Director Jerry Rothwell on ‘The Reason I Jump’
Naoki Higashida’s descriptions of a world without speech provoke us to think differently about autism. For most of history, nonspeaking autistic people have been considered less than human: ostracised within communities, banished to institutions, even in some ages and places, killed en masse. Stigma is still a feature of most autistic people’s lives.
But Naoki’s evocative descriptions of the maelstrom of thoughts, feelings, impulses and memories which affect his every actions lead us, as David Mitchell writes in his introduction to The Reason I Jump, to understand that ‘inside the… autistic body is a mind as curious, subtle and complex as any.’ Naoki debunks the ideas often held about the autistic spectrum – that at one end there are geniuses and at the other fools. Instead he describes a magnificent constellation of different ways of experiencing reality, which for the most part, are filtered out by the neurotypical world.
For a filmmaker, this offers an opportunity to use the full potential of cinema to evoke these intense sensory worlds in which meaning is made through sounds, pictures and associations, as well as words. While no film can replicate human experience, my hope is that The Reason I Jump can encourage an audience into thinking about autism from the inside, recognising other ways of sensing the world, both beautiful and disorientating. I hope the film takes audiences on a journey through different experiences of autism, leaving a strong sense of how the world needs to change to become fully inclusive.
Why was making this film important to you?
The idea for the film came from producers Stevie Lee and Jeremy Dear, who are the parents of an autistic teenager (Joss, who is in the film). They had read Naoki Higashida’s book The Reason I Jump which had transformed their understanding of their son and they wanted to make it into a film.
When I was approached to direct it, I felt a strong affinity with the project. Autism has been very much a part of my life – both in my extended family and in my work. Back in the ‘90s I set up participatory media projects focused on disability rights and self-advocacy by people with learning disabilities – and my film Heavy Load in 2008 (also produced by Al Morrow) was about a punk band, some of whom were autistic. I’ve always been disturbed by society’s response to nonspeaking autistic people – who are constantly underestimated with labels like ‘severe’ and ‘low functioning’ which, as well as being misleading about people’s capacity to think and understand, also indicates a kind of hopelessness which increases marginalisation.
When I first read Naoki’s book it took me by surprise. So fluent and perceptive was the writing of this teenager that I – like some of Naoki’s reviewers –wondered how much his original words had changed through the process of transcription and translation. It certainly ran against the established idea that autistic people lack a ‘theory of mind’, something that had never matched with my experience anyway. Meeting Naoki was revelatory too. His capacity to use his alphabet board unaided to type thoughtful answers to my questions – whilst at the same time being subject to distractions, impulses, and apparently random associations, was extraordinary to observe. During our conversation he would repeatedly stand up and go to the window before sitting down again to type the remainder of whatever sentence 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 watch the wheels of cars’. When I asked why, he typed ‘They are like galaxies rotating’. Think of that, next time you’re waiting for a bus.
Once you recognise the capacities of nonspeaking autistic people and how they have been systematically overlooked, then our terrible history – of institutionalisation, behaviour modification, killings – becomes all the more shocking. I hope the film can play a role in changing those misconceptions. The idea of neurodiversity – that we all perceive the world in subtly different ways–- is a powerful and important one, which I think helps build the bridges and solidarity we need for a more inclusive world.
What were the challenges and opportunities of using Naoki’s groundbreaking book as a foundation for the film?
In previous documentaries, I’ve tended to adopt a method which first finds a shape for the film and then looks for narrative in whatever situation I’m filming, gradually building a more and more detailed structure through the production process.
But the book The Reason I Jump is organised as answers to a set of 58 questions about autism. It has no plot and few characters other than Naoki and his family. It’s beautifully written, but initially the idea of turning it into a film felt quite daunting – especially as the option of making the film about Naoki wasn’t available, because Naoki didn’t want to appear on screen; he wanted his writing to stand for itself.
So the film takes the book as a starting point and riffs on its themes and ideas. In the end, this became a strength and led perhaps to a more unusual film than an issue-led biopic. It felt to me that the film’s structure should be a developing revelation of Naoki’s ideas about autism whilst immersing us in the everyday experiences of other nonspeaking autistic people in different parts of the world. Naoki’s words apply to himself – and as he says himself, he can’t claim to speak for all autistic people – but they do provide a nudge to think about the things we’re seeing on screen in a different way.
Not having a single story was a first for me – and really changed the production process. This process felt much more instinctive and responsive to the immediacy of whatever we were filming. There were plenty of dead ends, but as we developed the film a shape emerged: one which took an audience from an intense visual and auditory world to one of sensory overload through to finding a way to communicate, and to fighting stigma. I thought it was important to explore experiences of autism in the global south and so sought out contributors in Africa and India as well as the US and UK and, rather than intercut their stories, I gave them each a section where we can spend time with and get to know them.
Can you tell us about the research process?
Our research took us into the literature of brilliant writing by other nonspeaking autistics – Tito Mukhopadjyay, Ido Kedar, Amy Sequenzia – and also to first-hand accounts about sensory experience from other autistic writers – such as Donna Williams’ Autism and Sensing and Temple Grandin’s Thinking in Pictures. There are common themes to this writing – describing a world in which removing the neurotypical filters points us towards aspects of human experience that many of us only half sense. Those ideas are echoed in some of the neuroscience around autism – and we spoke to Prof. Henry Markram about his ‘Intense World’ theory and looked at research around language and motor-sensory issues. We tried to build as neurodiverse a production team as we could – and also drew on an advisory group of autistic people who were incredibly supportive and helpfully provocative at key moments.
What do you hope the film will achieve?
I hope the film is part of a shift in the way we see autistic people who don’t communicate in a neurotypical way – away from the simplistic and damaging ideas of ‘mild’ and ‘severe’, ‘high functioning’ and ‘low functioning’ and towards an understanding of the constellation of individual strengths and challenges people face. I feel that all of us can identify with some of the stars in that constellation, and that recognising this can help build solidarity with and support for people, and construct a more ‘autism friendly’ world.
Jerry Rothwell, Production notes, 2019
THE REASON I JUMP
Director: Jerry Rothwell
©: The Reason I Jump Limited, Vulcan Productions Inc., The British Film Institute
an Ideas Room, Metfilm, Vulcan Productions and Runaway Fridge production Made with the support of the: BFI’s Film Fund
International Sales: Met Film
Executive Producers: Stewart Le Maréchal, Jonny Persey, Peter Webber, Jody Allen, Paul G. Allen, Rocky Collins, Jannat Gargi, Ruth Johnston, Carole Tomko
Co-executive Producer: Sara Edelson
Executive Producer: Lizzie Francke
Producers: Jeremy Dear, Stevie Lee, Al Morrow
Co-producer: Sam Payne
Production Co-ordinator: Karen Simon
Location Managers: Shernaz Italia, Neelima Goel, Amadu Lamrana Bah
Casting Director: Gemma Sykes
Based on The Reason I Jump by: Naoki Higashida
Translated by: David Mitchell, K.A. Yoshida
Director of Photography: Ruben Woodin Dechamps
Graphics: Hugo Moss
Editor: David Charap
Titles: Hugo Moss
Colourist: Gareth Bishop
Composer: Nainita Desai
Music Supervisor: Sarah Bridge
Sound Designer: Nick Ryan
Sound Recordist: Sara de Oliveira Lima
Re-recording Mixer: Ben Baird
Supervising Sound Editor: Nick Ryan
Dolby Technical Engineer: Rob Karlsson
Jim Fujiwara (the boy)
Jordan O’Donegan (voice of the book)
A Picturehouse Entertainment release
Content warning: this film contains flashing images.
Autism is a neurological variation that occurs in about one percent of the population. According to the National Institute of Mental Health, Autism Spectrum Disorder is a group of complex disorders related to brain development. The word ‘spectrum’ is used because there is no set characteristic, gene, or biological marker expressed consistently by every autistic person. Common markers of autism include variations in communication and social interaction, and repetitive patterns of behaviour, interests or activities. However, every autistic individual is different. The formal diagnosis of ASD has changed significantly with research and science, and will continue to evolve.
Look at ‘Understanding the Spectrum’ (https://the-art-of-autism.com) to see a visual representation of the spectrum.
Apraxia is the inability to initiate, stop or slow down a sequence of movements on demand. It affects the motor planning process it takes to execute movement.
When an autistic is triggered by an external or internal stimulus that causes their baseline level of a regulated state to become no longer balanced.
Identify-first language refers to identifying language where the condition, in this case ‘autism’, comes before other descriptors, like ‘autistic person’ or ‘Deaf person’. Many autistic people prefer identity-first language in contrast to people-first language, which places the person before the condition or diagnosis, as in, ‘person with a disability’. As with any group that faces stigma or marginalisation, the best way to get identity language ‘right’ is to ask and then honour a person’s individual preference with regard to how they identify themselves.
An individual who is minimally speaking can communicate longer and deeper thoughts by effectively pointing to letters in order to spell, and can communicate some basics with speech.
Nonspeaking refers to individuals who do not have speech as a reliable or consistently reliable means to communicate their true thoughts. Use of speech is a motor skill, not a measure of an individual’s capacity for comprehension or communication. ‘Nonspeaking autistic’ is the language preference of the people whose stories are being told in The Reason I Jump. It is identify-first and is preferred over ‘non-verbal’, since ‘verbal’ in Latin translates to ‘without words’. Though they do not use speech to communicate, the people in the book and the film do have a lot to say.
This term refers to the myriad ways in which brains function differently from what is considered ‘typical’, without assigning judgement to those differences. Autism is one form of neurodiversity.
Refers to brains that function within the ranges of what is statistically considered to be within the range of ‘normal’.
An individual who is an unreliable speaker is not always able to use speech to communicate everything they want to say but wants others to know that they appreciate their effort to connect and recognise that they can’t always know if there is more to share.
The Human’s Guide to Supporting Autistics
Written by Autistic Subject Matter Experts: Adam Farrell, Alex Cormaney, Charlie Colligan, David Knight, Gordy Baylinson, Ian Nordling, Nick Moore
Autistic Self-Advocacy Network (https://autisticadvocacy.org) ‘The Significance of Semantics: Person-First Language: Why It Matters’
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