The Importance of Parent‐to‐Parent Support among Families of Children with Autism in the People’s Republic of China

Abstract

This article reports the experiences of families of children with autism in the People’s Republic of China. The caregivers of 43 children with autism attending one of two short‐term (3‐month) intervention programmes for young children with autism were interviewed about their experiences before, during, and after the programme. Parent‐to‐parent support emerged as the main theme. Specifically, caregivers in this study discussed the value of being with other parents who share similar experiences. Two reasons were given for the importance of parent‐to‐parent support: to learn from each other, and to gain moral support and encouragement in a relationship that is more equal and less discriminatory than was experienced from others in society. This report also briefly highlights the factors that are similar to family experiences in western contexts, as well as factors that are influenced by the Chinese context.

Keywords:

• autism
• China
• family
• international
• parents
• peer support

Introduction

Much research has been undertaken on relationships between parents (or other family caregivers) and professionals, and a number of authors have pointed to the importance of these relationships in terms of the quality of services and family outcomes (see Dunst & Dempsey, 2007; Summers et al., 2007). Parents of children with disabilities play varied roles in their children’s lives. In developed countries, many are constantly engaged in relationships, and often partnerships, with professionals (Dunst & Dempsey, 2007; Keen, 2007). In the United States, children are provided by law with specialised services via entry into the early intervention or special education system from the time of diagnosis. Despite the existence of these formal services in most western countries, parents often feel a need for, and receive great benefit from, support from other parents. This type of support, parent‐to‐parent support, has been increasingly discussed in the western literature (see Hartman, Radin, & McConnell, 1992; Kerr & McIntosh, 2000; Naseef, 2001; Singer et al., 1999). Being with other parents who also have children with disabilities, sharing experiences and mentoring each other can help parents cope with their own experiences (Klein & Schive, 2001; Turnbull, Blue‐Banning, Turbiville, & Park, 1999). This might occur when parents are in a paid position to provide support (Klein & McCabe, 2007; Naseef, 2001), but often occurs through volunteer or other informal arrangements.

Research in various western countries has shown that support for parents of newly diagnosed children with disabilities can be effectively provided by more experienced parents (Hartman et al., 1992; Kerr & McIntosh, 2000). Family support programmes may comprise multiple components, such as the development of relationships with other families with similar experiences (Dunlap & Fox, 2007). Parent‐to‐parent support programmes have been described as programmes that generally match trained, experienced parents (usually volunteers) with parents for whom help is needed (Singer et al., 1999). In the United States, for example, Michigan’s Parent Participation Programme (renamed The Family Center for Children and Youth with Special Health Care Needs [CYSHCN] in 1996) has trained parents to provide support and information (such as referrals to and information about professionals) to other families whose children also have medical problems or disabilities. Across the United States there are multiple local Family Support Network chapters, organised, directed, and attended by parents (Hartman et al., 1992; CYSHCN, 2007).

An early descriptive study on parent‐to‐parent support focused on parent networks for hospitalised children (Winch & Christoph, 1988). This study examined the effectiveness of parent‐to‐parent support to parents whose children were hospitalised. Experienced parents provided suggestions and advice for ways to deal with problems and issues both at the hospital and after discharge. The support described in this study was non‐categorical, where “the only apparent commonality is having a hospitalised child” (Winch & Christoph, 1988, p. 94), rather than through matching families on the basis of their children’s specific diagnosis. The four objectives of this programme were to provide support for parents of children in the hospital by providing a space to share their feelings and experiences; to provide education and information about the hospital; to allow parents to discuss and understand their own needs, separate from their children’s needs; and to assess each family’s specific needs. This latter was achieved through group interaction. Results of this study found that such group interaction provided a space for sharing, but also for problem‐solving (Winch & Christoph).

Another study involving families of children with various health conditions focused on psychological outcomes of a parent‐to‐parent network specifically for mothers (Silver, Ireys, Bauman, & Stein, 1997). Over 300 mothers of young children (ages 5–8 years) with various health problems were assigned to either a treatment group, which was a year‐long support programme (the Parent‐To‐Parent Network), or a control group receiving typical treatment that did not include this support programme. The goal of the support programme was to promote psychological well‐being by increasing social support and access to information and knowledgeable persons who were selected and trained as “lay counsellors”. The programme involved approximately six in‐home visits (or at the hospital, if the mother preferred), and at least bi‐weekly telephone calls. Over the 12‐month period, there were also three group activities to bring all of the participating mothers and their children together. While there were no significant differences on post‐test scores of mothers’ depression, anxiety, anger, or cognitive disturbance between the two groups, the authors pointed out that the experimental group had greater improvement from the baseline, at which time they had more difficulties than the control group. Also, the study found that, for those mothers with more than five stressful life events in the past year, those in the treatment group had lower anxiety. An interesting point made by the authors was that mothers in the treatment group were given post‐test measures immediately after discontinuing the programme, which may have been a time of increased distress because they knew that the programme was ending (Silver et al., 1997).

Two studies examined the effectiveness of parent‐to‐parent support programmes in five states in the United States (Ainbinder et al., 1998; Singer et al., 1999). Singer and colleagues used both quantitative and qualitative analyses to examine the impact of parent‐to‐parent support programmes on parents’ perceptions of their coping efficacy, empowerment, progress in meeting important needs, and their attitudes of acceptance about their family and situation. The quantitative results showed that parents who participated in such support programmes made gains in acceptance of family and disability, progress in getting help with their stated needs, as well as gains in coping by those parents who began the study with coping skills perceived to be low. Qualitative data analysis revealed that a majority of participants found perceived sameness to be a benefit; in other words, parent‐to‐parent support meant finding others “out here that understand” them (Singer et al., 1999, p. 225). Using qualitative methods, based on the same sample of parents, Ainbinder et al. reported the importance of availability of parent mentors, assigned to a parent whose child was newly diagnosed, who were available at all times, usually reached by telephone. Similar to the issue of availability, other studies have also found that parent‐to‐parent support enables parents to feel less isolated (Kerr & McIntosh, 2000; Winch & Christoph, 1988).

Research has also demonstrated that both parents who receive support and those who give support may experience positive effects through their interactions with each other. Specifically, effective coping is promoted and both new and experienced families feel less isolated and sad (Dunst, 1987; Hartman et al., 1992). When the support person is also a parent of a child with a disability, assistance is often bi‐directional (Ainbinder et al., 1998). This has been referred to as “coming full circle” for the parents who are providing support—in that they are no longer simply recipients but are also now benefiting by being the helper, and thus support is flowing both from and to the supporting parent (Kerr & McIntosh, 2000, p. 318).

Supporting other parents in a paid capacity is also rewarding and important, although research on this is more limited. Naseef, a parent of a son with autism, described himself as having a “foot in each world” due to being both a parent and a professional psychologist working with individuals and groups of families of children with special needs (2001, p. ix). He suggested this provided him with a unique perspective when helping families. A recent study found that parents felt better about themselves, more confident, and more positive about their experiences when they were doing a professional job in early intervention that involved helping other parents of children with disabilities (Klein & McCabe, 2007).

Families and Disability in China

The need for informal or formal peer support may be especially urgent in China, where children with autism are often routinely turned away from a school setting (McCabe, 2004) and where there is no guarantee of social welfare or other services for children with disabilities. Special education began to be provided for some students with disabilities on a small scale in the late 1970s in China, with education for children with autism a later development that still lags behind the provision of education for children who have cognitive or sensory impairments. Children with autism were first diagnosed in China in 1982, when the first 11 children were diagnosed by Dr Tao Kuotai in Nanjing (Tao, 1987). Since 1978, when the period of Reform and Opening (gaige kaifang) began, there have been social, political, and economic reforms that include substantial educational reform as well. This has included efforts to provide education for children with disabilities, beginning with children with hearing, visual, and mild cognitive impairments. However, educational services are still far from sufficient. In the two decades since autism was first diagnosed in China, a growing number of doctors have begun to recognise and diagnose autism; but in smaller and more remote regions, there are still many doctors who are not aware of the disability or its diagnosis. Moreover, teachers and schools also are unfamiliar with the needs of children with autism and feel they are unequipped to deal with them. As a result, parents are often turned away from both general and special education settings with the excuse that schools do not understand autism and cannot help their child (McCabe, Wu, & Zhang, 2005; Rubin, 2000). To be sure, educational opportunities are increasing for children with autism but these are still not sufficient, and thus parents are often left with no professional support.

Families in China face challenges related not just to a lack of information and services, but also to the stigma associated with disability, and thus they lack social support. Previous research has found negative attitudes and feelings of shame regarding epilepsy (Fong & Hung, 2002) and mental illness (Tsang, Tam, Chan, & Cheung, 2003; Yang & Pearson, 2002). Families often feel shame about having a child with a disability and many people still believe that disabilities are the result of something the parents (often the mother) have done wrong (Holroyd, 2003). However, despite a feeling of embarrassment about having a child with a disability, recent research about parents and children with cognitive disabilities also demonstrates that these parents want the best for their children. For example, a study of Chinese rural and urban families found that although they responded to and supported their children in different ways, both groups of parents were committed to preparing their children to live as comfortable and fulfilled an adult life as would have been possible without the disability (Liu, 2003). Moreover, Yan (2005) has noted there is gradual acknowledgement that people with disabilities have a right to a high quality of life, and traditional cultural beliefs that they are “useless burdens on society” (Yan, 2005, p. 43) are slowly changing.

Methodology

The study presented in this article is part of a larger qualitative study that examined services for families at a private, non‐governmental organisation and a state‐run medical institution, both of which have a focus on children with autism and their caregivers (McCabe, 2004). While the larger study focused on a general comparison of these two services, the focus of this article is on the impact of attending either of these services programmes on parents and other caregivers of children with autism. The study presented here sought to determine what parents perceived as the main impacts of attending a short‐term intervention programme with their child with autism. In order to understand the settings for the research, the two sites and their services are described, followed by the study’s participants.

Settings

The private organisation, the Autism Institute (pseudonym), was founded and is directed by a mother of a young man with autism. It offers four, 11‐week sessions per year. Approximately 40 families of young children (ages 3–8 years), as well as approximately 25 families with older children (ages 8–14 years) are involved in each session. Families are served in four small‐group classes of 9–10 children and their caregivers, as well as a weekly Parent Meeting, which is a lecture and discussion class led by the Director and including all parents. At the Autism Institute, parents are the students; they are taught to use methods of Applied Behaviour Analysis, and specifically Discrete Trial Teaching (Lovaas, 1981; Maurice, Green, & Luce, 1996) for teaching their own children. Each day they are taught using demonstration and hands‐on instruction.

The medical organisation, the Child Centre (pseudonym), is a government‐run mental health centre, directed by medical personnel. It provides services to families on a more individual basis, for approximately three months. Still, there are approximately 12 families accessing this service at any given time. Although individual instruction is provided, the parents often interact with other parents in the hallway or in the activity room while waiting for their class to begin. At the end of each morning and afternoon session, all families also participate together in group music/dancing instruction. This organisation also focuses on training parents in order that they may return to their homes in various parts of the country and continue to teach their own children. At the Child Centre, however, instruction follows a more traditional approach where children are taught by teachers, and parents simply observe on the side.

Both the Autism Institute and the Child Centre are located in major cities.

Participants

Semi‐structured interviews and multiple informal conversations were conducted with the caregivers of 43 children with autism. Some children had one parent/caregiver, others had two parents/caregivers. The interviews were guided by questions, but were always shaped to some extent by the focus of the interviewee (Bogdan & Biklen, 2003; Merriam, 1998). All children, at both organisations, had been diagnosed and given the label of “autism”—with the exception of one child at the Autism Institute who was diagnosed as having “autistic tendencies”. Other labels available in the West such as Pervasive Developmental Disorder or Asperger’s syndrome are not yet widely known and available in China. At the Autism Institute, 35 of the 36 families attending the early childhood classes agreed to participate. In these families, 31 children were boys and four were girls. The ages of children (reported in interviews with the parents) ranged from 3 years 2 months to 11 years old, with a mean age of 5 years and 2 months. At the Child Centre, 8 out of the 10 families agreed to participate. The children comprised seven boys and one girl aged from 4 years to 7 years, with a mean age of 5 years 2 months. Families in both organisations came from various parts of China. Some were from the city where the organisation was located, some were from provinces nearby, and others had travelled over 2000 km to attend.

The author verbally invited all the participants at the two organisations to participate in the study. A Study Information Sheet requesting informed participation (cleared through the home institution’s Institutional Review Board) was provided to the participants before the interviews.

Procedure

Interviews were conducted with either one or both caregivers. The choice of who would attend the interview was made by each of the participants. Except for four of the families, all caregivers were parents. In the other four families, there were three aunts and one grandfather acting as the primary caregiver during the 3‐month programme, and thus it was these four individuals who participated in the interviews. (Parents is the term used throughout for ease of communication.)

Interviews consisted of open‐ended questions designed to understand the parents’ perceptions of their experience during and after the programmes with their child with autism. Specific questions included “What did you hope to gain by attending this programme?” and “What are your wishes or what do you still need after attending this programme?” Other questions asked the parents to describe their families, their experiences in this and other autism programmes, and their hopes for the future. Allowing families to provide information that was not “led” by the interviewer meant that the interviews lasted between 45 minutes and 2 hours. In addition to face‐to‐face interviews during their time at the organisations, two follow‐up questionnaires (containing open‐ended questions) were sent to all participants at two points in time after departure from their respective programmes. In order to further investigate the experiences of these families, the first questionnaire had 14 questions and the second had 12 questions. Some questions asked about their current situations (including education, support, or any intervention for their children) and how they had been affected by their time in the programme, if at all, while others asked about ongoing challenges and needs. Questions in the first and second questionnaires were similar and focused on gauging ongoing and changing needs and responses. All interviews were conducted by the author, and questionnaires were written and mailed by the author after parents completed the programmes. Interviews were conducted in Mandarin Chinese, and questionnaires required written responses in Chinese, the native language of the participants (the author is fluent in Chinese). Permission to tape‐record the interviews was sought and all but one mother agreed, and she agreed to note‐taking by the researcher. Questionnaires were sent 1–2 months and 10–12 months after each caregiver’s departure from his or her respective programmes. For the second questionnaire, two were returned unopened (families had moved and no forwarding address was available). For the first questionnaire 34 (out of 43) were completed and returned, and for the second questionnaire 31 (out of the 41 that were successfully delivered) were returned (79% and 76% return rates, respectively).

Data Analysis

Data analysis was carried out through coding and generation of themes based on the constant comparative method (Glaser & Strauss, 1967). The interview questions guided the interview, and codes were generated from the data, beginning during data collection. Specifically, each unit of data (in this case, each statement of each participant) was given one or more codes; multiple codes indicated that the data fitted into more than one category (Bogdan & Biklen, 2003). For example, codes included “home environment”, “parent training”, and “concerns for the future”. A list of the codes was kept in order to compare subsequent data with data that were already coded. The code list was generated during transcription of the tapes, but was articulated in more detail once tapes were transcribed and codes began to be physically placed next to data. Grouping codes into broader categories (Strauss & Corbin, 1990) led to the generation of major themes.

Lincoln and Guba (1985) suggested several techniques for establishing trustworthiness and dependability of data, including activities that make the production of credible findings and interpretations more likely, including prolonged engagement and triangulation. In this study, prolonged engagement allowed for a deep understanding of the views of the participants, as well as for the building of trust between the researcher and the participants. Data were collected (or triangulation occurred) across the different methods, including interviews, informal conversations, and questionnaires, and across different sources (multiple participants). Conversations, questionnaires, and interviews with parents provided information about the perceived impact of the programmes.

Another technique advised by Lincoln and Guba (1985) to check the trustworthiness and credibility of qualitative data is peer debriefing, which provides an external check on the research, specifically the analysis of the data. For this research, an external peer (who speaks both English and Chinese) was invited to provide reflection and comments on the work of the author at two stages. First, initial coding was shared with her, and, upon discussion, she confirmed the importance and relevance of the codes, but also encouraged the author to explore certain ideas further. Then, after all data were transcribed, coded, and sorted into categories, initial themes that were generated were shared with this peer. This involved discussing the steps used for coding the data, sharing the raw data that had been coded, the categories that had been developed, and the themes that had been generated, to ensure that the themes indeed emerged from the voices of the participants. In the Results section, the parents are referred to with either AI or CC, to indicate which programme they attended (Autism Institute and Child Centre, respectively), followed by a number. Each family was given a number, in order to ensure confidentiality.

Results

The theme of parent‐to‐parent support was very salient in the larger study (McCabe, 2004), and results related to this theme are reported here. Support from other families of children with autism was highly valued by the participants in this study. They talked about parent‐to‐parent support in two ways; sharing and learning from each other, and support and accepting each other.

Sharing and Learning from Each Other

When asked about the ways in which these programmes affected them, the parents repeatedly emphasised the importance of learning from other parents, and learning by being with other families who also had children with autism. At the Autism Institute, just days after the cohort of 36 families arrived, several parents reported experiencing and looking forward to further exchanges with other parents. According to Mother AI 3, several parents talked late into the evening during the first week. She said “Parent exchange is extremely important” because they could share experiences and learn from each other, because, as parents of children with autism, they could really understand each other. Mother AI 1 said: “[Here] families can often contact and communicate with each other, these are the methods I use to teach my child and the methods you use to teach your child … we help each other.” Soon after arrival, Mother AI 15 also talked about learning from other parents: “I feel it is very good, exchanging with each other. If there is something I don’t understand, I can ask them.” After leaving the programme, Mother AI 16 reflected that “Often calling, chat a bit, we can exchange understanding of teaching (from experience) and methods.”

At the Child Centre, families did not live together and eat together, and they did not arrive and leave at the same time; nevertheless, during the waiting periods between classes, they had the opportunity to talk informally with each other and observe each others’ children. Even though their interactions were more limited, they felt that one of the benefits of the programme was learning from other parents. Grandfather CC 1 said that the greatest benefit of the Child Centre was the opportunity to talk with other parents and learn from them. Specifically, they helped teach his child to ride a bike, by showing him (the grandfather) how to use hand‐over‐hand assistance. Grandfather CC 1 said:

And in addition he learned to ride a bike, that tricycle. I feel that the biggest gain that I got this time is being with these parents. They are the best teachers, they have a lot of difficult experiences. That is, they told me about their experiences of how to teach their children.

Upon return home, Mother CC 4 also mentioned professional support and learning from other parents. She wrote:

I still need to learn and grasp more and better methods and strategies for teaching children with autism. I need exchange with autism parents and communication with experts/professionals, to set up a bridge of “exchange of needed goods” [hutong you wu].

Parents attending the Child Centre and the Autism Institute continued to talk about parent‐to‐parent support both at the end of their programme and after returning home. Mother AI 11 said:

[Parent exchange] has been very helpful to me. Exchange with each other, and then, think about it, some parents … these parents are all very good, parents in Class A, etc [other classes] … what they are teaching, we exchange experiences. That is, if I can’t teach, if there is something I can’t teach, they tell me a method.

Caregiver (Aunt) AI 17 used the Chinese idiom “quchang buduan” (learn from each other’s strong points to offset one’s own weaknesses) when she wrote about sharing experiences with other parents. Mother AI 18 also talked about having others around to give advice to solve possible problems:

… It is a good thing [living with other parents] … If, when you have a question, it’s fine, you can say it out loud. Maybe other people will have a [solution], to help you solve it. When she [other person] has a problem, when she can’t figure it out, she tells you, and maybe you can think of a way to help her solve it. Then everyone learns some things from this. Absolutely you should not close yourself off … I think, it seems, no matter how smart a parent you are, you will always have something that you don’t know how to do. Maybe that person across from you, maybe she didn’t attend much schooling, but who knows maybe she can think of a way to teach your child.

Another benefit of being with other parents was pointed out by parents AI 20. They talked about avoiding errors they saw other parents make during their teaching. Mother AI 20 talked about a parent who kept telling her child to “say uncle, say uncle” and the child repeated “say uncle, say uncle”. From this, she and her husband learned to only model the word “uncle”. She said, “[For example], maybe their child can talk, how they taught this, some mistaken [methods], they can remind us, and we won’t go down that windy path [zou wanlu].”

Parents talked about the unique opportunity to both learn from each other and teach each other in the environment of the Autism Institute. Shortly before completing the programme, Mother AI 4 reported that she was pleased to have shared experiences with Mother AI 5, with whom she was assigned to sit in the dining hall, and to have been told that Mother AI 5 learned from her:

I have improved from the exchange here. I think the group [atmosphere] here is very good. This is something that is impossible at home. For example, you are at home, other people don’t understand ABA, here all of the parents understand. You ask her, and everyone understands … I feel that the environment here is helpful for the child. Everyone studied this method, and then, it can also give parents [help] … for example, we don’t understand, those parents understand, we can learn from them. Then they don’t understand, they ask me, I tell her how to teach, that is we learn from each other. It’s not just, I learned this and that’s enough. You must learn with others, learn from each other. That parent who I eat with, she said, “Wow, I learned a lot sitting with you!”

This was especially significant because Mother AI 4 had not completed her own primary school education, and began the programme feeling very unsure of her abilities.

Parents at the Child Centre also talked about learning from other families, in different ways. One way that parents learned from other families was simply by seeing other children, and understanding more about autism through this experience. Mother CC 5 said she learned about autism by:

watching other children … Because, before, when I hadn’t come here yet, there are no children with autism [at home], so I understood very little about this … We just thought, he is different from other people. But … I didn’t know what [autism] was.

Mother CC 3 also talked about learning by observing other children.

In the past, I really didn’t understand autism. It was when I came here that I finally believed my child had autism. Before, I didn’t believe my child had autism. Why, because I hadn’t seen before [anyone with autism] … I didn’t know what they are like, are they like my child, or are they like other children, I didn’t know. Because there were none in my area, so I didn’t know. Only after coming here do I know that my child indeed has autism … [I found this through] observation. Because some of them, characteristics that he used to have, it is the same on other children. So, even if you don’t believe it, you have to believe it.

Supporting and Accepting Each Other

The second theme that emerged from the parents’ data about the impact of an intervention programme on them was how it felt to be with other parents and families of children with autism. Specifically, the ideas of acceptance and encouragement were repeated constantly, during and after the programmes. These ideas were mentioned more frequently by the parents attending the Autism Institute. These parents were organised into four groups of nine families and felt a bond with their “classmates” (tongxue) that they hoped would continue after completing the programme. Benefits were also described by caregivers at the Child Centre in terms of support and acceptance from other families. According to Parents AI 21 and Father AI 33, for many families it was the emotional support and encouragement that was the most important. After their return home, Parents AI 21 wrote that for “this type of parents, what they need most is mutual encouragement, mutual support, and help.” Father AI 33 said shortly before returning home:

Exchange between parents, in fact what is most [important] isn’t exchange of methods, but [rather] to put it nicely, emotional exchange. Psychological consolation. Because with other regular parents, there is no way to communicate. They don’t know, they don’t know many of our … if we say our child is this way and that way, they can’t understand.

The difficulty of talking with people without a child with autism was expressed by many parents. Mother AI 15 said: “I feel that with parents, being together with these parents is very important. We can all talk about the words in our hearts. Sometimes, there is no way to talk about it with other people.” Mother AI 32 had a very similar concern:

Exchange, speak our feelings, that is, encourage each other. That is, other people don’t understand, talking with parents of normal [sic] children, they don’t understand this feeling. But we all understand. We are concerned for each other and encourage each other.

Being with parents who also had a child with autism also made many parents feel a sense of equality that was lacking in their home areas. Mother AI 25 said “Here, I feel that everyone is a parent, we are all the same, we often talk about our children, and we can say anything.” Mothers AI 18 and AI 1 also talked about feeling a sense of equality.

This environment is definitely different. To be frank, everyone is equal here. First is this. There is no discrimination, discriminatory looks toward other people. There absolutely is none. (Mother AI 18)

I am a little worried [about going home] because now, this instructional environment at the Autism Institute is extremely good. For one thing, there are more opportunities for parents to exchange with each other, that is our emotional state [xintai] is very broad [very relaxed and tolerant], that is, everyone is this kind of child, being together, it is very easy to talk together. I feel it seems there is a kind of “fellow sufferers sympathising with each other” [tongbing xianglian], that is to say, we are all the same illness, together. Parents really have a common language. This is good. But after we go back, what we face are all normal [sic] children, in this way it is hard to guarantee keeping up this emotional state. (Mother AI 1)

Parents also believed that they were helped to sustain their spirits and confidence. This was achieved while at the Autism Institute by praising each other and each others’ children. Many parents told Mother AI 21 that she was the best in terms of teaching her child. Mother AI 1 talked about the parents encouraging each other by having high aspirations for their own and each others’ children. This was something that had never occurred at home, as their children were always compared with typically developing children. They talked about feeling motivated by being with each other or learning about the progress of others. After returning home, Mother AI 25 commented about the importance of being motivated by the hard work of others. She said:

[Keeping in touch with other parents] is beneficial. Communicate with each other, encourage each other, inquire about how their instructional time is arranged, and understand children’s improvement situations. When other people’s children have improved, we also must work quickly, to make [own child] have an even greater improvement.

Parents AI 15 also reflected on the hopefulness they felt when they learned that other children had improved since completing the programme:

We keep in contact with several parents each week. We talk about what we have learned, we encourage each other. This makes us feel not quite so helpless. When we hear other people’s children have improved, it makes us see our own child’s future hope.

Discussion

This study sought to investigate two groups of Chinese parents’ perceptions of attending intervention programmes for their children with autism. Both programmes involved parent‐to‐parent support. As in many countries, the results of this study indicated that parent‐to‐parent interactions are an essential form of support (e.g., Dunlap & Fox; 2007; Hartman et al., 1992; Kerr & McIntosh, 2000; Klein & McCabe, 2007; Naseef, 2001). This was the case for various reasons, including the practical benefits of learning from each other, as well as mutual support and emotional benefits of feeling equal and comfortable with those who were similar to them. These parents’ experiences indicated that there were many similarities to those of families in the West but, given the context of limited services and stigma in Chinese society, there were some unique challenges as well.

Research in the West has found that being with other parents of children with disabilities, sharing experiences and mentoring each other can help parents cope with their own experiences (Hartman et al., 1992; Kerr & McIntosh, 2000; Turnbull et al., 1999). Whether as a volunteer or as a professional, often families mutually benefit, with gains being experienced by both the helper and the recipient of help (Kerr & McIntosh, 2000; Klein & McCabe, 2007; Naseef, 2001). The families in this study were extremely enthusiastic about what they had learned from other families, and about the emotional support and comfort that they felt when they were with other families of children with autism. They also were eager to help each other, moving from being a recipient of support to becoming a provider of support. An especially powerful example was that of Mother AI 4, who had not completed her own primary school education and began the programme feeling very unsure of her abilities. Her pride in helping another brought her full circle from being helped to being a helper (Kerr & McIntosh). Furthermore, the families in this study wanted to continue receiving and providing this type of support after returning home.

Many of the families reported that they tried to keep in touch by telephone, email, or letter. However, once they were home they feared (and often it was the case) that there was little or no opportunity for the face‐to‐face interaction that they found so enjoyable and useful. In China, the lack of opportunity for support from other parents when in one’s home area appears to be connected directly to issues of stigma towards individuals with disabilities (Fong & Hung, 2002; Tsang et al., 2003). Many of the families indicated that they had heard of other families in their area with children with autism, but those families had never admitted this and did not attend or seek any specialised services.

Limitations, Implications, and Future Directions

The results of this study should not be taken as applying to all families of children with autism in China. Intervention services, which are largely located in major cities, limit those who can attend. The costs are also high. Parents’ enthusiasm about parent‐to‐parent support may have been strong because they were currently attending a targeted intervention programme. Future research should follow‐up families on their return home from such programmes in order to examine whether this type of support has influenced the participants’ activities in their home areas. In addition, future research might seek out other families of children with autism in China who are not attending intervention programmes, and investigate their current and desired sources of support. Only in this way can a thorough understanding of the place of parent‐to‐parent support in Chinese culture be gained.

Other limitations of this study include the young age of the children in the families, as well as the fact that most (but not all) of the interviewees were mothers. Future research should examine families of older children, as well as actively seek out fathers’ perspectives. The fathers in this study did find parent‐to‐parent support valuable. But in other studies involving a larger number of fathers, data of fathers and mothers might be analysed separately to gain a deeper understanding of the unique needs of each parent group.

Perhaps one of the most important implications of this research is the understanding that parents can and should be acting in support roles in intervention programmes. It is suggested that parent‐to‐parent support be included in such programmes whenever possible. In this way, parents can provide direct examples to other parents as part of these services, including advice on what they may face, or strategies for helping their own children. Having experienced parents as role‐models will make newer parents aware that they too can become experts and support persons. Parents can also be involved in other ways, ranging from volunteering on advisory committees to being full‐time paid employees (e.g., as administrators or mentors). Ideally, parents would work together with physicians and educators at the levels of practice and policy to both provide services and advocate for improved services.

Parents in China have already begun to advocate for themselves, their children, and other children. By seeking out services, as the families in this study did, they are taking a step towards challenging discrimination against individuals with autism. Rather than hiding their children at home, these families have sought out help, and learned that they are not alone. Efforts towards social reform are often pursued by groups of people personally invested in the particular reform. In this case, it seems likely that these families will begin slowly to work together and create a more welcoming and inclusive society for individuals with disabilities in China.

Acknowledgements

The findings reported here are based on research that was partially funded by a Hobart and William Smith Colleges Faculty Research Grant, and no restrictions have been imposed on free access to, or publication of, the research data. The content of this publication does not necessarily reflect the views or policies of Hobart and William Smith Colleges nor does mention of trade names, commercial products, or organisations imply endorsement by them. Opinions reflect those of the author and do not necessarily reflect those of the funding institution. The author had no financial or other conflicts of interest.