psychiatry, hope undertake a full assessment of the complete sample of people identified 20 years ago. The results of this study also will be integrated with ongoing genetic studies of autism spectrum disorder in Utah. The U’s Autism Research Program has played an important role in the international Autism Genome Project, which has linked a number of multiple rare genetic mutations and common gene variations to autism. Utahns with autism who have participated in these studies have contributed to the growing body of knowledge in this area. Along with genetic factors, researchers also believe environmental factors have a role in the disorder as well.

To mark the start of the new project, McMahon and Farley, will give a presentation this Friday, July 16, from 6:30 p.m. to 8 p.m. at the Carmen B. Pingree Center, 780 S. Guardsman Way. They’ll talk about the new study and give an update on adult autism research at the U of U. The evening also will include presentations by Carmen Pingree on her experiences and on financial planning for adults with autism and their families by Bret Hortin, CLU, CASL.

The following day, Saturday, July 17, the U’s Autism Research Group will hold a barbecue and picnic for the original participants of the 1980s study. The gathering will be a chance for the participants from that earlier study to learn more about the upcoming one with the Autism Speaks grant.“We hope we can locate and learn from all of the families who participated in the UCLA-University of Utah Autism studies from 20 years ago,” McMahon said.  “They can help us discover much that is currently unknown  about the medical, social and occupational aspects of adult development for children with autism.  Our findings may guide families, social policy, service delivery, and scientific focus for the country.”

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Media Contacts

Anne Asman Department of Psychiatry

Phone: (801) 581-8019 Cell Phone: (801) 450-9191 Email: anne.asman@hsc.utah.edu

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