I Am Autism

I am all your fears multiplied 

I am all your senses intensified 

I am all your blinding lights in agonising magnification 

I am all your irritations quadrupled 
I am all your needs made life or death 
I am all your demons emboldened 

I am all your plans unstuck
I am all your sleep disturbed
I am all your time stolen 

I am a constant storm 
I am too much wind, too much rain
I am too cold, too hot, too buffeted  

I am “look at this”, “look at that”, eye for detail, nose for detail, “food’s gone bad” 

I am your calm denied
I am honesty at all costs
I am fairness at all times 

I am all your conversations distracted 
I am your tiredest morning every morning
I am at once too much and not enough 

I lock you in when you are out and release you when you are in 
I am too full of noise and too quiet 
I am not so much different as more 

I am the warrior within; the inner strength you cannot see
I am a desperate thirst for knowledge, for proof, for fact

I am all you are always 
I am never apart from you

I am the wild stallion you tried to make cart horse  

Let me run and you will see 

I am Autism 

MELTDOWN: “Greater Force” versus difficult 


“Meltdown” if you’re autistic is the culmination of too much coping, too much stress, too much internalising; too little opportunity for repair, too little understanding, too little time being true to one’s needs.

It’s a powerful rebellion of the inner self, of the true needs of the autistic person. It’s a reaction, a cry for help, an explosion. It’s a need for release from what’s going on now or what’s gone before. It’s an immense sensation that something must give, must break, must end. It can manifest as a strong – if not totally overpowering – need to escape. To rip a hole in this current life and run away.

There is often a sense of a Greater Force beyond our control creating havoc, making life especially difficult and of life conspiring against us.

It’s not a hissy fit. Please don’t say it is. It’s important.

What it really is is an inability to see soon enough that we’re asking too much of ourselves or that others are asking too much of us.

We might react to an immediate environmental or personal impact upon us. We might scream that life or a person is picking on us (it sure as hell feels exactly like that) but what it really is is too much expectation. Too much difficulty. Too much pain. Too much…

Like a belly so overfull it makes you vomit because there simply is no room for anymore, the only thing to do is let it all out or implode.

I see myself trying to carry too much – metaphorically and literally. I watch as I drop things, as I disappointment myself, as I hurt myself, as I become overwhelmed.
I feel a rising tide of everything pushing against me and I rarely remember to stop soon enough – or I am simply not permitted to stop soon enough.

There is no Greater Force conspiring against us.

It’s just too much. It’s too difficult.

But goodness only knows what the answer is.
Another world? Another time? Another set of rules?
Another way of thinking about difference and need?
Some kind of permission for better clarity from autistic people for autistic people and a language based on acceptance and empowerment that allows for difference to be accommodated and embraced is certainly needed; that allows for us to feel safe to say we want change, we want you to change and we want to cope on our own terms. And an end to this feeling that we were not made for this world or that we should try so very hard to not be ourselves when we and the world were very much made for each other.
It’s okay to say it’s too difficult. It’s okay to say your way is not my way. It’s okay to say I have to do a, b or c in order to survive.

But it’s not okay to be in a place of meltdown not knowing that all it was was too difficult, too unsuitable, and we should have been

allowed

to

Stop.






Flat on the Mat

I’m tired from things I had to do – that you didn’t make me – you were just being you.

I’m all used up from pushing so hard – to get there, to be there, to go the nine yards.

Again and again the pull of the norm; the done thing, tradition, weathering each storm.

No one knowing how unnatural it felt to never have nothing but what’s in my head.

So quiet now is needed more than before to make up for years of locking its door.

Taking what’s needed like a famine starved hound and taking extra while hitting the ground.

How long can I lie here? Can it please be forever?

I don’t want to be like That again ever –

That busy and shaky and buzzy and tired, and hopelessly desperate because I’m not wired

Like you and like them and the ones who set rules. Who mingle in parties and offices and schools.

Applaud me for trying, for getting a first on how to behave though it made me feel worse.

But please understand it took more than too much and I’m not even me now it sapped me such

That here I am begging: “I can’t carry on but I can’t even tell you because it feels so wrong – To crave that much quiet and empty and slow.
And will you understand?
I really don’t know.”

One Thing Only

I went for physiotherapy this morning. The outcome was good (well, better than expected). The physiotherapist is lovely, and I know her well enough to not be too daunted by the mysteries of what to expect. My husband drove me and picked me up and the journey was only 10 minutes. Yet I am exhausted. It took over the whole of today and I’m still replaying and relaying the experience. I worried about it overnight, worried about what I would say, what I would wear, about someone else seeing and touching my body. I am exhausted from socialising and from talking about myself – I find it really hard to take up people’s time and for the time to just be about me. I struggled to get back to normal and complete the rest of the day, to cope with work and parenting and this evening’s mealtime. I just wanted to go to bed at midday and say ‘I’ve dealt with something today!’ And yet to anyone else this is just an appointment amongst many in their diary – get over it. But every other conversation and decision for the whole of the rest of today has been an immense strain and had me close to shutting down. I even said to my husband ‘I’m not sure I can talk to anyone else today.’ 

This is me. One thing dominates and continues to dominate until it is over and I have recovered.  Good or bad. I do my best to keep going but the need to recharge is not a choice. It is a need. It’s how it is. 

Anxiety is a Bastard 

Anxiety

Anxiety prevents me from speaking my mind. And on the rare occasions I do, it prevents me from backing myself up, despite being bright, opinionated and strong-willed.

Anxiety prevents me from entering conversation that means a great deal to me, about things I have some knowledge or experience or a great passion for.
Anxiety stops me saying words I want to say to you, to him, to her, to them, to the world. It holds my tongue.
Anxiety prevents me from standing my ground. From standing up. From being proud. From being counted.
Anxiety does not let me be the person on the surface that I am inside. It does not let you see me, it’s does not let you hear me. It does not let me fight.
Anxiety does not let me give you everything I want to give you nor everything you want to give me.
Anxiety makes me look weak though I know I am strong.

It makes me look cold though I know I am warm.

It makes me lose words though I know I have many. So, so, so, so many.

It makes me hate me though I know I am loveable.

It makes my world small though I know it is vast.

It keeps me awake though I know I am tired.

It keeps me active though I want to relax.

Anxiety steals, and breaks and hurts and lies.

Anxiety is a bastard.
An absolute bastard.

I will never beat it. But I know it is wrong.

Life in The Wind Tunnel

I don’t mean to be self-indulgent but I feel this needs to be said. It’s something I keep not saying completely but it’s so huge. 

As 7th April is my 3-year autismaversary and represents the culmination of 3 years of deep thought, realisation and listening to others who deserve a darned site more understanding, I need to say something apparently simple and maybe obvious but incredibly important: 
When you’re autistic, you don’t have a choice about what bothers you.

Life blares at you and glares at you. Some things torment unbearably and create uncontrollable inner turmoil but you are told to “suck it up”, to “just don’t let it bother you”, that “it’ll soon pass” and other unhelpful crap. Or told to look at things from others’ perspectives when that’s all you’ve been doing all your whole bloody life long. More sympathetic people give you well-meaning hints about mindfulness, about coping, about letting go or about what works for them. Mostly about not being you. 

But. A lot of autistic people instictively know how they will feel safer and less tormented. They will have a safe activity, a safe sound, a safe place that they will escape to or attempt to escape to. We effect habits to release ourselves often without knowing we are doing it. 

My safe space is my mindfulness, is my coping, is my letting go. I’m clever enough to have worked this out, worked on it and solved many of my life’s coping problems, and gradually created a personalised fix for overload and anxious thoughts. It is what works perfectly for me and my inbuilt feeling of needing to escape, and it brings the greatest peace, joy and healing. It’s my pills, my alcohol, my sweet tea, my hug, my long hot bath, my counselling session, my night out with the girls, my retail therapy and my big long scream at the world all rolled into one. I know how to fix myself, I know how to keep going, I know how to find calm and peace and I am so so happy that I have found self-acceptance and a way to be me, safely and naturally. 

And breathe… 

But if my safe space and time in it is interrupted, I am distraught as if I am being denied oxygen. I literally breathe in short shallow breaths. My heart beats too fast in an attempt to cope. I am massively affected. 

I don’t choose to be massively affected by having my safe space invaded, I don’t choose to be completely beside myself and panicky. I don’t have a choice. I need a safe space and I need peace. When it’s compromised I can’t cope. It’s like cutting off my oxygen. Really. This one’s not something to meditate through. 

I’m not like everybody else. I am highly highly tuned to everything around me. I need somewhere where I can tune out from humans and society and tune into nature and wildlife. Autistics need their thing – whatever that is – that they can tune into like an empty engine being hooked up to fuel, like a dry desert lying in heavy rains. Like a starving baby being reunited with its mother. Each one of us is different and needs a different thing, but we need something that lets us out of the constraints of a non-autistic society. 

It’s as important as air and water, and without this I suffer from Safe Space Famine and become agitated. 

Something is giving me palpitations right now, it’s making me feel unsafe, invaded and rather rattled. There’s nothing I can do about it and no one I can complain to. I’m lost and alone and pacing and wondering if this will be the time I fall. 

It’s the story of my life. 

Coming down from a bad couple of hours one day this week, when everything began to feel more lucid again – in fact, perhaps the height of lucidity as everything fell back into place and the latest storm cleared – I explained being me to my husband:
‘It’s like having vertigo and having to spend your whole life always living on the edge of a cliff. Always terrified. I know where I will be safer and suffer less. I want to be safer and suffer less but I’m not allowed to move away from the edge and be calm.’ 

And while I see this as an abnormality in my brain if you like, I want to accept it and live with it. I’m not going to change so I need my environment to change. I need to be allowed to move away from the edge instead of fighting vertigo or learning new climbing techniques on top of everything else I battle and absorb and internalise. It’s as if I accept me but life around me doesn’t. 

I said it might be difficult to understand if it’s not something you feel yourself but he said it explained very well what he saw me going through on a regular basis. I think he is beginning to see that getting away from the edge is the best and the fairest thing. 

Of course he can’t completely understand. The kind of chronic anxiety, sensory onslaught and inability to filter things out that I suffer from is not easy for most people to really process. And the needs I have are not easy for most people to understand: 

No sudden noises, no surprises, no practical jokes, no telephones ringing, no unexpected visitors, no unexpected noises or voices when I’m alone. No repetitive or constant noises that overwhelm or compete with other sounds. 

No throwing me into situations I haven’t prepared for. 

No invading my safe space. 

Space invaders not welcome. 
Autistic people need to be allowed to choose their safe thing, their survival technique, their way to live just as everyone else chooses not to live in a wind tunnel being pelted with rocks with heavy artillery noise firing around them all the time. 

“Hey just get a stronger hair tie and wear a suit of armour and some ear defenders! Suck it up! Learn to live with it!”  

No. Get the hell out of the wind tunnel.  

Am I making any sense? 

As if I Shouldn’t be this Way 

My head is fine – I checked: it’s good.
I tapped – knock, knock: knock, knock on wood.
I wondered what you thought was ailing:
Too honest? too thoughtful? too dreamy? too feeling?

I made a list. What is the worst?
How am I wrong? What should come first?
Too Not Like Everybody Else, but how?
In subtle ways that hardly show.

Fitting this world while I’m told I’m not.
A puzzle piece, apparently, not finding a slot.
You’re puzzled by me and you think it’s a shame.
But it’s just your brain not getting my brain.

Language chosen to hurt and label.
To create a discourse: ‘You are not able’.
Words not chosen with thought or care
Problems invented that are not there.

‘Don’t be like you, be like me,’ you say
As if I shouldn’t be this way.
But this way is me. Work harder to like it.
Instead of teaching me to fight it.

Take your “Disorder”, your “Disability”,
Stick it up your arse. Don’t apply it to me.
Years of burn-out now ensue.
From thinking I should be like you.

I own my mind, my thoughts, my brain.
No two humans should be the same.
When space and light and peace are mine,
I really couldn’t be feeling more fine.

A blend of individuality that makes up me.
I only see fault with society.
Don’t bother that you can’t make me fit
That there is my problem. That really is it.

Surviving this negativity is quite a feat.
So
Knock knock.
See? – I’m whole and complete.

Autism awareness month (April) is upon us again. For hundreds of thousands of autistics – particularly we adults who are able to “own” our own autism and do not have to suffer at the hands of well-meaning (and not so well-meaning) non-autistic “experts”, the Autism Speaks awareness campaign is a harmful and insulting campaign with unpalatable ideas of a cure, and focusses on insulting and distressing notions of faults and fixes rather than the education and acceptance that society needs.

Please don’t be “autism aware”. Please don’t “Light it up blue”. If you do, you clearly still have A LOT to learn. Please educate yourself with the words of autistic people themselves. We are all different and we have a lot of experience to pass on.

Autistic Woman and the Public Persona

I’m out, I’m dressed, I’m bright, I’m smiley. Eyes twinkling with mascara and positivity.

I’m active and alert, acknowledging, nodding, talking. I am efficient. I am cloaked in my efficient persona. I have rehearsed this. I will smile and I will be genuine because I am set up for this.

I’m not fake. This is me. I am real. It is not a mask or an act – but it is an effort and it is only part of me.

The other parts of me are quiet and thoughtful and closed off:

The watchful me, the imaginative me, the creative me; the me that likes to plan and plot and design and reorder and construct and renew and appreciate. The me that needs space away from others to think straight and to survive.

The recovering me, the aching, sore-bellied, groggy me; the me that pushed to make life easier for others and drove herself on adrenaline and internal pep talks and constant alertness to get things right. The me that gets ill because society doesn’t run itself for me. The me that pops beta-blockers in the night to try to cope with all the replay and self-deprecation and the panic about what’s to come and what went before.

The live-wire me, the musical, singing dancing, gardening me; the me who forgets the time, gets lost in thrills and who has a unique surge of productivity that sits so badly with the conventional work day. The me who loves what her imagination and inspiration comes up with.

I am so much that is not bad but that grates painfully up against the social order and that has its own clock.

I will fit. I do fit. I make myself fit.

And then I hide, I curl up, I crawl, I don’t speak. I think and I think and I think.

And then I lengthen and strengthen and stretch towards a life I know I can only take in bites. And boy do I bite it.

And that’s how the public persona survives. Like a symphony of contrasting movements and dynamics and all the rests in between.

Love the autistic woman’s public persona for she has worked hard to perform it for you. But love the whole of her, love the composition and the composer, the way the magic works and the how the best movements are the ones you don’t notice on the first performance.

How to Live a Life

I have been struck by crushing and excruciating exhaustion. Completely floored. I felt it coming and fought it. I shouldn’t have. Now I have to consider each move, each step, each job and each rest. I have to allow myself to surrender. 

Plans? No. None of them. Cancel everything. 

I’m never completely sure what’s going on in my body but sometimes it says “enough” and “no”, and it’s always after trying to act like a regular person, after anxiety, after peopling, after a run of events that other people would find normal but that I find consuming and often scary – or at least worrying – and that use up so much of my thinking. My life, my energy, my brain, my thought process are all geared towards what is expected of me next and I drown in a combination of planning, organising, imagining, visualising, fearing. Downtime, breaks are futile because What is Happening Next is looming on the horizon. Rest can only come when there are gaps. 

Right now I need a big gap. I need quiet, space, peace, open spaces, periods of silence, freedom to move instinctively, a break from expectations, from my own standards. I need to feel security from intrusion. And that includes unexpected noises or things breaking into my safe space.

January is a particularly difficult time after pushing myself repeatedly to be all things to everyone when I’m a person who needs long and regular periods of still and quiet and lost-in-my-head-ness. 

I know who I am and it is not this person. 

Who I am has been pushed to the side, smothered, hidden under a huge pile of “Being Normal”* 

Every wadge of “Being Normal” that is piled on top of all the others I haven’t managed to escape from yet crushes me a little more until I find I am shouting for help. Wanting escape. 

In bed, I am dreaming of intrusion, fear, expectation, of eyelids unable to open, of calling for help, of feeling trapped. 

It’s not that this world was not meant for me or me for it, it’s just that variations are so difficult to live by when they are so poorly absorbed by the latest ideals of how to live a life and my own how to live a life doesn’t suit those who rely on me. 

How much of this is anxiety? How much of this is from years of trying to fit and fighting my real self? How much of this is autism spectrum? How much of this is middle age? How much of this is a commonly-felt dose of post-Christmas, midwinter, light-deficiency tiredness? How much of this is sadness and frustration that I’m still not living the mellow, creative life I’ve always dreamed of? How much of this is ridiculous perfectionism and unattainable high standards? 
All of the above. 
There is a pill. It’s called accepting variations from the norm and absorbing them into society. 

*I use the word “normal” to suggest I and others like me are not normal. But I use it tongue in cheek. We are all human. We are not freaks of nature. Neurodiversity is about the variations within the human and is normal. 

Perpetual Tigers

shutterstock_322463783Tiredness leapt upon me and pinned me down. “You shall neither rest nor achieve,” it growled. It had come to take advantage of a body and mind left vulnerable by Anxiety who was still watching me from the darkness, plotting and sharpening its claws. 

Fighting for their turns to tear at me; to feed from my body, their potency has grown as I have weakened. They have sucked away the vitamins and minerals I need for energy, thought and deed. Anxiety at my head, my back, my heart, my belly and my skin; Tiredness at my lungs, my muscles, my brain matter and my bones. Clawing, draining, claiming me until I fear I no longer belong to myself. 

Not vultures politely waiting for the peace of a spent body, but murderous carnivores attracted to a living being with fight and the potential to rejuvenate. Parasites slowly depleting and giving nothing in return. 

The weapons to defeat these monsters are complex and many, yet they are short-lived. They are made of paper and candy and smiles, of dreams, of songs and laughter. They can all too easily wash away in a storm. But we who have learnt how to, fold them, sing them, dream them up, write them into our lives; can conjure pictures with no monsters, and pictures where monsters are defeated. You cannot turn away from these monsters, they curl like a snake around and around but if you squeeze your eyes tight shut, balloon your chest full out with air, and hold your weapons close, you can see beyond them to all that you have that they cannot hold; all the space that they cannot fill, all the good dreams and good words. You can see sleep and a calm body. You can see paths to the light and the future. Good things are there if you can reach them.

They will come again, the monsters, they fight me still because they are part of me, within me. But I win. I will always win. Scratched, scarred, exhausted and traumatised, I always make it out alive into the light where my words and my smiles and my dreams are my own.  I own my body – even the scars.