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© 2020 Bianca Toeps

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This book is an adaptation of the original Dutch version Maar je ziet er helemaal niet autistisch uit, published by Blossom Books, 2019

Cover design and photography: Bianca Toeps

Cover hair and makeup: Charlotte van Beusekom

Graphic design text: Studio L.E.O.

Translation: Fay MacCorquodale-Smith, Translate This

Proofreading: Natasha Ziada

Final checks: Maria van Loosdrecht, Iris van Hal and Jorrit Bosma

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For interviews, speaking events or comments, reach out via info@butyoudontlookautisticatall.com

If I had a chance to go back in time

I’d tell the younger me to breathe

Cause you’ll be fine

Trust the path you’re on and dream

Write down the words on your mind

Maria Mena, ‘Interesting’

I would like to thank dad for his incredible bravery to work with me on this book. I would also like to thank Monique for letting me call her ‘stepmother’ in the interest of readability, even though she hates that word. I thank Riemer for his endless patience with me every time I was just done with writing. Thanks to Aafke for her encouragement and corrections, and for being my Big Example because she has written a book before. I would like to thank Blossom Books for their trust, because there’s nothing better than a publisher who gets you and sometimes just writes “hahaha!” in the corrections. Thanks to Charlotte for the beautiful makeup on my cover and author photos. Thanks to all the people who I interviewed for this book, or who gave me snippets through Twitter.

A very special thanks for the English edition goes out to these generous supporters: Sven Hilbrants, Aisha Sie, Paul Rispens, The Young Family, Sander Begeer, Mark Sleper, Renske & Andreas, Gwen Landes, Dimitar Nedev, Josephiene Westdorp, Quinte Marijnissen, Annette, Owen Stock, Karin Glaudemans, Fumiko Miura, Javier Miranda Perez and Mariko Horioka.

Intro: Invisibly different

You walk out of the aeroplane via the jet bridge. For the past ten hours, you’ve been sitting in a cramped seat, eating an undefinable meal and watching Kung Fu Panda because you didn’t have anything better to do anyway. You wanted to sleep, but thanks to the baby three seats down that was only a partial success. Now you’re here, on the other side of the world. Billboards are calling out incomprehensible messages and even the bathroom is something to behold with its thousands of buttons, bells and whistles. The musical note produces a noise that vaguely resembles cascading water and what you thought was the flush button turned out to be the setting to wash your bottom. A lukewarm trickle sprays upwards. Eeew.

Past customs you’re being picked up. You hold out your hand, but the person in front of you doesn’t take it. Instead, he bows. You try to make eye contact, but the man in uniform merely looks down. Just as you’re about to open the taxi door, it opens by itself. From the back seat you look out the window covered in stickers, past the blaring television screen at the back of the headrest of the seat in front of you.

There are neon billboards everywhere. “Nihon e yokoso!”, the driver says. Silence. The driver thinks for a second and then says, “Werukomu tsu Djapan!”

Within thirty minutes, you’ve probably broken dozens of social rules. You feel like an alien, like a bull in a proverbial china shop. You’re tired and overstimulated because of all the signals that are fired at you. Signals you don’t understand most of the time. Your saving grace: you’re a foreigner. You’re clearly not Japanese, so nobody blames you for your mistakes.

But what if you do look Japanese? Ah, different story.

That’s what autism feels like to me.

Autism, that’s what I have.1 You can’t tell from the outside. So when I tell people about it, that’s what I hear all the time: “But… you don’t look autistic at all!”

1 More about te use of ‘autistic’ versus ‘with autism’ in chapter 7, part 7, on page 211.

Chapter 1. An alien in Tokyo

There I am, in Tokyo. The reason you feel like an alien here, is probably the exact reason why I feel so at ease. I’m an alien everywhere, but in Tokyo I have an excuse. A visible excuse for why I’m different – my 1.83 meter tall Western appearance. No one notices that my awkwardness usually isn’t caused by my gaijin-ness (gaijin is the Japanese word for stranger, foreigner). It also helps that my autistic quirks – such as not looking people in the eye, my aversion to touch, and my love for trains that run on time (and have Quiet Zones that are actually quiet!) – are the most normal thing in the world here. The three months a year that I spend among the neon billboards in Japan are a period of well-deserved rest for me.

Now, it’s not my intention to write a rhapsody on how amazing Japan is. I could go on about it for hours (because hey, autistic), but as far as I’m concerned you could just pick up a good old travel guide or look up the Abroad in Japan, Only in Japan and Begin Japanology videos on YouTube. This book is about autism.

Circus horse

“Autism – that’s being able to count matches really fast and knowing that 7 August 1984 was a Tuesday, right?”

Most people have somewhat of an idea of what the term autism entails. If you yourself have autism, or know someone who is autistic, you probably have a pretty good understanding of it. If you got your information from TV, I’m not so sure.

In this age of advertising revenue, social media, and people with an average attention span of three seconds, network executives go for the extremes. When they’re looking for a person with anorexia, they prefer someone who weighs twenty-eight kilos. Need a teen mom for TV? Only if she’s living on home-brand energy drinks and roll-your-own cigarettes. And if the topic is autism, they want people who have recreated three German cities using model trains or built Eiffel towers out of toothpicks, someone who can draw an accurate picture of New York after a single helicopter flight, or at least someone who can, for any given date, calculate at lightning speed if it was a Tuesday or a Wednesday. Autistics on TV are often portrayed as some kind of circus horse.

If this is also your image of autism, I’m afraid I have to disappoint you. The only reason I know 7 August 1984 was a Tuesday is because it’s the day I was born. I don’t have any circus horse talents, and that goes for the majority of autistics. Also, I don’t want to call every hobby that got out of hand a talent, because anyone can become good at building Eiffel towers if they have the luxury of spending a thousand hours doing that due to a lack of work or social life.

While one autistic person builds Eiffel towers, the other one struggles to fit in at work. Just as complicated most of the time, but a lot less visible. Maybe that is my talent: to appear normal. I’ve gotten pretty good at it by now, if I say so myself.

Autism according to the DSM-5

The criteria for an autism diagnosis are described in the DSM-5, the 5th edition of The Diagnostic and Statistical Manual of Mental Disorders (or the Junior Woodchucks’ Guidebook, but for psychiatrists).2

DSM-5 Autism Spectrum Disorder - Diagnostic Criteria

APersistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive; see text):

1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.

2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.

3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

BRestricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):

1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypes, lining up toys or flipping objects, echolalia, idiosyncratic phrases).

2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same food every day).

3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).

4. Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

CSymptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).

DSymptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

EThese disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay.

In short, what it comes down to is that someone who has autism has trouble with communication and social interaction and has typical behaviours and interests. This must have been the case your entire life, it has to be a real burden and there can’t be any other underlying cause.

I’ll go into the aforementioned symptoms in more detail later, but there’s one issue I’d like to point out here: this list is clearly based on a neurotypical (non-autistic) person’s point of view. The limitations in communication and social interaction are listed at the top as the most important characteristics, because those are what an outsider notices first. Of course, that outsider, being the psychiatrist, is also the one making the diagnosis. But if you ask autistic people what they struggle with most, it’s usually overstimulation (the last point in category B) they mention first.

ASDF#%$#TF?

If you’re thinking, I‘ve heard of autism, but also of Asperger, ASD, PDD-NOS – what does it all mean? Since the DSM-5 came out, everything has been called ‘autism spectrum disorder’ (ASD). As a consequence, Asperger and PDD-NOS no longer exist as diagnoses but have been included in the umbrella term ‘autism’.

Multidimensional vector space

Autism is referred to as a spectrum disorder, which indicates that the disorder has a range, from lower-functioning to higher-functioning autistics. This view might be a bit too straightforward, however. Because would someone who doesn’t speak but does build complex computer models be considered a higher-functioning or lower-functioning autistic? Autistics’ capacities are usually disharmonic, which – simply put – means they’re unevenly distributed. A person who seems to manage in everyday life may be experiencing mental problems that make life nearly unbearable. So autism isn’t necessarily a line from zero to a hundred, but rather a multidimensional vector space. Go and look that up in a maths textbook.

2 In this book, we cite from the Diagnostic and Statistical Manual of Mental Disorders, fifth edition, by the American Psychiatric Association. That’s why some words, for example “behavior”, are spelled differently.

The Theory of Mind (and why it’s shit)

There’s a little girl sitting opposite a stern-looking lady wearing a plaid blazer. Her parents told her she was going to play, but instead of colouring, she has to listen to this woman. The woman has two plastic dolls in her hands. “This is Sally”, she says, while showing the girl one of the dolls. “And this is Anne.”

Sally has a marble in her basket. Anne has a box. The girl wonders why.

“One day Sally and Anne are playing with the marble in their house”, the woman in the plaid blazer says. The girl is confused. She doesn’t see a house and it isn’t clear to her on which day Sally and Anne are playing. So far there’s been no playing at all. She still wants to colour.

“Sally is going outside now”, says the woman. The girl looks at her lips. She’s wearing lipstick. Orange. The woman puts the Sally doll under the table. The girl doesn’t understand: wasn’t she going outside?

“Anne is naughty and moves the marble to her box”, the orange lips say. The little girl is startled: being naughty is wrong! Meanwhile orange-lip-woman lifts Sally up onto the table, then asks the girl, “Where will Sally look for her marble?”

The girl thinks. What’s going on here? Why is Sally looking for her marble? Did she lose it? Cautiously, the girl looks toward the basket. Orange lipstick doesn’t respond. The marble is in the box, the girl knows that.

“Where will Sally look for her marble?” the lips ask once more. If she wants to find the marble she should look in Anne’s box, the girl thinks. She carefully points at the box. The analyst seems content with that answer, because she continues on to the next question. The girl still wants to colour. Something with orange. A tangerine, or the sun, at night. The girl has autism, and according to this examination she lacks Theory of Mind.

Scientists have been searching for an explanation for autism for ages. Some with the desire to “cure” us autistics or, even creepier, eradicate us, as if we’re back to the eugenics of the 1930s. Others are mainly trying to understand us, with varying degrees of success. In the first half of the twentieth century for instance, people believed mothers of autistic children didn’t give their offspring enough love. Thankfully that theory has been banished to the realm of fairy tales, although, as you will find out further on in this book, we never seem to get rid of it completely.

Nowadays, the leading theory is that autistics have difficulty with the Theory of Mind, the ability to realise that other people think or feel differently than we do. The Theory of Mind model was first presented in 1985 by researchers Alan Leslie, Uta Frith and Simon Baron-Cohen. (If you’re thinking, huh? Borat? No, that’s Sacha Baron-Cohen, his cousin.)

In the research that led to the Theory of Mind model, the Sally-Anne play was performed for a few children. Autistic children answered the question where Sally would look for her marble wrong more often than the control group. Baron-Cohen and his colleagues concluded that autistics can’t put themselves in someone else’s place.

More precisely: according to them, people with autism don’t realise that other people think differently than they do and are unable to observe their own thoughts. It would explain why most autistics don’t play games such as ‘playing house’, and why it’s believed they can’t lie. Personally, I have always had my doubts about this theory, as do many other autistics.

I still remember how upset I was when my mother explained to me what Sinéad O’Connor’s ‘Nothing Compares 2 U’ is about. The song, which is about the sadness of an abandoned lover, was a hit in February of 1990; I was five years old back then. I also remember my mother asking me why I was crying, and making up a story about bumping into the table. It was probably the least credible lie ever, but it was still a reflection of my Theory of Mind. After all, I was trying to trick my mother.

To this day I can get overwhelmed by other people’s emotions at the silliest, most unexpected moments – during a visit to ‘Plopsaland’ (a children’s theme park in Belgium), for example. My ex-boyfriend Mark and I went there for my twenty-sixth birthday because K3 was going to perform there. Together we had been watching the TV show in which the kiddie pop band went looking for a replacement for band member Kathleen, and we wanted to see how Josje, the winner, would do at a live performance. While devouring a pizza, long before the gig was supposed to start, the music suddenly started. K3 appeared on stage. All kids jumped up, eyes the size of dinner plates. “Relax, sit down, it’s just a quick soundcheck!”, Karen shouted into her mic. And me? I was crying.

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.

And that’s often what I do. Close myself off. Turn away. I refused to come along to the Dutch classic ‘Soldier of Orange’, not because I hate musicals, but because I didn’t want to be confronted with the emotions. I dread auntie Mary’s birthday because I know I’ll be overwhelmed by the three big kisses, the loud laughter and the smell of buckets of old-lady perfume.

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?

A double empathy problem

In 2007 a silverback gorilla named Bokito escaped from Blijdorp Zoo in Rotterdam. He attacked a woman, who sustained hundreds of bites, various broken bones and a shattered hand. The woman was under the impression she had a special bond with the ape: he “smiled” at her and made eye contact. That by making eye contact she was provoking Bokito never occurred to her. Not even after the zoo staff’s repeated warnings.

The misinterpretation of animal behaviour is a well-known phenomenon. Pet owners, for example, often project their own feelings and thoughts onto their pets, and you can hear them say things like “my cat is really stubborn” or “my dog felt guilty”. According to Damian Milton, a researcher at the University of Kent, a similar difference occurs between autistics and neurotypicals: the double empathy problem.3

People like to fill in thoughts and emotions for others. They do this based on their own experiences: “After hearing news like that I’d cry, so if you don’t, that means you feel less sadness.” Even though Milton’s theory poses that the empathy problem works both ways (hence the word double), it’s the neurotypicals of this world who determine the desired, “normal” reaction to all sorts of events and emotions. It’s the neurotypicals who are in the majority and therefore determine how we view autism. 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.

When I went to Japan for the first time, I noticed that a lot of what I considered to be set rules and concepts was different there. Looking people in the eye, polite? Absolutely not. A bit of noise creates a nice atmosphere? Nope, it’s antisocial. Slurping noodles, gross? Not at all, it makes the noodles taste extra good! I realised what Milton also concluded in his research paper: social reality is a construct, a set of rules that the players determine together.

This is also at the core of the problem with the Theory of Mind experiment by Baron-Cohen and associates, which recently received some criticism. The experiment takes place in a social setting created by and according to the standards of neurotypical people. That will inherently affect the results. Analysis of video recordings shows that the researchers don’t pick up on certain non-verbal signals displayed by the autistic children4. This causes the children to doubt themselves and adjust their answers. 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. But a researcher who thinks that someone who doesn’t answer questions according to neurotypical standards has a problem, is the one with a lack of understanding, in my opinion.

Autistics among each other usually have far fewer communication problems. We find each other online, recognise each other’s struggles and talents and form friendships in which we don’t have to wear masks, where it’s okay not to go to someone’s birthday and where no one is shocked by blunt remarks. And even in these friendships I sometimes feel insecure. Insecure because the neurotypical behaviour has been so exhaustingly pounded into me, I sometimes honestly don’t know who I am anymore.

.

3 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

4 Korkiakangas, T., Dindar, K., Laitila, A. en Kärnä, E., ‘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 Intense World Theory (and why it is the shit)

The Theory of Mind model mainly focuses on differences in communication from the neurotypical point of view. Milton’s double empathy problem gives an explanation for the difference in communication, but we still have quite some way to go. We have a different neurotype, a different way of processing information, but why? And how do you explain someone’s love for trains, hypersensitivity to certain textures or aversion to bright lights and loud noises?

A more inclusive, more comprehensive explanation can be found in the Intense World Theory, a theory that has been gaining more credence in the past few years. The founders of this theory, neuroscientists Henry and Kamila Markram, have an autistic son. 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.

Or, as the Markrams explain in their scientific publication from 2010:

“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

An abundance of stimuli can be tricky, but there’s an upside to it. 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. The Markrams argue that more autistics could use their potential if their environment would enable them to do so.

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.

In their own words:

“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.”6

So, as it turns out, the old Dutch saying of ‘calmness, cleanliness and consistency’ is not so silly after all.

Uta Frith, one of the scientists on team Theory of Mind, felt this new theory breathing down her neck and decided to make herself look like a complete fool once and for all. On spectrumnews.org, the website that calls itself ‘the leading source of news and expert opinion’ in the field of autism, she wrote:

“Our particular concern regarding the Intense World Theory centers on drastic suggested treatments for individuals with autism, namely withdrawing stimulation during infancy. The Markrams do not merely hint at such interventions, but explicitly spell them out. Yet if the theory is incorrect, these treatments could be damaging. As studies of Romanian orphans have strikingly shown, insufficient stimulation and impoverished neuronal input in early development are damaging to children’s social, cognitive and emotional functioning.”7