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Stress factors in parents of children on the autism spectrum: an integrative model approach

  • Departamento de Neurociências Clínicas e Saúde Mental, Faculdade de Medicina da Universidade do Porto, Portugal; i3s - Instituto de Investigação e Inovação em Saúde, Portugal


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Stress factors in parents of children on the autism
spectrum: an integrative model approach
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:
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
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
Stress factors in parents of children on the autism spectrum
ARC Publishing
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-
Prata et al.
International Journal of Clinical Neurosciences and Mental Health 2019; 6:2
Psychological adjustment
Beliefs about AS
Physical health
Family support
Social support
Age at diagnosis
Severity /behavior
Relationship satisfaction
Assistance in child care
Number of children with
Social support
Financial burden
Other peoples’ perceptions
about AS
by parent
Figure 1. Integrative model of factors that influence parent stress
Access to treatment
Parent education
Figure 1. Integrative model of factors that inuence 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
ARC Publishing
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
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
ARC Publishing
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].
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
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.
AS: Autism spectrum; DSM-5: Diagnostic and Statistical Manual of
Mental Disorders; SOC: Sense of coherence
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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... In addition, the symptoms associated with autism impact the daily lives and functioning of all individuals in the home (Bayat, 2007;Hayes & Watson, 2013;McPhilemy & Dillenburger, 2013;Menezes et al., 2021;Shivers et al., 2019). Research indicates that some specific behavioral characteristics of autistic youth are associated with well-being in their family members (Estes et al., 2009;Prata et al., 2019;Ross & Cuskelly, 2006). For example, more severe impairments in social communication and restricted/repetitive behaviors in autistic children and adolescents are associated with poorer caregiver mental health and sibling adjustment (Benson & Karlof, 2008;Davis & Carter, 2008;Estes et al., 2009;Pilowsky et al., 2004). ...
... Research has also shown that lower cognitive functioning and more severe challenging behavior in autistic youth are associated with increased stress in their parents and siblings (Clauser et al., 2021;Estes et al., 2009Estes et al., , 2013Mascha & Boucher, 2006;Ross & Cuskelly, 2006). The need to provide additional supports and accommodations for the autistic individual due to their social-emotional and behavioral challenges (e.g., participation in therapies, communication supports, and consistent daily routines) can be emotionally and financially taxing for family members (Bayat, 2007;Prata et al., 2019). ...
... Much research on autistic youth and their families has focused on stressors (e.g., Bouma & Schweitzer, 1990;Clauser et al., 2021;Griffith et al., 2010;Lee et al., 2009;Prata et al., 2019;Rao & Beidel, 2009;Wolf et al., 1989); far fewer studies have explored resilience processes and positive adaptations to challenges in this population (Riosa et al., 2017). There has been a limited focus on assessing and intervening to promote strengths in autistic individuals and their families (Urbanowicz et al., 2019); however, autistic advocates and scholars contend that autistic individuals and their families have not only limitations, but also strengths (Bayat, 2007;Pellicano & Stears, 2011;Urbanowicz et al., 2019). ...
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The capacity of families with autistic children to demonstrate resilience is a notable strength that has received little attention in the literature. A potential predictor of family resilience in households with autistic youth is neighborhood support. This study examined the relationship between neighborhood support and family resilience in households with autistic youth utilizing data from the National Survey of Children’s Health. A structural equation model was constructed as neighborhood support and family resilience were latent variables. Findings demonstrated that neighborhood support significantly predicts family resilience. This study contributes to the literature as the first quantitative investigation of predictors of family resilience with this group. Strengths of autistic youth, their families, and their communities can be and should be leveraged to address challenges.
... Alguns sintomas podem ser observados ainda no primeiro ano de vida e persistem variando a intensidade ao longo de todo ciclo de vida. O impacto emocional do diagnóstico de autismo é frequentemente identificado como uma variável que desencadeia alto nível de estresse para os pais (Elder et al., 2017;Prata, Lawson & Coelho, 2019). ...
... As pesquisas também demonstram que mães que têm filhos com TEA tendem a apresentar problemas de saúde mental além dos altos níveis de estresse (Goetz, Rodriguez & Hartley, 2019;Da Paz et al., 2018;Prata et al., 2019). A sobrecarga vivenciada pelas mães em função das exigências, cuidados e tarefas peculiares que precisam exercer na atenção ao filho com TEA pode favorecer um maior risco de desenvolver estresse crônico, depressão e ansiedade (Barroso et al., 2018). ...
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O Transtorno do Espectro Autista (TEA) exige cuidados relacionados ao transtorno que podem gerar uma sobrecarga, ocasionando o estresse materno. O objetivo foi investigar as evidências apresentadas pela literatura sobre como os traços de personalidade influenciam no estresse e no coping de mães de indivíduos com TEA. O método utilizado foi a revisão sistemática da literatura. A busca foi realizada nas bases de dados: Portal BVS-Psi, Scielo, PubMed e Medline, entre 2009-2019. As principais evidencias apontam que alto nível de estresse é presente em mães com filhos com autismo, em 90% dos estudos. A avaliação dos traços de personalidade foi pouco expressiva, com 15% das pesquisas, demonstrando que o estresse materno tem relação com traços da personalidade, com atenção ao neuroticismo e extroversão. Os resultados encontrados enfatizam a presença do estresse em mães de crianças com TEA, sendo a personalidade um recurso pessoal que pode minimizar o estresse.
... Another reason may be the uncontrollable circumstances that limit the effectiveness of parent support programs. For instance, the protracted and difficult diagnostic procedure; socioeconomic status; the expense of finding, obtaining, and maintaining suitable support services; professional and social assistance; fear about the future; and social stigma (Agarwall et al., 2022;Bones et al., 2019;Prata et al., 2019). The number of sessions was seen as a significant moderator for psychological symptoms. ...
Recent research shows that group-based psychoeducation programs designed for parents of children with ASD have grown in popularity over time. The international evidence for the effectiveness of psychoeducation programs designed for parents of children with ASD in developed societies emphasizes the importance of providing a synthesis of the effectiveness of programs in developing societies. This study's primary aim is to assess the efficacy of group-based psychoeducation programs in Turkey for parents of children with ASD. The second aim is to investigate how the programs are influenced by the potential moderators (type of involvement, research design, number of sessions, duration of sessions, and number of participants). For these purposes, a database search was conducted that included group-based psychoeducation programs for parents of children with ASD implemented in Turkey. Twelve group-based psychoeducation programs that met the inclusion criteria were included in the study. The results showed that group-based psychoeducation programs for parents of children with ASD had "medium" effects on psychological symptoms [ES(SE) = 0.65 (.08), 95%CI (0.48-0.81)], "low" effects on social skills [ES(SE) = 0.32 (.16), 95%CI (0.02-0.62)], and "high" effects on well-being [ES(SE) = 1.05 (.19), 95%CI (0.66-1.43)]. According to moderator analyses, the type of involvement and the number of sessions were statistically significant moderators of psychological symptoms, but not the research design, duration of sessions, or number of participants.
... Due to their difficulties of social interaction and communication and repetitive behaviour, children with ASD rely on constant care, placing more stress on their parents (DiRenzo et al., 2022). The greater stress experienced by parents of children with ASD may be due to several factors, such as stigma (Liao et al., 2019), emotional impacts (Rabba et al., 2019), and the child's characteristics (Prata et al., 2019). These stresses related to child rearing influence parents' ability to adapt, which is significantly associated with their children's adaptation and development. ...
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Purpose Providing effective support to parents of children with autism spectrum disorder (ASD) is an important part of clinical work. This study used outsider witnesses in group counselling for parents of children with ASD and explored the mechanism through which the therapeutic effects occurred. Method Parents of children diagnosed with ASD participated in an eight-session group activity. Two outsider witnesses were introduced into some of the sessions. The participants were interviewed to collect their experiences of and reflections on the outsider-witness practice. Texts were analysed using the categorical content approach. Results The intervention was effective because the participants shifted their subjective experiences to an objective position, leading them to reflect on their previous limited perspectives, thus resulting in self-redefinition. These therapeutic effects may arise due to physical displacement, experience resonance, and externalization of subjective experiences. The results of this study have important implications for parents and practitioners.
... This is consistent with the opinion of (Kamaruddin et al., 2015). Stress is caused by the fact that caring for children with special needs is more expensive than caring for typically developing children (Prata et al., 2019). Having a child with special needs is a challenge and adds to the pressure, disrupting the well-being of the family (Ilias et al., 2018) in a family dealing with financial constraints, especially those in the B40 category. ...
... Additionally, ASD is a chronic disorder, its enduring nature with no cure and attributed massive variation of symptoms among the affected population ascribed to lack of communication, social tremendous burden physically and psychologically and economically on the parents/ primary caregivers, and families 9 marked by troubles and unusual interest in responding to various environmental stimuli such as changes in the physical environment, person, and place 10,11 . Due to these potential challenges and looming child behavior restricting the social activities of parents and primary caregivers, high dependency in performing their routine tasks, subsequent intensifying primary caregiver's mental exhaustion, psychological burnout, stress, and depression 4,12 . ...
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Aim: To assess the prevalence of stress and depression among primary caregivers and determine its association with the behavior severity of children with Autism. Study design: Cross-sectional, analytical study using non-probability purposive sampling Place & duration: The study was conducted at the department of Developmental & Behavioral Pediatrics of Children Hospital, WAPDA teaching hospital complex, and Global Institute for Autism and Special Needs, Lahore 1st March to 1st Oct 2020. Methodology: Primary caregivers include the mother, father, and grandparents/siblings (n=96) of children confirmed diagnosed with Diagnostic and Statistical Manual-TR (DSM-IV),who were attending to behavior, sensory and speech therapies of their autistic children. To assess stress and depression; self-administered, structured questionnaires Parenting Stress Scale (PSS) and Beck Depression Inventory (BDI-0) were used respectively. Results: The current study highlighted that, overall, mean stress score was 52.3±7.3,rangingfrom 36.0 to 70.0, and the depression score was 62.5%, where 25% mildly, 11.5%borderline/clinical,16.7% moderately and 9.4% were severely depressed. Likewise, mothers 76(79.2%) are more embedded in caregiving responsibilities of their child with autism and reported more pronounced level of stress as compared to fathers (p=0.003). Conclusion: The prevalence of depression was foundhigher than stressamongprimary caregivers. These studyfindings are crucial for Sustainable Development Goals by the United Nations (SDG-3); to ensure healthy lives and to promote the well-being of all, all ages. Keywords: Stress, Depression, Parents, Autism Spectrum Disorder, Developmental Disability
... These interventions can therefore strain caregivers and families financially, emotionally, and mentally due to their demanding nature. The outcome of the stress is evident as research (Prata et al., 2019) has highlighted that parents of ASD children exhibit worse parenting effectiveness, more significant parenting stress (Jindal-Snape et al., 2006), and mental and physical health problems than Neuro typicals (NT). ...
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Background A severe shortage of skilled clinicians and infrastructure limits the delivery of early intervention programmes for autism spectrum disorder (ASD) children that are labour and duration intensive and most advantageous in the first 3 years. Aim Assess the role of robot mediated intervention (RMI) role in the rehabilitation of ASD individuals by responding to five research questions in the area of (1) Technology maturity; (2) Skill improvement areas; (3) Research design including participant's demographics, datasets, intervention details, and evaluation tools; (4) Data gathering, analysis, and technology contribution, and (5) Role of Robots in intervention and its effectiveness. Methods Scoping review included RMI studies for ASD individuals published in PUBMED, SCOPUS, and IEEE‐Xplore databases between January 1, 2011, and December 31, 2020. The publications were evaluated utilizing the PRISMA scoping review criteria (PRISMA‐ScR) checklist and the Critical Appraisal Skills Program (CASP). Results The 59 selected publications demonstrated that RMI improved skills for ASD individuals in 12 areas. During RMI, extensive joint attention stimuli were given to ASD individuals, and the therapy promoted ASD children's eye contact, imitation, socio‐communication, and academic skills. However, various ethical, privacy, and safety concerns were reported in the review. Conclusion RMI can improve access, quality, and affordability in ASD intervention. The acceptance and use of technology can be fast‐tracked by (1) incorporating statistically valid study designs; (2) carrying out field trials including diverse participant groups; (3) standardizing datasets with quality parameters; (4) recruiting statistically appropriate participant groups from ASD, Neuro Typical (NT) and diverse developmental disorder population; and (5) and addressing ethical, privacy, safety, trust, and other stakeholder concerns.
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Latar Belakang: Orang tua yang memiliki anak disabilitas akan membuat orang tua berpikir apa yang terjadi pada anaknya menimbulkan perasaan stres. Maka dari itu perlu adanya dukungan sosial yang berasal dari keluarga, teman bahkan masyarakat. Dukungan sosial yang baik akan mempengaruhi tingkat stress. Tujuan: Tujuan penelitian ini untuk mengetahui hubungan dukungan sosial dengan tingkat stress orang tua yang memiliki anak penyandang disabilitas di Klinik Pelangi Center Development Neurorehabilitation Ponorogo. Metode: Desain penelitian ini menggunakan cross sectional. Populasi dalam penelitian ini adalah orang tua yang memiliki anak disabilitas sebanyak 100 responden. Sampel dalam penelitian ini sebanyak 100 responden. Pengumpulan data menggunakan kuesioner dengan uji analisa Chi-Square. Hasil: Hasil penelitian ini menunjukkan bahwa dari 100 responden, dengan menggunakan teknik Total Sampling. Didapatkan dukungan sosial baik sebanyak 57 responden (57,0%), dan yang mendapatkan dukungan sosial buruk sebanyak 43 responden (43%). Tingkat stress pada orang tua di Klinik Pelangi Center Development Neurorehabilitation Ponorogo dikatakan 53 responden (53%) dengan tingkat stress sedang, 28 responden (28%) dengan ringkat stress ringan dan 19 responden (19%) dengan tingkat stress berat. Hasil uji statisctic Chi-Square didapatkan nilai p value = 0,000 < a (0,05) sehingga H0 ditolak berarti ada hubungan dukungan sosial dengan tingkat stress orang tua yang memiliki anak penyandang disabilitas di Klinik Pelangi Center Development Neurorehabilitation Ponorogo. Kesimpulan: Dukungan sosial yang berasal dari teman, keluarga bahkan masyarakat sangat mempengaruhi tingkat stess orangtua anak disabilitas. Dukungan informasi, dukungan instrumental, dukungan emosional, dukungan penghargaan sangatlah diperlukan orangtua untuk mengurangi resiko terjadinya stress.
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The experience of family members of children with autism spectrum disorder (ASD) is not uniform. This study focused on mothers of a child with ASD (Study 1) and typically developing siblings (TDSs) during their emerging adulthood (Study 2). Similarities and differences were explored regarding a proposed model examining the paths of perceived social support (PSS) and normalization (a coping strategy) with subjective well-being: satisfaction with life (SWL) and positive affect (PA). Similarities were found in the paths between PSS, normalization, and SWL, in mothers and TDSs, but differences emerged regarding PA. These findings highlight the importance of PSS as a resource that contributes to normalization and SWL. Professional awareness of family members’ PSS and their engagement in normalization is needed.
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The present study contrasted the widely cited “buffer” model of social support with an alternative mediator model. Distinctions were drawn between the functions of social support under chronic vs. acute stress conditions, and between situation-specific stressors and major life events. Ongoing parenting stress was assessed in 96 mothers of deaf children and 118 matched controls. Tests of the competing models showed no moderating effects for social support. However, path analyses suggested that social support mediated the relationship between stressors and outcomes. Chronic parenting stress was associated with lowered perceptions of emotional support, and greater symptoms of depression and anxiety. Furthermore, parenting stress accounted for a substantial proportion of the variance in psychological distress scores in contrast to life event stress, which was only weakly related to psychological outcomes. The implications of mediational models for understanding adaptation to chronic stress are discussed.
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Caregivers of a child with autism spectrum disorder (ASD) often experience elevated distress. The current study examined potential protective factors against caregiver distress when child externalizing and internalizing behaviors are present: family resources, perceived social support, parenting efficacy, knowledge of ASD, and the agreement between actual and perceived knowledge of ASD. Caregivers of a child with ASD completed an online questionnaire. Results demonstrated main effects for externalizing behavior, family resources, and perceived social support. Significant interactions were found among parenting efficacy and internalizing behavior, and the agreement between actual and perceived knowledge with both externalizing and internalizing behaviors. Results indicate important factors that should be emphasized when working with families of a child with ASD.
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Understanding why parents choose some interventions but not others for their child with autism is important for a number of reasons. Estimating the proportion of evidence-based interventions engaged, identifying the agencies influencing parental decisions, and elucidating the barriers or reasons leading to intervention rejection or discontinuation can result in better service provision. New Zealand parents (n = 570) of a child with autism reported what interventions were being engaged, and why some interventions were engaged but not others. Funding was a major determinant of intervention engagement, while medical professionals exerted the most influence. Sources of support were not related to intervention engagement, but parental perceptions of their child’s symptom severity were. Finally, non-engagement does not necessarily reflect parental opposition to an intervention, but rather the existence of barriers.
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We examined predictors of mental health difficulties and wellbeing in caregivers of children with autism in the Pre-school Autism Communication Trial cohort in middle childhood (N = 104). Child’s intellectual disability, daily living skills impairment, elevated emotional and behavioural difficulties, high educational level of caregiver and household income below the median significantly predicted caregivers’ mental health difficulties, but autism severity, child communication skills and family circumstances did not. Lower caregiver mental wellbeing was predicted by elevated child emotional and behavioural difficulties. The need to support the mental health and wellbeing of caregivers of children with autism is discussed in light of the results.
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We report on parent outcomes from a randomized clinical trial of parent training (PT) versus psychoeducation (PEP) in 180 children with autism spectrum disorder (ASD) and disruptive behavior. We compare the impact of PT and PEP on parent outcomes: Parenting Stress Index (PSI), Parent Sense of Competence (PSOC), and Caregiver Strain Questionnaire (CGSQ). Mixed-effects linear models evaluated differences at weeks 12 and 24, controlling for baseline scores. Parents in PT reported greater improvement than PEP on the PSOC (ES = 0.34), CGSQ (ES = 0.50), and difficult child subdomain of the PSI (ES = 0.44). This is the largest trial assessing PT in ASD on parent outcomes. PT reduces disruptive behavior in children, and improves parental competence while reducing parental stress and parental strain.
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There has been limited study of the relationship between child attachment and caregiver wellbeing amongst children with autism spectrum disorder (ASD). This study examined self-reported child attachment quality alongside caregivers’ report of their own psychological distress, parenting stress and attachment style, amongst 24 children with high-functioning autism or Asperger’s disorder (ASD; aged 7–14 years) and 24 typically developing children (aged 7–12 years), and their primary caregiver. Children with ASD were no less secure, but their caregivers were more stressed and reported more attachment-related anxiety, compared to typically developing dyads. Child attachment security was related to caregiver psychological distress and attachment style, but only amongst typically developing children. Impacts of emotion processing impairments on caregiver-child relationships in ASD are discussed.
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Problem/condition: Autism spectrum disorder (ASD). Period covered: 2012. Description of system: The Autism and Developmental Disabilities Monitoring (ADDM) Network is an active surveillance system that provides estimates of the prevalence and characteristics of ASD among children aged 8 years whose parents or guardians reside in 11 ADDM Network sites in the United States (Arkansas, Arizona, Colorado, Georgia, Maryland, Missouri, New Jersey, North Carolina, South Carolina, Utah, and Wisconsin). Surveillance to determine ASD case status is conducted in two phases. The first phase consists of screening and abstracting comprehensive evaluations performed by professional service providers in the community. Data sources identified for record review are categorized as either 1) education source type, including developmental evaluations to determine eligibility for special education services or 2) health care source type, including diagnostic and developmental evaluations. The second phase involves the review of all abstracted evaluations by trained clinicians to determine ASD surveillance case status. A child meets the surveillance case definition for ASD if one or more comprehensive evaluations of that child completed by a qualified professional describes behaviors that are consistent with the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision diagnostic criteria for any of the following conditions: autistic disorder, pervasive developmental disorder-not otherwise specified (including atypical autism), or Asperger disorder. This report provides ASD prevalence estimates for children aged 8 years living in catchment areas of the ADDM Network sites in 2012, overall and stratified by sex, race/ethnicity, and the type of source records (education and health records versus health records only). In addition, this report describes the proportion of children with ASD with a score consistent with intellectual disability on a standardized intellectual ability test, the age at which the earliest known comprehensive evaluation was performed, the proportion of children with a previous ASD diagnosis, the specific type of ASD diagnosis, and any special education eligibility classification. Results: For 2012, the combined estimated prevalence of ASD among the 11 ADDM Network sites was 14.6 per 1,000 (one in 68) children aged 8 years. Estimated prevalence was significantly higher among boys aged 8 years (23.6 per 1,000) than among girls aged 8 years (5.3 per 1,000). Estimated ASD prevalence was significantly higher among non-Hispanic white children aged 8 years (15.5 per 1,000) compared with non-Hispanic black children (13.2 per 1,000), and Hispanic (10.1 per 1,000) children aged 8 years. Estimated prevalence varied widely among the 11 ADDM Network sites, ranging from 8.2 per 1,000 children aged 8 years (in the area of the Maryland site where only health care records were reviewed) to 24.6 per 1,000 children aged 8 years (in New Jersey, where both education and health care records were reviewed). Estimated prevalence was higher in surveillance sites where education records and health records were reviewed compared with sites where health records only were reviewed (17.1 per 1,000 and 10.7 per 1,000 children aged 8 years, respectively; p<0.05). Among children identified with ASD by the ADDM Network, 82% had a previous ASD diagnosis or educational classification; this did not vary by sex or between non-Hispanic white and non-Hispanic black children. A lower percentage of Hispanic children (78%) had a previous ASD diagnosis or classification compared with non-Hispanic white children (82%) and with non-Hispanic black children (84%). The median age at earliest known comprehensive evaluation was 40 months, and 43% of children had received an earliest known comprehensive evaluation by age 36 months. The percentage of children with an earliest known comprehensive evaluation by age 36 months was similar for boys and girls, but was higher for non-Hispanic white children (45%) compared with non-Hispanic black children (40%) and Hispanic children (39%). Interpretation: Overall estimated ASD prevalence was 14.6 per 1,000 children aged 8 years in the ADDM Network sites in 2012. The higher estimated prevalence among sites that reviewed both education and health records suggests the role of special education systems in providing comprehensive evaluations and services to children with developmental disabilities. Disparities by race/ethnicity in estimated ASD prevalence, particularly for Hispanic children, as well as disparities in the age of earliest comprehensive evaluation and presence of a previous ASD diagnosis or classification, suggest that access to treatment and services might be lacking or delayed for some children. Public health action: The ADDM Network will continue to monitor the prevalence and characteristics of ASD among children aged 8 years living in selected sites across the United States. Recommendations from the ADDM Network include enhancing strategies to 1) lower the age of first evaluation of ASD by community providers in accordance with the Healthy People 2020 goal that children with ASD are evaluated by age 36 months and begin receiving community-based support and services by age 48 months; 2) reduce disparities by race/ethnicity in identified ASD prevalence, the age of first comprehensive evaluation, and presence of a previous ASD diagnosis or classification; and 3) assess the effect on ASD prevalence of the revised ASD diagnostic criteria published in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition.
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Parents of children with autistic spectrum disorders (ASDs) are more likely to experience serious psychological distress than parents of children with other developmental disabilities. To examine the impact of a range of factors on psychological wellbeing, interviews were undertaken with 68 mothers of children with ASDs to explore aspects of social support, mental health status and satisfaction with services. Findings indicated that over half of mothers screened positive for significant psychological distress and that this was associated with low levels of family support and with bringing up a child with higher levels of challenging behaviour. Mothers were more likely to report lower levels of support if they were a lone parent, were living in poor housing, or were the mother of a boy with ASD. The study also investigated areas of useful support and areas of unmet need, the latter including care breaks and advice needs.
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Autism spectrum disorder (ASD) is a complex neurodevelopmental disorder that is characterized by a wide range of cognitive and behavioral abnormalities. Genetic research has identified large numbers of genes that contribute to ASD phenotypes. There is compelling evidence that environmental factors contribute to ASD through influences that differentially impact the brain through epigenetic mechanisms. Both genetic mutations and epigenetic influences alter gene expression in different cell types of the brain. Mutations impact the expression of large numbers of genes and also have downstream consequences depending on specific pathways associated with the mutation. Environmental factors impact the expression of sets of genes by altering methylation/hydroxymethylation patterns, local histone modification patterns and chromatin remodeling. Herein, we discuss recent developments in the research of ASD with a focus on epigenetic pathways as a complement to current genetic screening.
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This project describes health-related quality of life (HRQoL) of parents of children with autism spectrum disorders (ASDs) using mixed methods. Parents of children with ASDs (N = 224) reported on their HRQoL, depression, and caregiving burden using quantitative tools. HRQoL scores were slightly worse than from those in normative populations especially related to stress and mental health. For example, parents reported average HRQoL scores from SF-6D of 0.74, which was clinically significant lower than an average normative U.S. population. 40% of parents reported having clinical depression symptoms. Married parents reported lower depression symptoms than parents who were not. In addition, families with three or more children with special health care needs (CSHCN) reported lower HRQL and higher caregiving burden than families with less CSHCN. In the qualitative study, we conducted five focus groups to gain insight as to the reasons a child's ASD might influence a parent's HRQoL. Qualitative data further supports the notion that parental HRQoL was negatively influenced by their child's ASDs. Studies that seek to quantify the influence of ASDs and to assess the effect of interventions for children with ASDs may consider measuring the effects on family members as well.