I have a formal autism diagnosis. I went through the assessment process, paid what it cost, sat through the questions that felt like being poked at by someone who had read about you but never actually talked to you, and got the paperwork at the end of it. It lives in a folder somewhere. I almost never refer to it.
I’m telling you this upfront because what I’m about to say tends to get dismissed when people don’t know where the speaker is standing. So. I have the paper. I’m not defending something because I need to.
I’m defending it because it’s right.
Autism self-diagnosis is valid. And the community’s obsession with policing it is doing real damage to people who are already getting it from every other direction.
There. That’s the post. But stay with me because I want to actually make the case instead of just saying the thing and walking away.
The assessment process is not neutral, it’s not accessible, and it was not built for most of us
Let me describe the formal autism diagnostic process for adults.
First you need to find a clinician who actually knows how to assess adults, because most of them were trained on children and the overlap is significant but not complete. Then you need that clinician to have availability, because wait times for adult autism assessments range from several months to well over a year in most areas. You need to be able to pay for it, because a comprehensive adult autism assessment costs anywhere from $1,500 to $3,000 depending on where you are, and most insurance either doesn’t cover it or makes you fight for it in ways that require energy most people in the middle of figuring out their neurology don’t have.
Then — and this is the part that should make everyone uncomfortable — you need to perform your autism correctly enough for a clinician who probably trained on criteria built around white boys in the 1980s to recognize it in your particular body, your particular presentation, your particular cultural context.
Clinicians are gatekeeping autism diagnoses, especially for adults — particularly women. Some seem to think their job is to decide if someone is “autistic enough” to warrant a diagnosis, demanding that clients jump through hoops to prove themselves.
If you’re a woman. You’re Black or Brown. If you’ve been masking since childhood and you present in a way that reads as “too social” to a clinician who has a specific picture of autism in their head. You’re trans or nonbinary. If you’re poor. You live somewhere rural. If you have Medicaid and the only providers who take it have a two-year wait list.
The formal diagnostic system is not a neutral arbiter of who is autistic. The DSM-V criteria for autism was written with little white boys in mind, and nearly all autism-related research is still being done by neurotypical researchers focused on little white boys. Researchers seem to forget that autistic children grow into adults, and there exist autistic people who are not male and not white.
So when we say “you need a formal diagnosis to call yourself autistic,” what we’re actually saying is: you need to be able to afford it, access it, navigate it, and pass it — in a system that was not designed for you, administered by people who may not recognize you, using criteria that wasn’t built with you in mind.
And if you can’t do all of that: you don’t count.
That’s the position. Say it out loud and see how it sounds.
What self-diagnosis actually involves
Here is what I have watched people who self-identify as autistic go through before they get there.
They spend months — often years — consuming every piece of information they can find about autism. Not just the “10 Signs You Might Be Autistic” listicle stuff, but the deep reading. The research papers, the first-person accounts from actually autistic people, the community forums, the books written by autistic people about autistic experience. They do this because something clicked, and once it clicked they couldn’t un-click it, and they are trying to understand the thing that just explained their entire life to them.
They cross-reference compulsively, they notice every way the description fits and every way it doesn’t, they sit with the imposter syndrome that says maybe they’re just looking for an excuse, they read about masking and recognize themselves in it so precisely that it’s almost embarrassing, and they find out there are other people who felt exactly the way they felt in exactly the rooms they struggled in and suddenly they’re not alone anymore.
The University of Washington Autism Center — an actual clinical institution — says this: “If you have carefully researched the topic and strongly resonate with the experience of the autistic community, you are probably autistic.” They say inaccurate self-identification of autism appears to be uncommon.
People are not self-diagnosing on a whim. They are arriving at a conclusion after the kind of careful sustained inquiry that the formal assessment process, in theory, is supposed to support. The difference is they couldn’t access the formal process — or the formal process couldn’t recognize them.
The gatekeeping is coming from inside the house
I want to name the specific thing that I find most painful about this conversation, because it’s not the clinicians. The clinicians are a problem, yes. But the clinicians aren’t in our community spaces saying “you’re not really autistic.”
Sometimes autistic people are.
In spaces for autistic adults, the topic of self-diagnosis sometimes creates controversy. Sometimes formally diagnosed autistic people lash out and question the legitimacy of self-diagnosed autistics, helping to maintain and enforce a status quo that allistic people created for us. When we do this, we’re letting outsiders define us. We’re admitting that neurotypical people know us better than we know ourselves.
There is a specific irony here that I cannot let go of. We are a community that has spent decades arguing that the people best positioned to understand autism are autistic people. That lived experience is irreplaceable. That nothing about us without us is the whole point.
And then a self-diagnosed person shows up and some of us say: not you. You need the paper first. The paper that costs $2,000 and requires you to perform correctly for a clinician who may not know what they’re looking at.
Having people who aren’t even autistic tell me I’m not autistic enough to talk about autism is next level. Yes. And having autistic people do it to other autistic people is its own specific kind of wound.
The practical argument that should settle this
Let’s set aside the philosophical debate for a second and just look at what actually happens when someone who is autistic — formally diagnosed or not — finds community and information and language for their experience.
For many, the best part of learning they’re autistic is understanding themselves better and finding a like-minded community. This can be pursued without a formal diagnosis.
They understand why certain environments are so hard, they stop blaming themselves for the things that were never character flaws, they find strategies that actually work for their nervous system, they find people who get it without needing an explanation, and they start to unmask and discover who they actually are.
All of that is available to self-diagnosed autistic people. All of it. Right now. Without the paper.
Conversely, given how systematically psychiatry excludes autistics who are Black, brown, poor, gay, trans, or otherwise marginalized, we cannot as a community rely on psychiatry to define who we are.
The diagnostic system has excluded exactly the people who most need community and understanding. And then some of us want to honor that exclusion by excluding them again on the same grounds.
I’m not doing that. I won’t do that.
What I actually believe
A formal diagnosis opens specific doors — certain workplace accommodations, some benefits, specific programs. If those doors matter to you and the process is accessible to you, pursue it. That’s real and I’m not dismissing it.
But formal diagnosis is not the price of admission to the autistic community. It is not the credential required to call yourself autistic. It is not the thing that makes your experience real.
Your experience makes your experience real.
Autistic people own the right to define who we are. Why gatekeep who is deserving of community and help? The community gets stronger with more people in it who understand themselves and each other. The advocacy gets louder. The research gets more representative. The resources stretch further. The sense of not being alone gets more available to more people who have been alone with this for too long.
That is what we’re protecting when we defend self-diagnosis. Not a loophole. A community.
Come in. You don’t need the paper to belong here. 💙
And while you’re here: If you’re in the process of figuring yourself out — with or without a formal diagnosis — the Autistic Swag collection exists for exactly that moment. Because sometimes finding the language for who you are deserves something you can actually hold. Hats, shirts, stickers — things that say I know who I am now out loud when you’re still figuring out how to say it in words.
