Quality of life in adolescents and adults with autism spectrum disorder: Results from a nationwide Danish survey using self-reports and parental proxy-reports.
Always collect both self- and parent-reported quality of life—adolescents and adults with autism usually rate their lives a bit higher than parents do.
01Research in Context
What this study did
Ane and colleagues mailed a nationwide survey to every known adolescent and adult with autism in Denmark.
They asked each person to rate their own quality of life. They also asked a parent to rate it for them.
The team then looked at what else might shape life quality—sleep, behavior, housing, daytime activity, and other diagnoses.
What they found
Self-ratings were a little higher than parent ratings, but the gap was small.
Many things linked to quality of life—psychiatric conditions, sleep trouble, adaptive skills, maladaptive behavior, where the person lived, and what they did during the day.
Still, two people with the same profile could feel very different about life; individual variation was large.
How this fits with other research
Ding et al. (2017) saw the same pattern one year earlier in Icelandic children: kids with autism rated their lives higher than their parents did.
Schmidt et al. (2010) and Spriggs et al. (2015) found the same self-proxy gap in adults with intellectual disability. The direction is consistent—proxies usually score lower.
Delgado-Lobete et al. (2020) later built a free lifespan tool, the PAB-L, so you can keep tracking both views as clients age.
Why it matters
If you only ask the parent, you may under-sell the client’s own view. Ask both, every annual plan. When scores clash, use the client’s voice first, then probe why the parent sees it differently. This simple habit gives you a fuller picture and builds trust with the person you serve.
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02At a glance
03Original abstract
BACKGROUND: Quality of life (QoL) in individuals with autism spectrum disorder (ASD) is essential to investigate with regard to knowledge about factors of importance for QoL and concordance between self-reported and parental proxy-reported QoL. AIMS: This study investigated QoL in adolescents and adults with ASD using both self-reports and parental proxy-reports. METHODS: From a nationwide survey, 1738 individuals diagnosed with ASD in childhood, were included for this study. The individuals themselves and/or their parents completed the INICO-FEAPS scale. Concordance between self-reports and proxy-reports were examined, and factors associated with QoL were explored via linear regression models. RESULTS: Compared to proxy-reported QoL scores, self-reported QoL scores were significantly but only slightly higher and not in every QoL domain. Independent of respondent type it was found that psychiatric comorbidity, sleeping difficulty, intellectual disability, maladaptive behavior, adaptive functioning, autism symptomatology, main daytime activity and residence were associated with QoL. CONCLUSION: Proxy-reported QoL is different from self-reported QoL and should be considered as an alternative source of information. QoL might be enhanced when factors associated with QoL are improved. However, large variations in QoL were found for most factors, suggesting the need to involve the individuals with ASD and/or their families when improving their QoL.
Research in developmental disabilities, 2018 · doi:10.1016/j.ridd.2018.09.004