Item Understanding of Common Quality of Life Measures for use with Autistic Adults.
Kelly B Beck, Lauren A Terhorst, Carol M Greco and 3 others
PMID 37142903WHAT IT FOUND
Autistic adults understood and consistently answered the five-item Satisfaction With Life Scale.
The WHO quality-of-life measures were harder, especially sex life, medical treatment, transport, and two-week time references. Simplified disability versions helped, but social items still caused confusion.
Key findings
01The Satisfaction With Life Scale was understood and showed excellent test-retest stability.
02Participants had difficulty with several WHO quality-of-life items, especially sex life, medical treatment, and transport.
03The simplified disability versions improved understanding, but the social relationship domain remained problematic.
STILL TO COME
How it was doneWhat they foundWhat it means for OTs
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What it does not show
The sample was small: 22 young autistic adults, and only 8 completed cognitive interviews. All participants came from one postsecondary vocational facility, were aged 19 to 32, and lived in supported housing, so results may not apply to older autistic adults or people in other settings. The sample was 81.8% male and 95.5% Caucasian, and it excluded people with intellectual disability or low verbal IQ, so it does not represent the wider autistic adult population. The study tested understanding, internal consistency, and two-week stability, but not whether the measures capture what quality of life means for autistic adults. Participants often answered outside the two-week reference and switched between hometown and campus residence, which may affect how meaningful some WHOQoL scores are.
The easy way to misread this
Do not read these results as proof that the WHOQoL measures are valid for all autistic adults. The sample was only 22 young adults without intellectual disability, living at one vocational facility, and the study did not test whether the measures capture what quality of life means for autistic adults.