Discovering the fundamental truth about how my brain works in my 40s has been a fucking trip.
And as an AuDHD person who is suddenly learning how much that handful of letters can change the way I see myself and where I fit into society, I’ve come to the conclusion that diagnosis for an ND individual is identity affirming healthcare, much like gender affirming care would be to a trans or non binary person.
Let me start by saying that I am a cis-het woman, and have no personal claim to understanding what trans and non-binary people go through.
And while I could write speculatively about some of the ways that our culture has failed trans and non binary people in denying them the opportunities to embrace and celebrate the truth of who they are, I’m going to focus instead on describing what I mean as “identity affirming” in the context of neurodivergence, and in doing so, hopefully, my analogy will come across as respectful and considerate and not presumptive or dismissive.
Language seems like as good a place as any to start.
There’s been a recent flutter of discussion around person-first language vs. identity first language when to comes to neuro-developmental disabilities such as autism and ADHD.
For example, person-first language would say “a person who has autism” whereas identity first language would say “an autistic person.”
And there are a variety of arguments for why someone would prefer to use one over the other, and they’re all valid, and like anything, it’s always worth deferring to the actual person to determine which they consider appropriate (just like pronouns!).
Personally, I prefer the label neurodivergent, or ND, as opposed to specific disorder-focused language. This is largely because of the weird overlap and intermingling between ADHD and autism in my brain, and the way that the stigma of hyperactive little boys and Sheldon Cooper don’t cling so temerously to it. Also, while both ADHD and autism are disabling in many ways, I prefer to couch the terms of my identity in more neutral phrasing that leaves space for the fact that my brain can also do some pretty nifty shit.
Regardless, it’s not particularly helpful to try to separate someone’s personhood from their identity. No matter what variables, what tags you apply as identifiers, people are people, and deserve all the rights and respect thereof. Personhood is the bare minimum.
Even though personhood is a wide-reaching umbrella under which a hugely diverse population can congregate, it doesn’t mean we are all offered the same protection from the rain.
Just because we can mostly agree that we’re all just people, that it’s the broadest category to which we all belong, personhood doesn’t define how we are seen, or treated. Identity does.
And identity is faceted and fascinating.
A person’s identity can be made up of many different components. Reducing someone’s personhood, that is, the basic rules by which they are allowed to exist in the world, down to just one element feels pretty awful. (Take, for example, the crumpling loss of self that I feel when I am recognized exclusively as “someone’s mum” instead of the mosaic of other aspects that make up who I am and frankly make me a lot more interesting than just my reproductive history.) But that sort of identity-reductive labeling is widely used as shorthand to define our belonging, or lack-thereof, in a set of narrow, pre-determined social categories.
And categories are important.
Human brains love sorting things into categories! This ability is developed around the age of 9 months, and marks a massive shift in cognition that all subsequent brain development depends upon. Babies’ brains develop in a sequentially parallel arc to the evolution of the brain as an organ – first the oldest parts of the brain responsible for the most basic elements of survival, then the relational and social parts, then finally the parts devoted to higher cognitive functions like language and abstract reasoning. As such, the category-focused part of the brain is quite primitive in its necessity, tied in to the intense visceral-emotional responses required for survival.
Of course, the first category we are assigned is gender. Then, a little while later, we start school, and very quickly we are sorted into a variety of other categories by parents, teachers, and our peers. Many of these categories depend on our ability to perform according to neurotypical standards.
And the problem with categories is that if you fail to conform, you are punished.
Humans developed as social animals. It’s our ability to work as a group that defines civilization. Our survival depends in a very real sense on being accepted. So being effectively exiled for innate differences in how we see ourselves and how we navigate the world, especially in our relationships with other people, can be a source of trauma. As serious as life and death.
And trauma can reshape the workings of our brains (and bodies!) even further, making society even more difficult to navigate from a functional standpoint.
Being neurodivergent (diagnosed or not) and being gender non-conforming can be fundamentally isolating aspects of identity. In either case, it’s not something that we’ve chosen, it’s not just a thing that’s happened to us, it’s part of what makes us who we are. Not the only part. Maybe not even the most important or interesting part. But certainly one of the parts that is first recognized by the category-loving portion of human brains. And when someone’s brain isn’t able to fit us into the basket where they think we should go, it chucks us into the “unknown” pile.
Now that ancient part of our brain that equates categorization with survival sounds the alarm. It’s trying to warn that uncertainty equals danger.
On this basic neurological level, being different equates to being dangerous.
So many of us who don’t fit in the baskets provided, whether they categorize us based on gender or our ability to make eye contact or sit still or the intensity of our interests and emotions, start being perceived as a threat from a very young age. Never quite belonging. Always outside looking in. And possibly not even knowing why.
Eventually, though, we start to figure it out. It takes a long time for some of us. Especially if the people closest to us, whom we rely on for support and understanding, are in denial.
Sometimes it’s not until well into adulthood before we come to the realization that we’re not broken, that we’ve just been sorted incorrectly.
That was certainly the case for me. And I’ve got a lot of work to do untangling the knots I tied myself in while trying to squeeze myself into the wrong basket.
Which brings me to the problem of diagnosis.
Getting an adult ADHD/ASD diagnosis is time consuming, expensive, and generally soul-crushing.
It’s degrading having to explain something that you know to be true about yourself to someone who sits across a desk from you and ticks off boxes on a worksheet. To have to convince someone with a bunch of fancy qualifications but possibly no personal experience, who has known you for all of fifteen minutes, to believe that you understand how your own brain and body work, and that it doesn’t fit in with the norm.
Yes, you’ve tried planners and exercise and healthy eating and “maybe just tone it down a little”. No, you’re not just depressed. No, it’s not “just a phase” and no, it’s not just because “it’s trendy.” And to “you don’t look autistic,” all you can say is “Thanks? I guess?”
The medical paradigm is so preoccupied with fitting us into diagnostic baskets that seeking support can cause many of us to re-experience all the trauma of having been mis-categorized our whole lives.
And I can’t help but imagine that there are some similarities between difficulties faced by someone seeking an identity-affirming diagnosis for ASD or ADHD and the path trodden by trans and non-binary folks seeking medical validation and support.
Am I claiming that getting medicated for ADHD the same as getting on hormone therapy? Of course I’m not. But does it serve a similar purpose? To help a person navigate the world in a way that makes it easier to be who they know themselves to be, without constantly having to justify their identity? Maybe so.
Does it cure the problem of badly-shaped, too-small baskets that we were sorted into in the first place? No.
But does it help us get closer to the baskets, to make us a little easier to sort, so we’re not always left in the rejects pile? It might.
Until we can do away with the baskets altogether, we need to make sure that people have the tools they need to make sure they get sorted into the ones they think they belong in, not some arbitrarily assigned one. And not relegated to “un-categorized other”.
Self-diagnosis needs to be valid.
So does accepting people’s identity even if they don’t “pass” for what you think they should.
And so does trusting that people know more about their bodies and their brains than the medical establishment. People deserve agency when it comes to their identity.
Affirming identity, whether it’s gender or neurotype, allows non-conforming people to access their community, and the support they need to live a more authentic life.
It gives us a chance at belonging. And just as surely as difference equates to danger in the ancient parts of our brain, belonging promotes a very real sense of safety and well-being. And that is a basic right all people deserve.