Unheard but Uncompromising: Quiet Politics and Parental Resistance Among Chinese Immigrant Families of Autistic Children in the U.S

Abstract

Background: Chinese immigrant families of autistic children in the United States face intersecting barriers related to language, culture, immigration, and fragmented service systems. Yet little is known about how Chinese immigrant parents engage in advocacy or how such efforts relate to disability and human rights. Methods: This qualitative study draws on in-depth interviews with fourteen Chinese immigrant parents of autistic children across multiple U.S. regions. Data were triangulated with analyses of publicly recorded advocacy events and parent-produced textual materials. Reflexive thematic analysis was used to examine motivations for advocacy, advocacy practices, and structural, linguistic, and cultural constraints. Results: Advocacy rarely emerged as an intentional or identity-driven pursuit. Instead, parents were compelled into advocacy through institutional exclusion, service denial, and unmet care needs. Parents engaged in diverse forms of advocacy, including migration, negotiation within institutions, information translation, community-building, and grassroots organizational leadership. Cultural norms shaped advocacy strategies, producing quiet, relational, and collective forms of action often overlooked in dominant rights-based models. Conclusions: Interpreted through a disability justice lens, parental advocacy functions as burdened and unequally distributed labor compensating for systemic failures. Findings underscore the need for institutional reforms that reduce reliance on families’ capacity to fight for access, dignity, and care.

1. Introduction

Asian Americans are the fastest-growing racial minority group in the United States over the past two decades [1]. During the same period, the number of children diagnosed with autism spectrum disorder (hereafter “autism”)—a neurological and developmental disability characterized by variations in social, communicative, and behavioral patterns and abilities [2]—has also increased steadily. In the US, about 1 in 31 children (3.2%) are diagnosed with autism. Notably, among children of Asian descent, the prevalence of autism diagnosis is higher, with 5.4% of Asian children—equivalent to 1 in 19—being diagnosed with autism. According to data documented by the U.S. Department of Education’s Office of Special Education Programs (OSEP), in the 2019–20 school year (ages 5–21), among all students with disabilities in the US, Asian American students with disabilities were 2.37 times more likely to be identified with autism [3].

Despite this higher prevalence of autism diagnosis and higher risk ratio of autism identification, the lived experiences of autistic individuals and families in Asian American communities have been relatively underexplored compared to white families and other racial and ethnic groups [4]). As Khalil et al. [5] note, compared with Black or African American (hereinafter referred to as Black) and Hispanic or Latino populations, Asian participants are often excluded from analyses due to small samples.

Moreover, Asian American children are less likely to access timely and appropriate autism-related services and supports compared to children from other racial and ethnic groups due to a combination of internal and external barriers. Internal barriers include cultural stigma, linguistic challenges, and limited autism-related legal and clinical knowledge, and concerns about social reputation [4,6], while external factors include limited availability of culturally and linguistically responsive services, fragmented systems of care, and provider bias or misunderstanding [5,6,7].

For Chinese immigrant families in particular, the largest subgroup within the heterogeneous Asian population, experiences of autism diagnosis, service navigation, and long-term care are shaped by intersecting structural, linguistic, and cultural factors [5,7,8]. In addition to barriers experienced by all families, such as long waitlists and poor care coordination—Chinese immigrant families face unique challenges related to cultural beliefs, denial, and stigma that shape their access to services and supports in the community, educational system, and the healthcare system [8].

For example, patient–provider communication and relational trust are highly valued by Chinese immigrant parents in autism diagnosis and treatment [8]. Yet, even in the presence of bilingual/bicultural interpreters, linguistic translation often fails to bridge bigger cultural differences in the etiology of autism, parental expectations of care, and treatment goals [7]. These barriers create difficulties for parents and service providers in discussing concerns and treatment recommendations toward mutual agreement and in sharing goals. They also create difficulty for parents to understand the diagnosis [9]. When parents’ limited autism knowledge is compounded by educational materials that are poorly translated or culturally incongruent, their interpretation of autistic symptoms can be further filtered through cultural beliefs [5]. For instance, Joshi et al. [8], report that Chinese immigrant parents often view the autism diagnosis as a product of external environmental factors, such as Western influence, inadequate early stimulation, or temporary developmental delay, often believing that the child will “outgrow” these challenges. These cultural beliefs, alongside pervasive stigma surrounding disability within Chinese communities, can delay diagnosis, service uptake, and sustained engagement with needed support systems.

As parents navigate the complex process of understanding autism, additional challenges emerge in accessing appropriate services and supports. In the United States, access to medical, educational, governmental, and social supports for autistic individuals is frequently mediated through advocacy, particularly parent advocacy, reflecting the country’s highly individualistic structural context [10]. Parents are often expected to actively negotiate service systems, assert their child’s needs, and challenge institutional decisions in order to secure appropriate supports [11,12,13].

For Chinese immigrant families, however, engagement in the U.S.-style advocacy may be shaped by culturally rooted values and norms, including Confucian traditions that emphasize respect for authority, deference to professionals, and social harmony [14]. These values may contribute to discomfort with or reluctance toward advocacy practices commonly encouraged in the United States such as bringing a legal advocate to Individualized Education Program (IEP) meetings, formally contesting school decisions, writing to legislators, or engaging in collective or policy-level advocacy. As a result, Chinese immigrant parents may face additional barriers in navigating systems that implicitly assume familiarity with and comfort in adversarial or rights-based communication or advocacy approaches.

Models of advocacy often implicitly privilege visibility, confrontation, and rights-based claims—assumptions that may not align with immigrant families’ cultural values, migration histories, or risk calculations. Disability Justice scholarship challenges these narrow definitions by emphasizing interdependence, collective care, and the structural conditions that render some forms of advocacy more accessible or safer than others [15]. Although this study was not analytically guided by a Disability Justice framework, its principles offer a useful lens for interpreting culturally situated, relational, and non-confrontational forms of advocacy that may otherwise be overlooked or mischaracterized as disengagement.

Despite the aforementioned challenges, a small but growing number of parental advocates have emerged within Chinese immigrant communities, with evidence of their efforts appearing primarily in gray literature—such as community reports, organizational websites, and advocacy group materials—despite the cultural, structural, and linguistic barriers described above (e.g., [16]). However, to our knowledge, no peer-reviewed studies have systematically documented either the motivations underlying advocacy or the specific ways in which it is enacted within this often-overlooked population.

A deeper understanding of how Chinese immigrant parents navigate—and at times creatively overcome—structural, linguistic, and cultural barriers to secure services for their autistic children, whether successfully or not, can provide critical insight into how parental advocacy within this population is shaped by the intersections of race, culture, language, disability, and neurodivergence across educational, medical, social, and governmental domains. Such insights not only make visible the advocacy strategies and constraints experienced by an often marginalized community but also inform the development of mechanisms and supports that can strengthen parental advocacy in other diverse communities facing similar intersectional challenges. In doing so, this work can support researchers, practitioners, and policymakers in more accurately recognizing and responding to the unmet needs and unfulfilled rights of families whose voices are frequently marginalized within existing service systems.

2. Research Questions

• What factors motivate advocacy among Chinese immigrant parents of children with autism?
• What are the forms of advocacy?
• How do Chinese immigrant parents of autistic children navigate structural, linguistic, and cultural barriers when advocating?
• What factors shape and constrain parental advocacy practices among Chinese immigrant families of autistic children?

3. Methods

3.1. Study Design

This project uses a multi-source qualitative design to explore how Chinese immigrant parents of autistic children develop and enact advocacy roles across personal, community, and institutional contexts. The study draws on constructivist and critical disability frameworks, with attention to the ways cultural background, immigration histories, and structural barriers shape parents’ advocacy trajectories. To capture advocacy as both lived experience and public practice, we collected data from three sources: in-depth interviews with parent advocates, publicly recorded advocacy events, and textual materials they produced as part of their ongoing advocacy work. Using multiple sources enables triangulation [17] and enriches the understanding of how parents articulate their goals, communicate with institutions, and construct meaning around their advocacy journeys.

3.2. Participants and Recruitment

Participants were fourteen Chinese immigrant parents of autistic children residing in the United States who self-identified as engaging in advocacy on behalf of their children and, in some cases, their broader communities. All parent participants had been involved in sustained advocacy efforts to improve services, access, or systems affecting autistic children and their families. All participant names reported in this manuscript are pseudonyms used to protect confidentiality.

In the Chicagoland area, where collective or organized parental advocacy was less prominent among interviewed parents, two additional participants were included who served as case workers providing family support and service navigation for Chinese immigrant families of autistic children. These individuals were included to contextualize local advocacy conditions and to capture system-facing perspectives on family advocacy in settings with more limited community-level mobilization.

Although participants’ advocacy roles varied, all had engaged in ongoing efforts to address unmet needs within medical, educational, social service, or community systems. Some participants focused primarily on advocating for their own children through individualized interactions with schools, healthcare providers, or service agencies. Others occupied broader public-facing roles, including participation on governmental committees or advisory boards, leadership within local community groups, or coordination of parent networks. A subset of participants had founded grassroots initiatives or nonprofit organizations in response to perceived gaps in existing services or supports.

Participants were recruited through community-based networks, caregiver support groups, professional contacts, and snowball sampling. Inclusion criteria required Chinese heritage or an immigration background, current or past caregiving for a child diagnosed with autism, and experience engaging in advocacy activities over time. All participants provided informed consent, and study procedures were approved in accordance with Institutional Review Board requirements.

All Chinese parents we interviewed are foreign-born. Although Asian Americans are frequently portrayed as high-income, many of the Chinese immigrant families in this study lived in urban Chinatown neighborhoods and have limited English proficiency. A few of them are even undocumented. Although many of them hold advanced degrees, a few parents expressed the language gap as a challenge even when they have lived in this country for two to three decades. Table 1 presents more detailed demographic information of the participants

Table 1. Participant Characteristics.

Characteristics	n (%) or Mean (SD)
Parent/Caregiver Characteristics
Gender
Female	9 (64.3%)
Male	5 (35.7%)
Average Age	55.1 (6.3)
Location (U.S.)
West Coast (CA, WA)	5 (35.7%)
Midwest	4 (28.6%)
East Coast/Northeast	3 (21.4%)
South	2 (14.3%)
Average Years in the U.S.	22.7 (11.6)
Reason for immigration
Study abroad/education	10 (71.4%)
Family immigration	1 (7.1%)
Child-related immigration	3 (21.4%)
Education level
Bachelor’s degree	3 (21.4%)
Master’s degree	4 (28.6%)
Doctoral degree (completed)	6 (42.9%)
Doctoral degree (incomplete)	1 (7.1%)
Child Characteristics
Number of autistic children per family
One	12 (85.7%)
Two	1 (7.1%)
Three	1 (7.1%)
Child age (years)	19.1 (4.9)
Age at autism diagnosis	4.2 (3.4)
Child sex
Male	11 (78.6%)
Female	3 (21.4%)

3.3. Data Sources

3.3.1. Interviews

Each participant completed a semi-structured interview lasting approximately 60 to 90 min, conducted via Zoom. Interviews explored early caregiving experiences, involvement with diagnostic and educational systems, motivations for advocacy, pathways into leadership, cultural and linguistic considerations, emotional labor, and visions for system change. Interviews were audio-recorded, transcribed, and verified for accuracy by the research team.

3.3.2. Public Advocacy Events

To situate parents’ experiences within broader contexts, we also analyzed two publicly available recorded events. The first public event happened in May of 2024 titled “Breaking the Silence on Untreated Autism Among Asian American Children and Their Families” hosted by the Stanford Center for Asian Health Research, Stanford School of Medicine. This event included the following panelists: Dr. Lawrence Fung, Assistant Professor of Psychiatry and Behavioral Sciences at Stanford University, Anna Wang, Co-founder and Vice-president of Friends of Children with Special Needs, and Kelly Ko, a Parent of Asian American Child with autism. All three panelists from this event are parents of individuals on the spectrum with lived experience. The second event happened in December of 2024, titled, Advocacy in the Chinese Autistic Community held by the Chinese American Association for Autistic Community and the Pui Tak Center, a community-based organization serving Chinese immigrant families in Chinatown and the surrounding area. These events are conferences organized to address autism service disparities in Asian immigrant communities. The recordings provided insight into the broader discourse, rhetorical strategies, and community-level concerns circulating within Chinese immigrant advocacy spaces. Rather than serving as comparative individual-level data, these recordings helped situate interview findings within a larger sociocultural and organizational context.

3.3.3. Textual Traces of Advocacy

In addition to verbal and recorded data, we examined textual materials created by parent advocates as part of their ongoing work. These “textual traces” included items such as public statements, letters to policymakers, blog posts, informational guides, or social media posts related to service gaps or community support. These documents offered a longitudinal perspective on how parents articulated concerns, mobilized communities, and shaped their advocacy narratives over time. Only materials shared voluntarily or publicly were included in the analysis.

3.4. Analytic Approach

We conducted a reflexive thematic analysis following Braun and Clarke’s [18] reflexive iterative approach. Analysis began with multiple rounds of familiarization, during which research team members reviewed interview transcripts, recordings, and documentary materials to develop an initial understanding of the dataset. Open coding was then used to identify early patterns related to advocacy motivations, barriers, strategies, identity development, emotional experiences, and system-level interactions. Codes were compared across data types to explore areas where private narratives aligned or diverged from public messaging and written materials.

As coding progressed, the team met regularly to cluster related codes into preliminary categories. These categories reflected recurrent patterns, including navigating diagnostic uncertainty, encountering institutional mistrust, developing culturally grounded advocacy strategies, and taking on community leadership roles. Through continued refinement and discussion, categories were shaped into interpretive themes capturing the complexity and evolution of parents’ advocacy pathways. Reflexive memos were used throughout to document analytic decisions and to examine how the researchers’ positionalities—including linguistic and cultural backgrounds—influenced interpretation.

3.5. Credibility and Trustworthiness

Multiple strategies were incorporated to enhance the credibility and trustworthiness of the study. Triangulation across interviews, public events, and documentary traces strengthened the depth and breadth of findings. An audit trail documented coding decisions, theme development, and methodological adjustments. Team-based coding and regular debriefing helped refine interpretations and mitigate individual bias. When appropriate and feasible, preliminary thematic summaries were shared with selected participants to confirm resonance with their lived experiences. The combination of these techniques supports the dependability and transferability of the final themes.

4. Results

4.1. Theme 1. Triggers of Advocacy: When and Why Parents Begin Advocating

Across interviews, Chinese immigrant parents consistently described advocacy not as an initial goal, but as something they were forced into through repeated encounters with exclusion, neglect, or system failure. Advocacy emerged when parents reached a point where passive compliance no longer protected their children.

4.1.1. Disagreements, Disputes, and Institutional Exclusion

For many parents, advocacy was triggered by direct conflict with schools or service systems. These moments often involved disagreements over placement, discipline, or service eligibility, and were experienced as deeply destabilizing. Yuan, a mother who gave up her nurse practitioner career in China to move to the US for better school services, described how advocacy began when her child’s school attempted to push him out due to challenging behaviors:

“After we immigrated to the U.S., the first school my child attended told us that because he has autism, he couldn’t stay there. But we knew our rights—if I don’t sign the papers, they can’t force us out. So we stayed for another year.”

Her resistance escalated into retaliation, including a report to child protective services: “Later, the principal accused us of child abuse and reported us to—just because we refused to transfer.” Although the family eventually transferred to a suburban school district with more resources, the experience marked a turning point in Yuan’s understanding of the system: advocacy became necessary not to gain additional services, but to defend basic access and dignity.

Similarly, Chengyan, a mother who moved to the US undocumented for the better special education services, recalled daily struggles with school personnel that culminated in physical and emotional exhaustion: “In 2021–2022, because of behavioral issues, the teacher often made excuses to send my son home—saying he was sick when he wasn’t. I had to take the bus every day in the snow to pick him up.” These disputes revealed to parents that silence or cooperation did not ensure fairness, and that advocacy was often required simply to prevent harm.

4.1.2. Recognition of Resource Gaps and Inadequate Services

Another major trigger was parents’ realization that available services were insufficient, fragmented, or culturally inaccessible—particularly during transition points such as adolescence or post-high school adulthood.

One father, who is a prominent policy advocate, reflected on the moment advocacy expanded beyond his own child:

“After my son graduated from high school, I realized how few employment opportunities there were for autistic youth. That’s when I began paying attention to the situation of Chinese immigrant families in the U.S.”

Parents described these realizations as slow and cumulative. Dan, a father who gave up his career as a research scientist to become a Board-Certified Behavioral Analyst, reflected on his early years navigating services: “At that time, we didn’t understand anything. The doctors told us where to go, and we just went. Later, we realized it wasn’t about being compliant—the system itself had problems.” The recognition that individual effort alone could not fix structural gaps often marked the shift from private caregiving to advocacy.

4.1.3. Benefiting from Other Parents’ Support

Many parents described advocacy as something they learned indirectly, through observing or receiving help from other parents. These moments revealed that collective knowledge—rather than formal instruction—often initiated advocacy. For example, Ling, who benefited from the parent-to-parent peer support in her school district, continued to serve as one of the Chinese parent peer support leaders in her district, which had a sizable number of Chinese students on the spectrum. She traced her advocacy orientation to early observations of collective caregiving and support within American school communities. Recalling her high school graduation day, she described how witnessing other parents’ involvement shaped her understanding of volunteering and advocacy long before she became a parent herself.

Furthermore, parents frequently referenced WeChat groups, informal conversations, online forums in Chinese, and peer guidance as pivotal in helping them understand their rights, available services, and possible strategies. Advocacy thus emerged relationally, through shared survival, rather than as an individual choice.

4.1.4. Life Crisis

Yi identifies his own health crisis as the primary “triggering point” that catalyzed his shift from passive awareness to active advocacy. On his child’s ninth birthday, Yi experienced a severe medical emergency that resulted in overwhelming pain and an emergency room visit. Although he was a successful and deeply committed university professor, the episode precipitated what he described as an “existential crisis,” prompting him to question—for the first time—the significance of his academic career, grants, and publications. He came to see his professional accomplishments as negligible in comparison to the urgent and unresolved question of who would care for his child should he become unable to do so.

Prior to this event, Yi characterized himself—and many parents of autistic children—as “frogs in lukewarm water,” gradually adapting to mounting challenges by treating them as chronic conditions to be endured rather than problems demanding deeper, structural solutions. The crisis disrupted this mode of coping, compelling him to confront his child’s future care as an immediate concern rather than a distant possibility. In response, Yi began systematically researching long-term care options (e.g., group homes), participating in local disability-related committees, and ultimately co-founding advocacy initiatives within the Chinese immigrant community.

As a single father raising an autistic daughter, Yi also envisioned a sustainable care model that integrates senior care with support for individuals with disabilities—an approach he hopes to help establish.

4.2. Theme 2. Forms of Advocacy: How Parents Advocate

Parents engaged in a wide range of advocacy strategies that extended far beyond formal complaints or policy engagement. These forms were shaped by local context, immigration status, cultural norms, and family resources.

4.2.1. Relocation and Migration as Advocacy

One of the most consequential forms of advocacy involved migration itself. Several families described relocating—sometimes multiple times—in search of more inclusive educational and service environments.

Yuan explained that her decision to immigrate to the U.S. was driven by school exclusion in China:

“When my child was diagnosed around age six in China, the doctor said schooling would be difficult. My son was rejected by many schools. I read on WeChat that foreign countries were more inclusive, so we decided to come to the U.S.”

Another parent (from CAAAC’s recorded event) described a transnational trajectory involving multiple countries: “My child was born in Mexico. After surgery for tongue-tie, his speech didn’t improve. I felt there were no resources there, so in 2017 we came to the U.S.” Similarly, Hu, the father of a teenage boy on the autism spectrum, gave up his academic career at a university in China, while Siyuan stepped away from her role as the founder of a large business in Singapore and relocated to the United States to secure better educational opportunities and long-term prospects for her teenage son.

Across interviews, families described moving across provinces, school districts, countries, and immigration systems—often at great personal cost—as a form of advocacy enacted through mobility rather than protest.

4.2.2. Speaking up and Negotiating Within Systems

Some parents engaged directly with schools and providers by speaking up during IEP meetings, disputing placements, or requesting accommodations. However, these efforts were often described as emotionally draining.

A social worker noted: “Some parents fight hard during IEP meetings—for example, over how many minutes of therapy their child gets.” Parents emphasized that such advocacy required not only knowledge of rights, but stamina, language proficiency, and emotional resilience. One mother (from CAAAC’s recorded event) described requesting translated materials: “I asked the school to translate IEP materials into Chinese. They only translated one-third. When I asked why, they said the government only funds one-third.” This partial accommodation symbolized for parents the limits of formal inclusion.

4.2.3. Blog Writing, Evidence-Based Information Translation

Two of the parents used writing as a form of their advocacy. Siyuan, who gave up her successful business career to migrate to the US with her son for better services and support, started writing about twice exceptional children (gifted but also with special needs) on Chinese social media in the hope that the information could help other parents of twice exceptional children like her teenage son. She is also in the process of writing a book in Chinese for publication on this topic, aiming to educate more parents about this issue. Another father runs a WeChat public account that has a wide Chinese audience. As a scientist, he saw the mixed information on autism and felt that “the biggest need…was that information was chaotic and mixed… someone needed to do science translation. I felt that was the number one priority”.

4.2.4. Information Seeking, Private Purchases, and Self-Funding

When public systems failed, parents often turned to private solutions, such as purchasing private insurance, paying out-of-pocket for therapies, or independently researching interventions. These actions were framed not as a preference but as a necessity. Parents described advocacy as creating access where none existed, even when it meant bearing the cost themselves.

4.2.5. Building Community: Support Groups, Nonprofits, and Grassroots Innovation

Several parents moved beyond individual advocacy to collective action by forming parent groups, support networks, or nonprofit organizations. Chi, a mother of two autistic children who could not complete her PhD degree due to the burden of care, described founding a grassroots organization pairing autistic youth with typically developing adolescents: “You can’t just ask people to help autistic kids—it has to be win–win.” Chi’s creative approach is to organize volunteers who are typically developing high schoolers to support children on the spectrum with their social needs. Started as a grassroots nonprofit serving only one community in Southern California, her organization now serves over 11 communities in the region.

Huan, a mother who ended her career in tech consultancy to start her own transition-focused nonprofit for transition-age youth, began by applying for small grants and serving on local governmental committees. She then ventured into larger grants to support her independent living skills training for youth with autism. Rarely seen in parental advocacy, Huan also highly supports self-advocacy for youth and young adults on the spectrum, promoting their autonomy and dignity. Another mother, Juan, a realtor, described how she started off wanting to donate money to the community, but noticing the lack of adult support, she invested the money to build a nonprofit that runs an adult day program. Similarly, one of the co-founders of Friends of Children with Special Needs (from Stanford online event), who is also a parent of an individual with autism, shared how the nonprofit serving 1500 families started with a group of 10 Asian parents, “sharing tears and joys, and experiences in how to raise our children”.

Dan, a father, professor, and prolific writer, began his advocacy journey by sharing a 10,000-word blog on Chinese social media that documented the services his autistic daughter receives. The article was well-received, and a few local Chinese parents reached out to him for support. They then started a parent peer support program that also creates an inclusive space for local Chinese children on the spectrum and their caregivers.

These organizations emphasized mutual benefit, cultural fit, and sustainability. Diverse ways of building community also reflect parents’ professional strengths, lived experiences, and their understanding of what is the most critical need for their children and others in the community.

4.2.6. Policy and Public Advocacy

A smaller subset of parents engaged in policy-level advocacy through advisory boards, public testimony, or collaboration with local officials. For example, both Huan and Lim are from New York. They both serve on advisory committees that lead developmental disability services and grant supports at the state level, providing critical input on what issues Chinese immigrant families of children on the spectrum face. In Huan’s case, she successfully secured funding to support the operation of her transition-focused nonprofit organization by applying for state government grants. Lim, a father serving on the state’s developmental disabilities council, shared that when he first started visiting Capitol Hill during Autism Acceptance Month, it was just him and his son. It later became a family event, including his wife and his young adult daughter. “Later on, more and more Chinese families joined me. They see my pictures and posts on Chinese social media and see the potential benefits of policy change.”

Although we asked all parents about their involvement in policy-level advocacy, only those from New York state reported being more engaged in policy advocacy. Others may have some opinion on what systemic changes need to happen, but are not involved in policy advocacy.

4.3. Theme 3. Barriers to Parent Advocacy: Why Advocacy Is Limited or Delayed

Despite extensive advocacy efforts, parents described numerous barriers that constrained whether and how they could advocate.

4.3.1. Language Barriers and System Knowledge

Limited English proficiency and unfamiliarity with U.S. systems made advocacy inaccessible for many families. Parents emphasized that understanding rights, procedures, and timelines required sustained learning—often after harm had already occurred.

Jing highlights the linguistic limitations faced by first-generation immigrant parents born in the 50 s or 60 s. “We are the first generation of immigrants,” she said, “Although our English is okay, it hasn’t reached that level [to argue with the government], and we don’t have the energy to do it well. We need young people to propose these things.” Her words also reveal that for immigrant parents, the barrier isn’t just vocabulary—it is the exhaustion of energy reserves, which they have already poured into survival.

Yi, a father, identifies information access as one of the core barriers for Chinese immigrant families. He notes that information about local context and available resources is not straightforward and requires active searching: “If you don’t go looking for information yourself, you actually can’t find it … it’s not easily found”.

4.3.2. Culture Stigma-Fear or Reluctance to Stand out

Cultural stigma surrounding disability and deeply rooted norms discouraging confrontation significantly shaped advocacy behaviors. One parent explained:

“We were taught from a young age not to be the one who stands out (出头鸟).”

Jing highlights a generational characteristic that acts as a barrier to “fighting” for rights: “Because we are from that generation (50 s/60 s), we don’t like to file lawsuits…We feel that compared to what we had in China, what we have here is already a lot…”

4.3.3. Cultural Stigma-Challenges to Accept Disability

A social worker described how stigma delayed action: “Many parents think their child will get better when they grow up. They say, ‘No one in my family has this problem.’ So they keep delaying.” Yi notes that many parents feel “shameful” and avoid taking their children out in public to prevent them from being “tagged” or stigmatized. He observes that many parents use various ways to “escape” or avoid the reality of a diagnosis, including not taking their child to the doctor for treatment or diagnosis. He even shares a personal example regarding his child’s mother (his ex-wife), who “never wanted to accept the situation” and preferred to believe the child would suddenly “get better” through alternative methods like acupuncture rather than seeking professional medical help. Instead, Yi himself views a parent’s pride as a form of advocacy against cultural stigma: “Many parents feel shameful and avoid taking their [autistic] children out… but for me, I don’t care. I feel proud… I am willing to take her to various occasions”. The denial and resistance to diagnosis that Yi observed is a salient theme shared by many other interviewees.

Dan notices a cultural gap in how autism is perceived compared to more visible disabilities: “Autism is perceived as if there’s something wrong with the parents… like you didn’t raise them well”. Dan suggests this may have made it harder for parents to accept and advocate for their child compared to conditions like Down Syndrome, which are seen as clearly genetic and “not the parent’s fault”.

4.3.4. Emotional, Temporal, and Financial Burden

Parents described advocacy as exhausting labor layered on top of caregiving, employment, and migration stress. One father broke down when describing his wife’s sacrificed career as a nurse in China while another mother paused repeatedly when recalling daily winter commutes to retrieve her son from school (from CAAAC recorded event). These pauses, tears, and hesitations reflected advocacy as emotionally costly, not empowering by default.

After the diagnosis, Dan and his wife decided that one of them had to switch careers to manage the autism intervention their child needed. His wife transitioned from scientific research to the IT field to better support the family financially, while he took on the primary responsibility of caring for the child. Eventually, he quit his job as a research scientist to become a BCBA.

For some, advocacy is not a choice, but as a full-time, physical occupation that requires “sitting in” at offices: “I just sat there [at the school district office]. I wrote my demands on a piece of paper and taped it to the wall… telling them who I wanted to see and how long I had waited. The principal came out and threatened to call the police… but I told them, ‘I didn’t break the law… I just need help.”

Many parents emphasize the relentless time commitment required for advocacy. As Mei states, “You must persist. Even if they ignore you, delay you… you have to go. I copied the email to his boss… to the Department of Case Management… telling him, ‘You must reply.’… If you persist, you will eventually get a relatively fair result.”

4.3.5. Non-Reciprocal Policy Environments

Parents from most states, except one, described a lack of reciprocity in their policy advocacy work. Advocacy, in these contexts, often yielded little return, reinforcing feelings of isolation and futility. In less receptive political environments, parents described policy advocacy as aspirational but difficult to reach any productive policy changes. For example, Yun, a mother who founded an employment-focused non-profit organization, noted that the lack of a self-directed service model results in high costs for agency vendors providing employment services. In her son’s case, the job coaches are not well-educated (high school graduates), lacking knowledge of autism. They are providing “too many” services without pushing for her adult son’s independence. Her son was offered a full-time job at a large e-commerce company. However, because her son’s job coach cannot be there on weekends and evenings, Yuan and her son were forced to decline the offer. Instead, he works at a grocery store for only 9 h a week, with a job coach present for the entire 9 h. In Huan’s words, “The theory is so beautiful, but when it comes to support for the family, it is so little. The employment support vendors always say my son needs one-on-one support, so they can continue to get funding.” She attempted to write letters to local legislators but did not receive a response.

5. Discussion

5.1. Disability Justice Framing—Advocacy as Burdened and Unequally Distributed Labor

Although this study did not apply a disability justice framework as an a priori analytic lens, the findings strongly resonate with disability justice principles that center interdependence, collective care, and the unequal distribution of survival labor under ableism and racialized state neglect [19,20]. A disability justice framing shifts the interpretive center of gravity: rather than treating advocacy as a marker of parental empowerment, civic engagement, or individual “resilience,” it highlights how advocacy becomes necessary because systems are structured to ration access, offload responsibility onto families, and normalize avoidable harm. From this perspective, advocacy is not simply a choice; it is a form of survival work—often undertaken under conditions of constraint, uncertainty, and exhaustion. Parent advocates in this study assumed the burden of care and created their own “care webs” [20] to hold the space for their children to survive and thrive.

5.2. Advocacy as Survival Work Under Structural Failure

Across interviews, parents’ advocacy trajectories were rarely planned or identity-driven. They were reactive, escalating in response to institutional exclusion (e.g., school rejection, incomplete language access, service denial, or forced removals). Disability justice calls attention to how “access” frequently operates as a moving target: rights exist formally, but their realization depends on one’s capacity to continuously interpret policy, mobilize documentation, negotiate with professionals, and absorb conflict. The study’s findings illustrate that parents were compelled to create access through relocation, persistent dispute navigation, community service-building, and self-funding, not because systems invited participation, but because systems produced gaps that threatened children’s safety, development, and dignity. This reframing underscores that the central story is less about exceptional parental advocacy and more about the institutional conditions that make such labor routine.

5.3. The Unequal Distribution of Advocacy Labor

A disability justice lens also clarifies that advocacy work is not evenly distributed: it is stratified by language, immigration pathway, socioeconomic resources, and familiarity with U.S. bureaucratic norms. Parents described needing to learn systems “from scratch” while simultaneously caregiving, working, and navigating stigma. In practice, this meant that the ability to secure services was often contingent on resources that were unevenly available: English proficiency to contest decisions, flexibility to attend meetings, money for private evaluations or insurance [12], and social capital to identify knowledgeable allies. These patterns align with disability justice critiques of “rights-on-paper” models that presume an equal capacity to claim rights. Here, advocacy appears as both a right-claiming practice and a burdened responsibility—an obligation imposed on families by structural design.

5.4. Cultural Stigma and the “Quiet Politics” of Advocacy

The quiet politics of advocacy reflects how advocacy itself is shaped by cultural values and stigma [21]. In Minwoo Jung’s [22] article on queer organizing, the concept “quiet politics” was coined to describe quietly mobilized queer community in Singapore that negotiate and navigate with neoliberalism, queer politics, and the authoritarian government that persecutes homosexuality. The concept of quiet politics, we argue, fits well with the advocacy approaches emerged among Chinese parents’ advocacy that seek to balance community cohesion, dignity and social reputation, and the needs and rights of their children on the spectrum. Parents’ narratives showed how cultural expectations around restraint, “face” (面子) or one’s social reputation, and not “standing out” shaped both the decision to advocate and the strategies deemed acceptable. Parents calibrated visibility to protect their children from backlash, preserve fragile school relationships, and minimize risks in environments they experienced as nonreciprocal. This perspective helps expand what counts as advocacy by recognizing indirect forms—information-sharing, peer mentoring, mutual aid, and service creation—as meaningful resistance to ableist and exclusionary systems.

5.5. Emotional and Financial Costs as Evidence of Systemic Offloading

Parents’ accounts also make visible the emotional and financial extraction embedded in service access. Migration decisions, repeated relocations across districts or countries, career sacrifice, and the cumulative toll of conflict were not incidental background details; they were central mechanisms through which families compensated for institutional gaps. Disability justice foregrounds how this kind of “compensatory labor” is a hidden subsidy to systems: when families self-fund therapies, purchase private insurance, or create community programs to fill public gaps, they are effectively underwriting state and institutional failure. The emotional texture in parents’ narratives—exhaustion, prolonged pauses, fear, and grief—underscores that advocacy is frequently traumatic labor, especially when it involves repeated confrontation with professionals who hold more power in their children’s access to care. This pattern is consistent with prior research showing that parents who engage in sustained advocacy for their children’s rights frequently report cumulative frustration and exhaustion as their children reach adulthood, shaped by prolonged involvement in advocacy processes and persistent uncertainty surrounding long-term planning and future care [23,24].

5.6. Interdependence and Collective Care as a Counter-Structure

At the same time, the study documents how parents built counter-structures through interdependence: WeChat groups, peer guidance, and community mentoring often functioned as alternative infrastructures of care and knowledge translation. The relational trust and informal networks often outweigh formal services, explaining why parents actively construct alternative support systems grounded in peer connection and mutual dependence [25]. Disability justice places collective care at the center of survival under oppression; the findings similarly suggest that advocacy was sustained not only by individual persistence but by networks that redistributed expertise, normalized help-seeking, and offered emotional containment. Notably, parents described becoming advocates after receiving support, illustrating an ethic of reciprocity (“I was helped; later I helped others”) that aligns with disability justice commitments to collective access and community-led problem solving.

5.7. Implications: Shifting Responsibility from Parents to Systems

Interpreting advocacy as burdened and unequally distributed labor has direct implications for policy and service design. First, it challenges models that implicitly assume parents should function as case managers, legal advocates, translators, and intervention coordinators to secure basic supports [25]. Second, it underscores the need for systems to reduce reliance on parental persistence as the mechanism of access—through proactive language access, culturally responsive engagement channels, standardized pathways to evaluation and services, and protections against punitive responses when parents assert rights. Finally, a disability justice framing suggests that “family engagement” should not be narrowly operationalized as parents’ attendance at meetings or compliance with professional recommendations; it should be understood as a structural responsibility to create conditions where families do not have to fight simply to obtain adequate support. Existing literature has documented interventions on parent involvement in special education (e.g., school-home communication, parent participation in IEP) demonstrating promising effects [26,27]. To further extend their impact to culturally and linguistically diverse families, future implementation should take into account the diverse backgrounds of families and draw upon the rich community cultural and relational wealth they bring [25]).

6. Limitations

Several limitations should be considered when interpreting the findings of this study. First, the sample consisted of Chinese immigrant parents who self-identified as advocates and who were connected to community networks. As such, the study likely underrepresents families who are more isolated, have fewer resources, or are unable or unwilling to engage in advocacy due to linguistic, immigration-related, economic, or emotional constraints. The advocacy practices documented here therefore reflect the experiences of parents who, despite significant barriers, had some capacity to act—suggesting that the burden of advocacy may be even greater, and more constrained, among families not captured in this study. Furthermore, the study relied on retrospective self-reports through qualitative interviews. Parents’ accounts were shaped by memory, reflection, and the passage of time, particularly for long advocacy trajectories spanning childhood through adulthood. While this allowed for rich life-course perspectives, it may also introduce recall bias or selective emphasis on particularly salient events. However, the consistency of themes across participants and regions supports the credibility of the findings. Although this study includes participants from multiple regions of the United States, it does not aim to provide a systematic comparison across states or policy regimes. Differences in local political receptivity, service infrastructure, and Chinese community size emerged organically in participants’ narratives but were not the focus of a formal comparative analysis. Future research could more explicitly examine how state-level policies and funding structures shape advocacy pathways. Additionally, because we did not collect data on the regions of China represented by parent advocates, we were unable to examine regional variation in parent advocate representation. Finally, while the discussion draws on disability justice scholarship as an interpretive framework, the study was not originally designed or coded using a disability justice lens. The framing offered here is therefore analytic and conceptual rather than methodological. Future studies could explicitly integrate disability justice principles into study design, analysis, and participatory methods, including greater involvement of autistic individuals themselves.

7. Conclusions

This study provides one of the first in-depth, multi-regional examinations of advocacy practices among Chinese immigrant parents of autistic children in the United States. The findings reveal that parent advocacy is not a singular or uniform phenomenon, but a set of culturally and contextually adaptive practices shaped by structural exclusion, cultural stigma, and uneven access to resources. Parents engaged in advocacy through migration, negotiation, community building, service creation, policy engagement, and transnational knowledge exchange—often in response to systemic failures rather than as a matter of choice. As the late disabled activist Patty Berne observed, such creative forms of advocacy are born out of “collective struggle, drawing upon the legacies of cultural and spiritual resistance within a thousand underground paths, igniting small persistent fires of rebellion in everyday life” [19].

Importantly, the study highlights that advocacy functions simultaneously as a right-claiming practice and a form of burdened labor. Parents assumed significant emotional, financial, and relational costs to secure supports that should have been accessible without prolonged struggle. Cultural norms emphasizing restraint, social harmony, and not “standing out” shaped how advocacy was enacted, giving rise to forms of quiet politics—relational, indirect, and collective practices that balance cultural values with the pursuit of access, dignity, and long-term care. These strategies do not reflect disengagement, but rather contextually grounded forms of resistance that are often overlooked in dominant advocacy frameworks privileging visibility and confrontation.

Interpreted through a disability justice lens, these findings call for an expansion of how advocacy is understood and valued in plural societies where diverse cultural logics shape political action. Rather than treating advocacy as a singular, rights-based script, recognizing quiet politics underscores the need to attend to culturally situated ways families navigate risk, power, and responsibility. At the same time, celebrating parental persistence as resilience risks obscuring the structural conditions that make such exhausting labor necessary.

Ultimately, recognizing Chinese immigrant parents’ advocacy as both necessary and costly underscores the urgency of building systems that do not depend on families’ capacity to fight. Creating equitable and inclusive supports for autistic individuals and their families requires shifting responsibility from parents to institutions—and honoring advocacy not as an expectation, but as a signal of unmet needs and systemic failure. Ultimately, recognizing Chinese immigrant parents’ advocacy as both necessary and costly underscores the urgency of building systems that do not depend on families’ capacity to fight. Creating equitable, inclusive supports for autistic individuals and their families requires shifting responsibility from parents to institutions—and honoring advocacy not as an expectation, but as a signal of unmet needs and systemic failure.