April 5, 2007
Parent Advocacy in the Face of Adversity: Autism and Families in the People’s Republic of China
By McCabe, Helen
This article describes the experiences of 43 families of children with autism in the People's Republic of China. Qualitative analysis of interviews and questionnaires revealed three main themes regarding caregiver and family experiences. First, parents reported many openly discriminatory beliefs and practices against individuals with disabilities and their families. Second, public schools in China often reject students with autism, limiting opportunity for intervention. Finally, parents in this study reported sacrifices and decisions that demonstrate the love for their children that is so often named as an important part of Chinese culture. Although this is similar in many ways to parents all over the world, the challenges and obstacles faced by parents in China, and the lack of assistance for them, make consideration of their efforts and commitment worthwhile.The value of parent advocacy and parent involvement in the education of children with autism has been reported extensively in the literature (Dawson & Osterling, 1997; Dunlap & Fox, 1999; Lovaas, 1978; National Research Council, 2001). In the United States, for example, parents of children with disabilities are full members of their child's educational team as mandated by the Individuals with Disabilities Education Act (IDEA; Vocational and Educational Services for Individuals with Disabilities [VESID], n.d.). Intervention programs that involve parents have been found to increase parents' sense of competence and confidence about their child's learning and development (Bruder, 2000; Dawson & Osterling) as well as provide support for the emotional and logistical stresses that result from having a child with autism (National Research Council). Parental involvement promotes generalization and maintenance as parents help ensure that skills learned at school transfer to the home and community settings. Effective training for parents includes both initial training and accompanying ongoing support that assists parents in sustaining efforts to teach at home (National Research Council). Clearly, parent effort and participation are important. However, although the ideas of parents' being a part of an educational team and generalizing gains made in a classroom are common themes in other countries, they are not yet common in China.
Due to a lack of schools and professionals in the People's Republic of China, parents of children with disabilities often are not members of a team, but rather are the only teachers of their children. This can be extremely stressful and difficult for them. In addition, Chinese families face many difficulties because of social and cultural beliefs about disability. Despite the challenges, parents' efforts to help their children are impressive, and this article highlights these efforts. It is hoped that raising awareness about families of children with autism in China will provide both new insights to readers regarding their own situations as well as a forum for increased cross-cultural understanding.
Special Education Services and Families of Children With Autism in China
The 1970s saw the advent of special education services for students with disabilities in China; however, the provision of educational services to children with autism has been slower to develop. An important year in terms of reforms in Chinese society was 1978, when the period of Reform and Opening (gaige kaifayg) began (and after the Cultural Revolution [1966-1976] had ended). The social, political, and economic reforms implemented since 1978 have included an emphasis on the importance of educational reform. Comprehensive reform of the educational system included efforts to provide education for children with disabilities, beginning with children with hearing, vision, and mild cognitive impairments. By 1990 there were 746 special schools, along with 1,885 special classrooms at general education public schools, serving 80,000 students with either sensory or cognitive impairments (Lynch, 1994; National Education Commission, 1991).
However, with 8.18 million children (ages 0-14) with disabilities as of 1987 (Xu, 1994), clearly this was still not enough. Children with autism were not even diagnosed in China until 1982, when the first 11 children were diagnosed by Dr. Tao Kuo-tai in Nanjing (Tao, 1987). In the two decades since autism was first diagnosed in China, a growing number of doctors have begun to recognize and diagnose autism in children. However, there are still many doctors in smaller, more remote locations who are not aware of the disability or its diagnosis. In many cases this delays diagnosis as parents search for a doctor who can help them.
The lack of awareness among teachers is even greater than among doctors; thus, parents who try to enroll their children in school, whether in general education or special education settings, are often turned away with the excuse that schools do not understand autism and cannot help their child (McCabe, Wu, & Zhang, 2005). The first programs for autism in China began in the early 1990s and included the Autism Institute, which was founded in 1993 (McCabe & Tian, 2001). However, in a recent study, Wong and colleagues (2004) found that parents of children with developmental disabilities reported a need for more support, professional help, and information about how to raise their children.
Families in China face challenges relating not just to lack of information and services, but also to stigmas regarding disabilities. A study of attitudes toward epilepsy across cultures found that attitudes in mainland China were far more negative than in other countries or regions (including western countries and Hong Kong). That study also found that family members in Hong Kong, as well as in mainland China, were often unwilling to admit to having a family member with epilepsy due to shame or fear of discrimination (Fong & Hung, 2002). Other studies have described the stigma that exists in Chinese culture toward individuals with mental illness and their families, both in Hong Kong (Tsang, Tarn, Chan, & Cheung, 2003) and in mainland China (Yang & Pearson, 2002). Within families themselves, there is often a feeling of shame about having a child with a disability. Disabilities are seen by many families as the result of something the parents, and often the mother (or her side of the family), have done, and thus they are blamed (Holroyd, 2003). Shame felt by families is evident in some school-related practices. Although China has begun to implement more inclusive schooling opportunities, many parents of children with mental retardation do not send their children to general education schools for fear of losing face if their children attend school with "normal children" (Liu, 2003, p. 95).
Even though parents often feel embarrassed about having a child with a disability, recent research about parents' relationships with children with cognitive disabilities also demonstrates that they want the best for their children. Rural families and urban parents are reported to respond to and support their children in different ways; however, both types are concerned with 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, p. 43) notes that traditional cultural beliefs that persons with disabilities are "useless burdens on society" are slowly changing as more people acknowledge that they too have a right to a high quality of life. Yan further indicates that most efforts to ensure these rights in China are currently made by independent nongovernmental organizations, and thus much work still needs to be done to universalize equal opportunities and services.
The results presented here are part of a larger qualitative study that investigated parent service provision at two institutions serving children with autism and their families: one private, nongovernmental organization (referred to as the "Autism Institute") and one state-run children's mental health center in the children's division of a large neurological and psychological hospital (referred to as the "Child Center"). Pseudonyms are used to refer to both organizations. Both organizations provide approximately 3 months of instruction to children and their parents, focusing on training parents so they can return to their homes in various parts of the country and continue to teach their children. Participants were solicited from the two locations for three reasons. First, the organizations are the two oldest and best-known centers for this population and thus attract families from across the country. second, the organizations share a common purpose of teaching parents. Finally, it was hoped that targeting one state and one private agency would provide a broader look at current service provision in China.
All caregivers of children enrolled at each site were invited to participate. At the Autism Institute, 35 out of 36 families volunteered to participate. At the Child Center, 8 out of 10 families volunteered to participate. Caregiver participants included mothers, fathers, aunts, and a grandfather. Interviews with one caregiver only were conducted with 22 Autism Institute \families and 7 Child Center families. Interviews with two caregivers were conducted with 14 families at the Autism Institute and 1 family at the Child Center. Of the interviews with two caregivers, those from the Child Center and 12 sets from the Autism Institute were interviewed together. In two of the Autism Institute families (A.I. 10 and A.I. 32), the parents were interviewed separately per parent preference and schedules.
The parents of all of the children in the study were married. Most had strong support from their extended families, as many were accompanied to the Autism Institute or Child Center by another relative, such as cousin, child's aunt, or child's grandmother. The educational and vocational backgrounds of the parents were diverse. Not all parents provided this information, but the information available from 38 families provides insight into educational backgrounds: one mother had a fourth-grade education; 3 fathers and 4 mothers had finished school after ninth grade (completing middle school); 8 fathers and 9 mothers completed a secondary-level vocational school; 2 fathers and 5 mothers had completed high school; 11 fathers and 10 mothers had completed tertiary schooling, usually 3 years after high school; 11 fathers and 7 mothers had undergraduate degrees; and one father and one mother had masters' degrees. In many of the families, fathers had slightly higher educational backgrounds than mothers.
At the time the interviews were conducted, 10 mothers and 2 fathers were not employed in order to spend time seeking services for their children (one father had been laid off and elected not to seek work in order to spend more time with his child). Of those employed, professions ranged from an opera singer to agricultural sales workers (none were rural farmers), to primary and secondary school teachers, to engineers. Although their professions and income levels varied significantly, all of the families paid large sums of money for these programs; thus they represent a portion of the population who can, either on their own or through help from friends and relatives, afford to pay for services.
In these families, all children except one were single children; one of the children had an older brother who also had a disability. In China, the family planning policy set out by the State Family Planning Commission continues, with some exceptions, to restrict most families to one child per couple (Attane, 2002). One type of exception occurs when a couple's first child has a disability; in this case, a couple may apply to have a second child. The families in this study had young children, many of whom were recently diagnosed, and thus the couples had not exercised this option yet.
Children ranged in age from 3 years 2 months to 11 years old. Before attending the programs, all of the children had been diagnosed as having "autism" (gudtt zheng) at a hospital; having this diagnosis was the only diagnostic criterion for attending. Based on informal observation by the author, the children exhibited a broad range of functioning at program entry, including varying verbal, behavioral, and academic skills. Although the male to female ratio in autism is approximately 4 to 1, the ratio for children in this study was approximately 9 males for each female. This may be attributed to the unusually high ratio of males to females that currently exists in the overall population in China, due in part to the traditional preference for boys in Chinese families, which may lead to sex-selective abortions, infanticide, or a decision not to seek services for a daughter (for more information on the complex phenomenon of "missing girls" and skewed sex ratios, see Johansson & Nygren, 1991; Johnson, 1993; and Johnson, Huang, & Wang, 1998).
The families were from cities and towns across China; the furthest traveled more than 2,000 kilometers to attend. All families lived in temporary, rented accommodations near the intervention organization they were attending. Because fami lies came from all over China and many have attended both of these organizations at some time in their children's lives, information regarding their experiences before and after attending the organizations was combined and analyzed together. Tables 1 and 2 provide more details about the participants in the study, the children, and the other caregivers who accompanied them. The final column indicates an approximate distance between participants' homes and the program, by listing the distance from the capital city in the parents' home provinces.
Semistructured interviews were conducted with caregivers and augmented with multiple informal conversations (Chinese and English versions of the interview protocol are available from the author). Interviews were guided by general questions but shaped to some extent by the focus of the interviewees (Bogdan & Biklen, 2003; Merriam, 1998).
To gain a continued understanding of issues with which the families were struggling (especially upon their return home), two follow-up questionnaires (containing open-ended questions) were sent to all participants at 1-2 months and 10-12 months after their departure (Chinese and English versions of the questionnaires are available from the author). For the first questionnaire, 34 of 43 were completed and returned, for a return rate of 79%. For the second questionnaire, two were returned unopened (families had moved, and no forwarding address was available). Of the 41 that were successfully delivered, 31 were returned, for a return rate of 76%.
All interviews were conducted and questionnaires provided in Mandarin Chinese, the participants' native language. All interviews were conducted, and the questionnaires written and sent, by the author, who is fluent in Chinese. Participants were asked permission to tape record interviews; all but one agreed. The participant who declined agreed to note-taking during the interview. The author transcribed all of the tapes, partly because of the lack of availability of a qualified transcriber in the village where the Autism Institute is located, but also because of the benefit of becoming even more familiar with the data during transcription (Merriam, 1998).
Data Analysis. Data analysis was done using the Chinese language files. Only after relevant quotations were selected for use in this article were those passages translated into English. Data were coded based on the constant comparative method (Glaser & Strauss, 1967). The study was based on broad research questions and no specific codes were developed a priori. Rather, the interview protocol questions guided the interview, and codes were generated from the data as they were collected and analyzed. Each incident or piece of information was compared with previous ones in order to give similar phenomena the same name (Strauss & Corbin, 1990). Specifically, each unit of data was given one or more codes; multiple codes indicated that the data fit into more than one category (Bogdan & Biklen, 2003). A list of the codes was kept to compare subsequent data with data that were already coded. The code list was generated during transcription of the tapes but articulated in more detail once tapes were transcribed and codes began to be physically placed next to data. This was done manually by creating a table in Microsoft Word, with data on the left and codes and subcodes on the right. (Initially, the plan had been to utilize AtlasTI software, but it did not work with the Chinese-language documents.) Once all the data were coded, all files were sorted using Word's "find" function, and data coded similarly were placed together. Grouping codes into broader categories (Strauss & Corbin, 1990) led to the generation of major themes.
Autism Institute Family Participants
Trustworthiness and Dependability of the Data. Methods used to ensure trustworthiness and dependability of the data (Lincoln & Cuba, 1985) included prolonged engagement, allowing for a deep understanding of the participants as well as for the building of trust between the researcher and the participants. Another technique used to check the trustworthiness and credibility of qualitative data was peer debriefing (Lincoln & Cuba), which provided an external check on the research, and specifically on the analysis of the data. For this research an external peer (who speaks both English and Chinese, and was familiar with the purpose of the study) was invited to provide reflection and comments on the work at three stages: while initial analyses were being typed in; after all data were coded and sorted into categories (in order to check on the themes that were emerging); and after the themes were completed. A third important technique in qualitative research is conducting member checks to allow participants to confirm the accuracy of the data conclusions (Lincoln & Cuba; Merriam, 1998; Miles & Huberman, 1994). Throughout data collection, all participants were provided with complete interview transcripts so that they could check their accuracy. (All participants were able to read the transcripts, including the participant with a fourth-grade formal education; she reported that she had been improving her literacy skills since having children.)
Child Center Family Participants
Themes generated through data analysis, and confirmed through member checks and peer debriefing, are presented here (sec Table 3 for a brief summary). This section refers to families in the following way: Each family was given a number. The families at the Child Center are referred to as C.C. 1, C.C. 2, and so forth. The families at the Autism Institute are referred to as A.I. 1, A.I. 2, and so forth.
Discrimination, Fear, and Being Alone
The first theme that emerged was the caregivcrs' perceptions of the existence of beliefs and practices that discriminate against individuals with disabilities and their families, due to a lo\w awareness and acceptance of disability and difference. Almost every family interviewed for this study mentioned their fear of being discriminated against if others found out that their child had autism (or was in some way "different" from typically developing children). This meant that it was often difficult for them to take the steps necessary to seek assistance. Some families had still not told most people from their hometown, while others reflected on their fears in earlier years but said they had made strides in opening up to friends and neighbors. Parents reported that it was difficult to try to explain autism to people who had no understanding of the condition.
Fear of, or the actual experience of, having other people laugh at them or look down on them was one recurring topic that demonstrated this first theme. One mother attributed this to the traditional Chinese saying, "In the first 10 years, observe the father and love the son. In the last 10 years, observe the son and respect the father" (Mother C.C. 2). She continued, "If you see the son has no future prospects [i.e., is good for nothing], then there's no need to respect the father. It's a Chinese tradition. So that is why some people in China, they aren't willing to let other people know their child has a sickness." Parents gave many specific examples of their fears and this phenomenon of blaming the parents. Mother A.I. 20 said, "It's as if, when other people run into this thing [having a child with a disability], maybe people where we're from will laugh, point at you behind your back." Specifically, some struggled with dealing with others who blamed the parents for their child's disability, such as Mother A.I. 13, who explained that she chose not to tell anyone that her child had autism or any difficulty other than speaking late because "It's like, people don't understand, 'How can their child be like this!?' It is as if it's the parents' fault. So I have never wanted to tell anyone." Another example is the grandfather of Child C.C. 1, who was raising his grandchild; he and his wife had chosen to move to a home far from his work unit because they felt it was too shameful to live near colleagues whose children were all typically developing.
Parent Advocacy in China: Themes and Subthemes
The lack of understanding of autism creates pressure on parents to hide it from others who may be prejudiced because they do not understand. Several parents were reluctant to use the word autism and explain its complex difficulties; they chose instead to explain that their child had a language delay. Mother C.C. 8 said, "At the preschool, I made special effort to let the teacher know. I said, 'She doesn't get along with others' [bu hequn] or whatever, 'Her language is not that good,' and asked the teacher to take special care of her." One reason for the reluctance to use the term autism is that the Chinese translation means "lonely disease," causing misunderstanding as reported by Mother C.C. 5, who generally tells people,
"He isn't good at speaking, he doesn't speak spontaneously, and he doesn't play with other children." I will introduce [my child] to them in this simple way. Maybe if [I explained] more deeply, it wouldn't be clear, I don't know . . . family members know [he has autism], are concerned about what is autism ... But in society, they don't know, schools don't know .... if I say to people, "He has autism," some people will say, "What's autism [lonely disease]?! How can such a small child be lonely?!"
Although the families in this study had at least determined to seek help for their children and thus let some people (for example, the intervention organizations they were attending) know of their children's autism, several talked about how other families they knew were even more affected by a fear of stigma and feelings of shame, would not tell anyone, and either kept the child at home or sent him or her to more rural and remote areas, often to be raised by grandparents or other relatives (interviews with Mothers A.I. 18 and A.I. 26). This was due either to issues of pride or to more practical matters such as a need to work full time and a concomitant lack of time to care for the child.
Although the phenomenon of not wanting to tell others about a child's disability exists in other countries, in China the parents' discomfort is compounded by societal pressures that continue to expect conformity and fail to understand differences in individuals, including children. The discomfort is further compounded by traditional beliefs, such as the habit of judging parents by their children's behavior and their success when they grow up. On the whole, however, many families admitted that there is no use trying to hide their children's autism because eventually, due to the unique and unusual behavior of their children, others would find out. Father A.I. 2 said,
Before, we [did not tell people that our daughter has autism]. But now . . . you should face your child squarely. Don't be afraid, don't be afraid of other people knowing, because paper can't cover a fire [it can't be hidden easily]. People will just naturally find out, because these children's behavior is unusual.
Mother A.I. 6 also talked about the futility of trying to hide a child's autism: "After all, your child is different from other children. If you keep hiding [this fact], you hide it a year, two years, how long can you hide [it]? Other people will eventually find out."
Thus, because of fear of others' opinions, parents in China have a very difficult time coming to terms with the need to search for interventions for children with autism. Advocacy is done in the face of discrimination, misunderstanding, and lack of knowledge. However, the parents in this study had overcome this fear enough to seek education or other intervention opportunities for their children. One problem that many of them had faced, though, and would continue to face, was rejection from schools.
Lack of Schooling Opportunities and Rejection
Before attending the Autism Institute or the Child Center, many of the parents had personally experienced lack of schooling opportunities for their children. Some children were rejected from schools, and some caregivers decided not to seek out opportunities because of their fear of rejection. Although China passed its Compulsory Education Act in 1986 (National People's Congress, 1986), calling for the provision of 9 years of education for children with and without disabilities, and the Law on the Protection of Persons with Disabilities in 1990 (National People's Congress, 1990), calling for education and other protections for individuals with disabilities, implementation of these laws is not mandated or complete. Thus, existence of a compulsory education law does not mean that all children are in school. As Mother A.I. 3 said when asked if children in China must go to school, "There is no 'must.' It depends on the child's condition." Thus, while at the program, all of the parents continued to worry about future schooling possibilities, noting that both general and special education opportunities are limited.
The importance of finding a school was evident in interviews with all of the caregivers, many of whom stated that their biggest worry was finding a school to accept their child. Parent A.I. 1 said, "I am most anxious about finding a place where he can go to school." Mother A.I. 6 was also worried about this, saying, "I am just afraid schools won't let him attend." Similarly, mother A.I. 11 said, "[I want him to attend] a regular school. Of the special schools there are at home ... there are no schools for autism to accept him. I don't know, I am afraid regular schools won't accept him."
Several families had already tried to send their children to school, but after a short period of time the schools had refused to continue serving the children. Mother C.C. 7 said, "When I wanted him to attend preschool, they said, try for 2 days [a 2-day trial period]. It turned out, they said, he can't stay here, and then he didn't go to preschool anymore." Similarly, Mother A.I. 21 recalled, "Many schools wouldn't accept him, because we did seek out several private preschools, and they accepted him for a few days, and then [they said] no way, he was not toilet trained, couldn't eat by himself, couldn't dress himself, so they said it wasn't working." In China, private preschools are in many cases easier to get into than state-run ones, which have more longstanding reputations, are part of the official school system, and are often of higher quality. Thus parents of children with autism seek private preschool placements, knowing that more prestigious state-run schools are less likely to accept their children. Father A.I. 24 had the same experience of rejection with his 9-year-old son: "After we went for a few times, no way, they told me in a roundabout way [that we had to leave, saying] 'Your son can't sit still during class. He gets up whenever he feels like it.' " His child had been at home ever since, even though he was already 9 years old. Mother A.I. 18 recalled not even being able to enroll,
I tried to send him to preschool, one in our home area. He was rejected twice, and I did not have the courage to try again. I went to a private preschool, and they rejected us too; they said, "We can't have your child here. We don't have specialized teachers to treat you."
A primary concern was teaching their children verbal language and basic preacademic skills, because according to parents, these skills were a prerequisite for school attendance. Mother A.I. 5 said, "He still has one more year [before he is school age]. During this year and a half time, if I teach him and he still doesn't speak, and does not follow instructions, then the school will absolutely not accept him." Like other parents, she saw preparing him for elementary school as being solely her respon\sibility; it was up to her to teach her son.
To put the problem of rejection from schools in context, it is important to note that elementary classrooms in China usually have between 40 and 70 students (or 30-40 at the preschool level), taught by one teacher. Thus teachers understandably feel unable to provide individualized support to students with special needs. As Mother C.C. 4 explained, "At the preschool the teacher wasn't very willing to accept him. So I just had an adult [either mother or grandfather] accompany him to preschool. Well, if we parents do a little more, then teachers can do a little less." Many talked about this issue, saying that because there are so many students in one class, and only one teacher, the teacher could not be responsible for a child with unique needs such as autism who would surely interfere with other students' learning.
In terms of getting into schools, another factor related to Chinese culture and society is the need to have connections in relevant positions. This could be a friend or a relative who is, for example, a government official, a school administrator, or a teacher. One mother explained that in order for a child with autism such as her daughter to attend school,
You have to seek connections. If you try to use normal channels, and say "My child should go to school here," they will definitely not accept her ... If your child is [typically developing], then the school [in the home district] must accept him. But if you are a child with autism, and you try to get in, they won't necessarily accept you. (Mother A.I. 10)
Mother A.I. 10 explained that in her case, her own mother was an administrator at a school, which was the reason her daughter could attend it. Similarly, Mother A.I. 34 was a teacher at a primary school and thus was able to secure admission for her daughter. However, personal connections are not always enough, as recalled by Aunt A.I. 8:
No [schools] accept this type of child. Where I work [teach], I talked to the principal and said, "I have a nephew, he's not very, you know [implying he is not like the other children] ..." They all know this child. I said, "I want to take him in here, have him listen to my class." The school said no way. If something happened at the school, such as he got in a fight, who would be responsible for the outcome?
Not only were parents concerned because their children had been or potentially would be turned away from general education public schools, but they also described difficulties resulting from the lack of specialized schools in their home areas that serve children with disabilities. In most major cities, there is at least one special education school for children with cognitive disabilities, where children with autism are beginning to be accepted (McCabe et al., 2005), but this is not the case in smaller cities or rural areas. Moreover, even in cities where there is a specialized school, it is not necessarily large enough to accept all children with special educational needs. Parents often talked about this problem, stating that general education schools would not accept their child, and either there were no special education schools in their area or there were none that had teachers who were skilled in teaching, or willing to teach, children with autism. Mother C.C. 3 said her son was not in school yet because "It seems where we are from there are no schools like this [offering special education for autism]. My child should be at the age of going to school." He, however, was not able to because he still could not speak or follow instructions. Mother A.I. 19 also described a situation where there was no specialized schooling at all:
In addition, we don't even have special schools [for children with cognitive disabilities] in our area ... If 2 or 3 years after we return home, our child doesn't have a really big improvement, then he won't be able to go to school. . . Because in the environment we live in, there is just no special school. Wherever you go, there is only one "normal" school, just one school at all. If that school doesn't accept you, then there's nothing you can do about it: You can't go to school.
Several parents talked about the lack of educational opportunity for their children even at the special education schools that do exist. Mother A.I. 9 explained,
Education where we live is rather backwards [luohou], regular schools don't have special classes yet, and we only finally got one special school last year. In the surrounding counties and towns there are no special schools. There is just our school [she works in the special school, which is for deaf children] and in it there is now a [recently established] class for children with mental retardation. But they don't have any specialized teachers [or] specialized instructional equipment... In that class there are just a few kids with mental retardation, and the teacher just watches over them .. . Instruction proceeds extremely slowly. If my son goes there, I am afraid it's not even as good as if I teach him at home. So he has nowhere to attend school.
Moreover, several parents who tried to enroll their children in special schools mainly for children with cognitive disabilities were turned away, due either to lack of space or to the school's unwillingness to accept a child with autism.
Due to the lack of services and educational opportunities for the children in this study, several of the parents talked about opening their own organizations once they returned home. In fact, the Autism Institute was founded by a parent in 1993, and parent advocacy, in China as in the United States, has been and will continue to be essential. For example, Caregiver C.C. 1 described his plans to work with the local China Disabled Persons Federation in his city to start the first organization there for children with autism. Mother A.I. 28 also planned to return to her parents' hometown, a more remote rural area than her current residence, and open a small preschool for children with and without disabilities. These plans would involve life changes and sacrifices, which these parents are eager to make for the benefit of their children.
Dedication of Parents
Father A.I. 2 talked about love for and devotion to one's child, quoting the Chinese expression, "Because in China, children are considered 'a piece of a mother's heart and body', that is, a piece of the mother's body that has fallen off." Indeed, many parents cited this dedication as a reason that they did not want to have a second child, but rather put all of their energy and love into their first child even though he or she had autism. It became apparent that, for this group of caregivers, their efforts could be considered all-encompassing and dedicated to helping their children. They reported facing open discrimination, a serious lack of information, and consistent lack of services. However, the caregivers were persistent.
The participants in this study were eager, upon completing their current short-term intervention program, to return home and either open their own program or provide materials and information to any teachers in local preschools who had expressed willingness (however reluctant) to serve their children. For example, Mother A.I. 3 said,
The teacher knows [that he has autism]. But the teacher also said that they don't have any materials about this, so when we return we will give her relevant materials [from the Autism Institute]. Then after we give them to her and she has read them, she will also know how to teach these children.
Mother C.C. 2 also described the important role that parents play as educators and advocates by saying:
Only if the teacher can slowly understand and I can slowly communicate it to her will the child improve. This is beneficial to my child ... I must communicate well with the teacher and cooperate with her.
A common theme among the parents was that they had looked, and would continue to look, anywhere and everywhere for services that might help their children. Given the lack of information, this often became an endless series of trial treatments with little effect. Father A.I. 32 explained his own situation:
When a person realizes their child, at age 3, age 5, realizes that their child is not normal, they will begin to ask everywhere, look everywhere. This is because for Chinese people, we do everything for our children, children arc the hope of parents ... I took my daughter to Shanghai to see the doctor [to get a diagnosis], there were no seats [on the 15-hour train ride], so I stood up and carried her the whole way. We couldn't go anywhere in Shanghai either, we had to carry her, both of us carry her, carry her on our backs, it was extremely hard on us, but what can you do? It's for our child.
Mother C.C. 4 also demonstrated the determination of parents in China, despite the lack of services and assistance in her home town. She remembered, "I inquired everywhere [after he was diagnosed] ... I became determined to find a treatment for my child. Even if I had to borrow money, I would look anywhere. I went to many places, including some center in Beijing to do Auditory Integration Training." Mother A.I. 21 also reported going all over for assistance and therapy, even before her son's diagnosis: "Even before he was sick [diagnosed], as long as someone talked about a place that could treat him, I would go anywhere. As long as someone mentioned a place, I would immediately go and try it out." Many of the parents at the short-term intervention programs already had plans to seek any available services upon returning home, including Mother A.I. 13: "I want to go back home and check it out [another program for children with disabilities] ... As long as it may be helpful to my child in some way, I will go anywhere. I will do as much as I can for him."
Like Mother C.C. 4 above, who said she would do whatever was necessary, even if it meant borrowing \money, many of the parents talked about their willingness to pay huge sums of money to help their children. Parents of children with autism incur certain expenses in any country, but this group of families was faced with the need to pay significant amounts of money for any and all assistance, as nothing is provided by the statc. Mother A.I. 19 reported that they had to pay double tuition for their son to attend a local preschool:
But what can you do? Your own child, in order to get this kind of environment [with other children], to help him practice [his social skills], otherwise, if the teacher doesn't accept you, he has no opportunity for instruction. So I figure, spending a little more is just spending a little more.
The costly nature of services is clearly difficult in a developing country such as China. The above section points to two issues. First, caregivers in this study were willing to spend all of their money, and even borrow from others, to attend the intervention programs. Thus, although some of the attendees were relatively wealthy, most were not, and attending the programs was a hardship. second, these families represent a portion of the population that can, by whatever means, afford to pay for services. Tuition of approximately RMB 4,000, plus room and board, for 3 months is significantly more than many families' salaries for the same period of time. To put this cost into perspective, consider that in 2003, 22 million people (or 6% of all official urban residents in China) were receiving social welfare funds from the Minimum Livelihood Guarantee Scheme, a program to provide a basic standard of living to cities' poorest residents (Chen, Ravillion, & Wang, 2006). Although the amount varies from city to city, as of summer 2006, in one district in Nanjing the amount given was RMB 260 per month, which is far from covering the cost of living, let alone tuition at autism programs (G. J. Zhang, personal communication, June 13,2006). Rural residents, who make up the majority of China's population, generally make even less, and unemployment is on the rise. In other words, the participants in this study represent a select group that has a way to come up with funds to purchase these services.
One final way that parents demonstrated their dedication to their children was in changing their work and lives because of their children. Advocacy and involvement was a full-time activity for many parents, who looked at teaching their child themselves as the best or only option. Mother C.C. 2 talked about losing her job and having no regrets:
After this child had this situation, I transferred positions, because of this child . .. but I missed three days of work, asked for time off. Then at that time, because the overall environment right now in China is "doing unemployment" [layoffs are high nationwide], so I didn't go for three days and they laid me off [xiagang]. At the time, I did not hesitate at all, I said, it's fine if things are a little more difficult financially, but this child has a whole life ahead of him diat I don't want to interfere with [hold him back], so for this child, it doesn't matter [my job situation].
She was later given a different position, but, she said, "In terms of becoming renowned at work, that is already impossible for me. But for this child, he is still small, I work just to earn money and raise the family." Fathers A.I. 2 and A.I. 34 also talked about their willingness to modify their job plans. Father A.I. 2 was no longer going to spend all of his time working to get promoted (as an accountant), but rather wanted to spend more time with his daughter. Father A.I. 34 quit his job as an engineer for one year to stay at home and accompany his daughter to her kindergarten class (because she would not be allowed to attend without someone's going with her). Finally, Mother A.I. 7 summed up her feelings:
[Before studying here], I was always, constantly improving myself professionally. Now I feel that I should put more time into my child. Before I felt that I was behind my classmates, that I couldn't keep up with them, it was as if I should catch up with them. Now I feel, I won't compare myself to them, their children are normal, they have a lot of time to put into professional study activities, but my child needs me to use a large amount of time to help him. I should spend a lot of time on him, anyway I will do whatever I can.
These feelings were echoed by many other caregivers in this study. Not only did they demonstrate their love for their children, but by attending the programs they had a more realistic view of what was available to them-very little. Thus, despite discrimination, rejection, and lack of support, these families were determined to do whatever possible to enable them personally to provide intervention and advocacy for their children.
The purpose of this qualitative research study was to provide readers from around the world with information about families and children with autism in the People's Republic of China. Given the importance of parent involvement in China, and the efforts and challenges of parents described in this article, it is hoped that readers will glean both new insights into the feelings and struggles of parents of children with autism, as well as raise their own awareness of the nature, extent, and limitations of services in their own countries through a comparison with China.
The director of the Autism Institute, who is a parent herself, claims, "It is only parents in China [versus parents in the United States, for example] who truly understand how essential parent involvement is." Although this may seem arrogant or unfair at first glance, when understood in the context of current Chinese society, the reasons for this simplistic yet extreme claim are clear. Parent involvement in China does not mean being a member of a team. Rather, it means advocating for one's child in the face of adversity, and often giving up one's job and other life activities to become the child's primary instructor. Parents do not have a choice of whether to participate; if they do not actively advocate for their children, and take measures to arrange their schedules to enable them to teach their children on their own, who else will step forward? Currently, there is no one else.
Although the parents in this study were willing to make enormous efforts and life changes for their children, they were also affected by traditional Chinese beliefs about family and disability. The stigma and shame attached to having a nontypical child remain major factors in families' lives. Moreover, even these caregivers, who had overcome their fears of discrimination enough to seek out the early intervention programs, were very anxious about their children's futures and about their own abilities to help their children. They wished for a school that could accept and effectively teach their child. They needed more support than a short-term intervention program could give them.
This research used a qualitative methodology of interviews and follow-up questionnaires with a select group of parents. All 43 families in the study had the financial resources (some borrowed) and knowledge to attend short-term intervention programs in a major city away from their homes. Several emphasized this fact in their interviews, saying that they sympathized with families who did not have the ability to attend such programs. Thus, the results here may not be representative of all families of children with autism in China. These families came from large cities, small towns, and even rural counties all over the country, and thus there was a range of experiences represented. However, a larger study should be done to examine the actions and beliefs of families who cannot, or choose not to, attend even short-term intervention programs. Another limitation of this study is that it only covered families up to 12 months after they attended a short-term intervention program. A longitudinal study would reveal the long-term decisions, successes, and challenges of families.
Lessons and Recommendations
It is clear from this research that efforts must be made at societal and policy levels to improve the situations of the fami lies described here. International cooperation is one level on which efforts can be made, and this article provides a foundation upon which such cooperation may be built. At a more basic level, awareness of disability within a country is the first step to understanding and acceptance. There have been many media reports about autism over the past few years, and such efforts must continue. There are too many people in China who continue to think that any child who develops in a nontypical fashion is a shazi-an idiot. This reflects a lack of education and social awareness that must be addressed. One important recommendation, which is already being implemented, is for families to share their stories with as many people as possible. Those who are willing to appear in the media and talk to professionals, government leaders, and others about their situation are key to improving awareness and acceptance of individuals with autism (or any disability). Although this has occurred earlier and to a greater extent in the United States, an important point is that continuing education of policymakers, administrators, educators, and families who have an impact on children's services and lives is essential.
Teacher education programs in China must do more to inform teachers (including those preparing to teach in general education classrooms) about autism. If teachers have some knowledge about this disability, they will be able to relate to parents with understanding, not fear and unwillingness, about educating children with autism. Indeed, a related recommendation can be made for many programs in the United States, which often prepare generalists who require further specializ\ed training when beginning to teach children with autism (Scheuermann, Webber, Boutot, & Goodwin, 2003). To better serve children with autism in China and other countries, teacher education programs should include more specialized instruction. This could directly affect the families in this study, and many others as well.
This research indicates that while short-term intervention programs are providing instruction and support to families in China today, what is needed is national-level policy and programming that will provide educational and other social services to all families, regardless of their location. Not all parents can afford to spend the time and money to return to these short-term, centrally located programs repeatedly. In terms of China's reforms since 1978, this may not seem to be the most economically desirable population to address, but effective intervention efforts would allow both children with autism and their caregivers to be more productive members of society, thus benefiting China's economic and social developments. This research serves as a call to both Chinese and international readers to consider ways of promoting more educational opportunities for all children, no matter where they live in the world.
Of course, changes in national-level policy are often achieved through grassroots initiatives. In China, many opportunities at the level of practice (schools and organizations) came about through grassroots efforts. Many organizations, including the Autism Institute, are the result of parents' efforts to create opportunities for their own children. Parents and dedicated professionals have the most to offer in terms of knowledge and motivation to provide high-quality services to families, and every new effort by parents adds to a nationwide community of knowledgeable, caring, and effective individuals. Parents who have the resources to leave their current jobs and enter this field full time have made a huge difference in the lives of children and families. Their efforts should be applauded. As parents become more willing to speak with officials or the media, their voices will be heard and heeded, slowly but surely. Grassroots advocacy for reform is more difficult in China, where national policy is often made in a top-down, nonparticipatory fashion, but the dedication of the participants in this study offers hope for future improvements in serving children with autism and their families.
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ABOUT THE AUTHOR
Helen McCa.be, PhD, is Assistant Professor of Education at Hobart and William Smith Colleges, where she is also an Affiliated Fatuity member of the Asian Languages and Cultures department. Her research interests focus on individuals with autism and their families in the People's Republic of China, as well as on policies and programs related to this population. Address: Helen McCabe, 4106 Scandling Center, Hobart and William Smith Colleges, Geneva, NY14456; [email protected]
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