In a study that researchers consider a glimmer of hope in unraveling the mysteries of autism, Utahns with the brain disorder seem to fare better through life than many of their counterparts elsewhere in similar studies.
A report released online Wednesday by the Journal of Autism Research shows that a follow-up study by University of Utah psychiatry researchers of 41 Utahns diagnosed with an autism disorder 20 years ago shows that they have generally been more independent and more social, and a few even showed increases in IQs.
Despite the narrow focus of the study and no clear reasons why, for parents with children diagnosed with the brain disorder now, it adds new data about how autistic kids fare as adults.
"It gives a lot of hope for younger people with autism and average-range IQs," said Megan A. Farley, lead author and a research associate in the Department of Psychiatry at the U. 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."
Drawing from a group of 241 children diagnosed with the brain disorder in the mid-1980s, Farley and fellow researchers tracked 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. An individual's overall social outcome was assigned to one of five categories: very good, good, fair, poor and very poor.
Researchers found that 24 percent of the participants had a very good social outcome; 24 percent had a good outcome; 34 percent had a fair outcome; and 17 percent were rated in the poor social-outcome category. No one's social outcome fell into the very poor category.
About half of the study participants were employed in full- 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's 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 percent to 30 percent having good outcomes, compared to the 50 percent 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."
Reasons why the group fared better, just like the reasons why a child gets the brain disorder, are unknown. But Farley said a likely factor in the Utah group faring better than most is the growth of in-home early intervention and training, as well as the strong family networks here.
The average age of participants in the original study was 7, while the average age in the follow-up study was 32. Participants in the current study had an average childhood non-verbal IQ of at least 70.
About half of the participants included in the 1983 and 1988 statewide survey by the U. and the University of California Los Angeles could not live or work independently. The majority still live with their parents, although many of them had a high level of independence in their daily activities, according to the report.
Social isolation is a serious problem for that group, as well, the report states, with 44 percent of them having never dated. In addition, 60 percent of the study participants, even some of those who had achieved independent living and working, were prone to anxiety and mood disorders and the constant worry about a social stigma attached to autism. Also, the IQ of eight participants declined since they first were evaluated 20 years ago.
Leeann Whiffen, the mother of a son once diagnosed as autistic and a spokeswoman for the Utah Autism Coalition, told the Deseret News on Wednesday that the study results provide "cautious hope" to many families struggling to care for children who have autism.
Whiffen said the higher scores for some of the Utah group could be directly related to early intervention, which she credits with completely reversing the disorder in her 8-year-old son.
During this past legislative session, Whiffen endorsed and allowed her son's name to be used on a bill, SB43, that would have made behavior and education training a benefit covered by private insurance companies. The bill was approved in the Senate, but died there. The bill also was amended so much that Whiffen and the coalition withdrew their support.
Early intervention could have been part of the success cited in the study, "if their families were able to afford outside help, or if they happened to receive quality state-funded early intervention free of overcrowded, watered-down programs and waiting lists" that most families face, she said. "The missing piece to this study is what type of intervention did these individuals receive, if any? I think this piece of information is crucial in underlining the results of the study."
Researchers will be further investigating that and several other implications the study raises.
The study's conclusions build a strong case as to why insurance coverage for autism diagnosis and treatment is so important, Whiffen said. "What if we could have nearly 50 percent in the very good social outcome without them needing any assistance to state services? What if an additional 40 percent reached the middle outcome, but many still went on to live independently?"
Other research shows — and many Utah families can attest — that the percentages having good social outcomes without ever needing state services is possible, she said. "This creates a very strong case for early intervention and the need to allocate more monies to our state programs and preschools."