Twenty years after first being assessed in a long-term autism study, 41 Utah residents with the disorder had a higher social outcome than those in similar studies, University of Utah psychiatry researchers report (Autism Research, 2[2]:109-118).

Although the researchers can't yet explain why the follow-up study showed that the Utah group fared better overall in living independently, developing social relationships and, in some cases, even showing higher IQs than 20 years ago, the results offer hope for many with a childhood diagnosis of autism, according to Megan A. Farley, PhD, the study's first author and a research associate in the Department of Psychiatry at the University of Utah School of Medicine.

"This is an amazing group of people who, in many cases, did a lot more than their parents were told they would ever do," Farley commented of those who participated in the follow-up study. "This gives a lot of hope for younger people with autism and average-range IQs."

The researchers drew the follow-up study participants from an original group of 241 Utah residents with autism who took part in a University of Utah and University of California, Los Angeles (UCLA), study from 1984 to 1988. The average age of participants in the original study was 7 years, while the average age at the follow-up study was 32. Participants in the current study had an average childhood nonverbal IQ of at least 70.

For the follow-up study, the researchers assessed the participants' overall social outcome by their ability to maintain paid employment, the existence of meaningful social relationships, and their degree of independence in daily life. From these criteria, an individual's overall social outcome was assigned to one of five categories: very good, good, fair, poor and very poor.

"Very good" meant the person held paid employment without extra support to perform job duties, had important social relationships and had a high independence in daily life. "Good" indicated that the individual had a generally high level of independence at work and in daily life, requiring some extra support, and also had a friendship or some acquaintances.

"Fair" reflected the need for regular support at work or home, but the person did not have to live at a special residential facility. The participants in this category had acquaintances through special activities, but no particular friends. "Poor" showed the need for a high level of support, such as a residential living facility and planned daily activities for people with developmental disabilities. Those in this category had no friends outside their residential living arrangements. "Very poor" meant the individual required a high level of care in a hospital setting with no autonomy and had no friendships.

By these measures, the researchers found that 24% of the participants had a very good social outcome, 24% had a good outcome, 34% had a fair outcome and 17% were rated in the poor social outcome category. None of the participants had social outcomes that fell into the very poor category.

About half of the 41 study participants were employed in full-time or part-time competitive jobs. Six were living independently, including three who owned homes. Three were married with children, and one person also was newly engaged to be married. Eleven of the participants have driver licenses, and the same number had a higher IQ than when assessed 20 years earlier.

"Adults with autism haven't received the attention from researchers that children have, but the few studies that have been done on similar groups showed 15% to 30% having good outcomes, compared to the 50% in our study," Farley said. "One early Canadian study showed similar results to ours, but other studies have had fewer people living and working independently as adults."

Farley said she did not know why the Utah group fared better than those in other autism studies, but she thinks it may be related to early intervention to help children with the disorder and strong social and family networks in Utah.

The most important factor in whether study participants had a better living outcome was their degree of independence in daily activities -- being able to take care of themselves, hold employment, live on their own or at least semi-independently, and take part in meaningful social relationships, according to the researchers. Although IQ significantly influences social outcome, daily independence plays an even greater role in determining how well people with autism function, the researchers said.

Although encouraging, the follow-up study results also show autism's devastating toll. About half the participants could not live or work independently, and the majority lived with their parents, although many of them had a high level of independence in their daily activities. Social isolation is a serious problem as well -- 44% of the group has never dated. In addition, 60% of the study participants, even some of those who had achieved independent living and working, were prone to anxiety and mood disorders and worried about a social stigma attached to autism. The IQ of eight participants declined since they first were evaluated 20 years ago.

The 41 participants in the follow-up originally were identified through a statewide epidemiologic survey conducted between 1984 and 1988 by the University of Utah and UCLA. The goal of that study was to identify every person born with autism between 1960 and 1984 and who lived in Utah during the 4-year survey. The survey was one of the largest population-based autism studies in the world, meaning that it tried to assess the whole population of Utah residents with the disorder rather than a select group. By assessing participants from the original study, the follow-up gives a unique perspective on the long-term course of autism, according to Farley.

The long-term follow-up also will help researchers identify issues that affect the social outcomes of adults who were diagnosed with autism as children, providing information that can help determine services that will help these adults lead more fulfilling lives.

"Our current results have encouraged us to go further in following up the entire sample of 241 adults who were identified with autistic disorder in the 1980s," she said. "We now know that, with the help of the remaining adults and their families who are willing to give of their time and energy, we will be able to have a better understanding of the life course in autism. We're excited now to contact all of the families who participated in the original study."

Hilary Coon, PhD, research professor of psychiatry, was the senior study author, and William M. McMahon, MD, chairman of the School of Medicine Department of Psychiatry, was a member of the original study team and a coauthor on the current study as well.