Results suggest both groups understand the importance of health-related independence and are motivated to achieve independence but lack skills and supports. Improved communication about experiences and goals between caregivers, adolescents, and the care team are needed. These findings can inform future interventions to better support adolescents' transition to adult health care.
Youth with autism spectrum disorder (ASD) experience significant challenges transitioning to adulthood, but we have few firsthand accounts of these issues due to youth’s limited participation in research. In this study, we utilized a qualitative methodology, Photovoice, to understand youth’s perspectives on becoming adults. We recruited 11 youth with ASD, aged 18 to 25, from urban and rural counties in Missouri. Youth described their experiences of becoming adults with pictures; attended group, individual, and discussion photo-sharing sessions; and exhibited their work publicly. This methodology facilitated dialogue and the collection of an array of data including 201 transcription pages and 184 pictures. Thematic analysis identified important topics and patterns. Youth’s discussions and photos captured difficulties transitioning out of school, socialization challenges, and their connection with animals. Five themes emerged: (a) difficulty transitioning into adulthood, (b) desires for and problems with relationship building, (c) feeling different from peers and family, (d) animals as a coping mechanism for negative feelings, and (e) animals as a source of companionship. This study is the first to elicit experiences of youth with ASD during the transition to adulthood and coping techniques. Although youth described many challenges, they showed resilience and used animals as a source of support and socialization.
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