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So Someone Told You You Might Be Autistic, Huh?

You probably have some questions.

Mykola Bilokonsky

Hi, welcome, I created

this whole space⁠

for you. I spent 34 years undiagnosed and when I finally figured it out there were no maps, no obvious guidebooks, no comprehensive introduction to the space so that I could orient myself.

So in the fine tradition of Autistic people getting diagnosed as adults, burning out, and then dedicating their lives to helping others avoid their fate — I set out to create one. Listen, you’re at the beginning a process that may change your life or may turn out to be a red herring. Either way, now that you’re here you’re going to learn a lot about autism! :)

I’m here to help, and I’m going to do that by giving you a list of questions that may have occurred to you, as well as their answers.

But first, some resources!

⁠

How To Talk About Autism Respectfully⁠

is my current keystone essay. It’s a living document that best represents the state of the discourse around autism and neurodiversity.

⁠

Humanizing the DSM's Definition of Autism⁠

is my attempt to frame the diagnostic criteria in humane, relatable terms that aren’t quite so scary.

⁠

Please Stop Apologizing for Begging for your Life⁠

is my plea to everyone raised in a way that taught them to minimize their own needs, Autistic or not. (But this is many Autistic people).

You have to understand the relationship between

Neurodiversity and Trauma⁠

to start to unpack what’s going on.

Finally, as you read this you may experience a specific emotional reaction: your brain may tell you, vehemently and against growing evidence, that this isn’t you. That you’re just making excuses, that you know you’re just a bad person, etc. If you find yourself in that state, it is especially important that you read

Please Stop Apologizing for Begging for your Life⁠

So! To the questions!

⁠

How Do I Know If I’m Autistic?

That’s the million dollar question, friend. There are a few ways to answer this, and you’re going to have pick and choose which one makes the most sense to you.

Medical Autism Diagnosis

One way to know if you’re Autistic is to pay a neuropsychologist or other licensed diagnostician for an evaluation. They’re going to evaluate you against a set of formally defined criteria — in the US, that’s currently the DSM5. In other parts of the world they use other texts, which complicates this.

What you need to understand about medical diagnosis using the DSM5 is that the diagnostic criteria are purely behavioral — that means that you will only get diagnosed as Autistic if you act the way they expect an Autistic person to act.

What does that look like? Well, you can google the actual DSM5 diagnostic criteria for Autism, but honestly I’d recommend that you start

here⁠

If you understand the limitations and costs of this approach, it may be worth it to you to seek official medical evaluation. But understand that it’s not your only option, and that the results may not be helpful — or may even be harmful, if you get misdiagnosed with a personality disorder because you can make eye contact, or whatever.

Autistic Self-Diagnosis

If it doesn’t make sense to you to shell out thousands of dollars for a medical professional to tell you that you seem to have some Autistic traits but that they can’t see you as Autistic because you don’t behave like a white Autistic cis male child — well, who could blame you? There’s a reason that Autistic self-diagnosis is considered perfectly valid in the larger Autistic community.

Many of us feel that the medical establishment does more harm than good to the Autistic population by pathologizing and medicalizing what is actually a perfectly natural, normal human state. Autistic people aren’t sick, and autism isn’t a disease. It’s a way of moving through the world. Being Autistic is in fact a lot more like being gay than being sick — our subjective experience is queered from the mainstream in ways that other people cannot understand or relate to. (For a compelling argument about the relationship between neurodiversity and queerness see

Neurodivergence as Queerness⁠

by Erika Heidewald.)

Even if a doctor tells you that you are Autistic, you still have to do the work of understanding what that means and situating yourself somewhere within the Autistic space. In other words, a self-diagnosis is still necessary.

The best way to start the self-diagnosis process is to listen to and chat with a lot of Autistic people to compare experiences. You can, for instance, take a look at this list of

ND Life Experiences⁠

, and if many of them resonate for you, then that’s a good indicator that you’re neurodivergent — possibly Autistic, but maybe some other flavor. You can go on Twitter using the

#ActuallyAutistic⁠

and

#AskingAutistics⁠

hashtags.

If you want a place to explore longer-form questions, I created a subreddit a few years ago called

r/AutismTranslated⁠

where people gather to support and validate folks who are trying to figure out their own stuff. Today it’s a kind, vibrant, and growing community of over 20,000 people, and it’s a great place to get a bunch of different perspectives on your questions.

On Language

If you’re new to this space you’ve got a little bit of reading to do. You’ll find that some people are very sensitive to the ways that language is used when discussing Autism. Seemingly little things like “Is Autistic” vs “Has Autism” take on huge meaning, socially acceptable terms like “High/Low Functioning” turn out to be pretty ableist and harmful, and it doesn’t matter what anyone told you you don’t have “Asperger’s Syndrome” because it doesn’t exist, you’re Autistic.

(Hans Asperger was a Nazi who consigned “low functioning” Autistic kids to death; his name lived on in a diagnosis that divided Autistic people between those who had speech delays in childhood [Autistic] and those who didn’t [Aspergers Syndrome]. That’s it, that’s the difference, and it’s superficial, and environmental, and not a meaningful taxonomy for reasoning about Autism.)

There are really important and nuanced reasons for all of this. Check out

How To Talk About Autism Respectfully⁠

linked above as one place to get started, but honestly spend some time just asking questions on twitter using the “#askingAutistics” hashtag if you’re curious!

On Gatekeeping

There are always going to be those who tell you that Autistic self-diagnosis is “dangerous” and “invalid”. Mostly those people are coming from a place of good intentions but don’t understand that Autism isn’t a disease. Sometimes, though, they’re politically or ideologically motivated to keep the (predominantly white and male) population of Autistic people small.

Either way it’s totally okay to ignore these people. If you want to engage with them and hear them out you can ask them what exactly they feel the dangerous of self-diagnosis are. They’ll spew a bunch of stuff about taking services from people who need them more, but as we’ll learn below, that’s not how this works.

You don’t have to justify yourself to them, they’re no more qualified to withhold a diagnosis from you than you are to give yourself one. All of this is socially constructed, and self-diagnosis is perfectly valid.

A piece of wisdom that has helped me here: never listen to criticism from someone you wouldn’t go to for advice.

So! Let’s dig into some of the questions you’re probably grappling with! We’ll start with the scary ones to get them out of the way. An Autistic Awakening will only help you to live your best life, so let’s figure out how to reason about it in a way that’s productive and helps me make decisions out of love and agency rather than fear and reactivity. Ready? Here we go!

⁠

The Scary Parts

Let’s be honest about this, there’s probably a part of you that’s kind of scared right now. Unless you’ve spent a lot of time hanging out with Autistic people, your understanding of what autism is is probably pretty out of date and filled with harmful stereotypes at best. So let’s take a look at some of the things that may be going through your mind right now so that we can help you understand how to reason about them.

“Does this mean I’m sick? Am I broken?”

No, it doesn’t. You’re not broken. It means you’re different, though, and that some people will (unfairly) treat you as broken out of either ignorance or apathy. It’s okay, you’ll learn to either help them understand or remove them from your life. Your task right now is to unlearn the story that says “There is something wrong with being Autistic.”

Autism isn’t a disease, it’s a way of moving through the world and making sense of what you experience. There are aspects of your life that you probably really enjoy — your ability to dig deeply into the things that interest you, your attention to detail, your willingness to help out and contribute to goals that are bigger than your immediate short-term context. Your ability to reason rapidly and with nuance about complex systems. These are all informed, at least, by your Autism.

“Does this mean I’m disabled?”

Yes, and you always have been. Until and unless you’ve spent time in disabled culture, it’s really hard to imagine what disability actually is, even if you’re living it. There’s an essay on this topic coming up, but in the meantime you should google “medical model vs social model of disability” and understand that the social model is where a lot of neurodivergent people find useful tools.

You may be worried that your disability isn’t “enough” for you to identify as “really” disabled. I’ll speak to this more below, but for now you should know that that’s not a helpful way to think about it and actually does more harm than good in the long run.

If you are reading this and a part of you is feeling strong emotions at my assertion that you’re disabled, that’s okay. I’m asking you to trust me, that this will all make sense once you’ve worked through it and really understand what’s going on.

“Am I a different person now?”

You are who you have always been. The only thing that has changed is that you now have a term to describe a set of experiences that you probably never even considered to be related.

You may be thinking, “But surely I would feel Autistic if I was Autistic?!” and that’s the trick — you already do. You have felt Autistic for every second of your life up until this point, you just didn’t know it because other people defined that word in complex and terrible ways.

“What if people don’t believe me?”

Some won’t. I’m not going to sugar-coat this. The people who know you best will either respond with, “I know” or, “No you’re not.” Many of those in the second group don’t really know you — they know your mask (

On Masking⁠

If this diagnosis means that you are going to start unmasking and living a more authentic life — whatever that means to you — then prepare to lose a significant set of your relationships as you renegotiate your needs and boundaries with people.

The ones who can’t grow with you aren’t really your friends. This isn’t a cliched “they don’t really like you and this proves it” claim, this is a specific claim grounded in a specific reason: those people are friends with your mask, not with you, and your life will be better without them even if the loss hurts. Grieve it, it’s necessary but awful.

⁠

The Confusing Parts

Lots of the questions involved in an adult autism diagnosis are just frankly hard, because they require you to think about a lot of things you probably don’t have a lot of experience thinking about. If you trust your intuition, it may lead you to some strange places because it’s been calibrated against a lot of assumptions that never took the Autistic perspective into consideration. We’re going to step through these in some detail.

“I don’t want to take up resources from someone who is REALLY struggling.”

Friendo, just because you’ve managed this far on your own doesn’t mean your struggles aren’t real. You’re just used to taking full responsibility for your challenges because you’ve been taught that they’re character flaws. You work really hard to overcome them, and so you can’t view yourself compassionately enough to understand that YOU are really struggling, too.

The truth is there’s no “enough”. We all have different needs. Everyone’s needs are “extreme” in that if they aren’t met, that person will experience a diminished quality of and even capacity for life. Society is what determines which needs are valid and which ones aren’t, and that’s a calculation that has never treated everyone’s needs equally.

When we insist that “only those people” are “really” disabled, when we say “I’m not like them”, what we’re actually saying is that there is a line between Us and Them. That’s internalized ableism. There is no such line. 25% of people are disabled, and most people spend at least some part of their lives in that 25%.

Taking a stand, identifying your needs clearly and without shame, and claiming whatever labels apply to you is a courageous and liberatory act that spreads self-actualization throughout your social circles. In owning a “disabled” label, in standing up and saying “I am Autistic”, you’re creating more space for everyone who uses those labels to be perceived as fully human. You’re working to deconstruct Us and Them into a single Us.

Besides, lol, there are no resources for Autistic people that you’d be taking up. :P

“But seriously, I’m not like severely Autistic people!”

Well, that’s something we’re going to have to unpack. Because actually you are — you just have a different set of needs than they do, and more of your needs are able to be met given the way your life is structured. There’s no such thing as “severe autism”, despite many attempts to create such a category. There’s no one thing you can point to and say, “That’s autism!” so how could you then point at something else and say, “That’s even MORE autism!”, right?

When Autistic people present with challenges with speech they often have co-occurring apraxia, which is a difficulty with fine motor controls. They’re just as cogent and lucid as you or me, but their bodies won’t let them coordinate enough to use speech, and they require additional support to communicate.

When Autistic people present with intellectual disability it’s because they’ve got a comorbid intellectual disability. You don’t have to be Autistic to have an intellectual disability, it happens in non-Autistic people too.

“Severe Autism” is Autism Plus Some Other Stuff, and we need more people to understand that. What’s left, once you remove the trauma and the comorbid conditions? That’s a really interesting question.

“Wait, does this explain why...?”

Ah, there it is, yes. Prepare to spend some time reliving your life through an entirely new lens.

What you’re likely going to find is a long history of being told that you were lazy, lying, rude, arrogant, manipulative, and didn’t care about anyone. You’ll find a trail of friendships and relationships lost to misunderstandings that still baffle you. You’ll remember confusing childhood memories that make way, way more sense in the proper context. You’re going to have to spend some time unlearning the story you’ve been telling yourself about who you are, because it was reductive in ways that harmed you.

You’ll also realize that you’ve probably surrounded yourself with neurodivergent people. If you’re Autistic there’s a good chance most of your friends are also Autistic and/or ADHD and/or OCD. This is because we feel comfortable around each other in a way that we don’t around allistic people — it’s easier to understand and be understood by other neurodivergent folks.

“Why are some of my friends acting weird about this?”

So, yeah. You’re going to start figuring out some deep truths about yourself and the person you’ve always been deep down inside. Even after your mask’s friends have left your life, there’s still the question of what to do with people you love and respect who just never seem to want to talk about autism with you.

The thing is, you’re going through a rebirth and you’re going to be a different person on the other side. Letting go of as much as you can as you undergo this process will help you to have a clean break with your old self and really understand and appreciate your newly revived actual self.

People who are willing to hang with you through that are valuable friends, even if they don’t understand it. The understanding can take time. Besides, there’s a good chance that they’re also neurodivergent and undiagnosed and dealing with their own stresses that you are actively triggering for them — people have to heal on their own time.

“Why didn’t anyone notice? It was so hard!”

This is a new frontier. Look at all of the medical literature and clichés and stereotypes about autism that you probably believed until 20 minutes ago — nobody wants to think of their kid that way. If they noticed your challenges, they likely minimized them because our culture teaches us that disability is a shameful personal matter and not a communal system of relationships.

Also, think about your parents (or at least one of them). Totally Autistic, right? They grew up in a time where they had to learn to mask harder, you know? BTW, they won’t necessarily react well when you tell them, because a lot of parents will have a limited understanding of autism formed even before yours was. To older generations, “Autistic” means “Subhuman” on some level they’re not comfortable articulating. They may resist seeing you that way, and may get offended if you suggest that it’s also true for them. This stuff is nuanced and takes time.

Finally, support for Autistic kids is limited to non-existent. If you HAD been recognized and diagnosed as a kid you would have been pathologized in all kinds of really hurtful ways and then dumped into an ABA curriculum. That would have led to its own world of trauma.

“Why am I so sad, though?”

Because your mask is the person you thought you were. In a way you ARE your mask more than you are your self. Your mask has protected you, served you and guided you through life. It’s literally the closest being to you, and you’re in the process of realizing that it’s a harmful phantasm that was draining your life force all along.

It’s okay to grieve that. You really are losing a relationship to the closest person to you in the whole world, even if they were a maladaptive coping mechanism gone rogue. But know that you’re shedding that skin so that you can finally grow into your best and most authentic self.

⁠

The Awesome Parts

There’s a lot crap to work through, eh? The good news is that the process of working through it mostly leaves you stronger, healthier and more capable than you were before. It’s not easy — give yourself a few years for this, more if you’re in

Autistic Burnout⁠

“You mean it’s not my fault?”

Never was. All of those times you said X and everyone agreed you meant Y? They were wrong, you meant what you said and they misunderstood you. Google “The Double Empathy Problem” to learn more about the ways in which it turns out we don’t have a “social deficit” — at least any more than they do. They struggle to understand us as much as we struggle to understand them.

Listen, you still have to take accountability for your choices. Yes, you may have made some of them out of distress or trauma — that may be clear to you only now, in retrospect. But it’s important not to frame Autism as an excuse for poor or harmful choices. It may be an explanation for a misunderstanding, but once actual harm has been done it’s important to take accountability even if you didn’t mean it.

That said: a lot of problems Autistic people face are not the result of our choices, they’re the result of other people not understanding what we need. And you’re ready to start learning how to address that.

“You mean I don’t have to carry this shame?”

For me that was the best part. Once it clicked that I was entitled to take up space in the world, that I didn’t have to spend my life apologizing for existing, that it’s in fact okay to be who I am — I had a single moment where 35 years of shame sloughed off.

I’m serious, the next day at work people told me I was walking differently. It fundamentally changed me, and if you want to have this experience then learn read

On Shame⁠

to understand what’s going on.

“You mean I can have a rich relationship with my own emotions?”

Yeah, it turns out alexithymia is more of a form of literacy than it is a form of permanent impairment. You can learn to listen to your feelings without getting overwhelmed by them, but it takes a bit of practice.

Here’s the trick: your emotions are senses, just like hearing or seeing. But they’re calibrated to associated internal state changes to subjective physical embodied experiences instead of external ones like the things we’re used to calling senses.

Once you understand that you can interact with your emotions in a more healthy way. Read

On Emotional Processing⁠

to learn more!

“Wait, does this mean it’s fine if I like to play video games for 8 hours straight and hate parties? I’m not wired wrong or anything?”

Friend, that’s how your brain works. Your attention naturally pools deeper and more richly into the things you’re interested in. Maybe that’s video games, maybe that’s work, maybe that’s something entirely alien, we can’t really control it. What I can do is tell you that it’s okay to stop feeling shame just because you don’t want to spend your time the way other people want to spend theirs. <3

“You mean I can heal my trauma?”

Yes. And the resources on this site will help you to do that. Start

here⁠

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

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fonewearl

Thank you for this article. I am years into my knowledge of myself, and it is exactly the kind of article that would have been profoundly helpful to me when I was starting my journey.

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NoMinorChords

Wonderfully observant. While I don’t agree with everything, I particularly related to the metaphor of “queerness” as being something that applies to both gay and autistic people. Even though I am straight and cis, I have usually felt more comfortable around gay people - women or men, autistic or not - than allistic heterosexuals. I don’t think it’s a coincidence that the percentage of LGBTQ folks in the autistic community is significantly higher than in the allistic world.

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JBoyak.

Thank. I just turned 34 and this has fundamentally changed the way I see myself. Thank you so much!

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Janelle

I just sent this to my best friend (borderline self dx) and daughter (kind of medical dx). I asked my mom about this stuff awhile ago and she told me that they did “testing” when I was little and they said I had “autistic tendencies.” Woulda been nice to know 30 years ago!

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How Do I Know If I’m Autistic?

Medical Autism Diagnosis

Autistic Self-Diagnosis

On Language

On Gatekeeping

The Scary Parts

“Does this mean I’m sick? Am I broken?”