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

by Naoki Higashida

  So, I cannot choose a favorite sticker, nor can I choose any favorite sticker. As soon as I’m told to select one, my mind goes into a whirl, the same way it does when I can’t express my thoughts or emotions. Because of this, I end up opting for the first one to catch my eye. This might not be the first one I see, nor the flashiest—it’s just the one my eye happens to seize upon—and my own volition doesn’t really come into it. What’s more, if an observer is looking on, he or she can set up a permanent connection between my choosing a sticker and—for example—pandas simply by declaring, “Aha, so it’s pandas you like!” and “Good choosing!” From then on, that particular choice becomes ingrained as a kind of default pattern.

  I can access this default pattern in the future and re-enact it, so the next time I’m in the sticker-choosing situation, the chances are I’ll be picking out the panda again. For me, sticker selection never really was the prize or reward that it is for everybody else. Following the beaten path of the fixed pattern is preferable by far to the stress of not knowing what choice I ought to be making—so, nine times out of ten, I take the easy way out. It’s not that I feel sorry for myself. This is how things are. I’d just like it if neurotypical people could understand what’s going on with us. That’s all.

  “How come I can’t talk?” This was a mystery to me for a long time. When I was a young child, I had no idea what was going on and all I felt was sadness. During my primary school days, I began to think I was a late developer. By the time I got to junior high school, I’d given up on the idea that anything at all could be done for me. I think the reason for this was that there was nobody around me with autism as severe as mine but who was also verbal enough to communicate with me.

  Later I became a student at a distance-learning high school and was only required to visit the physical school building on an occasional basis. My life started being different from that of most other people my age. Rather than the viewpoints of other people, what began mattering to me most were the thoughts and ideas inside my own head. There were those who believed that it was vital I carried on going to a regular school every day, like ordinary students, perhaps because young hikikomori people begin their permanent withdrawal from society by refusing to go to school and end up never leaving their bedrooms. For me, however, those few years “out of the system” turned out to be invaluable in terms of working out how to live according to my own free will.

  Living in a way different from everyone else requires a degree of courage. While it’s true that living with your family restricts your independence in some respects, the independence I’m talking about is more to do with the freedom to live as myself and be what I am in the wider society. So now I’m grateful to my family for giving me the space and the freedom I needed.

  We are taught at school that it’s a good thing to make lots of friends. There are some kids, however, who are just no good at it. And because children with autism are poor at interacting with others, many of them have next to no friends, and we can safely assume that some of these get teased or bullied by their peers. The bullies don’t mean to cause serious harm; they just throw their weight around because it’s fun. Some grown-ups tell the bullied kids simply to put up and shut up, even admonishing the victims and telling them, “Ha, there’s worse than that waiting for you out in the big wide world!”

  As far as I’m concerned, there’s no need whatsoever to “practice being bullied.” Acquiring superpowers of endurance is not something children need to be learning before they enter society at large. It is only the person being bullied who understands the true cost of what they suffer. People with no experience of being bullied have no idea how miserable it is to grow up being picked on the whole time.

  I would like people to stop pressuring children to make friends. Friendships can’t be artificially created. Friends are people whose respect and mutual support occurs naturally, right? Whether or not we have lots of friends, every single one of us is the main protagonist of our own existence. Having no friends is nothing to be ashamed of. Let’s all follow and be true to our singular path through life.

  During my days at primary school, I used to think I was a miserable, unfortunate case who nobody understood. Only my mom was on my side, and even she was only an ally—an alliance that hardly dispelled the hardship of being in a regular classroom while feeling uniquely different from everyone else. Why can’t I speak? How come I’m the only one who can’t do it? How I used to agonize over these questions as I watched the other kids doing all kinds of things effortlessly that I’d never be able to manage, not even if I spent my entire life trying. Every time, I just wanted to break down and cry.

  I stuck with my regular primary school until fifth grade—age eleven—but it had become so physically and mentally exhausting by that point that I transferred to a school for children with special needs. My feelings about the move were ambivalent, and remain so. In one sense, it felt like I was running away, and, once there, it took me a whole four years before I found a path to my authentic self. On the other hand, until then I had never observed a class in a special needs context and I was surprised by the big differences between classes there and the education I had been used to. While I was conflicted about the “special needs” label, the kindness I encountered from both teachers and students—unthinkable at my previous school—took the edge off my unhappiness. There, I was no longer a “problem case” but just a regular student. Some students were more capable than me while others had more severe challenges, and for the first time I realized how many neuro-atypical children existed in the world.

  The school for children with special needs afforded me the freedom to be what I was, but it became less a place to receive an education and more a place to think about my autism. Time passed without my really doing a great deal. The classes were, in theory, tailored to each student’s disability profile, but in practice the teachers had enough on their hands just handling the students’ routine requirements. Some students were “long termers” who had been there since first grade, while others, like me, had transferred in from regular schools because it was thought they were better suited to a school designed for special needs. Looking back, most of my classmates seemed to enjoy their days at school without any complaints, but I still wonder if they all believed that this was the place they truly belonged?

  That said, my new school was a place where neuro-atypical students were at least free from bullying or ignorant verbal reprimands. The school taught me the importance of being able to accept assistance and of being respected and valued by others. I learned that we all have a right to live as a human being should live, and that happiness is attainable whether we have a disability or not. I saw a future path leading first to a high school for students with special needs (to which my new school was attached) and then to a work center for people with disabilities. I resolved to increase the range of things I could do without assistance, to work at becoming as independent as possible and, to the best of my ability, to avoid inconveniencing others. I thought that any aspirations outside this future were unrealistic because I was now where I belonged. I consigned any memories of my previous primary school to ancient history.

  There were lots and lots of kids with autism at my new school for children with special needs. I had rarely encountered anyone with autism walking around town; I had been the only one at my local elementary school. But at my new school, you could spot tens of students with autism at a single glance. Retrospectively, I understand now that a belief was ingrained that neuro-atypical children belonged nowhere but at schools for children with special needs—end of story. I don’t mean that I was especially sad or lonely at my new school. I wasn’t. I just mean that there was no questioning of my fate.

  I can’t really say that I’ve ever hated the fact of my autism. Perhaps this arises from my never having been not neuro-atypical, but I suspect it’s truer to say it’s because I had a sense of self-esteem that existed independently of my autism. Thanks to this, I guess, I was abl
e to imagine myself going on to study at the high school for students with special needs, and then joining the local work facility for adults with disabilities. Despite this, however, once I finished my junior high school, I took an alternative route. I enrolled in a distance-learning high school and began to aspire to being a writer. Why the change in plan?

  I was changing inside. I began to realize that I was allowing a system to make my life decisions for me, and I started questioning things for myself: Must the fact that I have autism dictate every aspect of my life? and What do I want my life to be for? For whose benefit would I be attending the special needs high school and work center? If it was for my benefit, why was I so ambivalent about the prospect? Or was I just running away from something? I wouldn’t deny that I had learned a lot about many subjects at my school and had connected with myself as a person with autism. Equally, I often wondered why being there in the first place felt compulsory. For the first time, I understood that what is appropriate for some people with special needs is not necessarily appropriate for all, or at least not for me.

  People with special needs who can’t express their opinions never get any say in their education. However hard we work at it, we might never achieve the desired result. What’s more, when the special needs education falls short of its targets, the blame is often parceled out to the parents or the child in question. Education is supposed to help the child and parents: it mustn’t end up being a kind of holding cell. For this reason, our education must not be overly defined by the views of outsiders, or be unquestioningly compliant with the values and beliefs of specialists. Of paramount importance is that the special needs education be a suitable fit for each and every student.

  Two mysteries always jumped out at me when I was attending a mainstream school: first, that on the first day of the second term, all my classmates looked really shy as they arrived at school; and second, that the atmosphere in the class took so long to revert to how it had been before the long summer break. When I asked my mother the reason behind this, she replied, “It’s because your classmates haven’t seen each other for so long.”

  While I feel the pleasure of seeing a friend after a long absence, I don’t really understand this shyness at all. I’ve been trying to understand the reasons behind it. Could my classmates have been wondering about whether they and everyone else had changed over the holidays? By taking in each other’s faces and by talking, they gradually got their relationships back on the same footing as before. What surprised me—and surprises me still—was, first, how almost all my classmates exhibited that shyness; second, how everybody else accepted the shyness as normal; and third, that the same air of awkwardness occurred after every long break.

  I found all this deeply interesting. My guess is that because I’m not so conscious of the flow of time, a holiday of a month is merely one more scene embedded in the past. People who can remember the events of their lives in the correct order, on the other hand, need time to realign their pre-holiday selves with their post-holiday selves.

  I look back now at my regular school for neurotypical kids. For sure, there were things I couldn’t do on my own, and for sure, this could get depressing and tough. However, I studied and I took part in sports to the best of my abilities at the time, and while the effort eventually overwhelmed me, at least I was there for a while, laughing and crying and losing my temper along with my peer group. My regular school was an important training ground where I could learn about living in society. I regret not understanding this at the time. School doesn’t last forever, and sometimes I have misgivings about separating children with special needs from mainstream education completely. Is it too much to ask that the neurotypical majority make a little effort to understand people like me, who tend to remain off their radar? Yes it is, it seems.

  I accept it might be impossible to study exactly the same things, but it should be possible to share school buildings and grounds. At my regular school I learned about human rights and social cohesion, but when it came to my education, these principles didn’t seem to be applied. People with special needs don’t just require practice at the things they can’t do. They also need—crucially—to look for meaning in their lives. I wish more people understood that there are individuals who lead mostly invisible lives as they cope with disabilities and challenges, and that to observe them doing so is to reflect upon one’s own life. This is not to say that people with autism want you to think, Oh, those poor things! or I’m so sorry for them! All we want is to live alongside everyone else. People getting on with life and working hard together is a wonderful thing. Yes, the neurotypical majority might be more productive than us, but we, too, want to embrace life and be of use to others as best we can. Must people born with special needs lead unseen lives, as if we’re hiding ourselves away? Unfortunately, we are too often kept apart from society at large against our will. This denies us the chance of a meaningful life.

  I’m not here to make demands for improvements in the daily condition of people with special needs. I appreciate that neurotypical people have busy, stressed-out lives and that it’s thanks to you that we can lead tolerable lives, at least. But surely there’s a lot we can learn just by being together, by considering how you see us and how we see you? The way we live our individual lives feeds into society’s sense of values. There is more to mutual aid than material exchange and physical support. There is more to human life than eating and sleeping.

  The reason I didn’t attend the high school section of my special needs school was that I wanted to choose my own future. Just like anyone else would. Naturally, this choice entailed certain responsibilities, and the reality my decision led me to wasn’t always a bed of roses. But it was my choice, and my first step toward my vocation. Working at a facility for people with disabilities is in no way a negative thing—everyone’s life is valid—but fencing us off from society does us no favors.

  I can’t know everything there is to know, but I think that how we choose to navigate our lives should be an individual choice. The notion that we are best off living in isolation should not be taken as a diktat. It is by observing other people’s lives that one comes to an understanding of what is right for one’s own life.

  There are many ways of living, and this goes for people with special needs as well. We grow and bloom best in company. There must be so many of us with dreams that we yearn to see come true someday. May your futures and our futures come together.

  Some people say

  results aren’t everything:

  process matters more.

  Could this be because,

  as you strive goalward,

  it’s your inner state,

  not the actions you take,

  that count? Belief in oneself

  can win the day.

  Praise is not a fast track to self-acceptance, I believe. Praise derives from the judgments of others. It is distinct from whether an action truly went well or not. It is separate from how we think and feel inside ourselves. Many people seem to buy into a belief that praise boosts our will to succeed and nourishes our confidence, but I’m not so sure if that’s always the case. Of course, little children love being praised and it’s always pleasant to receive a compliment from an impartial observer. When I was a student at my special needs school, however, I used to have mixed feelings about teachers who would heap exaggerated words of praise on students for quite trifling achievements. There were children from all across the spectrum at my school, so sometimes it might have been appropriate, but the teachers would apply the same strategy even to much higher-functioning students than me. It was the same story with our parents or guardians—we got praised for the tiniest matters, or for things we had mastered ages before. Everyone was so unfailingly nice to us, it was as if every mean person had been erased from the world. Gradually, the atmosphere wore me out. It really felt like I was trapped in a school for infants.

  My gratitude to the teachers at my special needs school is profound, and I’m conscious o
f how diligently they cared for us pupils. Being praised isn’t a hostile act, but it’s worth considering whether the person with autism wants the praise as much as the praisers assume they must. Children with special needs already know they’re different, and they all live with hardships whose full nature only they can understand. Teachers and adults tend to focus on finding things to compliment. Compliments can help us to feel cherished and encourage us to focus on what we’re good at. However, whenever I was praised for doing something that, by rights, only a young child should be praised for, I felt as if my future was deferred indefinitely, yet again.

  What I, as a person with special needs, longed for was to be taught what role, what purpose, I could have in society, and how to attain a level of independence. Some people might think, No no, these questions are too taxing for children to understand. The answers, when put into words, might appear to be too complex for us, but I’d argue that that’s only because we are often so poor at handling language. I’d argue that every neuro-atypical person is thinking the same way about a life with meaning and independence. Children with disabilities might, to your eyes, look stuck in a perpetual childhood, but our thoughts and sensibilities evolve constantly. So, using vocabulary the child understands, please show them how they can live their lives to the full.