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.