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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.
Naoki Higashida reiterates repeatedly that no, he values the company of other people very much. But because communication is so fraught with problems, a person with autism tends to end up alone in a corner, where people then see him or her and think, Aha, classic sign of autism, that. Similarly, if people with autism are oblivious to other people’s feelings, how could Naoki testify that the most unendurable aspect of autism is the knowledge that he makes other people stressed out and depressed?
The conclusion is that both emotional poverty and an aversion to company are not symptoms of autism but consequences of autism, its harsh lockdown on self-expression and society’s near-pristine ignorance about what’s happening inside autistic heads.
The three characters used for the word “autism” in Japanese signify “self,” “shut” and “illness.” My imagination converts these characters into a prisoner locked up and forgotten inside a solitary confinement cell waiting for someone, anyone, to realize he or she is in there.
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.
Our feelings are the same as everyone else’s, but we can’t find a way to express them.
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.
Can you imagine how your life would be if you couldn’t talk?
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
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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. This is why it’s hard for us to stay around other people. This is why we often end up being left on our own.
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.
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!
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.
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.
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.
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.
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.
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.
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.
how we perceive them appears to be different. When you see an object, it seems that you see it as an entire thing first, and only afterward do its details follow on. But for people with autism, the details jump straight out at us first of all, and then only gradually, detail by detail, does the whole image sort of float up into focus.
Time is a continuous thing with no clear boundaries, which is why it’s so confusing for people with autism.
The hands of a clock may show that some time has passed, but the fact that we can’t actually feel it makes us nervous.
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.
Unchanging things are comforting, and there’s something beautiful about that.
Perhaps we just love how its particles pour down on us. Light particles somehow console us.
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.
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.
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.
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.
I’ll always cherish the part of me that thinks of nature as a friend.
“All human beings have their hardships to bear, so never swerve away from the path you’re on.”
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 had to keep walking, on and on and on. Turning back was not permitted, because roads never come to an end. Roads speak to us people with autism, and invite us onward.
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.
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.