Health Related Quality of Life in Autistic Youth and Their Families

Purpose The construct Quality of Life (QoL) involves a range of factors related to one’s well-being. Individuals on the autism spectrum have been previously reported to have lower QoL. The purpose of the present study is to examine QoL in autistic individuals and their families and to evaluate associations between QoL and measures of functioning using the PedsQL 4.0. Method Thirty-six autistic youth (ages 9–21 years) and their caregivers completed the PedsQL. Caregivers completed additional measures of their children’s adaptive, social, behavioral, and emotional functioning. Results Parents and youth generally agreed on the PedsQL, with the exception of the Social Functioning domain, which youth rated higher. The parent rated PedsQL did not correlate with most areas of caregiver-rated functioning; however, there were significant negative correlations between irritability and family functioning. Conclusion Limitations of this study included small sample size; broad range of intellectual functioning; lack of sample diversity; and likely recruiting bias for a drug treatment study. Despite limitations, HRQoL is an important feature that should be measured in addition to features of autism or symptoms of co-occurring symptoms.