Shredding Pinocchio

WP_20150331_17_33_36_ProSo the other evening I heard the most terrific commotion from Dylan’s room; nothing unusual about that, I thought to myself as I took the stairs two at a time, except that something seemed different about this noise. But by the time I got to Dylan’s room it had stopped; he was sitting on his bed, absorbed by something. As I approached I couldn’t believe what I was seeing: Dylan was shredding Pinocchio.

What are you doing Dylan? I asked, alarmed. What are you doing to Pinocchio?!

But Dylan had disappeared into the zone where he is unreachable. I moved towards him wondering whether or not I should stop him from tearing the book but he pushed me firmly away. He was intent on ripping. I watched Dylan work carefully through the pages tearing each one into strips and throwing them in his waste bin. He was systematic and purposeful. The book had to be shredded.

more dylan's 21 053Tearing pages creates sensory effects which can be soothing or stimulating if you are autistic. Although Dylan doesn’t usually shred, he appeared to have established a rhythmic pattern of tearing which he found calming. Still I was alarmed – not because of the shredding per se but because it was happening to Pinocchio.

Dylan has been in love with Pinocchio since he was a boy. Although he has collected various Pinocchionaelia over the years, his focus has settled on this particular book. I have described the book, in a previous post, as a sort of witness or friend. The book goes everywhere with Dylan; it waits behind him on the piano while he has his meals and it sits on the laundry basket in the bathroom, open at a favourite page, while Dylan takes a bath. It is carefully positioned on his bed while Dylan is in his bedroom and is carried in his backpack wherever he goes. Dylan even manages to hold it when he goes climbing.

independence 016Why then would Dylan shred it? His relationship with the book had seemed as usual less than an hour before when Dylan had it with him during his evening meal. Had something happened to the book to ‘spoil’ it perhaps? Could Dylan be upset because he had accidentally torn or spilled something on one of the pages or it had become creased or in some way damaged? If Dylan had learned to love the book so much maybe an alteration to it, however slight, would be disappointing and frustrating for him? This was the only possible explanation I could find for Pinocchio being so suddenly, and so thoroughly, rejected.

To try and understand how Dylan might be feeling I searched for a parallel in my own life. Was there something important to me which I could feel let down by? I could think of plenty of objects which have sentimental value or which I care about and wouldn’t want to damage. I keep these in relative safety, however, rather than carrying them with me. If I restricted myself to thinking about things which are portable the only object I could come up with was a mobile phone. Perhaps it would help me empathise with Dylan if I imagined the frustration of not being able to get a signal? Might I be tempted to bin or smash my phone? I’m actually not very interested in mobile phones so maybe not. Still, this was the closest I could get to imagining how it might feel if something I depended upon let me down.

WP_20150331_17_33_44_ProMy concern at the shredding of Pinocchio reminded me of how I would panic if we didn’t have a spare dummy in the house when Dylan was a baby. I’d been set against using dummies (or pacifiers) before my children were born but Dylan turned out to be a sucky baby who wouldn’t settle without one. So for years we lived in the shadow of Dylan’s dummies – just as now I was living on the end of Pinocchio’s strings.

Although Dylan has an interest in collecting duplicates  this edition of Pinocchio was a one-off; he has two copies of another version but there were no spare copies of this favoured edition. As Dylan shutteres 012turned and tore the pages, however, he appeared calm. I considered the possibility that I might be more anxious about this than Dylan. I remembered a woman I used to live with who would sometimes take a pot from the kitchen cupboard and hurl it across the backyard on her arrival home from work. She was a teacher at a London secondary school and smashing crockery helped her to release stress. Though the behaviour made me anxious it calmed her; afterwards she would put the kettle on for tea as if nothing had happened. Perhaps in a similar way shredding was helping Dylan to feel better.

This helped me understand why Dylan might feel compelled to tear his book but I was concerned that the benefits would be only temporary. For while my housemate smashed pots she didn’t like anyway, Dylan loved Pinocchio. What would he do without his book by his bed through the night? How would he eat his breakfast without Pinocchio? Or be comforted by the weight of his backpack if Pinocchio wasn’t in it? What was going to happen to us without Pinocchio?

*

WP_20150418_19_43_59_Pro-1The dummy-sucking years had made me anxious. One day a friend advised: loosen up a little Liz – he’ll stop using it when he’s ready – when did you last see an adult with a dummy? Perhaps it was my more relaxed attitude as a result of this advice which enabled Dylan, soon after, to give up his dummy. He did this with the same determination that he had kept it for so long; one day he simply spat it out and never bothered with a dummy again.

I would have done well to remember this instead of messing around online trying to source a replacement copy of his preferred version of Pinocchio. That night, Dylan took himself quietly to bed and the next day simply carried on with his life. It’s true he replaced the shredded Pinocchio with one of the alternatives but I saw this as positive change and development, like a hermit crab discarding a too-tight shell for one in which there is still space to grow. The thought of Dylan the hermit crab brings to mind one of my early poems, ‘The Littoral Zone’. The piece opens:


This is the littoral zone, you say, as we scavenge below strandline,

picking out shells and weeds for the children.
You lift a Dog whelk, turn it in long-fingered hands,
place it gently on your palm. Hermit Crab, you whisper,
as the barnacled shell rolls over, sprouts a pincer.
Gull-eyed, you pluck a tiny periwinkle from the sandy flats,
show me a speck of crab curled inside,
explaining it will leave this for a bigger shell in time.
This recluse, this little anchorite, is in the first shell of its life:
strung out ahead of it, across this beach, a future of univalves.

I like that, I tell you:
the thought of wearing a right-sized shell
with room enough to grow; getting the fit right –
feeling snug (but not too much).
And I realise, as I say this, that I’ve been crawling backwards,
reversing across the littoral zone –
cramping into ever smaller shells.

…/

The poem goes on to describe the discomfort of this process and the way in which it can involve a loss of self and  ‘voice’. It ends optimistically, however, with the speaker resolving to: ‘fill my lungs, cry with the gulls’. As I re-read my poem I enjoyed the link I had found, years later, with Dylan’s pattern of growth and development. It also occurred to me, however, that  I could be viewed as still ‘reversing across the littoral zone’.

Pinocchio 003Last month, for example, I resigned my management role at work. Given most people seek promotion rather than demotion this is not the expected direction of travel, professionally or materially. The decision, however, was driven by a desire to make space in my life for the things which matter, not least my children. I prefer to think of it as seeking a larger not a smaller shell:  The amazing thing, I said to a friend, is not that I quit but that I managed it, while being a carer, for so long.

Stepping back at work has had some immediate unexpected benefits. Within a couple of weeks I had drafted a couple of new poems (even with the ‘plenty else’ going on in my life for which I had resigned my role). They weren’t particularly successful drafts but I had, at least, made space for them. Then, the other day, I picked up a manuscript of poems which has been languishing on my desk: perhaps I would get around to sending this to a publisher now too?

After re-reading it I decided not to bother. There’s nothing terribly wrong with it. The poems are OK. Most have already been published in magazines. But really, I thought to myself – does the world need another book of love poems? Probably not. And I kept finding faults with the poems. I’m tired of conceits. Unimpressed by sestinas. Fed up with words like ‘heft’. So I did something I have never done in all my years of writing: I scrapped the lot (well, six poems got a reprieve). Time to move on.

I like the idea that starting over with my poems and giving up my management role are not very different to Dylan shredding Pinocchio; we sort of liked them, but they didn’t really satisfy us anymore. Something else will turn up, I tell myself, if we stay brave and open-hearted.

Reference:

Barrett, E. (1998) ‘The Littoral Zone’ in Walking on Tiptoe. Staple First Editions.

For information about my work as a poet please see the pages ‘Liz‘ and ‘The Poems‘.

Ways Of Learning: examples from a home education programme

books etc 016In my last post I reflected on a home learning programme which I undertook with Dylan in the years immediately following his autism diagnosis. In that post I referred to a framework for home learning described by Aboucher and Desforges:

reading, library visits, playing with numbers and letters, playing with shapes, teaching nursery rhymes and singing.

In this post I provide examples of Dylan’s home-based learning within each of these categories. Although Aboucher and Desforges’ framework is not based on a specialist learning environment I think it is equally applicable for an autistic child with a learning disability. As the examples illustrate, however, flexibility is required when interpreting the categories.

a) Reading/library visits

Although Dylan doesn’t ‘read’ he has always loved books. Below are some ways in which Dylan engages with literacy-based activities and my reflections on their possible value.

  • WP_20150107_09_12_58_ProReading the same book for weeks on end. I used to try and move Dylan on to other texts but later realised that this repetition suits Dylan’s learning style and builds his confidence.
  • Reading multiple copies of the same book. I have speculated on possible reasons for this here.
  • Reading the same page in a particular book. Dylan keeps favourite books open at ‘special pages’. At home he keeps these close at meal time and bath time. I imagine that these pages are comforters for Dylan or that the characters on the page are real to him and are his friends, sharing Dylan’s key activities.
  • Turning the pages of a book rapidly, usually from back to front, sometimes while looking away or with eyes closed. I imagine Dylan might be counting or playing memory games.
  • Carrying books around without opening or looking at them. There are eight books which go everywhere with Dylan. Dylan doesn’t look at these outside the house; sometimes, when we are in a cafe, I might say ‘why don’t you have a look at one of your books Dylan?’ But he never wants to. Dylan has the books with him not as we might, in order to read at opportune moments, but as comforters perhaps, or because they are friends, or he enjoys their weight.
  • books etc 007Using books as objects, for example to sit on, lick, or wear on the head. Dylan’s sensory and physical relationship with books as artefacts is a valuable part of his developing literacy. Dylan accepts my standards of care for library books, I think, because he has his own copy of favourite books (which I accept will become wet, dirty and torn).
  • Reading homemade books. These can be quite simple: scrapbooks, for example, laminated pages or inserts in plastic sleeves of an A4 folder. The books can have a narrative arc (for example ‘using the toilet’) but more often the books I made for Dylan were simply pages of things which I thought would interest him.

For Dylan ‘reading’ is usually a private activity. This was hard for me to accept, initially, as my expectations and instinct about early literacy were that it should be shared. In time I learned to give Dylan the space he needed however. I developed the following techniques for offering support:

owl babies~ sitting silently next to Dylan with my index finger held out (I discovered that Dylan would take my finger and point to something in the book if he wanted me to name an object or clarify something);

~ sitting next to Dylan offering a simple commentary as he turned the pages (talking about the book rather than reading the narrative);

~ sitting at a distance ‘modelling’ reading by turning the pages of a book and using simple language (‘Percy sad’);

~ memorising some of Dylan’s favourite books and speaking these to Dylan at various times of day. In time this triggered him to fetch the book.

There are now a few books which Dylan will allow me to read with him. It is always important, however, that I let Dylan take the lead, e.g. selecting the text and setting the pace for me to read as he turns the pages.

b) Numbers and letters

books etc 005Numbers and letters are abstract symbols. Some children with an autistic spectrum condition are comfortable with this and demonstrate a facility for mathematics or for learning foreign languages. This is not the case for Dylan, however, for whom numbers and letters as symbols have never appeared meaningful.

At 20 Dylan will identify marks on a page as ‘why-ya’ (writing). He will also tell me that I am ‘why-ya’ if he sees me with a pen or pencil and piece of paper. Interestingly, however, if I am typing at a keyboard he will not identify this as ‘why-ya’ but rather ‘poo’ (computer) which he sees as a different activity entirely. I’m not sure if Dylan connects letters with communication (i.e. whether or not he understands the link between reading and writing). I am even less sure that Dylan associates number symbols (1,2,3 etc) with the thing(s) they represent. Dylan doesn’t have a word for ‘numbers’ and hasn’t ever told me that a symbol is a ‘number’ in the way that he has identified marks on a page as ‘why-ya’. I suspect that, for Dylan, numbers and letters amount to the same thing: abstract marks on a page.

I did a lot of fairly conventional number and letter work as part of Dylan’s home learning programme when he was young. Mostly this involved me trying to teach Dylan to sequence numbers and letters and to copy them. Dylan did not enjoy this work and never showed any real understanding of it. If I had my time again I wouldn’t bother. I continue to try and develop Dylan’s awareness of numbers and letters through alternative approaches, however. Activities which Dylan seems to enjoy and which have had some impact include:

  • books etc 006Counting things in pictures (the windows in Ulm cathedral is a favourite activity) through chant and point. Whenever Dylan pays attention to something I look for objects we can count, e.g. ‘let’s count the stars’.
  • Playing dominoes (this may be more about matching the shape of the dots than about number but I try to enforce the number link by counting dots when we play).
  • Focusing on meaningful sequences of numbers and letters rather than abstract sequences such as the alphabet. The  sequences of letters which Dylan recognises currently are D-y-l-a-n and (possibly) m-u-m. It has taken many years of exposure to the letters in Dylan’s name for him to recognise them. Even now I don’t think that Dylan ‘reads’ his name; he likes pointing to the letters on his door and for me to chant them, but he is as likely to indicate them in reverse order (but get cross if I sound them out backwards).
  • Gradually replacing familiar pictures with letter sequences. I tried doing this as part of Dylan’s home learning programme by blanking out some of the pictures in his ‘red book’ and in lotto games. On reflection I tried this too early. I should have allowed more time for Dylan to feel confident communicating with photographs, pictures and symbols before moving him onto letters. Attempting letters too early created a sense of failure in Dylan and frustration in me (or perhaps vice-versa). My sense is that Dylan is only now moving into the symbolic stage of communication; I have had some success this year with makaton signs and symbols and have therefore recently introduced the sequence m-u-m.
  • books etc 002Introducing numbers and letters in a naturalistic and comfortable setting. I have introduced m-u-m on Dylan’s visual timetable board because it’s an object which is important to him, that he is comfortable with, and which he interacts with on a daily basis. For other children and adults this might be DVDs, i-pads, the fridge door etc.
  • While technology supports some children to develop an awareness of numbers and letters, Dylan doesn’t seem to recognise word processed text or screen-based letters and numbers. Dylan’s learning style is kinaesthetic; he needs to hold a physical letter or number in his hand and engage with it as an object. For learners like Dylan, play letters and numbers are important for years beyond what might be considered ‘age-appropriate’.

c) Shapes

wikipediaI did ‘shape work’ with Dylan as part of his home learning programme but am fairly confident that he still doesn’t recognise the words ‘square’, ‘circle’ or ‘triangle’. And who cares? Is it going to make his life any less rich? Does it matter if he doesn’t know the word to describe a shape? As with letters and numbers, Dylan needs a physical object in his hand to recognise the shape of it. I’m sure that he has an intimate understanding of a triangle; if I put one in his hand he would explore it with all his senses (especially if it was a piece of Toblerone). But he wouldn’t recognise the name for it. And he wouldn’t push it into a ‘shape sorter’ with any enthusiasm or success. In fact I used to think Dylan tried to push shapes into the wrong holes deliberately, for a laugh.

books etc 009Autistic children have good visual-spatial awareness and it is generally assumed that they therefore enjoy doing things based on these skills such as jigsaws. Dylan, however, doesn’t show any enthusiasm or particular ability for jigsaws. I have never been sure whether this is because he finds them difficult or because he finds them boring; although mostly Dylan doesn’t complete jigsaws, sometimes he surprises me by showing that he can. Actually I’m with Dylan on this one; I’ve always found jigsaws fairly pointless. Nonetheless I scheduled them in Dylan’s home learning programme because I thought I should. On reflection it was a waste of time; there were plenty of other things we could have been doing. Some of the activities I did (and still do) with Dylan which develop his visual-spatial skills and which he enjoys include:

  • Matching games. It is easy to make lotto games of objects which your child is particularly interested in or of new vocabulary which you want to teach. While this isn’t about ‘shape’ as such, it is about pattern recognition which involves the same cognitive processes.
  • Flash cards. A deck of cards is tactile and comforting; you can shuffle, sort, browse, deal, distribute, drop, pick-up, check, lose, duplicate and throw away. So many wonderful possibilities. Dylan liked cards. I probably didn’t exploit this interest as much as I could have.
  • Found shapes. As a writer I love to stumble on poems which exist without having been written: the found poems we encounter if we keep our hearts and minds open. And shapes are even easier to find than poems; food is a great place to look (I’ve already mentioned Toblerone) as is the great outdoors. I am currently working on pointing shapes out to Dylan in the hope he might make the links between them and recognise the abstract concept of ‘triangle’ as something which applies equally to a piece of chocolate and a road sign.

d) nursery rhymes and singing

education reflections 055Some of Dylan’s most effective exposure to language has been through musical resources; I suspect this is because nursery rhymes and songs use devices such as chorus and repetition which create the pattern and structure which Dylan responds to. Although Dylan has an ambiguous relationship with singing due to his auditory sensitivity (I have written about this here and here) music has been one of the most important things in his life and seems increasingly significant as he gets older.

Nursery rhymes and singing are used in early years education not just because of their intrinsic value but as a vehicle for learning. They can support the development of pre-lingual skills such as turn-taking and imitation as well as developing social awareness (for example emotional understanding) and cognitive knowledge (for example in relation to literacy and numeracy). While I realise this raises issues around age-appropriate activities (which I have reflected on here) I continue to engage Dylan through nursery rhymes and singing on a daily basis. Some approaches which I have found particularly useful include:

  • music 029Making compilations of nursery rhymes and songs for Dylan on key themes to support specific learning (e.g. ‘parts of the body’ or ‘counting’)
  • Putting nursery rhymes on Dylan’s i-pod so that he can listen to them privately and when out and about in the community (I have written more about this here)
  • Encouraging Dylan to listen to nursery rhymes as part of a bed time routine (I think Dylan has learned a lot from his years of routine listening)
  • ‘Embodying’ nursery rhymes through actions: some of Dylan’s favourite nursery rhymes, and the ones he seems to learn most from, are those with accompanying actions.
  • Exaggerating actions to nursery rhymes in order to emphasise communicative purpose.
  • Making changes to the words of familiar nursery rhymes so that Dylan accesses meaning as well as sound. My daughter, for example, changed ‘one potato, two potato’ into ‘one banana, two banana’ one day, changing the shape of her hand from a fist to a flat curve. Dylan found this hilarious and still enjoys changing potato to banana.
  • Exaggerating singing of nursery rhymes in order to emphasise features of language such as stress, intonation, tone and pitch.

Final reflection: the importance of language

independence 016What makes the education system fundamentally inaccessible for many children is the role of language in the delivery of the curriculum. A key challenge for parents and educators is therefore how to make learning accessible for children who do not speak or use an alternative communication system. Dylan is currently developing some echolalic speech but for the majority of his life, and throughout his schooling, has been classed as ‘non-verbal’. It is perhaps not surprising  that so many of the suggestions in this post focus on language development; it is in its potential for adaptations to language, I suspect, that a home learning programme may be of particular value.

Reference:
Desforges P. and Aboucher, A. (2003) The Impact of Parental Involvement, Parental Support and Family Education on Pupil Achievement and Adjustment: A Literature Review. Queen’s Printer: Exeter

Images:

The images of Owl Babies and the Toblerones  are from Wikipedia. The opening photograph of Dylan reading Postman Pat was taken during a holiday in France in the late 90s, at the time of Dylan’s home education programme. The closing photograph of Dylan at a climbing centre (holding a copy of Pinocchio) was taken just before Christmas 2014.

Autism And War In Fiction: The Boy From Aleppo Who Painted The War by Sumia Sukkar

AleppoeyewearIn a recent post I reflected on the implications of war for autistic children and their families. In particular, I wondered why media reports from warzones never seem to include footage of or reference to autistic children: Where have the autistic children and adults gone? I asked.

In this post I review a BBC Radio 4 production of The Boy From Aleppo Who Painted The War by Sumia Sukkar. The radio drama (broadcast on 8/11/2014) is an adaptation of Sukkar’s debut novel and focuses on the experiences of a boy with Asperger’s Syndrome during the war in Syria. Links to the novel and radio production can be found at the end of the post.

Random and ordinary

AleppoeyewearThere is, I have noted previously, an absence of representations of autism in the arts. Just as women and people of colour have argued that fiction should reflect their lives, so people with an Autistic Spectrum Condition should be able to recognise themselves in literature. While Mark Haddon’s stand-out novel The Curious Incident Of The Dog In The Night raised the profile of autism, there is a need for more, and more ordinary, roles in contemporary fiction for autistic people and their carers (I review a novel which includes multiple representations of autism here).

The subject of war may seem extraordinary but it is ordinary lives which it transforms, as randomly and suddenly as an autism diagnosis. Sukkar is to be applauded for recognising that some of the ordinary children caught in war will bring to it the unique insight of autism. As well as focusing on the challenges which conflict presents, The Boy From Aleppo Who Painted The War explores the possibility that autistic perspectives may help us to new truths. If the scope for suffering for an autistic child during war is great, Sukkar suggests, the capacity for resilience and survival may be great also.

The bunker

AleppoeyewearThe focus of Sukkar’s novel is Adam, a teenage boy with Asperger’s Syndrome who lives with his middle class family in suburban Aleppo. Adam’s relationships with his father, brothers Tariq and Khalid and sister Yasmine are drawn with intimacy and affection; the family is close and their love for Adam evident. This context is important; the war will take a cruel toll on Adam’s family but Adam will receive the support from it he needs to survive.

Although no longer alive, Adam’s mother is a constant presence in the narrative. When Adam’s father, Baba, shows Adam a secret door to a basement room, Adam is surprised to find his own paintings on the walls. Adam’s mother had decorated the makeshift bunker with Adam’s paintings in the hope they would help her son during the disruption she knew war would bring. Baba tells Adam that his mother put the paintings on the wall ‘to keep them safe’. If Adam is ever alone or in danger, he tells his son, he must lock himself in the room: he too will be safe there. This room, I realised as I listened, is a version of dad’s coalmine in my recent post autism and war.

One of the themes of The Boy From Aleppo Who Painted The War is that instead of being a source of support for an autistic child, during war the community becomes a threat. Adam receives some protection from the conflict because he is part of a secure and loving family. Tariq’s death in the early days of the uprising, however, has a profound impact on the family, most obviously on Baba who suffers a collapse. Yasmine, who had the chance to leave Aleppo with her boyfriend but opted to remain with her family, now takes over the care of Adam. Adam observes that his mother understood he was different but ‘always said it didn’t matter’; this acceptance now informs the way Yasmine cares for her brother.

Voices

AleppoeyewearSukkar writes powerfully about the impact of war on Adam’s family although she doesn’t have direct experience of autism herself; in an interview For BBC Radio 4s Front Row (broadcast 7/11/2014) she identified a friend’s child as the catalyst for Adam and acknowledged that her novel had started with the war rather than with autism. Sukkar has, however, done her research; she is aware of the importance of routine to autistic children, for example, and gives preoccupations to Adam which parents will recognise. Sukkar also understands that the disruption of these routines through war will challenge Adam, creating the narrative conflict she needs.

Sukkar is often convincing: ‘Simpson Time’, for example, captures Adam’s interest in The Simpsons and illustrates the way routines are used by Adam to structure his days. While not unconvincing, other descriptions of Adam sometimes lack freshness (a ritual avoidance of stepping on tiles is a bit tired) or feel composite: Adam has special interests in time, mathematical calculations, dictionary definitions, food and cartoons. What I find more troubling, however, are inconsistencies in Adam’s narration which switches between a reflective, a naïve and an explanatory voice.

It is Adam’s ‘telling’ voice I find most problematic. Adam’s awareness of his own difficulties sometimes seem implausible; he speaks lines such as ‘I hate change’ , ‘This is why I hate change’ and ‘that’s why I don’t like touching people’. While I found the impact on Adam of disruption to The Simpsons convincing, this was spoiled by him telling me about the impact. As other characters don’t explain themselves I assume Sukkar felt the need to give Adam such lines in order to interpret his autism for the reader. ‘Show don’t tell’ may be clichéd advice but it is good advice; having characters explain themselves is rarely good and this holds true even if they are autistic. Sukkar could perhaps have trusted her readers more.

Ears and eyes

Aleppoeyewear The Boy From Aleppo Who Painted The War does, however, offer a rich account of synaesthesia and autism. References to the senses are scattered through the piece. Colourful vegetables on a plate are ‘a bowl of emotions’. When Adam eats paint because there is no food he tells Baba it ‘tastes really green’. The sound of protest in the streets is the noise of wolves. Caught in an explosion, Adam feels ‘hot black smoke’ in his body. Oxygen is something that, if you look closely, you can see.

Adam thinks and feels in colour. When his brother Tariq is killed in the uprising Adam says that it has turned Yasmine ‘just grey – all the time grey’. Later, when Khalid is injured, Adam reflects: ‘everything is grey. There is no more colour in Aleppo. We are all grey’. One day Adam finds an ear, which he mistakes for a seashell, in the street; afterwards he is convinced an ear is following him, something which brought to mind my own son’s anxiety about ears. Adam also shares with Dylan a love of water; he dives underwater ‘to hide’ and stays under until his lungs ‘are bursting’. Water, Adam tells us, is his friend:

the water against my skin understands me more than people ever do.

Adam’s sensitivity to touch and sound is also demonstrated through spinning, a behaviour linked to proprioception and balance which triggers pleasurable feelings. One of the most dramatic sequences in the radio production of The Boy From Aleppo Who Painted The War is an encounter with soldiers while Adam is spinning in the street during a trip out with his sister to find food. What follows is harrowing; Yasmine is taken by the soldiers, who beat and mock Adam before leaving him alone in Aleppo. Although Adam is subsequently reunited with Khalid and Baba, Yasmine doesn’t return.

Blood and hair

AleppoeyewearPainting is the only thing Adam has ‘ever really understood’ and now he copes with Yasmine’s absence by painting. When he runs out of art supplies Adam cuts hairs from the head of a body to make a paintbrush and bottles spilled-blood for paint. Hogarth, Adam says, used red for blood; why can’t he use blood for red? The pictures Adam paints on stones at the side of the road are not pretty; ‘they don’t lie’, he says. Adam’s record of the war becomes a truth-telling, a way of knowing forged from and about the blood and hair of the casualties of war. Adam, we are told, is the boy ‘who painted the war so that everyone can see.’

‘They think I paint the same picture again and again’ Adam says but – like eyes – ‘no two pictures are the same’. There has been much speculation about the tendency of autistic children and adults to avoid eye contact. My observation of my son, Dylan, is that although his eye gaze doesn’t linger he notices everything (including eyes) in fine detail. In The Boy from Aleppo Who Painted The War Adam also has an intimate knowledge of the eyes of others, information which has particular importance to him.

Adam compares himself to the pupil of an eye and his father to the white, likening his siblings to flecks of colour: Khalid is orange, Yasmine is ruby and Tariq is green. The image is striking; eyes are not only a means of witness but a way in which members of a family recognise each other. The image also places Adam, symbolically, at the centre of the family. This unique way of seeing enables Adam to produce his extraordinary paintings of the war. It will also help him to find his sister; later, fleeing Aleppo with Khalid and Baba, Adam is drawn by the eyes of a bald-headed woman at the side of the Damascus road: ‘like rubies’, Adam exclaims.

Extraordinary miracles

AleppoeyewearA series of miracles brings a lightness and close to the narrative. I found these slightly unsatisfactory. I wasn’t convinced by the sudden phone call from an aunt which triggers the family’s 200 mile pilgrimage to Damascus. Nor do I believe the way Adam takes charge of guiding the family. Or the sudden appearance of a bus. The discovery of Yasmine is a happy chance but her recovery rather too miraculous for a victim of kidnap and (implied) rape. Although the family has suffered terrible loss and tragedy it ends in the light: ” I can’t stop smiling”, Adam says.

While I don’t mind a bit of luck and miracle, I would have preferred more shadows around the light. Perhaps for purposes of the radio adaptation these events were more telescoped than in the novel; the fact that I intend to buy it and find out is hopefully recommendation enough. And maybe long shadows are drawn in Adam’s closing reflection that ‘all the tears in my body have dried up. I can’t think of anything that will make me cry again’.

Sukkar describes the novel as having started with the war rather than with autism. It seems to me that The Boy From Aleppo Who Painted The War ends with war too. By the close of the radio dramatisation I had almost forgotten the link with autism. There are powerful descriptions of surviving war; a scene where Adam and Khalid cook Tariq’s poetry books in an attempt to extract nutrients from their leather covers for example. Sukkar writes most insightfully, however, about women and war; the depiction of Yasmine’s role in the family’s survival (‘our wings’ as Adam calls her) is as compelling a narrative, for me, as the story of Adam.

References and Links:

Fiona McAlpine (Director) The Boy From Aleppo Who Painted The War by Sumia Sukkar (Radio 4 Drama of the Week, 8/11/2014)

http://www.bbc.co.uk/programmes/b04nqpd0

And here’s a link to the interview with Sumia Sukkar (Radio 4 Front Row, 7/11/2014)

http://www.bbc.co.uk/programmes/b04n695f

Sumia Sukkar, The Boy From Aleppo Who Painted The War (Eyewear Publications, 2013).

Below is a link to the publisher’s website. Eyewear is a small independent press so please consider purchasing directly from them if you decide to order this book.

http://www.eyewearpublishing.com/http://

Autism And The Double: Dylan’s duplicates

I developed an interest in ‘the double’ years before Dylan was born. As well as enjoying double narratives in literature and mythology I was fascinated by twins. For a while I thought I had a twin pregnancy while I was carrying Dylan and my husband and I used to refer to our daughter as ‘the twins’ (in utero and out) although we knew from a scan that she was a singleton.

imagesD16BU1IXSoon after my children were born I came across a study of handedness and pregnancy; left-handed people, the study proposed, could be ‘surviving twins’. According to this theory a significant number of pregnancies begin as multiple pregnancies but in the early weeks, undetected by us, one of the embryos fails. The impact on the surviving twin of hormone levels in the womb, the research suggests, manifests itself through handedness. Both my children are left-handed although neither I nor their fathers are, and I have sometimes wondered to myself whether they are surviving twins.

I’m not aware of any research looking specifically at handedness in autism but it would be interesting to know if the incidence of left-handedness in the autistic population is higher than in the general population (I’ve mused on this issue previously in relation to visual and linguistic processing here).  If it were the case then I can imagine that ‘surviving twin syndrome’ could be an interesting line of enquiry as part of research into the biochemistry of autistic neurology.

Doing The Two’s

I’ve been thinking about the double recently while pondering one of Dylan’s behaviours which I call ‘Doing the Two’s’.  This happened most recently last weekend when I took Dylan to a music shop to choose a new CD.  I usually buy music, films and books for Dylan online because I know what is likely to happen if I give him a choice in a shop – and, indeed this is what happened on Saturday.

double sting 002Dylan loves Sting’s Fields of Gold but, as you can see, he already has a copy. He also has the album on his i-pad so this is actually his third copy of the CD. The shop I took Dylan to is a music-lover’s paradise with rows and rows of stock but Dylan somehow managed to locate the Sting CD and all my attempts to divert with other suggestions failed. I wouldn’t always give in to Dylan’s desire to buy a duplicate of something but on this particular day, for a variety of reasons, I did.

I have been having battles with Dylan about NOT buying duplicates for a very long time.  I have a memory of Dylan as a toddler clutching a video of Fireman Sam at a church bazaar while I tried to persuade him to put it back because he already had it. Although it must have been priced at less than 25p I didn’t see the point in buying Dylan something he already had and was prepared to tough this one out with him for the principle. I carried Dylan screaming from the church hall, telling myself the battle would be worthwhile as Dylan would learn that he couldn’t buy the same thing twice.

Except he didn’t. There have been  many incidents since.  In shops, at charity stalls and in libraries, for nearly 20 years, I have been saying:  No Dylan put it back: we’re not doing the two’s.  I have repeated my explanation to shop keepers and stall holders repeatedly:  Dylan doesn’t understand – he picks up objects because he recognises them – he has one of those already. No we don’t want to buy it thank you very much.

Except that Dylan did. Only recently have I realised just how passionately Dylan wanted to buy all the duplicate items I have refused him over the years.

Dylan’s Duplicates

In the new year, while Dylan was in overnight respite and I was having work done on his bedroom window frames, I took the opportunity to spring clean the room. Dylan is tidy; he keeps his bedroom neat and all his books, DVDs and Videos are in a particular order on his shelves. He knows where everything is. If I move something, or suggest a change in how his things are arranged, Dylan will usually move them straight back. Occasionally he will accept a minor suggestion, however, and he seems to like it when I do a major reorganisation of his room. As is common with autism, it’s the slight alterations to order that can be difficult for Dylan rather than the big changes. On this particular day I moved the bed from one wall to another, involving a switch with some book shelves.  While cleaning up I decided to look through the books to see if there were any I could persuade Dylan to take to the charity shop. I was shocked by what I discovered.

shutteres 015As you can see, Dylan has been Doing the Two’s pretty effectively (and sometimes Doing the Three’s).  I was surprised that Dylan had managed to get duplicate copies of books but even more shocked by the systematic nature of these acquisitions. As  I spread them out on his carpet I realised that there was a pattern to his acquisition: they were Disney books, primarily, and they were from particular book series’. One of the reasons I hadn’t noticed the duplicates before is that Dylan doesn’t keep them together but rather has a system for spreading them across his shelves. This isn’t by publisher (i.e. series type) or title (i.e. all Pinocchio’s together)  but seems to be by some other classification system which Dylan has developed. The fact that there was an organising principle to Dylan’s Doing the Two’s turned it from simple acquisition to collection.  My son, I realised, was a book collector.

shutteres 012As I sat flabbergasted on his floor another realisation hit me.  I hadn’t bought these books for him; in fact I had been the one thwarting Dylan’s book collecting activity. So where had he got these books from?  I leafed through the books. They weren’t library books.  Some of them looked worryingly like brand new copies. Others were torn and raggedy and written in. I found a girl’s name inscribed in one of them:  This book belongs to Emily. Oh dear. With rising suspicion I remembered how, a couple of nights before, Dylan had arrived home from his new Day Centre and scuttled straight upstairs with his pack on his back, instead of leaving it in the room for me to read his home-school liaison book. Could my son be a book thief?

shutteres 009I’m pretty sure that Dylan must have been collecting books either from his Day Centre or from his Respite provider, both of which have small libraries. Perhaps some of the books were taken from school before he left last summer. I’ve no idea how long the collecting might have been going on.  I’m fairly certain Dylan hasn’t been taking books from shops – not while in my care anyway. But Dylan is like lightening; if there’s something motivates him, Dylan has thought about, planned and executed it before you can say Peter Pan.

Why (and Why Again)?

Since my discovery I’ve been pondering the possible reasons for wanting duplicate copies of an object. I started by asking myself what I had duplicates of. I came up with this list:

  • I buy multiple copies of Jenny Diski’s Skating to Antarctica because I love it and like to give it to women friends
  • I have twice mistakenly bought duplicate copies of a book I already had
  • I have multiple copies of Sylvia Plath’s Bell Jar but in a range of different editions
  • I have bought a spare copy of my favourite version of Roget’s Thesaurus as it is out of print and difficult to source
  • I had to re-buy Oasis’ What’s the Story as mine got stuck in my car stereo for a while

Like my son’s, my duplicates seem to involve books. If I look at my motivation for acquiring second copies of something, with the exception of the third item in the list (i.e. error), it seems to be love – though often love is coupled with a fear that the thing I love may be broken or lost.

That reminds me of a dolphin beanie baby called Echo which my daughter loved best of all her collection. One day Echo was lost. My daughter was heart-broken. We told her Echo would turn up again – he would be somewhere. But he didn’t and my daughter continued to be miserable. One day my husband and I agreed that we would buy another Echo. We placed it with my daughter’s toys for her to find the next day. I think my daughter was a bit suspicious; Echo looked unusually clean. But she was satisfied until one day, playing with Dylan’s garage, the original dolphin was discovered in the car wash.  I can’t remember quite what white lie we created but whatever it was seemed to satisfy and the dolphins became firm favourites: Echo 1 and Echo 2.

Might Dylan, perhaps, collect duplicate copies of his favourite books through fear of loss?  Or does he collect duplicates of his favourite books in the way I obsessively collect Plath’s Bell Jar in different jackets? Certainly, Dylan’s collecting across series’ seems to suggest an interest in variety as well as duplication. Many years after she had stopped playing with Echo 1 and Echo 2 my daughter pointed out to me (when I was flirting with the idea of an asymmetric haircut) that it is symmetry which underpins beauty; our aesthetic sensibility finds balance pleasing. Such structures also link mathematics and music, two fields which can attract autistic people.

What if Dylan’s book collection represents an interest in symmetry and pattern? If so, could that interest extend beyond a book collection  to other doublings? Might it explain the way Dylan walks twice around a tree?  Could Doing the Two’s be about imposing symmetry on a life? Whether the explanation is to be found in fear of loss, love of order, a ghost twin or something else, if Doing the Two’s doubles Dylan’s  happiness I can accept two Stings.

double sting 001

Real Books: representations of autism in contemporary literature (part three)

love and terrorThis is the final post in a series discussing representations of autism in contemporary literature. My first post (which you can read here) focused on Naoki Higashida’s The Reason I Jump; while acknowledging the contribution of Higashida’s text I noted the limitations of a singular account of autism.  In my second post (which you can read here) I applied the ‘Magic 30′ theory of representation to literature, arguing that fiction should reflect social reality by including multiple representations of autism. As part of that post I reviewed Catherine Edmunds’ Bacchus Wynd, a novel which includes a number of characters who are affected by autism.

This week I review Poe Ballantine’s Love & Terror On The Howling Plains of Nowhere (Hawthorne Books, 2013). Ballantine’s book is not about autism – its presence on ‘the howling plains’  is almost incidental –  and yet, or maybe because of this, it is a compelling account.  Although Love & Terror involves a single autistic child (Ballantine’s son, Tom), autism is represented as a regular rather than an exceptional part of life.  Here, we are in the realm of magic numbers: after a while, Ballantine writes, “everyone begins to look autistic, everyone fits somewhere along ‘the spectrum’.” 

Love and Fear:  Conrad and the Nun

A friend once told me, while out walking with my son Dylan in the countryside, that  I had a ‘Conradian imagination’.  Away from road traffic I can let Dylan walk alone  providing he is within sight. On this particular day Dylan was running ahead of us. Suddenly I left my friend’s side and sprinted ahead to catch Dylan. Why my friend asked, did you do that? I explained that I had spotted a low bridge on our high trail over a river and feared Dylan might lean out over the side and fall – that the moment before I ran to join Dylan, movie camera footage of him falling had played in my head like a warning. That, my friend said, is a potent mix of love and fear:  pure Conrad.

I have heard ‘love and fear’ referred to in the same breath a few times since – recently my attention was caught by one of the characters in a BBC TV drama (a nun) claiming that at the heart of our actions is always love or fear (and sometimes a combination of the two).  I think that I’ve come to believe this to be true of myself;  parents of children affected by autism, I suspect, find that love grows in ways we could never have imagined , as does fear.

So there was no way, really, that I was going to be able to resist Poe Ballantine’s book when I happened across an advert for it.  Love & Terror on the Howling Plains of Nowhere.  Oh my.  I can’t remember whether I got past the title to discover there was an autistic child in the book, but I suspect I did. There must  have been something more than a title to warrant me spending money on a US import.  Mustn’t there?

Somewhere and Nowhere

ballantine 5Love & Terror arrived at Christmas.  It turned out to be one of those books I spend time admiring before beginning:  attractive paper, typeset in Paperback, stylish publisher’s logo, that ampersand and, best of all, jacket flaps ( I love flaps). Experience has taught me not to judge a book by its cover though:  the proof of the howling plains would be in Ballantine’s ability to turn his nowhere into my somewhere.

The cover blurb of Ballantine’s memoir describes it as:  true crime page-turner, violently funny portrait of a tiny Western town, field guide to saving a bilingual marriage and raising an autistic child, sutra on living with open mind and big heart.  The author (the front flap tells us) travelled America for over twenty years before settling in Chadron, Nebraska.  In the opening paragraph Ballantine recalls his first encounter with the place:

I first came across Chadron, Nebraska, by accident, in 1994. I had borrowed a car, thrown all my meager belongings in the back, and driven west, the direction of escape after disaster, the direction of decline and the setting sun. I intended to kill myself. The farther you go west, the higher the suicide rate gets, and I thought perhaps that would give me the momentum I needed. In America we remake ourselves, though it rarely works out. (p.19)

The early chapter headings reveal the importance of place in Ballantine’s remaking: 1.  Last Stop, Chadron, Nebraska  2.  City of Barking Dogs  3.  Olde Main Street Inn  4.  Wyoming!  5. Mexico.  In Zacatecas, Ballantine meets and marries Cristina, who becomes another location on Ballantine’s journey back to Nebraska (6.  Cristinaland) .  By chapter 7 Ballantine is in Chadron a second time, seven years after he first passed through, this time with a wife and son. The town’s ‘kooky residents’, bars and howling plains suit Ballantine –  though  Chadron, he tells us, is a stopover for most people as you have to be content there:

to subsist solely on friendliness, flannel sheets, books, pink-cauldron sunsets, cool summer nights, high, star-smashed skies, a cupboard full of homemade jams and salsa that your neighbours have made, deer in your backyard, Friday night at the President’s Table, and Police Beat entries. (p.126)

Police Beat is a log of calls to the Chadron Police Department and Ballantine uses extracts from these to hilarious effect as chapter epigraphs in his memoir:

7:13 P.M.  Caller from the 500 block of King St. advised that somebody cut his clothesline in his backyard and hung a scarecrow on it.  He advised he just wanted it on record. He also advised that he was going to keep the scarecrow if nobody claimed it.(p. 21)

Police Beat becomes less amusing, however,  following the disappearance in 2006 of Ballantine’s neighbour, Steven Haataja, a maths lecturer at the local college. Love & Terror on the Howling Plains of Nowhere is Ballantine’s account of his dogged attempts to find out what happened to Haataja (whose body is eventually found burned and bound to a tree in the hills beyond the town) while local police and college officials appear unable or unwilling to investigate the crime. The book becomes a sort of psychogeography with Ballantine walking Chadron and its environs, endlessly pacing hill and plain in the howling nowhere, trying to get close enough to land to learn its secret.

Prams and Pizzas

ballantine2What, for howling plains sake, does any of this have to do with representations of autism? Well, something and nothing.  What is striking about Ballantine’s book, and what distinguishes it from most other books which incorporate representations of autism, is the absolutely ordinary and matter-of-fact way in which his autistic son, Tom, becomes part of the narrative. This is a conscious decision on Ballantine’s part who, when asked by his publisher whether he would be interested in writing a book on autism, refuses ( I think it’s already been done seven million times). Besides, Ballantine isn’t convinced by the autism diagnosis (the jacket flap puts the qualifier ‘purportedly’ before the word).

Ballantine is not a man to accept assumed ‘truths’; just as he challenges the Chadron Police Department’s verdict on the Haataja case, so he is sceptical of the professionals who ‘red-flag’ his son for autism after he starts Kindergarten. This is not, however, a  book about children being wrongly diagnosed with autism, nor a book about the way in which labels can be unhelpful (though it raises both those issues).  The focus of the book is neither ‘autism’ nor ‘not autism’; it is simply life, which for some of us happens to have autism in it. It is this ordinariness – this approach to autistic neurology as absolutely quotidian – which characterises Ballantine’s book. The fact that Tom is represented as Ballantine’s son, rather than as his autistic son,  has a profound impact on the philosophy of the book.  Here is our first meeting with Tom:

Tom walked like a little sailor, erect, chest out, arms swinging freely. He was cheerful, quick with a smile, and when the music came on, he danced…He had an extraordinary memory and could count to 124 at age three and a half. He talked and asked a great deal of questions about the wind, the moon, and storms. When he grew up, he told us, he was going to collect spoons. Tom was the sort of child, as all parents will tell you about their children, who was truly exceptional. (p. 57)

Ballantine does not deny the reality of autism or the behaviours and characteristics which lead to his son’s diagnosis.  He tells us that, as well as a facility with number , Tom had repetitive, ritual, sensory and social behaviours. Rather than consider these deficits, however, Ballantine represents them as part of Tom’s personality. Perhaps the ultimate stage in living with autism’s passions is to accept them, recognising their importance to your child’s happiness. Tom has a special interest in elevators and fire exits (he has numbered the doors in his home and designated his bedroom door a fire exit) and owns two rubber skeletons called ‘Thing’ and ‘Baby Love’.  Ballantine refers to Tom’s interests in the easy way which parents of autistic children may recognise; his narrative is punctuated by detours to check fire doors and ride elevators, with rubber skeletons in tow, as if this were the most natural thing in the world.  On these trips, Tom usually brings along his pram:

Wherever we went in those days, whatever the weather, Tom liked to push his old stroller. Once a passenger he was now the driver, and carried a number of his prized possessions, rubber lizards and skeletons, clothespins, ring boxes, a taped swizzle stick, a belt named ‘Poopy’, a Spongebob Ball cap, a clipboard, and a weed he’d just pulled from the ground, all piled together in the seat. (p. 89)

The walks which father, son and pram take around Chadron are beautifully observed:

…the boy and I travelled together. We tramped about town, visited our friends, shopped for good-looking -tomatoes. We walked along the railroad tracks. He’d often wear his ‘singing shoes’, Mexican black dress shoes that could not have been comfortable but held important meaning for him because he’d been in a school performance with them and loved to sing. He’d gotten in the habit of saying, ‘Let’s dine out, ‘ and then in a tone as if withering from starvation: ‘I need some junk food.’ Everywhere he pushed his stroller full of rubber lizards and other prized possessions. (p. 173)

There is a sense of easy companionship and understanding between father and  son as they bond over Daylight glazed donuts, side orders of bacon and Old McDonald’s.  Ballantine and his son share a love of the outdoors, a non-linear thinking style and a tendency to word play. Ballantine delights in renaming things and places;  the nearby town of Alliance is Alliance and Tigers and Bears Oh My! and Tom gives back as good as his father (p. 232):

“When we get back, we’ll have  lunch. What do you want?”

“Old McDonald’s.”

“We went to McDonald’s yesterday. You can’t eat that stuff every day. It isn’t good for your heart.”

“I don’t have a heart”, he replied. “I have a square.”

“Why do you have a square?”

“Girls have hearts,” he said, “boys have squares”

“It isn’t good for your square then.”

On request, Ballantine ‘makes two spiders’ for his son:

These finger spiders I made, Spidey and Whitey, were his only non-adult friends. Spidey and Whitey loved him, kissed him, crawled up his shirt and made him giggle. In turn he cared for them, made sandwiches for them, put them to bed, housed them in his tents, and made sure they got through the dark woods safely where they attended spider school and sometimes spider church. They were also the bridge when he withdrew emotionally.
I’d make two spiders and then everything would be all right. (p.99)

As a father Ballantine is attentive; his love for Tom draws him respectfully into his son’s world. As a writer Ballantine’s observations are acute and precise; he knows the importance of ‘show don’t tell’.  The result is a tender portrait of a relationship which I found moving and affirming  in its ordinariness. Ballantine is a fine writer – one of the best –  and as well as a true crime page-turner (which it certainly is)  Love & Terror is a zen guide to living with autism.

Ballantine decides, when Tom is six, that they will stop taking him to see the autism specialist in Casper (a three hour journey by plane, $165 dollars an hour). Tom had failed to meet the criteria for Asperger’s and, Ballantine concluded: If he was autistic, it was an extremely mild form, like a slice of pepperoni on a bell pepper pizza. Ballantine had stopped caring about where his son ‘fit along any spectra’ anyway: Tom was Tom. In the end, Spidey and Whitey, the finger spiders, were far more important:

…every day at least once he was attacked by the Kissing Monster or crushed in my arms with love, and I’d tell him a dozen times at least that he was the most fantastic boy in the world, the one I loved the most on earth, the one who made all the difference, and I’d nuzzle his ears until he giggled and he was once again mine. Darkness holds title to half of Creation, children are afraid of it for good reason. One day you are walking along the railroad tracks or up a trail into the wilderness or down the soup aisle at Safeway and wham there it is, nothing really that you can say except a feeble, “Where’s the clam chowder?” Love might seem a sentimental defense, but it was all that I had, it was my only light in the great dark forest below the star-crowned trees.

Real Books

When I was a child my parents wouldn’t let me read during the day. They thought it was unhealthy and would send me outside to play. I used to long for bedtime to come when I was allowed ‘one chapter’  before turning out the light (and, unallowed, would read on, burrowed in the blankets with a secret torch). Nowadays I’m so busy I don’t let myself read until bedtime; if I did, stuff just wouldn’t get done and Dylan wouldn’t get  my attention the way he needs. Reading Poe Ballantine’s book over the Christmas holidays, I found myself longing for bedtime in a way I hadn’t done since I was a child.

I began these three reviews with a memory of an encounter with a mother of an older autistic son who told me that she didn’t read books about autism anymore, she read ‘real books’ again.  Well, Love & Terror on the Howling Plains of Nowhere is a real book. If there’s one thing better than being able to read real books again, it’s reading real books with autism in them. Thank you Mr Ballantine.

ballantine 4

Related Posts:

The Magic 30: representations of autism in contemporary literature (part two)

This is the second instalment of a three-part series on representations of autism in contemporary literature. In last week’s post I reviewed Naoki Higashida’s The Reason I Jump. While welcoming the testimony of a ‘non-verbal’ child I drew comparison between Higashida’s account of his life and my son’s different lived experience. There is a danger, I noted, in generalising from a single story to a wider population. Fictional representations of autism also tend to be singular accounts. In this post, therefore, I focus on the challenge of incorporating multiple representations of autism within literary fiction.

The Magic 30

Recently I attended an event which aimed to ‘recognise and value female talent’ in the city where I live.  The event brought together women from a range of sectors including business and finance, the cultural industries and education.  In the course of our discussions somebody mentioned the ‘Magic 30’. This, apparently, is the proportion of women that organisations need to have on their Boards (i.e. leading and managing) before the interests of women are represented throughout the organisation.

Working in a female-dominated sector I am aware of the issue of over-representation of men in management and interested in any claim to solutions through magic numbers. I’m also interested in the extent to which magic numbers might be applied to other contexts where there is a lack of representation of certain groups in society. In literature, for example, I’ve witnessed an improvement in the representation of  women and girls in fiction within my own lifetime, and have watched with interest as the focus has shifted to the representation of people of colour in literature.

Although such  agendas can feel like a numbers game, or even tokenistic, many people acknowledge that the arts can play a role in promoting a more inclusive society and, through the inclusion of positive role models, increase the engagement and self-esteem of young people. I was reminded of this very powerfully, recently, at a talk by the Nigerian author Chimamanda Ngozi Adichie in which she described the impact on her early childhood of reading all-white classics.

Given the proportion of the population affected by autism – either directly or indirectly – there is surely an under-representation of autism in contemporary literature. Based on the principle underpinning the ‘Magic 30’ you could argue that until autism is reflected in fiction those affected by it will not be fully included in society.  While there have been some stand-out examples of autism in fiction in recent years, for example Mark Haddon’s The Curious  Incident of the Dog in the Night Time, such books tend to feature  autism rather than include it in the regular way that the ‘Magic 30’  implies.  The book I review this week is a noteworthy  exception, adopting a radical approach to the representation of autism in fiction.

Bacchus Wynd by Catherine Edmunds (Circaidy Gregory Press, 2013)

bacchus wyndBacchus Wynd , Edmunds’ third novel, is narrated from the perspective of seven characters whose lives and relationships converge through their encounters in a cafe located on the street which gives the novel its title. Although Edmunds thus directs our attention to place as significant (‘Bacchus Wynd’ is based on Darlington in England) location is not something which particularly impressed itself on me. For me, it was the characters rather than the setting which I found anchoring.

A number of the players in Edmunds’  novel are affected by autism. One of the main characters, Toby, has Asperger’s Syndrome and we also hear a good deal about – though don’t meet – his twin brother Sam who is autistic. Evan, a psychologist involved in the diagnosis of Sam and Toby who has since become a family friend, takes a key supporting role in the novel and there is at least one other character who could have a diagnosis. In addition there is Sylvie, the mother of Toby and Sam, who for me is particularly satisfying.  Sylvie and I share a social role  (mothering and caring for autistic sons) which shapes our lives in specific ways; while such women are not uncommon they are hard to find in fiction and I took delight in discovering a reflection of my social reality through Sylvie.

Bacchus Wynd has a complex structure whereby a different character takes the narrative for each of the 45 chapters. What this gives us is a variety of perspectives on the unfolding action with the reader experiencing the same incidents from the standpoints of the different characters involved. The characters’ overall responsibility for the narrative is not equal, however, with Sylvie taking the baton only three times compared to the nine chapters which are narrated by Emma. The technique is rich and for a writer who wants to explore the lived experience of a character with autism it is particularly useful. It’s possible, for example, to read through Toby’s seven chapters in order to build a picture of  the autistic mind at work.  Here he is reflecting on a walk in the park:

He felt as if he were wearing special glasses that refracted the light differently. The shadows had an unexpected precision; a strict definition he’d never noticed before. This would change again when the leaves dropped and the fractal qualities of the branches became more obvious. Toby loved autumn. The colours became so intense you could smell them. (Toby, Chapter 9, p.44)

It is also possible, through the narrative structure, to compare the perceptions of autistic and non-autistic characters to the same incidents.  Toby is the object of the attentions of two women, Renée and Emma; as Emma is already living with a partner and Renée is old enough to be his mother, their interest in Toby calls for subtle signs and code. Reading the women’s accounts of their attempts to engage Toby alongside his account of these interactions partly reflects the different communication styles of men and women, but the impact of Toby’s Asperger’s Syndrome is also evident. So when Emma (who is unaware of Toby’s diagnosis)  receives an invitation from Toby to stay with him and his mother at their holiday cottage, she discovers his intentions are not what she’d imagined:

The Toby she’d spent so long dreaming about wasn’t the real Toby. They looked the same, sounded the same, talked in the same idiosyncratic way, but the Toby of her dreams adored her.  The real Toby was aloof and distant. She’d been reading far too much into his invitation to the cottage. That had been an off-the-cuff act of kindness on his part – nothing more.  (Emma, Chapter 29, p. 161)

Edmunds’ narrative structure allows us to see just how wide the scope is for miscommunication, especially over the mundane. Here is Toby reflecting on a passing comment about pheasants:

Emma said they had bird brains.  Pheasants are birds, so yes, they have bird brains. Toby didn’t understand why this was funny. They were in the road because British pheasants were not truly wild. They were descended from domesticated stock originally imported from China. This ancestry resulted in birds that were tamer than was safe for their survival. Toby explained this while Emma carried on making sandwiches. When he’d told them everything he knew about pheasants, she put her knife down and suggested they go for a walk on the beach.   (Toby,  Chapter 28, p.154)

And here is Emma reflecting on the same incident:

…everyone laughed except for Toby. He never got jokes. He had other quirks too, loads of them, but they were hard to pin down. He was lost when she went off on flights of fancy, for example. That had upset her at first as she’d so wanted to share her dreams with him, but he couldn’t follow, so that was that.  Now he was talking about the natural history of pheasants, which was interesting enough, and maybe explained their idiocy, but it didn’t have anything to do with what Emma had said. Not really. She needed some sea air to clear her head and suggested a walk across the dunes to the beach.  (Emma, Chapter 29, p.163)

The development of a network of characters in the novel provides Edmunds with plenty of opportunity for multiple perspectives and reflections on autism. Useful perspectives on the spectrum nature of autism are also developed through Edmunds’ gift to Sylvie of two children affected by autism;  it is through Toby and his mother that we hear how autism can affect individuals differently. Here is Toby reflecting on his brother Sam:

He was glad Mother had stopped wearing make-up. She’d had to, because Sam couldn’t cope with the changing colours. Any difference in mother’s eye-shadow or lipstick made Sam scream and bang his head on things. It had taken Mother a long time to work out what was wrong, but she hadn’t worn anything on her face since.  (Toby, Chapter 4, p. 21).

bad hairAs the mother of an autistic adult herself, Edmunds is well-placed to capture some of the unique perspectives of the autistic mind. In creating both Sam and Toby she has attempted to represent something of the spectrum nature of autism, and the similar and different ways in which it can affect children and adults. It is left to Sylvie, the boys’ mother, to reflect on the implications of this:

Outsiders might have supposed Sam needed more intervention on her part, but that had never been the case.  There were efficient and effective systems in place for someone with Sam’s obvious difficulties. Toby’s were more subtle.  He would always be the victim of other people’s ignorance while Sam sailed through life, flapping and yodelling and eating garden soil, not knowing anyone did anything differently.  Toby knew.  (Sylvie, Chapter 41, p. 217)

C Edmunds colourAlthough this review focuses specifically on the representations of autism in Bacchus Wynd, I should note that you don’t need a background in autism in order to enjoy Edmunds’ novel;  there is as much in the narrative (perhaps more) that has nothing to do with it.  My purpose, here, has been to celebrate Edmunds’ achievement in incorporating multiple representations of autism in her novel rather than to critically review it.  Were I to do so I might  take issue with some extraneous narrative detail.  I also think the title and cover slightly surprising choices (a reader could be forgiven for assuming the novel is set in the 19th century). However Edmunds is a gifted artist – as well as musician, poet and novelist – and her cover painting deserves its showcase.

We are, I would suggest, a long way from ‘magic numbers’ in terms of the inclusion of autistic children and adults in contemporary literature. Catherine Edmunds has made a fantastic contribution, however, to raising the profile of autism in fiction. She has done this not only through her creation of credible autistic characters, but in her depiction of characters who live and work with autism. Encountering Sylvie in Bacchus Wynd was almost as affirming for me as meeting Toby and Sam;  in her I understood, again, the importance of encountering people in  books who are like us, and who therefore remind us that we are human and not alone.


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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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