Health-related quality of life in children with high-functioning autism.
High-functioning autistic children say their own health-related quality of life is much lower than peers—so interview the child, not just the parent.
01Research in Context
What this study did
The team asked school-age kids with high-functioning autism how they felt about their own health and happiness.
They also asked the parents the same questions.
Then they compared the answers to kids without autism.
What they found
Both the kids and the parents gave lower scores than the neurotypical group.
The gap was large, no matter who answered the form.
How this fits with other research
Ding et al. (2017) saw the same pattern in Iceland, but the drop looked smaller.
Kuhlthau et al. (2010) showed the drop earlier, yet only parents spoke; Marie-Christine added the child’s voice and kept the large gap.
Adams et al. (2019) explain part of the reason: when kids feel anxious about uncertainty, their quality-of-life scores crash even more.
Why it matters
You now have proof that even talkative, bright students with autism can feel their life is hard.
Ask the child directly on every re-assessment; the parent view alone will under-count the problem.
If scores are low, probe for anxiety and daily uncertainty—those pieces may be the real targets for your next intervention.
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02At a glance
03Original abstract
The health-related quality of life of school-aged children with high-functioning autism is poorly understood. The objectives of this study were to compare the health-related quality of life of children with high-functioning autism to that of typically developing peers and to compare child-self and parent-proxy reports of health-related quality of life of children. A cross-sectional study of children with high-functioning autism (n = 30) and peers (n = 31) was conducted using the Pediatric Quality of Life Inventory 4.0 Generic Core Scales. Children with high-functioning autism had significantly poorer health-related quality of life than peers whether reported by themselves (p < .001) or their parents (p < .001), although disagreement (intra-class coefficient = -.075) between children and parental scores suggested variance in points of view. This study specifically investigated health-related quality of life in children with high-functioning autism as compared to a sample of peers, from the child's perspective. It strengthens earlier findings that children with high-functioning autism experience poorer health-related quality of life than those without this disorder and points to the importance of clinicians working with families to identify areas in a child's life that promote or hinder their sense of well-being.
Autism : the international journal of research and practice, 2015 · doi:10.1177/1362361313509730