What if you didn't need to be sure?

I recently saw a fellow therapist as a question in a professional group: "Can someone have PDA without being autistic?" I understood the question. Clinicians are trained to sort, categorize, and differentiate. We want to get things right, and our clients are often counting on us to do so with stakes that feel really high. But my reaction wasn't really about PDA. It was about the assumption hidden underneath the question that there is a final authority capable of telling us where one neurotype ends and another begins.

I wondered if there might be a more interesting question than "Is PDA always a part of autism?" What if we asked instead, "What would be gained by proving it one way or another?"

We made all this stuff up

Before you recoil, hold on...I don't mean that autism, ADHD, or PDA are imaginary. I mean that diagnostic categories, whether "officially" a part of the DSM or not, are human attempts to describe patterns in human experiences. They are maps, not the territory itself. And maps change.

Homosexuality was once a psychiatric disorder. Asperger's syndrome disappeared from the DSM when humans doing the mapping realized that the Nazi affiliation was harming autistic people. PTSD didn't always exist. PDA itself remains controversial and isn't universally recognized...for now. It probably will be eventually, and when that day comes, it's likely people who identify as PDAers will rejoice in finally being seen. But by whom? And why does it matter so much?

Even the boundaries between autism, ADHD, OCD, trauma, personality, giftedness, and countless other categories have shifted repeatedly. I subscribe to multiple Substacks and Patreons by clinicians who have created their own charts to better synthesize differential diagnosis (i.e. answer the question "Is this trait coming from this diagnosis, or that one?") to get people the most accurate answer possible, as well as rewritten diagnostic criteria that isn't deficit-based like what we've got in the pathology model. The fact that we have to do all of that to make it make sense for specific contexts, specific human variations, points to the inherent flexibility of all the criteria to be interpreted in so many different ways. And that's not a bad thing; it means people who have been invisibilized get to finally say, "Oh, that's me!" That can be so powerful. But the fact that the so-called bible of mental health has limitations, needs to be rewritten and that many people can do it in many ways speaks to its malleability and begs the question, "Why are we trying to fit people into these categories we made up in the first place?"

None of this means the experiences themselves aren't real. It means our frameworks are human creations. Sometimes useful and even life-changing ones, but human creations nonetheless.

The pull of essentialism

Essentialism is the belief that categories have a fixed, underlying essence that makes someone truly a member or not a member, and that our job is to discover that essence. Essentialism isn't unique to mental health. People do it all the time because we like certainty and clear boundaries that make us feel safe by telling us what things really are.

The mental health field just reinforces this impulse. We talk about "getting the diagnosis right" as though we have a blood test for it. Even many practitioners who reject pathologizing frameworks still promise clients they can determine whether they "really" meet criteria using more affirming approaches. Which may be helpful. But we usually stop short of asking something more radical: What if understanding yourself doesn't always require proving that you possess the essence of a category?

When someone asks, "Can someone have PDA without being autistic?" they may be asking a taxonomy question, but they may also be asking:

• Am I allowed to understand myself this way?

• Am I allowed to use this language?

• Am I allowed to belong here?

• Am I making this up?

• Am I enough?

Those aren't really questions about diagnostic accuracy as much as they are about permission. Many of us have very good reasons to be seeking that permission. If you've spent your life being misunderstood, gaslit, dismissed, or told that your experiences don't count, it makes sense to want someone with expertise to say, "Yes, you're real." I don't judge that impulse; I have had that impulse.

A few years ago, after having self-identified my autism but still unconvinced that I could stop there and be valid in the identity, I sat on the other end of a phone consultation with a neurodiversity-affirming autism and ADHD psychologist's office trying to answer the question, "Is this worth thousands of dollars?" Often in comments sections online, I see people rebut bad-faith critics of self-diagnosis with "Diagnosis isn't accessible to everyone! The waitlists are long! It's so expensive, and insurance doesn't like to cover it!" All true. All barriers that I wish weren't there. And yet here I was having transcended said barriers and still feeling something was "off" about handing over my power to a professional to tell me whether or not I was "right." Ultimately, the psychologist I spoke with was a rare gem who, rather than push her services on me, recommended that I reflect on my reason for pursuing the assessment before making a commitment because from where she stood, if all I wanted was a "yes" or "no," if I could independently self-assess all my autistic traits once more and reach a "certain enough" place, I could just have what I was seeking for free.

Having chosen not to follow through, to treat my self-assessment as enough, I continue to wonder whether external certainty can ever fully resolve an internal fear that we're somehow wrong.

Labels do different jobs

I find labels deeply valuable, and I use them often. I put them on this website. I share them with clients, with family and friends, with my own providers, depending on the context. Labels can help us make sense of ourselves, connect us with community, provide language for experiences we previously could not explain, offer relief and self-compassion, reduce shame, help loved ones understand us, guide accommodations and support, and facilitate access to services. Those are real benefits.

But labels can also become something we feel we, and others, have to earn, as though we're applying for citizenship in our own experience. As though we need enough suffering, enough impairment, enough evidence, enough traits, or enough expert approval before we're allowed to say, "This resonates." That's a heavy burden to place on ourselves.

Diagnosis ≠ identity

Part of the confusion, I think, is that we often ask diagnoses to do jobs they were never designed to do because their designers subscribed to the medical model. They are part of that model by their very nature, no matter how we dress them up in strengths-based language. Diagnoses help with research, communication, insurance reimbursement, accommodations, and all these tangible things, sure, but social identity labels do something different: they help us understand ourselves. They help us find each other. They give us language. Those functions do overlap, but they aren't identical.

Separating them from each other breaks down the norm of gatekeeping the label. It's the reason I know I'm autistic without a psychologist signing off on it. But it's scary to do so because social identities can't be policed. If anyone can say they're autistic, the fearmongerers insist, then autism stops meaning anything at all and it waters down resources available to those who are "really" (read: formally diagnosed) autistic. A hierarchy of "diagnosis" as superior to "social identity" promises to prevent this. It doesn't. That's because it was never a problem; the two aren't in competition with each other.

The neurodiversity paradigm doesn't deny difference or disability or support needs. It does invite us to think beyond a medical framework. If neurodivergence is more than pathology, then perhaps labels can function not only as diagnoses but also as identities and communities. When I realized I was asexual, for instance, no psychiatrist evaluated me. Nobody administered a queerness inventory. Nobody told me whether I qualified. Sure, some people questioned whether I just hadn't found the right person yet, but part of my process was learning that that's a common hardship the community faces, and I wrote it off as feedback that wasn't relevant. I explored, I resonated, I learned, and I reflected. Eventually I concluded, "You know what? I'm ace!" I was the only person who could declare that process complete. Of course, the process of gender and sexual orientation exploration isn't so clean and easy for everyone; there's privilege in my experience, but broadly speaking, we are taught to be so much less trusting of ourselves when it comes to neurodivergence. Even though the process of identifying and owning that identity can look nearly identical if we let it.

Affirming assessments still place someone else in charge

Don't misunderstand me; I'm not anti-diagnosis or anti-assessment. I don't think people who want certainty are doing anything wrong. I explore those charts and lists from Substack with my clients all the time, especially those who hold other neurodivergent identities besides the one they're considering may fit because talking through something so complicated with a sounding board who speaks the same language can be a crucial part of arriving at a good-enough conclusion. Assessments can provide tremendous relief. They can open doors and validate experiences that have gone unnamed for decades. Often times people who are content with their self-ascribed label and don't even want an assessment, perhaps even fear an assessment invalidating their self-understanding, are required to get one as a condition of receiving some kind of official accommodation. When this happens, the work that neurodiversity affirming assessors do is absolutely vital for preserving emotional safety.

But even these kinds of assessments can sometimes preserve an underlying assumption that you'll know who you are once someone else tells you. Maybe understanding yourself and obtaining a diagnosis are two separate processes entirely. Maybe one can support the other without replacing it.

What if "I resonate with this" could be enough?

Maybe someone will eventually conclude they're autistic; maybe they'll decide they're not. Maybe they'll discover that trauma, OCD, ADHD, chronic illness, giftedness, or something else explains their experiences better. Maybe they'll collect multiple labels. Maybe they'll feel suffocated by labels and decide not to claim any at all, and maybe they'll change their mind again later. They get to. That's what I mean when I say, "You're the expert on yourself." It's more than a cutesy marketing tagline. Professionals who do not defer to your personal experience of yourself over that of a list of diagnostic criteria are simply not in line with the neurodiversity paradigm.

Maybe you'll never know for sure. Would that make the insights you gained along your process of trying it figure it out any less useful? Would it mean you're not allowed to say, "The framework of demand avoidance is something that helps me understand why I feel how I feel and do what I do"? Diagnosis is not a club membership that gets you entrance to the exclusive lounge. It's not meaningless, and accuracy has a lot of value to many of us (some more than others - that's neutral). What if "Looking at my challenges through the lens of autistic inertia helps me find compassion for myself I didn't have before" could get the job done, and you didn't even have to spend thousands of dollars to arrive there?

Human beings are bigger than our categories. If the label helps you to understand yourself, advocate for your needs, and treat yourself better, where is the problem? My own fear and one I hear from most of my clients exploring their neurotype (see Devon Price's "questioning" phase of accepting you're autistic) was of being an imposter, of using my neurotype to excuse my behavior. Then I thought, "Why...do I need an excuse? What is this intrusive, inexcusable behavior that's so out of my control that it's easier to resort to lying about my identity to cover it up than it is to decide to change it? Could it be that the reason it doesn't feel like an option to change it is because it's not meant to be changed...because it's part of who I am...because this neurotype is in fact valid?"

You don't have to pretend you don't want certainty

If you want an assessment, pursue one. You're not ableist for wanting a diagnosis. If you want someone knowledgeable to walk alongside you and offer their perspective, that makes sense! This isn't a call to abandon labels. It's an invitation to loosen our grip on essentialism. There is no secret, hidden, objective essence that defines any neurodivergent identity just wiating to be discovered by the right expert using the right criteria. Certainty is not morally superior to curiosity. External validation isn't the only path to self-understanding, and permission doesn't always have to come from an expert. Sometimes it comes from finally trusting yourself enough to say, "This feels true enough to explore."