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

by Bianca Toeps

All autistics I know recognise this. We close ourselves off to stimuli, and then get blamed for not having any empathy. For not understanding auntie Mary’s good intentions. But to what extent does auntie Mary understand us? To what extent does she accept that our way of processing stimuli is different from hers?

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.

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.

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.”5

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.

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. To what extent they succeed depends on the mental ability of the autistic in question. But it’s exhausting, no matter what.

Although it was useful to go over my weekly planning with her, I regularly had the feeling she underestimated me. She’d say things like: “Oh, you’re a photographer, how unpredictable! Isn’t that completely unsuitable for a person with autism?” I understand where she was coming from, but I think statements like that can be disastrous to autistics. Those who aren’t overly confident, in particular, might think: “Hmm, never mind, I won’t even try.” I’ve heard the same thing from several people, especially those who were diagnosed at a young age. On the one hand they’re happy they got diagnosed early on: “Otherwise it really would have been one big mess”, says Engelina, a girl in her twenties who was diagnosed at the age of five. “I was so different from the rest of the family, I thought I was adopted”, comments Liza (25), who was diagnosed with autism in her first year of primary school. On the other hand, there are the countless times they weren’t taken seriously, not even by expert teachers and care workers. Engelina: “They wanted to send me to a special needs school, despite the fact I had no trouble learning. According to mental health care workers I would never graduate or live on my own. I have been living independently for a while now, with only two hours of help per week.”

“The hardest ordeal for us is the idea that we are causing grief for other people. We can put up with our own hardships okay, but the thought that our lives are the source of other people’s unhappiness, that’s plain unbearable.”15

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And that’s what bothers me the most: if everyone thinks the label ‘autistic’ is too negative and starts coming up with more interesting names, people will only see autism in a more and more negative light. Because all those beautiful, sensitive, vulnerable and creative people, no, they are highly sensitive! It’s only angry teenagers and stupid ex-husbands who are autistic.

You can’t turn off real autism. You don’t choose it, and whoever tries to get over it, pays the price for it later.

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