"The Reason I Jump"by Higashida Naoki
Introduction
The thirteen-year-old author of this book invites you, his reader, to imagine a daily life in which your faculty of speech is taken away. Explaining that you�re hungry, or tired, or in pain, is now as beyond your powers as a chat with a friend. I�d like to push the thought-experiment a little further. Now imagine that after you lose your ability to communicate, the editor-in-residence who orders your thoughts walks out without notice. The chances are that you never knew this mind-editor existed, but now that he or she has gone, you realize too late how the editor allowed your mind to function for all these years. A dam-burst of ideas, memories, impulses and thoughts is cascading over you, unstoppably. Your editor controlled this flow, diverting the vast majority away, and recommending just a tiny number for your conscious consideration. But now you�re on your own.
Now your mind is a room where twenty radios, all tuned to different stations, are blaring out voices and music. The radios have no off-switches or volume controls, the room you�re in has no door or window, and relief will come only when you�re too exhausted to stay awake. To make matters worse, another hitherto unrecognized editor has just quit without notice�your editor of the senses. Suddenly sensory input from your environment is flooding in too, unfiltered in quality and overwhelming in quantity. Colors and patterns swim and clamor for your attention. The fabric softener in your sweater smells as strong as air freshener fired up your nostrils. Your comfy jeans are now as scratchy as steel wool. Your vestibular and proprioceptive senses are also out of kilter, so the floor keeps tilting like a ferry in heavy seas, and you�re no longer sure where your hands and feet are in relation to the rest of you. You can feel the plates of your skull, plus your facial muscles and your jaw; your head feels trapped inside a motorcycle helmet three sizes too small which may or may not explain why the air conditioner is as deafening as an electric drill, but your father�who�s right here in front of you�sounds as if he�s speaking to you from a cellphone, on a train going through lots of short tunnels, in fluent Cantonese. You are no longer able to comprehend your mother tongue, or any tongue: from now on, all languages will be foreign languages. Even your sense of time has gone, rendering you unable to distinguish between a minute and an hour, as if you�ve been entombed in an Emily Dickinson poem about eternity, or locked into a time-bending SF film. Poems and films, however, come to an end, whereas this is your new ongoing reality. Autism is a lifelong condition. But even the word �autism� makes no more sense to you now than the word
Thanks for sticking to the end, though the real end, for most of us, would involve sedation and being forcibly hospitalized, and what happens next it�s better not to speculate. Yet for those people born onto the autistic spectrum, this unedited, unfiltered and scary-as-all-hell reality is home. The functions that genetics bestows on the rest of us�the �editors��as a birthright, people with autism must spend their lives learning how to simulate. It is an intellectual and emotional task of Herculean, Sisyphean and Titanic proportions, and if the autistic people who undertake it aren�t heroes, then I don�t know what heroism is, never mind that the heroes have no choice. Sentience itself is not so much a fact to be taken for granted, but a brick-by-brick, self-built construct requiring constant maintenance. As if this wasn�t a tall enough order, people with autism must survive in an outside world where �special needs� is playground slang for �retarded,� where meltdowns and panic attacks are viewed as tantrums, where disability allowance claimants are assumed by many to be welfare scroungers, and where British foreign policy can be described as �autistic� by a French minister. (M. Lellouche apologized later, explaining that he never dreamed that the adjective could have caused offense. I don�t doubt it.)
Autism is no cakewalk for the child�s parents or carers either, and raising an autistic son or daughter is no job for the fainthearted�in fact, faintheartedness is doomed by the first niggling doubt that there�s Something Not Quite Right about your sixteen-month-old. On Diagnosis Day, a child psychologist hands down the verdict with a worn-smooth truism about your son still being the same little guy that he was before this life-redefining news was confirmed. Then you run the gauntlet of other people�s reactions: �It�s just so sad�; �What, so he�s going to be like Dustin Hoffman in
Where to turn to next? Books. (You�ll have started already, because the first reaction of friends and family desperate to help is to send clippings, Web links and literature, however tangential to your own situation.) Special Needs publishing is a jungle. Many
Another category is the more confessional memoir, usually written by a parent, describing the impact of autism on the family and sometimes the positive effect of an unorthodox treatment. These memoirs are media-friendly and raise the profile of autism in the marketplace of worthy causes, but I have found their practical use to be limited, and in fairness they usually aren�t written to be useful. Every autistic person exhibits his or her own variation of the condition�autism is more like retina patterns than measles�and the more unorthodox the treatment for one child, the less likely it is to help another (mine, for example).
A fourth category of autism book is the �autism autobiography� written by insiders on the autistic spectrum, the most famous example being
One day my wife received a remarkable book she had ordered from Japan called
The book goes much further than providing information, however: it offers up proof that locked inside the helpless-seeming autistic body is a mind as curious, subtle and complex as yours, as mine, as anyone�s. During the 24/7 grind of being a carer, it�s all too easy to forget the fact that the person you�re doing so much for is, and is obliged to be, more resourceful than you in many respects. As the months turn into years �forgetting� can become �disbelieving,� and this lack of faith makes both the carer and the cared-for vulnerable to negativities. Naoki Higashida�s gift is to restore faith: by demonstrating intellectual acuity and spiritual curiosity; by analysis of his environment and his condition; and by a puckish sense of humor and a drive to write fiction. We�re not talking signs or hints of these mental propensities: they�re already here, in the book which (I hope) you�re about to read.
If that weren�t enough,
For me, all the above is transformative, life-enhancing knowledge. When you know that your kid wants to speak with you, when you know that he�s taking in his surroundings every bit as attentively as your nonautistic daughter, whatever the evidence to the contrary, then you can be ten times more patient, willing, understanding and communicative; and ten times better able to help his development. It is no exaggeration to say that
The author is not a guru, and if the answers to a few of the questions may seem a little sparse, remember he was only thirteen when he wrote them. Even when he can�t provide a short, straight answer�such as to the question �Why do you like lining up your toys so obsessively?��what he has to say is still worthwhile. Naoki Higashida has continued to write, keeps a nearly daily blog, has become well known in autism advocacy circles and has been featured regularly in the Japanese
The Reason I Jump
Preface
When I was small, I didn�t even know that I was a kid with special needs. How did I find out? By other people telling me that I was different from everyone else, and that this was a problem. True enough. It was very hard for me to act like a normal person, and even now I still can�t �do� a real conversation. I have no problem reading books aloud and singing, but as soon as I try to speak with someone, my words just vanish. Sure, sometimes I manage a few words�but even these can come out the complete opposite of what I want to say! I can�t respond appropriately when I�m told to do something, and whenever I get nervous I run off from wherever I happen to be. So even a straightforward activity like shopping can be really challenging if I�m tackling it on my own.
So
Thanks to training I�ve had with Ms. Suzuki at Hagukumi School, and my mom, I�ve learned a method of communication via writing. Now I can even write on my computer. Problem is, many children with autism don�t have the means to express themselves, and often even their own parents don�t have a clue what they might be thinking. So my big hope is that I can help a bit by explaining, in my own way, what�s going on in the minds of people with autism. I also hope that, by reading this book, you might become a better friend of someone with autism.
You can�t judge a person by their looks. But once you know the other person�s inner self, both of you can be that much closer. From your point of view, the world of autism must look like a deeply mysterious place. So please, spare a little time to listen to what I have to say.
And have a nice trip through our world.
The alphabet grid is a method of non-vocal communication. You might think that speech is the only way to get your points and intentions across, but there is another way to say what you want without using the vocal nervous system. At first I never dreamed I could make it work, but now I�m well able to express my true self using only a computer and an alphabet grid.
This was an incredible feeling! Not being able to talk means not being able to share what you�re feeling and thinking. It�s like being a doll spending your whole life in isolation, without dreams and without hopes. Sure, it took a long time before I could finally start communicating via written text on my own, but on that first day when my mom supported my writing hand in hers, I began to acquire a new way of interacting with others.
Then, to allow more independent communication, Mom invented the alphabet grid. The alphabet grid makes it possible to form my words by simply pointing to their letters, instead of having to write them out one by one. This also lets me anchor my words, words that would otherwise flutter off as soon as I tried to speak them.
Often, while I was learning this method, I�d feel utterly beaten. But finally I arrived at the point where I could indicate the letters by myself. What kept me hammering away at it was the thought that to live my life as a human being, nothing is more important than being able to express myself. So for me, the alphabet grid isn�t just about putting together sentences: it�s about getting across to other people what I want and need them to understand.
People often tell me that when I�m talking to myself my voice is really loud, even though I still can�t say what I need to, and even though my voice at other times is way too soft. This is one of those things I can�t control. It really gets me down. Why can�t I fix it?
When I�m talking in a weird voice, I�m not doing it on purpose. Sure, there are some times when I find the sound of my own voice comforting, when I�ll use familiar words or easy-to-say phrases. But the voice I can�t control is different. This one blurts out, not because I want it to; it�s more like a reflex.
A reflex reacting to what? To what I�ve just seen, in some cases, or to some old memories. When my weird voice gets triggered, it�s almost impossible to hold it back�and if I try, it actually hurts, almost as if I�m strangling my own throat.
I�d be okay with my weird voice on my own, but I�m aware that it bothers other people. How often have the strange sounds coming out of my mouth embarrassed me nearly to death? Honest, I want to be nice and calm and quiet too! But even if we�re ordered to keep our mouths shut or to be quiet, we simply don�t know how. Our voices are like our breathing, I feel, just coming out of our mouths, unconsciously.
It�s true; I always ask the same questions. �What day is it today?� or �Is it a school day tomorrow?� Simple matters like these, I ask again and again. I don�t repeat my question because I didn�t understand�in fact, even as I�m asking, I know I do understand.
The reason why? Because I very quickly forget what it is I�ve just heard. Inside my head there really isn�t such a big difference between what I was told just now, and what I heard a long, long time ago.
So I do understand things, but my way of remembering them works differently from everyone else�s. I imagine a normal person�s memory is arranged continuously, like a line. My memory, however, is more like a pool of dots. I�m always �picking up� these dots�by asking my questions�so I can arrive back at the memory that the dots represent.
But there�s another reason for our repeated questioning: it lets us play with words. We aren�t good at conversation, and however hard we try, we�ll never speak as effortlessly as you do. The big exception, however, is words or phrases we�re very familiar with. Repeating these is great fun. It�s like a game of catch with a ball. Unlike the words we�re ordered to say, repeating questions we already know the answers to can be a pleasure�it�s playing with sound and rhythm.
For a long time, I�ve noticed that people with autism often repeat questions, like parrots. Instead of answering the question, we just say the exact same question straight back at the person asking it. Once, I thought we did it simply because we didn�t know how to answer, but now I think there�s more to the mystery than this.
Firing the question back is a way of sifting through our memories to pick up clues about what the questioner is asking. We understand the question okay, but we can�t answer it until we fish out the right �memory picture� in our heads.
It�s quite a complicated process, this. First, I scan my memory to find an experience closest to what�s happening now. When I�ve found a good close match, my next step is to try to recall what I said at that time. If I�m lucky, I hit upon a usable experience and all is well. If I�m not lucky, I get clobbered by the same sinking feeling I had originally, and I�m unable to answer the question I�m being asked. No matter how hard I try to stop it, that weird voice slips out, making me more flustered and discouraged, and so it gets harder and harder to say anything.
In �set-pattern� conversations, we manage much better; although, of course, when it comes to talking about your feelings, these patterns are no use at all. In fact, by relying on them too much you can end up saying the opposite of what you wanted to say. I swear conversation is such hard work! To make myself understood, it�s like I have to speak in an unknown foreign language, every minute of every day.
�How many
Us people with autism hear that all the time. Me, I�m always being told off for doing the same old things. It may look as if we�re being bad out of naughtiness, but honestly, we�re not. When we�re being told off, we feel terrible that yet again we�ve done what we�ve been told not to. But when the chance comes once more, we�ve pretty much forgotten about the last time and we just get carried away yet again. It�s as if something that isn�t us is urging us on.
You must be thinking: �Is he
Children with autism are also growing and developing every single day, yet we are forever being treated like babies. I guess this is because we seem to act younger than our true age, but whenever anyone treats me as if I�m still a toddler, it really hacks me off. I don�t know whether people think I�ll understand baby-language better, or whether they think I just prefer being spoken to in that way.
I�m not asking you to deliberately use difficult language when you talk to people with autism�just that you treat us as we are, according to our age. Every single time I�m talked down to, I end up feeling utterly miserable�as if I�m being given zero chance of a decent future.
True compassion is about not bruising the other person�s self-respect. That�s what I think, anyway.
Sometimes, people with autism speak with a strange intonation, or use language in a different way. Non-autistic people can sort out what they want to say in real time, while they�re having their conversation. But in our case, the words we want to say and the words we
Some of you may think we read aloud with a strange intonation, too. This is because we can�t read the story and imagine the story at the same time. Just the act of reading costs us a lot of effort�sorting out the words and somehow voicing them is already a very tall order.
More practice will help, however. Please never laugh at us, even when we�re doing a less than great job.
You normal people, you talk at an incredible speed. Between thinking something in your head and saying it takes you just a split second. To us, that�s like magic!
So is there something wrong with the circuitry in our brains? Life�s been tough for people with autism, pretty much forever, yet nobody�s really been able to identify the causes of autism. For sure, it takes us ages to respond to what the other person has just said. The reason we need so much time isn�t necessarily because we haven�t understood, but because by the time it�s our turn to speak, the reply we wanted to make has often upped and vanished from our heads.
I don�t know if this is making a whole lot of sense to you. Once our reply has disappeared, we can never get it back again.
Making sounds with your mouth isn�t the same thing as communication, right? Lots of people can�t get their heads fully around this, I think. Isn�t there a belief out there that if a person is using verbal language, it follows that the person is saying what they want to say? It�s thanks to this belief that those of us with autism get even more locked up inside ourselves.
Just because some of us can make sounds or utter words, it doesn�t follow automatically that what we�ve said is really what we wanted to say. Even with straightforward �Yes� or �No� questions, we make mistakes. It happens all the time to me that the other person misunderstands or misinterprets what I�ve just said.
Because I�m barely able to hold a conversation, fixing what�s gone wrong is beyond my powers. Every time this happens, I end up hating myself for being so useless and clamming up. Please don�t assume that every single word we say is what we intended. This makes communication between us difficult, I know�we can�t even use gestures�but we really badly want you to understand what�s going on inside our hearts and minds. And basically, my feelings are pretty much the same as yours.
For a long time I�ve been wondering why us people with autism can�t talk properly. I can never say what I really want to. Instead, verbal junk that hasn�t got anything to do with anything comes pouring out of my mouth. This used to get me down badly, and I couldn�t help envying all those people who speak without even trying. Our feelings are the same as everyone else�s, but we can�t find a way to express them.
We don�t even have proper control over our own bodies. Both staying still and moving when we�re told to are tricky�it�s as if we�re remote-controlling a faulty robot. On top of this, we�re always getting told off, and we can�t even explain ourselves. I used to feel abandoned by the whole world.
Please don�t judge us from the outside only. I don�t know why we can�t talk properly. But it�s not that we won�t talk�it�s that we can�t talk and we�re suffering because of it. All on our own, there�s nothing we can do about this problem, and there were times when I used to wonder why Non-Speaking Me had ever been born. But having started with text communication, now I�m able to express myself via the alphabet grid and a computer, and being able to share what I think allows me to understand that I, too, exist in this world as a human being.
Can you imagine how your life would be if you couldn�t talk?
The Mystery of the Missing Words
Us kids with autism, we never use enough words, and it�s these missing words that can cause all the trouble. In this example, three friends are talking about their classmate who has autism:
�Hey, she just said, �All of us�!�
�So���that must mean she wants to join in with us, yeah?�
�Dunno. Maybe she wants to know if we�re all doing it.�
In fact, the autistic girl�s �all of us� came from something the teacher had said earlier on in the day: �Tomorrow, all of us are going to the park.� What the girl wanted to find out was
Honestly, what a mysterious language us kids with autism speak!
True, we don�t look at people�s eyes very much. �Look whoever you�re talking with properly in the eye,� I�ve been told, again and again and again, but I still can�t do it. To me, making eye contact with someone I�m talking to feels a bit creepy, so I tend to avoid it.
Then where exactly am I looking? You might well suppose that we�re just looking down, or at the general background. But you�d be wrong. What we�re actually looking at is the other person�s voice. Voices may not be visible things, but we�re trying to listen to the other person with all of our sense organs. When we�re fully focused on working out what the heck it is you�re saying, our sense of sight sort of zones out. If you can�t make out what you�re seeing, it�s the same as not seeing anything at all.
What�s bothered me for a long time is this idea people have that so long as we�re keeping eye contact while they�re talking to us, that alone means we�re taking in every word. Ha! If only that was all it took, my disability would have been cured a long, long time ago��
It�s not that we don�t like holding hands, it�s just that, if we happen to spot something interesting, we can�t help but dash off and let go of the hand we were holding. I don�t even remember letting it go until I hear the other person say, �Huh�it looks like he doesn�t want to hold my hand.�
That really used to depress me. But because I can�t explain to the person why I let go of his or her hand, and since I do in fact find it hard to keep holding the hand for long, there�s not much I can do about the misunderstanding.
It�s really not a matter of whose hand I�m holding, or even of the act of holding hands itself. It�s this impulse kids with autism have to dart off to anything that looks remotely interesting: this is what we have to tackle.
�Ah, don�t worry about him�he�d rather be on his own.�
How many times have we heard this? I can�t believe that anyone born as a human being really wants to be left all on their own, not really. No, for people with autism, what we�re anxious about is that we�re causing trouble for the rest of you, or even getting on your nerves.
The truth is, we�d love to be with other people. But because things never, ever go right, we end up getting used to being alone, without even noticing this is happening. Whenever I overhear someone remark how much I prefer being on my own, it makes me feel desperately lonely. It�s as if they�re deliberately giving me the cold-shoulder treatment.
If someone�s talking to me from somewhere far off, I don�t notice. You�re probably thinking, �Same here,� yes? A major headache for me, however, is that even when someone�s right here in front of me, I still don�t notice when they�re talking to me.
�Not noticing,� however, is not the same as �deliberately ignoring.� But often people assume I must be arrogant or �retarded.� People around me always make me realize that I�m being spoken to by saying things like, �Say hello back, then, Naoki,� or, �What do you say, then?� So whenever that happens I just repeat what I�ve been told to say, like a mynah bird learning a new word. Even though I feel guilty toward the person who has spoken to me, I can�t even apologize, so I end up feeling miserable and ashamed that I can�t manage a proper human relationship.
A person who�s looking at a mountain far away doesn�t notice the prettiness of a dandelion in front of them. A person who�s looking at a dandelion in front of them doesn�t see the beauty of a mountain far away. To us, people�s voices are a bit like that. It�s very difficult for us to know someone�s there and that they�re talking to us, just by their voice.
So it would help us a great deal if you could just use our names first to get our attention, before you start talking to us.
Our expressions only seem limited because you think differently from us. It�s troubled me for quite a while that I can�t laugh along when everyone else is laughing. For a person with autism, the idea of what�s fun or funny doesn�t match yours, I guess. More than that, there are times when situations feel downright hopeless to us�our daily lives are so full of tough stuff to tackle. At other times, if we�re surprised, or feel tense, or embarrassed, we just freeze up and become unable to show any emotion whatsoever.
Criticizing people, winding them up, making idiots of them or fooling them doesn�t make people with autism laugh. What makes us smile from the inside is seeing something beautiful, or a memory that makes us laugh. This generally happens when there�s nobody watching us. And at night, on our own, we might burst out laughing underneath the duvet, or roar with laughter in an empty room���when we don�t need to think about other people or anything else, that�s when we wear our natural expressions.
Personally, I have no particular problem with physical contact, but sure, some people with autism can�t stand being hugged or touched. I don�t know why, to be honest�I guess it just makes them feel uneasy. Even the way we adjust our clothing to match the season, putting on more clothes in winter and fewer in summertime, this can be a very big deal for people with tactile issues. Acting accordingly as situations change is a tough call.
More generally, for a person with autism, being touched by someone else means that the toucher is exercising control over the person�s body, which not even its owner can control properly. It�s as if we lose who we are. Think about it�that�s terrifying!
There�s also the dread that by being touched our thoughts will become visible. And if that happened, the other person would
When I was small, I used to wave goodbye with my palm facing inward when I was told, �Wave bye-bye!� I found simple gym exercises and dancing quite impossible. The reason is that imitating movement is difficult for people with autism. Because we don�t know our own body parts so well, moving those parts of the body we can track with our eyes is our first step toward imitating movement properly.
I never understood people when they told me that I was waving goodbye the wrong way around, until one day I saw myself in a full-length mirror. That was when I realized�I was waving goodbye to myself!
Slip Sliding Away
�I can run faster than any of us!� said the Hare, boinging away.
�But we had a race a long time ago to settle this and I won,� said the Tortoise, crossly. �I�m the fastest.�
None of the other animals was at all interested. �Ah, who cares?�
But the Hare insisted on having another race, so the Tortoise finally gave in and turned up at the starting line.
The race between the Hare and the Tortoise was about to start.
�Ready, set, go!�
The Hare dashed away at terrific speed.
The Tortoise slipped and flipped over onto his back, at which all the other animals ran up to the Tortoise to see if he was all right: �Poor you, are you okay? You�d better go home and rest.�
And so they all carried the Tortoise back to his house.
The Hare reached the finish line.
Nobody was waiting but himself.
Sometimes people with autism start laughing like a hyena or appear to be having enormous fun on their own without any obvious reason for it. You must be wondering,
At times like these, we�re having �imaginings.� Or not quite imaginings, but we experience pictures or scenes in our minds that pop up out of nowhere. Maybe it�s the memory of something that made us laugh, or maybe it�s a page from a book we read.
This might be hard for you to understand. But try to see these �highs� as a stronger version of those times when you remember something funny and can�t help but chuckle about it.
We do remember what we did, when, where, who we did it with and things like this, but these memories are all scattershot and never connected in the right order. The trouble with scattered memories is that sometimes they replay themselves in my head as if they had only just taken place�and when this happens, the emotions I felt originally all come rushing back to me, like a sudden storm. This is a flashback memory.
I know I have lots of pleasant memories, but my flashback memories are always bad ones, and from out of the blue I get incredibly distressed, burst into tears or just start panicking. Never mind that it�s a memory from ages ago�the same helpless feeling I had then overflows and floods out and it just won�t stop.
So when this happens, just let us have a good cry, and then we can get back onto our feet. Maybe the racket we make will get on your nerves a bit, but please try to understand what we�re going through, and stay with us.
When I see I�ve made a mistake, my mind shuts down. I cry, I scream, I make a huge fuss, and I just can�t think straight about anything anymore. However tiny the mistake, for me it�s a massive deal, as if Heaven and Earth have been turned upside down. For example, when I pour water into a glass, I can�t stand it if I spill even a drop.
It must be hard for you to understand why this could make me so unhappy. And even to me, I know really that it�s not such a big deal. But it�s almost impossible for me to keep my emotions contained. Once I�ve made a mistake, the fact of it starts rushing toward me like a tsunami. And then, like trees or houses being destroyed by the tsunami,
Finally, finally, I�ll calm down and come back to myself. Then I see no sign of the tsunami attack�only the wreckage I�ve made. And when I see that, I hate myself. I just hate myself.
There are times when I can�t do what I want to, or what I have to. It doesn�t mean I don�t want to do it. I just can�t get it all together, somehow. Even performing one straightforward task, I can�t get started as smoothly as you can. Here�s how I have to go about things:
1. I think about what I�m going to do.
2. I visualize how I�m going to do it.
3. I encourage myself to get going.
How smoothly I can do the job depends on how smoothly this process goes.
There are times when I can�t act, even though I really, badly want to. This is when my body is beyond my control. I don�t mean I�m ill or anything. It�s as if my whole body, except for my soul, feels as if it belongs to somebody else and I have zero control over it. I don�t think you could ever imagine what an agonizing sensation this is.
You can�t always tell just by looking at people with autism, but we never really feel that our bodies are our own. They�re always acting up and going outside our control. Stuck inside them, we�re struggling so hard to make them do what we tell them.
Us kids with autism would like you to watch out for us�meaning, �Please never give up on us.� The reason I say �watch out for us� is that we can be made stronger just by the fact you�re watching.
Just going by how we respond, it�s difficult for you to tell if we�ve understood what you�re saying or not. And often we still can�t do something however often you�ve shown us how to do it.
That�s just the way we are. On our own we simply don�t know how to get things done the same way you do them. But, like everyone else, we want to do the best we possibly can. When we sense you�ve given up on us, it makes us feel miserable. So please keep helping us, through to the end.
You never notice. Really, you have no idea quite how miserable we are. The people who are looking after us may say, �Minding these kids is
Whenever we�ve done something wrong, we get told off or laughed at, without even being able to apologize, and we end up hating ourselves and despairing about our own lives, again and again and again. It�s impossible not to wonder why we were born into this world as human beings at all.
But I ask you, those of you who are with us all day, not to stress yourselves out because of us. When you do this, it feels as if you�re denying any value at all that our lives may have�and that saps the spirit we need to soldier on. 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.
What would we do if there was some way that we could be �normal�? Well, I bet the people around us�our parents and teachers�would be ecstatic with joy and say, �Hallelujah! We�ll change them back to normal right now!� And for ages and ages I badly wanted to be normal, too. Living with special needs is so depressing and so relentless; I used to think it�d be the best thing if I could just live my life like a normal person.
But now, even if somebody developed a medicine to cure autism, I might well choose to stay as I am. Why have I come around to thinking this way?
To give the short version, I�ve learned that every human being, with or without disabilities, needs to strive to do their best, and by striving for happiness you will arrive at happiness. For us, you see, having autism is normal�so we can�t know for sure what your �normal� is even like. But so long as we can learn to love ourselves, I�m not sure how much it matters whether we�re normal or autistic.
Earthling and Autisman
I was traveling with my family to Hokkaido by airplane. It was the first time I�d flown for many years, and I was surprised to find that the sensation of gravity pulling at my body was really pleasant. I hadn�t noticed this the time I�d flown before, because I was still a little kid back then. Anyway, I made up this very short story��
If only there was a planet somewhere with a gravitational pull perfect for people with autism, then we�d be able to move around freely.
What do you think I�m feeling when I�m jumping up and down clapping my hands? I bet you think I�m not really feeling anything much beyond the manic glee all over my face.
But when I�m jumping, it�s as if my feelings are going upward to the sky. Really, my urge to be swallowed up by the sky is enough to make my heart quiver. When I�m jumping, I can feel my body parts really well, too�my bounding legs and my clapping hands�and that makes me feel so, so good.
So that�s one reason why I jump, and recently I�ve noticed another reason. People with autism react physically to feelings of happiness and sadness. So when something happens that affects me emotionally, my body seizes up as if struck by lightning.
�Seizing up� doesn�t mean that my muscles literally get stiff and immobile�rather, it means that I�m not free to move the way I want. So by jumping up and down, it�s as if I�m shaking loose the ropes that are tying up my body. When I jump, I feel lighter, and I think the reason my body is drawn skyward is that the motion makes me want to change into a bird and fly off to some faraway place.
But constrained both by ourselves and by the people around us, all we can do is tweet-tweet, flap our wings and hop around in a cage. Ah, if only I could just flap my wings and soar away, into the big blue yonder, over the hills and far away!
People with autism often write letters in the air.
There are certain noises you don�t notice but that really get to us. The problem here is that you don�t understand how these noises affect us. It�s not quite that the noises grate on our nerves. It�s more to do with a fear that if we keep listening, we�ll lose all sense of where we are. At times like these, it feels as if the ground is shaking and the landscape around us starts coming to get us, and it�s absolutely terrifying. So cupping our ears is a measure we take to protect ourselves and get back our grip on where we are.
The noises that get to people with autism vary from person to person. I don�t know how we�d cope if we couldn�t cup our ears. Me too, I cup my ears sometimes, though I�ve gradually gotten used to the noises by pressing my hands over my ears less and less heavily. Some people can overcome the problem by slowly becoming accustomed to the noises, I guess. What matters most is that we learn to feel safe and secure even when the noises strike us.
In my gym class, the teacher tells me to do things like �Stretch your arms!� and �Bend at the knees!� But I don�t always know what my arms and legs are up to, not exactly. For me, I have no clear sensation of where my arms and legs are attached, or how to make them do what I�m telling them to do. It�s as if my limbs are a mermaid�s rubbery tail.
I think the reason why some kids with autism try to get hold of an object by �borrowing� someone else�s hand is that they can�t tell how far they need to extend their own arms to reach the object. They�re not too sure how to actually grab the object either, because we have problems perceiving and gauging distances. By constant practice, however, we should be able to overcome this difficulty.
That said, I still can�t even tell when I�ve stepped on someone�s foot or jostled someone out of my way. So something connected with my sense of touch might be miswired too.
�Why won�t you wear shoes?� �Why will you only wear half-length sleeves?� �Why do you always shave off or pluck out your body hair? Doesn�t it hurt?� Every time us people with autism do something that other people wouldn�t, it must make you wonder why. Do people with autism possess different senses? Or do these actions just give us some sort of kick?
To my mind, both answers are barking up the wrong tree. The reason could be that we�ve gotten into such a state that if we
If a person without autism is going through a hard time, he or she can talk it over with someone, or make a ruckus about it. But in our case, that�s not an option�we can never make ourselves understood. Even when we�re in the middle of a panic attack, people either don�t get what�s happening to us, or else they just tell us to stop crying. My guess is that the despair we�re feeling has nowhere to go and fills up our entire bodies, making our senses more and more confused.
Among people with autism, there are some who make a huge fuss when they have their hair or nails trimmed, even though it shouldn�t hurt at all. At the same time, there are people who stay very calm and collected even when they�ve got an injury that�s obviously painful.
I don�t think this is all to do with nerves and nerve endings. It�s more a matter of �inner pain� expressing itself via the body. When memories suddenly come to people, we experience a flashback�but in the case of people with autism, memories are not stored in a clear order. For those of us who are disturbed by having their hair and nails trimmed, somehow their negative memories are probably connected to the action.
A normal person might say, �Oh, he�s never liked having his hair cut or his nails trimmed, ever since he was small, and we�ve no idea why.� But the thing is, the memory of a person with autism isn�t like a number-scale from which you pick out the recollection you�re after: it�s more like a jigsaw puzzle, where if even just one piece is misinserted, the entire puzzle becomes impossible to complete. What�s more, a single piece that doesn�t belong there can mess up all the surrounding memories as well. So it�s not necessarily physical pain that�s making us cry at all�quite possibly, it�s memory.
As for people who don�t show any signs of pain, my guess is that they�re unable to keep those signs on display. I think it�s very difficult for you to properly get your heads around just how hard it is for us to express what we�re feeling. For us, dealing with the pain by treating it as if it�s already gone is actually easier than letting other people know we are in pain.
Normal people think we�re highly dependent and can�t live without ongoing support, but in fact there are times when we�re stoic heroes.
Some people with autism keep to a very limited diet, it�s true. I don�t really have this problem myself, but to some degree I can understand where they�re coming from, I think. We do this business called eating three times a day, but for some people having to eat different meals each time can be a major headache. Each type of food has its distinct taste, color and shape. Usually, these differences are what make eating a pleasure, but for some people with autism, only those foodstuffs they can already think of as food have any taste. Everything else is about as appetizing as toy food you might be served at a little kid�s �pretend tea-time.�
So why do these people experience new food this way? You could say, �Because their sense of taste is all messed up� and be done with it. But couldn�t you also say that they just need more time than the average person to come to appreciate unknown types of food? Even if they�d be happy sticking with only those foods they�re used to eating, in my opinion meals aren�t just about nutrition�meals are also about finding joy in life. Eating is living, and picky eaters should definitely be nudged toward trying different foods little by little. That�s what I reckon, anyway.
So how do people with autism see the world, exactly? We, and only we, can ever know the answer to that one! Sometimes I actually pity you for not being able to see the beauty of the world in the same way we do. Really, our vision of the world can be incredible, just incredible��
You might reply, �But the eyes we all use to look at things work the same way, right?� Fair enough, you may be looking at the exact same things as us, but
Every single thing has its own unique beauty. People with autism get to cherish this beauty, as if it�s a kind of blessing given to us. Wherever we go, whatever we do, we can never be completely lonely. We may look like we�re not with anyone, but we�re always in the company of friends.
Whether it�s hot or whether it�s cold, I always have a hard time choosing the right clothing, as well as putting extra layers on or peeling them off accordingly. Some people with autism keep wearing exactly the same type of clothes all through the year, in fact. What�s the deal here? What�s so tricky about putting on or taking off clothes as you need to?
Well�search me. It might be scorching hot, and we
I can mop the sweat off my face with my handkerchief, at least�I�m used to doing this now�but adjusting my clothing is a taller order because the situation is often changing. So I can well sympathize with those people with autism who prefer to wear the same clothes day in, day out. Clothes are like an extension of our bodies, an outer skin, and so the day-in, day-outers find it reassuring to stick to the same outfit. We feel obliged to do everything we can to protect ourselves against uncertainty, and wearing comfy clothes we like is one way of doing this.
Time is a continuous thing with no clear boundaries, which is why it�s so confusing for people with autism. Perhaps you�re puzzled about why time intervals and the speed of time are so hard for us to gauge, and why time seems such slippery stuff for people with autism.
For us, time is as difficult to grasp as picturing a country we�ve never been to. You can�t capture the passing of time on a piece of paper. The hands of a clock may show that some time has passed, but the fact that we can�t actually
Because I have autism, I know all about this and I feel it myself�believe me, this is scary stuff. We�re anxious about what kind of condition we�ll be in at a future point, and what problems we�ll trigger. People who have effortless control over themselves and their bodies never really experience this fear.
For us, one second is infinitely long�yet twenty-four hours can hurtle by in a flash. Time can only be fixed in our memories in the form of visual scenes. For this reason there�s not a lot of difference between one second and twenty-four hours. Exactly what the next moment has in store for us never stops being a big, big worry.
Quite a few people with autism find it hard to fall asleep at night. When I was little there were times when I couldn�t fall asleep either, even when it got really late. This seems strange, because we human beings aren�t nocturnal animals, right? But now I rarely have this problem. The cure might simply be time. People who can�t sleep may appear to be okay on the outside, while inside they�re exhausted.
I don�t really know what causes sleeping disorders, so all I want to ask you to do here is, if your autistic child isn�t going to sleep at a decent hour, please don�t tell them off�even if it goes on night after night after night.
Never-ending Summer
People with autism can be restless and fidgety all the time, almost to the point of it looking comical. It�s as if it�s summer for us the whole year round. Most people look pretty relaxed when they�re not doing anything in particular, but we�re always zooming off madly like a kid who�s late for school. We�re like cicadas who�ll miss the summer unless we hurry, hurry, hurry.
As autumn comes around the year�s corner, the cicadas� lives come to an end. Human beings still have plenty of time in store, but we who have autism, who are semidetached from the flow of time, we are always uneasy from sunrise to sunset. Just like the cicadas, we cry out, we call out.
Us people with autism often enjoy spinning ourselves around and around. We like spinning whatever object comes to hand, for that matter. Can you understand what�s so much fun about spinning?
Everyday scenery doesn�t rotate, so things that do spin simply fascinate us. Just watching spinning things fills us with a sort of everlasting bliss�for the time we sit watching them, they rotate with perfect regularity. Whatever object we spin, this is always true. Unchanging things are comforting, and there�s something beautiful about that.
Flapping our fingers and hands in front of our faces allows the light to enter our eyes in a pleasant, filtered fashion. Light that reaches us like this feels soft and gentle, like moonlight. But �unfiltered� direct light sort of �needles� its way into the eyeballs of people with autism in sharp straight lines, so we see too many points of light. This actually makes our eyes hurt.
This said, we couldn�t get by without light. Light wipes away our tears, and when we�re bathed in light, we�re happy. Perhaps we just love how its particles pour down on us. Light particles somehow console us. I admit this is something I can�t quite explain using logic.
Lining things up is the best fun. Watching running water is great fun, too. Other kids seem to enjoy games about pretending and make-believe, but as a person with autism I never really see the point of them.
What I care about�in fact I�m pretty obsessive about this�is the order things come in, and different ways of lining them up. It�s actually the lines and the surfaces of things like jigsaw puzzles that we love, and things like that. When we�re playing in this way, our brains feel refreshed and clear.
We just want to go back. To the distant, distant past. To a primeval era, in fact, before human beings even existed. All people with autism feel the same about this one, I reckon. Aquatic life-forms came into being and evolved, but why did they then have to emerge onto dry land, and turn into human beings who chose to lead lives ruled by time? These are real mysteries to me.
In the water it�s so quiet and I�m so free and happy there. Nobody hassles us in the water, and it�s as if we�ve got all the time in the world. Whether we stay in one place or whether we�re swimming about, when we�re in the water we can really be at one with the pulse of time. Outside of the water there�s always too much stimulation for our eyes and our ears, and it�s impossible for us to guess how long one second is or how long an hour takes.
People with autism have no freedom. The reason is that we are a different kind of human, born with primeval senses. We are outside the normal flow of time, we can�t express ourselves, and our bodies are hurtling us through life. If only we could go back to that distant, distant, watery past�then we�d all be able to live as contentedly and as freely as you lot!
This is a difficult one. I�m not quite sure what the answer is. If you figured that we must like TV commercials just because the slogans and catchphrases roll off our tongues so easily, that wouldn�t be the full story. We remember them as well as we do because they�re on so often, and sure, we dash to the TV when a familiar commercial comes on. We enjoy watching the ones we know well. How come you people without autism aren�t that keen on TV commercials? They�re on again and again and again, after all�so isn�t seeing them a bit like being visited by old and dear friends?
I�m not a big fan of TV commercials in and of themselves, but when a familiar ad comes on, I get quite excited about it. This is because when a familiar one comes on I already know what it�s talking about, and I feel sort of soothed knowing that they never last for long. The reason why we look happy to your eyes while we�re watching TV ads must be that at all other times we�re less stable and calm, and our faces are blanker. Perhaps what you�re getting when you look at us watching commercials on the TV is a brief glimpse of the Real Us.
Even at my age, I still enjoy this TV program for kindergarten kids,
People with autism get quite a kick out of repetition. If I was asked how come, my reply would be this: �When you�re in a strange new place, aren�t
What we just don�t do are disputes, bargaining or criticizing others. We�re totally helpless in these scenarios.
A Story I Heard Somewhere
There was once a girl who loved dancing and she wore red shoes. Everybody who knew her thought,
One night, when the whole world was fast asleep, she began dancing. She went:
The girl was in a state of sheer bliss.
Then, on the eighth day, this handsome young man appeared. He said to her, �Would you care to dance with me?� With that, the girl stopped dancing. She said, �Thanks, but no. I�ve just discovered something more precious than dancing.� Then, in a small house, they lived happily ever after.
Because it�s fun! We get a real kick out of numbers, us people with autism. Numbers are fixed, unchanging things. The number 1, for example, is only ever, ever the number 1. That simplicity, that clearness, it�s so comforting to us.
Whoever reads any given timetable or calendar, it�s always, always the same. You can easily understand all of them by following the same set of rules. And when it comes to our favorite things, we can memorize these as easily as if they were jumping straight into our heads. Invisible things like human relationships and ambiguous expressions, however, these are difficult for us people with autism to get our heads around.
Perhaps you�re thinking that it�s no major effort for me to write these sentences, but that wouldn�t be true at all. Always lurking at the back of my mind is an anxiety about whether or not I�m perceiving things in the same way that people without autism do. So, via TV, books and just tuning in to the people around me, I�m constantly learning about how ordinary people are supposed to feel in given situations. And whenever I learn something new, I write a short story dealing with the situation in question. This way, with luck, it won�t slip my mind.
No, I don�t dislike longer sentences. Whatever else is going on, I�m always hungry to learn about lots of different things. It really gets me down that people just don�t understand how hungry for knowledge people with autism actually are. The problem isn�t that I dislike longer sentences. The problem is that my patience wears out so quickly. I get tired so soon and lose all track of what the sentence was about. I can read simple picture books without much trouble, so when I�m alone, I tend to choose one of these. They are easy to follow and stimulate my imagination, and I never get bored with them.
I want to grow up learning a million things! There must be countless other people with autism who have the same desire, the same attitude. But our problem is, we aren�t capable of studying all by ourselves. To be able to study like other people, we need more time and different strategies and approaches. And those people who help us study, they actually need more patience than we do. They need to understand our eagerness to learn, even though from the outside we may not appear to be keen students. But we are. We, too, want to grow.
I don�t hate races, but the instant I�m conscious of the need to run fast, I find that I can�t. If I�m just running for fun with my friends, I find I can run as long as I want to�it�s as if I�m making friends with the wind. Sometimes people say that I�m very good at running away, but really it�s just that when someone�s chasing me, I find it both funny and frightening when the chaser is catching up to me. This prompts me to put on a spurt of speed, and I�m off.
The reason I can�t run well once I�m aware of needing to isn�t to do with nerves. My problem is that as soon as I try to run fast, I start thinking about how I ought to be moving my arms and legs, and then my whole body freezes up. And another reason I don�t do well in races is that I don�t really get any pleasure out of beating other people. I agree that it�s right and proper to do the best you can in a race, but this desire to beat everyone else is another matter altogether. So on competitive occasions like school sports days, the pleasure I get just by being there takes over, and I�ll end up running the race with all the urgency of someone skipping his way across a meadow.
My guess is that lots of people with autism like walking, and I wonder if you can work out why. �Because walking makes you feel good?� �Because it�s great being out in the open air?� Both these replies are true, of course, but for me the number one reason is that us people with autism love the greenness of nature. Now you might be thinking, �Oh, is that all?� However, our fondness for nature is, I think, a little bit different from everyone else�s. I�m guessing that what touches you in nature is the beauty of the trees and the flowers and things. But to us people with special needs, nature is as important as our own lives. The reason is that when we look at nature, we receive a sort of permission to be alive in this world, and our entire bodies get recharged. However often we�re ignored and pushed away by other people, nature will always give us a good big hug, here inside our hearts.
The greenness of nature is the lives of plants and trees. Green is life. And that�s the reason we love to go out for walks.
So what do
We are misunderstood, and we�d give anything if only we could be understood properly. People with autism would be suffering breakdowns over this�all the time�if we weren�t holding ourselves in so tightly. Please, understand what we really are, and what we�re going through.
We do take pleasure in one thing that you probably won�t be able to guess. Namely, making friends with nature. The reason we aren�t much good at people skills is that we think too much about what sort of impression we�re making on the other person, or how we should be responding to this or that. But nature is always there at hand to wrap us up, gently: glowing, swaying, bubbling, rustling.
Just by looking at nature, I feel as if I�m being swallowed up into it, and in that moment I get the sensation that my body�s now a speck, a speck from long before I was born, a speck that is melting into nature herself. This sensation is so amazing that I forget that I�m a human being, and one with special needs to boot.
Nature calms me down when I�m furious, and laughs with me when I�m happy. You might think that it�s not possible that nature could be a friend, not really. But human beings are part of the animal kingdom too, and perhaps us people with autism still have some leftover awareness of this, buried somewhere deep down. I�ll always cherish the part of me that thinks of nature as a friend.
The Great Statue of Buddha
When you�ve been on a trip somewhere, have you ever watched someone burst into tears for no obvious reason? Of course there
Well, it�s much the same for me. The other day I was visiting a town called Kamakura, where there�s this huge statue of Buddha. And when I saw it, I was so deeply moved that I started welling up. It wasn�t just Buddha�s majesty and dignity, it was the sheer weight of history and generations of people�s hopes, prayers and thoughts that broke over me, and I couldn�t stop myself crying. It was as if Buddha himself was saying to me, �All human beings have their hardships to bear, so never swerve away from the path you�re on.�
Everybody has a heart that can be touched by something. Crying isn�t necessarily about sadness or meltdowns or being upset. I�d like you to bear that in mind, if you would.
My mind is forever swaying, this way and that. It�s not that I want to go running off, I just can�t help dashing away to whatever place enters my line of sight. It�s really annoying for me too, because people are always telling me off about it. But I don�t know how to stop it.
So I�m not doing all this moving around because it pleases me�it isn�t even all that calming. It�s like being teleported from one place to another without knowing it�s happening. Even if someone tries to prevent me, or if something else gets in the way, it happens anyway. I sort of lose myself for a little while.
So what�s my master plan to fix this problem? I�m constantly battling this impulse to run off and, compared to how it used to be, I�m slowly getting better at controlling it, I think. But I haven�t found a really effective way to fix this problem yet. Jogging and walking refresh my body, at least, and once refreshed, I kind of feel back home inside myself. My sense of gravity is restored, too, and that calms me down.
I�ve already mentioned how I dash off as soon as I spot anything interesting. There�s a different reason for why we get lost so often, however, and I think it�s this: we don�t really know where we ought to be. You could tell us that we ought to follow someone else, or hold their hand, but the fact is that, with or without your suggestion, we�re still going to lose our way.
Simply put, people with autism never, ever feel at ease, wherever we are. Because of this, we wander off�or run away�in search of some location where we
But our uneasy, unsettled feeling doesn�t go away. I don�t think we�ll ever be able to reach our Shangri-La, however. I know it exists only in the depths of the forest or at the bottom of the deep blue sea.
Once, when I was a little kid at kindergarten, I wandered off from home and had to be picked up by the police. Back then, in fact, I used to leave home quite regularly and, as I look back from this distance, I can think of several reasons why I did it. It wasn�t because I wanted to go out for a specific purpose, like wanting fresh air. It was because�this is hard to put into words�my body moved because it was lured outside by something there.
As I was walking farther from home, I didn�t feel any fear or anxiety. It came down to this: if I didn�t go outside, then I would cease to exist. Why? I can�t say, but I
I stopped wandering off from home on the day I very nearly got mowed down by a car, because the fear of it made a deep impact on my memory. So when something drastic enough happens, I think we can rein in this habit of wandering off. Meanwhile, please keep an eye out for us��
The reason people with autism repeat actions isn�t simply because they enjoy what they�re doing. Watching us, some people can get shocked, as if we were possessed. However much you like doing something, it would normally be impossible to keep doing it as often as we do, right? But the repetition doesn�t come from our own free will. It�s more like our brains keep sending out the same order, time and time again. Then, while we�re repeating the action, we get to feel really good and incredibly comforted.
From our standpoint, I feel a deep envy of people who can know what their own minds are saying, and who have the power to act accordingly. My brain is always sending me off on little missions, whether or not I want to do them. And if I don�t obey, then I have to fight a feeling of horror. Really, it�s like I�m being pushed over the brink into a kind of Hell.
For people with autism, living itself is a battle.
Kids with autism do what we�re not supposed to do again and again, however many times you�ve told us not to. We understand what you�re telling us okay, but somehow we just repeat the sequence. This happens to me, too, and I�ve thought about how the sequence gets imprinted. First I do some action or other that I�m not allowed to; then something else happens as a result; and then I get told off for it; and last, my impulse to re-create this sequence trumps the knowledge that I�ve been told not to do it, and I end up doing it again. The next thing I know, I feel a sort of electrical buzz in my brain, which is very pleasant�no other sensation is quite the same. Perhaps the closest thing is watching your very favorite scene on a DVD, looping on auto-repeat, over and over.
Still, we shouldn�t do what we shouldn�t do. How, as thinking beings, can we break out of this loop? This is a big project. I work hard to solve the problem, but this work costs so much energy. Maintaining this grip on myself is really, really, really tough. It�s at these times that we need your help with patience, guidance and love. Of course we want you to stop us from doing what we�re not supposed to do, but we also want you to understand what we�re going through at these times.
We don�t obsess over certain things because we like it, or because we want to. People with autism obsess over certain things because we�d go crazy if we didn�t. By performing whatever action it is, we feel a bit soothed and calmed down. But then whenever someone tells me off for doing the action, or even prevents me from repeating it, I feel utterly miserable. I never actually wanted to do it in the first place, and now I end up hating myself even more for not being able to control my own actions. Whenever our obsessive behavior is bothering other people, please stop us right away, whatever way you can. The person who�s suffering the most is the one who�s causing all the headaches for everyone else�that is, the one with the autism. Even though it looks as if we�re frolicking about and having the best time, inside we�re aching and hurting because we know we don�t even have control over what our own bodies are doing.
All that said, when our obsessive behavior isn�t actually bothering anyone, I�d ask you just to keep a quiet eye on us. It won�t last forever. One fine day, however hard we have tried to will ourselves to stop before, the obsessive action suddenly stops itself, without warning�like, �How come?� Somehow our brain flashes up a GAME OVER signal. The sign works like when you�ve just guzzled down an entire bag of sweets. The need to obsess about whatever it was is all used up. When that sign appears, I feel set free, like someone who can finally put aside all of last night�s dreams.
The problem is, how to help people with autism stop their obsessive actions in cases when they
The Black Crow and the White Dove
There was once a black crow who liked a certain song called �The Seven Little Crows,� which began,
One day, a white dove who had lost her way met the black crow. She asked, �Where does this path go?� Then the white dove stared down at the ground, looking lonely.
The black crow wondered what was wrong, and asked, �What�s the matter?�
On the point of tears, the white dove said, �I�ve been searching for the path to happiness for a long, long time, but I still can�t find it anywhere. And I�m supposed to be the bird of peace, too���
The black crow was surprised to learn that even a bird as beautiful and as loved by everyone as the white dove nonetheless had deep problems to worry about. His answer was this: �But all paths are one connected path.�
The white dove looked taken aback by this unexpected answer. But after a time, she smiled. �How about that? So the path I�ve been searching for all this time is the path I am already on.� In excellent spirits, the white dove flew off, up into the blue sky. Then the black crow, too, turned his head skyward, then flapped his wings vigorously, and away he flew. And the black crow looked no less perfect against the deep blue than the white dove.
People with autism are sometimes unable to move on to their next action without a verbal prompt. For example, even after we ask for a glass of juice and are given it, we won�t actually start drinking until someone�s said, �Enjoy� or �Go ahead and drink, then.� Or even after the person with autism has announced, �Right, I�ll hang the laundry now,� he won�t get started until someone has said back, �Okay, that�s great.�
I don�t really know why some people with autism need these cues, but I do know that I�m one of them. Since we already know what we�ll be doing next, surely we should just be able to get on with it unprompted, right? Yes, I think so too! But the fact is, doing the action without the cue can be really, really tough. In the same way as you don�t walk across the street until the light turns green, I can�t �switch on� the next action until my brain receives the right prompt. Doing the next action without obeying �the prompt rule� is terrifying. It�s enough to make me lose the plot completely.
Once we�re through the terrifying phase, we can, bit by bit, become used to the idea that doing things without the prompt is possible. But getting to that point isn�t something we can do alone�as you can tell, by the mega-fuss we make every time. We cry, we scream, we hit out and break things. But still, we
My body�s always moving about. I just can�t stay still. When I�m not moving, it feels as if my soul is detaching itself from my body, and this makes me so jumpy and scared that I can�t stay where I am. I�m always on the lookout for an exit. But even though I�m forever wanting to be someplace else, I can never actually find my way there. I�m always struggling inside my own body, and staying still really hammers it home that I�m trapped here. But as long as I�m in a state of motion, I�m able to relax a little bit.
Everyone tells people with autism, �Calm down, stop fidgeting, stay still,� when we�re busy moving around. But because I feel so much more relaxed when I
I understand that any plan is only a plan, and is never definite, but I just cannot take it when a fixed arrangement doesn�t proceed as per the visual schedule. I understand that changes can�t always be avoided, but my brain shouts back,
Observing that the new change can also be shown on the schedule is beside the point, I�m afraid. The message I want to get across here is: please don�t use visual things like pictures on our schedules, because then the activities on the schedules, and their times and timings, get imprinted too vividly onto our memories. And when that happens, we end up stressing ourselves over whether what we�re doing now is or isn�t matching up with what was on the schedule. In my case, I end up checking the time so often that I�m no longer able to enjoy what I�m doing.
People who don�t live with autism often think that the rest of us won�t be able to understand the plan for the day just by listening. But give it a try, and although we might ask you the same questions over and over, we will get the hang of it, and ask you less and less. Sure, this will take time, but I think it�s easier for us in the long run. Of course, when it comes to explaining the order that you do certain actions in, or instructions about how to make such-and-such an object, visual aids, like pictures, can help us a lot. But being shown photos of places we�re going to visit on an upcoming school trip, for example, can spoil our fun.
I don�t know if you can understand this one. Panic attacks can be triggered by many things, but even if you set up an ideal environment that gets rid of all the usual causes for a given person, we would
One of the biggest misunderstandings you have about us is your belief that our feelings aren�t as subtle and complex as yours. Because how we behave can appear so childish in your eyes, you tend to assume that we�re childish on the inside, too. But of course, we experience the same emotions that you do. And because people with autism aren�t skillful talkers, we may in fact be even more sensitive than you are. Stuck here inside these unresponsive bodies of ours, with feelings we can�t properly express, it�s always a struggle just to survive. And it�s this feeling of helplessness that sometimes drives us half crazy, and brings on a panic attack or a meltdown.
When this is happening to us, please just let us cry, or yell, and get it all out. Stay close by and keep a gentle eye on us, and while we�re swept up in our torment, please stop us from hurting ourselves or others.
I think that people with autism are born outside the regime of civilization. Sure, this is just my own made-up theory, but I think that, as a result of all the killings in the world and the selfish planet-wrecking that humanity has committed, a deep sense of crisis exists.
Autism has somehow arisen out of this. Although people with autism look like other people physically, we are in fact very different in many ways. We are more like travelers from the distant, distant past. And if, by our being here, we could help the people of the world remember what truly matters for the Earth, that would give us a quiet pleasure.
I wrote this story in the hope that it will help you to understand how painful it is when you can�t express yourself to the people you love. If this story connects with your heart in some way, then I believe you�ll be able to connect back to the hearts of people with autism too.
I�m Right Here
Shun used to think that he knew himself very well, but from that day on he was no longer sure.
�I�m back!�
Shun was relieved to get back home, safe and sound at last. His mom was busy preparing supper as usual. Shun opened the fridge and spoke to his mom while he took out a carton of juice. �Hey, Mom, today I��� Then Shun�s words just dried up. She was just standing there. Apron on, pan in hand, her hair and clothes the same as they were when Shun had left home earlier, but still, Shun couldn�t move a muscle.
Shun found himself in a park, with no memory of how he�d arrived there. Even though it was cold, his body was soaked in sweat. He was exhausted.
With no clear destination in mind, Shun carried on walking. Nobody else was around. Maybe all the people were in their houses. However lonely Shun might have felt, he didn�t want to see anyone, not even his friends.
But it looked as though his house was in complete darkness. Shun�s dad was supposed to come home from work early that day, so Shun wondered where his parents could have gone. At the same time, he felt relief to be back.
Footsteps drew nearer.
���or he thought he did, but her arm wasn�t there.
�Ah, so here you are.� Shun heard a voice and looked up. Standing there was the old man he�d met outside the supermarket. He was looking down at Shun with a kind face. �You�re all right. You�re all right. Let�s go back together.� The old man took hold of Shun�s hand.
Shun just looked at the old man.
Softly, the old man told Shun, �You don�t belong to this world anymore.�
Shun didn�t have a clue what he was talking about.
�Shun,� the old man said, �you didn�t notice the moment that you died. On your way to the supermarket, I�m afraid you were hit by a car that ran the red light.�
The memory of the scene slowly returned to Shun.
Shun cried, and he kept on crying.
How much time had gone by? Nobody can cry forever, after all. By and by Shun�s tears dried up, but his mind was still blank. The old man spoke: �Righto. What say we go back now?�
Shun�s eyes started filling up once again.
The old man motioned to Shun and began walking, and, as if drawn after him by an invisible cord, Shun followed. The old man strode out toward the west.
The old man put his arm around Shun�s shoulder and replied matter-of-factly: �We�re off to Heaven, of course.�
�Oh. I�ve, um���never been to Heaven before.�
The old man laughed out loud. �Obviously.�
The Path to Heaven.
The old man snorted out a laugh.
So Shun snorted out a laugh, too.
�Well, you finally smiled about something,� said the old man. �Then the Path to Heaven begins right here.� Serenely, he raised both his hands toward the sky. He seemed to be saying something, but Shun couldn�t catch what it was.
�What d�you reckon?� said the old man. �Time to be off?�
Shun grew afraid again.
The old man noticed. He gave Shun a concerned hug. �There�s nothing to worry about. You�ll only be gone for an instant.�
Down in his deep and dreamless sleep, Shun was thinking,
This was too much, and Shun lost his head, forgot that he was in the presence of God and started freaking out.
�Oy, oy, oy, there�s no need for that,� said God. The voice seemed vaguely familiar to Shun, as if he�d heard it long ago. �You�ll hardly be needing your body now that you�re dead, will you? All the things that used to tie you down and hold you back, they�ve gone now.�
�Absolutely nothing�s going to happen to you, because�well, look around you�you�ve gone to Heaven.�
�For the time being, do whatever you wish,� said God. �I dare say you�re still very much attached to your last life, and still have unfinished business to chew over. But you�ll come to understand how things stand, by and by.� And with that, God�s outline began to waver and vanish like mist dissolving into more mist.
For a while, Shun stayed where he was.
She did not turn around for him.
Shun�s final hope was completely dashed. Downcast, he went around to stand in front of his mom so he could at least take a proper look at her face. She looked so sad and crushed in her black clothes. In his mind, Shun apologized to her.
Between Shun and his mom a subtle breeze flowed. Her hand touched his body, the same body she apparently couldn�t see because it wasn�t there. And Shun felt the same warmth he used to feel back when he was very small, when his mom gave him a cuddle.
Shun�s dad came in from the living room. �Hi. What are you doing?�
�Somehow,� replied Shun�s mom, �I feel Shun�s in here.�
�Shun�s always with us. Always.�
Shun wasn�t sure quite what to think of this.
Shun was back in the place called Heaven. Space was really quiet. All alone, Shun drifted away in his thoughts. He didn�t know what to think about himself anymore. He had never imagined that after he died he would be so utterly alone.
�You must be the new one, right? Hi. I�m Kazuo.�
Shun was delighted. �Brilliant! I thought there was nobody but me.�
�You can�t make us out yet, but there are as many people around here as there are stars,� said Kazuo. �If you wish it, you�ll be able to talk to us�any of us�whenever you want. This world is beyond time, outside of space. Here is perfect freedom. I�ve been living here in Heaven for eighty years, y�know.�
�I don�t know what to do here,� said Shun. �You say we have perfect freedom, but actually���there�s nothing here.�
Kazuo just laughed. �You ought to do the things you couldn�t do when you were still alive.� With that, Kazuo slipped away somewhere.
Shun was getting used to life in Heaven now, and he had made a lot of friends, as Kazuo had said. Everyone was kind, and there were no barriers of language, ethnicity or era. People lived so peacefully here that it was difficult to believe how much they had fought and quarrelled when they were alive. Shun had never dreamed that owning nothing could be so blissful. He had also, by now, done many of the things that he couldn�t during his lifetime. He�d visited every corner of the Earth. He�d spoken with many people in Heaven. Everything was fresh and exciting.
Sometimes Shun visited his parents� home too. It was sad that he couldn�t speak with them directly, but it made him happy just to see their faces and listen to them talk about him. This was enough for Shun to stay brave and go on.
It was on a day like this when Shun was visiting his home that his mom looked strange. She was miserable, and didn�t seem to be eating. Staring at the photograph of her son, tears were in her eyes. �Shun, I don�t think I can go on living like this, without you here. I want to be where you are.� Saying this, she collapsed on the table, facedown and weeping.
Shaken, Shun too started to cry.
On his return to Heaven, Shun thought about his parents every single day.
Shimmering out of the mist, God materialized. �I believe you called.�
�My parents are still mourning my death, but there�s nothing I can do for them, and it�s just���unbearable.�
God nodded as he listened. �Well, I do understand how you must be feeling. Thing is, that�s life, isn�t it? But your mom and dad will be able to see you again here, when their own numbers are up.�
Shun understood God�s words, but he still didn�t feel any better. �It�s too much for my parents to bear, though. And it�s impossible for me to live happily here in Heaven, knowing the pain that my parents are going through!� Shun found he was almost shouting.
�Mmm���it is a tricky one. Nowhere�s as pleasant as Heaven��� God was deep in thought. �Well, I�m not saying there
Hearing this, Shun�s heart leapt with joy. �Really? Can you honestly do that?� His voice was ragged with excitement and his heart beat faster.
But, as if reading Shun�s mind, God quickly went on: �There is, however, one small catch.� God looked Shun straight in the eye. �Once you are born, you won�t be Shun any longer. All your memories of Shun, of
From Heaven, Shun stared down at the blue Earth.
A whole month had passed, but Shun still hadn�t made up his mind. He hadn�t gone back home, not even once. Life in Heaven suited Shun well, and the thought that he would be seeing his parents here someday gave him a degree of comfort.
By and by, a year went by since Shun had died.
On the following Sunday, Shun revisited his old home for the first time in a long time. His mom wasn�t in the house, however. He was wondering whether she had gone out shopping when the phone rang. Shun�s dad came to answer it. �I see,� he said, �I�ll be right over.�
Shun�s dad�s voice was an empty husk. He dashed out of the house and Shun followed, with an ominous feeling.
���They arrived at the hospital. Shun�s dad wore a grim look.
Lying on the hospital bed was a wrung-out and sickly-pale Mom. She almost looked like a stranger. Shun�s dad, too, looked utterly exhausted.
Shun himself was too gutted to make a sound.
The doctor concluded his examination and spoke. �Based on her current condition,� he said, �I�m afraid there�s no guarantee that she�ll pull through.�
Before the doctor had even finished, Shun rushed up to his mom and shouted, �Mom, you mustn�t die yet! Don�t die! Please, please, please! Just���
Even though Shun�s mom couldn�t hear his voice, in her delirium she called out his name.
Shun couldn�t bear the pain anymore. It was strangling him, almost.
Shun made up his mind.
He summoned up every ounce of courage, but spoke calmly: �Please, God, I want you to return me to my mother.�
In the air, many-colored orbs appeared, and inside each one was a tiny gold sphere. Then, before Shun�s eyes, one by one, the orbs popped��
Chiming��
Chiming��
Chiming��
Shun thought he recognized the bell-like sound, from a long, long time ago.
In her hospital room, Shun�s mother woke up from her sleep.
Shun�s father was anxious: �How are you feeling?�
But she didn�t make any reply.
�Look, if you�re feeling bad, I�ll fetch the doctor.�
But just as he was about to hurry off, Shun�s mother opened her mouth to speak: �Shun came to see me���in my dream.�
Shun�s father held her hand. �That�s nice, love.�
She went on, with tears in her eyes, �Shun told me, �I�m right here, always, so you�re not to cry anymore, okay?� He looked terribly unhappy, because of, because of the state I�m in. I need to pick myself up, and, and���put all the pieces back together again.�
Shun�s father nodded. �Yes. Shun
At the window, the first snow of the year was falling lightly. The snow crystals had formed from Shun�s tears, and were God�s proof that a boy called Shun had once lived in this world.
�Look,� said Shun�s mother. �It�s snowing. It�s beautiful.�
�First snow,� said Shun�s father. �He always did love the snow, didn�t he?�
Five years came and went. As had been promised, in the year after Shun�s decision, a new baby had arrived in Shun�s family. She was a girl, and was named �Nozomi� to signify �Hope.� Nozomi was due to start kindergarten that spring.
�Hang on, Nozomi!� her mom called out. �Wait for me!�
�I�ll run ahead a bit, Mommy,� Nozomi called back as she ran.
�Are you okay?� asked a man in a red hat. �Hey, you�re the one who���
�Do you know me?� asked Nozomi, curiously. �Who are you?�
The man hunkered down on his heels: �Are you back here already? This here old man�s an angel, believe it or not.�
Nozomi thought this was a bit suspect, because angels are supposed to have wings and live in Heaven. �Oh no you�re not.� She stared back at the old man with her big round eyes.
A cheerful laugh escaped him. �Anyway, are you having a content enough life?�
Finally, Nozomi�s mom caught up with her daughter, out of breath. �What are you up to now?�
�Talking to him.� Nozomi turned back, but there was nobody there. �Oh. Where did he go?� Nozomi looked around. �There was this funny old man���he said he was an angel.�
�I�ve told you not to talk to strangers,� Nozomi�s mom said, a little sharply.
�Anyway,� said her mother. �Let�s get on with the shopping, shall we?�
�All right, all right. But you�re going to scoff them both down, I bet.�
�That�s because he says I can have his.�
�Lucky you to have such a nice brother.�
On their way back from the supermarket, Nozomi�s mom was thinking about Shun.
Nozomi started running off again. �Mommy! Let�s go and see the cherry trees that my brother used to love.�
Afterword
I hope that by reading my explanations about autism and its mysteries, you can come to understand that all the obstacles that present themselves don�t come from our selfishness or from ego. If all of you can grasp this truth about us, we are handed a ray of hope. However hard an autistic life is, however sad it can be, so long as there�s hope we can stick at it.
And when the light of hope shines on all this world, then our future will be connected with your future. That�s what I want, above all.
Contents
Introduction
Preface
The Mystery of the Missing Words
Slip Sliding Away
Earthling and Autisman
Never-ending Summer
A Story I Heard Somewhere
The Great Statue of Buddha
The Black Crow and the White Dove
Foreword
I�m Right Here
Afterword
A Note from the Illustrators
The book was extremely moving for us and we found the way Naoki sees the world, despite his difficulties, inspiring.
About the Author
NAOKI HIGASHIDA was born in 1992 and was diagnosed with autism at the age of five. He graduated from high school in 2011 and lives in Kimitsu, Japan. He is an advocate, a motivational speaker, and the author of several books of fiction and nonfiction.
About the Translators
KA YOSHIDA was born in Yamaguchi, Japan, and majored in English poetry at Notre Dame Seishin University.
DAVID MITCHELL is the author of the international bestsellers
KA Yoshida and David Mitchell live in Ireland with their two children.
About the Illustrators
KAI AND SUNNY are a multidisciplinary duo whose work appears in many arenas of art. Their intricate, natural and sometimes sinister style has led them to collaborate with Alexander McQueen and to design the jackets of several of David Mitchell�s books, and has won them numerous accolades, including a 2012 D&AD design award. The artists have exhibited internationally, including at Haunch of Venison London, and have recently been included in the Victoria and Albert Museum print archive collection. The duo are currently exploring natural forms in large-scale monotone prints.