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Opinion / Reviews

Book review: Meet one person with autism

by  /  15 November 2013

The autism described in The Reason I Jump is quite different from the mostly social disorder that I, as a researcher and clinician, find in textbooks and journal articles.

The new bestselling book, featuring the remarkable testimony of a Japanese boy who has severe autism, is a surprising and engaging memoir that’s full of paradoxes.

Foremost amongst these is the book’s genesis: Even though it suggests a sense of direct, immediate access to the thoughts and ideas of the author, 13-year-old Naoki Higashida, the prose for the book was in fact created by a sequence of processes involving several collaborators.

Higashida finds spoken communication all but impossible, but has learned to express himself by pointing to Japanese hiragana letters printed on a piece of card in order to spell out words. In this manner, he meticulously wrote the book over the course of months with his mother as scribe.

The book then came to the attention of a married couple, who were perhaps uniquely qualified to make it accessible to English speakers: the renowned novelist David Mitchell (author of Cloud Atlas) and his Japanese wife K.A. Yoshida, who have a son with autism. Mitchell and Yoshida translated Higashida’s work for an international audience.

The result is a slim volume whose lucid prose has caused me to reconsider some of the most basic ideas I have about autism.

Over a hundred or so pages of question-and-answer, Higashida displays an originality of thought and poetry of expression that eludes most writers, let alone most 13-year-old boys. For example, when answering “Why do you ignore us when we’re talking to you?” he writes: “A person who’s looking at a mountain far away doesn’t notice the prettiness of a dandelion in front of them. A person who’s looking at a dandelion in front of them doesn’t see the beauty of a mountain far away.”

Further, the level of empathy and emotional insight this teenager displays will surprise many readers, and certainly anyone who has studied autism. The conventional wisdom holds that the disorder, at its heart, is a social disorder, in which the capacity for understanding the thoughts and emotions of others is badly impaired.

Locked in:

Higashida’s account blows this conception out of the water.

He regularly conveys a sense that he understands the reader may have a perspective that is different from his own, and shows extraordinary skill in knowing what that perspective is and in trying to change it. He describes experiencing emotions that rely on social awareness, such as embarrassment and envy; he loves to be with other people; and above all he feels terrible when he thinks he has caused upset or pain for others.

Higashida reveals some of this heartbreaking meta-awareness when describing why he seems to ignore people when they’re talking to him.

Even though I feel guilty toward the person who has spoken to me, I can’t even apologize, so I end up feeling miserable and ashamed that I can’t manage a proper human relationship.

Higashida gives an account of a sort of ‘locked-in’ syndrome, in which he is a person just like anyone else, but has become the victim of a body and mind that he cannot control — “as if my whole body, except for my soul, feels as if it belongs to somebody else and I have zero control over it.”

In this way, his book sometimes evokes an appalling sense of claustrophobia, as if it is a communication painstakingly tapped out in Morse code from within a solitary prison cell. As Mitchell points out in his introduction to the book, Higashida’s social difficulties are not core symptoms of his autism, but rather one of its indirect consequences.

Whatever outward appearances may suggest, this book argues that people with severe autism are not so different from anyone else. Crucially, we are reminded that they are just as sensitive to the reactions of others, and have the same need to be understood and treated with kindness and respect, as the rest of us.

However, at other times, Higashida’s account suggests profound differences between the daily experience of people with and without autism. In particular, he appears to know little distinction between the passing of a day and of a second: “Inside my head there really isn’t much difference between what I was told just now, and what I heard a long, long time ago.”

To my knowledge, scientists have shown no interest in the felt experience of time in autism, and this would seem to be a fundamental feature of the disorder that requires further investigation.

Jumping forward:

But what do we do with these revelations?

The idea that Higashida’s description of his life could suggest a topic for empirical investigation raises the broader question of what we can learn from this book. In its gentle, lyrical way, The Reason I Jump is controversial, because it suggests that the current official consensus about autism is wrong.

As someone who studies autism, and tries to help people with the disorder, I was left wondering how much I should be influenced by this book: Should I continue to trust mainstream opinions, based on clinical wisdom and findings from scientific investigations? Or should I ignore the so-called experts, and be guided instead by this authentic voice of experience?

To grapple with these questions is to ask about how we can know things, and whether some routes to knowledge should be more privileged than others. 

Trying to decide whether the book will teach me more than the scientific literature on autism is like asking whether I will learn more about America from reading Moby Dick or from studying reports from the U.S. Census Bureau. Both provide insights. But these insights are qualitatively different, and no universal standard sets one above the other.

In the history of autism research, however, so far there has been too much U.S. Census Bureau, and not enough Moby Dick. The Reason I Jump serves as a reminder that the voices of people with autism must play a greater role in shaping the general understanding of autism, and should be more influential in shaping clinical services and the research agenda.

Naoki Higashida is explicit about why he wrote The Reason I Jump. Speaking on behalf of people with autism he writes, “We are misunderstood, and we’d give anything if only we could be understood properly” and “I hope that, by reading this book, you might become a better friend of someone with autism.”

His book has become a popular sensation, selling out of its first hardcover run and making late-night television. I’m heartened to think of readers all over the world falling under its spell, and discovering in themselves a compassionate curiosity about the worlds of people with autism.

William Mandy is senior lecturer in clinical psychology at University College London.


  • usethebrainsgodgiveyou

    Outstanding! I’ve always sensed that coming at autism from an insiders’s perspective would be helpful. Some people have concern’s that the book was “facilitated” by Naoki’s mother. I think we should be very careful before negating a voice when we have no idea of the truth. Is it better to presume confidence, or to infantilize? I worked in an ABA residential school. It was not uncommon for the “non-verbal” side, who were treated as though they were preschoolers, to have VAB scores of a toddler in the adaptive behavior side, and an understanding of language in the pre-teen level. (I was privy to the test scores. I have also been privy to bright children in special ed classrooms being talked to as if they were profoundly retarded, when they are NOT.)

  • Chris D.

    You write:

    “Even though it suggests a sense of direct, immediate access to the thoughts and ideas of the author, 13-year-old Naoki Higashida, the prose for the book was in fact created by a sequence of processes involving several collaborators.”

    And then you proceed to describe how Higashida did, in fact, write the text. Your description minimizes his contribution, even though the other collaborators in the process appear to be no more than you might find in any other translated work–certainly by someone unable to actually type directly.

    You might give some thought: if this book had been written by an adult with ALS, who needed the same transcription and translation work from others, would you have described the book’s production in the same way?

  • Nick

    Interesting but can he really “speak on behalf” of people with autism? How well does he know “people with autism” besides himself? If well, how is he able to communicate with them, if he can’t with non-autistic people?

  • Chris D.

    Nick:

    It’s actually more primitive than that: we’re just now starting to get the voices of autistic people into the conversation. As a society, we’re just beginning to recognize that they actually do have emotional connections and empathy with people: they just experience the world in a fundamentally different way, and have varying difficulty communicating via the normal routes.

    There’s a moment in the documentary “Autism: The Musical” that illustrates this, where a nonverbal boy with erratic physical control types out an emotionally complex and extremely perceptive message to his mother.

    So “speak on behalf” doesn’t mean “autistic people all agree on this”; it means “we’re human beings with emotion, empathy, and opinions.”

    • Athena B.

      Chris:

      You have hit the nail on the head. First let me state that I am an Autistic Person and I am the mother of 6 Autistic People and the grandmother of 3 Autistic people. I was having a conversation with my youngest son about how he needed to try a little harder at school because I know how intelligent he is and I didn’t think he was doing his very best. I said to him, “You need to spend more time on your homework and less on those video games. I know that it is hard to do some of the writing assignments the teacher gives you but I know that you can do this. I have seen how good you are at designing things and doing pre-programming activities in your video games so I know you can do better in school. I know it school is hard but I believe in you.” He looked me dead on in the eye and profoundly declared, “Everything is hard except for my games.” The games he plays develop pre-programming skills in children that have an interest in technology. They help them come to understand cause and effect and if/then choices in a 3D gaming environment. So to my autistic child it is easier to program a computer or build a computer from parts than it is to write a paragraph describing a fictional story that he just read or even a story about what he just programmed the computer to do.

      He can’t stand to be in a room with fluorescent lights because he can see the flicker of those lights even when they are brand new. Now you think about the last time that you were in a room with a fluorescent light that was going bad and just how annoying that flickering light was to you. Well my little man can see the bulbs flicker when you can’t. Oh, BTW so can I so I can totally empathize with what he is experiencing.

      How much credibility should this book be given? Well it is absolutely true for one Autistic Person. Many of the things in it rings true for many Autistic People. However, it is not a wholly accurate description of every Autistic Person’s experience. I do not feel frustrated at my inability to control certain aspects of my body. I do not feel the necessity to try to be like NT people. However, that is voice of a 51 year old woman that spent the majority of her life without a diagnosis trying to fit into a world that I could not fit into. I have already done the “Why am I like this?” mind game and decided to emerge from it as a victor not a victim. Waking up in a morgue after an attempted suicide can have that kind of profound effect on a person. My opinion is tainted by my life more than my diagnosis. My diagnosis was a relief for me because it explained in a single word what I had been screaming at the top of my lungs to people for years. It is a word that strikes fear into the very soul of anyone to whom I speak it so I speak it a lot. AUTISM!

      I am an Autistic Person and so are all of my children and most of my grandchildren. I am married to an Autistic Person. We can have marriages, children , jobs, and even join the local PTA. Then there are Autistic people like my youngest son who barely acknowledges the existence of other people. We had to guard my youngest daughter from her older brother as she was learning to crawl because he would step on her if he was walking from one place to another and she was in the path he was taking. We lived in a home with video cameras, alarms and lots of locks. My son was prone to elopement. After I broke my foot dragging him out of the creek next to our home We put him and his baby sister in swim lessons. About 9 years later he and his little sister are both gold medalists in Special Olympics Swimming. This is the same child that so profoundly said to me that everything in his life was hard except for his programming games and who can’t stand mashed potatoes or fluorescent lights. This is the same child that will talk a blue streak about his music or games but struggles to say hello to a person at our church that he has known for over 5 years. Autism is a Spectrum and no single book describing the perspective of a single person on that spectrum can say what it is like for all of us. What needs to be garnered from this and all the other books being written by Autistic People is that we do have a voice and a great deal to say even if we don’t say it the same way that NT people do. What everyone that “works with” Autistic People needs to understand is that we feel joy and pain, fear and courage, love and hate, and a host of other emotions and that we are fully capable of empathy as long as we acknowledge your existence. What we lack is the ability to always control whether we will acknowledge your existence. Sometimes our intense fascination with whatever we are exploring with our mind at that moment wins the war with our higher thought processes that understand that we should acknowledge your existence and carry on the normal social protocols. We rarely can control this addiction that our mind has latched onto. The only advantage I have is that because of my lack of a diagnosis earlier in life i developed a drug and alcohol problem that led me to a 12 step program. that program helped me to see my addictive behaviors. After my diagnosis I was able to apply those 12 steps to the Autistic Perseverations that try to dominate my mind. I don’t always win but I do win far more often than my husband and most of my children which makes me the one person in our family that can walk away from my perseveration of the hour to take care of family needs.

      What all these so called experts need to do is actually talk to us about what it is like to be us and stop lumping all of us into a single stereotype. I honestly think the greatest thing about being an Autistic Person is that we don’t tend to need to be part of a herd and it is really annoying when people with a herd mentality seem to need to put us into a herd defined by them. Autism is not much more than individuality on steroids! What is frustrating to most of our kids is the fact that they are not allowed to be individuals because of ridiculous social norms and their inability to make their perception of the world understood so that they can be accepted the way that they are.

      So for all of you “Autism Experts” out there I invite you to have a conversation with me and my kids if you want to understand how some autistic people think. Then I strongly suggest that you have a conversation with many other Autistic people so you have an idea how more Autistic people think. When you are done please assume that you know how the Autistic people that you have spoken to think and not that you know how all autistic people think. Once you actually accomplish this you will have a greater insight about how we think. I would never presume to think that my youngest son experiences life just like I do. I have no idea what it is like to be Joshua any more than Joshua has a clue what it is like being me. The difference between an NT mom and an Autistic mom is that an Autistic mom does not presume to understand what her child is feeling until the child tells her what he/she is feeling.

      • Merri Jamieson

        Right on! I am working with a seven-year-old child with autism and his family. I want to give the family articles and books to read, not research, that will help them understand how to approach there son as an intelligent being. Any suggestions? Please respond to [email protected]

    • Catriona

      Athena, can you contact me?

      [email protected]
      [email protected]

  • Ann D

    This description reminds me of the victims who developed Parkinsons after sleeping sickness that Oliver Sacks described in his book Awakenings. It was helped by L-DOPA.

  • Marcus

    Regarding the perception of time comment, I wonder whether that is related to having a photographic memory..

  • Collin

    The method by which this book was written is Facilitated Communication, which has been proven not to work. The messages produced by Autistic people using this technique are not their own, but dictations they receive from nonverbal cues the collaborators don’t realize they’re providing.

    Therefore this book is utterly unreliable and meaningless. And if the Simons Foundation isn’t aware of this fatal flaw, what else are they ignorant about?

    • Guest

      Collin, The method described in this article is NOT “Facilitated Communication.” Facilitated Communication is when the facilitator is holding the hand of the “author” and claiming to know where the author is trying to move the hand. You are right that this method has been shown to be false. It produces a sort of self-fulfilling prophecy.

      In this article, there is no mention of the mother holding the boy’s hand and moving it. It states that the boy himself is doing the pointing. So if you are desperate to assume that this boy didn’t write the book, you’ll have to find another argument against it.

  • Sally

    It is extremely important that we develop ways to negotiate between what we know can be characteristics of people on the autism spectrum, and the unique identity of each person. I work with students on the spectrum at a community college. Our challenge is to get to know each student, especially those who have disclosed a diagnosis, and to identify both the individuals strengths and challenges. Our goal at the college is to find ways to provide support for negotiating the challenges so that the individual can use his/her strengths and follow his/her interests. Athena and all, I am seeking information about the kinds of college based programs that best support students on the spectrum, recognizing the uniqueness of each individual.

  • Karen

    I have been fascinated by my son’s relationship to time and how much his unique perception of time must impact other areas of his life. My son is 10 years old with autism. Despite gains in many other areas, his concept of time remains very present moment focused and he expresses his inability to determine if something happened a few hours ago or a year ago, for instance. This seems to mean that he has to organize his memories in a different way than most. He appears to rely more on his energetic and sensory impressions of people and tries to relate his own experiences to a people-oriented memory system. It is a different, but not a worse way of operating in the world. In any case, I totally agree that this is a ripe area for research.

  • Guest

    Reading over some of the comments regarding potential FC and this book- I thought I’d just leave this here; its an excerpt from Temple Grandin’s review on http://www.dana.org:

    “When I received a review copy of The Reason I Jump from the publisher, I set this highly insightful book aside because both the foreword and the cover letter from the editor failed to provide a sufficient description of Naoki Higashida’s ability to communicate fully and independently. When I was later asked to review this book, I was confident that Naoki, a 13-year-old nonverbal child with autism, was not using the controversial method of facilitated communication, in which a person supports the wrist of the nonverbal person with autism. When this method is used, the facilitator is often the true author. Naoki’s book belongs to the other class of writings: those that come from nonverbal individuals with autism who can communicate fully independently with no wrist support.”

  • debbie

    As the loving mother of a 27 year old nonverbal autistic son, I am always seeking answers and insight to my sons world. Why is he calm, happy serene and loving one day and violently screaming and out of our control the next? What is going on in his mind that he is so ill at ease and harmful to himself? I wish I could have an answer to these questions and then perhaps I could begin to understand.

  • jenny

    Thank you for all comments i read. I thought autism kids they’re different reaction.I have twin boys autism, they’re pre-teen now, one is very calm and one became little mental disorder,his behavior change in just a minute.I have learn from them every day.

  • Merri Jamieson

    True facilitated communication provides a resistance for the typer to overcome. This allows for stability and better accuracy. It is NOT typing for the person. Many people who started with a facilitator now type on their own. This method is more in line with occupational therapy than anything else.

  • LisaD

    Unfortunately, there is no evidence (video, picture, etc.) of this boy successfully communicating, therefore how can we believe this is not another result of facilitated communication?

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