How do core autism traits and associated symptoms relate to quality of life? Findings from the Longitudinal European Autism Project

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 abstract Previous 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.

Polygenic risk for psychiatric disorder reveals distinct association profiles across social behaviour in the general population

“…In contrast, the stronger genetic association of ADHD, ASD, and MD risk with peer problems, compared to prosocial scores, may reflect genetic links with socially disruptive behaviours and poor social skills, potentially related to difficulties with communication, emotion regulation, executive functioning, and/or social isolation 4,45,46 . The similarity in polygenic trait effects for ADHD, ASD, and MD is in line with previously reported similarities in social symptoms at the phenotypic level [47][48][49] and genetic correlations between these conditions 50 .…”

Adults with Autism: Changes in Understanding Since DSM-111

“…Autistic women tend to report a higher social QoL and men a higher physical QoL (Mason et al 2019), but investigations of the association between QoL and other factors, such as intellectual ability or overall social functioning, have produced inconsistent findings (Kim and Bottema-Beutel 2019;Lord et al 2020). It is also important to note that not all studies have found differences in QoL between adults with autism and those in the general population, (Hong et al 2016;Moss et al 2017;Oakley et al 2020) although this may be at least partly due to the limitations of standard QoL measures (c.f McConachie et al 2018McConachie et al , 2020.…”

Assessing general and autism‐relevant quality of life in autistic adults: A psychometric investigation using item response theory

“…As a part of the larger survey battery, participants also completed multiple other self‐report questionnaires, including measures of autism symptomatology, co‐occurring psychopathology, and personality (i.e., neuroticism and related constructs), all of which we hypothesized would be associated with reduced QoL in autistic adults (Kuhlthau et al, 2010; Lahey, 2009; Oakley et al, 2021; Tesio et al, 2018; Williams, Everaert, & Gotham, 2021). Autistic traits were quantified using the Social Responsiveness Scale–Second Edition: Adult Self‐report (SRS‐2; Constantino & Gruber, 2012), from which the total T‐score was derived.…”

“…Research to date on QoL in autistic people has primarily compared the QoL of autistic and non‐autistic people across multiple domains, invariably demonstrating that autistic children, adolescents, and adults on average have lower QoL than the general population (Ayres et al, 2018; van Heijst & Geurts, 2015). More recent work in this area has also attempted to determine which clinical, demographic, and environmental factors that most significantly contribute to this reduced QoL (Deserno et al, 2019; Kim & Bottema‐Beutel, 2019; Oakley et al, 2021). However, a major limitation of this body of literature is the fact that the measures of QoL used in autistic people were designed for the general population and may not fully represent the factors that autistic people themselves find most salient or meaningful (Erez & Gal, 2020; McConachie et al, 2018, 2019).…”