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 conceptualised from the perspective of autistic adults.

Methods: A qualitative semi-structured interview methodology guided by an overarching co-production approach was used 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 co-produce this research. Co-producing this research included the steering group and autistic researcher in developing the methodology, the interview guide, and in the thematic analysis and naming of the themes; 29 autistic adults aged 18 – 55 who lived in Australia were interviewed.

Results: Co-produced thematic analysis identified five themes: Activities and routines; Relationships supports and socialisation; Mind and body; Personal experiences; and Environment. Participants described how subthemes within each theme both positively and 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 conceptualisations of QoL, the impact and importance of these factors may vary from non-autistic experiences. Some factors that may uniquely impact QoL for autistic adults were also identified.

Citation

Kuzminski, R., Bölte, S., Lawson, W. B., Black, M. H., Girdler, S., & Milbourn, B. (2024). A co-produced exploration of factors influential to quality of life from the perspective of autistic adults. Autism in Adulthood. doi.org/10.1089/aut.2023.0091