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The Evolver: Racial Disparities in Autism Diagnosis

Updated: Feb 23, 2021

I’m co-authoring a chapter in a textbook for an MSW grad student text-book.

The chapter addresses something that a lot of low-support-needs neurodiverse people know only too well: the challenges posed by their “disability” is almost uniformly caused by conflict with neurotypical social assumptions.

In our chapter, the remedy for this social impasse is engaging in “cultural humility.” Cultural humility as a practice involves examining the assumptions that underpin our notions of “how things are done,” “how we are supposed to act” and “The right way.” In this case we are asking neurotypical (NT) people to consider that their orientation to the world isn’t the only one, and isn’t necessarily the only right way. It’s a big ask of anyone, even in as narrow of an exchange as diplomacy between NT and neurodivergent (ND) individuals in a workplace, but it is not too difficult to grasp and see the value of - so, huzzah! - all of our problems are solved!

Not so fast my friend!

If we’re going to be intellectually and ethically honest about practicing cultural humility, we have to be honest about much more than the intersection of NT and ND social hierarchy. Even that social hierarchy relies on an assumption that most people in the West share: the notion of what “good manners” are...and what they are is white - and developed, historically speaking, by white Europeans as a way to separate the “presentable at court” from the “peasant savages.”

We already know that autism research and autism diagnostic criteria are deeply skewed white and male. From the start, research has been narrowly focused on white male children. It’s a larger problem than simply prioritizing white children for ASD intervention.

Let’s stop and think for a minute about all those black and brown kids who went through childhood undiagnosed. Let’s also think about what the West’s general lack of cultural humility and assumption of the supremacy of white manners means for those undiagnosed neurodiverse black and brown kids.

In kindergarten and primary school there is generally a heavy focus on learning and incorporating elements of being a “good citizen.” For small people, this revolves around expectations that the child will learn to be sociable and exhibit what are assumed to be good manners. These can be seen as markers of maturity and readiness for promotion.

Imagine if you will, that you are a teacher and there is a boy in your third grade class who can’t seem to regulate his volume when he speaks, who has a flat affect, whose voice has a harsh tone. He struggles to control his impulses and is very excitable. He has chronic problems fitting in with his classmates. He drops, breaks, and loses things constantly. Every day, he bumps into his classmates while walking, never seems to notice or apologize. He doesn’t follow directions, and only seems happy to do his work when a special interest is involved.

You’re a trained professional teacher. You interpret all of these things as signs of some sort or learning disability. He clearly needs support: he has motor skill problems, memory problems, self-regulation problems and attention problems!

Now, for the sake of argument, imagine that boy is not white. Maybe even imagine that child is a girl. Wild talk, I know. In these cases, there’s a better than average chance the child will be judged “rude, unruly, disruptive, maybe even “aggressive.” Same characteristics as our imaginary white kid, totally different outcome for the child. This child is more likely to be judged poorly, more or less because they aren’t performing the “manners” or deference that are expected of their race or gender.

If you have never absorbed the idea of cultural humility as a tool for examining your biases around social rank, or neurodiversity, you may have decided that the second child, the black or brown child is careless, anti-social, disobedient and maybe even that all that bumping into people is actually aggression. Does that child get a referral for evaluation for a learning disability or does that child get labelled a problem? What if instead of getting necessary support, that child goes through school getting negative feedback about most aspects of the way he simply inhabits the world?

We know that persistent gaps in diagnostic rates exist between white communities and black and brown communities in the United States. The ramifications of this expand far beyond classroom struggles. It’s a social justice issue: autism appears to be twice as prevalent in those incarcerated. This is troubling, but it is even more so troubling when we factor in the over-representation of black and brown citizens in the US Prison population.

This is just one example of why we at Evolve are committed to direct support and to community outreach to increase awareness of neurodiversity. We strive to address and remedy institutional, cultural and cognitive systems of oppression. We seek to hold organizations, institutions, and ourselves accountable for repairing cultural erasures and harmful assumptions. We work to educate our communities and raise awareness of neurodiversity in its many intersecting forms. We do this by working to close the services gap created by systemic inequities that marginalize communities of color, low income communities, and New American communities.


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