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.”

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.

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 😜

What are yours?

*and yet I am

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.

“What price, creative souls?”

I draw three fingers gently down a page of sheet music and examine the dust. I left it open weeks – months – ago as a “Come and play me” but every day and every glance the pressure to do something else or the realisation I didn’t have time (my own fault: I didn’t make time; I didn’t complete other things quickly enough) won. I look at the notes and sing them in my head as I think of shopping and check the time yet again. Too bashful anyway to make a sound when I’m not alone. My camera is the same: dusty, waiting, unsure of its future. My imagination floods other worlds into my head, people I’ve never met appear to me and words unfold never to be spoken, never to be written. To be creative, to be musical, to thrive on sounds and words and images that I am part of, that come at my own pace, but to live in a world where sounds and words and images are now a media bombardment, gives me a sense of worthlessness: “We don’t need your creativity, Rachel,” the world seems to say, “Do something more useful. We have TV, we have radio, we have famous musicians, famous authors, big money stuff that draws respect.” Creativity that once served like a gentle, loving gift is now owned, branded, thrust upon us. 

To just do, to just feel, to just enjoy has become pointless. 

So here I am. Left. Frozen in moments. Waiting for the time when it will be okay. Living a lie. Stiff with impatience and boredom at a world that doesn’t pay with joy by the experience but with the dollar and the pound by the hour.

Wondering “Who am I?” 

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.

Important: Autism and empathy 

I wrote this in a private group but it struck me that the whole world needs to hear this: Being shocking at thinking deeply about how others might feel and not being able to look at things from others’ perspectives is not about autism, it’s called being a psychopath and it’s a human trait that exists throughout all neurotypes. Autistic people are usually highly sensitive people (as are some non autistics) and we often can’t handle how much we *are* good at this imagining how stuff feels for others, and how we need extra time to process this. Or we may even put things on hold until we have enough space to deal with them. 

I believe an autistic person *can* be a psychopath just as an non autistic can be but a lack of empathy is not a sign that someone is autistic just as empathy is not a sign that someone is not. 

If someone is not reacting outwardly the way you would expect them to think more about how timing is different in our brains and language is tied up in all this and we may want to use exactly the right words and not just plump for commonly used ones. 

Once the world stops thinking of autistics as cold, aloof and unresponsive we can begin to heal the pain caused by years of misunderstanding and this in turn will help us to feel less broken and unloved because we are incredibly tough on ourselves and the discourse around autism is often derogatory among us too as we turn in on ourselves with negative thoughts. I see amazing, sensitive autistic women deprecating themselves on a daily basis and they shouldn’t. They are wonderful

All Change 

I’m picking up her last-day-of-the-summer-holiday clothes from the bathroom floor. Greyed with fun and carelessly crumpled. Today she is wearing her brand new crumple-free uniform for the start of a new term at a new school. From oldest in a primary school to youngest in a secondary school. The stress and expense of the new uniform has plagued our lives for weeks. 

The anxiety and excitement of so much change kept her awake most of the night. Fuelled by adrenalin, her eyes shone as she said goodbye to me, keen to leave, to see her friends and share this first day with those who would understand. We, after all are not going though this as she is…. Little does she know…  I am sad and nervous and proud. This morning she had to get up and be out of the house a good 3-4 hours earlier than she’s been stirring on holiday days. Throughout this coming week there will be belly ache and a sore throat and we, her parents, will suffer the brunt of her tiredness in her efforts to cope. 

I am grateful for mobile phones and social media and all the messages passed between jittery friends in the last couple of days: “Are you wearing short or long sleeves?” “Are you getting a locker?” “Do we need our PE kit?” “Are you wearing socks or tights?” And last night: “I can’t sleep either. I’m too nervous.” This morning a phone call from someone keen to have a companion to catch the bus with. A huge thing to have to travel to school by bus for the first time after years of a five-minute walk. 

There is no doubt secondary school will change her. In what ways I can only guess for now. There is no guarantee she will be happy or unscathed, there is no certainty of anything other than this knowledge that change starts in a big way today and she will have to change to cope, and I’m not sure I’m ready for it. 

Regular but Fizzier with Extra Lemons

Always the juxtaposition of being human and feeling regular human feelings along with atypical reactions to some aspects of life is uncomfortable to accommodate when I need to talk about feelings and about coping. 

Autism is still discussed as a fault; certain things are lacking – apparently… But I’m not lacking. I’ve got everything I need to be a fully-functioning human being. 

I’m not broken. I’m not wrong. I’m not so very different but I do have different needs. I am always truly heartbroken if I pick up any hint whatsoever that I may not be perceived as completely capable, trustworthy or approachable. 

True, some things trigger problematic feelings, some things take extra energy. Some things cause ill health or anxiety. Some spaces, time-scales or expectations are too tight. The choices for how to behave and when and where are too limited for me. That doesn’t make me lacking; that makes society lacking.

I am safe, I am competent, I know how to put my children first. I know what’s important, what’s fair and how to accommodate my needs around those things. I trust my instincts and I inform myself to back those up. I doubt myself hugely on a minute-by-minute basis and make sure I am getting things better as I go along. The combination of autism and others’ perceptions of what autism might cause me to fail at means I am super-vigilant. I don’t want anyone using this against me. 

I feel perhaps in the same way that our nerve endings are right at the end of our finger tips and everything we touch gives us information, that all my experiences and my emotions are on the surface too; out there, on my skin. My joy, my pain, all my senses, the heat, the cold, the tightness of a space, the pace of life, the expectations of that’s-just-how-it-is, it’s all fizzing with messages going to and from my brain with immediacy and honesty. I’m not packing away mini reactions and mini experiences throughout the day, I’m indulging in great big panoramic gasps of life all the time. Everything is fingertips on a pinhead or sandpaper or silk or kitten’s fur or ice or a burning stove. It’s a series of wonderful and not so wonderful sensations asking for my reaction. 

And yet I must often swallow those great gulps of daily life experience, I mute the “Ouch!”s and the “Slow down!”s, the “OOOH!”s and the “Aah”s and I internalise them. I sit politely pretending to listen to someone talk, all the while wondering what the hell is going off in my peripheral vision, and then I am left with huge great big full stops. I haven’t reacted enough. I haven’t dealt with all this. I lie awake at night, overstimulated, processing everything. 

I am very fizzy. I’m bubbling all the time. The way society runs itself is really rather like someone adding a spoon to an already effervescent world and stirring fast. So I regularly and sensibly give myself a break from that great big stiry thing.

I don’t see it as a bad way to be, I certainly do not see myself as abnormal. I’m human just like everyone else. I’m just extremely  human. 

And because I’m extremely human I am extremely honest. Ironically, despite the superhero clamping down on myself I do, I actually have a greater need to react with immediacy to everything going on. I want to vocalise each emotion as each experience plays out. I want to dance, to sing, to shout, I want to echo sounds that move me, I want to enthuse like an emotive wine-taster: “I’m getting lemon zest beside an ocean!” It’s all so zingy. 

The written word makes me feel safe. My counsellor is a querty keyboard; patiently waiting for me to form the words, to tell her how I feel. So I write it. I write moments of joy, flashes of anger, hours of pain, I spill, I edit, I too hear what I say and feel purged. This honesty, this purging, this sharing shows a side of me hidden from daily life in the physical world. I know how it looks to write pain on a page. I know how it can diminish you in the eyes of some. But it’s just honesty. And it feels better for saying it, making sense of it, it feels good to be honest, to pssshhhhh out a little of the carbon dioxide that makes me fizz. Life is all about feeling and sharing. 

I’m not entirely sure where I was going with this but I feel better for saying it! 😀

No Bench

The 8-year-old girl in the playground sat on the bench between lessons and zoned out. She watched, she dreamt, she observed. She heard the games, she heard the shouting, she refused to join in. She wasn’t rude, she wasn’t unhappy. She wanted to sit still and watch. Yesterday she had joined in. Tomorrow she would play a skipping game. It was just fine to have sitting time. She would do this often. When sitting in groups at tables in class she would look longingly over at the empty book corner and imagine herself alone there. She wrote a piece for her teacher about sitting quietly alone and her teacher read it to the class. It was okay to be her, to be like that.

But sometime after that it became not okay to be like that. It was the last time she felt proud to be her. It became necessary to be always in the game, never sitting it out. Life was never that way again.

And yet I am still that girl.

Sometimes I can’t deal with some moments. Some moments are hugely loaded with too much expectation, too much thinking, too based around the speed of others’ lives and thoughts. Sometimes a moment in time can send me into a spin and my heart races painfully. I panic, I long to call on help from somewhere somehow but there’s nothing and no one. And no bench. The breeze banging the door scares me. A voice outside terrifies me. All at once I know I can’t have things at my pace with my idea of peace and I am panicked. It’s so hard to explain to anyone how after a while I just want to mend in a place where time doesn’t matter. I feel especially aware of the different human constructs – supposedly designed to help society tick over and how they grate against my own natural rhythms. I find myself making the most of a snippet of time perhaps just a minute where nothing is going on and getting lost in it; reverting back to my time on the bench and my world of quiet observation. But slipping into my zone isn’t good when it’s not backed up by other things; if it’s not made safe.

I don’t know who’s outside making noises or why or how long they’ll be there. I don’t know who is at the door. I don’t know if I am safe to walk around the house from room to room. I don’t know if I am safe to let it be known I am in. I want my time out. I need it.

Like a migraine or a virus or a broken limb or maybe a Sunday morning after a hectic week, this is a call for less action, for time out, for healing. It’s not a constant but it’s necessary and it’s necessary that it is understood.

I need so much not to be *misunderstood* though, that I hide and run and ignore because the basic need for peace and space and simple no-expectation-just-for-now-please seems too difficult to explain without misunderstanding. This is about no one and no thing but a woman trying to fit herself into a world that can often feel like a constantly spinning roundabout and wanting the time to cope with the dizziness it brings.

It is simple: I am not a machine. But I have fired on all cylinders like a machine; I have to work myself like a machine in order to be part of this damn playground. It’s a big game with a grand set of rules and I play it well, I’ve got it all sussed, but I can’t keep doing that nonstop.

So I have moments. When I’m not playing anymore. But I don’t feel proud. I don’t have anyone telling me it’s beautiful and reading it to the class and making me feel okay.

Treading Water

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“It takes so much more strength to plough with all your effort through a difficult day and to keep going than it does to surge with little toil or exertion through a healthy day appearing brighter and more victorious,” I thought to myself today.

A difficult day is all about prioritising despite a struggle to think straight, to remain upright. It’s about finding the courage to choose what is best to do and say, about when to slog on, and when and how to stop and make time to recharge.
These are the battle days.
These are the finding the strong within me days.

The other days are simply about sailing on a tide with the wind in my favour.

What did you do today?
Today I walked through a storm and I kept walking.

Three cheers for anyone treading water. Getting through these days where achievements are invisible deserves the biggest medals of all.

Could Neurodiversity Be Making Me Ill?

I’ve suffered all my life with intermittent and tricky to explain (so I don’t bother explaining) not-quite-right-ness:

Strange pains and feeling like my blood is pooling in my legs when standing.

Sharp stomach pains and exhaustion.

Sporadic aching somewhere, somehow and not knowing why.

Dizziness.

Reactions to foods, and then no reaction to the same food another time.

Feeling ill when sitting too long.

Restless legs and trouble getting comfortable or sitting still.

Wide awake when I should be tired.

Floored by exhaustion when I should be energetic.

A strange feeling – with inner ear sound effects – that at the back of my head the top of my spine is made of popping candy and if I look up I will pass out.

Fuzzy, whooshy ears.

An inability to hold my arms in the air for too long when hanging out washing.

Bashing into things.

Tripping over my own feet

Trouble with balance and co-ordination.

Vertigo without heights.

 

But all this fluctuates and there is also:

Great physical strength.

Muscles which on certain days can power up the steepest of hills.

A tremendous sense of balance, and an ability to hold substantially awkward yoga positions.

A stretchy and flexible body.

The posture of a dancer or a horse rider.

When I am well I am very, very well. I can fit a lot into one day.

I can garden like a machine

I can cycle after months of not cycling and have power in my muscles.

I can walk for miles with ease.

I can run up and down stairs several times in one day and wash and dry many loads of washing, change beds, clean the kitchen, vacuum, carry heavy shopping.

I don’t feel weak or tired or over-exerted. I just feel well, and plan energetically for several days ahead based on this current exuberance.
And then a bad day follows the good days and my head feels 2 pounds heavier, like it’s putting strain on my neck. My eyeballs ache. Everything I’m supposed to do feels like a monumental climb with heavy legs and brain fog. My memory is poor, and I’m not even clear what my intentions are. My thoughts don’t flow. My energy is gone. And I’m floored again, ditching my plans, needing to lie down and yet not wanting to lie down. Weak, shaking, losing hours. Hands trembling. Frightened of food. Wondering who the idiot was who made so many plans for me that I can’t possibly carry out… Aching. Uncomfortable. Not quite right. Totally frustrated by an unpredictable body.

 

I’ve always been like this. Completely unable to plan anything long term and unable to know what I will be capable of. Nothing specific, nothing serious, nothing long-term enough to see a doctor (apart from the exhaustion but that lead nowhere). And I’ve mostly been fairly quiet about it. Until now. I’m starting to read more and more about how autism and Asperger’s can co-occur with hypermobility problems, connective tissue disorders and Ehlers Danlos Syndrome. It’s early days for me only a little over 2 years into my diagnosis, and I still struggle to find enough information about the physical effects of my condition.

But I can believe myself now – about my not-quite-right-ness. It’s still a bit of a mystery but it’s a very real one.

A Project, Not a Day 

“I love you. I haven’t written your card yet and I haven’t bought you a present but I do love you,” I said as he left my vitamins next to my cups of tea and walked away. I need 3 cups of tea and magnesium and vitamin B supplements to get me out of bed these days.
“Good,” he answered with much weight for only one word, and closed the door behind him. He’s unwell today and we’re not planning any conventional celebration. I have painted my nails though and am working out how to cook a special meal with no oven.

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2016’s Anniversary flowers

22 years ago today: exhausted, nauseous and anxious, carrying a modest cream roses and freesia bouquet, and wearing a sale dress, I took his name and we committed to one another. I didn’t need to take his name – I had my own name but I wanted ours to be the same name and to have a family all sharing this name. In the years since I’ve thought about all the women’s own names that have been cast aside for marriage and how my own surname was not my mother’s or grandmother’s or great-grandmother’s. But their names all came from men too, and it seems to be one of the last remaining vestiges of patriarchy. Besides you’d have to go a significantly long way back in history to find a name that didn’t come from a man, and that wasn’t a topic up for discussion when I was 24 and in love.

The beginnings of tiny baby Gemma were growing inside me and I wanted us to all share a name by the time she was born. So 22 years ago I went along with tradition without question. (And being pregnant before marriage was part of my family’s tradition!)

Our relationship was over 5 years old by then, we’d lived together for nearly 3 years and we’d been engaged for 2 of those but we’d never planned a wedding. We both found it daunting for our own reasons.
In the end it was a small, inexpensive registry office wedding with no time to do anything lavish and not enough time to overthink or over-plan as I am prone to do. I’m still glad we did it that way and, knowing myself a lot better these days, I’m quite sure it was the right thing to do.
On our anniversary each year I think only very briefly of the day – it served a purpose and an important one to me but I think mostly about the years, the numbers, the clocking up of shared experiences. I think about what’s changed through our commitment and through time, about what’s been gained and who has been lost. Somewhere there is a group photo of our wedding day. It’s stuck in a box. (We didn’t have a photographer but our tiny group of family and friends brought their own cameras – and they were a talented, artistic bunch!). But I like our relationship today so much better than the one we had then and I’d rather live in the present.

It may seem an awful thing to say but I wanted to get the wedding out of the way. I just wanted to be married and get on with being married. By the evening I was not enjoying myself at all, was completely knackered and had run out of the ability to make conversation. Big events and big, long days are not for me.

But the big, long years are for me. The learning, the shared mistakes, the getting things right through error, argument and experience, the way a relationship balances over time. Boy, we’ve made some awful cock-ups – and we will continue to make new ones but I do believe we’re getting more right than we are wrong and for me this means that being older and deep in a love is a lot more comfortable than being young and in love. I am never certain of anyone’s feelings for me. I am forever afraid of losing people and often won’t work at friendships for fear of failure or rejection. But this has been one relationship I was prepared to risk all for and really work at it. We have both perfected The Right Royal Pain in the Arse, and have a most nasty, mean, thoughtless side which we save only for each other.

Result.

I didn’t expect much from our wedding day, I certainly don’t expect much from today. What I have is a certainty that through joy and pain and suffering and general life shit, I have loved someone for 27 years and somehow he has committed to me for 22 years and shown me that he loves me back and my own commitment has been repaid. So I love anniversaries and I love that we both survived another year. Each passing year that slowly becomes less and less certain through age and ill health becomes more of a celebration. I never took any of this for granted and I never will.

Throwing your whole being into one relationship isn’t for everyone but it is for me.
And commemorating the overlooked numbers like 22, and not just the rounded ones, is important too.
I am a project girl. And project family and project relationship have been two of my absolute favourites.

Happy 22nd Anniversary to me and him. And thank you, Richard, for yet another beautiful bouquet of flowers.

Intricately, Profoundly Simple 

A tiny hoverfly on a tiny chive flower
A tiny hoverfly on a tiny chive flower

We insult our own and each other’s intelligence with descriptions such as “the little things”, “simple pleasures”, and we leave ourselves wanting, expecting more of life and of ourselves. We tell ourselves little and simple should surely never be enough. We deserve bigger, better. We should have ambition and drive and strive for a place high above the simple. Little things and simple things become merely a break or a holiday from the important things – the things we should really be wanting and really be aiming for. “Big” things. 

“Complicated” things. 

The hard work things. 

And yet the not-so-simple truth is that the things which bring us simple pleasure and which we have long sort to degrade with labels of “ordinary” and “boring” are in fact phenomenally complicated, rich and interesting, and often hard to come by and hard to hold on to. 

Once we start to appreciate the complexities of the little things, the hard graft behind the simple things, and the time, motivation and aspiration needed to keep and protect those things, we can begin to see that which we thought of as important and aspirational were really just empty trophies of greed and insecurity. 

There is nothing simple about the simple stuff. 

We do not stand alone to get away from you; we stand alone to be ourselves 

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Being neurodiverse is like being a single oak tree next to a great forest of pine trees.

To live in the midst of the pine forest and attempt to behave as an evergreen all year round would be futile. The conditions are wrong for an oak. Being forever among the pines would be life-limiting and stifling, as roots fight for water, and branches fight for space and light.

But to live alongside rather than in the midst of the pines, to be a true oak; to rest after each long summer and to follow the natural patterns which are built within each living thing allows for stronger, more reliable and natural growth. It creates the perfect conditions for stability and better potential to succeed.

Being deciduous is not a weakness, it is a way of being, of growing, of recharging. It is not a developmental fault. You cannot grow leaves in winter if you were not meant to grow leaves in winter. You can glue leaves to a winter tree but you cannot stop them changing colour in Autumn.  You cannot thrive if imitation is forced

Let us stand alone. Let us rest. Let us be what we are. That is how we can keep coming back, oak trees seem to whisper in winter. And many autistic people will relate to this. We thrive on doing what comes naturally and instinctively. We do not insult you by behaving differently. We are merely surviving. (Thriving if we’re really in the right place)

Your fun thrills you and my peace thrills me.

While you are a rave on a farm, I am a picnic by the river.

While you are a rockstar on the dancefloor of a club on a Saturday night, I am a rockstar in the shower on a Monday morning.

While you are a whirlwind trip to a busy city with traffic smells and noises and bustling crowds, I am bicycle ride close to home with space and freedom and safety.

While you are shout-chatting above thumping music as the bass smacks you in chest, I am watching bees build nests as bluetits tsee-tsee in the trees, and the wind audibly shakes delicate leaves.

While you are feeling the excitement of pushing your body through white water, or high speeds or the thrill of chasing up and down great heights, I am feeling the thrill of catching a clear photograph, of seeing my first baby adder, of holding hands in friendship across a bunch of social networks and finding my tribe, my solidarity, my peace.

I am an oak.

Your forest is grand. I watch it from a little way down the slope and admire it. I know it better than you think and love it better than you’ll know. But I am not of that forest.

I am an oak. Let us stand alone. Let us rest. Let us be what we are. That is how we can keep coming back, 

We are both trees. And we are both rockstars.

When All is Grass and Tarmac

Grass-cutting motors and engines roar angrily or hum around me, depending on their distance, in this once quiet village. The land of crop-growing, hedgerows, wildlife and animal-grazing is been gradually swallowed by humans with suburban obsessions and addictions for order and sameness.

The irony of all the hard work, noise and petrol that goes into taming something we planted to tread on, lie on, look on and find peace from when animals would do it for free, and of our not planting more useful things to grow in its place makes me think we like the responsibility of this obsession because it replaces an age old compulsion to tame, control and work on the land, and this is all that is left of our natural instincts.

What a shame that such a big part of our time spent outside is so noise and fuel-filled we no longer work in nature and with the sounds of nature but against it, over it, and often despite it and to its detriment.

We don’t realise what we are missing, what we are losing. We don’t think we are part of nature, we think we are above nature and build artificial barriers to prove we are apart from nature: superior. We think we can visit nature and step in and out of it like royalty. Soon we will have lost the option to go back. And we will lie on our artificial, weed-killer lawns on a warm day, smell the petrol and the hot tarmac, hear the roar and hum of engines, watch the vapour trails of aircraft exhausts poison the sky with white lines as seemingly innocent as clouds,  and think we are with nature. But we won’t be. We will be lying on its grave.

A distant strimmer’s growl is batted off course momentarily on the wind and I hear the plaintive whistle of a begging fledgling. I hear the squeaky see-saw of a bird and try to remember if it’s either coal tit or a great tit.

I make my mind up to quietly and actively do no harm to nature for the rest of today; to sit in it. And look up bird songs.

 

Storm SATs and the fright in the night 

shutterstock_356510603Last night Storm Katie rattled the roof tiles of our house in the small hours, clattering them like plates in the kitchen of a busy restaurant. It was disturbing and troubling. But I was far, far, far more troubled and disturbed that the final 4 months of my youngest child’s experience at primary school will be overshadowed by the anxieties of testing, unrealistic expectations and hideously wonky ideas of what getting the most out of schooling are. Her curious mind, her clever word play, her creative soul, her amazing observations; her beautiful choice and use of words in writing to set scenes, evoke emotion, create dialogue, and take the reader to another world. Her thoughtfulness, her wonderful sense of right and wrong and of fairness. None of that will count. She will be judged on technicalities, on her memory of rules, on her speed of taking up these rules and applying them in stressful exam situations. She will feel less able and intelligent than she is, she will feel pressure to perform on behalf of people she has never met and she will feel her worth and ability diminish. She is already frightened and I am having to take measures to deal with her anxiety.

‘What if I fail?’

‘What will happen to me at secondary school?’

I do what I can to tell her her strengths, to praise her, to show her I do not believe in testing for primary age children, and I do not trust these tests – now more than ever. But I can’t give her back these last four months and I can not change the way it means she will be judged by strangers and future education systems because of this.

Childhood should be great. It should be fun. It should be as diversely approached as possible by all of us responsible for the care of children. It is not only wrong but cruel to see it as preparation for work and adulthood. But cruelest of all is this idea that you can set strict standards for developing minds when development in children is so spasmodic and varied from child to child. Squidging all kids through sets of judgements with the very narrowest and limited of definitions of success and therefore creating massive scope to feel failure is like trying to shove a huge great, tangled multicoloured ball of fishing ropes through the eye of a tiny sewing needle. So so much will not fit and has no hope of doing so. And why should it? Why should they?

Why the hell should they?

It’s time to take back childhood.

Bugger the tests. Yes. Bugger them.

 

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Neither This Nor That: autism identity in a non-autistic world 

img_3016Being a mum and wife and helping run a business and a home, and being autistic has created two main versions of me: I can do busy, I can do efficient. I can do friendly, capable, organised. I can get up early and get through whole days without any me time. I grin and chat and duck and dive. It’s not that I don’t enjoy it, it’s that it’s exhausting. But this is the version of me every one likes and I push her hard to keep it up.

But it’s not really me.
Real me is holding her breath.

The lack of proper breathing space catches up with me though, and I begin to fail, to fall. It’s like I’m sitting on a cliff and getting closer and closer to the edge. Days get more difficult to wade through, I become clumsy, forgetful, insanely anxious.

I panic. And the panic rises.

Like a dog I pace and circle and look for a safe place to hide and be alone and rest, but the busy me has created a void where there are no safe places for the burnt out me. Every sound around me makes me twitch. Other humans become a threat. Not like paranoia but in a dutiful way, in a destruction of my peace way. I begin to loathe the sounds of fellow humans. My body starts to freeze up because the 2 strongest messages in my brain are “Run away from this!” and “Keep coping!”

Everyone around me is unaware of how much I’ve struggled and am struggling. I stumble and scrabble and I can feel the massive inevitable drop coming, and it’s horrid, it’s terrifying, and I really don’t feel safe at all anywhere.

Bit by bit by awful bit, events get more tedious, conversation becomes less possible, sleep fails, waking up fails. Pain comes. I run out of possibilities, I lose all direction. I can not go on. I am empty, biting my knuckles, unable to eat or drink and staring into space.

Help… I’m falling…

And fall I do.

I deliberately banged my head against the garage door 2 nights ago. I hurled my notebooks into the middle of the garden – my gardening lists, my household lists, the confusion of what needs doing. All these plans. Good stuff, bad stuff, who knows? What was I thinking? I was now incapable me.

I couldn’t do shit.

I’ve felt steamrollered ever since. Flattened. Hurting. Needing recovery. It’s a long climb back up and I’m not ready.

There shouldn’t be these two versions of me because neither one is right. The me that feels like real me pops up now and then but she makes me feel guilty. I’d love to let her live a full life and wipe away the other versions of me but I really really don’t know how to let her exist and be happy. She’d have her own pace, her own needs and they don’t fit this world.

Non-perfectionists versus Perfectionists

Your assignment: Undertake 10 specific tasks tomorrow.

 

The Non-perfectionist:
Well I can see you’ve given me too much to do in the time so I’m aiming to perform 8 of those. Because I don’t want to run over into my own spare time, I’ve deleted two tasks which I consider unnecessary.

The Perfectionist:
Those ten tasks? Oh. Okay. I’ll stay up half the night worrying and planning and set my alarm earlier than usual.

 

Later…

The Non-perfectionist
8 tasks achieved as promised. I haven’t knocked myself out (and why should I? I wasn’t asked to knock myself out) but I’m happy that it’s all done. Yay me.

I’m off to do something for myself now.

 

The Perfectionist:
I haven’t finished yet!!! Can I have extra time?! I’ve only finished 7 tasks and only 6 of those are absolutely perfect! Oh I’m so cross with myself because I know I can do better! No, I won’t stop to eat. I didn’t sleep last night anyway so I feel a bit sick. I will get it all done. Boy, I’m exhausted. Stupid me.

 

Much later… 

The Non-perfectionist:
Zzzzzzzzz…

 

The Perfectionist:
Oh, I’m so disappointed with myself that all that took so long and that the last two tasks weren’t done better. I wish I were a better person. I’ll just lie awake all night going over everything and sighing hugely with my great sense of underachievement.

 

(Needed to write this today to remind myself… )

 

Pulse

No more BBC news.
No more cheap, fizzy booze
No more trolley-bumping blues
No more bargain-mad queues

The TV is off
There’s washing to be done
I have tea
I have Bach (The iPod is on)

Guitar strings plucked crisply
A fugue in my head
Preludes my anxious mind
For calm instead.

Overpowering the beat
Of a cortisol heart
Softening my movements
Challenging my part

Intricate simplicity
Demanding yet giving
Slowing my thoughts
Music for living

A tune from the past
Confident and kind
Playing memories, plucking heart strings
Time in other times

That moment in this moment
That past living here
Creating a space
A pause in the fear

To listen, to feel
Tempos setting the pace
Tranquilised neuroses
Finding my place

Autism is a garden not a THING

shutterstock_225623656Autism is not a THING

Like a bad toe or a bad heart

It’s not an ILLNESS

Like flu or cancer

It’s not even EXACT

Like a tumour or a broken bone

It’s more like a GARDEN

Or a veg plot or a window box

But instead we ARE that garden and we LIVE that garden.
We all have some of the things – yes all of us – everyone – even you.

We all have the blades of grass or the ivy or a rose or that little bit of moss that sits between the roof slates and in the guttering. We all have bits of the bits that make up autism. It’s not easy to count or measure all the bits that make it enough to BE autism, and sometimes it is no more than a feeling that everything is not right or not easy: there are too many azaleas, and too many thorns on the roses perhaps or maybe the ivy has taken over.

But it’s not even necessarily a problem until we compare our garden with other people’s and wonder why it’s different and why we enjoy or obsess about different things, use colour differently or simply struggle to conform to garden norm. Allowed the right tools and allowed to use them in our own way many of us are completely satisfied.

People who are not autistic but think they know, want to measure autism as a THING, want to tell people whether they are allowed “into” autism or not, and then try to tell people their autism makes them problematic like a disease, like a weed, like something to be managed, or even feared.

But it is not a THING. It is a way of being a human that overlaps everywhere with everyone else’s way of being a human. It’s just that people like noticing differences, and if you’ve got enough of them, out comes the measuring stick and the assumptions.

‘Ooh. I expect you’ve got too much ivy.’
No.
‘You’ll be obsessed with grass then.’
No.
‘You’ll have a special skill for topiary like my cousin’s neighbour’s son.’
No. Not even that. You’d think so though wouldn’t you?
‘But what about that film where that man…?’
Ah that film. That man. Yes. No.

I saw a film about a murderer who was wearing a green jumper once and you’re wearing a green jumper… I can’t make that connection? No? Funny that.

We do need some form of measuring if the creeper up the wall becomes too big to manage, we need some form of help if there are too many jobs and not enough hours in the day, we need some form of acknowledgement if it’s essential to our health and well-being that we be allowed to concentrate on our wildflowers rather than our window boxes.

But there is no one THING that links autistic people together like a clan other than outside perceptions. We’re just the mixture of genes that made us the individual we are. All of us.

Even if we’re not gardeners. 😉

Inconveniently Alright

When I’m here BEING ME, doing what gives me PEACE:

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– challenging myself, thinking, doing, exploring, observing, taking note, playing music, sometimes writing, sometimes not, feeling NORMAL.
When I’m going from one task to another, being PRODUCTIVE, being USEFUL, finding FULFILLMENT.
When the day runs smooth and the hours don’t gallop or groan.
When nothing seems or feels WEIRD or DIFFICULT or TOO MUCH.
When I have CHOICES and FREEDOM and I can BREATHE…

Then.

Then I think WHAT DISORDERS?
No – really – WHAT DISORDERS?
What do they MEAN?

What’s WRONG?
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What IS wrong?

What is all the FUSS?

I’m okay. I really am.

Why is this world designed for people to NOT be THEMSELVES?
For ALL KINDS of people to NOT FIT?
For people to HURT?

Why would we rather fill the world with words like DISORDER
And BROKEN
And WRONG
Than DIVERSITY?

It is
The way
It is
– they say

But it’s not JUST the way it is.
It doesn’t HAVE to be so.

It’s only the way we’re LETTING it be.
The way we MADE it be
And dressing it up as NECESSARY
Instead of letting people BE.

It’s INCONVENIENT having to think around me.
And TOO SCARY to imagine I might be RIGHT.

So, for now, I am DISORDERED
TIRED from making myself fit where I don’t
When I DO KNOW where I DO fit

I just KNOW
I’m okay. I really am
And life’s about VARIETY
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Well it’s supposed to be anyway


To tell or not to tell.

Last night I dreamt someone I was chatting to had offered me a job. He said he liked my attitude and my intelligence and knew I would be good at the job (I don’t know what that job was). Although it was someone invented by my dream, I was supposed to know him; it was someone from my past who I hadn’t spoken to for a few years. But the important thing to note is that based on past knowledge of me and a current conversation, he saw something that would be an asset to whatever this mystery workplace was.

What happened next was very close to how I react in real life: I panicked, I stumbled, I felt the answer was probably no thanks but didn’t know which part of me, my life and my personality I needed to extract in order to say no. The first thing I told him was that I have Asperger’s. It wasn’t the first thing I wanted to tell him but it was going to lead on to how and why I get exhausted easily and how and why the way I’ve arranged my life and what I do suits me better than being employed in any regular conventional way. The real truth is that I have work, and I am busy. I don’t currently have time to do anything else anyway. But me being me, I can’t separate out what’s needed and what’s not. To me everything is connected. Everything is significant, everything is important. Once I’ve heard myself say something I usually know then which bits I’d like to erase and which bits I’d like to leave in but my first reaction is to say everything that’s forcing itself to the front of my mind. (Well it’s that or nothing. Saying nothing is my other cool trick).
The person in my dream didn’t wait for me to finish my sentence though or for any other explanation. The word “Asperger’s” immediately had him physically backing away uncomfortably and nodding knowingly. I continued talking and explaining and yet he raised his hand as if to say no further explanation necessary. He feigned listening politely but I could tell he was gone. The offer was gone too. Someone who 30 seconds earlier had seen me as capable suddenly saw a liability.

Everything faded and I woke up.

Why did I tell him that?

Why do I tell people? Even in real life I tell people. It’s all over my blog, it’s on my twitter bio; when I first completed my autism assessment I wrote an open letter to the world. I wanted everyone to know. I guess I needed a “Well done, you. You’ve coped with so much.” I guess I also needed to self-obsess for a while. I’d spent a lifetime avoiding talking about myself because I couldn’t pin myself down. At the time it became the reason I had found life so hard.
But it’s not the only reason I find life hard and by no means does it make everything difficult or impossible. People told me it didn’t change me and it didn’t change who I am. It was an affectionate way of saying they knew me and still cared about me and wouldn’t look at me any differently. But it does change me and people do look at me differently and people do assume I have certain limits without even bothering to ask me.

Next time I get offered a dream job (<- autistic person doing humour), I’m going to be flattered and concentrate on the positives: someone’s noticed I have talent! (God only knows what it is!) But I’m also going to point out that I’m doing lots of things already and thanks but no thanks.

And by the way, man in my dream, I wouldn’t want to work for someone who sees autism as a liability anyway so I’d say I had a lucky escape.


Backtracking

This is the first story I wrote for my writing tutor in October 2009. I hadn’t written since school but found myself longing to write again after my father died and I needed time alone in other worlds. I’ll never know whether it was his death that inspired my writing or my starting to write but looking back it feels like it was a catalyst. And having the discipline of a course to follow was just the boost I needed. I was inspired to dig out this particular story this week when a friend shared a photo of a sculpture by Penny Hardy. I’ve asked permission and Penny has kindly allowed me to use this photo here. Many thanks to her. I’ll put some links below for further interest.

You Blew Me Away by Penny Hardy
You Blew Me Away by Penny Hardy
Backtracking

Eddie sighed, feeling old, as if retiring from his job at the rail company was another nail in the coffin. He felt silly and uncomfortable wandering around a scrapyard, looking for goodness-knows-what amongst the rust and mechanical miscellany. Still, he had to prove Jan’s friends wrong – he wouldn’t be ‘getting under her feet’. So phase one of clearing his allotment was making the shed a useable space.

He’d noticed other allotment holders had chairs and tables and radios amongst the pots on their shelves. He thought he should probably have the same and that the scrapyard would be the place to look for some of these things.

Staring at the sharp, unidentifiable rust shapes and contorted bicycle jungle he scratched his head. It occurred to him that he was probably looking in the wrong place; what he was after wouldn’t be left outside in all weathers. But he continued staring up, impressed by how beautiful orange rust looked against an intensely blue summer sky.

And that’s when he noticed a hand. A metal claw of a hand, an accidental shape created by broken and twisted bicycle spokes. The hand was reaching up out of the wreck into the sky, reaching out for help. A cold bullet of shock and sadness torpedoed through his body and his memory tried to reload images from his past. He blinked them away turning towards the small office at the entrance where he would ask for help.

Under a shelter behind the office was a collection of old school desks. He ran his hand along one, feeling the varnish and remembering his own school days. This would be perfect; great for storing his sandwiches. He wouldn’t even have to go home for lunch. Eddie found a deck chair and an old radio and took them and the desk to his car then turned back for one more look. The spokes no longer looked like a hand at this angle – just a twisted mass of wiry metal. He found himself compelled to walk back to where he’d previously stood, so that he could recreate the illusion.
How wonderful that something so useless could conjure up such a powerful image:
A human shape created from junk.

And then he was in amongst the rust and spikes, pulling. Pulling out whatever he could find that was bendable, shapable. A powerful urge to have that feeling again was taking over. He could do this himself. Something that looked like old bicycle spokes could also look like a hand, so why not arms? legs? a head? He took to his car anything vaguely malleable, staining his clothes with rust and cutting his hands, until there was no room left in the car. He would come back.


‘You’re quiet this evening’ said Jan after dinner. ‘What’s going on in that head of yours?’
‘Nothing’ replied Eddie, visualising his hoard in the shed and imagining it taking shape already. He would start with the first: Hayley, the manic depressive who had leapt in front of his train in 1970. Then Mikey, the lad who ran after his ball onto the track in 1978. He would make 7 metal sculptures in all and stand them on his plot with a view of the valley and tell them all how sorry he was and how he would carry their deaths around with him for the rest of his life.

It was three months before Jan became curious. She had continued to keep the house as neat as ever, had seen her friends as much as before and was beginning to notice that Eddie’s retirement had made little difference to their marriage after all. In fact she was feeling rather neglected.



‘It was terrible’ she heard him say as she entered the shed ‘Your poor wife, John. I read all about her in the paper. Right, you can keep an eye on Mikey, while I start Gareth. At this rate I’ll have you all together by Christmas’
As he turned to move sculpture number three next to the first two he caught sight of his wife. She wasn’t moving, her face was pale, and tears flooded her eyes.
Eddie stepped forward and Jan dropped her head onto his shoulder. With their arms still by their sides, they both trembled with the release of many years’ pent up emotion and tears.
‘You don’t forget’ whispered Eddie to the top of her head. ‘How can you forget what you’ve done to people?’ He raised his head, guided Jan into his deckchair and leant himself against the school desk looking down at her, eyes feverish. ‘I read about them all afterwards. I didn’t want you to know how bad it was.’

Jan reached up and took Eddie’s hand ‘Tell me now. Tell me everything.’


End.


Many thanks to Penny for allowing her photo to be used.
Penny Hardy has a website here
: http://www.pennyhardysculpture.com/
and a facebook page here: https://www.facebook.com/pages/Penny-Hardy/122465097936140?fref=ts

(I’ve noticed WordPress has just congratulated me on my blog anniversary. It’s 6 years old today so that was nice timing.)



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. 

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. 

We do not heal the past by dwelling there, but…

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Today is Dad’s birthday…

There are days, moments perhaps, when I need to listen to sad music and cry about my dad. It’s part of acceptance/healing/being human.

We do not heal the past by dwelling there; we heal the past by living fully in the present, said Marianne Williamson.

I don’t believe grief ever goes away or that you ever stop mourning those you love. And I don’t believe in pretending. So I don’t entirely support Marianne Williamson’s quote; I think emotions are far too complicated for such simplicity and I think remembering is important. We learn from life, we take hurt onboard and we carry the past as experience and wisdom, and are better for it in many ways.

But the trauma of Dad’s death and the events surrounding it are memories that harm me and I can’t work over them or through them, I need to shut them away. After years of circling distress, I choose to ignore the day he died and concentrate instead on the day he was born, and be forever grateful that he came into this world.

He was complicated and at times difficult but he had an amazing brain and amazing insight. I believe he observed life in a very special way and saw beyond façades in a way most people seem incapable of, and today I celebrate his life with a pride so huge it fills my chest. And he’s not completely gone; his children and grandchildren (and future great-grandchildren) are making sure of that.

It is not easy to shake off elements of the past while keeping hold of that which is dear to us and that which is good for us but I think that’s what we should do: live in the present but bring the past with us. After all it’s made us what we are today.

Dear Inner Guru

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Take me to a hammock, well-supported by two strong trees, in a secret destination.

Let there be no clocks, no watches, no TV, no radio; no news bulletins, no routines, no fixed mealtimes.

Vanish the engines of the modern world. Halt the wars, the greed and the destruction and the pain wrought in the name of power and progress

Tell me the weather will be what it will be but that I am safe. Make me breathe – properly breathe so I may feel the power in my breath and I may blow away old stress in my lungs.

Give me air, give me water, give me sunlight. Demand that I list what else it is I truly believe I need or deserve from life other than air and water, food and shelter. Let me carve a heart on a tree as my list. Allow me to believe I’m worth a little love.

Make me close my eyes and listen to the breeze and how it moves the things around me. Let me open them again only to look at clouds and birds and flickering leaves.
Tell me now is what matters. This is not about the times gone or times to come.

Cut the strings of the false hammock holding up my life, that I might turn off the chaos, mute the panic, drive out the urgency.

Now show me a space for calm to fit neatly where anxiety usually reigns, and pass me the book I could never before quiet my mind enough to read.

Teach me that peace is held in a hammock between two trees, not strung together by past battles and future fears.

Anxiety is disabling. It fills your head. It saps your strength. Often it is non-specific – it is a physical and emotional block. Sometimes it creates a whirlwind, and you’re trapped inside begging for peace. When the world can’t understand, can’t give you peace, you have to try to search for fixes of your own. 

I’m not at all religious but I do believe there are spiritual ways of asking for help and I do believe we have more answers than we know inside us. This is me, asking myself to help and giving myself some answers 

World Autism Awareness Day: we are not broken 

shutterstock_258287717 2Today is World Autism Awareness Day. You know about autism: you’re “aware” of autism, right…?

Like depression and other mental health conditions, and like homosexuality until very recently, autism is vastly misunderstood, feared, and seen as a disease, as scary, as wonky or as something to be cured or avoided. 

It is none of those things. It is about how our brains are wired through our genetic inheritance. 

Try and forget the word “disorder” if you can.

Through my parents’ genes I inherited a brain that puts me on the autistic spectrum. It is so not a disease and not scary and not wonky that none of us knew for 44 years. 

The main problem I have had in life is a feeling of being a little different and not knowing why. Some things have been a struggle and I could see they weren’t a struggle for others. These struggles were mainly around school and the expectations of others.  

I was forcing myself to fit was all. 

When I don’t force myself to fit – when I just get on with being me – I am perfectly happy. Now that I have read and read and read and informed myself, I am wiser.  

Just like the majority of people in the world I had a narrow and inaccurate view of autism. I’m not like Rainman, I’m not like the boy in the Curious Incident of the Dog in the Nighttime, I’m not like Don Tillman in The Rosie Project, I’m not like Sheldon in The Big Bang Theory.
Those and other narrow views caused me to spend my life convinced I was not on the spectrum. But then all the reading and the studying of the lives of real people with real autism and, importantly, of women, with their individual not matching stories made me see what a vast and complicated spectrum it is. 

A person with autism is a human being and an individual first. We are not part of a clan of people with matching needs, likes and dislikes. And we don’t have matching behaviours either!  Just like people who are not on the spectrum we all have different struggles, different senses of humour, and different views. Some of us are feisty, some of us are gentle; some of us are sociable, some of us are shy; some of us hate noise, some of us love noise; some of us have hobbies that last a lifetime, some of us don’t; some of us are creative, some of us are not; some of us like sarcasm, some of us don’t; some of us have an amazing talent, many of us don’t! Some of us can cope with being teased, some of us take things too literally; some of us have a favourite chair, some of us don’t give a damn where we sit. Just like everyone else. 

Some of us stand out as looking different, many of us don’t… etc… etc… etc… 

We are not dangerous, broken, weird, wrong or waiting to be cured. 

We just are who we are. 

The hugest problem for most people on the autistic spectrum is the preconceptions and ignorance of others. 

Sure there are some differences between brains on the autistic spectrum and brains not on the autistic spectrum. These differences can affect our senses so that some are more defined, they can affect our fear so that different situations can be more scary, they can affect our socialising because reading social cues can take place more slowly, and they can affect our organisation because doing too many things or switching tasks quickly can be difficult. They can also affect our energy and our sleep patterns because trying to not let our differences upset others is hard work. 

Some people on the spectrum have such intense difficulties that they require a lot of care and struggle to be understood and to be independent. But behind those difficulties they are a whole human being. 

Many of us don’t require much – if any – care. We simply want a world where we can live comfortably without anyone saying we are broken, inferior, or needing a fix. 

The best fix the world could give us is respect and acceptance.

We just have to be allowed to be us and not think there’s anything wrong or unnatural.

All the things that are a big deal or can seem like a big deal would be much less of a problem if people could see that like left-handedness we just have to adjust our position sometimes to do the same things as everyone else and not try to be right-handed; like homosexuality we just have to be allowed to be us and not think there’s anything wrong or unnatural.
We are all different, all of us everywhere. Human beings are complex and intertwined. Race, sexuality, size, health, hair colour, shoe size, likes, dislikes – they are all differences. Autism is another one of those differences. Big deal. 

Is it a big deal? No. Getting educated about it, putting to bed your preconceptions, seeing how society misjudged you and how you misjudged yourself is a big deal. But autism itself isn’t the big deal. It’s the way we fail to work around it that’s the big deal.

Seeing autism as a disorder, as something that has been caused like a disease, is damaging – it’s backward-thinking.

When I think of the stinking cold I am currently suffering from and the terrible night I had with burning throat pain and trouble breathing, how I am struggling to operate, I feel broken – I feel not right.
When I think of the terrible, dark days surrounding my father’s illness and death 6 years ago, of the days holding his hand or talking on the phone and listening to him talk about the progression of his illness, of his death, his funeral and the months following, I feel broken – I was not right.
But when I think about autism, about my own discovery and acceptance, I feel that society is broken, education is not right. I don’t feel broken – I feel perfectly alright.

Each and every one of us on this planet is on a spectrum of differences. When we learn to accept that and those differences as part and parcel of being a human being we can stop locking them away in categories marked “disorder”, stop looking for cures, and stop seeing difference as such a big deal, and move into a world where our perception of what a human being is is naturally wider and more accommodating. Once you educate yourself about something, you can stop making such a big deal of it, it seems.

Remember how we used to think of women as inferior to men? How we used to think of black as inferior to white? How we used to think of gay as inferior to straight? Well, we’re still thinking of autistic as inferior to not autistic and as something that needs a cause and a cure working out. Can we stop that please.

How to be a Kettle and Talk to Onions

shutterstock_139529804Women with Asperger’s and autism slip under the radar again and again and again. We are so bloody good at “pretending to be normal” that we get away with it even when we shouldn’t and should instead be living a far less anxious existence.

If there were ever any doubt that I am not normal, today I squashed that flat.

I broke something precious for the first time in ages just to try to break a cycle and find some peace.
Usually I am an eternal sock-puller-upperer. And I am a professional protector. I feel it my duty to not drag people into what I am going through. This doesn’t mean I lie – if you ask me I’ll be honest, but I will do my best to protect people from the raw state that life has often left me in, and pick words that will cause the least damage. It’s not entirely successful but the times I have battled and won far outweigh the times I’ve caved. Feeling I need to punch my way out of a box is common for me but I pull up my socks, take a deep breath, strike the Warrior Pose, and think seriously about what’s worth making a fuss about and what’s not. My guess is that I have about a ninety percent success rate of busting through a day unscathed, and, importantly, without letting any scathing show. Yesterday, for example, I shouted, ‘I’m not finding this even remotely funny!’ at two onions when no one else was about, and spared the more sensitive creatures of the world my troubles. I know about protecting people, about putting people first, about internalising and keeping the peace. I mostly feel practical, productive and caring, and in tune with the world around me.
Apart from a couple of minor differences such as not driving and not participating in school-gate chat, I’m a fairly typical woman and mother. I often wonder if we made a mistake and I’m neuro-typical after all.

But then come the days when I remember the world is not my oyster, I am not free to make long term plans like everyone else or stick a pin in a map and see where I end up, and live a life being thrilled by surprise and adventure. I am at the mercy of Bad Sock Days and no amount of shouting at onions will help me. I take my adventures on a small scale, short-term whim: in the kitchen, in the garden, in my online book purchases. When I step away from my limitations I am taking enormous risks and the sense of failure gets to beat any sense of “at least you tried” far, far, far too many times to make many risks really worthwhile. Besides I don’t get the same thrill that other people describe. Life is adrenalin-fuelled every single day anyway – I don’t need to force it. Quiet days are my adventure.
So I’m mainly happy that I’ve found some way of combining control, happiness and being the best person I can be for my family whilst retaining a great deal more peace than I think many autistics achieve.

I can’t remember the last time I cried and deliberately broke something – I can go for long periods of time being very restrained, and for an autistic person I believe I do the internal talking to stuff very well indeed (I read somewhere that autistics are really bad at this. Please tell me if you think it’s not so). I pride myself on my ability to hold it all together and keep on keeping on for long stretches of time. Since I was very young I’ve almost pulled off conventional and I’ve been working hard at it ever since. I’m so very nearly a natural now. I occasionally see a flicker of “What was that?!” flash across someone’s face; only for a moment though and then I’m back to getting away with it. I adjust and readjust to fit others’ needs and am on alert for what those needs might be all the time. I’m often seen as less weird than “normal” people!
I seem to have a knack for putting my own needs aside for days. Other people’s happiness gives me happiness and I strive to recreate that satisfaction when I can. One of the stereotypes of autistic people is an obsession with a special interest to the detriment of all else and a tendency to bore others with that obsession. It doesn’t present in me quite like that. I do have a project-minded brain and I can obsess about all sorts of things but I mainly obsess about people and home-life, and spend my time organising myself around those. I enjoy listening to other people too and hearing about their lives. I am a quiet observer. My decisions about what to do every day are based on what is needed of me and I readjust this regularly as things change. It’s not something I have to think about too much and I’ve always had good instincts for my children’s needs. As parents, our struggles and rewards are the same as anyone else’s and we are pretty conventional and do pretty conventional things with our kids.

But today I felt so trapped and frustrated I didn’t know what to do and I knew there was none of that keeping on stuff in reserve. I felt life was picking on me, preventing me from having fun, I felt I was unable to appreciate a day with my family because something more powerful than my wishes, my plans and my organising – something even more powerful than night turning to day was controlling me. You can make it Monday, you can make it my husband’s day off but I can’t have it. There may as well be no Monday.
It looks, from the outside; I’m sure, like a child angry at not getting her own way. It feels more like a lone battle and a desperate grasping to regain control of myself. There’s an intense frustration in having no control. The inability to put one’s finger on exactly what is to blame is, I suppose, infuriating but there’s no real anger – just an immense physical fighting instinct whilst simultaneously longing for peace. Wanting to bat away a mosquito, perhaps, only there is nothing there but the knowledge that something is after me. So what the hell do I bat at? I have to feel I’m doing something in my defence. The loneliness and helplessness and a sense that this is a journey I am taking on my own and I don’t want to go on has me running in circles trying to find a place of calm away from the turmoil but it hounds me. I want to tell someone, I want to talk about it but I’m an adult, I’m a mother and moreover there is no reference point for what I’m feeling. I’ve never heard anyone talk about this situation before. It’s all “why?”s and no answers. Add to this a history of never talking about this to anyone ever in my life and I’m left with mental energy and physical energy formed from an urge to escape rather than an enthusiasm for anything. This useless energy and the need for everything to stop leaves me with an urge to throw something. Throwing seems to give me a sense of hurling the unwelcome, unproductive energy away from me.
I didn’t want anything from anyone, I wasn’t cross with anyone so I chose things. Unfortunately today I chose my iPad to throw because of the sound it would make as it hit the radiator.

Now I’ve had a little time to think about it, I think I know why it happened today. I think I was waiting until it was safe: until there was another adult in the house, another adult to take my place. I could go and throw something alone and away from everyone. I think this morning’s meltdown has been building for some time and there are probably allsorts of triggers. I don’t really know. I never do. It’s all guesswork. All I know is I couldn’t do anything until it was over. We had made plans, but I had to step out of them. I had to admit I couldn’t be involved. I tried to put my feelings and reasons into words but I couldn’t. I paced as I waited for everyone to leave the house, I distracted myself by grabbing clothes from the wardrobe and piling them onto the bed in some kind of pretence of a clearout. The constant physical movement and using up of energy was useful if nothing else.

When everyone had gone and I felt the silence, I walked around the empty house, tears flowing so fast and hard that my face hurt and I was temporarily blinded. I had to stop and sit down to cope with the physical exhaustion heavy crying brings. As I sat waiting until I could move again, I noticed a noise like a whistling, stovetop kettle just as it begins its crescendo. I always found that sad murmur just before the whistle disturbing – to me it sounds like a wounded animal. I realised the noise was coming from my throat. I missed my family, I wanted to be with them, I didn’t want days like this, and I didn’t want to subject them to my turmoil either. What I really wanted was to belt out the emotional pain I felt but instead I had trapped it inside my throat.

When I see caged animals running themselves at the bars of their prison, chewing on themselves, repeating a head movement rhythmically or pacing in a small space, I recognise the pattern of a living thing that has had to contain one or more instincts for too long and has been forced to live a life they weren’t completely designed for. I recognise the need for something physical – even pain to create a release. I recognise the powerlessness, the feeling of being trapped, of not being able to run away. Of no other choice.
Some captive animals may perform better than others. Believing they have all their needs met we can be fooled into thinking their lives are good enough. But we are always forcing them to be something for us, and therefore we are not being entirely fair to them.
But what about animals born in captivity – those who know no different? Or maybe they do…? How much do they sense or feel that life is somehow not as it should be?

I think autistic people are like animals born in captivity. We are always forcing ourselves to be something for other people and therefore we are not being entirely fair to ourselves. And unwittingly other people are not being entirely fair to us. We are trapped in systems where society cannot be rearranged for us. Instead we have to rearrange ourselves constantly for society.

It’s impossible to describe to a non-autistic person why we don’t do things we want to do. Why we turn down fun, why we let people down. Sometimes the most simple yet pleasant experiences seem impossible, and how on earth can we explain that?!

Taking it right down to the most basic human needs might help perhaps. Sometimes it’s even impossible to eat: to carry out the everyday function of fetching food, lifting a fork to one’s mouth and then swallowing – let alone digesting. Similarly, it can be impossible to sleep sometimes. It feels as if everything has to stop while some other mystery process has to take place, perhaps.

Sometimes things are cancelled, sometimes offers are simply never taken up, sometimes things do happen but they are awful and I don’t cope. I can’t decide whether it is a day to talk myself into or out of something. I juggle with different reasons regularly and struggle to decide which reason it is each time.

There are four main reasons I can think of:
The Anxious Excitement Reason. I am looking forward to something so much that my cortisol goes bonkers and I experience the same symptoms as fear. Even when I know this is the reason I become anxious about my anxiety and can’t remember why I wanted to do the thing in the first place. Pulling out would mean an end to my symptoms and I would feel safe. This is usually the only time when I should consider pushing on through and taking a gamble with my anxiety but it’s a fine line and there are times when staying home really is best for my health. It’s a hard one to explain to people and is the one that causes the most upset. For weeks or months (even years) afterwards, it’s often distressing to try to deal with my decision. People simply can’t understand.
The Social Exhaustion Reason. I have already pushed myself through things that have drained me and overloaded me, and however much I want to do this thing (or not) I am exhausted and don’t have the energy to make it happen. It’s just not possible and I know I will have no words left in me. I may even be mute for a while.
The Uncertainty Reason. Some thing or things about the event will be so unfamiliar or out of my control that I can’t cope with all the unknowns and I can’t foresee how I will react to situations for which I haven’t planned. If I don’t know exactly how or when I will be getting home I panic about being trapped, for instance. I also fear my own performance and know I will probably not cope. Again I become anxious about my anxiety and everything becomes about trying to feel well.
The Meltdown Reason. For me this is a rare and rather frightening one. It comes like lightning, shocking me and terrifying me when it arrives out-of-the-blue. Rather like pre-storm heaviness, I can feel something building but I’m not aware of the extent of my agitation until something has gone wrong. And it can go wrong quite quickly. Because my concerns are so foreign to the rest of the world, I am not able to voice or communicate them, and I am left at the mercy of something extreme. Usually a fairly eloquent person, I find words in short supply while a physical and mental pressure bears down on me. For the sake of other people I try to find words, but they are all wrong and I hear myself say things I’m not thinking. They are just spare words. Spit words. Missiles. Somewhere deep within me there is a tiny guiding force telling me to get away from other people and give up on communication for while. This reason is complicated. It is an entity all in itself. Another character perhaps. It sits on the chest of who I am and who I want to be and what I want to do, and says, ‘No. No. You can’t move. You can’t do this, that or any other thing.’ The energy is different. It’s less anxiety and more frustration. My guess is that it comes after anxiety and is some kind of fallout I’ve stored until I’ve stored too much. It is perhaps a useful and healthy release to give my body a break from all the internalising I have to do. I know very little about what is happening. All I know is I can’t do anything until it passes. Fortunately it can pass quite quickly if I act. I hate it and I fight it. It always wins though. I have to give up my right to decide to push on through and give up my right to choice and simply let go.

The way I make choices, therefore, cannot be the same as for most other people. Sometimes I simply can’t make choices. I am not allowed to. The world as it is – as it was designed by other humans – is not mine in the same way it is for other people. I have to repeatedly stop myself from making any kind of long-term plans because I know I am not consistent.

So today I am missing something I was looking forward to, something I would have enjoyed. Returning to my captive animal analogy: some days a banana through the bars of the cage may be the most delicious most-welcome thing and I desire it terribly – so yes, the “It will be nice and you would enjoy it” argument is true to a point, but a day chilling out in the rainforest is even more necessary, and when all is said and done, I must bow to the instincts of the caged animal who has missed the world she was taken from and is not looking for thrills and enjoyable experiences all the time but for a peace that can only be found from following one’s instincts.

The times I’ve written about bad days, bad experiences, the bad stuff about having Asperger’s far outnumber the times I’ve written about the good days, the brilliant days, the mediocre days. And yet the good and mediocre days are the ones that really fill up my life. They are about getting on with stuff and are often really rather boring and normal to read about. I tot up minor struggles with noises, lighting, smells, busy shops, too many people talking at once, and live with anxiety daily if not hourly, but I accept that this is my life, this is my normal and I internalise and find ways around things. I cope, and my life is mostly boring and normal – and for that I am grateful. But I think it important to share with other autistics – and anyone else good enough to read this – some of the difficulties we experience, and try to put those crashing days into words so that people like me don’t keep on feeling we have no reference points for our lives and experiences. There’s stuff going on in our heads that no one understands anywhere near well enough yet. We don’t even understand it. It’s time understanding moved forward a bit faster, and what better way than reading about raw feelings and actual experience as it happens rather than only ever picking up a textbook written by experts who are not autistic, or a humorous novel based on mocking autism stereotypes?

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Honest to goodness, Anxiety to Asperger’s: a year of change

It’s a year since I wrote this difficult post about anxiety.IMG_6195
It changed my life. It showed me that it pays to be honest about your struggles and to think about why they exist. It eventually led to my Asperger’s assessment and a whole new way of thinking about myself and my life.
I have changed so much in twelve months. I don’t even look like that anymore. And the inside of me looks different too. It’s been a tough year mentally, and I’ve had some pretty bad times, but mostly it’s been very positive. The turmoil in my brain has, at times, been inexplicable. I’ve wanted to explode with frustration, to cry like a child when I look back at my life, to go back in time and change events – and in particular some painful interactions with other people, but I’m glad I’ve gone though it and it is gradually becoming less difficult. It’s hard to admit that – guess what? – there ain’t no quick fix. I’m stuck with this and these patterns in my life, but how much better to know what I’m dealing with than to keep expecting life to be easier and to keep expecting the impossible from myself. I know who I am now and I know how to make life a different version of easier – and a different version of difficult too for that matter. I’m learning to focus on a “different not less” tag and not a faulty tag. I’m learning where it’s important to make an effort and where it’s important to go easy on myself. Processing something as important as “you are not who you thought you were” is not something that can happen overnight and I think I will spend the rest of my life dealing with it. But it’s something I wanted to do and it’s something that has come with far more rewards than drawbacks. I think the most difficult thing has been dealing with preconceived ideas about autism and a feeling that people think I am broken, weak or inferior somehow. The stereotypes and lack of support and understanding make life more difficult than the actual condition itself. In itself my own personal version of autism is not a problem. Fitting myself around other people’s ideas and ways is the difficult part. Having a reason for that gives me new paths and helps me say goodbye to tired old rubbish. I have a better anxiety radar these days and I am learning – slowly! – to keep an eye on that radar. I can’t shrink my amygdala and rid myself of anxiety but I have spent a year getting better at recognising triggers.
So that’s me: Problems are BIG, worries are HUGE, conflict is ENORMOUS. I am UBER-sensitive and I notice things that other people don’t, and I have to decide what’s worth my energy, attention and upset and what’s not. I know I will keep getting this wrong because it’s constant hard work and I get tired and I make mistakes.

Life has been tinged with sadness recently as I’ve come to realise that a lot of my life that I thought I was in control of and was about me making decisions was not how I thought it was. I was led by my conviction that I felt different but there was no good reason for it and so things must have been going wrong because I wasn’t trying hard enough. I see how my social exhaustion and my fear of life, of the unknown and of my own failure got in the way of me being all the things I dreamt of as a child. I never went out into the world and found myself, I never became the primary or nursery school teacher I so wanted to be, and I never learnt to be more forceful with people and control the way my life went when I was younger. In short, I let people push me around and I didn’t realise it was happening. I guess people didn’t even know they were pushing me around because they had all the right skills to say “No” and assumed I did too. Occasionally I’ve found myself wishing recently that I could smash up my past and rebuild it.
But when I say “tinged” with sadness, I really do mean it. I am working more on the present than the past because that’s the only thing I can have some control over. What I have is good and it’s all the better for knowing that that big old amygdala was causing some big thinking and making things look more significant than they are (hmmmm… that’s complicated because when things feel enormously significant to the point of controlling your life then they are significant, but that’s for another blog post!)
Thank you to everyone who has stuck with me through this and not treated me like any more of a weirdo than I already was! And thanks to Elli​ for reading it (the original post that is) and giving me cause to think about myself a bit harder than I had previously been prepared to.

The Devil and the Deep Blue Sea

How Autism Burnout sits away from depression

Partly because of the immense gratitude I feel for all the concern and messages of support I received a few days ago, and partly because of my solidarity and commitment to my autistic readers, I felt a kind of duty to update my blog today. I also didn’t want to leave the last post hanging in the present because it was of that day and that day has gone.

After an online chat today with fellow aspies about autistic burnout and the confusion with depression, I have a renewed determination to get something, if not straight, a little partitioned perhaps on behalf of us all.

My last post 6 days ago (it seems like so much longer), was rather desperate.
But if I hadn’t written it down, I think I would have almost forgotten about that day – or at least quite how frustrated and paralysed I had felt. Soon after writing it I felt ashamed and embarrassed. How could I be so exposed? So powerless?
I was quick to move on and work on solutions for repair. I didn’t like that version of me and I didn’t post the piece to my front page but left it in the January archives to be forgotten. Nevertheless, I don’t regret writing that post. The difficulties we experience need sharing and airing and when we find others experiencing similar we feel a little vindicated somehow. So now I want to come back and share how quickly it was all over and how quickly I repaired.

One word I used to describe how I felt the following day was “stronger” – as if on the day of my blog post I had been somehow weak. But what keeps chiming again and again in my head is how strong I had actually been; how I hadn’t been weak at all.

I think it more appropriate to describe the way I felt as “battling”. You see, the very word “weak” must imply a lack of strength. A fisherman in a storm doesn’t wreck his boat because it or he is necessarily weak. A man killed by a tiger doesn’t die because he is weak. A grand old oak doesn’t become uprooted in a hurricane because it is weak. A woman doesn’t scream in childbirth because she is weak. Things hurled themselves at me, I fought, I became exhausted but I didn’t give up. I simply took some time to scream (metaphorically) and make it known that I wasn’t enjoying the experience.

What I was was honest.

As an autistic person, the main problem I have is actually telling myself to stop trying to be stronger. I am used to battling, used to finding everything hard work, used to being exhausted, used to having unexplained health problems. When I’m asked if I find something difficult, I don’t have the same reference points as the person I’m talking to: it’s all difficult. But I didn’t know that. I thought that was just how life was. Difficult is my normal.

What all this means is I have episodes or periods of burnout. And these episodes of burnout are similar to depression to look at from the outside. But it’s not the same. Not for me anyway. And, after having a couple of years being convinced I must be depressed, and reading other people’s experiences, and then eventually reading about autism, I can see significant differences – and not least in the solutions. I must add – importantly – that I’m not excluding depression. I can see how many people after years of struggling with autism are depressed, I know that depression hits people from every walk of life and I’m not excluding autistic people from those who might experience depression. I can see how depression and autism get mixed up and sometimes overlap. But they can also be separated.

I have anxiety. I have autism. I don’t have depression.
I get frustrated. I get sad, yes, but I don’t have the long periods of darkness, of despair, of the hopelessness that can be so dangerous.
I feel debilitated by social exhaustion. I feel overwhelmed by over-stimulation. I feel trapped doing things I can’t control or I can’t stop.

At the risk of sounding ungrateful, the advice people give me for dealing with depression doesn’t really work. And that in itself must be a clue.

I tried to think of an analogy for the way a burnt-out autistic person might feel and how the fix works, and the image of a hamster wheel came to mind (this might be because I saw one on TV last night!).

So let’s try this…

An autistic person pushing themselves for too long can feel as if they are trapped on a hamster wheel. They can run at good speed around and around and around. They’ll look as if they are doing well. But at some point they will feel like they really can’t go on any longer, and one of the first things you might notice is that they stop communicating.
A neuro-typical or non-autistic person might de-wheel, eat, have a chat with a friend, have a sleep and get back on again. When they do get back on (even if it’s something they don’t particularly want to do), they’ll feel the benefit of doing something else for a while and will feel re-energised by the socialisation. They’ll look for support from others by distracting themselves with chat.
Not so for an autistic person. Because of the sensation of never-ending movement we will find eating, sleeping and socialising difficult. Lights will seem too bright, noises will scratch away at us, and thinking clearly will become progressively more difficult. We will fear the hamster wheel and want to run away. There will be an overwhelming and overriding instinct that everything must stop and we must obey our instincts: get away from the noises, away from the lights, away from the people, away from the feeling of going around and around and around. Of course society tells us we must get back on the hamster wheel – so many of us do, but each time we do, we feel more and more debilitated and less and less able to function. The best thing to do is block out every single other thing in life and concentrate on the one and only thing we are not allowed to stop doing: the wheel. From the outside we look moody and unsociable but physically capable. This is because in order to concentrate on one important thing we have suppressed ourselves.

In my opinion this is where autism looks like depression and where it might, indeed, eventually lead to depression. But I think the significant difference is that it is caused. And there’s an almost formulaic process and reaction: Fighting back tiredness plus coping with sensory stimuli plus dealing with repeated socialising equals burnout.

When we were trying to work out why I was sometimes not coping with seemingly simple or enjoyable activities, I had some assessments with the depression and anxiety clinic. What they discovered was my reactions to questions (repeated over a period of time), and my attitude to life and myself did not fit the expected reactions of a person who experiences depression. But they were very much the reaction (and to the extreme) of an anxious person. My fear responses are so enormous and my ability to cope with life relies on so much hard work from my adrenal system that I crash every now and then. In fact I have to crash. Autistic people have to stop. I mean just stop. It’s complicated to put into practice because of modern life and the way society works but it is in fact very simple. It’s learning that and accepting that which are so very, very difficult. If you don’t know that it’s autism, you reach for something or someone to blame and depression is often the nearest fit. Sadly it’s often common to blame partners, friends, jobs and whatever is going on in our life right now too. The immense sensation that something is broken, something is wrong and something desperately needs to change, and change quickly, can have us ending relationships, packing in jobs and breaking valuables in our endless quest for a fix. Often a massive meltdown -including screaming, slamming doors and insulting loved ones, can give us just that fix we need, and leaves us with nothing but the all-important solitude we perhaps didn’t realise we were craving. It’s not the best way to go about it though.

My frustration at having to crash, stop, give up, back out, cancel and reorganise makes me sad. Sad: yes. And sometimes despairing. But like a bitter pill (and let’s face it, better than any actual pill), it works.

So, importantly, the fix is about letting go and being allowed to stop everything and not trying to add more and more in an attempt to make things better. The useful mood-lifting, adrenalin-giving activities we might get prescribed by our friends with knowledge of depression might actually be piling more on our already over-full to-do list.

What we/you/society needs to say to someone with autism burnout out is ‘You don’t need to do anything. It’s okay to stop. It doesn’t matter.’

And then sit back (sometimes at a safe distance 😉 ) and watch the steam escape!

When I felt the burnout last week, I did nothing for a day. Because we are all individuals, I can’t say what this period of “doing nothing” means for other aspies, but I do know that despite being called “doing nothing” it will be anything but. The brain will be very busy until it has offloaded. I wonder if it’s because we can’t kick out memories of recent events and conversations the way non-autistic people can or resign recent happenings to a deeper more distant part of our memory banks that this happens. We struggle to move on, to clear our thoughts and to wipe images from our visual memories. After a social event, for example, at which I may have performed very well and have enjoyed very much, I can still see the faces of people I have been talking to for hours or days afterwards. I can still hear the conversations, and certain spoken phrases will play out again and again in my brain. I can still see pictures on the walls, the expression someone made as we talked so that it’s like I’m still experiencing it. Perhaps this repeating means I need a longer period of processing and moving on than neuro-typical people. Maybe all autistics need a time for sitting still and letting our brain-wiring fizz out at as it crackles on at its own unique speed.

With this unique fizzing out delay, trying to continue to do things means we are adding more and more to the jumble and chaos already going on. And taking time alone is essential. Depending on the severity of the burnout and on the length of time for which someone has been coping, this time-out might be half an hour or a couple of days, but it essentially does not involve other people.

When I think of other people taking time off, I think of shopping trips at weekends, of drinks with friends on a Friday night, of meeting up with family on Sundays. I think of holidays in the sun with groups of friends and family, of restaurants, of airplanes, and all I feel is tired.

The only way for me to have time off is to de-clutter all the social activity I have already experienced and spend time alone. In the right situation I can often feel the release immediately. And the repair can happen quite quickly. This is one huge way in which I think this must differ from depression.

It should be so simple, shouldn’t it? I really hope with more awareness we can begin to make it more simple, more acceptable and more allowable because autistic people are misunderstood all the time. It’s okay to need our own thing, our own fix. The most common thing by far I’ve heard other Asperger’s women say recently is how difficult it is getting people to understand and how that has a knock-on effect on their own well-being, self-esteem and mental health. It’s not difficult once you’ve got it. It’s simply a case of accepting a difference.

With a brain constantly fizzing, we don’t get weekends off unless someone says ‘You don’t need to do anything. It’s okay to stop. It doesn’t matter.’

Not everyone will see the definition between austism burnout and depression I’m trying to make but if you can imagine a woman standing at the water’s edge, you can see how she’s not in the same situation as someone who is in the sea. She’s not in the water – she’s close – but she has her feet on the ground and she just needs to walk alone along the wet sand for a while.

Fight, flight – and the other thing

They say that fear and anxiety create the cortisol hormone that creates the fight or flight instinct. But as I sit here with my dry mouth, my thumping chest, my churning stomach, trembling limbs; with a propranolol tablet making it’s way down my gullet, a chamomile teabag brewing beside me and a clock telling me I should have been asleep three hours ago, I know there is something else:

Cortisol creates a third complex pattern of behaviour.
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It’s like a dark, cold black hole, a whirlpool of never ending directionless movement. I am trapped inside a place where neither fight nor flight are an option. It’s like the holding room where those decisions are supposed to be taken but a decision is never made.
‘Fight or flight? Fight or flight? Fight or flight?’

This is purgatory.

I don’t have the prickles of a hedgehog and an ability to roll into a ball until danger has passed, I don’t have roots like a tree and the certainty that I can keep steady until the storms have ceased. Instead I feel like a leaf: trapped and at the mercy of the elements, whirling and hurtling around. Alone, loose and at the mercy of things beyond my control. Only I’m not a leaf – it’s worse because I have a brain and I’m not simply at the mercy of elements that come and go – I’m at the mercy of recurring cortisol that I can’t switch off.
Pump, pump, badum, whoosh, whoosh, pain, breathlessness, pump, pump, badum, whoosh, whoosh, kick in the head, kick in the guts, pump, pump, pump, round and round, on and on.
I try to train myself. I learn about all the ways to relax, to switch off, to concentrate on other things, to breathe deeply. I’ve read about every trick in the book. But this is an old dog, this cortisol inside me. You can’t teach it new tricks. It’s dangerous. And that’s what scares me. It scares me a lot.

I’ve felt what it does to me immediately I begin to feel anxious. I’ve felt what it does to me a day after feeling anxious. I’ve felt what it does to me a week after feeling anxious. I’ve read about cortisol and how it damages the body and the immune system. And while the short-term effects are unpleasant, I wonder what the longer-term effects have in store for me and what is already happening.

Just looking at the time now not knowing when this will stop but knowing I will be tired tomorrow is upsetting me and stoking the fires in my belly. I am pulsating. There’s a kicking feeling in my head. My fingers quiver above the keyboard. And yet, I am not fighting or fleeing, I am merely drowning in this rotating hollow, going round and round again and again in a dark helpless predicament. Being anxious about when this will stop gives it more potency.

The trouble with this fight or flight theory is that it suggests a certain amount of enabling, of action. Yes, in times of trouble and panic and extreme anxiety I can and I do either escape from or try to battle my way through a situation to find a way out, but we are not wild animals and fleeing and fighting are not the only options anymore.

I wish I could run away from this. I really do. I wish I could battle my way out of it too. Alternatively, I wish holding on and sitting it out like a storm with a feeling of reassurance was an option. But there’s nothing to hold onto. This place is the loneliest, darkest, most helpless hellhole on earth. There’s no running, no fighting, just swirling.
You can see, perhaps, why depression and anxiety are so closely linked.

When I look back at what I’ve had to avoid in life to curtail these attacks, much of it makes me shrug. I don’t mind too much. I’d rather feel well. But I can’t avoid being human and having emotions and opinions, and I can’t avoid being part of this world. When the fight or flight instinct does kick in it might be best for my health to flee or fight, but it’s not best for other people so I hold that swirling mass inside my belly and it gurgles and churns until it takes me with it. It is worse at night of course. It feels like it will kill me and then in the morning I find I am still alive. Tomorrow I will need to take a trip to a world in my head where life is simple and bad things never happen. I will have to shut things out and shut off the concern. It’s become a habit, this rehabilitation period.

People like to tell me “we’re all the same”, “we’re not so different”, “we all have the same needs”, “everyone feels like that”. I know some of it is well-meaning so I don’t know what to say. But I don’t think every feels the same. I know everyone doesn’t feel the same. And I wouldn’t wish this on anyone.

I think the propranolol is working. My chest is not hurting quite so much. That’s something I suppose.

I’ll try one more chamomile tea and hope that writing this down has helped.


The Freaks’ Guide to Feeling Normal*

(*where both “Freak” and “Normal” are overrated)

shutterstock_91734881When I was a schoolgirl living at home, I was the only girl in the world who lived in a house with a compost bin and whose house smelt of tealeaves and orange peel; the only girl who had 2 teachers for parents; the only girl whose clothes were washed in non-biological washing powder and hung to dry in the dining room (oh, the shame!); the only girl who wore her sister’s hand-me-downs (even though my sister was shorter than me); who lived on a hill and not in a normal street and didn’t have any friends close by; who didn’t go to Greece or Crete or Spain or Corfu or the Canary Islands or the South of France on holiday, and instead who had to visit cathedrals; whose parents didn’t have a car and who had to travel by foot or bike or bus or train; the only girl who was tall and skinny; the only girl who had a room so small there was nowhere to do my homework; the only girl who bit her nails; the only girl who was shy; the only girl who had more books than pets in her home (don’t get me started on the pain of no pets allowed…!); the only girl with no brothers; the only girl whose mother didn’t run around with the hoover/shopping/cooking/ironing/washing going all at once and instead took Open University courses; the only girl who learnt two musical instruments and sang in a choir; the only girl who didn’t have all the most up-to-date electrical gadgets (I think we were the last people in the world to get a TV remote).

It was hard to put my finger on which of those major, major differences was making me feel like a freak but it had to be at least one of them. I spent a lot of time identifying differences and imperfections. I really was very different and awkward and sticking out like a sore thumb. Nobody ever knew about my distress, no one knew about my struggle to fit. I don’t think I could have verbalised it even if anyone had asked me to try to share my feelings. But no one asked anyway. They simply singled me out for persecution every now and then or waggled a finger at me and wrongly accused me of carrying an attitude or behaviour I didn’t recognise in myself. I was obsessed with how people were reading me and how they seemed to be seeing something I wasn’t seeing. I continued to internalise my intense distress and suffered with stomach aches and patterns of fear. And I continued to be secretly furious with my parents for creating the situations that made me feel such a freak.

Maybe if I could pinpoint where my parents had gone wrong I could try to be more like other people and perhaps I would be fixed. Perhaps if I put on weight and grew my nails and tried to look more like other people it would help? When I got older I could get a car and pets and biological washing powder and the latest gadgets and go on holiday to Greece and vacuum a lot – maybe even vacuum a lot in Greece… I would be brave and cool (not too cool) and have a tumble drier and teabags. That might do it. And I could make sure my children didn’t have to suffer the same horrors as I did. At least they wouldn’t turn out like freaks. I had to find out which significant difference that was happening to me, nay: was imposed on me by others, was making me feel so wrong and not right and all faulty and not at all fitty-inny. It was worth changing my hair colour to see if that was the problem – so I did that a few times. Quite a few. For years. And years. And then I would regret that and go back to light brown.

I could observe normal people, throw off everything that might mark me out as different and I would become normal. Surely? And then and only then would people let me in and I would be happy because I would be just like everyone else and I would fit. All gloves and puzzle pieces.

Did it work?
Did it Betty Martin…

I was disappointed that shaking off all my childhood hangups hadn’t worked. I couldn’t identify such striking differences between me and other people anymore. But even the security people in the supermarkets knew I was up to something and followed me around. Maybe I needed smarter clothes? Or a confidant stride? I never stole a thing in my life. I was supremely honest! Why did they get me so wrong? What was it about me?

But I didn’t give up. I made lists and plans and projects and visualised me being normal and worked out how I could make that happen.

I had the odd hiccup. I had to bash my head on a wall a couple of times. I had to smash up the odd clock and the odd mobile phone, but I’m nothing if not optimistic and determined, and when I make up my mind I’m going to do something I am going to do it. I threw off the odd panic attack and sudden unexpected headaches and the weird desires to scream and hide in a tree, and followed the design for a good sociable woman I had created for myself based on observations and well-meaning advice. If I was superbly terrified about an evening out all I had to do was drink gin to shut my brain up and grin a lot. When you’re young and pretty that seems to work.

“Operation: Normal” was taking longer than expected though. Twenty years after leaving home it still hadn’t been achieved. But I wasn’t giving up. I’d managed to fake it quite a few times short-term and that was giving me hope.
Until, that is, my father died and I was exhausted by everything and fed up with life for not giving me back what I felt I deserved for all my effort. And people – people were supremely ungrateful when I knocked myself out for them! Couldn’t they see how bloody hard I was working for everyone and how it was killing me? Why did I still feel it was not enough?

I shrank away from life. I stayed home more. I spent a lot of time reaching into places I hadn’t reached into before: places that had nothing to do with trying to be normal or trying to fit or trying to be liked. I learnt to be more still and more thoughtful and I learnt to say “No.” I had been doing things I didn’t want to do for years – things I had hoped would make me more accepted, things that would stop people from singling me out as different, and I had failed. I began to stop caring. Well… caring quite so much. Everything that had been reliable and consistent in my life since childhood had crumbled and I had to build a new version of me. I didn’t have the energy to plan how that version of me would emerge so I cocooned and let the rebuild happen by instinct and natural progression, and waited until I was ready.

When she emerged she was cautious and hungry. She was older and wiser and rather life-weary but ready for new things. This new me wanted honesty and ached for a life free from lies and pretences. I knew now how short and painful life could be; how there was no point wasting time on silly pretences, on images and appearances. No, I didn’t yet know why I was still different and struggled so hard to fit but it was time to be honest about how I felt.

But I still felt guilty for not trying hard enough. I should have mastered normal just like everyone else had. Other people must be trying harder, right? They were all going around completely shattered, close to a breakdown and hiding it well perhaps.
Despite this guilt, I found that some of my calmest, most peaceful and most healthy periods were those when I stopped trying. I allowed myself to do things that gave me these feelings again. It felt wrong and abnormal to be enjoying solitude, to feel so lifted by hours alone writing, to get a buzz of sheer joy when a social engagement was cancelled, but I kept returning to that which made me feel safe and whole and alive and satisfied.

What a confusing place to be though. What was wrong with me? Didn’t I like people? Was I depressed? I didn’t feel depressed. And I’ve always been very interested in people and wanted to fix their pain and make everyone happy. How very strange that the very things we might use to describe an unhappy person were actually how I was happy, and the things that made other people happy made me thoroughly miserable and exhausted.

Being honest gradually began to help: I found out that other people don’t worry about stuff as much as I do. I found out that stuff I find really hard they find really easy. I found that when you start to open up, it’s like turning on a tap and stuff keeps coming out. You find yourself saying things you weren’t expecting to say and you didn’t know you felt. You find you had been hiding things even from yourself. (Well, maybe you hadn’t, but I had.) And maybe that was my biggest problem: the hiding. And the pretending.

Talking openly and honestly is like picking up a paintbrush and making a picture: things become more whole and real and far clearer. It can get a bit messy and you can see the wrong things until everything that’s emerging is out there. But the fuller the picture, the better you can see what the story is and the better you can understand. You’re less likely to judge, misunderstand or disapprove if you’re made to look at someone properly.

So I painted a picture of anxiety, of hard work striving for perfection, of social struggles, of unexplained illhealth, of a weird craving to hide and be alone – and finding immense pleasure – and not depression – from that, of a life of misunderstandings despite my best attempts to avoid them.

And the picture emerged as a person with Asperger’s Syndrome – and some pretty normal traits and feelings for a person with Asperger’s too.

I had found my normal.

It wasn’t the compost bins or the pets or the trains. It wasn’t a shortfall in my effort. It wasn’t depression or brown hair (it’s pretty grey now anyway). It was nothing I was doing wrong at all. All that was wrong was the pretending and the secrecy and the fear and the absence of place to call myself normal and be my normal.

It’s seven months now since my assessment and I still cry with joy and relief at the clearer picture of my own version of normal that has emerged. I wasn’t getting it wrong. It was just the way I was. I still struggle with people’s expectations of me but I know now that they are wrong and I’m clever enough to build up a picture of what I can expect from myself better than any of the people who don’t fit into my normal.

It’s helped me to think of myself as in a kind of minority. Someone recently described females with autism as “a minority within a minority” because we are so sparsely identified and understood. Sometimes we feel our differences more acutely than they can be observed and it is up to us to tell everyone else but it is up to everyone else to listen because when we are allowed to be our normal we are joyful.

These days our house smells of tea leaves and orange peel and I wash our clothes with non-biological detergent. I even hang washing in the dining room sometimes. My poor children. 😉

If you don’t know you have Aspergers/Autism you keep trying to identify what’s wrong/different and trying to put yourself right. It’s exhausting. Finding out what makes you feel like that helps you repair and move on. And it helps you deal with others’ expectations too. I wrote this to try to explain because there is so much untold pain in an autism head.



Light and Seeds

IMG_1451This afternoon we have to go and see our youngest daughter’s teacher for a parent-teacher mid-term meeting/review thing.

I’ve been a parent for nearly twenty years and had my children assessed and summed up, and I’ve listened to many different approaches and opinions about their educations and development, about their attitude and their effort over the years. It’s not been consistent and, like most parents, we’ve learnt from the experience and ended up making up our own minds about our children. We are grateful for any information, we appreciate any praise, we smile politely at any advice, and we take what we can from it and discard what we believe to be misplaced or misjudged. We can see how we are not all always seeing the same child when we talk about one of them. In the past I’ve heard a couple of adjectives applied to my children by teachers that have really surprised me and which I’ve known to be false.

 

But this is the first time I will go to a parent-teacher meeting knowing that I have Asperger’s and knowing that my child may well have inherited those particular genes. That knowledge throws a whole other very significant ingredient into the mix that is our child – and perhaps our other children.

 

My children will carry my autistic genes. Of that I am sure. Any or all of them or none of them may have their own version of autism. They may simply carry some genes. Without formal testing I may never be one hundred percent sure about any of them. For now, all I have is a big bag of new knowledge and my powers of observation, and one heck of a lot of information under my belt after an incredible amount of delving, reading and paying attention to the world of autism. So far our middle child (our son who is 17) doesn’t seem to have my anxiety or my fears, but both our daughters have shown signs of inheriting my anxiety and some of my sensory processing difficulties and they have all three thrown up some interesting questions about the ease with which they can be squeezed through the narrow tube that is conventional education. It’s too late for me to discuss our elder daughter’s education with anyone now that she is nearly 20 years old – all I can do there is let her know that she carries my genes and has a chance of possessing many of my traits (which are not all bad, I’d like to point out!) but it is not too late to consider what part (if any) autism might be playing in our nine-year-old’s education and childhood.

 

What I’m wrangling with today is just how far that considering goes, and with whom to consider it. Do I wait until a problem becomes too great, until some sort of crisis occurs? Do I keep quiet and hope she “gets away with it”, “pretends to be normal” and hope she learns to shrug things off? Do I assume her father’s non-autistic genes have watered down mine sufficiently for her to be pretty “normally-wired”? Will she muddle through until fifteen until suddenly one day a teacher calls her “difficult” or “impertinent” or another child bullies her and by which time it may be too late to discuss Asperger’s and she may hate me for trying to? I remember how I felt about being told I needed glasses at fifteen. I really don’t think I would have coped with being told I had Asperger’s at that age. I’m sure I would have rejected it and hated anyone who tried to discuss it.

 

From my experience, nine is about the age difficulties begin to trickle in for a high-functioning autistic/ Asperger’s child, and it might be when differences start to be less forgiven by other children and even by teachers. I also know that outsiders can often be quicker than a family to spot differences – after all we are used to our own children. It’s also about the age we notice differences in ourselves, and that can cause us to crave to fit in and therefore become quite secretive about our worries. Fitting in and not being noticed are extremely stressful and hard work and I worry about the long-term effects not just of that fitting in but also of the repeatedly being misunderstood. My gut instinct is that my child has enough of my traits for her to find certain areas of life a bit more of a struggle than other children and that this might become distressing in her teens but that she hides them well now and will never have serious enough problems for teachers to think to consider autism without knowing it is a possibility. I also feel that if it is going to be discussed, sooner is better.

 

So today I am planning to plant a seed. I intend to merely mention to our youngest daughter’s teacher that I have Asperger’s. I’m actually quite scared because I hate talking about myself.

I want, while our daughter is at a school small enough and far enough away from the stresses of more serious formal learning in the future, for her school to know about the genes that she comes from and be ready for any challenges or fears she may face. I can’t guarantee their knowledge of autism will be vast enough to know what they are looking for. I can’t guarantee it will mean as much to them as it does to me. I can’t guarantee they will use Asperger’s as a potential lens to view any troubles or concerns (if indeed there are any). And I can’t guarantee that I will ever get her a diagnosis if one is needed in the future. But a huge wave of meaning came over my life with my own explanations of my difficulties and it would be unfair of me to deny my children that opportunity. And not only my own children but the people who are in a position to provide support. Maybe they’ve already struggled to fathom my child and this will throw new light on their understanding of her.

 

Part of the Furniture

Two old chairs sat side-by-side facing the window. Arms worn, seats sagging, covers bleached by sunlight.

‘We used to talk. We used to look at one another. I remember when you used to notice me. You used to ask me me how I was. You said I was beautiful. Don’t you remember? You never talk to me anymore,’ said one chair to the other.

‘No. Not us. We never did. That was the humans,’ said the other chair. ‘We’re just chairs you daft bugger.’

‘Why don’t they then?’

‘Why don’t they what?’

‘The humans. Why don’t they talk, why don’t they look at one another? Why don’t they say nice things anymore? Don’t they care?’

‘I think they think they are chairs too.’

A Chance to Shine

My modest return to Friday Flash. It seems I haven’t written and shared a flash fiction since December 2012!

This isn’t the first time I’ve given a voice to an inanimate object. A couple of years ago I wrote a very short fiction about a pair of shoes with their own opinions…


IMG_3390
An apple from the garden, sat atop the wooden kitchen table, all perfectly imperfect.
Alone in the half-light from the cookerhood lamps, it proudly glowed: its contours more strongly rounded by its halo, the two small, black bruises and the – as yet negliable – newly forming wrinkles hidden by the shadows.

‘Paint me,’ it whispered. ‘I’m still beautiful. Paint me before I die.’

A woman entered the room, switched on a single light bulb, remembered the apple she had rescued from the ground in the morning, and smiled now at how its middle seemed noble and self-possessed like a robin’s. She saw the asymmetrical left-lean of the stalk, the elliptical shadow pool, and the way the reflection from the light bulb beamed out midway where the red and yellow colouring met. There was something really palatable – comforting almost – about the form of an apple.

She remembered drawing and painting apples in school. Hadn’t she been quite good at still life? For the briefest moment she wondered if she would like to sit and draw this apple now. But it was late, and anyway what would it achieve? She didn’t have time for unproductive things like drawing and painting.

‘Paint me. I’m dying.’

‘Where’s Cézanne when you need him?’ the woman asked the apple, pressing her lips together in compunction, as she turned out the lights, shut the door and followed the stairs to bed.

The forlorn apple’s previously tight, satiny skin turned sticky and soft in the dark, warm kitchen. It had tried its best but it hadn’t managed to inspire her.

Maybe the stories it had heard on the tree about humans being creative and appreciating nature the way no other animal could hadn’t been true after all.



Backward Forward Thinking

shutterstock_135498428Somewhere out there, in a parallel universe, there are humans who knew that dragging coal and oil out of the earth was stupid, dangerous, dirty and unsustainable so they left it there and instead they developed products and technologies from safe, clean, sustainable sources, fought the NYMBYs and the luddites centuries ago, harnessed, wind, wave and solar power and will continue to thrive and renew for eons – long after we have fried.

It’s not too late to join them as a sort of sickly, recuperating, penitent relative with previous self-destructive addictions, trying to clean up our act,  but it looks like we’re not even going to bother because we still haven’t admitted we’re addicted and we’re in the wrong.

Well done to the wise inhabitants of that other earth in that parallel universe. I wish I and my descendants could join you.

Peace, please: this Aspie angst.

An open request.
I have Asperger’s, I have anxiety and I have acute hearing. If you sit in your van, behind our garden hedge, in the lane that only leads to next door – and which I only expect to see my neighbours using – having a loud conversation, just yards from my garden door, it feels as if you are in my garden. I can hear what you are saying and I feel I am invaded and not able to have my own conversations, my own thoughts, my own peace. You are not meant to be in my garden idyll – in fact you destroy my garden idyll.
I am not paranoid or stupid, I don’t feel threatened per say, I just don’t know you or why you are there – you are too close for comfort and I need you out of my zone of peace.

My anxiety will rise, I will pace and I will be unable to function properly.

I will start vocalising my concerns more and more loudly until you go away.

This is how it is.

I don’t ask for much. Please give me my peace.



No more Asperger’s stereotypes! Please!

Recently Asperger’s has become a bit trendy in books, TV and films, and I’m seeing a lot of the same ideas about behaviours and traits rolled out, and more stereotypes than you can shake a stick at squeezed and squoshed inside the poor characters, and the individuality and very humanness of aspies insulted and belittled.

In the last few days and weeks, I’ve had a run of simply being a human being and not having to think too deeply about my brain-wiring, so I’m not really in the mood for confronting the “no empathy”, “painfully honest” shit that’s been badly wallpapered onto everyone with Asperger’s – like we’re a bunch of weird, abnormal clones and everyone else is somehow so much more tactful and thoughtful.

BUT.

It is nasty, unfair and untrue, and it breaks my heart every time I’m exposed to said shit. Everyone else is not much more tactful and thoughtful and going around being all nice all the time. We are not two separate species: one with empathy and one without. It simply is not like that. 

I think about other people ALL THE TIME. I think about how my actions impact on others ALL THE TIME. I care deeply about people and watch them carefully and read them intently to gauge their feelings. Just like every other fucker on the planet I can let tactless things slip out occasionally – and when I do that I feel bad. 

Yes, it’s true I don’t see the point in lying when the truth is important. But, no, it’s not true I speak my mind all the time and unnecessarily offend people regularly. Yes, it’s true I can have trouble deciphering what people need from me when I feel their behaviour is coded. But this is cognitive empathy and not the same as emotional empathy and it does not mean I am unable to guess, to judge or to imagine how other people are feeling or to feel very deeply for what they are going through.  Nor does it mean I am unable to show sympathy, empathy, support or help work on solutions for other people. I understand that everyone is different and thinks differently and responds differently to situations; that people learn differently and need different approaches to things they are tackling, struggling with or dealing with, and I understand that might very well be different from things that might work for me.

Speaking for myself, the greatest problem I have is the strange codes and behaviours that exist in the neurotypical (non-Aspie) world, whereby people don’t say what they mean and don’t ask for what they want: they say things they don’t mean, they agree to do things they don’t want to do, they leave things out, and they approach things from an angle that is unfamiliar to me. Importantly, I find neurotypical timing to be slightly different from my own and I believe this is due to some challenges in processing more than one thing at a time. This timing leads me to be off cue, slightly disordered or slow in the behaviour others may be expecting, and people who have spent their whole lives shepherded by neurotypical behaviours (even other aspies) don’t see what they are expecting so make a immediate judgement that there is something lacking.

Neurotypical people, it would seem, on the whole are more likely to pretend. They are more likely to be two-faced. They are incredibly likely to read an autistic person wrongly and make an unfair or incorrect judgement. They are not better at empathy. 

But this post isn’t about widening the gap that’s been created to an extent by common misperceptions, it’s about trying to narrow it so what I want to say is this:
When you find yourself believing someone has no empathy, ask yourself how deeply your own empathy is running to have reached that conclusion. 

Tea and pills

IMG_2599I’m a real advocate of allowing people to be honest about the negative stuff in their lives. I’m a believer in recognising the balance between wonderful and crappy.
Unfortunately I often pick up a strong hint from people that, unless one’s life is truly truly monumentally crappy, we’re supposed to think positively even when we don’t feel like it and bound around joyfully saying only nice things and never complaining.
‘But look at those people worse off than ourselves who never complain!’

Bugger off.

Even when I’m feeling low, I can list the good stuff! I know what it is! I don’t need annoyingly cheerful people prodding me with their happy finger, or miserable bastards telling me I don’t have the right to complain.

I’m massively, massively exhausted today. And I have had to take a combination of painkillers so I can get through some bad period pains. And I fully intend to not be joyful or to waste any energy pretending otherwise like some irritating fluffball of false cheerfulness. I will still be naturally delighted by a butterfly or a new flower or my children’s senses of humour.

I have pulled out all the stops for my family recently. I’m not complaining about that. I have no regrets. But, despite a certainty that could I do it all again I would, I can’t hide the exhaustion. I can’t pretend it’s not there. I suppose you might say I’ve refused to “think Aspie” in the last couple of days or think about the needs that involves. And now Aspie and hormones are both here to remind me I can’t ignore either for long. All I want to do is curl up somewhere dark and quiet for a day and sleep and think and empty my brain of all the recent interactions and images that are playing over and over. (And maybe have someone bring me tea and Voltarol and chocolate occasionally…) But I can’t because I have to be Alpha Dog, Alpha Bitch and chief doer of the everythings for 2 weeks now to get us through the rest of the holiday. As much as I can organise timetables for our shop and organise time for the family and organise times a journey will take us and organise and organise and organise… I can’t organise exhaustion and I can’t organise energy. These days just happen to me.

I know that many people see time at home with the kids as time off but I see it as my job – particularly when I’m the only parent here because the only time I get time off is when my husband is contributing and easing the constant to-do list, and “what does everyone need from me?” tune that plays forever in my head – and it has to be him rather than anyone else because our responsibilities are joint so it’s not help – it’s our lives, and he’s the only one I don’t have to explain to. (To be honest, I’ve always failed to see how my life of washing, washing up, preparing meals, tidying, cleaning, vacuuming, wiping poo off toilets, restocking the fridge, picking up dog hair, tripping over miscellaneous gubbins, repeatedly tidying the kitchen, stopping regulalry to say ‘Oi! Pick that up’, ‘Stop that!’, ‘Clean that up!’ ‘Wash your hands’, desperately trying to find time to pay bills, answer emails, do the wages, get outside and grow and pick vegetables, walk the dog, drink cold tea, never getting an authorised break, working through period pains, feeling guilty if I sit down, and never getting paid for any of it for twenty years, is like a holiday to some people. I’m clearly doing it wrong. Or maybe it’s the not getting paid bit…? )

Brains that never switch off need calming by reducing the stimuli sometimes – otherwise there’s no such thing as time off. I’ve pushed other people’s needs to the front of my brain for 20 years – 25, if you count the years I forced myself to socialise as much as I thought I should, and I think the not emptying often enough has finally worn me out. Some days the only thing that anyone can do for me is leave me alone ( – it’s taken 44 years and an Asperger’s assessment to learn to say that and it still feels totally evil).

I don’t need advice or solutions, I just need to grump. I actually don’t think there is a solution.
I know the best thing I can do today is write things down instead of letting them whirl in my brain, find something nice for our youngest to do, so I can ease the constant guilt, and aim for a rest sometime this afternoon by suggesting a DVD later. It won’t solve anything but it might keep things from getting any worse.

I don’t want to not have what I have, I don’t want to not have my children. I don’t even want someone else offering me anything. Dealing with communicating or organising with another person when I feel like this makes my head spin and exhausts me further. I just need to complain before I get up off my arse and carry on!

I am wading through treacle today but the treacle-wading boots fit only me. If you want to wave and offer a supportive glance as you run past me wading at 2 metres per hour then please do but don’t offer to discuss how I might do this any better/faster/more efficiently, and don’t ask me to explain why I should dare to suppose that my apparently charmed life is so difficult sometimes.
It just is, Dear Reader. It just is.

Rivers, chasms, rocks and balls

shutterstock_152045750There are many days when I feel life is a combat; a clash: it’s about all problematic differences and inexorable imperfections. I don’t go looking for them – they go looking for me. These differences come and get me, bash into my safe world and make it unsafe. I don’t want it but there’s an adversarial edge about me. What I actually want and what I feel I am really looking for are similarities and sameness for comfort. But on days like these there’s a sense that my difference and my way of looking at life is a chasm, a great, hulking, massive mile-wide fissure between me and everyone else. I’m desperate and separate, and longing for the most familiar and recognisable people and beliefs so that I may latch onto something secure. I feel a need to be fully understood and yet I am aware that that is not possible, and it’s so tremendously heartbreakingly painful. People I know let me down by not being exactly as I need them to be and not saying exactly what matches my thinking. I need them to fit – and of course they can’t (and why should they?).

When I look back on days where I’ve felt this way, the me from the outside – the me who has made it through and has shrunk the chasm, feels so protective of the me who was crying for help and clambering over rocks on the other side. I want to tell that me how well she’s doing, how she must hang on, and how of course the fight is as big as it seems but that fight is not necessarily always with other people – it is with the chasm. I wish I could reach out and help her up and over and out of her distress.

But there’s a sense on days like those that rejecting people would be easier. Just let go of everyone and fall/fly/run – depending on my mood, and be free of contention. People are contrary, oppositional, and cause conflict. I don’t want the conflict of contradiction or unexpected words. It makes me feel unsafe. I want to be offered a hand, but would I take it? Would I trust it?

This is autism. This is how the part of autism that cannot cope with change, unfamiliarity and difference manifests in me. It’s not about prejudice or discrimination in the way a person with racism or hatred would see difference. It’s more about familiar thinking and familiar behaviours, similar likes and dislikes, similar needs and similar struggles. And it’s about feeling that people are doing and saying unnecessary things and adding to my distress. People simply seem more cruel and less warm. My ingenuous detector becomes highly discerning and there is very little I am able to trust. It’s similar to childlike intense distress at not being fully understood and knowing the adult brain can’t see what you are seeing. But it’s a grown-up, dark distress that can only deepen with the realisation that outsiders are unable to validate or comprehend your distress. I can feel as different from other white, forty-something western women with homes and children as it is possible to feel if they are not looking at the world in a similar way to me. And while I’m being so apparently oh so the same as everyone else the river of difference keeps flowing, wide and fast and keeping me separate.

Then when the time has passed and the difference waters are calm, I am calmer too. I feel guilty and am quite awkward about being so at odds with so much of the world. I see how I was irreconcilable and possibly inconsolable. I want to love and be loved and mend fences. I am filled with intense amicability. And yet I am full of fear for when it will happen again and doubts about who will hang on through another earthquake.

What I am trying to fathom out now I am over the latest chasm is whether these chasm days are necessary? Whether, like autism meltdowns, they are an obligatory release and rest from social play? Does all the fitting and understanding and placating take its toll on the autistic brain so much so that we need compulsory rejection days? Is modern life insisting that we continue to socialise, and function on a constantly communicative level when really what we need is to retreat? Is my brain marking out all these differences as oversized predicaments to get me to withdraw?

If there’s one thing I’ve learnt in the past few months it’s that I must withdraw and I mustn’t fight that need to get lost in the wilderness. Other people’s everyday social behaviour is like a tennis match to me. I have to remember to get out at intervals and stop letting the balls hit my head because it ruins it for them and it hurts me.
It’s a lonely place over the chasm, and the urge to curl up and weep is huge but as the world becomes noisier and less and less private the opportunities to do just that become fewer, and rather than wish I didn’t have to go there I fear for the times when I – and those like me may find we can’t escape for our solitary climb in our mind or in our own backyard.

Today the differences are not looking for me and I am not stumbling over rocks. I am not caught in a tennis match. I feel my heart is huge and the chasm is small. I am appreciating a view from my always slightly different angle on the world. I am not looking for people to only say things that make me feel safe, but I think I appreciate this feeling all the more for knowing so well what it’s like to be ripping my nails out trying to hang on.

I think autistic people want and need their right to position themselves where they want in the world, to look on the world with a knowledge of difference and to have that view validated, but we also need the offer of a hand up when we think we are slipping.



Internal talking to

fraught
THE WORLD IS NOT TESTING ME: THE WIRING IN MY BRAIN IS TESTING ME!


THE WORLD IS NOT TESTING ME: THE WIRING IN MY BRAIN IS TESTING ME!

THE WORLD IS TESTING ME!

THE WIRING IN MY BRAIN IS TESTING ME!

I’M ANNOYING EVERYONE!

EVERYONE’S ANNOYING ME!

IT’S A BIT OF BOTH!

THE WORLD IS TESTING ME!

THE WIRING IN MY BRAIN IS TESTING ME!

IT’S A BIT OF BOTH!

OKAY!

DON’T PANIC!

ERM…



Today’s thought…

shutterstock_170125076I’ve been thinking about this obsession with looking younger. I just had a spam email advertising looking 10 years younger in 10 minutes. I don’t actually want to look any younger. I like being a grown up. I don’t want to walk around with my husband looking like he’s my father. I am proud to have kids in their late teens and to look like I’m old enough to be their mother.
I have no desire to look like an expressionless, startled, immature, unexperienced child or object. I like looking experienced, less threatening, and I like how other women chat to me when I’m shopping. That never used to happen when I was younger. I like how my sexuality has developed, settled and become a part of who I am instead of a feature.

Yes, it’s nice to look and feel healthy whenever possible but I certainly don’t want to go back in time. There’s a reason why I look like I’m over forty – and that’s because I am. It fits.



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. 

Peeing Standing Up: the trouble with autism “awareness”

The trouble with Autism “Awareness” 

Where is the integration, the facilitation and the understanding? 

People say they’re “aware” but they don’t facilitate the differences, and open their minds to how life could be so much easier for us. This is why I see acceptance as so much better than awareness. 

Being aware but not providing means for autistic people to function is like expecting women to use urinals. It makes us seem more faulty than we are because we’re always struggling with how to cope with systems that don’t include our needs. 

A lot of mental health problems in autistic people are as a direct result of living the wrong life. 

How about thinking; ‘I can see how this might not suit you. You shouldn’t have to do this’ ? How about asking what you can do to make life more comfortable rather than assuming  there is something wrong with us

I originally wrote the opening comments above in a group for autistic women. We are diverse, interesting, wonderful, inquisitive, emotive women from all walks of life with vastly different experiences of life and vastly different personalities and opinions. The support and acceptance between the women is truly lovely. We have lots in common and we have lots not in common and there are heated disagreements but I’d say the pervading themes are of frustration at a lack of understanding and exhaustion from living in a modern world that doesn’t try to accommodate us or alleviate our pain. 

More non-autistic people are pleased with themselves that they are now “aware” of autism, and – bless you – you all “Love someone with autism” 😖 … thanks for that… but that doesn’t mean more people understand or listen or are prepared to challenge themselves on their own actions and assumptions. 

Cooling, Calming and Collecting

I’m taking some time away from social media. I will continue to need to take photos as I have always done and I will put them on my Instagram page – because for me this is an important part of living and recording life – but I’m turning off all notifications and deleting a few apps from my phone for a while. A run of negative stuff has put me on a back foot and I need to know how I really feel and not only how I feel when I’m all triggered and anxious. I know my feelings are valid but just what I should do about them I don’t know. I’ve had a lifetime of absorbing these things and making myself ill and I’m not sure I can do that anymore. 

It takes a lot of determination for an autistic person to change their thinking from negative connotations about their brain wiring to ones of self-love, self-respect and self-acceptance. Indeed, some people never get there. I did get there but it is a ceaseless mission to keep fighting a society that triggers the negatives and the bad thoughts and the prejudice. I am smart enough and happy enough to know they are all false and there is not a faulty gene or faulty wiring – it’s just a way of being human and I am fine with it but the world still is not and it is still triggering my anxiety and still asking me to fight back. 

I’m tired. 

So I’m going to go away and be me and be happy about that and the negative shit be buggered. 

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.