Predictors of Self-Determination in Young Adults with Autism Spectrum Disorder

Background: Young adults with Autism Spectrum Disorder (YA-ASD) have the lowest rates of independence of all young adults. Self-determination, the ability to set and work toward goals, is a prerequisite to independence. Research shows a connection between self-determination, independence, and quality of life. Unfortunately, few studies have examined self-determination within the autism community and have identified which factors promote self-determination in YA-ASD.

Objectives: This study aimed to examine rates of self-determination and contributing factors to self-determination among YA-ASD.

Methods: Caregivers of YA-ASD were recruited from five Autism Treatment Network sites and associated organizations across the U.S. (n=479) to complete surveys about their YA-ASD’s transition experiences. Self-determination was examined using two components of the American Institutes for Research (AIR) self-determination assessment. The two components measured the young adults’ capacity to be self-determined and the young adults’ level of opportunity to be self-determined at home. Both component scores and the total score were used in all analyses.

Univariate analyses examined associations between self-determination and YA-ASD’s demographics, ASD severity, and individual caregiver and family-level variables. Linear regression analyses explored whether individual demographics, individual condition severity, or caregiver and family factors were associated with level of self-determination for YA-ASD.

Results: YA-ASD ranged in age from 16 to 25 years old (M = 18.5; SD = 2.2), while caregivers ranged in age from 21 to 72 years (M = 49.33; SD=7.068). The majority of YA-ASD were reported to have moderate ASD symptoms (57.4%) and good to excellent verbal skills (74%). Thirty-three percent of young adults had an intellectual disability. Approximately 20% of YA-ASD had paid employment and 18.6% volunteered. The vast majority of caregivers were the young adult’s mother (81%). Caregivers were more likely to be married (77%) and had a household income of $75,000 or more (52.4%).

YA-ASD’s self-determination total ranged from 12-60-points with a possible score of 60. Caregivers reported their YA-ASD as having moderate overall self-determination (x = 38; SD = 9.04). Component measures, young adults’ capacity and opportunities at home, ranged from the minimum score of 6 to the maximum score of 30 but had very different means. The mean for young adults’ capacity to be self-determined were low (x = 15.3; SD = 5.67) while the mean for caregiver-rated young adults’ opportunities at home was high (x = 23.1; SD = 4.59).

Barring severity, there were few significantly predictors of self-determination. Regression analyses indicated that YA-ASD’s intellectual disability status, symptom severity, verbal communication level, and self-care skills were strong predictors of lower self-determination, whereas demographic and family variables accounted for little variance.

Conclusions: Our findings show a dissociation in self-determination ratings, with a lower mean for YA-ASD capacity and a higher mean for caregiver-rated opportunities for YA-ASD. Additionally, we found significant disparities in self-determination for YA-ASD with increased symptom severity and communication difficulties. Additional research is needed to examine how to most effectively encourage YA-ASD to develop and work towards their goals in school, healthcare settings, and at home.