It occurred to me today that, while I’ve mentioned on a number of occasions on here that I’m somewhere on the autism spectrum, I’ve never really clarified what that means in terms of how I feel on the inside. I thought that might be something that the neurotypicals among you might find interesting.
A couple of caveats here. First, and most important, is that *I am not speaking about all autistic people*. There is still a lot of dispute about what even properly counts as an autism spectrum disorder, and to what extent some difficulties are caused by autism and to what extent they’re caused by comorbidities. I’m still waiting for an official medical-records-type diagnosis (I’ve been given unofficial diagnoses by… basically everyone, medical professional or otherwise, who’s spent two minutes talking to me. Getting it on one’s medical records as an adult is a multi-year process in the UK though due to chronic underfunding in this area.) but I am 100% certain that that diagnosis will be of Asperger’s Syndrome, which is still medically recognised as a separate diagnosis in the UK but not in the US, where it’s lumped in as part of “autism spectrum disorder”. So my experiences almost certainly won’t match those of, for example, nonverbal autistic people. It may even be (though I suspect not) that when the causes of autism are properly identified, those people will turn out to have an entirely different neurology than mine.
There’s also the fact that autism spectrum disorders don’t travel alone — almost everyone with an ASD has a lot of other things as well, which I strongly suspect are actually different expressions of the same underlying cause. In my case many of these things (my autoimmune problems like asthma and arthritis, my stress-related health stuff like hypertension, my gut problems) are purely physical, but some (the diagnosed anxiety, depression, and dyspraxia, and the sensory processing disorder which hasn’t been diagnosed but I *strongly* suspect I have) are brain/mind related. I may be assigning some symptoms to ASD that are actually symptoms of one of these, and so other autistic people may read this and think “what’s he talking about?”
And there’s the converse of that — there’s no control me who isn’t autistic to compare notes with, so there may be things I say here that are just part of the universal human experience. I’m not very good at knowing what’s something that happens to everyone and what’s specific to my own bunch of peculiarities.
So this is what it feels like on the inside to be me, and some of this may be true of some or all other autistic people…
The first and most important aspect, from my point of view, is that *everyone else is playing a game, they won’t tell me the rules, and if I break one the penalties could be anything from nothing at all to ostracism or even death — and which penalty applies when is one of the rules they won’t tell me*.
Everything from flirting to how to behave professionally in the workplace to proper subjects of conversation at a party to queuing protocols in different types of shop is governed by rules that one is expected to know without ever being told them, and this expectation is so strong that even to ask for clarification of the rules is, often, itself against the rules. There’s a reason so many autistic people are paranoid or anxious.
The cause of this *seems* to be to do with sensory processing, which I’ll talk about a bit later. There are a lot of cues for behaviour, in things like body language, tone of voice, or facial expression. And for me at least, and I think many other autistic people, it’s not that we don’t pick these up, but that we pick them up *along with about thirty other things*.
You might think that the slight raise of the eyebrow is communicating “offer to buy me a drink” — and it might well do so to a neurotypical person. But I, at least, am also noticing dozens of other things in posture, tone of voice, and so on, and find it impossible to determine which is the signal and which is just noise. The options (which I vacillate between, as do many autistic people I know) are either to just throw everything away as noise (and thus miss any hint less subtle than a giant neon sign), or to treat everything as signal (and annoy you because I’m trying to work out what you really *meant* by scratching the side of your nose, when what you meant was that your nose was itchy).
This is, incidentally, the root of the idea that autistic people have no empathy. Nothing could be further from the truth. Autistic people are incredibly empathetic *when you communicate with us in a way we understand*. Often much more so than neurotypical people.
But the result for us is that we often find ourselves in situations where everyone expects us to behave one way, won’t tell us what that expectation is, and then punishes us for getting it wrong.
Imagine walking into a room, saying “hi”, and getting punched in the face. When you ask “what was that for?” everyone just says “you know”. This happens to you seemingly randomly, maybe once a year, but the rest of the time if you walk into rooms and don’t say “hi” people think you’re being rude. Eventually, after maybe twenty years, some kind person takes you aside and tells you that on the third Sunday of a month with a “y” in its name you’re meant to guess a number under fifty when you enter a room for the first time. This stops you getting punched for a couple of years, then one day you walk into a room, say “thirty-seven”, and everyone jumps on you and beats you up because your advisor had forgotten to tell you that the number shouldn’t be prime if it’s a leap year.
This is how every single social situation (or at least those involving a majority-neurotypical population, such as being in an office or at a party, or, increasingly, participating in online social networks) feels, at least to me, and I think to many other autistic people.
I’ll have more to say on this, and on sensory issues and executive function, in part two…
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I’m not at all autistic, as far as I know. But I do struggle knowing the rules a lot. It’s a bit chicken-and-egg with not having many friends until my late teens, losing some formative socialising there. Not being typically masculine but nonetheless cisgender, not having an interest in sports, these things have led to a situation where, well into adult life, I’m still playing catch up when it comes to understanding social cues, understanding what behaviour is aggressive versus what is just playful.
What I’m getting at here is, having 0.0000001% of the trouble understanding the rules that you have is hard enough. I can’t even begin to understand what it’s like for you.
Thank you for sharing!
Thank you for that. My 32 year old son has Down syndrome and Autism together with many physical problems which makes him a permanent enigma. As you say he is very empathetic given the right conditions, but …. These days he seems to be more confused by us and his very dedicated band of personal assistants. Just as the world is confusing for him, he is confusing for us and we need more expert help to bridge that gap in communication. Although the human genome is now known, and the genes that are bridged by his trisomy on chromosome 21 are all known, there seems to be no research to help him, although a basic understanding of which metabolic chains have been disturbed should be easy to arrive at. Whether this would help people who purely are Autistic, I don’t know, but it seems that because society has decided to kill Downs people before birth, they are just not trying. And yet those of us who know Downs people know that those with the ability to speak see through any nonsense and have such a lot to offer society as a whole. At the moment the only help we get is comforting words from the social workers. The medical profession (with a few notable exceptions) are totally useless.All the psychiatrists can do is to offer drugs to calm him down whether he actually needs drugs or not.
I suppose what I am saying is that people who are “different” for any reason are being seriously let down by an uncaring society. We all need to look at ourselves and ask ourselves what our priorities should be, and how we can persuade our society to do the right thing.
dm – your comment sounds dangerously familiar too. I am now a pensioner and a grandfather, but having spent an isolated teenage in a boarding school in which I suffered crushing paranoia and left at 18 with none of the normal teenage experience, catching up was very hard work. After an exciting decade I got married when I was 30, and perhaps age contributed to my son’s Downs syndrome. But not knowing the rules was hell at times. Often it was not the not knowing that was so horrible, but that because I didn’t know I disappointed the expectations of others.