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

by Bianca Toeps

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.

‘The Sally–Anne test: an interactional analysis of a dyadic assessment.’ International Journal of Language & Communication Disorders, 51: 685-702, 2016. DOI:10.1111/1460-6984.12240

the old Dutch saying of ‘calmness, cleanliness and consistency’

Markram, K. en 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.

Nothing hurt me more as a child than being punished while I thought I was doing the right thing.

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,

I think stims put certain parts of the brain to work so that other, unpleasant stimuli can also be cleared away.

actions where one part of the brain is stimulated in order to better process impulses from another sensory organ.

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.

Filtering issues.

Imagine your own senses, multiplied by ten. A passing shopping trolley sounds like a low-flying fighter jet, a little breeze feels like an icy hand in your neck. 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.

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.

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.

I scored extremely high on the IQ test, but pretty poorly on the stress resistance test. That really stressed me out,

Anckarsäter, H., Hofvander, B., Billstedt, E., Gillberg, I., Gillberg, C., Wentz, E., & Råstam, M. (2012). The sociocommunicative deficit subgroup in anorexia nervosa: Autism spectrum disorders and neurocognition in a community-based, longitudinal study. Psychological Medicine, 42(9), 1957-1967. DOI: 10.1017/S0033291711002881

It seemed to confirm the feeling I’ve had deep down all along; that our world consists of a collection of veneers that peel away in places, allowing us to peek underneath the surface.

I see plenty of people complaining on social media about how “everybody gets a label nowadays”, I can guarantee you it’s easier to walk from one end of Scotland to the other without encountering rain.

Right now, autism is diagnosed in men four times as often as in women. This difference used to be even bigger. I was always told this is because women are better at camouflaging and I believed it, until I read Anna’s thesis. Are women better at camouflaging, or do they face more severe consequences if they don’t?

It seems that women and people of colour feel forced to mask their autistic traits, due to a lack of diagnosis and out of fear for the consequences of being different.

Hooge, Anna N. de, ‘Binary Boys: Autism, Aspie Supremacy and Post/Humanist Normativity’, Disability Studies Quarterly, 39:1, 2019. DOI: 10.18061/dsq.v39i1.6461

When I came home, I’d immediately lock myself in my room with the lights turned off and my laptop on. Destimulation is what I would call it looking back.

Most undiagnosed autistics keep pushing – and crossing – their own boundaries.

“I don’t have plans, I have options.”

I find a plan that goes off the rails far more stressful than no plan at all.

Do you want this therapy for you, or for your child?

Are you looking for ways to prevent your child from experiencing sensory overload, or are you trying to teach your child how to endure it?

Ask yourself this: does this form of therapy take away any form of agency from my child?

do you teach your child how to swim by refusing to let them get out of the pool?

By trying to change your child into someone else, you rob them of a very valuable sense: intuition.

external rewards will diminish internal motivation, making your child actually less likely to learn or do something on their own.

Kupferstein, H. (2018). Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis. Advances in Autism, 4(1), 19–29. DOI: 10.1108/AIA-08-2017-0016

Ulber J, Hamann K, Tomasello M. Extrinsic Rewards Diminish Costly Sharing in 3-Year-Olds. Child Dev. 2016;87(4):1192-1203. DOI: 10.1111/cdev.12534

most non-autistic-looking autistics tend to be the people who experience the highest psychological pressure. Their brain is running non-stop on full capacity, their self-monitoring is so internalised the system can’t actually be turned off anymore. A constant flow of information (at best) or heartless self-criticism (at worst) leaves the owner of this brain overworked, burnt-out and depressed.

It can be useful to know the reason why, but that’s about all a diagnosis will give you. Well, perhaps a slight reduction in self-hatred, because you used to think you were just a total loser who needed to quit whining.

The goal of the “label” isn’t to make us feel oh-so special. The label is a diagnosis that finally puts a name to what we always knew was there. So that we can move on.

They just happen to be a minority who live in a world that’s geared towards people with a stronger filter for stimuli.