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Understanding Autistic Identity Trauma

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Humanizing the DSM's Definition of Autism

What if Autism were defined in a relatable way?

If you've spent any time wondering if you might be Autistic, the first thing you probably did was examine the

diagnostic criteria⁠

from the DSM, right? But when you read them they probably sounded really alien. "Oh," you thought. "That's not me!"

The thing to remember is that these criteria were developed through observation of the behavior of Autistic children, many of whom had suffered extensive trauma and had no clear means by which to express their internal subjective realities. As a result, the DSM today relies exclusively on simplistic behavioral observations to provide diagnosis for a condition that from a subjective perspective is characterized almost entirely by a rich and nuanced inner life.

What on earth could a person who only observed me know about me? About the deep rabbit holes that occupy my attention, about the passion for disambiguation and justice, about how the only thing keeping me from fidgeting is that nobody is asking me not to fidget? Do you see how arbitrary this is? It would almost be funny if the stakes weren't so high!

Anyway, I wanted to take a moment to reframe these clinical behavioral observations through the lens of someone who has lived with autism for his whole life. I can't speak for everyone, but what I can do is attempt to translate these diagnostic criteria into a more relatable frame.

(A variation of this essay was first published on

/r/AutismTranslated⁠

, and was cross-published to

Neuroclastic⁠

. This version that you’re reading now is the canonical up-to-date version that is maintained over time.)

A Note on Diagnosis

I want to be clear that when I first wrote this I was self-diagnosed, and I believe that Autistic self-diagnosis is completely valid. The autistic experience is multifaceted and varied– no two of us are exactly alike, and we all seem to recognize each other much more easily than doctors seem to be able to. Though my self diagnosis was eventually confirmed via neuropsych evaluation, not everyone has that privilege.

That is in part because doctors are looking at clinical criteria and applying a reductive behaviorist lens to a nuanced, subjective experience, and they often get it wrong. As you’ll see below when we reframe their diagnostic criteria, they’re filing off all of the rough edges to standardize on behavioral observation — but autism exists in those rough edges! It’s literally ABOUT the ways that we don’t fit!

That said, this document is not a diagnostic checklist. Reading this article and seeing yourself reflected back in it is not a diagnosis. However, it may be an indicator that further research is warranted and that you should do some more reading.

In particular, you should reach out and speak with other Autistic adults.

And I want to reiterate: self-diagnosis is valid. Many of us feel that being Autistic is more analogous to being gay than it is to being sick. For more on this perspective check out

On Autistic Self-Diagnosis⁠

and

Neurodivergence as Queerness⁠

, two excellent guest essays hosted on this site.

A Note on Disability

You probably think of autism as a disability - and you probably think of disability as something that happens to other people. Then if you don't feel disabled, you'll rule autism out before you even build up an understanding of what it is and how it works.

Look: a lot of Autistic people have severe, obvious disabilities. Many need long-term care over their entire lives. Please understand that I am in no way trying to undermine the validity of their experiences when I say this:

Autism is not itself a disability - but being Autistic in a neurotypical society is always disabling.

Autism is a set of traits that cause differences in how the person interacts with the world. If one or more of these traits present strongly enough, then conflict with social norms and individual expectations can, and often does, emerge.

But a lot of people are walking around with Autistic traits that aren't strong enough to lead to identifiable disability - and these are the folks who so often go undiagnosed. Here’s the thing: when you’re Autistic, you’ve been Autistic since birth and you’ll always be Autistic, and that means that you are experiencing a disabled life. You just don’t know it, which means you’re playing the game on hard mode.

The really important thing to understand is that you can be Autistic without feeling very disabled at all. You can be Autistic and severely disabled. You can be Autistic and have high support needs for years, and then manage to develop some supports and learn some coping skills and lead an otherwise “normal” life. You can be Autistic and brilliant and successful and then find yourself struggling more and more for reasons you don't understand, eventually leading to increased impairment. When you've met one Autistic person, as the saying goes, you've met one Autistic person.

Everyone has support needs, but society is only set up to meet the support needs of a select few. The more your needs are met, the less obviously disabled you are, even to yourself. But what that means is that your sense of your own disability is unstable — it’s predicated on the external supports you’re able to gather, even if you don’t realize it. Many undiagnosed Autistic people don’t realize how disabled they are until they face a major life change and suddenly find themselves unable to function in shockingly basic ways.

The DSM’s Autism Diagnostic Criteria, Humanized

So, what does autism look like to doctors? Something like this, and it’s no wonder that so many undiagnosed Autistic people read this stuff and then bounce off of it!

A. Persistent deficits in social communication and social interaction across multiple contexts

So, a lot of Autistic people have a hard time expressing their thoughts in a way that will allow them to be understood by the neurotypical people around them. Because most of society is framed in neurotypical terms, this is generally modeled as a deficit. But really what this is saying is: Autistic people model ideas in ways that our culture has no language for, and no conventions around communicating.

As a kid, I had an incredibly rich imagination and loved to follow my thoughts wherever they led me. This would often manifest as a long, on-going game of, “well if this I true, what else might be true?” It would lead me to insights and understandings I could rarely make others understand. Science class lectures would remind me of novels I was reading, which would remind me of a historical documentary I'd seen, which would remind me of some geographical fact. I'd be sitting there in science class trying to talk about why "Force = Mass * Acceleration" is making me thing about the strait of Gibraltar and getting really frustrated that nobody could follow the leaps I had made to connect A to B to C to D to E, you know?

Or: I'm often able to model complex systems in my head dynamically. This means that I think in very relational terms. The truth of X is predicated on the current relationship between Y and Z. If someone asks me, is X true? My answer has to be something like, "It depends!" This makes it seem to some people like I just don't have even a basic understanding of what's going on around me - but really, I'm just accounting for way, way more variables than they are.

Growing up undiagnosed meant that I had to learn, painfully, over the years, which of my thoughts was even worth trying to share - even with my best friends, loved ones, etc. I eventually stopped bothering, mostly - do you know how traumatizing it is to have every attempt to express yourself met with blank stares?

Do you know about masking? That's the term for when an Autistic person acts as if they were neurotypical. It can be used consciously as a powerful tool for getting the world to accept you, but in my case - and in many other cases - it's done pathologically and compulsively. I masked for 34 years because my “persistent deficits in social communication” meant that I couldn't be understood as myself - so I had to learn to be someone else. The consequences of this can be completely disastrous for mental health!

B. Restricted, repetitive patterns of behavior, interests, or activities

Ah yes! "Restricted, repetitive" sounds so robotic, doesn't it? Look, those words may be accurate but it's never how I would ever choose to describe these behaviors. I've got three pieces of information for you here.

First: Autistic people have what we call 'special interests' - we tend to develop really deep and almost compulsive fascination in some set of ideas. These can remain constant over a lifetime, or they can change regularly. A special interest might be the Civil War, or stamp collecting, or video games, or programming language theory - anything where you can spend time playing with it and just never get bored. A favorite of mine lately has been cellular automata - I've been up until 4am on work nights lately because I really wanted to finish coding a new feature, or exploring a new idea within this domain.

We can be very defensive of our time while pursuing these special interests - they can be a bit compulsive. Once engaged, it's very hard to disengage, even to do something like eat or sleep or spend time with loved ones. And I can see how, from the outside, this may seem like 'restricted, repetitive patterns of behavior' - but to me, it's just really vibing on some idea that's infinitely interesting. Why is that a problem? I love it!

Second: Autistic people 'stim'. This is one of those things that's frequently misunderstood! We've all seen the cliche of a kid flapping his hands, but stimming is a much broader category than just that. It's about finding a sensory input that is stimulating in some way, and then just using it to release energy and self-sooth. This can range from stuff like biting nails and cracking knuckles to fidgeting restlessly, walking in circles while thinking or even just focusing on a phone game for a while as your brain refreshes. It takes all sorts of forms, and while a lot of autistic kids in particular struggle with finding ways to stim that are socially acceptable and not dangerous to themselves many of us ultimately figure out what works for us. It's cool, it's not hurting anyone.

Third: Autistic inertia - look, when I'm doing something I want to keep doing it. If I'm reading, I want to keep reading. If you ask me to stop, I'm going to get really annoyed (and then I'm going to do my best to completely hide that, because it's not considered socially acceptable). But once I've stopped, I don't want to start again. I want to maintain my current state. This is super annoying, sometimes - but also ties into the hyper focus that can be so useful!

Do you see how it’s not only unhelpful but kinda rude to reduce this nuance down to “restricted, repetitive patterns of behavior, interests or activities”?

C. Symptoms must be present in the early developmental period

This is a doozy - and this is why so many autistic adults can simply never get a diagnosis. "You're not autistic, they would have noticed it when you were a kid!" - oh yeah? What about those of us who just figured out how to mask well enough to be undetected?

It is technically true that autism appears in early childhood - but don't expect to have any memories of changing. You're just you. If your parents are still around, you can ask them if you had these issues, but it's also entirely possible that your parents are Autistic too and didn't realize that your behavior was in any way weird. (So many adults get diagnosed only after their kids get diagnosed, it's a whole thing).

D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

Yeah, so look at everything above. If you're different in these ways, then life is just going to be a bit harder for you. But if you learned to mask, many of those difficulties get hidden - you're slowly killing yourself by pretending to be someone else for your whole life, but hey, at least you don't have significant impairment in social, occupational, or other important areas of current functioning, right?

Well, sort of. Masking is directly about avoiding this diagnostic criterium entirely, and many of us succeed wildly! But the damage caused by masking our whole lives is nowhere in this list, right? And that's stuff like:

High sensitivity to rejection, because you've internalized that if you just play the game the right way everyone will like you. If you get rejected, oh my god, it must mean that you're not playing the game correctly! THEY KNOW YOU'RE WEIRD! PANIC ATTACK!!! AAHHHHH! (See

On Rejection Sensitive Dysphoria⁠

A constant low-level background radiation of pure exhaustion, all the time, no matter how you rest, how many vacations you take, etc. You're exhausted because you're spending all of your energy being someone you're not, and you don't even know it. You probably think everyone out there just picks their values and then makes up a personality based on them, and then consciously performs that personality, right? It's not true! This is seriously taxing! (See

On Masking⁠

A deeply fragmented sense of self. If you've pushed down your natural needs, traits and responses for the comfort of everyone around you your whole life, then how will you ever know who you actually are? (See

Unmasking⁠

Alexithymia, or a difficulty naming your own emotions, because you’ve never had your actual self’s emotions validated or affirmed by the people around you. As a result you had to learn emotional processing as an adult. (Haven’t learned it yet? We’re here to help!

On Emotional Processing⁠

Problems in relationships, because you're pretending to be someone you're not and trying to perform that person's needs while ignoring your own real needs. This doesn't work, friends - so you end up with this trail of broken relationships behind you, each time certain you'll get it right next time - but you're getting older and none of this is getting any easier!

It just gets worse and worse and worse with time. The longer you go, the more damage you're doing to yourself.

Anecdotally, a friend went in for an autism assessment and was asked to display different emotions with their face. They asked the doctors: "My real expressions, or my masking ones?" and said the doctors had no idea what they were talking about. This is kinda fucked up, right?

E. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay.

This one is really important. Learning disabilities, developmental disorders and other issues are common in this world, and can often lead to serious struggles - struggles like not being understood, not understanding how to express subjective reality, not knowing how to get needs met.

But autism is not a learning disability. Autism is just a difference in how our brains are wired. About half of Autistic people ARE diagnosed with a co-occurring learning disability, but it’s important to understand that the learning disability is distinct from the autism.

What this diagnostic criteria is really saying, and which should jump out at you, is this: if something seems wrong, and if you've ruled out all sorts of other stuff, maybe you should seriously consider looking at autism as an explanation.

The Stuff That Never Made It Into the DSM

Autistic people are often face blind and/or have aphantasia. (

source⁠

)

Autistic people are deeply motivated by their own values, and are more likely to stick to their values in the face of temptation than neurotypical people are. (

source⁠

)

Autistic people often struggle with IBS and other gastrointestinal issues. (

source⁠

)

Autistic people often have severe depression and anxiety. Which makes sense when you're living in a world that wasn't made for you, and in which you'll face consequences if you ever fail to override your own natural behaviors. (

source⁠

)

Autistic people seem to have a lot of trouble with sleep. Going to bed is hard, falling asleep is hard, waking up is hard - this may just be an 'Autistic inertia' thing, but is commonly enough reported that it's almost its own thing. (

source⁠

)

Many Autistic people have SO MUCH EMPATHY! We have so much that just being in the world can be emotionally traumatizing, and a lot of us (especially undiagnosed!) have to learn to curtail that empathy in order to function. If you think you can't be Autistic because you have empathy, guess what? That whole idea that Autistic people don't have empathy is just straight-up false. (

source⁠

)

Research is only now starting on the relationship between

Neurodiversity and Trauma⁠

So. Much. More.

If you want to learn more about how to think and talk about autism in a way that’s respectful of all of this nuance, check out

How To Talk About Autism Respectfully⁠

Concluding Words

There's nothing wrong with us, we are as we are meant to be. Autism can be a gift. When it's entirely defined as a pathology, though, it's difficult to understand and accept that, and easy to look past it.

Listen: if this essay was interesting to you — if it helped you to reframe how think about what autism is — could you do me a favor? Could you share it?

I know in an age of information economies it’s a big ask. But my mission here is to help as many undiagnosed Autistic people as possible recognize that there’s a way that they can thrive. I can’t do that without your help.

If this essay made you go, “Huh, I didn’t realize that,” then imagine the impact it could have on a single person who is Autistic but doesn’t know it. It’s genuinely life changing, and there are dozens of comments on the original reddit post that testify to that effect.

Help me change some lives by helping me change the narrative.

⁠

Support Us Here are some ways you can help us change lives.⁠

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Courtney (Gummi)

You are amazing. This is life saving work. I am printing this out to mail to someone who cannot access the internet.

d. dblugreen.tumblr.com

thank you so much for sharing your writing! for me,this is so relatable and i’ve shared this with my autistic sister as well.

@maddoodlek8

Probably the best sum-up of the autistic side of my (selfdx #audhd) life. And in a voice that resonates with my lived experience. Every example given chimed and I’ll be passing this link on to anyone who continues to pooh pooh my selfdx because I don’t ‘seem’ autistic enough. It’s been great to get a handle on the exhaustion of being an expert masker, through community sharing on Twitter, and I’m hoping that social media will continue to connect me to hugely useful resources like this site. Looking forward to reading many more articles here. Thank you so much.

mikeoxmall@yahoo.com

wow. im in tears rn ngl. ts gon make me cry more on g ngl. i put that on gang too.

-Mike Oxmall 2024

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A Note on Diagnosis

A Note on Disability

The DSM’s Autism Diagnostic Criteria, Humanized

A. Persistent deficits in social communication and social interaction across multiple contexts

B. Restricted, repetitive patterns of behavior, interests, or activities

C. Symptoms must be present in the early developmental period

D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.