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.