The resilience of parents who have children with autism spectrum disorder in China: a social culture perspective

Abstract

Background

Parenting children with autism spectrum disorder (ASD) continues to be challenging worldwide, especially in the Chinese context where there lacks support for parents.

Method

Five parents of children with ASD of high level of resilience in China were interviewed about their experiences of raising children with ASD and influencing factors of developing resilience.

Results

Findings highlighted the process of developing resilience shaping from the interaction between different social system, including introspect and self-cultivation in micro system, acceptance of ASD, playing various roles for their children, and expanded social network in the interactions between micro and mezzo systems and accept the worst results in the interactions between micro and macro systems. The characteristics of resilience for Chinese parents of children with ASD were that parents built positive relationships with themselves and outsides though active interaction and changed their social environment as an outcome.

Conclusion

The results of this study may reveal the process and characteristics of resilience for Chinese parents having children with ASD, which can be a starting point for other parents to understand and learn from them. Besides, it provides insight for service providers into paying attention to the whole experience of parents and help them to expand the relative network to support them.

Introduction

The prevalence of autism spectrum disorder (ASD) is a topic currently receiving a great deal of attention, since evidence indicates an exponential rise in ASD over the last decade (Baio et al. 2014, Chasson et al. 2007). In China, the estimated prevalence of ASD is increasing to more than 1% of the total population (Clark et al. 2019). The individual development of children with ASD is embedded in a series of interacting environmental systems. The most direct system for the development of children with ASD is the micro-system, and the family most closely related and largest micro-system for children with ASD (Bronfenbrenner 1986, Liu and Meng 2009, Rosa and Tudge 2013). This group of children and families have important service needs. The mental health statue of parents in raising and intervening with their children with ASD has long been accepted as helpful (McConachie and Diggle 2007). Parental stress not only directly affects the well-being of children with ASD, but also reduces the effectiveness of early intervention (Lecavalier et al. 2006, Osborne et al. 2008). Unless parents can cope with stress and mental health problems in raising children successfully, the effectiveness of behavioral therapy for children with ASD will be greatly increased (Osborne et al. 2008). Otherwise, their behavioral problems will become more serious (McGrath et al. 2013). Thus, it is essential to identify and support protective factors that mitigate the negative effects of having a child with ASD on the caregiver’s ability to parent (Zand et al. 2013).

Impact of raising children with ASD on parents

Caring for children with ASD is extremely challenging because of multiple impairments and comorbidities, unclear etiology, varied presentation, and a plethora of treatments with no consensus on optimal treatment or criteria for evidence-based efficacy (Lord and Bishop 2010, Nelson 2015, Rogers and Vismara 2008). Therefore, research studies on parents of children with ASD have long focused on the psychological pressure on them (e.g. Hayes and Watson 2013, Iadarola et al. 2019, Weitlauf et al. 2014) including higher level of anxiety, stress and depression and lower level of mental health than parents of typically developing children (Al-Farsi et al. 2016, Chen 2007, Totsika et al. 2011). Moreover, in Mainland China, the social service system of children with ASD, including diagnosis, medical treatment, rehabilitation training, life security etc. is not perfect. The absence of a social security system makes parents of children with ASD needing to bear the impact of raising children with ASD alone (Shenzhen Autism Research Association 2013).

Although many studies have proved that parents of children with ASD have high levels of chronic stress (e.g. Dykens and Lambert 2013, Fairthorne et al. 2015, Giallo et al. 2013, Lee and Chiang 2018, Omar et al. 2016), more and more researchers have recently begun to pay attention to the positive psychological traits of parents of children with ASD in their plight. Positive psychology gives another perspective focusing on courage, hope, perseverance, optimism and other psychological traits which can effectively resist mental illness. The study of human power and virtue can help people develop themselves continuously, which is of more practical significance (Li et al. 2003). Under the background of vigorous development of positive psychology, more attention is paid on parental resilience—the dynamic process of being able to parent effectively in the face of having a child with ASD (e.g. Bayat 2007, Ekas et al. 2015).

Resilience of parents of children with ASD

Resilience can improve parents’ problem-solving ability and develop their ability to actively and positively cope with stress (Berliner and Benard 1995). Parents with higher resilience have lower levels of depression and higher self-efficacy in upbringing (Pastor-Cerezuela et al. 2016), which can help parents resist anxiety and depression caused by raising children with ASD and has an important stress buffer effect (Bitsika et al. 2013). The concept of resilience has been evolved across diverse social science disciplines over the past decades (Waller 2001). At the beginning, resilience was commonly thought of as inborn and viewed in terms of personality traits and ability to successfully overcome psychosocial crisis events (Rutter 1993, Werner 1982). With the rise of ecosystemic resilience, the focus is shifted from individual characteristics to interactive processes that must be understood in the context of ecology and development (Waller 2001). Resilience was thought to come from the everyday magic of ordinary, normative human resources in the minds, brains, and bodies of children, in their families and relationships, and in their communities (Masten and Ann 2001). Nowadays, the study of resilience is evolving from individualistic conceptualizations to family resilience focusing on relational resilience in the family (McCubbin and McCubbin 2005, Walsh 2003).

Resilience is a superordinate construct encompassing two distinct components: significant adversity and positive adaptation (Becvar 2012). It represents the interaction between risk factors (vulnerability) and protective resources (protection). Parents of children with ASD who have good or desirable outcomes in the face of high risk are described as being resilient. For the parents of children with ASD who have adverse symptoms, resilience can eliminate the effects of crises and reducing negative responses to crises, resulting to the positive adaptation of individuals (Gray 2002, Hall and Graff 2011, Hartley et al. 2011, Hastings and Taunt 2002, Kartini et al. 2018, King et al. 2009, Luong et al. 2009).

Resilience, like development, is said to arise from processes of interaction across multiple levels of functioning, e.g. from genes to neural systems to relationships to individual-media interaction (Masten and Obradovic 2008). Social ecological systems are useful for organizing factors that enhance the parents’ resilience since those who live in the social system and each influencing factor can be placed around parents according to the proximity of the factor in relation to the individual’s ecosystem , including the micro system, meso system and macro system. The process of developing resilience also involves the interaction between individuals and social structure (Boon et al. 2012). On one hand, as an individual of the micro system, it is the main body of interaction with other ecosystems, and the three-tier system has multiple interactive relations. On the other hand, the internal biological, psychological and social systems of the micro system are also in interaction (Zhang and Wang 2017).

Therefore examining the resilience of parents who have children with ASD, social- cultural factors are very important to consider (e.g. Daley et al. 2013, Freeth et al. 2014). The majority of studies that have investigated resilience in parents of children with ASD have been conducted in Western or European contexts (e.g. Hayes and Watson 2013, Ooi et al. 2016). Not until 2007 were research studies on the resilience of parents of children with ASD conducted in Mainland China (Chen 2007), focusing on the psychological characteristics affecting those with resilience. Since then, there has been a growing trend in terms of literature published on the resilience of parents of children with ASD in Mainland China. However, many researchers have argued that there are critical concerns on them. Firstly, there is a dearth of empirical studies on the resilience of parents of children with ASD in China, as very few of them have been based on empirical evidence (e.g. Zhou 2017). Secondly, the existing research on parents of children with ASD in China is mainly problem-oriented, focusing on parents’ psychological problems, pressures or needs, paying too much attention to the negative factors of parents and regarding parents of children with ASD as vulnerable groups in need of assistance (e.g. Chen et al. 2015), rather than analyze the positive factors, which makes it difficult to explain why some parents can achieve positive adaptation results when facing multiple pressures.

This paper attempts to address these gaps by critically examining the resilience of parents of children with ASD through case study to look at the potential, motivation and ability of them in a more appreciative way. Also, to explore the process of coping with difficulties and developing the resilience of parents who are well adapted to the specific Chinese context, so as to help parents of children with ASD more in coping with their disadvantages. Two questions were addressed in this study: (1) How do parents of children with ASD develop resilience in China? (2) What are the characteristics of the resilience of parents of children with ASD in China?

Methodology

This research adopted the method of case study, which focused on how and why things happen through the deep description and rigorous analysis of the event (Yin 2003). Participants could open up and tell a story, rather than being limited to answering specific questions. This approach allowed for deeper exploration of the topic and unexplored phenomena to the surface. “Qualitative studies help explore a phenomenon in depth…Thus, provide more comprehensive view of a topic in sociocultural context, or increase sensitivity to a human experience to enhance understanding or stimulate social action” (Powers 2005, 284). Applying case study, we could obtain rich procedural information about how parents develop resilience in raising children with ASD.

Participants

Purposive sampling was applied in this study. The criteria for selecting research subjects were: (1) Parents of children with ASD who are older than 15 years. The reason for the standard was that 15-year-old children with ASD have graduated from junior high school, compared with parents of younger children with ASD, parents of elder children with ASD who have experienced the whole process from diagnosis, early rehabilitation, entering school to considering children’s employment, which can provide the richness and integrity of the process of resilience of parents of children with ASD. (2) Parents of children with ASD who scored higher than 80 on the CD-RISC resilience scale (Connor and Davidson 2003), aiming to find the research subjects adapting well to the plight. Mean CD-RISC 25-Item Scores in General Population Samples less than 80 which were rated as a highly resilient group in China (Chen 2007). The stories of these parents moving through the adversity could be used for reference by other parents still struggling with disadvantages.

In order to find research participants that met the standards, we entered a vocational rehabilitation center for children with ASD in Beijing, which was founded by six mothers of children with ASD. Nearly 20 adolescents with ASD received rehabilitation service in that institution accompanied by their parents. To build a trusting relationship with parents, the first author volunteered for four hours twice a week in the rehabilitation center to help the organization manage the attendance of parents and children, and provide the support in class, and chatted with parents about their children and their lives at break time. One month later, after all the parents were familiar with the first author, the first author invited the parents to participate in the research by informing them of the aim of the study by getting consent and sending the printed CD-RISC resilience scale to ascertain the parents with high score on resilience. Three parents met the survey criteria, including the mothers of LL, CC and QQ, of whom the mothers of LL and QQ were the founders of the vocational rehabilitation center. In order to increase representative of cases, we invited LL’s mother to introduce more parents meeting the research criteria. The mothers of RR and BB were selected by that way and also tested by the CD-RISC resilience scale.

The information about five parents and their children are shown in Tables 1 and 2. Five parents aged between 42 and 51 and their children with ASD aged from 15 to 22. Regarding educational background, all the parents had received at least a bachelor’s degree. As for employment, all the parents quit their jobs after their children were diagnosed with autism. Specifically, the mothers of RR and CC became housewives in order to have more time to take care of their children and the three other parents set up rehabilitation institutions in order to provide rehabilitation opportunities for their children due to the lack of rehabilitation and education resources in China. Regarding family income, all the parents reported a monthly household income of more than 10 thousand RMB which is in the upper middle-income level in China according to the 2017 China national family income standards (China Bureau of Statistics 2017). As for marital status, RR’s mother was remarried, and the other parents had normal married status. Regarding family structure, RR and CC’s families were nuclear families in which mothers were mainly responsible for taking care of the children and the fathers in charge of making money. Although LL’s family was a nuclear family, LL’s mother was employed as a nurse to do housework and take the children to school and pick them up after school. In the families of BB and QQ, the grandmother lived with them and did most of the housework. Two of the five parents had two children and the older ones were diagnosed with ASD; the younger child was a typically developed child studying in primary school. All the children with ASD were male and diagnosed between the ages of 3 and 6 years. QQ and LL had moderate severe disability studying in vocational special schools after graduating from general high school. RR with moderate disability was studying in private junior high school, and BB with mild disability studied in a public general high school. CC with moderate disability graduated from vocational special high school and was unemployed.

Table 1.

Demographics for parents of children with autism.

Name	Age	Educational background	No. of children	Former work	Present job	Family income (RMB/mon)	Marital status	Family structure	Resilience score
RR’s mother	50	Master	1	Foreign company executive	Housewife	More than 10 thousand	Remarried	Nuclear family	92
BB’s mother	42	Bachelor	2	Middle school teacher	Founder of Autism Institution	More than 10 thousand	Married	Stem family	83
QQ’s mother	49	Bachelor	1	Enterprise staff	One of the founders of Autism Employment Support Center	More than 10 thousand	Married	Stem family	81
LL’s mother	44	Master	2	University teacher	Kindergarten director, one of the founders of Autism Employment Support Center	More than 10 thousand	In married	Nuclear family	80
CC’s mother	51	Master	1	University teacher	Housewife	More than 10 thousand	In married	Nuclear family	80

Table 2.

Demographics for the children with autism.

Name of child (alias)	Age	Gender	Level of disability	Educational placement	Diagnosed age
RR	15	male	Moderate	Private Junior High School	3.5
BB	18	male	Mild	Public General High School	3.5
QQ	17	male	Moderate severe	Vocational High School in Special School	3
LL	15	male	Moderate severe	Vocational Junior High School in Special School	3
CC	22	male	Moderate	Graduated from Vocational High school in Special School and was unemployed.	6

Data collection

Individual interviews

Interviews were the primary data source for our study. The first author conducted three formal interviews in Chinese with the five parents, lasting 1 to 2 h each time. The location of the interviews was a coffee shop, the interviewee’s office, or at their homes. The first interview focused on the parents’ experience of raising children with ASD with open-ended questions. The second interview focused on the difficulties faced by parents of children with ASD and how to mobilize resources to cope with the dilemma in the development of resilience. Semi-structured interview protocols with 15 questions were used, including what difficulties had been encountered, support resources available, how to obtain these support resources, and how the risk factors and protective factors affected their personal life. The third interview was mainly to check the gaps after the coding analysis.

Subject collection

Parents blogs, personal diaries, network coverage, precious photos and so on could help participants recall their past experiences and also provided a lot of information for this research. Specifically, QQ’s mother had been blogging since her child was diagnosed with ASD. The number of her blog articles has exceeded 1,500, documenting the growth process of QQ, as well as the parents’ own life story and mental journey and the process of starting an employment support center. These articles provided detailed information about the development of resilience of QQ’s mother in the process of raising children with ASD. As for the mothers of RR and CC, a lot of videos provided real information about how they educate their children and children growth. BB’s mother and LL’s mother did not provide subject information initiatively while news reports about the parenting and advocating stories of the mothers of LL and BB provided indirect subject materials for this research.

Data analysis

All interviews were transcribed by the researchers and all transcripts were anonymized to ensure confidentiality in Chinese. 90,218 words in Chinese of the transcripts were produced from the semi-structured individual interviews. We used the Chinese version of NVIVO 8.0 to analyze the research data. The flow of analysis used to examine the qualitative data occurred in three steps (Miles and Huberman 1994): (a) transcribing interview tapes; (b) we used open coding and the constant comparison method to analyze the transcripts from the individualized interviews and blog posts to generate categories, sub-categories and codes, and to interpret patterns and themes; and (c) establishing trustworthiness (Lincoln and Guba 1985). Specifically, after repeatedly reading one parent’s transcripts, we developed an initial list of codes by analyzing the parent’s transcripts line-by-line. The initial codes were categorized to superordinate codes through making comparisons for similarities and differences between each incident and event (Strauss and Corbin 1990). We repeated the above analysis steps for other parent’s transcripts, allowing new categories to emerge from each participant. After analyzing all the transcripts, we integrated and produced five superordinate categories that could represent the whole transcript by continuous iterative process (Smith et al. 2009). Then, we produced three themes by finding the interactions among the categories according to the social ecosystems theory: the interaction within the micro system, the interactions between the micro system and mezzo system, the interaction between micro systems and macro systems. The analysis results are shown in Table 3.

Table 3.

Results of data analysis.

Themes	Categories	Sub-categories
The interaction within micro system	Introspect and self-cultivation	Enhance moral character, Practice ethics, Improve family relationship
The interaction between micro system and mezzo system	Acceptance of ASD	Understanding autism Develop children's specialties
	Parents to be teachers	Being an early rehabilitation teacher, Being an after-school tutoring, Being a career planner
	Expanded social network	Strong support from family gain support from parent groups establishing good relationship with teachers
The interaction between micro system and macro system.	Accepting the worst results	Children cannot find jobs, children cannot live on their own, in a welfare home for the aged, send the child to nursing home

To ensure reliability, each transcript was coded by two authors in the research. When disagreements occurred, we would go through repeated discussions and consensus building to achieve the goal of developing a credible and included taxonomy. Moreover, triangulation was also used to ensure reliability by comparing the data from the interviews of different participants and the material objects (Wu and Xin 2011). At last, we translated the original data and used in the analysis, including the quotes in the results section from Chinese to English. When quoting data, “S” stands for subject collection and “I” for interviews. The format of data citation is that of mother plus child name and data collection method. For example, M-QQ-I means interview materials from the mother of QQ.

In order to examine the validity of the study’s results, we sent the initial copy of the manuscript in Chinese to five participants. After they read the paper, a semi-structured interview was taken, inquiring if the results of this study represented their resilience experiences. All the parents confirmed that the themes and categories could illustrate the process of their coping with difficulties and developing resilience.

Ethical considerations

The study was approved by the Faculty of Education, Beijing Normal University. All the parents participated in the research voluntarily. They were informed of the research design and promised that the processed data would be anonymized to make it impossible for them to be recognized as individuals with a confidentiality agreement. Nothing identifying individual children is reported. When conducting interviews, it is important to note the fact that interview situations can be difficult for parents because their narratives can cause them to experience their own vulnerability and sadness.

Results

The initial intent of this study was to better understand how parents with children with ASD developed resilience. We organized the categories identified from the analysis process into three themes according to the social ecosystems theory as follows.

Interaction within micro system

Introspect and self-cultivation

In this research, the challenging behaviors of children with ASD place great parenting stress on parents. In addition, the inadequate support system and social discrimination against children with disabilities increase psychological pressure on parents in China. All the participants in this study once experienced negative emotions such as hopelessness, anxiety, anger and depression in the face of high levels of stress. These negative emotions, in turn, negatively affects parent’s physical health the relationship between parents and their families, leading to more stress on parents.

I have become extremely anxious and irritable these days because of my child’s problem behaviors. Have been restrained myself, but finally did not resist, because of little things at home, quarrels with my husband, in fact, I just want to find an excuse to lose temper at my husband. (M-QQ-S)

In order to stop the vicious circle of negative emotions, parents in this research insisted on reading Chinese traditional classics every day to improve their own moral cultivation and bring peace to minds.

Using the moral principles in Chinese traditional classics to evaluate myself, I found that I have a lot of shortcomings, for example, like to compare my child with other parent’s child, have no patience with children, despise my husband and so on. I thought that to change kids with autism who have a lot of problem behaviors, I must firstly change my own problems. Reading the classics and introspect myself every day was a way to take away some of my bad stuff. (M-RR-I)

In practice, self-cultivation emphasizes the use of classics to guide action. In ethical society, self-cultivation needs to be practiced in different kinds of relationships, in which the most important one is family relationship.

I used to be a very strong woman and often quarreled with my husband because of BB’s problems. After learning traditional culture, I know that as a woman, the greatest energy is to coordinate a family with her own pliant beauty. When you can control yourself, the relationship naturally changes. (M-BB-I)

When the parents changed themselves through self-cultivation, they also achieved the goal of family unity, and gained harmonious family relations.

Interaction between micro system and mezzo system

Firstly, acceptance of ASD. During the early intervention phase, parents spend most of their time providing intensive training for their children. Because of inappropriate intervention methods, children accumulate emotional behavior problems during forced training, and parents suffer from anxiety and stress due to the slow progress of their children. After repeated trial and error, several parents in the interview began to accept their children. Respecting people with ASD’s culture and developing their specialties are important strategies for parents to accept ASD.

QQ was not allowed to grow any hair on his head, and he had to go to the barber shop to shave his head almost every day. In fact, I did not want him to shave his head, but he had his own preferences, and in the process of cutting his hair, he learned to compare which shop shaved the cleanest, and also developed a good relationship with the barber. When I could accept his compulsive behaviors, constant anxiety was relieved. (M-QQ-I).

Cultivating skills has become a good intervention method for my son. Such as RR liked to keep beating things with his fingers, I let him learn to play the piano. RR liked to talk to himself, I let him learn to sing Beijing Opera… After RR developed a skill, he had the opportunity to perform on the stage. In the process of performing, his adaptability on the stage, ability to cooperate with others and self-confidence have improved. (M-RR-I）

When parents in the micro system stop seeing their children in terms of an illness and problem, the pressure they felt from their child’s disability will be reduced, and the high-risk environment from the child in the mezzo system can be reconstructed. At the same time, when parents respect their children’s development advantages, their children could make more rapid progress which become an important protective factor for parents’ resilience development.

Secondly, parents to be teachers. Facing the lack of support from rehabilitation institutions and schools in the micro system, the human and time resources of parents of children with ASD have become the most important resources which they can mobilize. Therefore, they did not hesitate to give up their original work and become a full-time teacher of their child and even started an organization or kindergarten to meet their own children’s needs.

The first role of parents was early rehabilitation teachers. In order to give children sufficient early rehabilitation training, the parents chose to give up their work and become full-time teachers of the children. For example, when LL’s mother was training with her children in the early years, the rehabilitation institutions were in remote suburbs, and she and her child with ASD had to spend a lot of time on the road every day, which was extremely hard. In order to save time, LL’s mother opened a rehabilitation institution and trained the children by herself. Later, in order to create a normal educational environment for her children, she closed the institution and founded an inclusive kindergarten.

The second role that parents played was as after-school tutors. When children with ASD enter into general school, they need multifaceted support to help them integrate successfully. The current education system in China, however, cannot provide relevant support. The parents in this study, therefore, had to provide the support by themselves. Once they found that their child met with difficulties in the school, they would immediately take action to resolve the problems.

In the first grade of elementary school, the Chinese teacher taught the students to look up words in the dictionary, and most of the classmates of CC learned it quickly, but CC did not know how to do it. CC just sat in a daze in class and sometimes he even left his seat to disturb the class order. After the teacher reflected on CC’s problems to me, I broke up the task of looking up in the dictionary into more than 10 steps, and then taught CC step by step. After spending a whole weekend, CC finally learned how to look up the dictionary. (M-CC-I)

Besides, parents took the responsibilities of being a career planner for their children. As the children grew up, they undertook a new responsibility to plan their child’s future life and employment. They hoped their child would have specific skills to live independently in the future.

When RR learned art, I also studied with him and supported him, but when he could learn well, I would withdraw. I firmly believed that he could succeed in his advantage field through decades of persistence. At that time, he certainly found a place in society. (M-RR-I)

Parent’s efforts resulted in their children’s obvious progress, which is the greatest success for them. It also marks the reduction of parents’ dilemmas and brings the development of resilience.

Thirdly, expanded social network. The social supports in the mezzo system mainly included from families, other parents groups, and teachers. Family support was the core social support for parents of children with ASD. In the Chinese familism system, family members form strong dependence relationships. When parents of children with ASD are forced to fall into a dilemma, family members become the most important support resources for them to cope with difficulties because of the lack of formal policy support.

When I was unhappy, I would chat with my husband, and then my anxiety would be resolved, so I would not need extra psychological counseling. If without my husband’s support, maybe I wouldn’t be able to go on. (M-CC-I）

My mother did most of the housework for me and helped me get rid of the tedious housework so that I could have more time to take care of the children. Without the help of the elderly, I would have to hire a nanny, which would increase family’s financial pressure. （M-BB-I）

Support from parent groups is an important official support resource for parents of children with ASD. First of all, it provides instrumental support. The rehabilitation institutions established by parents provide a place to accept intervention for their children with ASD. For example, after QQ was rejected by two kindergartens and a special school, he was sent to a rehabilitation training institution founded by a parent in another province. Secondly, it provides strategic support for parents. The older parents experiences have become important supports for parents of children with ASD to cope with difficulties and develop resilience.

LL had a lot of behavioral problems when he was young, and at that time, there were not many professional resources, so I had no idea about how to deal with them. Fortunately, I was able to get through this difficult time with other parents sharing their experiences of coping with problem behaviors. (M-LL-I)

Parent groups have created a cohesive social space for parents of children with ASD. This social space has become a resource, strategy and emotional network. Parents can use the power of the group to help themselves cope with difficulties and become an important supporting resource for parents’ resilience development.

In addition, establishing a good relationship with teachers has become a key strategy for parents to help their children get into school. During the interviews, when parents were asked how they could help their children get into general schools, all of them mentioned the importance of establishing relationships with school administrators. Although the mainstream schools excluded children with ASD, the parents used social relationships to help their children enroll.

I contacted a leader of the school through my friend and sent him some gifts. This leader promised to help me solve my child’s enrollment problems. Therefore, BB successfully entered the primary school. On the first day of school, the leader went to BB’s classroom and told the teacher to take care of him. (M-BB-I)

After children with ASD are enrolled in general schools, relationships become the magic weapon for parents to ensure that their children can be successfully included.

I was concerned about all teachers in RR’s classroom. When a teacher was uncomfortable, I would care about him/her. When teachers had conflict with other parents, I would comfort the teacher. Thus, the teachers have a good relationship with me, and they will respect me and be willing to support my child. (M-RR-I)

Through the establishment of a harmonious relationship with teachers, parents weaved a living network for their children. The children could be successfully included in this protective environment, and the parents gained resilience.

Interaction between micro system and macro system

Accepting the worst results is a parent’s important response to the risk factors in the macro system. In the interviews, all interviewees had been anxious about their children’s problems after adulthood. However, as time goes by, they realized that if the social security system was not perfect, it was hard to solve the problem of children’s independent survival in the future just by parents’ efforts. Faced with difficulties beyond their ability, all participants indicated that they could accept the worst ending for their children to live in a welfare home, and also accepted their worst ending - accompanying children into the welfare home, so they were not worried about the future and avoid too much pressure caused by unrealistic goals.

The bottom line I set for BB’ future was spending the rest of his life in a welfare home. Even if he entered a welfare home, he can not only take care of himself independently, but also can care for others. It is also will be the life of myself when I am old. I was trying to make my children become brilliant, but I could also accept his worst results. So, I am very peaceful. （M-BB-I）

Discussion

The purpose of this study was to explore how do parents of children with ASD develop resilience in China and what are the characteristics of the resilience of parents of children with ASD in China. The challenges and protective factors of an individual’s resilience are spread out across systems (Boon et al. 2012). The development of resilience is the result of individuals interacting with many social systems, such as families, schools, and even larger social systems from the perspective of social ecological theory (Sun and Stewart 2007). The framework of the development of resilience in parents of children ASD is shown in Figure 1.

Figure 1.

Framework of the development of resilience in parents of children ASD.

Development of resilience in parents of child with ASD

Introspect and self-cultivation is an important way for parents of children with ASD to acquire protection resources and develop resilience at the micro system level. When dealing with personal mental health problems caused by parenting children with ASD, parents in China are more inclined to improve their moral character, while seldom adopting the way commonly used by Western people – psychological counseling or expert services (Luo et al. 2010). Confucianism connects moral cultivation with maintaining mental health closely and believes that individuals can improve their mentality and achieve inner peace to the greatest extent through moral cultivation (Zhang and Zhang 1998). When parents of children with ASD changed themselves through self-cultivation by reading and practicing the moral code in the classics of traditional culture, they gained mental health and also avoided negative influence of mental problems on their physical health and family relationships. A virtuous circle within the microsystem improves the ability of parents of children with ASD to cope with difficulties and develop resilience.

When interacting with the mezzo system, parents having children with ASD use strategies including accepting ASD and playing various roles and expanded social network to acquire more resources and reduce negative impacts of risk factors from the micro system on parents. Firstly, in the mezzo system, the challenging behaviors of children with ASD was the core risk factors for parent’s resilience development, acceptance of ASD became an important mediating variable of parent’s adaptation to disability which decrease parents’ anxiety, stress and depression (Macdonald et al. 2010, Bitsika et al. 2013). Secondly, insufficient education and rehabilitation resources for children with ASD were other risk factors in the micro system. Parents becoming teachers make up for the lack of support in the meso system. What is more important, parents’ companionship and support brought to their children’s progress which decreased parenting stress and strengthened the development of resilience. Thirdly, an expanded social network became another important measure for parents to gain support from their family, parent support group, and school. China is a family-based society, in which family members connected by blood ties have natural close relationships with each other and have strong intergenerational dependence (Hu 2014, Liu 2012, Zhang 2012). Facing the adverse context of parents and children of ASD, family members are obligated to support each other in China. Support from families can both directly and indirectly reduce the negative effects of stress on parents and increase positive outcomes (Ekas et al. 2010, Halstead et al. 2018). School was originally a high-risk environment for children with ASD in China, because general schools usually excluded children with ASD and had very limited support for these children. However, parents of children with ASD can transform to a high-risk school environment into a protective context by establishing friendly relationships with school administrators and teachers. In this way, they could get admission opportunities for their children and gain more support from teachers. In addition to obtain support from families and the school context, parents of children with ASD in China also actively obtained the instrumental and emotional support of the parents’ group by participating in the parents’ mutual aid organization. Essentially, family support, parent group support, school support have become important social supports for parents, which have played important roles in aiding parents of children with ASD to successfully cope with their struggles (e.g. Ekas et al. 2010, Lovell et al. 2012, Tehee et al. 2009, Weiss et al. 2013).

In the level of interactions between the micro system and macro system, access to services, cultural ideology and social institutions etc. in the macro system may affect an individual’s resilience either positive or negative (Boon et al. 2012, Liu et al. 2017). In China, a lack of official support and social discrimination make it difficult for children with ASD to find jobs and survive independently after their parents die which brings great psychological pressure on parents. Facing the above difficulties beyond parents’ ability, accepting the worst result is an adaptive strategy for parents of children with ASD to maintain mental health and have more energy to cope with current difficulties (Brandtstädter 1999b).

Characteristics of resilience of parents of children with ASD

Resilience has been generally defined in two broad ways: as a desired outcome(s) or as a process leading to a desired outcome(s) (Kaplan 1999). We analyzed the characteristics of resilience in parents of children with ASD from the process and the outcome.

The main way to develop resilience for Chinese parents having children with ASD was building positive relationships with themselves and outsides though active interactions. The processes and experiences that the individual is exposed to either directly or through proximal interactions with the various systems above are thought to structure their perceptions and responses, their behaviors, their adaptation, coping with stress and resilience (Bronfenbrenner and Ceci 1994). Relationships are not only a protective resource for parents to alleviate psychological burden, but also an important strategy for parents of children with ASD to obtain protective resources in the network.

In terms of the outcome of resilience, Chinese parents having children with ASD interact with their social systems to change the social environment of them and their children. The formation of resilience not only depends on whether parents adapt well, but also whether the family members, especially their children, have reached the adaptive expectations of their parents. Compared to individual-oriented Western society where people value the concept of rights, in ethics-oriented China, people value the concept of social responsibility (Fei 2013, Sun 2015). Parents try their best to obtain social resources to build a more supportive environment for their children in the family, in schools, and in the community. All the participant parents temporarily gave up on their personal development, while they gained psychological balance and a sense of achievement from their children’s progress, resulting in gaining resilience.

Limitations of the study

The research questions focused on exploring the factors of parents’ resilience of children with ASD in the Chinese context. Although we carefully selected the cases in our research, the participant parents all had the upper middle-income, more than 10 thousand RMB per month. While high income is an important protective factor of the development of parents’ resilience of children with ASD, with the increase of economic income, the overall level of resilience of parents of special children has gradually improved (Xu 2010). The results of this research maybe cannot explain the experiences of those who have developed resilience at a low economic level.

Moreover, the study focused on the parents’ resilience individually rather than taking families as a whole unit, which may have ignored the function of families when dealing with the challenges of raising children with ASD. As a social unit, families will apply their ability and resources to meet their needs and maintain normal operation. From the perspective of the family ecosystem, researchers can consider the plight of parents in the family unit and discuss how family members communicate in the face of difficulties from a broader perspective.

Implications for practice

These findings can function as a driving force for parents, family members, professionals and other stakeholders to enhance the protective factors and optimize professional intervention for parents of children with ASD. First and foremost, the intervention should not only focus on the individual resilience of parents, but also pay attention on the resilience that can be found in families and fostered in couple and family intervention (Walsh 2003). Professionals and other stakeholders should acknowledge parents’ strengths, encourage them to utilize their own resources, and help them recognize their own capacities for resilience. Secondly, when professionals support parents with ASD to develop resilience, they need to pay attention to the interaction of parents with other social systems. We should know that parents are not independent individuals; they are in different kinds of relationships, especially in their family relationships. It is important to build collaboration among families having children with ASD, enabling them to build new and renewed competencies, mutual support, and shared confidence that they can prevail under duress. The professionals and service providers need to help parents improve their social relations in order to obtain more resources protection. Besides, working with families of children with ASD need to capture the whole experience of families, and not just the negative experiences (Bayat 2007). Service providers, who interface with the families of children with ASD, can communicate to them a conviction that these families can be resilient.

Funding Statement

Funded by Grant No. 18YJC880140 and Grant No. 20YJC880015 from the Department of Social Sciences, Ministry of Education and Grant No. 110003250805 from China Women's Women's University.

Disclosure statement

No potential conflict of interest was reported by the author(s).