We’re Not All “A Little Bit Autistic”
Every time someone says "we're all a little bit Autistic", I feel it... I literally clench my fists. I do this partially through frustration and partially to stop me from lashing out. You won't notice me clench, all you'll see is me smiling politely and trying to move the conversation on. You won't see me ruminating on the smart Alec comments I wish I'd said for the next two hours/days/weeks.
The thing is, I know people mean well. They're trying to relate, to empathise, but - without wishing to sound too ungrateful - it hits me like a plate of cold vomit.
They're confusing relating to a trait with understanding a condition. When I have time to think calmly and without the initial anger-reaction, what I'd like to say is "We're not all a bit autistic. We're all human, and humans share traits. Autism is what happens when enough of those traits come together in a way that fundamentally shapes how a person experiences the world." In fact, I might just print that on a business card and hand it to them.
What Autism Is... and What It Isn't
Without throwing too much technical jargon at you, Autism is a neurodevelopmental condition - meaning the brain is wired differently from birth. Autism is not the result of anything that went wrong, we didn't "catch" it from anything or anyone (cough taking paracetamol during pregnancy or having the MMR vaccination did not cause your child to be Autistic), it isn't caused by a lack of discipline, and it isn't something you grow out of when you grow up.
"Spectrum" is a Shitty Way of Describing it
I dislike the term "on the spectrum". It's a wildly misconstrued way of describing the condition and it's about time it was done away with.
See, people hear "spectrum" and they assume that it's a sliding scale, with "super duper Autistic people" at one end, and "so mildly Autistic we're just a bit quirky" at the other. In reality, there is no such thing as "mild" Autism, the same way a woman with child can't be "mildly" pregnant... she either is, or she isn't. The "spectrum" is wrong and it's doing a lot of damage.
The spectrum would be best described instead as an allocation of traits, like a "trait map", or "autistic profile". I like to think of it like a mixing board, you know, the type you get in a music studio. It has multiple sliders for things like treble, bass, reverb, vocals etc. An Autism mixing board would consist of sliders such as: sensory processing, social and communication, executive function, motor skills, repetitive behaviour (sometimes referred to as stimming), emotional regulation and special interests. Every Autistic person has their sliders set to different levels and they're all independent of each other.
We also tend to have different sound boards for different environments. For example, my 'emotional regulation' slider would be way higher in an uncomfortable, stressful public environment, than it would be at home where I feel safe and relaxed.
So, to make it clear, different people are affected in different areas, to different degrees and in different combinations. One Autistic person might struggle with bright lights but have no trouble talking to strangers. Another might happily sit in a noisy pub but be completely thrown by a last-minute change of plans. Someone else might have no sensory sensitivities at all, yet find recognising sarcasm or reading facial expressions incredibly difficult. Different sliders. Different combinations.
There are Autistic people who are highly verbal, but unable to tolerate certain sounds and there are Autistic people who are non-verbal and have no sound sensitivity at all. Neither is less autistic than the other, but the verbal one may be labelled as "mild" and the non-verbal one might be labelled as "severe" by those who don't know any better. You don't notice the person who is verbal struggling, but it doesn't mean they aren't.
You see, this is what makes "we're all a little bit autistic" and "you don't look autistic" so damned patronising.
The Difference Between a Trait and a Condition
Everyone is late sometimes, not everyone is late due to a meltdown they had because they couldn't find their favourite water bottle that they absolutely have to take everywhere with them or they can't go out.
Everyone stumbles over their words sometimes, not everyone spends days ruminating on and picking apart conversations, trying to figure out where we went wrong, what we should have said and thinking that the other person now thinks we're a giant dick and will never want to speak to us again.
Everyone feels overwhelmed sometimes, but not everyone ends up unable to leave the house for the rest of the week after a busy social engagement because they're so burnt out they can't possibly face members of the general public again anytime soon.
I could go on, but you get the picture. The difference here isn't the trait itself, it's the consistency, the frequency, the intensity and above all, the cost. The cost is what makes autism a condition rather than just a quirk... and you usually don't see the cost if you're not the one experiencing it.
Why We Don't "Look Autistic"
This is such a terrible, harmful stereotype, built on poor data. Until fairly recently, Autism research has focussed predominantly on young, white boys. Girls, women, people of colour, not-so-much. Unfortunately the latter demographics have been largely overlooked until more recent years. They've systematically been misdiagnosed with mental health conditions, labeled as "weird" or just slipped through the cracks entirely. I guess hence we don't "look Autistic" because we fall outside of the normalised demographic.
Also, many Autistic people - yes, males included - have spent years masking their Autistic traits in order to come across as functional enough to pass as neurotypical. This means many of us have:
forced ourselves into looking at people in the eye (sometimes to the point where we actually don't look away).
scripted conversations in our heads ahead of time (in person, by phone and in writing).
learned about topics that we don't care about just so we can partake in this weird ritual the neurotypicals call "smalltalk".
bitten our tongues to stop ourselves from pouring out all the facts we've collected about space, trains, history... or {insert other specialist subjects}.
In short, we have worked our arses off to come across as "fine".
There's a Hidden Cost to All This Masking
Masking, you say? What is this you speak of?
You've seen us having conversations, looking at you in the eye, talking on the phone. What you haven't seen is the crippling anxiety, the endless hours of rumination on "that thing we said", the pacing up and down trying to psych ourselves up to make that one phonecall we can't quite force ourselves to make and the eventual meltdown because all of the above got just too much and all we could do is curl up on the sofa under a blanket.
You see, masking is not only exhausting to the core, but it slowly erodes our identity over time. We lose sight of who we really are, because we've spent so long smashing ourselves into the mould of a neurotypical person that we just don't fit into (square peg, round hole, anyone?!). This is why we have meltdowns, shutdowns, burnouts or all of the above - it all just gets too much to handle.
To the outside world it looks like a breakdown, or a crisis.
To us, it's fallout.
Given The Wrong Labels
Lazy. Rude. Angry. Awkward. Difficult. Antisocial. Unreliable. Sensitive. Just some of the words we get lumped with over the years of being undiagnosed and unsupported.
Obviously these are not accurate character assessments, they are labels Autistic people are given when no-one was looking for Autism.
Many of us spend years, decades even, believing these labels to be true... We tell ourselves "I'm weird", "I don't fit in", "I can't function properly" because we simply haven't been given the tools to help us understand that we're just wired differently. We're not actually broken assholes.
This is why I advocate for people who feel this way to get themselves assessed. We hear some well-meaning people saying they "don't believe in labels", but that's so fucking harmful, it's unreal.
Would you pick up a jar of something yellow from the fridge and drink it without checking a label to see it was apple juice rather than piss?!
The label doesn't change the person, it clarifies who they are.
Genuine Understanding
You neurotypicals don't have to memorise a list of our traits, you don't have to become an expert or spend hours reading medical papers. What you need is to look beyond the behaviour that you see on the surface, to the reasons why they're behaving that way. The person being "rude" to you is probably so overwhelmed they're at breaking point, the person who's unreliable might be so anxious, they're struggling to function, the person who seemed "fine" last week and now can't leave their house, has probably taken on more than they can cope with and needs time to decompress.
To summarise - Autism isn't a little "quirk", it isn't something we "all have a little bit of" and it isn't something you can see. It's a lifelong difference in our brains, which shapes the way we experience the world.
Our problem isn't that we're Autistic, it's that we've been trying to live in a world that kept telling us that there's something wrong with us, when really there's just something different about us.
