Using Photovoice to Capture the Quality of Life of the Australian Autistic Community

Authors

Abstract

Background: Research suggests that autistic adults experience poorer quality of life (QoL) than their non-autistic peers. However, most research to date has examined QoL in autistic adults through a neurotypical lens. Qualitatively examining QoL factors from the perspectives of autistic individuals themselves is necessary to provide more accurate insights into the nature and measurement of QoL for autistic adults. Methods: We explored factors influencing QoL from the perspective of 15 autistic adults using a participatory photovoice methodology. Participants provided 289 photos capturing the factors influencing their QoL, discussing the meaning of these photos in focus groups and interviews. A steering group of four autistic adults worked in partnership with the research team through the project, co-producing the results. Results: A thematic analysis of photographs, focus groups, and interviews captured five themes: Activities, Environment, Emotions and Experiences, Individual Identity, and Needs. These themes intersected with one another, influencing other components of QoL. Within these themes and subthemes, autistic adults discussed factors such as passions, identity, and sensory experiences that impact their QoL. Conclusion: Using photovoice, autistic individuals captured factors influencing their QoL, illuminating the factors that could be included in QoL measurement tools to help measure autistic adults' QoL. Community Brief: These findings help us to understand the factors influencing autistic adults' QoL. Understanding these factors helps us to determine what factors should be represented and rated in measurement tools of QoL in autistic adults, enhancing the accuracy of these measurements.

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