Snapshots of growing up: Youth with autism explore adulthood through Photovoice

Youth with autism spectrum disorder (ASD) experience significant challenges transitioning to adulthood and have the lowest rates of independence compared to other youth with special health care needs (YSHCN).  Communication and social challenges limit youth’s participation in future planning and compromise their quality of life.  We utilized a Photovoice methodology to assist youth with ASD in expressing their desires for the future and understand their perspectives about transitioning to adulthood.

Youth with ASD (n=11), age 18-25, were recruited from urban and rural counties in Missouri. The youth photographed their life experiences, attended an initial group introduction, two group photo-sharing and discussion sessions, a public exhibit of their photos, and an individual interview.  Data for analysis included 201 pages of session transcripts, 184 pictures, and 18 pages of observational notes.  We used thematic analysis to identify important topics and patterns in the data. 

Youth with ASD engaged in extensive dialogue in group sessions and individual interviews. They expressed many expectations and goals for their adult lives, which centered around three major themes: the meaning of adulthood; desire to live independently; and current and future employment goals.

Our findings provide greater insight into how youth perceive adulthood, what they want as adults, and the services they need for success. Through this study, we were able to demonstrate the utility of a new research methodology for YSHCN that significantly improves public health practice for these youth by facilitating empowerment and providing opportunities for participants to share their experiences, and define their health priorities.