The Absolute Worst-Ever Myths about Autism that Just Won’t Die

or “Everything you thought you ‘knew’ about autism is completely and totally wrong”

“What’s inside an autistic person’s mind? Nobody knows!” 🙄

Hey, Stranger! Since New Year’s is all about countdowns (sort of), I’ve decided to do my own countdown debunking the absolute worst misconceptions about autism and autistic people of all time. Remember, I’m certifiably autistic with ADHD, have 3 autistic kids and an autistic spouse, so I’m speaking from decades of lived experience rather than armchair psychologizing. Stick around towards the end, where I explain the secret real description of autism that only autistic people (and alarmingly few clinicians) understand.

First up! Myth #10: We’re aliens — Unfathomable, unknowable black boxes.

Wow, way to just dig right in, Heather. Strap in guys, because it’s gonna get real.

I have to confess, one of the reasons it took our family so, so, so long to ever remotely suspect autism in even one of our sort-of “Aspie”-ish kids was that they all seemed just like regular kids, with regular feelings, regular hopes and dreams, articulate thoughts and ideas, rich personalities and all of that stuff. Sure, they had quirks, but who doesn’t have quirks? Everyone has quirks, (yes, even you.)

Talking, laughing, pointing, fully-engaged with great eye contact by 9 months (and continuing throughout childhood) meant: can’t be autistic (but totally was/is).

But I want you to stop and think about this for a minute. They seemed like regular kids because autistic kids are regular kids. Full stop. I know you don’t believe me, or you think I mean they should just be treated like regular kids (which they should), but no—they are regular kids inside, period. We are the same inside. Mind blown, I know. The difference is in how we appear to others, and what’s been erroneously called “high-functioning” vs “low-functioning” — is actually not that at all; it’s two things: 1) how much we are able and willing to hide our natural selves to “blend in” (even when very young), which involves significant self-annihilation, and 2) whether or not we have co-occurring language, intellectual, and/or motor challenges. That’s it. If you know an autistic person who doesn’t “seem” autistic, you know an autistic person who has become an entirely different person to fit in; you are seeing an autistic person with superb acting skills. (Also, you don’t really know what autism is — we’ll get to that.)

So, even once one child came back from an evaluation with so-called “mild” autism, which isn’t really a thing, but that’s a later “myth” post — I was like, wow, I never knew they were an alien. 👽🛸👾 Huh. I don’t get it. How did I — and every pediatrician, psychologist, and teacher for more than a decade miss that they were actually an alien? THEN I started reading blogs and resources about subtle autism (which is actually just normal autism, but presents differently), especially in women and girls, and I saw all this tiny insignificant stuff that totally applied to me, but like NONE of the main criteria in the checklists or DSM applies to me as written and generally interpreted, and I’m totally the opposite of that lovely kid of ours, in that I’m a huge extrovert who loves cuddles, isn’t shy, loves parties, and is pretty darn socially savvy (though I faked it until I made it in the past—that’s key).

So what the heck was going on?! I kept thinking: I am obviously not autistic; I am a super normal person, with super normal thoughts and brain patterns, normal ways of going about things, super frickin normal! How can this be? Something must be wrong here…. (spoiler alert: it’s the DSM).

To us, neurotypical thinking and social patterns are CRA-zy, and if we ran the world and wrote the DSM, THAT would be a disorder.

Long story short, I am totally autistic, and so is our whole family of five, and we’re fine, y’all. But I literally shut down for an entire month after my own evaluation in a near-coma just being like, wow, I guess I’m an alien. How did I NOT KNOW I was an alien???? And it was only in these really valuable, affirming conversations I had with my evaluator in follow-up visits and eventually with my autistic therapist — who’s autistic herself — was that “normal” people, including many or most clinicians and researchers and non-autistic advocates — generally have NO clue what autism actually is or feels like. Zero clue. You have no clue (*unless you’re autistic), the experts have no clue — everyone has got it completely upside down, and it’s frankly largely because of that stupid movie which shall not ever be named (ok it’s RAIN MAN) and all of pop-culture depictions since then. Frickin Hollywood. (Hire autistic actors!)

Anyway, I digress—it’s a thing. So here’s what’s real. We think like normal people, we feel like normal people, we have normal needs and desires (we also have additional or enhanced needs and desires, but that’s not important here). Think about how you feel every single day as a regular-ass human, and that’s what it feels like to be autistic. I’m serious. Let’s dive deeper.

You’re probably thinking, “well then you aren’t actually autistic!” or “you’re only just over the line.” Nope, I’ve got the official piece of paper to show it, and I “scored” much higher than average autistics on many traits. Or, “you must be a rare normal-ish autistic person!” Also no, though I may appear that way. Or, “You actually don’t know what being “normal” is like!” LOLOLOLOLOL no. Here’s the thing, many of the myths I’ll debunk in future posts aren’t “symptoms of autism” at all. You heard me right: the defining characteristics of the “disorder” (BTW, it’s not one) are…..just completely batshit wrong. 😲

We like cool bands for our generation, we wear lip gloss, we do Beach (even though the sunscreen/sand/sweat combo is the worst form of torture ever invented ☠️). Okay, so we like NASA more than average, whoop-dee-frickin-doo. Space is cool, get over it! 😆 🚀

How is that possible? — you might ask, and rightly so. Well, many of the symptoms that are so commonly thrown out there as main characteristics are actually 1) often just stress responses to being forced to live in a manner or environment that’s damaging to our well-being or physically excruciating/torture to us, and 2) also often coupled with those co-occurring conditions that are sometimes or commonly associated with autism but are somewhat distinct issues, or they are part of a specific autistic profile, in the same way a lot of autistic people have ADHD but many don’t. There are as many autistic profiles as there are “average” people’s personality types. There are a whole lot of autistic people who have co-occurring communication, physical, and intellectual challenges, for instance; there are just as many of us who don’t, (or we’re hiding/hacking them). Conversely, there are plenty of non-autistic people who have challenges in those areas as well.

NOTE, those challenges can be so, so, so, so hard for those autistic individuals and families who struggle with them, and they ARE more common in autistic people than others, and I do not in ANY WAY diminish their struggle or suffering or have any desire to distance it from “plain” autism — we’re all equally autistic. But that’s not “what autism is”; it’s just a single profile, and within that, there are zillions of subtypes and degrees of communication challenges and other differences. Those issues are sometimes and even often indicators of autism when coupled with other key traits, and we should totally dedicate so many resources to helping to alleviate the unique challenges of those kind of profiles, but they aren’t Autism with a capital A. They’re autism with specific challenges — that’s it.

Autism is actually just a set of innate traits, extra-sensory abilities (that seem like over-sensitivity to others), wildly different life priorities, communication strategies, and norms, and a different nervous system wiring pattern. The reason neuro-normative culture and expectations sometimes (or always) freak us out and cause massive stress is not because we can’t follow them or don’t understand them but because we don’t value the same things. Your norms are not our norms. Your ideal communication styles are — to us — bad communication. (Who the heck came up with passive-aggressiveness???? Not us! That’s for damned sure.)

Bring your capes and sunglasses: autistic folks are bound to get spicy in our natural environs (also just as likely to curl up like sloths and read a book in a corner at a party). And you never know which it’s gonna be!

We value logic and reason over things that “feel” true (and that’s somehow bad????). We feel like joy is the main point of existence and belongs in public, everywhere, all the time. We tend to value complete honesty and directness over hiding (or obfuscating) thoughts and emotions (we call this “being real” while you call this “being blunt”), we value deep connection versus shallow interactions, and we would design systems and spaces COMPLETELY differently (and better for everyone) if we were in charge. We’re born experts in a world that tries to force us to be generalists. So what if someone is obsessed with Legos — who do you think designs Legos? So what if someone is super into dragons — who do you think writes your Games of Throne? I know of an autistic tween who is super into medical stuff and got a suture set for Christmas — how cool is that? I guarantee that many of your doctors over the years have been super autistic, whether they knew it or not.

Why do they have to call it a goddamned “special interest” and make it seem all weird (by putting it in the DSM!!)? They’re just interests, guys. You have them too, but they’re usually more shallow than ours. You dabble, we master. You play pickleball, we invent the Theory of General Relatively (just kidding! (sort of)). But somehow, we’re the weirdoes…

That’s it for this myth! Catch you later.

Cheers y’all!

~Heather