Diagnosis Day, Canaries, and Coal Mines

Yesterday I was formally, officially diagnosed with autism. A licensed psychologist qualified to evaluate autism in adults interviewed me using a diagnostic tool called the GARS-3. I scored a 99, which equates to “very likely” to have autism and “requiring substantial support.” If I had scored 101 or more, that would mean I am “requiring very substantial support”—the highest category on the test.

I had already completed a more comprehensive diagnostic using a generally better respected tool called the RAADS-R (you, too, can take it for free online at this respectable website run by doctors) at the encouragement of my therapist a few years ago (who, despite being one who would know, is not clinically qualified to sign off on a diagnosis). On that test, I scored 151 out of 240, with 65 being the threshold for possible autism. In other words, I am also very definitely autistic according to that metric.

This is not even counting the times I’ve been “peer reviewed” as autistic by, well, peers. And even by brow-raising professionals who have diagnosed other blood relatives (in families, as they say, this stuff practically gallops).

(It also bears saying that I have definitely received the “but you don’t look autistic” line from both a friend and a professional who only met me as an adult over 35. Oh, I know. I’ve worked very hard to become so.)

All told, this diagnosis is the stuff of happy dances. Oh yes—even counting the full week of crying that commenced after I took the RAADS-R (this is oversimplification, but it was half relief at validation, half anger that I wasn’t told sooner), I have been very, VERY happy to feel like I’m finally safe enough (thanks to a combination of my own inner work and external social validation) to stop, as it is called, masking. Avoiding who I am. Covering up who I am. To fully know, embrace, and accept who I am and how I’m made down to the core—after being socialized to be a hateful stranger to myself for my entire life before.

In large part precisely because I am autistic, I felt the need to check all the socially-mandated legitimization boxes before wholly owning this huge facet of my identity in public, though if you’ve followed me at all in the past few years, you’ve seen me gradually and organically trying the neurodivergent/spectrummy titles on for size across social media and putting them through their paces. All that to say, I’m excited that I finally feel completely free to talk about how this shows up in my body, in my life, without apology or well-I’m-not-a-professional-but caveats. That will never mean I speak for all or even most autists, but it’s incredibly good to simply speak without reservation for myself.

Particularly since autism has made speaking up for myself my whole life very, very, very hard. And when you pair that proclivity with trauma, and especially with abuse, it gets damnably harder.

Which is precisely why I have made such a point of speaking up, fighting for my voice, anyway. That, and because so precious few others would speak up for me.

I have had to learn in the hardest of ways that I must be my own advocate, because I cannot depend on anyone else to be—and, otherwise, I might have been ended. Worse, so might have my children, in ways both figurative and literal. This is one of the terrible truths I’m tackling as I write my memoir now.

This has been, I should add, why it was so unimaginably wonderful when a few priceless souls finally began to stand up for me just in the past few years. You know who you are, goldhearts.

At least some if not many autistic people need others to literally speak for us because the physical act of getting words out is so much harder than it is for the average person. I know I am not alone in this given how often I have to speak up—literally, advocate—for my other autistic family members (which, guess what, also saps any reserves I might need to dig deep into on my own behalf). This exhausted-by-talking trait has been misunderstood as mere introversion in our culture for some time now—and it is certainly true I’m an introvert—but it’s one of the markers of autism that I was specifically tested for on Monday. One I have in spades. As a non-autistic introvert will tell you, it’s not talking itself that bothers them so much as it is engaging at the surface level with a large crowd. Give them a small group of good friends and thoughtful conversation topics, and the dialogue will flow freely. But though I certainly vastly prefer the latter social scenario, for me the dialogue is still punctuated by awkwardness at regular intervals, no matter how much I otherwise enjoy it, and after a solid 3 hours of visiting, I am completely wrung out. I don’t want to utter a nonverbal sound until the next day if I can possibly help it.

Now if you know me personally and not through text on a screen, you might say, “But Steph, you never have trouble talking! You’re so articulate. You talk a lot, actually, and you’re really verbose.” I am! For a handful of hours at a time. And then I go home and collapse and have trouble stringing simple sentences together for the rest of the day. If I’m in a season of burnout, I’m not hanging out much at all, but if you’re one of the lucky few who has seen me at such a time, you’ve heard my tongue get tied over and over, heard me struggle for words and mix up their ends and beginnings. Or you’ve seen me sink into non-responsive silence where I barely acknowledge those around me. But most people never witness this fallout; they witness only the socially capable version that is a small percentage of how I function on the whole.

All of this is why it is so unspeakably hard that so many people still refuse to speak on my behalf. These are people who have met me, witnessed my struggle and heard large swaths of my story up close and personal—and simply shrugged, turned their backs, and walked away.

They couldn’t even tell me I was wrong. In fact, each person who spoke with my husband and I about the terrible treatment I received at the hands of a local community a few years ago openly acknowledged I had been wronged, in so many words.

But they would only admit this to me privately. And then they continued engaging with and investing in the leaders who had abused me as though nothing had happened. They went on supporting those leaders’ agendas and initiatives without once, to my knowledge, questioning or challenging their lies about and mistreatment of me. Indeed, they allowed these men to maintain all their social clout and capital within the community, continuing their friendships and platforming them in their public speaking places, while they left me and my family behind in the dust: forsaken, shut out in the cold. Speechless.

Since then, I have learned I am not the only one to be treated in such a way by this community—and, compared to the harm I’ve watched them do to others after me, I got off easy.

It’s never just the canary who dies first—in silence—who is poisoned by the coal mine.

Photo by Mirza Farhan on Unsplash

I’m not sure, even now, why or how I was ever given the courage or wherewithal to spring the lock and fly the cage. I do know, as I look back on my life and pour it into a manuscript, that I was born with it. That’s the autism, too.

Both the painful plumbing of the gut to find the scrap of sound to scrape through my vocal cords and make the protest—and the unwavering conviction that the protest must be made. If not by anyone else, then by me. No mater how excruciating it is.

This damned canary will sing. More than that—I will breathe free air. The toxins will evaporate, and I will soar in the light of the sun. I am slowly finding that it hurts far less to speak when one has left choking darkness far behind.

May you, reader, also find the light wherever it lies: in a diagnosis, in daring, even in desperation. None of us belong locked up in a mine—or in our minds.