The Loneliness Disease

Dubbed as the “loneliness disease” when translated from its Chinese term 孤症 (gu du zheng), autism spectrum disorder (ASD) is a neurodevelopmental condition characterized by communication deficits, repetitive behaviors, and restricted interests, and affects about one in 59 children in the United States. Since ASD is a life-long condition, parents of children with ASD often shoulder large financial burdens. On average, the medical expenditures of families with autistic children were 4.1 to 6.2 times greater than those with neurotypical children.

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 face unique challenges while reconciling their cultural perceptions of autism. Often times, these parents reckon with social pressure and familial isolation due to Chinese cultural beliefs about disability. Substantial differences in perceptions of autism between the two cultures hinder Chinese-American parents from gaining access to and taking advantage of the American services system, which caters itself towards European-Americans.

In order to facilitate these parents’ navigation of the American service system, American social service providers should formally integrate neurodiversity in their parental support programs.

Struggles of “Face”

Chinese cultural stigma about disabilities, which originates from values that differ in some aspects from those of the United States, presents a challenge to mainland Chinese parents of autistic children.

While stigma towards autism and other neurodevelopmental disorders exists in both Western and Eastern cultures, traditional Chinese beliefs about “face”— mianzi in Chinese, meaning social prestige derived from successful completion of societal responsibilities — and disability create additional stress for Chinese parents of autistic children.

Originating from 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 indicate moral regression or failure to complete social responsibilities by individuals in the family. Traditional Chinese culture, therefore, tends to paint disability as the result of parental sin committed in this lifetime or a previous one.

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 their reputation in the remaining network. Associate Professor Chiu at the City University in Hong Kong, who specializes in mental health, expressed the concept of mianzi as “honour one, honour all; disgrace one, disgrace all.”

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. They precipitate the subconscious or conscious detachment by extended family members from immediate relatives of the autistic child. Chinese parents of autistic children often report experiencing blame as well as “disgrace and criticism from the community.”

CK Lee, president of Bay Area non-profit Friends of Children with Special Needs (FCSN), observed this phenomenon through FCSN’s provision of guidance and resources for their 800+ member-families—most of whom are first-generation Chinese-American parents. Specifically, in an interview with the HPR,  he expressed that many Chinese families are “shy to tell everyone [about the diagnosis]” and “afraid to lose face,” consequently preventing them from “actively [seeking] help from the outside.”

In an interview-based 2008 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 autism diagnosis were shock, devastation, and lack of understanding. 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 throughout the parenting process.

In addition, China’s one-child policy was established in 1979 in order to control the country’s rapid population growth. Up until 2015 when the policy was terminated, married couples were limited 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.

Implicit and Explicit Social Support

Facing challenges due to cultural divides and familial stigma, first-generation Chinese-American parents struggle to locate culturally tailored counseling in the United States. 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.” These services include support groups, open discussion, and other methods that involve “active disclosure and explicit transactions of support seeking.” The sharing of personal stories and experiences, a key component in explicit social support systems, is more suited to European-American cultural norms, due to the highly individualistic and self-defining aspects of Western culture.

Asian Americans, on the other hand, tend to perceive their communities as interdependent groups and follow a more collectivistic point of view, 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. 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. 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 explicit social support and implicit social support. Defined as “the emotional comfort one can obtain from social networks without disclosing or discussing one’s problems vis-a-vis specific stressful events”, implicit social support serves to remind individuals of the existence of others in similar situations, rather than the explicit discussion of personal issues. 

Taylor’s study 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 ASD 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 autistic children. 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.

Neurodiversity and Advocacy

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, service providers should formally integrate neurodiversity and autism advocacy — on the part of the parents — in parental support programs. Autism advocacy, in this context, refers to self-advocacy, a movement that pushes for equality and rights for autistic individuals through policy and community organizing.

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, the concept that “neurological differences like autism and ADHD are the result of normal, natural variation in the human genome.” In other words, neurodiversity aims to influence society to perceive autistic children 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 Leed, 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.

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. 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. From the perspective of parents of neurodiverse individuals, these career programs not only provide more optimism for the future, but also inspire strength-based thinking. Fueled by positive psychology, thinking of ASD in terms of neurodiversity involves a mindset shift for some parents, and facilitating that process would benefit these parents and their perceptions of autism.

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, therefore, could transform parent perspectives on extracurricular opportunities and career-planning for their children.


Image Credit: Unsplash/Michał Parzuchowski 

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