Unmasking Racism in Autism Diagnosis
People of Color Receive less Support and Higher Stigma
Authors: Nicole Mar and Dr. Stephanie Holmes
As you may know if you have followed our podcast or blogs, we have been doing a focus on DEI in the topic of Autism and Neurodiversity. Dan and I are also doing research on NeuroDiversity in married couples. We advertised the research far and wide on social media and through providers who work in this field. We had 318 unique participants and out of the data less than 5% of the individuals identified as black/African American. Yet, the CDC reports that autism rates and prevalence are equal across race and culture.
As we went deeper into research, I had one couple of color who were able to be interviewed to represent the ND population’s minority, people of color. It was these quotes from these two respondents that made me stop and pause and ask Nicole Mar, a woman of color, her thoughts on joining me in writing about autism and race.
Respondent’s Responses to :What do you want to share about your experience about autism and race or autism and neurodiversity?
Interviewee 1: Neurotypical behavior in the Black community is a necessity because there's a lot of trauma. Knowing what I know now about genograms and the generational impact, I, personally, am only four generations removed from slavery.
I am imagining my great, great, great grandmother, born into slavery who was an infant when slavery ended. The values she learned as a result of her parents’ upbringing were passed all the way down to me. Now, I'm trying to deal with my trauma and not pass on that trauma to my kids. For example, there's a huge stigma about how we have to be two or three times better than our non-minority counterparts. This adds a lot of pressure, competition, and unwillingness to support each other.
With that being said, neurotypical behavior and mental health are not spoken of because that pushes people a step back from everyone else. That's where a lot of the avoidance and denial comes from. It also makes Black people avoid soft emotions. Showing that means the person has an issue — unlike our non-minority counterparts.
Hopefully, these facts bring some awareness to minority neurodiverse couples or neurodiverse individuals out there to help them live with neurodiversity.
Interviewee 2: There is not a lot of support for neurodiversity, especially with Blacks in the Black community.
We have not told anyone about my husband’s diagnosis yet, and it's not out of shame, it's really because we just need time to process it, and I don't want well-intentioned family trying to diagnose my children and point to them instead of letting us do our job as parents and go through testing.
It can be isolating, and there isn't a lot of information out there about neurodiversity in the Black community, obviously. I think we found our neurodiverse coach through a search online. Thankfully, we lived in the same state, and we were able to reach out and visit.
Unmasking Racism in Autism
By Nicole Mar
Your child has autism: It is a statement that sends shock waves of fear into the minds of many parents.
Will my child be treated kindly?
Will my child receive a good education?
Will my child have a bright, adult future?
While much has been done to quell the fear around autism and eliminate the idea that it needs to be cured, some affected families are still outliers, silently on the sidelines, choosing not to enter the conversation. Why? Because as a marginalized people group who have been prone to degrading isolation and stereotypes, they can’t risk another strike against them. Who are these people, you ask? African Americans.
I can imagine you might be rolling your eyes—yet another writer arguing that Blacks are mistreated, that systemic racism is a source of great pain. Blah blah blah. Here is the reality: it’s the absolute truth.
As true as it was during the days of slavery, it remains true in 2023.
Black people, and, in particular, Black males, are seen as a source of imminent danger. They are not to be trusted. They are not to be extended grace, opportunities, favor, respect, or dignity. So, when this visible identification is combined with the invisible condition of autism—which impacts one's ability to communicate—silence about the condition or symptoms is often the preferred method of choice. For those with low-support needs, also known as Level 1 autism, the go-to method is to blend in, deny differences, refuse academic and/or employer support, and stay away from doctors.
So, when this visible identification is combined with the invisible condition of autism—which impacts ones ability to communicate—silence about the condition or symptoms is often the preferred method of choice. For those with low-support needs, also known as Level 1 autism
This means that Black male children in school who have less noticeable signs of autism will often slip through the proverbial cracks since their parents, in an effort to keep them safe, will not reach out for support. After all, this heightens their risk of child protective services removing the child. These parents will not share that a child has meltdowns at home. This, after all, increases the likelihood of the child being suspended, or, worse, expelled. The same holds true for adult men with autism signs and symptoms. They will not seek accommodations at work because this increases their risk of being fired since employers may seek out opportunities to catch them making errors or will ostracize and belittle them right out of their jobs.
If the desire is for systematized, fair treatment for all, then leaders within education, the medical field, government, prison systems, housing, and pharmacy will need to accept that they are likely showing overt racism against Black people, or they will have to admit that there is a chance they are doing it unknowingly. Humans who sit in board rooms making policies and exacting rules of law will need to humble themselves, acknowledge an American history fraught with injustice, and take measures to intentionally act differently, question their assumptions, dig into their motives, and seek a different path.
If that would happen, Black people would be able to freely share their challenges. They would be able to move in this country, their cities, their neighborhoods, their schools, and workplaces with a sense of safety. They would lay down the heavy and burdensome mask of pretense and access the resources they so richly deserve. Parents would not feel forced to threaten their sons into perfect behavior in order to keep them safe from dangerous school leaders.
Black people, especially those twice exceptional—males with autism—need the opportunities that would be afforded to them if only they were treated with kindness and fairness. It would make our country a better place. It would make us, as individuals, better people.
Additional Note from Dr. Holmes:
Please follow us June 19th with pediatrician, Dr. Mary Jones who will be sharing more insight into this area. We will discuss the CDC site reportingThe CDC says, “ADDM reports have consistently noted that more white children are identified with ASD than black or Hispanic children. Previous studies have shown that stigma, lack of access to healthcare services due to non-citizenship or low-income, and non-English primary language are potential barriers to identification of children with ASD especially among Hispanic children. A difference in identifying black and Hispanic children with ASD relative to white children means these children may not be getting the services they need to reach their full potential.”
We will talk more about this when our Juneteenth Show with Dr. Mary Jones discusses this article below more fully.
I have recently found this resource in my search for support for the black/.African American community.
Autism in Black