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. 2025 Jun;55(6):1982-1987.
doi: 10.1007/s10803-023-06054-y. Epub 2023 Aug 29.

Health Related Quality of Life in Autistic Youth and Their Families

Meredith A Nelson  1   2 , Rebecca C Shaffer  3   4 , Lauren M Schmitt  3   4 , Marika C Coffman  5 , Paul S Horn  3   4 , Debra L Reisinger  3   4 , Craig A Erickson  3   6
Affiliations

Health Related Quality of Life in Autistic Youth and Their Families

Meredith A Nelson et al. J Autism Dev Disord. 2025 Jun.

Abstract

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.

Keywords: Autism; Autism Spectrum Disorder; Health Related Quality of Life; Quality of Life.

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Conflict of interest statement

Declarations: Craig A. Erickson received funding from a grant from The John Merck Fund. Craig A. Erickson is also an associate editor for JADD. All other authors have no competing interests to declare that are relevant to the content of this article.

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References

    1. Aman, M. G., Singh, N. N., Stewart, A. W., & Field, C. J. (1985). The aberrant behavior checklist: A behavior rating scale for the assessment of treatment effects. American journal of mental deficiency.
    1. Aman, M. G., Norris, M., Kaat, A. J., Andrews, H., Choo, T. H., Chen, C., Wheeler, A., Bann, C., & Erickson, C. (2020). Factor structure of the aberrant behavior checklist in individuals with Fragile X syndrome: Clarifications and future guidance. Journal of Child and Adolescent Psychopharmacology, 30(8), 512–521. - DOI - PubMed
    1. Benjamini, Y., & Hochberg, Y. (1995). Controlling the false discovery rate: A practical and powerful approach to multiple testing. Journal of the Royal statistical society: series B (Methodological), 57(1), 289–300. - DOI
    1. Chiang, H. M., & Wineman, I. (2014). Factors associated with quality of life in individuals with autism spectrum disorders: A review of literature. Research in autism spectrum disorders, 8(8), 974–986. - DOI
    1. Coales, C., Heaney, N., Ricketts, J., Dockrell, J. E., Lindsay, G., Palikara, O., & Charman, T. (2019). Health-related quality of life in children with autism spectrum disorders and children with developmental language disorders. Autism & Developmental Language Impairments, 4, 2396941519851225. - DOI