This past Friday Guest Writers Ava Slocum and Obutor Ogonor attended the first lecture of the year in Columbia Medical Center’s Implementation Science Seminar on Health Equity. 

Friday’s lecture, “Using Implementation Science to Address Issues of Structural Racism for Youth with Autism,” was held over Zoom and was presented by Dr. Sarabeth Broder-Fingert, Associate Professor of Pediatrics at UMass Chan School of Medicine and Vice-Chair of Clinical Research in the Department of Pediatrics. Dr. Broder-Fingert began her talk by highlighting the limitations of past data on autistic youth due to the structural inequity that was the focus of the presentation, stating that “we need to reappraise past work to move forward in an equitable way.”

In one of the presentation’s first slides, Dr. Broder-Fingert defined structural racism as “inequalities rooted in the system-wide operation of a society that excludes substantial numbers of members of particular groups from significant participation in major social institutions.” In the past, she said, the word “disparities” has been used to refer to the wide gap between timely diagnosis and treatment of autistic youth of different races. However, referring to the results of calculated, system-wide racism as mere “disparities” euphemizes the problem and devalues the experiences of those who have been adversely affected.

Dr. Broder-Fingert then provided a short overview of Autism Spectrum Disorder (ASD). Although there wasn’t enough time in the presentation for an in-depth explanation, she briefly defined ASD as a developmental disability causing social, behavioral, and communication challenges. It is important for autism to be diagnosed early in order for treatment to start comparatively early in life. However, getting an autism diagnosis is a lengthy process with numerous steps; Dr. Broder-Fingert’s slideshow included a process map outlining at least 70 different steps on the path to diagnosing ASD. Unfortunately, the complicated, time-consuming, and structurally designed process provides many opportunities for systemic racial bias to come into play.

For example, physicians who conduct autism screenings only in English have little ability to meaningfully communicate and share screening results with a mostly Spanish-speaking family, making a family less likely to follow up on a referral, which eventually leads to no diagnosis and worse outcomes for the autistic child. 

Overwhelming evidence shows that the majority of children who are diagnosed with autism are white. While Latinx and African American children who exhibit ASD-characteristic social and behavioral tendencies are more likely to be labeled by teachers as being troublesome in class or having problems with behavior rather than showing signs of autism.

As a result, minority autistic children are less likely to receive a diagnosis (and are therefore less likely to receive treatment). According to Dr. Broder-Fingert, it used to be a theory in the medical community that race actually played a part in which kids were born with autism and which were not, but it is now very clear that “this is systemic racism [contributing to the racial split in diagnoses] and minorities are being missed by the healthcare system.”

Even minority children who do receive the initial steps of an autism diagnosis are less likely to have their diagnoses completed and treatment begun at an early age. Dr. Broder-Fingert revealed troubling statistics suggesting that Latino parents identify fewer ASD symptoms and report less with regard to parenting their autistic children, implying that these parents receive less information and are given limited knowledge about how to support their child most effectively.

Autism diagnoses are also affected by where a family lives, as different states’ laws can make it comparatively easy or significantly more difficult for a family to receive a diagnosis the older their child gets. This disparity also extends into autism treatment: psychotherapy for minority youth may be less effective in a community with more anti-black racism, for example.

One major focus of Dr. Broder-Fingert’s talk was the associations of the term “implementation science,” the framework around which her lecture was based. Implementation science (or ImpSci as Dr. Broder-Fingert colloquially referred to it) focuses on structures and how they act as barriers (e.g. language as a barrier when it comes to structural racism). ImpSci as a field also pays attention to organizational and individual behavior, which can serve to acknowledge, for instance, that specific healthcare workers can be individually racist. 

By looking at structured racism in youth autism treatment through the lens of implementation science, Dr. Broder-Fingert emphasized, we can study which people and which institutions hold power and affect outcomes for autistic youth–thereby encouraging more engagement among community stakeholders as we seek to address the bias inherent in the healthcare system.

Dr. Broder-Fingert ended her lecture with an Audre Lourde quote: “The master’s tools will never dismantle the master’s house.” As we strive to promote better outcomes for minority autistic youth in the future, we must work to develop alternative systems to our current frameworks of structured racial bias in medical treatment.

Presentation Snapshot via Zoom event screenshot