Social Policy in Ontario

Author of teen autism memoir grows up but can’t escape heartbreak

Posted on July 9, 2017 in Inclusion Debates

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TheStar.com – News/Insight – Naoki Higashida is the non-verbal author of bestseller The Reason I Jump. In Fall Down 7 Times Get Up 8 he explains his behaviours and challenges others’ perceptions.
July 9, 2017.   By NAOKI HIGASHIDA – Excerpted from Fall Down 7 Times, Get Up 8

7) I remembered that I needed to say something to my helper . . .

8) . . . so I blurted out the phrase that was already in my head: “Have a nice day!”

Can you imagine a life where you’re confronted at every turn by this inability to communicate? I never know I’m saying the wrong thing until I hear myself saying it. Instantly I know I’ve slipped up, but the horse has already bolted and people are pointing out my error, or even laughing about it. Their pity, their resignation, or their sense of So he doesn’t even understand this! make me miserable. There’s nothing I can do but wallow in despondency.

The best reaction to our mistakes will vary from person to person, and according to his or her age, but please remember: for people with autism, the pain of being unable to do what we’d like to is already hard to live with. Pain from other people’s reactions to our mistakes can break our hearts.

Friendlessness

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, “Hah, 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 “practise 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.

Laughing

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 humour.

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 …

Hitting My Head

When I fight the demands of my fixations, and when my urge to do what my fixation dictates and my determination to ignore it smash into each other, I can erupt into anger. When I erupt into anger, I start hitting my head. I want to take control of the situation, but my brain won’t let me. Neurotypical people never experience this, I guess. My rage is directed at my brain, so without thinking anything through, I set about punching my own head.

Once I’ve mastered a fixation, I’m able to set its demands aside, ignore what my brain is saying and act according to my own wishes and feelings. If people try to tell me off while I’m hitting myself, or to forcibly stop me doing it, or yell, “What are you doing?” at me, I become utterly dejected. The more frantic and desperate I become, the more I punch myself: by now, it’s no longer about punishing my brain, it’s about punishing myself for having lost the plot so woefully.

If, however, people don’t flip out at the sight of me and understand that I’m not fully in control at such times, their forbearance gives me the headspace to think that one way or another I have to stop myself. So the next time you see someone like me in mid-meltdown, I’d ask you to conduct yourself with this knowledge …

Obstacles, Goals, Blessings and Hopes

In my life so far, I’ve experienced any number of hardships arising from my autism. These hardships arise in turn from the fact that our society is made up of a large neurotypical majority. You’d be forgiven for assuming, then, that I feel nothing but envy towards the “normal” majority, but that’s not the whole picture, not by a long shot. More and more, I’ve noticed the positives about having autism. Two things make this outlook possible.

The first reason is that my parents were never in a state of denial about my autism, nor did they ever consign me to a “special needs” pigeonhole. They just strove to help me get better at doing the things I was good at. Working towards independence is really important and is a necessary part of growing up for everyone, but independence — in and of itself — won’t dispel or dilute autism. I attribute the ease I feel in my “autistic skin” today to my parents’ unwillingness to swallow fixed ideas about autism and their resolve to provide whatever education was working the best for me at the time.

The second reason is that I’ve become better at making decisions for myself. Deciding things for yourself is a vital part of self-esteem. I believe that because my parents have always respected my wishes and feelings, my self-confidence had space to grow.

Whenever I hear the words “Ah, it’s because he’s autistic,” I feel dismay. That word “autistic” packs a negative punch and this negativity, I think, corrodes the position of people with autism. For sure, functioning in our society is difficult for neuro-atypicals, but encountering difficulties is not the same thing as being unhappy. How has it come about that the word “autism” invokes pity? A part of the answer might be that we see so few role models of people living contentedly with their autism. The fact is, we have no choice but to live in a society where autism is thought of exclusively as a sorrow and a hardship: a fact that triggers further sorrow and hardship.

Even I, as a child, used to think, “Wow, if only I didn’t have autism, wouldn’t life be great?” No longer. I can’t really imagine myself as not having autism because the “Myself” I’d be wouldn’t be the same Myself that I am now. A Me Without Autism, even one who looked exactly the same, would have an entirely different set of ideas and way of looking at the world.

It is unfair that even the personalities of people with autism get invalidated because of our differences from the norm. I take it as a given that if I’m no good at something, I’ll have to practise at it. The tough part is when people get riled and reproach us for taking ages to learn what neurotypicals pick up effortlessly. At times like these it really feels hammered into me that I’m a total waste of space. It seems to be not widely enough recognized that there are positives to be found in the neurologies of people with autism. If the world at large would take a deeper interest in how our brains work and research our uniquenesses — as opposed to focusing on our treatment and cure — we could take pride in our neuro-atypical natures.

There are reasons why people with autism exist in the world, I believe. Those who are determined to live with us and not give up on us are deeply compassionate people, and this kind of compassion must be a key to humanity’s long-term survival. Even when the means of self-expression and/or intelligence are lacking, we still respond to love. Knowing we are cherished is a source of hope — and no matter how tough things get, you can always soldier on as long as there’s hope. Since I came into this world, I’ve benefited from many wonderful experiences. Thanks to friends, family and supporters, I can be grateful for what’s around me and keep a smile on my face.

Life is precious, so we try to help each other; and as someone who tends to be on the receiving end of this mutual assistance, I feel especially heartened when people stay cheerful and positive as they assist me. Every single time someone treats me with kindness, my determination to live well from tomorrow is rejuvenated. This is how I feel empowered to give something back to my family and society, even if my contribution is modest. Thanks to the people who come to me with questions and ask for my opinions about things — never mind if I can’t always answer — I get to think about what I want. I feel blessed that I’m able to consider what kind of life would bring me contentment, and to exercise choices which might bring this about.

I love nature, I have an interest in letters and numbers, and I’m fascinated by some things that other people have no interest in whatsoever. If these fascinations are rooted in my autistically wired brain and if neurotypical people are unable to access these wonders, then I have to say that the immutable beauties of autism are such that I count myself lucky to be born with the condition.

Issues like our obsessions, fixations and panic attacks do need to be worked on, but rather than moaning about problems for which there are no quick fixes, I prefer to concentrate on my self-management skills, even if progress is gradual. To live a life where I feel blessed to have autism: that will be my goal from now on.

Excerpted from Fall Down 7 Times, Get Up 8 by Naoki Higashida and translated by KA Yoshida and David Mitchell. Copyright in the original Japanese text © 2017 Naoki Higashida and David Mitchell. English translation copyright © 2017 KA Yoshida and David Mitchell. Published by Alfred A. Knopf Canada, a division of Penguin Random House Canada Limited. Reproduced by arrangement with the Publisher. All rights reserved.

https://www.thestar.com/news/insight/2017/07/09/author-of-teen-autism-memoir-grows-up-but-cant-escape-heartbreakautistic-author-explains-what-can-break-his-heart.html

Tags: disabilities, featured, ideology, mental Health, participation, youth

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