Merrington, Heidi;
Gibbs, Vicki;
Haas, Kaaren;
Clark, Trevor;
Robinson, Ainslie;
AlAnsari, Mustafa;
Pellicano, Elizabeth;
(2024)
What Matters Most? An Exploration of Quality of Life Through the Everyday Experiences of Autistic Young People and Adults.
Autism in Adulthood
10.1089/aut.2023.0127.
(In press).
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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.
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