Enough of “autism awareness”. The need now is to act | John harris
A The film comes out this month and is one of the deepest, most thought-provoking, and moving documentary-making feats I have ever seen. It is autism and a state of being that far too many people misunderstand or ignore. But as it spans across lives played out in Japan, Britain, the United States, India and Sierra Leone, it also sheds light on parts of the autistic experience that millions of us have. would recognize in ourselves. In doing so, the film shows how little we still know about the human mind, but how much more we understand than ten years ago.
The Reason I Jump is based on the revealing book of the same name, written by Japanese author Naoki Higashida when he was only 13 years old and first published in 2007. Diagnosed with “autistic tendencies” at the At the age of six, Higashida had always displayed the deep difficulties with oral communication common to many people with autism. But when he learned to use a computer connected to an alphabetical grid, he began to map his world in rich, aphoristic prose that rarely lost a word.
My oldest, James, who is now 14, has autism. And when I first read the translation of Higashida’s book by novelist David Mitchell and his wife, Keiko Yoshida, who also have an autistic son, it confirmed things that my partner and I had long known about. James and his rich inner life, as well as highlighting aspects of his mind – and experiences – that we had barely begun to think about. So many simple truths have been exposed, from how many people with autism experience and express their emotions as a set of deeply physical events (hence the title), to an instinctive affinity with nature, to the clarity of memories, even from early childhood. Higashida said that while “a normal person’s memory is arranged continuously, like a line,” his was “more like a pool of dots,” in which something he experienced years ago can seem as alive as an event that just happened.
The film uses the magic of the camera to evoke and explore these experiences and states. It also focuses on a handful of young people with autism – and their parents and caregivers – spread across the world, highlighting aspects of their lives that contradict common perceptions of autism (including a tremendous capacity for empathy and a companionship), and also what they are up against. Even though the language of “psychosis” and “delay” has diminished, Western societies are still populated by the attitudes it expressed. Elsewhere, for example in Sierra Leone, there are horrific stories of autistic children deemed demonic and unwanted, and simply abandoned in the bush. This is clearly another frontier in the modern struggle for human rights. Indeed, towards the end of the film comes another elegant line from Higashida, which is as close to a rallying cry as his writing style allows: “The hardest test for me is the idea that I cause grief to others. Please keep fighting by my side.
Which brings us to the politics of it all. Clearly, people with autism remain marginalized, misunderstood and all too often deprived of what they should have as a basic right. All miserable employment rate in adults with autism their miserable experiences in the benefit system attests to the extent to which institutionalized stupidity must be reversed. After the often horrible experiences visited on children and youth with autism by lockdown, there will be even more cuts in funding for counseling for people with special educational needs – something framed in the double talk of “overspending” which is actually a sub -budgeting. The need for a change in attitude in the way institutions and individuals view autism was recently summed up by Mitchell while promoting the film: he now insists that we should consider it ” less like a cognitive handicap and more like a communication disorder ”, and let autism people“ get out of the prison of infantilization and grant them all the human qualifications, which they are too often denied ”.
Words like these may suggest anger and despair, but there is a growing understanding of the astonishing complexity of autism, and an understanding of the condition that would have been unthinkable only a relatively short time ago. The basis for this is science and academic research, and advances such as British psychiatrist Lorna Wing’s revelation that autism is a “spectrum condition” manifested in multiple ways, which was developed in the 1970s. and 1980 and which continues to spread in society. .
But two other factors also stand out. One is the importance of autism in the world of literature and the arts: before The Reason I Jump, a trail was laid by Mark Haddon’s 2003 novel The Curious Incident of the Dog in the Night- Time, and American author Steve Silberman’s Neurotribes, a story of autism and a plea for its acceptance that, against many expectations, has become a bestseller. The other, which marks a huge change, is the new (rather) world of autistic self-representation and how the internet has given voice to those often silenced in the pre-digital age, now united by the brilliantly powerful concept of neurodiversity.
One truth in particular emerges from The Reason I Jump: The help people with autism receive should be about matching what society and the state are capable of doing with what voices like Higashida’s are telling us. Without one-on-one support and the right technology, a non-verbal child can remain locked in their own world; If employers do not embrace both the benefits autistic people can bring and the ways to make their lives easier, oceans of potential will continue to be wasted. The same will happen if we do not redesign parts of the private and public realm according to the needs of people with autism. The world is overflowing now with annual rituals all about “autism awareness”. Necessity is action.
There are increasingly frequent signs of small but significant movements in the right direction. Last week, the National Theater made an announcement regarding the lead role in its touring production of The Curious Incident of the Dog in the Night-Time. He said he wanted to give every “actor who identifies as a 14-18 year old male who identifies as neurodivergent the opportunity to be seen for an audition”, and “would work closely with the actors. who will ultimately be chosen into the role to individualize the accompaniment on tour – for example, allowing them to tour with an accompanist. ”This is what progress looks like. So far, it has been measured in small steps: what autistic people expect is a quantum leap.