What is the problem?
A gap exists. Simply put, there is a disparity in the quality and timing of services provided to children with Autism Spectrum Disorder (ASD) who come from culturally and linguistically diverse (CLD) backgrounds. The National Institute of Medicine defines disparities in health service as differences in treatment or access to care that cannot be attributed to the difference in health status between groups (Alegria et. al., 2010). Data from the CDC’s 2019 report on ASD shows that a larger proportion of white children are identified with ASD than black or Hispanic children. This difference means that black and Hispanic children may not be getting the services they need to reach their full potential (www.cdc.gov, 2019).
Diagnosis. In a 2017 study, Latino families (both proficient and not proficient in English) reported more barriers to diagnosis than white families. While all families in the study reported stress of the diagnostic process and limits in understanding the medical system as barriers, all Latino families reported additional barriers. ‘Parent knowledge of ASD’ and ‘parent trust in providers’ were additional barriers for these families (Zuckerman et. al., 2017). Hispanic children are 65% less likely than white children to be diagnosed with ASD. Their black peers are 19% less likely than white children to be diagnosed with ASD (Furfaro, 2017). Additionally, African-American children with ASD are 5.1 times more likely to be misdiagnosed with behavior disorders before they are correctly diagnosed with ASD (Mendell et. al., 2007). This delay in diagnosis can keep children from crucial early intervention services.
Treatment. In the Zuckerman 2017 study, Latino children who did receive a diagnosis were far more likely than their white peers to receive less than one hour or no therapy services per week. These children had significantly more unmet needs than their white peers. When a child from a minority background is diagnosed, their IEP may contain less ASD-specific goals, such as social goals, and less hours of services than their white peers with the same diagnosis (St. Amant et. al., 2018). Due to their later age of diagnosis, minority children may require longer and more intensive intervention (Gourdine, Baffour, & Teasley, 2011) However, treatment is falling short of these increased needs for many children.
Why does this gap exist despite increasing advances in awareness of ASD symptoms? Stigma, lack of access to healthcare services due to non-citizenship or low-income status, non-English primary language, lack of trust in healthcare providers, and level of acculturation in the family may all contribute to the gap. (Zuckerman et. al., 2017, (www.cdc.gov, 2019). Acculturation level refers to how a minority family has adopted the traits of their surrounding culture. The more a minority family “acculturates”, the less barriers to health service access they may face. Overall, doctors are more hesitant to diagnose children in non-white families (Shevell et al., 2001). In a report from NPR, mother Sherry Alvarez discusses how doctors dismissed her when she brought her son in for help. He was eventually diagnosed with ASD. Alvarez believes earlier diagnosis and intervention would have resulted in a difference in her son’s life now as a teenager (Renz, 2018). Many CLD families in the United States share a similar story.
Why does it matter?
Early intervention leads to better outcomes. Research shows that intervention provided before age 3 ½ has a greater impact than intervention after age 5 (Wetherby et. al., 2004). By the time a child enters kindergarten they have missed important early intervention opportunities available to children who have a diagnosis. CLD children who have ASD may fall behind in school due to an opportunity gap caused by lack of early intervention services and supports. Further, there is an overrepresentation of minority children in elementary school special education classes. This is not because children from minority backgrounds are more likely to have a disability. While minority children with disorders such as ASD are underrepresented in early intervention services (Morgan, Farkas & Hilemeier, 2012), they are later overrepresented in school special education programs. This suggests that lack of early intervention services causes a later need for more services. Minority children may require longer and more intensive intervention later due to inequalities in early identification and services (Gourdine, Baffour, & Teasley, 2011). Due to disparities in the healthcare system, minority children with developmental disabilities such as ASD are falling behind their white peers, furthering the opportunity gap.
Evidence of an opportunity gap. On the surface, these differences in performances may look like a gap in achievement; white students with ASD are performing better in school than their non-white peers. However, this is clearly a gap in opportunity, a gap caused by inequitable resources and opportunities beginning in earlier childhood. When families do not have access to the best early intervention services, their children will not progress toward goals as quickly as the children who did have access to these services, causing them to fall further behind as they go through school. CLD families face many barriers that lead to a gap in opportunities, such as socioeconomic barriers, language barriers, and health insurance barriers. Rather than address an achievement gap, we must address the opportunity gap by providing equitable services to families from minority backgrounds with these barriers in mind.
What can we do?
Healthcare and education service providers widely agree that all children with disabilities deserve quality intervention and diagnostic services, despite their family background. However, most healthcare providers do not take active steps to ensure this happens. We can attack this important issue from two directions. (1) Healthcare and education professionals must advocate for change on a systemic level and (2) We must consider the opportunity gap to change the individual services we are providing for students in our own community.
Systemic change & advocacy. These disparities exist because of longstanding inequality in healthcare and education.
As clinicians, it is our duty to advocate for change in policy and social norms. We can push for legislation in support of providing equitable healthcare and education for families from marginalized backgrounds, rather than legislation that continues to widen the opportunity gap by giving an advantage to those in the majority.
We can push for legislation that provides extra support for minority families that gives all children the same opportunities regardless of factors such as race, socioeconomic status, and language. As members of the healthcare and education fields, we should also advocate for these families in the community by providing information that meets their needs- including information presented in their most comfortable language and representation of people from CLD backgrounds in that information. Autism awareness has increased exponentially in the United States in the last few decades, yet there has been a lag in awareness efforts targeted toward families from CLD backgrounds. Data from the CDC shows that this information is gradually catching up, and there have been positive results from increased efforts to reach minority families. We must keep this up in order to close the opportunity gap. While systemic change takes time, there are things we can do now to help the students we see.
Address the opportunity gap rather than the achievement gap. We can address the opportunity gap by practicing equity instead of equality. The first step is to recognize that not all families have the same resources, and minority families face many barriers that majority families do not face. When seeing a student, no matter what age, we must be mindful of the barriers a family has faced and consider these barriers when diagnosing and treating. This may mean we take extra steps and provide extra supports to help our students from CLD backgrounds. If we provided the exact same support, or equal support, to all families, the opportunity gap will continue to widen. Instead, we should provide equitable services that address barriers to close the opportunity gap, which will in turn close the achievement gap we see in the school-age years.
Tips for Equitable identification and diagnosing:
- Provide information about ASD and red flags for developmental delays in communities where minority families live. Make the information accessible. Provide information in writing, images and videos in various languages. Reach out via community organizations such as libraries, community centers and clinics, schools, churches, etc..
- Reach out to medical professionals who serve these communities. Provide training to pediatricians in community clinics regarding early signs of ASD and ways they can educate parents. Make sure they are armed with accurate information in various languages and know where to refer families to.
- When a family comes for an evaluation, take the time to really get to know them. Ask about their current understanding of ASD and current knowledge of how to navigate early intervention so that you can find gaps in their understanding and fill them in. Because non-white families may not have received the same information and guidance as white families, you must be their guide. Inform them of next steps and provide them with other points of contact if necessary. While this may seem like extra work, it is a necessary step toward equitable service delivery.
- Know that a family seeking help for their child may have been previously dismissed by the healthcare system. Be the service provider who truly listens and looks at their child, even if the pediatrician has already reported typical development.
Tips for equitable treatment:
- Know that the home environment may be different for children from CLD households due to the additional barriers their families may face. Due to socioeconomic and education barriers from the systemic opportunity gap, our students’ parents may not be able to invest the same resources into their child’s development and learning at home. Give the child extra support in your classroom or therapy room that makes up for these barriers.
- Provide extra parent coaching and resources to train parents on how to promote communication and social skills at home. However, be careful not to make the parent feel shameful or inadequate. You are there to support them, not criticize them.
- Fight for fair IEP goals that will help children reach their full potential. CLD parents may not know how to navigate the IEP system and may not know that they can ask for better services. We can help parents understand their rights and advocate for our students to get the services they need.
- When working with school-age students from non-white families, know that the children may not have received the same opportunities as their white peers. Be ready to invest extra time and resources into these children to help them catch up. Remember that this is due to a gap in opportunity.
In conclusion, the families we work with should always feel like we are on the same team as them- the team that is rooting for the most growth and success for their child. Working with families and believing in a child’s ability to make progress, regardless of barriers, is one of the most rewarding parts of our job!
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Furfaro, H. (2017, November 20). Race, class contribute to disparities in autism diagnoses. Retrieved from https://www.spectrumnews.org/news/race-class-contribute-disparities-autism-diagnoses/
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About the author
Katie Weidner is a graduate student in the department of Hearing and Speech Sciences at the University of Maryland. She is a member of the Cultural-Linguistic Diversity Emphasis Program (CLD-EP) and Bilingual Certificate Program as a second-language learner of Spanish. Her clinical interests include assessment and evaluation of children with developmental disabilities, emerging language in preschool students, and AAC.