Study finds large number of adults with autism in Utah have fulfilling lives

From the Salt Lake Tribune:

A new study shows a surprising percentage of Utah adults who were diagnosed as autistic as children are leading what researchers call fulfilling lives: About half of them have jobs, are largely independent and have at least some meaningful relationships.

And the LDS Church community may play a role in their success, researchers suggest.

"We wouldn't be surprised if a lot of what contributed to those folks' better outcomes is the unique social structures in Utah," said Megan Farley, research associate at the Utah Autism Research Program and lead author of the study, published online March 18 in Autism Research journal.

"While kids are still made fun of here and they face stigma ... there's this really strong network of multi generational support that are able to foster these kids' development," she said.

Still, about half of the adults in the study are on Medicaid, live with their parents and need a lot of help from family or social service agencies with jobs, relationships and personal care. A sizeable number have had trouble with the law or have other medical disorders, from anxiety and depression to trouble sleeping.

The study -- written by researchers at the University of Utah, Carmen B. Pingree Center for Children with Autism in Salt Lake City, McGill University in Canada, Los Angeles Medical School and Yale University School of Medicine -- offers a rare glimpse into the lives of adults with autism.

It examined the mental, social and day-to-day living skills of 41 Utahns, ages 22 to 46, who were diagnosed with autism between 1960 and 1984 and participated in an earlier 1980s study. All of them had IQs of 70 or above (the average is 100) at diagnosis, so they were considered higher functioning.

It's hard to say what the findings mean for children diagnosed today with autism, a disorder marked by unusual behaviors and difficulty communicating and interacting. Most Utah children who have been recently diagnosed also have IQs above 70. But they have better access to services, suggesting they would have even better outcomes.

All but six of the adults in the study were still considered autistic. About one-quarter regularly drove. Nearly a dozen were married, divorced, engaged or in long-term relationships; three had children.

In total, about half of the adults had "very good" or "good" outcomes -- better than found elsewhere. For example, a study in England found only 32 percent fell into those categories, Farley said.

That may be because of the limited number of adults studied. Or, as the authors write, it could be the close-knit LDS communities the participants grew up in and continue to live in. Nearly all were members of The Church of Jesus Christ of Latter-day Saints. Noting the highly social nature of LDS missionary work, the authors reported 10 served missions, either overseas, in the United States or at home.

"Inclusion of individuals with disabilities is a strong LDS cultural value," the study notes. "Families are often large, and in many cases a sibling's social circle extended to include the [child with autism.]"

The half of the adults with "fair" or "poor" outcomes had acquaintances or no friendships. A handful lived in group homes or a state facility. Almost half had never dated, and about half of their parents believed they'd like to.

About a third had run-ins with police for incidents ranging from trespassing to stalking peers in pursuit of friendships to observing children in public.

"In many cases they're very unhappy. It's heartbreaking," said Farley. "Some people that I interviewed ... said, 'I've been looking for a job for so long, I'm so tired of being rejected. I feel really demoralized.' "