Autistic Adult Outcomes in Utah

A 20 year later follow-up study in Utah on individuals diagnosed with Autistic Disorder from DSM-III (more restrictive criteria) and a nonverbal (for people with limited verbal ability) or full scale IQ ≥ 70 as children, lead by Megan A. Farley, has produced some interesting results about quality of life and autistic development. The aims of the study were (quote from the study itself),

Our aims were to (1) define current function and service needs; (2) explore the feasibility of studying a larger statewide sample; and (3) examine relations among historical and current variables not reported in other recent outcome studies.

"Historical and current variables" meant things measured for the participants as children and adults, for example IQ and adaptive skills including daily living, social, and communication.

The study found that current daily living skills (including with support) were stronger predictor of outcome than childhood IQ, verbal ability, or other variables measured in childhood or adulthood.

The study also speculated that the strong community-centered culture of Utah might have played a role in why this group had better outcomes than autistic adults who participated in other similar studies. Again, from the original study ("the participant" is the autistic person participating in the study),

Another possible factor is the support of the LDS communities in which many participants grew up and continue to live. The church building that members attend is determined by their address; thus, children go to school, attend church activities, and reside in a neighborhood as a cohort. Inclusion of individuals with disabilities is a strong LDS cultural value. Parents attend services and activities with their neighbors, sharing joys and concerns about their families. Families are often large, and in many cases a sibling’s social circle extended to include the participant. Some participants had assistance finding work through these networks.

According to the lead researcher (source),

"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 said of those who participated in the follow-up study. "This gives a lot of hope for younger people with autism and average-range IQs."

"Outcome" in this study was defined mostly by employment, number and quality of social relationships, and residential situation. There has been some criticism of the use of these types of items as outcome measures, as they assume that all people value these things in their lives, or that these items correlate somehow to overall well-being, but that's perhaps a topic best left for another post.

More on topic to this post is what the University of Utah site says about the usefulness of studies such as these (source),

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.