Gatekeeping:

It wasn’t that long ago that Autism was characterized by profound disability, that masking was unheard of. There are still many people alive today that rely on these out-dated conceptualizations, that have not been exposed to recent research or discourse. For a long time Autism was thought to be fairly rare, when in fact:

“The prevalence of autism, at around 1.7% of the population, is about the same as the percentage of people with red hair, the percentage of people with green eyes, and slightly higher than the percentage of people with borderline personality disorder (BPD). Autism is more prevalent than bipolar disorder.” - Vance, 2021

Gatekeeping, as far as I can tell, works to: Reduce the amount we use the word ‘autism’ and other neuro-affirming language; Block people from support and accommodation; restrict opportunities to unmask (and therefore heal from the trauma masking causes); take away moments for self-recognition and self-validation (Autistamatic, 2020). I have seen and heard so many examples of autistic or neuro-divergent gatekeeping in the couple of years since I began identifying as someone on the spectrum. In truth, it’s a staggering amount, comparative to hetero-normative or cis-normative ways of speaking and behaving. And not just on social media or in the movies but in person: whenever conversations about neuro-diversity come up out in the world. Even people who try to keep up-to-date and respectful about ways to speak to and about autistics often slip up because we are exposed to so few examples of language that celebrates neuro-diversity. That’s how entrenched this way of thinking is - it’s unavoidable. The only way to educate ourselves is to seek out this information purposefully, preferably from trusted members of the community. 

It isn’t a surprise then that so many people who identify with neuro-diversity and autism do not feel comfortable fully owning these labels. Even when we receive diagnoses from trusted and qualified practitioners we question our own honesty and authenticity. I could come up with endless reasons why, even though I think of myself as autistic and autism explains and validates the majority of my experiences and every assessment tool I’ve come across has confirmed my autism, I’m not really autistic. These are the dangers of internalizing the gatekeeping other people do.

If we take a moment to reframe ‘autism’ as just a word like any other, we can imagine that it’s only function is to be used to communicate an idea (nothing more or less) to someone we want to feel understood by. Looked at this way, it doesn't make sense to place any restrictions on how often a word is used. If I say ‘I am autistic’ or ‘I feel autistic’ or ‘I think about this in an autistic way’ why should that mean anything more than exactly what I’m saying?

Gatekeeping operates on the assumption that when I say ‘I am autistic’ I am completely redefining myself and asking for validation and support. Well, when I say ‘I am sick’, as in with a cold or a chronic condition, I’m not saying I will forever and completely be sick. I’m not saying there will never be another moment that isn’t dictated by my illness. That’s not how that phrase is typically used. But if we argue that the implication of ‘I am autistic’ is forever and complete we get to scare people into saying it less. Identity changes, definitions change, and flexibility is always more useful to us than restriction. But also, if I do say ‘I am autistic’ with the intention of meaning ‘I am forever and completely changed by this’... Why is that a bad thing? Many people on the spectrum are happy to be on the spectrum. And of course autistics are asking for validation and support. Everyone is always asking for validation and support, it’s a basic human need, and one that gets dismissed regularly in our current society. 

Gatekeeping assumes that there is only one way to define autism. That the autistic community is monolithic, that only a very specific kind of person can fit under the autism label (Knopf, 2025). This is not only erroneous, it’s downright offensive. One of the best things about the autism community is how incredibly varied and diverse it is. Diversity should ideally create space for freedom, exploration, experimentation, and bridging gaps (all crucial for healthy identity development), but gatekeeping tries to take all these things away.

“Discussion can’t happen so long as one party feels they have a monopoly on the truth, as gatekeepers so often do.” - Knopf, 2025

In an effort to win the argument gatekeepers often drown out other voices in the community. In fact, gatekeepers will often use other labels, like ‘ignorant’ or ‘ableist’ in order to drive their point home (Knopf, 2025). Nevermind that these words can be even more dangerous than a word like ‘autism’. 

Gatekeeping, unfortunately, has been so deeply absorbed that it often comes up in the autism community, neuro-divergent to neuro-divergent. Which means it isn’t just allistic spaces that feel unsafe (space where masking is more common and there’s a higher risk for criticism, rejection, or even conflict in the absence of masking), it’s autistic spaces as well. When we are accused of using an identifying term wrongly it is a profound invalidation, and a painful denial of our most authentic selves (Knopf, 2025). In this way gatekeeping stops being about protecting autistic spaces (which it has always pretended to do) and instead becomes a weapon against autistics. This is particularly obvious online and in social media.

Identity vs. Diagnosis

I know we like to think of these things in categorical ways: fitting people into boxes. But people are contradictory and fluid and complex by nature. The labels we attach to them are always changing and are often indiscrete: many neuro-typicals have neuro-diverse characteristics, and many autistics have neuro-typical ways of doing things. I know people with many autistic characteristics, enough to be noticeable to their loved ones and potentially receive a diagnosis, but are perfectly happy to think of themselves as neuro-typical. So it doesn’t make much sense to be super strict with things that are unavoidably flexible. But identity is a powerful concept - it often has a permanent impact. 

Diagnosis plays an important function: we need some kind of baseline for definition. But what started out as a clinical tool has morphed into a cultural identity. This isn’t a bad thing: what happens outside the therapy office or assessment room will always be more important than what happens inside them. And adhering too strongly to the rules the DSM provides us can be dangerous. Denying identity can be traumatic and painful, validating identity can be profoundly healing. So when faced with the question: what’s more important, diagnosis or identity? I have to go with the latter. The system loves diagnosis, culture and politics will use the bureaucracy of diagnosis to make points and manipulate thinking. But when we’re talking about the actual people and their lived experience, diagnosis achieves very little, and identity achieves a hell of a lot. At the end of the day, the only person who has enough information to be able to tell, significantly, whether you’re autistic, is you. (I have written before about how the assessment procedure is unreliable and often inaccessible - many people on the spectrum have low incomes, and years of masking can skew the results of assessments.)

“Autism is not a set of behaviours detailed in a some expensive diagnostic manual. It is a way of sensing the world, of thinking, of processing information… People giving out the diagnosis can only see the behaviours but what we talk about online is how we think.” - Autistamatic, 2020

There is an overlap between identity and diagnosis: when the two agree or when someone has utilized ‘self-diagnosis’. ‘Self-diagnosis is valid’ is an increasingly common phrase in the community. It means that a professional diagnosis isn’t always necessary, that self-identification is enough for us, and should be enough for everyone else. Not everyone agrees with this kind of thinking, some take issues with the term ‘self-diagnosis’ itself (as diagnosis, by definition, requires a qualified assessment) but the general consensus is becoming much more open to the different ways people come into or grow into their identities.

Is it possible to create space in our culture where ‘autism’ doesn’t always mean ‘diagnosis’ but often just means ‘personal experience’? I think yes. In fact, I think that there are innumerable benefits (societally and for mental health) for working on a more autonomous approach to language in general.

At the end of the day, identity is all about instinct. What resonates? What makes you feel seen and whole? What makes life easier? Words can be so powerful, so if we aren’t using them for good, then maybe we shouldn’t be using them at all. Unlearning gatekeeping means challenging the way we define these things and the importance we put on being ‘correct’. It also means learning to trust your own gut when it tells you: ‘this is me.’

Sources

Autistamatic. “Autism Self Diagnosis & Gatekeeping… Autism & Society:” Youtube. October 21st, 2020. https://www.youtube.com/watch?v=wOAPmkPF048

Knopf, E. (2025) Gatekeeping actually makes the neurodivergent community less of a safe place. essy knopf. https://www.essyknopf.com/autism-adhd-community-gatekeeping/

Lowry, M. Autistic Trauma and Internalized Ableism. Matt Lowry LPP: https://www.mattlowrylpp.com/blog/autistic-trauma-and-internalized-ableism

Vance, 2021. The Gatekeeping of Diagnostic Dinosaurs: Autism, neurophobia, confirmation bias, and internalized ableism. The Autism Spectrum According to Autistic People. https://neuroclastic.com/the-gatekeeping-of-diagnostic-dinosaurs-autism-neurophobia-confirmation-bias-and-internalized-ableism/