Abstract
Keywords
The U.S./Mexico border presents significant physical, cultural, and logistical challenges to accessing autism services. Daily, around 1 million people cross the California and Texas borders, with waits averaging 2–3 hours (Pew Research Center, 2023). Limited healthcare access in Mexico has historically driven people to seek U.S. options (Guendelman & Jasis, 1990). However, healthcare reforms in Mexico, such as the shift toward Universal Health Coverage and expanded access to surgical and primary care, have improved healthcare equity, with 81.7% of the population now having timely access to essential services despite ongoing gaps in rural areas (Pérez-Soto et al., 2023). Efforts to address underserved areas and reduce financial barriers further indicate progress in reducing reliance on U.S. healthcare options (Choperena-Aguilar et al., 2021; Rodríguez Aguilar et al., 2023). Still, there is a perceived benefit of getting medical and related services in the United States (U.S.).
Research shows a scarcity of pediatricians near the Texan border to screen Latine children for autism adequately (Gonzalez et al., 2015). The border is a unique socio-physical space marking national boundaries, where many face severe stressors, including poverty, militarization, drug violence, and xenophobia (Koyama & Gonzalez-Doğan, 2021; Lee, 2013). Federal and state policies also restrict undocumented immigrants from health and social services (Young & Pebley, 2017). The ongoing movement of documented, undocumented, and U.S.-born individuals across the border contributes to economic concerns, fueling policies focused on border security and deportation (Pew Research Center, 2023). While the U.S./Mexico border presents socio-physical challenges such as poverty and militarization, it is also a culturally rich and resilient space where binational solidarity, economic dynamism, and shared environmental efforts contribute to a sense of community and cross-border cooperation (Clark & Nyaupane, 2024; Ingram et al., 2023).
Tijuana/San Diego border
Tijuana, Baja California, emerged as an urban center largely due to its proximity to the U.S. border (Ganster & Collins, 2017). The closely linked cities of San Diego and Tijuana highlight asymmetries and codependencies, with the U.S./Mexico border region presenting unique challenges for immigrant families seeking healthcare and social services. Border checkpoints and patrols restrict mobility, particularly for undocumented immigrants (Ortiz et al., 2024). Many Mexican immigrants in California seek healthcare in Mexico due to barriers in the U.S., such as lack of insurance and limited English proficiency, facilitated by the proximity to the border (Wallace et al., 2009). Immigrants and refugees face mental health challenges stemming from political instability, economic hardship, trauma, immigration status, family strain, and acculturation (Paat & Green, 2017). Historical research has challenged assumptions about healthcare-seeking behavior. In the 1990s, studies revealed that upper-middle-class Mexican women with family connections often sought maternity care in the U.S., primarily through private services paid out of pocket or via private insurance, rather than undocumented immigrants accessing public services (Guendelman & Jasis, 1990). The interplay of historical, political, and social factors continues to shape healthcare access and mental health outcomes for immigrant families in this region. Mexican immigrants living at the border give birth to their children in the United States to mitigate sociocultural disparities between Mexico and the United States and to increase their children’s potential for upward social mobility (Tessman & Koyama, 2017;Vargas Valle, 2014).
Recent education research highlights the unique identities and needs of
Tessman & Koyama describe sacrifices made by
Mexican-immigrant caregivers of autistic children
Although research on Mexican-immigrant Latine caregivers of autistic children is limited, studies on Latine caregivers in the U.S. reveal sociocultural and systemic barriers to timely autism diagnosis (Mandell et al., 2009). These barriers include limited information on developmental disabilities (Zuckerman et al., 2018), poor provider interactions (Parish et al., 2012), and stigma in healthcare (Zuckerman et al., 2014). Latine communities often conceptualize autism differently, attributing behaviors to parenting rather than developmental issues (Zuckerman et al., 2014). Following the theoretical synthesis of the disparities experienced by Latine autistic children, Lopez (2014) identifies “interaction points” as moments at the macro-, meso-, and micro-levels where interventions can be embedded to employ change at treatment, community, and cultural levels. Yet issues remain in identifying and using employing interventions that disrupt cycles of disparity while also promoting culturally sustaining care for Latine autistic individuals and their families.
Qualitative studies grounded in
The Mexican-immigrant experience consistently demonstrates that families face multiple barriers to secure services for their autistic children including access to medical insurance, financial burden, fear of deportation, and challenges navigating the education and healthcare system (Cohen et al., 2023; Luelmo et al., 2020). Qualitative studies have also offered a nuanced understanding of caregivers’ autism beliefs, diagnostic pathways, and treatment disparities that move away from a deficit focus (Cohen et al., 2023). In a multiple case study of 38 Mexican heritage families of autistic children, Cohen et al. found that families encountered personal challenges resulting in delayed acknowledgment of autism, challenges related to their documentation status, and abrupt service cancelations. The studies (Cohen et al., 2023; Luelmo et al., 2020) focused on long-term U.S. residents who accessed developmental disability services, excluding the unique experiences of
Current research on Mexican-immigrant caregivers of autistic children has yet to address the unique experiences of U.S.–Mexico border communities. These daily experiences are essential to understanding the diverse needs within the Latine community (Bak et al., 2023; Steinbrenner et al., 2022). Indeed, Mexican immigrants of autistic children have complex experiences that require an examination of intersectional identities (e.g., race and disability) that contribute to sociocultural level disparity factors: micro (individual: provider or patient), meso (organizational: formal organizations or lay sectors), and macro (societal: larger policy or environmental contexts) (Lopez, 2014). The U.S./Mexico border contextualizes the Mexican-immigrant experience to help us understand how the physical, social, and cultural border interacts to produce risk and resilience factors for the pursuit of autism services. We asked the following research questions:
What are the experiences of mothers living in the U.S./Mexico border while seeking services for their autistic children, and what social and financial resources influence their decisions?
What are the motivations for pursuing autism services in the United States for mothers living at the U.S./Mexico border?
What are the barriers and facilitators to service access expressed by U.S./Mexico mothers of autistic children?
Methods
We employed two qualitative methodological approaches: thematic categorical analysis (Saldaña, 2015) and dialogical narrative analysis (DNA; Frank, 2012) to document and analyze the motives, experiences, and perspectives of mothers who actively cross or are looking to cross the U.S./Mexico border to access autism services while highlighting their intricate lived experiences. Thematic categorical analysis allows data to be examined to identify recurring patterns and categories and then be grouped into themes. DNA is a qualitative research method that emphasizes the co-construction of meaning through dialogue and interaction within narratives (Frank, 2012).
Community partnership
We first engaged a community of autism service providers in a state public health agency in Tijuana, Baja California, which focuses on promoting the well-being and protection of children and Mexican citizens of low economic status. In addition, caregivers who lived on the border and were parents of autistic children were also recruited to participate in the research material development using a two-phase community participatory research approach. A qualitative methodological approach was used to document and analyze the cross-border experiences of parents and children who (1) cross the U.S./Mexico border regularly to access autism services or are (2) looking to pursue autism services in the United States in the near future. Community partners provided support by serving as recruitment partners to pursue a purposeful sample (Palinkas et al., 2015).
Positionality of the researchers
All three authors are first-generation Latine immigrant-origin, bicultural, bilingual, and immersed in the Latine culture. None of the authors are autistic, which may have served as a limitation to understanding the barriers and facilitators when pursuing autism services at the border from a self-advocate perspective (e.g., priorities in services and/or sensory impact of border crossing). The first author is a cis-gendered Mexican woman whose family moved to the United States in search of autism services for her two autistic siblings. The second author is a Mexican cis-gendered woman, who identifies as
Participants
Although caregivers of autistic children living at the U.S./Mexico border were recruited more broadly, only mothers approached our team to be interviewed. Thus, we refer to participants as mothers in the remaining article. Purposeful and snowball sampling methods were used for recruitment through online community groups where caregivers in Tijuana searched for autism services (e.g., Autismo Tijuana), community groups for
Interview protocol and community-based participatory research
Like Cioè-Peña (2020), we adopt a community-based participatory research (CBPR) framework (Minkler & Wallerstein, 2008) to illuminate the compounding oppressions endured by mothers of autistic children living alongside the U.S.–Mexico border at the backdrop of anti-immigrant rhetoric and immigration policies that doubly impact marginalized people in ways that are distinct from the United States latine population and immigrant population at large. CBPR is a collaborative approach where researchers and community members work together throughout the research process, valuing the community’s knowledge and experiences with the common goal of addressing disparities. CBPR fosters collaborative research aligned with community priorities, addressing disparities through topics often seen as taboo, like immigration status. This approach promotes mutual respect, trust, and shared decision-making, with community members actively influencing research materials and enhancing engagement, showcasing CBPR’s value in autism research (Chen et al., 2024).
Using a CBPR approach, the interview protocol was co-created with community partners from the Tijuana Sistema Nacional para el Desarrollo de la Familia (DIF), private Mexican psychologists offering autism services, and Mexican mothers of autistic children in Tijuana, B.C. Heritage Spanish speakers, the first and third authors developed the protocol in Spanish based on research questions. A roundtable with Tijuana service providers allowed them to share insights on
Data analysis
Thematic
Spanish audio recordings were obtained via Zoom or WhatsApp and transcribed with Sonix.ai. The first author reviewed and cleaned the transcriptions for accuracy, followed by two coding cycles. The first cycle used an inductive approach with Descriptive and In-Vivo codes through open coding, resulting in 61 initial codes. A codebook was created in Dedoose™ and tested for inter-rater reliability with the second author. In the second cycle, axial coding refined the dominant codes and grouped them into categorical themes, yielding 40 final codes. The 11 interviews were re-coded, achieving a 75% inter-rater reliability score, and all discrepancies were resolved to reach full consensus. See Table 2 for code book.
Dialogical narrative analysis
DNA views stories not only as isolated artifacts but also as dynamic and relational processes influenced by cultural, social, and interpersonal contexts. Following this practice, three participant narratives were written as reference narratives to prioritize their own language and honor the complexity of their experiences (Cohen et al., 2023), calling into action the need for systemic change in autism services in the United States and Mexico. We selected mothers’ narratives based on the breadth of citizenship status observed, which yielded three different patterns: both parent and child were U.S. citizens, only the child was a U.S. citizen, and neither the parent nor the child was a U.S. citizen. These three different patterns are representative of the participants as they were all at various stages of their pursuit of autism services in the United States.
Results
Demographics
Mothers had an average age of 36 (standard deviation (
Participant demographic information.
Codes, definitions, and frequencies.
Narrative profiles
The narratives of border mothers illustrate a range of experiences and the social and financial resources that contribute to their decision to access services in the United States. To answer the first research question, we present three profiles of mothers to illustrate the heterogeneity of experiences within the U.S./Mexican border experience—mothers who have attempted but failed to cross the border, dual nationals, or mixed immigrant status families who are thinking of seeking services in the United States, and families who now live in the United States but are experiencing financial and emotional crises.
Julieta
Julieta is a 33-year-old lawyer born in Tijuana B.C. Her parents came to Tijuana when they were young. She is a single mother of two boys, a 13-year-old and Mauricio who is 7 years and non-speaking autistic. She describes her family role as all-encompassing,
Manuela
Manuela is 30 years, she was born in San Diego but lived in Tecate and Tijuana, B.C. until she was 8 years, she is one of five sisters, but one of two who are U.S. citizens so she “
Eva
Eva is a 34-year-old single mother who was born in Mexico city and came to Tijuana B.C. when she was 3 years. She is one of five children and considers herself the happy sister through tears she described herself as the source of moral support to her siblings. She is a mother of five children, and the youngest is autistic. She first noticed her son Saul was different at age 1 1⁄2 when he would tiptoe, hand flap, and line up bottle caps and in moments of crisis would bite and hit himself. For 3 years, Eva refuted these claims and insisted to herself and others that her son was fine. When at age 5 he was diagnosed, people’s comments hurt her deeply, “
Thematic analysis
Through thematic analysis, we identified three global themes that describe the dynamic process of pursuing autism services and migrating to the United States. Mothers described their experience at the border as being in a state of constant contrast, followed by pressures and appraisal of perceived benefits of moving to the United States, ending in assessing potential pathways to immigration given current financial resources, citizenship status, and social capital. To support language sovereignty and to center multilingualism as a legitimate practice, we provide direct quotes from interviews conducted in Spanish and English translations in footnotes. This has been considered a politically conscious move by other Latine researchers (Fierros & Delgado Bernal, 2016) (see Figure 1 for global themes, sub-themes, and frequencies).

Global themes and sub-themes.
State of constant contrast between Mexico and the United States
The first research question addresses the broader experience of mothers raising autistic children on the U.S./Mexico border. The experience of raising an autistic child on the U.S./Mexico border creates a space where families are constantly comparing autism services in Mexico to the U.S.-weighing risks and benefits of staying in their home country, moving, or committing to daily border crossing. This was apparent when mothers described their dissatisfaction with the care in Mexico and repeatedly saw the United States as a solution to their unmet needs, even when unsure about the autism service system in the United States.
Autism diagnosis and services as catalyst to pursue care in the United States
For border families, autism diagnosis was specifically marked as a lengthy process that yielded multiple provider visits, over months. Participants described how they were met with hesitancy from pediatricians to evaluate for autism and were then referred to specialists such as pediatric neuropsychologists, who would perform general assessments such as hearing tests, brain imaging, and genetic testing. The pediatric neuropsychologist would then refer participants to specialized psychologists who would perform observational assessments such as the Autism Diagnostic Observation Schedule (ADOS; Lord et al., 1989), Autism Diagnostic Interview-Revised (ADI-R; Lord et al., 1997; Magaña & Smith, 2013), and self-developed assessments for weeks to months at a time. Participants were required to pay out of pocket for each visit and were often charged an additional fee for the final diagnosis. For Manuela, her mother-in-law, who worked at a hospital, was the first to see signs of a potential autism diagnosis, but Manuela kept telling herself, “
Mothers reported that after securing a diagnosis in Mexico, they began receiving autism services which targeted challenging behavior and language development. Autism services were either received through a private practice or a state-funded autism center. Regardless of the type of autism service that participants accessed, they noted dissatisfaction with the therapies due to slow therapy progress, multiple providers, and high costs. All of these factors combined answer the second research question as they were the motivating factors which led many families to investigate the autism service system in the United States. Participants either passively or actively engaged in this investigation by going to therapy centers, having conversations with people who they knew were accessing autism services in the United States, or buying into the larger conceptual idea that services in the United States would be better.
Family involvement: supportive and unsupportive
Along with their dissatisfaction with autism services, participants also shared how their experience was shaped by both supportive and unsupportive familial involvements. At times, families were supportive of the participants receiving a medical evaluation for their children as they agreed that there were developmental concerns and their involvement was an integral piece in their acceptance of the autism diagnosis and pursuit of autism services. Manuela remembers how as soon as she received her son’s diagnosis she called her mom and her aunts—they quickly accepted the diagnosis and said
Julieta struggles with this decision amid food, housing insecurities, and pressures from family and professionals who say, “
When Julieta reflects on why she is constantly considering moving to the United States, she mentions a moment when Mauricio engaged in self-injurious behavior, “
Active pursuit of autism services in the United States
Prompted by their dissatisfaction with the education and health system, societal pressures to seek autism services, and family involvement, mothers describe actively investigating the possibility of pursuing autism services in the United States. For Manuela, as a
Potential pathways to immigration: citizenship status and willingness to sacrifice
The third research question sought to identify and understand the barriers and facilitators encountered by mothers when accessing services in the U.S./Mexico border. Thematic analysis identified facilitators and barriers that impacted mothers’ ability to pursue autism services in the United States: citizenship status and willingness to make sacrifices. Some mothers in our sample had given birth to their autistic child in the United States while not having been U.S. citizens. One mother was in the process of naturalizing their child through their maternal grandmother who was a dual citizen. Participants saw U.S. citizenship as an asset as it gave them the right to access services in the United States. Those who were U.S. citizens themselves highlighted that their citizenship allowed them to physically cross the border and explore autism services in the United States while remaining in Mexico. Other mothers who only had visas were physically able to cross the border, yet were hesitant to explore services given their immigration status.
For mothers along the U.S./Mexico border, citizenship guarantees upward social mobility and, therefore, access to services. They must also make incredible sacrifices that are disruptive to other family members, their own careers and financial stability, and their own safety. Mothers in our study, such as Eva, was willing to sacrifice her safety to access autism services by attempting to cross the U.S./Mexico border. Eva wanted more information, more resources, and clear answers. She hid her decision to cross the U.S. border with her autistic son Saul from her family and Saul’s father. When she contacted a “
Discussion
Using categorical thematic analysis and DNA, we give voice to the intersectional identities and sociocultural level factors (macro, meso, and micro) of border mothers experiencing autism service disparities across countries and how they leverage social and financial resources, and U.S. citizenship to overcome challenges. Our findings suggest that border mothers of autistic children have complex motivations for seeking autism services in the United States. Akin to the broader
Macro-system factors for border mothers of autistic children
In reference to the first research question, the experience of mothers of autistic children was shaped by their dissatisfaction with autism services, which led to constant comparison between autism services in Mexico and the United States, a direct byproduct of the culture of the border. The symmetric and asymmetric relationship between the United States and Mexico, driven by the transmigration and exploitation of workers, commercial trade, binational sharing of ideas, and the transfusion of knowledge and services across the U.S./Mexico border result in caregivers’ binational exploration of autism resources and services (Velez-Ibañez & Heyman, 2017). According to available data, approximately 18% of people living along the U.S./Mexico border are considered to be living below the poverty line, which is significantly higher than the national average of 12% (U.S. Census Bureau, n.d.). Across borders, families have historically developed networks bridging the health systems of two societies—learning to navigate both healthcare systems and familiarizing other relatives with resources and strategies, while maintaining some services in their home country (Guendelman & Jasis, 1990). We find similar patterns for autism services, where families who have learned to navigate the autism service system in the United States paved the way for others. However, this requires cultural capital and clear pathways to accessing services across the border: U.S. citizenship status, guaranteed employment, and family in the United States that might help them settle.
The border region of San Diego-Tijuana is characterized by marked differences of income and infrastructure endowments (Mendoza Cota, 2017). The cost of living in the United States is much higher, and some eligibility for services is dependent on financial resources—to be eligible for California’s Medicaid (Medi-Cal) families must be at poverty levels (McIntyre & Song, 2019). Thus, families living at the border feel pressured to make drastic decisions regarding their families’ quality of life to be eligible for public assistance and autism services. Families with mixed citizenship status often seek educational and therapeutic services in the United States while living in Mexico, making decisions to manage the cost of living. Reflecting patterns observed in the broader
Meso-system: saturated autism diagnostic and service systems
Obtaining a diagnosis can be a lengthy process, accompanied by financial strain, and anxiety—as Latine parents’ experience of the diagnostic process is obscure and their knowledge of autism is limited (Zuckerman et al., 2014). These factors doubly impact
The path to an autism diagnosis in Mexico is accompanied by visits to pediatricians, pediatric neuropsychologists, pathologists, audiologists, psychiatrists, and autism specialist psychologists, cementing the belief that autism is a condition that necessitates specialized and urgent attention (Harris & Barton, 2016). The urgency and medical attention children receive once given a diagnosis is echoed by family members as they have limited knowledge of autism and their knowledge of parenting and child development no longer applies or works with their autistic child. To address the specialized needs of their autistic children, parents look for quality and effective therapies and schooling in Mexico through informal avenues such as parent support groups, other providers, and on the Internet (e.g., Facebook groups) where they pose the question “
The public health and assistance sector of Mexico, DIF, National System for Integral Family Development, is a federally funded but state run entity in most major states, including Baja California. It aims to serve low-income families who are seeking services at the Autism Center. Families undergo an economic evaluation that determines their therapy copay which averages 50 pesos (around U.S.$2.50 USD at the time of publication) per session followed by an estimated wait time of 6 months. Children then receive a battery of autism evaluations resulting in target goals for the intervention period that spans at most 9 months. Children receive 1–1 intervention sessions, with a trained clinician once a week for 40 min with a 5-min parent debrief. Throughout the 9 months of interventions, caregivers also receive psychoeducation once a month. After the intervention period, families graduate from the DIF Autism Center and are welcome to return whether new needs arise, where they will re-enter the waitlist. In our study, only four of the 11 mothers knew about the DIF and two were receiving services, while the remaining two were on the waitlist.
Family involvement: supportive and unsupportive
Within the broader Latine literature,
Micro-system: risk and resilience factors
Border mothers experience numerous struggles related to mixed citizenship status, housing costs, access to medical insurance, and limited time with family, but they seem to weigh the sacrifices they make against their perceptions of their child’s opportunity in Mexico to resist powerlessness. This idea fits the broader literature related to U.S./Mexican border communities as “a site of opportunity to migrants and to the complex economies that flourish in the borderlands” but also as a “site of constraint because the border creates inequality between crossers and non-crossers” and often these inequities exists within families (Chavez, 2016).
For Mexican women, and specifically Mexican-immigrant women, motherhood is deeply intertwined with sacrifice. Transnational mothers make the sacrifice to leave their children behind in Mexico while they work in the United States to ensure their children’s survival and future success, while grandmothers who assume caregiving roles make sacrifices in the form of extended childcare responsibilities and the emotional toll of separation from their daughters (Oliveira, 2018). Similarly, mothers living at the U.S./Mexico border take on sacrifices that stem from their sense of duty and responsibility as mothers, viewing these sacrifices as integral to their role, like
Implications for research, practice, and policy
It is critical that we continue to tailor caregiver interventions to meet the cultural context of diverse families. Caregiver education programs have been culturally adapted using the ecological validity framework ((EVF); Bernal et al., 1995; Dababnah et al., 2023; Lopez et al., 2019; Xu et al., 2018), and these studies have documented multiple benefits of cultural adaptation including improved caregiver participation and increase intervention efficacy for autistic children and their parents (Buzhardt et al., 2016; Chlebowski et al., 2018; Magaña et al., 2017). For
Providers serving autistic children and families alongside the U.S./Mexican border must have knowledge of the multiple factors that may impact treatment access and acceptability. This may help mitigate stigma around transborder autism services for
Mexican autistic self-advocates, autism service providers, and parents of autistic children have undertaken efforts to promote awareness and acceptance of autism. Such key members of the community have organized various grassroots events such as conferences (e.g.,
Limitations
There are notable limitations to this study that merit consideration. This study only included biological mothers; therefore, the perspectives of fathers or other primary caregivers are not represented. The data are also not representative of other family members who were or would ultimately be impacted by the decision to pursue autism services in the United States such as other children or extended family. Another important perspective that is missing in this study is that of autistic individuals—who could speak to additional barriers and considerations related to quality of life at the border. Representation is also limited from
Future research
This study opens several avenues for future research. Longitudinal studies could examine the long-term outcomes of children with autism from
The experiences of border mothers navigating autism services for their children highlight the complex interplay of cultural, economic, and policy factors that influence their lives and decisions. By giving voice to their stories, this study not only contributes to our understanding of these dynamics but also calls for a compassionate and comprehensive approach to support these families.
Conclusion
Increased collaboration and communication between U.S. and Mexican service providers could facilitate smoother transitions for families navigating complex decisions regarding care and education for their children. Training programs for providers on both sides of the border should include modules on cultural competency, understanding the specific challenges of transnational families, and the dynamics of autism diagnosis and treatment in a cross-border context. For example, universities across borders could collaborate on educational projects and expand collaborations to support
Supplemental Material
sj-docx-2-aut-10.1177_13623613251322059 – Supplemental material for Sacrifice, uncertainty, and resilience: Qualitative study of U.S./Mexico border mothers of autistic children
Supplemental material, sj-docx-2-aut-10.1177_13623613251322059 for Sacrifice, uncertainty, and resilience: Qualitative study of U.S./Mexico border mothers of autistic children by Fernanda A Castellón, Ana Dueñas and Paul Luelmo in Autism
Supplemental Material
sj-pdf-1-aut-10.1177_13623613251322059 – Supplemental material for Sacrifice, uncertainty, and resilience: Qualitative study of U.S./Mexico border mothers of autistic children
Supplemental material, sj-pdf-1-aut-10.1177_13623613251322059 for Sacrifice, uncertainty, and resilience: Qualitative study of U.S./Mexico border mothers of autistic children by Fernanda A Castellón, Ana Dueñas and Paul Luelmo in Autism
Footnotes
Author contributions
Declaration of conflicting interests
Funding
Supplemental material
References
Supplementary Material
Please find the following supplemental material available below.
For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.
For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.
