Abstract

Previous studies have reported reduced quality of life in autism. Improving quality of life for autistic people is, therefore, a key priority for clinical research and practice. However, the relative impact of core autism traits (e.g. social-communication difficulties), as compared to associated mental health symptoms (e.g. anxiety, depression) on quality of life remains poorly understood. This is despite at least 20%–50% of autistic individuals experiencing associated anxiety and/or depression symptoms. Hence, we measured subjective quality of life in 573 six to thirty-year-olds (autism spectrum disorder N = 344), using two widely validated questionnaires. Adults self-reported on the World Health Organization Quality of Life–Brief instrument. Parents of children/adolescents completed the Child Health and Illness Profile. We assessed individual variability across both measures and modelled associations between quality of life, core autism traits, anxiety, and depression symptoms. Across both age groups and quality of life measures, autistic individuals scored lower than comparison individuals, on average, particularly for physical health in adults (d = −1.24, 95% confidence interval: [−1.56, −0.93]) and school achievement for children/adolescents (d = −1.06, 95% confidence interval: [−1.29, −0.84]). However, a notable proportion of autistic individuals (36%–71% across quality of life domains) did not have reduced quality of life. Across ages and quality of life measures, severity of associated symptoms was significantly related to reduced quality of life on several domains, after accounting for core autism traits. Most notably, depression symptoms were related to reduced physical/psychological well-being in both adults (β ⩾ −0.34) and children/adolescents (β = −0.29, 95% confidence interval: [−0.36, −0.14]). For children/adolescents, anxiety symptoms (β ⩾ −0.28) and core social-communication difficulties (β ⩾ −0.22) were also related to subjective quality of life outcomes. Overall, findings indicate that not all autistic individuals experience reduced subjective quality of life. Variability in quality of life is significantly influenced by associated symptoms, across developmental stage. This may provide a tractable target for mental health services to improve quality of life for autistic individuals over the lifespan.Lay abstractPrevious studies suggest that some autistic individuals report lower satisfaction, or well-being, with different aspects of everyday life than those without autism. It is unclear whether this might be partly explained by symptoms of anxiety and/or depression, which affect at least 20%–50% of autistic people. In this study, we measured individual differences in well-being in 573 six to thirty-year-olds with and without a diagnosis of autism. We investigated whether individual differences in well-being were explained by autism traits (e.g. social-communication difficulties) and/or anxiety and depression symptoms. We showed that, though well-being was lower for some autistic individuals, compared to those without autism, many autistic individuals reported good well-being. Where well-being was reduced, this was particularly explained by depression symptoms, across all ages. For children/adolescents, anxiety and social-communication difficulties were also related to some aspects of well-being. Our study suggests that support and services for improving mental health, especially depression symptoms, may also improve broader outcomes for autistic people.

Highlights

  • Defining quality of lifeQuality of life (QoL) is a fundamental outcome measure across psychiatry and healthcare, as recognised by the UK National Institute for Health and Care Excellence and World Health Organization (Mukuria et al, 2015; Provenzani et al, 2020; World Health Organization, 1998)

  • The strongest effect size for the difference in quality of lifeQuality of life (QoL) between ASD and comparison adults was on the WHOQoL-BREF Physical Health domain (Z = 7.72, p < 0.001, d = −1.24, 95% CI: [−1.56, −0.93])

  • The strongest effect size for the difference between ASD and comparison children/adolescents was on the Child Health and Illness Profile– Child Edition (CHIP-CE) school Achievement domain (Z = 8.92, p < 0.001, d = −1.06, 95% CI: [−1.29, −0.84])

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Summary

Introduction

Quality of life (QoL) is a fundamental outcome measure across psychiatry and healthcare, as recognised by the UK National Institute for Health and Care Excellence and World Health Organization (Mukuria et al, 2015; Provenzani et al, 2020; World Health Organization, 1998). QoL has been identified as a gold standard for assessing well-being in autism – an outcome measure prioritised by autistic people and their families (McConachie et al, 2015). QoL can be defined as an individual’s satisfaction with their position in life, linked with their context, goals, expectations, standards and concerns (World Health Organization, 1998). Its multifaceted nature means that QoL cannot be reduced to a single score and must be considered across several domains, from physical and psychological health to social relationships.

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