A systematic review of quality of life of adults on the autism spectrum
Open accessAbstract
Autism spectrum disorder is associated with co-existing conditions that may adversely affect an individual’s quality of life. No systematic review of quality of life of adults on the autism spectrum has been conducted. Our objectives were as follows: (1) review the evidence about quality of life for adults on the autism spectrum; (2) critically appraise current practice in assessing quality of life of adults on the autism spectrum. We searched bibliographic databases and other literature to identify studies using a direct measure of quality of life of adults on the autism spectrum. Hand searching of reference lists, citation searching and personal communication with field experts were also undertaken. In total, 827 studies were identified; 14 were included. Only one quality of life measure designed for use with the general autism spectrum population was identified. Quality of life of adults on the autism spectrum is lower than that of typically developing adults, when measured with tools designed for the general population. There are no comprehensive autism spectrum disorder–specific quality of life measurement tools validated for use with representative samples of adults on the autism spectrum. There is a pressing need to develop robust measures of quality of life of autistic adults.
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To date there is no comprehensive ASD-specific quality of life assessment tool validated, and the tools used in the general population might not be the most adequate to assess quality of life in ASD.
“Note, however, that to date there is no comprehensive ASD-specific quality of life assessment tool validated and consequently, the tools used in the general population (i.e., WHO-QOL) might not be the most adequate to assess quality of life in ASD (and thus changes in quality of life after intervention) [42].”
From Behavioral effects of multiple-dose oxytocin treatment in autism: a randomized, placebo-controlled trial with long-term follow-up (2020) · cites this paper as [42]
Recent reviews stated that most individuals with ASD have poor quality of life or lower quality of life than typically developing adults.
“Importantly, recent reviews stated that most individuals with ASD have poor quality of life (note that most studies included children with ASD) [41] or lower quality of life than typically developing adults [42].”
From Behavioral effects of multiple-dose oxytocin treatment in autism: a randomized, placebo-controlled trial with long-term follow-up (2020) · cites this paper as [42]
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- Authors
- Ayres, M., Parr, J. R., Rodgers, J., Mason, D., Avery, L., & Flynn, D.
- Affiliations
- Newcastle University (GB)
- Corresponding author
- Parr, Jeremy R
- Venue
- Autism
- Publisher
- SAGE Publications
- Published
- 2017-08-12
- Volume
- 22
- Issue
- 7
- Pages
- 774-783
- ISSN
- 1362-3613 (ISSN-L)
- 1461-7005
- OpenAlex
- W2743496150
- Cited by
- 230
- References
- 31
- Citations by year
- 2026: 33 · 2025: 36 · 2024: 40 · 2023: 30 · 2022: 30 · 2021: 28 · 2020: 16 · 2019: 12 · 2018: 4 · 2017: 1
- FWCI
- 1.01
- Type
- journal article
- Language
- en
- Open access
- green
- research.tees.ac.uk
- Licence
- Locations
- Autism (publishedVersion)
- PubMed (publishedVersion)
- Northumbria Research Link (Northumbria University) (acceptedVersion)
- Teesside University Research Portal (Teesside University) (submittedVersion, cc-by-nc-nd)
- Newcastle University ePrints (Newcastle Univesity)
- Topics
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Down syndrome and intellectual disability research
- Keywords
- autism spectrum disorder, quality of life, autistic adults, quality of life assessment, quality of life assessment tools, comorbidities
- MeSH terms
- Autism Spectrum Disorder, Adult, Humans, Quality of Life
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