A systematic review of quality of life of adults on the autism spectrum.
Generic quality-of-life surveys flag problems in autistic adults, yet we still lack an autism-specific tool.
01Research in Context
What this study did
Davidovitch et al. (2018) hunted for papers that asked autistic adults how they feel about life. They found 14 studies using ready-made quality-of-life surveys.
None of the surveys were built for autism. The team wanted to know if these generic tools hide or twist autistic voices.
What they found
Every study showed the same sad story. Autistic adults scored lower on life satisfaction than non-autistic adults.
No study offered a survey designed for autism. The authors warn that current scores may reflect test bias, not true life quality.
How this fits with other research
Garagozzo et al. (2024) later pooled 10 studies plus new elderly data. Their meta-analysis confirms the gap is large and stays large with age. This 2024 paper now supersedes the 2018 review by giving the first solid number to the problem.
Greene et al. (2019) tracked the same adults over time. They found poor sleep, not autism traits, drives later drops in life satisfaction. This extends the 2018 picture by pointing to a treatable cause.
Thomas et al. (2021) ran a small vocational program. Adults filled out the same generic WHOQOL-BREF before and after. Scores went up, showing the tool can detect change even if it is not autism-specific. This softens the 2018 worry that generic scales always mislead.
Why it matters
You probably use WHOQOL-BREF or SF-36 right now. Keep using them, but add sleep questions and track changes within each person. Push funders to back autism-specific tools so we stop guessing what low scores mean.
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02At a glance
03Original abstract
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.
Autism : the international journal of research and practice, 2018 · doi:10.1177/1362361317714988