Fall Down 7 Times Get Up 8: A Young Man's Voice From the Silence of Autism, Page 3

  Of course, I can’t very well stay in the bath forever, however much I might want to. Upon leaving the water I always feel a sense of regret, but because my bath is a fixture in my daily schedule I never get too agitated about it. I’m not even aware of having been cooled down by my cold bath until someone says to me, “Wow, your body’s really cold” or “Look, you’re shivering!” However often this is pointed out to me, I still seem to end up with a bathtub full of cool water. My hope is that by being told over and over that chilly baths really aren’t that great for my body, it will gradually sink in.

  Provided that life and limb aren’t being threatened, and that I’m not overly bothering people, this approach of it’ll gradually sink in has a lot to be said for it, I think. Every day is so full of challenges and difficulties that if I was more wound up about fixing my autism-derived behaviors now, life would be unbearable. When I was growing up, my mother couldn’t be watching over my each and every move—she, too, has had to develop a “hands-off” mode. This approach might not suit every instance of autism, but it’s served us pretty well, so far.

  The other day, when I glanced at myself in the mirror, I froze. Reflected there was a face that was not mine. I kept staring, thinking, What on earth’s that strange face doing in the mirror? Then I heard my mother laughing. “You look like an old man,” she told me, “with those wrinkles on your forehead.” I was surprised—without noticing, I’d made my forehead go all scrunched up and, like Mom said, there were now three horizontal furrows across my brow. It was thanks to those three lines that I failed to recognize myself in the mirror. I know I’m not brilliant at distinguishing one face from another, but I never would have believed that I could fail to know my own face just because of a wrinkled forehead. It really sunk in for me then: there’s a world of difference between merely seeing a thing and knowing what it is.

  I’ve noticed people often use the words “cool” or “hip” when talking about clothing or fashion. This whole concept of “cool,” however, makes no sense to me whatsoever. When I do up all the buttons on my shirt, I’m advised, “Best to leave the top one undone.” Or, when I zip my jacket all the way up to my throat, I’m told, “You’re supposed to leave it unzipped, you know.” It’s cooler that way, apparently, but to my way of thinking, buttons and zips are there to be buttoned and zipped up, so it feels strange not to. As for the clothes themselves, as long as they fit me and feel comfortable, that’s good enough—I don’t really care what impression my outfit makes on other people. Sometimes I admire sports people or celebrities or stars, but I never look at their clothes or style with any envy. Fashion just leaves me cold, I suppose.

  As an adult, I know that it’s not good to wear grubby or inappropriate clothing, and choosing clothes has become a fraught area—I’m simply not in the habit of thinking about my wardrobe and appearance. When I look in a mirror, I never know what it is exactly that I ought to be checking out. Even if I select one point, focusing my attention on it is already difficult. Aspects of my appearance that need fixing don’t leap out at me, and I can’t distinguish very well between how things look pre-adjustment and how they appear afterward.

  I’ve compiled a few personal “going out” rituals: change into an outdoors outfit, put on a hat, clean my glasses and put them on too, check my belt, tuck my shirt in and so on. Whenever I’m given fashion or style advice, I do my best to take it on board. But I always think that the daily life of the fashion-conscious, with all its dos and don’ts, must get really exhausting.

  Whenever I get some kind of a cut or scrape, I want to stick on a Band-Aid without delay. Sometimes I put one on not because I’m actually in pain, but because I want to confirm to myself where the “injury” happened. Also, it brings me reassurance to know that the Band-Aid will flag the cut, scrape, scratch or whatever to other people. Having something on my skin that normally isn’t there—in this case, a Band-Aid—feels weird, so usually I take it off quite soon. But when I notice my skin is a little damaged, or when it bothers me, I sometimes put another Band-Aid on so that other people will notice it too. Whenever a zit appears under my nose I put a Band-Aid on that as well, which always makes my family burst out laughing. I don’t clock that this is funny until I see my family laugh, but I soon forget all about it, so the next time I have a zit in the same place, I do exactly the same thing….

  Since I left school, I’ve been enjoying doing digital jigsaw puzzles on my computer. I suspect there are many children with autism who really love jigsaw puzzles. When I do puzzles, I pay more attention to the pieces than to the picture. All the pieces might look similar, but in fact, if you examine them closely, you’ll see that each one is minutely different in outline.

  I don’t begin the puzzle by working on the outside edges. Slotting two pieces together is the fun part for me and rushing to the completion of the puzzle defeats the whole point. I don’t take much pleasure from finishing it because that means the slotting together—the good part—is over. Once it’s done, I like to flip it over so it’s back to front. I love inspecting how the pieces all fit together from the plain reverse side, too.

  Then, after admiring the beautiful curved lines for a short time, I demolish the puzzle so it’s ready for next time. Simple pleasures are jigsaws.

  When I was really small I couldn’t eat a hard candy the way you’re supposed to. The moment I popped it into my mouth I just crunched it up into lots of hard little bits. I knew what “munching” meant, but I didn’t understand the idea of allowing a candy to dissolve slowly in the corner of your mouth. I remember eating those sweets thinking, Wow, these things are really hard. My family must have racked their brains trying to figure out a way to get me to suck sweets instead of crunching them.

  Then, one day, as I was biting a hard candy into gravel as usual, Mom told me, “No, it’s not crunchy-munchy, Naoki—it’s lickety-lick.” Back then, if I’m honest, I never normally paid Mum’s instructions all that much attention. But this time, her “lickety-lick” was so hilarious that it really banged my funny bone. I just gawked at her, waiting to hear her say it again—but then, from the corner of her mouth, there appeared an uncrunched hard candy. Once again Mom said, “lickety-lick,” and showed me the candy that had been in her mouth.

  This is how I came to understand the meaning and satisfaction of letting a candy slowly dissolve in your mouth.

  In the past, I was unable to divide a plate of food into portions. Even when asked directly, “Divide this into two, will you?” I couldn’t grasp the concept. A method only became available to me when I understood that dividing something into two could be achieved by transferring equal quantities of food from a big dish, little by little and in sequence, to two smaller plates. It took me a lot of practice—a bit for you, a bit for me, another bit for you, another for me, and so on—before I had my method perfected. But I got there in the end. The final step was to learn to be satisfied when the sizes of the dished-up portions are roughly equal in appearance. Now that I’ve reached this stage, I can serve up food even when more than two people are present. Most neurotypical people would, I guess, pick all this up simply by listening as it was explained or else by observing someone as they divided food into portions. In my case, however, even when I have a picture in my head of the completed task, the sequence of steps I need to take to turn that picture into a reality stays unclear. I might watch somebody doing the job I need to do, but my mind won’t quite grasp that I’m free to follow suit. It takes practice, hands-on guidance, small steps and “lightbulb” moments for us people with autism to arrive at our hard-won goals.

  I jump up and down a lot, but that doesn’t necessarily mean I’m big on trampolining. There was a trampoline at my special needs school, so I went on it from time to time, but I don’t think that is connected with my habit of jumping up and down on the ground, or with anything else. Of course, any child who really loves trampolines should feel free to go ahead and jump—I’m just saying that the fixed idea that says trampol
ines go with autism can be wide of the mark.

  I’m pretty useless at sports in general, even though “sporty activities” are among my favorite ways of spending time. Playing baseball properly, for example, is out of the question for me, but I still really enjoy throwing and catching a baseball. Likewise with badminton. I can’t say I’m any good at it, but just hitting the shuttlecock successfully even once leaves me delighted with myself.

  It used to bother me greatly not knowing how long a badminton session was going to last, so we would decide in advance either how many rallies we would play or what time we would stop. Even if we were mid-rally and the badminton session was going well, my need to stop at the agreed time would override what I did or didn’t want. But then, one day, perhaps because I hadn’t played for ages, I forgot to set a finishing time or a rally limit. After a long while, the person I was playing observed, “Hey, today you’re not bothered about fixing a time to stop, are you?” That was the first I knew of it—and I was as surprised as he was. The upshot was, we stopped playing badminton that day only when the shuttlecock fell to bits. Thanks to that session, I gained one more freedom.

  A number of years ago a song called “O-Shiri-Kajiri Mushi” was super popular. I remember feeling astonished when I first heard it because I thought there really must be bugs like that, which go around biting our butts. Probably there were other kids who were thinking the same. What most people found funny about the bug, I guess, was his comic character, but what tickled me was the combination of the words “bottom,” “biting” and “bug.” Whichever way I looked at it, the arrangement of words struck me as fresh and unexpected, and each time I heard “O-Shiri-Kajiri Mushi” I’d crack up laughing at how funny it was, while wondering how such a phrase could have been assembled. Once people around me caught on that I liked the song so much, they drew me pictures of the Bottom-biting Bug and bought me Bottom-biting Bug soft toys. However, everyone thought it was strange that I wasn’t displaying that much interest in them. Back then, it was harder to make myself understood because I was less able to communicate exactly why certain things fascinated me.

  Because my mind tends to go blank whenever I try to speak, I can rarely manage to vocalize the right word for the right situation. Occasionally, however, as I’m struggling to express myself, a noise comes out, like “Ah–ah–ah…” When I produce this “Ah–ah–ah” sound, my family now knows what’s going on. These are the times when I practice verbalizing the words that I wish to articulate. My mother tells me that before babies learn to speak they go through a similar phase. Because I couldn’t even show that I wanted to speak when I was small, you could view this “Ah–ah–ah” as a major breakthrough.

  Curiously, now that I stop to think about it, when I’m producing my “Ah–ah–ah” I do it spontaneously, almost without noticing. This differs from those times when I’m echoing back or parroting words or sentence pieces I’ve just heard, and from those times when I’m using formulaic set phrases. Maybe this isn’t too far away from how you neurotypical people experience the flow of natural conversation?

  © NHK/URUMADELVI

  People are forever using the phrase, “Hang on a moment!” In the past, this used to vex me because I never had any idea how long this “moment” was going to last. It varies so widely, depending on the situation. A timer might have come in handy, but then again, I’m prone to getting strongly fixated on things and quite possibly the timer itself would have ended up as another thing to obsess about. These days, however, when I’m told to wait for a little while, I’m able to ask the other person, “Until what time?” If something I’m doing is due to end at 3 P.M., for example, and it overruns, I can manage to propose a short extension by uttering something like, “Until it’s five past three.” How I would love it if I could breezily ask, “At what time shall we call it a day?” or “How much longer should we go on for, do you think?” but articulating such long sentences is nigh on impossible for me. Referring to a clock-time, however, is generally enough for the people I’m with to catch on that what I mean is, in fact, “How much longer?” and to give me a reply. If we still overrun, then I’ll follow up with a later time reference, like, “When it’s three-fifteen.”

  This is the method I’ve devised to keep my head together.

  When an agreed time is altered or a destination is changed at the last minute, I can act as if the sky’s falling in. I need time to accommodate my inner state to the change in plan. Nonetheless, it’s important to go through with the change. By sticking to the original arrangement purely to avoid the fuss I’ll kick up, I’ll lose a valuable opportunity to practice adjusting to a revised schedule. Forecasts and plans are all well and good, but I think it’s crucial to get used to adapting to the unexpected and unforeseen. Taking these changes on board might require time, but it’s time well spent, surely. My autism and its fixations could be why I reject adjustments, and although there might exist an array of strategies to deal with this, only those that a person with autism is capable of adopting will be of any use.

  My mother monitors and guides my actions, steadily and tirelessly. It’s rare that she blames me or gets depressed about something that I’ve done due to my autism. Even when I’m really not in good form, she doesn’t make a big deal about it. This constant stable attitude of hers is how I’m able to strive to do better tomorrow. I, too, aspire to be better than I am.

  I’ve heard this: “The first thing you do when you get up is to work out what you’re going to do with the day.” In my case, when I open my eyes my first conscious thought is about whether it’s 6 A.M. so I can get up. I look at my watch straightaway and, if it’s six, I feel relief. If it’s already past six, I need to focus really hard on which of my morning chores will be amenable to shortcuts. After that, I check the day on the calendar. Only special occasions or events are written on the calendar, so if today is blank, I know there’s an “approximately average” day ahead. I’ve grown to be relaxed about the notion of “approximately average” only recently. Maybe this is because I’m less thrown by unusual situations. In the past, I had a much harder time if the order of the day’s events got switched or if urgent business cropped up unexpectedly. I didn’t mind about the change of plan itself; rather, I was very nervous about how I might react to the new situation. I can’t stop myself from worrying about vexing other people or getting pushed beyond my limits into a full-scale meltdown.

  I’m really not good at staying still. When I’m obliged to sit in one place for any length of time, I soon want to be up and about. Doing nothing drives me crazy and isn’t in the least bit restful; action relaxes me and puts me at my ease. I can’t explain why very well. It’s instinctual, like a wild animal running over a wide plain. I am connected to neither the past nor the future—my life is enabled only by the present moment.

  Having nothing to do in the present moment has the same impact on me as having nothing to do for the rest of eternity would. As long as I’m in motion, I feel as if I could become a valid member of society, like everybody else. That feeling, I think, brings solace. Maybe I’m mistaken, but I don’t think I am: by being active and in motion, my heart beats more strongly.

  Listening to my mother and my sister discussing how they handle time, I’ve come to understand that there are things they do that I don’t. These are, first, deciding by what time a certain job needs to be completed; next, working back to the present time to see what the available time frame is; and then, working on the job to ensure it is done by the target time. These calculations, I imagine, are key to turning plans into reality, but viewing a whole day in terms of subdivisions is a skill I seem to lack. I can assemble a daily schedule for myself, but I find myself unable to master time in the way that neurotypicals do. This inability is hardwired in, I suspect, and can’t easily be dispelled by effort, training or practice. For me, once time is compartmentalized its “scenes” are fixed and I’m no longer at liberty to change things around.

  Some people might think th
at scheduling is like slotting in variously sized jigsaw pieces into a rectangular puzzle, but that’s not how it works for me. By way of illustration: if I’m out with my special needs helper and I’m told, “To get home by eleven o’clock, we need to leave here by ten,” then the next time we go out to the same place I’ll recall those times and insert them into that outing’s timetable. This doesn’t mean I determine the time we need to start our journey home by any reference to the time we’ve been away: rather, “ten o’clock” becomes the “leaving for home” time, “eleven o’clock” becomes the “arriving at home” time, and these two numbers become engraved in my memory as two dots linked by a line.

  If my current activity doesn’t finish by the time the next one is due to start, I cancel the second activity or push its starting time back. Time adjustment has become possible for me—provided I have someone to walk me through the changes—so I can handle the schedule changes without getting confused, even with my dot-to-dot memory system. The reason I don’t fix my finishing time is that if an activity didn’t stop at the appointed moment I would simply end up swapping one “block” with another on the succession of events, scenes and items that make up my timetable. This way, I’m not constantly making arbitrary changes to my schedule.