Background

Autism Spectrum Disorder (ASD), according to the American Psychiatric Association (2013), is a neurodevelopmental condition with diverse manifestations, reflecting the spectrum nature of the disorder. It involves persistent deficits in social communication, interaction, and repetitive behaviours, impacting daily functioning. The global prevalence is estimated at about one in 100 children, with a rising diagnostic rate attributed to increased awareness (Zeidan et al., 2022). In India, with a population exceeding 1.3 billion, it is estimated that over 2 million individuals, mainly children below 15 years of age, might be affected by ASD (Krishnamurthy, 2008).

In contrast to other developmental disorders, ASD lacks a distinct biological marker, making early diagnosis challenging due to the absence of definitive testing. Consequently, the prognosis for autism is fraught with uncertainty, adding complexity and ambiguity to the disorder which makes it challenging for the parents to cope (Dillenburger, 2002; Gupta & Singhal, 2005).

Parenting a child with autism often induces more anxiety and tension compared to parents of non-disabled children, requiring substantial effort, time, and patience (Sanders & Morgan, 1997; Picardi et al., 2018). Previous studies highlight that certain behavioral, social, and cognitive traits of children with ASD contribute to increased psychological distress in parents (Gupta & Singhal, 2005; Estes et al., 2009; Hamlyn-Wright et al., 2007). Mothers, usually the primary caregivers, experience heightened parenting stress in caring for a child with ASD (Phetrasuwan & Shandor Miles, 2009; Bohadana et al., 2021; Tunali & Power, 2002).

Coping with stress poses a significant challenge (Dardas & Ahmad, 2015; Smith et al., 2008). According to Lazarus and Folkman (1984), coping involves the behavioral and cognitive abilities to manage internal and external demands during stressful situations, with two proposed mechanisms: problem-focused, addressing stressors directly, and emotion-focused, dealing with associated emotions. Hastings et al. (2005) identified four coping categories for parents of children with ASD: active-avoidance, problem-focused, positive coping, and religious/denial. Coping critically influences stress mastery, determining adaptability or maladapt ability (Lyons et al., 2010; Brown et al., 2020). A parent's ability to handle high stress associated with a child with ASD depends on the efficacy and quantity of coping mechanisms (Zablotsky et al., 2013). In this context, active-avoidance and religious/denial coping are reported as maladaptive for mothers, linked to reduced well-being, increased depression, anxiety, and stress (Seymour et al., 2013). This review aims to explore the diverse coping mechanisms employed by mothers navigating stressful situations and challenges associated with raising children with autism.

Materials and Method

Electronic Database Searching

A literature search was conducted using broad search terms to be inclusive of articles examining the coping responses of mothers who are the primary caregivers of children with autism. To access relevant literature on the subject, various databases, such as PubMed, Google Scholar, and PsycINFO, were searched. These databases were chosen due to their coverage of pertinent subject matter and key areas, ensuring the retrieval of relevant articles. The following keyword search terms were used “autism spectrum disorder OR autism” AND “primary caregivers OR caregivers” AND "mothers” AND “coping mechanisms OR coping strategy OR coping responses OR coping skills.”

Study Selection Criteria

The studies were included using the following selection criteria:

Inclusion Criteria:

  1. 1.

    Original research studies in the last 15 years

  2. 2.

    Samples including mothers who are primary caregivers of children with autism

  3. 3.

    Studies focusing mainly on coping strategies, coping skills, and coping mechanisms of mothers of children with ASD.

Exclusion Criteria:

  1. 1.

    Studies that include coping of other family members.

  2. 2.

    Studies which are not published.

Data Extraction

The extracted data were assessed based on eligibility criteria. The literature search identified 98 references from different database. The articles were evaluated based on relevance, appropriateness, clarity, and methodology. Selection of reviewed articles were done using the PRISMA flow diagram (see Fig. 1). A total of 90 articles were screened by tile and abstract. The included studies had varying designs, reporting styles, research methodology, systematic review and abstract. The researcher screened each article and excluded unrelated studies based on the eligibility. Finally, sixteen studies were included in this review (see Table 1).

Fig. 1
figure 1

PRISMA flow diagram showing the study selection process

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Table 1 Characteristics of included studies
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Results

Summary of Findings

Numerous research studies have demonstrated that employing adaptive and healthy coping mechanisms directly contributes to improved well-being and quality of life. In a study conducted to understand how mothers of children with ASD utilize diverse coping strategies, findings revealed that positive predictors such as instrumental and emotional support, acceptance, positive reframing, active coping, and religious beliefs are significantly related to a higher quality of life. On the contrary, self-blame, distraction, and substance abuse are identified as negative predictors inversely related to the overall well-being of these mothers (Shukla, 2019).

In a separate investigation, 50 mothers were examined through the utilization of the Ways of Coping questionnaire (WCQ), and it was found that engaging in problem-focused coping was associated with positive psychological well-being and a heightened reliance on avoidant coping strategies was linked to increased levels of anxiety and depression among the participants (Cai et al., 2020).

In a study conducted at a children's hospital in Athens, Greece, examining the coping strategies of mothers with children diagnosed with Autism Spectrum Disorder (ASD), 143 participants were surveyed. Results revealed that mothers with higher education levels tended to score lower in both the total F-COPES and the specific aspect of reframing. Increased time devoted to child care and managing medication schedules correlated with lower scores in the reframing aspect. The reframing subscale showed a negative correlation with parental distress, suggesting that lower scores were linked to higher levels of distress. Additionally, the passive appraisal coping strategy was positively correlated with depressive symptoms (Ntre et al., 2022).

In a correlational study, Qodariah et al. (2016), sought to examine the relationship between mothers' levels of patience and their coping strategies when raising children with autism. Findings indicated a positive correlation, suggesting that higher levels of patience, particularly in managing the challenges associated with parenting a child with autism, were associated with more effective coping.

In a different study utilizing the Coping Health Inventory for Parents (CHIP), it was observed that as the use of helpful coping strategies increased, maternal stress scores exhibited a decrease. On average, mothers employed approximately 33 coping strategies, with 81% of them reported as beneficial. The coping strategy deemed most effective among participants was "believing that my child will get better.” Conversely, strategies such as "explaining our family situation to friends and neighbours so they will understand" and "eating" were identified as the least helpful. Additionally, the least frequently employed strategy was "going out with my spouse on a regular basis" (Kiami & Goodgold, 2017).

Eleven mothers who participated in in-depth interviews revealed that the most effective coping mechanisms for them included spending time alone, making plans ahead of time, educating themselves, changing the way they saw their problems, and collaborating with their spouse. Less assistance was reported from formal support groups (Kuhaneck et al., 2010).

In another study that used the Brief COPE scale, it was found that mothers who used more active engaged coping strategies and those with enhanced sustained attention engaged more in mutual positive affect with their child (Zaidman-Zait, 2020).

Efforts to evaluate coping strategies and their connections to irrational beliefs and emotional distress showed that mothers who participated in the study demonstrated a positive and statistically significant correlation between coping strategies like self-blame, catastrophizing, and rumination, and emotional distress. Moreover, both self-blame and catastrophizing strategies were positively and significantly correlated with irrational beliefs. These results suggest that engaging in maladaptive coping strategies is linked to heightened levels of irrational beliefs and emotional distress (Predescu et al., 2013).

A longitudinal study involving 113 mothers yielded findings that linked the use of avoidant coping strategies, such as distraction and disengagement, to higher levels of anger and depression in mothers, while cognitive reframing was linked to higher levels of maternal well-being. There were multiple cases where the impact of coping on maternal outcomes was mitigated by the characteristics of the child, specifically the degree of maladaptive behaviour (Benson, 2010).

In another investigation employing brief COPE, results indicate that mothers predominantly relied on the coping strategies of “Religion,” “Acceptance,” and “Positive Reframing” whereas the least utilised coping strategies were behavioural disengagement, denial, and humour (Al-Kandari et al., 2017).

In a study employing a cohort sequential design and multilevel modeling with a sample of 113 mothers, the effects of four coping strategies (engagement, disengagement, distraction, and cognitive reframing) on various measures of maternal adjustment were examined over a 7-year period. The findings revealed that an increased use of disengagement and distraction was associated with a gradual decline in maternal adjustment over time. On the other hand, an enhanced utilization of cognitive reframing was linked to improved maternal outcomes. Additionally, the results suggested that the application of different coping strategies at times moderated the effects of child behaviour on maternal adjustment (Benson, 2014).

In an attempt to explore manifestations of coping present in both the content and form of the stories told by a group of mothers of children with autism, five mothers were interviewed, and the narratives revealed a prominence of cognitive coping strategies in life stories, emphasizing the emotional and cognitive experiences of the storytellers. Moreover, discrete coping episodes in the stories provided insights into behavioural coping strategies implemented in specific situations (Marshall & Long, 2010).

Another study underscored a notable connection between elevated levels of fatigue in mothers and the adoption of maladaptive coping strategies, such as self-blame and disengagement. This, in turn, was linked to heightened maternal stress.

Another investigation demonstrated a negative correlation between engagement coping and social functional support. Through multiple mediation analysis, it was found that engagement coping and behavioural difficulties served as significant mediators in the association between ASD symptoms and parenting stress. Notably, the engagement variable exhibited a more pronounced effect in this relationship (Miranda et al., 2019).

Another research investigation employing the Coping Strategies Questionnaire observed that mothers commonly employed emotion-focused and avoidant coping styles, with the problem-focused style being the least frequently utilized (Rasoulpoor et al., 2023).

In the case of mothers with toddlers, maintaining lower levels of emotion-focused coping and higher levels of problem-focused coping was generally linked to improved maternal well-being, irrespective of the degree of child symptomatology. Conversely, for mothers with adolescents, coping mechanisms frequently served as a protective factor, particularly when autism symptoms were elevated (Selvakumar & Panicker, 2020).

In a study conducted in Kerala, India, researchers utilized the 16-item scale developed by Carver (1989), which encompasses four domains of emotion-based coping strategies: positive reinterpretation, acceptance, religiosity, and emotional support. The study placed particular emphasis on emotion-based coping strategies, focusing on the emotional experiences of mothers. The findings revealed that acceptance, an emotion-focused coping style, emerged as a significant dimension and demonstrated an association with maternal stress levels. Moreover, the study highlighted the protective role of acceptance, indicating that mothers who accept their child's autism diagnosis may experience better mental health and emotional resilience compared to those who struggle to accept it. In terms of emotional support, the study underscored the high importance of support from spouses (Jose et al., 2021).

In another study aimed at understanding whether coping strategies serve as determinants of the quality of life (QoL) of mothers, it was revealed that specific coping mechanisms significantly influenced their QoL. The findings indicated that mothers who utilized confrontative coping, distancing, self-control, accepting responsibility, and escape avoidance as coping processes tended to report lower QoL scores. Conversely, those who employed coping strategies such as seeking social support, planful problem-solving, and positive reappraisal tended to have higher QoL scores. This suggests that the nature of coping strategies adopted by mothers can significantly impact their overall quality of life (Malhotra et al., 2020).

Discussion

The findings from numerous research studies on mothers of children with Autism Spectrum Disorder (ASD) reveal significant insights into coping strategies and their impact on maternal well-being. Adaptive coping mechanisms are consistently associated with improved quality of life. Positive predictors, including instrumental and emotional support, positive reframing, active coping, acceptance, and religious beliefs, are linked to higher maternal well-being.

Building upon the foundation of adaptive coping mechanisms, mothers navigating the challenges of raising children with Autism Spectrum Disorder (ASD) often turn to their spouses as a primary source of support. This reliance on spousal understanding and assistance highlights the crucial role of interpersonal relationships in maternal coping (Kuhaneck et al., 2010; Higgins et al., 2005). While spousal support is acknowledged as moderately beneficial, the proactive nature of coping strategies becomes evident as mothers actively engage in problem-focused coping, taking intentional steps to address stressors and improve their overall well-being (Selvakumar & Panicker, 2020).

Problem-focused coping or active coping is the process of taking active steps to try to remove or circumvent the stressor and its effects (Selvakumar & Panicker, 2020). Problem-focused strategies have been shown to lower stress levels in parents and improve their quality of life (Wang et al., 2013; Lai & Oei, 2014; Cappe et al., 2011). The commitment to problem-focused coping is notably complemented by the utilization of positive reframing strategies, a cognitive process that involves defining problems in more optimistic terms to sidestep discouragement. This adaptive approach to interpreting challenges positively emerges as a frequently employed and highly effective coping response for mothers facing the stressors associated with ASD parenting (Kuhaneck et al., 2010; Luther et al., 2005). The significance of positive reframing is further underscored by its association with lower levels of depression and stress symptoms, as indicated in various studies (Selvakumar & Panicker, 2020; Lloyd & Hastings, 2008; Pakenham et al., 2005). Beyond individual coping strategies, the exploration of support-seeking behaviours reveals that mothers, in addition to their proactive coping efforts, often seek solace and understanding from their spouses, emphasizing the interconnectedness of emotional support and coping strategies in the maternal journey of ASD (Kuhaneck et al., 2010; Higgins et al., 2005).

As we delve into the multifaceted realm of coping mechanisms, the role of religious beliefs emerges as a complex aspect of parental coping with the challenges posed by raising children with Autism Spectrum Disorder (ASD). Selvakumar's study takes a closer look, revealing that religious coping is a prevalent and commonly employed strategy, aligning with findings from previous research in India and Kuwait that highlight the solace and endurance provided by religious practices in stressful situations (Ekas et al., 2009; Kuhaneck et al., 2010).

Extending the exploration of religious coping, additional studies in Kuwait and Poland shed light on the widespread adoption of religion as a coping strategy among mothers. While the significance of religion in providing meaning and buffering stress is evident in previous research (Krok, 2008; Al Kandari et al. 2017), the complexities of its impact are further underscored by the findings of Ekas et al. (2009). This complexity is highlighted by their discovery that, despite religious beliefs and spirituality being associated with improved parental mental health, greater involvement in religious activities may lead to heightened distress. In understanding coping through religious aspect, it is important to recognize different opinions on how to classify it. Factor analyses from different studies (Kuhaneck et al., 2010; Hastings et al., 2005), reveal discrepancies in classifying religious coping as either beneficial or aligning it with denial. This shows that using religious coping is complex and can take various forms in different situations (Kuhaneck et al., 2010).

While adaptive coping strategies contribute to improved well-being, the scenario shifts when it comes to maladaptive coping approaches such as self-blame, distraction, and substance abuse. Studies consistently link higher usage of avoidant coping to anxiety and depression, underlining the critical impact of coping strategies on overall mental health (Hastings et al., 2005; Su et al., 2018).

As these maladaptive coping patterns unfold, families dealing with a child's mental disorder often find themselves grappling with heightened psychological distress. Research by Abbeduto et al., 2004; Benson 2014; and Predescu et al., 2013, suggests a notable association between psychological distress and the increased adoption of maladaptive coping, particularly strategies like emotion-focused coping and avoidance.

Echoing these findings, Stuart and McGrew (2009) observed a detrimental impact of maladaptive coping on the challenges experienced by parents raising children with autism. Moreover, studies shed light on the heightened vulnerability of parents of children with autism to mental health issues, with an increased likelihood of hospitalization and psychiatric distress (Predescu et al., 2013; Selvakumar & Panicker, 2020).

In conclusion, the intricate interplay between adaptive and maladaptive coping strategies significantly shapes the well-being of mothers raising children with Autism Spectrum Disorder (ASD). While adaptive strategies like problem-focused coping and engagement coping emerge as effective shields against maternal stress and contributors to enhanced psychological well-being, maladaptive coping pathways, encompassing self-blame and avoidance, paint a contrasting picture. The literature consistently underscores the far-reaching consequences of maladaptive coping, revealing associations with heightened anxiety, depression, and psychological distress in families dealing with ASD. As we navigate these complexities, it becomes evident that fostering a supportive environment that encourages adaptive coping mechanisms is pivotal for the holistic well-being of both parents and children in the context of ASD.

Governmental Support Programmes

In order to understand the various support systems provided by different countries for mothers and parents caring for children with autism spectrum disorder (ASD), this review has incorporated a few government-supported programs, schemes, and initiatives. These programs aim to address the unique needs and challenges faced by individuals with ASD and their families. By comparing the outcomes of the coping strategies identified in this study with the support systems offered by different governments, a comprehensive model has been developed to assess the effectiveness and sustainability of the support provided. This model allows for a systematic comparison between the coping strategies identified in this review and the existing government-supported programs, shedding light on areas of alignment, gaps, and opportunities for improvement.

Many government-sponsored programs and initiatives designed to address autism spectrum disorder (ASD) primarily focus on providing assistance and services to children diagnosed with ASD, with fewer resources directed towards supporting caregivers directly. However, even if government-supported programs primarily target individuals with autism, the support and services provided to the child can indirectly benefit the caregiver. For instance, access to specialized therapy services and educational support can contribute to the child's overall development and well-being, potentially reducing caregiver stress and enhancing their quality of life. Additionally, programs that promote community inclusion and social integration for individuals with autism may create opportunities for caregivers to connect with other families, share experiences, and access informal support networks (Reupert et al., 2015) (Fig. 2). However, it is essential to note that these programs may inadvertently overlook the significant role that parents and caregivers play in the lives of individuals with ASD. As a result, there may be gaps in the support available to parents or caregivers, particularly in areas such as access to respite care, caregiver support services, mental health support, and resources for coping strategies. Therefore, while acknowledging the importance of government-supported programs for individuals with ASD, it is crucial to also recognize the need for comprehensive support systems that address the needs of both individuals with ASD and their parents or caregivers. This holistic approach ensures that families receive the support they need to thrive and navigate the challenges associated with raising a child with ASD.

Fig. 2
figure 2

Comparative model of outcome of study and government-supported programs for mothers/parents of children with ASD

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Figure 3 provides a comprehensive comparison of the coping strategies identified in this review study. By linking each intervention to its short-term, and long-term outcomes, this model highlights both the direct and indirect benefits to caregivers. This structured approach not only underscores the effectiveness and scope of existing coping strategies but also identifies gaps and areas for potential enhancement. The model aims to provide a holistic understanding of how different types of support contribute to improving the well-being and resilience of both caregivers and children with ASD.

Fig. 3
figure 3

Intervention-oriented outcome model

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Limitations

While the review paper on coping strategies of mothers with children with autism offers valuable insights, it is crucial to recognize certain limitations, biases, and constraints that could affect how we interpret and apply the findings.

In the included studies 14 out of 16 studies use the likert-type scales. While likert type scales are widely used in social science research for measuring attitudes, opinions, and perceptions, they are not without their limitations. Likert scales, with their limited response options, may not fully capture people's true feelings, leading to less accurate measurements. Respondents may choose neutral options when uncertain, creating a bias. Some may consistently pick extreme options without careful consideration, distorting results. Social desirability bias can also affect responses. Likert scales are influenced by question context, wording, and order, posing challenges in cross-cultural comparisons. They may not capture subtle attitude changes over time. Researchers should be aware of these limitations and consider combining Likert scales with other methods for more reliable social science research (Kusmaryono et al., 2022; Hasson & Arnetz, 2005; Subedi, 2016).

Apart from that, these studies predominantly focus on coping strategies in Western contexts. Research exploring how cultural differences may influence coping mechanisms among mothers in diverse cultural settings is lacking. This leaves a gap in understanding how cultural differences may influence coping mechanisms among mothers in diverse cultural settings. Moreover, many studies only examine the immediate impact of coping strategies, which limits the understanding of the impact due to the evolving nature of these strategies over time. Furthermore, there is limited exploration of how maternal coping strategies directly impact the well-being and development of children with ASD. Additionally, many studies also utilized quantitative measures, which restricted the range of responses from the participants.

Moreover, our review focused exclusively on peer-reviewed published articles, possibly overlooking relevant information from grey literature. While delving deeply into coping mechanisms, we may have missed broader aspects. Factors like socio-economic status, cultural influences, and family dynamics are crucial for a more comprehensive understanding of the experiences of mothers of children with autism.

Future Implications & Recommendations

Future research could benefit from more extensive and longitudinal studies (Cai et al., 2020; Smith et al., 2008) involving diverse samples, which would include mothers from varied cultural backgrounds, socioeconomic statuses, or family structures. This would provide a more comprehensive understanding of the long-term effects of coping strategies on maternal well-being. Further qualitative research could explore in-depth the coping mechanisms mothers find most effective. This could involve examining the specific factors influencing the effectiveness of certain coping strategies and understanding how these strategies evolve over time. While many studies focus on mothers, future research should also explore the coping strategies of fathers or other family members who are the primary caregivers of children with ASD. Understanding their unique challenges and coping mechanisms can provide a more holistic picture of family dynamics. Furthermore, understanding how the maternal coping strategies may have a potential impact on the well-being of the child with ASD can also be explored. This can help in developing interventions that would benefit both mothers and children (Cai et al., 2020). Apart from that, comparative studies to assess coping strategies should be conducted among mothers of children with ASD and other parental groups. This comparative analysis could shed light on the unique aspects of coping in the context of ASD. Moreover, researchers should examine the differential impact of coping strategies based on the severity of ASD symptoms, comorbidities, and the specific needs of the child. This can inform interventions that are tailored to the individual characteristics of children with ASD. Finally, exploration of how culture and societal support impact mother’s coping with the challenges of raising a child with ASD is also crucial.

To best support mothers of children with ASD, interventions and support programs should focus on promoting helpful coping strategies like seeking support, acceptance, positive thinking, and actively addressing challenges. Problem-solving skills are crucial, so interventions should emphasize building these skills. Programs should also identify mothers who may be at risk of using harmful coping methods like self-blame or substance abuse and provide personalized strategies to improve overall well-being.

Parental training programs should include education on effective coping, considering that higher levels of patience and problem-focused coping contribute to better coping for mothers. These implications emphasize the need for a comprehensive and personalized approach, considering individual differences, developmental stages, and the evolving nature of coping strategies.

Conclusion

In conclusion, this review paper has synthesized findings from 18 selected studies focusing on the coping mechanisms of mothers raising children with Autism Spectrum Disorder (ASD). The studies collectively underscore the significance of adaptive coping strategies and problem-focused coping in promoting maternal well-being. However, it is important to acknowledge the limitations, biases, and constraints inherent in the predominantly Western-centric nature of the studies. The review, while providing in-depth insights into coping mechanisms, emphasizes the need for a more comprehensive understanding that considers socio-economic status, cultural influences, and family dynamics. Future research should aim for greater diversity in samples and explore the long-term impact of coping strategies, fostering a holistic approach to supporting mothers of children with ASD.