The Link between Structural Racism and ASD in Pediatrics
Numerous studies have investigated how racial disparities in medicine affect youth with ASD (autism spectrum disorder). For children with ASD, significant racial inequalities exist in their access to treatment services. It can be hypothesized that structural racism, prejudice, education, and income are some of the many factors at play in this inequity.
Multiracial children are diagnosed with ASD significantly later than their white counterparts, and they often face difficulty accessing treatment even after the diagnosis. In a recent study published in June 2020 by Constantino et al, it was found that, among a large cohort of African American children, there was, on average, a three year delay between ASD diagnosis and the first developmental concern voiced by the child’s parent(s). Nearly half of the parents in the study reported that they actually had to visit multiple providers before receiving an ASD diagnosis for their child, despite voicing their concerns on various occasions. It can reasonably be inferred that this delay is an effect of structural racism, which leads to such inequity for African American children with ASD. Although the possible causes of such a delay in ASD diagnosis are quite complex, it can result from a number of relevant issues, such as racial discrimination, a lack of diversity among health professionals, and/or the lack of specialists in geographic areas with larger minority populations.
A recent workforce survey showed that only 2% of developmental-behavioral and neuro-developmental pediatricians are African American. This is problematic because a health provider's race has been found to have a huge impact on patient-provider relationships, especially for minority groups. In fact, multiple studies have found that minority patients benefit from having minority doctors. This is because, under the care of non-minority physicians, black Americans are two to three times as likely to die of preventable heart disease and stroke than their white counterparts. In addition, black Americans have higher rates of cancer, asthma, influenza, pneumonia, diabetes, and HIV/AIDS, which begs the question of whether this is in reality due to genetics or instead an unfortunate result of structural racism and unequal treatment. Unfortunately, this inequality is present in the treatment of ASD, as well. At least part of the reason for the three year delay between ASD diagnosis and the first parental developmental concern can be attributed to the fact that many non-minority health professionals do not take minority concerns about health seriously, which could be either implicitly biased or blatantly discriminatory.
In addition to this possibly implicit bias, part of the inequality in ASD care arises from the fact that there is a lack of health specialists in areas where there are larger populations of minority residents. In the study mentioned above, it was reported that 31.3% of parents cited availability of professionals as being a barrier to the diagnosis and treatment of their child. As a result of racism in housing policy, many African American families may be suffering from lack of available workforce where they live. This is because workforce capacity is a major challenge in the field of ASD, and many African American families live in areas with few ASD diagnostic specialists and also happen to be more likely to rely on Medicaid. Medicaid may raise further inequality because low rates of Medicaid reimbursement for diagnostic services can discourage a workforce in these areas, limiting the number of practicing physicians in these communities.
Ultimately, these data, combined with previous work on inequity in ASD, call for the immediate evaluation of how structural racism in the U.S. has impacted the lives of children with ASD. An action plan to address these inequalities must be proposed, with current suggestions including the re-evaluation of Medicaid reimbursement rates for ASD diagnosis to increase workforce capacity in underserved areas and the appointment of health professionals who reflect the diverse communities they serve. The authors also take care to address that any study of racial inequity (especially this one, which centers around the African American population, genetics, and IQ) calls for a discussion of racism and racial injustice in the U.S., which concentrates an unfair advantage to white communities and a disadvantage to black communities. They remind the readers that the black-American community has endured centuries of “scientific” claims used to suggest some genetic predisposition to lower intelligence and health. Contemporary researchers are reminded to explore genetics, race, and IQ with extreme caution because the conclusions that they report can have huge ramifications for families seeking ASD care.
Constantino JN, Abbacchi AM, Saulnier C, et al. Timing of the diagnosis of autism in African American children. Pediatrics. 2020; 146(3):20193629.
Broder-Fingert, S., Mateo, C.M., & Zuckerman, K.E. Structural Racism and Autism. Pediatrics. 2020; 146(3):e2020015420.