Also by Bianca Toeps

But You Don’t Look Autistic at All

Ik ben autastisch! (Dutch only)

Colofon

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NUR 400

© 2023 Toeps Media

© 2023 Bianca Toeps

English translation: Megan Hershey

Layout and formatting: Studio L.E.O.

Cover design: ANO Studio, www.ano-studio.nl

Maps: ANO Studio, www.ano-studio.nl

Author photo: Maan Limburg

Hair and makeup: Charlotte van Beusekom

The maps in this book have been simplified and stylized for clarity. They’re meant to give readers an idea of where the places I mention are located. Japan obviously has far more train and subway lines, interesting places, islands, and mountains than are shown here.

All rights reserved. No part of this work may be reproduced in any form, in whole or in part.

This book is an adaptation of the original Dutch version, Deze autist ging naar Japan, published by Blossom Books, 2023.

Shit just got interesting

– Maria Mena

Introduction

You might have heard the term “inspiration porn.” It was coined in 2012 by Australian comedian and journalist Stella Young, who was born with a genetic disorder called osteogenesis imperfecta, also known as brittle bone disease, and used a wheelchair for most of her life. Stella wrote about the tendency for nondisabled people to view disabled people as “inspiring” just for doing completely ordinary things. For example, she described how a woman once approached her on her morning commute and gushed about how Stella was such an inspiration for taking the train every day—though she was simply on her way to work like everyone else.

A less subtle form of inspiration porn can be found in those motivational memes people like to share online: “This guy with no arms or legs climbed Mount Everest; what’s your excuse?” Personally, my excuse is that Mount Everest is really fucking cold. All joking aside, though: the line between sincere appreciation and inspiration porn can be hard to define. No one wants to be seen as an object of pity who only exists to make others feel better about themselves (“Phew, at least my life isn’t as bad as yours!” #blessed #grateful), yet it’s important to acknowledge that some things really are more difficult for people with disabilities. Even seemingly mundane things like taking the train to work, as in Stella’s example, can be complicated due to a lack of accommodations and support. As an autistic person, I often feel overwhelmed by all the noise when I travel by train, so I have a few tricks up my sleeve: I use ear plugs, avoid traveling during rush hour, and spring for a first-class ticket whenever possible. It still takes a lot out of me, so if someone wants to tell me I’m an inspiration for doing it anyway, I’d probably think they were being a bit dramatic, but it wouldn’t feel completely off-base.

It’s more the second half of the Everest meme—“what’s your excuse?”—that I have a problem with. After all, not everyone can afford a first-class ticket or has the luxury of avoiding rush-hour traffic.

When I was diagnosed with autism spectrum disorder in 2010 at the age of twenty-six, I wasn’t in a good place (to put it mildly). I’d always had trouble with things like social interaction, sensory processing, and dealing with change. But now, after three unfinished degrees, a stressful career as a freelance photographer that was quickly becoming too much for me to handle, and a rocky, on-again, off-again relationship with my then-boyfriend Mark, I felt like a complete loser. A little voice inside me whispered, “Why don’t you ever finish anything? Why can’t you just relax and have fun? Why do you have to make everything so complicated?”

As a teenager, I’d had an eating disorder. Autistic girls are particularly vulnerable to developing eating disorders, probably because we subconsciously look for ways to manage sensory input and impose order on an unpredictable world. I went through therapy and haven’t had too many issues with food since then, but no one picked up on my autism at the time. In the years that followed, I suffered multiple burnouts and my self-esteem sank lower and lower with every failed photoshoot, social gathering, and vacation. I struggled to make sense of it all, until one day a friend sent me an article about autism in women, and suddenly it all clicked. I talked to my doctor, who referred me to a specialist. Many hours of interviews and testing later, I finally received my autism diagnosis.

Did my problems magically disappear after that? Nope. Or at least, not immediately. Learning to live with autism has involved a lot of ups and downs. Initially, I expected to fix all my problems at once, and I struggled for a while when that proved to be impossible. But over time, I’ve figured out what works best for me and my autistic brain. I started blogging about my experiences and eventually wound up writing a best-selling book, But You Don’t Look Autistic at All.

The book you’re reading now is about how I moved from the Netherlands to Japan. More specifically, it’s about how I moved to Japan as an autistic person. Does that make it inspiration porn? Or, as some on the opposite end of the Twitter spectrum might say, am I flaunting my autism diagnosis? The truth is probably somewhere in the middle. Obviously, it would be great if my book could inspire people to do something they’ve always wanted to do, to chase their dreams or take a leap into the unknown. And I don’t just mean autistic people, but everyone—I’m not as quick to divide the world into rigid categories like “autistic vs. neurotypical” or “disabled vs. non-disabled” as I once was. We all have our own struggles, some more visible than others. Sometimes, just hearing about how someone else overcame an obstacle can inspire us to keep trying, too. So by all means, feel free to think that I’m brave, tough, or inspiring for moving to Japan. Just don’t use my story to make someone else feel bad for not doing the same.

If you prefer, you can treat this book like an episode of one of those reality shows about people who leave everything behind to start a new life somewhere else, reminding you to be extra-grateful for your roomy home in the suburbs because holy fuck, emigrating sounds like an absolute nightmare! Or you can simply read it as a collection of impressions of Japan that are hopefully slightly less sensationalistic than what you see on TV.

As for my autism diagnosis, I don’t see myself as flaunting it; it’s more that I’m no longer ashamed of it. My autism has influenced the entire course of my life and is probably the reason I wound up in Japan in the first place. If I were to leave out that part of myself, none of this book would even make sense. Joyless types who write angry letters to the editor about how “autism is everywhere nowadays” often claim that people with a diagnosis use it as an excuse: “Yeah, sorry I acted like a dick, but I’m autistic” or “I can’t/won’t put in any effort and you shouldn’t expect me to.” I’d like to think that moving to Japan and starting my own business here is probably proof enough that I’m not hiding behind my diagnosis, even if I did stick the word “autistic” on the cover of this book in all caps.

So basically, I’m content to hang out here in the gray area between victimhood and inspiration, and I won’t ask a thing of you (though I wouldn’t say no to a positive review on Amazon or Goodreads or whatever, whether or not you fall into the “inspired” camp).

Autism—that’s when you can count toothpicks at lightning speed and know that August 7, 1984, fell on a Tuesday like some kind of walking calendar, right? And you lack empathy and you freak out and start throwing stuff when faced with even the tiniest changes to your routine? Um, no. (Though that last bit is tempting at times.)

According to the DSM-5, the diagnostic manual used by mental health professionals, autism is a pervasive developmental disorder. This means that autistic brains develop differently from those of non-autistic people. As a result, autistic people may struggle with things like processing input from our senses, communicating, or behaving in expected ways. We may have trouble picking up on subtle hints, dealing with sudden changes, or transitioning from one activity to the next. In an attempt to cope with the overwhelming input from our senses, we sometimes cling to rules and routines, causing us to seem rigid.

In the past, autistic people were often thought of as psychopaths who lacked emotions or empathy. Today, we know that there are inherent differences in how autistic and non-autistic people communicate, which can lead to misunderstandings—on both sides. We also know that many autistic people shut down when their emotions become too intense. It might seem like they don’t feel anything, but the opposite is actually true.

In the past, clinicians distinguished between “classic” autism, Asperger syndrome, and PDD-NOS. With the introduction of the DSM-5, these separate categories were all folded into a single diagnosis: autism spectrum disorder. As you might guess from the word “spectrum,” there can be huge differences between people diagnosed with autism. Some require around-the-clock care, while others can function more or less independently. Some autistic people (fewer than half) also have an intellectual disability, while others have IQs in the gifted range. This latter group often learns to “mask” their autism by imitating others. Constant masking can be incredibly stressful for autistic people, especially if their chameleon-like ability to blend in prevents them from being diagnosed. They may struggle to understand why they have such a hard time with tasks or social interactions that seem so easy for everyone else. Eventually, this can lead to a phenomenon known as “autistic burnout.”

While the DSM mainly focuses on the negative aspects of autism, especially the ones that can be seen from the outside, autistic behavior isn’t necessarily bad; sometimes it’s just different. And while I might be a bit biased, sometimes I think it’s actually better. For example, autistic people can be very precise and are often highly knowledgeable about a particular subject. And while hypersensitive senses can make going to parties a living hell, they can be a real asset if you’re a piano tuner or a quality control inspector. In the right context, autistic people can truly thrive.

Oh, and before you go sending me hate mail for saying “autistic people” because you’ve heard you’re supposed to say “people with autism”: please don’t. While there’s still some debate on the matter within the autistic community itself, and I certainly don’t pretend to speak for everyone, I do know that most autistic people prefer to be called just that: autistic. Their autism is an essential part of who they are. Some even find the phrase “person with autism” insulting because they think it makes autism sound like a disease: “What a nice kid; shame about the autism, though.” Personally, I don’t think it always has that connotation, so I tend to use “autistic person” and “person with autism” interchangeably. Now everyone can find something to be upset about. Hooray!

A traditional Japanese delicacy eaten before watching trashy reality TV in your room

Hey Toeps, Why Don’t You Just Move to Japan?

“Why don’t you just move to Japan?” I got asked that question every time I left the Netherlands for another three-month stay in Japan, as well as every time I returned home and found myself almost instantly annoyed by my Dutch compatriots for talking loudly in the quiet car of the train. And every time, my answer was the same: “Um, it’s complicated.”

I’d looked into it many times, of course. All the forums and social media posts seemed to say the same thing: There’s no such thing as a self-sponsored visa in Japan. You’ll need someone to sponsor you and serve as a financial guarantor. Your best bet is to get hired by a Japanese company.

Unfortunately, finding a corporate job in Japan isn’t exactly easy, especially if you only speak a few words of broken Japanese, like I did at the time. In that case, your best option is probably the Japan Exchange and Teaching Programme (JET), which puts foreigners to work as English teachers. Or, more accurately, teaching assistants. This involves spending four days each week reading out English words, practicing dialogues, and/or serving as an object of ridicule for thirty or so Japanese kids. If you do somehow manage to find a job at a Japanese company, you’ll almost certainly have to work full-time plus overtime and attend semi-mandatory team-building activities after work.

The thing is, I was actually pretty happy with the life I’d built for myself in the Netherlands. I mean, sure, I often felt annoyed by how loud Dutch people are and how dirty our public spaces are compared to those in Japan. And I missed Japan’s 24-hour convenience stores, fancy trains, spotless public toilets, and mouthwatering ramen. But I had arranged my life in a way that suited me, and I genuinely enjoyed my work.

It hadn’t always been that way—I’d dropped out of several degree programs and suffered a number of autistic burnouts. But after my autism diagnosis, I’d done a lot of soul-searching and had finally found happiness as a web designer, photographer, and webshop owner. Most of my work could be done from the comfort of my own home. Only photography required me to leave the house, but at least that provided me with some much-needed social interaction. After my first book, But You Don’t Look Autistic at All, came out in April 2019, I’d also been doing some public speaking and had even started receiving royalties.

So one thing was certain: there was no way I was going to give all that up to teach English.

Hold on a sec there, Toeps. Did you just say you used to travel to Japan for months at a time? Why would you do that?

Let’s back up a bit. It all started in the spring of 2008, when I was twenty-three. A friend of mine, Maan, had decided to spend two months in Japan. She’d been there for a while already and had done virtually nothing the whole time—or everything, depending on how you look at it. She’d rented a room in Tokyo’s popular Harajuku district through Sakura House, the city’s largest rental agency for foreigners. She visited tourist attractions and museums and did some modeling for photographers she met online. They weren’t paid gigs, but they often netted her a delicious lunch at a sushi bar. She bought herself a whole new wardrobe and regularly mailed Lolita dresses to Japanophiles back home in the Netherlands. The one thing she didn’t do was paid work—it wasn’t allowed since she didn’t have a work visa.

At the time, I was a young but ambitious photographer who had just dropped out of the St. Joost School of Art & Design (they said I was “too commercial” and “fashion-oriented” and I thought they were too artsy) and was coming out of a long-term relationship. Maan invited me to come visit her in Tokyo. I’d never been that far from home before—the longest plane ride I’d ever taken was to the Greek island of Corfu with my mom. I didn’t have the slightest idea what I would do in Japan other than visit Tokyo Disneyland, which had been on my bucket list for a while. I didn’t even really know Maan all that well; I’d met her through a mutual friend and had done a few shoots with her, but that was it. Still, I was tempted. I didn’t have any plans or anything to look forward to and I wanted to leave the house where I’d lived with my ex. Plus, my tax return had just come in. So bought a ticket and headed to Japan.

Things got off to a bit of a rocky start, however. It’s hard to imagine now, but back in 2008, most people in the Netherlands had clunky “brick” phones, while most people in Japan had flip phones. The two kinds of phones operated on different bands, which meant my western phone wouldn’t work on the Japanese network. I wouldn’t be able to call Maan when I arrived, so we planned for her to pick me up at Shinagawa Station.1 To get there, I would need to take the Narita Express, an express train that runs to and from the airport. But things didn’t quite go as planned.

Shortly before landing, we’d been given a form to fill out consisting of questions like: Are you a terrorist? and Are you carrying illegal drugs? A formality, I’d assumed. After all, who would actually answer “yes” to any of those questions? I managed to avoid messing that part up, at least. But when asked to provide the address where I’d be staying, I breezily filled in “staying with a friend.” Unfortunately, the Japanese immigration officers at the airport weren’t impressed with this answer, so I was pulled aside for questioning. Oops.

I was shown into a tiny waiting room along with a few other people. One man, in particular, sticks out in my memory. He sat there merrily banging away on a toy piano, clearly off in his own world. What the hell am I doing here? I wondered.

After waiting for what seemed like ages, it was finally my turn. Most people in Japan speak very little English (even those who work at an international airport, apparently), so I struggled to communicate with the immigration officers. But eventually, they agreed to look up Maan in their system. Luckily, she had provided an actual address on her form, so the officers copied that address into my file. I was free to go.

In the meantime, my train had long since departed. Normally, I would have just called or texted Maan to let her know I was running late, but I didn’t have a working phone. I decided to just hop on the next train headed in the right direction. Instead of the Narita Express, I found myself in a local train that stopped at almost every station along the way. One of the other passengers, a Japanese woman, saw that I’d left my bag on the floor in front of me and motioned for me to lift it onto the luggage rack or shove it under one of the seats. My first thought was: why doesn’t this lady mind her own business? But when a horde of gray-suited businesspeople flooded onto the train at the next stop, I learned my lesson. She’d been right, of course, and I was just a dumb, arrogant foreigner.

My train finally pulled into the station where I was supposed to meet Maan, a full two hours later than planned. I figured I’d have to find an internet cafe and send her a message through the DeviantArt chat (DeviantArt is an online platform for artists and creators, kind of a precursor to Tumblr—and yes, I know this makes me sound old). But when I got off the train, I was relieved to see Maan and her boyfriend, Bob. They’d sat there waiting for me the whole time. “You must be hungry,” they said. “Let’s go get crepes.”

The three of us took the train from Shinagawa to Harajuku. From there, we walked to one of the many brightly colored crepe stands scattered throughout the district, which churned out fresh crepes that looked and smelled every bit as delicious as the ones you’d find in Paris. But while Parisian crepe toppings are usually limited to sugar, whipped cream, or Nutella, Harajuku crepe stands offer over fifty different options, ranging from ice cream to tuna salad with lettuce. (I’ve never tried that one, by the way—I have my limits.) Detailed wax models of the various crepes and their toppings are displayed in the shop windows, which made my autistic heart sing because I could see exactly what I would be getting. The freshly baked crepes are rolled into perfect cones and wrapped in pink paper. They’re absolutely enormous, and guaranteed to fill you up until dinnertime.

When trying to describe Harajuku to people back home in the Netherlands, I used to refer to Gwen Stefani’s songs “Harajuku Girls” and “What You Waiting For?”. But when I mentioned Stefani’s hits while working on a piece about Japanese fashion for CosmoGIRL! a few years back, I was met with blank stares from many of the younger girls. I guess most of them were still listening to K32 during Gwen’s heyday. So forget Gwen Stefani; here’s my own explanation: Harajuku is the beating heart of Japanese street fashion and youth culture. A wide variety of styles and subcultures come together there. On weekends, would-be influencers parade around Harajuku in elaborate ensembles—even before influencers were a thing, and you just had to hope that a street photographer would come along and land you in that month’s issue of FRUiTS, a legendary Japanese street fashion magazine.

One of Harajuku’s most famous styles is Decora. To give you an idea of what it looks like, picture a Claire’s: the stores with all the hair clips, friendship necklaces, and other sparkly accessories that twelve-year-olds love to spend their allowances on. Now fill a basket with this stuff—like, really fill it—and then put everything in your hair all at once. You can opt for Barbie-style pastels or you can go brighter, like you’ve just rolled through a bag of Skittles. Your outfit should be equally colorful and chaotic. In the words of my beloved K3: “every color of the rainbow!”

And then there’s Lolita style, which is characterized by doll-like dresses and stockings decorated with bows, ruffles, and/or prints of sugary-sweet things like cakes and teddy bears. There’s also a darker version of the style, Gothic Lolita, which features the same kinds of dresses, stockings, and bows, only in black. Contrary to what many westerners believe, Lolita fashion isn’t sexual in nature. The girls who dress this way just enjoy getting all dolled up in fancy clothes and drinking tea with like-minded people. It seems like a recipe for sensory overload to me, but to each their own.

Both Decora and Lolita can be described as kawaii, a Japanese word that roughly translates to “cute.” Harajuku is a mecca for kawaii fans, but there’s also plenty of vintage and punk fashion on display. There are entire Instagram accounts dedicated to Harajuku street style, and rightfully so. Everyone is so colorful and unique. The attention to detail is phenomenal, and the scene is incredibly welcoming of people who are different. When you think of Japan, maybe your first thought is of “salarymen”: wage slaves dressed in identical suits. Or maybe you picture schoolchildren in matching uniforms, or a train full of silent, mask-wearing commuters. If so, you wouldn’t necessarily be wrong—these are common sights in Japan. But at any moment, a blue-haired rockstar can step onto a train full of commuters in a catwalk-worthy outfit, and nobody will bat an eyelash.

Well, maybe not nobody... I couldn’t help gaping at everything in amazement. The people were all so different from what I was used to. It wasn’t just the Harajuku girls, either. Salespeople cooed “irasshaimaseeeee!” at us in high-pitched voices. Supermarket employees addressed us in rapid-fire Japanese, even when it was clear we couldn’t understand a word they were saying. The staff at all the train stations were incredibly friendly and helpful, and random people we asked for directions often walked along with us to make sure we knew where to go.

Once we’d finished our crepes, we headed to Maan’s place on foot. Though she was staying in the bustling Harajuku district, her street somehow felt almost... serene. It branched off Harajuku’s iconic main thoroughfare, yet there was a sense of tranquility there that you sometimes see in anime, where a ray of sunlight dances across a small flower garden and traces the silhouette of the overhead power lines on the ground. It was a place where miniature recycling trucks playing cheerful melodies drove around collecting neatly tied bundles of paper and cardboard that people left on their doorsteps. A place where we often forgot to lock the front door, though it didn’t matter because there’s so little crime in Japan. The street was so lovely and peaceful, yet just around the corner—bam!—there was Harajuku at its wildest and weirdest.

We flopped onto the bed and watched Puberruil, a Dutch reality show in which two teenagers swap places for a few days. Maan had wanted to catch this episode, since she knew one of the people in it. It was a real eye-opener for me—not Puberruil, but the fact that I could just fly to Tokyo, eat crepes with ice cream, then lie around in bed streaming crappy Dutch reality TV. And this was in 2008!

It helped that Maan is such an easygoing person. She just does whatever feels right and doesn’t see the need to plan out every second of her vacation. I only had one “must-do” item on my list: visit Tokyo Disneyland. Other than that, we took it easy. We visited museums, ate sushi, and bought a bunch of clothes and kawaii accessories. We spent an afternoon taking pictures and watched the movie Enchanted. I tend to be a bit of a worrier, but this trip taught me something that continues to inspire me to this day: I could live like this, too, if I wanted to. Nothing was stopping me. Even if it wasn’t perfect—even if I missed my train, or made a mistake, or spent an entire day doing nothing because I was tired.

After that first visit in 2008 and my abrupt decision to drop out of art school, my career as a fashion photographer really took off. My network expanded as I met new stylists, makeup artists, and art directors. I got picked up by an agency, and within about a year, my work started appearing in teen magazines and ad campaigns.

I had something of a love-hate relationship with photography, however. The day after a photoshoot, I’d invariably wake up with a splitting headache from all the stress. I often found myself getting pushed around or overruled by others on the team, or having to fight tooth and nail to make sure that didn’t happen. Sometimes the photos didn’t turn out like I’d pictured them in my head, leaving me terrified about what the client would think. But when things went well and I saw my work prominently displayed in shop windows, I felt a deep sense of pride.

Ever since that first visit to see Maan, I’d dreamed of doing a magazine shoot in Japan. So in 2009, I put together a team and flew to Tokyo to do a series of photoshoots for various Dutch girls’ and women’s magazines. Unfortunately, my dream assignment quickly turned into a nightmare. The stylist and makeup artist, who had initially seemed eager to come along, suddenly decided we needed to earn as much as possible off our trip. They crammed extra jobs into our schedule, until at one point we were booked for seven shoots in the space of ten days. This wasn’t at all what I’d had in mind; I’d just wanted to take some great pictures.

Our overambitious schedule left little room for error. This, combined with a poor grasp of Japanese language and culture, meant it wasn’t long before things started to go seriously wrong. We’d planned a two-day shoot with one of the models, but due to a miscommunication, she’d only been booked for a single day, so I had to move heaven and earth to make new arrangements with the Japanese modeling agency. Some of the locations we’d chosen turned out to be unavailable. Our stylist didn’t share my love of Japan and spent the whole time complaining about everything from the food to the people. There’d been a mix-up with our hotel reservations, so I wound up having to share a bed with Maan, who had come along as my assistant. Needless to say, this didn’t make for a good night’s rest. Our Dutch model suddenly developed an eye infection, leaving us scrambling to make new plans. And to top it all off, one of the shoots turned out so badly that we felt we had no choice but to redo it altogether.

In the end, most of our shoots were rejected. CosmoGIRL! did wind up publishing the one we’d reshot the day before we left, though the fashion director was still upset with me—I hadn’t communicated nearly enough during the trip.

Clients like to be kept in the loop so they can have some say in how things are done. But the stylist and makeup artist had made me promise not to tell anyone that the shoot had gone badly because they were worried it would seem unprofessional. I’d wanted to be open and honest about it, but I also knew that people often found me too direct. The two of them had more industry experience than I did, so against my better judgment, I kept my mouth shut. Upon returning home, I discovered they’d had an additional motive in silencing me: it allowed them to tell their own version of the story, in which they came off looking like a pair of angels. I took the blame for everything and got dumped by CosmoGIRL!, one of my favorite clients.

Even though the shoots had been rejected, I still had to pay Maan and the models, so I actually wound up losing money on the trip. Afterwards, I often wondered how I could have allowed myself to be manipulated like that and how I’d gotten myself into such a mess. A little over a year later, I was diagnosed with autism.

Looking back, it’s bizarre how quickly it all went: only a year after I’d visited Maan as a rookie photographer, I was shooting for well-known magazines. While I clearly had a knack for photography, working in the fashion industry meant dealing with constant backstabbing, sky-high expectations, tight deadlines, ever-shifting schedules, and a dizzying array of magazines and brands that seemed to pop in and out of existence overnight. Together with my as-yet-undiagnosed autism, these demands left me constantly stressed out and overwhelmed.