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

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.

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.

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.

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.

Why is this an important issue?: Quality of life (QoL) is an important but underresearched outcome for autistic adults. Supports are often provided with the aim of improving QoL, but our understanding of QoL is based on understandings from non-autistic populations. The factors contributing to QoL in autistic adults might be different from non-autistic adults, and assessments used by health professionals to measure QoL may not accurately measure autistic QoL. Understanding the factors that support QoL for autistic adults is important for ensuring accurate assessment and for providing more effective support to enhance QoL for autistic individuals.What was the purpose of this study?: This study wanted to understand what factors influence autistic adults' QoL. It is the first step toward understanding autistic QoL, which could inform the measurement of autistic QoL.What did the researchers do?: The research involved in this study used a participatory approach, working with a steering group that included five autistic adults. An autistic researcher is also part of the research team, and a second autistic researcher provided advice about how to authentically coproduce the study. The steering group and research team developed an interview guide about QoL. We used it in interviews with 29 autistic adults aged 18-55 years. The research team and steering group analyzed the interviews to represent the perspectives of the participants. The research team and steering group developed the themes together.What were the results of the study?: We identified five themes summarizing the factors that influence autistic QoL: activities and routines; relationships supports and socialization; mind and body; personal experiences; and environment. Participants described how subthemes within each theme positively and negatively impacted their QoL. Some subthemes include understanding their self-identity, sensory experiences, socialization, relationships, health, and the impact of societal attitudes.How do these findings add to what is already known?: This research provides an in-depth understanding of the factors that influence autistic adults' QoL. Until now, there has been a limited understanding of these factors.What are the potential weaknesses of the study?: The participants in this study were generally highly educated, and most were diagnosed in adulthood. Only one participant reported having an intellectual disability, and all participants communicated verbally. This could mean that the results do not represent all factors important to the QoL of those with an intellectual disability or who use other forms of communication.How will these findings help autistic people now and in the future?: 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.