Introduction
Parenting children with autism spectrum disorder (ASD) can be more stressful and challenging than parenting children with typical development, especially in countries where there is a dearth of various support resources. Across the literature, parents of children with ASD frequently reported higher levels of anxiety (e.g., Stein et al., 2011; Kuusikko-Gauffin et al., 2013; Falk et al., 2014), higher levels of depression (e.g., Stein et al., 2011; Hayes and Watson, 2013; Zablotsky et al., 2013; Falk et al., 2014; Weitlauf et al., 2014), and more health-related problems (e.g., Stein et al., 2011; Dykens and Lambert, 2013; Giallo et al., 2013; Fairthorne et al., 2015). Group comparison research further found parents of children with ASD to have higher levels of stress and lower level of well-being than parents of typically developing children (e.g., Dabrowska and Pisula, 2010; Estes et al., 2013; Hayes and Watson, 2013) and/or parents of children with other developmental disabilities, such as Down syndrome (e.g., Dabrowska and Pisula, 2010; Wang et al., 2011; Dykens and Lambert, 2013; Estes et al., 2013).
Commonly, the sources of stress in parents of children with ASD include the child's inappropriate and unpredictable behaviors/emotional problems (e.g., Tomanik et al., 2004; Herring et al., 2006; Lecavalier et al., 2006; Osborne and Reed, 2009; Estes et al., 2013), severity of the autism symptoms (e.g., Osborne and Reed, 2009; Ingersoll and Hambrick, 2011; Rivard et al., 2014), as well as financial worries secondary to the need to spend for treatment intervention and education (e.g., Sharpe and Baker, 2011; Vohra et al., 2014; Zablotsky et al., 2014; Thomas et al., 2016). Studies have additionally documented the critical role that social support plays in aiding parents of children with ASD to successfully cope with their higher levels of stress (e.g., Tehee et al., 2009; Ekas et al., 2010; Lovell et al., 2012; Weiss et al., 2013); including the importance to gain easy access to and support from mental health professionals (e.g., Mackintosh et al., 2012; Vohra et al., 2014).
When distinguishing between the relative importance of factors that may contribute to parenting stress, research found that the child's emotional and behavioral problems contributed significantly more to mothers' stress, perceived family dysfunction, and parent mental health problems, than the child's dignosis, presence of a development delay, or child's gender (Herring et al., 2006). These findings highlights the importance of examining the underlying sources and predictors that may lead to parenting stress and warn us against simply assuming that the mere diagnosis of ASD in a child is sufficient as a driving factor in increasing parenting stress (Herring et al., 2006). Similarly, findings from another study suggested that regardless of child's age or gender or autism symptom severity, behavioral problems (i.e., higher levels of child hyperactivity) predicted higher parenting levels of distress (McStay et al., 2014).
There have also been mixed findings in regards to the differences in stress levels experienced by mothers and fathers. Whilst some studies have found increased stress levels to be experienced by mothers and fathers as a couple (e.g., Dabrowska and Pisula, 2010; Ingersoll and Hambrick, 2011; Harper et al., 2013), others have instead determined stress levels among mothers and fathers as separate individuals and have found parental differences in the levels of stress experienced. For example, a study found mothers' stress levels to be more greatly affected (Herring et al., 2006), whereas the findings from another study found fathers to report higher levels of stress (Rivard et al., 2014).
When examining families who have a child with ASD, cultural factors are also very important to consider (e.g., Daley et al., 2013; Freeth et al., 2014). In many cases, there is a lack of information about ASD in the society, which may lead to parents of children with ASD to face stigmas, and be influenced by cultural beliefs and/or experience self-blame for their child's diagnosis (e.g., Gray, 2002; Mak and Kwok, 2010; Neely-Barnes et al., 2011; Ravindran and Myers, 2012; Sarrett, 2015; Riany et al., 2016). With the lack of support and adequte knowledge available at the societal level, these families may also struggle to make sense of their child's behavior, which may in turn increase the level of stress experienced and delay diagnosis and treatment planning for the family (Karst and Van Hecke, 2012).
The majority of studies that have investigated parenting stress in parents of children with ASD are conducted in Western or European contexts (e.g., Hayes and Watson, 2013; Ooi et al., 2016). The relatively broader research in the Western and/or European context denotes the greater awareness and support for the autism community in those countries. In contrast, the awareness of mental health and specifically ASD is still growing in the Asian region, and therefore, is still in the early stages of receiving the necessary support (Ilias et al., 2008, 2016; Sun and Allison, 2010; Neik et al., 2014). Hence, it is imperative to determine how support may be catered toward the autism community in the under-investigated Asian countries.
To achieve this, the current paper aimed to review peer-reviewed published studies conducted in Asia (limited to the South East Asian [SEA] region) in regards to parenting stress among parents with children with ASD, and therefore provide a discussion on the sources of stress among this sample, and the variables/ factors that may attentuate the levels of stress experienced by them. It is believed that findings from this review paper will be able to provide insights on the factors related to parenting stress, specific to the SEA region, an under-researched area. Furthermore, it is hoped that the findings will be able to provide a culture-specific understanding of the stress experienced by parents of chidren with ASD in the SEA region and that, the identified stress and resilience factors may serve as sociocultural markers for clinicians, psychologists, and other professionals to consider when supporting and treating parents and families of children with ASD.
Discussion
The present article aimed to review studies conducted in the SEA region, identifying the factors that influence or are associated with parenting stress among parents of children with ASD. Across the 28 studies that were included in this systematic review, four factors associated with parenting stress, were frequently reported: social support, severity of autism symptoms, financial difficulty, and parents' perception and understanding toward ASD. Two other factors were also found to relate to parenting stress, though to a lesser extent; these included parents' anxiety and worries about their child's future, and religious belief. The finding of these six factors could also be categorized in this review as either a source of parenting stress (i.e., severity of autism symptoms, financial difficulty and parents' anxiety and worries about their child's future) or as a coping strategy/mechanism that may attenuate levels of parenting stress (i.e., social support, parents' perception and understanding toward ASD and religious belief).
To a certain extent, findings from this review are comparable to that yielded from the Western context (e.g., Herring et al., 2006; Ekas et al., 2010; Ingersoll and Hambrick, 2011; Lovell et al., 2012; Mackintosh et al., 2012; Estes et al., 2013; Weiss et al., 2013; Rivard et al., 2014; Vohra et al., 2014; Zablotsky et al., 2014; Thomas et al., 2016), particularly in regards to social support, severity of autism symptoms, and financial difficulties. However, cultural variations and/or economic differences were found to underlie the differences in how these factors were uniquely manifested and/or experienced in SEA. For instance, poorer policy and economic support for mental health and special needs in the Asian region (e.g., Foronda, 2000; Ting and Chuah, 2010; Tait and Mundia, 2012; Foo et al., 2014; Ha et al., 2014; Ilias et al., 2016) may have exacerbated the difficulties and challenges faced by parents of children with ASD in these countries in comparison to those in a Western context. Moreover, stigma and discrimination toward ASD, that is relatively more prevalent in an Asian context, might influence how parents of children with ASD are further challenged (e.g., Ting and Chuah, 2010; Rahman et al., 2012; Ha et al., 2014; Ilias et al., 2016).
Furthermore, in the region, parents with lower educational and socioeconomic statuses may be further disadvantaged, identifying later the symptoms of ASD (e.g., Moh and Magiati, 2012) and facing greater risk of stress (e.g., Athari et al., 2013), depression (e.g., Charnsil and Bathia, 2010; Athari et al., 2013), and hopelessness (Vetrayan et al., 2013). As researches suggested, parents from lower socio-educational backgrounds may be a particular group to target and support in terms of education on the early warning signs of ASD and child development in general (Moh and Magiati, 2012).
In regards to the identified factors, this systematic review was able to highlight the beneficial role of social support among parents of children with ASD, and that this social support could be drawn from various sources (e.g., spouse, immediate family, external family, other families of children with ASD, schools, professionals, online). However, it was noteworthy to find contradictory results in regards to the support received by external family members (Foronda, 2000; Yeo and Lu, 2012). This difference may be due to the quality of the already existing relationship between the parent and external family members, whereby a close relationship to a member of the family, regardless if he/she is an external or immediate part of the family, could result in greater social support from him/her. In turn, this observation highlights the equally important need for the social support received to be of high quality. For instance, the findings of the spousal relationship as an important source of social support (e.g., Foronda, 2000; Yeo and Lu, 2012) might have an opposite effect if the spousal relationship was unhealthy and/or violent.
Also noteworthy is that findings on the social support received from extended family members and/or community, seem to imply it as a cultural factor that is typical of the collective and supportive culture in an Asian context (e.g., (Foronda, 2000; Charnsil and Bathia, 2010; Ilias et al., 2016). As such, future studies are recommended to explore the impact of collectivist and individualistic values in relation to the types of social support valued.
It should also be noted that despite finding social support to be a coping strategy for parents in the majority of the reviewed studies, a study found a lack of positive association between social support and parenting stress (Nikmat et al., 2008). This finding may be attributable to the difference in the measure of social support used in their study in comparison to other studies. Whilst the Provision Social Relation (PSR; Turner et al., 1983) measure as used in a study (Nikmat et al., 2008) specifically looks at the overall perception of social support received, other quantitative studies determined the sources of social support and/or their relative importance (Moh and Magiati, 2012; Yeo and Lu, 2012; Xue et al., 2014); as did qualitative studies (Liwag, 1989; Foronda, 2000; Wahyuni, 2013; Foo et al., 2014; Santoso et al., 2015; Chong and Kua, 2016). Together, this evidence might suggest that while social support may play a role in attenuating parenting stress experienced by parents of children with ASD, this finding is specific to the sources it is drawn from, rather than acting as a general perception of feeling supported. This offered interpretation, is merely preliminary based on the findings of this systematic review and would require a thorough mixed-method study (Ilias et al., 2015) to support its accuracy.
The importance of quality social support was also seen from an informational perspective (Roffeei et al., 2015) and was seen to include support received by professionals. Particularly, lower perceived collaboration with a professional was associated with greater stress (Moh and Magiati, 2012), whereas contact with professional help was found to subside the suicide ideation within a family who was isolated from their own family members and community whilst caring for their children with ASD (Rahman et al., 2012). As a cross-cultural observation, it is worth noting that the importance of support from professionals and/or policy makers has also been reported in other regions (mainly in the Western/European context; Ooi et al., 2016) in either creating a positive or negative experience for parents of children with ASD. However, in the SEA region, where support services are only beginning to phase into conception and early-development, there may be a greater challenge as to how these support services are attained and experienced. As a result, this lack of quality support services, might increase the stress experienced by parents of children with ASD, which is likely to be more evident in developing countries that are limited in assessment, diagnosis, intervention services, and government provisions (e.g., Ting and Chuah, 2010; Tait and Mundia, 2012; Ha et al., 2014).
As suggested earlier, the finding of “severity of autism symptoms” as a source of parenting stress among parents of children with ASD, is one that is supported by similar findings in a Western/European context. In a South-East Asian context, where funding policies underequip schools and mental health care providers with sufficient personnel and resources for the intervention of challenging behaviors in children with ASD (Phua, 2012; Poon, 2013; Ha et al., 2014), the “severity of autism symptoms” might be a relatively more salient challenge for parents of children with ASD in this region. Across the 28 studies reviewed in this paper, just one study (Xue et al., 2014) found parents of children with ASD to experience relatively low levels of stress, and to only experience a mild interference with their family life when their child with ASD occasionally exhibited stereotyped, aggressive behavior. A study inferred this atypical result likely to be due to the milder symptoms of ASD among the children sampled (Xue et al., 2014). Specifically, the authors claimed that because the majority of the children had a diagnosis of ASD without intellectual disabilities, comorbid medical conditions and severe aggressive behaviors, parents might have been better able to cope with their child's autism symptoms and thus, experienced lower levels of stress (Xue et al., 2014).
In regards to financial difficulty, there is a tacit assumption that this factor may be more specific to the stress experienced by fathers in comparison to mothers (e.g., Pisula, 2011). Accordingly, in this review, Liwag (1989) found financial difficulty to be a source of stress that was more relevant to fathers in comparison to mothers of children with ASD. This finding may presumably reflect the paternal dominance as the breadwinner of the family in an Asian context. However, given the lapse of time since this finding (30 years) and hence, the sociocultural changes and shifting gender roles since then, it is uncertain if such gender differences might still exist. Moreover, the variability in design across the studies in this review makes it difficult to determine if there are indeed gender differences in respect to this factor. For example, most studies that revealed financial difficulty to be a contributing factor of parenting stress, sampled only mothers and thus, made it impossible to determine gender differences between fathers and mothers (Foronda, 2000; Yeo and Lu, 2012; Athari et al., 2013; Wahyuni, 2013). Similarly, other studies, which also found financial difficulty to positively associate with parenting stress, analyzed fathers and mothers as a dyad, and did not look for gender differences (Tait and Mundia, 2012; Vetrayan et al., 2013).
In further regards to gender differences in parenting stress among parents of children with ASD, this systematic review was able to identify some possible trends that may be specific to mothers and fathers respectively. For example, in an early study (Liwag, 1989), mothers were found to express stress in respect to the symptoms and disabilities associated with autism itself and worries about if they were not alive to care for the child; whereas, fathers emphasized fears that the child will never be “normal” and anxiety that the child will always be dependent and that the family may not be able to meet the child's needs (Liwag, 1989). In a more recent study, Resurreccion (2013) found mothers to highlight the importance of “parental involvement” and caregiver responsibilities in her child's development, whereby half of the mothers sampled in the study were found to resign from their work to become full-time mothers in assisting their child at home (p. 104); as did some of the mothers in the study by Foronda (2000). On the other hand, fathers were found to bear the responsibility of meeting the educational, health, and financial needs of the child as well as of the family (e.g., Liwag, 1989; Resurreccion, 2013). Together, these findings initially suggest that whilst a nurturing/emotional theme possibly underlies the factors that affect the stress experienced by mothers, fathers may be more likely to respond to stress based on their role as a provider in the family.
In parallel to this, findings from quantitative studies (Nikmat et al., 2008; Rejani and Ting, 2015) also provide support to the notion of possible gender differences in how parents of children with ASD experience stress. Particularly in the study, mothers' higher rates of psychological distress (i.e., stress, anxiety, and depression) were found despite an absence of gender differences in level of parenting stress (Nikmat et al., 2008). Here, it is important to note that whilst “stress” is a sub-component of psychological distress, it is compounded with other variables such as depression and anxiety in the conceptualization of psychological distress. As such, this finding (Nikmat et al., 2008) further corroborates the idea that whilst both mothers and fathers of children with ASD experience parenting stress, there may be an “emotion-focused” theme that underlies more strongly maternal than paternal stress. However, this observation is limited to the small number of studies that compared mothers and fathers and the comparatively fewer number of fathers who were recruited as participants. Therefore, further research in respect to these observations are needed to provide better insight and understanding of how parenting stress is differentially experienced by mothers and fathers in the SEA region, and thus, how intervention methods can be tailored to meet these differences.
Additionally, several studies (Rahman et al., 2012; Ha et al., 2014; Ilias et al., 2016) have found cultural beliefs (e.g., karma, parental sins, curses) to influence how society perceives the diagnosis of ASD, which is less commonly found in studies conducted in a Western context. Parents who are persuaded by such beliefs may adopt an external locus of control, such that they feel helpless and adopt maladaptive methods (e.g., substance abuse) to cope with the stress experienced as found in the study by Rahman et al. (2012). However, as observed through the current systematic review, a greater number of studies (Liwag, 1989; Foronda, 2000; Wahyuni, 2013; Xue et al., 2014; Quilendrino et al., 2015; Siah and Tan, 2015, 2016; Chong and Kua, 2016; Ilias et al., 2016) found parents to adopt a positive perception and understanding toward ASD (e.g., adaptability, emotional acceptance, positive belief, sense of coherence) and hence, effectively cope with the obstacles of raising a child with ASD. It is therefore plausible, that the South-East Asian society is beginning to move away from cultural beliefs of parental sins, karma and/or curses in the etiological understanding of the ASD diagnosis.
Two other factors (i.e., parents' anxiety and worries about child's future, and religious belief) were also found to be associated with parenting stress among parents of children with ASD. In regards to the parents' anxiety and worries about the child's future, this factor was related to the lack of resources and support services available in the region to manage the ASD symptomologies and associated comorbidities (Neik et al., 2014). This finding suggested that parents in the SEA region face an imperative need for more resources and support services. Despite the inconsistency in the presence or absence of both these factors across the reviewed studies, these factors have also been found elsewhere (e.g., Ooi et al., 2016). However, in this paper, “religious belief” stood out as a culturally related factor as it was comparatively more salient among the reviewed studies (i.e., in the SEA region) than in studies conducted in a Western/European context (e.g., Hayes and Watson, 2013; Ooi et al., 2016). However, even in other contexts, there is evidence suggesting that the role of religion may serve as a positive source of support and aid in the initial acceptance and accommodating phase of adjustment (e.g., Tarakeshwar and Pargament, 2001; Gupta and Singhal, 2004; Benson, 2010; Willis et al., 2016).
Furthermore, although the age of a child with ASD is a variable that has typically been found to affect parenting stress among parents of children with ASD in a Western context (e.g., Duarte et al., 2005; Tehee et al., 2009; Rivard et al., 2014), it was not highlighted across the studies in this review except for one study (Yeo and Lu, 2012), which found parenting stress (and its relationship to psychological distress) to differ between mothers of preschool and elementary children with ASD in Malaysia and China. The study also investigated the age of a child with ASD as a variable, though not in respect to parenting stress (Vetrayan et al., 2013). Instead, authors found no correlation between the age of the child with parents' level of hopelessness (Vetrayan et al., 2013). The scarcity in report of this factor in this review may not be due to the lack of its implications in parenting stress. Rather, it may more accurately be attributed to the aims and designs of the studies in this review that were more interested in the analyses of other variables in relation to parenting stress. Or possibly, age was measured and analyzed but was not included in a particular study due to its non-significant findings and/or space constraints in the publication of the research.
On the whole, this systemic review is limited such that is it restricted to the findings of the studies reviewed in this article. Notwithstanding a thorough search of the literature review in multiple databases, only 28 studies related to parenting stress among parents of children with ASD in the SEA region was yielded. Whilst there is a possibility that selection bias occurred, this is less likely to be case as the authors were cautious to include studies that investigated other variables (e.g., hopelessness, parental satisfaction, quality of life) that might also provide a better understanding of the parenting stress experienced by parents of children with ASD. Hence, the limited number of studies that met the inclusion criteria despite this precautionary step might also point to the lack of research conducted in the SEA region in regards to parenting stress and resilience among parents of children with ASD.
At face value, it is noticeable that low-income countries and those with lower ratings in the Human Developmental Index (United Nations Development Programme, 2013) in the SEA region were underrepresented in this systematic review; specifically, Cambodia, East Timor, Laos, and Myanmar. It is thus possible that the findings are biased toward countries in the region with higher ratings in the Human Developmental Index. Accordingly, this necessitates the advancement and expansion of the research area on ASD in this region, especially in regards to parenting stress and resilience. It should be pointed out, that in the SEA region, where native, traditional languages (e.g., Burmese, Chinese, Cambodian, Indonesian, Lao, Malay, Tagalog, Thai, and Vietnamese) are still spoken among the people, research articles published in these languages and in relation to parenting stress could illuminate on factors that may have been overlooked in the English-only, published articles included in this review. Nevertheless, very few articles were identified in native languages, although initial attempts were made to locate them as well. The English-only search strategy could have introduced bias leading articles published in local languages to be overlooked. Future reviews are recommended to include multi-languages in the search process.
Secondly, the overrepresentation of mothers/ underrepresentation of fathers in this paper might lead to a gender bias in the reported findings. The large difference in the number of mothers and fathers sampled across studies in this review paper may reflect the easier nature to recruit mothers in comparison to fathers as they, in general, remain to be the primary caregiver in an Asian context (Phetrasuwan and Shandor Miles, 2009; Rejani and Ting, 2015; Siah and Tan, 2015). On the other hand, this could also be attributed to the sampling methods that aim to recruit only one parent of a child with ASD (usually the mother) rather than both parents. As elaborated above, this makes it difficult to thoroughly determine how parenting stress is experienced differently for mothers and fathers. This overrepresentation of mothers has also been a commonly observed bias in Western samples (e.g., Bitsika et al., 2013; Braunstein et al., 2013; Hayes and Watson, 2013; Ooi et al., 2016).
Moreover, majority of the studies in this review did not also report the age at which the children were diagnosed with ASD. Whilst the children of some parents would have received an earlier diagnosis, other children might have only just been diagnosed relative to the time at which the respective study was conducted. This difference might lead to parents of children with an earlier diagnosis, to over time, be more equipped and resilient in caring for their child with ASD in comparison to parents who are only beginning to seek for clarity and support. As such, if this factor was instead maintained as a control variable, it would have allowed for a clearer and more accurate examination of parenting stress among parents of children with ASD.
Further limiting the conclusions made in this review, the common use of purposeful and convenience sampling may have led to a biased sample of more resilient parents who are more likely to volunteer and participate (e.g., Tait and Mundia, 2012; Wisessathorn et al., 2013; Xue et al., 2014; Chong and Kua, 2016; Ilias et al., 2016). Even, in one article (Foronda, 2000), the author was transparent reporting she included herself as one of the 16 participants. No other conflicts of interest were specifically reported, although it is possible they may have been present in some studies. Other than that, the sampling could have also led to a biased sample of more parents from middle to higher socioeconomic backgrounds who have access to intervention services (e.g., Liwag, 1989; Sian and Tan, 2012; Ha et al., 2014; Xue et al., 2014; Santoso et al., 2015; Siah and Tan, 2016). Additionally, studies included in the review were cross-sectional and therefore inferred an association rather than a causal relationship. Longitudinal investigations are recommended for future research.
Besides that, variation in designs, factors analyzed, methods, and outcome measures, made direct comparison between the findings of the studies, problematic. As illustrated in Supplementary Table 1, significant variation was observed for the outcome measures of parenting stress, and conceptual ambiguity of the construct remains an area for future investigation to tackle. Furthermore, the use of an active control group in only one of the reviewed studies (Lai et al., 2015) elucidates the need for more experimental/quasi-experimental design components in the research area of ASD in the SEA region. The 28 studies had a reasonable balance between quantitative and qualitative studies (14 quantitative, 11 qualitative, and three mixed-method) that were found to corroborate the findings among them. Therefore, as a seminal article (at least, to our knowledge) that has reviewed articles in the SEA region in regards to parenting stress among parents of children with ASD, this paper provides a helpful and informative starting point for future researchers, parents, as well as professionals in the field.
To conclude, this systematic review observed four main factors to be associated with parenting stress among parents of children with ASD in the SEA region: social support, severity of autism symptoms, financial difficulty and parents' perception and understanding toward autism. Other factors that were also found to be associated with parenting stress in this sample (though, to a lesser extent) included, parents' anxiety and worries about their child's future, and religious belief. Whilst several of these factors may have similarly been reported in a Western context, findings from the current systematic review lean to suggest that the greater advanced development and implementation of policy, economical and professional support services in Western countries than in South-East Asian countries might impart cultural differences in regards to how these factors are manifested. Therefore, further research is imperative to more clearly identify cultural specificities that differentiate how parenting stress and its associated factors are uniquely experienced across countries in the SEA region in comparison to Western countries. Additionally, as majority of the studies identified in this review were not published in high-impact journals with large readerships, funding and research bodies are recommended to increasingly support the methodological rigor in the design, conduct, and publication of studies in the SEA region, especially in the lower-income countries.