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Inequities in Treatment
A perspective from Braden Wilkinson
Have you ever met someone who changed the way you view the world? From October 2019 to May 2021, I worked as a habilitation technician, assisting a young man with autism spectrum disorder (ASD) named Pete. Pete is an African-American man from an economically disadvantaged background, and my experiences with him opened my eyes to the reality of systemic racism, and its impacts on individuals and families with intellectual and developmental disabilities. These experiences with Pete prompted me to investigate the research surrounding racial disparities in autism diagnoses and treatment. The data clearly shows wide discrepancies in age of diagnoses and access to treatment. The time to address these discrepancies is long overdue. How are these problems manifested, and what can we do to remedy them?
Delay in diagnosis is a pivotal component of this issue. Data illustrates a three-year gap from recognition of developmental delays by African American parents to receipt of an Autism diagnosis. Another study demonstrated that African American and Hispanic children were more likely to be diagnosed with ASD after the age of 4 than their White counterparts. This is crucial because these children are not able to obtain the necessary services and resources during this time of prime neuroplasticity and synaptic proliferation. Misdiagnoses such as ADHD and conduct disorders are also much more common among racial minority children with ASD. Treatment disparities present themselves through availability of care, prevalence of referrals, total service hours, and the number of unmet needs.
These results should make it clear to all of us that these disparities need to be redressed immediately. In order to solve these issues, we must know why they exist in the first place. Factors such as a lack of access to educational and financial resources, issues with Medicaid, cultural and language barriers, and the lack of culturally competent diagnostic tools all contribute. Discrimination, fear of stigma, redlining, and implicit bias among providers are also key components. With such a wide variety of elements giving rise to these issues, is it even worth trying to tackle them? And if so, how can we best confront them? I give a resounding yes and offer a few suggestions that will help us combat the obstacles faced in achieving equity in ASD treatment and diagnosis.
Helping the families of these individuals is a great place to start. My friend Pete lives with his aunt, who due largely to systemic factors, does not have all the tools necessary to support him. An intervention from a 2019 study called The Meeting FACES Workshop is a perfect example of something I wish she had access to. FACES stands for Fostering Advocacy, Communication, Empowerment, and Supports and was originally developed in Chicago. It was modified to be targeted toward families here in central North Carolina, with the goal of helping racial and ethnic minority families learn about, and get connected to autism services. There are plenty of resources for these families. The problem lies in accessing them, which Meeting FACES strives to address through its six training sessions of four hours each. Meeting FACES and similar programs need to expand throughout the state. Rural communities such as the one Pete lives in could greatly benefit from this intervention, and if we want to achieve equity in autism treatment, this is a great place to start.
Extensive implicit bias and cultural competence training must be mandated for all autism providers. Implicit bias has a lot to do with children of color being much more likely to be misdiagnosed. While it may not automatically solve every problem right away, the understanding of, and desire to combat their biases may help providers with issues such as misdiagnoses and miscommunication with families. Project ECHO at UNC is something that healthcare providers should certainly investigate as well, as it confronts issues such as long waitlists and travel that disproportionately affect minority families. Diversifying the field is also critical, as just 2% of autism providers are Black.
What can you and I do about this issue? This is the question I have been wrestling with for quite some time. I assert that we can support policy that aims to tackle structural racism, especially as it relates to autism services. A great example of this would be raising Medicaid reimbursement rates as they relate to autism evaluation and services. We can also publicize information about resources such as the Autism CARES Act, which focuses on the needs of underserved communities and obstacles to evidence-based interventions. With Pete in mind, I stress that these suggestions will go a long way in mitigating the effects of systemic racism in autism diagnoses and treatment. Being informed is imperative, but if we want to see these discrepancies dissipate, we must be willing to tackle them at the structural level.
References
Aylward, B. S., Gal-Szabo, D. E., & Taraman, S. (2021). Racial, ethnic, and sociodemographic disparities in diagnosis of children with autism spectrum disorder. Journal of Developmental & Behavioral Pediatrics, 42(8), 682–689. https://doi.org/10.1097/dbp.0000000000000996
Bailey, M. (2020, August 27). Autism disparities and racism: An interview with Sarabeth Broder-Fingert, MD, MPH. HealthCity. Retrieved March 9, 2022, from https://healthcity.bmc.org/policy-and-industry/autism-disparities-and-racism-interview-asd-expert
Constantino, J. N., Abbacchi, A. M., Saulnier, C., Klaiman, C., Mandell, D. S., Zhang, Y., Hawks, Z., Bates, J., Klin, A., Shattuck, P., Molholm, S., Fitzgerald, R., Roux, A., Lowe, J. K., & Geschwind, D. H. (2020). Timing of the diagnosis of autism in African American children. Pediatrics, 146(3). https://doi.org/10.1542/peds.2019-3629
Courchesne, E., Pramparo, T., Gazestani, V. H., Lombardo, M. V., Pierce, K., & Lewis, N. E. (2018). The ASD living biology: From cell proliferation to clinical phenotype. Molecular Psychiatry, 24(1), 88–107. https://doi.org/10.1038/s41380-018-0056-y
Mandell, D. S., Ittenbach, R. F., Levy, S. E., & Pinto-Martin, J. A. (2006). Disparities in diagnoses received prior to a diagnosis of autism spectrum disorder. Journal of Autism and Developmental Disorders, 37(9), 1795–1802. https://doi.org/10.1007/s10803-006-0314-8
Pearson, J. N., Traficante, A. L., Denny, L. M., Malone, K., & Codd, E. (2019). Meeting faces: Preliminary findings from a Community Workshop for minority parents of children with autism in central North Carolina. Journal of Autism and Developmental Disorders, 50(1), 1–11. https://doi.org/10.1007/s10803-019-04295-4
Project ECHO Autism. (2021, November 17). Services Across the Lifespan for Individuals with Autism Spectrum Disorder: TEACCH® Autism Program. https://teacch.com/trainings/project-echo-autism/
Smith, K. A., Gehricke, J.-G., Iadarola, S., Wolfe, A., & Kuhlthau, K. A. (2020). Disparities in service use among children with autism: A systematic review. Pediatrics, 145(Supplement_1). https://doi.org/10.1542/peds.2019-1895g
Valicenti-McDermott, M., Hottinger, K., Seijo, R., & Shulman, L. (2012). Age at diagnosis of autism spectrum disorders. The Journal of Pediatrics, 161(3), 554–556. https://doi.org/10.1016/j.jpeds.2012.05.012
What are the goals of the Autism CARES Act? (2021). U.S. Department of Health & Human Services Health Resources & Services Administration: Maternal and Child Health. https://mchb.hrsa.gov/programs-impact/programs/autism
“Viewpoints” on Chapelboro is a recurring series of community-submitted opinion columns. All thoughts, ideas, opinions and expressions in this series are those of the author, and do not reflect the work or reporting of 97.9 The Hill and Chapelboro.com.
