by Alex Elder
“We set out to immerse the audience in nonspeaking peoples’ worlds, much in the same way that the book immerses us in Naoki’s world.”
Imagine a daily life in which your faculty of speech is taken away. Explaining that you’re hungry, or tired, or in pain, is now as beyond your powers as a chat with a friend. After you lose your ability to communicate, the editor-in-residence who orders your thoughts walks out without notice. A dam-burst of ideas, memories, impulses and thoughts is cascading over you, unstoppably. Your mind is a room where twenty radios, all tuned to different stations, are blaring out voices and music.
The radios have no off-switches or volume controls, the room you’re in has no door or window, and relief will come only when you’re too exhausted to stay awake. You are no longer able to comprehend your mother-tongue, or any tongue: from now on all languages will be foreign languages. Even your sense of time has gone, rendering you unable to distinguish between a minute and an hour.
- Abridged from David Mitchell’s introduction to 'The Reason I Jump' by Naoki Higashida
When you think about it, verbal communication is an astonishing phenomenon. The system of meaning transfer you use to chat rubbish with your friends or that some, unfortunately, use to spread dangerous conspiracies or hate is the very same medium that has allowed humans to master their surroundings via cooperation and information sharing. Verbal language is unique, no other species can do it and it's a characteristic that is definitely taken for granted by neurotypical humans.
Jerry Rothwell's new film adaptation of Naoki Higashida's bestselling book, The Reason I Jump, attempts to help us understand the sensory world of nonspeaking autistic people. It's a world where individuals are shut out of the arena of speech that most of us use in our every waking hour. It's a world without much in the way of a hierarchy of attention and where a memory of something you experienced as a toddler can be as vivid as the events of yesterday in your mind.
When I watched The Reason I Jump in early 2020, I was instantly moved to tears and, once the sobbing subsided, I began to write a glowing review for RAR's CPHDOX coverage. In the course of writing about it, I discovered that the authenticity of the film's source material was hotly contested online.
Skepticism around whether Higashida could author such a book originates from the misconception that The Reason I Jump was written through Facilitated Communication - a controversial technique involving physical support of the arm, opening up the possibility that a facilitator could unconsciously influence statements by nonspeakers by guiding their arm towards certain letters on a letterboard.
As this footage from the NHK documentary What You Taught Me About My Son shows, Naoki does not use Facilitated Communication and writes independently. But initially, before I’d researched further, I was mortified to find, (if Wikipedia is to be believed), that the book could potentially be a forgery by Higashida's mother or a highly embellished translation of the Japanese text. I felt compelled to reach out to the director to get his take on it and to restore my faith in the authenticity of Naoki’s words.
The following interview is a transcript of a Zoom discussion we had around authorship and methods of representing a neurodiverse experience in sound and vision.
(Disclaimer: The views expressed in this article do not reflect the views of the Radical Art Review or its editorial staff)
Hi Jerry. Thanks so much for taking time to speak to the Radical Art Review about your new film. The Reason I Jump must have been quite daunting as a book-to-film adaptation. How on earth do you take a book structured like a bullet-pointed FAQ and build that up into a feature film structure? It can’t be the most straightforward of jobs?
[The book’s 58 chapters all have titles like “Why can’t you sit still?” or “Why do you ask the same questions over and over?” with each of Naoki’s responses to each question taking 1-2 pages.]
JR: Yeah, I’d say in films I'd enjoyed watching or made up until that point, words and story and character were all really important... Naoki's book doesn't ditch words but it certainly ditches character and plot. So what we set out to do is to let Naoki's text act as a prompt for us to think about certain things and to immerse the audience in peoples’ worlds, much in the same way that the book immerses us in Naoki’s world.
In a way, the book, at that point, fell into a secondary place and the film is led more by the characters we meet. That was important because I really didn't want the neurodiverse people we see in the film to be just examples; for the book to say “I see the world like this” and then we cut to someone who sees the world like that. You know, trying not to make those - for want of a better word - characters just case studies of the book. That was a danger, which is why the young Japanese boy’s journey that loops through the film was really a way to give the book an identity away from the film’s participants.
I was interested in the ‘set piece’ of the young Japanese boy [played by nonspeaking autistic actor Jim Fujiwara] walking throughout the film that you just mentioned. It’s something of quite high artifice for a documentary. Did you feel like you needed these scenes to give a visual representation to an author who was absent from the film?
JR: We were met with the challenge, early on in production, that Naoki Higashida didn’t want to feature in the film, but we were making a film based on his book. I felt like the book needed a place to somehow be visually present within our film. There were images in Naoki’s book that led me to those scenes and David [Mitchell, the book’s translator] talks about how the book, for him, was like an emissary from a country where his autistic son lived. So the walking boy feels like a metaphorical figure who, in some ways, represents the book but also could be David’s son or could be Naoki at the age he wrote the book. It’s ambiguous.
You mentioned you had some correspondence with Naoki early on in the process. What was the initial conversation like when you reached out and explained you were adapting his book into a feature?
JR: I, initially, underappreciated how much Naoki didn’t want a film made specifically about him. When I was approached to direct the film, at first, I thought, “Obviously, this film needs to be about Naoki and about finding his voice and the process of writing and his life;” that was the film that I had in my head but Naoki isn’t so keen on the limelight.
Nonetheless, I went to visit Naoki so I could be sure that the words were his words and that he was as he came across in the book. When I first read the book, I was taken aback by its poetry, its sophistication, its awareness of others. People often attribute to autism that there’s a lack of a theory of mind but this book is FULL of a theory of mind - Naoki spends a lot of time imagining what it must be like to be neurotypical in the book.
When I met him, it was an extraordinary experience. Partly because, like many other nonspeaking autistic people, Naoki is bombarded by distracting sensations and memories; he'll utter a sentence repeatedly that relates to something in the past, he'll get anxious about the fire escape and whether it's shut, he'll go to the window and look out of it. But whilst all this is happening, I’m still having a conversation with him via a Japanese translator. He might get distracted but then he would come back to the desk and point to characters on his letterboard independently. It’s a laborious process, one question could take 20 minutes to answer, but his answers were illuminating, coherent and really poetic.
Related: CPH:DOX - Highlights from the sofa
When I asked him why it was that he kept getting up to look out the window, he said it was to look at car wheels. So I asked, “Well, what fascinates you about them?” And he said that “they are like galaxies rotating.” There’s no question, to me, both about the sophistication of his thoughts about himself (and others) and that he was capable of being the author of The Reason I Jump.
But on Wikipedia, Naoki’s described as the ‘supposed author’ and the book’s sometimes attributed to David Mitchell and that’s so lazy! You can go to Japanese Amazon and buy the original book and check what was published in Japanese before David and his wife Kay came across the book and translated it to English. I did that, for the stuff we were using in the film, and it’s a really literal, accurate translation. So that suggestion really drives me nuts.
When I watched your film for CPHDOX, the first thing I did was to Google this book that I hadn’t read yet. At the top of the Wikipedia page, at the moment, there’s a quote from Jens Hellman, a psychologist, who says the book resembles “what I would deem very close to an autistic child’s parents’ dream.” I wondered why you think this reaction has come from certain areas of the academic community?
JR: Yeah... it hasn't just come from academics. I think there's a very concerted campaign by a few Wikipedia editors from a particular area of this argument that see spelling as a communication method as anti-science. A lot of these comments come from people who aren’t spending time with those who are using letterboards to communicate.
There’s something very counterintuitive about the way that autistic people have not had a huge role in the research around autism. One of the things that's happened with much more writing, visibility and comment from autistic researchers is that we're seeing autism much more in terms of its sensory impact. As soon as you see autistic behavior as a response to a world that’s very different sensorily from the neurotypical one, then you start to see that certain behaviors that we might neurotypically read as indicating a lack of mind need to be understood in a different way.
Early studies on Facilitated Communication were very conclusive, but they were undertaken in particular experimental conditions with small sample sizes and people tend to ignore studies that have happened since. There are plenty of studies that show nonspeakers’ awareness of language, including one which showed that, when spelling with a letterboard, nonspeaking spellers’ eyes are tracking onto the next letter they’ll point to before they’ve finished the action of pointing to the letter before. I also think that neurotypical people find it hard to understand the needs of some autistic people for a familiar sensory environment to be able to perform communication.
Totally. In order to authentically convey meaning, a laboratory environment might not be best for some autistic individuals.
JR: Donna Williams, an autistic writer, wrote a number of memoirs and her descriptions of that process exactly mirrors what Naoki’s talking about. There’s so much commonality in their experiences. In her book, Autism and Sensing, she described living life, up until the age of around eight, in a kind of sensory stage in which, in a way, you and the universe are indistinguishable. I defy a neurotypical person to write with such detail about this stuff! It’s so specific to a certain kind of experience. If The Reason I Jump was ghost-written by Naoki’s mum, she’s a very serious literary force!
It’s kind of a conspiracy theory, isn't it? “None of these people are doing what they appear to be doing, they're actually being guided by some other malignant force.” That’s sort of a bizarre argument, I think.
It’s not something that Naoki practices but, undoubtedly, there are some valid concerns around Facilitated Communication (FC), the method that came before spelling as a communication method. I’m guessing that’s the origin for a lot of this skepticism.
JR: We know that a lot of nonspeaking autistic people have sensory motor skills issues and that speech is a motor skill. What both the methods you’ve mentioned are doing is trying to take communication out of the ‘fine motor’ skills of shaping your tongue and into the ‘gross motor’ skills of moving your arm. So, if you’re going to learn how to do that, you’re probably likely to go through a stage of learning that requires physical support, whilst you’re shown how to do it, before moving on to communicate independently. As the early research into FC showed, the stage requiring physical support can make the communication unreliable. But the question is: are we going to stop people learning how to communicate with a letterboard because of this? The implications of that is that you're denying a generation of people access to communication.
I don’t doubt the goodwill of those that explored the dangers of FC at the beginning - and some poor use of this method resulted in travesties, but I think the baby was thrown out with the bathwater and the consequence of all of this has been to deny some autistic people a voice.
Every time I’ve watched your film I have been sobbing incessantly. One part that always gets me is when Ben [one of the two nonspeaking individuals in the US Jerry interviews] says that school before he went to an establishment that taught spelling as a communication method was a denial of his civil rights.
JR: I tried to not cut the letterboarding as much as possible, so people didn’t feel that I’d edited those sentences into existence. There’s a bit where Emma [the other American interviewee] is using a remote keyboard on an iPad and she's typing the word “everything” and saying the word “everything” as she's typing it. I've analysed that sequence in slow motion and it's clear that a facilitator isn’t moving the keyboard to ‘make’ her say something.
You’d have to be a mastermind of suggestion to pull that off undetected!
JR: Yeah! Can you imagine how difficult that would be?
The other side of the coin is that all communication, actually, is a collaborative act anyway. We’re constantly echoing and so we shouldn't discount all communication that responds to a prompt.
I think Naoki not wanting to be involved was quite a nice happy accident, actually, because then you involved these five families across four continents in the film that all shed so much light from so many different cultural contexts on what living with autism is like. Was there any highs or lows of that process? I assume it takes some time to get everyone used to having cameras around?
JR: Our approach was very much not to direct but to just hang out with people in the situations that happened as we were there. It was very much about working with a small crew which was usually just me, the DOP, Ruben, the sound recordist, Sarah and a camera assistant at times (but often not in the room with us). Even though we were running 16 tracks of audio, to capture 360° sound, we were really a minimal crew. We tried to just be observers in the space and also think about viewing the space through our contributors’ eyes.
It definitely paid off - there’s lots of shots of family members embracing or stuff that you might not have gotten on film if you’d ‘crewed up’ massively.
JR: The nature of working with nonspeaking autistic people is that they’re likely to be relatively unpredictable to a neurotypical filmmaker and you need to go with that unpredictability. You can't direct or say, “walk over there,” you know?
Some of the, albeit minimal, stuff you do layer on top of the footage really helps to explain the sensory overload you probably experience as an autistic person, especially in the scenes with Joss; like the sound of wind rushing or the hum of the electricity boxes he can hear. How did you go about that process of sound design to make it so visceral?
JR: The sound designer on the film was Nick Ryan. Nick's done a lot of work around the neuroscience of sound and is synesthetic himself so, for him, sound and image have a big overlap. Synesthesia is very common in nonspeaking autistic people as well. So I think he had an affinity with a way of experiencing sound that was maybe not neurotypical that he could bring to the film. It was his idea, early on, to record this film in 360° sound. And I said, “Yeah, of course… erm but what is that?”
We mastered the film in this Dolby Atmos system which enables you to place a sound anywhere in the cinema, pretty much - 128 different positions. The importance of that was to be able to highlight sounds that were in the space but that weren’t necessarily foregrounded in a neurotypical way; to really have a sense of sound as unfiltered, unlike the way that most of us can filter and prioritise sound sources.
Like a non-hierarchy of sound?
JR: Exactly. So we recorded 360° in all of these spaces. We also sometimes ran the score through sound imprints of the rooms we recorded in, so it’s almost as if the piano you hear is ‘in the room’ alongside all the rustlings or sounds of feet on the floor.
In the rain sequence in the film, a lot of the sounds we used were analogous to rain rather than using the sound of rain itself. Naoki writes about how, to understand that it's raining, he has to go through all of his past memories of rain falling on him in order to arrive at the concept of rain; completely unlike the instantaneous conclusion for neurotypicals of, "Okay, it's raining now." In the same way, Nick took lots of sounds of things that sounded like rain: crinkling paper or tapping on a table or whatever and used them to sound design this sequence. It’s little things like that which were used to try to shift your perspective on the sound of the film.
The big shame of Covid, really, is not being able to show the film in an Atmos cinema - as it should be but we are offering the film with a binaural stereo mix which gives a hint of the 360 feel through headphones, luckily.
‘The Reason I Jump’ was released on January 8. It can currently be viewed online across the US ahead of a forthcoming UK release. Find out more.
Alex Elder is a writer and 'content farmer' interested in the venn-diagram of film, art & cultural theory. You can read some of his ramblings on Medium.