How does autism feel?
How does autism feel? It's a common question I get from people, paraphrased in a few different ways (perhaps the most common being "What's it like being autistic?" or, less politely, "What's it like to be so different?".
It'll probably surprise you to discover I don't take exception to this kind of question. In fact, as I hope you'll figure out for yourself as you read the rest of the blog, I don't take exception to any sincere question. Nor do I ever take offence at anything, because others' opinions are none of my business and so are nothing to get upset about.
Besides, there are no stupid questions...
... just stupid people asking them.
Anyway, I have two answers to these questions and their ilk — a short one and a long one.
The short answer...
The short answer is as facetious as it is short, but it's also correct.
I guess being autistic for me is the same as being NT for you. Neither of us knows any different from what we've always had and how we've always been.
I can't speak for others, but certainly for me it was only as I got older I began to realise I wasn't different because of my ability to cope with stuff.
I wasn't "getting" the stuff to cope with.
The long answer...
Bear with me on this.
Before we go any further, you need to understand what autism is. Not so much in neurological terms but in terms of how we experience it. Alas society places too much on the outward presentation of autism than on our internal experience.
There's an excellent article here you might want to read as a primer (it opens in another window, so you can have a look and then come back here).
So... given what you've just read, I hope you'll understand any specifics I give you are necessarily particular to me and will almost certainly be different for another autistic.
An amusing observation
If you read the article I linked to above, you'll see how if every autistic is a different mix of parts of the spectrum, every one of us has a unique colour (I deliberately avoided using the most appropriate word — frequency — because some idiot is bound to think I'm talking about spiritual energy, the frequency of the universe, and, may the gods preserve us, "Indigo Children").
But, seriously, I want you to get grips with an important message the article gives. Theres' no such thing as "mild" or "severe" autism. There are only different levels of support needed.
What's easy for a non-verbal autistic with poor muscular control might be nigh on impossible for me, and vice versa.
How autism appears isn't the point.
How autism feels is a better measure of how it affects us.
How autism really feels...
My own presentation is characterised by several traits Hans Asperger identified in his original paper, and
- I struggle with social interactions and small talk. Eye contact, while not uncomfortable, is pointless because I gives me no information or emotional connection.
- I enjoy fiction but find it almost impossible to follow if it's about people and relationships.
- Details are far more important, engaging, interesting, and memorable than generalities (I've made this the core of my business and have a flair for spotting the 20% of details in a business responsible for 80% of the good and bad results).
- I can't read people, not their faces, body language, or intentions. I don't pick up on hints and tend to take things literally.
- Once I get interested in a topic, you can't prise me away from it, and, certainly before I had a wife to drag me away from it, I'd be at my computer or my books working and studying, forgetting to eat and sleep.
- I'm blunt to the point of rudeness. I don't intend to upset people but when I do I can't see how I have. And when I can, why they'd be upset. Things rarely end well.
- I need my routines. I get pissed off beyond reason when I can't follow them.
- Making friends is hard work (not least because I don't particularly want to).
There is more — such as some failings in executive function, particularly with planning — but these traits affect how I tend to feel as I go about my day.
As you can imagine, this all makes relationships with others fraught at times, and so I sum up what it feels like to be autistic in a Neurotypical world like this:
"It's like you've been dropped in the middle of a complex and unfathomable game everyone's busy playing 24 hours a day, seven days a week. And everyone but you knows the rules. But when you ask what the rules are, they treat you with scorn and derision and call you "weird"... and say you must know what the rules are, because everyone knows what the rules are. Thing is, if you try to step out of the game, they think that's weird, too. You can't win. You can't even draw. And they won't let you stop playing the game without bugging you about joining back in".
THAT is how autism feels.
To me, at any rate.
But always remember: if you've just met an autistic, you've met just one autistic. We're all different and our autism affects us differently.
So if you want to know something about us...
... just ask.
Jon McCulloch, The Evil Bald Genius
Author, speaker, business owner, and autism advocate