My nephew was diagnosed with Autism Spectrum Disorder (ASD) when he was four. Once I began my graduate program, I began to have access to information regarding neurodevelopmental disorders and disabilities. Throughout my courses, I learned that the diagnostic rates for Latino children are lower and that Latino children are more likely to receive a late diagnosis when compared to white children (Coffield et al., 2021).
I am currently in a graduate public health program with a concentration in Maternal and Child Health. A significant focus in my academic career has been immigrant health and health literacy in the Latino community. As I first began trying to educate myself more on this topic, I realized that disabilities are not openly discussed in the Latino community I grew up in. Before I entered my graduate program at 23, I didn't know the definition of ASD. After learning about ASD, I decided to immerse myself in literature, and this is what I found.
Hispanic/Latino Americans are the second largest ethnic group in the United States. In 2020, the Hispanic/Latino population reached 62.1 million, accounting for 19% of the country's population (Funk & Lopez, 2022). This number will only continue to rise as the years go by.
Research suggests that this neurodevelopmental disorder can be equally found across all ethnic groups, but there are consistent inequities in the diagnosis and treatment of non-White groups (Rivera-Figueroa, 2022). It is also important to note that both non-white and white parents experience similar barriers when accessing services for their children with ASD. However, the reasons vastly differ between groups (Rivera-Figueroa, 2022). Sociocultural factors influence how and when immigrant families seek diagnosis, but what does this mean?
Physicians and care providers must become familiar with the perceptions surrounding ASD among immigrant Latino parents and caregivers. Both qualitative and quantitative research suggests that many Latino parents attribute ASD symptoms to bad parenting or poor family dynamics. Unfortunately, research also suggests that Latino communities still perceive disabilities as a shameful experience that must not be spoken about (Rivera-Figueroa, 2022). Another significant barrier in the Latino community is gender roles. As we can see, culture plays a large part in perceptions. A study by Zuckerman (2014) revealed that mothers felt like the fathers saw having an autistic child as weak and as a poor reflection of them as a man. This often leads to the mother being the primary caregiver of the child which consequently leads to fathers being uncooperative in the diagnostic process and passive with care (Zuckerman et al., 2014).
Systemic factors play a significant role in diagnosis and treatment. Physicians and care providers must be aware of the lack of representation in ASD research that Latino children and their families encounter (Rivera-Figueroa, 2022). This highly limits the understanding of the specific needs of this community. Awareness of the language barriers many Latino families face is also essential. In their article, Rivera-Figueroa et al. (2022) explain that parents of children with ASD who were only Spanish-speaking received low-quality information and education about ASD symptoms, treatment plans, and resources. Ethnographic studies have shown that families have hesitated to advocate for their children due to fear of retaliation and being shamed or stigmatized. It was also found that those parents who did decide to advocate were ultimately questioned, underestimated, and ultimately denied access to services by school professionals (Rivera-Figueroa, 2022).
Overall, these factors contribute to the delay in evaluation and diagnosis. Consequently, this means Latino children with ASD receive early intervention at lower rates when compared to their white peers. In addition, a diagnosis of Autism can be a scary and challenging time for many families. Therefore, it is vital that families and their children feel supported and safe when walking into any clinical space.
Lastly, physicians should play into this communities' most significant protective factor, familialismo. This is a term that describes the family-centered values across the Latino community. Many live in multigenerational homes and have extended family members who make up a tightly-knit support system. As a result, family-centered values have been linked to a better quality of life (Rivera-Figueroa, 2022).
My goal with this piece was to raise awareness on this subject. I hope each of you who took the time to read this learned something new.
References:
Coffield, C., Deborah, S., Harris, J., & Jimenez, M. (2021, December). Exploring the Experiences of Families of Latino Children Newly Diagnosed With Autism Spectrum Disorder. Journal of Developmental & Behavioral Pediatrics. Retrieved January 27, 2023, from https://doi.org/10.1097/DBP.0000000000000965
Funk, C., & Lopez, M. H. (2022, June 16). 1. A brief statistical portrait of U.S. hispanics. Pew Research Center Science & Society. Retrieved November 11, 2022, from https://www.pewresearch.org/science/2022/06/14/a-brief-statistical-portrait-of-u-s-hispanics/
Rivera-Figueroa, K., Marfo, N. Y., & Eigsti, I.-M. (2022). Parental perceptions of autism spectrum disorder in Latinx and black sociocultural contexts: A systematic review. American Journal on Intellectual and Developmental Disabilities, 127(1), 42–63. https://doi.org/10.1352/1944-7558-127.1.42
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
