Quality of Life Defined by Autistic People: A Thematic Analysis

Authors

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.

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