Last month we talked about racial disparities in the diagnosis of autism (and probably all modes of neurodiversity.)
This month, I want to think about the disparity of diagnosis between boys and girls. Even as recently as 2017, best estimates are that for every 4.2 boys diagnosed with autism, only one girl is diagnosed.
This month, I want to speak to Women’s History, which is unfortunately, a history of erasure. Women’s History in terms of autism and neurodiversity research is nearly nonexistent on both sides of the bench. Girls and women haven’t been studied, and few researchers have been women. We are erased to the extent that it seems authors can’t even find the correct words to refer to us. Sure you can point out Lorna Wing or Temple Grandin to me, but in those instances, I say that the exception proves the rule.
For instance, last Fall, right abut when I came on board with Evolve Coaching, I was scrolling through PubMed, in my never ending patrol for research about autistic women and girls, and I came across what at first seemed like a promising bit of literature “Sex and Gender impacts in the behavioural presentation and recognition of autism”
I got through just the abstract before I was squealing and texting Heather a screenshot of the paper because I simply could not believe what I was reading: “With increasing awareness of potential differences of autism presentation in nonmale versus male individuals, this review…”
“NONMALE!!! THEY CAN’T EVEN SAY GIRL OR WOMAN. NONMALE!!!!”
Yes, I went all caps in my dismay.
This was the most succinct example of the autism research state of affairs that I’d ever seen: there are males, the default category, and there are nonmales.
I honestly can’t recall seeing a more complete sort of exclusion or othering. "We actually lack nomenclature for this category." This is a total erasure of the category of female, not to mention a double erasure of our expanding understanding of gender identities and you don’t need a degree in science or economics to know that it’s hard to achieve any sort of equity if you aren’t even seen at the table where equity is being apportioned.
Though actual equity is a substantial concern, the real boots-on-the-ground problem isn’t academic language or notions of justice. Consider this: in the autism and neurodiversity community, we often speak of the “services cliff,” the point after secondary school when funding for services, and even services themselves, simply disappear for autistic and neurodiverse kids- literally causing the ground beneath them to seem to suddenly disappear.
We understand this “cliff” as a problem, we see the services as invaluable to our emerging adults, and we try to remedy the problem, to prevent them from falling off of the cliff. They’ve made tremendous progress because of the support that they’ve had access to. We recognize that support is often a lifelong need, and we want to provide it because we know that with appropriate support autistic and neurodivergent young adults grow into independent and often self-sustaining adults who live satisfying lives.
Now consider the many NONMALES that were too invisible to receive diagnosis or any sort of support. The “cliff” that we fear our young friends will abruptly fall off of is a cliff that these invisible, uncounted neurodiverse people have to climb up. They have to exhaust themselves scaling the cliff and struggling to have their needs first validated and then rather spottily met in a scientific and medical community that maybe doesn’t even recognize them as existing.
It’s for this reason that Women’s History Month, or Black History Month aren’t simply little academic exercises. They are monuments to absence, to all of the history that’s been ignored, erased or deleted because NONMALES or NONWHITES weren’t important enough to study or record or curate. They are annual reminders that continuing to ignore, erase and misplace nonwhite nonmale narratives must, in 2021, only be construed as intentional and systemic. They are to remind us that those erasures aren’t just theoretical but result in actual suffering, deprivation and harm to the uncounted, every day here in 2021.