As I lay drowsing, the old man would sing lullabies and gently pat my back. It was embarrassing to be treated like a baby, but as my face untwisted itself and relaxed, the old man watched me contentedly. He took care of me in other ways too. He changed my clothes, he fed me. When had he become so kind, I wondered? We’d talk about this and about that and time passed quite pleasantly. One day, the old man asked, “Are you feeling all right?” and I nodded a yes, but my body felt heavy and dull and once again sleep dragged me under.
The old man who, until recently, had been surly and blunt and angry with me all the time, was now cracking jokes and trying to get me to smile. When he was a kid, the old man must have been quite an expert at making paper airplanes. He made one for me, too. “Hey—watch this…” and as I watched, the paper airplane glided by. I followed it with my unblinking gaze. The old man threw the plane over and over again, and when we were finally finished, he placed it in my hands. I glimpsed the shadow of a child and heard a boyish “Yay!” and a murkiness clouded my head. The old man turned away and the door shut behind him. Thunk.
—
Around midnight, I was shaken awake. The old man was there again, tears welling up in his eyes. I stared back at him, astonished. He buried his face in mine. Why so sad, you poor old thing? There there now, I’m here, I’ll take care of you. Love and only love makes whole the hearts of those made desperate by loneliness. You see, I understand this better than anyone. The old man clasped my hands. They were warm. I couldn’t help but feel that I had held these hands a long time ago. That’s right, you did, that’s right. My sense of self closed down and I sank into a place of perfect darkness, far beyond the reach of others. There we stayed until the end of the night. The old man never once left my side.
Without warning, I was seized by severe pain, all over my body. I could hardly breathe. What do I do? I looked to the old man for help. He held me and wept. My cheeks were damp with the old man’s tears, tears like cold rain. My eyes focused on his face, and now came the moment…My brain—long since stopped—began powering up again; and my memory—so muddy for so long—now reactivated. Zap. Yes, it all made sense, and as everything came back to me, I understood who the old man was. He isn’t the old man. Not by a long shot! I have it now. This person is…
This person is…
My son. Crying, like he can’t keep a lid on the surge of what he’s feeling. My own heart was thumping. Why didn’t I recognize him until now? I felt wistfulness, I felt acute pain, I felt gouged out. My son’s mouth was opening and closing. He was saying something to me, but his words didn’t reach me, my ears didn’t hear. I placed my trembling hand on the crown of my son’s head.
My own son. Crying.
—
It was all a journey through memory, you see.
It was all a journey made of memories.
A journey of memory.
—
I couldn’t believe I’d forgotten my own father was dead, even though he passed away so very long ago. I’m sorry, I tried to tell my son, but the words wouldn’t come out. I wanted to say them, but they wouldn’t come. I heard a rustling sound and a girl was at my bedside. She patted my hand. My hand was wrinkled, like a withered branch. It came to me now that the young girl I had met before was my own dear granddaughter. Gathered in the room were also the caregivers who had been looking after me. One or two were dabbing the corners of their eyes with their work aprons. Others were cupping their mouths with their hands, like they understood I was ready to depart, but were uncertain what to do next. My breathing grew staccato. My jaw thrust up and out. The sound of a death rattle. My eyes welled up, my tears mingling with my son’s. My consciousness was fading away. “Dad? Dad!” My son’s voice was unearthly. Don’t go!
—
By and by, my eyes looked upon nothing.
Upon a world devoid of anyone.
Am I all there is now?
Thinking back, I thanked my son with all my heart for caring for me and tending to my needs. From out of the distance, a person in gold slowly approached. She was beautiful. My wife, who died several years ago. I followed her along a path of light, resolving to let what would be, be, and to follow the path to wherever it led.
Up ahead, utter darkness spread and grew.
There was no turning back, but still I hesitated.
A pale hand reached toward me.
Straightaway, I knew whose it was.
Mom…
I raise both my arms.
I’m lifted.
Up floats my body.
This is the end of my journey.
There are times when I wonder where this disability called “autism” comes from. Could it have been created, I wonder, by humankind itself? I can’t help but feel that some imbalance in this world first caused neuro-atypical people to be needed and then brought into being. This isn’t to say that all of us are delighted to be the way we are all the time, of course. But I refuse to accept it when people view us as incomplete or partial human beings; I prefer to believe that people with autism are every bit as whole as anyone else. We might be different from the majority in diverse ways, but why are these differences negative things?
Just as everyone has a heart, so everyone with autism possesses an array of feelings: real, if invisible feelings. Even among people who can speak, shyness or unwillingness aren’t the only reasons why some don’t reveal everything about themselves. To display your emotions is, after all, to put your whole self up for scrutiny. Perhaps total exposure of the self is not even possible. Emotions can be unfathomable things—and therefore hidden, even to the self. Yet emotions—as everyone surely knows—are also what make us human.
It is often said that we people with autism lack empathy and any understanding of other people’s emotions. In my view, however, people with neurotypical brains aren’t so fantastic at getting to grips with our emotions, either. Anyway, there are times when I can’t help but wonder if not being able to divine the inner feelings of the people around us is, in reality, the debilitating problem it’s cracked up to be. Shouldn’t how we feel inside of ourselves be at least as important? How much use can we really be for other people unless we first find the headspace for questions about ourselves—What are my priorities now? or How was I feeling when such-and-such a thing happened? or Am I on the right path through life?—and the answers. Some people with autism might not yet be fully able to understand themselves. Some might not understand others. Some might not wish to try to understand. Sometimes a situation occurs when I lose my capacity for patience, even though I fully understand why the situation has come about. Some onlookers might tell me, “You’re not patient enough—just show a little endurance!” But how can degrees of patience be measured, exactly? Mastering emotions can be so overwhelmingly taxing that I sometimes wonder, Am I wholly to blame if I can’t handle this? Our world would improve if the neurotypical majority could try to empathize a little better and a little more often with people like me who “lack endurance.”
The word for “autism” in Japanese—jiheisho—conveys an image of people locking themselves up inside themselves. This is misleading. People with autism aren’t good at interacting with others, for sure, but our hearts and minds are always open and ready to receive. If we were truly clammed shut inside ourselves, we wouldn’t be coming out with our weird utterances or be prone to panic attacks. I take these phenomena as proof that our emotions exist and are trying to exhibit themselves. Some people might not care either way whether the emotions of people with autism are locked away or not, but indifference doesn’t help us. The neurotypical public needs to know that the failure of people with autism to communicate doesn’t stem from inner self-imprisonment: it stems from a failure of others to see that we are open and receptive. To venture out into the world requires help from other people. Please lend us that support as we strive to live in society.
I always think of the loneliness of nonverbal people with autism as being like the darkness before the
dawn. Hope might be just around the corner, but we can’t imagine that the night will ever end. In general, people just don’t understand how lonely nonverbal people with autism can be. When I stop and think about it, I see that everyone is kind of alone from the day they’re born until the moment they die. People with whom we can share all our days and thoughts don’t actually exist. It’s to nullify this essential loneliness that people connect with others, I think…Meaning that nonverbal people with autism, who can’t make these connections, are probably the loneliest souls of all.
Looking at it another way, however, if we accept the idea that human beings exist in isolation, then we nonverbal people with autism really aren’t so unique. Memories remain, equally and evenly, whether you’re a solitary person or not. The heart treasures the memory of giving and receiving love, whether you can connect with others via language or not. Maybe we’ll only discover whether our lives were truly lonely when we’re on our deathbeds.
Some of you might be concerned that people with autism have nobody to share their feelings with. Because we can’t talk, it’s kind of inevitable that we can’t make our innermost feelings known easily, if at all. That might be the sad reality, but I don’t think it calls for all-out despair. Why? Because we “nonverbals” have a friend who lives inside us. Inhabiting my mind is a person who is Me and yet isn’t Me. I talk to my other me as if he were an old friend, both when I’m happy and when I’m sad. This is why it’s especially important never to hate ourselves. Once you start hating yourself, this old companion draws away. It’s not easy to maintain your self-esteem if you’re constantly feeling removed from your ideal self.
So. Please go ahead and tell us nonverbals “I like you” or “I love you” whenever the fancy takes you. When someone tells you that, it becomes a whole lot easier to like yourself.
To be able to say about the past,
“It can’t be helped,” takes a certain
maturity of mind. At long last
I’ve arrived at the point where
I, too, can think: “You know?
That simply can’t be helped.”
For many, “It can’t be helped”
might seem like a surrender.
For me, it signifies hope.
Back when I couldn’t think this way,
I would obsess instead and
meltdowns would take over.
My “It can’t be helped” speaks
of a future; a future that says,
“You know? Things are okay –
as they are.”
Some people with autism go into a meltdown at the very sight of someone else getting a major scolding. Because of this, neurotypical people arrive at the conclusion that we hate the sight of anyone else getting into trouble and being shouted at. My take on this, however, is that the real reason the person with autism is shaken up so badly is because they are experiencing the scene as one where they are getting blamed for their own flaws and defects. I don’t mean that he or she is suffering a flashback or that there is any confusion over who is in trouble. Nor do I think that any meltdown is rooted in an inability to help their friend in trouble, or arising from empathy. My theory is that witnessing the anger is a trigger for a panic attack, which then snowballs into a full meltdown as the neuro-atypical onlooker gets trapped in a spiral of self-loathing for having had a panic attack in the first place. Nobody’s accusing them of anything at all, but they nonetheless experience blame and suffer the full stress. As for the reason why the person being told off is being told off? I suspect it rarely enters the equation.
Even when somebody is laughing their head off in front of me, I find it very hard to laugh along with them. It’s not that I fail to find what they’re laughing at funny: it’s that I literally can’t do it, because the moment I see someone start laughing, I forget to join in—I become entranced by the sight of the other person’s laughing face. Then, when I’m not looking at the laughing person, I become ensnared by the sound of them laughing. In this way it slips my mind that I ever wanted to laugh. Not being able to laugh while everyone else is falling about the place is isolating enough, but what makes me feel even lonelier is that my inability to laugh along with others leads people to assume that I don’t share their feelings or humor.
There are other times when I find the difference between an angry person’s face and their normal face utterly hilarious. I might even want to see the furious expression again so badly that I burst out laughing—despite the anger this generates. Over-the-top scoldings definitely backfire in my case.
It can be tricky, I guess, to make people with autism like mine understand why they are being told off, especially when we’re very young. The scene in which we did something wrong simply doesn’t mesh with the scene in which we’re being reprimanded. No doubt it varies from person to person, but I suggest that if a neuro-atypical child has done something wrong, the best course of action is just to point the misdemeanor out. Coolly and calmly.
When I was a small boy, I used to think I could catch up with everyone else simply by refusing to quit. But as I grew up, I came to understand that, because of my autism, there are some things that other people do which I will never master, no matter how hard I try. The memory of how this realization wounded my spirit remains in my heart like a thorn that cannot be extracted. I assumed this wound would be with me forever because damage done in the past cannot be remedied.
By tackling challenges one by one, however, I’ve grown to be able to do a number of things that I couldn’t do when I was young, and nowadays I’m a lot sunnier. When I was younger only I knew how miserable I was and I’d curl up under my stone. People would try to comfort me, telling me, “Hey, it’s not such a big deal”—but for me, it really was a big deal. These days, however, I can look back at those scenes and agree: no, it wasn’t the end of the world. My wrongheadedness caused me to misinterpret what the people watching over me were saying.
It turns out that wounds in the memory can be remedied, after all. How great it felt to draw that thorn out of my heart.
I often cause trouble for other people. This sometimes makes me miserable. But however inconsolable I get, I usually find that by the following day the wound has pretty much healed over. It’s thanks to this that I can carry on and function as normal. Whatever it was that happened, my family just acts as if nothing out of the ordinary had occurred. My family’s attitude means that the only thing I need to be concerned about is myself and my attitude. Since I’ve reached adulthood, I’ve come to appreciate how lucky I am to live in an environment such as the one my family gives me. While we can often overcome our own hardships, doing something about the troubles of other people is a much taller order. But when I hear the laughter of my family I feel this bubble-like, evanescent sensation—it’s like when I’m entranced by a really great picture book I love, set in a distant land, beyond borders. Joyful memories warm my heart even now, like the lullabies heard long ago. They might be buried deep inside me but they’re there and they’re priceless and life without them would be impossible.
When the song “The Only Flower in the World” by the J-Pop band SMAP was a monster hit, the message I got from the lyrics was that everyone wants to bloom in their own unique way. Speaking for myself, however, I don’t want to be a one-of-a-kind “Only Flower in the World”; I’d prefer to be the kind of flower you can find all over the world, in any old place. The title of the song drips with such melancholy! However beautiful it was, however much adoration it received, wouldn’t “the only flower in the world” be unendurably lonely? Maybe the beauty of a flower exists only when there’s an observer there to admire it, but to my way of thinking it’s actually the commonest wildflowers, weeds like dandelions which you can find the world over and which nobody really gives a second glance to, that are the happiest. Perhaps the dandelions can only dream, Someday, I’ll catch someone’s eye and they’ll turn around and notice me, and then I’ll know for sure that the most beautiful flower is me. But I won
der whether it’s actually the dreaming of this dream—rather than it ever coming true—that is where the real happiness lies.
A long time ago I used to dream that I was a neurotypical child. In these dreams I was forever laughing, chatting away and swapping jokes with my friends and family. My Dream Me forgot all about My Real Me here in the waking world. Then I would wake up and return to myself, but I’d be clueless about where I was or what on earth I was doing in this place. When I finally realized I’d been dreaming, I’d well up and tears would spill down my face.
Dreams can be cruel. Things unthinkable in reality can easily come to pass. Are there not moments when your eyes are open but you wonder if you’re waking or dreaming? To me, it’s as if I’m standing at the fork in a road of a double life, seized by inertia. But no matter how beautiful the dream is, I sooner or later get drawn back to reality. I rub my eyes and get up from my futon. Strangely, perhaps, even though I envy My Dream Me, these days it’s a bit of a relief to get back to who I really am. I now know that My Dream Me is also a Fake Me, I guess. I might have longed once to become that neurotypical version of myself, but really it was only in the way a child would want to be the hero in a film. Dreams might let us see things afresh, but they are illusions. This world is my world. There is no other.
Fall Down 7 Times Get Up 8: A Young Man's Voice From the Silence of Autism Page 8