Quality of Life of High Functioning Children and Youth with Autism Spectrum Disorders Compared to a Paired Control Group of Peers: Self and Proxy Reports

Background: Studies have shown parents to report lower quality of life (QoL) scores for their children with ASD than children’s self-report scores and data on typical children. Often these studies have had few participants... [ view full abstract ]

Background:
Studies have shown parents to report lower quality of life (QoL) scores for their children with ASD than children’s self-report scores and data on typical children. Often these studies have had few participants and normative data on peers have been used for comparison. Our objectives were to: a) explore how high-functioning children with ASD rate their QoL compared with paired controls without ASD; b) explore how parents of high-functioning children with ASD rate their children’s QoL compared with parents of paired controls; and c) compare child self-reports of QoL with their parent-proxy reports for both groups of children.
Methods:
A cross-sectional comparative design was used. Data was collected with the national self- and proxy-reported versions of the KIDSCREEN-27. Reports of 96 children with ASD, 211 controls and their parents’ reports were included in the analyses.
Results:
Compared with controls, children with ASD had lower means on all QoL dimensions. Parents of children with ASD evaluated their children’s QoL lower on all dimensions than did parents of controls. On four out of five dimensions, children with ASD reported better QoL than did their parents. Children with ASD and their parents nevertheless agreed on the most problematic dimensions, namely Social support & Peers and Physical Well-being.
Conclusion: The study gives insights about QoL of high-functioning children with ASD both from the perspective of the child and of their parent-proxy.
Implications for practice:
Our results highlight the importance of seeking the viewpoints of both children and their parents in research and practice.