Perhaps you’ve wondered why autistic people sometimes obsess over certain things like blowing bubbles or rubbing a bracelet. The reason repetitive actions are comforting is because they protect them from uncertainty.
It’s one of several fascinating insights from The Reason I Jump, a Sundance Film Festival award-winning documentary about the experience of life for non-verbal autistic people.
The film, which is inspired by the international bestselling memoir of the same name (see panel), brings you inside the world of several autistic people from across the world, including England, the United States and Japan. It draws on the writings of Naoki Higashida, the Japanese author of The Reason I Jump, translated into English by West Cork-based author David Mitchell.
In the film, a Japanese-British child actor, Jim Fujiwara, appears intermittently in scenes, as Jordan O’Donegan recites the words of Higashida in a voiceover; Higashida contributed to the research of the film, but didn’t want to appear in it himself.
“The book changed the way I thought about autistic people,” says Jerry Rothwell, director of the documentary. “It re-frames the way we see autistic people who don’t speak, as responding to a really intense sensory universe in which sounds, sights, memories are experienced with an intensity that a neurotypical person doesn’t experience. That’s what we were trying to do with the film – to make it a filmic equivalent, to explain how they see the world.”
Something that emerges from the documentary is that autistic people experience time and memory differently. Time doesn’t appear to be a continuous line. There are no clear boundaries between memories, which have a habit of rapidly invading the minds of autistic people, throwing them out of kilter. A childhood memory experienced when three or four years old, for example, can be as real in the imagination as something that happened half an hour earlier.
“When I met Naoki – who is now 28 – he is still subject to being overwhelmed by sensory input and memory,” says Rothwell. “Things will propel his body to get up, walk around, jump around and fixate about something outside the window. At the same time, he’ll be having a conversation with you and will come back to his letter board, which he uses to communicate, where very slowly a sentence will emerge.
“It’s an extraordinary thing to witness. It makes you realise how complex human beings are. How our neurotypical filters – by which we make sense of the world and engage in conversation – are complex things.”
In the book, Naoki is a very perceptive observer of the neurotypical. “He’s not just describing his own experience. He’s at an age – 12 or 13 – where he’s realising that maybe he’s not the way other people think about him. He’s starting to realise there’s a difference between how he thinks he is and how other people think he is.
“He’s noticed that neurotypical people seem to organise their memory in a linear way. The past is further away in some way, but for him he describes it as being like a pool of dots. At any moment, any dot – or any memory – might rise to the surface.”
Another revelation from the film is the way it delves into panic attacks. When the senses and memories of an autistic person appear to be overloaded, it can bring on a feeling of hopelessness and a sense of “drowning in a flood of words”, as explained by Higashida.
“He describes his experience of a meltdown in the book as a response to a sensory overload, something that is overwhelming whether that is a sound or more often an emotional overload,” says Rothwell. “It’s like his world is collapsing. He describes it as being like being overwhelmed by this tsunami. When he comes out of it, he surveys the wreckage that has been created and he feels terrible about it.”
The British filmmakers says we often judge people from external behaviour without thinking about what that external behaviour is a response to.
“We live in a world that is very organised around the neurotypical experience. For someone like Naoki a particular sound or distraction or surprise or something that makes you feel very anxious about the security and safety in your world are felt very intently. There is an understandable kicking in of fight or flight responses. What’s great about the book is that you’re getting that first hand from somebody who experiences it in quite a lucid way.”
- The Reason I Jump is playing in select Irish cinemas from Friday, June 18
In 2007, Naoki Higashida published a short autobiographical book in Japan about his experiences of life as a 13-year-old boy with non-verbal autism. The book became a New York Times bestseller after it was translated into English by the renowned novelist David Mitchell and his Japanese wife Keiko Yoshida in 2013. Mitchell, who lives near Clonakilty in West Cork, has an autistic son.
Higashida’s book – which is loosely framed around 58 questions and answers with Higashida – challenges some of the myths and stereotypes about the differences between non-verbal autistic people and neurolinguistic people; for example, autistic people have emotions and emotional intelligence just like neurotypical people – both like to laugh and are prone to despair; both read the emotions of the people around them.
The book has, however, attracted controversy, as critics question the method Higashida used to write it. Higashida’s mother helped him type out the memoir by allegedly guiding his finger towards a letter board, a technique which is known as facilitated communication. As Mitchell says in Jerry Rothwell’s documentary: some people believe Higashida hasn’t written the book or if he did he couldn’t be fully autistic. Rothwell refutes the scepticism.
“When Naoki writes and communicates, there is nobody supporting his arm,” says Rothwell. “Another thing I did in my research is I went back to the original Japanese book to see to what extent the novelist David Mitchell upped the ante in his version, and actually the translation is incredibly faithful.
“It’s a very counter-intuitive experience, but autistic people have very coherent language [skills] and understand far more than they appear to understand. Secondly, that given the right tools people can communicate and use language in very sophisticated ways.
“There’s an idea that language is as instinctive for humans as building a web is for spiders. It’s not something that you necessarily have to be taught the grammar of. You imbibe it. That’s my experience of many non-speaking autistic people – that they have very sophisticated understanding and a lot to say if you can get to it.”