Aligning Perspectives: Autism Identity, Independence, Participation, and Quality of Life in Autistic Adolescents Through Self and Parental Reports

This study examines the alignment between self-reports and parental reports on adolescents’ autism identity, functional autonomy, social participation, and quality of life (QoL), providing insights into the relationships between these factors. Thirty dyads comprising adolescents aged 13 to 18 years and one of their parents participated in the study. Participants completed the Autism Identity Questionnaire, Daily Routine and Autonomy questionnaire, Child and Adolescent Scale of Participation-Youth, and the Pediatric Quality of Life Inventory. The findings indicated moderate agreement between self-reports and parental reports regarding autism identity, functional autonomy, and QoL. Fair agreement was found regarding social participation. Adolescents who reported higher levels of acceptance regarding their autism identity demonstrated greater autonomy and participation, which correlated with a higher QoL. Conversely, those with higher engulfment scores (feeling overwhelmed by the diagnosis) exhibited lower levels of independence, social participation, and emotional and social QoL. These findings suggest that fostering a positive autism identity may enhance autonomy and social participation while addressing feelings of engulfment could improve emotional and social outcomes.