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Autism: Noise hurts me. But not like you’d think

A lot of the “problems” of autism – or, more to the point, autistics trying to operate in a neuro-typical world – could be put down to timing rather than incapacity or incapability. I see that I react in much the same way as other people and I feel the same things as everyone else but I feel I’m operating on a different time scale. Processing can take a while if there’s too much to take in – it’s not a fault: I think I am taking in more so I see it as a blessing but it can make us look weird or unresponsive because we’re being distracted or over-stimulated while we take in detail.

Empathy is a good example of this confusion about whether or not we’re reacting “correctly” and I think I’ll save that for another post.

What I’ve noticed about myself is how sounds slow me down. Other autistics talk about sounds hurting them. To me they hurt emotionally, they hurt my operating system; they don’t hurt my ears in a physically painful way. Many other sounds don’t offend at all they are simply distracting. But some sounds irritate terribly. An irritating noise to an non-autistic can be magnified in my ears. Certain pitches are overwhelming. I am disturbed by scratching noises or skin rubbing together for example. Being distracted slows me down and I find when I’ve recovered I’m out of step. I’ve spent my life avoiding holding my hands over my ears and drawing attention to myself but now, at home, if I’m upset I will cover my ears.

So I wrote this thing

I Hear That Too.

‘Yeah, I hear that too. It irritates me too.’

Yes but I am consumed by it.
I am paralysed by it.

It taunts me.
It prevents me.
It upsets me.

I have lost my concentration.
I have lost my train of thought.

I feel under attack.
I feel hurt.
I feel offended.
It feels deliberate.
It feels cruel.

When it stops, it will haunt me.
It will ring like bell
It will repeat like an echo.

I will wonder ‘Why?’

I will wait.
I will try.
I will feel bruised.
I will lose time.
I will give my all to get back to where we were.

I will be waiting for it to happen again.
I won’t be the same.

No matter what you say.

‘It was just a noise. It’s over.’

Is it?

Maybe in your world.

Autism diagnosis: a slow, lonely crossing through the mind

Often, it’s not until a journey is over and you’re looking back at the wild sea you’ve been crossing that you realise what storms you’ve been through. 

This last 15 months has made me tired and withdrawn. I’ve had to deal with a different version of myself and life events through an autism diagnosis, and alone in my head I’ve had to take on a past loaded with things I’d hidden away for my own safety. There were lots of memories I was very reluctant to have visit me and I was cross with the past for hurting me. 

I was also (and still am) cross with and insulted by textbook language about autism and autistic people. It’s more than a little painful to hear that you’re thought of as broken, disordered, imperfect, and that something “went wrong” when you were forming from a bundle of cells years ago. Incapable of this, bad at that, struggle with whatever, can’t feel, can’t understand. Lots of subjective thinking based on non-austistics’ limited analysis. I didn’t fit it and I was confused. And yet I do and feel things I’m being accused of being unable to do! I even took on a few new traits for a while because I was so consumed by the dominant terminology and assumptions. No wonder people shy away from diagnosis and would rather convince themselves they are neuro-typical! 

It was only when I found writings by intelligent, independent, adult women from inside an autistic perspective that I found something I could relate to. No one was trying to tell me what I was and what I wasn’t anymore, and, importantly, no one was trying to undermine me with suggestions of not fitting. We weren’t lacking – this was something to be proud of! 

Dealing with things is important; it can stop you going crazy and eases the strain on your health – and it’s only fair on others to try to untangle complicated things which might be a strain on relationships – but the process is unsettling and often fraught with invisible mental battles and old wounds to be reopened and examined. It’s painful going through things alone that no one else can see. 

Like grief, it’s all about getting through, plodding on, and fighting the tide of everyday life on top of the swell of emotions, loss and sadness. Life has changed, the picture of me in my world has changed – just as it did when our father died. 

Of course, unlike bereavement, it hasn’t been all about sadness, but it has involved a lot of looking back and visiting painful memories. And there is a sense that something has gone. And from what I can gather about autism in me and others it seems the condition causes memories to linger excessively and makes “moving on” more difficult. 

I feel as if I have been swinging  monumentally between a fairly normal, average outward life of a wife and mother with grown-up responsibilities and the usual challenges of juggling finances and practicalities and the hidden world of my chasms of internal wranglings filled with such an emotional cacophony that there’s been little energy for anything else. It’s like a rocky landscape that appears all one from a distance but close up it is craggy and there are inaccessible hidden depths. 

It’s not been all about thoughts and memories; much of what I have been through has been about feeling stunned, wrecked and exhausted. There’s been a greater need than ever for quiet, space and escape. I crave a sensation of emptiness or perhaps a single focus instead of this jumble.

I often think I should have been offered counselling to help me talk my way through this but, on the other hand, I know that one more person to deal with may have been too much for me during this process. People’s words, faces and actions fill my head long after their company – they become yet another thing to process. 

So I’ve done this alone and I have felt incredibly isolated. 

It’s lonely, it’s lonely, it’s lonely; no one knows, no one can help me, no one understands.

But I feel that this more recent sense of looking back over the last year or so means that maybe I’m coming through it now, and maybe the lone path was the right way to go. 

At least I took it. At least I went. And like finding sea legs, I think I’ve found my autism legs. I often wish I hadn’t gone, I often wonder if it was worth it. But I can say now, 15 months on, that on the whole it hasn’t made life any worse (some things are worse, some things are better. The bad stuff is mainly to do with other people’s hurtful ideas about autism) so it wasn’t a bad thing to do. 

Detachment 

There is a phenomenon on social media I think I will call ‘My input is more important than your feelings’
(I’m saying it now because it hasn’t happened to me for a while).
I call it a phenomenon because I don’t see it in face-to-face interactions – or at least not in the tactless way I see it occur in places such as Facebook. 

It seems to be driven by not being able to see how much you’re hurting someone or how you’re digging a hole for yourself. I think about it a lot – how the Internet can allow us to be both more honest and more hurtful, whilst, ironically, giving more time to think about what we’re saying. 

So what is it that makes us more tactful when we’re physically with someone? It’s clearly not always about having extra time to think. 

You don’t have to answer that. You can nod, scratch your chin and pour more wine instead. 

Diagnostics 

Imagine how it would have felt…

Imagine if instead of feeling lost and broken and incapable…

Imagine if instead of being labelled obstinate, reticent, lazy…

Imagine if instead of wondering why life was so physically difficult… 

Imagine if lots of wrongs hadn’t become one diagnosed wrong but instead… 

Imagine if instead they/you/we/he/she had said ‘because you are autistic it is very likely you are able to visualise well, it is very likely you are able to plan well, it is very likely you have an eye for detail, it is very likely you are more able than you thought, it is very likely you are better at maths than you realised. It is very likely you are really rather remarkable and very capable.’

Imagine that

That would have been better, wouldn’t it? 

Quiet!

Ugh… You know when being a human winds you up… ? When society just seems somewhat childish and obsessed with ridiculous stuff… ? and language is just a lazy smudging together like Grexit and Greconomy ? And people who are supposed to be properly grown up are obsessed with stupid stuff? 

I love getting older and not being an airhead anymore but I also hate getting older and seeing how the world and the media are run by tossers and celebrities. Why are we obsessed with celebrities? They are just vain versions of ourselves. 

Why is it that those who are noisier about their achievements are held in higher esteem? 

All that. Ow.  

Anxiety: It’s not me; it’s you. Sorry. 

When my anxiety is getting the better of me I feel I need to say everything, put it all into words, make my own sense of it and be heard. 

Every part of this need for openness is problematic:

1. My anxiety involves other people and their actions so to talk about what is upsetting me is to criticise others – or risk making them feel they are being criticised. This results in others being defensive or hurt and my anxiety escalating. And people mistake silence for rudeness so I can’t ever get this right. 

2. People want to give me answers and solutions or explain what is going on and what is real and what is not real. This makes me more anxious and insults my intelligence. I know what is real. And I know about anxiety. I am an expert. 

3. People tell me not to worry. There are not enough hours in the day to explain why this is ridiculous but a comment like this will make me unlikely to share my fears with a person and instead make me feel ill. (Or if you’ve caught me at a particularly bad moment may result in colourful language.)

Most of what makes me feel anxious can’t be stopped. Some of it can be avoided to a point, and my self-awareness and ability to assess things enables me to judge what I feel able to put myself through at different times and in different situations.

4. People offer fixes. When you have lived with anxiety all your life and have been through what I have been through – you have researched, experimented and grown wiser – you become weary of “fixes” and weary of trying. You come full circle and your knowledge is deep.
‘I have found what works for me and what doesn’t, but thank you anyway’ doesn’t cut it for some because here I am still complaining about anxiety. Clearly this indicates to some I haven’t found what works and they feel a need to help. Really: thanks but no thanks. 

The truth is I don’t want to complain about MY anxiety, MY “problem”. I really want to complain about the world around me because I have found what gives me peace but I’m not always allowed it. Instead I must internalise the feelings and do the anxious thing. 

Currently I don’t know if and when our back garden will go back to being peaceful ever again and that is causing me to worry and to pace. The uncertainty and unpredictability of other people has always been distressing for me, and the responses required from me are exhausting – as too is the “put up or shut up” it often seems is required by everyone. I find the best way to heal and recharge is total withdrawal, and being able to escape from man-made noise is important for me. If and when I get that, I feel lost in a delicious calm. It’s my self-prescribed medicine, it’s what works.  

Several times every day, I swallow a rant that is playing on my lips, I hold back an opinion that might result in an argument I don’t have the energy for, I decide again and again and again that I can’t put my needs above others’, that I can’t voice my concerns, that I must disguise my discomfort. This in part is to do with being a woman, a mother, an adult, a responsible member of society. It’s about caring about others but it is also connected to my anxiety, and for me it is pretty constant and I wish I could retreat to my ‘what works for me’ more often to avoid this anxiety. Instead, though, I must keep on, knowing how things should be and knowing I can’t change them – and occasionally allowing myself to blurt out how anxious that makes me feel. I should be allowed that at least, surely? 

Night Picture

10.30 at night, I sit alone outside on the ground in bare feet and watch the clouds come and go over the moon. The breeze is warm and strong, and the moon seems to ease in and out in long breaths. Instinctively I begin to breathe in deeply each time it reveals itself – at first in wonder and then in harmony. Although nearly dark, the sky is still pale blue, and the very special combination of light from a full moon and light from high summer gives the clouds extra form and depth. Their edges glow bright and white. 

For the first time today the temperature is just right for me and I briefly wonder how easy it would be to sleep outside all night. 

To my right, Venus and Jupiter shine close together like two bright stars and above my head an aeroplane passes over like a lazy shooting star. A blackbird calls out one feeble last reminder that this is his patch, and as the lawn slowly disappears into darker and stronger shadow, I imagine hedgehogs and baby toads, and I enjoy losing the view of the structures and planting I have forced upon the garden – and all the thoughts of work still to do. I am simply in the night and with the moon and clouds. I feel small and weak and ineffectual and it is good because that is how it should be. 

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