So: people with autism might talk and behave in peculiar-seeming ways, but this shouldn’t relegate us to a lesser branch of humanity. Please give us the benefit of the doubt and act on the assumption that we’re good people. If you suspect we’re a lost cause, we pick up on that. The value of a person shouldn’t be decided by the judgments of other people. Kindness brings out the best in us all.
I’m not good at having my photograph taken. Staring at the camera is difficult for me, even when my eyes are being directed by someone pointing and telling me, “Look at the camera! Right there!” I wonder if you can guess why? It’s because whenever I hear the word “camera” I run through my mental store of ideas about cameras in an attempt to match them with one I can see in front of me. It’s not quite that a concrete image of a camera floats into my mind; rather, that I try to find common matching aspects between my notions of cameras and the one in my visual field. What I get back is, No, that’s not right and No, this isn’t right, either.
I know very well what a camera is, but when one is put in front of me it sort of stops being a camera and is transformed into some tool-like object. What’s more, if I’m also instructed to “smile!” or “lower your chin a little” or “rest your hands on your knees” I get totally thrown.
No, I’m really not good at having my photograph taken.
I love going away to different places, but often I’m unable to let the people around me know this. I might be happy inside, but because I can’t visualize how I’ll handle being in the new place, I end up having a meltdown or crying and getting overly emotional about even quite trivial things. Neurotypical people don’t suffer from misunderstandings about whether they are happy or not, I think, because they can explain their emotions using words. At times like this I get really sad. When I create trouble for the people I’m with, I become afraid that they’ll start to regret bringing me to the place and that I won’t be allowed out again. It drives me to despair!
My mom, however, knows what I’m feeling and keeps smiling even as she apologizes for me to the people around us. “That was amazing, wasn’t it?” she says to me. Even if I messed everything up and things totally went to pieces, it’ll be, “Let’s go back again, shall we?” In the past, I never handled hotels and new places very well, but these days I’m slowly getting used to it. In fact, going on vacation is one of my biggest pleasures. I encounter landscapes that I don’t normally see and just by having a change of scene I sometimes feel that I’ve become a brand new me.
Traveling with people who have special needs might present difficulties, but please, let it happen. We all need a break and a change of scene sometimes. This is as true for us as it is for you. Being in a new environment can be confusing, but one by one the challenges can be addressed and new things can be experienced. It’s thanks to travel, to encountering new people and being helped by their kindness, that I’ve been made aware of how fantastic life can be. There is a fixed idea that one’s surroundings are everything there is: I’ve come to learn that this fixed idea narrows and limits the way we see things. The vastness of the world is a source of inspiration. Don’t you think?
Wouldn’t it be great to fly?
Everyone dreams this once
at least. But I wonder if it’s not
flying over endless skies
we want but rather to be free
of all the stuff down here, below.
Yet
what if
freedom is not a matter of
leaving things behind, but of
bringing inside what is out. By
opening up the door of the heart,
we take a step toward the world.
Step by step by step by step we might,
one day, hold freedom in our hands.
I was aware of Japan and New York’s thirteen-hour time difference, but because I have a real fixation about time, my mom was anxious about how I’d cope. In the event, I didn’t get as confused as we’d expected. On the in-flight entertainment screen there were two clocks, one for Japan time and one showing the time in New York. It’s strange to think of two times existing simultaneously, but as long as my schedule and actions have one time reference, that’s enough and I’m okay; deciding which clock to synch up with didn’t faze my brain at all. Until I fell asleep on the airplane, I was on Japan time. After I woke up, I switched to New York time. This wasn’t a tip we’d followed or a plan we’d made—it just made sense when I saw the two clocks. Actually, the toughest part was the jet lag. I was sleepy during our entire stay in New York. At our hotel I slept way more than I usually do, and my head was in a groggy round-the-clock haze—which might explain my heightened sense of New York being a dream. Not yawning in front of people is a challenge at the best of times, so I’m afraid that I might have seemed ruder than usual to Americans when I was over there…
Even in New York, thanks to my severe autism, I was the source of stress and inconvenience for many people—as usual. Naturally this wasn’t fun for me either, but on a couple of occasions, despite being in a new city, things went better and more smoothly than they might have done in Japan. On our visit to the Metropolitan Museum of Art, I wandered off the main route through an exhibition and tried to enter a room I wasn’t supposed to go into at that point. A staff member stopped me, but as soon as my mom and our translator explained about my autism, the museum employee said, “Oh, in that case, go ahead, no problem”—just as if he was a special needs assistant with a good understanding of autism—and waved us through with a friendly smile. If this had happened in a museum in Japan, it’s much likelier that the staff member would have told me, “Wait here, please,” and gone off to consult with a supervisor, leaving me in limbo for the duration. My agitation levels would have risen until I was making high-pitched noises like a kettle on a stove, before I boiled over into a meltdown. At times like these, all I want is to see, close up, the artifact that caught my eye—I’m not going to touch it or hassle anyone. I know museums have viewing routes, I know museum staff are right to ask visitors to follow them and I know that I should, too; but sometimes this is simply not an option available to me and I need a little flexibility to break the impasse my autism puts me in. Back at the Metropolitan Museum I looked at the artwork I needed to see, and then rejoined the regular route. Truly, I don’t want VIP treatment. I just want the chance to enjoy extraordinary art and artifacts and have my mind enriched by them. Like anybody else.
English feels like an old friend to me. I’ve always been fascinated by its directness and its rhythmic beauty, so being surrounded by English in New York didn’t feel all that alienating. Despite my liking for the language and having a reasonable vocabulary, I can’t use my alphabet grid to communicate in it, perhaps because I lack exposure to English in my daily life. If I listened to everyday English more in Japan, maybe I could remedy this. Just memorizing set phrases, as we all know, isn’t that much practical use when you want to speak with someone.
I was taken aback by the vastness of New York. The city gave me the impression of an entire country made up of many peoples and cultures. People there believe everyone has the chance to succeed. Maybe this stems from a deep-seated desire to understand others rather than to exclude them. I saw the Statue of Liberty from the water. As I watched her, standing upright and reaching into the sky, I was very moved and thought how I would like to live my life the same way. New York intensified my desire to see the wider world and showed me how narrow was the world I’d known before I went. What I took in with my eyes in New York, what I heard with my ears and felt with my skin, I wish to swap for words. Words I wish to write down. Words I wish to send on their way.
When my family is relaxed and enjoying downtime together at home, I’m at my happiest. I might not be able to join in with their conversation, and from my face and reactions you wouldn’t know that I’m enjoying myself, but just watching my family being a family brings me great pleasure. The times I feel I most belong with them are when they’ve noti
ced some slight change in me. I also love it when I laugh at something on cue and they say, “Hey, Naoki found that funny!” I’m elated when this happens: it’s normally so hard for me to show what I’m feeling in a normal, natural way. Or when we’re dividing up some snacks and they say, “Which one takes your fancy, Naoki?” At times like these I feel a palpable sense of being a part of my family. It’s just great.
I yearn to pass as an ordinary person you’d not give a second glance to. I doubt most people can imagine what it’s like to be noticed and watched the whole time, but when I’m with my family at home, they don’t pay overly close attention to me. My mom and my sister chat away, everyone does their own thing, or house-type jobs, or watches TV…and I get to be an ordinary person. Being at home helps me keep a grip on things and brings me peace of mind. My self-esteem benefits, too, from the fact that I’m never given special treatment in our house. I have no memory of ever being singled out at home, or being guilt-tripped.
I’ve been brought up in my family with full membership and I think that because of this I aspire to live in society without being treated as a special case all the time. My family gives me a place to belong, with attendant roles and responsibilities. I’m neither a princeling nor a spare part, and if we people with special needs belong in our families as a matter of course, is there not hope that one day we’ll create a place in the wider world where we belong, too?
Sometimes my helper and I go to the local library, where I sit myself down in the children’s section and go through picture books. The ones I read are pretty much always the same; in fact, since childhood, the repertoire has hardly altered. I prefer to think this is not owing to limited intelligence; rather, it’s because when I read them, my mind goes wandering off inside the world of the picture book and I can freely, safely, unwind. Here in the real world, there aren’t many places where I and my autism can lower our guard. Like flowing water or the texture of sand or the beauty of light, my favorite picture books afford me a therapeutic comfort.
When I was really little, oddly enough, picture books left me cold. Mom would try to read them to me but I’d just run off—it really did her head in! My knowledge of words was so scant that my mother reading a picture book to me was just another noise—like the sound of lots of people talking all at once. Picture books might look very simple but they require imagination to work; and since I showed zero response to any picture book of any kind, I caused my mother a great deal of worry—so I’m now told. One day, however, she noticed how often I was looking through old photographs. So Mom put together a photo book using our family pictures, and wrote short sentences alongside the images. It was thanks to this that the whole point of picture books “clicked” for me, and from then on the number that I enjoyed steadily grew. Also, I could begin to relate my everyday self to the characters in the books.
Conventional wisdom has it that people with autism have little interest in other people and little understanding of other people’s emotions. I’m no longer so sure about this. One day, I suddenly became aware that Mom wasn’t around and—jolted—I set off in search of her. She was only upstairs, but she was surprised that I’d come looking for her. Previous to this, it had always been my mother who was wondering where I had wandered off to. I’d never searched for anyone else out of anxiety for them as opposed to wanting something from them. I had always existed in a world with just one principal character, much like the world of a picture book. Life for people with autism can be like this, and if only a day could pass as effortlessly as the turning of a page, we would be content. However, this isn’t the same as being incapable of compassion or sympathy. The Naoki who was worrying about where Mom had gone was a Naoki who had jumped out of that picture-book existence. I know I’ll never be like anyone else straightaway—if ever—but little by little, I intend to write my own story.
My family earns my respect. Not because they’re enlightened beings, but because, very simply, they’re there for me, they wish me the best, and they accept me for who I am. That might sound run-of-the-mill but I know well how taxing it is to share a life with me and this disability known as autism. My family gets stony glares from strangers and they’re messed around by my fixations, panic attacks and meltdowns, but they never turn their backs on me. They’re used to these things; end of story. Thanks to this “water off a duck’s back” attitude, they show me hope for the future, lift me out of passive resignation and help me understand that my lot in life isn’t so freakishly out of the ordinary after all.
Everyone ought to be worthy of respect. The word evokes reverence—an image of admiring a person, or of striving to emulate them. In my case, however, the people I respect outside my family are those who have taught me various things as I’ve moved through life. Schoolmaster-type instruction leaves me a little cold: what impresses me more is how a person lives his or her life.
My mother is unshakable. She looks like any other mom, but nothing can faze her. Even when things go horribly pear-shaped, she never kicks up a fuss or loses her head. She just accepts and embraces my feelings and responses. I think this is why I can speak with her about anything, anything at all. Mom’s number one goal in life seems to be to make my family laugh. She praises me and my sister to the skies when we’ve done or said something funny; if we’ve done housework or if we’ve been studying, all we’ll get is a “Thanks!” or a “Well done”—though this, too, she says from the heart, so I’m still warmed by her words.
I hear it said sometimes that for very young children with autism, even the notion of having parents might not register. In my case, too, I only became aware that my parents were my parents at a later stage than my neurotypical peers. I guess you might think this makes it harder for a parent-child bond to form, but I disagree. A child might not know what a “parent” is exactly, but we are filled and ingrained, I believe, with the love our parents have poured into us. My mother might once have been just a “useful person” but I grew to appreciate how devoted she is. Sentiments such as I’ll love my child when his mind is maturer or She doesn’t understand anything so she can’t feel love are way off the mark. Way off the mark.
I like hanging out in my sister’s room. She never shoos me away. We don’t necessarily interact—I just enjoy her company. Often she’s studying or reading magazines at her desk, while I sit on the floor leafing through picture books or doing number games. Being with her like this is more fun than being on my own and I’m really thankful for this place, right here in my big sister’s room, where I’m never rejected or get special treatment.
I’ve heard people say that it’s difficult to raise siblings without betraying any favoritism at all, but I’m not so sure that siblings really want identical treatment. What they want to feel is an equality of love. If I didn’t feel this in our house, then regardless of whether I was being treated better than my sister or more shoddily, I’d still feel a sense of grievance toward our parents. But I feel my sister and I are loved equally, especially when I see her getting on well with Mom and Dad, and looking happy to be here. My sister is my mirror, in one sense. If she wasn’t comfortable at home, I couldn’t be. Happiness that comes at someone else’s expense isn’t happiness—especially if that someone else is precious to you. Even when I have to monopolize our mom’s time, my sister doesn’t get jealous—she knows that we’re concentrating and working, and not just idling the day away.
Every single one of us has roles to fulfill and challenges to face, and none of us is a hero, not on close examination. My family has its share of difficulties, just like any other. But it’s this equality of love that my sister and I both feel from our parents which lets us feel at home, at home.
Fathers—if present—play a key role in family life, and irrespective of whether he’s a loving and active dad, a workaholic, not much interested in raising the kids or living with a long-term illness, for better or for worse, your father’s your father and you only have the one. I rarely talk about my father in a public forum like this. He
’s a company employee, so I don’t want to create any awkwardness or embarrassment for him. Lots of people I’ve met are curious about how my father interacts with me, but I wouldn’t say he’s done anything all that out of the ordinary. While my mother and my sister keep an eye on me around the clock, my dad doesn’t have that much to say about what I might or might not be up to. When he’s home he likes to read the paper or watch the news on TV. If there’s a report that captures his attention, he’ll discuss it with us at some length. What really piques his interest is whether statistics are being used misleadingly, or where an argument is contradicting itself. He’s very good at pointing these instances out. Dad had a technical education and he finds it unforgivable when data is oh-so-conveniently misinterpreted and dodgy “findings” are proclaimed as self-evident truths. My father’s opinions keep me on my toes. He talks about what happens behind the scenes in society and about half-hidden episodes in history, and he airs points of view that can differ markedly from my mother’s and sister’s. While my dad’s talking you might not guess from my general demeanor that I’m listening attentively—but I am.
What I’ve learned from my father is that society is composed of diverse types of people who hold diverse points of view. Via these diverse points of view you can learn to see and think about the world in ways you won’t find in textbooks. My father’s independence of mind often goes against the flow of the majority, and how he stays true to his own ideas influences my own sense of values and, I hope, my individuality as a writer.
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