Introduction

The prevalence of autism spectrum disorder (ASD), a neurodevelopmental disorder, has increased worldwide. In the United States, approximately 1 in 44 persons are now diagnosed with ASD (Maenner et al., 2021), and the prevalence of ASD is greater in boys than girls (Christensen et al., 2019; Tan et al., 2021). Compared with parents of children with other intellectual disorders, parents of children with ASD experience higher levels of stress (Hou et al., 2018; Leonardi et al., 2021), more depression and anxiety (Hou et al., 2018; Kütük et al., 2021; Williams et al., 2021), increased risk of poorer quality of life (Celik et al., 2021), and higher incidence of fatigue (Giallo et al., 2013). Parenting children with mild to moderate levels of ASD involves the greatest degree of parental stress (Huang et al., 2014), which is associated with ineffective coping strategies (Ni'matuzahroh et al., 2022) and both parenting stress and adaptive coping related to parents’ quality of life (Ten Hoopen et al., 2022).

Children with ASD experience impairments in their social interactions, language communication, and stereotypical patterns of behavior (American Psychiatric Association, 2013). These impairments have been associated with parenting stress (Baixauli et al., 2019; Samsell et al., 2022). The degree of severity of ASD is not only a source of parenting stress but also strongly associated with behavior problems in children with this condition (Lanyi et al., 2022; Romero-González et al., 2021). The chronic pressure of raising a child with intellectual or developmental disorders has been shown to impair the physical and mental health of parents (Peters-Scheffer et al., 2012) and disrupt family functioning (Hickey et al., 2022). Therefore, understanding how parents cope with the stress of parenting a child with ASD is essential to providing appropriate care that supports their psychological well-being.

Folkman and Lazarus (1985) view stress as the interaction between individuals and their environment and coping as “the cognitive and behavioral efforts made to master, tolerate, or reduce external and internal demands and conflicts.” Two types of coping strategies have been described: problem-focused and emotion-focused (Lazarus & Folkman, 1984). The purpose of problem-focused coping is to solve problems, whereas that of emotion-focused coping is to help regulate emotions. Parents of children with disabilities also develop coping strategies to counteract the stresses associated with raising a child with special needs (Shilubane & Mazibuko, 2020; Wong et al., 2020). Lai and Oei (2014) suggested that the coping strategies used by parents of children with ASD are influenced by the demographic characteristics and psychological predispositions of the parents as well as by their child’s characteristics and environmental conditions.

ASD has increasingly been recognized in Taiwan as a disability, which likely accounts for the increase in the reported prevalence of children and adolescents with ASD in this country (Chien et al., 2011). Although Taiwan enacted the Disabled Welfare Law in 1980, it was not until 1990 that children with ASD were officially recognized under this law. In 1997, the Physically and Mentally Disabled Citizens Protection Act of Taiwan further required health professionals to identify children under 6 years old at high risk of ASD (Physically and Mentally Disabled Citizens Protection Act, 1997). Disability certification and government support are provided to those with ASD following diagnosis by a government-accredited psychiatrist. This delay in recognition of ASD explains the lack of studies in the literature on the coping strategies used by parents of children with ASD in Taiwan.

Cultural factors influence parenting stress (Giannotti et al., 2021). Because the Chinese concept of “Guan” makes parents fully responsible for their child’s behavior, parents of children with ASD in ethnic Chinese cultures are expected to bring their children’s disruptive behaviors under effective control, which can become a major source of parental stress. Although many studies have been conducted on the coping strategies of parents of children with disabilities, little research has specifically explored parenting children with ASD (Hastings et al., 2005), especially in Asian countries (Lai & Oei, 2014; Lin et al., 2008; Yeo & Lu, 2012).

Although the prevalence rate of ASD in East Asian countries is increasing, how parents in this region of the world cope with parental stress has not been fully investigated. Therefore, the purpose of this study was to explore the coping strategies employed by parents in Taiwan to ameliorate the stressors of parenting a child with ASD. We hope the findings will better enable clinical professionals to provide parents in Taiwan with effective coping strategies that reduce parental stress, improve parent–child relationships, and improve quality of life for both the parents and their children with ASD.

Methods Participants

Parents of children with ASD were recruited using purposive sampling. The inclusion criteria were parents who have a child formally diagnosed with ASD currently receiving consulting or other services at only one hospital and who were willing to sign informed consent to participate. Otherwise, qualified parents were excluded if their child was affected by intellectual or language impairments. The institutional review board of the research committee of the study hospital provided approval (103-6377B) prior to beginning the study. Parents were invited to participate in this research by their child’s physician. Those who agreed to participate were contacted by a researcher who informed them of the purpose of the study. Parents then signed a written informed consent form, which guaranteed participant anonymity and confidentiality and the right to withdraw from the study at any time for any reason.

Study Design

A thematic design and face-to-face interviews were used in this study to elucidate the coping experiences of the participants with regard to the stress of parenting a child with ASD.

Data Collection

Data were collected using face-to-face, semistructured interviews with open-ended questions between April 2015 and May 2016. The interviews were conducted at a time convenient to each participant in the same hospital where they and their children were receiving consulting services. This helped ensure a quiet and familiar environment in which the participants could feel at ease to talk. The interviews were audio-recorded with the participants’ consent, and brief notes were taken during the interviews for reference during data analysis.

Each interview began with the question, “Could you please describe a typical day at home with your family, including any situations that are stressful for you?” The second question was, “When were you first aware your child was different from other children?” Additional questions followed that were designed to explore the parents’ coping strategies. These included “What situations were particularly stressful?”; “What steps did you take then?”; and “Can you tell me more about how you felt when this happened?” Questions were asked to gain an in-depth understanding of the stressful situations encountered by participants. The interviewer also asked the parents about their child’s development, as well as their behavior at home and school. At the end of the interview, all of the participants were asked if there was anything they would like to add. Although all of the questions posed related specifically to parenting a child with ASD, the parents were encouraged to share any information they felt was relevant. Most parents were interviewed once, with second interviews conducted only if further clarification of responses was needed. Data saturation occurred with the 13th parent, when no new themes emerged (Strauss & Corbin, 1998). An interview with a 14th participant further confirmed data saturation had been achieved, after which no additional participants were recruited.

Data Analysis

Audio-recorded interviews were transcribed verbatim and analyzed using an inductive approach. The themes identified during the analysis were linked to the data and bore little relation to the specific questions that the participants were asked. The transcribed interview data were analyzed using the thematic analysis approach of Braun and Clarke (2006), which includes the following steps: (a) become familiar with the data, which involves reading and rereading the data to formulate initial ideas; (b) generate initial codes, which requires collating and coding relevant data; (c) search for themes, which involves gathering the coded data and identifying the important elements; (d) review the themes, which requires determining whether the themes align with the text and generate a coherent pattern; (e) define and name the themes, which involves refining each theme to tell an overall story; and (f) conduct the final analysis, which involves selecting some vivid examples to represent the themes and illustrate a story about the data.

Rigor

The authors employed Krefting’s (1991) strategies to enhance data trustworthiness in terms of credibility, transferability, dependability, and confirmability. To increase data credibility, the interviewer spent time with the participants before beginning each interview, which allowed the participants to become familiar with the interviewer and made it easier for them to share information of a more sensitive nature. In addition, the research team collaborated on data collection and analysis to decrease the potential influence of bias related to any one interviewer’s perspective. Furthermore, the researchers discussed the study process and findings with colleagues with experience in qualitative methods. These colleagues additionally served as readers and experts and assisted the research team to verify the identified themes and subthemes and to identify any inconsistencies. Transferability was assessed using the criteria proposed by Guba (1981). A teamwork approach was employed to increase dependability and consistency, with team members discussing the coding and identifying the themes collaboratively. Finally, data confirmability was enhanced by maintaining an audit trail of details related to the data collection and analysis processes. Employing a teamwork approach helped increase awareness of and control for the influence of each researcher’s personal perspectives and biases. In addition, the results of this study offer documented examples from the participants in support of the researchers’ analyses and interpretations of findings.

Results

Fourteen parents (13 mothers and 1 father) participated in this study. The mean age of the participants was 41.78 years (range: 34–52 years), each participant had one child diagnosed with ASD, and most (71%) were married. The mean age of the children was 12.78 years (range: 6–19 years).

Analysis of the interview data showed that the coping strategies employed by the parents of children with ASD could be described by five themes: communication, support, management, acceptance, and adaptation. Following Lazarus and Folkman (1984), we categorized the three themes of communication, support, and management as problem-focused coping strategies and the two themes of acceptance and adaptation as emotion-focused strategies. Although specific themes are either problem-focused or emotion-focused, the themes in each category are not mutually exclusive. For example, communication skills are required to provide support and management, and acceptance is required for adaptation.

In general, problem-focused coping strategies were widely used among participants to control or alter the maladaptive behaviors of their children to reduce parenting stress. Emotion-focused strategies were reported by the participants as being employed relatively more frequently on older children. Descriptions of the themes and illustrations of the subthemes are presented in Table 1.

Table 1. - Themes, Definitions, and Illustrations of Subthemes for Parents of Children With Autism Spectrum Disorders Theme Description Subtheme Communication Parents communicate with their child to modify their child’s behavior using indirect or direct means. 1. Indirect communication: making suggestions to persuade or encourage their child.
2. Direct communication: intervening to alter their child’s behavior or making demands. Support Parents employ outside resources to develop strategies to resolve their children’s problems and relieve parenting stress. 1. Self-support: gaining more knowledge about ASD through the internet or books.
2. Professional support: employing a therapist or counselor; obtaining medical/pharmacological assistance from a physician.
3. Family support: identifying a person to whom the child will listen. Management Parents actively use different strategies to manage their children’s stress, and parents take control of the situation by reminding, helping, and finding an outside helper. 1. Reminding: observing their children and prompting them to remember how to behave or what they need.
2. Helping: explaining things that happen to the children or being actively involved in the children’s life—either personally or finding an outside helper. Acceptance Parents learn to accept their child’s unique needs, which are both physical and psychological. Acceptance is expressed by providing for their child to satisfy physical/emotional needs. 1. Physical needs: parents provided monetary or physical items to satisfy the physical/material needs of their child.
2. Psychological needs: parents recognized providing respect or emotional comfort was needed to satisfy the psychological needs of their child. Adaptation Adaptation is an ongoing process. As parents endeavor to adapt to the characteristics of their child with ASD, their thoughts and perspectives about parenting change continually. 1. Thoughts: parents’ reflections on parenting a child with ASD changed continually (perceptions of parenting).
2. Perspectives: perspectives about parental behavior and expectations for their child’s future were revised over time.

Note. ASD = autism spectrum disorder.

Theme 1: Communication

The parents reported using communication as a problem-solving strategy to help their child manage maladaptive behaviors and stress. Indirect verbal communication was employed to persuade or negotiate with their child to change their behavior. Direct verbal communication was employed to express exactly what was expected.

Indirect communication

The parents persuaded their child to change their behavior by providing a rationale for why a behavior was important. This involved making suggestions and providing explanations to help their child understand why certain behaviors were expected. Karen’s mother said, “I try to persuade her by telling her ‘You are part of our family. Therefore, you have a responsibility to keep your room clean.’” David’s mother described the importance of trying different explanation approaches to help him understand what was important, saying “To help him understand and to help him feel better, I need to adopt many different approaches when I communicate with him.”

Direct communication

The parents communicated directly using commands rather than suggestions to provide their child with specific instructions on how to change or cease a behavior. For example, Neil’s mother said, “His sensory level is so high that sometimes he could not put up with noise. He would disturb other people. I told him, ‘You must stop this behavior immediately.’” Andy’s mother found that threatening to withhold something was effective in stopping inappropriate behavior, saying, “I warned him that I would take his summer vacation away, and it worked.”

Theme 2: Support

The parents improved their knowledge about ASD to help them cope with parenting. This included both using information resources as self-support and seeking professional and family support. Finding and using support helped the parents develop strategies to resolve their children’s problems and relieve parenting-related stress.

Self-support

The parents sought to improve their knowledge of ASD by searching the Internet and reading books, which increased their understanding of their child’s behavior and helped them modify how they interacted with their children. David’s mother said, “I kept thinking why does he behave that way? For that reason, I Googled information to verify things, which cleared things up [for me].” Andy’s mother also received support from books on parenting a child with ASD and learned “making threats is not a good way to parent.”

Professional support

Professional resources aided all of the participants in improving their ability to cope with the symptoms and behavioral issues related to ASD. Parents employed therapists or counselors or received medical/pharmacological assistance from a physician. Fred’s mother reported that finding a compatible counselor for her child reduced her stress, saying:

We are not professional enough (to deal with his questions)…not like a doctor or psychotherapist. We were afraid to give him the wrong answers because my child only accepts the first answer he gets. If we change the answer, he will not accept it. Therefore, we found a counselor who really helped him with his questions.

Family support

Some of the parents were able to identify a family member who could help care for their child to reduce their parental caregiving stress. Gary’s father was able to ask his sister to help out over Gary’s summer vacation away from school. Gary’s father said, “His aunt lived with him during the summer and often comforted him with food or gave him lots of space. Therefore, I did not have trouble during summer.”

Theme 3: Management

Coping with the challenges of parenting a child with ASD requires being actively involved in managing that child’s behaviors. Using management strategies that incorporate reminding and helping components allowed the parents in this study to be better in control of the situation and thus experience less stress.

Reminding

Similar to indirect communication, providing regular verbal reminders to their child about what was expected or anticipated helped increase that child’s awareness of the need to alter their behavior, which helped parents avoid stressful situations. Henry’s mother said, “His habit of losing things can contribute to his misbehavior, and there is nothing I can do to stop him. Therefore, I often remind him to think twice if he is going to take something along with him.”

Helping

Some of the parents preferred to be active helpers in terms of attempting to solve their child’s problems and thus reduce their own stress. This took the form of environmental adjustments. Ian’s mother said, “…he likes a certain color highlighter for certain subjects, and he feels anxious if these rules change. So, I became his assistant and now make sure things fall properly into place.” Another parent made the decision to move her son to a school she thought would be more understanding of her son’s rigid behaviors. Eddie’s mother explained:

…the schoolteacher would insist he eat everything on his plate. He ate it all and spat it all out. Punishment became inevitable at school. Then I transferred him to another school because my child resisted going to the previous one.

Theme 4: Acceptance

The parents learned to accept their child’s unique needs, which were both physical and psychological. Providing a means for their child to satisfy these needs reduced anxiety in the child as well as the parents.

Physical needs

Accepting and providing for physical needs such as preferred foods and favorite games helped the parents reduce stressful situations. Eddie’s mother said, “My child was picky about food, but the school teacher forced him to eat everything. In contrast, (at home) we respect his eating habits and let him be himself.”

Psychological needs

The parents recognized and accepted that fulfilling psychological needs could reduce anxiety and problematic behaviors. Karen’s mother gave one example: “I didn’t understand her inappropriate behavior at first (stealing)…I offered her as much money as she wanted. Later, I realized there were probably psychological needs related to that behavior… (Now), there is no motivation for stealing.”

Theme 5: Adaptation

Adaptation was reported as an ongoing process. The reflective thoughts and perspectives of the parents regarding parenting evolved as they adapted to the characteristics of their child.

Thoughts

The parents applied reflective thinking to cope with their child’s behaviors, especially when they perceived situations as being out of control. Johnny’s mother’s reflective thinking was among the strongest of all participants:

He blames me for many things…. Sometimes, I can’t put up with his behavior…. One day, I told my husband that I wished my child would die in a sudden car accident. Having that kind of thought occasionally is scary.

Perspectives

The parents held different perspectives related to parenting and expectations regarding their child’s future. Moreover, these perspectives tended to evolve over time as the situation and related stressors changed. Leo’s mother described her change in perspective and reduced anxiety, saying:

My emotions used to involve feeling sad, anxious, and stressed. I didn’t feel his conduct [in school] was good enough. Now, he is in third grade, and I am more optimistic…[I] made the transition and now feel that no news from the teachers is good news.

The perspectives of the parents also transitioned from feeling stressed that their child might not be accepted by others to hopeful that they would someday be viewed as “normal” in a diverse society. David’s mother said, “People with ASD…should be tolerated. I hope everyone respects each other’s differences, and I believe that is the way to live.”

Discussion

In this study, the parents of children with ASD used both problem-focused coping strategies (communication, support, and management) and emotion-focused strategies (acceptance and adaptation) to cope with parenting stress. They often coped by communicating with their child and managing their difficulties directly as a means of changing their child’s behavior. Rigid thoughts as well as difficulties in handling change and adjusting to new environments encouraged the participants to adopt emotion-focused coping strategies to alleviate difficult situations.

The parents in this study were able to persuade their children to overcome rigidity in their thoughts through repeated, indirect persuasion delivered with patience. Cognitive rehearsal has been shown to be an effective strategy for helping children with ASD cope with stress (Chin et al., 2017), and the parents in this study encouraged their children to practice behavioral changes whenever the opportunity arose to ingrain positive changes in behavior. Moreover, the parents communicated in a more direct manner when their children exhibited disruptive behavior, commanding them to effect a desired change in their behavior. Parental management of a child’s behavior using both indirect and direct communication has been shown to be a positive coping strategy in the Chinese cultural context (Peng et al., 2017).

The theme of support involved self-support, professional support, and family support. A recent study reported parenting stress in parents with children with ASD to be negatively correlated with level of social support (Efstratopoulou et al., 2022). The results of this study confirm the findings of prior studies that using multiple kinds of support to alleviate coping stress improves parents’ psychological well-being (Lindsey & Barry, 2018). Tangible professional support from social services is considered instrumental support, which may serve as a protective factor against stress, whereas emotional support, which involves care and concern about an individual from close family and friends, promotes positive thinking and increases perceived well-being (Morelli et al., 2015). However, professional support may be inadequate in Taiwan due to insufficient medical and social resources. Families, the third source of support for the participants, is an important aspect of ethnically Chinese societies (Yau et al., 2000). The respite care provided by Gary’s aunt to Gary’s father helped relieve parenting stress and provided comfort for Gary when he encountered troubles at school. Based on a prior study of parenting stress and resilience in Southeast Asia, receiving support from extended family members or the community is typical in Asian cultures (Ilias et al., 2018). Because adequate support affects the ability of parents to cope successfully with parenting stress, a thorough evaluation of support systems and resources available for parents of children with ASD should be conducted.

Emotion-focused coping strategies were used more frequently by the participants with older children. The process of acceptance and adaptation increases parental understanding of the difficulties faced by their children, allowing them to better accept the behavioral challenges of ASD and, subsequently, adjust their perspective on and approach to parenting. Although the concept of “Guan” increases parenting stress, other Chinese cultural concepts such as meditation and mindfulness offer the potential to improve coping strategies by increasing one’s ability to adjust and manage emotions (He et al., 2016).

Although problem-focused and emotion-focused coping strategies are both equally important to successful adaptation (Lazarus & Folkman, 1984), coping strategies differ among cultures. A cross-cultural study of Italian and Japanese parents found that Japanese parents reported higher parenting stress and less social engagement than their Italian counterparts (Giannotti et al., 2021). The findings of a previous study demonstrated parents who used emotion-focused coping to be more likely to experience poorer mental health and parents who employed problem-focused coping more likely to achieve better parental adjustment (Abbeduto et al., 2004). Previous studies have found that Western parents employ more emotion-focused coping than Asian parents (Lin et al., 2008; Luong et al., 2009). The findings of this studies support this, as nearly all of the participants favored problem-focused coping strategies. The lower emphasis on emotion-focused coping identified in Taiwanese parents of children with ASD may be attributable to factors embedded in Asian cultures, which influence not only the treatment and training of parents but also ASD-related adaptation (La Roche et al., 2018). Further cross-cultural studies into differing approaches to stress and coping may provide more insights critical to developing programs to assist parents to adapting to the unique challenges of parenting a child with ASD.

Conclusions and Implications for Practice

The findings of this study are a source of background knowledge that may be used by clinical professionals to better evaluate and classify the different coping methods employed by parents of children with ASD. Clinical professionals may also suggest different strategies for parents based on family and culture-specific considerations and promote the development of new interventions for parenting. In this study, most of the participants favored problem-focused coping. Thus, emotion-focused coping may be suggested as an alternate coping mechanism. Cultural factors influence parental coping strategies and should be evaluated in clinical practice.

Acknowledgment

This study was supported by a Chang Gung Memorial Hospital grant (CMRPF1F0021).

Author Contributions

Study conception and design: KYC, HLC

Data collection: KYC

Data analysis and interpretation: KYC, WCC

Drafting of the article: KYC, WCC

Critical revision of the article: KYC, WCC

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