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.

Saturday, 16 January 2016

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.

Tuesday, 5 January 2016

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.

Tuesday, 27 October 2015

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.