by Kelsey Wu, Harvard College ‘23
ABSTRACT: Autism spectrum disorder (ASD), a developmental disorder characterized by social communication differences, repetitive behaviors, and restricted interests, affects about 1 in 59 children in the United States. While numerous studies examine the experience of parenting an autistic child in the United States, few investigate that of first-generation Chinese-American parents of autistic children. These parents often carry mainland Chinese perceptions of autism, including cultural stigma and social pressure surrounding the disorder. As a result, they face unique challenges while reconciling their Chinese impressions of autism parenting with the unfamiliar American experience. Differences in the age of diagnosis, linguistic terminologies, special education and intervention opportunities between China and the United States, and effective parental social support networks also present additional challenges for first-generation Chinese-American parents. This paper examines the challenges that this community faces in the parenting process and proposes a policy—one that utilizes the anonymity of social networks—for American social service providers. In order to facilitate these parents’ navigation of the American service system, American social service providers should cultivate more culturally effective services.
The Loneliness Disease: Challenges of First Generation Chinese-American Parents of Autistic Children
Autism spectrum disorders (ASD), or autism, affects 1 in 160 children worldwide (World Health Organization, 2017) and about 1 in 59 children in the United States (Centers for Disease Control and Prevention, 2018). Symptoms of autism emerge during early childhood and are most commonly characterized by social communication differences, repetitive behaviors, and restricted interests (American Psychiatric Association, 2013). Since autism is a life-long neurodevelopmental disorder that hinders social interaction and communication, parents of autistic children often shoulder larger psychosocial burdens than parents of typically developing children. In particular, for parents unfamiliar with the disorder and its implications, an autism diagnosis not only establishes a social divide between themselves and their child, but also evokes many questions about their child’s future, engendering emotions of denial, confusion, and frustration. In a study conducted across four Kaiser Permanente Regions serving more than 8 million Health Plan subscribers (KP Northern California, KP Southern California, KP Northwest, and KP Georgia), parents of autistic children felt that their child’s problem behavior took a toll on their family and reported concern about their child’s future (Becerra, Massolo, Yau, & Owen, 2017). Additionally, after diagnosis, these parents reckon with the difficulty of navigating American service systems, including social service, healthcare, and special education, to find effective interventions for their child. While numerous studies examine the experience of parenting an autistic child in the United States, few investigate that of firstgeneration Chinese-American parents of autistic children—for the purposes of this paper, this term refers to parents who emigrate from China to the United States and birth an autistic child in the United States. These parents face unique challenges while reconciling their Chinese perceptions of autism, dubbed as the “loneliness disease” when translated from its Chinese term 孤独症 (gu du zheng), with the unfamiliar and different American experience. Often times, these parents not only lack understanding of the disorder and evidence-based treatments offered by service providers in the United States (Wang, 2016), but also reckon with social pressure and familial isolation due to Chinese cultural beliefs about disability (Wong, 2007). Substantial differences in perceptions of autism and autism parenting between the two cultures hinder ChineseAmerican parents from gaining access to and taking advantage of the American services system. American social support programs for parents of autistic children—which typically target parents with American perceptions of autism—often do not provide effective support for Chinese American populations due to the cultural discrepancies between Caucasian-American and Chinese-American parents (Wang, 2016). The unique needs of first-generation Chinese-American parents, therefore, often remain unaddressed, leading to elevated levels of parental stress in these Chinese-American parents (Wang, 2016). For first-generation Chinese-American parents of autistic children, access to culturally effective education and training from American service providers might facilitate adjustment to the unfamiliar experience of parenting an autistic child in the United States. This paper aims to cover the unique experiences of these parents and proposes potential methods of culturally effective support for Chinese-American parents from American service providers. While this culture-specific support could apply towards many aspects of the American services system, this paper specifically targets social service providers.
Challenges of Autism Parenting in China
First, we must briefly summarize aspects of the parenting experience of parents of autistic children in China, as this impression establishes expectations for first-generation Chinese-American families regarding how the same process may unfold in the United States. While autism was first diagnosed at Johns Hopkins Division of Child and Adolescent Psychiatry by Austrian-American psychiatrist Leo Kanner in 1943 (Cohmer, 2014), the disorder has a relatively brief history in China. Dr. Tao Kuo-Tai issued the first-ever diagnosis of autism in China in 1982 at Nanjing Brain Hospital, nearly four decades after Kanner did (Huang, Jia, & Wheeler, 2013). Although Dr. Kuo-Tai published a report that same year detailing the four cases of autism he had encountered, his findings did not have an immediate or profound effect on public awareness of the disorder or autism diagnostic procedures in China. Even today, most Chinese people remain unaware of the term “autism” and lack information about the disorder (Huang, Jia, & Wheeler, 2013). The Chinese government’s refusal to publish statistics on autism diagnoses in China perpetuates this deficiency of reliable information amongst the Chinese people (Huang, Jia, & Wheeler, 2013). As a consequence, many uninformed and inexperienced parents, desperate to discover a “cure” for their children, establish their own autism intervention programs, often providing services that are not necessarily evidence-based (Huang, Jia, & Wheeler, 2013). In China, therefore, information and services for families with autistic children remain deficient, due to unreliability in data collection, an absence of government-funded services, a lack of awareness in the general public, and mainland Chinese stigmas regarding disabilities.
Varying Prevalence Estimates
Regarding the prevalence of autism in China, a single reliable estimate does not seem to exist, as statistics vary significantly across several sources. For one, the Chinese Central Government has never conducted nation-wide epidemiological studies on the prevalence of autism and, consequently, has also never released official statistics on the number of autism diagnoses (Huang, Jia, & Wheeler, 2013). In a study conducted by Medical University in Shandong Province, Wan et al. (2011) analyzed 18 community-based screening studies from mainland China with a range in rates from 2.8 to 30.4 per 10,000. The pooled prevalence of 5 of these studies produced even more variant results, with a range in rates from 7.3 to 75.3 per 10,000. These sizable differences largely result from methodological discrepancies, such as source population and diagnostic criteria, amongst investigated studies. While there exists a tremendous variance across data, there appears to be an overall increased prevalence over time, one “that is more than a simple increase in clinical awareness or an increase in care-seeking” (Wan et al., 2011). If this upward trend holds true, lower prevalence in certain regions may result from uneven progress in the autism diagnosis across various regions, revealing a lack of uniformity in autism research, awareness, and diagnostic criteria. They demonstrate the need for not only more standardized diagnostic methods, but also a more consistent dispersal of information about the disorder across China, namely through doctors, teachers, and social workers knowledgeable about autism intervention.
Lack of Government-Funded Support
Apart from a deficiency of reliable information about autism diagnosis and prevalence, another obstacle to obtaining effective autism treatment in China derives from a lack of governmentfunded support for autistic children. While the concept of special education was first introduced by Western missionaries as early as the late nineteenth century, real development of China’s special education provisions did not occur until the 1980s, with the passage of the 1986 Compulsory Education Law (Huang et al., 2012) and the establishment of the China Disabled Persons’ Federation (CDPF) in 1988 (Richardson, Sheppard, & Barriga, 2013). Monitored by China’s State Council, the CDPF officially seeks to “represent, serve, and manage” people with disabilities and conducts a “nationwide network ‘reaching every part of China’ and 80,000 full-time workers” (Richardson, Sheppard, & Barriga, 2013). While the CDPF’s goals may seem laudable on paper, its implementation lacks regulation, follow-through, and consistency. For example, while the CDPF promises distribution of governmental stipends to the disabled, only those with significant levels of disability qualify (Mooney, 2012). These stipends also vary by region, running from as little as 100 yuan (USD $15) to 600 yuan (USD $88) (Mooney, 2012). Although special education programs have grown rapidly over the past twenty years, most autistic children are excluded from schools, resulting in isolation from public life (Huang et al., 2012). Before 2006, Chinese Disability Law did not cover autism as a disability, which resulted in the inability of many autistic children to enter government-run public schools, even if the schools provided special education (McCabe, 2012). On the rare occasion that a special education school accepts a child with autism, these children eventually face probable rejection or expulsion. In response to questioning from parents of children with disabilities, schools in China often justify their exclusion of autistic children with a variety of reasons, including a deficiency of resources and trained instructors, reluctance to adjust to additional responsibilities, or the potentially negative impacts of disabled children on the learning environments of typically developing children (Richardson, Sheppard, & Barriga, 2013). A Human Rights Watch study received a number of reports from parents of children with intellectual disabilities or autism about intentional negligence from teachers due to sub-par performance (Richardson, Sheppard, & Barriga, 2013). Consequently, many autistic Chinese children—a number which is difficult to scale quantitatively due to lack of any nation-wide epidemiological study—remain unable to receive any formal schooling, which causes families to turn to private agencies and non-governmental organizations for education and intervention.
Eclectic Intervention Programs
Due to the scarcity of available government-funded services, many families with autistic children have sought help from non-governmental, private organizations for intervention and treatment. While some programs utilize evidence-based methods such as Applied Behavior Analysis (ABA) and University of North Carolina’s Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH), most intervention programs—many of which are founded by untrained parents of autistic children—involve a mix of various methods, in hopes that a combination of methods will maximize effectiveness (McCabe, 2013). Amongst many of these private organizations, quantity and speed seem to trump quality, resulting in the non-evidence-based, simultaneous utilization of multiple methods by many organizations (McCabe, 2013). Additionally, parents, often lacking knowledge about autism intervention, determine a program’s effectiveness based on the sheer quantity of different services provided. This mindset encourages many intervention programs to offer instruction through multiple methods or demonstrate the utilization of all the latest “equipment” for autism intervention, with little explanation as to how the combination of methods was determined (McCabe, 2013). This quantitative abundance of interventions, also called eclectic intervention, involves multiple transitions between activities throughout the day (McCabe, 2013). Because these private organizations rely heavily upon tuition and fees for funding, they often prioritize the parental satisfaction over quality of intervention methods, in order to sustain their sources of income. To Chinese parents of autistic children who lack understanding of the disorder and desire rapid improvement, the utilization of numerous, simultaneous interventions understandably holds appeal. As a result, many private intervention programs advertise and provide a myriad of available methodologies, tending to rotate amongst different methods in a cursory manner and pursue the latest intervention method rather than the most effective one (McCabe, 2003). While autism professionals themselves resist adopting eclectic or “fad” interventions, parents often pressure programs to provide such measures, insisting that a “comprehensive program” must be the most effective (McCabe, 2003). Consequently, while the number of autism intervention programs in China may be increasing, the effectiveness of such programs is questionable, due to monetary incentives and pressure from uninformed parents. Various academic studies have also demonstrated the ineffectiveness of employing several autism intervention methodologies simultaneously, in comparison to delving rigorously and consistently into a single type of intervention. In a 2003 comparative study investigating the effectiveness of intensive and eclectic interventions, Howard et al. investigated the effects of intensive behavior analytic treatment (IBT) and eclectic treatments for preschool-aged children diagnosed with autism. Two groups of study participants received different types of intervention treatment. Children in the IBT group received 25 to 30 hours per week of one-on-one intervention, which utilized only applied behavioral analysis conducted by instructional assistants. These children also received individualized evaluations based upon personal objectives for improvement. Children in the eclectic treatment group, on the other hand, received treatment utilizing a variety of intervention methods, including sensory integration therapy and TEACCH model activities. After each group of children had undergone approximately 14 months of treatment, Howard et al.’s study evaluated the two groups again and found substantially higher learning rates for autistic children undergoing intensive intervention. The findings of this study align with previous statements of the Institute of Medicine’s National Research Council, which recommend autistic children receive intensive and systematically planned intervention (Blenner, Reddy, & Augustyn, 2011). Because children with autism “often do not respond well to changes in routines [and] have substantial attentional difficulties” (Howard, Sparkman, Cohen, Green, & Stanislaw, 2005), eclectic programming often proves less effective than intensive intervention that is more planned and less variable.
Stigma and Cultural Implications
Chinese cultural stigma about disabilities, which originates from cultural values that differ significantly from those of the United States, presents another challenge to mainland Chinese parents of autistic children. A comparative study conducted by Fong et al. in 2002 found that mainland Chinese attitudes towards epilepsy and other disabilities were significantly more negative than those in other countries or regions, including Hong Kong and western countries (Fong et al., 2002). As explained by Fong et al., this generally more negative perception of disabilities by mainland Chinese people grounds itself in differences between Western and Eastern cultures. While stigma towards autism and other neurodevelopmental disorders exists in both Western and Eastern cultures, traditional Chinese beliefs about “face” and disability present additional stress to Chinese parents of autistic children. Tracing to Confucianist constructs, several Chinese core values reveal the perceived influence of disability on family reputation and societal harmony. One such belief states that disability and other fates considered unfavorable by society indicates moral regression or failure to complete social responsibilities by individuals in the family (Chiu et al., 2013). Chinese people, therefore, tend to perceive disability as the result of parental sin committed in this lifetime or a previous lifetime (Liu, 2001). Additionally, because Chinese cultural values emphasize filial pride and repute, stigma about disabilities reflects almost immediately upon one’s own family, often resulting in intentional distancing by other relatives from parents of autistic children in order to protect and maintain the reputation of the remaining network (Yang & Kleinman, 2008). The concept of “face” (mianzi), which represents social prestige derived from successful completion of well-recognized societal responsibilities (Hwang, 1987), and the expectation to preserve it seems omnipresent in highly collectivist Chinese societies, not only on individual levels but also on the family or community scale. Chiu et al. expressed the concept of mianzi as “honour one, honour all; disgrace one, disgrace all” (Chiu, Wong, & Yang, 2003, p. 1119). As a result of this familial extension of one’s reputation, distant relatives experience additional embarrassment, shock, and shame when a child in the family is diagnosed with autism, precipitating the subconscious or conscious detachment by extended family members from immediate relatives of the autistic child. Chinese parents of autistic children often report experiencing “self-blame or blame by others” as well as “disgrace and criticism from the community” (Chen, 2014, p. 3). In an interview-based 2009 study, Professor Helen McCabe, a specialist in the experience of autism in China, interviewed 66 families with autistic children in China and found that the three most recurring parental responses to learning of ASD diagnosis were shock, devastation, and lack of understanding (McCabe, 2009). While these reactions may not be unique to Chinese parents, parents reported that the shock of the diagnosis intensified as a result of isolation and lack of support from throughout the parenting process (McCabe, 2009). In particular, China’s one-child policy, established in 1979 in order to control the country’s rapid population growth (Dewey, 2004), limited married couples to only one child. Presented with a singular opportunity to parent a child and advance the family lineage and repute, Chinese parents hold high expectations for the family’s first and only child, even before birth. As a result, a diagnosis of autism is all the more devastating for hopeful parents. Confused and uncertain about their child’s future, these parents reckon with not only personal sentiments of embarrassment, shock, and shame, but also ostracization from relatives, friends, and other significant support systems, further contributing to parental stress (McCabe, 2009). Hence, in China, the name “loneliness disease” holds a double meaning—it serves applicable to both the condition itself as well as the parents of the autistic individual. The symptoms of the condition itself impair an individuals’ social skills, while the diagnosis of the condition serves to isolate the parents of the autistic individual from various social groups.
Challenges of First-Generation Chinese-American Parents of Autistic Children
Various discrepancies between American and Chinese social service provision and cultural perception of autism act as another challenge for first-generation Chinese-American parents of autistic children. This section seeks to delineate these potential challenges and identify their causes.
Age of Autism Diagnosis
Age at which autism is diagnosed acts as one key difference between American and Chinese experiences of parenting an autistic child. Quantitatively, the difference between the average age of diagnosis in the United States and China appears minor—the mean age of diagnosis of ASD in the United States is 3 years and 10 months (Centers for Disease Control and Prevention Department of Health and Human Services [CDC-HHS], 2007), while a study conducted by Nankai University researchers discovered that most diagnoses of ASD in China occur at 3 years and 4 months in China (Wang, Wang, Guo, & van Wijingaarden, 2018). While this 6-month gap in mean age of diagnosis between the two countries does not appear significant, measures taken to promote early autism diagnosis have differed greatly in the United States and China. In recent years, the United States has issued significant governmental efforts pushing for early autism diagnosis and intervention, which is crucial for social development of autistic children. Based upon recommendations by the American Association of Pediatrics (AAP), American pediatricians currently conduct autism diagnostic assessments for every child at 18- and 24-month well-child checkups, even if the child does not exhibit symptoms (Division of Birth Defects, National Center on Birth Defects and Developmental Disabilities, & Centers for Disease Control and Prevention, 2018). This policy suggestion has proven effective in early diagnosis of the disorder. According to a 2013 study conducted by the Center for Autism Research at the Children’s Hospital of Philadelphia, children who attended well-child checkups per the AAP guidelines received diagnoses 1.6 months earlier than children who received no well-child care (Daniels & Mandell, 2013). On the other hand, while the Chinese government has made some strides towards promoting early autism diagnosis, implementation has been largely deficient due to unclear policy definitions by the Chinese government. While China’s Outline of the Work for Persons with Disabilities aimed to promote early autism screening and support special education schools, its policy suggestions for private organizations lack detail, which complicates implementation (Zheng, Maude, & Brotherson, 2015). China’s screening systems also do not include a standardized diagnostic instrument for autism, resulting in unreliable diagnoses (Zheng, Maude, & Brotherson, 2015). Additionally, the country is deficient of pediatricians able to diagnose autism. While 1.46 pediatricians serve every 1000 children in the United States, the ratio of pediatrician to children is 0.26 per 1000 children in China (Li, Chen, Song, Du, & Zheng, 2011). Following a potentially doubtful diagnosis, the child is required to register for an identification card, which supposedly permits disabled children to enroll in government-funded Early Childhood Intervention programs (Zheng, Maude, & Brotherson, 2015). The central government has largely neglected these programs, however, leaving local governments to regulate and monitor the quality of these programs (Zheng, Maude, & Brotherson, 2015). Consequently, the quality of these programs varied drastically across regions. The most effective ones, therefore, are highly selective and typically concentrate in urban regions with high cost of living (Zheng, Maude, & Brotherson, 2015). Due to the convoluted and inefficient steps that follow an autism diagnosis, Chinese parents of autistic children are understandably reluctant to seek out diagnosis after observing irregular behaviors. The lower rate of diagnosis in China in comparison to that in America, therefore, stems from deficiency in diagnostic assessment, ineffective implementation of policy, and disinclination by parents to seek early screening for their children. As a result of differences in the age of autism diagnosis, quality of diagnostic assessment, and motivation behind seeking diagnosis, the attitudes and perceptions about early autism diagnosis held by Chinese and American parents hold stark contrasts. It stands to reason then, that children of first-generation Chinese-American parents—parents who maintain a Chinese understanding of the autism diagnostic and intervention process—have been diagnosed later than their American counterparts (Tuzon, Verma, Wu, & Yoon-Hendricks, 2017). Philadelphia-based clinical social worker Karen Krivit, who helps oversee the 8,000 special needs children in the city’s system, cite Asian immigrant children as the largest group of children receiving late diagnoses, claiming that these children “could’ve been getting services at age two getting first diagnosed at age five or six” (Tuzon, Verma, Wu, & Yoon-Hendricks, 2017). As early diagnosis and intervention are particularly important for autistic children, this delayed age of diagnosis, deriving from a lack of parental knowledge about American diagnostic processes and intervention programs, demonstrates a dire need for more accessible resources for first-generation Chinese-American parents.
Cultural Beliefs
While stigma surrounding disabilities exists in both American and Chinese culture, certain unique aspects of Chinese beliefs— association of autism with past sin and the familial extension of shame—present an additional obstacle for the transition process of first-generation Chinese-American parents of autistic children. While the immigrant parents themselves usually accept Western notions of causality such as genetics and evidence-based intervention (Chen, 2014), their family members, who mostly carry Chinese perceptions of the disorder, typically perceive disability as a “punishment for the disabled person’s sins in a past life or the sins of the person’s parents” (Liu, 2005, p. 68). As a consequence, Chinese relatives of these emigrated parents tend to neglect and isolate the immediate family members of the autistic child in order to maintain family pride or save mianzi, similar to the existent situation within China. In an interview study conducted by Brandeis University researcher Jin Yun Chen in 2014, first-generation Chinese-American parents of autistic children expressed limited support from families due to stigma or lack of understanding (Chen, 2014). Cultural scorn surrounding a diagnosis of autism in the family, therefore, often results in a desire to hide the disorder, leading to delays in diagnosis amongst Chinese-American families. Barbara Wheeler, associate professor for the University of Southern California’s University Centers for Excellence in Developmental Disabilities who focuses on racial disparities across various service systems, stated that “Asians in particular have a problem speaking up for additional services for family members with disabilities compared to whites” (Tuzon, Verma, Wu, & Yoon-Hendricks, 2017). When Californian teenager Kevin Chang was first diagnosed with autism at the age of 15, his grandmother blamed herself (Tuzon, Verma, Wu, & Yoon-Hendricks, 2017), citing Kevin’s speech delay as a result of her inability to speak English. Kevin’s situation is not unique—many Asian, specifically Chinese, immigrant families who birth autistic children blame themselves for the presence of the disorder in the family. Coupled with internal shock and embarrassment that accompanies the diagnosis (Tuzon, Verma, Wu, & Yoon-Hendricks, 2017) the stress of parenting an autistic child in a cultural environment that perceives the disorder as a product of sin becomes increasingly burdensome. This perceived sense of familial shame often results in a hesitance to officially label the child’s irregular behaviors and desire to conceal the child from the public sphere. Consequently, Chinese-American families largely fail to seek out early diagnosis and intervention (Tuzon, Verma, Wu, & Yoon-Hendricks, 2017), both of which play crucial roles in social development processes of autistic children.
Language Barriers
Another challenge that Chinese-American parents of autistic children face while navigating the American services system is the language barrier. While linguistic obstacles may seem evident, the lack of Chinese translations of commonly used technical terms in the autism field hinder communication between social service providers and Chinese-American parents. One such example is the English term “gross-motor planning.” While the term is typically used to describe large-scale repetitive movements that autistic children exhibit, “gross motor planning” does not translate directly to any term in the Chinese language (Tuzon, Verma, Wu, & YoonHendricks, 2017). Discrepancies in definition, therefore, pose opportunities for misinformation between parents and American service providers, establishing yet another barrier to understanding autism for these parents. In addition, many American agencies do not provide interpreters during appointments, therapy, or in-home visitations due to the lack of Asian and Pacific Islander (API) autism professionals, according to San Francisco-based speech therapist Dr. Betty Yu (Tuzon, Verma, Wu, & Yoon-Hendricks, 2017). In an interview with reporter Melody Cao, Dr. Roger Jou from Yale Medical School’s Child Study Center commented that these language barriers also pose a significant obstacle in communicating updated, reliable research about the disorder to Chinese-American parents. He mentioned that many of these Chinese-American parents, especially those who are in a desperate search for effective interventions, adopt interventions through word of mouth from other parents, instead of through consultations with professionals or doctors (SinoVision & Cao, 2016). This informal dissemination of knowledge fosters mistreatments, since autism displays a vast spectrum of symptoms. Interventions that demonstrate effectiveness for one child often do not produce the same results for another. Consequently, first-generation Chinese-American parents not only lack an understanding of social service opportunities due to the discrepancy between the quantity and quality of services offered in the United States and China, but also struggle with navigating American social service systems due to misinterpretation within translation. For these parents to fully and more effectively take advantage of American social service systems, there is a dire need for not only more resources in the Chinese language, but also Asian and Pacific Islander autism professionals.
Differences in Effective Social Support
Facing challenges due to linguistic and cultural divides, first-generation Chinese-American parents also struggle to locate culturally effective psychological counseling. American parental counseling, primarily catered towards European Americans, includes services that provide explicit social support, which is defined as “the advice, instrumental aid, or emotional comfort one can recruit from social networks” (Taylor, Welch, Kim, & Sherman, 2007, p. 832). These services include support groups, open discussion, and other methods that involve “active disclosure and explicit transactions of support seeking” (Taylor, Welch, Kim, & Sherman, 2007, p. 831). The sharing of personal stories and experiences, a key component in explicit social support systems, typically serve European Americans well, due to the highly individualistic and self-defining aspects of Western culture (Taylor, Welch, Kim, & Sherman, 2007). European Americans tend to maintain relationships with others with the assumption that few obligations exist (Miller, Bersoff, & Harwood, 1990). Asian Americans, on the other hand, tend to perceive their communities as interdependent groups and follow a more collectivistic point of view (Markus & Kitayama, 1991), which is especially prevalent in Chinese culture. When the individual is understood as an entity connected to the rest of the community, the needs of the individual hold less significance than and become secondary to the collective goals of the group (Kim & Markus, 1999). In order to place the needs of the social group first, therefore, individuals are expected to withhold the disclosure of personal problems and focus their energies on the greater good, with the purpose of preserving communal harmony (Kim & Markus, 1999). Because of this cultural discrepancy, therapeutic support groups that work for European Americans tend not to work as effectively for Asian Americans. In a 2007 study investigating the effectiveness of different types of social support on European Americans and Asian Americans, Taylor et al. measured stress levels of the two demographics with two different types of social support: explicit social support, which involved the explicit sharing of personal struggles, and implicit social support, which was defined as “the emotional comfort one can obtain from social networks without disclosing or discussing one’s problems vis-a-vis specific stressful events” (Taylor, Welch, Kim, & Sherman, 2007, p. 832). In contrast to explicit social support, implicit social support often serves to remind individuals of the existence of others in similar situations, rather than explicitly discussing personal issues (Taylor, Welch, Kim, & Sherman, 2007). Taylor et al.’s study (2007) found that explicit social support alleviated psychological distress for European Americans, but actually intensified that stress in Asian Americans. Implicit social support, on the other hand, worked effectively for Asian Americans and adversely for European Americans. Overall, Asian Americans seem to perceive sharing personal problems as a burden on the community, and experience increased stress in the face of negative cultural implications that come with burdening the community with personal problems. Rather, they find more comfort in the existence of silent solidarity, without the disturbance of any communal harmony. In the context of the autism community, many American support groups involve the sharing of personal struggles. As the population of Chinese immigrants is increasing around the country, support groups established by social service providers also have an increased likelihood of encountering Chinese-American parents of children with autism. Most social service organizations, however, provide explicit social support, which may fail to relieve or even worsen the stress of Chinese-American parents. The deficiency of culturally appropriate support groups for Chinese-American parents engenders more distress in the already highly stressful parenting process of an autistic child. In order to provide properly for first-generation Chinese-American parents, social service organizations should consider employing implicit rather than explicit support when establishing support groups and other social support programs.
Policy Proposal
In light of the obstacles that first-generation Chinese-American parents of autistic children face, American social service providers for families with autistic children, particularly those located in regions with significant Chinese-American presence, should utilize more culturally sensitive services. In particular, this policy proposal suggests the formal integration of social networking into the programming of American social service providers. Through the usage of anonymous social networking, social service providers may be more equipped to interact with Chinese-American parents of autistic children, ultimately facilitating the transition towards more meaningful, face-to-face intervention with pediatricians, child development specialists, social workers, and other parents of autistic children. Specifically, this policy proposal consists of the following steps: 1. Formal integration of anonymous social networking into the programming of social service providers 2.Informational seminars, distributed via social networking, to encourage parents to attend well-child checkups and adopt a strength-based perception of autism 3.Referral to face-to-face intervention with local autism professionals and community providers Although social network based initiatives have already taken effect in communities of families with autistic children, most social service organizations have yet to formally integrate social networking into their service provisions, which Chinese-American parents, in particular, would benefit from. The Charles B. Wang Community Health Center, a non-profit organization centered around providing more accessible and culturally effective health care to New York City’s Asian-Americans, is one organization that has adopted social networking as a form of outreach. The Health Center’s Child Development and Special Needs team established an official WeChat group, designed to provide a platform for support and discussion amongst Chinese-American parents of autistic children. The team saw positive results, discovering that parents of autistic children were “more willing to share online anonymously” (Cao, 2016). While the notion of increased personal sharing under the realm of anonymity appears intuitive, the concealment of identity serves particularly well for Chinese-American parents. Carrying mainland Chinese cultural perceptions of the disorder, these Chinese-American parents often lack familial support throughout the parenting process and desire to hide their child’s diagnosis. Parents, therefore, feel significantly more comfortable sharing personal stories and struggles through anonymous means. By simply adding parents into nameless social networking forums, ChineseAmerican parents would be receiving implicit social support, which was found to be more effective in alleviating psychological stress for Asian Americans than explicit social support (Taylor, Welch, Kim, & Sherman, 2007). For Chinese-American parents, utilizing social networking forums—ones that allow users to comment and discuss at their own convenience and volition—instead of faceto-face parental support groups would more effectively provide psychological comfort, as many Chinese-American parents do not find relief in sharing personal stories with others (Taylor, Welch, Kim, & Sherman, 2007). Rather, these forums would offer social support in the form of knowledge that other parents also tackle similar issues and problems, which is a form of implicit social support, as defined by Taylor, Welch, Kim, and Sherman. These forums would also offer an easily accessible channel for exchange of advice amongst parents, if they choose to do so. With the implementation of this policy, social service organizations will be encouraged to establish a presence on social media platforms—WeChat, in particular—for their respective special needs communities. WeChat, a Chinese social media app with more than a billion monthly users (Kharpal, 2019), most likely provides the most direct channel of communication to first-generation Chinese-American parents, especially in Chinese-American heavy regions. These community groups, in turn, will provide seminars held by API trained autism professionals, who are trained and wellversed in Chinese cultural differences and can most effectively facilitate the transition process. Through electronic dispersion of information about American social service systems, these WeChat groups will provide an anonymous, and therefore more discreet, avenue of informational support for parents who hesitate to disclose their child’s diagnosis in support groups. The dispersal of information via social media, however, is merely a means to achieve the goal. The program ultimately aims to bridge the gap between Chinese-American families and real clinicians by encouraging Chinese-American families to seek out professional face-to-face help. To effectively prepare clinicians—particularly ones serving regions with dense Chinese-American populations—for these inperson meetings, American social service organizations should provide formal cultural training programs for autism professionals, including special education teachers, pediatricians, school-based psychologists, and speech pathologists. These training programs would offer clinicians historical, social, and political context of the perspectives on autism held by Chinese-American parents, thereby facilitating conversations around the process of obtaining information about the American social service system, including the acquisition of an Individualized Educational Plan, as well as transitioning to a new cultural norm.
Informational seminars will also emphasize the significance of autism advocacy—on the part of the parents—in the parenting process. Because Chinese-American parents, in particular, often desire to hide their children’s irregular behaviors from the public sphere, an emphasis on an advocacy-based mindset rather than one that invites shame and embarrassment would potentially alleviate the stress of the transition between Chinese and American experiences of parenting autism. One pertinent ideological movement that has emerged from the autistic community is neurodiversity, a concept that “neurological differences like autism and ADHD are the result of normal, natural variation in the human genome” (Austin & Pisano, 2017). In other words, neurodiversity aims to influence society to perceive children with autism as representing a different but valuable approach to problem-solving. The notion of neurodiversity is closely tied to strength-based approaches, as opposed to deficit-based approaches, to autism intervention. According to an infographic designed by Harriet Cannon, Disability Advisory Team Manager at the University of Leeds, some common strengths of autism include attention to detail, deep focus, strong observational skills, absorption and retention of facts, and novel approaches to problem-solving (Cannon, 2018). In recent years, an increasing number of corporations, including Microsoft and SAP, have begun to recognize the strengths of autistic individuals in the workplace, implementing measures that promote the hiring of neurodiverse individuals (Austin & Pisano, 2017). While these recruitment programs are relatively young, they have not only yielded increased levels of workplace productivity and innovation, but have also encouraged a broader definition of neurodiversity— one that also encompasses strength-based evaluations of those who are not on the spectrum (Austin & Pisano, 2017). Parental adoption of a strength-based mindset such as one demonstrated by these corporations and in the tenets of neurodiversity, therefore, would potentially impart more hope in these Chinese-American parents for their children’s futures. Because first-generation Chinese-American parents derive their perceptions of autism from a culture that encourages concealment of the diagnosis, this notion of building upon strengths in an autistic individual may serve to promote autism advocacy amongst Chinese-American parents. The interspersion of these ideas about strength-based perceptions of autism via WeChat seminars, during which parents of autistic adults and directors of neurodiverse vocational programs would be invited to discuss childhood interventions and present opportunities, aims to transform parent perspectives on careerplanning for autistic individuals. By helping parents perceive autism differently and focus on the strengths of their children, these neurodiversity seminars seek to reshape the way parents search for their children’s extracurricular opportunities. After adopting a strength-based mindset, parents would likely attempt to pursue the improvement and development of their children’s existing talents, rather than focus on finding the “correct” or “most suitable” interventions—a notion that seems to be ingrained in Chinese perceptions about autism. To provide for parental desires to seek strength-based interventions, social service organizations that partake in social networking programs would then provide contact information for face-to-face services and local community providers and encourage parents to seek in-person consultation and guidance. Because the final objective of this policy seeks to bridge these connections between Chinese-American parents and local community providers, this policy proposes that local autism centers access Chinese-American families through anonymous social networking, especially in regions with significant ChineseAmerican populations. To evaluate the effectiveness of the utilization of social networks in informing Chinese-American parents about American service provisions and encouraging Chinese-American parents to seek face-to-face intervention and advocate for their child, anonymous surveys will be issued to various parties of the implementation process, including the parents themselves, social service providers, and seminar presenters. These surveys invite parents to offer feedback freely in regards to the capability of social networks to provide not only accessible information but also stress relief in the process of navigating the unfamiliar American services system. The survey will also acquire a more quantitative measure of success through Yes/No questions about whether or not social networking influenced parents to seek out local autism professionals and community providers for face-to-face guidance. Through an examination of the cultural and societal background from which Chinese-American parents of autistic children derive their perceptions of autism, the need for culturally tailored social services for these parents has become urgent and necessary. While more comprehensive steps can and should be taken, this policy proposal provides a first step to creating more culturally considerate environment in programs of social service providers for first-generation Chinese-American parents of autistic children.