But You Don’t Look Autistic at All (Bianca Toeps’ Books)

by Bianca Toeps

Before you think I’m an obsessed K3 fan and that that was the reason I burst into tears: it wasn’t. It was the childrens’ emotions as they were suddenly surprised by their idols. It was the music. It was the whole picture that was so overwhelming it suddenly made me emotional. Mark already knew me quite well by then, but I found it quite embarrassing myself. I hunched over my pizza, pulled my cap a little further down and pretended everything was fine.

We close ourselves off to stimuli, and then get blamed for not having any empathy.

As an autistic, I often feel forced to code-switch, to switch between two different types of behaviour: my own and that which is socially desirable.

social reality is a construct, a set of rules that the players determine together.

Children with autism are often taught not to trust their own feelings, so I’m not surprised they say what the researcher appears to want to hear. The interpretation of the results is littered with neurotypical assumptions as well.

Insecure because the neurotypical behaviour has been so exhaustingly pounded into me, I sometimes honestly don’t know who I am

Milton, Damian E.M. ,‘On the ontological status of autism: the ‘double empathy problem’, Disability & Society, 27:6, 883-887, 2012. DOI: 10.1080/09687599.2012.710008

We have a different neurotype, a different way of processing information,

Their findings resonate with what a lot of autistic people actually already know: the autistic brain is hyperactive. According to the Markrams, more connections are being made in the autistic brain and brain cells respond more emphatically to each other. There’s a stronger response to stimuli, thoughts run rampant quicker. In short: the world is extremely intense for autistics.

That doesn’t just explain autistic people’s hypersensitivity, but also their apparent insensitivity and limitations in social communication. We close up in the overwhelming storm of stimuli, like a computer that freezes when you give it ten different tasks at the same time. Then our hyper-fanatic brains make sure we remember that scary, nasty experience very well and will try to avoid it in the future.

“The intense world that the autistic person faces could also easily become aversive if the amygdala and related emotional areas are significantly affected with local hyper-functionality. The lack of social interaction in autism may therefore not be because of deficits in the ability to process social and emotional cues, but because a sub-set of cues are overly intense, compulsively attended to, excessively processed and remembered with frightening clarity and intensity. Typical autistic symptoms, such as averted eye gaze, social withdrawal, and lack of communication, may be explained by an initial over-awareness of sensory and social fragments of the environment, which may be so intense, that avoidance is the only refuge.”

Autistics tend to have a very good eye for detail and a knack for logic. Where neurotypical brains usually choose the well-trodden paths (which are quicker, but as such more prone to generalizations and preconceptions), autistic brains explore every little side street and country road.

For this reason a relatively large number of autistics work in science and IT, among colleagues who may not be autistic, but do possess a lot of the same traits.

Instead of showering autistics with stimuli so they ‘learn how to deal with it’ or drilling them like soldiers, they argue for a calm, predictable environment for autistic children, so they are less likely to close up or develop anxieties. This way they can develop the positive aspects of their amped-up brain.

“Behavioural treatment according to the Intense World Theory is proposed to focus on filtering the extremes in the intensity of all sensory and emotional exposure as well as relaxation and progressive systematic desensitization to stimuli presentation. The probably most counter-intuitive suggestion that emerges from the Intense World Theory is to surround the child with a highly predictable and calm environment protected from abrupt sensory and emotional transients and surprises for the first years of life to prevent excessive sensory and emotion driven brain development.”

Markram, K. and Markram, H., ‘The Intense World Theory – A Unifying Theory of the Neurobiology of Autism’, Frontiers in Human Neuroscience, 4, 2010. DOI: 10.3389/fnhum.2010.00224.

As a child I wasn’t able to deal with these dimensions at all, but I’ve learnt to through trial and error. There’s a constant alarm going off inside my head, though. “IS EVERYTHING ALRIGHT?!” my brain shouts every ten seconds

I’m trying to monitor if she’s still having a good time with me, if I’m talking too much, or not enough. The alarm bells are working overtime and apparently it shows, because then it’s actually Kei who asks me if everything is alright. “Yeah, yeah, fine!” I respond without thinking. “If you’re not okay just wait outside. I’ll quickly get what I need and I’ll meet you there right after!” I tell her that’s not necessary while feeling quite annoyed with myself. Although I told her about my autism, the fact that she can tell feels like failing.

Every break I was sitting there staring at my sandwich; it was as if I kept ending up in the wrong place, in between two conversations. My alarm bells were going off non-stop: “Say something! Ask something!” But what are you supposed to ask? Often when I tried to contribute to the conversation, I couldn’t get a word in edgewise. When there finally was a pause in the conversation, the subject had already changed three times.

Maybe they were just as unable to involve me as I was to get myself involved.

When overstimulated, my boyfriend Riemer struggles to recognise questions that don’t actually end in a question mark. I’m sometimes left waiting for an answer for several minutes after a sentence that ended in “…if that’s okay with you.” That’s not a question, according to Riemer.

If you notice I’m having a hard time getting the words out, you could also decide to tell something yourself. If someone else takes the lead, my hyper-alert brain can get some rest.

“Look at me when I’m talking to you!” my stepmother would say sternly. It felt as if her eyes were cutting through me like laser beams, like in a superhero movie or a cartoon. I’d fight my reflexes, reflexes that’d keep moving my head to the side and my eyes toward the ground. I’d force my chin up and squint my eyes until they were no more than slits. I no longer heard the words that came out of her mouth. They moved past me like smoke circles that slowly but surely transformed into wisps whose original shape you could no longer discern. Until I was startled by the next reprimand: “Don’t give me that arrogant look!” I didn’t even know what arrogant meant. I just wanted to show that I was listening.

Brain scans show that in autistics, heightened activity can be measured in their emotional circuits when they’re shown pictures of eyes or faces.8 So making eye contact actually is more intense for them.

I promised myself I’d mind that better in the future. I looked so… autistic.

The last few years I have a little scene ready that I act out. “Sorry, super busy, I have a lot on my mind, you know what it’s like!” I play the chaotic business woman, a more widely accepted persona than the evasive autistic. As soon as the person in front of me has told me their name,

“Do you want me to listen, or do you want me to pretend I’m listening?” Your message usually comes across better if the autistic in question doesn’t look you in the eye.

If you’re a parent or a teacher and you want to discipline a child, try to keep listening while you’re lecturing. Why did the autistic child do that thing you’re angry about? Maybe he or she had a good reason. Nothing hurt me more as a child than being punished while I thought I was doing the right thing.

Or is it perhaps the polite, but insincere behaviour of neurotypicals that we struggle with? Isn’t it actually very strange to lie when someone asks what you think of their new shoes, or to keep acting nice to someone you really can’t stand? Although some adaptability can be a useful social lubricant, I think that if you adapt too easily, you aren’t true to yourself.

Just like her, I have a very low tolerance for bullshit.

hands. Two people then touched the little ball, which closed the circle. A light went on. “Wow!” my fellow yoga students exclaimed. I didn’t say anything, but in my head I was screaming, “We’re just connecting a negative and a positive here, this is first-grade physics!” You can’t say things like that. Well, you can, but people won’t like it. They will assume you think you’re better than them, they will say you’re arrogant. But putting my opinions aside, nodding along, smiling and keeping my mouth shut makes me feel uncomfortable, empty and angry. It sets off too many error alerts in my head, so I try to avoid such situations.

To everyone who feels they have to pretend to be something they’re not and who is constantly afraid to step on people’s toes I’d like to give this piece of advice: find better friends. You deserve it.

line up my stuff unnecessarily.

Pens, desk stuff, anything on a horizontal surface :…)

delayed palilalia, repeating yourself hours after the conversation has passed.

This usually happens while I’m doing the washing up or during another routine task. It’s as if my head goes over all conversations that took place, re-examining them, and then emphasizing the little social cues (“Oh, yeah! No, sure! Cool!”). Out loud.

Such things can be ‘stims’, things that soothe an autistic. I think stims put certain parts of the brain to work so that other, unpleasant stimuli can also be cleared away.

you’ll recognise stimming in a lot of neurotypical behaviours. Wiggling your legs, shaking your head or blinking when you see or hear something strange, making ‘hmmm’ sounds while eating, and even dancing – they’re all actions where one part of the brain is stimulated in order to better process impulses from another sensory organ.

TIP Question: What should I do when an autistic is stimming? Answer: Nothing. Let them. Unless the autistic is hurting themselves or others, of course. In that case, try to direct the autistic towards another, less dangerous stim.

I too get agitated and stressed if I don’t know what’s going to happen, but especially when things are expected of me at the same time.

At some point it reaches a stage where I’m so hungry, I can’t properly express what I want anymore – something I want to avoid at all cost.

When I’m travelling with someone else and I have the feeling I can’t stop when I’m in danger of getting overstimulated, I get stressed.

Ironically, they tend to interpret the need for structure a bit too literally, and they think everybody benefits from a daily schedule that’s been planned to the max.

The notion that people with autism might experience more stress due to a day that’s been planned down to the hour (because the more that’s been planned, the more that can go wrong) is lost on them.

Luckily, I am not just used to events but also to overeager PR ladies, so I had already blocked out the next day for photo selection and postproduction. But had I wanted to rest that next day, or had I already scheduled other work, my stress levels would have gone through the roof. Making such a last-minute request is exactly what you shouldn’t do to autistics.

But I knew what to expect, and that makes all the difference.

Experts think predictability is a factor. Most autistic people’s hobbies can be categorised or are logical or predictable.

Computers do what you tell them to do. (And if they don’t, that’s usually because you – or the software developer – made a mistake. A computer can’t just go and decide to do something wrong because it doesn’t like you, no matter how many people say it can.) Stamps can go into an album, bicycle race results can be compared. And sorting, categorising and calculating simply makes most autistics very happy.

I think the sense of happiness that autistics experience when they’re immersed in their hobbies stems from the hyperactive circuits the Markrams talk about in their Intense World Theory. The stres...

I can really get very excited about logic, good design or proverbial puzzle pieces falling into place. Positive stimuli, I call them. They ‘click’ in my head, thereby erasing other stimuli. The accompanying feeling reminds me of Tetris: the moment your blocks create a l...

With some nice stimuli up ahead, we can overcome a lot of...