Exploring Well-Being in Young Adults with Autism Using Photovoice

Background: Much of the literature has focused on the challenges faced young adults with autism during post-school transition. However, little is known about how this population defines a good life and what they desire for themselves. Research taking into considerations the perspectives of individuals with autism and recruiting their meaningful participation is essential for the autism community and different stakeholders to understand the wants and needs of this population (Pellicano, Dinsmore, & Charman, 2014).

Objectives: The current study used a participatory action research (PAR) approach to explore how young adults with autism perceive and define their own well-being during school-to-adulthood transition.

Methods:

This project took place within the context of a year-long community-based transition

program that aims to support post-school outcomes in young adults with autism. Thirteen young

adults with autism between 19 and 25 years of age volunteered to participate. All participants

had adequate verbal and communication abilities to participate in the project. This project took a

participatory action research (PAR) approach to support participants’ active participation and to

allow meaningful expression of their first-person perspectives. Specifically, the author

approached the group of young adults expressing an interest in using a photography-based

methodology, Photovoice (Wang & Burris, 1997), to explore how participants understand and

describe their own “well-being.” Throughout the research processes, participants provided input

into decisions about the research questions, design of activities, and their own level of

commitment to the project. After an initial training about the ethics and instructions of camera

use and photography, participants took pictures during their daily lives for two months to capture

and express their ideas about well-being. Weekly group discussions and individual interviews

were conducted to review participants’ photographs and discuss their views of well-being.

Researcher and participants conducted a thematic analysis to identify themes and patterns from

the photographs and discussions. On-going data analysis and feedback from the participants are

still in progress.

Results:

Preliminary findings suggested an overarching theme of “connections” with family,

friends, and animals. Specifically, participants displayed a sense of connectedness with their

family members through their everyday encounters with them. Through the photo-taking

activities, participants acknowledged the opportunities to meet up with current friends and

mentors and to review past friendships in adolescence. Citing their stories with pets, stray

animals, and cartoon characters, participants also expressed their love of animals and how much

they enjoyed caring for them as they found them loyal, respectful, and non-judgmental. Lastly,

participants identified action plans to help the local community understand the perspectives of

people with autism, including presentations to parents and other stakeholders, photo exhibitions,

and advocacy campaigns.

Conclusions:

Findings from this Photovoice project reveal an autism-sensitive conceptualization

of well-being informed by the participants’ active participation and multimodal input (visual,

verbal, and written). Results help identify resources and barriers in community settings that

could improve well-being in young adults with autism during post-school transition. Practical

strategies for future research to encourage meaningful participation of the autism community will

be discussed.