Why Dylan Jumps: representations of autism in contemporary literature (part one)

In the immediate aftermath of Dylan’s autism diagnosis in 1996, and for some time afterwards, I read everything I could get my hands on about autism. I imagine this is a fairly typical response to a diagnosis.  At the time the authors who were recommended and who I remember reading were Donna Williams, Temple Grandin, Rita Jordan and Simon Baron-Cohen. Behaviourist therapies such as ABA were beginning to be championed in the UK so there was that literature to be consumed as well as material on a plethora of alternative therapies.  I also watched the movie Rain Man again. At the time, Raymond  (played by Dustin Hoffman) seemed to be the only  representation of autism in the contemporary arts, although I subsequently realised that a variety of classic literary characters were probably on the autistic spectrum.

As an educator and academic I was comfortable reading research papers and academic texts about autism but I missed reading literary fiction during this time. As a poet and writer this has always been as important to me as the reading I do for my professional occupation. I remember being at a local autism support meeting soon after Dylan was diagnosed and telling another parent about a book on autism  I was reading. Her child was much older than Dylan – probably around 19, the age Dylan is now. I remember she said to me:  Oh I don’t read books about autism anymore. I read real books again.  I wasn’t sure what to make of that at the time but I understand now; as the years passed,  I returned to reading poetry and fiction instead of books about autism.

In the last few months, however,  I’ve read three books which are concerned with autism to varying degrees;  while not all of them are ‘about’ autism, they each offer the reader representations of autistic children or adults. The books are from different literary traditions (an autobiography, a memoir and a novel) and as a consequence build different relationships with the reader. Despite these differences I want to consider the books together in order to reflect on some developments in the ways in which contemporary writers are incorporating representations of autism in their work.  The books are:

  • The Reason I Jump by Naoki Higashida (translated by David Mitchell) (Sceptre, 2013)
  • Bacchus Wynd by Catherine Edmunds (Circaidy Gregory Press, 2013)
  • Love & Terror On The Howling Plains of Nowhere by Poe Ballantine (Hawthorne Books, 2013)

Although my main aim in reviewing these books is to focus on the issue of representations of autism, I  try to give enough  review information on the individual books for you to follow them up if you wish. Because this makes the review too long for a blog (even by my standards) I’m going to develop it in three instalments over subsequent weeks.

Why  Dylan Jumps: Autobiographical Representations of Autism

Of these three books The Reason I Jump by Naoki Higashida is the one you’re most likely to have heard of or read. It has had a lot of coverage in the press, at least here in Britain, and was serialised on BBC Radio 4’s Book of the Week in June 2013. I hadn’t heard about the book last summer when, driving to work one morning, I turned the radio on to hear translator David Mitchell introducing the book:

Autism is no cakewalk for the child’s parents or carers either, and raising an autistic son or daughter is no job for the fainthearted…

jump2I don’t remember whether that morning had been particularly difficult for me. Perhaps I hadn’t been able to wake Dylan. Maybe he hadn’t been cooperative as I bathed and dressed him. Or perhaps making sure he had eaten breakfast and was ready for his school transport had not left the time I needed for myself. Certainly I must have been running late if I was listening to Book of the Week on the way to work. At any rate I speculate that I must have been feeling a bit fragile that day because as a result of the radio programme I arrived at work in tears.

What happened that morning was the equivalent of a hug. At those times when I’m struggling to juggle being a carer with the demands of the rest of my life, it’s the flash of empathy from a stranger that can most undo me.  Like comforting arms giving me permission to have a cry, the BBC production of The Reason I Jump was a fine example of the ability of radio to create a sense of intimacy with the listener. In my ear that morning (and for as many episodes as I could tune in to for the rest of the week) I had the soothing voice of David Mitchell understanding my struggles and frustrations as a parent; a calm voice asking exactly the questions  I would put to Dylan if he could respond; and the Desiderata voice of Higashida (presumably the voice of an actor) speaking the extraordinary answers to my questions. The formula was potent; an instant shot of empathy, authority and reassurance.

When my copy of the book arrived from Amazon I tried not to be put off by the jacket and illustrations. I enjoyed Mitchell’s introduction in which he explained his attempt to understand the world of his own autistic son. This included a review of the ‘Special Needs publishing jungle’ from which Mitchell produced a set of categories I recognised from my own journey through the literature:  doctrinaire self-help manuals (‘like being asked to join a political party or a church’); academic texts (‘the gap between the theory and what’s unravelling on your kitchen floor is too wide to bridge’); confessional memoirs (media-friendly but limited practical use);  and the  ‘autism autobiography’ (illuminating but written by ‘sorted’ adults and not much help with the ‘three-year-old banging his head against the floor’). While this reading provided Mitchell with ‘theories, angles, anecdotes and guesses’ he remained, he reports in the introduction to The Reason I jump , ‘helpless’.

higashidaMitchell presents Higashida’s book (which he translated with his Japanese wife KA Yoshida) as unique in its ability to ‘offer up proof that locked inside the helpless-seeming autistic body is a mind as curious, subtle and complex as yours, as mine, as anyone’s’. Mitchell and Yoshida, whose home is in Ireland, translated the book into English after receiving a copy of the original publication from Japan and finding it ‘a revelatory godsend’. Higashida’s gift, Mitchell explains, was ‘the kick I needed to stop feeling sorry for myself, and start thinking how much tougher life was for my son, and what I could do to make it less tough.’

We don’t hear from Mitchell what that involved, in practice. Whether or not it meant introducing an ‘alphabet grid’ of the sort which Higashida uses (the author of the book is severely autistic and not verbal)  we don’t discover. That doesn’t matter, however, as this is not a memoir or self-help manual. Mitchell’s category of ‘autism autobiography’ is the best description of the text which follows his twelve page introduction to  The Reason I Jump. The difference however – and the feature which makes this book unique – is that this is the testimony of a child who was 13 when he wrote the book, rather than of an autistic adult. Indeed, the strap line on the book is: ‘One boy’s voice from the silence of autism’.

higashida2I was surprised to find myself less engaged by The Reason I Jump as a book than as radio. On the page I found the question-answer structure limiting. The questions were interesting and, as I noted previously, often ones I had pondered in relation to Dylan:  Do you prefer to be on your own?  What are your flashback memories like? Why do you flap your fingers and hands in front of your face? Some questions alerted me to things which are also true of Dylan but that I hadn’t noticed before: Why do you wave goodbye with your palm facing yourself? Others were things I was desperate for the answers to like What’s the reason you jump?

I read Higashadi’s response to this question with particular interest because Dylan jumps and because Higashida’s explanation of why he jumps had been partly responsible for my tears that June morning:

 when I’m jumping, it’s as if my feelings are going upwards to the sky. Really, my urge to be swallowed up by the sky is enough to make my heart quiver. When I’m jumping, I can feel my body parts really well, too – my bounding legs and my clapping hands – and that makes me feel so, so good.

So Higashida jumps to touch the sky and because the motion makes him ‘want to change into a bird and fly off to some faraway place’.  When I heard this on the radio I was moved and reassured. However, when I re-read the passage in the book I found myself with second thoughts. Of course I cannot say for sure that this isn’t why Dylan jumps, but I don’t think my son and Higashida are on the same page here.

Dylan does what I call ‘froggy jumps’ which involve him bending at the knees and doing a standing jump with his 12 stone (168 pounds) weight. My son is physically agile; he has no problem reaching some height with this jump. Dylan also does ‘Tigger jumps’ which involve him bouncing along as if on a pogo stick, legs straight. The Tigger jumps tend to happen outside and the froggy jumps inside, often in his bedroom. But here’s the thing; these jumps I am absolutely certain only ever happen at moments of intense frustration and distress.  Typically, Dylan will jump if things don’t happen as he was expecting or he isn’t allowed to have something he wants or take a direction which he had in mind. They nearly always arise from a breakdown in communication between us or from Dylan’s frustration at his inability to communicate to me what he wants.  Happily, these jumps are infrequent, but when they do happen they can be quite scary. Dylan doesn’t understand that indoor ceilings will not take this amount of pounding; I have, in the past, fled the room beneath his bedroom, terrified that the light fitting or ceiling will come down on me. Twice I have had to get ceilings re-boarded where his jumping has started to bring down dust and debris.

I understand, of course, that this jumping of Dylan’s can only be addressed by finding more effective methods of communication with him. And I also understand that my account of Dylan’s jumping does not negate Higashida’s explanation for jumping, which is equally authentic. My observation is only that the reason Dylan jumps and the reason Higashida jumps are different. Perhaps I had hoped to find something in Higashida’s reason for jumping which would help me to re-think Dylan’s behaviour, or my response to it – and perhaps it is there but I am simply missing it. However, my reading of Higashida’s response to this question (and several others) mostly serve to reinforce my belief that When you’ve met one autistic child, you’ve met one autistic child. This isn’t a criticism of the book in itself; single autobiographical accounts are valuable as authentic data, and it is extremely useful to have such an account by a child. However, I think we need to be careful of the ‘Rain Man Effect’; it would probably be unhelpful to Dylan if I were to assume his reasons were the same as Higashida’s.

Earlier I referred to Higashi’s as a ‘Desiderata voice’ and the radio serialisation of the book certainly had a calming and incantatory effect on me; I was satisfied and moved by the question-answer format which offered me short, and usually uplifting, meditations.  While I think this worked brilliantly as radio, I found myself less satisfied with the format on the page and I ended up frustrated by the ‘feel good’ nature of the book. While I acknowledge the importance of Higashida’s voice I would have liked an extended commentary from Mitchell to reflect on some of the issues raised by Higashadi and their implications for parents and carers. This could also have addressed the issue of contextualising the individual account and reminding the reader that Higashida cannot speak for all autistic children.

The power of Higashida’s book, I suspect, is in its ability to change attitudes to autism;  in his introduction Mitchell notes that reading it allowed him and his wife to ’round a corner in our relationship with our son’  and to raise their expectations of him.  In this sense the  book is transformative and Mitchell and Yoshida should be applauded for bringing it to a wider audience.

A short clip of the BBC Radio 4 production of The Reason I Jump is available here:

http://www.bbc.co.uk/programmes/p01bkzmb

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15 thoughts on “Why Dylan Jumps: representations of autism in contemporary literature (part one)

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  2. I have actually only heard the radio version of The Reason I Jump. Like you, I was driving when it came on the radio and I ended up in tears. I think the radio version works very well, because of the music and also David Mitchell’s gentle narration.
    While this was on and the book was being promoted, David Mitchell was everywhere. He seemed to be on every radio station and in all of the broadsheet newspapers. Everyone was talking about him. In the midst of this, I felt that Naoki began to disappear. Despite the fact that I liked listening to Mitchell, I was frustrated that the last voice we heard of the radio adaptation was his….the actor playing Naoki was faded out as Mitchell returned with more of his parental perspective. (Don’t get me wrong, I think he makes some insightful comments…but I’ve heard better/more perceptive from others). I also felt other people disappeared too – his wife (who made the initial translation, I believe), and Naoki’s mother, who had made the original transcription. Some of the people I met were confused as to who the author of the book was.
    Another point is that I’m not sure I would call this autobiography. Not only because of the various processes it has been through before becoming the final version, but because of the question/answer format. But I don’t mean that it’s any less because of it.
    You said you would have liked more information about what was specifically involved e.g. re the alphabet grid. I wondered about that too. Mitchell did a Q and A with Talk About Autism where he addressed this question – it’s on their website, if you are interested.
    Despite all of this, I think The Reason I Jump is very important. I don’t think it matters if we feel it represents autistic children/adults we know in the specifics e.g. why they might jump. I honestly think it contains a broader ‘truth’, which is that intelligent, thoughtful and feeling individuals are often not recognised as such if they are autistic.

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    • Hi Becky – thanks for these really interesting reflections – funny that you heard it while driving too. I agree with you about those features of the radio production that made it so beguiling. Like you I felt Higashida was almost erased by the reviews and promotions, and I made a conscious attempt to refer to the text as his rather than Mitchell’s in my blog. I realise that there is a debate about Facilitated Communication and the authenticity of the text but didn’t want to be distracted by this; I prefer to accept the text as Higashida’s (rather than Mitchell’s or anyone else involved in the transcription/translation process). I agree that if you’re going to credit those involved in the process they should be given equal footing – the wife and mother certainly were not! I don’t think it’s autobiography either but that was the best description using Mitchell’s own categories. I like it in the sense that it gives authorship to Higashida, but it is ‘facilitated autobiography’, perhaps, or ‘guided autobiography’. The key point is that the questioner set the agenda for the text rather than the autobiographer – but something is better than nothing and I’m not against the idea of facilitating in this way (I suppose it’s not dissimilar to a written interview). Yes, it’s important – and for the reasons you say. But it brings with it responsibilities, I think, in relation to how we produce and market and consume such texts. How I wish I could have heard it 18 years ago!

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  4. I right now reading EB’s perceptive comments. But I mention that as with all books ‘written’ by allegedly ASD people,I am all but convinced there is a third hand or voice. From 50 years of experience of autism perhaps longer than all of your correspondents, I am not convinced that any severely affected ASD child/man/woman is able to express what it feels like to be autistic and in the real world of sound and sight and smell and emotion. One can guess ; one can speculate; one can draw scenarios for the inner world-there is an inner world-; some of our guesses may be right ;some may be projections of time i the parent or other third hand’s conclusions. I could list the books by alleged third hands but my files are not with me as I write. EB ought to look to at the chapter on autism in Andrew Solomon’s ‘Far From The Tree’ (Chatto and Windus) 2013. This dares for the first time in the autism chapter in any autism literature to approach,inter alia, the hitherto taboo subject of parents who kill their children. It is a massive book; and notably has not been noticed or reviewed in the consumer magazine of the NAS now rebranded under the truly awful name ‘Your Autism’.

    Tomorrow at a poetry course I have to produced a poem about incapacity. How can I write of my son’s inner world.. I shall find out during today..but as Elizabeth is a fine poet (The Bat Detector) I offer her readers this as my attempt to know the world of a middle aged man with severe autism..

    Us

    When they had finished walking,
    Holme Wood about them, and closing,
    There was no other way to go,
    No place with redemption to offer.
    The man looked at his son, standing,
    Tall, round-shouldered, distant,
    White water at the beck’s edge,
    White water thrusting into grey
    And black, turning over, over
    In somersaults of October fury.
    Saw Loweswater capture it, head-on,
    And calmed by the wide lake,
    Drown deep in mirrors of larch.

    He had this flat stone in his hand,
    Plucked from the flood,
    Yet lacked a name for something
    Hard and cold between fingers,
    Nails bitten to moons of nothing.
    One dream exhaled its sigh,
    Exhausted. Always it died – years,
    Long days of watching, hours,
    So eager for word marvels.
    Tell him ,tell him, how was it within
    That body, that round shoulder,
    That crooked joint of thumb .

    NO`

    He turned his feet on the beach,
    Salmon pools emptying, drying out,
    As rain washed quickly past
    To another valley, beyond the fell.
    Began to push boots deep
    Into a scrum of shingle as if,
    As if wishing to disappear, become
    Stone he could not eat ,nor skim,
    Define geology ,texture, colour,
    Shape nor label water smells.
    Words wounded ,words lost,
    His thesaurus blank pages.

    Michael Baron. October 2005.
    Revised February 25 2014

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    • Hello Michael – it is lovely to hear from you (and I’ve so enjoyed meeting and chatting to your daughter through this blog). I love your poem. You are kind about my writing but your experience of poetry, as with your experience of autism, is far beyond mine. I particularly like the ‘nails bitten to moons of nothing’. That is lovely. Also the salmon and the ‘push’ of the boots, and the stone running through it. And those ideas of language/words/labels and their absence. Wounded words is lovely too. Thank you for sharing it. I notice you’ve been working at it for a long time. Thanks, too, for the reference to the Solomon. It’s not a book I know but I will follow-up your recommendation. I particularly want to write something about the issue of parents who kill their children. There have been a lot of cases recently. We need to lift the taboo on this I think. As for the ‘third hand/voice’ issue – one thing I notice is that methods of facilitated communication seem to really help some parents and families to a positive attitude. I’m sure there is a sense in which change in the parents supports change in the child and maybe this is the point. Perhaps we each have to find the thing which is enabling for us. Dylan’s disability is quite different from Higashida’s. I could not imagine ever going that direction with Dylan. His learning and communication disability is really very significant and I don’t believe there is a text like Higashida’s waiting to be ‘unlocked’. But we each have our own way of facilitating communication – I often think that it is my poetic practices which I find enabling with Dylan. Some of the things we use as poets – imagery, rhythm, rhyme, counting and stress and all the other things we do – well this is the 3rd voice in my interactions with Dylan. Perhaps we find whatever helps us. I don’t know. I’m not even sure that ‘autism’ is the most useful way for me to think about Dylan anymore. Somedays it seems simpler and more complex than that. It is a lifetime’s work for sure. It’s lovely to hear from you Michael – I hope the bats are thriving in your neck of the woods! Elizabeth (my poet’s name for once!).

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