Book Review Of “The Reason I Jump” by Naoki Higashida.

The book, “The Reason I Jump”, was recommended to me a few months ago by a good friend of mine from my primary school years. Due to various constraints and factors, I only got round to reading it a couple of nights ago and it gave me the idea for this blog post (as well as a spectacularly lengthy Facebook status update which my mother thought was probably a world record breaker!)

“The Reason I Jump” was written by Naoki Higashida when he was thirteen. He is now in his early twenties. The original version of the book was written in Naoki’s native language, Japanese. The English translation was not published until 2013. Naoki was diagnosed with autism at the age of five and his verbal communication is significantly impacted by his condition so he communicates with an Alphabet grid. His book was written entirely through this method with Naoki pointing at the individual characters and his mother writing these down to form the eventual book. The book is written as a series of questions posed around living with autism.

Before reading this book myself, I had heard mixed reviews about it. Many were positive, praising how a boy considered unable to communicate and unaware of the world around him was able to communicate so articulately about what living with classic autism was like. Others were more negative, mainly from the Aspergers online community. Some questioned whether the more depressed views expressed in the book were those of Naoki himself or whether they had been influenced by his mother. However, I loved the book and actually I found some of Naoki’s more negative views to be similar to some of my views about myself. A lot of people across all levels of the autistic spectrum, from university lecturers to those who will need 24 hour a day support for their whole life, experience depression. This, in my opinion, is due to the harsh treatment society metes out to people with autism. At all levels of the spectrum, we are judged incredibly harshly every single day. The most recent example of autistic people being judged by those who have never even met them before was of a proposed care home for six adults with autism being forced to switch sites due to residents near the proposed site protesting at the plans (http://www.swindonadvertiser.co.uk/news/11373787.Site_for_autistic_people_s_care_home_to_be_moved_after_protests/?ref=rss) As Naoki so honestly points out, “having to apologize day in, day out totally drained me of hope”. My point here is that I don’t think Naoki’s mother had any undue influence over the more negative views expressed in the book-I think his depressive views came from how he was treated by society in general. I have met a lot of people in the Aspergers community online who will not hear anything negative expressed about autism, even from autistic people themselves. What really strikes me reading this book is that, at the time of writing, Naoki was extremely frustrated and saddened by the communication issues his autism caused him. I believe that nobody has the right to tell someone with autism not to be negative. Being negative about certain autistic traits is not to deny that there are positives of the diagnosis too. It is just being realistic.

I found this book to be  written in a highly articulate manner and very honest. He challenges the many inaccurate beliefs that people hold about people with autism, even those who are close to them. At one point, he writes, “One of the biggest misunderstandings you have about us is your belief that our feelings aren’t as subtle and complex as yours. Because how we behave can appear so childish in your eyes, you tend to assume that we’re childish on the inside, too”. Naoki challenges the all too popular belief that people with classic autism lack emotion and empathy. At one point, he writes, “Everybody has a heart that can be touched by something. Crying isn’t necessarily about sadness or meltdowns or being upset”. He also explains why he flaps his fingers in front of his eyes in a way that makes so much sense to me. He points out that “flapping our fingers and hands in front of our faces allows the light to enter our eyes in a pleasant, filtered fashion. Light that reaches us like this feels soft and gentle, like moonlight. But ‘unfiltered’ direct light sort of ‘needles’ its way into the eyeballs of people with autism in sharp straight lines, so we see too many points of light. This actually makes our eyes hurt”. My sensory issues are nowhere near as severe as Naoki’s and my vision is not affected by light other than strobe lights which make me feel incredibly disorientated but I completely understand why HE stims in this way (I’m not so sure that every person with autism who flaps does so for this reason-I believe a lot of them simply enjoy the sensation). A lot of people looking at Naoki flapping his fingers in front of his eyes would not give a second thought as to WHY he is flapping. A lot of people just think that’s something that autistic people do without attempting to discover their individual reasons for this.

What I really like about this book is that Naoki forces his readers to understand that a lot of people with autism are actually more sensitive to emotions and feelings than the average person. A lot of people with Aspergers I have come across online point out that their so called lack of empathy is actually a result of having too much empathy-so much empathy that they cannot process it and instead appear blank. I have very high affective empathy which is why watching the news makes me feel so horrible. I cannot bear seeing the suffering of other people. However, I know that a lot of people would probably consider me as lacking in empathy because I don’t express it in the “typical” way-I am not a fan of hugs so it will not occur to me to hug someone who is upset yet so many people see this as the only way to express your empathy for someone’s situation. Naoki points out in his book that “people with autism react physically to feelings of happiness and sadness. So when something happens that affects me emotionally, my body seizes up as if struck by lightning”. While I wouldn’t personally describe my reactions to emotions in the same way (I think this is probably due to me being blessed with the verbal ability to explain my emotions whereas Naoki, lacking this verbal ability, displays everything physically. I can say “I’m really happy” but someone without language may just grin, giggle and display their happiness through physical mannerisms such as swaying and bouncing), I can fully appreciate how in tune with his emotions Naoki is, contrary to what most people believe autism is.

Naoki also displays a maturity far beyond his years. At one point, he writes a poignant message which I think everyone should take note of-“To give the short version, I’ve learnt that every human being, with or without disabilities, needs to strive to do their best, and by striving for happiness you will arrive at happiness. For us, you see, having autism is normal-so we can’t know for sure what your ‘normal’ is even like. But so long as we can learn to love ourselves, I’m not sure how much it matters whether we’re normal or autistic”. He also writes a heartbreakingly honest account of how he feels when he notices that people are upset because of something that he has done. The following quote is one I really, really hope the members of Autism Speaks who portray people with autism as burdens on family life and on society in general read. When asked “what’s the worst thing about having autism?”, he makes a plea for people who live with those with autism “not to stress yourselves out because of us. When you do this, it feels as if you’re denying any value at all that our lives may have-and that saps the spirit we need to soldier on. The hardest ordeal for us is the idea that we are causing grief for other people. We can put up with our own hardships okay, but the thought that our lives are the source of other people’s unhappiness, that’s plain unbearable”. This part of the book made me very emotional. People with classic autism (and with Aspergers too, although less so) are so often falsely portrayed as living in their own worlds and unaware of other people’s emotions and feelings. What Naoki writes proves, beyond doubt, that he is acutely aware of other people’s emotions and feels responsible for their stress and upset. I remember reading a blog post from a mother who has a young son with high functioning autism. This son read an article that his mum had on the computer on the Autism Speaks website and asked his mother whether it upset her that he had been born. The mother then pointed out in her blog post that the emotional burden such knowledge places on those of us on the autistic spectrum is simply too much to bear and too high a price to pay. People like Naoki feel this blame and guilt EVERY SINGLE DAY and it is not fair. NOBODY should have to feel that much guilt and blame just for being themselves and it is those with disabilities (including, but not limited to, autism) who are made to feel like this so, so often. Is it any wonder that the rate of depression among the autistic community is so high? Wouldn’t anyone feel depressed when they know that they will get the blame for every single mistake they make? Wouldn’t anyone feel depressed when they know that there are organisations out there whose sole purpose appears to be to highlight how expensive and stressful it is to care for someone with autism? Yes, caring for someone with classic autism can be extremely stressful and costly and I don’t think anybody would deny that but blaming this on the condition itself is not the way to improve things. Protest about the lack of resources by all means as the number of support services in existence is woefully low when you consider how many people need to use them but please don’t make someone with autism feel that their life is the source of misery. Would you like to feel that way? A lot of people with autism hate conflict and hate upsetting people-please bear this in mind whenever you think of us as uncaring.

Naoki also highlights another important point in his book-that a lot of people on the spectrum are perfectionists. This is one of my traits-I hate making mistakes and I put a lot of pressure on myself to achieve highly in everything I do. Naoki points out, “When I see I’ve made a mistake, my mind shuts down. I cry, I scream, I make a huge fuss, and I just can’t think straight about anything any more. However tiny the mistake, for me it’s a massive deal, as if Heaven and Earth have been turned upside down. For example, when I pour water into a glass, I can’t stand it if I spill even a drop”. While my dislike of mistakes is not that extreme (my lack of physical coordination means that I often spill drinks!), I do get extremely stressed by them and it does put me off trying the same thing again. Maybe this is why I react so badly to any form of criticism, either real or perceived. I cannot bear that I have let myself down and other people pointing it out just makes it feel 100 times worse. It is nothing to do with arrogance-it’s not that I think I’m perfect. It’s that I know painfully well that I am not perfect-it’s more an issue of low self esteem than arrogance, in my personal experience.

One aspect of this book that I really like is where Naoki talks about how it makes him feel when people talk to him like a toddler simply because he can’t communicate verbally. This is a common mistake that a lot of people make when talking to people with all kinds of learning disabilities, not just autism. Naoki points out that “every single time I’m talked down to, I end up feeling utterly miserable-as if I’m being given a zero chance of a decent future.” He then goes on to say, “True compassion is about not bruising the other person’s self-respect.” So true! People with classic autism may respond best to simple requests and tasks rather than being overloaded with verbal information but that does not mean they should be spoken to like infants, particularly when those with classic autism who share their experiences through different sections of the media, such as Naoki and Amanda Baggs, the non verbal autistic woman who has made lots of YouTube videos about her life, have shown incredibly clearly just how intelligent their minds are. That’s not to say that those who haven’t expressed such intelligence should be infantilised-they most certainly shouldn’t-but, to those who have unequivocally shown how intelligent they are, it must be so painfully frustrating to be spoken to as if they were incapable of understanding what is being communicated.

Overall, I would recommend this book to anyone who has an interest in understanding autism from the perspective of somebody who has it, rather than from the perspective of family members, which, although useful, are completely different from those who actually have an autistic mind. It was helpful to me, not only as someone with Aspergers Syndrome who experiences some of Naoki’s traits but am blessed with being verbal, but also as someone who works with children with classic autism. I would recommend it to parents who have children on the autistic spectrum, particularly those with classic autism, not because I don’t feel that Naoki’s book has anything in common with higher functioning autism and Aspergers Syndrome but because, to my knowledge, Naoki’s book is the only one that has been authored by someone with classic (what used to be called “full blown” or “severe”) autism and, as David Mitchell points out in the foreword, the book really helped him with understanding his toddler son with classic autism. Obviously Naoki is his own person and every individual with autism is different. Indeed, as David Mitchell points out, “autism is more like retina patterns than measles”, meaning that every person with autism is different from the next. This is something that I feel could potentially be pointed out a bit more in the book as Naoki has some theories about autism which come from his personal experience but may not be relevant to other people on the spectrum. However, this is the only constructive criticism I have of the book and it really is a tiny one. Overall, I loved it. It’s a fairly short book (I read it in an hour but, once I am interested in a book, I go into a trance and just read until it’s finished). I really would urge people to read it-it is one of the best and most honest insights into autism from the perspective of an autistic person that I have ever come across in all the years I have been reading about it.