Too Loud

53-2016-12-29-22-14-42I sat in the masterclass, trying to hear what the teacher was saying to the student, straining my ears against the noise coming from my left. A woman who was sitting a couple of seats away from me was taking notes – with a pencil, and the sound of it scratching on the paper was getting so loud that I could almost hear it drowning out the voice of the teacher. I glanced round the room to see whether anyone else had noticed, but if they had they were giving no indication that they were the slightest bit worried by it.

I’ve noticed that since I’ve been in burnout my sensitivity to noise has increased dramatically and my ability to filter out extraneous sounds has declined substantially. I’ve always had issues with background noise, and usually I’m working really hard to filter out the things that I want to hear from those I don’t – this takes a huge amount of energy and I can only usually do it for a finite amount of time before some sort of meltdown occurs.

Interestingly, the noise in the eating place last summer (see The Discovery) was one of the main contributing factors to my eventually being identified as autistic. Not being able to cope with the noises of food, plates, eating, talking and so on AND then having to eat my own food was one of the big triggers that made me seriously anxious and I ended up figuring that it was so stressful being in that environment that the best thing to do would be just to give up eating while I was there because the whole food experience had become so very difficult. Of course, that wasn’t a great strategy, and explaining my difficulties and being given dispensation to eat somewhere quieter was a rather more realistic approach!

Eating noises in particular are something I find very hard to cope with and, as I’ve seen memes on the internet, I’ve gathered that there’s a name for this – misophonia – which is apparently something else not really recognised by medics. So I have a double problem – I can’t cope with quiet eating situations because the individual noises are too stressing, but I can’t really cope with noisy ones too well either. Catch 22. Maybe I should just accept that communal eating is a jolly unpleasant experience and stay away from it completely? Or maybe a more sensible solution might be to limit it and be aware that it takes extra energy!

But it’s not just eating. We don’t have a separate kitchen at home, just an area at one end of the sitting room. When my husband is cooking, particularly if he’s frying anything, the sound of the stuff in the pan can sometimes quite literally hurt my ears. I also get similar problems with cutlery clanking on plates, or pots and pans being rattled and so on. Even when there’s no cooking going on, I sit there waiting for the fridge to stop making a noise so I can get some peace. I really would be the world’s worst kitchen worker!

Usually I manage to cope with most of the noises in the everyday world. Like bright lights, they exhaust me and I need to recover from them. Like with light I’m trying to figure out a way to dull them somewhat, especially now I know that I’m not hearing the same things that other people hear (not because there’s anything wrong with my ears, but because the way my brain processes sounds is rather different). Unlike with light it’s more difficult. Wearing sunglasses is an easy adaption – I’ve worn glasses since I was a teenager and have to wear them anyway to be legal to drive the car and to be able to see. Glasses are no big deal.

Earplugs or headphones are an entirely different matter. I can tolerate having earphones in for a short while, but I’m permanently slightly uncomfortable with them in because of how they feel in my ears. Apparently there are people who can sleep with earplugs in – I don’t know how because they drive me nuts after a very short time. I have worn earplugs at airshows and so on, but the sound of my own voice is then totally unbearable and I only keep them in for the noisiest jets. I would also feel very vulnerable out alone without being able to hear what’s going on around me, because I use my hearing so much as a safety mechanism – maybe the advantage of hearing so much of the background noise upfront is that I notice things like footsteps behind me or the whistle of wind in bicycle wheels when I’m about to cross a road, or similar. I haven’t yet solved the noise problem – that’s very much a work in progress!

And, of course, sound has the additional problem over sight in that it isn’t just the filtering of noise that’s the issue, but a lot of the time coping with sound requires the auditory processing of language too. It has now become obvious that spoken language doesn’t come naturally to me and filtering out conversations from other conversations is something I’ve always found really hard work – which is why I’ve often found myself at parties following a conversation that I’m not even part of and when I’m then asked to contribute have had to ask what has just been said as if my hearing was a bit dodgy!

I’m fairly confident that when I’m recovered from the current burnout things will get a bit better. During most of my life I’ve generally preferred having music playing to having silence – music is a huge and very important part of my life. Interestingly, sometimes, background music (as long as it isn’t too loud) can be a steadying influence on me when I’m surrounded by talking and conversation. It feels to me as though it enters my head on a different channel from conversation – it goes straight in and has meaning instantly without the translation mechanism needed for words. However, when I had the 2001 burnout I couldn’t cope with music at all and craved total silence most of the time. This time around it hasn’t been quite as bad, but all my volume controls have been turned right down and I need everything very soft. On bad days I can’t watch the television with sound and simply put the subtitles on and read them instead. I have managed to play in the occasional concert and the music itself hasn’t been too bad, but the applause at the end of the show is very very painful at the moment. Again, I’m hoping this will improve.

Of course, living in a flat with 3 lots of neighbours is really not ideal in this situation. And the fact that I’m only getting out about once a week means I’m spending an awful lot of time listening to the neighbours’ doors squeaking, their showers running, the noise they make in the corridor outside, the car alarms in the car park below, the dogs barking, and worst of all, the noise of the primary school kids arriving in the morning (the primary school is very close to our block of flats). The voices of babies and small children produce the same effect that knives clanking on plates or people chewing or pencils scratching on paper do. I’m guessing it’s something to do with the frequency of the sound or the structure of the wave or some similar thing – maybe I’ll research it one day, but for now it’s just simple observation.

And, like everything else, now I know how much energy I’m using to cope with filtering noise and trying to focus in on what I actually need to hear, I’m going to have to adapt things a bit. More recovery, more time spent in silence (or the closest I can get to it, given my living circumstances), more time on my own. We’ve also discovered how to disable the entryphone to our flat (nobody ever visits unscheduled anyway) and we now have all ringers on phones permanently turned off. Social occasions will have to be prepared for, recovered from, and rationed to things I really want to do. Having to cope with the sheer amount of noise in the world is yet another thing that drains my energy and causes exhaustion, overload, and sometimes meltdown.

Normal Ears

12-2016-12-15-17-49-17A 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!