Racial Disparities in the Diagnosis of Autism Spectrum Disorder

There are significant racial inequities existing in access to services for youth with autism spectrum disorder (ASD). Multiracial children are diagnosed with ASD later than their White counterparts, report difficulty accessing treatment services, and ultimately experience worse health outcomes.¹

We spoke with Doris Lebischak, MD, a child and adolescent psychiatrist with over 37 years of experience, about this important and vital issue.

Why do racial disparities exist in the diagnosis of autism spectrum disorder, or ASD?

Dr. Lebischak: Structural racism, in its many forms, affects access to health care. It is also in the health care industry. For example, structural racism affects income and education. Income and education are directly associated with one’s access and proper use of health care, as it acts as a cascade effect and a pervasive disease.

What must providers and families consider so they don’t reinforce or perpetuate systemic racism in the diagnosis of ASD?

Dr. Lebischak: Providers and families together need to acknowledge it is present. It has lived in all cultures and has never been eradicated during any time in history. It’s a disease within our country that has to be managed by all of us.

For example, the disparity delays the identification of individuals with the diagnosis of autism. Providers need to be aware of the disparity and be more vigilant. Families need to know they may be at increased risk and take steps to care for their health. I recommend keeping appointments, following recommendations, and working with providers or seeking someone you can work with to determine the right path forward. Asking questions or seeking information if you feel misunderstood is critical.

As a society, we must learn about and practice identifying racism within ourselves and our environment. We must take responsibility and do our part to eradicate racism, particularly when it comes to the diagnosis of autism in a child or teen, no matter their heritage or background. Be mindful that asking for a change and following up when it occurs can help reinforce the behavior. We all need to be willing to make the effort to manage and nudge the cultural disease of racism away.

How can the system work together to close these gaps and destigmatize disparities when it comes to ASD?

Dr. Lebischak: Structural racism significantly adds to the stress of the individual. It can account for 30% of one’s overall stress.² In a family with a child who has been diagnosed with ASD, the disparities and the level of stress can have a tremendous effect on the parents and potentially the larger family unit. There is high risk for behavioral health disorders and chronic disease.

Health care providers need to evaluate and monitor family members who may be at this increased risk. Families need to educate themselves and seek care when their functioning is impaired.

The health care industry is acclimating to AI (artificial intelligence). The work we put into monitoring disparities of all races, religions, and classes in our industry will be multiplied as we move toward this explosion. I see AI as “the hope” of monitoring and eradicating racism in health care. However, while technology is increasing our ability to help fight racism in some sectors, we still need to address this disparity in other sectors that affect our health, including income, education, environmental, emotional, social, physical, and spiritual factors.

Reference

1. Broder-Fingert S, Mateo CM, Zuckerman KE. Structural Racism and Autism. Pediatrics. Published online August 24, 2020. doi:10.1542/peds.2020-015420
2. Churchwell K, Elkind MSV, Benjamin RM, et al. Call to action: Structural racism as a fundamental driver of health disparities: A presidential advisory from the American Heart Association. Circulation. Published online November 10, 2020. doi:10.1161/CIR.0000000000000936