Humanizing the DSM Diagnosis for Autism12 min read

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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 APA’s Diagnostic and Statistical Manual (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 my 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!

Too, the diagnostic criteria is constantly being revised.

I want to take a moment to re-frame these clinical behavioral observations through the lens of someone who has lived with autism for his whole life.  But, I also want to be clear that I cannot claim to– nor would I want to– speak for all other autistic folk.  We come in all shapes and sizes, and we’re each on our own journey.  What I hope I’ve captured here is a high-level view of what the autistic experience feels like from the inside.  Just know that my view may not be yours.

On Diagnosis

I want to be clear that I am 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.

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.

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.

I’m trying to collect resources and form a community in this vein over at /r/AutismTranslated, and if you think you’d benefit from such a community, please come join us!

On Disability

You probably think of autism as a disability, and if you don’t feel disabled, you’ll rule out autism before you’ve even build up an understanding of what it is and how it works.

Look, a lot of autistic people have severe 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 experience when I say this:

Autism is not itself a disability.

Autism is a set of traits that cause differences in how a person interacts with the world.  If one or more of these traits presents strongly enough, then it can be disabling, but a lot of people are walking around with autism that isn’t easily recognized by outsiders.  These are the ones who so often go undiagnosed.

The really important thing to understand is that you can be autistic without being disabled.  You can be autistic and severely disabled.  You can be autistic and have high support needs for years, and then manage to transcend that state 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 disability.

When you’ve met one autistic person, as the saying goes, you’ve met one autistic person.

So, what does autism look like?  According to the medical community and the DSM-V:

Diagnostic Criteria

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 considered a deficit.  But really what this is saying is: autistic people model ideas in ways for which our culture has no language nor 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-is-true, what-else-might-be-true?  It would lead me to insights and understandings I could rarely make understood.

Science class lectures would remind me of novels I was reading would remind me of a historical documentary I’d seen would remind me of some geographical fact, and 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 that I don’t have even a basic understanding of what’s going on around me; however, I’m really 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 were even worth trying to share– even with my best friends and family.  I eventually stopped bothering for the most part.  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 performs neurotypicality.  It can be used consciously as a powerful tool for getting the world to accept you; however, for most autistics 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.

And the consequences were disastrous for me.

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 nothing like how I would 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.  Special interests might be the Civil War, stamp collecting, social justice, 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.  Stimming can be fidgeting restlessly, cracking knuckles, teeth-grinding, walking in circles while thinking, bouncing your knee when sitting, twirling a lock of hair, or even just focusing on a phone game for a while as your brain refreshes.

Stimming 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.  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.

C.  Symptoms must be present in the early developmental period

This is a doozy and 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 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 different.  Sometimes, though, neurotypical parents are reluctant to admit any differences in their children and may reject or downplay any atypical development.

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 criterion entirely, and many of us succeed wildly!  But the damage caused by masking our whole lives is nowhere on this list, see?  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 g-d, it must mean that you’re not playing the game correctly!  THEY KNOW YOU’RE WEIRD!  PANIC ATTACK!!!  AAHHHH!
  • 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?
  • Autistic Burnout!  What a treat!  This is 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, makes up a personality based on them, and then consciously performs that personality, right?  It’s not true!  This is seriously taxing!
  • 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.  You end up with this trail of broken relationships behind you, each time certain you’ll get it right next time; however, you’re getting older and none of this is getting any easier!
  • regular meltdowns or shutdowns, which you probably don’t understand and feel shame about.  Many of us just think we’ve got issues with anger management or depression or listlessness without realizing that it’s actually our bodies shutting down as a response to unmet needs and ongoing low-level trauma.
  • 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.  The friend asked the doctors, “My real expressions or my masking ones?”  The doctors had no idea what my friend was talking about.  This is messed up, right?

E.  These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay</h4

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 a difference in how our brains are wired.  There is nothing wrong with this– we are just different.  What this diagnostic criteria is really saying is this: if something seems wrong, and if you’ve ruled out all sorts of other shit, maybe you should seriously consider looking at autism as an explanation.

Other Stuff Doctors Don’t Seem To Know

    • Autistic people are often face blind and/or have aphantasia (cannot generate internal visual images in the “mind’s eye”)
    • Autistic people often struggle with IBS and other gastrointestinal issues, allergies, or autoimmune conditions
    • Autistic people often have severe depression and anxiety, which is nearly inevitable 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
    • 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.

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 those of us who are 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.

Reach Out!

A version of this essay is cross-posted as a sticky post on the /r/autismTranslated subreddit so as to gather additional insight from other autistic people.  If you’d like to read more perspectives, I encourage you to read the comments there– and if you’ve got things to contribute, please feel free to add your comments here or on Reddit.  Let’s have a conversation.

Science is really in the infancy understanding of neurodiversity.  Autistic people have, since the advent of the internet, formed communities of passionate, dedicated individuals deeply committed to understanding themselves and each other.  For the first time it’s becoming clear that autistic people know more about autism than doctors, and we’re here for each other.  It’s so liberating to finally realize what’s going on, and to start to ‘find the others,’ as Timothy Leary wrote.

So I’m asking you: help me to find the others.  A lot of us are out there in the world feeling like something’s wrong but with no way to understand what it is.  It’s an invisible diaspora, each alone in a crowd from birth to death, not knowing that the others are there, too.  With your help we can put an end to this dark age and bring our people out from the cold and into the Sunlight.

5 thoughts

  1. Self-diagnosed, because if you’re in your 60s when you first learn about autism and you’ve managed your life on your own, who needs some “expert” to tell you about yourself?  Will be looking into the reddit group and maybe joining.  I have a recently-started autism blog, plus another blog to keep up, so time and energy are getting a bit thin.

  2. Great article!  I’m recently self-diagnosed myself, and your descriptions of what it’s like being autistic has pretty much been my experience as well; totally unlike the clinical crap that keeps getting passed off as facts.  And thank you for including the blurb about struggling in relationships, as that’s the first I’ve seen anyone address that, and it’s been my experience as well.  I’ll definitely be joining your group!

  3. Thanks!  Love this article.  Our daughter is a beautiful little 6y old being and through loving her my hubby and I realize we’re all “on the spectrum” and it has been SO VERY amazingly helpful to know this and help her learn to live a life of not having to hide or change who she is to fit a society that can be SO overwhelming when you’re trying to “fit in” to that world.  So this article is a great tool to encourage us all to live our authentic lives together!

  4. I was ‘self diagnosed’, in that I felt quite strongly I was autistic, and that was confirmed by a formal assessment.  So much of what you spoke of was very much a snapshot into my own life.  I was lucky that I sought assessment following a major burnout/depressive episode.  Within 7 months, I saw the specialist team and aged 22, I had the piece of paper to prove it. 

    I spent years miserable and feeling as if I was wrong.  I knew from an early age that the way in which my mind worked wasn’t like those around me.  Of course, I also questioned on how could I know that?  I spent most of my life so far trying to be like other people.  So this was a very thoughtful article and I really enjoyed it.

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