Friday, 17 November 2017

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.

Thursday, 26 October 2017

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.

Wednesday, 27 September 2017

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.

Monday, 10 July 2017

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.

Tuesday, 17 May 2016

Using Spoons

I've read all about spoon theory. Who hasn't? Well, perhaps people who don't spend far too much time on Tumblr and Facebook haven't. The idea can be read here, but to put it briefly, while people with no issues start the day with unlimited spoons, those of us with a chronic condition or other issues start the day with a limited supply. If you choose to use your spoons on putting on your makeup and walking to the bus you will have fewer spoons to use later on other things. But I'd always seen these restricted amount of spoons as something for those with depression, those with narcolepsy, those with chronic fatigue, and so on.

I've only just realised that, as an autistic person, I'm running on a limited amount of spoons too. (I'm not always very self aware.) Perhaps on a perfect day, when I can stay at home, when there are no other people around, when I have nothing pressing to deal with, my spoons are limitless too. But as soon as you pull in interaction with the great world, suddenly the spoons disappear. I was quite willing to understand that when I feel depressed I might be working on limited spoons, but issues relating to autism - well, I'm just being silly. Everyone else manages. Why can't I? Why did I need two years out of education after finishing my mandatory schooling? Why can't I manage to socialise two days in a row without huge fallout?

The joy of spending too much time on Facebook and Tumblr is you realise you're not alone, that you're not just being silly, weak, making a fuss. There are other people out there, people who have the same struggle, people who advocate for you. People who have your back.

So there I was last night sitting in a theatre watching a brilliant show. And using up spoons. I'd already used up quite a lot of spoons on anxiety through the days leading up to going out. And then when we were there, there was a lobby full of people to navigate. There goes a spoon. I had a moment with the security guard at the door who made me pour away my water, the water I always have with me, so I ended up with a bought bottle, an unfamiliar bottle with unfamiliar tasting water. That was another two spoons. I wasn't very familiar with my surroundings, although I tried to compensate by at least looking at a seating plan in advance. Another spoon. The music was loud, so loud I can't believe 'normal' people can stand it. That was a spoon gone. And there were a lot of women in the audience, a lot of women wearing perfume, deodorant, hairspray, make-up, and whatever other stinking products 'normal' people choose to put on their bodies. Another spoon gone. I was wearing 'nice' clothes, including earrings and high heels. Another spoon. The show, being Priscilla Queen of the Desert, was visually very glitzy. Mirror balls, disco lights. There's another spoon. The show was emotionally affecting. There's a big spoon right there. And I was surrounded by people for hours. People clapping, people whooping, people acting in bizarrely unpredictable ways. Dear god, people. I don't know how to handle people. That's a whole ladle.

I had an amazing, brilliant night. I'm glad I went. I would go again. But I did pretty much pick up an entire drawer full of spoons and throw them to the wind. Today I have very little left. Today I feel depressed. I feel uneasy. I feel exhausted. I don't want stimulation, I don't want chatter. I don't want to interact with people. I'm not concentrating very well. I don't have much patience. Three hours or so of fun last night is still having its repercussions almost twenty four hours later. I've never felt able to explain this to people before. How do you tell someone that yes you want to socialise with them but that you'll be dealing with the fallout for so long afterwards that you'll be pretty much useless for normal life? How do you explain that having a wonderful evening will make you feel the next day like life isn't worth living, and you'll have to spend all your time catching those nasty little intrusive thoughts before they catch hold?

But there it is. That is autism, and yes, people with autism can have a limited number of spoons, just like people with more visible issues. I wouldn't swap it for the world. I doubt most of the audience experienced the performance to anything like the depth I did. But for this, I pay. I have limited spoons, and I hope this helps you understand.

Wednesday, 10 February 2016

Body Positive

Something of an a epiphany came to me the other day when I watched this facebook video of a larger lass giving it her all. I'm not going to say that it will last. I'm not going to say this has restored positive body image to me for life. But it's a good thing. For a couple of days I haven't felt ugly in being fat. I've almost felt comfortable about it. I've felt happy. I still want to lose weight. I still want to be fitter. But I don't feel ugly.

Today I went swimming at the swimming pool for the first time in years. I went swimming in my two-piece and felt that I would have been happy if it were a bikini rather than a tank top that went down to my hips. Yes, I am fat, I thought. Yes, I want to lose weight. But fat can be sexy. It doesn't have to be a turn off. And this body has carried three babies to term and given birth to them. Sometimes it has a bad back and can't do much, but at other times it's incredibly strong. Yes, stretch marks are tiger stripes, and I deserve them after the pain of late pregnancy and giving birth. If someone doesn't like them, so what? Why should I spend my time covering over my flesh as if I were ashamed?

I have managed with this body all my life. Sometimes I stress eat and sometimes I just eat too much. But I've carried on through fights with stress and depression and anxiety. I've carried on through some pretty horrendous times caused by people outside my control. I've carried on bringing up three beautiful boys, one of whom is definitely and two most likely on the spectrum, and although sometimes I've lost my temper I've hugged them when they were hurt and cuddled them to sleep and read to them and educated them and taken them to beautiful places.

Does it matter if I'm fat? My children don't care. My husband finds me sexy. I'm the only one left whose opinion matters, and it's far better that I'm happy with myself than that I hate myself.

Saturday, 23 January 2016

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.