Tinyletter 17: Exhaustion, woe, adaptation…and a sneaky peek at my book cover

Hello,

Well, it’s been a while. Sorry. I last wrote to you when everything seemed to be picking up again: H was on the mend, my laptop had survived being run over, and my 40th birthday had passed without incident.

But soon after, life happened. Well, in reality, life continued to happen. I had been suffering from abdominal pain for most of this year, and was charging on through it, as I do, trying to pay no attention. It always takes me a long time to realise I’m in pain anyway – I tend to feel it as confusion and I have to unravel what’s going on. By the end of September, though, there was nothing to be confused about. The grumbling pains that I’d had all summer suddenly erupted into something far harder to ignore.

We’ll move through the weeks that followed with quick montage; tests, antibiotics, painkillers, a dash to casualty, an emergency appointment with a specialist, cameras shoved in unpleasant places, agonising waits to find out just how serious it was. The end result is that I have three kinds of bowel disease, all of which more usually appear in men over 70. Never being one to conform, I’m slightly pleased with this.

I’m still working out how to get back on my feet again, and no advice has been forthcoming yet. I’m taking it very easy and reaching for the painkillers when I have to. It’s boring to talk about, so I won’t. But what took me by surprise is how slowly it had all crept up on me: the incursion of illness, the sense of abiding exhaustion. Only in the aftermath, when I’ve been forced to stop, have I realised what a toll this has been taking on my life. I’ve gradually given up inviting friends over for dinner because I couldn’t face the labour; have been retreating to bed ever-earlier; have surrendered my house to a state of entropy that has seemed beyond my control.

Not once, in all of this, did it occur to me that I wasn’t coping anymore. I didn’t notice I was ill. I didn’t notice I was too exhausted to keep up with normal things. It just slowly happened, and I did nothing about it until I was forced to pay attention.

One of the problems, I think, for autistic people is that were so busy with the work of adapting to the outside world that the serious stuff gets lost in the general struggle. Everything feels difficult anyway, so it didn’t surprise me in the least that my belly always hurt, nor that I was rushing to the bathroom every twenty minutes. Well, I’m paying attention now, and I’m having to push back against some of the expectations of capability that I’ve built around myself. It’s agonising, but it’s also high time.

I spent all of last year writing a memoir about how I learned I was autistic, and I often forget that no-one has had the chance to read it yet. I’ve worked hard to detail the ways in which I don’t cope, and although I feel a little anxious at exposing that to the world, I also can’t wait to explain myself better.

Well, the time is finally close. The Electricity of Every Living Thing can finally be pre-ordered (it’s out in April) as as much-beloved Tinyletter readers, you get the first glimpse of the cover before I start splashing it everywhere like a power-crazed toddler. Here is is. I hope you like it.

The Electricity of Every Living Thing Cover

See you soon,
Katherine

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Tinyletter 16: Laptops, and other things that aren’t broken

Hello,

The patient is healing well. So well, in fact, that he was able to accompany me on a 35 mile panicked round-trip last night, after I realised I’d placed my laptop on the roof of my car and then driven home. Okay, he winced as we went over the speed-bumps and round sharp corners, but he was, I think, keen to resume his role of imposing sanity on the chaos I routinely cause.

To be honest, my response to the missing laptop was, roughly, ‘Everything’s ruined, there’s nothing that can be done, and I’ll die poor and lonely, having achieved nothing.’ I’m not the world’s greatest problem-solver. I just can’t see the steps that would take me to a solution.

H, on the other hand, is methodical and logical. The first thing he did was to go outside to my car, and check the laptop wasn’t still there. Then, he noticed the perfect arc of scratches in the paint, where the damned thing had clearly slid off. He calmly suggested that we go and find it.

‘It’ll be ruined!’ I said. ‘What’s the point?’

‘Worst case scenario, we have evidence to show the insurance company,’ he said.

Now H is out of hospital, I think I’ve found it harder to adjust back to normal life than he has. The transition into crisis mode was unavoidable and well-signposted: you just had to go along with the routines of the hospital, answer endless phone calls and texts, and try to make sure that nobody died. When it came to an end, I found myself feeling that it had all been too abrupt. I had to sit down on Monday and get back to work as if my ears weren’t still ringing. I felt like I needed a week to process – or at least to sleep it off. I’d been flipped over like a beetle, and my legs were still struggling against thin air.

The laptop thing was inevitable, really. Even at the best of times, I can’t keep track of all the peripheral objects in my life – my existence is one, long hunt for my phone, my keys, and my work ID card. I simply have no idea how you’re supposed to keep your mind in the physical realm long enough to keep track of these things. But in times of stress, I get even more clumsy and distracted than usual. There is collateral damage, which looks entirely avoidable to other people. Trust me, it isn’t. I’m expensive to run.

H was right: we did find the laptop. Some good Samaritan had picked it up in the car park and left it in my studio. Its edges were crimped where it hit the ground and there were tyre marks running over the case. Still, I opened it up and the screen glowed to life as if nothing had happened at all. It was just a little battle-worn, that’s all. I know how it feels.

See you next week,
Katherine

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Tinyletter 15: A memento mori and an awful lot of coffee

Hello,

At certain points in life, mortality has a way of clearing its throat and making itself known to the cabin crew.

For example, on my 30th birthday, I arranged to meet a friend in a pub, and while I was waiting for her to arrive, I realised I’d barged in on an Irish wake. I tried frantically texting to suggest another venue, but she got there before looking at her phone, and, by some bizarre quirk of fate, was immediately mis-recognised by one of the children of the deceased as having played the violin at the funeral earlier that day. Irish hospitality being what it is, they wouldn’t hear of us leaving, a problem compounded by the fact that my friend was rather enjoying the attention. Soon, I was drinking free Jameson’s and reflecting on being once decade closer to death, while she graciously accepted compliments about her virtuosity on the fiddle.

Cut forward ten years, and as I’m on the home straight towards my 40th (next Monday, since you asked), H lands in hospital with a ruptured appendix. Despite surgery, there’s still an infection, somewhere, somehow. Suddenly, all of life is changed. Hospitals have their own logic and timescales, and they demand that you fall into step with them. Tests come at odd times, their results only reported in passing, hours later. Information is handed out as a jigsaw you must piece together. I feel like I have to be on constant watch: this system feels deliberately impenetrable to me, and I don’t trust it.

He’s been in for a week now, and counting. He’ll get better, of course. It’s just hard not knowing when. There’s no convenient narrative to make sense of it all. And it’s like having one, giant memento mori land on the front lawn, and stare at you with its empty eye sockets for a while.

There’s a wonder to it all, too. Casualty on Saturday night was full of people quietly looking after each other. There’s gallows humour on the ward, men thrown together in hideous circumstances cheering each other on when they take their first post-operative steps and wincing at each other’s pain. There’s the team of friends and family who have mobilised to take care of both of us in this impossible time. It’s hard not to come out of it all feeling slantingly grateful for all of it. Yes, you are reminded that death will come one day, but also, joyously, that it hasn’t happened yet – and that, before the advent of all this terrible hospital machinery, it might have done already. More than that, you know that when it does come, life will continue to be ushered on by kind hands, rising up to catch you the best they can.

In his final days, my grandad lay in his hospital room, gripped mine and my cousin’s hands and laughed, ‘A little stay in hospital does you good!’ I now see what he means. I’ve been given a loyalty card for the hospital coffee shop, and I think I’ll ask if I can keep it when it’s full. I’m going to put it in a frame above my desk, the perfect memento mori for an age when mortality is an endlessly-deferred dream. I’ll take my free coffee first, though, because you also have a duty to keep going.

See you next week,
Katherine x

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Tinyletter 14: A little swim in the sea

Hello,

This weekend, I visited my local outdoor leisure pool.

Yes, I know. I should have known better. But the problem is, I sometimes have to agree to the things that Bert wants to do. I’ve spent the year avoiding the things he loves: Legoland (nope), actual Lego (too crunchy; nope), birthday parties (ugh; nope), soft play centres (only with ear plugs), rave music (how did that even happen? Nope). God knows, I’ve tried to find a disciplinary offence worthy of throwing out his Hot Wheels set, which makes the most dreadful noise. I really thought I’d spawn a quiet, bookish child, but that is very much not the case.

Even I couldn’t reasonably refuse to take him to an outdoor pool on a hot day. I gamely put on my costume, got into the pool, and then made my excuses, got out again, and changed back into my clothes. The whole experience lasted five minutes, tops. So many people, all pushing and shoving and shouting and swimming at right angles to the lanes. So many glancing touches and unexpected splashes of water. I find it unfathomable that people do this for fun. Personally, it activated my fight-or-flight instinct.

I love being in water, though. There are times when a bath is the only thing that will reset me. When I used to have a roll-top bath in my old house, I would sometimes devote whole days to sitting in it, neck-deep in warm water, a book pressed short-sightedly against my nose.

Most of all, I like swimming in the sea, especially in really cold water. It’s never busy, and once you’re in, it feels like there’s nothing in the world but the sea and the sky. I often think I like everything quiet, but when I’m swimming, I realise that’s not right at all: my ears are filled with noise, but it’s gentle noise, undemanding and rhythmic. Sometimes, if I put my head underwater, I can hear the faint tilling of the shingle on the sea-bed. But even after I get out, I feel like I’ve absorbed the rhythm of the waves for hours to come.

I’ve been thinking about sea-swimming a lot this year, while I’ve been writing The Whitstable High Tide Swimming Club. I’ve been thinking about the magic of the sea, the way that it draws people together, and the way that it quiets their restless souls. I’ve been watching its different moods more closely than ever, and deliberately dipping into the waves on days when I’d normally stay warm and dry. You’ll be glad to know that I take my research very seriously.

I know that swimming pools are safer, warmer, more predictable. I know that they come with changing rooms and hot showers. But for me, the sea offers something entirely other. a wide, open space in which to float, literally and metaphorically. Luckily for me, Bert love sea-swimming too. Perhaps one day, he’ll even come to prefer it to the hustle of the leisure pool.

See you next week,
Katherine

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Tinyletter 13: My books? I don’t like to talk about them

Hello,

I’m writing this letter as a displacement activity – I really ought to be packing. I’m off to to appear at the Edinburgh Book Festival tomorrow and, well, it’s the beginning of the worst part of the publishing cycle for me.

I’ll just say it straight – I hate talking about my books. It doesn’t matter if it’s the novels I write because they’re entertaining and fun (like The Whitstable High Tide Swimming Club), or the memoirs that I pour my whole self into. I hate talking about them either way. And it doesn’t matter if the person asking is a friend, relative or a complete stranger. I’m equal opportunities about these things.

I don’t write because I want attention. I write because I’m flooded with words if I don’t. Stories help me to make sense of the world: they are the end result of a process of observation, analysis, research and exploration. They are a study in themselves, a way of knowing. Writing lets me problem-solve, particularly when it comes to understanding other people’s behaviour; they’re a process I can work through to find the answer, like a baroque algorithm. It’s surprising what they spit out eventually, often after months of work. They know things that I don’t.

At Edinburgh, I’ll be talking about The Electricity of Every Living Thing, my memoir of the year in which I set off to walk the South West Coast Path and discovered that I’m autistic along the way. It’s a particularly vulnerable, intimate book, exploring ideas and feelings that still don’t feel quite set. That’s the power and beauty of it, I hope. But, equally, I’ve moved on. I already disagree with some of the thoughts I had at that time, but I’ve fought hard to resist the urge to revise it to meet my current mindset.

The mistake would be to assume that by reading my books, you read me. At best, they capture what I thought at one moment in time, often a long while before publication. But more likely, they only ever reflected on part of me in the first place. I’m a writer: I construct a version of the truth that’s safe enough to share. Most importantly, writing is my act of communication. When I type ‘THE END’, I’ve said all I want to say.

That doesn’t mean that I’m one of those awful, hostile interviewees, I promise. I do my best not to squirm onstage and, frankly, I’ll talk so much about everything else that you’ll barely notice. But take me to one side afterwards and ask me about the actual text, and you’ll get the same line that I hand out to my dearest relatives and oldest friends: ‘I don’t talk about my books.’

Awkward? Yeah. Wilfully difficult? Probably. But am I sorry? Not really. We’re all allowed a break from the day job sometimes.

See you soon,
Katherine

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Tinyletter 12: And…rest

Hello,

Sorry I haven’t emailed for nearly a month. I do feel a bit guilty, but not all that much. What can I say? It’s the summer holidays, and my time’s stretched tighter than ever and with Bert off school and a book to finish by the end of August. I know: excuses, excuses. The truth is, sometimes you just need a rest.

Rest doesn’t really come naturally to me. I slantingly admire people who can devote a whole day to binge-watching a boxset; I’m too restless for that. Mostly, I can’t even get to the end of a movie. It seems like a long time to sit still. Unless I’m completely fascinated by the subject matter, my attention dips after a while, and I’m prone to drifting out of the room fifteen minutes before the end, when the story is delivering its final payload. Meh. I get the gist.

I need rest, though. My brain won’t ever stop generating words and stories and ideas, and that means I’m constantly working. I’m not complaining; that’s how I find my earth. In actual fact, my real exhaustion comes when I don’t get the time to write. The words keep coming anyway, but I can’t process them, so they wake me up at night, and I constantly have to fight their incursions into my mind so that I can interact with the real world. If the process of writing gets deferred for too long, it makes me unwell. True rest, for me, is being able spend time with my thoughts every day, without interruption.

The ‘without interruption’ bit is key. I don’t mean people dropping into my office for a chat (although please don’t). I mean the obligation to constantly check emails too, and perform the mental acrobatics of diplomacy and understanding that this requires. I mean interacting over social media, with its tightrope of pleasures and demands. I’m not antisocial, although I know I often seem that way. I’m just endlessly existing near the limit of what I can manage. In the middle of the University year, I usually go way past that limit. Everything gets cancelled. Service interrupted.

It’s interesting to see how my sociability comes back after a few weeks of rest – my kind of rest, that is. I am beginning to wonder how old friends are doing; I’m tolerant of music again, of the bustle of cities, of social hugs. There are moments in my year when I sincerely believe that I’m a natural hermit. But here, mid-summer, I realise that instead I’m not living the life that I need to live.

The problem is, I’m not quite sure how to solve that.

See you soon,
Katherine

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Tinyletter 11: Meeting you for the first time. Again.

Hello,

I’ve got to the end of my first year at school.

Sorry, I mean Bert’s got to the end of his first year at school. The thing is, though, it’s been utterly straightforward for him. He couldn’t wait to get there, and has showed no hesitation from the first day onwards.

I, however, worried about it for months before it even started. I had heard things about school gate cultures; about cliques, disputes and humiliating snubs. I was pretty certain I wouldn’t fit in. I knew, also, that I would resent the demands that school made on me, having grown used to the cosseted service culture of a private nursery.

I was right about that – I’m infuriated by the endless petty, chaotic demands that school makes on my time (Bring in four jars of mixed sweets for the fair! Plant a sunflower seed! Help your child make a model of a pirate ship! Put £1.30 into an envelope and drop it personally into the office – not in your child’s schoolbag!).

On the other hand, I’ve been surprised how gentle an experience the school gates have been. Most people will nod and say hello, or else they’re absorbed in their own world. I suspect other people would be offended by this; would be seeking some greater level of engagement or friendship and would feel rejected. Not I. I already have my friends, and they’re carefully-selected. A friend whose children are at another local primary tells me that they all go on a ‘mum’s night out’ once a term. I am so very grateful that I don’t have to turn down that particular delight.

Perhaps that’s one of the ways that life is easier for me than others. I’m happy to walk quietly alongside people without wanting anything from them. I have a deep empathy for strangers’ desire to be left alone. I’m not convinced that it always gets read as empathy, but there you go. I also understand that I can’t control what other people think.

But then I probably only recognise six other parents anyway. My face-blindness is such that most faces I encounter won’t stick in my brain. There’s a small category of faces that I find so hard to process that my eyes won’t fix on them even when they’re standing in front of me; their features seem to shift around under my gaze. In most cases, familiarity eventually wins through, but this is often because I learn to remember people mechanically, through words. Height, hairstyle, eye colour, dress sense; friendship groups, voice, interests, similarly to other people. I can make a deliberate mental note of these things. It works for as long as no-one has a makeover, which happens surprisingly frequently. There’s a school gate mother who I think cut her hair short at some point, which means I can no longer make her out at all. Someone else confided in me a couple of months ago, and I haven’t been able to recognise her a second time.

These people are probably somewhere right now, complaining I’ve snubbed them. It makes me miserable to know that, and, at the same time, to know I can do nothing about it. I watched all of Bert’s classmates flood out of the classroom door today, and was certain that I couldn’t identify a single one of them in a lineup. Their faces might as well be blank. I have an anxious moment every afternoon that I won’t even spot Bert, and sometimes I have to wait for him to recognise me first. There are just so many other small, blonde boys.

I try hard to abandon my sense of shame about this. It seems like such a basic function of humanity to know the people around you. But think of it this way: I hold few playground grudges. I turn up every day, look around me, and smile at anyone who catches my eye. I might say a few words, and they’ll always be friendly. I used to think that my lack of facial recognition was a form of arrogance, that I just didn’t care enough about others to let them register in my memory. Now, I see it as a form of innocence. I’m pretty much seeing you anew every day. That’s not such a terrible thing.

See you next week,
Katherine

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Tinyletter 10: Skinny dipping? Yup. I have no f*%&s left to give.

Hello

I have been running.

I‘ve started running many times over the last ten years, and it’s never really stuck. I’m not a natural runner: every time I start Couch to 5k, I end up falling over, or getting frustrated, or developing shin splints or plantar fasciitis because of my awkward gait.

If Michael Jackson is a lover not a fighter, then I’m a walker not a runner. I like to take my time and notice things along the way, rather than to fight against my own screaming body for thirty dreadful minutes. But needs must. I have to shed a little weight, and running is a short-cut that tides me over until I get the time to really, properly walk.

Because I am still in the first flush of passion for this new bout of running, I carried on last week despite the heat. I hate being hot, and in these conditions my mouth was drying out as soon as my trainers hit the path. I persevered, but as I pounded alongside the beach, I noticed that the tide was in. That’s no use to you, I told myself; you haven’t brought your cossie. But then I thought, what the hell. I decided to finish my run on a quiet bit of the beach and swim in my underwear.

I don’t think I could have got to the end of my run without the promise of that swim. But when I finally crunched down the shingle towards the sea, I found two teenage girls sitting there, concealed from view by the wild flowers that spring from the shingle in the summer. That’s the end of your swim, I thought. There’s no way I’m stripping down to my smalls in front of them.

But then I realised what a loss it would be if I didn’t; and how many other times in my life I’ve paused at the edge of the water and thought I’m not good enough. So I did it. I took off my sweaty running tights and t-shirt, and waded into the sea in my sports bra and wicking knickers. The girls didn’t even look up from their phones, and I swam in the cool, smooth water until I felt human again.

I’m forty this September, and I’ve lived all thirty-nine of my previous years believing that I’ve somehow failed to pull off being human. I’ve agonised over my inadequacy, my awkwardness, my inability to cope with the simplest situations. I’ve spent my whole life believing I’m a different species. I just don’t care anymore. I have no fucks left to give.

A couple of days later, I swam under the solstice sunset in even less clothing. The sea stayed luminous long after the sun dipped below the horizon, and I felt as though I’d unlocked a hidden level in this world, one that only comes when you truly jettison your terror of what other people will think. This coming year, I plan to keep tight hold of that key.

See you soon,

Katherine

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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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