Barriers Faced by Latino Parents in Accessing Autism Services: A Review of Literature
By Natalie Lopez
This issue of NASET’s Autism Spectrum Disorder series was written by Natalie Lopez. Over the past few decades, there has been a notable increase in the prevalence of autism spectrum disorder (ASD), leading to heightened awareness of the condition. However, research indicates that there are still significant disparities in the diagnosis and access to services for the Latino population in the United States. This literature review aims to examine and address the specific challenges faced by Latino families with children diagnosed with ASD. Intending to promote a more inclusive and equitable system that ensures all families, regardless of their background, have access to the necessary support and resources to assist their children with ASD.
Abstract
Over the past few decades, there has been a notable increase in the prevalence of autism spectrum disorder (ASD), leading to heightened awareness of the condition. However, research indicates that there are still significant disparities in the diagnosis and access to services for the Latino population in the United States. This literature review aims to examine and address the specific challenges faced by Latino families with children diagnosed with ASD. Intending to promote a more inclusive and equitable system that ensures all families, regardless of their background, have access to the necessary support and resources to assist their children with ASD.
Keywords: autism spectrum disorder (ASD), families, Latino, services, limited English proficiency (LEP), diagnosis
Introduction
Autism spectrum disorder (ASD) is a neurodevelopmental disorder that affects individuals from diverse ethnic and cultural backgrounds (Centers for Disease Control and Prevention, 2023). Over the past few decades, the prevalence of ASD has been steadily increasing, with the latest data indicating that 1 in 36 children are identified with ASD (Centers for Disease Control and Prevention, 2023). Making ASD one of the most common neurodevelopmental disorders among children today. However, despite the growing awareness and understanding of ASD, significant disparities persist in terms of access to diagnosis services and support for families, particularly among Latino parents (Burke et al., 2020; Zuckerman et al., 2017).
The Latino population in the United States, as of July 1, 2022, represents the largest racial or ethnic minority, comprising 19.1% of the total population (US Census Bureau, 2023). This diversity presents unique challenges for Latino parents when seeking and obtaining appropriate ASD services for their children. To address these disparities, this literature review will delve into existing research studies, articles, and reports to identify the barriers faced by Latino parents in accessing ASD services. Additionally, it will propose potential solutions and recommendations to alleviate these disparities.
By shedding light on this important issue, the researcher aims to contribute to the development of more inclusive and equitable ASD services for all families, regardless of their cultural and linguistic backgrounds. Recognizing the importance of cultural sensitivity and understanding in providing effective support, the review will emphasize the need for culturally competent practices and policies that empower Latino parents to access and navigate autism services successfully. Ultimately, the goal is to foster a more inclusive and equitable system that ensures all families receive the support and resources they require to help their children with ASD thrive.
Later diagnosis
The research conducted by Magaña et al. (2013), St. Amant et al. (2018), Zuckerman et al. (2014), and Zuckerman et al. (2017) consistently highlights a concerning trend: Latino children are diagnosed with ASD later than their non-Latino counterparts. This delay in diagnosis has significant implications, as it leads to a missed opportunity for crucial early intervention services. Magaña et al. (2013) discovered through their questionnaire-based study that white children were diagnosed with ASD almost a year earlier than Latino children. This discrepancy in timing is particularly worrisome, as early intervention is widely recognized as a key component in improving outcomes for children with ASD. Furthermore, the study revealed that only 31.7% of Latino mothers reported that their healthcare providers took proactive action, indicating a lack of awareness or responsiveness to their concerns (Magaña et al., 2013). St. Amant et al. (2018) conducted a retrospective chart review and found that signs of ASD were present in Latino children as early as 20 months (about 1 and a half years), but they did not receive a formal diagnosis until they reached 4 years of age. This substantial delay in diagnosis denies Latino children the opportunity to access early intervention services, which are crucial for addressing developmental delays and promoting optimal outcomes.
The studies by Zuckerman et al. (2014) and Zuckerman et al. (2017) further support these findings. They revealed that Latino children were less likely to be identified as having ASD, possibly indicating disparities in access to diagnostic services (Zuckerman et al., 2014; Zuckerman et al., 2017). However, when Latino children did receive a diagnosis, they exhibited more severe and impactful symptoms, suggesting that their needs may be greater by the time they are identified. The consistent evidence from these studies underlines the urgent need to address the delayed diagnosis of ASD in Latino children.
Limited English Proficency
Research has shown that language barriers pose significant challenges for Latino parents when it comes to ASD diagnosis. Zuckerman et al. (2014) stated research that limited English proficiency (LEP) made every step of the diagnostic process more difficult with 50% of the research participants stating it was a major barrier and there were little to no interpreter access. Demonstrating that LEP plays a significant role in this delay, as many Latino parents may not be fluent in English, limiting their ability to effectively communicate concerns and navigate the diagnostic process.
Research has shown that LEP can hinder effective communication between Latino parents and healthcare professionals, which in turn leads to misunderstandings and difficulties in understanding the diagnostic process and treatment options. While the study conducted by St. Amant et al. (2018) did not specifically focus on Latino parents, it highlighted an important finding. The research suggested that parents who primarily speak English as their language they received significantly more support hours for special education (St. Amant et al., 2018). This disparity can result in delays in accessing services and obtaining appropriate interventions for Latino children. It underscores the need for addressing language barriers and ensuring equitable access to support and interventions for all families, regardless of their language proficiency.
Lack of Special Education Knowledge
Researchers Blanche et al. (2015), Burke et al. (2020), Magaña et al. (2013), St. Amant et al. (2018), Zuckerman et al. (2014), and Zuckerman et al. (2017) have conducted research highlighting the impact of Latino parents’ limited knowledge and understanding of special education systems and services on their children’s access to necessary support. The lack of access to information and unfamiliarity with the special education system contribute to this disparity. Blanche et al. (2015) conducted a qualitative study involving 13 Latino families who primarily spoke Spanish. The research revealed that due to language barriers and a lack of understanding of special education, parents often simply signed paperwork without fully comprehending the services their children were receiving. Additionally, the study found that parents’ work commitments often prevented them from attending individualized education plan (IEP) meetings.
Burke et al. (2020) conducted research using a 10-question parent survey, which revealed that Latino parents scored significantly lower (p<.001) in special education knowledge compared to their White counterparts. This lack of knowledge among Latino parents leads to reduced empowerment when navigating the special education system. They are less likely to maintain regular contact with professionals and take initiative in their child’s education. In fact, Latino parents often feel that they should not provide input on their child’s service needs (Burke et al., 2020). This finding is highly significant, given the crucial role of special education in accessing necessary services.
Magaña et al. (2013) conducted a study that revealed Latino children had significantly more unmet services throughout their lives, such as respite care, psychological services, and intensive therapies for ASD, compared to White children (p < .01). This disparity was attributed to lower levels of knowledge and education among Latino parents. The research also found that higher levels of services were associated with higher levels of parent education and access to sources of knowledge. Importantly, Magaña et al. (2013) noted that Latinos with ASD exhibited more maladaptive behaviors due to the lack of access to necessary services.
Zuckerman et al. (2014) utilized purposive sampling in a qualitative research design to gather data from Latino families. Their study revealed that parents perceived a lack of information on ASD within the Latino community. In a separate research study by Zuckerman et al. (2017), parent surveys were mailed out, and the findings indicated that 85% of families faced challenges in terms of their knowledge about ASD. These findings also highlighted that due to the lack of knowledge, Latino families relied on complementary supports and social skills training, while receiving fewer than 1 to no weekly therapy hours, in contrast to White families who received more than 11 weekly therapy hours (Zuckerman et al., 2017). These findings underscore the significant unmet need for services within the Latino community. Several studies have consistently demonstrated that Latino parents encounter difficulties in navigating the complex process of identifying and accessing appropriate services for their children with special needs, including those with ASD.
Cultural Belief and Stigma
Cultural factors and the stigma associated with developmental disorders in the Latino community can contribute to delays in seeking professional help. Within the Latino community, cultural beliefs and stigma surrounding ASD have been identified as significant barriers to early diagnosis and intervention. In the study conducted by Blanche et al. (2015), it was found that Latino families often attribute their child’s behaviors to notions such as “boys will be boys” or the belief that the child will naturally “grow out of it.” Religion is also frequently used as a coping mechanism, with participants in the study stating that they rely on the power of God to heal their child. This belief that developmental delays are caused by supernatural or spiritual reasons can result in delays in seeking professional help for children with ASD.
The stigma surrounding developmental disorders within the Latino community can indeed contribute to a reluctance in acknowledging and addressing ASD symptoms. As noted by Zuckerman et al. (2014), parents in the Latino community often fear that a diagnosis of ASD will bring shame and embarrassment to their family. This fear is rooted in cultural beliefs that view children with disabilities as weak, which contradicts the cultural expectation of males being strong (Machismo) (Zuckerman et al., 2014). Consequently, parents may perceive a diagnosis of ASD as a poor reflection of their parenting abilities. This fear of judgment, concerns about social acceptance, and a lack of awareness and understanding about ASD are all manifestations of cultural stigmas within the Latino community.
Conclusion
Disparities in access to ASD services for Latino parents have been attributed to several factors supported by research. These include late diagnosis, language barriers, lack of awareness and knowledge about ASD within the Latino community, and cultural stigmas. These barriers not only impede the timely identification and intervention of children with ASD but also have a negative impact on the overall well-being and quality of life for Latino families. It is crucial to understand and address these barriers to develop effective strategies that can improve access to ASD services for the Latino community. This can be achieved by creating culturally sensitive and linguistically appropriate interventions that cater to the unique needs of Latino families. Bridging this gap is of utmost importance to ensure that all children, regardless of their ethnic background, have equal access to early intervention services and the necessary support for optimal development and quality of life.
References
Blanche, E. I., Diaz, J., Barretto, T., & Cermak, S. A. (2015). Caregiving experiences of Latino families with children with autism spectrum disorder. The American Journal of Occupational Therapy, 69(5 ), 6905185010p1–6905185010p11. https://doi.org/10.5014/ajot.2015.017848
Burke, M. M, Rios, K., Garcia, M., & Magaña, S. (2020). Examining differences in empowerment, special education knowledge, and family-school partnerships among Latino and white families of children with autism spectrum disorder. International Journal of Developmental Disabilities, 66(1), 75–81. https://doi.org/10.1080/20473869.2018.1487502
Centers for Disease Control and Prevention. (2023). Autism spectrum disorder. https://www.cdc.gov/ncbddd/autism/index.html
US Census Bureau. (2023, September 28). Hispanic Heritage Month: 2023. Census.gov. https://www.census.gov/newsroom/facts-for-features/2023/hispanic- heritage-month.html
Magaña, S., Lopez, K., Aguinaga, A., & Morton, H. (2013). Access to diagnosis and treatment services among Latino children with autism spectrum disorders. Intellectual and Developmental Disabilities, 51(3), 141–153. https://doi.org/10.1352/1934-9556- 51.3.141
St. Amant, H. G., Schrager, S. M., Peña-Ricardo, C., Williams, M. E., & Vanderbilt, D. L. (2018). Language barriers impact access to services for children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 48(2), 333–340. https://doi.org/10.1007/s10803-017-3330-y
Zuckerman, K. E., Lindly, O. J., Reyes, N., Chavez, A. E., Macias, K., Smith, K. A., & Reynolds, A. (2017). Disparities in diagnosis and treatment of autism in Latino and Non-Latino White families. Pediatrics, 139(5). https://doi.org/10.1542/peds.2016-3010
Zuckerman, K. E., Sinche, B., Mejia, A., Cobian, M., Becker, T., & Nicolaidis, C. (2014). Latino parents’ perspectives on barriers to autism diagnosis. Academic Pediatrics, 14(3), 301–308. https://doi.org/10.1016/j.acap.2013.12.004
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