From your point of view, the world of autism must look like a deeply mysterious place.
Naoki Higashida
At the age of thirteen, Naoki Higashida, a nonspeaking autistic child, used letterboards, or ‘a cardboard keyboard’, to write his autobiographical book, The Reason I Jump. With it he aimed to give an insight into how he perceived and experienced the world, and to open the lid on the fact that nonspeaking people have an experience and a voice that is worth listening to.
Fourteen years later, the documentary film of the same name uses the book as a framework on which to tell the story of living as a nonspeaking autistic person – with all of the accompanying issues, distress and, most importantly, joy, that comes with experiencing the world differently and more acutely than the people around you. Like the book on which it is based, and which it quotes throughout, the film is a seminal work that could, and should, have an enormous impact on the way that our society understands autistic people – particularly those of us who are nonspeaking.
When director Jerry Rothwell met with Naoki to discuss making the film, Naoki expressed that, although he was supportive of the project, he had no interest in appearing or opening his family up to that kind of intrusion. This was, perhaps, a blessing in disguise. As a result, the film developed into more than just the biography of one autistic nonspeaker, evolving into an exploration of autistic experiences that stretches across the world by telling the stories of five young nonspeaking autistic people:
Amrit Khurana, a young woman living with her mother in India, who expresses herself through her incredible artwork (which, in the duration of the film, is displayed in its own exhibition).
Joss Dear, a young man in England splitting his time between a specialist residential school and his parents’ home, who has a great love of ‘green boxes’ (electric metre boxes) as he can hear the electricity thrumming inside.
Ben McGann and Emma Budway, close childhood friends living in the US, who now use letterboards and typing to communicate – a vital and game-changing part of the film, as they use these tools to shift the narrative of autism and challenge long held misconceptions.
And Jestina Penn Timity, a young girl living in Sierra Leone, a country that often sees her as ‘possessed’ rather than autistic, who inspired her parents to set up a school for autistic children and work towards creating greater understanding and acceptance.
The film still pays homage to Naoki’s brilliant words, but, by widening the viewfinder, is able to tell a story that resonates across continents and teach a lesson that goes beyond one extraordinary young person.
As a (speaking) autistic person myself, I could easily go through this film, line by line, and go into details about every second that resonated with me, every quote that made my breath catch, and every sensory moment that made me go ‘oh’. But that’s not what this is about. However, my urge to do so is symbolic of one of the things I hope this teaches people – the way that autistic people experience the world. We hear everything, experience everything; our brains cannot filter things in the way that neurotypical brains do automatically. The struggle to break it down is real, as is the struggle for me to break down the film without just commenting on every line. I feel every second of this film – it all feels so unbearably important – but I want to encourage you to go and experience it for yourself, not give you a blow by blow account.
This also ties into an elements of the film that may be difficult for autistic viewers – it can be incredibly difficult to watch at times from a sensory perspective. The film is attempting to depict, for the neurotypical viewer, what it is like to experience the world through autistic senses, and it does that brilliantly. But for those of us who already experience the world in that way, this means it can be overwhelming and even painful at times. There were moments when I had to snatch my headphones off my head or shut my eyes before I became too overloaded.
And therein lies the dilemma in producing a film like this – its importance lies in what it can teach a neurotypical audience, but, in recreating our experience for those neurotypical senses, it can become painful from a neurodiverent perspective. It’s always a careful dance that can never quite stay within the lines of being all things to all people.
It’s a testament to the filmmakers commitment to understanding, hearing, and working with autistic people that they have been working on a relaxed version of the film, which aims to give warnings of upcoming sights and sounds, as well as trigger warnings for scenes of distress, to make the film more accessible for autistic (and other neurodivergent) people. Having seen the film twice – once at the BFI last year, and now an advanced version of the relaxed edition – for me, this approach is successful. The warnings on screen gave me an opportunity to prepare myself, letting me turn everything down or slip my headphones a bit further down my head, rather than waiting for me to have to react to the pain and overload as it happened.
The work to create a version of this film that is more accessible to people like me just reiterates that the filmmakers truly do respect autistic people. This kind of respect is evident throughout the film. It feels like they have listened – not just to parents, or guardians, or even just to speaking autistic advocates, but to the very nonspeakers they are aiming to depict.
Nonspeakers have historically suffered (and presently suffer) the brunt of the ableism, abuse and eugenics faced by autistic people. Indeed, Hans Asperger, after whom we get the ‘Aspergers’ diagnosis (now considered defunct by many, as it merely describes a very specific presentation of autism) would separate out the more ‘productive’ autistic children and sending the less productive (i.e. nonspeaking and those with higher support needs) children into the hands of the Nazis’ extermination programme (more information an be found here). And this separation has carried through into autistic spaces and autistic advocacy – nonspeaking autistics are rarely given the same platform or allowed as much space as speaking autistics, and many speaking autistics actively try to separate ourselves from of those us who do not speak.
A primary takeaway from this incredible little film is that nonspeaking autistics have always had something to say; it’s just that they have been actively denied the tools needed in order to communicate. Naoki himself says ‘to live my life as a human being, nothing is more important than being able to express myself’, and Ben hammers this home later on when he says that, by withholding the tools to communicate, ‘they have denied our civil rights’.
In centring nonspeaking experiences and nonspeaking voices – and in building the entire film around what nonspeaking autistic people have to say – I hope that, as well as being game changing for the way that neurotypicals view autism, this film will be a turning point in how the autistic community itself conducts its advocacy. The true power of the film could lie in finally encouraging speaking autistics like myself to centre the voices of and experiences of nonspeaking autistics.
We can change the conversation about autism by being part of the conversation.
Ben McGann
Because this film made it clearer than ever that these people are my neurosiblings – absolutely, totally, and completely. The difference between speaking and nonspeaking (or partially speaking) autistic people can seem stark, and the magnitude of difference in the challenges we face often serves to multiply the separation, but when it comes down to our experiences of the world, of time, of senses, we are so closely related that I felt an immediate kinship with all of them. Watching their experiences articulated and depicted on screen gave me an immense sense of home…and, despite the vast differences in some of our experiences, I felt truly seen.
There are so many precious and important things to walk out of the cinema (or, in pandemic times, to close the laptop and walk away from the dinner table) with: from the history of autism and how autistic people have been treated as less than human throughout the centuries, to the international storytelling giving us an insight into autistic lives beyond just the Western world (including the harrowing stories of autistic children abandoned in the bushes in Sierra Leone, and autistic people and their families’ powerful and successful fight to change things – although I would have perhaps liked a little exploration of how white Western colonialism tied into creating this state of affairs), all the way through to the importance of avenues of communication beyond speech.
But, most of all, what I walked away from the film with was an immense sense of joy. The young people we follow are so immensely loved and celebrated, and have been allowed to thrive to their full autistic potential. And it has not been easy. The film never pretends that it is. But it does show us that, fundamentally, it’s worth it for those moments of pure, unadulterated autistic joy.
Upon seeing his son in a state of sensory euphoria in a colour/light tunnel, Joss’ dad sums it up best: “right now, Joss is having a joy that I will never come close to.” And that acknowledgement, and depiction, of the unique sorts of joy that come with the struggles of being autistic is what makes this film truly revolutionary.
The Reason I Jump isn’t about changing autistic people to better fit into the world. It’s about demanding that the world change to fully appreciate and celebrate the wide variety of neurodivergent minds that exist within it. And that’s why everyone should see it.
As Naoki so perfectly says, his words read out over footage of a young autistic boy (played by Jim Fujiwara, beautifully bringing to life a young Naoki) flapping his hands with glee:
I used to think it would be the best thing if I could live my life like other people. But now, even if someone could change my autism, I would choose to stay as I am.
The Reason I Jump is out on limited release in UK cinemas from 18th June. You can find out more about local screenings, and where to buy tickets, here: https://thereasonijumpfilm.com. Keep an eye on the website for information about relaxed screenings.
The filmmakers have also worked with autistic people to put together a Self Advocacy Workbook for autistic people and a Presume Competence Community Handbook for professionals working with autistic people (as well as community groups who may be interested in screening the film).
Note: One criticism I do have is in the depiction of autistic people in distress. There is one scene, in particular, which captures Joss having a meltdown and is incredibly triggering for me. Whilst I understand how this serves the narrative, and potentially works from a storytelling perspective, I will never not be uncomfortable with people filming and broadcasting people’s actual meltdowns. Others will disagree or see this differently. However, it is worth noting that the relaxed version of the film does do a good job of warning for scenes of meltdown and scenes of distress.
