On special interests

First of all, apologies for previously having hit ‘Publish’ before actually adding any text. I am currently making blog posts on my phone, so put it down to small keys, stubby fingers and a touch screen that is a little too responsive at times.

This is a conversation I had with someone over Instagram. As you can see, I got quite enthusiastic about describing the Discworld books Thief of Time and Night Watch. I could definitely have gone on a lot longer than I did, and in the past I have done so when talking about things I am passionate about – although I was shamed out of it quite early on and so now I am wary of over-explaining.

‘Special interests’ are one of the hallmarks of Asperger’s-type autism. During the assessment which led to my diagnosis, I regaled the assessor with information about the development of Japanese martial arts, particularly the style now called ninjutsu, and also talked at length about Discworld, including citing some of my favourite quotes. Not surprisingly, I scored highly in the ‘narrow and circumscribed interests’ section (in all the sections, come to that). This was one of the few times in recent memory that I have felt comfortable really letting go in this way, probably because I was supposed to show how autistic I was for once rather than trying to pass for a Codie, making shallow chit-chat (shit-chat?) about the weather and whatever the hell else they fill up silences with.

There is, I understand, some disagreement within the autistic community about the term ‘special interests’. Some like it, and others think it’s infantilizing, patronising, or that it pathologises what would simply be called ‘interests’ for neurotypicals. Personally, I like the phrase and use it for myself, because – well, my interests are special, or at least the intensity of them is.

Discworld is my main one. I was introduced to the series at age sixteen (back in the Bronze Age, lol) and I have been an avid fan ever since. I will make another post soon, dedicated to my love of the pancake-shaped planet that rides through space on the back of a giant turtle and four giant elephants, and how it has shaped my life and my world view. If I do it here, I will forget that I meant to talk about special interests as a general subject, and this whole post will get out of control.

So, anyway – Discworld is my number one thing in the world. I am also fascinated with the Black Death, the Spanish flu epidemic of 1918, psychopathology, cult recruiting techniques, urban legends (particularly the one about the fictional video game Polybius), the Goth subculture, vitamins, properties of plants, supernatural phenomena (although I can scare myself reading about these if I’m not careful), nomadic lifestyles…and a variety of subjects that flit in and out of my field of awareness. My current Wikipedia tabs for later reading include the pages on pond snails, the High Middle Ages and death rock, amongst others. And I am developing a love of the Pok√©mon franchise, too, thanks to my son, who is all about them ‘mons.

So, as you can see, it’s not always mathematics and machinery. An autistic person’s special interests can go in any direction, and those of us who are preoccupied with socially acceptable and/or non-stereotypical things may well fly under the radar of otherwise fairly savvy teachers, doctors and caregivers.

It’s also not unusual for our pet topics to change, sometimes quite rapidly, so that our autism can look like ADHD (a previous diagnosis of mine). I’ve found that if something is a past special interest that I then moved on from, it’s very difficult to make myself get back into it at a later date. I’m either utterly absorbed or I don’t give a shit. There’s no in-between.

I would like to see a world where, instead of asking someone new what they do for a living, we ask them what they’re interested in. In my opinion, that tells you far more about them and would make for much more engaging conversations for everybody.

Monks and metaphorical balls

I found this meme on Instagram today, shared by myaspieworld. (The original art is by the author of Hyperbole and a Half, which you should definitely open in another tab and check out if you haven’t already.)

Mental preparation is a big part of being able to Do The Things for autistic people. I like to imagine we would probably make excellent Marines. Or Shaolin monks. We’ve already got that level of psychological discipline, and we use it for everything from getting up and dressed in the morning to negotiating complex business transactions, for those of us who do that kind of thing.

So if we flake on you, or are late or make seemingly silly errors…well, we might just be lazy and careless because those are traits anyone can have, but equally we might have neglected to plan some minutia or other and dropped the ball (metaphor alert). Or we may have run out of spoons. We want fun and adventure too – we just need to make sure that we can have them safely and with the minimum of burnout afterwards.

Autism and chronic fatigue

Here’s where I talk more about being exhausted. Not ‘I’ve had a busy day and am looking forward to my bed’ weary. But ‘feel like I’ve been put through a mangle’, ‘so tired I could cry’, ‘down to the atomic level’ absolutely fucking knackered.

Fellow autistic blogger Gwendolyn Kansen wrote a fantastic post about how much of a struggle it is for us to keep employment (a subject I will address in my own words at some point). And yes, going out to work is one of the most tiring things an autistic person can do on a daily basis. I have been signed off work for about five years now, however, and although I don’t have nearly as many meltdowns and stress-induced physical ailments as I had before, I still need to spend most of my time resting and recovering from my interactions with the world and particularly the people therein.

You see, all the little everyday things require detailed planning and conscious effort. It’s like sitting a final exam all the damn time. Only quite often, questions come up that I am pretty sure have nothing to do with what was on the syllabus.

This morning, for example, I had a parcel delivered. I have the delivery firm’s app, so I was able to know more or less exactly when the driver would be here. But that still meant sitting and waiting, preparing myself for greeting him and taking the package without dropping it and signing the handheld electronic wossname and saying goodbye. And then, when he arrived, he didn’t knock on the door to the building as I expected him to, but came right in (because my neighbour had left the door open). I rushed to my front door, called him back because he had walked past the door to my flat, and then did the signing etc at my door instead of the main door.

I was also accosted by someone official-looking (not a copper) who had come to the door looking for one of my neighbours, saying that she had a warrant (!). However, none of our flats have numbers on the doors and I didn’t know the person she was looking for by name, and she seemed very impatient and…let’s just say I was in dire need of a cigarette afterwards.

As a result of the parcel delivery going differently to how I expected it to, and the unexpected peopling due to Warrant Woman, I am now back in bed and will almost certainly have to have a nap soon. These kinds of interactions, for a neurotypical and otherwise non-disabled person, are part of the background of the day. For me and many others, they are events that need psyching ourselves up for. And if things deviate, if more energy than we bargained for is unexpectedly required, we have to borrow some from our future selves – and we pay that back at punitive interest, one way or another.

Back when I was working, I often repaid the debt by calling in sick, or being late because I needed a lie-in if I was going to make it in that day. If I managed to avoid both, I would come home and crash out immediately. (In fact, I fell asleep at work once, which was pretty embarrassing and didn’t go down at all well with the person I was working with.) If for whatever reason I wasn’t able to rest after work – because I had chores to do or somewhere else to be – I was on a (metaphorical) fast train to Meltdown City. And since nobody knew I was autistic back then, everybody (myself included) put it down to me being neurotic, high-maintenance, looking for attention, lazy, etc.

Now that I am living a life of leisure (ha! I wish), I don’t have that strain on my intangible resources. But also, I don’t have any help. With anything. I live alone, and although I had a support worker for a while I now no longer do. I am estranged from my family of origin, I don’t have a partner, and most of my friends don’t live anywhere near me (and have their own disabilities to manage). So I am usually alone, which I like, but I also run my household by myself without support, which means that everything – every chore done, prescription collected, food shop shopped for, bill paid, appointment attended, phone call made – is down to me and only me.

At least when I lived with a partner I could share the load. Being in a live-in relationship is even more of an energy drain, though, and even interacting with carers and the like requires conscious effort that extracts its price, so really I am in the best set of circumstances possible right now.

So you can see why autism and chronic fatigue (not necessarily CFS/ME) often go hand in hand. We’re constantly going against our natural neurology in order to get basic shit done that the Codies take for granted.

Wherein I talk about not knowing what to talk about

What does one even write in a first blog post?

Seriously. I have so much to say about living life as an autistic person in a world designed for those who people – yes, I’m using that as a verb – without conscious effort. (Norms. Allistics. Neurotypicals. Or, as I like to call them, Codies. Because they all talk in code ALL THE DAMN TIME.) But beginnings are hard. And while I think of myself as a writer, I haven’t actually written anything beyond a shopping list in far too long.

So, yeah. I’m out of practise at this writing thing, and I have too much to say to actually say anything specific. It’s like when you zoom out on Google Earth and the whole planet (or, rather, a graphical representation thereof) is just sitting there waiting for you to decide whether you’re going to visit Machu Picchu or the house you lived in as a kid. Only you’re zoomed out so far you can’t actually see either. You can see everything, but you can’t see anything.

So much for autistics not being able to use metaphors, huh? (OK, technically it was a simile.) I am going to aim to post twice a week, on a Monday and a Friday, and I’ll be sharing bits of my daily life that I think might have relevance for other autistic people. I hope some of what I write will resonate with you.