Child and Adult Factors Related to Quality of Life in Adults with Autism.
Philippa Moss, William Mandy, Patricia Howlin
PMID 28343343WHAT IT FOUND
Quality of life ratings for adults who could self-report, and for their families or care staff, were mostly near population averages.
Their own and caregiver views often disagreed, especially on social life.
Key findings
01Quality of life data were available for 52 adults with autism, 43 male and 9 female.
02For informant ratings, 89% scored within the average range of a population comparison sample for physical health, 78% for psychological well-being, 80% for social relationships, and 98% for environment.
03For the 20 adults with both self-report and informant data, self-ratings were generally higher, with significant differences for social relationships and overall quality of life.
STILL TO COME
How it was doneWhat they foundWhat it means for OTs
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What it does not show
Quality of life data were available for 52 of the 60 individuals in the original cohort. Non-responders had lower autism severity scores and better social outcome ratings than responders. Only 22 adults completed the self-report measure, and they had fewer autism symptoms and higher social outcome ratings than those who did not self-report. Informant ratings reflected caregivers' own perceptions of the adult's quality of life, not proxy reports of what the adult might say. The study did not measure environmental variables such as family factors, specific interventions, educational provision or social provision. There was a 3-5 year gap between some adult assessments and the quality of life data.
The easy way to misread this
Do not read the relatively good self-rated quality of life as applying to all adults with autism. Only 22 adults completed the self-report, and they had fewer autism symptoms and better social outcomes than those who did not.