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

This publication is included in the Autistic Autism Scholarship Project. one author of this publication is identified as autistic in the project.

About the autistic author marker

Kuzminski, R., Bölte, S., Lawson, W., Falkmer, M., Black, M. H., Girdler, S., & Milbourn, B. (2024). A Coproduced Exploration of Factors Influential to Quality of Life from the Perspective of Autistic Adults. Autism in Adulthood, 7(5), 594-611. https://doi.org/10.1089/aut.2023.0091

Publication date: 8 Nov 2024 Added to AutiHub: 6 Jul 2026 Type: Article Article language: English

This publication is integrated into AutiHub through:

Authors

Publication authors
7
Publication authors identified as autistic
1 / 7 (14.3%)

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.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 2 Oct 2026 14:02.

Cited references
78
With a DOI
65
Without a DOI, from raw bibliography text
13
12 / 78 (15.4%) cited references include at least one author identified as autistic.
References with data to complete
4 / 78 (5.1%)
References with detected author names
77 / 78 (98.7%)
Without detected author names
1
Without a structured title
3
Without a stable identifier
10
References with raw author names still to review
0
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
262
From DOI or external metadata
262
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
121 / 262 (46.2%) names are linked to an author already present in AutiHub. 141 / 262 (53.8%) names are not yet linked.
Names linked to a person identified as autistic
26 / 262 (9.9%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 26 / 121 (21.5%). Distinct people identified as autistic: 18 / 226 (8.0%).
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