Self-Determination and Quality of Life in Young Adults with Autism Spectrum Disorders

Background: Autism Spectrum Disorder (ASD) is a lifespan diagnosis impacting adulthood opportunities in the community. The vast majority of adults with ASD face significant obstacles as they attempt to transition their way into college, work, community, and independent living (Hendricks & Wehman, 2009). Self-determination (SD), which refers to the “volitional actions that enable one to act as the primary causal agent in one’s life and to maintain or improve one’s quality of life” (Wehmeyer, 2005, p. 177), has been associated with more positive adult outcomes (Wehmeyer & Palmer, 2003). As such, SD is best understood within the context of a person’s overall quality of life (QoL). The constructs of SD and QoL are often investigated separately, yet they are inextricably linked. Only two studies have examined their association directly (Wehmeyer & Scwartz, 1998; Lachapelle et al., 2005). Lachapelle et al. found that the essential characteristics of SD (autonomy, self-regulation, self-realization, and psychological empowerment) were related to membership in the high QoL group for individuals with mild intellectual disabilities.  

Objectives: To better understand the relation between SD and QoL for young adults with ASD using the Quality of Life Questionnaire (QOL-Q; Schalock & Keith, 1993), the Arc’s Self-Determination Scale (SDS; Wehmeyer & Kelchner, 1995), and the AIR Self-Determination Scale (Air; Wolman et al., 1994).

Methods: Twenty-three young adults with high functioning ASD between 18 and 30 years old participated in the current study. Participants were administered the Raven’s Progressive Matrices (Raven, Raven & Court, 2004), the Wechsler Abbreviated Scales of Intelligence (WASI; Wechsler, 1999), the QOL-Q, SDS, and Air.

Results: Participants ranged from 18 to 29 years old (M  = 21.35, SD = 3.45) with verbal IQ (M = 109.74, SD = 15.214) and nonverbal IQ (M = 51.52, SD  = 4.39) scores within the average range. All participants met the diagnosis for an ASD based on the Social Communication Questionnaire and the Autism Diagnostic Observation Schedule. QoL was significantly associated with SD, as measured by the SDS total score (r = .43, p = .04), but not the Air total score (r = .33, p = .12). Overall, QoL was correlated with the SDS’ autonomy (r = .45, p = .03) and self-realization (r = .46, p = .02) scales, which include measures of social belonging and community integration and satisfaction. Additionally, opportunities to become self-determined at home and school, as measure by the Air, were significantly associated with autonomy (r = .51, p = .01) and self-realization (r = .43, p = .04) on the SDS, suggesting that greater opportunities to become self-determined might lead to better QoL.

Conclusions: These findings reflect a positive association between self-determined behaviour and increased life satisfaction and suggest a need to provide authentic SD opportunities for young adults with ASD. As such, QoL and SD together might be best viewed as a universal organizing concept to guide policy and practice in order to improve life conditions and to empower people with ASD to live the life that they desire. Implications for policy will be discussed.