What Matters Most? An Exploration of Quality of Life Through the Everyday Experiences of Autistic Young People and Adults

Merrington, H; Gibbs, V; Haas, K; Clark, T; Robinson, A; AlAnsari, M; Pellicano, E

What Matters Most? An Exploration of Quality of Life Through the Everyday Experiences of Autistic Young People and Adults

Merrington, H

Gibbs, V Haas, K Clark, T Robinson, A AlAnsari, M Pellicano, E

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Publisher:: MARY ANN LIEBERT, INC
Publication Type:: Journal Article
Citation:: Autism in Adulthood, 2024
Issue Date:: 2024-01-01

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Field	Value	Language
dc.contributor.author	Merrington, H https://orcid.org/0000-0003-1066-0558
dc.contributor.author	Gibbs, V
dc.contributor.author	Haas, K
dc.contributor.author	Clark, T
dc.contributor.author	Robinson, A
dc.contributor.author	AlAnsari, M
dc.contributor.author	Pellicano, E
dc.date.accessioned	2024-09-25T03:02:16Z
dc.date.available	2024-09-25T03:02:16Z
dc.date.issued	2024-01-01
dc.identifier.citation	Autism in Adulthood, 2024
dc.identifier.issn	2573-9581
dc.identifier.issn	2573-959X
dc.identifier.uri	http://hdl.handle.net/10453/180962
dc.description.abstract	Background: The quality of life (QoL) of Autistic people is consistently reported to be poor compared with the general population. Little is known, however, about how Autistic people experience QoL from their perspectives and the ways they would like it to be enhanced. This qualitative study, conducted in collaboration with Autistic people, sought to understand how Autistic young people and adults define a good life and what helps and hinders them from achieving a good QoL. Methods: We conducted semi-structured in-depth interviews with 34 Autistic adults and 14 Autistic adolescents about their everyday life experiences of different aspects of QoL, including physical health, sensory needs, mental health, money, home, transport, leisure, social connections, acceptance, and inclusion, being in charge of one's life and perceptions of the future. We coded transcripts in NVivo and analyzed them using reflexive thematic analysis. Results: We identified four themes: two themes that described what a good QoL meant for our participants along with aspects of their lives that facilitated a good QoL: “feeling good” and “being myself in the world”; and two themes that described barriers to achieving a good QoL: “exhaustion and overwhelm” and “negative experiences shape perceptions.” Discussion: These findings highlight the need to consider Autistic people's QoL within the context of their everyday realities. Enhancing QoL will only be achieved through focusing on these realities and through the provision of adaptations and supports to create more inclusive environments.
dc.language	English
dc.publisher	MARY ANN LIEBERT, INC
dc.relation.ispartof	Autism in Adulthood
dc.relation.isbasedon	10.1089/aut.2023.0127
dc.rights	info:eu-repo/semantics/closedAccess
dc.subject.classification	44 Human society
dc.subject.classification	52 Psychology
dc.title	What Matters Most? An Exploration of Quality of Life Through the Everyday Experiences of Autistic Young People and Adults
dc.type	Journal Article
pubs.organisational-group	University of Technology Sydney
pubs.organisational-group	University of Technology Sydney/Faculty of Health
pubs.organisational-group	University of Technology Sydney/Faculty of Health/School of Public Health
utslib.copyright.status	closed_access	*
dc.date.updated	2024-09-25T03:02:14Z
pubs.publication-status	Published

Abstract:

Background: The quality of life (QoL) of Autistic people is consistently reported to be poor compared with the general population. Little is known, however, about how Autistic people experience QoL from their perspectives and the ways they would like it to be enhanced. This qualitative study, conducted in collaboration with Autistic people, sought to understand how Autistic young people and adults define a good life and what helps and hinders them from achieving a good QoL. Methods: We conducted semi-structured in-depth interviews with 34 Autistic adults and 14 Autistic adolescents about their everyday life experiences of different aspects of QoL, including physical health, sensory needs, mental health, money, home, transport, leisure, social connections, acceptance, and inclusion, being in charge of one's life and perceptions of the future. We coded transcripts in NVivo and analyzed them using reflexive thematic analysis. Results: We identified four themes: two themes that described what a good QoL meant for our participants along with aspects of their lives that facilitated a good QoL: “feeling good” and “being myself in the world”; and two themes that described barriers to achieving a good QoL: “exhaustion and overwhelm” and “negative experiences shape perceptions.” Discussion: These findings highlight the need to consider Autistic people's QoL within the context of their everyday realities. Enhancing QoL will only be achieved through focusing on these realities and through the provision of adaptations and supports to create more inclusive environments.

Please use this identifier to cite or link to this item:

http://hdl.handle.net/10453/180962