959959

research-article2020
AUT0010.1177/1362361320959959AutismOakley et al.

Original Article

Autism

How do core autism traits and 1­–16

© The Author(s) 2020

associated symptoms relate to Article reuse guidelines:

https://doi.org/10.1177/1362361320959959

quality of life? Findings from the sagepub.com/journals-permissions

DOI: 10.1177/1362361320959959

Longitudinal European Autism Project

journals.sagepub.com/home/aut

Bethany FM Oakley1 , Julian Tillmann1,2, Jumana Ahmad1,3,

Daisy Crawley1, Antonia San José Cáceres1,4, Rosemary Holt5,
Tony Charman1,6 , Tobias Banaschewski7 , Jan Buitelaar8,9,
Emily Simonoff1,6 , Declan Murphy1,6* and Eva Loth1* and
The EU-AIMS LEAP Group

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

9
1
King’s College London, UK  arakter Child and Adolescent Psychiatry University Center, The
K
2
University of Vienna, Austria Netherlands
3
University of Greenwich, UK *Joint senior/last authors
4
Hospital General Universitario Gregorio Marañón, Spain
5
Corresponding author:
University of Cambridge, UK Bethany FM Oakley, Department of Forensic and Neurodevelopmental
6
South London and Maudsley NHS Foundation Trust (SLaM), UK Sciences, Institute of Psychiatry, Psychology & Neuroscience, King’s
7
Universität Mannheim, Germany College London, De Crespigny Park, London SE5 8AF, UK.
8
Radboud University Nijmegen Medical Center, The Netherlands Email: [email protected]
2 Autism 00(0)

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.

Keywords
anxiety, autism, depression, quality of life, well-being

Introduction Bishop-Fitzpatrick et al., 2016; Steinhausen et al., 2016).

The focus on objective QoL may be partly explained by the
Defining quality of life lack of available measurement tools for assessing subjective
Quality of life (QoL) is a fundamental outcome measure QoL in autism that are suitable for all ability levels and
across psychiatry and healthcare, as recognised by the UK developmental stages (Ayres et al., 2018). However, the
National Institute for Health and Care Excellence and very definition of QoL emphasises its subjective nature,
World Health Organization (Mukuria et al., 2015; reflecting an individual’s perceptions of their well-being
Provenzani et al., 2020; World Health Organization, 1998). (i.e. how satisfied they are with their friendships, employ-
Recently, QoL has also been identified as a gold standard ment etc.; Coghill et al., 2009). Thus, there has been a more
for assessing well-being in autism – an outcome measure recent shift towards establishing individual variability in
prioritised by autistic people and their families subjective QoL in autism and identifying the factors that
(McConachie et al., 2015). QoL can be defined as an indi- may explain why a proportion of autistic individuals experi-
vidual’s satisfaction with their position in life, linked with ence QoL reductions.
their context, goals, expectations, standards and concerns Existing research regarding subjective QoL outcomes
(World Health Organization, 1998). Its multifaceted nature would indicate that, on average, autistic people experience
means that QoL cannot easily be reduced to a single score lower subjective well-being than neurotypical individuals,
and must be considered across several domains, from with a large effect size (d = −0.96; van Heijst & Geurts,
physical and psychological health to social relationships. 2015). This pattern of findings has been particularly reported
Subjective well-being may vary across these domains, for QoL domains indexing satisfaction with social relation-
each of them influenced by different contributing factors. ships (e.g. feeling supported by friends/peers; Graham
Holmes et al., 2020; Mason et al., 2018; Moss et al., 2017),
psychological health (e.g. positive/negative affect, self-
QoL in autism esteem, cognition; Hong et al., 2016) and – for autistic
Accumulating evidence suggests that some autistic indi- young people – school functioning (Kuhlthau et al., 2013).
viduals experience reduced QoL, as compared to neuro- However, as with objective QoL outcomes, there may be
typical individuals and those with other neurodevelopmental substantial individual variability in the subjective well-
conditions, including attention deficit/hyperactivity disor- being of each autistic person. This variability may also
der (ADHD; Barneveld et al., 2014; van Heijst & Geurts, reflect the ‘person-environment fit’, or balance between
2015). This emphasises that improving QoL outcomes in objective (i.e. societal demands, expectations, accommoda-
autism is a key priority for clinical research and practice. tions) and subjective (i.e. individuals needs and preferences)
Nevertheless, it must be acknowledged that the experi- outcomes (Billstedt et al., 2011; Henninger & Taylor, 2012).
ences of autistic people vary substantially (Howlin & Moss,
2012). For example, while many individuals remain highly Factors associated with subjective QoL in
dependent on their families or support services into adult-
autism
hood, others live independently – maintaining supportive
relationships and regular employment (Howlin et al., 2004). Notably, establishing the clinical determinants of subjec-
Historically, studies that have highlighted such variability in tive QoL reductions is essential for identifying where inter-
the outcomes of autistic people have largely focused on ventions and support would best be targeted to improve
objective QoL (see Henninger & Taylor, 2012 for a review). outcomes for some autistic people. Several studies have
This means that they considered quantifiable, ‘normative’ noted that higher severity of core autism traits, such as
markers of outcome, such as number of friendships, form of social-communication difficulties, are significantly associ-
employment and contact with services (Billstedt et al., 2011; ated with reduced subjective QoL in individuals with and
Oakley et al. 3

without autism (Chiang & Wineman, 2014; de Vries & known to influence QoL. Last, almost all existing studies
Geurts, 2015; Pisula et al., 2015; van Steensel et al., 2012). have focused on single age groups, predominantly children
In addition, other factors highly implicated in autism, such (Bishop-Fitzpatrick et al., 2018), even though autism is a
as differences in executive functioning and sensory pro- lifelong condition for which QoL reductions have been
cessing sensitivities, may also be related to QoL (de Vries shown to persist into later adulthood (Graham Holmes et al.,
& Geurts, 2015; Dijkhuis et al., 2016; Lin & Huang, 2019). 2020; Mason et al., 2019; van Heijst & Geurts, 2015).
However, far fewer studies have investigated the impact Hence, in this study, we aimed to investigate (1) individ-
of associated mental health symptoms on QoL in autism. ual variability in QoL among children, adolescents and adults
This is despite the fact that ~20%–50% of autistic people on the autism spectrum, across several domains; and (2) their
experience associated symptoms of anxiety and/or depres- relationship with varying levels of core autism traits and
sion (Hollocks et al., 2019; Lai et al., 2019; Simonoff et al., associated symptoms of anxiety and depression. We
2008). Furthermore, strong relationships have been identi- addressed our aims using data from the European Autism
fied between mental health symptoms and QoL in the wider Interventions Multicentre Study for Developing New
population (Rapaport et al., 2005). Considering this, there Medications (EU-AIMS) Longitudinal European Autism
has been a recent call for research based on well-character- Project (LEAP; Charman et al., 2017; Loth et al., 2017) – a
ised samples of individuals, varying in severity of neurode- well-characterised cohort of autistic males and females,
velopmental/neuropsychiatric symptoms, to identify how diverse in age (6–30 years) and IQ (50–148). Based on the
QoL may be attributable to specific symptom dimensions previous literature reported above, we predicted that autistic
that frequently co-occur (Jonsson et al., 2017). individuals would score lower for QoL than comparison
Some existing research has begun to indicate relation- individuals, but that we may also detect substantial individ-
ships between associated mental health symptoms and fac- ual variability in subjective QoL reports. In addition, since
ets of QoL in autism. For instance, elevated anxiety has associated mental health symptoms have a strong impact on
been found to relate to increased physical health problems, QoL in the wider population, we predicted that anxiety and/
including chronic gastrointestinal symptoms, in young or depression symptoms would explain significant variance
people with autism (Mazurek et al., 2013). In longitudinal in QoL, even after accounting for core autism traits.
models, anxiety and depression symptoms early in devel-
opment have also been linked to lower life satisfaction,
Methods
greater social difficulties and reduced adaptive functioning
by adulthood (Gotham et al., 2015). Furthermore, current Participants
mental health diagnoses are associated with subjective
QoL in autistic adults, across domains of physical, psycho- This study is based on data from the EU-AIMS LEAP
logical, social and environmental well-being, as rated with cohort (please see Charman et al., 2017; Loth et al., 2017).
the World Health Organization Quality of Life–Brief A total of 573 males and females with and without a diag-
instrument (WHOQoL-BREF; Mason et al., 2018). nosis of autism spectrum disorder (ASD N = 344), aged
Generalised internalising problems are also associated 6–30 years and with IQ of 50–148 and available QoL data
with general subjective satisfaction and physical/psycho- were included. Participant characteristics and measures
logical QoL during childhood, indexed with the Child included in the current study are shown in Table 1.
Health and Illness Profile (Kuhlthau et al., 2013). ASD and comparison groups did not significantly differ
Nevertheless, we note some issues that require further by sex ( χ (21, 573) = 1.80 , p = 0.18, φ = 0.06) and differed only
investigation. First, previous studies have often utilised clini- nominally on age (Z = 1.95, p = 0.05, d = −0.16, 95% confi-
cal or diagnostic cut-points to determine whether associated dence interval (CI): [−0.33, 0.00]). Average IQ was signifi-
symptoms are absent or present – an approach which may cantly lower in the ASD group than the comparison group
underestimate the impact of these symptoms on QoL. Indeed, (Z = 3.85, p < 0.001, d = −0.32, 95% CI: [−0.49, −0.15]),
there are several diagnostic challenges to identifying co- though both ASD and comparison groups included indi-
occurring mental health/neurodevelopmental symptoms, viduals with mild intellectual disability (IQ ⩽ 75) in the
meaning some individuals never receive a formal diagnosis child/adolescent (but not adult) age range. This study was
and therefore remain underrepresented in such research approved by ethics committees at each participating site
(Hollocks et al., 2019; White et al., 2009). Second, where and informed consent/assent was obtained from all partici-
existing research has taken a dimensional approach to assess pants and their parents, where applicable.
the impact of associated symptoms on QoL, across their full
range of severity, other factors like core autism traits are not
Materials and procedures
consistently controlled for in analyses (Adams et al., 2019)
and/or internalising and emotional problems are considered QoL measures. We administered two widely used QoL
as a general, unitary construct. This means that it is not pos- measures – in adults without intellectual disability, the
sible to estimate the added impact of anxiety and/or depres- 26-item self-report WHOQoL-BREF (The WHOQoL
sion symptoms in autism, over and above other factors Group, 1996) and, for children and adolescents, the
 4
Table 1. Descriptives and group comparisons for participant characteristics.
(a) Adults (18–30 years)

ASD Non-ASD Group Comparison

N M (SD) Range N M (SD) Range χ (2df , N ) p φ

Sex: Males (Females) 72 (34) – – 56 (30) – – 0.17(1, 192) 0.68 0.03

Z p d [95% CI]
Age (years) 106 23.08 (3.57) 18–30 86 23.32 (3.43) 18–30 0.64 0.52 −0.07 [−0.35, 0.22]
Full-scale IQ 106 105.64 (14.52) 75–148 86 109.70 (12.15) 85–142 1.86 0.06 −0.30 [−0.59, −0.01]
SRS-2 (Self) 104 64.58 (10.17) 40–89 76 46.83 (6.06) 37–67 9.93 <0.001*** 2.05 [1.68, 2.41]
SSP 41 154.07 (26.33) 93–190 – – – – – –
DAWBA Anxiety 96 3a 0–4 77 1a 0–4 7.11 <0.001*** 1.28b
DAWBA Depression 84 1a 0–5 66 0a 0–3 3.19 0.001*** 0.54b
DAWBA ADHD 59 0a 0–4 – – – – – –

(b) Children/Adolescents (6–17 years)

ASD Non-ASD Group Comparison

N M (SD) Range N M (SD) Range χ (2df , N ) p φ

Sex: Males (Females) 173 (65) – – 95 (48) – – 1.68(1, 381) 0.20 0.07
Z p d [95% CI]
Age (years) 238 12.82 (3.11) 6–17 143 13.08 (3.13) 6–17 0.85 0.40 −0.08 [−0.29, 0.12]
Full-scale IQ 230 97.86 (19.55) 53–148c 141 103.56 (17.91) 50–140c 3.13 0.002*** −0.30 [−0.51, −0.09]
SRS-2 (Parent) 230 75.40 (10.71) 45–90 141 47.29 (8.35) 37–90 15.19 <0.001*** 2.84 [2.55, 3.14]
SSP 186 133.62 (25.26) 69–189 116 176.32 (16.02) 75–190 12.53 <0.001*** −1.93 [−2.20, −1.65]
DAWBA Anxiety 198 2a 0–5 111 1a 0–4 9.88 <0.001*** 1.35b
DAWBA Depression 193 1a 0–5 109 0a 0–2 5.42 <0.001*** 0.65b
DAWBA ADHD 184 3a 0–5 105 0a 0–5 9.65 <0.001*** 1.39b

(c) Total Sample (6–30 years)

ASD Non-ASD Group Comparison

N M (SD) Range N M (SD) Range χ (2df , N ) p φ

Sex: Males (Females) 245 (99) – – 151 (78) – – 1.80(1, 573) 0.18 0.06
Z p d [95% CI]
Age (years) 344 15.98 (5.75) 6–30 229 16.93 (5.93) 6–30 1.95 0.05* −0.16 [−0.33, 0.00]
Full-scale IQ 336 100.31 (18.45) 54–148c 227 105.88 (16.22) 50–142c 3.85 <0.001*** −0.32 [−0.49, −0.15]
SRS-2 (Self) 168 63.11 (10.28) 40–89 133 47.02 (5.75) 37–67 12.38 <0.001*** 1.88 [1.60, 2.15]
SRS-2 (Parent) 307 72.34 (11.91) 43–90 146 47.12 (8.26) 37–90 15.55 <0.001*** 2.32 [2.07, 2.57]
SSP 227 137.31 (26.59) 69–190 120 176.63 (15.87) 75–190 12.49 <0.001*** −1.68 [−1.93, −1.42]
DAWBA Anxiety 294 3a 0–5 188 1a 0–4 11.95 <0.001*** 1.28b
DAWBA Depression 277 1a 0–5 175 0a 0–3 6.14 <0.001*** 0.61b
DAWBA ADHD 243 2a 0–5 105 0a 0–5 8.73 <0.001*** 1.07b

ASD: autism spectrum disorder; CI: confidence interval; SRS-2: Social Responsiveness Scale–Second Edition; SSP: Short Sensory Profile; DAWBA: Development and Wellbeing Assessment; ADHD: attention deficit/hyperactivity
disorder; χ2: chi-square statistic (degrees of freedom, sample size); φ: phi effect size for chi-square; Z: statistic for Mann–Whitney comparison; d: Cohen’s d effect size [95% confidence intervals].
a
Median reported, due to ordinal nature of the scale.
b
r effect size for Mann–Whitney U was converted to d using Rosenthal (1994).
c
51 individuals in the child/adolescent age range had IQ < 75 (ASD N = 37).
*p ⩽ 0.05; ***p ⩽ 0.002 (significant after Bonferroni correction; p = 0.05/28).
Autism 00(0)
Oakley et al. 5

45-item parent-report Child Health and Illness Profile– Associated symptom measures. Finally, we used the Devel-
Child Edition (CHIP-CE; Riley et al., 2004). opment and Wellbeing Assessment (DAWBA; Goodman
The WHOQoL-BREF is currently one of the only QoL et al., 2000) to index anxiety and depression symptoms.
tools that has been validated for use with autistic adults We chose this measure because it assesses diagnostically
without intellectual disability (Hong et al., 2016; relevant psychopathology and can be administered reliably
McConachie et al., 2018). It assesses QoL across four to multiple informants (e.g. self and parent). Final scores
domains: Physical Health (To what extent do you feel that result from the best available information – in N = 152, two
physical pain prevents you from doing what you need to informants (self and parent) were available, with the
do?); Psychological Health (How much do you enjoy your DAWBA providing a combined score, weighting both
life?); Social Relationships (How satisfied are you with the respondents’ answers. In N = 113 self-report and N = 215
support you get from your friends?); and Environment (To parent-report only were available. Scores reflect symptom
what extent do you have the opportunity for leisure activi- severity, ranked ordinally from 0 to 5. For anxiety, where
ties?). 106 autistic adults and 86 neurotypical adults, aged multiple diagnoses were evaluated, we computed an
18–30 years and with IQ > 75, completed the WHOQoL- overall score in accordance with Goodman et al. (2011),
BREF. Scores were transformed to a 0–100 scale for com- by deriving each participant’s highest score across indi-
parability with previous reports. Higher scores indicate vidual anxiety disorders (separation anxiety, specific pho-
better QoL. If <20% of values within a domain were miss- bia, social phobia, generalised anxiety, panic disorder,
ing (Physical Health N = 81, Psychological Health N = 82), agoraphobia, obsessive-compulsive disorder, post-trau-
we imputed them by taking the mean of non-missing val- matic stress disorder). Thus, the overall anxiety scale cor-
ues within that domain, as per the official scoring manual. responds to the form of anxiety that the individual
The CHIP-CE is a commonly administered parent- expresses most prominently.
report tool that measures QoL across five domains: physi- In the supplement (Supplementary Table 3), we addi-
cal/psychological Comfort (How often did your son/ tionally included DAWBA-rated ADHD symptoms for the
daughter have pain that really bothered him/her?); child/adolescent group, since ADHD symptoms have been
Satisfaction (How often does your son/daughter feel shown to relate to QoL in autistic young people and chil-
happy?); Resilience (How often does your son/daughter dren with a primary diagnosis of ADHD are reported to
have an adult he/she can go to for help with a real prob- experience QoL reductions.
lem?); Risk Avoidance (How often does your son/daughter
do things that are dangerous?); and Achievement (How
Statistical analysis
did he/she do in his/her schoolwork?). We administered
the CHIP-CE to parents of 381 children and adolescents – Data were analysed using RStudio®, Version 3.5.1. As the
146 aged 6–11 years (ASD N = 91) and 235 aged 12– DAWBA is rated on an ordinal scale, we used non-para-
17 years (ASD N = 147), including 51 individuals with metric statistics for group comparisons (Mann–Whitney)
IQ ⩽ 75 (ASD N = 37). We report mean scores, with higher and correlations (Spearman’s rs). Bonferroni correction for
scores reflecting better QoL. Imputation of missing values multiple comparisons was applied throughout.
was not necessary for any domain. First, we assessed mean group differences in QoL scores
between ASD and comparison groups, across each domain
Core autism traits. To measure the impact of current, core of the WHOQoL-BREF for adults aged 18–30 years and
autism traits on QoL, we administered the Social Respon- the CHIP-CE for children/adolescents aged 6–17 years,
siveness Scale–Second Edition (SRS-2; Constantino & respectively. We then examined individual variability in
Gruber, 2012). We chose this measure because it has been QoL within the adult and child/adolescent subsamples from
validated for use across a wide age range (e.g. 6–30 years). the ASD group, by calculating each individual’s score from
Higher scores (sex-specific T-norms) indicate more severe the comparison group mean for each QoL domain. We used
difficulties. A self-report version was administered for all this criterion to quantify the proportion of autistic individu-
adults (i.e. ASD and comparison) aged 18–30 years and a als scoring within or outside of 1 and 2 standard deviations
parent-report version for all autistic individuals, as well as from the comparison group mean.
comparison individuals aged 6–17 years. Finally, we used linear regression models (‘lm’, func-
In the child/adolescent group, we also conducted supple- tion) to establish associations between QoL and core
mentary analyses (Supplementary Table 3), using the Short autism traits, anxiety and depression symptoms in the
Sensory Profile (SSP; Tomchek & Dunn, 2007) to index adult and child/adolescent subsamples from the ASD
sensory processing differences commonly associated with group. QoL domains from the WHOQoL-BREF for the
autism that have been shown to relate to QoL. The SSP was adult sample and the CHIP-CE for the child/adolescent
completed by parents across all ages in the ASD group and sample, respectively, were entered as dependent variables.
ages 6–17 years in the comparison group, with lower scores Independent variables across all models were age, IQ,
indicating more sensory processing differences. sex, core autism traits (SRS-2) and associated symptoms
6 Autism 00(0)

Table 2. Descriptives and group comparisons for QoL domains.

(a) WHOQoL-BREF (adults 18–30 years)

ASD Comparison Z p d [95% CI]

N M (SD) Range N M (SD) Range

Physical Health 106 66.17 (16.00) 14–96 86 83.13 (9.96) 54–100 7.72 < 0.001*** −1.24 [−1.56, −0.93]
Psychological Health 106 55.09 (18.06) 4–100 86 71.38 (14.14) 25–100 6.69 < 0.001*** −0.99 [−1.29, −0.69]
Social Relationships 105 50.61 (21.34) 0–92 86 73.35 (17.43) 17–100 7.17 < 0.001*** −1.16 [−1.46, −0.85]
Environment 64 63.64 (15.92) 31–97 47 71.81 (15.59) 28–100 2.71 0.007** −0.52 [−0.90, −0.14]

(b) CHIP-CE (Children/Adolescents 6–17 years)

Satisfaction 238 3.50 (0.64) 1.67–5.00 143 4.04 (0.47) 2.33–5.00 8.25 < 0.001*** −0.93 [−1.15, −0.71]
Comfort 238 4.18 (0.50) 2.83–5.00 143 4.53 (0.43) 3.00–5.00 7.15 < 0.001*** −0.74 [−0.95, −0.52]
Resilience 238 3.82 (0.48) 2.50–5.00 143 4.05 (0.45) 2.50–4.88 4.57 0.006** −0.49 [−0.70, −0.28]
Risk Avoidance 236 4.08 (0.52) 2.62–5.00 142 4.38 (0.42) 2.12–5.00 5.69 < 0.001*** −0.62 [−0.83, −0.41]
Achievement 223 3.06 (0.65) 1.12–4.62 140 3.72 (0.57) 1.62–5.00 8.92 < 0.001*** −1.06 [−1.29, −0.84]

ASD: autism spectrum disorder; CI: confidence interval; WHOQoL-BREF: World Health Organization Quality of Life–Brief instrument; CHIP-CE:
Child Health and Illness Profile.
**p < 0.01, ***p < 0.006 (significant after Bonferroni correction; p = 0.05/9).

(DAWBA anxiety, depression). To be included in this (Achievement) to 66.8% (Resilience) of autistic chil-
analysis, individuals had to have available data for all dren/adolescents scored within 1 standard deviation of
variables in the regression model. the comparison group mean.
In contrast, some autistic individuals did have notable
QoL reductions, scoring >2 standard deviations below
Results the comparison group mean. Averaging across WHOQoL-
Group comparisons on QoL BREF domains, this applied to 22.0% of autistic adults;
and averaging across CHIP-CE domains, 18.5% of chil-
First, to establish whether results from the current sample dren/adolescents. Descriptives for the characteristics of
replicated previous studies showing reduced QoL in autism, individuals from the ASD group who scored within or
we compared average QoL scores for the ASD and com- above 1 standard deviation, as compared to those who
parison groups. Across both age groups, on both QoL scored below 1 standard deviation from the comparison
measures, autistic individuals (as a group) scored signifi- group, are presented in Supplementary Table 2.
cantly lower for QoL than comparison individuals (Table 2; Of note, we confirmed that QoL scores in our comparison
Figure 1). Removing individuals with IQ < 75 (N = 51) group corresponded to existing published norms (Hawthorne
from both ASD and comparison groups did not change the et al., 2006; Riley et al., 2001), except for CHIP-CE Comfort
pattern of results, nor significance. (comparison group scored higher than norms) and
The strongest effect size for the difference in QoL between Achievement domains (lower than norms; Supplementary
ASD and comparison adults was on the WHOQoL-BREF Table 1), indicating that our results were not driven by a par-
Physical Health domain (Z = 7.72, p < 0.001, d = −1.24, 95% ticularly low- or high-scoring comparison group.
CI: [−1.56, −0.93]). The strongest effect size for the differ-
ence between ASD and comparison children/adolescents
was on the CHIP-CE school Achievement domain (Z = 8.92, The influence of core autism traits and
p < 0.001, d = −1.06, 95% CI: [−1.29, −0.84]). associated anxiety/depression symptoms
on QoL
Individual variability in QoL Considering the significant individual variability in QoL
Nevertheless, as highlighted by the individual data identified in the previous section, we assessed how this vari-
points presented in Figure 1, there was notable indi- ability may be related to severity of core autism traits and
vidual variability in QoL scores within both the ASD associated anxiety and depression symptoms, within the
and comparison groups. Across WHOQoL-BREF adult and child/adolescent subsamples from the ASD group.
domains, between 34.9% (Physical Health) and 54.7% Regression coefficients and model fit statistics are shown in
(Environment) of autistic adults scored within 1 stand- Table 3. Overall, regression models were significant for all
ard deviation of the comparison group mean (please see WHOQoL-BREF and CHIP-CE domains, except WHOQoL
Figure 2). Similarly, across CHIP-CE domains, 43.0% Environment.
Oakley et al. 7

Figure 1. Boxplots showing group differences on QoL domains: (a) WHOQoL-BREF (adults 18–30 years); (b) CHIP-CE (children/
adolescents 6–17 years). Individual data points are overlaid. The black diamond represents the mean. **p < 0.01; ***p < 0.006
(significant after Bonferroni correction; p = 0.05/9).

Figure 2. Stacked bar graph showing percentage of autistic individuals with QoL scores ±1 or 2 standard deviations from the
comparison mean on each QoL domain of the WHOQoL-BREF and CHIP-CE, respectively.

WHOQoL-BREF: adults 18–30 years. For autistic adults, and Social Relationships (β = −0.40, p < 0.001, 95% CI for
associated depression symptom severity was the only sig- β: [−0.44, −0.12]).
nificant predictor of reduced QoL, after holding age, IQ,
sex, core autism traits and anxiety symptoms constant. CHIP-CE: children/adolescents 6–17 years. Similar to findings
Significant associations between increasing depression from the adult group, in the child/adolescent sample, associ-
symptoms and reduced QoL were apparent across WHO- ated depression symptom severity was a significant predic-
QoL-BREF domains of Physical Health (β = −0.38, tor of reduced physical/psychological Comfort (β = −0.29,
p = 0.001, 95% CI for β: [−0.40, −0.10]), Psychological p < 0.001, 95% CI for β: [−0.36, −0.14]), after holding age,
Health (β = −0.34, p = 0.002, 95% CI for β: [−0.37, −0.08]) IQ, sex, core autism traits and anxiety symptoms constant.
 8

Table 3. Regression model fit and coefficients showing relationships within the autism group between WHOQoL-BREF domains for adults aged 18–30 years (N = 75) and CHIP-CE
domains for children/adolescents aged 6–17 years (N = 180), with demographic factors, core autism traits and anxiety/depression symptoms.
WHOQoL-BREF (adults 18–30 years)

Physical Health Psychological Health Social Relationships Environment –

β [95% CI] β [95% CI] β [95% CI] β [95% CI] –

Demographic Age 0.01 [−0.18, 0.21] −0.04 [−0.23, 0.14] −0.03 [−0.23, 0.18] – –
IQ −0.05 [−0.27, 0.15] −0.17 [−0.37, 0.03] 0.002 [−0.22, 0.22] – –
Sex 0.14 [−0.07, 0.36] 0.08 [−0.12, 0.29] −0.15 [−0.39, 0.07] – –
Core traits SRS-2 (Self) −0.05 [−0.29, 0.19] −0.26 [−0.49, −0.03]* −0.23 [−0.50, 0.02] – –
Associated DAWBA Anxietya −0.12 [−0.30, 0.10] −0.07 [−0.25, 0.13] 0.04 [−0.18, 0.24] – –
DAWBA Depressiona −0.38 [−0.40, −0.10]*** −0.34 [−0.37, −0.08]*** −0.40 [−0.44, −0.12]*** – –
Model fit F(6, 75) = 4.39, p = 0.001***, F(6, 75) = 6.24, p < 0.001***, F(6, 74) = 3.62, p = 0.003***, F(6, 41) = 2.49, p = 0.04*, –
2
( Radj ) η p2 = 0.57 (20.1%) η p2 = 0.60 (28.0%) η p2 = 0.56 (16.4%) η p2 = 0.58 (15.9%)

CHIP-CE (Children/Adolescents 6–17 years)

Satisfaction Comfort Resilience Risk Avoidance Achievement

β [95% CI] β [95% CI] β [95% CI] β [95% CI] β [95% CI]

Demographic Age −0.13 [−0.29, −0.01]* 0.07 [−0.06, 0.20] −0.23 [−0.39, −0.09]*** 0.24 [0.11, 0.40]*** −0.002 [−0.14, 0.13]
IQ −0.06 [−0.20, 0.07] 0.05 [−0.07, 0.18] 0.07 [−0.07, 0.22] 0.06 [−0.09, 0.20] 0.34 [0.22, 0.50]***
Sex −0.005 [−0.15, 0.14] 0.07 [−0.06, 0.20] −0.06 [−0.22, 0.09] −0.18 [−0.36, −0.05]** −0.16 [−0.32, −0.03]*
Core traits SRS-2 (Parent) −0.22 [−0.37, −0.08]*** −0.14 [−0.27, −0.01]* −0.07 [−0.22, 0.08] −0.19 [−0.34, −0.04]* −0.34 [−0.48, −0.20]***
Associated DAWBA Anxietya −0.28 [−0.34, −0.12]*** −0.33 [−0.35, −0.15]*** −0.01 [−0.12, 0.11] 0.03 [−0.09, 0.15] 0.003 [−0.11, 0.11]
DAWBA Depressiona −0.28 [−0.38, −0.14]*** −0.29 [−0.36, −0.14]*** −0.22 [−0.32, −0.07]*** −0.18 [−0.29, −0.04]** −0.15 [−0.24, −0.01]*
Model fit F(6, 180) = 13.69, p < 0.001***, F(6, 180) = 14.47, p < 0.001***, F(6, 180) = 4.45, p < 0.001***, F(6, 180) = 4.96, p < 0.001***, F(6, 169) = 11.74, p < 0.001***,
2
( Radj ) η p2 = 0.59 (29.0%) η p2 = 0.60 (30.3%) η p2 = 0.53 η p2 = 0.54 (11.3%) η p2 = 0.59 (26.9%)
(10.0%)

CI: confidence interval; SRS-2: Social Responsiveness Scale–Second Edition; β: standardised regression coefficient [95% confidence intervals]; F: F test for model significance (degrees of freedom, sample size); η p2 : partial eta-squared
effect size. Residuals from regression models were approximately normally distributed and collinearity diagnostics suggested no multicollinearity between variables.
a
DAWBA scores were based on: Model a) multi-informant N = 58; self N = 107; parent N = 8; Model b) multi-informant N = 94; self N = 6; parent N = 207.
*p < 0.05, **p < 0.01, ***p < 0.008 (significant after Bonferroni correction; p = 0.05/6). The significance of bold values is ***p < 0.008.
Autism 00(0)
Oakley et al. 9

Anxiety symptoms were also significantly associated with understanding the strengths and protective factors that pro-
reduced physical/psychological Comfort in this age group mote good QoL for some autistic individuals could inform
(β = −0.33, p < 0.001, 95% CI for β: [−0.35, −0.15]), hold- best practice for improving QoL in those for whom it is
ing other factors constant. reduced. For instance, access to social support and engag-
Furthermore, both anxiety (β = −0.28, p < 0.001, 95% ing in leisure activities and physical exercise have been
CI for β: [−0.34, −0.12]) and depression symptoms shown to promote good QoL for some autistic people
(β = −0.28, p < 0.001, 95% CI for β: [−0.38, −0.14]) sig- (Bishop-Fitzpatrick et al., 2017; Hamm & Yun, 2019;
nificantly contributed to decreased overall Satisfaction and Mason et al., 2018; Renty & Roeyers, 2006). Overall, the
depression symptoms to reduced Resilience (β = −0.22, investigation of individual differences in this study was
p = 0.003, 95% CI for β: [−0.32, −0.07]). aided by the multi-domain structure of the QoL instruments
In terms of core autism traits, higher SRS-2-rated diffi- administered, which are invaluable for informing individu-
culties were significantly related to decreased QoL on the alised intervention and support, since they identify what a
CHIP-CE Satisfaction (β = −0.22, p < 0.001, 95% CI for β: good outcome means for each individual and the specific
[−0.37, −0.08]) and Achievement domains (β = −0.34, areas they may be struggling most (Coghill et al., 2009).
p < 0.001, 95% CI for β: [−0.48, −0.20]).
Finally, considering demographic factors, higher IQ
Associated symptoms negatively impact QoL in
was significantly related to higher scores on the
Achievement domain (β = 0.34, p < 0.001, 95% CI for β: autism, across development
[0.22, 0.50]) and older age with decreased Resilience Accordingly, though some autistic individuals report a QoL
(β = −0.23, p = 0.002, 95% CI for β: [−0.39, −0.09]) but comparable to the majority of neurotypical individuals, it is
increased Risk Avoidance (β = 0.24, p < 0.001, 95% CI for important to understand the clinical determinants driving
β: [0.11, 0.40]). All these effects survived Bonferroni cor- reduced QoL for those who do not. Results of this study
rection – additional, nominally significant results (p < 0.05 showed that, across ages and different QoL measures (i.e.
threshold) are flagged in Table 3. Supplementary analyses adults and children/adolescents; WHOQoL-BREF and
including SSP-rated sensory processing and DAWBA- CHIP-CE), higher severity of depression symptoms was sig-
rated ADHD symptoms for the child/adolescent group are nificantly related to reduced QoL in individuals with ASD.
presented in Supplementary Table 3. Most notably, depression symptoms were strongly related to
both physical and psychological well-being in adults
(WHOQoL-BREF Physical/Psychological Health domains)
Discussion and children/adolescents (CHIP-CE Comfort domain).
These findings are consistent with previous reports
Individual variability in QoL in autism from general population samples, showing that depres-
This study is one of the first to demonstrate individual sion symptoms are a key driver of QoL reductions
variability in QoL in autism, alongside group-level com- (Rapaport et al., 2005; Roberts et al., 2014). In addition, it
parisons, across children, adolescents and adults, includ- is noteworthy that depression symptoms were associated
ing those with mild intellectual disability. At the group with physical, as well as psychological, well-being across
level, QoL was significantly lower for autistic individuals, age groups. Higher rates of physical health problems,
across all age groups, than comparison individuals. The such as epilepsy, gastrointestinal issues and inflammatory
area of QoL most reduced for autistic adults was physical conditions, have been reported in ASD, as compared to
health and, for children and adolescents, school achieve- the general population – likely underpinned by genetic
ment. Yet, analyses also revealed that, at the individual and other biological factors (Bauman, 2010; Croen et al.,
level, a notable proportion of autistic individuals in this 2015). Some physical health concerns commonly associ-
study did not experience reduced QoL. In other words, ated with autism, such as weight gain and sleep distur-
many autistic individuals (36%–71% across QoL domains) bance, may also be elevated as a side effect of medication
reported, or were reported to have, a good QoL (according use (Howes et al., 2018). Nonetheless, the increasingly
to thresholds on the subjective QoL measures utilised here) acknowledged interconnection between mental and physi-
– emphasising the importance of accounting for subjective cal health indicates that mental health symptoms, like
satisfaction when assessing outcomes in autism (Henninger depression, may exacerbate physical health concerns and
& Taylor, 2012). vice versa (Firth et al., 2019). Furthermore, mental health
Our findings extend reports of individual variability in problems may present a barrier to accessing services (e.g.
objective QoL in autism (Billstedt et al., 2011; Bishop- anxieties around healthcare settings, mental health per-
Fitzpatrick et al., 2016; Howlin et al., 2004), highlighting ceived as ‘challenging behaviour’), increasing unmet
that variability is also prominent for subjective QoL. healthcare needs (Doherty et al., 2020; Mason et al., 2018;
Therefore, group-level findings reported in QoL studies Nicolaidis et al., 2013). Therefore, a targeted focus on
cannot be generalised to all autistic individuals. Moreover, improving mental health for autistic individuals may also
10 Autism 00(0)

aid in the wider management of physical health concerns lowest well-being. This pattern of results was true after
commonly experienced in autism and individuals’ subjec- holding co-occurring anxiety and depression symptoms
tive satisfaction with their physical well-being. constant, which is important to note since social function-
Further to depression symptoms, in the child/adolescent ing can be impacted by mental health (e.g. anxiety/low
group, we also identified relationships between anxiety mood leading to social difficulties; Cuve et al., 2018) and
and ADHD symptoms with QoL. First, increasing anxiety vice versa (e.g. social withdrawal leading to anticipatory
symptoms were significantly related to lower physical/ anxiety/loneliness; Bellini, 2006; Hedley et al., 2018).
psychological well-being and poorer overall satisfaction in School settings are often large, complex social and sen-
this age group. Second, higher ADHD symptom severity sory environments, which can be challenging for some
was related to significantly reduced risk avoidance young people on the autism spectrum. Many autistic young
(Supplementary Table 3). It is possible that the relation- people face peer victimisation and bullying and report dif-
ships between associated symptoms and QoL reported ficulties managing the pressures of the classroom environ-
here may be equally applicable to other neurodevelopmen- ment (e.g. too fast-paced) and barriers for good
tal conditions. For example, in accordance with the current communication with teachers (Sproston et al., 2017; van
report, a previous study of children with a primary diagno- Roekel et al., 2010). Although around 71% of British chil-
sis of ADHD showed that ADHD symptom severity was dren diagnosed with ASD attend mainstream school and
strongly, negatively related to risk avoidance and school spend most of their time in educational settings, there are
achievement, also rated by the CHIP-CE (Coghill & currently few consistent, formal regulations in place to sup-
Hodgkins, 2016). Thus, relationships between specific port them (Mandy et al., 2016; National Autistic Society,
symptom dimensions and QoL outcomes may cross diag- 2019). Furthermore, though there is increasing evidence for
nostic boundaries – a hypothesis that requires future the potential effectiveness of school-based interventions to
research including multiple diagnostic groups (e.g. ASD, support autistic young people, many of these are yet to be
anxiety/depressive disorders and ADHD) to be assessed in translated to real-world practice (Anderson et al., 2017;
full. In addition, the fact that we did not identify associa- Sutton et al., 2018). Hence, it is imperative to continue to
tions between anxiety and QoL in the adult group in regres- develop strong research partnerships with schools to
sion models, after holding other factors constant (in robustly evaluate the feasibility and effectiveness of diverse
contrast to some previous reports; Lin & Huang, 2019; educational strategies for improving the QoL outcomes of
Smith et al., 2019), may further highlight the importance young people on the autism spectrum.
of considering the role and impact of depression symptoms For the adult group, we found less convincing evidence
for autistic adults. For instance, associations between anxi- for relationships between core autism traits and QoL than in
ety and QoL could be partly mediated by co-occurring children/adolescents, overall. A simple explanation for this
depression in some autistic adults, yet depression symp- could be that the areas of QoL most affected by autism
toms have rarely been assessed in previous reports. traits in our children/adolescent group (e.g. school achieve-
As noted in the introductory section, previous studies ment) are not reflected in the WHOQoL-BREF, or that the
that have also demonstrated significant associations adult group did not include individuals with IQ < 75 (who
between depression and QoL in autism have focused on may also present with more prominent autistic traits).
individuals who meet diagnostic threshold for mental However, it is also possible that some autistic individuals
health symptom severity and/or are recruited from clinical develop coping strategies for their difficulties associated
settings (Mason et al., 2018, 2019; Park et al., 2019). The with autism, but become more vulnerable to mental health
current findings demonstrate that symptoms which do not problems across development. For instance, core autism
meet threshold for a clinical diagnosis can still have a traits generally become apparent within the first 2–5 years
notable impact on QoL, and therefore subtle/subthreshold after birth. In contrast, associated symptoms, particularly
indications for mental health in autistic individuals need to depression, seem to emerge most commonly from late
be routinely screened for and evaluated carefully. childhood and early adolescence (Ghaziuddin et al., 2002;
Mayes et al., 2011; van Steensel et al., 2011). Indeed, clini-
Core autism traits are associated with aspects cal observations indicate that a proportion of autistic adults
develop strategies to manage or ‘camouflage’ (i.e. mask)
of QoL in children/adolescents with autism their difficulties associated with autism. In the long term,
Aside from associated symptoms, there was some evi- camouflaging requires high emotional and physical exer-
dence for a relationship between core autism traits and tion – a previously reported risk factor for depression sever-
QoL in this study, most prominently in children and ado- ity in autistic adults (Hull et al., 2017; Lai et al., 2017).
lescents. For instance, higher social-communication diffi- If valid, this interpretation implies that a decrease in
culties were associated with decreased overall satisfaction severity of difficulties associated with autism should not
and school achievement – the QoL domain within which be equated with QoL improvement, in the absence of direct
children/adolescents were also reported to experience the QoL measurement. Indeed, intervention success is often
Oakley et al. 11

assessed according to proximal outcomes (e.g. symptom because different questionnaire measures were indexing
reduction). However, more distal outcomes (e.g. QoL) the same, or similar, experiences. However, from a theo-
tend to suggest fewer treatment gains in the areas of every- retical perspective, the wide-ranging areas of everyday life
day functioning that may be particularly important to and well-being that constitute QoL go beyond core psychi-
many autistic people and their families (Fletcher-Watson atric diagnostic criteria. In support of this, it should be
& McConachie, 2015; McConachie et al., 2015). For noted that associations were apparent between depression
example, though cognitive behavioural therapy (CBT) is symptoms and three out of four QoL domains of the
the most widely supported intervention approach for man- WHOQoL-BREF in autistic adults, not just the psychologi-
aging anxiety symptoms in autism (Kreslins et al., 2015; cal health domain. Similarly, depression symptoms were
Sukhodolsky et al., 2013; White et al., 2018), improve- related to overall satisfaction in children/adolescents, in
ments in QoL following CBT are not consistently identi- addition to physical/psychological health. This would sug-
fied (Flygare et al., 2020; van Steensel & Bogels, 2015). gest that the impact of depression symptoms on QoL in
Nevertheless, given that mental health symptoms in autism is more generalised, rather than specific to issues
ASD can be modified by interventions, including CBT and directly reflecting mental health.
mindfulness-based therapies (Gaigg et al., 2020), targeting A second limitation is that a self-report QoL measure
these symptoms may hold potential for improving broader was administered for adults without intellectual disability
QoL outcomes. As research efforts to modify and develop and a different parent-report measure for children and ado-
novel interventions for improving mental health for autis- lescents (including those with intellectual disability),
tic people evolve (see Cooper et al., 2018; Russell et al., meaning results from the adult and child/adolescent sam-
2019), our findings suggest that QoL is an informative out- ples were not directly comparable. Previous research sug-
come measure, beyond symptom severity. In further sup- gests that parents tend to rate the QoL of their son or
port of this, there is existing evidence that diverse outcomes daughter lower than their son or daughter would rate them-
measures in autism may have different contributing fac- selves (Hong et al., 2016; Jonsson et al., 2017) and differ-
tors. For instance, previous data from the LEAP cohort ent QoL measures use different item wordings for QoL
have shown that parent-rated adaptive functioning (i.e. the domains. The lack of direct comparability of QoL meas-
ability to respond to ‘normative’ societal demands, such as ures across age groups in currently available QoL tools
socialisation with peers and everyday skills like washing/ may reflect that priorities and concerns naturally evolve
dressing) was predicted by core social-communication dif- across development and particular outcomes (e.g. ability
ficulties but not co-occurring mental health symptoms to complete schoolwork) are age-specific (Jonsson et al.,
(Tillmann et al., 2019), whereas here we demonstrate that 2017). Partly as a result of methodological challenges per-
subjective QoL is strongly associated with mental health. taining to age and development, there are currently few
These contrasting findings highlight the need for multiple widely validated QoL measures for autistic individuals,
measures of outcome in autism. Within such a framework, particularly for those with mild intellectual disability and
QoL tools have the potential to inform individualised where novel measures are being developed, they are cur-
approaches by indicating which outcomes are most mean- rently designed for specific age groups (e.g. adults only).
ingful for each person and the areas in which they may be The development of validated and robust QoL tools, acces-
experiencing most difficulties, thereby indicating primary sible for individuals with difficulties in reading compre-
intervention targets – for example, managing physical hension and/or speech and language, is thus an important
health problems or prioritising school-based support. area for future research (Ayres et al., 2018; McConachie
et al., 2018). Despite this limitation, we identified a similar
effect of depression symptom severity on physical and
Strengths and limitations
psychological well-being, across ages and different QoL
This study has a major strength in its heterogeneous sample measures. In addition, it was possible to collect self-report
of well over 500 males and females with and without autism, data from autistic adults with IQ > 75 in this study, further
across developmental stage (6–30 years) and of a wide IQ supporting that self-report tools are a valid method for
range (50–148). These sample characteristics made it pos- assessing subjective QoL in ASD (Shipman et al., 2011).
sible to establish that associated symptoms, particularly
depression, are related to specific QoL outcomes in autism,
Conclusion
across all developmental stages and levels of functioning.
Nevertheless, we also note some limitations. At the group level, average QoL ratings were significantly
First, some authors have suggested that there may be lower for autistic than comparison individuals, particularly
overlap between measures of mental health symptoms and for physical health in adults and school achievement in
QoL measures (Coghill et al., 2009). In other words, it is children and adolescents. This indicates that physical well-
possible that associations between anxiety and/or depres- being and school support are key priorities for clinical
sion symptoms with psychological well-being were present research and practice, in the context of autism. Nevertheless,
12 Autism 00(0)

at the individual level, a notable proportion of autistic indi- in the past 3 years a consultant to/member of advisory board of/
viduals reported a good QoL. Where QoL was reduced, and/or speaker for Janssen Cilag BV, Eli Lilly, Lundbeck, Shire,
this was most consistently accounted for by the severity of Roche, Novartis, Medice and Servier. He is not an employee of
associated mental health symptoms, across age groups and any of these companies and not a stock shareholder of any of these
companies. He has no other financial or material support, includ-
QoL measures. In particular, associated depression symp-
ing expert testimony, patents and royalties. E.S. receives support
toms impacted both physical and psychological well-being
from the National Institute of Health Research (NIHR) Programme
in children, adolescents and adults on the autism spectrum. Grant for Applied Research, a Senior Investigator Award and
In children and adolescents, anxiety, ADHD and core through the NIHR South London and Maudsley NIHR Biomedical
social-communication difficulties were also related to spe- Research Centre. She also receives funding from the European
cific QoL outcomes. Taken together, these findings show Medicine Innovative Medicines Initiative (EU-AIMS), the
that associated symptoms, particularly depression, must be Medical Research Council, the Economic and Social Research
specifically evaluated and targeted in order to improve the Council, Autistica and the Maudsley Charity. D.M. receives con-
QoL outcomes of autistic people across development, sultancy fees from F. Hoffmann-La Roche and is also supported by
using individualised approaches. the NIHR Biomedical Research Centre. The views expressed are
those of the authors and not necessarily those of the NHS, the
NIHR or the Department of Health and Social Care. There are no
Acknowledgements
other declarations.
We thank all participants and their families for their time and
effort in participating in the study. We also acknowledge the con- Funding
tributions of the EU-AIMS Consortium: Jumana Ahmad, Sara
Ambrosino, Bonnie Auyeung, Simon Baron-Cohen, Sarah The author(s) disclosed receipt of the following financial support
Baumeister, Christian Beckmann, Sven Bölte, Thomas for the research, authorship, and/or publication of this article:
Bourgeron, Carsten Bours, Michael Brammer, Daniel Brandeis, This study received support from two EU IMI initiatives (EU
Claudia Brogna, Yvette de Bruijn, Bhismadev Chakrabarti, Ineke AIMS and AIMS-2-TRIALS). EU-AIMS received support from
Cornelissen, Flavio Dell’ Acqua, Guillaume Dumas, Christine the IMI Joint Undertaking (JU) under grant agreement no.
Ecker, Claire Ellis, Jessica Faulkner, Vincent Frouin, Pilar 115300, resources of which are composed of financial contribu-
Garcés, David Goyard, Hannah Hayward, Joerg Hipp, Mark H. tion from the European Union’s Seventh Framework Programme
Johnson, Prantik Kundu, Meng-Chuan Lai, Xavier Liogier (FP7/2007–2013), from the European Federation of
D’ardhuy, Michael Lombardo, David J. Lythgoe, René Mandl, Pharmaceutical Industries and Associations (EFPIA) companies’
Luke Mason, Andreas Meyer-Lindenberg, Carolin Moessnang, in-kind contribution, and from Autism Speaks. AIMS-2-TRIALS
Nico Mueller, Laurence O’Dwyer, Marianne Oldehinkel, Bob receives funding from the Innovative Medicines Initiative 2 Joint
Oranje, Gahan Pandina, Antonio M. Persico, Barbara Ruggeri, Undertaking under grant agreement no. 777394. This Joint
Amber Ruigrok, Jessica Sabet, Roberto Sacco, Roberto Toro, Undertaking receives support from the European Union’s
Heike Tost, Jack Waldman, Steve C.R. Williams, Caroline Horizon 2020 research and innovation programme and EFPIA
Wooldridge and Marcel P. Zwiers. and Autism Speaks, Autistica, SFARI.

Declaration of conflicting interests ORCID iDs

The author(s) declared the following potential conflicts of interest Bethany FM Oakley https://orcid.org/0000-0002-1968-134X
with respect to the research, authorship and/or publication of this Tony Charman https://orcid.org/0000-0003-1993-6549
article: B.F.M.O. was supported by a studentship award from the
Tobias Banaschewski https://orcid.org/0000-0003-4595-1144
Sackler Institute for Translational Neurodevelopment during this
project. A.S.J.C. is a consultant for Servier Laboratories and is Emily Simonoff https://orcid.org/0000-0002-5450-0823
involved in clinical trials conducted by Servier. The present work
is not associated with this relationship. T.C. reports grants from Supplemental material
Innovative Medicines Initiative, during the conduct of the study; Supplemental material for this article is available online.
grants from Medical Research Council; grants from National
Institute of Health Research; grants from MQ; grants from
Autistica; grants from Charles Hawkins Fund; grants from The
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