Hey, how's this for autism 'awareness' month: some percentage of you who are reading this tweet are #actuallyAutistic and aren't aware of it. I'm going to post a bunch of questions I wish I had been asked in this context, years ago. This is not diagnosis! But it's instructive.

Do you need a lot of time alone? Even in a relationship or family, even when you really love the other people in your life, even (especially?) when there isn't anything particularly pressing for you to do?

Do loud noises cause you distress? Or background sounds that won't quiet stop? Do you prefer to keep the lights off? Are there foods you can't eat or fabrics you can't wear because the textures just "feel bad" in a way you can't explain?

When you think about interacting with strangers/acquaintances/friends/family, how much effort do you put into being understood? Are you compensating, without realizing it, for the fact that nobody understands you unless you reframe it in terms you've slowly learned they grok?

When you see a complex system, does your brain get excited? Do you just automatically find that your awareness can easily flow through the system, consider its many parts in relation to each other and the whole, etc? Do you understand more than you can say in this context?

Do you struggle with emotions, especially with emotions around other people? Do you sometimes suspect that you're not having the 'right' emotional response to something? Do you get _really fixated_ on things like fairness, or truth, or correctness?

Do you find that there are a small number of people in your life with whom you've connected immediately, powerfully, felt like you've known them all your life? People who can finish your thoughts and then add more, who push you rather than slowing you down? Are these people rare?

When you first entered 'society' (for me it was kindergarten) did you have a sense that everyone else must have somehow already known each other? That they all somehow knew the rules and you didn't, or something? Did you spend 5, 10, 15 years playing catch-up?

Everyone knows autistic people take everything literally, right? Well, sort of. Do you make puns? Do you hear double-meanings in things others say and riff on them? Even to the point of annoying others? Do you compulsively point out ambiguity, even if you've parsed it? Yeah.

Do you find that you have some days where you just can't human? Are you, like, mostly fine because that little voice in your head that says everything is on fire is easy enough to ignore, until it isn't and you spend hours sobbing for reasons that you don't understand?

Many if not most autistic people would answer yes to some subset of these questions. There are others. The saying is when you've met one person with autism you've met one person with autism. "But this isn't a disability!" I hear you say. Well, right!

Look: a lot of people can say yes to a lot of these questions and not be at all disabled, right? And because Autism is often spoken of as a disability in and of itself, anyone who has a ton of autistic traits but is doing fine in life doesn't get diagnosed.

Autism can directly lead to any number of disabilities, 100%! A lot of autistic people need a lot of support. But that's not because they have different traits - it's because they experience one or more of these traits WAY MORE STRONGLY than others. For instance:

Needing a lot of alone time is fine! Needing to be alone all the time is debilitating and paralyzing and a great way to get diagnosed with all sorts of shit. Sensory Processing issues are annoying to me - but there are folks for whom physical touch feels like fire.

Imagine not being able to translate your thoughts into words. Imagine if it's not just hard but literally impossible for you to turn a really meaningful and complex thing you fully understand and care about into a communication to any other being.

Imagine "seeing the system" so completely that you can't really distinguish between where one thing starts and another ends - everything is all part of one enormous system, and your brain is playing in it but how can you even describe that?

Anyway, all of that is to say: autism leads to disability when an autistic trait is so pronounced that you can't reconcile it with your surroundings. When your emotions compel you to self harm, when your systems thinking makes you mute. But not every trait, not all the time.

So many autistic people who've done their own research and compared notes have arrived at the following conclusion: autism is massively under-diagnosed. You only get a diagnosis, usually, when you're disabled. And many of us can hide or ignore disability for years or decades.

That doesn't mean we aren't struggling. That doesn't mean that our brains work the way everyone else's brain works. It just means that as long as we put forward sustained effort every day for our entire lives we can feel more or less normal. And we learn to hate our real selves.

And the truth is that when you spend your life that way you are destroying your mental, emotional and physical health in ways that you don't realize other people aren't. You're not living your own life, you're living someone else's script - and that's why reality feels so weird.

Anyway, I'll stop there. But if this stuff resonated at all, please feel free to hit me up. Check out the #actuallyAutistic and #askingAutistics hashtags. Check out /r/aspergers and /r/autism. Check out theaspergian.com. And reach out! :)

I'm going to add a few items to the end of this thread. I shared this on /r/aspergers and asked for feedback and folks have left a few comments here: reddit.com/r/aspergers/co…

Many autistic people have a couple of subjects that they just cannot get enough of - we call these "special interests". This can be, like, researching the civil war or collecting stamps or being super into video games - anything we can focus on all deeply and never get bored.

When engaging in our special interests we can become oddly defensive of our time. Being pulled away can be really painful and, I guess, annoying? It's like, no, I want to keep thinking about X, I don't WANT to {eat|sleep|sex|social|whatever}|!

Until my mid-20s I would just straight up copy mannerisms, expressions and even values from my friends. I would find the most socially competent person in the room and just practice being them. Masking is about not being your self, because it doesn't work in public.

So when you mask (and women seem to mask more, but that may just be because women in general have to mask all the time in the patriarchy?) you "pass" for normal, and you don't get diagnosed. And then you go decades without realizing you're not who you think you are.

I'm going to leave this thread open, because there are more things to add here. If you are #actuallyAutistic and want me to add something to this hit me up and let's talk about it! If you're not, this information could save a life. RT this thread, please.

Do you know about stimming? Autistic people 'stim'. It just means we derive tremendous comfort from certain kinds of sensory input. Stims are often unique to person. Examples could be: lapping hands, fidgeting, cracking knuckles, biting nails, phone use, exercise - so many!

There are still parents of autistic kids who try to force their kids not to stim. Don't flap your hands/fidget. Sit still. That's weird. You're weird. Stop. But this is natural, happy, comforting behavior that hurts nobody. Stop shaming us for your discomfort, please.

Oh gosh I forgot face blindness! I recognize even my wife by her haircut, outfits, voice, mannerisms, etc. If you were to shave her head and put her in a lineup with no context I _might_ recognize her. But no guarantees.

One funny test to see if you're face blind is to watch Dead Poet's Society and see if you can keep straight which of the sport-coat-wearing uniform-haircut-sporting normatively-behaving vocally-indistinguishable rich white boys is which. ;)

Also related to this I suspect is aphantasia! I can't, generally, form mental images. If I really make an effort I can imagine a static snapshot with a few details, but it starts to fade immediately. Rather I seem to think in terms of like a concept graph - I remember the system.

It's been so weird learning over the past few years how many of my subjective experiences I had been assuming I shared with everyone else, only to realize time and again that I'm actually really different!

I’ve linked a few resources here, someone asked me to include a shout out to reddit.com/r/aspergirls. Intersectionality applies to all of this, and women on the spectrum face unique challenges independently of the difficulties getting diagnosed.

Autistic Inertia is this thing where I often just want to keep on doing what I'm doing. I'm reluctant to start doing things, and once I start I'm reluctant to stop. To an outsider it seems inconsistent - "you don't want to, now you do, which is it?" The state change just sucks!

Okay, going to add a few more common autistic traits. Some of these may not be pleasant to discuss but it's important to paint a larger picture.

Self-Harm: we've talked a bit about how stimming is generally harmless self-soothing behavior. But it can go to extremes - you see autistic kids wearing helmets sometimes because they pound their head against the wall etc to stim. This is really harmful and scary!

I don't do anything like that - but I do pick at my skin, nails and hair when I'm stressed out. I almost always have some bloody wound on a cuticle somewhere because I had to dig out a fragment of toenail that was impossible not to focus on. It's gross, it sucks. But it me!

A lot of autistic people have some form of OCD, which isn't what it looks like on TV. OCD is driven by a desire to be absolutely certain of something. Turning off the lights ten times? They have to be _really_ off. Washing your hands compulsively? They have to be _really_ clean.

But also there are "pure O" OCD's that often go unrecognized because they don't show any outward behavioral patterns. In Pure O, you have some thought you don't like then you talk yourself out of it. Talking yourself out of it gives you dopamine, your body likes that. But...

Then your body has accidentally learned that talking yourself out of that thought was a great way to generate dopamine, so it gives you that thought again. And again and again and again and again and again. And it's really hard to talk about, because these thoughts can be awful!

For me it was 'Gay OCD' - for many years I was worried I was gay. I am not attracted to dudes, but I was raised in a homophobic context and so on some level I internalized that being gay would be awful. And how could I be _sure_ I wasn't? For _years_ I dealt with this.

Turns out that this is common - and it goes both ways. There are gay people who are compulsively worried that they might be straight. It's not based on anything other than brain signals and dopamine patterns. OCD doesn't mean you're autistic - but they are often comorbid.

Finally, let me talk a little bit about differences in communication style. Autistics are often described as lacking empathy, not caring, being 'robotic' etc. None of this is true - it's just that we have different programming around communication.

To us, communication is about sharing information. Someone asks a question, I answer it. I need to know something, I ask. Small talk puzzled me for years - why do this? But for most people, communication has this dual purpose of ALSO sharing emotions.

When someone says "Hey how about that weather? Think it's gonna rain?" to someone else, what they're really saying is: "I value our social bonds and am taking this opportunity to reinforce them." "How was your day?" can mean "I love you." And that's just not obvious to us.

So much of learning to mask, to pass as 'normal', is learning how to encode 'appropriate' emotional information into communication. It's not intuitive, it's not natural, and I used to fuck it up constantly. Now I only fuck it up often. But understand this:

Me "fucking it up" doesn't mean I'm a bad person, or don't care, or lack empathy. It means that I've failed in my attempt to override my default behavior for the comfort of others around me. Why, though, is that on me? How often do neurotypical people try to adapt to MY needs?

I'll continue to add to this thread over time, the feedback I've been getting is incredible. I'm so glad that so many people seeing this are having the same "aha!" moment that I had a few years ago. Honestly, I'm tearing up thinking about it. Thank you all for reading.

(Friends I've been trying to respond to every comment and quoteRT but my mentions have gotten busy enough that I can no longer do that. If I've missed something you'd like me to see, please DM me so I can make sure it's visible to me - DM's open!)

Hey let's talk about another important subject: Empathy! You've probably read that autistic people don't feel empathy. This was medical fact for a long time, and understanding how it's wrong can explain a lot of the antipathy the autistic community feels towards the medical one.

The thing is, we feel _so much empathy_. You know how above I said we can project ourselves into complex systems? That includes other humans, or even societies. We experience these things differently - and our empathy can be orders of magnitude more powerful than you expect.

For instance, I started college in 2001, just after the 9/11 attacks. Every day on the news would be new horrors - terrorist attacks, disproportionate military response, obvious bullshit justifying obvious greed, etc etc etc. It broke my heart.

I mean that almost literally - watching the news was a bit like going through a breakup. You see everything that could have been, and everything that is, and that delta between them just fucking destroys you. All that lost potential, all that needless pain. I sobbed, constantly.

Eventually I learned that my empathy was unreasonable and, according to everyone around me, unhealthy. I slowly trained myself to stop taking it seriously. I closed off my capacity to feel as strongly as I had, and for a long time it helped. But it's not me.

Imagine living your life forced to ignore your own emotions. Imagine internalizing that the information your emotions were giving you is not to be trusted, and that if you act on it you will make others uncomfortable. Imagine how diminished your life would be.

I set out on the path that led to my discovery of my own spectrum condition in large part because I wanted to get back in touch with my emotions. I understood that I was living with a closed door in my head, and I was terrified to open it. When I did, I faced years of pain.

The really fucked up thing about the medical 'fact' that autistic people don't feel empathy is that it's rooted in a complete lack of empathy. Like so many other 'deficits', this is only a deficit if you define neurotypical behavior as objectively correct.

One of the reasons it took me so long to realize I was autistic was that I felt empathy so strongly. This myth has done so much damage, to me and to so many others. It's completely false. Autistic people in general feel _so much empathy_ - but we express it differently.

And those of us who feel it too strongly have had to learn how to ignore it, or turn it down. When I don't react the way you expect to something it's not that I don't care - it's that I'm spending a huge chunk of my brain constantly regulating my own emotions.

This perceived 'lack of empathy' is often reinforced by the fact that many of us struggle to make and/or maintain eye contact. Do you know how much information we get from looking you in the eye? Many of us can read more from your face than you could read from our biographies.

Do you have any idea how hard it is to have a serious conversation with someone when you can see the way they feel about your every word? How much more work goes into every expression, how painful it is when we cause pain? This is not a lack of empathy. This is overload.

One more clarification then I'm muting notifications for a while so I can work: I am not an expert. I am self-diagnosed, after careful analysis and a ton of reading and listening to people. I am describing my experience, and adding things I've read others say. I may be wrong!

We're still figuring out what Neurodiversity really means. None of these lines are fixed. You may say yes to so many of these questions and be totally neurotypical, as far as I know. You may be neurodivergent but not autistic! I don't know, not exactly!

But I know that millions of people seem to share my experiences, and I know lots of autistic people are telling me they've never felt so seen as this thread has made them feel. Still: if you think I got something wrong, please tell me and let's discuss it!

I missed this feedback - alogia is a thing! Some autistics cannot speak. It doesn't mean they can't communicate, it doesn't mean their brains aren't working at huge capacity, it just means they can't speak. Thank you, @PinaCalamity! twitter.com/PinaCalamity/s…

OMG we never talked about terminology! Let me do a few more tweets then I'm off to see my therapist. So, there are all these terms - neurodivergent, neurotypical, autism, autism spectrum disorder, autism spectrum condition, aspergers syndrome, kanners syndrome - confusing, yeah?

So, for a detailed understanding of the history of this stuff I strongly recommend you read Neurotribes by @Steve Silberman. That book will give you so much context and understanding, every page was a revelation to me. Here's my own glossary of meanings:

Autism is a set of traits that often includes those above. Autism Spectrum Disorder is when a person is disabled due to their autistic traits. Autism Spectrum Condition is when person has autistic traits, but is not necessarily disabled by them. (this is where I identify)

Aspergers/Kanners Syndromes are alternate names for the same thing, for complex historical reasons. Autism is subjective, can't be measured - and as we've seen there are many, many different presentations. Took years to realize everyone was looking at the same thing.

If you read Neurotribes you'll quickly learn that there were a lot of egos in play too, various folks trying to corner the market and build their careers on explaining away autism. It's a mess.

For a while, Aspergers was considered to be a separate condition - like ASD, but with less extreme symptoms. For a while we used the terms 'high functioning' and 'low functioning' autism, and Aspergers was the diagnosis for many 'high functioning' people.

We've since learned that presentation and severity of autistic traits can and does change over time. Mute kids grow up to speak, happy kids grow up to be shells of their own potential. This dichotomy was too stark.

So the DSM did away with the Aspergers diagnosis, and said "There is only Autism Spectrum Disorder, with a broad range of presentations." Confusing to many Aspergers patients who were really glad they weren't autistic, as it turns out. Lots of conflict, here.

But the reason is that 'high functioning' people are just those whose struggles are less visible. Nobody is saying some people aren't way more adversely impacted by autistic traits, that's obviously true! But 'mostly passing' with regular nervous breakdowns is no kind of life!

Nowadays a lot of us talk about Neurodiversity. That just means that there are different neurotypes, aka different ways that the brain works. A 'neurotypical' person (also sometimes called Allistic) is one who has the same neurotype as most of the other people around them.

Autism, ADHD, OCD, Bipolar - these all seem to be related to different but overlapping neurotypes. People with these diagnoses are not neurotypical - but unless they're really struggling they may never learn that fact. And so they have this gap in their lives, forever.

The Neurodiversity Movement says: there is no 'better' or 'worse' neurotype. We live in a society with conventions mostly predicated on neurotypical needs and behaviors, and neurodivergent people (that's everyone else) are forced to comply. But it's not right! We're not broken!

There's more nuance here to be unpacked if anyone wants to dig into it in the comments, but hopefully that clears up what can be a very confusing landscape of terminology.

Huh. I have never heard anyone say this before now but there ARE autistic people who don’t feel empathy, apparently! sorry friends, didn’t mean to erase! twitter.com/infinipede/sta…

Alright, let's keep it rolling: have you ever heard of Autistic Burnout? Your psychiatrist or therapist probably hasn't, unless they're doing a great job of listening to and believing autistic people. Autistic Burnout is what happens when you spend all day every day 'passing'.

When you spend every day masking, ignoring your own needs, not listening to your body's requests for less stimulation, more solitude, etc, then at some point your body can't keep going. For me this looked like a 14 hour sleep and a foggy brain, with weird confusing emotions.

And if you don't know you're doing this, if you don't realize that you're the only one consciously mediating every aspect of your presentation, you feel like a failure. "Why is life so hard for me?" you'll ask. "Nobody else is struggling, wtf?!" And it _sucks_.

Realizing I was autistic meant I finally understood that everyone else doesn't devote tons of mental energy towards monitoring how they speak, walk, sit, use their hands, facial expressions, verbal expressions (don't forget to smile and compliment!), etc etc etc.

All of that work? That's emotional labor. Some of us do it constantly, non-stop, with everyone, and don't even realize it's not sustainable. It works great, as long as you leave room for a breakdown every few weeks or months. If under high stress, days.

Burnout is real. You lose the ability to apply effort to anything, because you're just completely done. When you partially recover enough to go back to work Monday the process just resumes, grinding yourself down again etc. And if you don't know what's going, that's your life.

So now let me take a few tweets to riff on the implications of all of this above. What I've described is a demographic of human beings who process reality _differently_ from most people. Ok, so what, no big, right? Well, think about how you'd feel in the following situations:

1) Someone you love is really mad at you because they were telling you about a trauma they'd gone through and you attempted to bond with them in the most natural way - 'Yeah, I know what that's like, I had XYZ...' You apologize for making it about you.

2) Your friends plan an outing and you ask to go to a place you know is a bit quieter and less overwhelming. Someone says that's too far, so you don't want to be a jerk, you compromise. Then you spend 4 hours in a place so loud and disorienting you can't hear yourself think.

3) Your family member has a problem, and they're really upset about it. You can easily see how they could fix it, it's not even apparent to you why they don't understand the variables. But nothing you can verbalize manages to communicate this solution, and you watch them suffer.

4) You start a job you're super excited about, and on your first day take your seat in the big fancy open office. Every side-conversation, every person walking by, every movement of air and ringing phone and keyboard tap drills into your attention. You are expected to ignore it.

5) You're chatting with someone you're attracted to, and you're not sure if they feel the same way about you. You've gotten super interested in this person, think about them a lot, and you have to pretend you're not hyper focused on them because that's creepy.

6) You move in with a partner for the first time. You love them, you're so excited! And that's why you're so surprised when suddenly your life is misery! You no longer control your surroundings, and can't even explain why you need things a different way. You compromise.

A lifetime of these compromises, one day after the next, can and will completely destroy you. Can you see how you'd just learn never to listen to your own needs - eventually to the point of not realizing you have them? You save a step and act how you think others want you too.

But what happens to your self, in that case? What happens if you ignore your own needs as not that important, in interaction after interaction, day after day, month after month, year after year? Are you even alive? Do you know how many of us kill ourselves? It's a lot.

Yikes I did not mean to leave this thread on such a down note! Listen, finding out I was autistic was the best thing that ever happened for me. It was painful, for a while - it's a lot to process, and there's a lot to unlearn - but I see a clearer path now than I ever have.

My real problems weren't caused by autism. They were caused by the shame I was feeling every day just for being different. The stress of hiding it, the anxiety of fearing I'd be discovered as Other in some way I could never explain, the despair of never really being seen.

I'm here to tell you, if you're sitting where I was a few years ago, that it's okay to be who you are. You're not broken. You're worthy of love. You're trying so hard. Accept yourself, you're valid just as you are. I see you.

One last post - so many people responded overwhelmingly to this thread that I’ve decided to create a more permanent resource. Thank you for reading this far, and find us at reddit.com/r/AutismTransl… to learn more, and to discuss all of this in a richer context.

One last post, by request: I want to stress how much intersectionality enters into all of this. Autism - especially undiagnosed - creates huge burdens for some demographics that are utterly invisible to the rest of us, so we need to make effort to see it. twitter.com/sicklefrijoles…

One last-last-last post - this thread was meant to be relatable, and reach undiagnosed adults to let them know that maybe they should look into this. But I don't want to paint a picture that's only rosy - here is the dark side of my autistic experience. twitter.com/mykola/status/…

SINCE WRITING THIS THREAD: * I am now formally diagnosed, in addition to my self diagnosis. * I now believe autism to always be disabling in many contexts. * I was also diagnosed as ADHD ALWAYS TRUE: * The best gift we can give each other is to help each other feel safe.

Last update to this monster thread: if this resonated with you you may also find yourself relating to this long list of autistic moods. ;)

Update: if you found this thread interesting, come see the work I'm doing over at the Public Neurodiversity Support Center. coda.io/@mykola-biloko…