Warning, possible long post ahead! I have lots and lots of thoughts on this one. For those who don't know what The Reason I Jump is, it's a look into the mind of Naoki Higashida, a 13 year old boy (at the time of writing the book) living with autism. Higashida is unable to effectively communicate verbally at times, so his mother developed an alphabet board that opened up a way for him to communicate with others, also allowing him to write this book. The book itself is a series of questions posed to Higashida such as "Why do people with autism talk so loudly and weirdly?" and "what's the reason you jump?" among many others, along with extremely short pieces of touching fiction written by Higashida. The book ends with a beautiful short story written by Higashida with the aim to show the reader what it's like to not be able to communicate with someone that you love.
Now...time for thoughts. Let me begin with this...I absolutely loved this book and I think everyone should read it, regardless of whether or not you have a child or loved one on the autism spectrum. There's something that all of us can learn from it not just about people with autism or other disorders related to the autism spectrum, but anyone with a disability.
I can hear the criticism a mile away for this book and I don't think it's completely undeserved. I think many a reader would be hesitant to pick up this book because they may feel there's danger in taking one child's experience and applying it to every child with autism. That's not what this book is about. It's not a text book of "how to deal with a child with an autism spectrum disorder." Rather, it's a look into Higashida's experience with autism and the few lessons that he does share with us, I think there is deep meaning in each of them and a true gift given with each of them.
There were a handful of lessons learned from this book that I truly think are applicable to not just all people with autism spectrum disorder, but to all people with disabilities in general. The main points that Higashida drives home are these:
- He interacts with the world differently than us. It's important to understand something as simple as that. We know for a fact that people with autism experience their senses differently than people without autism. The feeling of clothing, the passing of time, the consistency of food. All of these things can be catastrophically unsettling to a person with autism.
- People with autism have meltdowns. Higashida's descriptions of his meltdowns broke my heart to a million pieces. There were many many times in this book that he said that he hated himself. That that's what he was feeling when he has his meltdowns. And often those feelings of hating himself came from not making others happy. Those meltdowns can also come from the above though...from the co-occuring sensory integration issues. Higashida suggests that during these meltdowns, the best thing to do is just to let the person go through it but to "please make sure I'm not hurting myself or someone else."
- People with autism don't want to be alone. Higashida talks about how he thinks that people think that people with autism enjoy being alone. He says that that's not the case at all for him. He says that he often ends up alone because he doesn't want to bother other people or because he can't effectively communicate with other people. The most important lesson here though is that people with autism need and want love just as much as everyone else. I remember when I worked as a personal care attendant while I was still in school, I would often work with kids with autism and this in particular would break my heart. The kids that I worked with with autism would just get alienated and people would think "well that's how they like it." And I think it's because they couldn't communicate verbally. But if you spent any amount of time with these kids, you'd quickly learn that they loved the company of others too.
- People with autism don't like being talked to like they're younger than they are. Because a person can't communicate verbally very well doesn't mean that they're 10 years younger than their age. This drives me nuts. It's like when people yell at a blind person. It makes no sense. There's nothing wrong with their ears. There's no need to talk to a person with autism like they're a baby.
- Don't give up on us. This is another thing that Higashida says over and over again and another thing that broke my heart. Just the fact that he has to say that tore me apart. But really...have patience. It truly does take patience caring for someone with autism. I can recall being at a mardi gras parade with a kid I was caring for once who had autism and he just bolted in the middle of the parade! Right into the huge crowds and the floats. I panicked and when I finally found him I was furious and took him home and told him no more parades. After reading this book, I regret that. Apparently it's common for people with autism to do this. They wander and almost can't help it. And then I think back to Higashida saying "and then I hate myself for doing that" and now I wonder if that kid that I was working with felt the same way afterwards.
One thing that bothered me some was the way that some of the questions were worded. I would be interested in knowing where the questions came from. If they came from his peers maybe? That's almost where it sounds like they came from. Or maybe he posed the questions that he wanted to ask himself? But "why do people with autism talk so loudly and weirdly?" really?? In his answer to that question, part of what he says is "This is one of those things I can't control. It really gets me down. Why can't I fix it?" I'm sure it doesn't help to have it pointed out as "weirdly."
I'll end this review by sharing my very favorite answer in this book. Higashida returns again and again in this book to his love of nature and I smiled every time he talked about it. He just radiates joy when he talks about nature. The question posed to him was "Why do you enjoy going out for walks so much?" Here's his answer:
"My guess is that lots of people with autism like walking, and I wonder if you can make out why. "Because walking makes you feel good?" "Because it's great being out in the open air?" Both these replies are true, of course, but for me the number one reason is that us people with autism love the greenness of nature. Now you might be thinking, "oh is that all?" However, our fondness for nature is, I think, a little bit different from everyone else's. I'm guessing that what touches you in nature is the beauty of the trees and the flowers and things. 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.
The greenness of nature is the lives of plants and trees. Green is life. And that's the reason we love to go out for walks."
10 comments:
I think that criticism might from the choice of pronoun. Just reading that beautiful last quote you shared, it struck me. It was all "our" and "we" and "us," not "my" and "me" and "I." That unsettles me a little. I suspect that Gray would wholeheartedly agree with every one of those bullet points on that list, and yet I also suspect he would be offended by the use of those pronouns. He takes words literally! :P Like you can't say, "I'll be there in a second." If you're not then there in a literal second, you've just lied to him.
All that said, I think you convinced me that I should give this one a go.
Debs, I agree with you wholeheartedly there! But I couldn't fault the author there...he's a thirteen year old boy with nonverbal autism answering these questions and maybe that's where an editor may have come in handy. I think he wrote this book with the intention of helping all people all people with autism which is why the pronouns are what they are. Funnily enough, he addresses time and schedules. He says that he has no sense of time at all which is one frustrating things for him and he also says that he doesn't like being given a schedule and being told we're doing this, this and this today at this time, this time and this time because if any of it doesn't go as planned it becomes catastrophic to him and can cause a meltdown in his mind. So to him "I'll be there in a second" would also be taken literally :P
when i lived with my brother the next door neighbor had (has) an autistic child but better off then the boy in the book..
as you know its not easy getting into the head of a non autisic person let alone one that cannot talk! I can't even imagine....
Yeah, Gray has a horrible time with time too. In fact, it's sort of what he and Dr. B are working on now. Not that he'll ever see/deal time the way we do, of course, but she's trying to help him with some little things to maybe make it easier. Anyway, I think the whole time management/schedules sort of thing is one of those areas that illustrates really well that first point in your list. It used to be *very* frustrating to deal with Gray when it came to time, until he was diagnosed with Aspergers and we came to learn that he just does not see the world like we do. He's not being willfully disobedient about getting things done by a certain time or being ready to go somewhere by a certain time or anything like that--he just honestly does not have a sense of time like we do. Simply telling him that he needs to do this or that at such and such a time doesn't work because unless he looks at a clock *constantly* he just has no idea how much time has gone by. He can sit and draw for four hours straight and be under the impression that 15 minutes have passed.
Btw, I don't fault the author either. I think an editor could have dealt with that. Maybe even with a short note in a foreward or something. And maybe it's just a matter of translation. It honestly only really struck me because I know how much that upsets Gray--having people think people with Aspergers are one big homogeneous group who all think and feel and do everything exactly the same.
Anyway, I will definitely be getting my hands on this book. Hopefully soon!
I read this book a while back and had some of the same criticisms that others mentioned having. You're right though, everyone should read a book like this. We usually hear about autistic children through books written by their parents but almost never from them.
I definitely want to read this at some point and see what my thoughts are... I just haven't got to it yet. Great post about it, Chris.
The "we" and "our" pronoun thing might also have to do with translating Japanese or with the Japanese culture and the usual lack of pronouns when speaking.
Thanks for introducing us to this book.
It occurred to me that since the young man in question is non-verbal, putting his thoughts into words we can understand, and then into English, is a double translation. It's amazing his voice is still clear.
That being said, I haven't actually read it yet. I have it on hold at my library and am at #8. I wish you would send my library your reading list, Chris. They are woefully behind.
Change of subject. NEED more kitty photos, stat.
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