If you knew me before late 2022 (when I started identifying myself as Autistic), you might have thought: “but Christopher…”

“You don’t look Autistic at all”

This is the number one response to late-diagnosed or late-identified Autistic people, especially women and people of color. Other common ones are “Well at least you are only mildly Autistic” or “You are so high functioning, I would have never known”.

And I’m going to be frank with you: these are terrible things to say to someone.

Autism isn’t a plague.
It isn’t a defect.
It isn’t even a disability in the sense of a physical lack or limitation.

It is a different kind of being; as mentioned in my previous blog: a different brain wiring.

Most of the “difficulties” or “disabilities” related to Autism are social ones, because we don’t fit into the boxes that neurotypical people pretty reliably do. For every innately worse thing about Autism such as sensory overwhelm, there are innately better things like special interests. It’s a balance, and one that I and most Autistic people find leans to the positive side.

In other words: we like being our Autistic selves.

Polls consistently show that Autistic people would not take a miracle “cure” if one existed, and are adamantly opposed to the kinds of research that heads in that direction.

We aren’t a blight that needs to be removed in future generations through genetic screening, we are people who have value and contribute to society in our own ways.

Some of us need more help than a neurotypical person to get through life, but that doesn’t make us less valuable or a worse human.

When you talk about qualitative ranking of Autism, and especially “functional” labels, you are reducing a human being into a number that can be judged as “too low”. This is not good at a societal level, but it isn’t good at a spiritual one either. Please stop.

Anyway, enough soapboxing, lets get back to the issue at hand.

Look at the Data

So, why don’t I look Autistic? Well, we will talk about stereotypes in a bit, but how about we look at numbers first?

To go back to Autism’s better researched cousin, somewhere between 3% and 5% of the population has officially diagnosed ADHD or ADD. I say officially diagnosed because even the better studied condition of ADHD is woefully under-diagnosed and misdiagnosed as other conditions, especially in women who present differently than the male population who has been more thoroughly studied.

In 2000, Autism was officially diagnosed at a rate of 1 in 150 children (0.66%).
In 2022, it was diagnosed in 1 in 36 children (2.8%).

I won’t be surprised if in the next decade the rate of Autistic diagnosis reaches that of ADHD as the diagnostic methods get even better. Again, this skews largely to men as women do not present the same characteristics or same degree of characteristics as men.

Fun fact: There is also a huge overlap between these conditions. Up to 50% of people who are diagnosed with one are also diagnosed with the other.

And every one of those Autistic kids grow up to be Autistic adults, but somehow the diagnosed rate in adults is way lower. So where are all the Autistic adults?

Stereotypes

When you hear the term Autism, who pops into your head?

  • Rain Man? A so called “idiot-savant” who can’t take care of themselves?
  • Shelton from Big Bang Theory? A “know-it-all” jerk who people tolerate?
  • Elon Musk? A man so detached from reality that his employees have to actively manage him instead of the other way around?

Cold & Robotic

This stereotypical Autistic person is actually a real thing. I have met one or two these people myself. But they are in the minority in the Autistic population, as people like them would be in the minority of the neurotypical population. They are notable precisely because of their obvious oddities.

Instead, most of the Autistic people I have met are capable of taking care of themselves with minimal if any assistance, and have warm, friendly, and often hilarious personalities.

Intellectually Disabled

What about the Autistic people you see in the news or at charity fundraisers who are intellectually/developmentally delayed/disabled, and will never be able to live on their own without a large amount of assistance? These people exist too, though it is important to note that intellectual and learning disabilities occur in Autistic people at exactly the same rate as in neurotypical people.

That statement is probably surprising to some of you. Why?

It is because organizations like Autism Speaks (an organization by and for neurotypical caretakers of more obviously disabled Autistic people) have a vested interest in portraying the rates of so-called “severe Autism” as astronomically high.
It is the same reason that the police inflate crime numbers, and news corporations mostly cover negative stories.
It just captures more eyeballs for there to be a clear and present “danger” (reminder: Autism and Autistic people are not dangers).

Nonspeaking/Nonverbal

There are some Autistic people who (for various reasons ranging from co-morbid disabilities, to constant sensory overwhelm, to simple fear of being misunderstood) find it difficult or impossible to speak.

In the past, these people would be (and many still are) written off as intellectually disabled, and described as non-verbal. But thanks to Augmented Assistive Communication techniques (including many AAC apps for tablets), we now know that these people are in fact fully capable of verbal communication.

Some of these poorly labeled “non-verbal” people have even gone on to graduate from college, and be “vocal” self-advocates through written and text-to-speed communication methods.

It is critically important not to discount people who have difficulty communicating as having nothing to say.

We have the technology (and understanding) to do better.

Masking

So what do Autistic people really look like if they don’t look like these stereotypes?

Well, we look like you.

In fact, we often look as much like you as our differently wired brains are able to. Because man oh man, it really stinks to forever be the odd man out.

This is the concept called masking.

Even neurotypical people mask socially: you become a slightly different version of yourself in different contexts like close family, friends, or acquaintances. This is a way of conforming to the group’s shared expectations which you pick up on naturally.

But for Autistic people, it is very different. For one thing, developing a functional mask that passes for anything close to neurotypical most of the time is a constant and exhausting effort of will that takes years to perfect.

Most Autistic people are lucky if they manage a single masked persona, much less the handful that neurotypical people swap between at will. And because we are so conscious of being different than everyone around us, we tend to hold onto these masks much more tightly, frequently wearing them even when we are alone, until we dont remember what we looked like without the mask.

You can always tell the people who are bad at masking, because you get this creepy vibe that something is just a little off. This is called the uncanny valley, and I have even experienced it myself talking to other Autistic people at times, especially before I recognized I was one of them.


For more reading on the topic of Autism: click here