A Coproduced Exploration of Factors Influential to Quality of Life from the Perspective of Autistic Adults

Authors

Abstract

Purpose: Autistic adults reportedly experience poorer quality of life (QoL) than their non-autistic peers. However, many tools used to measure their QoL were not developed for autistic adults, but for the general population. It is possible that factors contributing to the QoL of autistic individuals could vary from that of the general population, meaning commonly used tools may inadequately capture the nuances of autistic QoL. It is, therefore, imperative that autistic QoL is comprehensively conceptualized from the perspective of autistic adults. Methods: We used a qualitative semi-structured interview methodology guided by an overarching coproduction approach to capture factors contributing to autistic QoL. A research team, including an autistic researcher and a steering group of five autistic adults, worked together throughout the entire research process. An additional autistic researcher provided consultation about how to authentically coproduce this research. Coproducing this research included the steering group and autistic researcher in developing the methodology, the interview guide, and the thematic analysis and naming of the themes. We interviewed 29 autistic adults aged 18-55 who lived in Australia. Results: Coproduced thematic analysis identified five themes: activities and routines; relationship supports and socialization; mind and body; personal experiences; and environment. Participants described how subthemes within each theme positively and/or negatively impacted their QoL. Examples of subthemes that may represent factors uniquely impacting QoL for autistic adults include understanding their self-identity, sensory experiences, and the impact of societal attitudes. Conclusion: While some elements identified by autistic adults also appear in non-autistic conceptualizations of QoL, the impact and importance of these factors may vary from non-autistic experiences. We also identified some factors that may uniquely impact QoL for autistic adults. Community Brief: These findings highlight the factors that health professionals should consider when working with autistic adults to enhance their QoL. These results can also inform the development of better assessments to measure autistic QoL.

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