Naoki Higashida, Authorship and The Reason I Jump

As our film The Reason I Jump travels to festivals before its wider release, an old question starts to surface.  The film’s starting point is the book of the same title by Naoki Higashida, an autistic Japanese boy, who wrote it when he was 12 years old. And the question – one that has dogged Naoki since his book was first published in Japanese in 2007 – is whether he really is the author?

In this blog I look at my experience of researching and working with Naoki, his translators and other nonspeaking autistic writers – and why I came to the conclusion ‘Yes, he did’.

Naoki’s teenage writing is fluent, mature and perceptive, which has led some of his reviewers to wonder how much his original words had changed through the process of transcription and translation. The book certainly runs against the widely-held idea that autistic people lack a ‘theory of mind’ or that nonspeaking autistics are incapable of linguistic self-expression.  So I visited him in Tokyo. I didn’t want to make the film if I had any doubt about his authorship.

Naoki is now 26. Unable to fully participate in a verbal conversation, he still mostly communicates with the method he used to write the book [1], painstakingly pointing to the roman alphabet on a handmade letter board to spell out Japanese hiragana syllables, gradually building up words and sentences. He can type independently at a computer keyboard, but he prefers the physicality and focus the letter board gives him – and does both without any physical assistance. 

I found Naoki to be at least as philosophically sophisticated as his books suggest.  He gave strikingly thoughtful answers to my questions – whilst at the same time being subject to the distractions, impulses, and apparently random associations (which of course aren’t random at all), that characterise nonspeaking autism.  During our conversation he would repeatedly leave his desk and go to the window before returning to complete whatever phrase it was that had been interrupted by this impulse.  When I asked him what it was that drew him to the window, he typed “I am watching car tyres rotating” and when I asked why, he replied “They are like galaxies flowing”. It made me a little ashamed to have given any credence to the online skepticism about his capacity as a writer.

One of allegations made about the book is that even if it can be shown that Naoki can communicate via his letter board, his elegant writing is more likely the work of its translators, the novelist David Mitchell and his wife KA Yoshida.  There’s an absurdity about this claim because there’s an easy way to check – simply and  irrefutably.  The original Japanese version of The Reason I Jump is widely available and any serious critic could work with other translators to check the original against the English version.  Bilingual speakers could read the original and the translation and immediately expose subterfuge, additions or enhancements.  As part of making the film, I worked with a different translator to render the source Japanese of the English-version quotes I was using into literal English. It left me confident in the accuracy of Mitchell and Yoshida’s translation, and made me wonder why those willing to allege fraud would do so without taking such a simple step.[2]

So why, given there’s two long NHK documentaries showing Naoki write and type independently, and the original Japanese version of the book is internationally available, does the scepticism persist?  

The answer goes back to a 1990s-era controversy about ‘Facilitated Communication’, a method which also uses letter boards, but in which the subject’s arm or hand is supported by a facilitator as they point to letters.  After some apparently extraordinary breakthroughs, a number of controlled tests suggested that the communications were heavily influenced by the facilitator and involved an ideomotor effect. The initial hopes that FC might ‘unlock’ the lives of nonspeaking autistic people were seemingly dashed. 

But the publicity surrounding the 1990s studies resulted in a widespread rejection not only of Facilitated Communication, but of the possibility that nonspeaking autistics have language and comprehension.  Since those studies (which themselves were criticised for flawed design)[3], there’s a been a constant stream of research pointing to nonspeaking autistics acquiring advanced language skills [4].

Language and speech are different functions and we know that speech impairment does not necessarily mean the loss of language.  As speech therapist Elizabeth Vosseller points out, speech is a motor function, and autistic people can often have apraxia or lack of motor control, which is why her own work tries to support communication through gross motor (pointing) rather than fine motor (speaking) skills.   

The critique of facilitator influence in Facilitated Communication pointed to the potential dangers of a particular method. But the generalisation of that critique to all spelled communication has led to nearly three decades in which the voices of nonspeaking autistic people and other nonspeakers have been seen as unreliable.

Naoki doesn’t use Facilitated Communication.  No-one is supporting his arm or hand when he points to letters or types at a keyboard. But his writing is nevertheless wrongly linked to the debates about it.  In a later book [5] he goes to some lengths to describe his difficulties with spoken language, which he likens to a sea in which he is tossed about like a small boat in a storm. He describes the letter board as a means to ‘lock down’ words and phrases which would otherwise ‘flutter away.’ 

This is also how I have come to understand what is going on for Ben and Emma, two of the subjects of my film, who also use a letter board without physical support.   Having spent a lot of time with them, analysed my own footage of their interviews, I’m in no doubt of the authenticity of their communication. There’s one moment in the film that shows this particularly clearly: we can hear Emma struggling to say the word ‘everything‘ as she fluently spells it using an ipad keyboard.  For me that shows the spelling is intentional and gives in insight into the way language works for her.  This is echoed by a recent study published in Nature of letter board use by nonspeaking autistics, which tracked eye movement and showed eye movement anticipating the spelling. [6]

Over time, and despite mounting evidence to the contrary, the attacks on Naoki and other nonverbal autistic writers have become more extreme.  Since early 2019, a concerted campaign has been underway to remove and rewrite the entries on Wikipedia [7] of Naoki and his books and other nonspeaking writers such as Tito Mukhopadhyay, Ido Kedar, Deej Savarese and Amy Sequenzia, ignoring the video evidence, academic research and personal testimonies that vouch for their authenticity.

In Naoki’s case, the impact of this campaign has made him withdraw from the public eye.  Instead, his answer to his doubters has been to write more books. It meant that, whilst he was happy for our film project to go ahead he didn’t want to appear in the film, preferring to communicate through his writing rather than through media.  This is the reason the film is not focused on him or his communication method – but instead uses his words to help immerse us in the subjective experience of different nonspeaking autistics around the world. 

We turn our backs on the growing literature by nonspeaking autistic writers at our peril.  As part of the research for the film I read much of their work, and also that of other autistic writers such as Donna Williams.  Writing independently of each other there are nevertheless many common threads in the sensory experiences they describe. 

Such is the prestige we set by spoken language, the neurotypical world seems to have a vested interest in the idea that nonverbally autistic people lack cognition. Its impulse is to focus on their behaviours, rather than to try and understand radically different forms of perception and experience. Perhaps it’s time to recognise that these voices are telling us something important, that expands our ideas not only about autism but about humanity.  And that they may lead us towards a world in which more nonspeaking autistic people are able to live full and meaningful lives. As Naoki himself writes: “To live my life as a human being nothing is more important than being able to express myself’


NOTES

[1] If you want to see how Noaki communicates there’s a short extract from a longer NHK documentary here: https://vimeo.com/498860739.  The situation shown here, Naoki sitting at his desk with his mother beside him – but without physical contact – as he spells out or types words, is similar to the circumstances in which I met him.

[2] Interestingly, some of those who doubt Naoki’s authorship have taken the trouble to compare the Japanese and English translation and acknowledge it is ‘generally an accurate translation’ – see: https://journals.lww.com/jrnldbp/Citation/2014/10000/Commentary_on_The_Reason_I_Jump_by_Naoki_Higashida.7.aspx

[3] See for example: https://journals.sagepub.com/doi/pdf/10.1177/1540796914555581 for a more detailed history of FC research and the media treatment of it.

[4] A research list is published here: https://unitedforcommunicationchoice.org/wp-content/uploads/2019/01/20190127-UCC-Supportive-Research-List.pdf  

[5] Fall Down Seven Times, Get Up Eight, by Naoki Higashida.

[6] https://www.nature.com/articles/s41598-020-64553-9

[7] More on one perspective of the Wikipedia edits here: https://neuroinsurgent.home.blog/2019/07/10/fc-rpm-and-how-wikipedia-became-complicit-in-silencing-non-speaking-autistics/

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