Hibernation

By all accounts, hibernation is a painful process.

Mythologised by hopeful humans, we read it as an idyllic time for animals, when they get to eat as much as they like, pile on fat, and then slumber joyfully for months, missing the winter entirely. No cold, no depression, no dark thoughts. Just endless, delightful sleep. Every hibernation is a fluffy dormouse or a podgy black bear curled in its den, cute and inviting and perfect.

"Grizzly just wants to sleep" by Corin Garnett-Law is licensed under CC BY-ND 2.0

Except it’s not. Hibernation isn’t really sleep. It isn’t really wakefulness. It’s described as an ‘energy saving period of extended torpor’ – which sounds a lot like depression or a bad bout of poor executive function. It’s a kind of waking nightmare of sleep paralysis, from which you have to rouse yourself every now and then to make sure you don’t die – ironically, so you can get a chance to sleep.

That resonates with me. Winter as a waking nightmare. Winter as a time when you’re trapped by the cold and the weather and the limitations of your own body and mind. Winter as a time when you lie in bed or sit on the sofa desperately wanting to do something, but just unable to move. It’s an inability to get the car started, an inability to strike a spark to make a flame. The world is there, but you can’t touch it, grasp it, and let you take it in its flow.

Today the weather is bright and sunny. Today is the first day in many months when I’ve felt able to write a blog post, the blog post I’m writing now. Today I feel able to put away piles of washing, do the washing up, make phone calls. Ironically, I also feel under the weather, so while my mind is willing my body doesn’t agree. Coughs and colds come hand in hand with grim weather and shorter days.

So, today I have woken up enough to realise that I do hibernate through winter. I don’t hibernate like a dormouse in a children’s story. I hibernate like a mammal who puts its head down and just tries to survive through winter, while the demons batter at the doors of its mind. I wake up every now and then, sometimes enough to scream at the darkness, sometimes enough to feel that I might be able to face it. Sometimes I look up and realise the days are getting longer. Sometimes I feel like there will never be long summer evenings of benevolent warmth.

Pancake day, Easter Sunday, May Day. These things will come, with creeping slowness, with creeping inevitability. When summer is here, I will no longer be able to imagine the darkness and cold. I will be alive again.

Little Things

Photo purely for decoration. This is Florence.

When I'm low on spoons, it's the tiny little things that are hard. This week I'm low on spoons. The end of the school year, the end of my 11 year old's time in his amazing Autism Resource in primary school, school trips left right and centre, endless migraines.

So it's the smallest things that are hardest. Why? I don't know. I just made myself a cup of coffee, but I was almost out of skimmed milk. There's a new bottle of skimmed milk on the top shelf of the fridge, but getting it down and breaking the seal is just too much. Physically I could lift it down, I could break the seal - but mentally I can't. Mentally I'm unable to reach out and start a new thing, to move on from the old bottle to the new. I can walk into the kitchen, fill the kettle, get a mug, and put instant coffee in it. (Thank god I didn't have to open a new can. Sometimes I can't have coffee if I need to open a new packet, because it requires finding a packet, finding scissors, finding a peg to put on the open packet afterwards.) I can pour on the boiling water, open the fridge, add the milk. But I can't open that new bottle of milk. Sitting here, writing about it, I don't understand myself.

Outside, the rain is tumbling down. The world is irritating me, from the very large to the very small. The band of my fitbit, no tighter than usual, is cutting into my wrist so much I almost can't bear it - but I can't take it off because it won't track my steps, and I will feel as if I have no control over my day. The carpet before me is sprinkled with dirt, but cleaning it would require going and getting the vacuum cleaner from where it lives, attaching the tubes, plugging it in, and exposing myself to that awful drone. I can't do it.

My bra strap is irritating me. My dressing gown is irritating me. I lack the ability to go and change my clothes. It's not laziness. It's a kind of mental paralysis that perhaps you can't understand if you haven't experienced it. My hair is irritating me. I've managed to brush it, after a week, but it's still catching on the chair behind me. I'm more likely to throw something than move the thing it's catching on. Why? Who knows.

But I can write a blog post. What's that all about? I have no way to explain why I can write a blog post but I can't open a new bottle of milk. Why I can write a blog post but I can't engage in online conversations. If I can't understand it, I don't know why anyone else should be able to. If you can't understand the reasoning, at least try to understand the effect.

You Probably Don't Know I'm Stimming

Stimming is that weird thing autistic people do, isn't it? Maybe you don't know what it's called, but you know what it looks like. Hand flapping. Oh, yes, those weird autistic people, they go around flapping their hands like a frustrated seagull?

"WARNING: JAZZ HANDS" by waldopepper, licensed under CC BY-NC 2.0 

No. Well, yes. Yes, some autistic people flap, and it's not a bad thing. It's just a way of stimming. In fact, flapping is so identified with autistic people that in the early days of getting diagnoses for myself and my children I thought that we wouldn't be diagnosed, because we didn't flap. News flash: you can be autistic without hand flapping and lining up your toy cars. You can be autistic with these things too, but it's not an entry requirement for the club.

I didn't even know that I stimmed, yet I have stimmed all my life. Basically, stimming is self-stimulating with a sound, a texture, a sight, anything sensory, in a way that helps you focus and ground yourself. It helps you concentrate. It helps you calm down. When I walk past an iron railing fence brushing my fingers almost painfully along the rails, I'm stimming. The more worked up I feel, the more anxious, the harder I press my fingers, until the pain pushes away the anxiety. When I brush my fingers over velvet or corduroy, I'm stimming. When I bury my nose in a flower and inhale, I'm stimming. When I find myself repeating a particular phrase or song lyric over and over, or listening to the same song again and again, I'm stimming.

You can buy stim toys to fiddle with. You can buy rings that turn on your finger, fidget spinners, clickers, all sorts. But a lot of us - especially women, I'm guessing, who learn more to mask - do these things so subtly you'd never know it was happening. I've never bought a stim toy but I will run my fingers repeatedly over my phone case or repeat song lyrics in my head. If I'm fiddling with my phone while you're talking to me, I'm probably stimming so I can stay focussed. I'm not being rude.

When I'm walking along holding my thumb so tightly inside my fist that it aches, I'm stimming. It's the most frequent way I stim. Sometimes I have to do that to relax enough to fall asleep at night. It's like a tiny hug for your thumb. And if I'm walking along the street hugging my thumb because urban streets are overwhelming, you probably won't notice, unless you're really observant. I don't 'look autistic,' but there I am, out in public, subverting your expectations with my secret stims. I don't look autistic, but there I am.

The Repeat Prescription

It’s one of those days where I wake feeling so low, so anxious, I feel dizzy. The feeling of it is like a poisonous flower blooming in my chest, somewhere just under my ribs, pushing up into my throat. Everything is hard. Decisions are hard. I leave lights off because the decision to press the switch is too much. I go into my routine, put the coffee on the stove, start to make my lunch. Although I’ve been awake for an hour it’s been impossible to get out of bed until now. Now I’m up, I’m clumsy and things spill. I forget which spices I always put in my lunch. I forget where I am in the process, and find myself staring into an open cupboard when I’ve already got the bowl I need.

The cover of one of my books*

I have three antidepressant pills left. I should have organised my repeat prescription a week ago. But that’s another mountain to climb. You’re not allowed to phone the doctor for repeat prescriptions. But I live five miles away from the surgery, I don’t drive, the bus is a mile and a half away, infrequent, and a whole social challenge of its own. I could post my prescription, but the post box is further away than the bus. The post office to buy the stamp is further still. And I haven’t mentioned the problems I have with posting things. It’s some kind of autistic issue. An executive function issue, the crippling problem with communication. That old thing. But I can’t phone for the prescription because even if I explain that I am autistic, I have problems with executive function, I don’t drive, it won’t be enough. Explaining will be excruciating; and I’d have to explain every time I phoned. Using the phone is an excruciating experience in itself.

I have three days of antidepressants left, and yet again I’m going to have to rely on a family member with their own crippling problems to sort it out for me; to physically drop off the prescription and then pick it up in a few days. I’m going to run out of tablets. I’ll feel this crush of anxiety and depression even more strongly, and sorting out the problem will become even harder. Taking the walks which help me feel less depressed will be harder. It will be harder to make the decision to get out of bed, to switch on a light, to speak, let alone to organise the impossible task of getting the prescription I need.

This is being an autistic adult, a woman with a Masters degree, a writer of novels, a woman who is bringing up three beautiful children, who can be eloquent and persuasive and can turn her hand to many things. It is running out of antidepressants, because communication is so damn hard.

* re the photo. I don't have the wherewithal today to search for representative photos, creative commons rights, and so on. Nor to work out how to write this as a picture caption that doesn't mess up the formatting of the entire post. So this is the cover of one of my novels, instead. It's a good book. It's available on Amazon.

The Toothbrushing Breakthrough

After twenty years or so of adult life I feel like I’ve finally cracked the whole ‘brushing your teeth’ thing. For context, my dad was obsessive about this; making us brush every morning and evening and take fluoride pills too. Brushing was almost a religion in our house. It was never missed.

But when I started taking responsibility for my own brushing it just drifted into nothingness. After all, my teeth don’t ever feel that dirty and I’ve never had a single problem with them. No fillings, no work, nothing. Every time I went to the dentist they’d say, ‘You’ve got no problems, but you should brush your teeth more often.’ More often than, for example, once every couple of months. For the sake of my gums, he would say. And I’d nod and agree, and then go home and just wouldn’t do it.

Photo from Flickr by William Warby. Creative Commons..

I hadn’t really realised that brushing is a sensory and executive function nightmare. Some autistic people (like my dad) are great at routines. Some are not. I’m awful. I have to keep to rather nebulous seeming routines; if I don’t get my after dinner cup of tea within about ten minutes of finishing my dinner, for example, something builds up in me that makes me want to jump out of my skin. But I find day-after-day self care routines oppressive, and terribly hard to stick to. So that, combined with the sensory hell of the brushing and the intense sting of the toothpaste, meant I would just never do it.

Then my husband got an electric toothbrush. I’ve always resisted electric toothbrushes. It seems like an unnecessary waste of energy. But – BUT BUT!! – I discovered a wonderful thing! It does all the thinking for you! I never realised my tooth brushing issues were to do with executive function, but I swear they are. How long do I brush for? Am I doing it right? Too long? Too short? Am I focussing on the right areas? Brushing hard enough? Softly enough? It doesn’t matter! This thing lets you brush one quarter of your mouth, doing all the work for you, and then it vibrates to tell you to move on to the next quarter. And so on, until it’s all done. I don’t have to worry about anything. The only sensory issue is getting over the vibration, which is not great, but I’m getting used to it, and it only goes on for a set amount of time. I’m now a toothbrushing queen! I brush every evening without fail. I’ve been doing it every night for about two months now. I haven’t missed a night. My teeth feel clean all the time.

And this, dear children, is why knowing you’re actually autistic is such a wonderful thing. Because it gives you context for why you fail at the simplest things, and helps you work out ways around it. And we all lived happily ever after. The End.

A New Diagnosis

This is an attempt to process my feelings. This is about how there is no one autistic type. This is about the Autistic Unicorn. We all know that unicorns are a myth, and yet we persist in pretending they exist. The same is true of the autistic type. There is no one autistic type. There is a multitude of characteristics and co-morbids which come together in unique combinations to make every autistic person unique. So in society there is the Autistic Unicorn. There is the myth of autism, and there is the reality.

For a few years we’ve been a family with one autism diagnosis; George’s. Then I got my own to go with his. This week we achieved our third; Oscar’s. (Please remember, these are not their real names.)

Oscar is my first-born, and I’ve always felt that he was unique in some way; unique outside of the umbrella of everyone’s intrinsic uniqueness. He was a baby who never put anything in his mouth, a baby who didn’t babble, a baby who would actively fight to keep himself awake by scratching and striking at his own face. But he matured into a child where so many of those things that made him unique were kept under cover. He has always been very discreet in his difference. Quiet. Polite. No trouble at all.

George’s autism is obvious. When he can’t make a choice in a shop he ends up lying on the floor having a meltdown. He attends a special ASD unit in school because no one else can teach him. If he’s subject to attention he will hide under chairs. He will shout or scream when he becomes too frustrated. One can point at him and say, yes, there is an autistic child. He isn’t like every other autistic child, but you can still place him under that umbrella.

Oscar keeps his head down. He generally does what is asked of him. He complies. He dresses himself in the morning. He can make a choice as to what he wants for breakfast. He acts as the diplomat between his brothers. He can go up to workers in the supermarket and ask where something is. He can hand over money in a shop. He can function.

My conviction for a long time has been that he is autistic, and my fear was that I was the only one who could see this. I was the one who had observed him intimately from birth, who could add up the clues, and who could understand the difficulties that he hid. After all, that was my own mode of autism. Head down, don’t make trouble, continue being bewildered and let down by the world.

We waited a long, long time for his autism assessment, but finally it came. I went in armed. Child health record, school reports, speech therapy reports (as a young child he had, at times of stress, a severe stutter.) I spent the whole interview explaining myself. I know it doesn’t seem obvious, but… We went through what he was like as a baby and small child compared with what he is like now. Sensory issues. Communication issues. Development issues. My concern was that his autism was so hidden that he would suffer in school. My concern was that it was so hidden that he would be turned away.

Meanwhile he was undergoing tests in another room, tests I had done during my own assessment; a puzzle to put together, a book to read and describe, a story to tell with inanimate objects. He was intensely anxious about this situation. Perhaps that helped, in a way, because his autism became more obvious. Stimming, becoming non-verbal, becoming very discomforted by the attention.

In the end we all came together for the decision. They have streamlined things so instead of waiting for weeks a group of people do the assessment and then make a decision on the day. And they had decided he was clearly autistic. Not just that he was autistic, but that it was obvious that he was autistic. It shone through. They went through their findings and he ticked every box. The relief was overwhelming. Finally everyone else had seen what I saw. We are still processing this wonderful news. Now he can get help in school. Now he can understand why he’s different.

When someone asks why there’s an autism epidemic nowadays, here is your answer. Here are the people who spend every day passing as neurotypical. The people who manage just well enough in school and society and the world of work, but who, under the surface, are suffering depression and anxiety and that terrible sense of not being good enough, not fitting in, just not being right. When we recognise these people the statistics for the presence of autistic people go up. But we have always been here. We have been misdiagnosed or ignored or shunned or misunderstood. But we have been here. It’s just that now our voice is louder.

An Open Letter To...

We were friends. From the first moment I saw your profile online I thought you were amazing. You were interested in amazing things. And our interests overlapped – Star Trek, Anglo Saxon, the Celts – but they weren’t identical. We liked the same things, but not exactly the same things about them. You were an artist and a writer and so was I. Your art got better day by day. Your writing was amazing. When you were obsessed with U2 I shared your obsession, got into music I had never imagined liking. I read your amazing novel. I dedicated a novel to you. We collaborated on a story which linked your novel to mine.

We became facebook friends. We interacted daily, exchanging banter, laughter, support. I spoke to you on the phone – and anyone who knows me knows how scared I am of talking on the phone. You watched my children grow up. I watched you turn from a sixteen year old schoolgirl to an adult with a focus. We exchanged letters, art, handmade gifts.

We even met up. You were from California, I was from Wales. How far apart could we be? But when you came to Dublin I overcame all sorts of fears and took the ferry, and we met outside Trinity College. I walked around Dublin all day with your siblings, visiting the sites important to U2. We hugged, we said goodbye, we both came home.

You disappeared from Facebook because of reasons, but we were still friends. We saw each other on Tumblr. You went to art school, and got into punk and feminism. When you started to experience gender dysphoria I thought perhaps it was because you were so deeply involved with extreme feminism. But pretty quickly it was obvious it was more than that. I supported you. We exchanged so many messages about your fears and hopes, and about the practicalities of becoming another gender. I was experiencing my own journey of discovery, realising I was autistic. It felt like something else that we shared – self discovery, self-advocacy, finding our places in the world. You started wearing a binder, using gender-neutral pronouns. You were afraid of coming out to your family, but you knew the path you wanted to take.

Eventually you got your top surgery, you were taking T, you were transforming to the body you belonged in. You changed your name. You changed your pronouns to he, his, him. And I was your friend. I was always friends with your mind. Perhaps I was in love with your mind. How often do I really gel with someone?

And then you stopped talking to me. I messaged you a few times, because I missed you, and your replies got shorter, and then stopped entirely. Your tumblr account vanished. You blocked me from Instagram. You disappeared. As an autistic person I found this so incredibly hard. I become intensely loyal to my friends. I would give you a home if you were homeless. I would talk to you at any time if you needed me. I would do all I can. If you came back now I would only be glad.

For an autistic person, communication and friendships are incredibly hard. They’re minefields. I question every utterance, every message, in case I’ve said or done the wrong thing. So what did I do wrong with you? I’m afraid I pressured you at the wrong time. By saying I missed you I drove you away. I think this is the closest I’ve ever had to a breakup. I’ve never lost a friend who mattered so much before. I told you I missed you, and you turned off.

But I do miss you. I will always miss you.