The Shape of Validation
On autism, diagnosis, legitimacy, and being understood—by others, and sometimes by yourself.
I’m not officially diagnosed.
I’ve never hidden that fact, but I’ve also never exactly led with it, because I know what it signals to people. For some, that single omission is enough to quietly downgrade everything else I say about autism. It places my perspective in a lower tier of credibility, as if direct experience, sustained study, and structural insight all become provisional without the external sign-off of someone trained to observe me from the outside. Someone who, in all likelihood, wouldn’t even grasp the foundation of what I’ve spent years building. And for a long time now, I’ve lived with that risk—not without friction, but with a kind of hard-earned clarity. Because I know what I know. And more importantly, I know how I know it.
That’s not just philosophizing—I mean it literally. I know I’m autistic the way I know I’m right-handed, the way I know how to construct a logical argument, the way I know that my internal reality is coherent and structurally sound, even when it doesn’t map neatly onto the way most people experience the world. I know I’m autistic the way anyone knows something that has been examined, reexamined, dissected and reconstructed—and still holds up under scrutiny.
But more importantly, I know I’m autistic because I had no other choice. I had to figure out why so much of my life hadn’t made sense until it suddenly did. I didn’t arrive here by way of identity exploration or social trend alone—though I know those paths are valid and meaningful for many of us. For me, the recognition emerged less as a discovery and more as a convergence—a structural realization that clarified what had always been present but misnamed, misread, or missed entirely. I came to it through recursive analysis and a deeply uncomfortable unraveling of decades of misrecognition.
And I didn’t stop at recognition. I studied. I broke apart every self-assessment I could find—the AQ, the RAADS-R, the CAT-Q—I deconstructed every question of every one of those tests on Embrace Autism. And that was just the beginning. I studied the DSM—not just the 5th edition, but the IV and the III before it. I own them. I’ve cross-referenced and compared the language and the shifting definitions and the throughlines that expose just how little these deficit-based systems understand about autistic cognition at a foundational level.
I immersed myself in online autistic communities—to which I owe my deepest gratitude. I watched, read, listened, shared. Not just to find commonality, but to observe structure. Pattern. Recursion. I saw myself again and again, not just in what people said, but in how they said it.
And then I began to build. Not just an identity, but a framework. A cognitive model, a structural theory rooted in monotropism but expanding beyond it. I began to understand how autistic cognition actually works—not as a list of traits, but as a system. A mode of being. A recursive attentional structure that makes complete sense once you stop trying to pathologize it.
And the irony is, this process I’ve gone through—the depth of study, the lived experience, the structural clarity—has required more sustained, focused engagement than most clinicians are ever expected to bring to the topic. The majority of non-autistic mental health professionals I’ve spoken with have never even heard of monotropism. They don’t know the origins of the diagnostic tools they use. They’re not familiar with how those tools were shaped by outdated behavioral models or how much they depend on interpreting autistic traits through a fundamentally neurotypical frame. And yet, their assessment is accepted as definitive—not because it reflects a deeper understanding, but because the system was built to grant authority to their observations, even when they’re misaligned. That’s the contradiction I keep coming back to: I’m expected to trust a framework that demonstrably doesn’t understand me as much as I understand it.
I’ve thought about pursuing it anyway. An “official” diagnosis. Not for clarity, but for leverage. For the ability to say, yes, I’m officially diagnosed, now can we please talk about these things that actually matter? I’ve imagined myself in the room, speaking with prepared precision rather than raw info-dumping, offering the kind of insight into my own cognition that most professionals wouldn’t typically expect from a client—but that so many autistic people have had to develop simply to survive being misread. Not because we set out to master the language of psychology, but because we were left to make sense of ourselves without it. And in those imagined moments, I’ve already watched what would happen next—because many of us have lived it. That flicker of surprise when we speak clearly. The disbelief that someone can articulate their own structure so well. The quiet shift from listening to assessing. We know that look. We’ve seen it. And we’ve learned what it usually means. That our clarity might be read as over-intellectualization. That our self-awareness might be interpreted as defensiveness. That our transparency might be pathologized instead of understood. Because the system isn’t built to recognize autistic people who understand themselves better than it does. It’s built to flatten us. To reduce us to traits and scores and observed behaviors filtered through normative bias.
I’ve been there before, though I didn’t fully appreciate it at the time. Years ago, before the medication and therapy and eventual autistic realization, a friend who was working on their master’s in social work asked if I’d volunteer for a mock intake. I said yes, partly out of curiosity, partly because psychology had always fascinated me, but mostly because I thought I could offer them something meaningful. I answered the questions carefully, honestly. I didn’t hold back. Not because I couldn’t help it, but because I chose to share. I wanted to be useful, helpful. I thought maybe they’d see something in it—maybe they’d understand a little more about how insight doesn’t always present the way textbooks say it should. But I’m almost certain it didn’t land that way. Not out of malice but misalignment. Just the filter of a system that teaches people to view openness as instability. That treats depth as deflection and rewards emotional distance over real understanding. I knew what I was doing, but the frame just wasn’t built to hold it.
And that’s part of why I’ve hesitated with pursuing a diagnosis. Because I know that if I walk into that office, I’ll be met with an assessor focused on what’s missing instead of what’s working. And even if they see enough to diagnose me, they won’t see me. Not the way I see myself. Not the way I’ve spent years learning to see myself.
Still, part of me wants to do it anyway. Not because I need it to know who I am, but because I know how many people need that validation before they’ll listen. Before they’ll read what I write without silently wondering if I’m just projecting. Before they’ll recognize that my critiques of autism research, deficit-based psychology, and behavioral diagnostic systems aren’t just thought experiments—they’re lived, embodied knowledge. And maybe, with that piece of paper, I could push the work further. Maybe I could shield it from dismissal just a little bit more.
But even that is a trap. Because the moment I seek diagnosis for the sake of legitimacy, I’m reinforcing the very structure I’m trying to deconstruct. I’m appealing to the authority of a system that I know is fundamentally unequipped to understand the thing I’m asking it to validate. That isn’t integrity. That’s performance. And I’ve spent enough of my life being asked to perform my truth in order to make it legible to others. I don’t need to keep doing it.
Still, there are things I haven’t said yet. Things that matter.
I know, I have comparative privilege. I live with what are often called "low" support needs, though that phrase has always felt hollow and insufficient. My challenges certainly aren't invisible to me—they're constant. But they don’t always show in the ways that attract accommodation. And I know that for many people, diagnosis isn’t just a philosophical dilemma—it’s a barrier to housing, employment, healthcare, and safety. I haven’t forgotten that. I carry it with me when I write and critique. When I choose not to pursue the diagnosis myself, even as I know how much weight it still carries.
And there’s something else, too. The question of what it means to put this aspect of my identity on record. A formal diagnosis doesn’t just sit in a file. It is accessible in ways I can’t control. It becomes searchable, traceable, something that can be used by people who don’t see me as a person at all. And in a country where people like Trump and RFK Jr. wield power with zero regard for intellectual, logical, or moral integrity, that’s not something I can ignore. How can I trust those who’ve openly questioned the legitimacy of neurodivergent people, who push eugenic-adjacent narratives, who treat disability like a threat or a flaw or a political inconvenience? A diagnosis in that kind of world doesn’t protect me—it exposes me. It gives them language and leverage to decide what I should be allowed to do, or where I’m allowed to go, or whether I count as fully autonomous at all. That’s not hypothetical. That’s the risk.
I still haven’t decided. But I know that whatever I choose, it won’t be because I’m unsure of who I am. It’ll be because I’m trying to navigate a world that still demands documentation to believe what’s already self-evident.
I’m not officially diagnosed. But I am autistic. And everything I write and build—everything I’m trying to create—it comes from and through that core.
And not just to prove something. It’s because I want to help. Because I’ve spent so much of my life trying to make sense of things that didn’t make sense until someone finally said something that landed. And if anything I’ve written or built or said can be that for someone else—can give them even a little more footing, a little more clarity, a little more breathing room—then that’s the point. That’s the whole point. It’s not just about autism. It’s about all of us, and how we’re supposed to show up for each other when we’re struggling or confused or uncomfortable or afraid. It’s about learning to approach difference without immediately needing to explain it away. It’s about slowing down long enough to let someone else’s truth settle before deciding whether or not it makes sense to you.
I’m not always great at that. I get impatient and protective. I’ve spent so long being misread that sometimes I brace too early or push too hard. I know that. But I’m trying. I want to be better at this. I want to reach more people and help build a culture where empathy isn’t something you have to earn with credentials or presentation—where people are given the space to be real before they’re expected to be anything else.
So no, I’m not writing this to dismiss anyone who still needs validation—I need it too. I’m writing this because I know what it feels like to carry a truth you didn’t ask for in a world that refuses to see it until someone else confirms it for you. And I just want to say—if you feel that, if you’re in that place, if you’re still navigating the tension between what you know and what the world demands to believe it: you’re not alone.
You don’t need to be certified to be real or labeled to be valid.
And your voice matters, even before it’s heard. ∞
At the time, I was very happy to get my diagnosis. It brought what felt lie clarity and all that. But I knew almost nothing about autism. My therapist, she knew her stuff and wouldn't have told me she thought I was on spectrum if she wasn't sure. And after a little reading, it was indeed clear I was autistic.
The eval covered a lot of stuff, but the ASD part of it was, in retrospect, a rubber stamp of sorts. There were some other things it uncovered and confirmed or disconfirmed, which was nice, so I don't regret doing it. It just didn't make a difference for me autistically.
These days, I'm pretty ambivalent about getting tested. The tests, as we all know, check for the so-called deficits, but that's like testing for boiling water by looking for condensation on the window: it'll only show up in the right circumstances. The 'deficits' are only, well, deficits if society's configured certain ways. If you need the official stamp to access support stuff, you should get tested, but otherwise... eh. Trust yourself and/or whoever helped you figure it out.
What I want to see is more rounded tests. Ones that come at it from a more neutral (at least) perspective and test for the presence of positives. I think we'll get that soon-ish; things are moving in the right direction for it at least.
Very clear bit of writing Michael, thank you. I'm in the same boat, waiting for over two years for a diagnosis on the UK NHS, but actually more and more thinking that it's irrelevant. I know I'm autistic, I know because of the evidence, the interests, the shutdowns, the overwhelm, the looping thinking patterns, the sensitivity to sensory stimulation, all of that and more. But for some reason I am still waiting for that meeting with an "expert" who will give that stamp of official recognition. It won't bring me any support, which I could really do with. It won't make any material difference to me, but I will still submit to the process once the appointment is made. And I think it's because for some reason I have a need for a parent-like figure to validate me. Probably a need which is there is all sorts of areas of my life, and something I plan to explore and wonder why it is there and whether it is helpful. So thanks again for expressing all that, it helps a lot to know there is someone else going through some of what I am experiencing.