Quality of Life Defined by Autistic People: A Thematic Analysis

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Crowley LaPoint, S., Kiernan, B., Heinly, J., Hector, B. L., Benevides, T. W., & Maddox, B. (2025). Quality of Life Defined by Autistic People: A Thematic Analysis. Autism in Adulthood. https://doi.org/10.1089/aut.2024.0180

Publication date: 19 Feb 2025 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
Publisher source (DOI) OpenAlex source

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Authors

Publication authors
6
Publication authors identified as autistic
1 / 6 (16.7%)
  1. Shannon Crowley LaPoint
  2. Bridgett Kiernan
  3. Julia Heinly
  1. Becca Lory Hector *
  2. Teal W. Benevides
  3. Brenna Maddox

Abstract

Background: Autistic adults experience significantly lower quality of life (QoL) than non-Autistic adults. Accordingly, the autism community has identified QoL as a critical outcome for intervention research and person-centered care. However, existing QoL measures, developed without Autistic input, are often inaccessible, vulnerable to neurotypical biases, and fail to comprehensively capture the nuances of QoL as experienced by Autistic people. Methods: Our Autistic-led research team completed semistructured interviews with 25 Autistic adults living in the United States. In the present study, we use reflexive thematic analysis to identify themes in Autistic adults’ perceptions of QoL, particularly as it relates to defining Autistic Quality of Life (AQoL) for this population. Results: Based on Autistic adults’ conceptualizations of QoL, we developed the following themes: (1) QoL is a complex construct, (2) satisfaction of “needs,” (3) life is worth living, (4) emotional and physical well-being, (5) relationships in all forms, and (6) self-determination. Subthemes include components of QoL that may be unique or more common to the Autistic experience, such as the importance of having access to sensory-friendly spaces or foods, sharing a connection with animals, and being accepted by society. Conclusion: Autistic adults shared what QoL means to them and endorsed the importance of components that are not captured by existing QoL measures created by and for non-Autistic people. Results of this study have the potential to inform a novel measure of AQoL that is directly based on Autistic experiences and is co-created with Autistic people. This is a critical need identified by the autism community, as it shapes individualized approaches to care and research.

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 11:54.

Cited references
50
With a DOI
44
Without a DOI, from raw bibliography text
5
10 / 50 (20.0%) cited references include at least one author identified as autistic.
References with data to complete
2 / 50 (4.0%)
References with detected author names
48 / 50 (96.0%)
Without detected author names
2
Without a structured title
2
Without a stable identifier
5
References with raw author names still to review
2
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
163
From DOI or external metadata
163
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
2
74 / 163 (45.4%) names are linked to an author already present in AutiHub. 89 / 163 (54.6%) names are not yet linked.
Names linked to a person identified as autistic
22 / 163 (13.5%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 22 / 74 (29.7%). Distinct people identified as autistic: 19 / 152 (12.5%).
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