Tinyletter 9: People?! What on earth do I know about people?

Hello,

It’s funny how things wash up on the shore several weeks after the event. For my part, I never know what I feel about anything in the moment; it’s only afterwards – and sometimes a long time afterwards – the my feelings surface.

That means that my reactions are often all wrong in the here-and-now. Take, for example, my experience with the psychiatrist who began my diagnostic process. At the end of our interview, he said that he thought my experiences certainly seemed to indicate a diagnosis of Asperger Syndrome, but that one thing puzzled him: he couldn’t see how I could possibly write fiction if what I’d said was true. ‘You’re unlikely to have the social imagination to write convincing characters,’ he said.

I should have told him that I knew he was wrong. But I didn’t. Instead, I pretended that it had made me think, and said, ‘Oh, that’s interesting,’ and scuttled off home as quickly as I could to put the whole experience on ice. It was only a couple of weeks later that it began to worm into my mind. The implication, I felt, was that I was either autistic or a writer; I couldn’t be both.

What was particularly disturbing about this information was that I was in the middle of writing a novel – a commercial fiction novel, based on a cast of female characters – for a major publisher. There I was, sitting down every day to add another 2,000 words to my manuscript, and apparently I was kidding myself. It was terrifying. Soon, apparently, the emperor’s clothes would fall off entirely, and I would be revealed for what I am: an empty shell, for whom the external world of emotions and motivations is a complete mystery.

One of the good things about me is that I’m incapable of missing a deadline. So I submitted the book, and braced myself for the feedback. It was unlikely to be any good. I would have to face the music sooner or later.

In the event, the feedback was great. There were, of course, a few adjustments to make, and some characters to flesh out a little more. My editor said that it made her cry, and not – I checked – in frustration. Still scared, I emailed her specifically to ask whether the characters seemed real enough, telling her what the psychiatrist had said. ‘I cannot put into words how wrong that guy was,’ she said.

Do you want to know why I can write convincing characters? A lifetime of commitment to studying them. I know I read people badly; I know I’m often confused by other people’s reactions and choices. That’s the whole reason I write: I watch, I make notes, and I funnel all that observation into characters that help me to make sense of the world around me. Can I pull off neurotypical characters? Hell yes. Those people have been my ‘special interest’ for as long as I can remember.

But look a little closer, and you’ll notice that all my characters are slightly at odds with the world. Maybe – and I don’t know the answer myself – some of them are a little bit like me. And I think that means that they’ll be a bit like most of my audience, too. I can no longer believe that I’m writing for an imaginary group of ‘normal’ people.

If you’d like to take a look for yourself, Part 1 is out on Kindle at the end of August, and you can pre-order it on Amazon.

Me? Plugging my book? It’s almost like I’m human after all…

See you soon
Katherine

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Tinyletter 8: Say my name: autistic

Hello,

I’m going to tell you a terrible thing: when I tweet about my life on the spectrum, I get more interest if I use the term ‘Asperger Syndrome’ than if I use ‘autism’.

I’m going to tell you an even more terrible thing: I completely understand that.

I’ve been there too. When I first got an inkling that I might not be neurotypical, my instinct was that I wanted to have Asperger Syndrome, please. It had a certain cachet about it, a faint whiff of genius, and I wanted some of that. Autism? That was definitely other people. I was separate from them. I didn’t want to wear that label.

And then, when I discovered that Asperger Syndrome had disappeared from the latest Diagnostic and Statistical Manual, I was furious. How dare they take it away from me as soon as I’d found it? How dare they throw me in one, big bucket with all the other people on this supposed spectrum?

In my defence, I have never knowingly identified with any social group, and this one was more of a struggle than most. There was a shift, for me, from feeling pleased that I had finally found an excuse for the worst aspects of my behaviour, to slowly realising the full extent of what it meant. Learning about autism was a process of remembering: all of the social graces I’d learned by rote, all of the transition points when I’d realised that my behaviour didn’t match other people’s. It forced me to recall all the times that perfectly normal aspects of life – holding down a day job, moving house – had sent me into spirals of meltdown that I couldn’t overcome.

I remain resistant to the idea that I’m disabled, but then I’ve also come to realise how much help I get in everyday life from my husband, who endlessly smoothes things over for me. With that, I wouldn’t look nearly so capable, and I certainly wouldn’t attract all those approving comments that you’d never guess. I’m in a privileged position, in a wealthy country. It’s graceless to believe otherwise.

I suppose, in truth, I’ve come to realise how much I have in common with those ‘other’ people, who are more like me than anyone I’ve ever met before. And they have welcomed me, and recognised me, in ways I’ve never dared to hope for.

So, dropping ‘Asperger Syndrome’ reflects more than a change in diagnostic procedure. Saying the word ‘autism’ is a political act. It asserts membership a community of people who all share a worldview that’s invisible in mainstream culture. It’s a refusal to recognise those commonalities and then then go running towards the neurotypical people with open arms, saying, ‘No, wait! I’m just like you really! I’ll change!’

Because God knows I’ve done enough of that in my life.

See you all next week (and don’t forget to vote),
Katherine

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Tinyletter 7: Recognise yourself? Good. We’re recruiting.

Hello

Whenever I write about my experience of being on the autism spectrum, I always get a cluster of emails saying, ‘That sounds just like me.’

Sometimes it’s, ‘Hang on, that sounds just like me. I’m normal, so that means you’re fooling yourself. There’s nothing remotely unusual about you.’

It’s hard to know where to start with that one. In the first place, it reveals a belief that being autistic represents some kind of power-play for sympathy and attention, which is restricting everyone else’s oxygen. This is nonsensical in and of itself, but it also ignores the depth of the experiences I’m describing. Nobody comes to believe they’re neurodiverse after having a single, difficult day at a music festival or a fall-out with a friend. This is about a consistent and damaging pattern of dislocation and overwhelm across my entire life. If you’re experiencing the same, then for heaven’s sake get some support, rather than telling off strangers.

More often, though, people say, ‘My god, I recognise that. Does that mean I’m autistic too?’

Well, hmm. Okay. The answer is, I don’t know. I mean, seriously, don’t ask me – it took me 38 years to even have an inkling.

The word ‘spectrum’ is important here. The cluster of impairments that make up autism are all found in neurotypical people too: the general population experiences difficulties in relating to other people, deep (wonderful) obsessions, sensory overwhelm; ‘normal’ people engage in stimming behaviour sometimes; they have meltdowns and retreat into silence. Common-or-garden introversion can look a lot like autism.

What I mean to say is: don’t fret. It might just be that you’ve realised that autism is profoundly human experience. Don’t feel bad about that: all we late-diagnosed people have been through the same.

But perhaps you are recognising an awful lot of these traits, and, like me, are stringing together all the times that life has felt like a near-miss with the world that everyone else inhabits. Well, then you might be learning a new and axis-shifting truth about yourself. How did you miss this for so long?

The plain fact is that we’re hearing the voices of autistic people for the first time ever. We’re finally learning to recognise how autism is experienced from the inside, rather than how it’s observed from the outside. The shift is enormous, and it’s inviting new people – especially women – to say, ‘Yes, I recognise that. This is me, too.’

So, if you read my letters and recognise yourself, maybe you’re just realising that autistic people are not so ‘other’ after all. But maybe you’re about to join us. Great. We’re recruiting.

See you next week,
Katherine

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Tinyletter 6: Go deep or go home

Hello,

I’ve never been asked that classic interview question, ‘What is your greatest flaw?’

It’s a shame, because I’ve had an answer ready for years: I’m wired for depth. If I’m interested in something, I have to learn everything about it. I will hunt it down remorselessly, and interrogate it until it’s spent. I want to understand every last, complex bit of it.

On the face of it, this is a humblebrag on the scale of the classic answer,‘I’m a perfectionist.’ And to be completely frank, this is my favourite part of myself: the way that I know things, and the way that my brain can suck in information, turn it through 360 degrees, and make connections between new data and all the other things I know. I’m addicted to flow, the sensation you get when your mind focuses exclusively and comfortably on one process, and you feel rewarded by the activity itself, rather than the end product. I encounter it when I’m reading, writing, and assembling new information in my head. I can’t get enough of it. I like to build imaginary labyrinths, and roam around the space inside them.

If there’s a problem at all, it’s that I need it too much. I can’t seem to defer the urge to concentrate as others can. If I’m denied the chance to sink into thoughtfulness for any period of time, then my brain just goes onto standby of its own accord, or worse, I get crabby and desperate. What’s more, I struggle to show any interest  at all in things that don’t fall into my natural focus. I have specific thoughts that I need to have: about whatever book I’m currently writing, or whatever system of knowledge I’m churning over. The other stuff can do one.

There’s a theory that autistic brains are primed for detail: all that over-sensitivity to sound, smell and texture is the flip side of the things we need to know so deeply. I’m told that it’s considered offensive to call these things obsessions, and that ‘special interests’ is the preferred term. But I hate ‘special interests’; it sounds patronising, as though the depth of knowledge is somehow diminished by the fact that an autistic brain is holding it. No, I much prefer the wild, romantic term ‘obsession’, with all the blazing, irrational passion it implies.

The question is, how do you build the kind of life that allows you to glory in those obsessions, rather than endlessly – painfully – deferring them.

See you next week,

Katherine

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Tinyletter 5: Meltdowns: the white heat and the slow burn

Hello,

It’s funny how people from the autistism community use the term ‘meltdown’ quite willingly. You’d think it would feel insulting, a relic of a time when our behaviour was only ever viewed from the outside, and so always seemed extreme and unfathomable. But no: ‘meltdown’ seems to fit. Personally, I’ve been grateful to adopt it. It gives me a shorthand for a state of being that I’ve fallen into throughout my life.

Everyone has moments of ‘Nope. That’s enough.’ Are mine any different? I don’t know. Mine make me forget how to talk, or walk. The sudden ones feel like an explosion in the brain, a momentary deafening and white-out of my vision. I am blanked out, and not in control of my behaviour during this interruption. I’m an animal, lashing out. The experience is grim, but the aftermath is embarrassing past all endurance, knowing I’ve lost control and not truly, hand-on-heart being able to remember what I did or said.

Sometimes, I look back on my meltdowns and find them funny, if only in extreme retrospect. I am capable of extraordinary feats of articulation in my bestial haze. After an unproductive night on the labour ward, for example, surrounded by noise and more human beings than I prefer to encounter, I drew the curtains around my bed in an effort to shut out the rest of the world. Minutes later, an orderly marched in and abruptly threw them open again, yelling – or so it seemed to me – that she can’t have people closing the curtains because of health and safety.

I don’t remember what happened next. I think I probably sat, fuming, for a while. H says he dozed off in his chair, and then woke suddenly to the sound of shouting and knew, immediately, that it must be me. I had apparently detached myself from various machines, marched into the midwives’ station, and entered into a tirade which is a complete blank to me, but which I hear was quite an impressive analysis of the (multiple) failings of their department. Whatever it was I said, it had a startling effect on the staff, who scattered like skittles to calm me down and arrange the discharge I was demanding. The orderly was wheeled in to offer a fulsome apology, and my curtain was returned to its rightful status: closed.

Other meltdowns are slower though, and more insidious. They’re a chain-reaction of small implosions, a build-up of pressure in the brain, as if the contents have turned into an incoherent liquid that’s sloshing dumbly around. If the sudden meltdowns are a bright flash of release, these are a smouldering taper, building the damage inch-by-inch until everything is blackened. They make me yearn for a form of trepanning that would let the air hiss out of my skull. The only way to restore myself is to disappear from sight, perhaps for a day, perhaps for a week.

I’m writing from the middle of one of them. Writing is the only part of me that stays; it always has. In all other ways, I’m failing to make any sense. I’m completely incompatible with everyday life. The pace of the outside world is impossible; I need everything to slow down. It refuses. I’m distressed by the speed that my son moves through the house, his constant, noisy, motion. I’m distressed by the million tiny demands of my work, the ways in which I have to calibrate myself to the needs of all the different people I find there. I’m distressed by the brightness of daylight, the loudness of the street outside, the chaos of objects in my house. There are so many of them: so many things, all being there. I’m not sure how I’m supposed to process all of them.

I often try to end my letters by drawing a positive from my experiences. It’s not all bad. I feel, on balance, that I offer more to the world than I take away. But this is a brick wall that I face, over and over again. It’s insurmountable at this moment, but it’s also a constant rhythm throughout my life. I cope so far, and then I stop coping. I will return to coping again, but then I will also drop back out again, at some point. Right now, I’m exhausted by that inevitability, and I don’t know how to solve it.

It’s Mental Health Awareness Week, and it’s important to say that autism is not a mental health condition in itself. However, the process of living in a world that seems endlessly inhospitable means that, for most of us, the line is very easily crossed.

Take good care of yourselves,
Katherine

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Tinyletter 4: On disobedient energy

Hello

My energy goes astray sometimes. I’m rarely in full control of it. Most of the time, it feels like trying to bring an enormous net of balloons under my authority, forever at the risk of floating away.

At best, I’m fidgety. My legs twitch if I try to sit still. I bite my nails, and when I run out of nails, I start on the skin around them. These are the most normal-looking things I do. For some reason, I’m compelled to grab my nose every five minutes or so. I can’t explain it; it just feels like it needs addressing. My ears, too, although less often. And my chin. It’s as if I need to check that my face is still there.

When I’m overstimulated, I talk too fast. I might be stressed, or I might be excited, or there just might be a lot going on in my peripheral vision. Either way, my words rush out so fast that I end up breathless, my voice blown off course into sudden squawks and glitches. I’m usually waving my hands around at the same time. It has nothing to do with wanting to say anything in particular; it’s just a rhythm that my body must find, an energy-releasing pattern. People squint at me and ask me to slow down, or exchange sly glances that they assume I won’t notice. I can’t blame them. It must be like receiving machine-gun fire.

At the worst times –  when I’m exhausted or upset, or my brain has suddenly blanked itself – I feels as though I’ve lost control of my face altogether. The muscles go slack, and I know I’m expressionless. These are the moments that the words go too. I’m nothing, for a little while. I’m on standby. This happened to me yesterday: I was tired, anxious and headachy, and I’d talked to too many people, and I realised that I ought to get myself home and recharge for a while, but I’d left it too late. By the time I set off for my car, I struggled to remember how to walk properly, and I could feel myself performing a robot march, stiff and ungainly, imprecise. All I knew, at the bottom of my brain, was that I needed to make sure nobody saw this. I needed, urgently, to disappear.

Like many women on the autistic spectrum, I have learned to perform my tics and compulsions in private. I have to escape before I shut down. I don’t always pull it off, but mostly I can get away with appearing slightly uncanny rather than downright odd. Alone, I can run my checks at an enhanced speed: nose-ears-chin-nose-ears-chin, sometimes until my face turns red. I can work my fingers into little rolling staircases, over and over, as I have done since I was a child. It’s comforting and necessary; it spends out the energy somehow.

I’m trying to give up on the idea that I have to suppress these things; I’m trying to learn to indulge them. I’m settling into the idea that my physical compulsions are completely normal for people like me, and probably good for me too. ‘Stimming’, as this is called, is just something I need to do and actually, when I do it consciously, I can find more gentle, productive ways to let my stray energy seep out. I can clasp my fingers together and roll my thumbs around and around, savouring the soft, rhythmic whisper of skin against skin until I’m sated. I’m even learning to do it in company, with people watching. They can draw their own conclusions.

I’m beginning to feel lucky to have it, this shortcut to comfort and calm. I wonder what it’s like to be without it, and to live a life whose greatest fear is being different. Sometimes, it’s a privilege to have no choice.

All good wishes,
Katherine

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Tinyletter 3: Look me in the eye: on different kinds of expertise

Hello,

When I first plucked up the courage to talk to my GP about whether I might be autistic, he listened to my account, agreed that the case history sounded right, and then asked what I wanted to do next. ‘It all depends what you want,’ he said. ‘A formal diagnosis could be stressful, and won’t be quick. You might not need it. All the tests are online now, and you can do the research yourself.’

It was, in retrospect, a sage piece of advice. Of course, I ignored it. I mean, I read every book I could find, took all the tests, and was surprised how far over the line they placed me. I was expecting to be borderline; I was not. I sought out other autistic women and found that my experiences matched theirs. It was a surprisingly delirious experience to suddenly feel very normal within this group, after a whole life as an outlier.

The problem was that, after a while, I wanted someone else – an expert – to agree with me. After waiting eighteen months for an appointment at a specialist NHS clinic for adult women, with another year’s wait in prospect, I became impatient. I used an insurance policy to arrange a private appointment with a psychiatrist.

It’s not a comfortable thing to recount a lifetime of being mystifyingly out of joint with the world. But he listened, and agreed with me that what I reported was a classic case history of Asperger Syndrome. He expressed surprise, though, that I displayed a sense of humour and clearly had a creative career. I expressed surprise that he wasn’t aware of the huge number of creative, funny autistic people out there. It should, I suppose have rung alarm bells.

Still, he referred me for standardised testing, and I agreed to go along. The appointment was a fortnight ago. When I sat down, I saw that there was a child’s tangram puzzle on the table, and I thought, They surely won’t expect me to do that. They did. I obediently fitted the triangles and rhombuses together to form a picture of a cat.

‘What do you think that is?’ said the woman.

‘A cat,’ I said, ‘obviously.’

‘Well done,’ she said, and handed me a wordless children’s book, asking me to tell the story.

‘You do know that I’m a professional writer?’ I said. ‘I lecture in Creative Writing at university and have just finished a PhD?’

‘Great,’ she said. I talked through the story, feeling ashamed of myself, somehow. Then she asked me a few things about my life, about friendships and attitudes, what I like to do in my spare time. I thought, I’ve talked about all of this before. But still, I regurgitated the whole lot again – the agonising dislocation. I felt sick by the end of it.

‘Well,’ she said, ‘as you might have guessed, it didn’t so much matter what you said, as what I observed you doing as you said it.’

What? I thought. So you made me dredge the worst depths of my feelings, just to ignore them and think you know better?

I’ll score the test,’ she said, ‘and get back to you. But the problem is, I’m not sure that this particular protocol will be sensitive enough to detect autism in you. It’s really designed for eight year old boys.’

Sure enough, the report came a week later, noting that my reported experiences fit with a diagnosis of autism, but that she couldn’t observe autistic behaviours. She noted, in particular, that I made good eye contact on several occasions.

Here’s the thing with consulting an expert: they have to possess actual expertise, rather than a qualification and a willingness to charge a fee. I want to talk more about autism in adult women in my next letter, but one of the key issues in diagnosis is that we don’t tend to ‘look’ autistic by any externally observable criteria.

This is partly because autism presents differently in women in the first place, but it’s also because we often carefully learn our social skills based on years of negative feedback from those around us. Believe me: I spent my whole childhood being told off for not looking at people when they spoke to me; being asked, ‘Are you lying? You won’t meet my eye?’; being called arrogant and disinterested in other people. Eventually, you endure the discomfort of eye contact to save yourself the trouble of being told off all the time. And you come to believe that you’re a terrible person for not getting it right.

It’s funny, but that report has taken be right back to that time of my life, when other people knew best about what I thought and how I felt, and what I told them about myself was barely relevant. The difference is, I’m not willing to slink away, feeling humiliated, anymore. I have written the kind of hearty letter of complaint that’s making me dread opening my inbox to see the response. But there comes a point when you have to stamp your foot and say it’s not good enough. I’m not a child anymore. It’s time to finally acknowledge my expertise.

See you next week,
Katherine

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Tinyletter 2: Less ‘I see dead people’ than ‘I feel dry things’

Hello

I may never be able to buy a new pillow.

My current one is, by my best estimate, at least 16 years old. I know, I know. You should buy a new one every two years, apparently. It’s almost certainly a haven for bacteria. We won’t talk about the fact that it’s covered in a kind of yellow crust that necessitates three pillowcases as a barrier measure.

It is my pillow, and it is exactly right. No other pillow will do. It’s filled with foam chips, and it’s more or less flat, and I love it. I take it on holiday with me, if I can get away with it, and haul it to friends’ houses if I stop over.

Without it, I can’t sleep. I tried to replace it recently, because even I know it’s disgusting. I went to Ikea and spent good money on the best pillows they had, pure white with striped binding around the edges. I knew I would hate them the first night, and also the second. But after a fortnight I had to give up and fetch my old, yellow one back out of the spare room, and not for the first time. I’m possibly stuck with it forever. Maybe literally.

I am, I’m afraid, immensely specific about these things. Now that the pillow is back in place, I’m currently having conniptions about the tines of our forks, all which have gone minutely out of line – except one. You will be unsurprised to learn that this is the fork that I must use to eat my dinner, or else I don’t particularly want to eat it at all. I have just thrown out a set of glasses whose rims seemed to me to be minutely pocked, although nobody else found them upsetting.

Sometimes it’s less precise than that. When I’m tired, I’m haunted by non-specific smells that make it impossible for me to settle, or high-pitched noises that no-one else can hear. I’m told that I’m the only one who repeatedly complains about the flicker of the light in our work toilet. I can’t bear the sensation of dusty things, and so I endlessly have to wash my hands to get rid of the film of dust that seems to accumulate on me as I go through my day. It’s less, I see dead people than, I feel dry things. The texture of powdery sand, or terracotta tiles on bare feet, or even the thought of someone else touching chalk, in a different building, that may be imaginary, is enough to send me hot-and-cold, shivering, teeth chattering.

Everyone has their sensitivities, but I feel, in Temple Grandin’s words, ‘like one big exposed nerve.’ It reads, on the outside, as fidgetiness, distractedness, and irritability. Inside, it’s like living in a cheese grater. I spend a lot of my time (although not nearly as much as I’d like) in the bath, where it all washes away for a while. But sometimes I just have to sleep it off, and hope I can start again when I wake up.

But I’d hate it to sound like a sickness, because there’s a wonder in it, too. The great thing about infinite specificity is that it’s possible to find exactly the right thing, every now and then: the right flavour, the right climatic conditions, the right tone of light. I’m hard to please, certainly, but when the stars align, I’m delighted. Read through a different lens, my specificities could be finely attuned taste. If nothing else, I’m a pit canary for food that’s about to go off, or suspicious odours in the house. I’m not sure what career that would point me to: sommelier? Police dog?

See you soon,
Katherine x

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TinyLetter 1: I have neither psychic abilities nor superpowers. Sorry.

Hello

I used to teach Psychology A Level. In the first session of every year, I was invariably asked the same question by my students: ‘Does that mean you can, like, read my mind?’

I’m still not sure what the average sixteen year-old understands by the term ‘psychology’, but that’s not the point. I’ve been reminded of that question over the last year or so, whenever I tell people I have Asperger Syndrome. Apart from the ones who get sightly irate, as if I’m pitching for some special status that they can’t access, the response I see the most is gleeful fascination. Not, like, Can you read my mind? but, What are your special superpowers? There’s a visible thrill to being in the presence of a real life Rain Man.

I’m afraid that I quickly become disappointing. No, I’m not all that good at maths, and I can’t remember long sequences of numbers. I’m unable to look at a city landscape and then go home to draw it in minute detail. If you name a random date in history, I can’t tell you what day of the week it fell on. I would be particularly hopeless in a casino, because they’re noisy and full of people, and I wouldn’t be able to concentrate enough to finish a sentence, let alone count cards.

We have all been trained into a bizarre understanding of Asperger’s by novels and films. We’ve spent a long time talking about it from the outside, based on people who have been paraded in front of us as luridly ‘different’. The reality is not nearly so exotic. My everyday experience is often of sensory overwhelm, by loud noises and strong smells. When somebody touches me, I can feel a burn on my skin for half an hour afterwards. It seems to me that people spend most of their time simultaneously making noise and poking at me. I accept that this may not be their intention.

I’m sure there are gifts, too, but they’re just not as elaborate as people expect. I actually like my way of seeing the world, despite its complexities. I think people like me are often intensely creative and kind, but that’s invisible because the Aspies who recite train timetables are more other. God forbid that we might sometimes be more aspirational than odd.

But anyway, that’s why I wanted to write these letters. I want to try to share what it’s like to live inside my brain. I can’t express it in one, blunt essay. It will be slow, incremental. I hope it will challenge you into a different understanding. Most importantly, it will be my own, unique perspective, and not a state-of-the-union address. Other people will live autism differently. All of them have superpowers, but they’re profoundly human ones.

See you next week,
Katherine

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