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Culture, Stigma, People of Color & Autism: Thoughts from a Black Pediatrician and ASD Mom

Author: Dr. Mary Holden Jones

As a pediatrician of almost 20 years, I thought that I had a pretty good grasp of Autism Spectrum Disorder (ASD) from a medical perspective. I learned in my pediatrics residency the nuances of diagnosing children with this disorder. I also learned in residency and after the struggles of getting the earliest possible introductions to therapies for the children and their families. I have treated cases ranging from mild to extremely severe. I have treated families from different cultures, nationalities, religions etc. I have also treated patients from every socioeconomic class. The common thread in all these patients is that once diagnosed, the main goal for all of us was getting the intervention that these kids needed as soon as possible. This was true regardless of any differentiating factors between these children such as race, ability to speak English or culture. Once these kids received the diagnosis of ASD the caregivers’ main focus and mine was to obtain what was needed to help them reach their full potential. Connecting patients and families with the needed services is not an easy task over the years. It has become even more difficult now. Scarcity or resources and increased ASD diagnoses are contributing factors.

However, there is another factor that is causing delayed diagnosis and treatment. As more research is being done on how to diagnose ASD and introduce interventions as early as possible, there is a troubling trend being noted. Population surveillance data reveal later age at diagnosis for African American and Hispanic children, suggesting that there are barriers to screening and surveillance and referral for diagnosis in groups with other unmet health needs. Race, ethnicity, and socioeconomic status did not affect the accuracy of routine screening tests for ASD in low-risk toddlers, suggesting that screening with appropriate supports for follow-up care can lower the age at diagnosis in diverse populations.1 This information is troubling because it shows the barrier to getting diagnosis and treatment for these populations is not the accuracy of the screening tests available but access to the tests for certain segments of society. This is a major issue that needs to be addressed. The possibility for early diagnosis is drastically reduced without access to screening tests. Certainly, more research needs to be done to discover why race and socioeconomic status are a barrier to diagnosis and access to therapies. Notice that these two factors are not mutually inclusive. However, it would stand to reason that if a patient is affected by both their diagnosis and treatment is even more in jeopardy.

I have experienced this firsthand in my own family. One of my children has ASD and was not diagnosed officially until 12 years old in the summer between 5th and 6th grades. Over the years we took him to his pediatrician for regular health checks and vaccinations. Being a pediatrician myself, it was important for me to have another pediatrician care for my children so that I could have objective eyes on them. While they received very good care, I don’t remember any significant questions or evaluation that would have led to an ASD diagnosis for any of them. This child was known and shy and they needed things done a certain way and wasn’t good at transitioning. I remember joking with the doctor and others that he was just like his dad (who was diagnosed just a few months before his child at 46 yo)! Astonishingly, I am the one who had suspicions about my husband.

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