Understanding the Barriers to Receiving Autism Diagnoses for Hispanic and Latinx Families

Abstract

Significant disparities exist in early identification of autism spectrum disorder (ASD) for Hispanic and Latinx children. ASD prevalence estimates are approximately identical for White and Black children but lower for Hispanic and Latinx children. Reasons for these racial and ethnic variations are likely multifactorial. This review sought to understand previously described barriers and limitations to accessing ASD diagnostic services in the Latinx and Hispanic communities. Three main categories of existing barriers were identified: (1) parent/family, (2) community, and (3) systemic. These barriers are complex and multifactorial in nature, including circumstantial limitations such as limited English proficiency, noncitizenship, and low-income status. These can limit health care access, and can lead to family and community cultural barriers, poor knowledge about ASD, and social stigma related to disabilities. Understanding and mitigating barriers is essential to reduce disparities to ASD diagnosis in the Hispanic and Latinx community.

Autism spectrum disorder (ASD) is a complex developmental disorder that can cause significant social, communication, and behavioral challenges; it is increasing in prevalence, currently estimated at 1 in 54 children in the United States.^1,2 Prompt ASD diagnosis and treatment significantly improves long-term developmental, academic, and family outcomes.^2,3 However, the diagnostic process continues to face significant limitations. Racial and ethnic disparities exist in early identification and treatment of ASD.⁴ Hispanic and Latinx communities represent the largest racial and ethnic minority group in the US, constituting 18.1% of the nation’s total population,⁵ and ASD diagnostic disparities are highest in this group.^3,4,6

The Latinx and Hispanic community faces multiple challenges to receiving an ASD diagnosis due to reduced identification of children with ASD and delayed diagnosis.^4,6,7 Hispanic and Latinx children are more likely to have severe symptoms and comorbidities,⁷ which may either represent missed opportunities to intervene or missed identification of higher-functioning children with ASD. Low ASD prevalence has also been reported in Hispanic and Latinx populations outside of the US (eg, Venezuela).⁸ There is also evidence that Latinx and Hispanic children are less likely to receive therapies and access to ASD interventions,^9,10 although a recent analysis of a Medicaid sample demonstrated that overall Hispanic and Latinx children are more likely to receive outpatient services and just as likely to receive school-based services as compared with White children.¹¹

Although racial and ethnic disparities in ASD diagnoses have decreased in the past years,^1,12 the prevalence of ASD in Hispanic and Latinx children remains lower than in White children.¹ Reasons for these ethnic variations are likely influenced by multiple counteractive factors associated with Hispanic ethnicity, although protective factors associated with this ethnicity have not been ruled out. Most studies suggest that intrinsic cultural factors within the Hispanic and Latinx culture and their community play an important role in these disparities.^9,13,14

The goal of this article is to identify, describe, and summarize the barriers and limitations that interfere with Hispanic and Latinx parents receiving a prompt ASD diagnosis.

METHODS

PubMed and PsycINFO databases were searched using title words and keywords. Search terms included the following: “autism spectrum disorder,” “developmental disabilities,” “barriers,” “limitations,” “disparities,” “Hispanics,” “Hispanic culture,” “Latinx,” and “diagnosis.” Publications were individually reviewed for suitability of inclusion per the study goals. Original, peer-reviewed studies written in English were included. Snowball sampling continued with review of references of selected publications to identify other appropriate articles.

The terms “Hispanics” and “Latinx” refer to broad ethnic groups that encompass different countries of origin and different racial groups. Although some articles included in this review used the term “Hispanic,” the majority used “Latino” or “Latinx” We have decided to use the term “Latinx” throughout this review for simplicity, but it is intended to encompass both Hispanic and Latinx participants and to capture the terminology preferred by most authors whose work we have summarized.

REVIEW OF LITERATURE/DISCUSSION

A total of 30 articles with information about diagnostic disparities between Latinx children and various racial and ethnic groups of children with ASD in the US are included in the review. Themes describing barriers to ASD diagnosis in the Latinx community were organized into three main categories: (1) parent/family, (2) community, and (3) systemic. In each of these categories, subthemes were identified.

Parent and Family Factors

Latinx parents have distinct beliefs about child development. Latinx parents also face other challenges that are circumstantial to residency in the US such as limited English proficiency (LEP) and low English literacy levels.^9,15–20

Subtheme 1: Cultural differences in the perception of child development and developmental disabilities.

Parental perceptions of normal child development may vary significantly depending on one’s cultural background. Most of the cultural differences in developmental perception occur in the domains of personal and social development, and the fewest differences occur in the areas of gross-motor domains. That is, people of distinct cultures such as Latinx, African American or Black, White, and Indian-Caribbean cultures generally agree on the age when a child should walk but have different expectations with social-communication milestones.¹⁶ In general, Latinx parents have less knowledge about the typical age for attaining social-communication milestones, or they tend to believe that these are reached at a later age.^15–17 The knowledge and personal experience that parents have with developmental disabilities (DDs) vary according to race and ethnicity and language, even after adjusting for parent education.^15,17 In comparison to White parents, Latinx parents with LEP are less familiar with early signs of DDs, report less knowledge about developmental milestones, and describe less personal experience with people with DDs.¹⁵

Subtheme 2: Limited English proficiency.

Many Latinx families face communication barriers that compromise their interaction with health care providers.^9,13–15,18 LEP is frequently mentioned as a significant barrier in Latinx families who are primarily Spanish-speaking. Even parents who are English proficient believe that LEP is a barrier for parents who speak English less well.¹³ Although all families experience significant barriers to ASD care, Latinx families with LEP experience some barriers disproportionately, have the highest levels of unmet therapy needs, and the lowest weekly therapy hours.⁹ Overall, studies have shown that Latinx parents with LEP are less familiar with early signs of common DDs as compared to White parents.¹⁵

Subtheme 3: Immigration status.

Children whose parents are not born in the US are less likely to be diagnosed with ASD as compared to children with parents born in the US, and this difference persists after controlling for socioeconomic status.²¹ Maternal birth in Mexico has been associated with a lower prevalence of ASD in a sample of children born in California.²² The lower ASD prevalence in first-generation US born Latinx children might be explained by differences in parental awareness and access to care due to lower levels of acculturation, but it may also be related to fear of government discovery, because parents who are not legal residents may be reluctant to use services provided by governmental agencies.¹⁸ Immigration policies and laws that increase fear of detection, as well as lack of knowledge about the health care system, have been shown to affect health outcomes by limiting immigrants who are undocumented the ability to effectively access health services.²³

Subtheme 4: Low levels of parental education.

Latinx immigrants have lower rates of educational achievement relative to other women in the US. Most women who have immigrated from Latin American countries have not graduated from high school.²⁴ Also, Latinx parents have lower average health literacy.²⁵ Higher maternal education among mothers of children with ASD may be associated with greater understanding of child development, service systems, and advocacy strategies, which leads to earlier intervention.⁶ Low levels of parental education seem not to only affect age of autism diagnosis in Latinx children, but it is also positively correlated with access to ASD interventions. Lack of maternal education has been proven to be an important factor that negatively influences the number of special education services Latinx children with ASD receive.^10,19 Moreover, higher stigma scores surrounding autism in Latinx children are closely correlated with lower levels of parental education.²⁰

Subtheme 5: Religion.

Some Latinx parents may have religious beliefs about their children with disabilities, including a belief that the child is a test from God.²⁶ The endorsement of a spiritual attribution, according to Colbert et al.,²⁷ for child diagnosis is related to lower levels of ASD knowledge. Religion may also play a role in delaying access to care; conflicts between patients and providers can arise when patients use religious terms to explain their disagreement with medical recommendations.²⁸

Community Factors

Subtheme 1: Lack of knowledge about ASD.

Low knowledge about ASD in the Latinx community has been cited as a major barrier to obtaining a diagnosis.^9,10,13,18 Many Latinx parents report that they knew nothing about ASD before their child’s diagnosis. This is one of the most common barriers cited by both Latinx parents with LEP and and Latinx parents with English proficiency (85.1% and 72.3%, respectively).⁹ This barrier has been mentioned also by providers; most primary care providers (PCPs) report that parents of Latinx children have lower levels of ASD knowledge compared to parents of White children.¹⁸

Subtheme 2: Social stigma around ASD and mental health.

Disabilities and mental health problems have a negative connotation in the Latinx community.²⁹ These are often perceived as something shameful or embarrassing for the family that prevents them from seeking care.^13,26,30 Social stigmas precipitated by family and friends often prevent families from discussing developmental concerns with their community, family members, and health care providers.¹³ This can lead to parents feeling judged by their community and extended family members, who may consider the child’s tantrums and outbursts due to ASD as a consequence of the child being “badly educated.”²⁶ Although parents might find early ASD signs concerning, their initial reaction may be to attribute the child’s behavior to poor relationships among family members, and as a problem to be solved by improving family interactions or suggesting “more attention” or “more love” from the parents.³⁰ Caregivers also report that family and community members do not necessarily believe that their child has a disability, and often dismiss or doubt caregivers’ concerns, which leads to reluctance to share the diagnosis.³¹ Spanish-speaking caregivers report a community tendency to attribute behavioral symptoms of ASD to a “need for discipline” and “boys being boys,” rather than a developmental concern, and they are often blamed for poor parenting.³¹

Subtheme 3: Gender roles in Latinx communities and the effect on perception of disabilities.

Machismo, which is the traditional male role in the Latinx community, is associated with social normative behaviors and attitudes that are aggressive, sexist, chauvinistic, and hypermasculine.³² The role of Machismo is described by mothers as a substantial problem impeding pursuing an ASD diagnosis because the mothers believe that fathers perceive having a child with a disability as a poor reflection on them as men.¹³ Some fathers may discredit a mother’s concerns, be uncooperative with the diagnostic process, or take a passive role in their children’s care.¹³

Structural Factors in the Service Systems

Structural factors in service systems, both the overall health system and health care providers, contribute to disparities in service access and the quality of health care.

Subtheme 1: Lack of resources, capacity, or mandate to equitably disseminate information to underrepresented groups.

Although Latinx children receive special education services similar to that of White children,^10,11 they do not receive early intervention or ASD intensive services for which they are eligible at the same rates.¹⁰ Both providers and caregivers indicate that parents have insufficient awareness of available resources and services because information is not disseminated systematically.³¹

Subtheme 2: Negative interactions with health care providers that have limited cultural awareness may perpetuate mistrust in the system.

Lack of cultural competence for the Latinx culture in primary care settings may lead to major consequences; providers prematurely diagnose racial and ethnic minority children on the basis of general prejudices held by clinicians, client stereotypes, and statistical discrimination.⁶ Latinx parents feel that providers show dismissive behaviors toward their concerns, which contributes to delayed access to diagnostic services.¹³ Trust in providers is often more problematic for Latinx parents with LEP compared to people with English proficiency and White families.⁹ In California, most pediatricians report experiencing difficulty recognizing signs and symptoms of ASD in families with Spanish as primary language.¹⁸ PCPs perceive a lack of knowledge about ASD in the Latinx community.¹⁸ Parents of children with autism are more likely to report that their doctor did not spend enough time with their child or that their doctor did not listen.³³ Latinx families also report that their providers are not sensitive to the family’s values and customs.¹⁰ Provider minimization of parental concerns was also reported by families, whose PCPs attributed symptoms to “boys being boys” or recommended a “wait and see” approach.³¹ Furthermore, language or cultural differences may influence whether providers ask parents about their developmental concerns. Spanish-speaking parents with LEP are less likely to report provider elicitation of developmental and behavioral concerns.¹⁷ Lack of bilingual providers was also reported as a factor that slowed down both the diagnostic process and the access to services.^18,31 Interestingly, providers have also described experiencing difficulty engaging with Latinx caregivers, such that they had to repeat explanations about the importance of services over multiple visits to engage families in services at all.³¹

Subtheme 3: Limited availability of screenings and information in languages other than English.

Spanish-language developmental screening rates for both ASD and general developmental delays have been found to be lower than English-language developmental screening rates: 10.3% versus 15.2%.¹⁸ Overall, parents tend to not receive information about ASD in Spanish.^18,31

Subtheme 4: Complexity of the diagnostic process.

Diagnostic process complexity can be a challenge for Latinx families to navigate, particularly if less acculturated.^13,31 Notably, this barrier is commonly found in all communities, regardless of race and ethnicity.^9,14,30

Subtheme 5: Insurance and/or poverty limits access to care.

Restrictive insurances often make appointments harder to schedule. Some parents may “push aside” their developmental concerns because of more pressing economic needs.¹³

Subtheme 6: Logistical barriers.

Latinx children living in small metro or non-metro counties have significantly lower rates of school-based service use.¹¹ Transportation and distance limit access to skilled providers and quality services. In both urban and rural areas, long waitlists were a commonly reported barrier to timely diagnosis and to provide intervention access across groups of parents and providers.³¹

CONCLUSION

There are variable factors that delay access to autism diagnostic services in Latinx communities. The barriers and limitations experienced by these families are complex and multifactorial in nature, including not only barriers that are circumstantial for these communities such as LEP or immigration status, but also family and community cultural barriers that significantly interfere with access to ASD diagnostic services. These factors appear to operate at multiple levels to affect diagnostic disparities, both directly (eg, creating barriers to diagnosis and care) and indirectly via their influence on ASD awareness.

All children with ASD deserve access to timely, accurate diagnosis and prompt initiation of effective treatment, and so efforts should be made to mitigate this disparity.³⁴ Identifying DDs in Latinx families will likely improve by having readily available Spanish-language screening tools. Spanish-language ASD and developmental screening rates are low and should be improved. Although the Modified Checklist for Autism in Toddlers is free and available in Spanish, other developmental screening tools are not, and purchasing screening tools in multiple languages may be a challenge for smaller pediatric practices who primarily serve publicly insured populations.

Parental education is also an essential step to help families understand the importance of early screening and following up with referral appointments. Likewise, pediatricians could also benefit from education; learning about bilingualism and language development, how to accurately interpret screening results in Latinx communities who are less acculturated, and how to communicate diagnostic information to families to help them navigate the cultural barriers to services and acceptance of diagnoses, which are key factors to building better patient-provider relationships. A multiprong approach to mitigating disparities, which addresses parent/family, community, and systemic service factors, is essential to improve the care of Latinx children with ASD.