"Different but connected": Participatory action research using Photovoice to explore well-being in autistic young adults

Autism. 2020 Jul;24(5):1246-1259. doi: 10.1177/1362361319898961. Epub 2020 Jan 22.

Abstract

Past research has mainly focused on autistic people's deficits and poor outcomes compared to other groups of people. Little is known about their positive life experiences, and how to support them to achieve a higher quality of life. It is important to include autistic individuals in research so that they can influence how their voices are represented in a meaningful way and how the research results will be useful to them. In this study, a university researcher collaborated with 14 autistic young adults in a post-school transition program to design and run the research, collect and analyze the data, and use the results to create a presentation to the community. Specifically, the participants took photos in daily life and discussed their ideas about what a good life means to them. Results showed that these young adults described themselves as uniquely and different, but they were eager to learn and adapt. They also valued their relationships with their families, friends, and animals around them, as well as the community at large. This research shows that autistic individuals have important perspectives to share and knowledge to contribute when they are given the opportunities to participate in different aspects of research. The findings will be useful in developing services and influencing policies that promote well-being among autistic adults.

Keywords: adults; autism spectrum disorders; participatory research; qualitative research; quality of life; transition.

MeSH terms

  • Autism Spectrum Disorder*
  • Autistic Disorder*
  • Community-Based Participatory Research
  • Health Services Research
  • Humans
  • Quality of Life
  • Young Adult