Autism identity in young adults and the relationships with participation, quality of life, and well-being

Abstract

BackgroundAutism presents self-identity challenges across the lifespan. Like “illness identity,” the degree to which a person integrates chronic illness into their self-identity, autism identity entails unique issues following diagnosis. Accepting the diagnosis allows better coping with its challenges and psychological, social, and physical functioning. However, knowledge of autism identity’s relationship with social participation in environments such as home, school, and community, quality of life (QoL), and personal well-being is limited. This study aimed to present an autism-identity profile of young adults and assess those relationships. MethodThis cross-sectional study included 42 autistic adults (18–25 years; M = 19.62, SD = 1.1) recruited from a postsecondary training program. All completed an Illness Identity Questionnaire adapted for autism, Child and Adolescent Scale of Participation, QoL Questionnaire, and Personal Well-Being Index. We calculated autism-identity profiles using descriptive statistics and examined relationships between self-reported autism-identity perceptions and participation, QoL, and well-being using Pearson’s correlations and stepwise linear regressions. ResultsThe participants reported significantly higher positive than negative autism-identity feelings, t(41) = 6.17, p < .001, d = .95. Higher positive autism-identity perception significantly correlated with higher reported participation (r = .44, p < .01) and QoL (r = .36, p < .05). Higher engulfment feelings (i.e., feeling that autism overwhelms the individual’s identity) significantly predicted lower social participation and well-being. ConclusionsAlthough natural development and social and educational environments affect identity and self-perception, caregivers, educators, and support services should help autistic young adults adopt more positive and reduce negative feelings about their autism.