Sacrifice,uncertainty,and resilience: Qualitative study of U.S./Mexico border mothers of autistic children

Abstract

The purpose of this study was to explore and document the migratory motivations and reasonings of Mexican mothers of autistic children pursuing autism services in the United States. The study was guided by the overarching research question, “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?”. Following a Community-Based Participatory Research approach, we collaborated with organizations and stakeholders in the development of qualitative research materials while also supporting the purposeful recruitment of caregivers who: (1) had lived in the U.S./Mexico border and moved to the United States to pursue autism services, or (2) were currently living in the U.S./Mexico border and were looking to pursue autism services in the United States. Eleven mothers participated in a two-part semi-structured interview protocol alongside a demographic form. Findings outline three global themes that describe the dynamic process of pursuing autism services and migrating to the United States: (1) stage of constant contrast between Mexico and the United States, (2) active pursuit of autism services in the United States, and (3) potential pathways to immigration. The global themes provide a systemic analysis and reflection of the current autism service system in Mexico while also highlighting the gaps in service coordination for first-generation immigrant families.

Lay abstract

This study aimed to understand why Mexican mothers of autistic children move to the United States to seek autism services. Using a method that involved the community, we worked with local partners to create research materials and find caregivers for the study. We focused on mothers who had either moved from the U.S./Mexico border to the United States for autism services or were planning to do so. Eleven mothers participated by completing a two-part interview and a demographic form. The results highlight three main themes that explain the complex reasons and motivations behind their decision to seek autism services in the United States: (1) stage of constant contrast between Mexico and the United States, (2) active pursuit of autism services in the United States, and (3) potential pathways to immigration. These findings also highlight the differences in autism services between the United States and Mexico and the challenges faced by immigrant families trying to get the care their children need.

Keywords

autism services autism spectrum disorder (ASD)Community-Based Participatory Research (CBPR)Mexican mothers U.S./Mexico border

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 transfronterizx—adults with ties on both sides of the U.S./Mexico border, including U.S.-born children or cross-border connections (Ojeda, 1993; Relaño Pastor, 2007). Of interest to this study are the experiences of caregivers who seek autism educational and medical services in the U.S. while living in Mexico, due to limited public health services and the high cost of private education in Mexico. Tessman and Koyama (2017) find transfronterizx caregivers leverage their cultural and social resources to make informed decisions while conducting a cost-benefit analysis of private Mexican education versus public education in the U.S.. Put simply, families understand that the public education system in Mexico inadequately meets the needs of their children, but to access private education in Mexico, they need to access the U.S. economic system. For Mexican immigrants living in the U.S., education is seen as a pathway to this economic system to escape the exploitative labor markets fueled by a capitalist U.S. economy that excludes Mexicans from minimum wage requirements, healthcare benefits, workman’s compensation insurance, and social security plans (Velez-Ibañez & Heyman, 2017). Many Tijuana families with mixed immigration status face financial barriers to Mexican private education, making daily border crossing their most viable option (Bach, 2020).

Tessman & Koyama describe sacrifices made by transfronterizx families, such as temporarily living in the U.S. to have U.S.-born children and relinquishing parental rights to U.S.-based relatives for residency verification. While this research establishes foundational insights into transfronterizx caregiving, our understanding of caregivers of autistic children specifically is still limited. It is reasonable to infer that motivators for these families align with broader patterns seen among border caregivers. However, literature on Mexican-immigrant caregivers of autistic children suggests that intersecting challenges around immigration and caregiving stress create compounding disparities (Luelmo et al., 2020). Thus, while existing research on Latine families outlines general disparities, the unique experience of those residing along the U.S./Mexico border adds important context for understanding resilience and challenges among caregivers of autistic children in this region.

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 Testimonios (storytelling; Annamma et al., 2013) and disability-critical race theory (DisCrit) add nuance to the experiences of Mexican-immigrant mothers. Cioè-Peña (2020) examined the migration decisions and motivating factors of three Mexican mothers. Cioé-Peña challenges the commonly held belief that Mexican-immigrant families migrate in search of a better life; rather, the families in her study agree their life would be better in Mexico, despite having fewer resources for their autistic children. Cioe-Peña’s central argument is that the medical-educational model obligates Mexican mothers to stay in the United States—primarily because autism knowledge, educational attainment, and resources are believed to be better. Specifically, she claims that autism classification or labeling adds “an additional sense of guilt, fear, and manipulation to a community of women who are already enduring several intense stressors” (Cioè-Peña, 2020, p. 19).

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 transfronterizx and border caregivers.

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 transfronterizx from the Tijuana/San Diego border. The third author is a Mexican–American cis-gendered Gay man, who identified as transfronterizo had to navigate both cultures and countries as a high school student and graduate college student. These experiences inform how they approach research and are centered on seeking equitable and just autism treatment and services for historically marginalized communities.

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 transfronterizx (e.g., “¿Como esta la linea?”), and by referral from community partners. Participants then were able to contact the research team through email, phone, or WhatsApp (popular encrypted communication app). We included mothers in the study who had autistic children between the ages of 2 and 17 who either (1) crossed the border from Tijuana to San Diego for their children to have access to any autism-related services, (2) have moved from Tijuana to San Diego in pursuit of general autism services, or (3) are looking to pave a path which will allow them to access general autism services in the United States while living in Mexico. Over 5 months, a total of 21 mothers expressed interest in participating in the study, 13 completed the consent and demographic forms, while only 11 completed the interview process. By the end of the interview period, no additional participants were identified or agreed to participate.

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 transfronterizx caregiver needs, which informed the interview questions. A transfronterizx doctoral student from Tijuana reviewed the protocol for cultural and linguistic fit. Final research materials, incorporating all partner feedback, were approved and used for 11 interviews conducted by the first author via Zoom or WhatsApp audio.

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 (SD) = 11.1) while children had an average age of 9.6 (SD = 5.63). Out of the 11 mothers, only two resided in the United States, and only one mother was actively crossing the border to receive autism services. Overall, three mother-child dyads were dual citizens, six children were dual citizens while their parents were only Mexican citizens, and two children were only Mexican citizens. Table 1 summarizes the demographic information of the 11 mother-child dyads.

Table 1.

Participant demographic information.

Participant	Age	Education level	Income category	Child’s age	Child’s age of diagnosis	Child’s sex	Current country of residence	Parent citizenship	Child citizenship
Patricia	37	BA	$30,000–$39,000 (D)	15	2	Male	USA	USA–MEX	USA–MEX
Paulina	36	BA	10,000–19,000 (P)	9	3.5	Female	MX	MEX	USA–MEX
Lourdes	37	Some middle school	70,000–79,000 (P)	21	3	Male	MX	MEX	USA*–MEX
Maria Jose	42	BA	$10,000–$19,000 (D)	14	2	Male	MX	MEX	USA–MEX
Stefania	29	BA	100,000 + (P)	6	3	Male	MX	MEX	MEX
Manuela	30	Technical school	$60,000–$69,000 (D)	4	3	Male	USA	USA–MEX	USA–MEX
Cassandra	51	Technical school	$10,000–$19,000(D)	16	3	Male	MX	MEX	USA–MEX
Camila	33	Some college	70,000–79,000 (P)	5	3	Male	MX	MEX	MEX
Julieta	33	Masters	40,000–49,000 (P)	7	2	Male	MX	MEX	USA–MEX
Eva Corina	34	Some middle school	9999 or less (P)	6	5	Male	MX	MEX	MEX
Michelle	34	Masters	$10,000–$19,000 (D)	3	1.1	Male	MX	USA–MEX	USA–MEX

Note: P = Pesos, D = Dollars. *Indicates ongoing immigration process.

Table 2.

Codes, definitions, and frequencies.

Global theme	Parent codes	Child codes	Child sub-codes	Definition	Frequency
State of constant contrast between Mexico and the United States	Benefits/Reasons pursuing the United States			Parent describes the benefits and accomplishments they envision or experience when moving/traveling to the United States for ASD services, or parent states the reason they make the decision to move to the United States.	14
		Academic		Parents describe that their children will have better educational opportunities as a benefit of pursuing the United States.	5
		Child’s behavior		Mother describes child’s behavior as a reason why they are pursuing the United States.	2
		Considering the United States as a solution		Any instance when a parent describes traveling to the United States as the last straw to find resources such as therapy, educational opportunity, or even exploring with no idea of what they will find.	5
	Dissatisfaction with Mexican system			Parent describes ways in which Mexican service system for ASD is limited and is not happy with it.	54
		Education system		Parent describes how Mexican education system is not providing the resources/success they expect for their child. Parent may also describe how education system does not meet child’s needs and lack of support within the school system. This may include lack of educational opportunities such that a school may deny attendance for the student or does not have the appropriate resources to meet the child’s needs.	30
		Lack of care/service coordination		Families are not included in the services; service providers do not provide education and resources postdiagnosis and do not point parents toward the next step.	4
		Lack of options		Parents describe how the ASD service system is saturated or there are not enough options, which makes them not be happy with their care.	10
		Therapy system		Parent describes how Mexican therapy system is not providing the resources/success they expect for their child. Parent may also describe how therapy system does not meet child’s needs; parent may see therapist/provider system engage in unethical behavior, or that therapists are not skilled enough.	7
		Providers saying there’s no more options		Mexican providers report that they do not think child will improve and ask parents to accept child’s fate.	2
		Services in Mexico too expensive		Parent describes how services in Mexico are far too great. This could be a motivator for searching for services in the United States or for parents to be in search for better opportunities.	30
		Slow therapy progress		Parents describe that the therapy child receives in Mexico is slow to show progress.	10
	Satisfaction with services in Mexico			Parent describes positive aspects of services received in Mexico.	14
		Early childhood services		Parent describes satisfaction with early childhood services such as daycare.	10
		Satisfaction with school system		Parent describes being satisfied with school system, including staff and teachers.	5
Active pursuit of autism services in the United States	Goals of moving to the United States			Parent describes what they hope will be accomplished/wanted to accomplish when they moved to the United States	26
		School-related goals		Parent describes how their pursuit of services in the United States is motivated by school-related goals.	11
		Long-term life goals		Parent describes how their pursuit of services in the United States is motivated by long-term life goals.	7
		Successful and effective therapies		Parent describes how their pursuit of services in the United States is motivated by the hope they will secure successful and effective therapies.	19
	Barriers accessing services in the United States			Parents describe barriers they experienced or foresee when attempting to move to the United States	37
		Communication with providers		Caregivers report limitations in their communication with providers including therapists and educators.	2
		Immigration barriers		Parent describes citizenship issues such as legal status, not understanding immigration law as a barrier to successfully pursuing ASD services in the United States. Parent may also describe the process of crossing as difficult.	17
		Service access disparity		Caregiver describes issues with obtaining services once in the United States due to lack of knowledge, medical insurance, and may impact service access if and when they arrive to the United States.	13
		Cost of living in the United States		Parent describes how the increased cost of living in the United States will be/is a barrier to living in the United States.	7
		Medical insurance		Parent describes how having medical insurance or lack of knowledge around how to secure medical insurance complicates pursuing services in the United States.	3
Autism diagnosis and services as catalyst to pursue services in the United States	ASD diagnosis process			Parent describes experiences pursuing an ASD diagnosis. Parent may mention who provided the diagnosis, the various providers they visited, and overall experience with process.	44
		Autism as identity		Parent accepts and recognizes child’s identity as autistic.	4
		Barriers to diagnosis in Mexico		Doctors, therapist, and specialist, creating or posing barriers to successfully receive the diagnosis, could provide alternative justifications to the behaviors.	17
			Complex diagnosis process	Parent describes the time elapsed between autism concern, multiple doctor visits, multiple provider, and specialist visits which finally resulted in an ASD diagnosis.	14
			Non-acceptance and grief over diagnosis	Parent describes their emotional response to receiving the ASD diagnosis.	12
Immigration: Citizenship status and willingness to sacrifice	Facilitators of moving to the United States			Factors which are facilitating the pursuit of moving to the United States.	17
		Access to insurance		Parent describes how they/their family have medical insurance in the United States, and this facilitates the pursuit of autism services in the United States.	1
		Caregiver is bilingual		Caregiver speaks English which facilitates/believes will facilitate accessing services once in the United States.	1
		Child is a U.S. citizen		Child being a U.S. citizen is a facilitator to moving to the United States.	6
		Caregiver is a U.S. citizen		Parent identifies their own U.S. citizenship or another family member as a mechanism which facilitated their transfronterizo process.	7
	Sacrifice			Parent is willing or feels obligated to sacrifice to achieve the move such as selling a home, giving up guardianship, or other act which needed to be done to accomplish move/service seeking.	14
		Asset sacrifice		Parent makes an asset sacrifice such as selling a house, changing jobs, losing a job, or other financially impacting decisions to move to the United States.	8
		Family sacrifice		Parent describes making familial sacrifices such as giving up guardianship, becoming a transnational family, and separating siblings to facilitate the process of pursuing autism services in the United States.	8
		Safety sacrifice		Parent describes how they sacrifice their own safety and child safety to pursue autism services in the United States.	7
Family involvement: Supportive and unsupportive	Family involvement			Parent described family’s role while looking for an ASD diagnosis. This may describe how family notices ASD symptoms, supported the ASD diagnosis process, even opposed the ASD diagnosis.	20
		Family members disagreeing about diagnosis		Parent describes family members dismissing concerns over developmental delay, signs of atypical development, and disapprove/dismiss diagnosis.	10
		Family pressure to move to the United States		Parent describes how their family makes comments around how for their child with autism to make progress or receive what they perceive as proper attention they should pursue services in the United States.	5
		Family support		Family supports the move/pursuit of moving to the United States or a family member works on the other side of the border.	14
		Large family barriers		Parent describes how other members of their family such as other children, parents, grandparents, partners, and extended family members do not support pursuing moving to the United States or complicate the pursuit of the move.	11

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, “Soy todo a la misma vez, chef, enfermera, maestra, mamá, coach.”¹ Julieta and her two sons are very close and enjoy each other’s company. She has had partners on and off but as she describes it, “todo gira alrededor de Mauricio.”² She has had to prioritize that relationship.

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 “tuve que vivir con mis tíos para aprovechar la educación en Estados Unidos”³ After High School, she moved back to Tijuana but recently returned to San Diego. Most of her family lives in Tijuana, Tecate, and Sinaloa, Mexico. She is closely connected to her maternal extended family, especially her mother, and her siblings, they “hablamos todos los dias.”⁴ She describes herself as “soy la que trata de que todos se lleven bien, la segunda mano de mi mamá.”⁵ She started to work at age 14 in San Diego and helped put her siblings through college in Tijuana. Raul is her only son.

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, “parece loco o tonto, necesitas darle unas nalgadas.”⁶

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).

Figure 1.

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, “no tiene nada, mi hermana no hablo hasta que tenía cuatro.”⁷ When at 3 years, Raul was still not speaking, and she sought a diagnosis even though her belief was, “mi hijo no tiene nada.”⁸ She wanted her mother-in-law to leave her alone, but in the end, her son was diagnosed. No one in her family knew anything about autism. Learning about her son’s diagnosis was a relief, and she could finally tell her husband and his family that “el comportamiento del niño no es su culpa.”⁹ She was also overcome with despair, “¿porque mi hijo, porque yo?¹⁰”

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 “tenemos un niño con autismo y vamos a investigar como podemos ayudarle.¹¹” In contrast, some mothers experienced family disagreements over pursuing an autism diagnosis. Families who were not supportive dismissed mothers’ concerns with comments such as “. . . está muy chiqueada, por eso no habla, es la primera hija, es normal.¹²” Their comments justified and attributed the developmental delay to the child being spoiled, gender differences in development (e.g., “boys develop slower than girls), poor parenting, and mothers’ overreaction or being unreasonable. For Julieta, both positive and negative family involvements influenced her to consider the U.S. autism service system as her family commented “. . . pues te tienes que ir . . . Mauricio va a tener todo [en San Diego] . . . te pagan por cuidar a tus hijos, te van a dar ayudas.”¹³ Her brother, Mauricio’s uncle, has strongly rejected her son, and this caused her a lot of strain. When she asks her mother for help with Mauricio, she says, “encuentra a alguien mas que te ayude, no te puedo ayudar.”¹⁴ At the time of the interview, she described herself as being in an “estado de depresion y devastación.”¹⁵

Julieta struggles with this decision amid food, housing insecurities, and pressures from family and professionals who say, “Te tienes que ir, tus hijos van a tener todo allá.”¹⁶ But she can’t help thinking, “Que voy a hacer cuando esté allá, donde voy a vivir, no conozco a nadie.”¹⁷

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, “Comió vidrio, le sangraba la boca, yo estaba histérica, pensé: ‘Nunca podré descansar, necesito ayuda y aquí no la encuentro.’”¹⁸ Her son has had a lot of medical issues, and the medical system in Mexico has been slow. Because Mauricio is a U.S. citizen, Julieta tried to pursue services in the United States through the federally funded Special Supplemental Nutrition Program for Women, Infants, and Children (WIC), as a result she lost her visa, an experience she did not share with her family. She stated, “Si perdi mi visa por pedir comida, ahora imaginate si pido terapia”¹⁹ For her, the United States is “Extranjero, Ojalá pudiera ir y venir, no tener que vivir allá, pero mis hijos son lo primero.”²⁰

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 transfronteriza with U.S. citizenship, she has been able to access autism services (e.g., education, healthcare, and therapies) in both countries. However, navigating U.S. autism services has not been easy. When living in San Diego, she waited for in-home Applied Behavioral Analysis (ABA) services through the regional center for months and was told she was not eligible due to her husband’s income. This prompted her to move back to Tijuana to receive private early intervention. As a result of her husband’s car accident and subsequent social security benefits, she returned to the United States, as her son would now be eligible for medical on a temporary basis. Manuela continued to seek early childhood services in Tecate and Tijuana, crossing twice a week. The COVID-19 pandemic extended her medical benefits but she was told she would eventually lose them—unless she was divorced and living on a single income. At the time of the interview, Manuela and her husband were in the process of filing for divorce, as she stated, “No se si estamos haciendo bien o mal, pero estamos pensando en el niño.”²¹

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 “coyote” (a person who smuggles immigrants across the Mexico–United States border), she knew her family would strongly oppose this decision. He charged her U.S.$1000 but said “si no tenia el dinero, le podia pagar de otra manera.”²² She agreed. The coyote abandoned her and her son in the desert; Eva and Saul walked back miles to cross back into Tijuana. Through tears, she expressed her regret for putting their life at risk. At the time of the interview, 3 months had passed and Eva was regaining Saul’s father’s trust and trying to explain to him why she made that decision. Only another mother could understand her level of desperation, she recounted. A second diagnosis through DIF helped her gain more information regarding the severity of Saul’s diagnosis and therapy which led her closer to acceptance. Outside of this limited support, she was still struggling to access autism services and special education services in Tijuana as they are mostly privatized.

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 transfronterizx caregiver literature, we find that limited Mexican public and subsidized health services and unaffordable private services in Mexico drive families to consider other options. However, border families face additional struggles in navigating the autism service system in the United States—compounding autism service disparity. We expand on the limited literature documenting the experiences of Mexican-immigrant caregivers of autistic children (see Figure 1 for a model illustrating these systems).

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 transfronterizx literature, families frequently navigate the complexities of mixed-status households. While children in these households may be eligible for social welfare services or public assistance, caregivers sometimes choose not to access these resources due to concerns related to their own citizenship status (Menjívar et al., 2016). Furthermore, we found that mothers who came from middle socio-economic backgrounds and were U.S. citizens tended to fit the transfronterizx categorization. Transfronterizx caregivers of autistic children, while privileged in some ways, also had to navigate services bi-nationally and maintain some or all services in Mexico while they learned to navigate the autism service system in the United States, which often took months to years.

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 transfronterizx families as they are navigating health and education systems in two countries with drastically different processes. While there is growing literature highlighting diagnostic and service disparities for Latine families in the United States, we add to our understanding of Mexican-immigrant families navigating diagnostic processes in two countries, and the many forms that they resist these disparities transnationally.

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 “what is a good school for autistic children?”. The specialized view of autism is again materialized through the costly tuition and therapy rates, forcing parents to leverage their transnational status to obtain services in the United States, due to their lack of financial resources. This urgency, which is reinforced by the medical, educational, and familial system, prompts parents to engage in the U.S./Mexico autism service contrast and explore both pathways to pursue autism services. The pathway is then facilitated by micro-level and meso-level factors which may or may not result in the successful attainment of autism services in the United States.

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, familismo, family cohesion and connectedness, is often viewed as a protective or resilient cultural factor (Magaña & Smith, 2006). However, mothers in our study had a more complex experience of family support. Some caregivers in our study reported receiving support from immediate and extended family, as did Manuela, and rejection—at the other extreme, as did Julieta. Conflict and estrangement from family members was largely due to disagreements over their child’s diagnosis. Thus, our findings coincide with an “over-idealization” of the Latine family support system as mothers in our study often experienced conflict with their family related to their child’s diagnosis and parenting practices (Arévalo-Flechas et al., 2014; DuBay, 2022). This speaks to the need to explore individual level family supports as these will be highly idiosyncratic and can serve both protective and risk factors.

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 Eva. This study builds on and nuances Cioè-Peña’s (2020) research with Mexican-immigrant mothers. Transfronterizx and border mothers not only navigate complex decisions, such as relocating to the United States or living transnationally, but also actively draw upon their resilience, resourcefulness, and familial networks to address their children’s needs. The transfronterizx mothers in this study described leveraging their knowledge of both systems—on either side of the border—to advocate for their autistic children and secure critical resources. These decisions, while influenced by societal pressures from family and community, also demonstrate the mothers’ capacity to weigh risks, utilize binational systems of support, and prioritize their children’s well-being in strategic ways.

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 transfronterizx caregivers and caregivers living at the border, caregiver education programs might expand topics related to accessing services bi-nationally, expanding strategies for families crossing the border daily, and family well-being and quality of life-related to binational stressors (e.g., acculturation stress, family separation, long daily commutes, and mixed citizenship status).

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 transfronterizx families and mixed-status families. Families often experience multiple barriers to navigating both systems and would benefit immensely from compassionate and empathic services for their children that seek to understand the additional burden some families may face while navigating autism services bi-nationally. Mexican autism service providers in border cities could also help caregivers make informed decisions regarding their transition to the United States and the service options in Mexico they might consider as they navigate through this transition.

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., Autismo por Autistas), community events (e.g., Dia Azul), and started petitions—calling for the establishment of laws that support and improve the livelihoods of autistic people in Mexico (e.g., Ley de Autismo Estatal y Municipal en Puebla). In parallel, DIF in Baja California has committed to opening up a third center, making the state a pioneer in autism services. Policy makers should consider the unique needs of transfronterizx families when designing programs for autism services. Initiatives could include binational health insurance plans that cover services in both countries (e.g., Sistemas Medicos Nacionales, S.A. de C.V. [SIMNSA]), streamlined processes for transferring medical records and treatment plans across borders, and support for transnational families in terms of legal and logistical assistance for cross-border travel. Furthermore, policies that reduce the financial burden on transfronterizx families, such as subsidies or sliding scale fees for autism services, could significantly impact their ability to access necessary care. In addition, policies which create avenues and provide support for public health initiatives to improve capacity building among autism service providers are needed. Creating a bidirectional learning community grounded in providing high-quality evidence-based therapies for autistic people may serve as a protective factor by increasing service access and eradicating the need to uproot families, disrupt family systems, or cause immense financial strain.

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 trasnfronterizx caregivers, as only one of the mothers in this study was actively crossing the U.S.–Mexico border. More research is needed to explore the experiences of daily border commuters and trasnfronterizx—those who experience regular border crossing to access services. Finally, as most mothers were from the urban city of Tijuana, this study is not representative of the majority of transfronterizx mothers as it does not capture the additional barriers families living in rural borders face when pursuing autism services.

Future research

This study opens several avenues for future research. Longitudinal studies could examine the long-term outcomes of children with autism from tranfronterix families, focusing on their developmental progress and integration into society. Comparative studies between transnational and non-transnational families could shed light on the specific impacts of cross-border dynamics on family functioning and child development. In addition, qualitative research exploring the personal narratives of more border families from additional crossing points could provide deeper insights into the emotional and social impacts of their decisions and sacrifices.

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 tranfronterizx families.

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

F.A.C.: Conceptualization; Data curation; Formal analysis; Investigation; Methodology; Project administration; Resources; Validation; Visualization; Writing—original draft.

A.D.: Formal analysis; Funding acquisition; Supervision; Validation; Visualization; Writing—original draft; Writing—review and editing.

P.L.: Conceptualization; Data curation; Methodology; Writing—original draft; Writing—review and editing.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Dr. Castellón’s and Dr. Dueña’s time spent writing this manuscript was supported by the Institute of Education Sciences, U.S. Department of Education, through Grant [R324B230011]. The opinions expressed are those of the authors and do not represent views of the Institute or the U.S. Department of Education.

ORCID iDs

Fernanda A Castellón

Ana Dueñas

Supplemental material

Supplemental material for this article is available online.

Notes

References

Annamma

S. A.

Connor

Ferri

(2013). Dis/ability critical race studies (DisCrit): Theorizing at the intersections of race and dis/ability. Race Ethnicity and Education, 16(1), 1–31. https://doi.org/10.1080/13613324.2012.730511

Arévalo-Flechas

L. C.

Acton

Escamilla

M. I.

Bonner

P. N.

Lewis

S. L.

(2014). Latino Alzheimer’s caregivers: What is important to them? Journal of Managerial Psychology, 29(6), 661–684. https://doi.org/10.1108/JMP-11-2012-0357

Bach

A. J.

(2020). Education in citizenship on the U.S./Mexico Border: The language and literacy instruction of emergent bilingual. Transfronterizx Students. Anthropology & Education Quarterly, 51, 233–252. https://doi.org/10.1111/aeq.12330

Bak

M. Y. S.

Dueñas

A. D.

Reilly

A. M.

et al. (2023). The Demographics of autistic individuals in social communication evidence-based practice: A systematic review. Review Journal of Autism and Developmental Disorders. Advance online publication. https://doi.org/10.1007/s40489-023-00424-z

Bernal

Bonilla

Bellido

(1995). Ecological validity and cultural sensitivity for outcome research: Issues for the cultural adaptation and development of psychosocial treatments with Hispanics. Journal of Abnormal Child Psychology, 23, 67–82. https://doi.org/10.1007/BF01447045

Buzhardt

Rusinko

Heitzman-Powell

Trevino-Maack

McGrath

(2016). Exploratory evaluation and initial adaptation of a parent training program for Hispanic families of children with autism. Family Process, 55(1), 107–122. https://doi.org/10.1111/famp.12146

Chavez

(2016). Border lives: Fronterizos, transnational migrants, and commuters in Tijuana. Oxford University Press.

Chen

Yao

Lin

Yuan

Wang

Zhang

(2024). Application of the community-based participatory research in autism spectrum disorder: A scoping review. Review Journal of Autism and Developmental Disorders. Advance online publication. https://doi.org/10.1007/s40489-024-00446-1

Chlebowski

Magaña

Wright

Brookman-Frazee

(2018). Implementing an intervention to address challenging behaviors for autism spectrum disorder in publicly-funded mental health services: Therapist and parent perceptions of delivery with Latino families. Cultural Diversity and Ethnic Minority Psychology, 24, 552–563.

10.

Choperena-Aguilar

Ramirez-Santiago

Díaz

(2021). Measuring geospatial healthcare access to primary level facilities in Mexico: A GIS-based diagnosis analysis. Ciencia & Saúde Coletiva, 26(Suppl. 1), 2471–2482. https://doi.org/10.1590/1413-81232021266.1.40872020

11.

Cioè-Peña

(2020). Wanting to leave; needing to stay: Issues for undocumented mothers of children with disabilities. Multiple Voices—Disability, Race and Language Intersections in Special Education, 20(2), 6–23. https://doi.org/10.56829/2158-396X-20.2.6

12.

Clark

Nyaupane

(2024). Cross-border tourism and community solidarity at a militarized border: A photo elicitation approach. Journal of Travel Research, 63(7), 1776–1796. https://doi.org/10.1177/00472875231195734

13.

Cohen

S. R.

Miguel

Trejos

(2023). ASD diagnosis and treatment experiences among Mexican heritage families. Journal of Autism and Developmental Disorders, 53(3), 1017–1033. https://doi.org/10.1007/s10803-022-05512-3

14.

Dababnah

Kim

Magaña

Zhu

(2023). Parents taking action adapted to parents of Black autistic children: Pilot results. Journal of Policy and Practice in Intellectual Disabilities, 20(1), 18–32. https://doi.org/10.1111/jppi.12423

15.

DuBay

(2022). Cultural adaptations to parent-mediated autism spectrum disorder interventions for Latin American families: A scoping review. American Journal of Speech-Language Pathology, 31(3), 1517–1534. https://doi.org/10.1044/2022_AJSLP-21-00239

16.

Fierros

C. O.

Delgado Bernal

(2016). Vamos a platicar: The contours of pláticas as Chicana/Latina feminist methodology. Chicana/Latina Studies, 15(2), 98–121.

17.

Frank

A. W.

(2012). Practicing Dialogical Narrative Analysis. In Varieties of Narrative Analysis (pp. 33–50). 2455 Teller Road, Thousand Oaks California 91320 United States: SAGE Publications, Inc. https://doi.org/10.4135/9781506335117

18.

Ganster

Collins

(2017). Binational cooperation and twinning: A view from the U.S.–Mexican border, San Diego, California, and Tijuana, Baja California. Journal of Borderlands Studies, 32(4), 497–511. https://doi.org/10.1080/08865655.2016.1198582

19.

Gonzalez

E. C.

Summers

Mueller

Hernandez

Gil-Lopez

Garcia

D. C.

Lopez

M. E.

(2015). Developmental surveillance and referral in a traditionally medically underserved border community. Maternal and Child Health Journal, 19, 2323–2328. https://doi.org/10.1007/s10995-015-1741-y

20.

Guendelman

Jasis

(1990). Measuring Tijuana residents’ choice of Mexican or U.S. health care services. Public Health Reports, 105(6), 575–583.

21.

Harris

Barton

E. E.

(2016). Autism services in Mexico: A qualitative survey of education professionals. International Journal of School & Educational Psychology, 5(1), 1–13. https://doi.org/10.1080/21683603.2016.1155514

22.

Individuals with Disabilities Education Act, 20 U.S.C. § 1400 (2004)

23.

Ingram

Duenas

Castro

Vázquez

Crocker

Larson

De Zapien

Torres

Carvajal

(2023). The use of qualitative methods to guide the development of the Border Resilience Scale in a participatory research study. International Journal of Environmental Research and Public Health, 20, 95703. https://doi.org/10.3390/ijerph20095703

24.

Koyama

Gonzalez-Doğan

(2021). Displacement, replacement, and fragmentation in order making: Enacting sovereignty in a US-Mexican border state. Ethnography, 22(1), 70–87. https://doi.org/10.1177/1466138119845395

25.

Lee

(2013). Human trafficking and border control in the global south. In Franko

A. K.

Bosworth

(Eds.), The borders of punishment: Migration, citizenship, and social exclusion (pp. 128–145). Oxford University Press. https://doi.org/10.1093/acprof:oso/9780199669394.001.0001

26.

Lopez

(2014). Sociocultural perspectives of Latino children with autism spectrum disorder. Best Practices in Mental Health: An International Journal, 10(2), 15–31.

27.

Lopez

Magaña

Morales

Iland

(2019). Parents taking action: Reducing disparities through a culturally informed intervention for Latinx parents of children with autism. Journal of Ethnic & Cultural Diversity in Social Work, 28(1), 31–49.

28.

Lord

Pickles

McLennan

Rutter

Bregman

Folstein

Fombonne

Leboyer

Minshew

(1997). Diagnosing autism: Analyses of data from the Autism Diagnostic Interview. Journal of Autism and Developmental Disorders, 27, 501–517. https://doi.org/10.1023/a:1025873925661

29.

Lord

Rutter

Goode

et al. (1989). Austism diagnostic observation schedule: A standardized observation of communicative and social behavior. J Autism Dev Disord, 19, 185–212. https://doi.org/10.1007/BF02211841

30.

Luelmo

Sandoval

Kasari

(2020). Undocumented Mexican mothers of children with autism: Navigating the health care and educational service systems. International Journal of Developmental Disabilities, 68(4), 567–577. https://doi.org/10.1080/20473869.2020.1850159

31.

Magaña

Lopez

Machalicek

(2017). Parents taking action: A Psycho-Educational intervention for Latino parents of children with autism spectrum disorder. Family Process, 56(1), 59–74. https://doi.org/10.1111/famp.12169

32.

Magaña

Smith

L. E.

(2013). The use of the Autism Diagnostic Interview-Revised with a Latino population of adolescents and adults with autism. Journal of Autism and Developmental Disorders, 43, 1098–1105.

33.

Magaña

Smith

M. J.

(2006). Psychological distress and well–being of Latina and non–Latina white mothers of youth and adults with an autism spectrum disorder: Cultural attitudes towards coresidence status. American Journal of Orthopsychiatry, 76(3), 346–357. https://doi.org/10.1037/0002-9432.76.3.346

34.

Mandell

D. S.

Wiggins

L. D.

Carpenter

L. A.

Daniels

DiGuiseppi

Durkin

M. S.

, . . . Kirby

R. S.

(2009). Racial/ethnic disparities in the identification of children with autism spectrum disorders. American Journal of Public Health, 99(3), 493–498.

35.

McIntyre

Song

(2019). The U.S. Affordable Care Act: Reflections and directions at the close of a decade. PLOS Medicine, 16(2), Article e1002752. https://doi.org/10.1371/journal.pmed.1002752

36.

Mendoza Cota

J. E.

(2017). Economic integration and cross-border economic organizations: The case of San Diego-Tijuana. Estudios Fronterizos, 18(35), 22–46. https://doi.org/10.21670/ref.2017.35.a02

37.

Menjívar

Abrego

Schmalzbauer

(2016). Immigrant families. Polity.

38.

Minkler

Wallerstein

(2008). Community based participatory research for health: Process to outcomes (2nd ed.). Jossey Bass.

39.

Ojeda

(1993). Familias transfronterizas en Tijuana: Migración y trabajo internacional. In Ojeda

López

(Eds.), Familias transfronterizas en Tijuana-San Diego: Dos estudios complementarios (pp. 9–50). El Colegio de la Frontera Norte.

40.

Oliveira

(2018). Motherhood across borders: Immigrants and their children in Mexico and New York. New York University Press.

41.

Ortiz

Rodriguez

Pozar

Moran

Cheney

(2024). Seeking care across the US-Mexico border: The experiences of Latinx and Indigenous Mexican caregivers of children with asthma or respiratory distress. Social Science & Medicine, 347, 2024. https://doi.org/10.1016/j.socscimed.2024.116736

42.

Paat

Y. F.

Green

(2017). Mental health of immigrants and refugees seeking legal services on the US-Mexico border. Transcultural Psychiatry, 54(5–6), 783–805. https://doi.org/10.1177/1363461517746316

43.

Palinkas

L. A.

Horwitz

S. M.

Green

C. A.

Wisdom

J. P.

Duan

Hoagwood

(2015). Purposeful sampling for qualitative data collection and analysis in mixed method implementation research. Administration and Policy in Mental Health and Mental Health Services Research, 42(5), 533–544.

44.

Parish

Magaña

Rose

Timberlake

Swaine

J. G.

(2012). Health care of Latino children with autism and other developmental disabilities: Quality of provider interaction mediates utilization. American Journal on Intellectual and Developmental Disabilities, 117(4), 304–315. https://doi.org/10.1352/1944-7558-117.4.304

45.

Pérez-Soto

Trolle-Silva

Valdés

Sánchez-Morales

Velázquez-Fernández

La Medina

Herrera

(2023). Timely access to essential surgery, surgical workforce, and surgical volume: Global surgery indicators in Mexico. Global Health: Science and Practice, 11, Article e2100745. https://doi.org/10.9745/GHSP-D-21-00745

46.

Pew Research Center. (2023). What we know about unauthorized immigrants living in the U.S. https://www.pewresearch.org/short-reads/2023/11/16/what-we-know-about-unauthorized-immigrants-living-in-the-us/

47.

Relaño Pastor

A. M

. (2007) On border identities: Transfronterizo students in San Diego. Diskurs Kindheits- und Jugendforschung 2(3), 263–277.

48.

Rodríguez Aguilar

Saucedo

Landin

Aguilar

Saucedo

. (2023). Out-of-pocket and catastrophic health spending in Mexico in the face of the COVID-19 pandemic. EAI Endorsed Transactions on Pervasive Health and Technology, 9. https://doi.org/10.4108/eetpht.9.3583

49.

Saldaña

J. M.

(2015). The coding manual for qualitative researchers (3rd ed.). Sage.

50.

Steinbrenner

J. R.

McIntyre

Rentschler

L. F.

Pearson

J. N.

Luelmo

Jaramillo

M. E.

Boyd

B. A.

Wong

Nowell

S. W.

Odom

S. L.

Hume

K. A.

(2022). Patterns in reporting and participant inclusion related to race and ethnicity in autism intervention literature: Data from a large-scale systematic review of evidence-based practices. Autism, 26, 2026–2040. https://doi.org/10.1177/13623613211072593

51.

Tessman

Koyama

(2017). Borderland parentocracy: Mexican parents and their transfronterizo children. Journal of Latinos and Education, 18(4), 328–339. https://doi.org/10.1080/15348431.2017.1394857

52.

U.S. Census Bureau. (n.d.). Poverty rates of southern border, by region and state. 2020 American Community Survey. https://data.census.gov/

53.

Vargas Valle

E. D

. (2014). A decade of changes: Formal education and transborder linkages of young people in highly urbanized areas of the northern border. Estudios Fronterizos, 16(32), 74–96. https://www.scielo.org.mx/scielo.php?pid=S0187-69612015000200005&script=sci_arttext&tlng=en

54.

Velez-Ibañez

C. G.

Heyman

(2017). The U.S.-Mexico transborder region: Cultural dynamics and historical interactions. The University of Arizona Press.

55.

Wallace

S. P.

Mendez-Luck

Castañeda

(2009). Heading south: Why Mexican immigrants in California seek health services in Mexico. Medical Care, 47(6), 662–669. https://doi.org/10.1097/MLR.0b013e318190cc95

56.

Yang

Yao

Chen

Zhuang

Wang

Zhang

Lee

G. T.

(2018). A pilot study of a culturally adapted early intervention for young children with autism spectrum disorders in China. Journal of Early Intervention, 40(1), 52–68. https://doi.org/10.1177/1053815117748408

57.

Young

M. T.

Pebley

A. R.

(2017). Legal status, time in the USA, and the well-being of Latinos in Los Angeles. Journal of Urban Health: Bulletin of the New York Academy of Medicine, 94(6), 764–775. https://doi.org/10.1007/s11524-017-0197-3

58.

Zuckerman

K. E.

Chavez

A. E.

Murillo

C. R.

Lindly

O. J.

Reeder

J. A.

(2018). Disparities in familiarity with developmental disabilities among low-income parents. Academic Pediatrics, 18(8), 944–951. https://doi.org/10.1016/j.acap.2018.06.011

59.

Zuckerman

K. E.

Sinche

Cobian

Cervantes

Mejia

Becker

Nicolaidis

(2014). Conceptualization of autism in the Latino community and its relationship with early diagnosis. Journal of Developmental & Behavioral Pediatrics, 35(8), 522–532. https://doi.org/10.1097/dbp.0000000000000091

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