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 Wednesday 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.' "
The new study highlighted the need to provide daily living skills to adults with autism: A person's ability to take care of him or herself -- not IQ -- predicted a happier, more independent adult.
The public school system provides special education until a student graduates or reaches age 22. After that, adults can receive services through the state Division of Services for People with Disabilities, ranging from full-time residential care to job coaching. The state serves about 800 adults with autism -- though 100 will be lose services in July because of budget cuts passed during the Legislature.
With a waiting list of 1,500 people, private programs are starting to fill the gap.
Kate Andersen, president and founder of the Lehi-based Autism Journeys Treatment Center, said a number of adults who weren't diagnosed or treated as children are now seeking help with social skills and for anxiety and depression. For $150 an hour, adults can get counseling or learn basics like buying groceries, doing laundry and even telling white lies.
"They don't understand they can't roll their eyes at their boss," Andersen said.
-- Heather May
What's next?
Researchers now want to find the other 200 adults who were identified as autistic between 1960 and 1984 and took part in a 1980s study in Utah by the University of California School of Medicine in Los Angeles. The new study tracked only the 41 highest-functioning participants.
Other Utah researchers have applied for a grant from the Department of Defense to discover how common autism is among adults today, what their lives are like and what government services they use.
Utah has the third highest rate of autism among children, according to a prior study. "These kids are growing up," said Judith Zimmerman, coordinator of the Utah Registry of Autism and Developmental Disabilities, explaining the desire to study adults.
-- Heather May

