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Mental Health of Families with ASD

Mental Health of Families with Autism Spectrum Disorder:

A Systematic Review

Ray M. Merrill, Addison Smith, Charisse C. Schenk,

Department of Public Health, Brigham Young University, College of Life Sciences, Provo, Utah

Direct correspondence to:

Ray M. Merrill
Professor
Department of Life Science
Brigham Young University
Provo, UT 84602
801-422-9788
[email protected]
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Mental Health of Families with ASD

Abstract

Introduction: This study explores parental and sibling mental health challenges associated with

a child having autism spectrum disorder (ASD). Potential moderator and mediator effects of the

association between ASD and family mental health are also considered, along with interventions

and potential positive effects associated with ASD children.

Methods: A systematic review was conducted of peer-reviewed manuscripts involving mental

health effects on mothers, fathers, and siblings of children with ASD. The accessed literature

came from an electronic search conducted through October 2021. Well-known databases were

used to access literature.

Findings: Because of behavioral problems of children with ASD, as well as additional

emotional, communication, sleep, and delayed social problems, parents of children with ASD

experience greater familial stress. Mothers tend to experience more stress, anxiety, and

depression than fathers do. Fathers tend to experience stress due to the mother’s mental health

challenges as well as a lack of confidence in raising a child with ASD. Added stress for both

parties comes from strained marital relationships and other factors. Studies of siblings of children

with ASD have shown positive effects in terms of self-concept and social competence, whereas

other studies have shown negative effects like low levels of prosocial behaviors, feelings of

loneliness, and delays in developing social skills. Older male siblings have greater risk for

behavioral and emotional difficulties and siblings later in the birth order have greater risk of

feeling lonely and socially dissatisfied.

Discussion: Mothers gain greater positive outcomes by receiving assistance from family, friends,

and professionals. Fathers feel empowered when involved in educational interventions that
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Mental Health of Families with ASD

demonstrate how to care for their child with ASD. Constructive outcomes are achieved for

parents of children with ASD through interventions.

Keywords

Anxiety, Caregiver, Depression, Intervention, Mental Health, Parents, Siblings, Stress

Introduction

Autism derives from the word autos, signifying a person who keeps to him/herself, isolated from

surrounding interactions [1]. The term “autism” was first used in 1908 to describe a group of

schizophrenic patients who were unaware of the world around them. In the 1940s, Leo Kanner

observed 11 different cases of impaired development in language and social interactions in

children. This was the primary observational insight in acknowledging autism as a definite

syndrome [2]. Now, more than 80 years later, a stronger definition and understanding of autism

has been established. Autism is a neurodevelopmental disorder characterized by continual

deficits in social communication and social interactions across different contexts, restricted and

repetitive patterns of behavior, and unusual responses to sensory stimuli [3]. Social challenges

include avoiding personal interactions and having difficulty expressing emotion [4].

Communication challenges consist of delayed or absent speech [5]. Behavioral challenges may

range from repetitive patterns to aggressive or disruptive behavior [6-8].

In the United States, approximately 1 in 54 children are diagnosed with autism according to a

Centers for Disease Control and Prevention (CDC) report based on data in 2016 [3]. Autism is

more common in whites and males [3]. It is classified as a developmental disorder because of its

manifestations in the initial years of life, most commonly at 20-30 months, but can be detected as
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Mental Health of Families with ASD

early as 18 months [5]. From ages 0-3, children typically hit certain milestones (e.g, walking,

talking, sharing, and expressing emotions) [9]. Delays in these milestones indicates the

possibility of autism [9]. Children with autism spectrum disorder (ASD) face unique encounters

throughout the school years, such as a change of routine and familiarity due to change in

classmates, teachers, or subjects, which may cause disruption and discouragement for children

with ASD [9]. Improved education and increased awareness of the special challenges faced by

autistic children enhances an educational system’s knowledge and effectiveness of working

alongside families who have children with special needs [10].

There is no known cure for ASD, but some of the symptoms may be effectively regulated.

Therapies and testing are underway to govern the core deficits of ASD [11]. Some therapies

include neuro-feedback training and speech therapy to enhance cognitive skills, virtual

assessment tools (entertainment technology) to develop speech communication, interactive skills,

psycho-education therapy to increase learning rate and attention control, and assistive tools to

develop reading and comprehending skills [1]. Treatments and studies regarding the subject are

well documented and advancing rapidly [1]. Treatment outcomes demonstrate various effects on

children with ASD, but often overlook how the impact of the outcomes may differ if caregiver

involvement is integrated [12].

Researchers have found that parents of children with ASD are at greater risk of stress

proliferation (i.e., a tendency of stressors to cause more stressors in other domains of life)

[13]. It has long been recognized that autism is associated with several family stressors such as

communication problems, marital conflict, lack of bonding, erratic sleep patterns, problems with

changes in routine, splinter effects, reduced ability to socialize, need for respite, future related

worry, and unique financial matters [14]. The arrival of a child with a disability has the potential
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Mental Health of Families with ASD

to either weaken family relationships or be a source of unity in the family [15]. Responses may

differ between mothers, fathers, and siblings as they work to understand, teach, and care for a

child with ASD. Identifying differences in responses among the mother, father, and siblings may

allow for further emphasis to be placed on positive interventions that can improve possible

mental health challenges [14]. Families are encouraged to participate as a group in making

program decisions for the affected child and to receive coping and training skills through

counseling services [14].

With mental pressures associated with raising a child with ASD, studies have predominantly

been focused on mothers of children with ASD [16-18], which is consistent with women most

often being the primary care provider. One study found that caregivers of children with ASD are

mostly the biological parents (95%), and predominately the mother (89%) [19]. However, the

father is sometimes the primary care provider and, likewise, plays an equally important role in

raising a child with ASD [20]. In addition to parents, it is important to consider how siblings of

those with ASD are affected and ways in which they cope [21]. The ASD child’s age, gender,

family circumstances, life-course perspectives, marital satisfaction, social support, cultural

issues, and more may influence the families overall mental health outcomes [21-28].

The primary purpose of the current study was to identify parental and sibling mental health

outcomes associated with ASD children; identify moderator (e.g., age and gender of the child)

and mediator (e.g., parenting stress, marital conflict, family and economic pressure, future-

related worry) effects of the association between ASD and family mental health; and review

interventions and positive effects associated with ASD children.

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Mental Health of Families with ASD

Methods

English-language peer-reviewed literature on mental health effects on mothers, fathers, and

siblings of children with ASD were reviewed. The accessed literature was found through an

electronic search that was conducted through 2021. Literature was accessed using four well-

known databases (i.e., Medline, Embase, Cochrane, and Scopus). Search terms included

depression in parents OR anxiety in parents OR depression in mothers OR depression in fathers

OR anxiety in mothers OR anxiety in fathers OR mental health effects of parents OR siblings OR

stress in siblings OR parental stress OR AND children with autism spectrum disorder OR

children with ASD. The authors independently reviewed the titles and abstracts of articles to

identify relevant studies for full-text review. Additionally, the authors sought to distinguish

certain characteristics of the mothers, fathers, and siblings of children with ASD (e.g, mental

health, age and gender of the ASD child, and the parental gender of focus) and the behavioral

characteristics of children with ASD.

A total of 84 studies published in the scientific literature during the period 2000 to 2021 were

included in the current study (Table 1).

Results

Study designs identified in this paper were primarily cross-sectional surveys (n = 67), followed

by literature reviews (n = 5), longitudinal studies (n = 4), meta-analyses (n = 5), diary studies (n

= 2), and a case-control study (n = 1). The surveys incorporated several validated instruments for

measuring autism; behavioral problems; parental stress, anxiety, and depression; adaptability;

resilience; coping; and more. The literature reviews identified an increased risk of family mental
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Mental Health of Families with ASD

health problems in homes with ASD children, that stigma negatively influenced parental mental

health, and that ASD children have an increased risk of sleep disorders [23, 29-32]. The

longitudinal studies identified higher mental health problems in parents of ASD children and

found that home training, interventions, and coping strategies can lower parental stress and other

mental health problems [33-36]. The meta-analyses focused on interventions that do not require a

specialist in treating individuals with ASD [37]; identified higher risk of depression and

psychiatric difficulties in parents of children with ASD [38, 39]; correlated short- and long-term

sleep duration with depression [40]; showed that parental stress can be significantly reduced

through mindfulness or relaxation training; and that parent style and satisfaction can be improved

through parental education [41]. The two diary studies covered different topics. The first

identified poorer partner relationships in parents of ASD children [42], and the second found that

mothers of ASD children had higher rates of mental health problems, in part because of greater

time pressure, but social support was an effective means for lowering maternal mental health

problems [43]. The case-control study identified factors associated with stress in mothers of

children with autism [44]. Parental mental health is directly related to ASD.

Among the 84 studies, 21 focused on comparing mental health outcomes of mothers and fathers

of children with ASD; 33 assessed the direct relationship between parental mental health and

ASD; 33 assessed indirect relationships between parental mental health and ASD; 8 considered

sibling mental health; 23 presented ways to reduce mental health problems; and 5 explored

positive outcomes linked to being in a family with an ASD child.

The primary outcome variables considered in the studies were stress (n = 42), anxiety (n = 16),

depression (n = 28), and other (e.g., family unity, happiness and fulfillment, personal strength,

personal maturity and growth, greater social network, physical health) (n = 53). Research
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Mental Health of Families with ASD

indicates that stress mediates the association between having a child with ASD and anxiety or

depression [45-47]. In the current study, several papers found an increased risk of both stress and

anxiety [45, 47-49, 52, 54, 55] and stress and depression [30, 45, 47, 49-57] among mothers

and/or fathers of children with ASD.

One study involving female caregivers found that stress was associated with avoidance strategies

(self-blame, denial, emotional venting, and disengagement) [57]. One study involving male

caregivers found that stress was associated with nervousness, hopelessness, and worthlessness

[58]. Increased physical health problems associated with having an ASD child may further

contribute to parental stress [19, 28, 58]. Several studies found that parental stress was positively

associated with the severity of their child’s ASD [59 60 61]. Other factors contributing to

parental stress include behavioral problems [24, 55, 58, 62-66]; social disability [50, 61, 66, 67];

spousal relationship problems and partner depression [51, 68]; being a sole parent or caregiver

[60]; economic burden [29]; eating, sleeping, and emotional problems [24, 69]; cooccurring

ADHD and OCD [70]; and concern for the child’s future, poor health, and permanency of the

condition [29, 65]. Parental stress may also be associated with the ASD child’s age and sex. One

study found that stress was greater if the child was less than age 12 because younger age are

more likely associated with the initial diagnosis and treatment [69]. Another study focusing on

preschool aged children with ASD found that fathers had greater stress if their child was female

[25]. This study of preschoolers also found that age 5 was associated with greater parental stress.

More severe depression and lower health-related quality of life was associated with an older

child with ASD and diagnosis at an earlier age [26].

Of the studies identified in this paper, 19 involved mothers only, 3 involved fathers only, 53

involved both mothers and fathers, and 9 involved other factors.

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Mental Health of Families with ASD

Mothers

Mothers are often the focus in studies of children with ASD, as they tend to spend a higher

proportion of time with their child. The accumulation of research indicates that mothers

experience stress at levels that make them more susceptible to anxiety, depression, and cellular

aging beyond their years [54, 71]. This section highlights selected outcomes, causes of mental

health problems, positive outcomes, and interventions and self-redirection for women of children

with ASD.

Mental Health Problems

Studies have consistently shown that mothers of children with ASD experience higher stress

compared with mothers of normally developing children [44, 53-56, 63]. In one study, 42% of

mothers hit a clinical level of stress and an additional 28% had moderately elevated stress [34].

In many cases, stress can be severe enough to result in insomnia [72], withdrawal [44], anxiety

[27, 46, 49], and depression [49, 51]. However, not all studies found stress to be a precursor of

depression in mothers of children with ASD [47].

Causes of Mental Health Problems

Behavioral problems (e.g, hurting others, damaging property, and self-injury) in ASD children

have been associated with maternal stress [52, 62], anxiety [66], depression [34, 66], and lower

life satisfaction [73]. Behavioral problems in ASD children have been identified as the strongest

predictor of maternal psychological distress [55, 59]. Research has shown that child behavior

difficulties mediate the association between ASD symptoms and maternal stress [63, 74]. Higher

severity of challenging behaviors in children with ASD positively correlate with higher levels of

parental stress [66].

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Mental Health of Families with ASD

In a study linking maternal depression with child behavioral problems, maternal depression was

also associated with maternal anxiety symptoms and poor mood, low parenting efficacy and

social support, and poor coping styles [34]. When a child’s disruptive behavior extends into

public settings, levels of maternal stress, anxiety or depression significantly increase [66].

Increased stress may be particularly present when the mother of an ASD child is not able to

manage their child’s behavior in public places [56].

Studies demonstrate that women find refuge in social interactions, whether it is with

organizations or with close friends or family [43, 75, 76]. Research has also shown that for

women of children with ASD, social support correlates with greater optimism, which, in turn,

leads to lower levels of stress and depression [43, 50]. In a study assessing the association

between behavior and emotional problems and maternal life satisfaction, the negative effect of

these problems on life satisfaction occurred when there was little or no perceived social support

[75]. Having no childcare support, low satisfaction with their healthcare provider, and needing to

work outside the home have further been associated with depression in mothers of children with

ASD [76].

Positive Outcomes

Although it has been shown that mothers are more inclined than fathers to develop stress,

anxiety, and depression while raising a child with ASD [36, 47, 49, 52, 55, 69, 77], it has also

been shown that mothers tend to experience more positive outcomes than fathers [48,, 51 55, 78,

79]. Families of children with ASD often experience resilience by making positive meaning of

disability, mobilization of resources, becoming a closer and more united family, developing a

greater appreciation for life and in others, and gaining spiritual strength [80]. One study found

that mother’s perception of positive contributions of having an ASD child, such as learning by
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Mental Health of Families with ASD

experience, happiness and fulfillment, personal strength and family closeness, understanding the

purpose of life, personal maturity and growth, awareness of future issues, greater social network,

career and job growth, and pride and correction, are higher than father’s perceptions [48].

In a study assessing mental health in mothers with a disabled child, their mental health was

positively associated with participation in healthy activity, feelings of empowerment, and the

child’s psychosocial health [71]. A sense of competence, taking things a day at a time, and

emotional support from a spouse can effectively promote maternal well-being when raising a

child with ASD [81].

Interventions and Self -Redirection

It has been shown that maternal anxiety and depression can decrease by using interventions to

monitor and lower core symptoms of children with ASD [82]. Interventions may include

promoting healthy activities and empowerment among mothers of ASD children, as well as

addressing the psychological needs of the child [71]. They may also focus on regulating severe

behavior problems of children with ASD. Researchers say that this requires dedication to a

dependable routine of the child’s schedule and guidance on proper behavior in order to decrease

maternal stress [59]. Interventions aimed to lower maternal stress among mothers of ASD

children may consider the child’s needs and behaviors; the mother’s personal needs and ability to

organize; familial and spousal relationships; service availability and adequacy; and the

environment in which the family lives [66, 80, 83]. In addition, positive social exchange with

one’s spouse was shown to be a primary means of lowering depressive symptoms in mothers of

ASD children [75].

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Mental Health of Families with ASD

Mothers of autistic children may redefine what constitutes the fulfillment of various human

needs and/or seek to find alternative ways to fulfill them. In one study, mothers of children

with ASD placed less emphasis on their own careers and focused more on their parental

role; spent more leisure time with extended family members; put less emphasis on what

others thought about their child’s behavior; put more emphasis on spousal support and the

parental role in discussions about marriage; entertained more than one interpretation

about their child’s behavior; and showed a tendency toward a greater overall tolerance of

their child’s actions [84].

Fathers

Fewer studies have assessed mental health and social outcomes of fathers of children with ASD.

This is likely because fathers are generally less involved than mothers in raising children with

ASD [31]. Nevertheless, it has been shown that fathers are fully capable of promoting father-

child social interactions wherein the child responds well to them [85]. This section highlights

selected mental health outcome measures, with more emphasis on differences between fathers

and mothers, and discusses selected interventions and empowerment strategies.

Mental Health Outcomes

Fathers, like mothers of ASD children experience higher stress [25, 33, 51, 87]. In one study,

17% of fathers of ASD children had higher risk for psychological distress; 16% experienced poor

global health; and 16-18% engaged in adverse health behaviors (e.g., alcohol abuse, cigarette

smoking) [58]. In another study, father’s stress was linked more to the child’s externalizing

behaviors and mother’s stress was linked more to the child’s eating, sleeping, and emotional

regulation [69].
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Mental Health of Families with ASD

Research has found that fathers are more likely than mothers of ASD children to ignore their

own mental health issues [87], express less emotion, seek less social support, and have poorer

coping skills [69]. For example, mothers do better than fathers in coping (e.g., by communicating

questions and seeking information), while fathers tend to just avoid the stressful situation (e.g.,

going to work) [69]. Both mothers and fathers of ASD children experience significantly higher

levels of anxiety and depression [36], but fathers appear to have lower levels of anxiety than

mothers [88]. While research has found that fathers also have lower levels of stress than mothers

of children with ASD [36, 47, 49, 52, 55, 69, 77, 89], mothers adapt better to stress and stress is a

stronger precursor of depression for fathers [33, 47, 48, 55].

Negative social exchange with one’s spouse has been shown to have a positive association with

depressive symptoms for both fathers and mothers of children with ASD [74]. An older study

explained that although mothers may be more susceptible to stress, depression, and parental

burnout, if parental roles change (with fathers assuming a greater role in providing direct care)

stress levels may become more equally shared [90]. In the same study, three main outcomes were

related to increase stress in fathers of children with ASD: strained marriage, poor self-

competence, and the challenging behaviors of the ASD child.

One study evaluated parental coping mechanisms such as escape/avoidance, which is a strategy

of trying to nullify or forget the challenge at hand [91]. The escape/avoidance mechanism often

results in social isolation and neglect of the marital relationship. Stress may arise in the marital

relationship when the couple neglects to spend time together [62]. While mothers are often the

primary care provider, it is important for fathers to equally care for children with ASD [91].

Studies have shown that the stress of the family unit (e.g. spousal relationship, sibling
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Mental Health of Families with ASD

relationship, parent-child relationship) could be eased through an increase of direct father-child

nurturing efforts [31].

Intervention

A quasi-experimental research design was used to examine parental stress through the Parenting

Stress Index-Short Form (PSI) before and after testing an intervention [33]. The intervention was

a father-based initiative, where the father was taught four methods: following the child’s lead in

play; imitating and exaggerating the child’s actions, to prevent parent-child reciprocity; effective

communication through clear signals; commenting on child’s actions rather than asking

questions. The father then taught the mother these techniques.

The PSI is a self-report questionnaire that measures stress by assessing the parent’s perceptions

of both self and child. A PSI score of 90 is considered clinical. At pretest, mothers and fathers

reported an average PSI level of 96.4 and 90.5, respectively. After a 12-week training for an

intervention program, the mother’s average PSI level dropped to 89.9 and the father's PSI fell to

83.7. The results were significant for mothers. Although the decrease in the fathers’ mean score

was notable, it was not statistically significant because of the large variability in the scores [33].

In general, interventions that educate fathers on caring for their child with ASD that include

working alongside their spouse in raising their child have shown positive results in stress relief

for both the mother and father [59, 77, 80].

Empowerment

Empowerment (ability to actively satisfy one’s needs, gain control of one’s life, overcome

obstacles) has been studied in both fathers [92] and mothers [71] of children with ASD. Higher

empowerment corresponds with better mental health [71]. Unfortunately, empowerment tends to
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Mental Health of Families with ASD

be lower in fathers of children with ASD than fathers of normal developing children [92]. Social

support was not associated with empowerment in these fathers.

Fathers of children with ASD often lack confidence in feeling capable of raising their child [92].

If fathers gain a better understanding of the disorder and the available services for their child and

family, they may feel more empowered and confident in fulfilling their role in caring for their

child [92]. However, implementing certain coping strategies may help lower paternal stress. For

example, researchers found that fathers demonstrated lower levels of stress due to their ability to

use different strategies of coping in relation to their child with ASD. Because of these different

coping strategies, fathers were able to bear their child’s behaviors in an adaptive manner that

empowered and reduced the resulting impact of stress [85].

Parental Unit

Sometimes studies do not differentiate by “father” or “mother,” but classify parents as a unit. For

example, in a study of high-functioning children with autism, parental stress was evaluated along

with sibling adjustment and family functioning [86]. Parents of children with high-functioning

autism showed greater stress than parents of children with no psychological disorder. The fact

that these children were high functioning did not compensate for the increased stress parents

experienced because of their child’s primary symptoms. In another study, parents of toddlers that

had ASD experienced increased stress compared with parents of toddlers with developmental

delay without ASD and typical development children [93].

One study found that family support had a direct, positive effect on family quality of life and

indirect effect on family quality of life through stress [94]. Another study showed that social

support had a positive effect on family cohesion and adaptability [95]. Specifically, social
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Mental Health of Families with ASD

support in the form of subjective support (an individual’s level of satisfaction of being

supported) and utilization support (degree individuals make use of available social support), but

not objective support (visual or actual social support), were found to increase family cohesion

and adaptability.

In a study assessing the partner relationship in families with ASD children, individual optimism,

benefit finding, coping strategies, and social (instrumental and emotional) support positively

related to relationship satisfaction [96]. Note that instrumental support involves seeking advice

assistance from another. Emotional support involves seeking moral support (sympathy or

understanding).

Though many parents experience hardships from raising a child with ASD, there are some

benefits that warrant consideration. Some positive outcomes described by parents of children

with ASD are personal growth, empowerment to help others, spiritual growth, stronger couple

relationships, a more united family unit, and new career discoveries [78]. Another study found

that the greatest factor contributing to positive outcomes in a mother’s mental health was when

there were informational and emotional social exchanges from both within and outside the

family [75].

Divorce

When comparing couples with and without a child with ASD, a significantly higher rate of

divorce occurred in families with an autistic child [97]. Divorce remained high through the ASD

child’s childhood, adolescence, and early adulthood. Divorce was more likely for younger

maternal age when the ASD child was born and if the child was born later in the birth order [97].
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Mental Health of Families with ASD

Sleep

Children with ASD tend to have higher levels of sleep disorders [32, 98], which contributes to

disrupted sleep and maternal stress [68, 99]. The majority of children with ASD follow a sleep-

wake pattern for sleeping and experience a sleep onset delay [98]. For several reasons, sleep for a

child with ASD is a major concern and challenge for parents. Difficulty to sleep interferes with

brain development, thus creating additional difficult behaviors for parents to monitor [32].

Difficulty to develop a regular sleep schedule for children with ASD disrupts the parent’s sleep

cycle. A meta-analysis of prospective cohort studies, which included 25,271 participants for

short sleep duration and 23,663 participants for long sleep duration, found that adults who

followed short or long sleep duration patterns had a greater risk of depression [40]. The authors

indicated that short duration sleep patterns induced depression from a lack of sleep and long

duration sleep patterns were induced from a lack of physical activity [40].

Siblings

Considering siblings is important because they, like their parents, have various experiences of

coping with parental stress and individual consequences of working with a sibling who has ASD.

Yet the subsystems (mother-father relationship, sibling relationships, and peer relationships)

make the sibling relationship complicated. A review study found mixed results with respect to

outcome and adjustment variables for siblings of individuals with ASD [23]. While some studies

showed positive effects in terms of self-concept and social competence, other studies showed

negative effects like low levels of prosocial behaviors (actions to help other people), increased

internalizing and externalizing problem behavior, feelings of loneliness, and delays in

developing social skills. One study found that siblings of children with ASD without a diagnosed
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Mental Health of Families with ASD

disorder are not at increased risk of psychosocial problems, compared to children in the general

population [100]. In another study, siblings of children with ASD had similar

emotional/behavioral adjustment but less involvement and more avoidance of their sibling as

normally developing children [101]. Older male siblings in this study were at greater risk for

behavioral/emotional difficulties. A study of siblings of children with ASD found that while the

firstborn child does not experience greater likelihood of feeling lonely and socially dissatisfied, a

sibling of an ASD child later in the birth order is more likely to feel lonely and socially

dissatisfied [102].

Both mothers and fathers are more likely to rate siblings of ASD children as having more

emotional problems and lower prosocial behavior when compared with normally developing

children [103, 104]. These studies involving parent’s perceptions may differ from sibling’s

perceptions. For example, one study found that overall, siblings did not feel negative emotions

toward the affected sibling while parents often reported a more negative perception of the impact

the individual with the disability had on the family [105].

In one paper, sibling relationships were studied by using the Family Systems Framework, which

recognizes the interrelatedness and evolving dynamics of the family unit. The authors suggest

that siblings should be considered as intervention agents by understanding the perceptions of

children toward their sibling with ASD [106]. In order to promote positive sibling involvement

and family functioning the authors identified key features that should be addressed such as

developmental level, communication status, and areas of strength, challenge, and interest.
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Mental Health of Families with ASD

Discussion

Children with ASD bring new life changes for mothers, fathers, and siblings. There have been

several studies that have focused on how children with ASD can influence the mental health of

their mothers. The mental health of fathers and siblings of children with ASD have received less

attention. The aim of this review was to present the mental health effects commonly experienced

by parents of children with ASD, identify how ASD affects family mental health, and discuss

some of the interventions and positive effects associated with ASD children.

Severity and behavioral problems like self-injury and disruptive public outbursts in ASD

children are the primary causes of parental psychological stress [24, 55, 58-66]. There is

considerable evidence that a proliferation of stress results for mothers and father of children with

ASD [13, 25, 33, 51, 87]. This proliferation relates negatively to hope, confidence, self-worth,

communication, marriage, bonding, sleep, socialization, finances, and more [14, 24, 29, 50, 57,

58, 61, 65-67, 69, 70]. Stress also increases the risk of anxiety and/or depression [45-47].

Increased sleep disorders in ASD children and resulting sleep disturbances in parents is a

potential mediating cause of parental depression [40]. Research has found that stress-induced

depression is caused by vulnerabilities in personality structure and persistent disturbances in the

5-hydroxytryptamine (serotonin) system and other underlying mechanisms [107, 108].

There is some evidence that social support is a moderator of the association between ASD child

behavior and maternal depression [73]. The association between ASD and parental stress may

also be moderated by the child’s age and sex [25-27]. Behavioral difficulties may mediate the

association between ASD and maternal stress [63, 74]. In turn, stress may mediate the

association between ASD and anxiety and/or depression [36, 46, 48].
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Mental Health of Families with ASD

Differences were observed in the mental health between mothers and fathers of children with

ASD, with mothers more inclined than fathers to experience stress, anxiety, and depression [36,

47, 49, 52, 55, 69, 77, 89]. However, mothers adapt better to stress [33, 47, 48, 55] and

experience more positive outcomes (e.g., learning by experience, happiness and fulfillment,

personal strength and family closeness, understanding the purpose of life, personal maturity and

growth, awareness of future issues, greater social network, higher spiritual strength, career and

job growth, and pride and correction) than fathers [48, 51, 55, 78, 79, 80]. This may be because

fathers are typically less involved than mothers in raising ASD children [31], are more likely to

ignore their own mental health issues [87], express less emotion, seek less social support, have

poorer coping skills, and avoid stressful situations [69].

Fewer studies have considered mental health and social factors of siblings of children with ASD.

Some studies showed siblings of ASD children to have higher self-concept and social

competence, but lower prosocial behaviors, increased behavior problems, feelings of loneliness,

less involved and more avoidant of their siblings, and delays in developing social skills [23,

101]. The risk of negative outcomes may be greater for ASD siblings born later in the birth order

[102] and older males [101]. It may be that siblings of ASD children are more likely to have

mental health and social problems because they are more likely to be on the spectrum [100].

Promoting positive sibling involvement and family functioning should consider the ASD

sibling’s developmental level, communication status, and areas of strength, challenge, and

interest [106].

A common theme among the possible interventions is that fathers who co-care for their child

with ASD are able to increase in direct father-child nurturing [51]. Additionally, fathers who

invest time in being involved in gaining education and a larger understanding of ASD, are then
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Mental Health of Families with ASD

able to implement the learned resources that are available for assisting in the care of their child

with ASD [51]. As a result, fathers will be more empowered, less likely to avoid caring for the

child with ASD, and stronger marriages will ensue, thereby contributing to a unified effort in the

child rearing process [51]. Mothers appear to require more social support from counselors,

organizations, family and friends than fathers [73]. Parent and family focused interventions may

be effective in improving parental well-being and familial quality of life [33, 37, 41, 59, 66, 71,

75, 77, 80, 82, 83, 94].

Notwithstanding the many challenges, studies have also identified positive aspects of raising a

child with ASD. These include stronger family perceived relationships, a sense of

accomplishment by the parents as they see their child progress, a greater sense of personal

growth and empowerment, a closer and more united family, a greater appreciation for life and in

others, spiritual strength, and joy in raising their child with ASD [79, 80]. Mother’s perception of

positive contributions of their ASD children are greater than fathers [48, 51, 55, 78, 79].

Some limitations and recommendations are in order. First, most studies are based on cross-

sectional designs, which may be prone to misrepresentation if low response rates and recall bias

exists. These studies are not effective at identify temporal sequences of events. Second, some

studies reviewed used small sample sizes or convenience samples. Small sample size and lack of

random selection may cause misleading results. Hence, generalization of these studies should be

made with caution. Third, some studies were susceptible to confounding factors, although

several of the studies adjusted their results for potential confounders (e.g. child’s age,

socioeconomic status, employment status, education levels of parents, family systems and

relationships apart from the child with ASD, marital relationship, and definitions of stress levels,

etc.). Despite these limitations, there were several strengths to the reviewed studies. Many of the
 22
Mental Health of Families with ASD

studies were able to test specific interventions to evaluate how they affected the mental health of

mothers, fathers, and siblings. Some of the studies tested for a specific variable (i.e. child’s age,

certain behaviors), which allowed for assessment of potential mediating or moderating effects.

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Table 1 Summary of Autism Spectrum Disorder Studies

Outcome
Source Measurement Study Design Population Child Factors Summary
Variables
Prevalence of depressive
symptoms among caregivers
of children with ASD was
Random sample of
Alshekaili et 71%. The high percent could
Patient Healthcare Cross- 80 parents with Severe
al., 2019 [60] Depression be due to the child having
Questionnaire-9 sectional children with ASD disability
BC severe disability.
(Oman)
Unemployment and being
the sole parent/caregiver
correlated with depression.
Active-avoidance coping
Ages 7-17 was the most common
Diagnostic
years. Most approach for adjusting, and
Statistical Manual
with ASD, this correlated highest with
of Mental
106 mothers and 97 some with greater depression, anxiety
Disorders—Fifth Stress
Ang & Loh, Cross- fathers from Asia. Asperger’s and stress. Mothers
Edition (DSM-5); Anxiety
2019 [47] AE sectional 97% were married disorder, and experienced significantly
depression, anxiety, Depression
(Asia) some with greater stress levels than
stress (self-reported
pervasive fathers. However, while
questionnaires);
developmental stress was a major precursor
COPE
disorder to depression for fathers, but
not for mothers.
Argumedes et Sociodemographic Cross- 42 families; 10 ASD child had Stress High severity of ASD and
al., 2018 [59] questionnaire; sectional father; 27 mothers; to present at challenging behaviors were
BE Childhood rating 5 couples (Canada) least one associated with increased
Scale; Parenting challenging risk of stress. Reductions in
Stress Index-3 ed. behavior (e.g. challenging child behavior
hitting, with family centered support
property correlated with reduced
damage, self- parenting stress.
 2
Mental Health of Families with ASD

injury)
Bayat 2007 Walsh’s resilience Cross- 175 parents and Ages 2-18; Positive Families of children with
[80] F theory. sectional other primary 53% had severe outcomes; ASD often experience
caregivers autism. Family unity resilience by making
(USA) 60% had some positive meaning of
sort of disability, mobilization of
aggressive resources, becoming a closer
behavior. and more united family,
developing a greater
appreciation for life and in
others, and gaining spiritual
strength.

Fathers and mothers were

studied separately and as a
partnership before and after
the 12-week in home
training and intervention.
18 male and 1
Parenting Stress Mothers and fathers reported
female with ASD
Index-Short Form; high stress prior to the
Bendixen et and their parents
The Family intervention. The
al., 2011 [33] Longitudinal recruited from Mean age = 4.5 Stress
Adaptability and intervention lowered the
AE Florida’s Center for
Cohesion stress level, but not
Autism and Related
Evaluation Scales significantly. Mothers were
Disabilities (USA)
more flexible and easy to
adapt to new developmental
stressors. Fathers reported
that they like structure where
they established rules.
Benson, Autism Diagnostic Cross- 72 parents of Ages 3-7 Psychosocial Siblings of children with
Karlof, 2008 Interview-Revised; sectional children with ASD (Mean = 4.7) effects. ASD who do not have a
[100] D Strengths and (USA) diagnosed disorder are not at
Difficulties increased risk of
 3
Mental Health of Families with ASD

Questionnaire
(SDQ); Parenting psychosocial problems,
Stress Index; compared to children in the
Family Climate general population.
Index
Maternal mental health was
negatively associated with
152 mothers (94 their child’s unmet service
with ASD, 29 with needs and challenging
Bourke-Taylor Short Form 36 V.2;
Cross- cerebral palsy, and Mother’s mental behaviors, but positively
et al., 2012 Pediatric Quality of Ages 5-18
sectional 19 with attention health associated with maternal
[71] BC Life Parent Report
deficit hyperactivity participation in healthy
disorder) (Australia) activity, maternal
empowerment, and the
child’s psychosocial health.
The five main categories that
were associated with
maternal mental health were
(1) the child’s needs and
behaviors; (2) the mother’s
personal needs and ability to
Emotional organize; (3) familial and
Bourke-Taylor Purposive sample of
Qualitative Cross- distress (e.g. spousal relationships; (4)
et al., 2010 8 participants
assessment sectional daily challenges service availability and
[83] BC (Australia)
to mental health) adequacy; (5) and the
environment in which the
family lives. The study
aimed to find solutions to
these five issues. A study
limitation was its small
sample size.
Brobst et al., Parental Stress Cross- 25 couples with Mild severity Stress Parents of ASD children
2009 [62] A Index Short Form sectional ASD children; 20 experienced more stress and
 4
Mental Health of Families with ASD

greater challenge with child

(PSI-SF); Eyberg behavior problems, as well
Child Behavior as poorer social support and
Inventory (ECBI); relationship satisfaction than
Relationship parents of normal
couples with
Assessment Scale functioning children.
children who have
(RAS); Social Mothers of children with
no developmental
Support Scale ASD having the most
disorders (USA)
(SSQ6); Respect intense behavior problems
Toward Partner had lower levels of spousal
scale; Commitment support, respect for their
scale spouse, and commitment to
their marriage.
167 parents of
children with
disabilities Mothers of children with
Future anxiety
Bujnowska et (majority had ASD) disabilities had higher
Future Anxiety Cross- (about health and
al., 2019 [88] and 103 parents of general levels of future
Scale-FAS1 sectional meaning of their
A children with anxiety than fathers of
life)
normal children with disabilities.
development
(Poland)
Maternal depression was
Several scales to
associated with child
measure behavior, 143 mothers of
behavioral problems,
Carter et al., family newly diagnosed
Longitudinal Ages 2-3 years Depression maternal anxiety symptoms
2009 [34] BC environment, toddlers with ASD
and poor mood, low
maternal efficacy, (USA)
parenting efficacy, social
etc.
supports, and coping styles.
Chan et al., 40-item Social Cross- 375 parents of Stress There is a positive
2018 [45] BC Communication sectional children with ASD Anxiety association between child
Questionnaire; 13- (China) Depression autism symptoms and
item Maternal depression and anxiety in
 5
Mental Health of Families with ASD

Worry Scale for

children with
chronic illness; 15-
parents. The associations
item Parenting
were mediated by parenting
Stress Index-Short
stress, marital conflicts,
Form; 9-item
family and economic
Patient Health
pressure, and future-related
Questionnaire; 7-
worry.
item Generalized
Anxiety Disorder
Scale.
SDM-5 and Child
Autism Rating Sleep disorders in ASD
Scale (CARS); children were significantly
Social higher than in normally
Responsiveness 1310 with ASD and developing children. The
Chen et al., Scale (SRS); Cross- 1158 normally highest prevalence of sleep
Ages 2-7 Sleep disorder
2021[98] E Autism Behavior sectional developing children problems in ASD children
Checklist (ABC); (China) were bedtime resistance,
Children’s Sleep sleep anxiety, sleep onset
Habits delay, and daytime
Questionnaire sleepiness.
(CSHQ)
Beck Anxiety Anxiety and depression
Index (BAI); highly correlated with stress.
Center for Mothers’ stress and
Davis & Epidemiologic 108 parents (54 Toddlers (M = Stress depression scores were
Cross-
Carter, 2008 Studies Depression mothers, 54 fathers) 26.9 months) Anxiety uniformly higher than
sectional
[49] ABC Inventory (CES-D); (USA) with ASD Depression fathers’ scores. There was no
Parent Stress significant difference in
Index-Short Form anxiety between mothers and
(PSI-SF) fathers.
Duarte et al., Case-control Mothers of 31 29 boys and 2 Stress Having a child with autism
 6
Mental Health of Families with ASD

was a main cause of stress.

children with Other factors responsible for
autism and 31 girls. Mean age stress were little interest in
2005 [44] BC
without autism 6.8 years. people, being an older
(USA) mother, and having a
younger child.
Individual optimism, benefit
finding, coping strategies,
and social (instrumental and
emotional) support
Brief COPE; positively related to their
Benefit Finding Coping relationship satisfaction.
scale; Life Benefit finding However, only benefit
Orientation Test- Optimism finding and seeking
Ekas et al., Cross- 67 couples (64 56 males and
Revised (LOT-R); Relationship emotional support affected
2015 [96] CD sectional married) (USA) 11 females
Couples satisfaction their partner. Note that
Satisfaction Index Spousal/partner instrumental support
(CSI); Whalen and support involves seeking
Lachman scale advice/assistance from
another. Emotional support
involves seeking moral
support (sympathy or
understanding).
Ekas et al., Life Orientation Cross- 124 mothers (USA) Ages under 18 Stress Greater family support was
2010 [50] C Test; Parental sectional Depression associated with increased
Stress Items scale; Optimism Social optimism. Optimism was
Positive and support associated with decreased
Negative Affect parenting stress, depression
Schedule and negative affect. Social
(PENAS); Center support was associated with
for lower depression, negative
Epidemiological affect, and parenting stress.
Studies Depression Mediating and moderating
 7
Mental Health of Families with ASD

Scale (CES-D);
Satisfaction with
Life Scale;
roles were discussed.
Psychological
Well-Being Scale
(PWB)
Four common skills were
taught to fathers, based on
social interaction theory.
Fathers were then asked to
Autism Diagnostic
teach the mothers what they
Interview-Revised
had learned. They found that
(ADI-R); Autism
Ages 3-7 years; Four skills fathers and mothers were
Diagnostic
Elder et al., Cross- 18 males and 1 associated with equally capable of achieving
Observation 18 dyads (USA)
2010 [85] E sectional female with in-home training positive social reciprocity in
Schedule (ADOS);
ASD interventions parents and children with
Vineland Adaptive
autism. The main point
Behavior Scales-
emphasized was that fathers
Survey Form;
are fully capable of
promoting father-child social
interactions and that the
child responds well to them.
Questionnaire on
Resources and Parents of toddlers that had
Families of 46
Stress (QRS); Brief ASD experienced increased
ASD, 25
Symptom stress compared with parents
Estes et al., Cross- developmentally Ages 18-30
Inventory (BSI); Stress of toddlers with
2013[93] B sectional delayed, and 25 months
Aberrant Behavior developmental delay without
typically developing
Checklist; Vineland ASD and typical
(USA)
Adaptive Behavior development children.
Scales (VABS)
Fassett- DSM-5 Level 1; Cross- 356 (70% female) Ages 18-25 (M Depression This study explains how
Carman et al., Cross Cutting sectional were recruited from = 20.8) Anxiety stress can lead to anxiety
 8
Mental Health of Families with ASD

and/or depression. Sources

treatment-seeking of stress or the frequency
Symptom Measure; college students and level thereof indicate
Level 2- assessed at the one more than the other. For
2020 [46] C
Depression; Level Brandeis example, more severe or
2-Anxiety Counseling Center dramatic stress correlates
(USA) with anxiety more than
depression.
This article provides an
overview of selected
interventions that do not
Meta- require a specialist in
Fida et al., Stress Parent-
analysis of treating individuals with
2019 [37] E Child Interaction
24 studies ASD. These interventions
show increased parent-child
interactions and reduce
parental stress.
Parents of children with
disabilities (9% had autism
or Asperger’s) have greater
risk of depression. Some but
Gallagher & 25-item Strengths
Cross- 8,568 primary 9-yr old school Depression not all of this increased risk
Hannigan, and Difficulties
sectional caregivers (Ireland) children Physical health is attributed to chronic
2014 [65] BC Questionnaire
health conditions. However,
the increased risk was
explained by the child’s
problem behaviors.
García-López Parental Stress Cross- 135 father-mother Ages 3-38. Stress Parents of a child with
et al., 2021 Index (PSI); sectional dyads of children Anxiety autism experience increased
[48] A Hospital Anxiety with ASD (Spain) Positive levels of stress and anxiety.
and Depression contributions Parents of children with
Scale (HADS); severe ASD experienced
Kansas Inventory lower perceptions of positive
 9
Mental Health of Families with ASD

contributions (i.e., learning

by experience, happiness
and fulfillment, personal
strength and family
closeness, understanding the
purpose of life, personal
maturity and growth,
of Parental awareness of future issues,
Perceptions greater social network,
career and job growth, pride
and correction) compared to
parents of mild-moderate
ASD. Mother’s perception
of positive contributions
were higher than father’s
perceptions.
Aging is associated with
change in coping strategies
28 parents (19 from reliance on service
In-depth semi- Longitudinal mothers and providers, family support,
Gray, 2006
structured study – 1988 fathers) of children Ages 4-19 Coping strategies and social withdrawal and
[35] E
interviews through 1990 with autism individualism to coping
(Australia) through religious faith and
other emotion-focused
strategies.
Grebe et al., Revised Illness Cross- 361 biological Stress Mothers had more and better
2021 [69] A Perceptions sectional parents (294 Coping coping compared with
Questionnaire for mothers and 67 fathers, suggesting mothers
ASD (IPQ-R- fathers) of children had more coping skills (e.g.,
ASD); Family with ASD (USA) communicating questions
Adjustment and seeking information) in
Measure (FAM), dealing with their child’s
Parental Stress ASD. Fathers appear to cope
 10
Mental Health of Families with ASD

by leaving the home more

than mothers (e.g., going to
work). Fathers expressed
their emotions and sought
less social support than
mothers. Mothers reported
higher stress than fathers,
particularly among
teenagers, related to their
child’s temperament and
behavioral characteristics.
Index (PSI)-4; Mothers’ higher stress has
Stress Index for been linked with their
Parents of child’s eating, sleeping, and
Adolescents (SIPA) emotional regulation, but
fathers stress is linked with
their child’s externalizing
behaviors. Father and
mother stress is higher when
there child is under 12. Since
ASD is typically first
diagnosed in children under
12, the higher parental stress
may be associated with the
initial diagnosis and
treatment.
Griffith et al., The Strengths and Cross- 168 mothers and Ages 4-17 (M Abnormal Fathers and mothers were
2014 [103] E Difficulties sectional 130 fathers with a = 10.4) behavior more likely to rate siblings
Questionnaire child diagnosed of ASD children as having
(SDQ) with ASD and more emotional problems
another child and lower pro-social
without a diagnosis behavior when compared
of ASD (UK) with normally developing
 11
Mental Health of Families with ASD

children. Mothers identified

more adjustment problems
and conduct problems in
siblings of ADHD children
than normal developing
children.
Social support has a
moderating effect on the
relationship between child
behavioral and emotional
Positive Affect 138 mothers (ages problem and maternal
Scale; Life-short 23-57) with Depression depression. Increased
Halstead et al., Cross-
scale; Hospital intellectual Ages 4-18 Life satisfaction behavior and emotional
2017 [73] BC sectional
Anxiety and developmental Positive affect problems correspond with
Depression Scale disabilities (UK) lower life satisfaction,
higher maternal depression,
and lower positive effect
most profoundly when social
support is low.
Time with
partner, Support ASD parents spent less time
174 couples of
of partner with their partner, lower
children with ASD;
Hartley et al., Diary–14- Closeness with partner closeness, and fewer
179 couples without
2017 [41] A day daily partner positive couple interactions
children with
Positive and than parents of children who
disabilities (USA)
negative couple are not disabled.
interactions
Hartley et al., Cross- 391 parents of Divorce A significantly higher rate of
2010 [97] C sectional children with ASD divorce occurred in families
and matched sample with an autistic child.
of parents of Divorce remained high
children without through the ASD child’s
disabilities. (USA) childhood, adolescence, and
 12
Mental Health of Families with ASD

early adulthood but deceased

following the normal
developing child’s childhood
(after age 8 years). Divorce
was more likely for younger
maternal age when the ASD
child was born and if the
child was born later in the
birth order.
Parent Report
version of the
Depression is significantly
Developmental
greater for mothers than
Behavior Checklist
fathers of children with
(DBC); Autism
autism. There is no
Screening
difference in elevated stress
Questionnaire
levels among mothers and
(ASQ); Hospital
fathers, but mothers had
Anxiety and 41 mother-father
more positive perceptions
Depression scale; pairs at Preschool age
Hastings et al., Cross- Stress than fathers. Maternal stress
Questionnaire on Southampton (M=37
2005 [51] A sectional Depression is related to their partner’s
Resources and Childhood Autism months)
depression and to behavior
Stress Friedrich Program (UK)
problems of their child with
short form (QRS-
autism. Mothers are affected
F); Kansas
more negatively by their
Inventory of
child’s behavior problems
Parental
than fathers. Paternal
Perceptions
depression predicted their
Positive
partners stress.
Contributions Scale
(KIPP-PC)
Hastings, 2003 Developmental Cross- 18 married couples Mean age 11.8 Stress Anxiety Mothers and fathers had
[52] A Behaviour sectional of children with years, 13 males Depression similar levels of stress and
Checklist; Hospital autism (UK) and 5 females depression, but mothers
 13
Mental Health of Families with ASD

experienced greater anxiety

than fathers. Mothers’ stress
Anxiety and was associated with child
Depression Scale; behavior problems and the
Parent and Family fathers’ mental health. On
Problems subscale the other hand, fathers’
of the QRS-F stress is less affected by
other family members but by
other factors.
Developmental
Behavior Checklist
(DBC); Parent and
Family Problems
Mothers rated these children
subscale of the
as having more behavior
Friedrich Short Behavioral
22 siblings of problems and fewer
Hastings, Form of the Cross- problems
children with Ages 4-16 prosocial behaviors. Boys
2003[104] D Questionnaire on sectional Prosocial
autism and individuals younger than
Resources and behaviors
their sibling with ASD had
Stress (QRS-F);
fewer prosocial behaviors.
Strengths and
Difficulties
Questionnaire
(SDQ)
Autism Behavior
Checklist (ABC); Parents had lower stress if
Questionnaire on they had adaptive coping
Resources and strategies, informal social
Hastings, 2001 Stress (QRS); Cross- support sources, and beliefs
141 parents (UK) Mean age = 5.0 Stress
[61] C Family Support sectional about the efficacy of the
Scale (FSS); intervention. Higher stress
Family Coping was associated with greater
Strategies (F- autism symptomatology.
COPES)
 14
Mental Health of Families with ASD

Diagnostic and
Statistical Manual
of Mental Disorder Child emotional and
(DSM)-IV; behavioral problems
Psychoeducational Parents of 123 Stress contributed more to mother
Profile; Vineland children with Child behavioral stress, parental mental health
Cross-
Herring et al., Adaptive autistic disorder and and emotional problems, and perceived
sectional (3 20-51 months
2006 [89] AC Behaviour Scales pervasive problems Family family dysfunction. Father
time points)
parent interview; developmental functioning reported significantly less
Adaptive disorder (Australia) Mental health stress than mothers in
Behaviour relation to parenting their
Composite; Reynell child with ASD.
Developmental
Language Scales
Mothers reported more
positive and negative social
exchanges with family,
friends, and health
professionals than fathers.
Mothers experienced all
three social exchanges
176 families
PANSE; Center for Cross- (informational, emotional,
(couples that had
Hickey et al., epidemiological sectional Ages 5-12; Depression and social); Fathers
been in relationship
2017 [75] A Studies-Depression Dyadic 85% males Social exchange experienced more
for more than 3
Scale Models informational and emotional;
years) (USA)
Not having social exchanges
was a significant indicator of
depression. Positive and
negative social exchanges
with one’s spouse were the
biggest factor related to
depressive symptoms.
Higgins et al., Family Cross- 53 Mean = 10 Marital Having a child with ASD
 15
Mental Health of Families with ASD

Adaptability and
Cohesion
may lower marital
Evaluation Scales
happiness, family
(FACES II); happiness
adaptability, and family
Quality Marriage parents/caregivers Family cohesion
years and 10 cohesion. No evidence of
2005[] BC Index (QMI); sectional of children with Family
months lower self-esteem. Coping
Rosenberg Self- ASD (Australia) adaptability
strategies were not
Esteem Scale; Coping strategies
associated with marital or
Coping Health
family adjustment.
Inventory for
Patients (CHIP)
Quality of Well-
Being Scale Fulfillment
Many parents had fulfillment
(QWB-SA); Relationship
in caring for their child with
Primary Caregiver problems Mental
ASD. However, parents
Questionnaire; health problems
often experienced problems
Centers for (including
balancing care for their child
Hoefman et Epidemiologic depression,
Cross- 224 families with and other daily activities,
al., 2014 [19] Studies Depression Ages 4-17 problems with
sectional ASD child (USA) had financial challenges or
F Scale (CES-D); daily activities,
suffered from depression.
CarerQol-VAS; financial
CarerQol was shown to be
CarerQol-7D; Self- problems,
valid in assessing the impact
Rated Burden disability-related
of caregiving on parents of
(SRB) Scale; support, physical
children with ASD.
Family Quality of health problems).
Life Scale (FQLS)
Hoffman et al., Parenting Stress Cross- Mothers of children 20 female ASD Stress Mothers of children with
2009 [53] BF Index sectional with autism (104) children, 84 Depression ASD reported higher levels
and mothers of male ASD of stress and depression than
typically developing children; 136 mothers of normally
children (342) female normal developing children.
(USA) developing Although mothers of ASD
child, 205 male children deal with more
 16
Mental Health of Families with ASD

normal
developing
children (Ages
3-16) (M = 8.6 stress, they still feel they
in the ASD have a close relationship
group and 8 in with their child.
the normal
developing
group)
Mothers and fathers who had
difficulties coping with
emotional challenges had
greater perceived stress
when caring for their child
Difficulties in with ASD. Higher stress
Emotion perception then resulted in
Regulation Scale Ages 7-12 (M fewer bonding behaviors,
(DERS); Parenting = 10.4); more overprotection, and
Hu et al., 2019 Cross- 211 mother-father
Stress Inventory- clinical Stress less care for their child.
[87] ABC sectional pairs (China)
Short Form (PSI- diagnosis of Mothers were more easily
SF); Parenting ASD overwhelmed by emotional
Bonding regulation. On the other
Instrument (PBI) hand, fathers were more
likely to ignore their own
mental health issues.
Mothers’ stress was not
associated with their
spouses’ care behaviors.
Huang et al., Revised Autism Cross- 80 mothers of ASD 34 low- Stress Neuropsychiatric symptoms
2019 [54] BC Diagnostic sectional children (China) functioning Anxiety and parental stress are
Inventory; ASD and 46 Depression significantly greater in
Neuropsychiatric high- Apathy mothers of ASD children.
inventory; functioning Irritability Low-functioning ASD was
 17
Mental Health of Families with ASD

associated with significantly

Parenting Stress higher depression, anxiety,
Agitation
Index-Short Form; apathy, irritability, agitation,
Nighttime
Multidimensional ASD nighttime behavior
behavior
Scale of Perceived disturbances, and change in
disturbance
Social Support appetite versus the high-
functioning ASD group.
Hospital and
Anxiety Depression
Scale;
Mothers reported higher
Questionnaire on
161 mother/father stress, anxiety, and
Resources and
couples taken from depression but greater
Jones et al., Stress-Short Form Cross- Stress Anxiety
another study that Ages 4-16 positive gain than did
2014 [55] AC (QRS-F); Positive sectional Depression
focused on sibling fathers. The child’s behavior
Gain Scale (PCS);
well-being (UK) was the biggest predictor of
Social
psychological distress.
Communication
Questionnaire
(SCQ)
High stress was associated
with low spousal support.
Stress Emotion-
Unlike women with strong
based coping
spousal support, mothers
Jose et al., Perceived Stress Cross- 99 mothers and 11 strategies
with low spousal support
2021 [68] AC Scale (PSS-10) sectional fathers (India) Spousal support
experienced difficulty
in care of child
interacting with others and
with ASD
felt a low level of
acceptance.
Karaivazoglou Hospital Anxiety Cross- 130 parents; 95 Any kind of Anxiety Parents of developmentally
et al, 2019 [26] and Depression sectional children referred for developmental Depression impaired children have
ABC Scale;Short Form evaluation, 35 disorder Quality of life greater depression, anxiety,
36 Health Survey healthy children worse social functioning and
(Greece) social health. Mothers have
 18
Mental Health of Families with ASD

greater anxiety, bodily pain,

lower vitality, and poorer
social function and mental
health. More children in the
family equates to higher
anxiety. Older aged children
corresponded with higher
parental anxiety, emotional
problems, and worse mental
health.
Mothers experienced more
positive experiences than did
fathers. Positive experiences
(e.g., improved family
Ages 5-12 (M
relationships, source of
= 7.4) with
Parenting Stress happiness, personal
ASD,
Index-Short Form, development, a better
Kayfitz et al., Cross- 23 mother/father Asperger’s Stress Positive
Positive understanding of life goals)
2010 [79] AF sectional couples (Canada) disorder, or experiences
Contributions were negatively associated
pervasive
Survey with reports of parental
developmental
stress. Positive experiences
disorder
were negatively associated
with their partners’ report of
parental stress in fathers but
not mothers.
Koukouriki et Children’s Cross- 118 siblings of Ages 9-13 Lonely Social A study of siblings of
al., 2021 [102] Loneliness and sectional children with ASD; dissatisfaction children with ASD found
D Social 115 siblings of that while the firstborn child
Dissatisfaction normally does not experience greater
Questionnaire developing children likelihood of feeling lonely
(LSDQ) (Greece) and socially dissatisfied, a
child later in the birth order
who is a sibling of a child
 19
Mental Health of Families with ASD

with ASD is more likely to

feel lonely and socially
dissatisfied.
Mothers of children with
ASD experience higher
levels of depression and
Beck Depression Ages 2-16 (M
anxiety and poorer levels of
Index, Beck = 6.26), living
Kousha et al., Cross- 127 mothers of Anxiety health-related quality of life.
Anxiety Index, in an urban or
2015 [27] B sectional ASD children (Iran) Depression More severe depression and
WHO Quality of rural
lower health-related quality
Life-BREF community
of life was associated with
an older child with ASD and
diagnosis at an earlier age.
Kwok et al., Devaluation of Cross- 160 mothers of Ages 2-6 Depression Negative associations were
2014 [28] C Consumer Families sectional preschool children Marital observed between perceived
scale; Caregiver with disabilities satisfaction stigma and marital
Burden Inventory; (Hong Kong) Perceived stigma satisfaction and perceived
Kansas Marital Perceived burden caregiving burden and
Satisfaction Scale marital satisfaction.
(KMSS) Perceived burden mediated
the association between
perceived stigma and marital
satisfaction. Stigma
negatively predicted
caregiving burden. Other
mediators of the association
between perceived stigma
and marital satisfaction were
perceived social, emotional,
and developmental burden.
Developmental burden was
associated with depression.
Physical and social burdens
 20
Mental Health of Families with ASD

were also associated with

depression.
Social support had a positive
effect on family cohesion
and adaptability. Social
support in the form of
subjective support (an
167 caregivers of
Social Support individual’s level of
children with ASD
Rating Scale; Social support satisfaction of being
Lei & Kantor, Cross- recruited through
Family Ages < 18 Family cohesion supported) and utilization
2021 [95] E sectional teachers in special
Adaptability and and adaptability support (degree individuals
education schools
Cohesion Scale make use of available social
(China)
support), but not objective
support (visual or actual
social support), were found
to increase family cohesion
and adaptability.
Parenting Stress
ASD child ages
Index-Short Form;
29-48 months Children with ASD
Children’s Sleep
(M = 39); experienced more sleep
Habits 66 mother-child
Normally problems than normally
Questionnaire; dyads, 35 ASD
developing developing children. Sleep
Levin et al., Maternal Cross- children 31 Disruption to
child ages 25- problems in children with
2016 [99] C Cognitions about sectional normally parental sleep
48 months (M ASD contributed to a
Infant Sleep developing children
= 36); majority disruption of sleep in their
Questionnaire; (Isareal)
of children mothers and increased
Parental Bedtime
were males in parental stress.
Behavior
both groups
Interaction
Marquis et al, Longitudinal Children with Depression and Significantly higher levels of
2020 [36] AB – matched developmental other mental depression and other mental
population- disability (Canada) health problems health problems occurred in
level data mothers and fathers of
 21
Mental Health of Families with ASD

children with developmental

disability.
Studies on marital stress
resulting from having a child
with ASD are few and
mixed. Stress is greater for
parents of children with
ASD due to the permanency
of the condition, lack of
acceptance of behavior, low
Marital stress levels of support available,
Parental stress economic burden, concern
Meadan,
Sibling stress for the child’s future,
Halle, et al., Literature
Familial coping challenging behavior, and
2010 [29] Review
strategies psychological characteristics
BCD
Sources of of the parents (self-efficacy,
support locus of control, coping
style). Studies assessing
sibling stress are few and
inconsistent. Use of coping
strategies and social support
(including respite care) can
lower parental and family
stress and increase family
cohesiveness.
Meadan, Literature Focus on siblings of Ages 3-18 Social, The reviewed studies
Stoner, Angell, Review (n = ASD children emotional, and showed mixed results with
2010a [23] D 12) behavioral respect to outcome and
adjustment of adjustment variables for
siblings of siblings of individuals with
individuals with ASD. While some studies
ASD showed positive effects in
terms of self-concept and
 22
Mental Health of Families with ASD

social competence, other

studies showed negative
effects like low levels of
prosocial behavior, increased
internalizing and
externalizing problem
behavior, feelings of
loneliness, and delays in
developing social skills.
Maternal stress was
Parenting stress
positively associated with
questionnaire;
the children’s ASD
coping orientation
symptoms. Maternal stress
to problems
was negatively associated
experienced scale;
Miranda et al., Cross- with engagement coping and
strengths and 52 mothers (Spain) Stress
2019 [63] E sectional social functioning support.
difficulties
Significant mediators
questionnaire; and
between ASD symptoms and
Duke-UNC social
maternal stress were
support
engagement coping and
questionnaire
behavioral difficulties.
Major depressive disorder
was diagnosed in 45% of
6 schools in Dhaka mothers, proportionally
metropolitan city. higher in those who worked
Patient Health
Naheed et al., Cross- 388 mothers (ages > outside the home, had no
Questionnaire Depression
2019 [76] BC sectional 18) with ASD childcare support, and had
(PHQ-9)
children low satisfaction with their
(Bangladesh) providers when they sought
treatment for their ASD
child.
Navot et al., Cross- 22 mothers (USA) Ages 2-4 Qualitative study A sense of competence,
2016 [81] E sectional; focusing on taking things a day at a time,
 23
Mental Health of Families with ASD

and emotional support from

a spouse can effectively
family vision and
interviews promote maternal well-being
planning
when raising a child with
ASD.
There was a relationship
between stigma and
depression, psychological
distress, psychological
wellbeing, psychological
12 papers; autism-
burden, and general mental
Papadopoulos related stigma effect
Literature Mental health health. Stigma consist of
et al., 2019 on caregivers
Review factors blaming the caregiver for the
[30] C (primarily mothers)
onset of autism, poor child
mental health (UK)
development, the caregiver
should be ashamed, that they
lack competence in their
caregiving, that they should
be avoided or pitied.
Parental Stressor
Sale; Childhood
Autism Rating
Scale-Parent Mothers of ASD children
Phetrasuwan 108 mothers of
Version; Center for Cross- Ages 3-10 (M Stress had more stress and
and Shandor, ASD children
Epidemiologic sectional = 6) Depression depressive symptoms and
2009 [56] B (USA)
Studies Depression lower levels of well-being.
Scale;
Psychological
Well-Being Scale
Pisula and Family Cross- 35 fathers of ASD Ages 7-17; at Empowerment Empowerment, defined, as
Banasiak, Empowerment sectional children; 37 fathers least 3 years the ability to actively satisfy
2019 [92] E Scale; Ways of of Downs since diagnosis one’s needs and gain control
Coping Syndrome children; of one’s life, is key to
 24
Mental Health of Families with ASD

adapting to having a child

with disabilities. Fathers of
Questionnaire; children with autism had
40 fathers of normal
Social Support lower empowerment. In
developing children
Questionnaire fathers of children with
(Poland)
Short Form ASD, they found no
association between social
support and empowerment.
Ages 4-14
Vineland Adaptive Challenging behavior, social
years (M =
Behavior Scales, disability, and adaptive
Postorino et Parents of 298 5.8), diagnosed
Aberrant Behavior Cross- functioning are common
al., 2019 [66] children (259 males, with ASD, and Stress
Checklist; sectional contributing characteristics
BC 39 females) (USA) have severe
Parenting Stress to stress for parents of
behavior
Index children with ASD.
problems
This review focused on the
father’s role in a family
raising a child with ASD.
The review found that
fathers are less involved than
mothers in child rearing
activities. The authors also
note that fathers are not
Rankin et al., Literature
usually included in research
2019 [31] AE Review
for raising children with
ASD. The authors concluded
that an intervention that
teaches both parents to be
equally involved in child
rearing could be effective in
improving the overall family
unit.
Rao & Beidel, Parenting Stress Cross- 12 mothers and 8 Ages 8-14 Stress, family Parents of children with high
 25
Mental Health of Families with ASD

functioning autism
Index, Family experienced significantly
Environment Scale; functioning, greater stress than parents of
psychological psychological children without
problems; problems, psychological disorders,
symptom-90- general physical depending on the
2009 [86] B Revised, SF-36; sectional fathers (USA) and mental characteristics of the
Piers-Harris health, sibling children. Higher intellectual
Children’s Self- adjustment, child functioning of the high
Concept Scale; behavior functioning child with
Child Behavior problems autism did not compensate
Checklist for the greater stress
experience by the parents.
Mothers of children with
32 mothers of autism experienced
Riahi & Izadi- General Health children with Mental Health significantly more mental
Cross-
mazidi, 2012 Questionnaire autism and 29 Anxiety health problems, anxiety,
sectional
[72] B (GHQ) mothers of children Insomnia and insomnia than mothers
without the disorder with normal functioning
children.
Childhood Autism
Rating Scale
Mothers and fathers had
(CARS); Wechsler
stress reaching a clinical
Preschool and
threshold. Fathers’ stress
Primary Scale of
was associated with the
Intelligence
Rivard et al., Cross- 118 fathers and 118 Pre-school child’s sex and age.
(WPPSI-III); Stress
2014 [25] AB sectional mothers (Canada) aged children Mothers’ stress was
Adaptive Behavior
positively associated with
Assessment
the child’s age. The father
System-II (ABAS-
had greater stress if the
II); Parenting Stress
autistic child was female.
Index-Short Form
(PSI/SF)
 26
Mental Health of Families with ASD

Reduction of parental stress

Quality of life occurred through
Parent stress mindfulness/relaxation
Rutherford et Meta-
Self-efficacy training. In addition, parent
al. 2019 [41] E analysis
Parenting style style and satisfaction was
and satisfaction improved through parent
training and education.
Time Crunch Scale;
Mothers caring for children
International
with autism had higher rates
Support Evaluation
of mental health problems.
List (ISEL);
Ages 6-17 (M Mothers with more social
Sawyer et al., General Health 216 mothers
Diary = 11); 88% Depression support had fewer mental
2010 [43] BCE Questionnaire (Australia)
males health problems. Mothers
(GHQ); Center for
feeling more time pressure
Epidemiological
reported a higher level of
Studies Depression
depression.
Scale (CES-D)
There was a higher risk of
Scherer et al., Meta-
6 studies Depression depression among parents of
2019 [38] B analysis
children with autism.
Approximately 17% of
fathers of ASD children had
159 fathers of ASD higher risk for psychological
children, 45 fathers distress (nervousness,
Seymour and of children with a hopelessness, and
Cross- Distress
Wood, 2017 Kessler-6 long term disability, Ages 8-9 years worthlessness); 16%
sectional Overall health
[58] B and 6,578 fathers of reported poor global health;
normal developing and 16-18% engaged in
children (Australia) adverse health behaviors
(e.g., alcohol abuse, cigarette
smoking).
Shivers and Multiple Affect Cross- 97 with a brother or Ages 12-18 (M Siblings reported This study focused on
McGregor, Adjective Checklist sectional sister; 26 = 14.4) on anxiety, sibling’s perceptions of their
 27
Mental Health of Families with ASD

hostility, and brother or sister with

—Revised positive affect. developmental disorders.
(MAACL-R); participants had a Parents reported Parent’s perceptions and
Revised Life brother or sister on general sibling’s perceptions did not
Orientation Test with ASD, 23 optimism, child always match. Overall,
(LOT-R); Family participants had a behavior siblings did not feel negative
2019 [105] D
Impact brother or sister problems, and emotions toward the affected
Questionnaire with a different perceptions of sibling while parents often
(FIQ); Behavior developmental how the child reported a more negative
Problems Index disorder (USA) impacts the perception of the impact the
(BPI); family (and individual with the disability
sibling). had on the family.
Forty-four percent of parents
reported severe family stress
associated with raising a
child with ASD. Factors
associated with severe
535 families with Response to the family stress were reduced
one or more question: “How ability to socialize, no access
children with ASD. would you rate to individual therapy,
Sim et al., Cross-
Random sample your family’s negative spousal
2018 [67] BC sectional
follow-up (6 overall stress due relationships, and high out of
months later) to your child’s pocket costs because of the
(Australia) ASD diagnosis?” child. The study did not find
comorbid conditions,
sociodemographic variables,
or social support as
contributors to severe family
stress.
Siu et al., 2019 Strength and Cross- 177 parents of Ages 6-11 Stress Parents of children with
[74] BC Difficulties sectional children with ASD Child behavior ASD have significantly
Questionnaire and 554 parents of higher stress, with the
(SDQ); Parent typically developing relationship mediated by
 28
Mental Health of Families with ASD

Stress Index-Short
children (China) child behavioral problems.
Form (PSI-SF)
The parental stress index
Childhood Autism
positively correlates with the
Soltanifar et Rating Scale-Parent 42 couples with
Cross- childhood autism rating
al., 2015 [77] (CARS-P); children with ASD Ages 2-12 Stress
sectional scale. Mothers have
A Parenting Stress (Iran)
significantly higher stress
Index
than fathers.
ASD children are more
prone to sleep problems due
to arousal dysregulation and
sensory hyper-reactivity.
Souders et al., Literature
Sleep disorder Improving sleep in ASD
2017 [32] E Review
cases may involve sleep
education, ecological and
behavioral interventions, and
exogenous melatonin.
Parents of children
with developmental,
behavioral, Behavior problems in the
neurological, and ASD child was the greatest
Parenting Stress emotional problems factor contributing to high
Spratt et al., Index-Short Form; Cross- (57), parental stress. They
Ages 4-12 Stress
2007 [64] E Family Resource sectional intraventricular conclude that clinics and
Scale hemorrhage mental health professionals
documented at birth need to collaborate to help
(70), and neural parents deal with this stress.
tube defects (45)
(USA)
Stewart et al., Parenting Stress Cross- 74 Children with Stress Parents of children with
2015 [70] BC Index Short Form sectional Tourette syndrome, Tourette syndrome had
(PSI-SF) 48 normally increased stress compared
developing children with the parents of normally
 29
Mental Health of Families with ASD

developing children. The

increased stress was due to
(USA)
co-occurring ADHD and
OCD.
Mothers of autistic children
redefined what constitutes
the fulfillment of various
human needs and/or they
sought to find alternative
ways to fulfill them. These
mothers placed less
emphasis on their careers
Autism Behavior and focused more on their
Checklist (ABC); parental role; spent more
Home/Career 58 mothers, 29 leisure time with extended
Tunali & Questionnaire; children with family members; put less
Cross- Ages 5-14, 22 Coping and
Power, 2002 Self-Rating autism and 29 emphasis on what others
sectional boys, 7 girls redirection
[84] E Depression Scale; children without thought about their child’s
Short-Marital autism behavior; put more
Adjustment Test emphasis on spousal
(SMAT) support and the parental
role in discussions about
marriage; open to more
than one interpretation
about their child’s
behavior; and showed a
tendency toward a greater
overall tolerance of their
child’s behavior.
Twoy et al., Family Crisis Cross- 55 parents of Ages < 12 Stress Parents of children with
2007 [91] E Oriented Personal sectional children with Family coping ASD are resilient in their
Evaluation Scales autism (USA) ability to adapt to challenges
 30
Mental Health of Families with ASD

of raising children with

autism. Coping strategies
included using social support
(F-COPESs) from close friends and
extended families. Stress
was high among families of
children with autism.
Parents of children with
Parenting Stress 50 families of
ASD has significantly higher
Index-Short Form children with
Stress stress. Parental stress was
(PSI-SF); autism and 50
Valicenti- Sleep problems related to child sleep and
Gastrointestinal families of children
McDermott et Cross- Ages 2-18 with Behavioral behavioral problems, and
Questionnaire, with other
al., 2015 [24] sectional ASD difficulties gastrointestinal symptoms.
Child Sleep Habits developmental
BC Gastrointestinal Parental stress was not
Questionnaire, and disabilities matched
symptoms associated with age or time
Aberrant Behavior by age/gender
since the child was
Checklist. (USA)
diagnosed.
Waizbard- Tedeschi and Cross- 19 parents (14 Ages 9-26 (M Qualitative The study demonstrated that
Bartov et al., Calhoun’s Crisis- sectional; mothers, 5 fathers) = 15.8), with growth narratives parents’ interaction with
2018 [78] F Related Growth Interview (Israel) varying levels their ASD children may
Model of required have positive perspectives
support that result in personal
growth. Growth experiences
were described as personal
strength and inner power,
insights, more intimate
relationships, and stronger
marital bonds.
Walton and Strengths and Cross- 163 mothers of two Ages < 18 Behavior Siblings of children with
Ingersoll, 2015 Difficulties sectional of more children Emotion ASD had similar
[101] DE Questionnaire with ASD; 69 emotional/behavioral
(SDQ); Social siblings of ASD adjustment but less
Responsiveness children, 93 siblings involvement and more
 31
Mental Health of Families with ASD

Scale (SRS),
Sibling Inventory
of normally
of Behavior (SIB); avoidant of their sibling as
developing
Center for normally developing
children, all
Epidemiologic children. Older male siblings
recruited through
Studies Depression were at greater risk for
Interactive Autism
Scale (CES-D); behavioral/emotional
Network (IAN)
Family Impact difficulties.
(USA)
Questionnaire
(FIQ)
Depression Anxiety
Stress Scales-21
Item (DASS-21);
Connor Davidson
Resilience Scale Psychological outcomes
(CD-RISC-25); primarily related to
Short Form individual coping responses.
Developmental Avoidance strategies (self-
Cross-
Whitehead et Behaviour 438 female Stress Anxiety blame, denial, emotional
sectional; Ages < 18 with
al., 2015 [57] Checklist (DBC- caregivers Depression venting, and disengagement)
national ASD
E P24); Locus of (Australia) Resilience associated with stress,
survey
Control of anxiety, and depression.
Behaviour Scale Planning, acceptance, and
(LCB); Brief positive reframing
COPE; Social characterize resilience.
Support Index
(SSI); Service
Obstacles Scale
(SOS)
Yirmiya & Meta- Anxiety Parents of children with
Shaked, 2005 analysis Depression ASD experience higher risk
[39] B Mania of psychiatric difficulties.
Obsessions
 32
Mental Health of Families with ASD

Neuroticism
Schizophrenia
Psychiatric
disorders
Chinese version of Perceived family support
the Beach Center and family quality of life
FQOL scale; was low and parental stress
Zeng et al., Family Support Cross- Ages 7-12 (M Stress Family was high. Family support
226 parents (China)
2020 [94] C Scale; Parenting sectional = 10.3) quality of life had a direct, positive effect
Stress Inventory- on family quality of life and
Short Form (PSI- indirect effect on family
SF) quality of life through stress.
7 prospective
studies resulting in
25,271 participants Short and long sleep
Zhai et al., Meta- for a short sleep duration was significantly
Adults Depression
2015 [40] E analysis duration and 23,663 associated with increased
participants for a risk of depression in adults
long sleep duration
(China)
Mothers of ASD children
have higher levels of anxiety
9-item Patient 167 mothers who and depression. The study
The majority
Health spent at least 4 indicates that maternal
Zhou et al., Cross- were boys with Anxiety
Questionnaire; 7- hours/day with anxiety and depression can
2019 [82] E sectional average age of Depression
item Generalized ASD individual be lowered by using
5 years
Anxiety Scale (China) interventions to monitor and
lower core symptoms of
children with ASD.
A Compared mental health between mothers and fathers
B Parental mental health directly related to ASD
C Parental mental health indirectly related to ASD
D Sibling mental health
 33
Mental Health of Families with ASD

E Ways to reduce mental health problems

F Positive family outcomes associated with ASD children