Institutional Racial Disparities in Treatment of Autism Spectrum Disorder
In solidarity with the Black Lives Matter movement and in an effort to keep our community educated on the ways racism pervades nearly all aspects of American life, this research review is dedicated to exploring racial disparities in the treatment of Autism Spectrum Disorder (ASD).
Access to proper and adequate medical care is a struggle for many Americans, but this struggle is particularly heightened for those who identify as Black or African American. This is largely due to centuries of inequality and systemic discrimination that has persisted, both blatantly and discreetly, in a number of modern-day public institutions. Racism and microaggressions from clinicians, limited access to treatment facilities, and insurance/Medicaid discrimination are just a few of the factors that hinder Black families from obtaining sufficient medical treatment. It is no surprise, then, that these issues pose a significant threat to families of children with Autism Spectrum Disorder (ASD). In the United States, the prevalence rate of ASD is roughly the same between Black and White children. Likewise, parents of children from both racial groups typically raise concerns with health professionals over their child’s development at nearly the same stage of childhood. Despite these consistencies, there is general consensus in medical literature that Black children, on average, tend to be diagnosed at a later age than White children of the same socioeconomic status. Given the importance of early intervention in the treatment of ASD, this disparity cannot go unaddressed.
In their 2018 study, Dababnah et al. explored the aforementioned issue in a participant group of 25 African American children from Baltimore, Maryland. The research team’s primary goal was not to prove that this delay in treatment exists –– there is already clear evidence pointing towards this conclusion –– but rather to examine the potential causes behind this delay. A group of 22 female-identifying caregivers were interviewed, 3 of whom were raising more than one child with ASD. In the interviews, the research team asked the caregivers a series of questions relating to initial diagnoses, intervention services, and provider-patient interactions. In doing so, they employed the Public Health Critical Race Framework (PHCRF), a system used in previous studies that helps to evaluate patient experiences and inequitable care outcomes with structural racism as the pre-disposing factor. The first measure of inequity the researchers examined was the punctuality of attention from primary providers. Though some participants noted their healthcare providers delivered prompt attention to their developmental concerns, a number of caregivers in the group reported experiences with doctors and other medical professionals who did not take their concerns seriously or exhibited a reluctance in providing them with ASD screening referrals. In this group, many of the caregivers had to seek out screening services on their own or make repetitive requests to their primary care clinicians for a referral to a specialist. In some cases, it took years after initial concerns were raised for their children to receive an ASD diagnosis.
Another area of concern, perhaps more explicit in nature, was perceived racism in clinician-caregiver interactions. Several caregivers reported instances in which clinicians made assumptions about their knowledge of ASD, family income levels, and even insurance status. In a specific example, a caregiver remarked on the negative racial tones present when her child’s provider was “surprised” when she came to the appointment educated on ASD signs and symptoms. This caregiver reported that she had many black friends who had similar experiences with physicians making discriminatory assumptions on their level of medical knowledge. In another case, a mother recounted a medical professional who assumed she was on Medicaid and had gone on a tangent about the difficulties of screening with Medicaid –– this caregiver had her own private insurance.
Darren Ornitz, Reuters
These experiences are all too common throughout the United States, and the consequence is a prolonged or even less effective course of treatment for ASD. These years of early childhood development are crucial in the implementation of treatment and therapies, so the delay often causes Black children to undergo treatment for longer periods of time and deal with increased severity of ASD symptoms down the road. This extension of intervention poses an unnecessary financial and psychological strain on Black families, putting them at an even further disadvantage when compared to White families of similar socioeconomic status. It is no question that these issues are inexcusable and should make us all a bit more critical of our healthcare system as it stands currently. Where can Black Americans find reliable ASD resources relevant to them specifically? How can they ensure their healthcare providers do not have ulterior biases and stigmas against them? These are questions that should not even have to be addressed but are unfortunately a reality for so many people today.
The above study highlights only a miniscule glimpse into the way racism pervades the treatment of ASD, so I have compiled a short list of resources as well as some first-hand accounts from Black parents that may be of interest to our readers:
How Racism Impacts Black Kids With Autism: From the Clinic to the Classroom
What Are the Barriers to Autism Diagnosis and Treatment for African American Children?
- https://www.aucd.org/docs/Haworth_caai%202014%20Barriers%20poster-Shannon%20Haworth.pdf
Racism and Violence: How to Help Kids Handle the News
- https://childmind.org/article/racism-and-violence-how-to-help-kids-handle-the-news/
Race, Class Contribute to Disparities in Autism Diagnoses
- https://www.spectrumnews.org/news/race-class-contribute-disparities-autism-diagnoses/
References
Dababnah S, Shaia WE, Campion K, Nichols HM. "We Had to Keep Pushing": Caregivers' Perspectives on Autism Screening and Referral Practices of Black Children in Primary Care. Intellect Dev Disabil. 2018;56(5):321‐336. doi:10.1352/1934-9556-56.5.321
Gourdine RM, Baffour TD, Teasley M. Autism and the African American community. Soc Work Public Health. 2011;26(4):454‐470. doi:10.1080/19371918.2011.579499