****Note the language in this writing – I have been exploring story telling by autistic individuals, and many of the adults I have been listening to have shared that autism is a significant part of them as human beings, so they prefer to be referred to as Autistic people instead of People with Autism. This is relating specifically to the many autistic voices I have heard share this language, so if you are autistic and feel differently I apologize and am open to listening to other opinions.****
As a child I loved stories; my mom used to read to me at night before bed, and once I was older you could find me stuck in my Harry Potter books at all times in the day. I loved learning new things and diving into different worlds.
Once school increased the amount of reading we had to do however, I lost the love for reading. I have always been someone who is a slow reader. I struggle with absorbing the meaning of the words in a story if I am not reading with 100% focus. And for a simple fiction book, you don’t need to absorb every single word, but with stories read for school book reports, and then heavy reading of articles and textbooks in both my bachelors of science and my Masters in Occupational Therapy…. I had a hard time keeping up with reading.
All this to say, as much as I love the idea of joining a book club, I have never been part of one because I have always felt like I would be behind and not be able to be part of the group conversations.
The group of Occupational Therapists that I work with (in one of my jobs) decided to start a book club so we can keep each other accountable to keep learning. As we are all super busy, we chose a book and a date a month away to talk about it. This not only allowed the super busy people to read when they had time, but I felt comfortable that I wouldn’t be behind during this book club conversation!
Our first book we chose was “The Reason I Jump: by Naoki Higashida. This book is a biography about Naoki Higashida who is was diagnosed with Autism when he was 5 years old and has limited verbal communication. The book was originally published in Japan in 2007, and in the foreword of this book, David Mitchell shares that he and his wife, Keiko Yoshida, found Naoki’s story when they were trying to navigate their own story with their autistic child, so they translated it into English.
In the story, Naoki Higashida answers 58 different questions about things that he and the autism community deals with. He also shares a short story and some reflections that he has created to share his experiences in a way his audience can try to understand and relate to. In the book he talks about various things that are common in the autistic community, such as why someone might not be able to make eye contact, or why they can’t sit still. His short story at the end is intended to make the audience relate to the feeling he has when he can’t communicate with someone the way he wants to.
In my personal research about this book, there are quite a few controversies about how much this book is truly Naoki speaking vs input from his mom, as he is said to be using facilitated communication. Facilitated communication is a discredited technique where the individual’s hand or arm is guided by a facilitator to help them type on a device. The controversies discuss how much of the words in the book are from Naoki vs how many are from the mother as she is facilitating the communication.
Does this discredit any of the story? It’s tough to answer this question, but I’m on both sides of the fence. To go along with the controversy, as someone who has worked on a research project about children using AAC (Augmentative and Alternative Communication), and who works with children who use various forms of AAC, I believe that there is a good chance that most of the story is from the view of the mom’s experience. It is very easy for a parent/adult to take over a child’s communication when they are using AAC, and in my qualitative research I did, a lot of the children went along with the adult’s words because it was easier to agree than to take the long time to type out/navigate the device to say what they wanted.
On the other hand, in our book club conversation, we all agreed that this was a good book for parents to read to be able to imagine the different thinking and life that their children might be experiencing. One of the major things I enjoyed in this book was the framing of the different symptoms or “quirks” that autistic individuals experience. Many of the parents that I have worked with have identified their goals being reducing their childrens’ stims or having ideas of a “normal” child. It is very difficult to explain to a parent that as much as sometimes these things can be hard, that an Occupational Therapist isn’t here to “fix” autism, but to explore different strategies that can help their child succeed. When Naoki talks about why he spins, why he doesn’t make eye contact etc, it gives a window into a different perspective of life which I hope allows for readers to understand that the individual isn’t broken or doing something wrong, but just experiences life differently. And that is OKAY.
Something that I did find a little bit problematic and one dimensional was the use of the word “we” when answering questions. This seemed to say that this one experience that Naoki has is similar to the lived experience of every human with autism. By grouping all autistic children together, I worry that it once again puts the diagnosis of autism in a box, with the expectation that every autistic person is the same. From my short amount of years as an occupational therapist who works with autistic children and adults, there is not a single person I have worked with who has the same experiences related to autism as another. Even the twins that I have worked with who both have autism are very different from each other. All this to say, just remember although this book is talking about the autistic experience, it is written as though it encompasses every person which is not necessarily true.
Final thoughts :
I am speaking from the perspective of someone who is not diagnosed with autism. I enjoyed reading this story and putting myself in the shoes of another person. I truly love books like this that allow you to see another perspective. The children that I work with teach me their different perspectives through their actions every single day and a lot of their experiences minorly related to Naoki, giving me ways to think, “is this how you are seeing the world or why you do certain things?”. Even though there are parts that generalize all autistic people as the same person instead of being on a spectrum, I will recommend this to my upcoming OT students to read just so they can open their minds to autism being a different way of experiencing life. I will of course provide them with a disclaimer about the book so they know to not pigeon hole their knowledge of autism to the experience of one child. I think it is always important to approach these kinds of books with caution to ensure they aren’t taken as complete fact. Remember – diagnoses are one part of the individual – it is an important part of the person, but every person has a very different experience of life, so cannot be generalized.
Moving forward I am hoping to continue to read more books from the perspective of individuals with a variety of different lived experience – if you have a recommendation PLEASE let me know in the comments! My goal is 12 books by the end of the year 🙂
If you have read this book, what are your insights and opinions?