Significant racial disparities exist in the diagnosis and interventions of autism spectrum disorder (Maenner et al., 2020; Zablotsky et al., 2019). Autism in this study is defined by a clinical DSM-5 diagnosis that occurs in childhood and is marked by deficits in social communication and symptoms in restricted and repetitive behaviors. Children diagnosed with autism also have significantly higher healthcare utilization and costs and worse access to care (Tregnago & Cheak-Zamora, 2012). Racial-ethnic minority children, including Asian American children, often experience delays in receiving an autism diagnosis, leading to missed opportunities for early interventions that are crucial for positively influencing developmental trajectories (Valicenti-McDermott et al., 2012). Asian American children are less likely than their peers from other racial groups to receive services that meet their developmental needs, such as speech, occupational, or behavioral therapies (Data Resource Center for Child and Adolescent Health, 2020). More specifically, autism prevalence among Asian, Black, and Hispanic children aged 8, increased by at least 30% from 2018 to 2020, highlighting improved identification across racial and ethnic groups (Maenner et al., 2023). One potential implication of this increase in diagnosis for children of color is that racial gaps appear to be closing (Wiggins et al., 2020). For those diagnosed with autism, prevalence was lower among White children (24.3%) compared to Black (29.3%), Hispanic (31.6), and Asian Pacific Islander children (33.4%) While prevalence is higher among racial ethnic minority children, there are still delays in receiving diagnoses among children of color. For instance, there are still disparities in diagnostic timing as there are continued findings that Black children receive their first diagnosis of autism later than White children (Baio et al., 2018).
Black youth with autism has historically been diagnosed 3 years later than the national average (Constantino et al., 2020). Parents of children with autism play a critical role in seeking early interventions, which could help mitigate these racial disparities. While existing systematic reviews (Angell et al., 2018; Khalil et al., 2025) highlight barriers encountered by racial-ethnic minority families, few studies have specifically examined the help-seeking barriers faced by Asian American parents in obtaining autism services for their children. Given the unique cultural, linguistic, and systemic challenges that Asian American families may face, it is essential to study this group specifically to develop targeted interventions and support systems that address their distinct needs. This qualitative study aims to explore these experiences and identify the challenges and barriers unique to Asian American families.
We ground our research in the conceptual Model of Treatment Initiation (MTI; Turner et al., 2016), developed from Anderson’s health utilization model, which identifies four key factors—accessibility, availability, appropriateness, and acceptability—that either facilitate or impede access to mental health services among racial-ethnic minority families. Research on the help-seeking experiences of racial-ethnic minority families of children with autism has consistently supported the relevance of the MTI framework, as it applies to autism care (Khalil et al., 2025). Accessibility, which encompasses logistical barriers such as transportation difficulties, long wait times, and the geographic availability of services, often serves as a primary barrier to accessing adequate care (Turner et al., 2016). Racial-ethnic minority families frequently report facing transportation challenges, limited clinic locations, and socioeconomic constraints that exacerbate delays in diagnosis and treatment (Wagner et al., 2021). These barriers are compounded by socioeconomic constraints faced by many racial-ethnic minority families, making it particularly difficult for parents to navigate complex healthcare systems (Stahmer et al., 2019). For children with autism, transportation challenges—like relying on public transit, which can overwhelm children due to crowding and noise—are particularly significant (Rezae et al., 2021).
Availability focuses on the shortage of linguistically and culturally competent healthcare providers, as well as the underrepresentation of racial-ethnic minority providers, which is a pervasive issue for families from diverse backgrounds. The absence of providers who are attuned to the cultural contexts and unique needs of these families often leads to delayed diagnoses and inadequate treatment (Turner et al., 2016). Many parents report that healthcare providers lack the cultural sensitivity required to accurately diagnose their children with autism and address specific concerns, fostering feelings of mistrust and dissatisfaction with the services received (Burkett et al., 2015; Dababnah et al., 2018). Asian American caregivers also experience barriers finding providers who can communicate in the family’s native language when navigating autism services (Kim & Lee, 2022). Consistent availability of knowledgeable interpreters—specifically trained in developmental disorders—during healthcare appointments was also a challenge for many families (Sakai et al., 2019). This lack of availability is particularly critical in autism care, where timely and accurate diagnoses are essential for early intervention and support.
Appropriateness refers to how different cultural groups conceptualize mental health symptoms and the implications this has on the type of treatment they seek. The cultural appropriateness of treatment takes into account the alternative spiritual, psychological, or biological explanations that racial-ethnic groups may have for distress (Turner et al., 2016). For example, in explaining the etiology of autism, immigrant mothers have reported factors such as pregnancy or delivery complications, genetics, older parental age, vaccines, maternal health, contaminated food (e.g., pesticides and additives), reduce social and language opportunities in the United States, and even divine intervention as possible causes (Gordillo et al., 2020; Sakai et al., 2019). In a study exploring the perception of developmental disabilities in New Delhi, India, false explanatory beliefs of how developmental disabilities persist (Lockwood Estrin et al., 2023). Consequently, many racial-ethnic minority families may delay seeking services, missing critical windows for early intervention. Furthermore, many standard treatments are developed with middle-class White culture in mind and often fail to address the diverse cultural understandings held by racial-ethnic minority individuals. This mismatch can lead to a lack of trust in the healthcare system and result in premature dropout from services (Davenport et al., 2018)
Acceptability refers to the challenges racial and ethnic minority groups face in acknowledging the need for treatment and concerns about being misunderstood by the mental health community (Turner et al., 2016). Factors like social relationships, stigma, and discrimination appear to affect the acceptability of mental health treatment. This element addresses a dimension not fully explored in Anderson’s original health utilization model (Turner et al., 2016). Stigma related to seeking treatment related to developmental disabilities is particularly pervasive in many racial-ethnic minority communities, often leading to reluctance in seeking professional help. For example, Chinese grandmothers reported a loss in status among their community and feelings of shame after learning of their child’s developmental disability (Huang et al., 2020). In another instance, Black and Hispanic mothers have reported that fathers or extended family members often dismissed or minimized concerns about their child’s developmental issues, resisting an autism diagnosis and delaying intervention (Blanche et al., 2015; Crais et al., 2020; Dababnah et al., 2018). In addition, families may fear being judged or stigmatized not only by healthcare providers but also by their own cultural communities, creating additional layers of resistance to accessing services. Some caregivers reported that they would hide a child that behaved differently from their cultural community (Zuckerman, Sinche, Cobian, et al., 2014; Zuckerman, Sinche, Mejia, et al., 2014). These concerns can exacerbate already existing barriers, as parents may hesitate to pursue necessary interventions, worried that healthcare professionals may not fully grasp the cultural context of their concerns or that seeking treatment could bring shame or negative perceptions within their community. Consequently, the acceptability of care becomes a crucial factor in determining whether families will engage with the healthcare system or remain isolated from potential support.
Despite the growing literature documenting the challenges faced by racial and ethnic minority families in accessing autism care, few studies have specifically explored the help-seeking barriers faced by Asian American families. The two notable exceptions—Jegatheesan et al. (2010) and Sakai et al. (2019)—focused on South Asian Muslim and Chinese immigrant parents, respectively. These studies underscored the significant roles that extended families and cultural communities play, which may be relevant to the broader Asian American population. For example, Jegatheesan et al. (2010), through in-depth interviews and observations with three South Asian Muslim families, found that extended family members attributed the child’s autism to various causes, such as the mother not adhering to religious practices or consuming prohibited foods during pregnancy. This placed a heavy burden of guilt on mothers, further complicating their help-seeking journey. Similarly, Sakai et al. (2019), who interviewed 16 Chinese immigrant parents seeking care from a medical center in one of the largest Chinatowns in a metropolitan U.S. city, reported that many within the Chinese community viewed autism as a temporary condition. The belief that the child would eventually outgrow autism reflects a broader misunderstanding of the disorder as a lifelong neurodevelopmental condition and highlights the persistent influence of cultural beliefs, even in diaspora communities.
However, the existence of only two studies is insufficient to capture the diverse experiences within the Asian American population. Asian Americans represent a highly heterogeneous group with varying ethnicities, acculturation statuses, migration histories, cultural and religious backgrounds, and socioeconomic conditions. For example, while many Asian cultures emphasize collectivism and respect for authority, the ways these values manifest in healthcare decision-making can vary widely across subgroups. East Asian families (e.g., Chinese, Korean, Japanese) may prioritize harmony and indirect communication, which could make them less likely to confront providers (Pun et al., 2018), whereas South Asian families (e.g., Indian, Sri Lankan) may bring religious or spiritual interpretations into their understanding of autism, shaping how and when they seek care (Jegatheesan et al., 2010). Additionally, linguistic diversity and migration histories contribute to varying levels of familiarity with and access to the U.S. healthcare system, further complicating the help-seeking process for these families. One significant challenge is the impact of the “model minority” stereotype. This stereotype, which portrays Asian Americans as universally successful, can obscure the real struggles that families face when navigating autism diagnoses and services. Providers may assume that Asian American families are more capable of managing their children’s developmental challenges without external support, leading to less engagement or tailored intervention from healthcare professionals (Truong et al., 2022).
Additionally, the COVID-19 pandemic coincided with a significant rise in anti-Asian sentiment and hate crimes, which may have created additional barriers for Asian American families seeking autism care (Dababnah et al., 2022). Heightened feelings of fear and anxiety surrounding discrimination could have made Asian Americans more hesitant to engage with healthcare systems (Lee & Weiss, 2024), particularly if they were already grappling with language barriers or cultural mistrust. Although there is limited direct evidence linking anti-Asian hate to decreased access to autism care, it is possible that these concerns contributed to delays in seeking diagnosis or treatment during the pandemic (Dababnah et al., 2022). For instance, in a study of 25 Asian American caregivers of children with developmental disabilities, some families expressed concerns about discrimination during the pandemic (Dababnah et al., 2022), indicating how broader societal dynamics, such as racial discrimination, can intersect with healthcare access.
In light of these complexities, further research is needed to better understand the unique barriers faced by different Asian American subgroups in accessing autism care. This would not only provide a more nuanced understanding of the challenges but also help inform the development of culturally sensitive interventions that can improve service delivery for all Asian American families. To address these research gaps, this study aims to examine Asian American parents’ perceptions of their help-seeking experiences through a qualitative, emic approach by studying a culture from the perspective of those inside. By elucidating the barriers to autism treatment that Asian American families experience, the findings can inform educational and healthcare policies to improve treatment access for Asian American children with autism.
Method
Procedure
Participants were recruited online through snowball sampling and advertising across multiple healthcare settings, autism-related organizations, and social media platforms between May 2021 and February 2022. The inclusion criteria were: (1) identifying as Asian or Asian American residing in the U.S., (2) being the primary caregiver of a child aged 3–17 with autism, (3) being over 18 years old, (4) speaking English, and (5) having a child currently or previously engaged in autism interventions. No other inclusion or exclusion criteria were employed. We aimed to recruit 10 to 15 participants (Hennink & Kaiser, 2022) using purposeful sampling to ensure diversity in our participant sample such as the child’s age, country of origin, generational status, household income, and parent’s education. Interested participants filled out an online demographic survey, including a consent form. To ensure diversity in our sample, we sought participants with different ethnicities first, then various generational status second, and lastly the age of the child. The final sample included ten participants with interviews ceasing upon reaching thematic saturation. Participants were compensated $25 USD via an Amazon gift card. The study received approval from the Purdue University Institutional Review Board (2021–616).
Participants
All ten participants were biological parents, including nine mothers and one father. The participants’ countries of origin included East Asia (seven participants), South Asia (two participants), and Southeast Asia (one participant). All but two participants were first-generation immigrants, with the remaining two being second-generation. The parents ranged in age from 28 to 55 years. Their religious affiliations included Christianity (four participants), Hinduism (two participants), Islam (one participant), Buddhism (one participant), and Catholicism (one participant), with one participant not specifying their religion. Educational levels varied significantly: three participants held doctorate degrees, two had master’s degrees, two had bachelor’s degrees, one had an associate’s degree, and one had some high school education. Household income levels ranged from below $25,000 to over $250,000 annually, with six participants reporting income levels between $25,000 and $100,000, and four participants earning above $100,000. The children with autism ranged in age from 3 to 16 years, with the average age of diagnosis being around 3 years. Most children were diagnosed before reaching school age. The sample included predominantly male children, with only one female child represented. Parents were spread across multiple U.S. states, including New York, California, Indiana, Washington, Maryland, and Minnesota. For more particpant details please reference Table 1.
Table 1
Participant Demographic/Informational Table
Participant Pseudonym | Country of Origin | Participant Generational Status | Religion | Participant Age | State | Child Age | Child Sex | Age of Autism Diagnosis | Relationship | Education | Household Income | Number of Children |
|---|---|---|---|---|---|---|---|---|---|---|---|---|
Lila | Malaysia | 1st | Christian | 55 | New York | 16 | Male | 2 | Bio Mother | Associate’s | $0-$25,000 | 1 |
Amy | Taiwan | 1st | Christian | 44 | Indiana | 6 | Male | 1.5 | Bio Mother | Doctorate | $175,000-$200,000 | 3 |
Alissa | China | 2nd | Christian | 34 | New York | 4 | Male | 2 | Bio Mother | Master’s | >$250,000 | 2 |
Lim | China | 1st | Buddhist | 35 | New York | 8 | Male | 2 | Bio Mother | Some High School | $25,000–$50,000 | 2 |
Aminah | Kazakhstan | 1st | Muslim | 37 | Washington | 5 | Male | 3 | Bio Mother | Doctorate | $25,000–$50,000 | 2 |
Rachel | China | 1st | Catholic | 50 | Maryland | 13 | Male | 5 | Bio Mother | Master’s | $125,000-$150,000 | 2 |
Kai | China | 1st | N/A | 50 | Minnesota | 14 | Female | 6 | Bio Father | Doctorate | $75,000-$100,00 | 2 |
Rina | China | 1st | N/A | 31 | California | 3 | Male | 3 | Bio Mother | Master’s | $25,000–$50,000 | 1 |
Nandita | Sri Lanka | 2nd | Hindu | 28 | New York | 6 | Male | 3.5 | Bio Mother | Bachelor’s | $50,000-$75,000 | 1 |
Jayanti | Sri Lanka | 2nd | Hindu | 30 | New York | 12 | Male | 5 | Bio Mother | Bachelor’s | $75,000–100,000 | 1 |
Interview Protocol and Data Collection
A semi-structured interview protocol was developed for this study based on a review of the literature and the theoretical model of MTI. Pilot interviews with two participants were conducted to refine interview protocol (Taylor et al., 2015). Selected participants were invited to a one-hour semi-structured interview conducted individually via Zoom. Individual interviews were chosen over focus groups to capture the unique experiences of each parent, given the heterogeneity of the Asian American population. Interviews were audio-recorded, transcribed by a professional service, and stored securely.
Data Analysis
The lead researcher, an Egyptian-White-Thai American Ph.D. candidate in counseling psychology, led the study, supported by a diverse research team, including a White American post-bachelor research assistant, a Korean American master’s level Board Certified Behavioral Analyst (BCBA), and a Chinese American faculty member in counseling psychology. All team members had varying experiences with autism-related interventions, evaluations, or case management. Specifically, some team members were trained in autism diagnostic evaluations, completed an ADOS-2, training, case management services, or provided Applied Behavioral Analysis (ABA) interventions. The team, identifying as neurotypical, was trained in interview techniques, and the same team analyzed the transcript data. Prior to starting the interview process and coding process the research team met to discuss their positionalities including aspects of their identity and prior experience with autism as described above. To ensure credibility of the data, the initial proposal of the study, interview questions, and subsequent results, used peer debriefing with a committee of autism researchers (two doctoral BCBA-Ds and two licensed psychologists).
We conducted a thematic analysis (Braun & Clarke, 2006; Guest et al., 2011) to explore patterns in the interviews with Asian American parents, using a hybrid approach that combined inductive (data-driven) and deductive (theory-driven) methods (Fereday & Muir-Cochrane, 2006). The process began with familiarization, where the research team transcribed and thoroughly reviewed the interview data, noting initial ideas and recurring patterns. Next, we generated initial codes by systematically identifying significant segments of the transcripts, summarizing the core ideas, and ensuring consistency across the team. All members of the research team listened to the interviews subsequently met with the team to ground ourselves in participant perspectives.
After coding, we searched for themes by grouping related codes into broader categories, capturing overarching patterns in the data. These themes were then reviewed and refined to ensure they accurately represented the data, with attention to both the internal consistency of each theme and the distinction between different themes. Once the themes were finalized, we defined and named them, ensuring that each theme was clear, concise, and reflective of the participants’ experiences. All team members were involved in coding and discussing discrepancies in coding with one team member serving as an auditor of the codes the team agreed upon to ensure codes followed the larger analytical story of the interviews.
Finally, we produced the report by selecting illustrative quotes to exemplify each theme, providing a clear and vivid presentation of our findings. Throughout the analysis, we remained reflexive, discussing potential biases and ensuring that our interpretation was grounded in the participants’ perspectives. This process allowed us to capture the complexity of the help-seeking experiences of Asian American parents while maintaining a clear and structured analysis. Interviews ceased at 10 participants due to thematic saturation. Reoccurring topics that come to thematic saturation included: discussing logistical barriers to accessing autism services, experience of getting an autism diagnosis, cultural stigma of autism, and experience with their child’s providers.
Findings
The findings of the thematic analysis revealed four major themes: logistical healthcare barriers, provider-level barriers, autism literacy, and cultural stigma, each with specific subthemes that highlight the challenges faced by Asian American parents of children with autism. Pseudonyms are used throughout for participant confidentiality.
Logistical Healthcare Barriers
This theme describes the structural and language barriers that Asian American families encounter when accessing autism services. A significant subtheme was “insurance and costs of services,” where the majority of participants reported that insurance coverage and the high cost of autism services created financial burdens and obstacles in accessing care. For instance, families like Rina’s and Jayanti’s had to adjust their lifestyles to accommodate the financial demands of autism interventions, with Rina noting that switching providers affected her insurance coverage. In Aminah’s case, her new insurance provider required a “re-evaluation” for her child’s autism diagnosis, which halted her child’s autism services, and created gaps in their treatment:
When the insurance switched, they asked for all re-diagnostic evaluation, everything was new. And then so, even if [a] family is trying to do all that, navigate through the requirement of the insurance, he already lost nine months of therapy, because insurer doesn’t approve it, because you had to prove that you had to be re-diagnosed.(Aminah)
“Transportation and location and providers” emerged as another subtheme, highlighting how commuting challenges and the geographic distribution of quality providers burdened families. For instance, parents like Rachel and Amy described difficulties in balancing work schedules with the demands of traveling to appointments. Others, such as Lila and Lim, shared the challenges of using public transportation with children who have sensory sensitivities. Lila elaborated during her interview that being an Asian woman commuting with her son with a disability made her feel more vulnerable to crime while using the subway system, especially during the height of anti-Asian hate crimes amid COVID-19 pandemic.
In addition to these commuting challenges, many parents reported that during the COVID-19 pandemic, their children’s appointments shifted to a virtual format. Several families found virtual therapy services less effective than in-person sessions, as their children struggled to engage online. Lim, for example, noted that her son benefited more from attending speech sessions in person, explaining,
Yeah. Especially for the speech part… At first, I [thought at] that time if my son can go to the clinic, [it] maybe more efficient and more helpful for him, because he can touch, he can feel, he can talk more. But, no online [therapies] really do not help him.(Lim)
Additionally, “scheduling barriers” were a common challenge, with all participants describing difficulties in arranging service appointments for autism due to long waitlists, conflicting work schedules between providers and parents, and added caregiving responsibilities at home. Several parents reported quitting their jobs to care for their child with autism while juggling other responsibilities, such as caring for extended family or multiple children. Aminah, for example, explained that as an Asian American mother, she was also expected to care for her in-laws. She shared that her father-in-law, who lived with her family and suffered from dementia, had exhibited behaviors that frightened her son’s in-home ABA providers, making it difficult to find consistent therapists. Aminah noted,
In [an] Asian family, you are responsible for everybody in your family. Not only responsible for your son, you are responsible also for your father-in-law… [an] old man going through dementia, it [has] a lot of challenges… Even my ABA provider is afraid of him and runs away… Because he has very interesting attitudes towards people and towards females… he could be quite threatening.(Aminah)
Another subtheme, “age criteria for autism services,” highlighted how some families encountered barriers due to age limitations set by clinics, delaying critical evaluations and interventions. For instance, Rina went to her provider concerned about autism for her son but her provider “[could] not say until he is three.” Lastly, “technology barriers and language barriers” were mentioned by a few parents, who found navigating online paperwork and dealing with providers who did not speak their preferred language to be significant obstacles. Alissa, for instance, emphasized that technology skills were essential for managing the paperwork required to access autism services. She also mentioned needing to call for assistance due to the overwhelming amount of paperwork:
I’m okay with the paperwork. But if you don’t speak English, if you’re not savvy with a computer, it’s very difficult. We just got a self-direction that took a year and a half to get. And it wasn’t just me. I had to call people and they had to help me with the forms.(Alissa)
Provider Level Barriers
This theme captures Asian American parents’ concerns about the quality of services, leading many to seek alternative providers. “Lack of quality care” was a recurring subtheme, where families reported concerns about the competence among providers. For example, Amy and Lim both felt that their initial pediatricians were not proactive enough in addressing developmental concerns, prompting them to seek second opinions. Several families mentioned that their child’s developmental concerns were not proactively addressed by providers. For example, Amy had to push her pediatrician for a referral for an autism evaluation when her son failed to meet developmental milestones. Similarly, Lim had to change her child’s primary care provider (PCP) after her initial PCP refused to provide a referral for an autism evaluation, despite her concerns. Alissa noted that finding a provider well-equipped to work with children with autism is challenging, as it requires a special understanding and skill set:
…it does take a certain type of person. Not every [speech] therapist in the profession is one, good. Second, if they’re good with autistic children, because it just takes that special kind of something just to work with special needs children and have that understanding.(Alissa)
Another subtheme, “underdiagnosis,” was reported by several parents who expressed concern that sociocultural factors, such as cultural norms and the child’s race, contributed to delayed or missed diagnoses. Aminah shared that cultural dynamics influenced how her son’s provider interpreted his autism evaluation. In her culture, children tend to be more affectionate with their parents than in White families, which may have led the provider to overlook autism in her son’s case. Aminah explained that her son did not receive an autism diagnosis in his first evaluation because his affectionate behavior was interpreted as inconsistent with typical autism presentations. She later sought a second opinion:
We saw one psychologist, she said it’s just global developmental delay. Rule out autism. His [autism] presentation is different… and I think this is one of the issues among the Asian families, which is so difficult and so terrible because they’re expecting our kids act like a little White middle-class boy[s]. We have a different dynamic… They’re like, ‘Oh, your son is so affectionate to you.’ Yeah, we love each other, and we show our feelings. I didn’t know that it’s not okay. Showing love, it’s not an autistic trait. We care about each other. I’m the only one, his parent who understands him. So, they ruled out autism.(Aminah)
Rina similarly reported challenges with her son’s autism evaluation. When he was assessed through the school district, he only spoke English during the evaluation, and no autism diagnosis was provided. Rina wondered if conducting the evaluation in English may have affected the findings. Later, when her son was evaluated at an outpatient clinic and spoke Mandarin with the help of a translator, he was diagnosed with autism. She reflected, “Is it because… That time my son [spoke] to the doctor in Mandarin… the [autism evaluation] behavior is different when he’s talking in Mandarin?… I’m also curious, is it possible the [language used] will affect the evaluation?”
“General cultural competence of providers” was a concern for parents, who noted varying levels of cultural awareness and sensitivity among their child’s providers when working with Asian American families overall. Aminah highlighted the importance of providers recognizing how challenging it can be for Asian American mothers, particularly immigrants, to process and accept an autism diagnosis. Many are not only navigating a new healthcare system but also grieving the loss of their home community. Aminah emphasized that this emotional strain, combined with the trauma of immigration, adds to the complexity of the diagnosis:
…when [speaking] about Asian American families. You’re speaking of first immigrants still navigating a system… and missing home, missing their community… The level of anxiety, level of the trauma [we] go through… is high. Whenever I speak with a lot of my Chinese friends about their way of getting [an autism diagnosis], accepting [an autism diagnosis], it’s a lot. You have to understand when you speak about family, you speak about [a cultural community].(Aminah)
Aminah also added that finding a provider who understands her experiences as an Asian American mother and who is also a quality provider for her child with autism is challenging to secure. She mentioned, “you need to find a BIPOC [Black Indigenous Person of Color] [provider] or someone else who understands what disability means in your [Asian] culture. But it’s tricky… You’re essentially doing your own HR search to find the right provider.” Aminah continued to add that it takes her an enormous amount of time to sift through a variety of providers who are both culturally competent and a skilled autism provider for her son.
“Perceived discrimination” was another subtheme, where participants described instances where they felt mistreated due to their racial or ethnic identity. For many parents, this discrimination manifested in subtle and overt ways, often contributing to a sense of powerlessness in advocating for their children’s needs.
Lim, for example, expressed frustration with the lack of appropriate disability accommodations for her child’s autism diagnosis at school, despite her persistent efforts to engage with school officials through calls and emails. Reflecting on these experiences, Lim shared that she felt her Chinese identity contributed to the school’s disregard of her concerns, reinforcing a power imbalance. She stated, “I feel I’m the Chinese… I’m not strong. I don’t use the lawyer. That’s why they keep me down… They say I don’t have a power to [go] against the [school].” Despite following up with the school on five separate occasions, her concerns were ignored, which she believed was partly due to her ethnicity and the perception that she lacked influence compared to others.
Similarly, Rachel, a second-generation Chinese American mother, recounted an incident during her son’s autism evaluation. Despite informing the evaluation team that her family only spoke English at home, the providers insisted on bringing in a Chinese translator. “We told them we didn’t need a translator, but they still provided one,” she explained. “We never spoke to him in Chinese, we only spoke to him in English… They really didn’t listen.” This disregard for her family’s preferences further reinforced feelings of being misunderstood based on racial assumptions, despite their clear communication needs.
Lila, another parent, shared her concerns about how her son was treated differently at school because of his race. Her son, who receives autism services, struggled to communicate with his mother about incidents that happened at school, especially when he was scared. Lila had to step in to advocate on his behalf, expressing frustration that her son’s inability to communicate left him more vulnerable. “When something happens to our kid, [he cannot explain], and when [they’re] scared… they cannot protect themselves,” she shared. This lack of protection, coupled with perceived racial bias, further complicated her efforts to ensure her child received equitable care and support.
Finally, “availability of providers who share similar identities” was a significant issue for many participants, as they expressed a strong desire for providers who understood their cultural background or spoke their native language. However, parents often found it difficult to locate such providers, which added to the complexities of navigating autism care. Kai, the father of a teenage girl with autism, highlighted the extreme measures some families are willing to take when such culturally competent providers are not available. He chose to move his daughter from New York to Shanghai, China, believing that her Mandarin language skills would improve more effectively in a setting where she could receive both language and autism -specific support. Kai explained that he and his daughter struggled to communicate in English due to her speech delays and his own limited proficiency in the language. He felt that if his daughter could master Mandarin, they would have a better relationship and communicate more effectively. Kai acknowledged the difficulties of making such a drastic move but felt it was necessary in the absence of bilingual providers in the U.S. who could support her language development. Reflecting on the impact of the move, he said, “So even now, if I find somebody [in the U.S.], but they don’t have this idea or background, they will miss that. Then the consequences are permanent.” For Kai, the lack of Mandarin-speaking providers in the U.S. created a significant barrier, one that led to the difficult decision to relocate abroad.
Autism Literacy
This theme encapsulates Asian American families’ knowledge of autism and typical child development, as well as when, where, and how to access autism-related services. “Autism awareness and knowledge” was a recurring theme, with most parents describing a lack of awareness about autism, both within their families and their cultural communities. Participants reported limited understanding of autism symptoms and when it was appropriate to seek intervention. Nandita, for example, shared that after her son’s diagnosis, she “was worried… I didn’t know about [services] for specifically people with [autism].” Similarly, Rachel mentioned, “We don’t know many friends or family who had that diagnosis, so we were not 100% sure or even aware of this disability,” which made navigating autism interventions more difficult for her family.
Many parents also reflected on their limited knowledge before receiving the diagnosis. Amy recalled her mother’s reassurances when she expressed concern about her son’s delayed developmental milestones:
My mom was cool about it. She was like, “Well, he is not even that nonverbal. I went to the park and met a boy who is five years old. He still doesn’t talk, and that’s fine.” It was just trying to address some of those early concerns—“Oh, he can’t walk very well, he can’t talk”—and it was like, “Well, he’s still little, so they’ll grow out of it.” But now, in retrospect, he’s six and a half, and I’m very thankful I went through the [autism] evaluation.(Amy)
Lila shared her husband’s initial reluctance to accept their teenage son’s diagnosis, as he struggled to reconcile their son’s functional abilities, such as cleaning up after himself, despite being diagnosed with autism. Lila explained that she had to help him understand that autism presents differently in individuals and that their son’s diagnosis was valid despite his abilities.
“Advocacy” emerged as a critical subtheme in the experiences of Asian American parents, highlighting the additional efforts they felt compelled to make due to how providers perceived them based on their cultural background and the lack of adequate support available for their children with autism. Parents expressed frustration at the limited representation of Asian Americans in the broader autism community, feeling isolated in their advocacy efforts. Aminah, a mother of two, emphasized the significant lack of visibility for Asian Americans within autism advocacy spaces. “If you’re going to find [a family advocate] … and he’s Asian or she’s Asian, let me know because I didn’t find anybody. [Autism] is a field where we don’t have so much representation.” This lack of representation, she explained, not only hindered access to culturally competent care but also made it difficult for Asian American families to find role models or advocates who shared their experiences.
Aminah further elaborated on the cultural challenges she faced in advocating for her child. She noted that her identity as an Asian American often led providers to underestimate her willingness to speak up or challenge the system. As a result, she had to break cultural norms around deference and politeness to ensure her child received appropriate care. “If you don’t speak for yourself, they’re going to chew on you. You cannot just be yourself, respecting others… I came to the point I need to stand for myself and when I come to my son I need to stand, sometimes push,” she explained. Aminah acknowledged that while this assertiveness might be seen as uncharacteristic for someone from her Kazakh background, it was necessary to overcome the passive assumptions providers made about her cultural identity. “You have to be super assertive because they don’t take your concerns seriously,” she added, highlighting the emotional and cultural burden of being an advocate in a system that often dismisses the concerns of minority parents.
Similarly, Lila described her own efforts to secure the services her son needed through formal legal channels. Faced with a public high school that was unable to meet her son’s disability-related needs, Lila hired a lawyer and filed a case with the Department of Education (DOE). Through this legal process, she was able to find a school better equipped to provide the appropriate accommodations for her child. “I hired [Law Firm], they helped me to deal with DOE to pay the general high school. So, we don’t need to pay because the [Law Firm]… They fight for special [needs] children,” she explained. Lila’s experience underscores the extreme lengths some parents must go to in order to navigate a system that fails to offer adequate support from the outset.
Both Aminah and Lila’s stories reflect the intersection of cultural expectations and systemic barriers that require Asian American parents to engage in intensive advocacy to ensure their children receive proper care. This advocacy often requires breaking cultural norms around passivity and deference, particularly in a healthcare system that may not recognize or respect the unique needs of Asian American families. Moreover, their experiences highlight the emotional labor involved in navigating a system that not only lacks cultural competence but also places the onus on parents to fight for their children’s rights. The absence of Asian American advocates and role models in the autism community exacerbates this burden, leaving families like Aminah’s and Lila’s to navigate these challenges largely on their own.
Cultural Stigma
This theme reflects the negative attitudes within Asian American extended families and their religious and cultural communities toward developmental disabilities. Due to limited awareness and knowledge about autism, the “Misconception of autism” subtheme highlighted that many participants’ cultural communities and extended families held inaccurate or negative views about autism. For example, Kai noted that autism is often viewed as a severe mental disorder akin to schizophrenia in Chinese community. Jayanti, reflecting on her Sri Lankan community, noted that while perceptions of autism were improving, negative attitudes still persisted:
Some [Sri Lankan community members] are getting to know that this [autism] is a condition that actually can happen to anybody. A lot of information has been put out recently that wasn’t available before. But at the same time, there’s still a lot of ignorance. They will even blame you for having children with maybe [an] intellectual disability or even autism.(Jayanti)
Similarly, Rachel expressed hope that disabilities would be viewed more positively in the Asian American community: “The Asian culture, when it comes to disabilities, is not always accepting. Hopefully, this study will showcase some of the Asian culture’s ability to support… special needs children in a better light than in previous generations.” Rachel highlighted the importance of future Asian American generations to progress in acceptance of developmental disabilities.
Finally, many participants discussed the “lack of support from extended family and community.” Alissa admitted she was hesitant to share her son’s autism diagnosis with others, adding that her parents-in-law remained in denial:
Honestly, we don’t… I used to go to church. I mentioned the diagnosis maybe to one or two people, but I haven’t really been back. [Alissa’s husband’s] parents are still in denial. My mom is pretty much, she accepts it, but she won’t take care of it unless she has help. My brother… He doesn’t know how to interact with him. Neither does my sister.(Alissa)
Nandita that it’s difficult to connect with other parents because of her son’s diagnosis. Like others, she often finds herself educating her support system about autism due to a lack of knowledge within her cultural community: “I feel like I don’t have many people I can relate with… But most of them also don’t have the information [about autism], so we also have to teach them.” As a result, Lim shared that her family chose not to seek help from their ethnic community:
We tend not to look for resources within the Chinese community because everyone’s so hush, hush about everything… but in terms of getting to the nitty gritty of therapists, who to use, what classes to do, it’s pretty much radio silence among the Asian community.(Lim)
Discussion
There is limited research on autism service disparities and help-seeking barriers among Asian American parents of children with autism (Angell et al., 2018). This study is one of the first to explore these experiences, identifying four key barriers: logistical healthcare challenges, provider-level barriers, autism literacy, and cultural stigma. Notably, these themes often overlap due to the interconnected nature of the challenges Asian American families face when navigating autism services. For instance, language barriers—found within the logistical healthcare challenges—can prevent families from fully understanding the treatment options available to them, which may also hinder their ability to advocate effectively for their children. This lack of advocacy can then compound provider-level barriers, as families may struggle to assert their needs or push back against inappropriate or insufficient care due to communication issues. Similarly, cultural stigma surrounding developmental disabilities can also exacerbate autism literacy barriers. When extended family members or cultural communities hold negative views about autism, parents may be less likely to seek out or accept educational resources, leaving them with a limited understanding of autism services and the developmental milestones they should monitor. Furthermore, families who experience underdiagnosis of autism in their children—due to both provider-level barriers and cultural beliefs—may encounter additional logistical difficulties as they try to navigate fragmented services and long waitlists. This overlapping nature of the barriers underscores the complexity of the help-seeking process for Asian American parents, as multiple challenges often intersect, creating a cumulative burden that can delay or prevent access to critical autism services.
These findings align, to a significant extent, with the MTI (Turner et al., 2016), which describes factors that influence access to mental health services among racial and ethnic minority populations. The MTI’s factors—accessibility, availability, appropriateness, and acceptability—were echoed in our themes, demonstrating that the struggles experienced by Asian American families reflect broader trends in help-seeking behaviors. For instance, logistical healthcare barriers, such as challenges related to insurance coverage, service costs, scheduling difficulties, and transportation issues, mirror the MTI model’s concept of accessibility. Families struggled to find affordable services, dealt with long waitlists, and often faced difficulties balancing their work schedules with the demands of accessing autism services. Similarly, our theme of provider-level barriers aligns with the MTI’s factor of availability. Many families reported underdiagnosis of autism and concerns over the quality of care, which were exacerbated by a lack of culturally competent providers who understood their needs. Cultural stigma, another theme identified in our study, closely parallels the acceptability component of the MTI model. Participants described how misconceptions and negative attitudes about autism in their extended families and cultural communities made it difficult to seek or continue with autism-related services. Lastly, the theme of autism literacy aligns with the appropriateness factor, as it highlights the gap in families’ knowledge about autism, when and how to seek services, and the role cultural beliefs play in shaping understanding of developmental disabilities.
However, despite these overlaps, notable distinctions emerged, indicating that the MTI model does not fully capture the unique help-seeking barriers faced by Asian American families navigating autism services. The MTI model was designed around general psychiatric concerns, whereas autism presents distinct challenges, particularly for families of young children requiring early diagnosis and intervention. One of the key differences is that the MTI primarily focuses on the initiation of treatment, while our study found that barriers extend beyond just accessing services to the ongoing process of navigating autism interventions. This more complex, ongoing process adds layers of challenges for families as they engage with various stages of autism care, from diagnosis to long-term intervention. For example, the MTI model does not specifically account for age criteria as a logistical barrier, which surfaced in our study. Age limitations placed by clinics on when a child can receive an autism diagnosis or begin services often delayed critical evaluations and interventions, a factor unique to autism services. Additionally, technology challenges, such as difficulty navigating online forms and virtual services during the COVID-19 pandemic, were another logistical barrier not captured by the MTI model but particularly relevant to the autism care landscape. The MTI’s factor of availability does not fully encompass the more nuanced provider-level barriers we identified. In particular, families reported a lack of quality and general competence among providers in working with children with autism, which extends beyond the availability of services. Parents expressed frustration with inconsistent appointments, misdiagnosis, and providers’ inability to connect with or properly support their children, underscoring the need for more specialized training and awareness among autism service providers. Additionally, while the MTI model emphasizes the appropriateness of services, it does not account for the extensive advocacy required of parents, particularly Asian American parents, who often need to fight for their children’s access to services. Our findings revealed that parents felt they needed to become advocates within the healthcare and school systems to ensure their children received the appropriate care. This additional layer of responsibility, which is emotionally taxing, is not captured by the MTI model but was a significant theme in our study.
Our study’s findings both align with and diverge from past research on help-seeking barriers experienced by ethnic-racial minority families navigating autism services. Consistent with prior studies, logistical healthcare barriers, including difficulties with insurance coverage, high costs of services, long waitlists, and challenges related to transportation, are significant hurdles for ethnic-racial minority families (Bishop-Fitzpatrick & Kind, 2017; Tregnago & Cheak-Zamora, 2012). Similar to our findings, other racial minority families often encounter delays in receiving diagnoses and interventions for autism due to systemic issues such as underfunded services and lack of access to specialized care. Additionally, cultural stigma regarding developmental disabilities has been widely reported in previous research on African American, Hispanic, and South Asian families, where negative perceptions within cultural communities and extended families often hinder engagement with autism services (Jegatheesan et al., 2010; Karasz et al., 2019). For example, studies on African American and Hispanic families have found that misconceptions about autism and fears of being labeled or blamed can deter families from seeking help early (Zuckerman et al., 2017). In our study, these stigmas manifested in participants’ extended family members or communities holding inaccurate beliefs about the causes of autism, such as misconceptions that it stems from poor parenting or spiritual failings.
However, our study also identified unique experiences among Asian American families that may differ from other racial-ethnic minority groups. While the logistical barriers and cultural stigma themes were consistent with past research, our participants highlighted the added complexity of language barriers and cultural differences in healthcare communication, which may be particularly pronounced among Asian American families. Unlike some African American or Hispanic families, for example, Asian American families frequently struggle with finding providers who can communicate effectively in their native languages, which limits their ability to advocate for their children or fully understand autism services (Kim & Lee, 2022). This aligns with findings from research on immigrant families but is less frequently discussed in studies focused on U.S.-born ethnic-racial minority families. Furthermore, our participants reported that the lack of cultural competence among providers, specifically related to autism interventions, contributed to their sense of isolation and frustration.
Moreover, a particularly unique aspect of our findings is the burden of advocacy reported by Asian American parents. While prior studies on ethnic-racial minority families, especially African American families, have highlighted the need for parents to advocate more assertively for their children due to systemic discrimination (Angell et al., 2018), our study emphasizes the intersection of advocacy with cultural expectations. For Asian American families, the need to challenge authority figures in the healthcare system, such as doctors or educators, can be particularly challenging due to cultural values that emphasize respect for authority and community harmony. This may make it more difficult for Asian American parents to engage in the assertive advocacy required to ensure their children receive adequate autism services. Additionally, the lack of Asian American representation in the broader autism advocacy community, which our study highlighted, has not been as extensively discussed in past research on other racial minority groups. While African American and Hispanic families have made significant strides in visibility and advocacy within autism-related spaces, Asian American families remain underrepresented, compounding feelings of isolation and difficulty in navigating services. Therefore, while our study shares similarities with the broader body of research on ethnic-racial minority families, it also points to the distinct experiences of Asian American families that warrant further exploration and targeted support.
Finally, our study was conducted in 2022, during the aftermath of the COVID-19 pandemic, which had a significant impact on the healthcare landscape and service delivery. Many families reported disruptions in autism services, with in-person appointments being replaced by telehealth sessions. While telehealth provided a necessary alternative, several participants shared that virtual therapy was less effective, particularly for children with sensory sensitivities or behavioral challenges. Additionally, families with limited access to reliable internet or technology proficiency faced further obstacles in engaging with remote services. The pandemic also heightened feelings of isolation, particularly among Asian American parents, who were simultaneously navigating both the shift to virtual care and the rise in anti-Asian discrimination during this period. These factors underscore the importance of considering the lasting effects of the pandemic on healthcare accessibility and the specific challenges it posed for racial-ethnic minority families seeking autism interventions.
Limitations
There are several important limitations to the current study that should be considered. First, the study’s focus on Asian American families encompasses a large, heterogeneous population, which means that the findings may not fully capture the diverse experiences within this group. Asian Americans represent a wide range of ethnicities, cultures, religions, languages, and family structures, all of which can influence caregiving experiences in unique ways. While this study aimed to highlight common barriers faced by Asian American parents, it is crucial to recognize that the nuanced differences between subgroups, such as specific ethnic backgrounds or levels of acculturation, may not be fully represented. The historical context of immigration, levels of community support, and socioeconomic status across these groups vary, potentially leading to differences in how families access or engage with autism services. Additionally, the study did not include non-English-speaking parents or those who are not currently engaged in autism services, which further limits the representativeness of the sample. It is likely that the study underestimates the needs of non-English-speaking parents or those who may be undocumented, as these populations face additional challenges such as language barriers, limited access to resources, and heightened concerns around navigating the healthcare system. This exclusion is particularly significant given the high proportion of Asian Americans who are not proficient in English—28%, according to the Pew Research Center (Budiman & Ruiz, 2021). These parents are likely to face even greater difficulties in accessing autism services, yet their experiences were not captured in the study. The reliance on snowball sampling, sample size of 10, and online recruitment through social media platforms and autism-related agencies also poses a limitation. This method may have introduced sampling bias, as participants with access to these networks and resources may differ from those without. Parents who are already connected to autism services or support networks may have different experiences from those who are isolated or unaware of available resources. This reliance on online platforms also potentially excludes lower-income families or those without reliable internet access, further limiting the diversity of perspectives included in the research.
Clinical Implications
These findings have important implications for clinical practice and the healthcare system, offering actionable steps to improve the accessibility and delivery of autism services for Asian American families. The following recommendations are based on themes identified in participant interviews and supported by broader research on reducing healthcare disparities for marginalized populations.
Enhancing access by addressing logistical barriers
To improve access, providers should consider employing care navigators, such as social workers, case managers, or family advocates, who can assist families with service coordination, completing paperwork, and accessing autism-specific interventions. Having a dedicated advocate helps reduce parental stress and empowers families, especially those from racial minority backgrounds, to better understand and utilize autism services (Jamison et al., 2017). Furthermore, addressing technological literacy among parents is critical. Providing clear, culturally tailored instructions or offering in-person assistance with online forms could help bridge the gap for families with low technological proficiency. Ensuring support for non-English-speaking families is also key to reducing healthcare disparities and improving access to autism services.
Culturally tailored autism care: fostering provider competence
A recurring theme was the lack of cultural competence among providers, with participants expressing frustration over providers’ limited understanding of their cultural values and the specific needs of Asian American families. To address this, healthcare providers must tailor services to align with the unique cultural backgrounds and family dynamics of Asian American families. Research shows that personalized, culturally responsive care significantly improves client satisfaction (Huey & Tilley, 2018). Providers should actively seek information about cultural values that may influence care, such as the desire to integrate specific social skills related to the child’s Asian heritage into therapy. In addition, many Asian American families maintain close relationships with extended family members, particularly grandparents, who often serve as key caregivers. Healthcare professionals should consider incorporating extended family members into the care process, as they can play an instrumental role in supporting the child’s development and managing autism interventions. Research indicates that grandparents frequently share caregiving responsibilities in Asian households (Hoang & Kirby, 2020), and their involvement could strengthen the support system for the child.
Training providers in cultural humility and anti-bias practices
Participants also highlighted instances of discrimination and perceived bias from providers, reinforcing the need for improved training in cultural humility across healthcare disciplines. Providers must be trained to understand the complexities of working with Asian American families, including issues related to acculturation, immigration, and language barriers, which may affect the family’s experience in healthcare settings. One effective model for addressing these gaps is the “Resident as Teacher” (RasT) model, which can be adapted to train healthcare professionals in recognizing, addressing, and redressing health inequities, including those faced by Asian American parents (Williamson et al., 2022). This model encourages healthcare providers to cultivate empathetic, patient-centered care, ensuring that families from diverse backgrounds receive equitable and culturally sensitive treatment. The goal of a culturally sensitive provider is to respect and integrate a patient’s cultural beliefs into care.
Increasing awareness of autism literacy
Another significant barrier was the low autism literacy in Asian American communities. Families reported that community members and extended family often dismissed early symptoms of autism, attributing developmental differences to personality or gender rather than potential neurodevelopmental issues. Providers, allied health professionals, and community organizations must invest in raising awareness of autism in Asian American communities by holding culturally adapted workshops and seminars on autism’s early signs and symptoms. These efforts could take place in community centers, schools, daycares, and religious settings where Asian American families are active. Successful examples of such interventions for autism include a culturally adapted autism literacy program implemented in African American communities that entailed a 45-minuite PowerPoint and instructor led autism-awareness training model that used video examples to help parents identify symptoms of autism (Johnson & Van Hecke, 2015). Another example of increasing mental health literacy within Asian American communities is an intervention held in English and translated into Mandarin at churches geared towards older Chinese American adults (Teng & Friedman, 2009). The training specifically provided an introduction to mental health, types of providers, and psychiatric disorders most relevant to an elderly Chinese population. A similar approach, tailored to the cultural nuances of Asian American families, could increase early identification of autism and improve access to timely interventions.
Supporting caregiver advocacy and emotional well-being
Parents in this study frequently reported the need to advocate on behalf of their children, often feeling that providers dismissed their concerns. Engaging in advocacy, while essential, can be emotionally exhausting, particularly for families who already face cultural and systemic barriers. Providers must recognize the emotional toll this advocacy places on families and work to create stronger partnerships with parents through active listening, empathy, and clear communication. Additionally, offering formal and informal support groups for Asian American parents may help alleviate feelings of isolation and provide emotional relief. Online support groups, in particular, have been shown to increase self-efficacy and improve emotional well-being for parents (Yen & Valentine, 2023). Providers should consider referring families to culturally relevant support groups or creating such spaces within their practices to foster community and resilience among parents.
Combating cultural stigma through education and public awareness
Cultural stigma remains a significant barrier to seeking autism services for Asian American families. Misconceptions about autism persist in many communities, where children with developmental disabilities may be viewed negatively. Providers and community organizations can help combat these stigmas by launching public education campaigns that normalize autism and reduce harmful stereotypes. These campaigns could involve mass media outreach, community leaders, and religious institutions to reach broad audiences. Healthcare providers should also recognize that certain subgroups within Asian American communities—such as those with lower English proficiency—may be less likely to seek autism services. These groups may require additional outreach and support to ensure they receive appropriate care for their children.
Research Implications
This study also has several implications for future research. First, researchers should explore the extent to which Asian American families experience the four barriers identified in this study—logistical healthcare challenges, provider-level issues, autism literacy, and cultural stigma —across different subgroups. Developing validated scales to measure these barriers could help quantify the impact and target interventions more effectively. Second, future research should test pilot programs designed to increase autism literacy within Asian American communities. Such programs could evaluate the effectiveness of different community-based interventions in improving early detection and reducing stigma. Finally, creating and validating cultural stigma scales specific to Asian American parents could provide important insights into the unique challenges these families face and inform culturally sensitive interventions.
Beyond quantitative measures and intervention development, qualitative research should further investigate the nuanced experiences of Asian American families navigating autism-related services. Longitudinal studies could provide insight into how these barriers evolve over time and how families adapt to challenges related to diagnosis and treatment. Additionally, research should examine how systemic factors, such as healthcare policies and insurance coverage, shape access to autism services for Asian American families. Expanding research in these areas can lead to more inclusive policies and culturally responsive approaches to autism care.
Compliance with ethical standards
Conflict of Interest
The authors declare no competing interests.
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