Quality of life of high-functioning children and youth with autism spectrum disorder and typically developing peers: Self- and proxy-reports.
High-functioning autistic kids rate their own lives higher than their parents do—collect both views.
01Research in Context
What this study did
Researchers asked high-functioning autistic kids and their parents how they felt about life. They also asked typical kids and parents the same questions.
Everyone filled out two short surveys. One measured overall quality of life. The other looked at social support and physical well-being.
What they found
Autistic children and parents both scored lower than the typical group. The gap was small but steady across areas.
Parents rated their own child's life lower than the child did. The biggest gaps showed up in social support and physical well-being.
How this fits with other research
Potvin et al. (2015) saw the same pattern two years earlier. They found a larger gap, but the direction matched: autistic kids scored lower.
Knüppel et al. (2018) extended the idea to teens and adults. Self-ratings stayed slightly higher than parent ratings, proving the mismatch lasts past childhood.
Kuhlthau et al. (2010) showed that behavior problems, not autism itself, drive most quality-of-life drops. Ding et al. (2017) echo this by finding small, not huge, differences.
Why it matters
Always ask the child, not just the parent, when you measure well-being. Kids often see their lives more positively than Mom or Dad does. Use simple rating scales in session and compare both views. If social support or physical health scores dip, add peer clubs or movement breaks before tackling other goals.
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02At a glance
03Original abstract
Studies have shown parents to report lower quality of life for their children with autism spectrum disorder than children's self-report scores and the same applies for data on typically developing children. Our objectives were to: (1) explore how high-functioning children with autism spectrum disorder rate their quality of life compared with paired controls without autism spectrum disorder; (2) explore how parents of high-functioning children with autism spectrum disorder rate their children's quality of life compared with parents of paired controls; and (3) compare child self-reports of quality of life with their parent's proxy-reports for both groups of children. Data were collected with the Icelandic self- and proxy-reported versions of the KIDSCREEN-27. Reports of 96 children with autism spectrum disorder, 211 controls and their parents were included in the analyses. Compared with controls, children with autism spectrum disorder had lower means on all quality of life dimensions. Parents of children with autism spectrum disorder evaluated their children's quality of life lower on all dimensions than did parents of controls. On four out of five dimensions, children with autism spectrum disorder reported better quality of life than did their parents. Despite differences in ratings children with autism spectrum disorder and their parents agreed on the most problematic dimensions, namely, social support and peers and physical well-being. Our results highlight the importance of seeking the viewpoints of both children and their parents.
Autism : the international journal of research and practice, 2017 · doi:10.1177/1362361316630881