Higashida. Naoki The Reason I Jump – One boy’s voice from the silence of autism. Sceptre Books, London, 2013.
With the publication of this remarkable book, the gap between what paediatricians, psychologists and psychiatrists have theorised about the underlying impairments that produce autism and what people with autism themselves tell us about their inner experience and struggles - grows ever wider. The Reason I Jump is a major addition to the increasing number of autobiographical accounts by individuals with the label of autism. As Paula Kluth remarked in 2004:
“The function of the autobiography in contributing new voices to the fields of special education and disability studies, in shaping how educators understand disability and people with labels, and in inspiring new cultural awareness cannot be underestimated” Naoki Higashida is a Japanese teenager with autism who communicates by pointing to letters on a cardboard keyboard. He cannot use his voice reliably.
The Reason I Jump provides its insights through Naoki’s answers to a series of 58 questions that address many of the least easy to understand ‘autistic’ behaviours.
Thus Naoki provides his personal answers to questions such as: “Why do you echo questions back at the asker? – Why do you dislike holding hands with people? – Why are your facial expressions so limited? Why do you make a huge fuss over tiny mistakes? What’s the reason you jump? And many others…It is not always easy for him to be clear about the reasons why and often what he describes is the effect on him of doing the things he does. It is often about restoring a sense of order or wholeness to his being in the world. We should not be surprised that Naoki cannot always fully explain himself. Many of the difficulties he is grappling with are occurring below conscious awareness and are only known by their effect on our mood or behaviour or our sense of well-being. But the fact is none of us is able to say much about how we move our bodies; if you were asked to try and explain how you produce words to talk or how you reach out and pick up a coffee cup – you wouldn’t need long - there is virtually nothing we can put into words about these actions – we just do them and take their smooth execution for granted in the process. What Naoki is often trying to tell us is that he cannot assume these kinds of actions will be unproblematic; that all kinds of accommodations and internal routines might need to run before he can do the seemingly simplest things.
Interestingly, the professional writers whose work on autism chimes best with what Naoki tells us are: Martha Leary and Anne Donnellan (2012). Since the mid-nineties Leary and Donnellan have stressed that autism is most accurately construed as a movement disorder, individually nuanced, that leads to difficulties for individuals in any or all of the following aspects of movement: starting, stopping, executing, continuing, combining and switching. Leary and Donnellan define ‘movement’ in its widest sense and include ‘internal’ movements such as retrieving memories or registering emotion as areas of human performance that can be affected by a movement disorder. They have also been relentless in their assertion that movement difficulties effectively mask competence in individuals with autism and that this should make us highly sceptical of any assumptions we might make about ‘ability’ based on psychometric testing – all we may really have assessed is the movement difference not ‘intelligence’. Here is one of Naoki’s attempts to help us understand what it is like (from the inside) to experience movement disturbances (p.68):
‘There are times when I can’t act, even though I really, badly want to. This is when my body is beyond my control. I don’t mean I’m ill or anything. It’s as if my whole body, except for my soul, feels as if it belongs to someone else and I have zero control over it. I don’t think you could ever imagine what an agonizing situation this is.
You can’t always tell by looking at people with autism, but we never really feel that our bodies are our own. They’re always acting up and going outside our control. Stuck inside them, we’re struggling so hard to make them do what we tell them’ Almost all of what Naoki writes about is movements of the mind - hisurges to do something in a certain way, the perceptual shifts, disappearances of memory, the welling up of illusory threats that compel him to escape. It is his accounts of the inner life behind the confusing (to us and often to Naoki too) outward behaviours that are most revealing. Each of Naoki’s answers go some way towards detonating the many myths that are implicit within the ‘triad of impairments’ narrative of autism* - Not least the myth that people with autism lack empathy or a theory of mind – Naoki’s short story I’m Right Here which features at the end of the book shows he has the storywriter’s gift of being able to take the reader step-by-step to a place of understanding and make them feel what he wants them to feel as he goes. Likewise, it is clear that often Naoki is only too aware of other’s feelings and is sometimes overwhelmed by them; he also has an accurate awareness of how he is likely to be perceived by others when he is at his most challenged. The Reason I Jump is translated from the Japanese by the author David Mitchell and his wife KA Yoshida; they have a son with autism themselves and therefore a particular stake in what Naoki is saying. David Mitchell is unequivocal about what he has learned and how his learning has transformed his understanding of and relationship with his own son; crucially this has been about the realisation that the behaviours described in the ‘triad of impairments’ ‘are not symptoms of autism but consequences of autism” (p.10). And - if that last sentence made no sense to you whatever – you need toes read ‘The Reason I Jump”.
* The ‘Triad of Impairments’ refers to the fact that individuals must show apparent difficulties in 3 areas of their functioning – communication skills, social skills and imaginative thinking skills before they can be given a diagnosis of autism. In itself, the triad has no explanatory force in as much as it does not tell us why individuals are experiencing these difficulties. People receive the diagnosis of autism because they have a particular set of difficulties – why do they have these difficulties? - Because they have autism. Clearly we need to do better than this circular and empty explanation…
References/Further Reading Kluth, Paula (2004) Autism, Autobiography and Adaptations