“If you’ve met one autistic person, you’ve met one autistic person.”An autistic person.
I would like to explore some of the colours of the autism spectrum and how they ‘look on me’, their awesome and agonising effects, and specifically, how I tend to hide them, hoping that it might resonate with those in a similar situation while making others think twice before judging the people around them. This list is highly subjective, anything but comprehensive, and not limited to official diagnostic criteria. I’m in no way trying to represent or downplay anyone else’s experience, just sharing my own. I’m usually a private person, so this is as much as you’ll ever get to know about me.
Social skills and awareness: A bull in a china shop or a cat in a dog’s world?
Autistic people often communicate differently and autistic culture follows its own social rules. Especially when we communicate with non-autistics, we often struggle with picking up on social cues, interpreting and using facial expressions and gestures, making and holding eye contact, and understanding social structures and hierarchies. While many autistics are happily coupled up or enjoy a rich social life, a lot of us often find it hard to build and maintain friendships and other close relationships, and in general, to fit in. Bullying is a ubiquitous problem at school and often continues in the workplace. An autistic person might feel like a bull in a china shop when they’re really just a cat in a dog’s world. We’re not rude or careless. We use different social cues, facial expressions, gestures, patterns of interaction, not lesser ones. I used to think that I was a weird, deficient kind of dog. But it turns out, I’m just a regular cat who is so good at mimicking the dogs that she made them and herself believe that she was one of them. Just a quirky dog, acceptably weird. Except, I’m a cat.
As the cliché goes, autistics are clueless when it comes to anything social, but I like to think that I have a deeper understanding of social interactions than most people because I had to study them, analyse each step, and emulate them. On a good day, I know how to charm people, make them laugh, make them feel comfortable, because I’ve actively studied neurotypical language and communication for the past 15 years. I have two university degrees related to how society and communication work. I can make eye contact, but if we’re not close I’ll always think about when to look at you and when to look away. It doesn’t come naturally to me. It’s hard work and work is draining.
It’s like being a proficient non-native speaker of ‘neurotypical’. Most of the time, I can pass as a native speaker, although I do speak with an autistic accent (the facial expressions I use, gestures, words, intonation). But sometimes, I make a mistake that a native speaker would never make. And because people think I’m a native, they assume that I did it on purpose and that there must be some malicious intent behind my blunder.
Literal thinking and directness: What on earth is a bull doing in a china shop?
Having a literal mind adds to the social problems often encountered by autistics. Many autistic people have a hard time understanding metaphorical language and reading between the lines. We like to be direct and honest. Clear and efficient. We don’t beat around the bush. We beat the bush in the face. Which is often perceived as blunt. And so the delicate social waltz becomes a mosh pit – which, to me, can be frightening or fun, depending on the situation. I love to joke around and make people laugh, I love to watch dark comedies and political cabaret, but if you throw a joke at me without warning, I’ll always assume you’re being serious. And few things are more awkward than people telling me a joke, staring me down with their expectation, waiting for my forced laugh. I get why it’s funny on an intellectual level, but I just don’t find traditional jokes funny. My sense of humour is built on my directness, self-irony, and a hint of audacity, pushing people’s sense of propriety a bit, because if people think I’m weird, I might as well have some fun.
I studied language and communication – first by binge-watching sitcoms, later more systematically at university – including intercultural communication, pragmatics, politeness theory, and literature. I only realised a few years back that this is not how others learn how to ‘human’, but hey, it worked for me. I love metaphors. Sometimes they’re the only way I can express myself. And ultimately, most of our language is comprised of dead metaphors. Let that sink in for a moment (yes ‘sink in’ is a metaphor, too!). I think the reason why I like them, is the fact that I’m more aware of them. If I hear a metaphor, it often falls apart into its literal components and I have to reconstruct it to understand it. If I hear ‘sink in’ I imagine quicksand. Maybe that’s one of the reasons why in this small 2014 study, autistic adults generated more creative metaphors than the control group.
Black-and-white thinking: To bull or not to bull?
A literal mind is often also a binary one. All or nothing. 0 or 1. There’s no reading between the lines if there’s only black or white. Such simplification can lead to inflexibility and catastrophising. It can also be the kind of radical thinking necessary to see things for what they really are, without all the nice socially constructed garnish, and to make no-bullshit decisions in extreme situations.
To me, it isn’t just about black-and-white thinking, but also about feeling. I feel things very strongly or not at all. 0% or 100%. I suffer from ’empathy meltdowns’. I can watch the news or hear about a sad story and find myself curled up, weeping until 3 am about the famine in Yemen. At other times, when people tell me about sad things that have happened to them or some pain they’re suffering from, I feel completely numb (which might be some sort of self-protection). Then I have to put on all the fake facial expressions and say all the memorised words and I feel like I’m a monster or robot for not feeling anything. I also catastrophise my own pain or suffering (everyone who’s ever googled ‘light headache’ knows what I’m talking about) – unless it’s life-threatening, in which case I’m completely calm.
Special interests and single-tasking: There are almost 1 billion cows in the world
I don’t know how many of them are bulls, but then again, this is not my special interest. It is often seen as one of the most enjoyable and precious aspects of being autistic. Autistic people become obsessed with their special interests and often become experts, spending thousands of hours immersed in their subject, from Adélie penguins to Proto-Indo-European, from coding to Harry Potter, from beanie babies to succulents. We can be single-minded single-taskers. We love deep talk. Please don’t talk to us about the weather, unless you are interested in the difference between cirrocumulus and altocumulus clouds.
I identify with my interests more than with my gender, nationality or social class. If you meet someone new, you will often ask them “What do you do?” or “Where are you from?”. I don’t care. I want to know what fascinates you. And if we have matching interests, be prepared to talk about them for at least an hour.
I don’t consider myself an expert in anything. But I love the manic itch I get when I discover a new interest, the feeling of delving into a new topic, devouring everything about it like a swarm of locusts, and moving on – or sticking around. When I was a child, I used to be obsessed with dinosaurs and penguins, astronomy and the climate, Pokémon and Sailor Moon. Later I turned to some more long-term interests like languages and linguistics, art and photography. I added shorter flings like Game of Thrones and Chernobyl, astrobiology and nuclear semiotics. Some special interests are life-long fascinations while others are intense fads. Most people seem to prefer social chit-chat to topic talk, or maybe they just think it’s what’s expected, so I don’t tell them about it. I don’t give lectures or ramble on about my topics. Unless you really fancy listening to a 30-minute presentation on why crows are the best animals. I usually just sit there, bored, waiting to go home and do something stimulating. Sure, maybe our colleague’s skirt doesn’t go with her blouse, but did you know that crows can recognise human faces, solve complex puzzles, and use tools? The world is a fascinating place. Let’s talk about it more often!
Sensory processing and meltdowns: When rush hour feels like a stampede
An ever-so-quietly ticking clock might drive me nuts, while I might be completely oblivious to the fire alarm that’s been going off for 5 minutes. The reason: hyperfocus. A lot of us can only focus on one thing at the time. I’ve never made a cup of tea and drunk it while it was still warm. But this can be a superpower. Ever since I was a teen, people have come to me with their cover letters, master theses and love letters (just kidding) for proof-reading. If you want something to be done with meticulous care, ask an autistic person.
The downside is, that whenever multitasking is required, we can get overwhelmed. Have you ever turned down the radio to see better while driving? Have you ever tried to get out of a shopping mall during the onset of a migraine attack, dodging hundreds of noisy people, shielding your eyes from the flickering fluorescent lights, pressing your overly fuzzy scarf against your nose to make it through the perfume section? Then you almost know what it’s like for some of us, every day. And if it’s too much, some of us have a meltdown, which might look like a ‘tantrum’ to the uninitiated.
This colour has become much more intense over the past couple of years. I can go to the supermarket, take the sardine express (aka the tram) to work, go to a Christmas party or a noisy café with friends. Luckily, I don’t have to rock back and forth in the corner with noise-cancelling headphones. But I will be consciously uncomfortable most of the time. Sometimes I get nauseated. I’ll get home and break down crying. I’ll have a migraine for 3 days. I’ll cancel last-minute or make excuses more often than not because I don’t know how to tell you that it’s just too much. Just think of me as having an iPhone battery. I can go from 100% charged to 75% if you open more than one tab in my browser.
Motor skills: Being all thumbs and fingers… and sleeves caught up in door handles
A lot of autistic people suffer from dyspraxia. Not all autistics do, and not all people with dyspraxia are autistic, but they seem to commonly go together. Children often show delays when it comes to rolling over, sitting, crawling, standing or taking their first steps, as well as speaking and toilet training, while some might skip some of those stages altogether. When I was little, I never learnt how to crawl – I went from scooting around on my bum straight to walking. Fine or gross motor skills can be affected. Someone might be able to draw portraits detailing every line in someone’s face while incapable of throwing a ball further than 30 cm. We often get picked last during PE. Trying to open one of those flimsy plastic bags in the fruit aisle is the bane of my existence. (Yet another reason to reduce plastic waste!) Being left-handed, I had to add tin-openers, wire-bound notebooks, most musical instruments, the Latin alphabet, and sewing classes to my list of enemies. I have absolutely no spatial awareness and I think I’m doing the world a favour by not learning how to drive. Although, maybe one day, I will learn how to drive. And how to dance. And how to change the duvet cover without having a mental breakdown. Some things just take me a bit longer.
Rigid routines and repetitive behaviour: If we were stuck in Groundhog Day, would we even notice?
How do you cope with 50 shades of between-the-lines, constant sensory overload that makes you feel like you’re trapped in a Disney World Parade at Shibuya Crossing, and a Schroedinger’s world without any certainties? It’s only understandable that a lot of autistic people seek refuge in rigid routines, rituals and repetitive behaviour. And is it really surprising if people react negatively if you’re trying to change their schedule and take away their life’s scaffolding? On the other hand, quite a few of us can be rather disorganised and messy. When our executive function.exe crashes, it can lead to problems with planning, problem-solving, procrastination, inhibition, attention, and memory, to name but a few.
I used to be the poster child of repetitive behaviour. ‘Playing kitchen’ meant that I would take a block of post-its and sit down for hours, drawing hundreds of doughnuts, always the same chocolate doughnuts, one on each sticky note – I was assembly-line-employee-of-the-month material. But nowadays, I hate repetitive tasks and I don’t know how to establish a healthy routine, although I would really benefit from one. I’m a procrastinating perfectionist who never learns from her mistakes and even cleaning my room can become a daunting task because of all the steps involved.
Another repetitive kind of behaviour is called stimming. I used to pace around in circles when I was trying to memorise information for school (because that’s how we rolled in the 90s), I’d sway left and right during presentations, and I’d feel the need to bang my head when in distress. I used to think there was something severely wrong with me, but stimming is actually normal and beneficial if it doesn’t involve self-harm. Sometimes I like to rock back and forth during meditation. Jews have been doing it during prayer for over a thousand years – it’s called shackling and is said to increase concentration and emotional intensity. It doesn’t mean that the Jewish religion or everybody who fidgets with a ballpen is ‘a little autistic’. It just means that what is good for autistic people, might be good for others, too.
These are just some of the colours and shades autism might come in. There might even be some ‘infrared’ or ‘ultraviolet’ traits that aren’t part of the autism spectrum (yet) or are just neighbouring colours. I’ve only recently been learning about the potential connection between autism and gender, autism and digestive problems, autism and issues with connective tissue, autism and demand avoidance. After all, the autism spectrum is only part of the whole electromagnetic spectrum of neurodiversity.
Why not tear off the mask and show your true colours?
I’ve been questioning myself a lot over the past one to two years. Masking has taken its toll. I hold two first-class honours degrees, yet I will stand at the tram stop for ten minutes, crying my eyes out (what a appropriately disgusting metaphor!) because it was too packed to get on. I was in the gifted programme at school, but I don’t know how to swim, ride a bike, or throw a ball, and I couldn’t tie my shoelaces until I was 10. I remember the exact speed of light, but I have no clue where I put my earphones.
I’ve dedicated half my life to learning how to behave like a neurotypical. It doesn’t mean that I’m a total conformist. One of my favourite pastimes is playing with and deconstructing social and linguistic norms. This sounds more pretentious than it (usually) is. It doesn’t take much really. For instance, just try not answering the question “Where are you from?” and watch people’s faces go ‘bluescreen’. But I’m not ‘out of the autism closet’. I worked hard to learn how to interact with neurotypicals, I’m proud of my own perseverance and resilience. But I’m also scared of being discriminated against on the job market, being treated differently by friends and colleagues, being looked down on or pitied. I have the deepest respect for everyone who is out and proud. I do feel I would benefit from a little help sometimes, but I’ve always been very independent. Mostly because I had to. Asking for any kind of support doesn’t come easily. I’m scared of depending on others and showing vulnerability. If only we could all cut each other some slack sometimes, regardless of the things we know about each other.
One thing, though, is certain: Hiding my autism has brought me close to mental breakdown and burn-out. This blog is a first attempt at becoming more visible and showing my true – sometimes awesome, sometimes agonising – autistic colours.
What do your autistic colours look like? I would love to hear about your experience in the comment section 🙂