Enough ‘autism awareness’. The necessity now is action

Progress has been made, but the release of the profound film, The Reason I Jump, shows how much further we need to go

A film comes out this month that is among the most profound, thought-provoking and moving feats of documentary-making I have ever seen. It is about autism, and a state of being that far too many people either misunderstand or ignore. But as it ranges across lives played out in Japan, Britain, the US, India and Sierra Leone, it also shines a light on parts of the autistic experience millions of us would recognise in ourselves. In doing so, the film shows how little we still know about the human mind, but how much more we understand than we did even a decade ago.

The Reason I Jump draws on the revelatory book of the same name, written by the Japanese author Naoki Higashida when he was only 13 and first published in 2007. Diagnosed with “autistic tendencies” when he was six, Higashida had always displayed the deep difficulties with spoken communication common to many autistic people. But when he learned to use a computer connected to an alphabet grid, he began to map out his world in rich, aphoristic prose that rarely wasted a word.

My eldest child, James, who is now 14, is autistic. And when I first read the translation of Higashida’s book by the 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 interior life, as well as highlighting aspects of his mind – and experiences – that we had barely started to think about. So many plain truths were laid out, from the way that many autistic people feel and express emotion as a profoundly physical set of events (hence the title), through an instinctive affinity with nature, to the clarity of recollections even from early infancy. 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 might feel just as vivid as an event that has 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 autistic people – and their parents and carers – spread across the world, highlighting aspects of their lives that contradict common perceptions of autism (not least a huge capacity for empathy and a need for company), and also what they are up against. Even if the language of “psychosis” and “retardation” has dwindled, western societies are still smattered with the attitudes it expressed. Elsewhere, for example in Sierra Leone, there are awful stories of autistic children judged to be demonic and unwanted, and simply abandoned in the bush. Here, clearly, is another frontier of the modern struggle for human rights. Indeed, towards the end of the film comes another of Higashida’s elegant sentences, which is as close to a rallying cry as his writing style will allow: “The hardest ordeal for me is the idea that I am causing grief for other people. Please: keep battling alongside me.”

Which brings us to the politics of all of this. Self-evidently, autistic people remain marginalised, misunderstood and far too often denied what they should have as a matter of basic entitlement. Everything from miserable rates of employment among autistic adults to their wretched experiences in the benefits system attests to how much institutionalised stupidity needs to be overturned. After the often awful experiences visited on autistic children and young people by lockdown, there are to be even more cuts to councils’ funding for those with special educational needs – something framed in the doublespeak of “overspends” that actually represent underbudgeting. The need for attitudinal shifts in the way institutions and individuals view autism was recently summarised by Mitchell as he promoted the film: he now insists that we should think of it “less as a cognitive disability and more as a communicative disability”, and let autistic people “out of infantilisation prison and allow them full human credentials, which they’re too often denied”.

Such words might suggest anger and desperation, but there is a rising understanding of autism’s amazing complexity and a grasp of the condition that would have been unthinkable only a relatively short time ago. The basis of this is science and academic inquiry, and such advances as the British psychiatrist Lorna Wing’s revelation that autism is a “spectrum condition” manifested in a huge variety of ways, which was developed in the 1970s and 80s and is still rippling through society.

But two other factors also stick out. One is the prominence of autism in the world of literature and the arts: before The Reason I Jump, a trail was blazed by Mark Haddon’s 2003 novel The Curious Incident of the Dog in the Night-Time, and the American author Steve Silberman’s Neurotribes, a history of autism and a plea for its acceptance which, against plenty of expectations, became a bestseller. The other, which marks a huge shift, is the new(ish) world of autistic self-advocacy and the way that the internet has given voice to those who the pre-digital age often condemned to silence, now united by the brilliantly potent concept of neurodiversity.

One truth in particular blares from The Reason I Jump: the help autistic people get should be about matching what society and the state are able to do with what voices such as Higashida’s tell us. For want of one-to-one support and the right tech, a non-verbal child might remain locked into their own world; if employers don’t embrace both the benefits autistic people can bring and how 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 in line with autistic people’s needs. The world is now brimming with annual rituals all about “autism awareness”. The necessity is action.

There are increasingly frequent signs of small but significant moves in the right direction. Last week, the National Theatre made an announcement about the lead role in its touring production of The Curious Incident of the Dog in the Night-Time. It said it wanted to give every “male-identifying actor with a playing age of 14 to 18 who identifies as neurodivergent the opportunity to be seen for an audition”, and would “work closely with the actors who are eventually cast in the role to individualise support on tour – an example of this might be enabling them to tour with a support worker”. This is what progress looks like. So far it has been measured in small steps: what autistic people await is a quantum leap.

from https://www.theguardian.com/commentisfre...