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.

The Empathy Myth

The most common and hurtful autism myth is that autistic people have no empathy. We go through the world blinkered, unconscious of others’ emotions. This perceived lack of empathy can feel very hurtful to friends and loved ones, thinking that an important person in their life doesn’t care for them.

But I promise you, we do care. Most autistic people suffer from – and I choose the word suffer deliberately – a crippling surfeit of empathy.

For many autistic people, coming into contact with another person’s pain or misery or depression is like submerging in a pool of water. If you open your eyes your sight is blurred. If you open your mouth your lungs fill with water. We are so conscious of the other person’s feelings that the only available option is to shut down, because how can you function when you are drowning?

The world is full of situations that demand empathy. The people around you have their own problems and issues, from simple frustration at not being able to find something, through falling down and grazing a knee, to deep depression or grief. The frustration or anger spikes inside you like little darts of fire. The grazed knee makes you grieve for your child’s pain. The depression enters you and swells inside you until you can hardly breathe. And then you scroll through social media and one friend is traumatised, another is anxious, another is in debt. All in pain and all often out of reach for any meaningful way to help. In between the personal peaks of empathy are the impersonal ones. The cats in the high-kill shelter that need homes before they’re put to sleep. The dogs being skinned alive in China. The person being deported because of world panic over terrorism. The Muslim who has had their house set on fire. The gay men in Chechnya who are being beaten to death.

Perhaps some people can fine tune their responses to these things. Perhaps they can choose what to empathise with and what to dismiss. But if you are autistic you scroll through the page and you are feeling one person’s crushing depression, you are anxious about the other person’s ability to buy food for their children. You imagine yourself lying on the ground as boots slam into you because of who you love. You look out through the bars of the animal shelter cage. We can’t always fine tune, and it’s just too much.

The only option is to shut down, and that’s where the myth begins. We might seem as if we’re not listening. We might seem as if we don’t care. But submerge a person in a pool of water with a pair of tweezers and tell them to extract seven specific H2O molecules and only pay attention to them. Tell them to do it before they drown.

We don’t always know what to do with our empathy. We don’t know how to give the right monosyllabic sounds of reassurance. We want to help practically – to fix the situation instead of giving what seems like meaningless comfort, even if ‘meaningless’ comfort is what the person really needs. So often there isn’t anything practical that can be done, and we feel as though we were drowning, so we get out of the water and try to breathe again.

When you think we aren’t caring, perhaps we are just trying to breathe.

Invisible Autism

How do you explain just how hard autism can be when you show few obvious signs of being autistic? Honestly, how do you explain this to a world of ‘but you don’t look autistic,’ and ‘but you’re high functioning, right?’ and ‘well, I don’t believe in labels’?

So you walk into a restaurant with a group of friends or family. There’s maybe five or six of you round the table. There’s music in the background. There are people talking, clinking of glasses, scents of food. You’ve never been to this place before. What’s on the menu? What’s the food like? Where’s the toilet? Your anxiety is rocketing. And then everyone at your table is talking. You’re trying to take part in the conversation, but you’re not quite sure how to interact. Are you coming in at the right times? Are you talking too much or too little? Someone’s said something at the other end of the table btu in the mess of vcoies it’s ruully hrad … what they … ashmumbal fer nosit … shum … shlush murmm to shush … … … … …

(Wikimedia Commons)

And everyone laughs. What are they laughing at? You could hardly catch a word. So now you’re set back again. You’re at a disadvantage. You start to drift off a little, because if you can’t really tell what people are saying then you can’t join in the conversation, and it’s such a strain. What you’d really like to do is rock or tap or go to a quiet place. You can go to the toilet for a break, but where’s the toilet again? What’s it like? Do you go left or right? You manage to get the courage to go alone to the toilet, and you have a bit of quiet, but you’re already sensitised. The toilet flush is like fingers on a blackboard. When the hand dryer goes off it’s as if your head were filled with buzzing bees.

You come back to the table and everyone’s still talking. It’s easier for a bit to grasp the conversation, but pretty soon you’re out of it again, you’re tired of trying so hard to keep hold of the threads. If you start rocking on your seat or doing anything overtly like a stim people will think you’re weird, so you play with your phone. Press the buttons. Flick between apps. Dive for a moment into social media, where, thank god, the noise and smells and overlap is gone. The small talk is gone. The uncertainty of trying to catch what’s being said is gone. Being in there for a short time calms you and makes you feel capable again, but you know that looking at your phone is a social faux pas, so you can’t do that for very long.

But it’s okay. You manage the meal. The food’s good. Yes, it’s another strain. Different cutlery, new foods, trying to fit in with everyone else’s pace and their ability to eat and talk. You’re constantly ricocheting between different social uncertainties, but finally you’ve done it. It was actually nice. It was hard, but it was nice.

What you really need now is quiet time. You need to be alone, to put your head under a quilt, to take refuge again in your phone or in a book or just in dark and silence. But somehow other people have a superpower, and once they’ve had the meal they’re perfectly able to have a few more drinks, to sit casually at the table chatting in words you still can’t hear properly. They can move on to another place for more drinks, while you’re thinking, but I’m not thirsty, really I’m not, so why am I drinking pint after pint? You’re thinking, but I’m so tired. I just want to stop.

(Hip, Hip, Hurrah! (1888) by Peder Severin Krøyer)

You get back to the house, but it carries on. The talking. The socialising. The sitting around not quite catching what people are saying and constantly trying to keep up with the social situation. You give in and retire to bed. So you finally get your peace, your quiet. You sleep. Your dreams are full of the anxieties that plagued you while you were awake, so you don’t sleep well. When you wake up, what you really need is an hour or more of absolute solitude to reset. But it doesn’t happen, because you have to be social again. You want to be social again. You don’t want to be the oddity, the wimp who’s always dropping out, the one who misses out on everything.

But you only have so much to give. Perhaps you can paper over it for a few days. You can manage. You come across as reasonably normal. So what’s your problem? You’re fine. You’re not really autistic, are you? It’s just a label that you cling to. It’s just an excuse. Everyone else feels like that sometimes, don’t they, and they manage?

Once you’re alone, once it’s all stopped, perhaps you go into shutdown or meltdown. You can’t talk easily. It’s hard to communicate. You’re depressed. You can’t manage to do a thing. But this is invisible still. No one sees this. There’s nothing wrong with you, not really, because you don’t flap and you don’t know every bus route off by heart, and after all, you don’t look like the autistic boy someone knew in school.

The Avalanche

It's about seven o'clock in the evening, and we're just finishing a meal in a local restaurant - not a posh restaurant, just a generic chain food place attached to a generic chain motel. To be honest, that works in our favour. Nothing is very clean, nothing is very fancy, no one is very quiet. We jumble together at some tables in a far corner, all ten of us; our little family of five, my dad, my cousin and his family. And George has been very good all day, despite the sudden influx of new people in the house and then the strangeness of going out for a meal.

(Source: Wikimedia Commons.)

But there's a limit. There's always a limit. It starts with the boys getting little plastic projector toys from a vending machine. George decides he doesn't like his and wants a different one. He's lying on the floor in front of the machine, pushing his fingers into the holes, occasionally trying to rock it. This is probably where we should have left, but of course you don't want to leave before the meltdown. I haven't seen my cousin and family in four years. We only have this one day.

Meltdowns can be like an avalanche. You see a little snow tumbling, but you don't want to leave the slopes. You want to stay just a bit longer. You convince yourself it's safe. And then suddenly you have twenty tons of snow hurtling down the mountain. It hits. It envelopes you. There's nothing you can do but try to manage the situation.

By this point George was trying to cling onto the vending machine and screaming that he didn't want to leave. I tried to hoist him up. He's eight. He's heavy. He's preternaturally strong. I try to lift him and he either goes limp or starts kicking. People are starting to look at the screaming child. I want to stay I want to stay I want to stay I want to stay. I stay very calm. I tell him very firmly that he's not having another toy. I tell him we are leaving. I tell him he can walk or be carried. In the end he's half carried, half dragged. He tries to bite me. He tries to kick me. He tries to scratch me. I keep saying firmly, no. I have to get him through fifty metres of restaurant lined with tables, and the more people look, the more people speak, the worse it is.

I have to stop every ten metres to rest, because he is heavy, and he's fighting all the way. What are people thinking? Are they seeing a spoilt brat? Are they seeing bad parenting? I wish I had some kind of badge on my back, a universal autism sign. All I can do is be very calm and firm and try to get him out of there. I hope that in doing that not only will it help George but it will also indicate to onlookers that we're not dealing with a temperamental little brat. But I know that his screams are resonating through the entire restaurant. I know that while everyone else is just trying to eat or work, I am bringing a tornado through the place.

Finally I get him outside. I need to get him to the car, but he only has one shoe by this point, no coat, and it's raining. I'm exhausted and overwhelmed and my back hurts from dragging him through the restaurant. My husband brings the car, but of course it takes time. I briefly think how useful it would be to have a blue badge in moments like this. All the while I have a screaming, panicking, furious eight year old in my arms, and all I want to do is protect him from the world, from himself, from the stares of other people. It takes multiple goes to get him into the car, then to get his seatbelt on. I have to sit next to him to stop him taking it off. I have to stop him kicking the back of the driver's seat.

And then the sun. It's not like a sudden sunny day, but more like when the clouds start to clear after a huge downpour. It takes fifteen minutes of driving, but he starts to calm down, to stop screaming and crying. I mention how I feel like I've left something behind because I let my husband get my coat and bag. He says he left something behind that starts with 'h' and ends with 'ss.' 'Happiness.' To be honest, I'm proud of him for calming down enough to start to articulate how he feels. And I'm not stupid enough to think it's the plastic toy that did it. The avalanche had been building from the moment strangers stepped into the house, gathering momentum as we went out to a noisy, overstimulating restaurant. The murmurs had been there even before that, through his stress with school and every other tiny daily prick that builds to create a huge sore. He had been holding it together so well all day, and finally something gave. So if anyone in that restaurant saw a spoilt child screaming because he couldn't have another toy, I hope they can understand where the avalanche came from. The toy was the final snowflake that caused the slide.

An Autistic View of Death

We’ve lost two starmen in the last twelve months. One of them I cared deeply about. One of them triggered the response that a famous name and good music does, but I can’t say I held a special place for him in my heart. So David Bowie has returned to whatever fabulous alien celestial home he came from. Leonard Nimoy has beamed up. Spock is now enjoying a drink somewhere beyond the stars with Scotty and McCoy. (And then, in the few days that I wrote this, Alan Rickman is also gone. Pictures proliferate with images of Severus Snape and the word always.)

Maybe it’s the autism in me, but whenever this kind of thing happens I just want to scream, no! They’re dead! They’re not resting in a better place. They haven’t gone on to some imaginary world based on whichever media persona we knew them by. When your dog dies it doesn’t tiptoe over a rainbow bridge, either. It’s dead. That’s the condition of being dead; there is no doing, there is no animated beyond. Cells cease to function, brainwaves stop, everything that makes a being a being is gone. It leaves behind a gaping hole in those who loved them, but that doesn’t make it less true, and stating that fact doesn’t make you love someone less, or miss them less. It’s hard not to say these things without sounding like an asshole, but you get used to that. People layer emotions onto completely unemotional statements, and that makes you an asshole.

That’s not to say I have no belief in any kind of soul, that I have no belief in the energy that makes up a being moving on to another place. I can’t prove heaven, but I can’t prove there is no heaven, either. What makes me uneasy is the way that we layer a pretence over these things that the deceased doesn’t deserve. We imagine David Bowie in a silver glitter suit with incredible make-up and platform shoes doing things beyond our ken on an alien world. We imagine Leonard Nimoy with his Star Trek uniform and his pointed ears, out there on the Starship Enterprise, able now to go about his business without all of those pesky human connections that grounded him when he was bound by Nimoy’s life. We have taken away what made up that unique person and instead we see only the fantasy of a character that they were not.

Part of what makes me uneasy about this is, I think, the autistic response to metaphors, to anything that isn’t straight speaking. I understand metaphors. I use them regularly. I don’t always say precisely what I mean. But it bugs the hell out of me if, for example, I ask someone if they want something and they reply, ‘I wouldn’t say no.’ ‘Would you say yes?’ I want to ask. Not saying no leaves a realm of possibilities that might not include yes. It bugs me even more when people pretend that death is a sleep or a trip into a better world full of glitter and unicorns.

But what really makes me uneasy is this shared fantasy. I know these kind of things are not new. For millennia people have taken solace in the idea of heaven. Saying grandma’s in heaven now is no different to imagining Bowie on an alien planet having a rock party. But Bowie becoming the starman, Nimoy transcending his earthly form to beam up to the Enterprise, are more than saying grandma’s in heaven, even if the ideas come from the same motivations, to visualise our loved ones and heroes in a better place. Grandma isn’t defined by heaven. The idea of heaven doesn’t erase every other amazing thing that grandma did. The Starman and Spock – and now Severus Snape – do that. They erase the deep, many-layered, incredible richness of a human life.

For every newspaper report and internet meme to associate Nimoy with Spock, Bowie with the Starman, Rickman with Snape, suddenly deletes every incredible detail of their lives. No childhood of scraped knees and selling papers, no early years searching for a niche, no children, grandchildren, loved ones. No quiet evenings reading books, or meals out, or gestures of kindness or moments of temper. Second upon second of a person’s life, piled up like leaves of a book, piled up into stacks so high you couldn’t comprehend them, become flattened. In our desperation to keep our heroes around, to send them to a better place, we’ve compressed them to a cartoon cut out, and I think that kills them more than anything.

Autism, School, Empathy, and Brotherly Love

A 'floppy' time during a stressful appointment.

It was a long day for George, who’s now eight. It was his first day back in school after Christmas, and he’s adapting so badly to juniors that he only engages about 50% of the time in his lessons. Most mornings we have to physically dress him – I mean literally, put every item of clothing on him from underwear to shoes. Often he has to be carried downstairs and to the car to leave for school. Sometimes instead of being limp he’s active, and tries to hide in various places around the house to stop us making him go to school. On those kind of mornings we can be kicked, bitten, scratched, and have to man-handle him, fighting, the whole way.

This morning, though, was a floppy morning. He wouldn’t even engage with his pet rabbit. I dressed him like a doll, brushed his hair, and carried him downstairs. He didn’t have breakfast. He did walk to the car, but had to be man-handled into school.

That KFC meal, with all the spicy coating stripped off the chicken

.

We had a call later to say that he’d lain down on the floor in the reception area, and gone to sleep. He lay there un-reactive to anything – bells, feet tramping around him – until later he pulled himself onto the soft chairs and fell asleep there. In the afternoon he did engage more, but this isn’t the way school should be for anyone. The place is rife with stress for him. No one knows what to do to make it better, but it might come to sending him to a special school. (The problem with that, as always, is money and places.)

So as a treat after their first day back we took the kids to McDonald’s. It was George’s secret, and he was bursting with it. Of course it was too simple to go well straight off. When we got there Ben, now five, started sobbing because he wanted to go to KFC, just across the road. We explained that this was perfectly possible – he and Oscar and I could go to KFC while George and his dad went to McDonald’s. It was all fine. But Ben was still sobbing, because although he wanted to go to KFC he wanted the toy from the McDonald’s Happy Meal. He was distraught, melting down, as he does so often after school.

And then George said in a moment of beatific generosity, ‘Don’t worry. You can go to KFC and you can have the toy from my Happy Meal.’

Two in KFC, one in McDonald's across the way.

George loves his Happy Meal toys. They all do. For him to offer his sobbing five year old brother his toy is a huge act. He understood exactly why Ben was upset and wanted to fix it, and the only way to fix it was by giving up his own toy.

All of the difficulties of the day, all of the stress of thinking about him going to a 'special' school, of him having such a hard time, of trying to work out how the hell to deal with this thing, were momentarily erased in those few words.

Now tell me that people with autism don’t have empathy.

Why Do We Hate Social Media?

Picture sourced from Facebook

This. This is the kind of thing that makes me mad. No, not the idea of people walking around using their phones and missing an alien first contact, but the negative reaction to people using their phones, and social media in particular. People share this kind of thing so often (on social media, of course; social media is about sharing, isn't it?) They like to present themselves as compassionate souls deeply concerned about the human race, and spend a lot of time denigrating the social media that they post on. The above cartoon is an example.

Of course the people in the cartoon are ignoring the alien. It's a piece of satire. They have to. Of course they're all blue while the alien is bathed in light. Of course they're all identical, of course they're all staring at identical screens with miserable looks on their faces. But is this the reality of social media?

This historical image reminds us that it's not modern technology that somehow makes us inward looking and antisocial. It's not the only image of its type either. A quick Google search brings up multiple similar images of men, and sometimes women, with broadsheets unfolded in front of their faces, totally ignoring their fellow human beings. And yes, they would also be reading it at the breakfast table, on the park bench, in the living room. If an alien landed how would these men see it through the paper? We still don't know if this is a representative image any more than the alien cartoon. It's there for a point. But ignoring your fellow human beings and staring at a piece of data isn't entirely new.

Why do we denigrate the use of phones and tablets as a new and selfish phenomenon? It's part of the age-old habit of denigrating the current generation which has gone on for centuries. Socrates is reputed to have said in the fifth century BC 'The children now love luxury; they have bad manners, contempt for authority; they show disrespect for elders and love chatter in place of exercise. Children are now tyrants, not the servants of their households. They no longer rise when elders enter the room. They contradict their parents, chatter before company, gobble up dainties at the table, cross their legs, and tyrannize their teachers.' (Source) So what's changed in two and a half thousand years?

But it's worse than that. It's not just about doing-down the current generation. It's about the attitude that if a person's not looking at you then they must be antisocial and phone-obsessed. But for so many people a device like this is an escape. It's an amazing thing. It's a means of communication that lets you talk to friends and family pretty much wherever and whenever you are. If you, like me, hate to talk on the phone, you can text or message. You can keep up with what's going on in the lives of friends who live so far away that dropping in isn't an option, whether that be a hundred miles or five thousand. You can connect with someone who sleeps when you're awake and is awake when you're asleep. You can write a heart-felt letter and have it arrive instantly instead of spending weeks in the postal service. Smartphones make people social. Frequently my looking at something on my phone leads to my sharing it with friends or family either through my phone or by looking up and sharing it physically, passing the phone over and talking about it. Conversations begin, either online or face to face. Smiles are exchanged, physically or by typing in characters.

I think that a lot of the hostility from people towards social media essentially stems from a selfish motivation. If I'm looking at my phone I'm not looking at you. If I'm reading I'm not talking to you. I'm not looking up. I'm not making eye contact and smiling and engaging you in interaction. No matter that I might be engaging with and interacting with five different people in five different ways while I'm looking at my phone. I'm not looking up and talking with you, and whether or not you're the type of person I want to interact with doesn't matter. You're left out in the cold. You would be whether I were reading D. H. Lawrence, browsing the Guardian, looking at funny memes, or chatting with friends through cyberspace.

Through Facebook I have made friendships that I couldn't make in person and finally been able to meet those people in person because of that. I'm in contact day to day with relatives and friends who would otherwise be a fond memory. On top of that I have access to world news and art and other wonders. You can use a brick to throw through a window or to build a house. You can use a smartphone to play on Candy Crush or to read Homer. Or you can do both. You can meet friends face to face to get blind drunk and vomit on your shoes, or to visit an art gallery, or to argue, or enjoy a country walk together. You can use a smartphone to give virtual hugs and love to people you couldn't reach any other way, to chat, to share, or to fight or denigrate one another. These things are what we make of them. Ultimately they are subjects of human agency, and if they allow someone with social anxiety or autism or severe disabilities, someone far from their loved ones, someone living like a fish out of water, the chance to be part of a greater network and support one another, or just to get some respite from a world which often seems at odds with their way of living, then that's a wonderful thing.

So You Need to Talk to an Autistic Kid?

Of course there are loads of professional situations when people need to interact with autistic children. Teacher, shop assistant, medical professional, police officer - the list is endless, because autistic people are just people, and they live in the world like everyone else. The most common situation where we encounter trouble with George is at children's parties, where everyone is expected to participate, to have fun, to join in, and also to communicate their wishes. It's in exactly this kind of pressurising environment that George closes in on himself, and can't talk. So today, as I sat in the clamour of a children's party, I wrote a little list that might help professionals when they need to talk to autistic kids, or any kid or adult who has trouble with the pressure of communication. I use 'he' throughout because I was thinking of George, but of course it applies equally to all genders.

• Even if he doesn't respond, it's very likely he's listening to every word you say (unless he's distracted.) He's hyper-alert in this kind of situation, and he's trying very hard.

• Try to have the conversation in a quiet space, away from distractions. If there's a lot of noise or other sensory stimulation he'll find it hard to hear what you're saying. That said, don't try to force him to move if he doesn't want to.

• If he doesn't seem to want to interact with you, ask if it's okay to talk through his parent/caregiver. He wants to get through the conversation. He just can't.

• Pressure makes things worse. He needs time to make decisions.

• Talking more loudly won't make him respond. Please try to make your voice softer and quieter. Remember he's autistic, not stupid.

• He might want to hide his face, look down, huddle up, or hide in a small space. This makes him feel safe. It's not a problem, and he can still hear you.

• He might not want to make eye contact. Please don't force him to.

• He's not being rude. He knows how to say please and thank you. He knows it's expected, and he's very aware of his own sense of gratitude. But he can't speak.

• If needs be just leave it. Consider if the interaction is really important. Can you speak to his parent or caregiver instead, perhaps at another time? But try not to leave him out just because he can't interact. He wants desperately to be part of things. It's just overwhelming.

I hope that some of these tips help. They won't fit every kid, I'm sure. I wrote them specifically with George in mind. But I hope they help.

The First US Measles Death in 12 Years

So here it is. Here's the result of the hysteria and fear. The US has seen its first measles death in twelve years.

And now will people vaccinate their kids? This woman had a weakened immune system. Did she die because she caught measles from a kid whose parents were worried about less mercury than is in a tuna sandwich, or the non-existent spectre of autism from vaccines, or 'big pharma,' or any of the other spurious reasons anti-vaxxers come up with? Maybe she wasn't vaccinated because of similar fears? Who knows. She's dead, anyway. No more breathing, no more smiling, no more thinking, no more touching the lives of people who loved her, because of an illness preventable by a single injection.

There are people all over the world who can't be vaccinated for various reasons. Those reasons shouldn't include 'I just don't trust vaccines,' or 'I don't want my kid to get autism.' There are people fighting hideous illness that preclude the possibility of vaccination, people with immune disorders that mean they both cannot be vaccinated and are at greater risk of death if they do catch an illness like measles.

'Vaccination has saved more lives and prevented more serious diseases than any advance in recent medical history.' When you let your unvaccinated child go into town, visit Disneyland, go to school, you're leaving every vulnerable person you encounter open to the possibility of death.

This Is (One Side Of) Autism

I don't know how to encapsulate the challenges of autism for someone who doesn't understand. There are wonderful things. George is a beautiful, bright, highly intelligent child. But life overwhelms him.

Please be Patient.

We've just been through the worst meltdown I think George has ever had. He veered between screaming and sobbing. I had to take him out of his grandparents' house. He's bitten me, kicked me, hit me. His strength is phenomenal. At times he literally sounded like an animal, howling, screaming, and moaning. It's not that he won't speak, it's that he can't.

He was terrified, absolutely terrified. It lasted for an hour or more. There was nothing I could do for him. Hugging didn't comfort him, but I had to hold him. Before this he was hiding in corners, behind doors, curled up like an animal. When he felt rage there was a danger he was going to break something. The frustration of not being able to speak was awful for him, and for us. I took him outside onto a hill of wild flowers, and held him to keep him safe, and try to minimise his hurting me.

And then he reached a point where I could let him go, when I judged he wasn't going to hurt anything, when he asked me to let him go instead of screaming at me. He was still slipping in and out of being non-verbal. In the end he went upstairs and slowly he came out of it. And then it's like the sun coming out after a thunderstorm. He's talking, smiling, laughing. He's a different child.

He has been filled up with tests at school, and with social activity. Something had to blow, and once school was over, it blew. It's not about being a spoilt child. It's not about being a bad parent. It's autism.

This is not the end. This is not the whole deal. There are two sides to the coin. George is witty and vastly intelligent. He is loving and compassionate and funny and generous. His empathy is beyond bounds. His hugs are to be treasured. But when we are late for school, when the children aren’t quite presented as they should be, when we have to leave a situation before things fall apart, when he’s so filled with emotion that he scares himself and his fear and frustration come out in cries and yells – this is autism too. It doesn’t need bald stares or snap judgements. It just needs your understanding for a little while.

An Autism Morning

It has been a couple of months since George (seven) received his very welcome diagnosis of high functioning autism. It was a long process, but CAMHS (Child and Adolescent Mental Health Services) were wonderful and diligent, and we went away with what we needed. Now we're in a waiting game for more help.

(Credit. Creative Commons)

Some mornings with George can be very hard, involving screaming and shouting, hitting and biting. Everyone will be late for school. Everyone will emerge frazzled, stressed, wondering where we went wrong. But often even the milder mornings are difficult.

This morning George's shoes had to be just right. We had to stop on the pavement to get the tongues sideways because I straightened them when I made his shoes tighter, because they were too loose for him. His shoes were too loose because I'd had to dress him this morning, like we do most mornings, but this morning he was introverted and unresponsive, so I had to put the shoes on while his feet were upside down. The inside of his shoe had felt sticky, and needed more adjustment. Now the tongues of his shoes were wrong and had to be just at the right angle, with the tab sticking out, the straps done up just the right amount. I had to crouch with him in the street while he shouted at me, wondering what the neighbours must be thinking. I stood hovering some yards away from him while he screamed 'Wait!' because I was trying to simultaneously watch Ben (four) who had run to the end of the street, and be there for George, who was two beats away from a collapse.

I could have told him not to be so silly, I could have left his shoes and become impatient, told him we would be late for school, told him we didn't have time to fuss about things like that. If I had done that I would have left him screaming or crying or violent, so I went along with what he needed. Not wanted, needed. It's not about whims and fancies with him. It's about having to have things exactly right, or everything will be wrong.

We fixed his shoes, and walked on. None of us were allowed to walk in front of him on the way to school. How do you explain to a four year old that he can't run ahead of his big brother because we don't want him to have a meltdown? All I can say is, 'We don't want George to go into rage mode,' and feel bad about characterising something so out of George's control in that way, but knowing it's the only way that Ben might understand. In rage mode George might kick out or hit. He might scream and shout. He might collapse onto the ground like a dead weight. No, we didn't want that to happen.

This morning on the walk to school George just wanted to be left alone. He didn't want interaction. He didn't want people to look at him. He just wanted me to be with him, no one else. When he's like this he can be furious one moment, and then crooning with delight and gently stroking a dog on the path the next.

We stopped to get his coat done up just right, and of course Ben ran off again to the end of the next road, the busier road where the cars come down fast and where this week the lollipop man is off sick. It's hard to pay attention to Ben while also looking after George, so Oscar, who is now nine, had to watch Ben and keep him from the road.

This morning was a triumph. There are days when he is better and days when he is worse. Today could have been a bad day, it could have been lying on the ground screaming, kicking, biting. It could have been me trying to carry George and two school bags across the field. But today we got George into school willingly and relatively happily, because I stayed calm and patient, and because although George was feeling bad, he wasn't too bad. This is a sliver of what it can be like with George on a so-so morning. I know a lot of people have it much worse, but it would be nice if the people who don't have any experience of autism understood how even the easy days can be hard.