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Stress factors in parents of children on the autism
spectrum: an integrative model approach
REVIEW
Joana Prata1,2, Wenn Lawson3 and Rui Coelho1,2
1Department of Clinical Neurosciences and Mental Health, Faculty of Medi-
cine, University of Porto, Porto, Portugal
2i3s - Instituto de Investigação e Inovação em Saúde, Porto, Portugal
3ACRC, Long Pocket Campus, University of Queensland, Brisbane, Australia
Correspondence: Joana Prata
Department of Clinical Neurosciences and Mental Health, Faculty of Medicine,
University of Porto, Alameda Prof. Hernâni Monteiro, 4200-319 Porto, Portugal
E-mail address: joanappr@gmail.com
Abstract
Autism is a neurodevelopmental condition with biological, genetic, environmental and developmental causes whose
prevalence has suffered substantial increase over the last decades. Children on the autism spectrum (AS) face unique
challenges that arise from their difficulty in understanding social behavior and interaction, difficulty in understanding
and effectively using communication, and difficulty with having reduced flexibility of thought and behavior. A large
number of studies have reported that parents of children on the AS experience higher levels of stress when compared
to parents of typically developing children and children with other developmental disabilities. Such stress levels are
dependent on a number of factors which seem to be interrelated and complex. In this review we divided these factors
into parent characteristics, child characteristics, family support system, social support/socioeconomic status and pro-
fessional support, proposing an integrative model for understanding parental stress.
Keywords: Autism spectrum, Parent stress, Stress factors.
Citation: Prata et al. Stress factors in parents of children on the autism
spectrum: an integrative model approach. International Journal of Clinical
Neurosciences and Mental Health 2019; 6:2
DOI: https://doi.org/10.21035/ijcnmh.2019.6.2
Received: 05 Mar 2018; Accepted: 30 Jan 2019; Published: 16 Mar 2019
© 2019 Prata et al. This is an open access article distributed under the Creative Commons Attribution
License, which permits unrestricted use, distribution, and reproduction in any medium, provided the
original work is properly cited.
Open Access Publication Available at http://ijcnmh.arc-publishing.org
INTERNATIONAL JOURNAL OF
AND
CLINICAL NEUROSCIENCES
MENTAL HEALTH
Stress factors in parents of children on the autism spectrum
2
ARC Publishing
Introduction
Autism is nowadays regarded as a neurodevelopmental
condition with biological, genetic, environmental and de-
velopmental causes. Substantial increase in the estimated
prevalence of autism has been reported over the last de-
cade. The median of prevalence estimates is 62/10,000
worldwide [1], with a prevalence of 1 in 68 children aged
8 having been reported in the United States [2]. Since the
early references of autism in literature, its definition has
evolved over the years and been included in international
and recognized diagnostic manuals. The current Diagnos-
tic and Statistical Manual of Mental Disorders (DSM-5,
2013) uses the term autism spectrum (AS) to encompass
the previous diagnoses of autistic disorder, Asperger’s dis-
order, childhood disintegrative disorder and pervasive de-
velopmental disorder present in the DSM-IV, thus adopt-
ing a dimensional approach and differentiating between
individuals by dimensions of severity and associated fea-
tures. The term autism spectrum will be used throughout
this paper to include all individuals within the spectrum,
avoiding unnecessary categorization unless otherwise
specified by the cited studies.
Children on the AS face challenges that arise from their
difficulty in understanding social behavior and interaction,
difficulty in understanding and effectively using commu-
nication, and difficulty with having reduced flexibility of
thought and behavior [3]. Most children on the AS pres-
ent challenges in these areas (to a greater or lesser extent)
and many also experience sensory perceptual differences
such as hyper or hyposensitivity, fragmented and distorted
perception, delayed perception and sensory overload [4],
which impact the way they relate to other people and the
world around them.
A large number of studies have reported that parents of
children on the AS experience higher levels of stress when
compared to parents of typically developing children [5,
6] and children with other developmental disabilities [7,
8]. Parents of children on the AS face unique challenges
and their ability to deal with higher stress levels depends
on multiple factors. This paper is a review into current
research regarding stress factors in parents of children on
the AS. We conducted a non-systematic literature review
using databases such as Pubmed, Web of Science and the
University of Birmingham database. Keyword searches
were performed to retrieve relevant information that has
been published in English over the last 15 years. Additional
studies cited in reference lists and books in the autism field
with relevance to the topic were also included (even if pub-
lished at an earlier date).
The diasthesis-stress model is a psychological theory that
explains behavior as a result of an interaction between in-
dividual vulnerability (diasthesis) and environmental stress
(life events). The model explains how multiple factors in-
teract in the individual experience of stress and provides a
holistic framework for understanding parental stress. It has
been used in many areas of psychology to explain how indi-
viduals develop psychopathology, but was first used to ex-
plain the development of schizophrenia in the 1960’s. The
term diasthesis derives from the Greek term ‘vulnerability
or predisposition’ which can be a genetic, psychological, bi-
ological or situational factor. This model asserts that if the
combination of the individual vulnerability and the experi-
enced stress exceeds a certain threshold, the person can de-
velop a psychological disorder such as depression or anxiety.
Lazarus [9] described stress as an external load or demand
on a biological, social or psychological system. Appraisal is
the process by which the individual evaluates the signifi-
cance of what is happening in terms of his/her well-being.
Individuals vary in how they evaluate the situation, that is,
the meaning of the situation is influenced by personality
characteristics but also by individual beliefs and motives (9).
In that sense, what one individual would regard as stressful
another might not. On the other hand, coping is the process
by which an individual makes an effort (either in thought or
action) to manage the situation which he has evaluated as
challenging or demanding. Coping is highly contextual and
in order to be effective it must change over time and accord-
ing to different situations (what might be effective in one
situation might be counterproductive in another).
When appraisal determines that something can be done
to change the situation, problem-focused coping occurs
and coping actions are directed at changing the individu-
al’s relationship with the environment. On the other hand,
when appraisal determines that nothing can be done, emo-
tion-focused coping occurs and the individual changes the
way in which he attends to or interprets what is happen-
ing [9]. Coping strategies are complex and some are more
stable and dependent on personality characteristics (for
example, thinking positively) while others are less stable
and more dependent on social context (for example, seek-
ing social support). Also, when the type of stressor is held
constant (work, health or family related stress), it seems
that women and men show very similar coping strategies
[9]. Finally, protective factors are important when consid-
ering the interaction between the diasthesis and the stress-
ful event. Factors such as a good social network or family
support system, or individual emotional competence (and
certain personality characteristics) can help reduce the im-
pact of negative events in an individual’s well-being.
Several studies have measured stress in parents of chil-
dren on the AS, and several factors have been associated
with parental stress indices. For the purpose of this review
we have divided factors linked to parental stress into the
following categories: parent characteristics, child charac-
teristics, family support system, social support and socioec-
onomic status, and professional support (Figure 1).
Parent characteristics
Parent characteristics include factors that are solely de-
pendent on the parent, whether biological (genetic, phys-
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Prata et al.
International Journal of Clinical Neurosciences and Mental Health 2019; 6:2
Genetics
Psychological adjustment
Beliefs about AS
Physical health
Parent
characteristics
Child
characteristics
Family support
system
Social support
and
socioeconomic
status
Professional
support
Age
Age at diagnosis
Severity /behavior
problems
Relationship satisfaction
Assistance in child care
Number of children with
disability
Social support
Financial burden
Other peoples’ perceptions
about AS
Stress
experienced
by parent
Figure 1. Integrative model of factors that influence parent stress
Access to treatment
/professionals
Parent education
programs
Figure 1. Integrative model of factors that inuence parent stress.
ical health) or psychological (psychological adjustment
and individual beliefs). It is nowadays known that the
AS is highly heritable with a remarkable genetic hetero-
geneity with several hundred predisposition genes hav-
ing been identified to date [10]. In an interesting paper
by Baron-Cohen [11], the author calls attention to the
complexity of the genetics of autism but particularly on
the possibility that genes contributing to autism might
overlap with other genes that confer a unique ‘ability to
understand how the world works in detail—to see beauty
in patterns inherent in nature, music and math’ [11]. Still
according to Baron-Cohen [11] systematizing is the drive
to analyze or construct a system (whether it is mechanical,
natural or abstract), understanding the rules that govern
that system making it predictable. Genes responsible for
autism could be co-inherited with genes that determine
cognitive talents common in people on the AS and techni-
cal minded individuals. In that sense, the author has found
that children and adults (on the Asperger side of the AS)
score higher on self-report and parent report measures
of systematizing, and on a test of attention to detail. Fur-
ther, parents of children with autism were faster and more
accurate on a test of attention to detail than parents of
typically developing children. Some studies have also sug-
gested that there is a genetic link between mood disorders
and the AS [12] and also a genetic link between parental
depression and having a child on the AS [13].
Another factor which appears to influence parent stress
is the existence of an illness or disability. Parents who had
an illness or disability reported significantly higher anx-
iety, depression and stress levels than parents who were
healthy and/or did not have a disability [14]. Also, in a lat-
er study the authors found similar findings, with higher
anxiety and depression levels being reported by parents
who had a physical disability or illness/disorder [15].
Parental beliefs and concerns regarding the care the
child receives, also seems to influence anxiety and depres-
sion levels. In their study, Bitsika and Sharpley (2004) found
parents’ perceptions regarding the expertise of the family
caregiver were contributing factors, in that higher anxiety
and depression levels were reported by parents who had a
poor perception of the caregivers’ expertise. In fact, in this
study, nearly half of parents had severe anxiety levels and
nearly two-thirds were clinically depressed (according to
Zung’s criteria) which was about four to five times greater
than levels reported for the general population. Despite the
lack of direct comparability due to the demographic nature
of both samples [14, 15] the authors state the greater in-
dices of clinical anxiety and depression found in the 2004
study might be explained by the fact that parents in the ear-
lier study had children who had been diagnosed at an earlier
age, accessed respite care more frequently and had greater
family support in caring for the child. Zhou and Yi (2014)
also reported that parents perceived that their own emo-
tions influenced the emotional reactions of the children as
well as their own symptoms [16].
Sense of coherence (SOC) is conceptualized as a way of
perceiving life events that an individual brings to differ-
Stress factors in parents of children on the autism spectrum
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ent situations. It encompasses a feeling of confidence that
the stimulus is comprehensible, that resources are availa-
ble to meet demands (the stimulus is manageable) and the
demand or challenge is worth investing in (is meaningful)
[17]. Sense of coherence may act as a general resilience to
stress or as a precursor to other cognitive processes specific
to a particular situation, and it has been inversely associat-
ed with depression and anxiety [18], and directly associat-
ed with psychological health and well-being [19-21]. In a
study with parents of children with developmental disabil-
ities, SOC was inversely related to parental depression [22]
whilst in another study [23], the parents’ level of SOC was
predictive of their children’s perceived competence and re-
duced behavioral problems.
Parenting confidence and child acceptance have also
been associated with lower parenting stress [21]. Parent-
ing confidence refers to the perception that parents have of
themselves as parents. On the other hand, child acceptance
refers to how parents understand and accept their child’s
behavior and feelings, are happy with their child and see
their child as an independent individual. In their study of
mothers of children on the AS, the authors [21] found that
SOC moderated the effect of symptom severity on stress.
Symptom severity was associated with increased levels
of stress in mothers with low SOC. On the other hand,
mothers with a strong SOC perceived lower stress even
when their children presented with more severe autistic
symptoms. Also, mothers with a higher SOC showed more
confidence and greater acceptance which in turn related
to lower parenting stress. The authors also found that a
negative perception of the child’s disability was associated
with high levels of parenting stress [21].
Certain aspects of parental mental health have been
found to impact child outcome. Specifically, parent de-
pression may contribute to less parental responsiveness
with the child during play, which in turn, is associated
with decreased child engagement, social interaction, and
socio-emotional functioning [24]. Decreased parental re-
sponsiveness has also been associated with delay in lan-
guage development and joint attention [25]. Nock and Ka-
zdin (2001) found that high levels of parenting stress and
depression were associated with low expectations regard-
ing treatment, which in turn predicted greater obstacles
throughout the treatment process, lower attendance, and
early termination of therapy [26].
Child characteristics
Several characteristics which are related to the child have
been associated with increased parent stress and reduced
well-being, namely, core autism symptoms (social com-
munication impairments and repetitive behaviors), poor
cognitive and adaptive skills, and emotional and behavioral
difficulties [27]. Both higher levels of AS symptoms and se-
verity of impairment have been associated with higher lev-
els of parent stress [28]. Several studies have consistently
found that child behavior problems contribute to increased
parent stress [29, 30]. Lecavalier et al., (2006) found that a
specific group of externalized behaviors, such as conduct
problems were strongly associated with caregiver stress. In
the study by Bitsika and Sharpley (2004) most of the par-
ents considered behavioral difficulties to be the most chal-
lenging, followed by cognitive/learning difficulties, poor
communication skills and lack of independence. About one
in five parents rated their self-confidence in dealing with
such daily behavioral issues as low. Over 90% of parents
felt unable to deal with these issues and felt ‘stretched be-
yond their limits’ with nearly 40% of parents stating that
they felt like that about every three days [15]. Poor expres-
sion of affect and little interest in people also contributed
to maternal stress levels [31] and another study found that
social interaction skills independently predicted maternal
child-related stress in mothers of AS children [32].
The subtypes of AS diagnoses have also been linked
to different parent stress levels. In a study by Mori et al.,
(2009) [33] parents of children with Asperger’s reported
the highest levels of stress and in another study [34], par-
ents of children with autism reported higher levels of stress
than those of children with pervasive developmental dis-
order (not otherwise specified). Higher autism symptom-
atology and a greater number of co-occurring psychiatric
disorders (in the child) were associated with an increased
risk for current treatment of maternal depression and
lower maternal quality of life [35]. Blatcher and McIntyre
(2006) examined whether behavior problems and adaptive
behavior of low functioning young adults, and well-being
of their families, varied by diagnostic group (intellectual
disability only, cerebral palsy, Down syndrome, autism).
Even though they found that autism was associated with
the highest scores in multiple behavior problem areas and
lower maternal well-being, when behavior problems were
controlled for there was no additional variance in maternal
stress or depression by diagnostic groups [36]. Other stud-
ies did not find an association between autism severity and
stress levels in caregivers [27, 37]. On the other hand, the
association between higher rates of child emotional and
behavioral problems and poorer parental psychological
well-being are more consistent [30, 38, 39].
Age of the child has been associated with parent stress,
and it has been suggested that parents of older children
have higher levels of stress when compared to parents of
younger children [40]. It could be that the maturational
changes that occur in middle childhood combined with
increased exposure to social situations, demand major ad-
justments in parents’ expectations which, in turn, may be
associated with higher risk for stress [27, 41]. Also, the age
of diagnosis has been associated with parent stress. Gray
and Holden (1992) found a later diagnosis to be associat-
ed with higher depression levels [42]. Another study [43]
found that parents of children who had been diagnosed
for 1 to <2 years reported a higher caregiving burden than
others (<1 and ≥2 years since diagnosis) [43] and according
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Prata et al.
International Journal of Clinical Neurosciences and Mental Health 2019; 6:2
to Zablotsky et al., (2013) [44], mothers of older children
were less likely to be receiving treatment for depression.
However, other studies have found no significant effects
according to age of diagnosis or age of the child [14].
Family support system
Family factors are also probable determinants of parental
stress, and include aspects such as satisfaction with rela-
tionships (marital or family), assistance in caring for the
child and parents’ perceptions regarding the expertise of
other family caregivers. Parents of children on the AS face
unique caretaking challenges within these complex and
important relationships, and tend to report less marital
satisfaction compared with married parents of typically
developing children [45]. According to Gau et al., (2012)
lower dyadic consensus, or agreement between parents,
and lower levels of positive affective expression contribute
to decreased marital satisfaction in parents of AS children.
Importantly, divorce rates seem to be twice as high in fam-
ilies with children on the AS compared to families with
typically developing children [46].
In a study with mothers of children on the AS, the
authors studied the contributions of child behaviors, par-
enting stress and relationship satisfaction to maternal
depressive symptoms [47]. Although diagnostic severity
and behavior problems significantly predicted depressive
symptoms, relationship satisfaction and parental distress
did so above and beyond child characteristics. Also, re-
sults suggested that relationship satisfaction may buffer
(to some extent) the impact of parent stress on maternal
depression [47]. Importantly, caregiver depression can not
only impact day to day family life but also limit interven-
tion access and benefit [48].
In a study by Sharpley et al., (1997) parents with access
to other family members for assistance in caring for their
child had lower stress levels than parents who did not have
such assistance. Lower levels of anxiety and depression
were found in parents who considered that family mem-
bers who gave assistance had a clear understanding of the
child’s needs and difficulties. This was replicated in a later
study [15] where the authors found that parents’ percep-
tions regarding the expertise of the family caregiver con-
tributed to anxiety and depressive symptoms, with higher
anxiety and depressions levels being present in parents
who had poor perceptions. In another study family sup-
port was associated with increased psychological well-be-
ing in mothers of children on the AS [49].
The number of children with a disability in the family
is also an important factor in parent stress [50] and Ku-
hlthau et al., (2014) reported that families with more than
two children with special needs had lower health-related
quality of life and higher caregiver burden and depression.
Whether the child attended a special school or not was a
significant factor in determining parents’ daily stress in the
Bitsika and Sharpley (2004) study. The reduction in the
care that can be provided to other siblings, when there is
a child on the AS in the family, has also been reported as a
factor that contributes to parent stress [40].
Social support and socioeconomic status
Social support is a critical factor in reducing the negative
psychological impact of raising a child on the AS or oth-
er developmental disabilities [49, 51]. Social support has
been shown to be associated with decreased psychological
distress [52, 53], reduced feelings of depression, improved
overall mood, and decreased parenting stress [49], as well
as increased parenting efficacy [54] in parents of children
on the AS [55].
Informal social support, such as the support received
from friends and family, reduces stress among mothers of
children with AS. In a study by Ekas et al., (2010), the au-
thors evaluated how each source of support (spouse, family
and friends) related to optimism and maternal well-being.
Each source of social support was associated with lower
levels of depression, negative affect, and parenting stress.
Further, while support from spouse was associated with
increased life satisfaction and psychological well-being,
support received from friends was associated with in-
creased life satisfaction, positive affect, and psychological
well-being. On the other hand, support received from oth-
er family members was associated only with increased psy-
chological well-being. The authors also found that higher
levels of optimism were associated with increased positive
outcomes and decreased negative outcomes [49].
Persistent parenting stress has been associated with
lowered perceptions of social support [56] so it could be
that parents might not always be aware of or use available
resources to them [55]. Also, parents of children on the AS
may have decreased social contacts partly because of the
challenges they face but also because the emotional sup-
port and understanding they need may be difficult to find
in families with typically developing children [55]. Other
factors that have been found to contribute to parent stress
are the unlikely remission of behaviors that cause social
criticism and the lack of understanding among the public
about the nature of AS [15].
Financial burden and economic impact is also consid-
ered to be a factor contributing to parent stress [55] and
annual expenses for taking care of children on the AS are
significantly higher than those for non-affected children
[57]. Parents of children with special health care needs are
at increased risk for not being employed and having finan-
cial stress [43, 58, 59]. In a study by Kuhlthau et al., (2014)
where parent health-related quality of life was studied on
a quantitative and qualitative perspective, the majority of
parents reported direct and indirect financial strains re-
lated to parenting a child on the AS; over half of parents
reported at least some problems with combining care tasks
with daily activities and financial problems because of care
tasks; and many parents referred to the inability to work
Stress factors in parents of children on the autism spectrum
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or difficulty in maintaining a job [43]. Such issues are im-
portant to be considered as they may reduce family income
and social connection due to loss of work.
Finally, the degree of expertise demonstrated by alternate
caregivers in respite care (regarding AS) has been shown to
influence parent stress. Low levels of caregiver expertise
may contribute to parental distress due to poor behavior
management skills and strategies being implemented dur-
ing the parents’ absence, with consequently extra demands
when they resume their primary caregiver roles [15].
Professional support
One of the most significant aspects of the AS is its clin-
ical heterogeneity and diversity, with substantial differ-
ences also being apparent in treatment outcome. Not all
children and families derive the same benefits from similar
interventions and there is little research so far as to what
variables (child or other) predict response to treatment
[60]. In absence of this important information, the choice
of early intervention and education programs by families
and clinicians is largely dependent on factors such as avail-
ability and proximity of services rather than on scientific
information regarding which intervention will result best
taking into account the individual characteristics of the
child and family [60]. In a study by Shepherd et al., (2018),
the authors found that funding was a major determinant
of intervention engagement as was influence from medi-
cal professionals. Also, parental perceptions of their child’s
symptom severity were related to intervention engage-
ment [61]. Understanding why parents choose some in-
terventions over others, which factors influence decisions
and barriers or reasons behind intervention rejection or
discontinuation will result in better service provision [61].
Professionals in clinical settings need to take parents’ con-
cerns about future outcomes into consideration and ad-
dress such concerns, when communicating with families.
Despite the various treatment options available, only a
small proportion of interventions have scientific evidence
of efficacy, and early intensive interventions are currently
recommended as the treatment of choice for children on
the AS. However, evidence also suggests that such pro-
grams are not equally beneficial for all children (60). How
a child on the AS responds to intervention over time is
certainly dependent on numerous variables and possibly
complex interactions between such variables, some of
which are related to the child’s characteristics but also to
the environment they live in. A detailed analysis of these
aspects is beyond the scope of this review. However, refer-
ence to studies regarding the impact of family factors, such
as parent stress, are significant to the subject of this paper.
There have been some reports that parental stress can
predict the developmental level of children with intellectual
disabilities [62] and that high levels of parenting stress can
counteract the effectiveness of early teaching interventions
in children with autism spectrum disorders [48, 63]. Par-
ents are frequently expected to engage alongside therapists
across a variety of interventions which demands a great
amount of time, dedication, energy and financial resource.
Parents are included directly or indirectly in the majority
of interventions even though the intensity, the form and
function of such involvement varies [64]. Alongside this
therapist or coach role, parents are usually the primary car-
egivers for their children and the essential link between
home and school environments.
Parent training and education programs provide par-
ents with information or skills to help them cope with
their child’s particular challenges. Studies on the effects
of such programs have reported decrease in parent stress
and increase in parental confidence and quality of life [65,
66]. Involving parents in the intervention being delivered
to the child on the AS has several benefits. Not only does
it provide increased insight into the individual child but
more easily facilitates the incorporation of therapy into the
child’s own environment, facilitates the generalization of
learned skills and reduces parent stress [67, 68].
Several studies have highlighted that including parents
and other family members in the intervention process can
benefit the whole family, decrease parent mental health
concerns, promote greater parental understanding of their
child’s difficulties, and improve social behavior and com-
munication skills [55, 68, 69]. Further, improved respon-
siveness and emotional regulation, reduced levels of stress
and depression, overall improved mental and physical
health, and greater parenting self-efficacy have also been
described as benefits of parent training programs [68, 70].
Conclusions
Stress in parents of children on the AS is dependent on a
number of factors which seem to be interrelated and com-
plex. For the purpose of this review we have divided these
factors into parent characteristics, child characteristics,
family support system, social support and socioeconomic
status, and professional support and propose an integrative
model for understanding parental stress (Figure 1). The
way in which these factors interact is still not fully under-
stood, and available studies have methodological and statis-
tical limitations that make causal connections and definite
trajectories related to both parent and child well-being dif-
ficult to establish [55]. Further, the heterogeneity of clini-
cal samples and small sample sizes, the lack of longitudinal
studies and randomized controlled trials, the limited avail-
ability of standardized measures for social and non-social
variables, the use of parent-rating measures or self-report,
and the complexity in finding appropriate control groups
makes comparisons across studies difficult [55].
Children on the AS face challenges that require long-
term care, both of which have a profound impact on par-
ents and family. The identification and understanding of
the factors that contribute to parent stress is necessary to
effectively address the psychological needs of parents as
7
Prata et al.
International Journal of Clinical Neurosciences and Mental Health 2019; 6:2
part of any intervention program. If parents feel support-
ed, educated and more confident in their ability to help
their child, they will become better advocates for their
child’s needs and a better foundational support.
Abbreviations
AS: Autism spectrum; DSM-5: Diagnostic and Statistical Manual of
Mental Disorders; SOC: Sense of coherence
Acknowledgements
The preparation of this manuscript was undertaken as part of the Autism
Children Distance Education Programme, at the Autism Center for Edu-
cation and Research, School of Education, University of Birmingham.
Competing interests
The authors declare that there are no conflicts of interests.
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