A little story about ears!
One day, when I was in my early 20s, I was chatting to someone about something (I can’t remember what) when I suddenly bashed my hand against the side of my head. It was an instinctive reaction, something I often did (and sometimes still do) when my ears did their things. These “things” were (and still are) sudden high-pitched whistles, whooshing noises, a sort of ba-dum ba-dum ba-dum sound, and a ringing noise, similar to that you get after being at a loud gig.
The person I was with enquired about my behaviour and I explained that the ears were doing their thing, like ears did. You know?
The person didn’t know. Apparently their ears didn’t do things. However, this person did ask me whether I had tinnitus, when I went on to explain what my ears usually did.
I didn’t believe so. I’d never heard of tinnitus, but when I started to investigate what tinnitus was, it did seem to describe what my ears did. What I considered normal behaviour for ears did seem to be called tinnitus. So that was that. I had tinnitus. I was perfectly used to it, as it had been going on as long as I could remember, and most of the time it’s only mildly annoying, so I just let it get on with it and carry on as usual, just occasionally bashing myself on the side of the head, looking round to see where the noise is coming from, or asking my husband if it’s real or if it’s me!
But the real point of the story is this – I didn’t know there was anything strange about ears making funny noises because my ears had always made funny noises. I remember them doing it right back to my early childhood. It didn’t occur to me to ask anyone else what their ears did because I just grew up assuming everyone else’s ears were the same as mine and that was normal behaviour for ears!
The discovery about tinnitus didn’t actually provide me with any new information about my own ears – it made me realise that other people’s ears were different. I found out that there were loads of people whose ears didn’t make noises! Weird!
A large part of discovering I’m autistic has been pretty similar. As I started to read book after book after book and went obsessively through lists of traits, I didn’t initially think “this means that I’m autistic”, rather, I thought “My normal life seems to be described by this word autism.” What the autism books were describing were things I regarded as commonplace, normal, ordinary. I didn’t go round asking people whether they cut labels out of clothes – it’s had always been such a normal part of life that I assumed everyone did it. I didn’t ask people whether they went home and rocked back and forth on their sofas because I just figured they did once they were on their own. I assumed everyone scripted their conversations and practised them over and over. I assumed everyone who ate pastries with their fingers got a crawling feeling from the grease and a desperate urge to wash their hands. I assumed it was normal to get back into the car feeling exhausted and nauseous after going shopping. And I assumed that everyone else also ended up sick, tearful and exhausted if they stayed away from home for more than a couple of nights. Because these things were my normal and always had been. Pretty much everything in the autism books was describing my very ordinary unexceptional life.
One of my initial responses to this was to be somewhat bemused that many of what had been considered my quirks and eccentricities were being described and claimed by this thing called autism. Which led to me exclaiming to a friend on one occasion:
Autism nicked my schizzle!!!!!
(I have a way with words from time to time)
And it really did (and still does) feel like that. For 4 decades I regarded myself as perhaps quirky and eccentric (there was no denying that I wasn’t totally “conventional”) but basically just absolutely ordinary. I imagined that other people perceived the world in the same way I did because I didn’t know any different, and I put any differences in their behaviour down to the fact that they were keeping quiet about their struggles, just as I was, and the notion that they were all just stronger than me and could cope with these things better than I could.
This is, of course, one of the reasons it took me so long to discover that I am autistic – only when I got to the point where I couldn’t sustain the act, and some of my more extreme autistic behaviours emerged rather dramatically and regularly in front of other people, was the subject actually broached.
And I still feel that a large part of the discovery is actually not discovering what I’m like, because I already knew that, but discovering that there’s a whole load of people out there who perceive the world differently from me. People who wear scratchy clothes and don’t notice, who naturally sit still on sofas, who have easy spontaneous conversations they haven’t rehearsed, who don’t think eating croissants with a fork is much more comfortable, who just go shopping and feel pretty much the same when they leave the shop as when they go in, and who can go away from home and live communally for a week without ending up sick or in tears of exhaustion or rage!
This is mind blowing! All this time. All these people. Just living in the world. Going about their business. And experiencing the world in a rather different way from me. Not needing to take days to recover from things. No wonder they can do jobs and achieve so much where I can’t. They’re not stronger than me after all. I’m not as weak as I thought I was. I just perceive the world in a different way from most people. My normal isn’t as normal as I thought. After 4 decades I’ve discovered my normal is actually something slightly different from most people’s!
It’s quite a discovery to have made! I’m still somewhat astonished by it all!