‘L’ is for Llangollen: a road trip with my son

I have an interest in fictional representations of autism as a reader and as a mother. Encountering fictional characters who are autistic or intellectually disabled encourages me to reflect on Dylan and the ways in which I care for him, a process I have found as useful and illuminating as reading a research report or any professional advice.  As a reader, meanwhile, I am interested in the ways in which authors can create ‘authentic’ narratives of autism.

A review of Census by American writer Jesse Ball caught my attention recently. The novel features a character with Down syndrome, rather than autism, but a couple of things drew me to it. Firstly, the novel has ‘personal authenticity’ in that Ball based the character on his own brother, Abram, who died aged 24. Secondly, as well as Down syndrome the character has an intellectual disability and, like Dylan, needs constant care.  In the introduction to his novel, Ball explains why he wanted to write the book:

people with Down syndrome are not really understood. What is in my heart when I consider [my brother] and his life is something so tremendous, so full of light, that I thought I must write a book that helps people to see what it is like to know and love a Down syndrome boy or girl. It is not like what you would expect, and it is not like it is ordinarily portrayed and explained. It is something else, different than that.

I am interested in the way that Ball claims a unique role for fiction in the representation of disability and privileged access for family members in understanding the lives of the disabled. His aim in writing Census, Ball claims, was to place his brother ‘in the middle of it’. This he has done –  although on reading the book I found myself as interested in the novel’s representation of the father as the son…

Census

It is the father in Census who is the care-giver and his response to receiving a terminal diagnosis is at the heart of the novel. With limited time to live, and his wife already dead, the father has to face difficult issues:  Who will care for his son when he is gone? How will his son cope without him? Will he be happy?  These are questions I imagine all parents of disabled adults ask themselves – I know that I do. And, as we age, the questions become more insistent and more terrible. Some days – most days I confess – I am scared to die.

Fiction is good at going to places that make us fearful and from which our instinct is to turn away, but it also has redemptive power. The ‘narrative arc’ of Census is a road trip which the father and son make from the town of A to the town of Z. The father has resigned his position as a doctor to take on the role of census taker. This involves father and son travelling through an alphabetical landscape, interviewing residents of the places through which they pass and leaving a physical mark on those they meet.  The jacket blurb claims that: Census is about the ways in which people react to the son’s condition, to the son as a person in the world. It is about discrimination and acceptance, kindness and art, education and love.

In embarking on the road trip with his son the father hopes to reassure himself about the future:  This father believes that the good is possible. It must be possible.  Could I be as brave and optimistic and hopeful and philosophic in the face of death, as this man I asked myself?

The Magical Town of Llangollen

I struggled with the novel initially. I didn’t really get the tattooing of people they interviewed for the census.  I felt lost in time and space. Where was I?  America?  Some dystopian future? I almost put the book in the ‘recycle’ pile.  But it so happened that as I approached L (the chapters are alphabetical, following the journey taken by father and son) Dylan and I were due to go to Llangollen for Easter. Perhaps I should take the book with me and compare the reactions to father and son in the fictional town of L with the experiences of a mother and son in Llangollen?

 

Dylan and I have spent time in Wales previously but never in the Welsh border lands. I was drawn to it having seen footage of the canal aqueduct at Pontcysyllte on Countryfile. That looked like something Dylan might enjoy, I thought to myself. When I researched the area I discovered that not only was there a canal and aqueduct at Llangollen but a waterfall, beautiful river (the Dee), chain bridge, castle, viaduct, church, abbey and (how much better can it get?) steam train. This promised to be Dylan wonderland – and just as I thought it couldn’t get any better, when I searched for accommodation I found a Station Master’s cottage at Berwyn, one stop up the line from Llangollen, situated by the chain bridge with a view of the Dee and passing trains.

The real town of ‘L’ lived up to its magical promises. The cottage came with complimentary passes for the steam train which we used daily to travel up and down the line, walking stretches of the Dee Valley Way and visiting sites of interest, beauty spots and pubs. Highlights of the week for me were a trip to Plas Newyd (home of Eleanor Butler and Sarah Ponsonby, the ‘Ladies of Llangollen’) and hikes up Velvet Hill and to Castel Dinas Bran. For Dylan, I think, it was rides on the steam train and the experience of living in a cottage with a window seat view of the river and passing trains. He also thoroughly enjoyed our boat trips, picnics, canal walks and pub visits 🙂

 

 

And the people of ‘L’?  How did they react to the son’s condition, to the son as a person in the world?  With acceptance, kindness and love, as I so often find when I travel with Dylan.  The station volunteers returned his firm handshakes. Passing engine drivers waved to him each day. In cafes, pubs and shops, assistants listened carefully as Dylan had a go at ordering for himself.  He was helped into his preferred seat on canal boats and buses. When the heating broke down in the cottage it was quickly fixed so that Dylan could have his bath.  People could not have been kinder.

But it is easy to be kind when someone is happy and calm – the real test is when Dylan becomes anxious or frustrated. On our last day in Llangollen, there was a ‘Thomas’ event.  I was a bit nervous about it, thinking Dylan would not like the crowds and disruption to ‘his’ steam train. Sure enough, when we took the train one stop to Llangollen from Berwyn that morning Dylan flung himself full-stretch on the platform at sight of Thomas. Onlookers were shocked but not troubled or unkind: intuitively, they made space for Dylan to recover himself…

The Fictional Town of L

Census paints a rather different portrait of the fictional town of L. Their arrival in L represents a low point for the census takers:

As my son and I drove down the long slope putting K well behind us, I could see through the fogged glass of the window a long valley presented ahead and on either side.  The remainder  of our trip would be made in a sort of industrial hell interspersed with bands of what might be called wilderness, but what were, in essence, abandoned tracts, towns not thought worth exploiting, and the lands around them.

My condition pressed upon me as we went, and I felt again that we should stop, perhaps that we should even stop for some days, but the first motel we came to was filthy, and  though we bought a room, my soon would not enter it, and we ended sleeping in the car.

                                Will you please go in? Please?

                                He would not go in, not for anything.

The motel was the Leapley Motor Inn, and I confess that I did not want to sleep in the room either.

The next morning, we went to an apartment complex and knocked on the first door we came to.

My son and I had argued about whether people would be different here. Or rather, we both agreed they would be, but he thought they would be nothing like the ones before. I disagreed… (p. 164)

The father and son are increasingly isolated in L, spending time alone and sleeping in their car. The father is troubled by dreams of humiliation, torture and abuse.  He is dizzy and breathless.  At nights, he imagines the car is a coffin. Bleak as L is, however,  it is not terminal: the promise of M (and N and O and P…) still lie ahead for father and son:

There was nothing for it but to continue to Z. And at the same time, as my condition worsened, I felt sure that I would not make it to Z. What then? When there is nothing to do, you do what little there is – what little is left.  (p. 172)

Through the Triangle Window

The father and son do make it to Z. They arrived (by which I mean ‘I finished the novel’) on the last day of our holiday in Llangollen. My road trip with Dylan had provided the space I needed in order to understand and appreciate this very special book. A cover review declares:  ‘I defy anyone not to read its final pages through tears’. Dylan gets upset when people cry so I was glad for the secrecy of my attic room with its triangular window. My experience of the narrative became so powerful that I cannot separate this image from the father putting his son on a train in Z:

After many days, after an almost impossible distance, the train will stop at a little station near nothing. It will have to travel that far – until is almost near nothing. The train will halt,  grinding its metal brakes. The conductor will look around. The conductor will find my son in the seat he has chosen, a window seat from which he will be looking out. My son will be used by then to the traveling. He will have become fond of the train. The conductor will help him up, will get this bag. They will go together to the exit. During the trip, a trip that will last months, maybe even years, the conductor will have become fond of my son… My son will step onto the platform and stand there. He will stand there. The train will pull away.  (p. 240)

The Llangollen trains through my triangle window made the son’s metaphorical train ride heartbreakingly real. What they also made real, however, were the blessings received by the father during the journey they had taken together. Here he is in ‘J’ reflecting on he and his wife’s feelings about their son:

We felt lucky to have had him, and lucky to become the ones who were continually with him, caring for him. I have read some books of philosophy in which the freedom of burdens is explained, that somehow we are all seeking some appropriate burden. Until we find it, we are horribly shackled, can in fact scarcely live.  (p. 153)

Our trip to Llangollen ended with me feeling grateful for the fortune which had bestowed the ‘freedom of a burden’ through which I have learned to live (if not to die).

Note:

Census by Jesse Ball is published by Granta (2018).

 

Sun And Rain

One of the things I enjoy about being at home for Christmas is the way it helps me to see familiar objects in a new light. This is partly a consequence of living in a smallish house;  to make space  for a Christmas tree I have to move things around a little. This year, the tree is behind the front door. As well as creating challenges for Postie and me (I have to scramble beneath the tree to retrieve the mail as he slides it gently through the flap) it means Dylan’s favourite picture is currently obscured by spruce.

I’ve written previously about Dylan’s love of art and the importance to him of a Munch print that hangs on our living room wall. He ‘talks’ about this image even when we’re away from home and the recollection of it is only in his memory: lamp, curtain, cross on the floor, he says. So I figured Dylan wouldn’t miss Munch behind the spruce; he would enjoy peeking through the branches at it, perhaps. And the process helped other images to step forward. Look at the light on the bubbles Dylan, I said, as I finished rearranging the room…

I don’t know if Dylan (or, indeed, the artist) sees bubbles, but I think of rain on glass or water in a bottle when I look at this print, by the artist Sarah Sharpe.  Sarah submitted the piece – entitled Spiritus –  as part of a cross-arts initiative in which visual artists were invited to respond to a selection of poems in a newly-published anthology. Spiritus, entered in response to my poem ‘Lighteater’, was one of the winning images.

Lighteater

Sunday afternoon: a west-facing room.
The sun streams through a pane of glass
above the door, casting a column of held light,
a slide of particles suspended in the air.
My silent son moves trancelike into the room –
walks deliberately as if drawn on thread –
cups his palms together then reaches up
above his head – tries to hold the shaft of sun
in his hands – tries over and over, lacing
his fingers tight then unclasping them.
Surely he has seen this play of light
a hundred times?  Today he is absorbed by it –
tilts back his throat so that his face lifts softly
like a moth to the source – opens his mouth
and walks forward, arms outstretched, the length of it.

 

In ‘Lighteater’ I celebrate Dylan’s relationship with the sun. When I look at Spiritus, I see rain. I like the fact that the companionship between poem and print is elemental, rather than literal; this bringing together of light and water seems to me to be at the heart of their dialogue. The pairing of verbal and visual text also helps me to understand something about Dylan; that his fascination with water is perhaps, at least partly, about its relationship with light.

I wasn’t familiar with Sarah’s work prior to the arts initiative with which I was involved. At the event to announce the prize winning images, however, I discovered that one of the influences on Sarah’s work is her experience as the mother of a child (now an adult) with disabilities. The correspondence in our situations feels to me to be at the creative core of the dialogue between poem and print and in our shared identities as mothers and artists.

 

Notes:

• Sarah Sharpe’s artwork can be found here: http://www.sarahsharpe-art.co.uk/Sarah_Sharpe/Introduction.html
• ‘Lighteater’ was first published in Scintilla poetry magazine and subsequently anthologised in Antiphon, the journal responsible for the cross-art initiative described here. Antiphon can be found at: http://antiphon.org.uk/
• I also refer to ‘Lighteater’ in this blog post.

 

Dylan’s Pictures: stunned into words

In his book Keeping An Eye Open Julian Barnes claims that ‘it is a rare picture that stuns or argues us into silence.’ In my last post I noted that the opposite is true for Dylan; a few special pictures can stun him from silence into words. Reviewing the therapeutic approach to art advocated by Alain de Botton, I asked whether such a framework might help me to understand Dylan’s response to art.

Here I explore that possibility by applying de Botton’s methodology to Dylan’s favourite pictures. To do this I identified the pictures in our home which Dylan particularly likes; it is clear which these are as Dylan spends time with (and sometimes talks about) them in contrast to others in the house which he ignores. I then grouped the pictures according to possible ‘function’. Although I have aligned my categories with some of the functions described by de Botton I started by generating my own functions, grounded in observations of Dylan, rather than attempting to apply de Botton’s schema. This seemed appropriate as de Botton’s typology was developed from a neurotypical perspective and art may have alternative functions for an autistic adult. From this process I identified four categories which I discuss below.

a) Remembering: the comfort of mother

One summer in Margate I stepped inside a vintage shop wondering if Dylan would be patient while I rummaged through clothes. A print of Tamara de Lempicka’s Mother and Child (1931) on the shop wall caught Dylan’s attention. He stood transfixed by it until closing time when (with difficulty) I encouraged him out. I gave Dylan a print of the painting for his 18th birthday the following year; it hangs above his bed and I think is one of his favourite images. I sometimes wonder if its function is along the lines described by de Botton and that its primary purpose is as comforter. My attention is also caught by the unusual eyes, however; perhaps it is those which attract Dylan to this painting?

Some of Dylan’s other favourite pieces involve female forms which I think Dylan connects with mothering. Dylan sometimes names Claude-Emil Schuffenecker’s Madame Champsaur (1890), for example, as ‘mooey’ although I am fairly sure he knows I am not (and was not) the woman in the painting. I have written elsewhere about Dylan’s deep memory of his encounters with this painting while in France and I think he perhaps links ‘the woman with a fan’ to his experience of being a child. Dylan is particularly fascinated by Madame Champsaur’s hands and often says ‘hand’ while looking at the picture. This interests me as when Dylan was young he would frequently take my hand and match my palm against his own, placing them next to each other as if comparing them. He doesn’t do it anymore but I used to think of it as Dylan’s way of working out that he was connected to me.

I could cite other examples of Dylan responding positively to mothers in art; the de Lempicka and Shuffenecker are particular favourites but they are illustrative of a broader preoccupation with madonna imagery. This category aligns fairly well with de Botton’s discussion of William Dyce’s Madonna and Child (which I referred to in my previous post) and with his suggestion that such an image might offer ‘comfort’ to the viewer. In terms of de Botton’s seven functions I would say that the examples I give here are about ‘remembering’.

b) Self-understanding: belonging and community

Dylan has other favourite pictures which incorporate representations of the female form but not in ways which he connects with ‘mothering’. When Dylan first paid attention to the figure in this Oxfam poster I thought it might be the representational nature of the image which appealed to him; symbols are easy for Dylan to make sense of and he can find meaning in line and abstract drawings quite quickly. The figure in this print was the first one which Dylan appeared to recognise and respond to when he was young; it is also the first picture which ‘stunned Dylan into words’. I remember my amazement when Dylan pointed to and named ‘knee’, ‘arm’, ‘elbow’, ‘chin’, ‘nose’, ‘eye’, ‘hair’, ending with a triumphant ‘woman’. Dylan still engages in this naming. I sometimes try to change or develop the features Dylan names but he is not having any of it; in this sense Dylan’s engagement with the picture has become routinised. I’m interested in Dylan’s focus on anatomy. Perhaps it is through this he develops a physical sense of self? This poster belonged to Dylan’s biological father so I enjoy the fact that Dylan has such feeling for it.

Gauguin’s Breton Peasant Women (1894) is a particular favourite of Dylan’s and one which I often find him staring at in the evening in the dining room where it hangs. At such times the picture seems to induce a trance-like state. At other times, however, Dylan likes to talk to me about the picture, naming its features in a particular order as with the Oxfam poster. What interests me about Dylan’s relationship with the Gauguin, however, is that the things he names are inanimate rather than figurative: stick (in one of the women’s hands); bag; rock; sand; shoe. Here, then, Dylan seems to be focusing on the physical world the women inhabit rather than on the women themselves.

I have described these pictures as developing a sense of ‘belonging and community’ as Dylan seems to be responding to the physical experience and the location of the figures in these pictures. This most closely approximates de Botton’s function of ‘self-understanding’.

c) Re-balancing: the love of order

Like others with ASC Dylan can appear more interested in objects than in people. His attraction to the material world is not random and indiscriminating however; he is drawn to pattern and symmetry and to phenomena which shape-shift (such as water and steam). Dylan’s interest in architectural drawing could be considered stereotypically autistic; the attraction of this drawing of Ulm Cathedral seems to be in the number of windows which Dylan likes us to count together.

Dylan’s interest in this French exhibition poster, meanwhile, focuses on the car and, more specifically, the wheels. Dylan likes me to name parts of the car such as the lamps and windows but it is the shape of the wheels which seem to bring him particular satisfaction. Dylan has a natural curiosity about the material world and an appreciation for buildings and machines. I’m not sure I realised this when he was younger but I think it is clearly expressed through his orientation to art.

Dylan’s enjoyment of these prints is perhaps illustrative of the impact of neurodiversity on visual orientation and perspective. If I were to analyse what it is that he responds to in these example pictures I would say it is order and pattern. This may correspond with de Botton’s function of art as ‘re-balancing’ us.

d) Growth: nature and spirituality

Dylan has what I think of as a spiritual dimension which he often seems most in touch with near water and in light. He has a strong orientation to nature and a particular interest in solitary figures in landscape. I bought this watercolour in 2008 at an art fair in Portreath, Cornwall; I wanted to support a local artist (Beth Edge) and I liked that it depicted a spot where Laurence Binyon is reputed to have composed the poem ‘For The Fallen’. When I chose the painting I don’t think I noticed the detail which would subsequently captivate Dylan: two figures sitting on a bench by the Pepperpot, looking out to sea. I wonder if it is the grandeur of the seascape he is absorbed by as much as the tiny human smudges gazing at it?

In Dylan’s very favourite picture a man sits alone at a window looking out across a body of water in moon and lamplight. This Munch painting (Nacht in Saint Cloud, 1890), reproduced as a poster for an exhibition I visited before Dylan was born, is possibly the most important thing in Dylan’s life. It is so crucial to him that I have written into my will that it must stay with Dylan always. I don’t know what it is which enchants Dylan about the image but I have some clues in the words it stuns him to. Dylan asked me, a long time ago, for a word for the reflection of the window frame: ‘it’s a sort of cross on the floor’ I suggested. Later he told me that the diaphanous light at the left hand side of the painting is a curtain. Dylan also fixes on the light above the seated man. All my attempts to offer other details from this dark, indistinct print have come to nothing: ‘Lamp’, ‘Curtain’, ‘Cross on the floor’, Dylan chants.

If I were to apply de Botton’s functions of art to these paintings I would perhaps identify them as addressing the need for ‘Growth’. Analysing their content for ‘the concerns of the soul’ (as de Botton terms it) I might suggest that the metaphysical themes and imagery focus the viewer on the concepts of awe or grace. Maybe Dylan is responding to a compositional aesthetic as much as to a painting’s content, however. An artist once explained the ‘Golden Ratio’ to me and I have sometimes wondered if the relationship between lamp (top), curtain (left) and floor (bottom) in Nacht in Saint Cloud offer Dylan that sort of beauty. Or perhaps he has an intuitive feel for other artistic formulae such as the ‘Serpentine Line’ or ‘Venetian Secret’? The explanation, I suspect, will remain Dylan’s secret.

Rethinking autism and art

‘Art therapy’ usually involves attempts to engage people in producing art. While there are some valuable examples of such work I would argue that it isn’t appropriate for everyone with an Autistic Spectrum Condition. Dylan has no interest in participating in art sessions but, as I hope I have shown in these posts, art is something which is important to him and from which he benefits. It is surely the case that just as you don’t have to play an instrument in order to enjoy music, so you don’t have to hold a brush to derive pleasure from art. An art appreciation model is, perhaps, a therapeutic approach with potentially broader application within autism education and care.

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Note:

Other prints in the home which Dylan enjoys, and which I could have included as further illustration of the categories identified in this post, include La Toilette by Toulouse-Lautrec (1896), a portrait of Vivienne Westwood and a vintage railway poster. Pieces which Dylan ignores include reproductions of work by Schiele, Picasso, Blake, Rossetti and Macke as well as two other de Lempickas, some original paintings by local artists and various posters and maps.

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References:

Julian Barnes (2015) Keeping An Eye Open: Essays in Visual Art. Jonathan Cape
Alain de Botton and John Armstrong (2013) Art as Therapy. Phaidon Press
Grayson Perry (2013) The Reith Lectures, 1-4 [for the ‘Serpentine line’ and ‘Venetian Secret’]

Episode One of Keeping an Eye Open by Julian Barnes (BBC Radio 4 Book of the Week, 22/06/15) is available at: http://www.bbc.co.uk/programmes/b05zhhhy

*  This post builds on my earlier blog post:  Art And Autism:  Psst you. Hey kid. Yes you.

Art And Autism: “Psst, you. Hey kid. Yes you”

In a recent post I mentioned that Dylan enjoys art galleries. Actually I would go further: art is not only a comfortable medium for Dylan, his relationship with it seems essential. In galleries Dylan will stand for long periods before particular paintings, absorbed by the experience to the point of trance. At home I quite often discover Dylan standing stock still and silent, staring at a favourite print. This love of art is something Dylan is at times moved to share; our most frequent ‘conversations’ are about his favourite pictures.

Listening to an extract from Julian Barnes’ new book of essays, Keeping An Eye Open, on the Radio this week I was struck by his claim that ‘it is a rare picture that stuns or argues us into silence.’ For my son, whose world is mostly silent, the opposite is the case. In this post I consider a therapeutic approach to art and in a linked post I reflect on some pictures which move Dylan to words. In trying to understand Dylan’s response to art I ask whether there is something I might learn from his aesthetic about its therapeutic role in his life.

Recovered words, restored sight

Georges Braque, Barnes informs us, claimed that ‘great paintings need us to say nothing at all.’ Dylan, I’m sure, would agree; when he speaks about a painting it is from a place of joy, not need. What Braque had in mind is the explanatory voice which artists hope their work does not require. As Flaubert reminds us, as well as not needing us to say anything, ‘nothing needs to be said’ about a great painting. It is interesting, however, to watch people read accompanying text in an art gallery. In the Louvre with my daughter a few years ago I was astonished to watch a visitor focus on the explanations of paintings to such an extent that it was the text boxes she photographed rather than the paintings. It often seems to me that the majority of visitors read the accompanying caption before looking at a painting – and I could not claim not to have done this myself sometimes.

Grayson Perry, in the 2013 Reith Lectures, noted that our aesthetic is constructed by contexts such as family, education, nationality and religion and validated by ‘experts’ – artists, curators, dealers and critics. Thus as well as being guided by expert views, our response to art is shaped by what is usually a linear narrative through the socio-economic and political contexts from which it arose. Such organisation is helpful, Barnes claims in his essay on the visual arts, because the ‘conversation’ between successive movements is clear and helps us to understand innovation and shifts in beliefs and practices. When paintings are placed next to each other which are not in conversation, he suggests, the result is an ‘aesthetic squabble’ which can leave the viewer disoriented and confused.

Dylan is not swayed by such considerations. Although he responds to what Perry refers to as ‘familiarity’ (i.e. things he recognises), the broader social and historical context of a painting is of little influence and the views of others (whatever their expertise) of no interest. Perry tells us that curators and art dealers consider large paintings and red paintings of high value (based on sales and consumer demand); although one of Dylan’s favourite pictures happens to be quite large I don’t think this (or redness) is part of his aesthetic. Dylan really does plough his own furrow.

So when I visit a gallery with Dylan there is little point in my attempting to hold to conventional ways of viewing. Because text and sequencing are of no consequence to Dylan, the only thing to do is to follow his path. Thus my experience of the space is his: this room is skipped; this one we walk through backwards with eyes closed; in this room we look at one painting; we check everything briefly in this room; at the end of this space, we run twice from side to side; and here we sit down, on this bench, to stare at a favourite painting for as long as I will allow. We don’t read text boxes. We don’t follow any order except for the one Dylan has constructed for this gallery. In this way Dylan restores my sight and is, sometimes, stunned into words.

Psst, you

In Donna Tartt’s The Goldfinch, thirteen year old Theo and his mother are caught up in a terrorist attack while visiting a museum. In the moments following the explosion (in which his mother dies) Theo impulsively takes his mother’s favourite painting – ‘The Goldfinch’ – from the wall. The painting will draw Theo into a world of violence and criminality but also serve as a vehicle for the longing he feels for his mother. Towards the end of the tale Theo’s Guardian, Hobie, reflects on the way a painting can take possession of us:

…you can have a lifetime of perfectly sincere museum-going where you traipse around enjoying everything and then go out and have some lunch. But…if a painting really works down in your heart and changes the way you see, and think, and feel, you don’t think, ‘oh, I love this picture because it’s universal.’ ‘I love this painting because it speaks to all mankind.’ That’s not the reason anyone loves a piece of art. It’s a secret whisper from an alleyway. Psst, you. Hey kid. Yes you. (p.849)

I think Dylan hears that whisper from the alleyway.

Therapeutic uses of art

Alain de Botton, in his book Art as Therapy and in his pioneering work at The School of Life, argues that we need fresh ways of thinking about our relationship with art. The problem with museums, he suggests, is that they tend to display art using academic and historical categories rather than grouping paintings according to their essential ‘function’. Art, he claims, has seven key functions: remembering; hope; sorrow; rebalancing; self-understanding; growth and appreciation. ‘A more ambitious, and beneficial, arrangement’ of paintings in a gallery, de Botton argues, would be one in which works were arranged ‘in line with the concerns of our souls, bringing together those objects which, regardless of their origins in space and time, address the troubled areas of existence. ‘ (p.91)

There could be a gallery named Tenderness to help us to understand what the quality is and why it is so hard to preserve in the conditions of daily life. We could meet Donatello here, but his presence would be subsumed under a higher heading and enriched by items from other parts of the collection. There would be space for Henry Raeburn’s portrait of the Allen Brothers, currently marooned in the British room, because it matters less that this work is by a Scottish painter of the European Enlightenment, as the caption tells us, than that it, like the Virgin and Child, has many important things to tell us about how to bolster the more delicate inclinations of our hearts. (p. 94)

When I encountered de Botton’s work it felt like a light bulb. Could this be what Dylan does? Is he curator of his own exhibition, using principles similar to those outlined in Art as Therapy? Although some of the thinking made me uncomfortable, it offered a possible way of understanding Dylan’s response to art. In particular I wondered if de Botton’s examples might help me to identify and understand the imagery which attracted Dylan. He has this to say, for example, about William Dyce’s ‘Madonna and Child’ (c. 1827-1830):

… Such an object is delicate with our longings. It knows that we might still need to be mothered, even though we are adults, and that we might still need a great deal of reassurance and kindness. So much of growing up is about becoming independent and getting by without the comfort on offer here. Being a mummy’s boy remains a stinging insult to our autonomy. This kind of toughness represents an exaggerated repudiation of an important need. The painting offers comfort by proxy. In our imagination we can get close to Mary without needing to give up the hard-won advantages of adult life (and it might help our identification that the baby looks about 27). In art, the longing that might otherwise damage us and undermine our claims to an adult identity, finds a safe and acceptable home.  http://www.artastherapy.com/

This description illustrates the way in which the grouping of paintings by function is subjective and problematic; there is little doubt about the classification of Dyce’s ‘Madonna and Child’ as ‘Early 19th Century’ but we could challenge de Botton’s reading of the painting. While not convinced by his interpretation of the image I did find myself intrigued, not least because the Madonna is one of Dylan’s favourite images. In a linked post, therefore, I attempt to apply de Botton’s methodology to Dylan’s pictures and reflect on the possible ‘function’ and role of art in his life.

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References:

Julian Barnes (2015) Keeping An Eye Open: Essays in Visual Art. Jonathan Cape
Alain de Botton and John Armstrong (2013) Art as Therapy. Phaidon Press
Grayson Perry (2013) ‘Playing To The Gallery’, The Reith Lectures 1-4
Donna Tartt (2013) The Goldfinch. Abacus

Episode One of Keeping an Eye Open by Julian Barnes (BBC Radio 4 Book of the Week, 22/06/15) is available at:

http://http://www.bbc.co.uk/programmes/b05zhhhy

Images:

The photo of Grayson Perry is via the TES and the image of Julian Barnes’ book is via The Sunday Times.

 

Mother And Son In Aspect Ratio 1:1

One of the things I have missed most while Dylan has been without respite is the cinema. I’ve always loved the movies, especially in the late afternoon, so there was little I liked better on a night off than to catch an early evening film at the cinema across the road from my office. It’s more than four months, now, since I was able to do that. I can hardly believe I’ve managed for so long.

Recently there was a day when I thought I wouldn’t manage. The yearning was physical: I longed for the particular darkness and to feel the tang of marmalade ice cream on my tongue as I waited, in a pulse of white light, for the film to begin. How, I asked myself, could I have this? Screenings don’t start until the afternoon; I couldn’t be home in time for Dylan’s return from day centre even if I went to the first film of the day. Maybe the out-of-town multiplex offered earlier start times but not for the films I wanted to see (or with marmalade ice cream).

I would have to think creatively. The independent cinema I favour offers special screenings for particular sections of the community; once a month, for example, there is an autism-friendly event. I scanned the listings to see if there were an early day group I could join. The new mum club looked good but I didn’t know anyone with a baby I could borrow. The Over-55s? Now that would be the one. There was an 11 a.m. screening that day of a film called Mommy. Perfect.

I requested a day’s leave then checked the blurb. Xavier Dolan wasn’t a director I knew and the film was not one I recognised. My heart fell as I read; I wasn’t sure a narrative about a single mother’s struggle to support her violent adult son was what I needed. I was living this reality; I had coped with two incidents that week already. My plan had been to have a couple of hours not thinking about being such a mommy. I let myself feel sorry for myself for a while. Then it occurred to me that  today’s screening might be a gift: perhaps there was something art could teach this just-coping mommy about life?

*

Once I was seated in the pulse of light I started to relax. This was exactly what I needed, I told myself. There was a hum of anticipation in the auditorium as a man took the stage; tickets for the 55 club, it turned out, included a talk. Xavier Dolan, I discovered, is a young Quebecois film maker who had turned 26 only the previous week. Mommy was his 5th film; his first, made when he was 19 years old, had received an eight minute standing ovation at the Cannes film festival. Dolan is so very talented, the man giving the introduction mused, and still so young, it will be exciting to see where he goes next.

Dolan had, apparently, created a slightly altered version of Canada for Mommy – a ‘stretched reality’ . The film returned to one of Dolan’s favourite themes: the claustrophobic relationship between a mother and son (his previous films included the ‘semi-autobiographical’ The Reason I Killed My Mother). In order to represent the intensity of the mother-son relationship Dolan had filmed Mommy in something called a 1:1 aspect ratio. This would be immediately apparent to us, we were told, as the screen would look narrower than usual. Dolan had claimed this was the only way to shoot his film; the 1:1 aspect ratio ‘mirrors the turned-in circumstances’ of the mother and son. I had guessed that Mommy would be bone-close viewing. Now I was sure of it. I settled back to watch our narrow world unfold onto a narrowed screen.

*

Earlier that week Dylan had become anxious one evening. Later, when I considered the possible triggers, I couldn’t identify with any certainty what might have caused it. He’d had a calm enough day and was watching a film. My daughter was in her room. I was working in the attic. Perhaps it was a scene in the movie that upset Dylan. Or a sudden memory . Maybe it was confusion at the changes since his sister returned. Whatever it was it made Dylan come hunting for me, intent on tearing off my ears (his particular behaviour). Usually I can predict such an attack and ensure I am safe but on this occasion Dylan had me cornered. I held my arms up to protect myself but I knew it was no good. It would have been much worse, I’m sure, if my daughter hadn’t come to see what the fuss was about and pulled Dylan off.

That’s how it can be sometimes. Dylan doesn’t mean to hurt me. It is a flight/fight response to something which has made him anxious and emotionally overloaded. I probably head off three or four times as many of these incidents as I witness. It’s easy not to notice when we get something right, though, or to overlook the times we handle a situation skilfully. We tend, instead, to remember when we miss something or a situation goes wrong. Dolan understands this; he gives us a mommy sometimes at her glorious best and some days way out of her depth.

*

The son in Mommy is not autistic. ADHD is mentioned but not as the root of violence; we are offered social as well as psychological explanations (poverty, an absent father, inadequate social care). Nonetheless I recognised the relationship between mother and son and found links with my own experience.

Dolan wants us to see the closeness of the mother-son relationship as both nourishing and limiting. The mother (‘Die’) is the best thing her son, Steve, has; when everyone else has given up on him, she refuses to. But Die also holds him back. She cannot contain her son’s anger by narrowing his world to the walls of her house; when she tries, the violence turns on her. At these times the screen can hardly contain the charge; it spills out of frame as mother and son struggle for control. The intensity of the relationship (its 1:1 aspect ratio) becomes clear as they absorb the violence, refusing to give up on each other or walk away.

As I watched I kept thinking about a book I’d been reading. Phoebe Caldwell, reflecting on her work with autistic adults with learning disabilities, suggests that challenging behaviour can arise from a failure to differentiate from the mother. In ‘normal’ child development, Caldwell explains, mother and baby enter a ‘dyadic state’ in which baby’s every movement and action triggers a response from the mother. For the baby this is confirming; it learns something about its mother but it also learns something about itself. The baby therefore starts to understand that it is separate from the mother. It is possible, Caldwell suggests, that an autistic baby’s brain is unable to interpret the mother’s signals and the baby therefore fails to develop a separate sense of ‘self’. As a result:

Mother and baby remain bonded in this bubble of infantile need – infant because it needs to survive, and mother because she is drawn in by the maternal instinct to meet infantile need. The mother’s agenda remains the child. The baby may grow physically into adult but remains in the infantile state of critical need for the mother’s nurture. It still retains the fear of extinction if it feels it is not receiving this nurture or that the ‘dyad’, the infant survival state, is threatened. (Caldwell, 2006, p. 140)

Violence and aggression are common, Caldwell claims, where there has been a failure to separate from the mother as an infant. When the situation is complicated by autism, she suggests, it is extremely difficult to establish separation as an adult. Direct physical separation, Caldwell explains: ‘simply heightens anxiety, which sends the adult-infant back into the bubble.’ (Caldwell, 2006, p. 141). Recently I have been asking myself whether Dylan and I could be in a dyadic bubble. Perhaps, I reflected as I sat in the darkened cinema, this is what linked me to the woman on the narrowed screen?

*

Viewed through the lens of failure to differentiate from the mother, Dolan’s film made much sense to me. There are other representations of mothering in the film, however. The neighbour, Kyla, for example who befriends Die and Steve. Although we are aware Kyla has children, we don’t see her performing her mothering role; this part of her identity is ‘bracketed’. Kyla’s initial contact with Die and Steve is as a mother-son unit but she soon develops friendships with them as separate individuals. ‘From the point of view of the outsider ‘, Caldwell notes:

the mother/adult-infant bubble ‘feels’ exclusive and others involved in care will feel shut out. It is difficult to cross the boundary either way – the feelings involved are so intense and primal. It requires enormous emotional effort to establish communication between the different parties involved in care since all parties will feel protective. However, a real sharing of feeling may be almost the only way to stand back and see what is happening. (Caldwell, 2006. p. 141).

This process is, I think, one of Dolan’s preoccupations. When Kyla first gets drawn into the mother and son’s world, Die is struggling to establish boundaries that she and Steve can keep. Kyla’s increasing involvement in their lives is transformative. She gives Die a break from caring; she shares some of the practical and emotional responsibility of parenting Steve; she equips mother and son with education and life skills; and, crucially, she models alternative (non-maternal and non-infantilising) ways of building relationships.

Part way through the movie it seems that this support will be enough. It’s a film about community, I thought to myself; Dolan is inviting us to consider society’s role in supporting families. Mommy does not, however, resolve so simply. Unable to continue supporting her son, even with the help of Kyla, Die turns Steve over to the authorities. In a harrowing closing scene we are reminded that there are no winners in this situation. If you are vulnerable and troubled – because you are autistic, perhaps, or have ADHD or learning disabilities or are anxious or mentally ill – then you will struggle to receive the support you need either at home or from the state.

The laws on care and incarceration which Dolan explores may be a ‘stretched reality’ but they didn’t feel too far away from where we are or might be in my own son’s life time. While Steve’s relationship with his mother is claustrophobic and limiting, public services are depicted as chronically damaging. There is a sense in which the relationship between the mother and son, for all its flaws, had been the greater resource; for while such a relationship can be claustrophobic it can also be enabling. Although by the end of the film Die can no longer manage alone, she had at least tried to confound the skeptics; from the ‘turned in’ circumstances of a mother and son, stretched vision can also come. Mommy turned out to be gift indeed.

References:
Dolan, Xavier (2014) [Director] Mommy
Caldwell, Phoebe (2006) Finding You Finding Me. Jessica Kingsley Publishers

Images:
Showroom cinema by libcom.org;  Mommy by soundonsight;Xavier Dolan by english.rfi.fr; interior of the Showroom by thechildrensmediaconference

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

In 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

There 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

The 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

Sukkar 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

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

Painting 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

A 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 War: on being anxious and absent

I grew up in England during the 70s and 80s in the era of superpower politics. It was a nervous time; as East and West squared up to each other the threat of nuclear warfare appeared real. Or at least that is how, as a teenager, I perceived the world.

During adolescence my interest in politics was both empowering and a source of anxiety. In the early 80s, under the leadership of Thatcher, Reagan and a trio of old guard Presidents of the USSR (Brezhnev, Andropov and Chernenko) superpower politics reached new levels of hubris. I feared that in a fit of pique a President or Prime Minister would press one of the buttons located (it was said) in Downing Street, the White House and the Kremlin. These, we were told, would launch the missiles which would trigger a global nuclear war.

If it’s a little hard for me to think myself back to that time now I need only remember the publication in 1982 of When the Wind Blows, Raymond Briggs’ graphic novel about nuclear war (later released as an animated film). This was followed in 1984 by Barry Hines’ Threads with its nightmare vision of a post-nuclear world; Threads would have the additional impact on my nervous heart of having been filmed in my hometown.

This climate affected me deeply; although my first love was literature I opted to study History and Politics at university. There I would meet others with similar anxieties. I remember in particular a friend who left his notebook in my room one day, open at a page on which he had doodled a mushroom cloud. We were in Boston, Massachusetts, in the summer of ’82. I can still recall his inscription beneath the picture: “I am afraid the world is going to blow up and I won’t see mom and J [name of his sister] again.” I felt uncomfortable reading his private reflection but took strange comfort from our shared fear.

The bunker

The following summer the friend visited me in England. As well as spending time in London, where I was a student, I took him home to the Yorkshire coalfields where my Dad worked. The area would become the focus of fierce confrontations between the miners and Government as Thatcher embarked on a programme of pit closures the following year. In the summer of ’83, however, our concern was not yet with coal; our anxiety was still, predominantly, the risk of nuclear war. It must have been around this time that I had my first conversation with Dad about what we would do.

Dad, what will we do if a nuclear bomb drops? I mean, I know what will happen – but what would we do? Straight afterwards I mean?

Well now our Elizabeth it’s funny you should ask me that. I’ve asked myself the same thing.

Dad’s answer surprised me. I hadn’t realised that grown-ups had these thoughts too but Dad, it seemed, had a plan. At the first sign there was something wrong, he said, I should get home as quickly as I could. Then we would go together to the colliery where he worked. We would go underground. The mine shaft was deep and the tunnels extensive. It would be the safest place to be in an attack. Dad had thought it through. People who didn’t work at the mine would head there too, he said. There would likely be a stampede. We would have to be quick to have a chance of getting down. People wouldn’t stand politely in line offering their tallies (the metal tags used to clock miners in and out) for admission.

After this conversation we updated each other with our plans from time to time. I suggested that leaders would emerge; decisions would be made about who should get a place in the paddy trains. Maybe Dad would be seen as someone worth making space for; he was a Sparky so could be useful. I, meanwhile, didn’t have anything to offer. They’d need people with brains as well, Dad reassured me. And so I spent the rest of the decade making a note of the nearest mine (or tube station) and collecting literature on nuclear warfare.

Anxiety, adolescence and autism

Looking back on those years it seems to me that what I, and other young people, suffered from was generalised anxiety. The perceived threat was constant but removed from our everyday lives; the idea of a finger on a button in some distant place, causing the release of something invisible but deadly, created free-floating worry. I don’t mean to suggest this is how I lived each day; I spent more time dancing than worrying, happily. But anxiety was certainly part of my youth.

If adolescence is a time of idealism and questioning, and if young people are vulnerable to anxiety about the future, then presumably the current climate is as scary to young people today as the cold war was to me. Current threats may feel less abstract than nuclear war appeared to those of us who came of age in the ’80s but this doesn’t reduce the potential for anxiety. I’ve had some opportunity, as an adult, to witness the impact on teenagers of accounts of war. Poetry from WWI continues to be a mainstay of the school curriculum in England while literature which focuses on the experience of women and children is a popular approach to teaching young people about WWII (Ann Frank’s diaries for example). I have seen some young people break down when encountering these and other accounts.

In my last post I raised the issue of how and what we tell autistic people about war. Dylan’s learning disability is significant enough to affect his ability to engage with the concept intellectually. As he is also lucky enough to live in a place where he doesn’t have direct experience of war, Dylan’s knowledge is limited to the few films he watches which include battle scenes (Lord of the Rings, for example, and Brave). Recently, during a meeting to discuss changes in Dylan’s behaviour, a psychologist suggested that Dylan may find it difficult to separate fantasy from reality. If he is watching a DVD in which a human is swallowed by a whale, she said, or a boy grows ears like a donkey, then Dylan may be anxious that these things could happen to him. Perhaps, she said, Dylan’s distress is caused by increased anxiety as he tries to make sense of the world through older eyes.

It was interesting and useful for me to hear this. Perhaps I should have realised before. Dylan may be autistic with a learning disability but he is probably still experiencing some of the anxiety which I felt at his age, albeit differently triggered. I had speculated for a while that certain story lines in his DVDs may be the cause of Dylan’s distress – separation narratives such as a baby dinosaur losing its mother for example – but having watched Dylan viewing his films in the last couple of weeks I think fighting makes him anxious too.

The attic

One of my recurring dreams is set in a post-apocalyptic world. Over the years it has changed in detail but the context is the same: I am wandering in a familiar city, trying to get to a place of safety. I suspect I am not alone in such imaginings; along with falling, being chased and railway stations it is, apparently, a fairly standard dream. One of the things which interests me, though, is how the narrative changed after I had children and especially since I became a carer.

These days my war dream is likely to involve a desperate attempt to save one or both of my children from various dangers. These may be natural disasters which I must survive by physical strength or danger from an enemy who I must outwit. Often, the situation presents itself as challenging because of Dylan’s disability. So in one version of my dream, for example, we are in a hiding place which requires us to be silent. I assume the source for this is Ann Frank’s diary with its account of hiding in an attic room; occasionally I use an extract from her diaries with students and perhaps the discussion emerging from these sessions triggers my imagination. In my dream, however, what becomes horribly scary is my inability to ensure Dylan’s silence.

This fear of not being able to conceal ourselves because of Dylan’s disability is a narrative which resonates with that of other vulnerable groups during wartime. As well as my concealment dream I have conjured visions of pilgrimage, famine and siege, each of which presents particular challenges within the context of autism: being confined to the house, not being able to eat and having to walk somewhere unspecified would all be difficult for Dylan.

These narratives may emerge in dreams but I imagine they touch on a reality. If you are autistic a particular challenge of war, presumably, would be the breakdown of structure and routine. Meals would be an issue for someone like Dylan who eats only a limited range of foods in a specific colour. There would, of course, be no DVDs. That would be hard. No baths. No trains. No day centre. No going outside. While these examples may seem trivial from an everyday perspective, from an autistic perspective the loss of routine can represent a loss of self. For Dylan, routine is enabling and, I think, keeps anxiety at bay.

Actually, I find it very difficult to comprehend what would happen. I don’t know how someone autistic would survive a warzone. My dreams present me with these problems and unanswered questions again and again.

Where have all the autistic children gone?

And because of this I have made a point, over the years, of examining newsreel footage from war zones and scenes of natural disaster. Where are the autistic children I ask myself? They never seem to be in camera; the silent children waiting patiently in line for food rations, or sitting quietly in the corner of a makeshift shelter, do not remind me of my son. The mothers the reporters interview do not refer to the difficulty of managing with an autistic child to care for. I cannot believe that it is because autism doesn’t exist in these places. Are they lost or just out of camera? Where did they go, the autistic children?

A couple of weeks ago my attention was caught by a trailer advertising a radio drama, The Boy from Aleppo Who Painted The War, based on a novel of that title by Sumia Sukkar  (Eyewear Publishing, 2013). The story follows the experience in war-torn Syria of Adam, a boy with Aspergers Syndrome. Given my longstanding curiosity about the absence of autistic children from media accounts of war, I listened with interest to this fictional representation. Perhaps it would provide an answer and an ending to my dreams?

In a future post I will review the radio production…

Images:

• The photograph of Soviet Submarine Classes was taken by me at Dungeness Lighthouse in Kent. I also took the photographs of an Orgreave miners’ tally; a Government information leaflet and an anthology of WWI poetry. 
• The images for When the Wind Blows and the Threads DVD are from Wikipedia
• The image from Brave is via Pixar.Wikia.
• The images of mines are from the BBC (pit head) and miningartifacts.org (underground)
• Scenes from Threads are used in ‘The attic’ section of this post: these are from sheffieldhistory.co.uk except for the traffic warden who is via showroomworkstation.org.uk (Sheffield’s wonderful independent cinema).
• The image of the Sumia Sukkar novel is via Eyewear Publications.

The Little Mute Boy: autism in translation

In a previous  post I reflected on the way we keep some poems as talismans, pinned to walls and notice boards. This week I found a charm poem taped into one of my old notebooks.

The Little Mute Boy

The little boy was looking for his voice.             
(The king of the crickets had it.)                     
In a drop of water                                                   
the little boy was looking for his voice.

I do not want it for speaking with;                             
I will make a ring of it                                                    
so that he may wear my silence                            
on his little finger

In a drop of water                                                          
the little boy was looking for his voice.

(The captive voice, far away,                                          
put on a cricket’s clothes.)

The poem is by Federico García Lorca, a writer who has been important to me in recent years. I didn’t always care for poetry in translation; sound is as integral to a poem as meaning and I wanted poetry in its first language. But then, four years ago, a Lorca translation saved me.

 Córdoba             

I was in deep grief; not over Dylan, this time, but my daughter from whom I had been suddenly separated. One of the ways in which it affected me was that I found myself unable to write. I had written poetry all my life; hard times had not previously silenced me. ‘The blood jet’, as Sylvia Plath wrote: ‘ is poetry/there is no stopping it.’ And yet suddenly I couldn’t make a sound. Nothing made sense to me. I was inhabiting a world of confusion and doubt; finding the words from or about the place seemed impossible.

A poet friend, gently concerned, gave me a copy of Robert Lowell’s Imitations for Christmas that year. I might find reading poetry in translation helpful, he suggested, as it would engage my heart and mind differently. Soon after, he called round again, this time with a Lorca poem in the original and translation. My friend was taking a Master’s course in poetry and one of the exercises he had been set was to produce a version of the piece. Why didn’t I have a go too? If I could experience the poem without thinking too much about what it communicated then I might find I could catch its rhythm; perhaps the spirit of the language could restore me to sound.

 Canción del Jinete  /  Song of the Horseman

Córdoba  /  Córdoba
Lejana y sola.  /  Far off and solitary.

 Jaca negra, luna grande,  /  A black horse, a round moon
y aceitunas en mi alforja.  /  and olives in my pack.
Aunque sepa los caminos, /  Although I know the roads
yo nunca llegaré a Córdoba.  /  I will never get to Córdoba.

 Por el llano, por el viento,  /  Across the plain, into the wind,
jaca negra, luna roja.  / a black horse, a red moon.
La muerte me está mirando  /  Death is staring at me
desde las torres de Córdoba.  /  from the towers of Córdoba.

 ¡Ay que camino tan largo!  /  Oh what a long road!
¡Ay mi jaca valerosa!  /  Oh, my brave horse!
¡Ay que la muerte me espera,  /  Oh, death is waiting for me,
antes de llegar a Córdoba!  /  before getting to Córdoba!

Córdoba.  /  Córdoba.
Lejana y sola.  /  Far off and solitary.

That Christmas I read Lorca’s Horseman. Its melancholic rhythms and pace appealed but it was the moon which caught me. I remembered my Grandmother telling me to look up at the moon when I was away from home and remember she’d be looking too. I knew my daughter had, in turn, heard this from her Grandmother. Perhaps this moon, passed down the spindle side, was my song.

fall (my gone daughter)

dearest beloved 
grain moon     our same moon

my nut-eyed little bear (mater dolorosa)
a cotton square soaked in scent
the grainy aerial view
of woods where you’ll grow

if I’m sorrowful and red-eyed
my little bear has been sharp-clawed
torn us from the black earth
faces appear in the night     (and dissolve)

I stand aside
fruit moon     little blood-eyed bear
loss is hiding in your fur
fastening ribbons in our hair

falling leaf moon       our same moon
dearest beloved

*Grain (August), Fruit (September) and Falling Leaves (October) were Anglo Saxon names for the moon.

My version of the Lorca poem wandered so far from the original that I didn’t feel the need to provide an epigraph ‘After Lorca’. I can feel the DNA of the poem, though, in its structure (2, 4, 4, 4, 2), imagery and voice. And so Lorca saved me: the poem was my breakthrough back to sound. Later, fall (my gone daughter) would win a prize in the Ilkley Poetry Competition. By then my daughter had returned; one of my happiest memories is of her being in the audience for the prize-giving.

The cricket

And because Lorca had saved me, my prejudice against translation faded. So when I encountered The Little Mute Boy one day I paid attention. The English version, translated by the American poet WS Merwin, delivered an instant strike to my heart. I was, as with De La Mare’s Sea Boy, transported into Dylan’s world.

What is it about the poem which works such magic on me? Mostly I think it is the way it makes me re-think the meaning of ‘voice’. Here, the voice becomes something which is concrete rather than an abstract concept. I like this transformation of sound into object; rather than feel frustrated by Dylan’s silence I can visualise it as a ring on his finger.

But such things can be lost, given away, stolen or bartered with. The idea of bartering with a voice reminds me of Ariel in The Little Mermaid who trades her voice for legs. In Lorca’s poem, however, a voice can be desired not in order to be used (‘for speaking with’) but simply to be worn as adornment or to be magically transformed into something else (a cricket for example). Not only does the ‘captive voice’ in the poem ‘put on cricket’s clothes’, it becomes king of the crickets. Crickets, of course, are famed for their night song; the stolen voice thus becomes more beautiful and magical than in the throat of a human. Because Dylan is so utterly absorbed by Pinocchio, the cricket in the poem also puts me in mind of Jiminy Cricket, the puppet boy’s conscience. The Lorca poem offers such comforts: from Dylan’s silence I can make crickets sing and golden rings.

El Niño Mudo

El niño busca su voz.
(La tenía el rey de los grillos.)
En una gota de agua
buscaba su voz el niño.

No la quiero para hablar;
me haré con ella un anillo
que llevará mi silencio
en su dedo pequeñito.

En una gota de agua
buscaba su voz el niño.

(La voz cautiva, a lo lejos,
se ponía un traje de grillo.)

 The sky is,

Once I’d appreciated translation it opened up new vistas especially as my daughter (with whom contact was re-established) had developed a passion for languages. The paradox of my children was not lost on me; one who didn’t speak and the other fluent in three languages. That summer I sent my daughter poems by Jacques Prévert, Pablo Neruda and Paul Verlaine. One weekend I received a rare phone call from my ex-husband, the tension in his voice palpable. Our daughter would not be able to catch the train that day to visit as planned; she had to stay and put something right. She had, it transpired, taken paint from her father’s shed and decorated a road. The road in question may be narrow and surrounded by lochs and mountains but it leads to somewhere not nowhere; in fact it is the only way into the community where my daughter was living. Everyone in the village had to travel that road, sometimes twice or more a day. The Verlaine poem (in pink) was not something you could ignore.

Le Ciel Est, Par-dessus le Toit

Le ciel est, par-dessus le toit,                                   
Si bleu, si calme!                                                     
Un arbre, par-dessus le toit,                                     
Berce sa palme.

 La cloche, dans le ciel qu’on voit,
Doucement tinte.
Un oiseau sur l’arbre qu’on voit
Chante sa plainte.

 Mon Dieu, mon Dieu, la vie est là,
Simple et tranquille.
Cette paisible rumeur-là
Vient de la ville.

-Qu’as-tu fait, ô toi que voilà
Pleurant sans cesse,
Dis, qu’as-tu fait, toi que voilà,
De ta jeunesse?

Later, I would discuss the difference between public art and graffiti with my daughter; her lettering was impeccable and the poem beautiful, but what gave her the authority to decide what should be written on a public highway? What if someone painted an offensive poem on the road – about autistic people for example? Painting the poem, my daughter countered, was the most powerful act of community she had engaged in. As a result, she had got to know neighbours and people she had not previously spoken to. Out of her act came friendships and respect. No one in the village had expressed anything but support for her. Even so, her father was concerned that he would be liable for street cleaning if anyone complained; it was, technically, defacement of public property. So my daughter wasn’t able to take the train that day because she had to paint it out with bitumen.

 On the road

When my daughter painted the poem in the road I’d asked her whether she planned to leaflet the community with a translation: mais non, she’d replied. Soon after, my daughter returned to live with us. Sometimes I’d catch her muttering at me in words I didn’t understand: speak English please, I’d say. Perhaps my children weren’t such a paradox after all; I needed as much skill to translate my daughter’s speech as Dylan’s silence.

If poems are powerful because they help us see the world with fresh eyes, poetry in translation makes us look twice; it can take a second language, sometimes, to understand a mother tongue. Le Ciel Est, Par-dessus le Toit is a talisman for my daughter as The Little Mute Boy and The Sea Boy are for me. The influence of these poems endures: on a Scottish road, I’m told, pink paint is showing through bitumen. I like to think that, nearby, the king of the crickets is singing.

The Sky is, Above the Roof

The sky is, above the roof,
So beautiful, so calm!
A tree, above the roof,
Lulls its palm.

The bell, in the sky, that one sees,
Gently rings.
A bird on the tree that one sees,
Sings his complaint.

My God, my God, life is there,
Simple and quiet.
This calm rumour
Comes from the town.

What have you done, O you there
Crying continually,
Say, what have you done, you there,
With your youth?

References

• Elizabeth Barrett, fall (my gone daughter)
• Frederico Garcia Lorca, El Niño Mudo/The Little Mute Boy (transl. W.S. Merwin)
• Frederico Garcia Lorca, Canción del jinete/Song of the Horseman (transl. from http://es2en.blogspot.co.uk/2005/11/federico-garca-lorca-cancin-del-jinete.html)
• Paul Verlaine, Le Ciel Est, Par-dessus le Toit/The Sky is, Above the Roof (transl. my daughter)

Road art, and photographs of the road art, are by my daughter.

Ways Of Drowning: water, autism, the sea etc.

For I was born the sea’s eternal thrall 
~ Sea Longing, Sara Teasdale

A small bottle of almond oil caught my eye in the Asian foods section of the supermarket last week. I lingered over it, pulled by two memories. The first was of a boyfriend’s sister telling me that she soaked her hair in almond oil overnight. The second was of a midwife at the hospital where Dylan was born asking my mum to bring almond oil with her next time she visited.

Shops did not routinely stock nut oils in the early 90s so I was impressed when mum turned up with a bottle the next day. The midwife showed us how to massage the baby with the oil. He had been born with skin flaking like tissue paper from his body. It was sometimes a sign of post-maturity, the midwife said. Was he an overdue baby? But Dylan had appeared more or less on cue, his birth only slightly delayed as if (I reflected later) to coincide with a high tide and full moon. His skin was a mystery. Mum and I rubbed the oil into the tiny soles of his feet and the palms of his hands with our finger tips. It’s nice for baby to be massaged, a passing midwife commented: he’ll like that.

The Caul

When Dylan was diagnosed autistic, one of the things I fastened on in my search for cause was his difficult birth. I have written elsewhere about my long labour and the way Dylan’s head was born but then withdrew. Later I would read in African folk lore that magical spirits can obstruct a birth. I would also recall that it is magical, in English folk lore, for a baby to be born in its caul. My brother’s had been intact at birth and Dylan’s might have been  had a midwife not broken my waters. My poem Ways of Drowning opens with these births.

It had felt like an ordinary birth
(my mother’s third) until she heard
the midwife’s urgent voice: Forceps quick
her astonished words: This one will never drown
at sea – he’s one in a million, love, born in a shroud.
My brother does not swim in freshwater,
cannot relax in the bath.
*
My waters would not break: I laboured three days
with membranes intact until a siren midwife stuck
a sort of crochet hook up my vagina – wriggled it around
between the ebbing contract of my womb – tore the sac.
The head bore suddenly down on me: flaking and wrinkled
in sloughing skin, he beached reluctantly to spend his life
in search of underwater – wait for me to falter, let him slip.

The first stanza of my poem ponders a darker side to the caul’s charm; as the protection is specifically against drowning at sea, I imagine my brother reluctant to enter water where he isn’t protected (a lake, say, or bath). A suggestion implicit in the second stanza is that by breaking my son’s caul, I not only destroyed the protection he might have had, but made him vulnerable: my baby’s arrival with flaking feet signalled an affinity for water, his desire to be under it.

The naming

I will go back to the great sweet mother,
Mother and lover of men, the sea.    
~ The Return, Algernon Charles Swinburne

Only after I had named my baby did I realise that I’d called him for the sea. I had intended it as an homage to Dylan Thomas and Bob Dylan, not the waves. Still, as Dylan had been born in a seaside town it felt appropriate; I’d held him to the high window so the first thing he saw, after me, was the sea. The serendipity of Dylan’s name soon became apparent. Before I noticed the symptoms of autism I’d puzzled at the pull of water; not only was Dylan soothed by it, he could sense its presence. I describe this in my poem Into The Blue.

He is a diviner:
his body shakes at the prospect
as he veers swiftly from my side, flapping and trembling

to silent springs bubbling from underground.
He has led me to still fountains, hidden wells and troughs;
searches through his picture books for lakes and lochs.

The poem goes on to describe my urge, in sea, to ‘loose my grip, let him go’ believing that he ‘would skim easily/across the water’. I use the image of a butterfly to suggest transformation; in imagining such a re-birthing, I make the sea more of a mother to Dylan than me.

Merman

And all the mermen under the sea
Would feel their immortality
Die in their hearts for the love of me. 
~ The Mermaid, Alfred, Lord Tennyson

It wasn’t only Dylan’s first name that turned out to be appropriate; years later, on hearing Dylan’s full name, a child would ask why I had called him after a girl. But I haven’t, I replied, confused. Ariel, the child told me, was the name of the little mermaid: she was a girl. I had intended Dylan’s middle name to refer to Shakespeare’s The Tempest and to Sylvia Plath, not a Disney film.

For years I fielded questions wearily. No, Dylan’s name was not because of The Little Mermaid: I had never seen the film and knew nothing about it. And actually (by the way) Ariel was a male name. But then out of the blue, on the run-up to Dylan’s 20th birthday, he developed an interest in The Little Mermaid. A year later, Ariel the mermaid is Dylan’s heart’s delight.

I have written elsewhere about the impact of film on Dylan. While Disney has been the trigger for some positive learning, Dylan’s love of Disney also has its challenges. Given his passion for the sea, for example, Dylan likes to copy the underwater sequences. I can understand why he would do this; the action tends to be exciting and lead to narrative transformation. Unfortunately, however, Dylan’s attempt to copy the underwater antics of his favourite characters is potentially disastrous.

As a non-swimmer Dylan is at high risk in water. Lacking awareness of its dangers, he has been known to leap into pools and wade out to sea. Dylan would, I am convinced, simply keep walking into the ocean. I have had to yank him up from the bottom of the bath and from swimming pools repeatedly. After an incident when Dylan had to be rescued from the deep end of a pool where he had leapt, fully-clothed, after a lesson, staff at Dylan’s school decided they were no longer able to take him swimming. Supervising Dylan at the edge of water – beaches, harbours, river banks – makes me nervous.

That torn caul could not possibly be the cause of Dylan’s vulnerability in water. Still, I think about it sometimes. It’s strange that I prefigured the way Dylan would ‘spend his life/in search of underwater’ in a poem written years before. This, of course, makes me even more nervous.

Elemental

I am too long away from water.
I have a need of water near. 
~ Exiled, Edna St. Vincent Millay

Years ago a Medium told me I should always live by water. The simplicity of it appeals; that I am the best I can be by water. There is some truth in it I think. I have always been a swimmer. Walking by water soothes me. I am in awe of the sea. Perhaps that is what distinguishes my simple love of the sea from Dylan’s more elemental need. Dylan isn’t in awe of the sea: he wades in as if it is home.

The Sea Boy

I am the sea, I am the sea!
~Mana of the Sea, D.H. Lawrence

It is the sense of exile strikes me; being away from the sea is represented, in literature, as estrangement from self. This idea is in The Little Mermaid as well as the great sea poems like Coleridge’s Ancient Mariner and Masefield’s Sea-Fever. Could Dylan’s identity as a human being – his sense of self – depend on his relationship with the sea not people?

‘One of poetry’s jobs’, Ruth Padel writes, ‘is to transform real life imaginatively so we understand our lives more pointedly, more fully.’ (Padel, p.18). It is in the close observation of a poem that we feel the thrill of the familiar made strange and the strange, familiar. Poetry helps us to recognise ourselves but with fresh eyes; such recasting of experience changes the way we think and feel about our lives.

Some of the poems which influence us this way, Neil Astley notes, are encountered by accident: ‘That short poem we stared at, read and re-read, on the underground or subway train. Or the one photocopied by a friend, now a personal talisman pinned to the kitchen noticeboard or kept in a wallet’ (Astley, p. 19). Last week I re-encountered a poem which, years ago, I pinned to a noticeboard.

The Sea Boy

Peter went — and nobody there —
Down by the sandy sea,
And he danced a jig, while the moon shone big,
All in his lone danced he;
And the surf splashed over his tippeting toes,
And he sang his riddle-cum-ree,
With hair a-dangling,
Moon a-spangling
The bubbles and froth of the sea.
He danced him to, and he danced him fro,
And he twirled himself about,
And now the starry waves tossed in,
And now the waves washed out;
Bare as an acorn, bare as a nut,
Nose and toes and knee,
Peter the sea-boy danced and pranced,
And sang his riddle-cum-ree.

Walter De La Mare

It isn’t one of De La Mare’s more renowned pieces and reading it today there are things about it I don’t care for. But at a time when I was struggling to come to terms with Dylan’s diagnosis the poem helped me. What it did was offer me an affirming mirror; the boy in the poem, I realised, was like Dylan. Was he autistic? I remember asking myself. I wasn’t sure I’d encountered such a representation of autism in literature before.

I kept the poem on my noticeboard for years. I found Peter both strange and familiar; while I recognised Dylan in him, it made me rethink what I knew. Peter and Dylan, I realised, were sea boys; they had an essential connection to the sea. For me, I think, this was part of the process of seeing Dylan for who he was instead of who I’d expected him to be.

References:

Neil Astley [Ed] (2002) Staying Alive: real poems for unreal times. Bloodaxe
Elizabeth Barrett (1998) ‘Into The Blue’ in Walking On Tiptoe. Staple First Editions
Elizabeth Barrett (2005) ‘Ways of Drowning’ in The Bat Detector. Wrecking Ball Press
Ruth Padel (2002) 52 Ways of Looking At A Poem. Vintage

Images:

Except for the pictures of me with Dylan (which were taken by my ex), the photographs were taken by me  in Brittany, Pembrokeshire, Saltburn, Norfolk, Kent and the English Channel between 1996 and 2013.

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The Frog Prince: autism, poetry and transformation

In a recent post reflecting on the causes of autism I referred to ‘magical thinking’.  By this I mean explanations for disability which aren’t based on scientific rationale or evidence but which acquire narrative status across a cultural group or society. In this post I present four poems which represent a mother’s changing view of autism in the years immediately following diagnosis. The post opens with a poem in which I try to make sense of autism through magical thinking. It then traces critical shifts in my understanding through poems written within the first five years of Dylan’s diagnosis and published in my collection, The Bat Detector.

Responding to my son’s autism through poetry has, I believe, shaped my thinking about disability. Writing a poem is a journey and in the course of it I frequently discover things I wasn’t previously aware of.  Furthermore the act of writing is transformative; I am changed not just by what I have written but through the process of writing itself. In this sense poetry can be considered as epistemology (i.e. a ‘way of knowing’) as well as a form governed by aesthetic and other principles.

Poetry is not, of course, my only way of knowing but it is important to me as a creative approach to thinking about autism. Partly this is because poetry allows me to adopt other voices and perspectives, something I have referred to in a previous post as ‘ethnographic practice’. This can be particularly illuminating as a way of knowing about parenting and disability. In this, of course, it is not unique; researchers also engage with other perspectives. However, poetry also allows us to engage with affective (emotional) material and gives us permission to explore our magical as well as scientific thinking. This post considers the contribution which such an epistemological approach can make to our understanding of autism.

*

In the poem below I consider magical thinking as an explanation for autism through reference to an English folk belief that boys born on a moonless Monday become ‘idiot children’ (as they were known in the 19th century).  Dylan was born by the sea and that landscape makes an appearance in the poem. In the first section I use female mythology of the moon in the mother’s attempt to gauge her fertility by lunar cycles.  In the second section of the  poem I refer to the baby missing its opportunity to be born while the moon is visible in the sky (by the time Dylan put in an appearance it had gone).

The third and fourth sections of the poem refer to a trip to France the year after Dylan was born (see also this post).  Dylan was 15 months old and beginning to show symptoms of autism though we didn’t realise this at the time. I remember joking to my husband about the full moon shining on Dylan’s cot at night and us laughing about Dylan emptying the cupboards in the holiday home and arranging the pots. We had no idea of the significance of this. The day at Carnac (a megalithic site aligned with the moon) became legendary in our family history because of the severity of Dylan’s crying that day and our inability to calm him. In the final section of the poem I reflect that the lives of mother and son are somehow bound up with and controlled by the moon.

Moonstruck

Mother know’d ’twas no moon, for she asked another woman that had an almanac, as she did whenever a boy was born to her, because of the saying, ‘No moon, no man’ which made her afeard every man-child she had…  Thomas Hardy, The Return of the Native

i.  Moon Dates

I timed my eggs by the moon,
knew that when it bellied in the sky
my linings would break to maddening blood.

There must have been fog over the sea that June –
something to obscure that bony annulet from my view,
to wrench from my miscounting on it

an alternative computation.
I converted lunations to trimesters,
waited, patiently, for a March moon.

ii.  No-Moon Child

Waters lapping at toe and fist, cast out on a hawser,
syllables form, echoing in the stabbing dark:
I will be the moonstruck man you never wanted,

 the boy feared beyond imagined daughters.
The sea heaved, spilling spring tide
from a silver moon, shivering a swatch of light

to fill the emptiness, the silence of my due night.
Tick, tick. Its fullness splintered back to blackness
and the month stitched a no-moon Monday to his cry.

iii.   Afeard

As I set the child to sleep that night in a white cot
beneath the eaves of a manor house in France
I shuddered at the sight of moon

pooling full through un-curtained glass,
said that I had read this could send a person mad.
What lunacies beamed from that stark land

into his dreaming no-moon skull?
What fingers of leaching light softly thread
around my shuttered sleep into his exposed head?

iv.   No Man

The megaliths at Carnac point to the moon.
How he cried that day at those lunate bones
divining time from the sky’s light –

gouged the terrible sight of those stone fingers
(their silent, commanding point) from his eyes,
then emptied cupboards of annular things,

spread cups and saucers, pans and bowls in complex order
across the floor, moved his planets inch by inch into a
mooncalf heaven, mapped his constellation from these stars.

v.   Moon Life

And now, wordless, inhabiting a world as strange
and far away as moon he greets its mad latescence
with howling wails and wakefulness,

meets the coldness of its hoary stare through fingers
spread across the glass shredding silver,
minting slivers of no-moon in the sky.

His life and mine still timed by moon he lives
within the darkened days between its blooming,
breathes in space between its lunatic albescence.

*

Moonstruck is an example of magical thinking about autism in that it locates cause in folk mythology and nature. The philosophy of the poem is that the mother and child are victims of something which was inevitable and for which they were marked out by a force unknown and larger than them.  The mother and child have no power, or ‘agency’, in this process; they will not resist what has happened or attempt any change and, in this respect, there is an acceptance of the autism. However, this is not a positive acceptance; the actors are passive onlookers, constructed as victims.

In the following poem, by contrast, the mother-narrator does not accept her child’s autism. Although the representation of her son is loving, autism is depicted as something ‘other’ to him; it is an alien force which has taken over the child’s body and stolen the son from the mother.  There is no acceptance of autism – rather the mother is resistant to the idea that autism could be part of her child.  However, it is magical resistance she engages in rather than scientific challenge; the rescue narrative she dreams for her son is as romantic as the explanation she offers for his autism. A section of the poem is presented below.

Breath

 ii

When my son was less than two years old –
just before his autism was diagnosed
and my whole world fell apart as the child
I thought he was (and would become)
slipped suddenly away from me,
like the death of someone known, familiar –
I had a dream (or vision) in the night.
As I slept, became aware of someone
watching me – woke to see at the entrance
of my attic room, standing at the top of the stairs,
a blond-haired boy regarding me silently,
wise and sad-eyed. I knew it was my son –
though older (maybe seven or eight).
Then a voice – not his, but in my head,
like Aslan’s:  Wait, be patient, it said,
I have to go away but will come back
to you one day.  I sat up straight –
anxious, wanting to hold on,
not let him slip away, be gone.
Then a flicker of breath against
my cheek as he disappeared.

That was years ago:  my son is seven now.
Sometimes I turn – try to catch
him at the top of the attic stairs
looking the way I dreamed he would –
try to conjure from his absent eyes
an answer to the patient watch
I’ve kept for his delivery back.

*

Dylan, seven

In the opening section of Breath (not included here) the mother-narrator reflects on her previous loss of a daughter through stillbirth. Breath, then, becomes a poem of sudden loss in which children are stolen away; these losses take place overnight when there is permeability between the living and spirit worlds and souls can cross over. In this sense the loss of the son to autism is constructed as an ‘othering’. The absent-eyed child is an imposter who has taken the place of the lost (non-autistic) child who the mother-narrator prefers.  The non-autistic child is constructed as superior not just to the imposter but to the mother; in this poem, it is the lost child who takes the explanatory narrative (‘I have to go away’) and who is charged with responsibility for managing his own return. The mother simply has to wait. This abnegation of maternal responsibility is part of a construction of the mother as passive victim who has to endure magical fate (Moonstruck) and mystical crime (Breath).

Dylan in his helmet

In the next poem, instead of magical thinking the mother embraces scientific explanation. The poem uses the language and vocabulary of genetics. Through this, the mother  begins to construct herself as part of her son’s autism. This is not a positive involvement however – rather she fears her  potential responsibility for the wider family and future generations.  The poem explores fertility and reproduction and I relished the opportunity to write about menstruation, ovaries and eggs. However in other respects the poem was difficult for me to write. Reference is made to the mother’s new daughter as well as to the daughter who died; this living daughter is seen as the only ‘normal’ child, with both the dead daughter and the autistic son described as carriers of genetic ‘abnormality’. In this, then,  the mother continues to privilege normalcy over diversity.

I wanted to try and capture the reality of being a mother to an autistic toddler – the days when it’s a struggle to keep going until the release of sleep. While I was writing the poem I forced myself to be very detached about Dylan. At the time he had a policeman’s helmet (not a real one) which he insisted on wearing constantly and which makes an appearance in the poem. I don’t know who bought it for Dylan but I’m pretty sure I wouldn’t have. I came to really dislike that helmet.

Monster

The morning brings stench of broken linings,
blood like a butcher’s shop, thick and liver-brown.
Menstruating again – shedding another
of the last surviving eggs
from the store I was born with.

A geneticist assured me once it was all
a bit of a lottery; told me that in every
woman’s cargo of eggs there are some
that are bad – chance statistics of
abnormality or spontaneous abortion.

One of my long-shot eggs grew hardly
human. Today he is a monster on a train,
wearing a helmet. He emits strange shrieks,
makes bizarre grimaces with his face.
Except for providing food

I cannot connect with him today.
This defect cannot be detected
or tracked back, with certainty,
to the egg. But I know the possibilities –
the endless varieties of bad ovum.

Recall how, years ago, the geneticist
talked me through my still-born
daughter’s post-mortem.  The shock of it:
sheer extent of things gone wrong –
impossible – inside her.

I’d held her: committed her to memory,
through unstoppable tears.  She’s beautiful,
she’s so perfect I’d said. I remember
how the doctor had touched her left foot,
showed me the odd splay of her toes –

said it sometimes indicated things gone wrong.
Later, the confirmation of ugly words:
fixed flexion deformities, syndactyly,
webbing, micrognathia.  It was the egg,
the geneticist said, that failed to divide:

an extra set of chromosomes –
Triploidy Karyotype XXX.
The only thing normal
reported about her: female genitalia
and reproductive system intact.

Now I have another daughter: she is
my bright and bouncing perfect egg.
Today, mourning my losses, feeling
ache and cramp of blood (the odds
on my eggs being good lengthening)

I fear the gift I have bequeathed:
wonder what the clutch of eggs
inside her holds, whether time-bombs
are already ticking, waiting to release
their hair-sprung triggers and go off.

*

Although the language of the post-mortem report is monstrous the mother finds her daughter ‘beautiful’ and ‘perfect’.  While she cannot connect with the monster on a train we are (twice) told that this is her experience ‘today’; the implication is that, as with ‘ordinary’ parenting, there are good days too.  Here, then, there are chinks of light: the mother finds the disabled child beautiful and claims disability as part of her life history.

The final poem in this post, Frog Prince, captures further change in the mother’s views as the narrator reflects back on herself over a three year period. The trigger for these reflections is the appearance of a frog in the garden. The poem recounts a real incident which offered a way for me to address perceptions of disability; through the narrative of the tadpoles I explore feelings of denial, responsibility and guilt, as well as raising the issue of the ‘invisibility’ of autism and its emotional impact on parents.  By the end of the poem the mother realises she has moved beyond acceptance of autism to celebration of difference: ‘I no longer wish for transformation’, she reflects, ‘would not plant the kiss’.

Frog Prince

A frog visited me this morning –
sat still as brown stone in the rockery,
rain falling on her pointed head.
I assumed, at first, this frog was there by chance,
her appearance not to do with me.
But she bulked big as a fist until I had to admit
it was probably her third summer,
could date her hatching to the year we’d stashed
a greedy harvest upon our bathroom windowsill.

As the spawn crammed in the plastic boxes, jars and pots
grew inky dense, we’d looked on aghast
at the wriggle and bud of tadpoles
sprouting extra limbs, additional heads –
stood by while some grew monstrously
as they fed on the weakened, selected the grotesque.
Witness and accused in this fishy metamorphosis
I’d closed the bathroom door on the alchemy,
tried to ignore my part in it.

But then, the night the comet came,
I’d rushed to wish into transfigured sky  –
one more try for my miracle,
for something to unravel and re-thread
the tangled wires in my son’s head,
for a word, a gesture, a touch of human love
to issue from his perfect lips, his gilded arms.
But tadpole-skulled, head full of frogs,
I’d  imagined, instead, this simplicity –

that my son had grown two heads, no legs,
been eyeless, deaf – that some strange growth,
or absence, had marked him out, made difference clear.
And in this horror I’d turned them out – stumbled in
to the stagger and slosh of stairs, the weeping garden,
stood beneath a tail of light, frogs falling from me,
their mutant bodies sliding through guilty hands.
Next day I watched birds come at dawn,
their derrick heads bobbing, clean-picking the lawn.

The escaped frog that visited today
brought me in a leap of time to realise
that, since her freedom, things were changed.
The difference this – that I no longer wish
for transformation, would not plant the kiss.

*

Looking back at these four poems years later I can detect the shifts in thinking which I perhaps wasn’t conscious of at the time but which poetry helped me to explore. Mapping models of thinking about disability onto these poems, you could say that the mother moves from ‘primitive’  beliefs about autism (Moonstruck and Breath) through a Medical Model approach (Monster) to a position more akin to that of Neurodiversity (Frog Prince). While parents may not find it helpful, in the aftermath of diagnosis, to think in terms of philosophical models, applying such thinking retrospectively can be illuminating. The practice of writing creates a reflective space which allows us to record our journey through difficult terrain, thus supporting a process of discovery and transformation.

Reference:

Elizabeth Barrett (2005) The Bat Detector, Wrecking Ball Press
Thomas Hardy (1878) The Return of the Native, Penguin Books

Source of images of frog, tadpoles and moon unknown but appreciated.