On belonging somewhere (Part 1)

Some of the paragraphs towards the end look slightly different in terms of formatting: the font’s a little lighter. No, I don’t know why this is and I don’t know how to fix it, but if you do please lemme know. Bloody WordPress.

I’m still catching up to regular blogging after a ton of work on my novel. It’s now done! Ha ha no it’s not. It’s out with beta readers and I’m waiting for feedback, after which there will be MORE CHANGES. First second third draft, send to betas, have them rip the flesh of it to pieces, use the blood to fertilise more changes. It’s the circle of life.

So what did I not write about? I did sort of mean to write about falling and smashing up my face, breaking my noz, and getting two black eyes on the way to the London Pen Show. Then I got to go around the show half blind (couldn’t wear my glasses) and off my tits on the excellent painkillers given to me by the good folks of University College London Hospital. Bless their souls. I managed to have an excellent time at the show. And what’s more, the slightly different shape that my noz now has actually holds up my glasses really well.

I didn’t write about the excellent pen my dad got me for Christmas. I may do this at some point.

I recently took part in a focus group activity for Autistica. (There are a lot of autism-related charities about and many of them are extremely questionable. The worst seem to operate in the US. Of the British ones, the National Autistic Society and Autistica are very much the good guys.) It was very odd being in a room with a bunch of people who have the same odd struggles with the world that I do. Things we could agree on included: car horns are the worst thing invented, crowds are fuckin no, and the world is pushing us back indoors. There are very few places that are reliably quiet these days. Even way before my diagnosis, I wouldn’t go anywhere without knowing where the nearest library was. I had library cards for Greenwich, Bexley, Bromley, Westminster, Islington, Lewisham, and Brighton, the University of London and a Sussex University Alumni library card. The reasons were BOOKS YAY (inherently soothing to have about) and libraries were reliably quiet. I need to be able to escape sensory overload. Of course now public libraries are not quiet. There’s toddler rhyme time, the knitting group, children running around shrieking. The quiet study rooms are now meeting rooms for hire. I understand why they’ve done it. Budgets have been cut to the bone, libraries are struggling and other services have vanished. So libraries have become community centres. But it has been really difficult to face.

The other thing that drives me crazy is something that comes up every time that someone takes part in research about autism. It always begins with a standardised questionnaire that amounts to HOW AUTISTIC ARE YOU? This same questionnaire is often used as part of diagnosis. It’s a pile of crap, and I’ve no doubt that it screws with all sorts of results. I’ve mentioned this to various researchers and they generally agree with me but add, helplessly, that it’s just how it’s done. So I thought I’d answer these questions in the way that they come across to the autistic mind.

Straight up there are a couple of problems that apply across the whole thing. For one thing, this is how autism is more likely to present in men and boys rather than women and girls. That’s actually really important because this fucking questionnaire is probably a big part of the reason why women are underdiagnosed. For another, we like to give specific answers. Precise answers. A questionnaire that presents vague statements and asks me to agree or not doesn’t allow me to do that. SO HERE WE GO.

I prefer to do things with others rather than on my own. I like to be alone a lot of the time. So I’ll grant that this one sort of makes sense.

I prefer to do things the same way over and over again. WHICH THINGS? The reason why this question is in here is because this is something that neurotypical people notice about us, but it’s not really something that I notice about myself. It’s not so much that we do things the same way over and over. It’s which things we do that way. Getting anxious if you don’t take the same route to work every morning seems silly to neurotypical people. Watching Eastenders every single episode for twenty years is fine.

If I try to imagine something, I find it very easy to create a picture in my mind. The ol Temple Grandin thinking in pictures thing? Many, if not most of us, don’t do that.

I frequently get so strongly absorbed in one thing that I lose sight of other things. The wording of this is really bad. I’m pretty sure that “lose sight of” is supposed to mean “forget about”. But I have to remind myself of that because my first thought is that of course when I’m looking at something, I can’t see other things, because that’s how vision works.

I often notice small sounds when others do not. OK this is valid. I think.

I usually notice car number plates or similar strings of information. Which other similar strings of information? Generalising from broad to specific is hard for most of us. This one is particularly vague. I cannot think of a “similar string of information” to car number plates, and not just because I’m now thinking of literal string.

Other people frequently tell me that what I’ve said is impolite, even though I think it is polite. Questions about how you appear to other people are all over the place. No, other people don’t frequently tell me that what I’ve said is impolite. And they didn’t do it before I started work on my social skills, either. And many of the things I said back then I now realise would have been rude, inappropriate, or hurtful. I lost friends all over the place. But they didn’t tell me I was being impolite, because people don’t. Not Brits, anyway.

When I’m reading a story, I can easily imagine what the characters might look like. What level of imagining are we talking about? Can you imagine what an elephant looks like? Can you imagine it well enough to draw a realistic looking elephant from your mind? What about the bit where the head meets the body? Did that come out looking right? This is vague.

I am fascinated by dates. Not particularly, but OK.

In a social group, I can easily keep track of several different people’s conversations. OK this is definitely something I have trouble with. The question is fair.

I find social situations easy. This one is fair… I guess? Although some social situations are easier than others. Most are pretty tough though. 

I tend to notice details that others do not. How the fuck am I supposed to know which details someone else has noticed?

I would rather go to a library than to a party. 4REALZ bro. Although as noted above, libraries are not necessarily any more peaceful than parties these days.

I find making up stories easy. I’m not sure if this is supposed to make me more autistic or less, but I’ve just finished writing a novel so I guess that’s a thing.

I find myself drawn more strongly to people than to things. Which people? Which things?

I tend to have very strong interests, which I get upset about if I can’t pursue. OK sure.

I enjoy social chitchat. Fuck you, social chitchat.

When I talk, it isn’t always easy for others to get a word in edgewise. I understand where you’re going with this, but this is figurative language again. This kind of questionnaire is a place where you shouldn’t use figurative language, because you know damn well that many autistic peeps struggle with it. Personally I’m good with figurative language, but still… In any case the “talks too much” thing is once again about another person’s perception, not about my experience.

I am fascinated by numbers. Not really but ok.

When I’m reading a story, I find it difficult to work out the characters’ intentions. Which freaking book are we talking about? I get what Frodo’s going for. What the hell Lady Penelope sees in Fabio is a different matter. WHICH BOOK?

I don’t particularly enjoy reading fiction. That’s a discredited idea about autism. On an anecdotal level, I have never met a single autistic person who doesn’t adore fiction. It’s a particular marker of autism in girls and women that we are often obsessive readers.

I find it hard to make new friends. I find it hard to make new friends when presented with a completely random group of people, because most people out there are not very much like me. Every outlier has this problem. Looking at it from a different angle, others find it difficult to make friends with me for the same reason. I struggled with it at school because I was unable to find others whom I could understand. These days I have the best buddos in the world. Most of them are either autistic or have some strong autistic traits. Or they’re just lovely.

I notice patterns in things all the time. Which things? Everybody notices patterns in things. It’s a thing that humans do. Again, it’s recognising patterns in things in a way that neurotypical people think is odd that is considered noteworthy.

I would rather go to the theater than to a museum. What mood am I in at the time? Can’t I love both?

It does not upset me if my daily routine is disturbed. OK this is valid. Routine ruiners can fuck off.

I frequently find that I don’t know how to keep a conversation going. This isn’t about social deficit. This is about the conventions of neurotypical life. The expectation that you’re going to talk for the sake of talking about stuff neither of you really care about: the weather, where a stranger is going on holiday, how they arrived at this destination etc. I find it difficult to talk about things I don’t care about, so the conversation stalls. Looked at another way: why the hell do you guys insist on talking about these things when you’ll have forgotten the answers within ten minutes anyway?

I find it easy to ‘read between the lines’ when someone is talking to me. There are a couple of reasons why this question is ridiculous. Firstly QUIT IT WITH THE FIGURATIVE LANGUAGE. This particular expression is one I really hate. There are no lines when someone is speaking to you. It makes me want to try to literally read between lines.

You’re asking if I miss subtext. Is it not obvious why this is stupid? If I missed the subtext, I did not know it was there. Therefore I do not know that I missed it. Looked at another way, you could ask why neurotypical people can’t just say what they mean but have to go for low level dishonesty the whole time.

I usually concentrate more on the whole picture, rather than on the small details. Too vague.

I am not very good at remembering phone numbers. I’m pretty good at remembering phone numbers, which I suppose is the expected ASD answer. But that’s because I’m old enough to remember a time when people didn’t have mobile phones, and you had to dial the numbers manually. These days nobody has to remember numbers so it’s probably something that people don’t really know if they’re good at.

I don’t usually notice small changes in a situation or a person’s appearance. Are we talking about a situation or a person’s appearance? Because those are two different things and the first one is way the hell too vague.

I know how to tell if someone listening to me is getting bored. Once again, this is about how we are perceived by other people. Once again, it’s a stupid question.

  • If I’m talking to someone and they’re bored, and
  • I don’t know that they’re bored,
  • I don’t know that I have a problem recognising if someone is getting bored, do I?

I find it easy to do more than one thing at once. Too vague. Are we talking about eating and watching TV, or playing the violin while snowboarding?

When I talk on the phone, I’m not sure when it’s my turn to speak. This isn’t SO bad, in that it does actually relate to the ASD experience. But it’s not really that big a part of it. I don’t think there are any spectrumites out there who’ll answer the question of “what does the word autism mean to you?” with “I’m crap at phone calls.”

I enjoy doing things spontaneously. A bit vague, but I understand what you’re getting at. Surprises are Satan’s diarrhoea.

I am often the last to understand the point of a joke. Whose joke? What kind of joke? I often don’t understand the jokes of neurotypical people because THEY’RE JUST SO DAMN STUPID. The jokes. Not necessarily the people. “Ha ha I just lied to you and it’s hilarious because you believed me!” is the worst of these. But it’s funny because… no, I’ve got nothing.

But bring a group of spectrumites together, and dammit we’re hilarious. Ain’t no lie.

I find it easy to work out what someone is thinking or feeling just by looking at their face. I guess not. Eh. Or you know, you could just frickin tell me. I have a suspicion that many – if not most – neurotypical people are also terrible at this, but just don’t realise it.

If there is an interruption, I can switch back to what I was doing very quickly. What was I doing? What was the interruption? I’ll grant that I don’t like interruptions much but this is still too vague.

I am good at social chitchat. Valid question. Social chitchat is Satan’s projectile vomit.

People often tell me that I keep going on and on about the same thing. Again, this is filtering the ASD experience through the neurotypical experience. I know I keep going on about this, but having your life reduced to “how weird do you look to normal people” is humiliating and disempowering. What is this question about? It’s about those aspie obsessions. Yes we talk about them.

But I sort of want to shake the person who reduced my obsessions to this stupid question about how they look from the outside. Do you have any idea of the sheer, radiant joy of them? Do you understand how much meaning they bring, how much satisfaction? How frickin calming it is to do Lovely Pen Bath Time so they’re sparkly, put them in the bundles of silica gel packets to dry, and then reassemble them, fill them with some glorious ink colour and watch the nib glide across the smoothest, whitest paper, leaving a trail of gorgeous colour behind it? Or learn about their history, the design behind them, how to repair and tune them? No, you don’t. You want to reduce all of this to “do other people find you annoying?”

My answer to the actual question is no, they don’t. These days I’m careful not to be too overbearing about my obsessions. When I was a kid I did talk endlessly about them. But I didn’t get told that I talked too much about the same thing because again, people don’t tell you you’re boring. They tell other people you’re boring, and they spend less time with you.

When I was young, I used to enjoy playing games involving pretending with other children. Nah, my imagination is powerful enough that I don’t need other kids to prop it up.

I like to collect information about categories of things (e.g., types of cars, birds, trains, plants). I suppose. Are fountain pens a category? I suppose they are.

I find it difficult to imagine what it would be like to be someone else. Literally nobody knows what it would be like to be someone else. Neurotypical people just delude themselves that they do.

I like to carefully plan any activities I participate in. We don’t really have a choice about that. The world is not set up for us. If we don’t plan ahead there’s often a chance that something horrible will happen. Look, you can ask this question of any disabled person. You bet someone who gets about in a wheelchair is planning ahead, because otherwise they may discover that there’s no way for them to get to the venue, and then there’s no way for them to get through the door.

I enjoy social occasions. Which social occasions? I like going to the zoo with a small group of friends. Throw me a surprise party and I’ll behead you. This is the neurotypical perspective: it’s all about liking the occasions they expect us to like.

I find it difficult to work out people’s intentions. I find it difficult to work out neurotypical people’s intentions, because they frickin’ lie about them all the time. But sure, the deficit is mine.

New situations make me anxious. New situations are Satan’s bloodied phlegm.

 I enjoy meeting new people. Fuck new people. Haven’t you noticed how many people are already about? You think I need more? People are plentiful and their value low.

I am a good diplomat. OK maybe don’t use the word for a literal job?  I don’t really know what is meant in this context. But you know who is a damn good diplomat?

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No, not Orianna. Witness her scorn for the lovely pen next to her. Behold Ezri, the lovely pen. She’s my new Diplomat Traveller, in the flamey limited edition. She was an impulse buy. Now we do pen talk, my friends, and then back to the ASD stuff.

Is she not beautiful? She has a flame-blasted body made out of… er… nobody seems to specify except that it’s metal covered in a thin lacquer layer. I can see that. You may recall that I’m not big on pens with metal bodies. However, you may also recall that I am big on funky colours and this one is pretty great. It’s being touted (not by Diplomat themselves, but by many pen nerds) as a more affordable substitute to the Kaweco Lilliput Fireblue. This is a bit silly: yes the finish looks similar but they’re completely different pens.

The Diplomat is a lot cheaper. You can pick it up for about £40-£45, or half that if you don’t go for the flamey version – but really, why would you not pick the flamey? It has a slim body, which is obviously a little on the heavy side. It does not post very well, which is a source of irritation to me: it would surely have been quite easy to make it post properly. I got her with a fine nib, which is really very fine – more like Japanese F or even EF than German. I have seen complaints that the medium is a touch too broad. So maybe there’s no middle ground to be had. Or maybe this particular one came out a bit odd. It’s a JoWo stainless steel (a #6 I think), with “Diplomat since 1922” engraved on it. They’re big on the 1922 thing. It’s as smooth as you could hope for with such a fine nib, and it’s reliable. Not a stunner but very good for the price point. Ezri takes a standard international C/C.

Diplomat are one of these companies that stay in the background: old, established, solidly German. But they don’t shout much. They just say the same thing: hello, we’re a German brand that’s been going since 1922 and we believe in craftsmanship. And that’s about it. Compare that with Montegrappa.

So I like Ezri very much. My favourite thing about her, however, is the fact that Diplomat actually specify that each Traveller was attacked with a blowtorch by their craftsman Gerald. Who is Gerald? I don’t know, but now that I know he exists and torches pens all day (or did – I don’t think he’s still doing it) I kinda love him. Gerald, if you ever read this: high five, my friend.

A song that is almost certainly not about autism, but which makes me think of the best bits of it for some reason. Magic Garden, originally written by Jimmy Webb and recorded by The 5th Dimension. Not much of a hit for them, but my beloved Dusty did a rather lovely cover.

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And now we return to ASD questions.

I am not very good at remembering people’s date of birth. I’m pretty good at it, which I suppose is the expected ASD answer, but again, it’s a weird one to ask.

I find it very easy to play games with children that involve pretending, Just because I really don’t want to do it does not mean it’s difficult.

So what am I getting at with this? The conversation about autism has excluded us, which has resulted in everything being filtered through the neurotypical gaze. When you start out with this kind of questionnaire as standard for every possible iteration of ASD – even as a diagnostic tool – you may make a nonsense of the results. It’s like trying to work out if someone’s blind by saying “other people regularly tell me how annoying it is that I keep tripping over their possessions and damaging them.”

When a kid gets a diagnosis, assuming that they do not have additional learning disabilities which render them more disabled, the specialists tend to go with the line that autism comes with strengths as well as deficits. But the diagnostic criteria define the condition solely in terms of deficits. Not only that, but it pathologises traits which are not inherently bad. Many other “deficits” are environmental in context. As I stated above, my major obstacle in making friends is that most people do not have the brain wiring that I do. That doesn’t make me “unable to make friends” – it’s like saying that left handed people are terrible at drawing because you’re only studying how well they draw with their right hands.

So what would you do if you were to put the autistic experience front and centre? Well, I think it’s important to drop the fixation on how we look to other people. Or at least make it less prominent. If you ask me what I think marks out the autistic experience, there are two factors which I would highlight. The first is the sensory experience, which is an aspect of autism that was largely ignored until fairly recently. Kids who lash out, cry or scream because they’re suffering from painful sensory overload were just regarded as difficult children who needed to be “managed” better.

Sensory input: it’s a hell of a drug. Most of us have senses that are wired in odd ways. I am significantly overwired for sound. On the plus side, this means that I have taken very naturally to music. On the minus, well, I get overwhelmed quite easily and always have done. Things that are particularly intolerable to me are car horns, crying babies, people shouting, vacuum cleaners, hand dryers and any kind of power tool. Loud noises are bad when they’re sudden and unpredictable, and they cause physical pain. Conversely, my brain doesn’t naturally pay a lot of attention to visual input. It’s not that my vision is poor – well, actually it is, but it’s corrected by glasses – but I have to drag my attention back to it. In a noisy environment, I actually find it very difficult to assign enough attention to avoid bumping into things. Anyone who’s had to walk with me along a crowded street will know that they’re constantly having to steer me to avoid disaster.

In terms of which things make me feel disabled, this is the main one. The other things are:

  • I get lost easily. Very easily. I can’t read maps so it’s a real problem. I love the fact that I can now use Google Maps on my phone as a satnav and receive verbal instructions in audio format. This is magnificent.
  • I find it difficult to process things quickly. My brain works well, but I need time to think. Often I hear speech as sounds rather than words, and have to consciously process what was just said into words, think about those sneaky tricks neurotypical people play to avoid saying what they mean, consider the facts, devise a response and then say it. One of the most stressful things about conversations with strangers is being put on the spot constantly. It’s also a trait of autism that many people don’t really think about. It makes it impossible to process a long list of instructions unless they’re written down; it makes it very difficult to answer a stream of questions.
  • I am a fussy eater. I am not being difficult. There are a lot of foods that I find physically repulsive because of the texture. I cannot just “deal with it” and eat them. If you like eating everything put in front of you, you are lucky. Not morally superior. I would love to be able to do that.
  • I am moderately faceblind (scientific name: prosopagnosia, which means “face dunno” which I like). This is not necessarily an autism thing although the two often do show up together. Do not expect me to recognise you again if we’ve only met once, or even if we’ve met a few times far apart. There’s a good chance I won’t recognise you if you show up in a different context, or if you make a major change to your appearance. If I’m tired, anxious or focused on something else, I may not know who you are even if I see you several times a week. Some people have it much worse than I do and need their spouse to wear a big hat or something to the supermarket in case they get separated.

The other thing is The Joy. The Joy hasn’t always been pens. It has been pens since autumn 2016. I imagine it’ll be pens for a good few years more, but perhaps the day will come when it’ll be something else. I am phrasing it this way because the dismissive neurotypical approach refers to “abnormal attachment to inanimate objects” and “stereotyped, rigid interests” as though we’re stuck in some kind of miserable trance, unable to escape. So consider. Have you ever looked at something: a class of things, perhaps, and been utterly blown away by how fascinating it is? Have you had an interest that utterly consumes you with delight? The world is so surprising and complex. Getting to know one small corner of that, opening it up and looking at each detail, is a wonder. There are stories, like the one about our man Gerald. There’s design and engineering. There’s a kind of evolutionary tree of where everything comes from. And the sensory inputs of colours and textures, and light on paper. I use those writing instruments which are designed purely in order to turn writing into a delight.

For some people, that delight is lizards, or walking sticks of the 1890s, or railway timetables, or every episode of some obscure anime series I’ve not heard of. And all of these are good little corners to light up. Everybody gets a corner. Everybody gets The Joy. You’d have to be a sad, unimaginative sod to regard that as a deficit.

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