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 

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. 

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.

Twenty (ish) Reasons Why I can’t Possibly be Autistic*

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  1. I’m not a boy
  2. I’m not a child
  3. I can and do empathise
  4. I’m not a genius in any field
  5. I don’t have a savant talent
  6. I like people
  7. I don’t rock, flap, jump or visibly stim
  8. I don’t have obvious meltdowns
  9. I shower and wash my hair every day
  10. I don’t have an obsession with space like the boy I knew at primary school
  11. I like fashion and think about what I wear
  12. I have brought up 3 children
  13. I don’t hit people
  14. I could talk and communicate at a very young age
  15. I’m not fussy about food and I love strong flavours
  16. I understand sarcasm and don’t take everything literally
  17. I am perfectly capable of accepting other people have a different point of view based on their experiences (even though I often wish they wouldn’t!)
  18. I love hugs
  19. I love hugs
  20. I love hugs

Hug me

(Make sure you’ve washed first)

Okay now leave me alone for a while ūüėú

What are yours?

*and yet I am

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. 

Ghosts

img_3545There. Right there. On that spot. We stood right there where the worst of the worst memories hung in the air, lay on the ground, and circled around. I told my little girl nothing. I teased her with taking phone photos and showed her the leavers’ photo from my year: 1986.

How many people remember the floor of their school corridor 31 years on, I wonder? How many people picture it on a regular basis? How many people had to go back years later and stand on the same spot outside the very same room. She has the same tutor room I had. You couldn’t make it up.

It took me three weeks to ask her: ‘What’s your tutor room?’
‘Room 1,’ she replied.
I’d delayed asking her as if I knew already.
I shared some brief memories but shared no pain.

We met her outside. I did jazz hands and was allowed a hug. Cheerful and chatty, we were early and hung about. So much had changed and yet so much hadn’t. The floor tiles rose up to greet me, tease me, loaded with history, with DNA, and I remembered the sounds of 1980’s shoes echoing, of voices egging on my tormentor, of books and folders slapping hard on the cold surface. I remembered her words and my reply. I remembered trying to punch her ankle and trying to shout ‘Bloody bitch!’ as she turned and left me spreadeagled amongst my belongings on the bruisingly hard floor. But my voice came out reedy and tight with self-pity or shock or from the beginnings of tears. I’m not sure which. I just remember I felt weak, ineffectual, beaten.
I didn’t cry though. I went straight into Room 1, collapsed in my usual place at the table I shared with the some of the other girls in our tutor group, and ranted a little. I was pissed off, confused and stunned.
It never happened again. She’d done it. She was pleased with herself perhaps or maybe she got into trouble for it. I never reported it, though, never complained. Maybe someone else did.

The torment didn’t stop though. The name-calling, the looks, the bitching, the drawing other girls into her campaign against me. The constant, daily chipping away at me. I was unaware that the emotional abuse was bullying too. I just knew I hated it, hated her, hated school, hated myself. I feared my every move, my every garment, too much make-up, not enough make-up, too thin, too tall, too clever, too musical? Which was it she hated the most? Who else hated me? I had my suspicions. The subtle abuse continued too: bitching loudly in groups about me so that my closest friend would come and tell me the worst. I found out I was short-sighted that year. I didn’t wear glasses but walked around in a haze and couldn’t see the teachers’ writing on the boards in class. Everything else fell apart because of how I felt about myself.
I ran a mile home for lunch every day, I stopped attending choir – although singing was my favourite thing. Teachers began to dislike me and misunderstand me. I wasn’t aware that I appeared different or difficult but they reacted to me as if I did.

I don’t think about her. Not as a person. I don’t really care about her. It’s more that I feel broken by school and those months that bruised me so badly.

Do I feel better now I’ve been back and stood on that spot again?
Yes and no.
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Yes, I’m glad my child and my husband stood grinning on those cold cold floor tiles and helped me water down my visual memories with new ones.
And, no. No because I don’t like how I feel now. I don’t like it at all.

Mascara and Alcohol: when getting away with it got too heavy. 

mascaraeyeIt was the early two thousands, maybe 2003. I was still booking things, still agreeing to things, but in recent years had gradually begun to back out of more and more plans, and increasingly clocked up more no shows; strangely grateful for a child’s sniffle or a phone call to say things had been cancelled, and yet still in denial, still making excuses, still convinced I could do everything that I wanted to do. And still convinced going out and socialising was fun, was what I wanted. The tiredness or hormones of motherhood were making me enjoy home more perhaps? Being so busy in daily life meant I’d run out of time to get ready or the energy to stay out at night, right? There were well-argued reasons for every time I chose to stay at home. I would often truly feel ill when an event was upon us and I had genuine headaches, genuine stomachs problems. It all felt like real reasons and not excuses, and so the times staying at home built up and up and up like a brick wall. And it happened so slowly and I was so good at convincing myself that it was just this once we’d cancel, just this time we’d stay home because… because… Because, after all, going out is fun. Everyone likes it. Everyone. If you don’t there’s something wrong with you. Humans are social creatures. Fun, fun, fun times…

My grandmother had suggested I was depressed when she noted my increasing insistence for staying in, staying home but I looked at what I had and I was happy with my lot. And I could always always reason my actions. Until that day, one Christmas holidays, I was sure I was making my own choices and was in complete control.

It was the Christmas period. I’d booked pantomime tickets for what was then the four of us plus my parents. Getting ready for Christmas as a whole was difficult for me, it left me in a constant state of list-making, obsessing over minutiae, sleepless nights and panic, and the extra socialising completely drained me. I had to drink a lot to cope with anything social. I thought it was the same for everyone but I was chaotic for weeks, and every moment was taken with pinning down my panic and attempting to appear organised. I did appear organised but appearing organised was actually all I managed. It was a performance so convincing I managed to carry it off for years. I once admitted to being shy to a friend and she laughed and said “You’re not shy!” I really had pulled it off! So¬†I just kept turning up for things and drinking and talking crap. I remember telling one of my Open University tutors that I got through Christmas on mascara and alcohol, and she told me I should write a book called Mascara and Alcohol. Maybe I will.

As our children were still young, I’d booked matinee tickets for the panto. Already in a flappy state (I didn’t know I had anxiety. I wasn’t even kind enough to give myself the gift of a label those days. All I knew was that things made me flap, made me worry, made me stressful. I got stressed. I stressed out), I found myself getting hotter, trembling, focussing on negatives about my appearance, obsessing about a pimple, unable to draw that line that said “finished getting ready” and walk out of the bedroom, downstairs, to the front door. I’d got the children ready, given my parents a picking up time, my husband was downstairs ready and waiting to start the car. I’d organised every thing and every one¬†but I was Not Ready. I would never be ready. I couldn’t complete getting ready because that would mean leaving the house and I was trapped inside a forcefield that was insisting I stay home.

I’d met that forcefield before. Once as a teenager when cycling to a holiday job I cycled into the forcefield and it span me around and I found myself heading home again. At the age of five I refused to leave the house and go to ballet lessons because I knew I simply couldn’t go. I loved ballet but I never went again. I danced alone at home instead. Forcefields existed around doors and I couldn’t walk into certain rooms or areas at school.

But all these years later I still wasn’t joining the dots and putting together the picture of someone who physically and mentally couldn’t socialise regularly.

Upset, my family went to the Panto without me. Upset, I stayed home alone. I was relieved and comforted by the escape but incredibly upset.

What had gone wrong?

I’d done what I always do when going anywhere: I’d been in control of planning everything, I’d chosen in advance what I would wear, I’d pictured us there, I’d placed myself in amongst many people, imagined the claustrophobic crush in the entrance, pictured sitting under pre-performance lights, pictured people sitting all around us, imagined being spotted by people we knew, people we half-knew, people I couldn’t remember because (as I now know) I have a degree of face-blindness, imagined what I would say to people, realised I didn’t know what I would say, and knew deep down that I wasn’t going to cope – some other time, yes but not this time. But it was deep, deep down and I wasn’t really sure what was controlling my actions. My subliminal knowledge that I’m not coping or that I won’t cope often simmers away in the background until I meet that damned forcefield, and WHAM! – can’t do this.¬†This one event in itself was not a big thing but everything else had circled around and around until I felt that just doing this one thing was like entering a black hole.

That day was a biggie for me. I’d let a lot of people down. And I haven’t been able to trust myself since. Other people in my life no longer want to take the risk with me either and I’m rarely invited to anything. I’m not entirely sure what I want to risk committing myself to anyway. My husband will never plan surprises for me because he too doesn’t trust me. This is not necessarily a bad thing because he’s not a fan of too much socialising anyway, and I think his habit of being a grumpy, unsociable git at times is what attracted me to him!

So these days what I want to do and what I’m able to do sometimes overlap beautifully like a Venn diagram, and sometimes they stay firmly separated in their big old lonely circles. Often I will put myself through what is uncomfortable because it’s probably what’s best, other times I will actively seek out peace. Lying awake at night after an event (sometimes for weeks or years afterwards) and remembering how you cocked everything up is no reward for pushing yourself through something. It’s hell and it’s not worth the pain of clocking up yet another bad experience, yet another disaster. So instead it’s a lifelong project of daily self-assessments now. This self-awareness has given me a more joined-up picture of someone who has to carefully measure and weigh up what’s going on, what’s necessary and what’s doable on a daily – sometimes hourly basis. I have to give myself permission to make plans for fun things but I also have to be able to admit that not doing something is also okay and sometimes crucial. And I have found comfort and beauty in just being and not always seeking outside experiences. I do like time at home. I like it a lot. It’s not just something that I have had to force upon myself. It’s often something I have to fight for.

At a wedding a few years ago, I was struggling to cope and someone next to me was involving me in conversation. After a while of getting limited¬†response from me she turned to her companion and muttered something about “…so rude…”. I’m not rude. I spend my whole life adjusting myself to people and situations in order to not be rude. It’s exhausting. Why push yourself through things if you’re so overwhelmed you’re just going to appear rude? Humans are complex beings (no shit) and we can respond very differently to different situations, and there’s nothing quite like feeling trapped in situations that other people clearly find fun and enjoyable.
There’s something about socialising less that makes you look like you’re coping less. But I’m not coping less these days; I’m just coping differently.