A Participatory Action Research using Photovoice to Explore Well-Being in Young Adults with Autism

• Main Author: Lam, Gary Yu Hin
• Format: Others
• Published: Scholar Commons 2018
• Subjects: autism spectrum disorder; community-based participatory research; critical theories; disability studies; post-school transition; qualitative research; good life; neurodiversity; Education; Other Education; Psychology
• Online Access: https://scholarcommons.usf.edu/etd/7322; https://scholarcommons.usf.edu/cgi/viewcontent.cgi?article=8519&context=etd

Young adults with autism transitioning from school to adulthood are commonly described as exhibiting poor outcomes. Although there has been research efforts measuring quality of life and life satisfaction in individuals with autism, these conceptualizations of well-being are still predominantly deficit-focused and based on normalizing ideals of the dominant culture. Only by incorporating individuals with autism’s perspectives and involving their meaningful participation in research can we better understand and promote well-being among individuals with autism. The present study aims to explore young adults with autism’s ideas about well-being. I conducted a Photovoice project using a participatory action research approach with 14 young adults with autism in a post-school transition program and their three instructors. Results revealed a broad sense of young adults with autism expressing their differences while having a strong desire to be connected with others. Specifically, three themes depicted young adults’ ideas of well-being in terms of (1) showing their self-expression, understanding, and strengths as well as exhibiting personal growth and learning, (2) having close relationships with their family, friends, and animals, and (3) developing different ways of engagement and connections with the community and environment. The research process itself also supported their experiencing of self-expression and forming connections with other people, which were integral to their well-being. The young adults intended to use the project results to present their personhood in a positive manner and to promote better understanding of autism in society. I drew from critical disability studies to discuss the findings in relation to the academic literature and inform advocacy work at a broader sociocultural level. This study has implications for researchers to conduct research that is ethically appropriate and sensitive to the needs of the autism community. Practitioners working with transition-age youth with autism can also draw upon from this study to reflect on their relationships and engagement with these youth to better support their well-being.