Autism Identity in Young Adults and the Relationships with Participation, Quality of Life, and Well-Being

Abstract

BackgroundL Autism presents self-identity challenges across the lifespan. Like “illness identity,” the degree 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 participation, 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.

Method: This 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, Quality of Life Questionnaire, and Personal Well-Being Index. We calculated an autism-identity profile using descriptive statistics and examined relationships between self-reported autism-identity perceptions and participation, quality of life, and well-being using Pearson's correlations and stepwise linear regressions.

Results: Significant positive correlations were found between autism identity and participation (r = .44, p < .01) and QoL (r = .36, p < .05): The more positive autism-identity perception, the higher reported participation and QoL. Higher engulfment feelings correlated significantly with lower involvement in all environments and lower well-being. The more negatively participants perceived their autism, the less they reported feeling empowered, independent, and satisfied.

Conclusions: Although natural development and the social and educational environment 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.

Note:

Funding Information: None.

Declaration of Interests: The authors declare there are no conflicts of interest.

Ethical Approval Statement: After receiving ethical approval from the Institutional Ethics Committee at the University of Haifa (#274/19), the recruitment began by presenting the research description and aims to trainees participating in the national service program. Trainees who expressed interest signed informed consent forms and completed the questionnaires.

Keywords: Autism, identity, young adults, quality of life, well-being