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

by Bianca Toeps

The one thing which, to me and many others, is the most important aspect of our autism: hypo- and/or hypersensitivity to stimuli. It’s the essence of the Intense World Theory and, in my opinion (and that of the Markrams), also the source of all additional problems.

Stimuli are the signals we receive mainly through the five senses, even though humans actually have more than five. And then there’s the stimuli that come from your brain itself: thoughts.

Clothes are a challenge as well. Pants can’t be too tight around my stomach, unless they’re leggings with a broad elastic waistband of about eight centimetres or more – those are super comfy.

I can’t handle certain fabrics because they prevent my body from regulating its temperature. I get cold and hot at the same time as if I have a fever.

Touch can be just as intense in a positive way.

But if I’m not in the mood, being touched is the most horrible thing in the world. So anybody who literally wants to give me a little push, as in “go on, your turn”, or who puts an unexpected hand on my shoulder, can expect an imaginary punch.

I can get really angry when my hearing gets overstimulated.

Due to their hypersensitivity to smells and flavours, a lot of autistic people struggle with eating. I too have had issues with food, even to the point of an eating disorder. And although I can be stimulated in a positive way by pleasant textures (marshmallows! liquorice!), I think my eating disorder mainly had to do with planning, choices and control.

retain unnecessary tension.

Both in my shoulders and while holding things like my favorite of writing. Gorilla grip

It’s a bad posture, head forward, knees back and shoulders that are way too tense. The muscle tension throughout the whole body is very high, which makes these autistics look as if they’re playing one of those zigzag games where you have to move a metal stick with a ring at the end along a wire without touching it. If you fail, you hear a ridiculously loud buzzer, get the fright of your life and don’t win a hundred thousand dollars. In my teens and twenties, I was that tense a lot of the time. My raised shoulders, shallow breathing and squinted eyes were a perfect recipe for headaches, which put me out of action for days.

I had to get over the airy-fairy image, but consciously working with muscles and poses has enhanced my life significantly. I’m now quicker to notice when my muscles tense up.

By consciously focussing on the balancing exercise, other parts of your brain start to calm down. After a while you get that “Psssht… Aaaaah!” sensation, like when you’re opening a fresh bottle of Coke and release the pressure.

By the way, did you know that the sound you hear when opening a bottle of Coke has been engineered? I bet those sound designers who worked hours to create the perfect psssht sound were at least bordering on autistic.

Imagine your own senses, multiplied by ten.

Tight clothing becomes a metal harness you can’t move around in and sunlight through the trees hits you like the flashing of a stroboscope you accidentally looked straight into.

I know autistics sometimes come across as terrible whiners. Drama queens. Crybabies. Even I think that sometimes, when another autistic complains about something that doesn’t happen to affect me personally. But autistics aren’t crybabies. They are people trapped in a world at volume 10. So close that window, turn down that music, and please don’t force your child to wear itchy or polyester clothes. Give up that battle. Autistics will never ‘learn to cope with it’. The only thing they will learn is to ignore their own body’s signals. And that can be incredibly harmful.

“I have to get out of the loop. I have to get out of the loop.” The sentence keeps repeating in my head, ironically turning into a loop itself. An hour ago I was at home, sitting on the white Malm cabinet that contains my clothes. I had gotten dressed, so that was a start. But after that I sat on that Malm cabinet, staring into space for minutes. “Go and do something, Toeps. Go outside. That always helps.”

DAILY

I felt overwhelmed by stimuli from within: thoughts. Thoughts that raced around my head like Formula 1 cars, lap after lap. Usually something like this happens the day after a busy workday with lots of communication. I’m tired, I’d love to just go to sleep, but at the same time my head just keeps racing. There’s a schedule with a thousand things to be done and I’m way too hyper to go to sleep. But I’m tired. But I have things to do. But I’m tired. I get into a spiral I barely manage to get out of. Sometimes I grab my phone, only to conclude after a quick glance at Twitter that nothing new has happened in the past thirty seconds. Then the cycle starts again. I have things to do. But I’m tired.

I must have written this

anti-loop-techniques. What works almost without fail is a change of scenery.

While writing this piece, it occurred to me I have gotten stuck in the loop a lot less over the past few months. My quieter, more flexible planning (more on this in part 5 of this book), my stable relationship with Riemer and my reliable emergency scenarios have given me a calmer state of mind than ever before.

So just have to get adjusted and accomodated at the new job then we will be good to go?

TIP: TAKE CHARGE Is an autistic you know stuck inside their own head? Maybe they don’t mind if you take charge for a minute.

it’s important not to burden the autistic with difficult questions or decisions. And definitely don’t force anyone; to someone who is also auditorily overstimulated, Ikea would probably be the last place they’d want to go. I, on the other hand, usually love to go there.

When someone else is in charge, my head gets to take a well-earned break. My ex Mark would usually put on a TV interview or a documentary. If you’d asked me if I wanted to watch it, I’d have said no. But because he was watching, I’d start to get curious. And it didn’t matter if the topic didn’t actually interest me. It wasn’t my decision. And that was wonderful.

!!!

Some autistics, for example, barely seem to feel pain or cold, ignore the urge to pee to the point of it resulting in a bladder infection, or forget to eat or drink for a whole day.

Hello

When I work from home, I often find it difficult to switch. “Just this bit of code…” my brain mutters, after which three hours have suddenly passed. What helps in such cases is a schedule for the day with set breaks, setting an alarm clock, or using a refillable water bottle that’s always within reach.

I personally see it differently: I think they are ways to deal with overstimulation. That may not seem logical, but if you think back to the Tetris analogy from before: the stimuli caused by stims, physical sensations or crowded places seem to activate a clean-up system that, while processing these self-chosen stimuli, also clears away the unpleasant stimuli.

People who have trouble with their executive functions struggle with dividing large tasks into smaller subtasks, separating important things from minor details and breaking patterns.

You might have noticed how remarkable it is that some brilliant autistics aren’t able to cook, eat on time or keep their houses tidy. Other autistics stick to the rules of the systems they have created for themselves so strictly, that even the smallest change can really upset them. They’re two sides to the same problem: trouble with executive functions.

The order of the vacuum plus laundry plus shower without "blockers" equals two hours of writing out the hours and steps and time loss and nothing gets done and then enters guilt

I was aware of the problem and I also knew what I needed to do to solve it: just start cleaning up! But the thought of ‘just cleaning up’ alone was enough to make my head explode.

Before my executive functions start to jam, a stream of thoughts and stimuli is set in motion that no amount of filtering can remedy. You could compare it to one of those machines that shoots out tennis balls, except that it’s set to Serena Williams while I’m here having my first tennis lesson. With every tennis ball that zooms past me, the adrenaline rises. That’s how it works when someone with autism wants to tidy up. “This has to go into the closet!” “But the closet still needs an extra shelf!” “I should go get one at Ikea first!” “Oh look, a dentist bill!” “Better go and pay that first…” Meanwhile sensory stimuli are all over the place, because there’s clutter everywhere and everything feels unpleasant. Especially tasks like laundry or dishes – tasks that will get your hands wet or dirty – are tricky. The tornado of stimuli, or the mere prospect of it, can be so severe that the autistic person decides to do nothing – exactly like the Intense World Theory predicts. Dishes? Nope. Tidying? Nope. In my head, I see myself as a small child, covering my ears with my hands, shouting and stomping my feet. Nope, nope, nope! Brain overload.

Dead bug

where a souped-up engine overheats, my brain becomes exhausted and I get a headache. The next few days I get nothing done, unless I give myself an even bigger adrenaline boost. If you’re not careful, this will lead to a downward spiral that eventually ends in panic attacks and symptoms of depression.

TIP: ELIMINATING BLOCKAGES Do you ever think autistics are lazy and just need a kick up the arse? Chances are the person you’re complaining about has trouble with their executive functions. To help them, you could set up a step-by-step plan. You could also try to find out what a possible blockage is about, and then offer to clear it away. For me it often is a huge ordeal to leave the house: I have to put on my shoes and jacket (stimuli!), it’s cold (more stimuli!)… If this doesn’t bother you as much as it does me, you could offer to go get me that one thing so I could just get on with my day. I know some people will struggle with this because they feel like they’re being used by a lazy autistic. And there are some lazy autistics out there, no doubt. But if you know which executive problems someone faces, you can take that into consideration.

symptoms are present from childhood, but it’s entirely possible they don’t manifest until the challenges in your life exceed your capacities and coping skills. This is also referred to as the autistic burn-out: someone who was previously able to speak in coherent sentences, suddenly can’t utter a single word or bursts into tears at the slightest change. It’s the result of years of asking too much, of hiding and of “acting normal”. The person in question shuts down and seems to become more autistic. But that’s not the case: The person was always this autistic, they just ran out of energy to hide it.

It’s the biggest danger in “high-functioning” autism. I use those quotes for a reason, because it’s a subjective evaluation and all is not what it seems. Usually the person who seems to be functioning just fine, the one who appears to be doing well in society, is fighting to just keep their head above water.

torture and that I’d fail to get any real results. I will never feel comfortable looking people in the eye, for example. I still find that difficult. And the fact that I may do it more now, only means that on a daily basis, I spend more energy.

Autistics who get better at learning how to “act normal” only end up spending more and more energy doing so. They get a normal job, yay, but in that job they have to keep up that act non-stop. They start a family, but constantly feel out of their depth. Three-two-one… Autistic burn-out.

always thought I was just weak. A quitter. I quit three different studies, I had extreme difficulty looking after myself… And I didn’t get it.

When I was diagnosed with autism, at first I thought I was going to learn how to cope with all my sensory overload.

that turned out not to be the case, I went through a mini mourning process. I now know how to avoid an autistic burn-out, but I still keep hitting my own limits – it’s just that they always seem to be a bit closer than I’d hoped.

The fucking mourning process. Flaring now, I feel less able and more autistic.

keyboard heroes declaring on social media that “everyone’s a little autistic” – nope.

People with autism will miss days at work or have trouble with relationships, friends and family. They can’t keep up in school because thirty kids with clicking pens and smelly deodorant drive them up the walls. They get kicked off the sports team because, according to them, something happened that wasn’t in line with the rules (which was probably true, but the autistic in question just couldn’t let it go). People who arrange their shoes by colour aren’t “a little autistic”, they’re just shoe freaks.

It’s only autism if it isn’t anything else. Right.

know I used to hate certain socks,

My mother told me I taught myself how to read and that I’d get mad if the subtitles on TV were going too fast.

feeling utterly misunderstood. “You’re in your first year, so you can’t write yet…” the teacher said one day. “I can write!” I shouted. “Not the way you’re supposed to”, the teacher said, “so you’ll all get this printed label to stick onto the books you made.” I was angry. Felt hurt, not seen. I didn’t feel like doing any of it anymore.

every time I reluctantly returned to my dad because I felt I would hurt him terribly by moving away permanently. My mother always let me make up my own mind. Thinking back to it, my heart aches. Of course she would have loved for me to stay with her. But somehow I knew: my mother can handle it if I leave. My father can’t.

Swap them

It had been used before as a threat, just like the ‘home for problem children’, but this time it wasn’t a threat; it was a solution. “She’s getting more and more withdrawn, I’m afraid she’s going to hurt herself”, my father said to my mother in a rare and serious phone conversation.

Unfortunately on point

I stayed home because I simply couldn’t cope anymore at school. The bullying, the feeling of not being accepted, the constant adjusting and masking… I was tired, dead tired. On top of that I was working after school. At first at the local supermarket, then at a fast food joint. Jobs that weren’t suitable for me at all, but my mother thought it was a good idea – it would make me more sociable.

The begging to stay home to homeschool myself in high school lmao

I’d usually head to work shaking with anxiety, even though it was only for a few hours. The supermarket was the worst: I went to work, hoping that nobody would ask me anything

Candy motivated me, but it had two huge downsides: 1) it makes you fat, and 2) it makes you sick. And if you start skipping meals because you don’t want to get fat, you get even sicker.