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Time to Change How We Measure Quality of Life and Well-Being in Autism: A Systematic Review.

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Title: Time to Change How We Measure Quality of Life and Well-Being in Autism: A Systematic Review.
Authors: Simpson, Kate1,2 (AUTHOR) k.simpson@griffith.edu.au, Paynter, Jessica2,3 (AUTHOR), Westerveld, Marleen2,4 (AUTHOR), van der Meer, Larah5 (AUTHOR), Patrick, Lee5 (AUTHOR), Hogg, Gabrielle6 (AUTHOR), Heussler, Helen7 (AUTHOR), Heyworth, Melanie8 (AUTHOR), Gable, Alison9 (AUTHOR), Chandran, Hem Sid6 (AUTHOR), Bowen, Rachael10 (AUTHOR), Adams, Dawn1,2 (AUTHOR)
Source: Review Journal of Autism & Developmental Disorders. Jun2026, Vol. 13 Issue 2, p337-352. 16p.
Subject Terms: *Quality of life, *Autism, *Evaluation methodology, *Evidence synthesis, *Community involvement, Participant observation, Well-being
Abstract: This review examines methods used to report on the QoL and/or well-being of autistic people. A search of four databases (June 2023) identified 256 studies that reported on the Qol and/or well-being of at least one autistic person. The quality of studies varied. Results were synthesised on who reported, who was reported on, how information was obtained including accommodations and community involvement. One-third used proxy informants, over 80% used generic measures of QoL and/or well-being, autistic people with intellectual impairment and communication disorders were underrepresented, one quarter included accommodations, and few studies included community involvement. Despite the growing research on QoL and well-being of autistic people, more accessible and inclusive research is required to understand autistic people's experience. [ABSTRACT FROM AUTHOR]
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Database: Education Research Complete
Description
Abstract:This review examines methods used to report on the QoL and/or well-being of autistic people. A search of four databases (June 2023) identified 256 studies that reported on the Qol and/or well-being of at least one autistic person. The quality of studies varied. Results were synthesised on who reported, who was reported on, how information was obtained including accommodations and community involvement. One-third used proxy informants, over 80% used generic measures of QoL and/or well-being, autistic people with intellectual impairment and communication disorders were underrepresented, one quarter included accommodations, and few studies included community involvement. Despite the growing research on QoL and well-being of autistic people, more accessible and inclusive research is required to understand autistic people's experience. [ABSTRACT FROM AUTHOR]
ISSN:21957177
DOI:10.1007/s40489-024-00440-7