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

Abstract

Past research has largely focused on the negative aspects of well-being of autistic young adults during the post-school transition. Research that meaningfully includes autistic individuals and captures their perspectives of positive well-being is essential for stakeholders to better understand how to provide services that respond to the needs and wants of the autistic community. In the current study, 14 autistic young adults in a post-school transition program participated in a Photovoice project and used photos to express their ideas about well-being. A participatory action research approach was used to support participants’ active engagement in the research processes and to encourage meaningful expression of their first-person perspectives. Results revealed an account of well-being reflecting expressions of individuality and growth, the significance of having close relationships, and a sense of connection with the community. This study has implications for research and practice that promotes well-being among the autistic community using approaches that are ethically informed and inclusive of autistic voices. Lay 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.

Autistic Self-Advocacy and the Neurodiversity Movement: Implications for Autism Early Intervention Research and Practice

“…In the UK there is now an increased understanding amongst researchers and funding bodies of community priorities (e.g., James Lind Alliance, 2016) and more meaningful involvement of autistic people in research (Pellicano et al, 2014;Fletcher-Watson et al, 2019). More neurodivergent/autistic people are leading academic discourse (e.g., Chapman, 2020;Kapp, 2020) and empirical studies (e.g., Belcher et al, 2019;Buckle et al, 2020) and there is a greater emphasis on participatory and action research models with autistic viewpoints and experiences at the center (e.g., Crane et al, 2019;Lam et al, 2020). These developments have cast light on the need for autism researchers to re-align their priorities and rethink some of the ways in which they work, thereby slowly changing the emphasis and tone of research.…”

A capabilities approach to understanding and supporting autistic adulthood

“…Autistic people are willing to meet halfway” 213 Other species Being able to live in relation to the natural world Autistic adults intensely value their relationship to the natural world 238 , 239 Access and support services are key to supporting this connection In a study using photovoice methodology, an autistic participant wrote a poem expressing her love of flowers she walked past every day: “Blue and blooming every which way, Blown in the breeze each and every day. I walk past you morning and afternoon, You remind me to stay strong and always stay in bloom” 238 Play Being able to laugh, play and enjoy recreational activities Greater social acceptance is required of autistic people’s passions and interests Harnessing autistic interests in other facets of life, especially in education and work, is important It is also important to ensure recreational activities are accessible to autistic people. In one study, some autistic participants pointed out that advantages or disadvantages were in the eye of the beholder: “Why is obsession bad and the ability to focus on something that you like [good].…”

A School-Based Approach to Building Resilience and Mental Health Among Adolescents on the Autism Spectrum: A Longitudinal Mixed Methods Study

“…Young adolescents on the autism spectrum experience significant adversity that requires a resilience process (Shochet et al, 2016). Research exploring the use of strength-based programs to promote wellbeing and prevent depression in adolescents on the spectrum by building their resilience is in its infancy (for promising work in this area see Groden et al, 2011;Lam et al, 2020). School-based depression prevention programs represent a gold standard of intervention as they are affordable, accessible, sustainable, and have been supported empirically (Corrieri et al, 2014).…”