Learning Through Dialogue: reflections on blogging (ii)

Photo075This is the second of a two-part post reflecting on some of the things I have learned through Living with Autism. In part one I suggested that the blog has been invaluable in providing me with a space to reflect on key issues in relation to Dylan’s care; it has encouraged me to think more deeply about a range of topics and to pay closer attention to Dylan than I might otherwise have done.

For one post, for example, I kept a log of Dylan’s vocalisations in order to illustrate his engagement with speech and language, something I doubt would have occurred to me without the blog. I learned a lot from this activity, and from other observations made to inform blog posts, and Dylan and I have benefitted  from this process. I also noted, in my last post, that the blog has been helpful in the sense that writing can be transformative; while drafting posts I found new ways of thinking about familiar issues and emerged from the process of writing having learned something about myself and Dylan.

This growth and development does not take place in the writing alone however; it is through dialogue with others that some of the most significant and creative learning ocurred. One post, for example, reports what happened when I tried an approach with Dylan suggested in a comment on my blog. I have previously noted (in a post about autism and divorce) that what single parents of autistic children lack is space and dialogue; these two resources, I suggested, are invaluable if carers are to feel nourished and supported. As well as providing me with a sense of space, Living with Autism has been crucial in providing such dialogue. I am immensely grateful for the ideas, musings, suggestions, examples and encouragement received from others, and for the friendship and support Dylan and I have found here. The rest of this post celebrates the reader’s role by sharing what I have learned from (and about) an audience.

Being careful: reflecting through Chimamanda

untitledI’ve just finished reading Chimamanda Ngozi Adichie’s superb novel Americanah (Fourth Estate, 2014). The main character, Ifemelu, is a blogger; when she moves to the US from Nigeria she sets up a WordPress site called Raceteenth or Curious Observations by a Non-American Black on the Subject of Blackness in America (she later changes the tag line to Various Observations About American Blacks (Those Formerly Known as Negroes) by a Non-American Black). Later, returning to live in Nigeria, she sets up a new blog, The Small Redemptions of Lagos.

Ifemelu’s reflections on blogging punctuate Adichie’s novel and extracts from it are used both to carry the plot and to illustrate key themes. As well as being an inspired narrative device the material makes fascinating reading for anyone who blogs (especially chapter 33 which is devoted to the subject). We hear, for example, that Ifemelu checked her blog ‘like a child eagerly tearing open a present she is not sure she wants’ and that she received mail from people ‘asking for a drink, telling her she was a racist, and giving her ideas to blog about. ‘ (p. 303) When Ifemelu’s blog starts to generate interest among educators and business leaders and she is invited to speak at diversity workshops, to take phone calls she: ‘wore her most serious pair of trousers, her most muted shade of lipstick, and she spoke sitting upright at her desk, legs crossed, her voice measured and sure’. (p. 304)

Yet, we are told, ‘a part of her always stiffened with apprehension’. Initially this is because Ifemelu fears she will be exposed as a fraud – that she is no expert on ‘race’ and has no particular credentials to speak publically on the topic. She prepares carefully for her first engagement and feels deflated when her talk receives a lukewarm reception. That evening she received an email:

YOUR TALK WAS BALONEY. YOU ARE A RACIST. YOU SHOULD BE GRATEFUL WE LET YOU INTO THIS COUNTRY. (p.305)

untitledThe email is a revelation to Ifemelu who subsequently realises that the people who extend invitations to her to speak at events want to ‘feel good about themselves’ rather than to be inspired to enact change: ‘They did not want the content of her ideas; they merely wanted the gesture of her presence’. These people, Ifemelu came to understand, were not the same people as those who read her blog. These different audiences were open to different conversations. So, for example, Ifemelu tells her all-white audience at a diversity talk ‘America has made great progress for which we should be very proud’ whereas on her blog she writes: Racism should never have happened and so you don’t get a cookie for reducing it. (p. 305).

Ifemelu’s blog becomes so successful that in time she is able to hire an assistant to delete inappropriate comments on her blog ‘almost as soon as they were posted’. Living with Autism clearly does not occupy the same space as the fictitious Observations by a Non-American Black. While Ifemelu’s blog attracts thousands of readers and comments, this one is much more modest of aim and scope. I’m interested, however, in Adichie’s observations about blogging and particularly in the possibility that a blog audience may be more open to radical thinking than a non-virtual audience.

At the end of my last post I referred to an observation, by one of my colleagues, that the tone of my posts was ‘careful’. I suspect this was partly from my concern to write clearly but mostly because I was anxious. ‘Autism’ is a slippery subject. Nothing about it is generalisable. Everything can be qualified. The concept is contested. The language is different (and differently contested) in different countries and contexts. The ethical issues are complex, particularly when they involve individuals with learning disability and without speech. There are competing philosophical models and oppositional positions on policy and provision. The concerns of autistic people, professionals and parents are different. And (as with everything) there are agendas, trends, fads, heroes and villains. Like ‘race’ it is a topic which challenges and which demands our emotional as well as intellectual engagement.

When I started blogging I realised (from reading other blogs) that there is as much conflict as harmony in the online community and I trod carefully. As well as wanting to respect divergent views, and to embrace professional and personal perspectives, it was important to me that Living with Autism created a space which was accessible to people without a connection to autism. Juggling these different constituencies is perhaps one explanation for the caution in my voice.

untitledIn Adichie’s novel Ifemelu occupies an increasingly courageous space as she becomes more comfortable with her role as a ‘provocative race blogger’. While Living with Autism may not have courted this, I’d like to think that at least some of my posts challenge established ideas. Certainly, as time went on, I felt braver about discussing sensitive topics; recently, for example, I published a post on carer suicide/killing, a subject which has provoked fierce debate and which I would once have been too anxious to tackle. In the event I need not have feared; the ‘careful’ voice that my colleague identified has been equally true of the dialogue on Living with Autism. I’m pleased that the comments on this site, while not always in agreement, have been respectful and non-inflammatory; for this, Dear Reader, I thank you.

Namastē and Olá

wikiindiaBecause Living with Autism has not been as ambitious in scope I have not had to deal with the fear triggered in Ifemelu by the readers of Observations by a Non-American Black:

The blog had unveiled itself and shed its milk teeth; by turns, it surprised her, pleased her, left her behind. Its readers increased, by the thousands from all over the world, so quickly that she resisted checking the stats, reluctant to know how many new people had clicked to read her that day, because it frightened her. (p. 303)

wiki brazilAs I find statistics fascinating I am not capable of exercising Ifemelu’s restraint. Besides, the WordPress data is rich: it is not only possible to identify the popularity of posts and track waves of interest, visitors to a blog can be mapped by location. Living with Autism might have been viewed only five times in Ifemelu’s native Nigeria but I am surprised that it has been viewed at all in some of the 122 countries listed in my blog stats. I love the roll call of Myanmar and Mongolia (1 each), Curaçao and Nepal (2 each), Kazakhstan (3), Costa Rica (4), Georgia (5) and Mauritius (6).

It isn’t particularly surprising that the majority of readers come from five English-speaking nations (UK, US, Canada, Australia and Ireland) but I could not have predicted the position of some countries on the leader board: India, for example, is in 6th position with 287 views and Brazil is not far behind in 7th  (220). I realise these viewings could be from multiple readers or from a few loyal followers; whoever you are, Namastē and Olá.

Making sense

wikiusThere are other, more complex, statistical analyses which can be done and, indeed, once a year WordPress sends a ‘review’ to bloggers, offering headline statements about their blog’s performance. At the end of my first year of blogging, two things caught my eye. Firstly, the majority of readers of Living with Autism were located in the United States. I saw annual reviews of other UK bloggers (on different topics) and noted with interest that their readers were overwhelmingly British. This could be linked to focus; certainly there seems to be more interest in autism in the US than in the UK (these statistics have recently changed and I now have slightly more British than American readers).

wikiukThe other headline finding from the WordPress review of my blog was that my posts had ‘staying power’. I should ‘consider revisiting some of the topics I’d already written about’, the review advised, as my historic posts continued to receive relatively high numbers of readers. This advice didn’t seem very meaningful as all my posts are on the same broad topic: Dylan and my attempt to understand how best to care for him. It occurred to me recently, however, that what the statistics might do is indicate specific areas of concern within the autism community.

While all blogs have some loyal followers, many readers arrive at a site via an internet search on a topic of interest to them. These searches must sometimes be very disappointing; when I wrote a post called He’s Not My Toy Boy, for example, Living with Autism received a number of hits from people who were probably hoping to find one. Some of my posts, however, are found by people who seem to be searching for exactly the topic I have written about.

Reader Concerns

tears5A post I wrote about Dylan not producing ‘real tears’ (Why Doesn’t My Autistic Son Cry Tears?), for example, receives unwavering attention. Every week it is at or near the top of the week’s viewings and it stands third in the overall rankings. What is distinctive about this post, and what intrigues me about it, is the way it has made quiet progress up the statistics page, overtaking even those posts which received a flurry of attention in the aftermath of being selected by the WordPress editors to be freshly pressed.

The post is actually one of my least favourite pieces of writing; it is short and inchoate, offering an observation but ultimately (I think) unsatisfactory. It is my third most popular post only because people keep finding it when they type ‘why doesn’t my autistic child cry’? (or something similar) into Google. If I were an autism researcher I would definitely be asking questions: if you have such a background, please note that significant numbers of parents claim their autistic children do not cry! Other common interests and concerns (if numbers of viewings can be considered an indicator) include the difficulties of chronological age in relation to autism (my most popular post by a long way); understanding autism through poetry (My Trees Have Grown Hair and The Frog Prince); and the gender implications of autism.

wildlife-imaging.co.ukTwo of these posts were Fresh Pressed so it is not surprising that they are among my most-viewed posts. What I do find surprising, however, is that (with the exception of my post about crying) my top five posts are among the most demanding of those I have written: they are long; some draw heavily on (and include) poetry; and they engage with sociological or philosophical ideas. The fact that these are my most popular posts reminds me to trust the reader; visitors to this blog have clearly been prepared to read longer posts, to engage with difficult ideas and to read poetry. These data also remind me of Ifemelu’s reflection that the readers of her blog were more prepared to be challenged than were the audience at her workshops; I will not assume in future, that virtual dialogue must by its nature (or format) be less challenging.

My Preferences

The readers’ favourite posts are not the same as my own preferences. The posts which I have most enjoyed writing, or which I feel most satisfied by, tend to be those which have made me think very hard (this one, for example, which tries to apply a scientific paper to Dylan’s life history); which I have needed to be courageous to write (such as this one about alcohol and autism); or which have been demanding in terms of format (usually because I incorporated poetry or fiction as in this one about the sea and this one about air travel). I have also enjoyed reviewing films and books  – though, again, my favourites are not the same as the readers’.

caul 002As well as identifying autism and ‘crying’ as a likely subject for further exploration, I have suggested other potential research ideas in some of my blog posts. In this post, for example, I hypothesise that Dylan’s use of the camera suggests lip gaze may be a more appropriate focus than eye gaze when considering the communication of ‘non-verbal’ children and adults, while in this post I suggest that the letters of the alphabet may be ‘read’ by visual learners as objects rather than as symbols. I have also tried to promote lines of enquiry into the role of the senses in memory and the role of art in the education. These, however, have not generated any particular interest 🙂

As well as not being beguiled by potential research questions or hypotheses, the data suggest that readers are less interested in ‘diary pieces’ (recording small incidents in my week) and posts which focus on my life rather than on Dylan’s or on religion/spirituality. These least-viewed posts often (though not always) have ‘less to say’ (i.e. they lack a revelation or transforming moment); like Ifemelu’s readers, visitors to this blog seem to have appreciated discussion of the ‘big ideas’. It seems to be the pieces with a tentative and more meditative voice – often those which incorporate poetic texts – that have been particularly popular with readers. While this doesn’t mean readers demand to be ‘uplifted’ or can’t ‘do dark’, there is an appreciation, I think, of the beauty and the celebration – what I think of as the ‘poetry of autism’.

Not learning from statistics

IMG_0029 (2)My purpose in setting up this blog was to share my experience of attempting to secure appropriate provision for Dylan after he left school. When he finally took up a residential place this summer, that journey came to an end and a new one began. As I noted in a previous post, the initial weeks of Dylan’s placement have felt like a ‘phoney transition’ in that I have been able to see him during the week as well as at weekends. Furthermore, as the majority of Dylan’s things are still with me, rather than at his new home, the full implications of the move have not yet sunk in for either of us.

In a few days time, however, it will be two months since Dylan’s placement began. I have returned to work after the summer break and a new academic year is about to start; I won’t be able to continue the transition activities which I have been able to prioritise during the first eight weeks of Dylan’s placement. The phoney time is over and real time is about to begin.

Rather than close this blog down immediately, I plan to keep a daily diary recording the first 100 days of living without autism. I imagine the pieces will be short and ephemeral and if they contain any ‘big ideas’ at all they will be stumbled upon. I noted earlier that the ‘diary type’ pieces on Living with Autism have been among my least-viewed posts which suggests that the next phase of this blog is unlikely to be popular 🙂 You could be forgiven for asking if I had learned anything at all from the WordPress statistics? Well, yes – but reader numbers have always been a bonus rather than an aspiration and I imagine this will be even more the case in future.

My aim in recording the first 100 days is to observe the impact of separation on me and on my relationship with Dylan. I hope that this will be as helpful to us in learning to live without each other as it was in helping us to live our lives together. Whether you are staying or leaving, thank you for accompanying us this far.

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Reference:
Adichie, C.A. (2014) Americanah. Fourth Estate

Learning By Writing: reflections on blogging (i)

booksIt’s two years – virtually to the day – since I made my first blog post. I had no idea what I was doing that day: I simply typed into my barely-developed WordPress site and hit publish. The piece was different to my subsequent posts in that I didn’t write it offline, there were no drafts, I didn’t include images and it was relatively short. It was also different in terms of ‘voice’: more meditative and detached. Nonetheless, it has consistently been near the top of my blog post leader board and currently stands as my 6th most popular post (out of 82). This is not due just to longevity; there is no direct relationship between the number of views a post has received and when it was posted. My advice to anyone reading this who is hesitating about making that first post? Just do it!

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The focus and style of my first post puzzle me as my reason for setting up the blog had been more campaigning than musing. It was my frustration at the lack of provision for autistic adults with severe learning disabilities in my area that led to Living with Autism. My son had left his autism-specialist school that summer but had not been allocated any continuing provision. I was concerned about Dylan, who needed the structure and routine of a specialist environment, but was also anxious about how I was going to return to work. When a legal action against my local authority uncovered failures and omissions in Dylan’s care, my instinct was to share what I had discovered. My blog would be worthwhile, I told myself, if it helped other parents to get information I had not had access to.

If someone had told me, when I made that first post, that it would be two years before Dylan was allocated an appropriate placement I would have said I could not manage. And if I had known that I would have to learn how to support Dylan through some difficult ‘challenging behaviour’ I would have doubted my capacity to cope. If it had been explained to me, then, that in order to keep Dylan at home through these darkest of days I would have to make radical changes to my working life, I would have hesitated. And if I had been aware that surviving these years would come at high cost (to my poetry, my relationships and my health) I would have wondered whether I had the resources.

Perhaps it’s just as well we don’t know how the road ahead looks and what it will require of us. Most parents, when facing a challenging situation, give what is needed – and sometimes it is through such challenge that we discover just how deep our resources are and how much we are able to give. But I don’t think that we find this in ourselves alone; most of us also draw strength from some external force. For many of us, this is friends and family. For some, it is faith. For others, work or an interest or hobby. All of these have been important to me. I want to use this post, however, to reflect on the positive contribution of something I did not anticipate: blogging.

Learning through writing

batdetectorFor me, the most interesting writing is transforming; if I don’t come out of the process seeing the world differently, I’m not really interested in finishing it. This is true of any piece of writing, whether it is a poem, a short story or an academic article –  so perhaps I shouldn’t be so surprised that writing posts for this blog turned out to be a vehicle for learning and development.

If I want to be changed by what I write, I cannot be too in control of it. While I always have a defined topic in mind, and some key points or examples I want to communicate or explore, I try to leave enough space for a piece to breathe by itself once it has lungs. It can feel very scary when a piece heads off down a branch line, but I know that these diversions can lead to unexpected blessings as well as to dead ends. So I never plan a piece of writing (a poem or article or blog post) in too much detail or to the end because I don’t know, until I’ve written it, what I know. This might sound strange to people who don’t connect writing with thinking but for me the two processes seem to be inseparable; I simply don’t understand something until I’ve written about it.

I think for me this is to do with being a visual learner. I need to see how things connect with each other so I love moving sections of text around in a piece of writing to see if I can find new and surprising links. The connections between sections are important to me; I think this is about finding the progression and coherence in ideas. Perhaps my main preoccupation, however, is pattern and paradox; a concern with things that are similar and things that are different seems to underpin most of my writing. I suspect that it is through this re-organisation of material that (if I’m lucky) I happen across new connections and alternative ways of knowing.

So, at its best, writing blog posts has been a process of discovery; some of the pieces I have written have genuinely changed the way I think. This has particularly been the case for posts which focus on knotty abstract concepts, such as ‘independence’ or ‘voice’, and for sensitive topics, such as suicide and ‘challenging behaviour’ , but has also been so for posts with a more applied focus. Writing about the early interventions I made with Dylan when he was first diagnosed, for example, enabled me to understand the meaning and significance of the ‘treatments’ in a way I doubt I would have grasped had I not explored them through writing.

Writing is increasingly used therapeutically with professionals, particularly in health and allied sectors, and for several years now I have used it myself with staff and students in education in order to explore issues in personal and professional development. Keeping this blog has reminded me of the power of writing as a tool for exploring and transforming our knowledge, understanding and beliefs. Perhaps there should be more opportunities for parents and professionals to explore their experiences of autism through writing in structured and supported settings?

Making space

The other way in which keeping a blog has been helpful is in the space it creates for thinking and reflection. It’s a bit like having time in the therapist’s chair; setting myself a target of one post a week encouraged me to prioritise and make room for this. I would choose a topic from the scribbled list on my desk and spend half the week thinking about it (in whatever space I was in) before making the space to sit down and see where it would lead. Sometimes the posts would be written swiftly but if it were a thorny topic, or I found myself up a branch line, it could take longer than planned. Occasionally something I hadn’t expected came bowling in, elbowing its way to the top of the list, and sometimes (by contrast) the magic didn’t happen: there was no flash of pattern or paradox.

One thing I resolved when I started the blog was that I wouldn’t keep it at Dylan’s expense; on the ethics page of this site I identify a range of ways in which it could enrich Dylan’s life and a protocol to protect him from harm. One issue I don’t refer to on the ethics page, however, is the practical challenge of making space. When I set the blog up I told myself that it would be daft to be tapping away at a keyboard, writing about caring for Dylan, instead of actually caring for him. I had to find a space to blog which took nothing away from the time I spent with Dylan. How, as a single parent with a full time job, did I manage this? The short answer is that I sacrificed my diary and my poems.

The early morning hour before Dylan wakes, which I had previously used for writing, became ‘blog time’. Consequently, I haven’t done much with the manuscript of poems I was working on when I started this blog. In fact I have been so little involved in the world of my poems that it has been hard to think of myself as a poet at all some days. This would make me sad except that a) I’m not scared of fallow periods b) I have continued to edit poems that were already written c) the poems worth writing will still get written (albeit differently) and d) even if I never write another poem it was worth it.

The other sacrifice I made was to reduce the amount of time I spent writing a journal; a daily diarist from the age of 14, in the last two years I have allowed myself only one entry a week. Could I not have made the discoveries I refer to above through the process of writing in a journal? I doubt it. In fact I suspect that I have rarely discovered something new through a journal entry . I think this might be because I don’t pay the same attention to structure and organisation in a diary; as it’s handwritten, text does not get moved around and re-organised. I am therefore less likely to unearth pattern and paradox. I am also less concerned with logic and evidence in a diary entry and am far more indulgent and much less rigorous. Perhaps it is the one form of writing where I don’t expect transformation?

Being Provisional

dartofgreenAs I begin to think about writing poetry again I ask myself if blogging will have spoiled my poems the way squash once ruined my tennis (or so I claimed in the summer of 1986). What, I wonder, is the impact of one form on another? I am convinced that we take it into our deep subconscious; I know by instinct, for example, when I have written a sonnet-length piece.

When I started blogging I realised my posts were longer than most. I also realised, however, that I was incapable of writing to the more usual length of 1000 words and I have to work to limit myself to 2000; my natural ‘prose breath’ is, I suspect, closer to 4000 words. One thing I have enjoyed about the form, however, is its provisional nature. The WordPress facilities allow me to go on editing a piece even after it has been published; for me (for whom nothing is ever finished and everything can only ever be provisional) this is a marvellous format. I am an inveterate drafter and editor of my own work. Blogging allows me to go on polishing and I love it for this.

I have a reservation about this post-publication editing facility, however. If someone has ‘liked’ my post and I then edit it, how do I know they would still approve? I comfort myself (and, I hope, you) by limiting my edits to style not substance. If I change my mind about something as a result of comments from readers then I add a postscript or correct myself through the comment trail or in a subsequent post. Reader interaction with a blog is of course a central feature of the medium, particularly in relation to the capacity for learning and change. In the early days of my blog, when I had posted only a handful of pieces, a colleague suggested that my voice sounded ‘careful’. I replied that I checked my claims, of course, and was careful to make clear that my observations were based only on a single story. I realised later, however, that she hadn’t used ‘careful’ in the sense of ‘rigorous’; my colleague had meant I was holding back. Perhaps as well as being excited by the idea of a conversation with an international audience, I was nervous about the interactive format? My next post will reflect on this and on what I have learned through dialogue.

Dylan’s Pictures: stunned into words

barnes thesundaytimes.co.ukIn 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.

june 15 023 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

june 15 004One 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?

june 15 006Some 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

june 15 014Dylan 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.

june 15 017Gauguin’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

june 15 005Like 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.

june 15 020Dylan’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

june 15 003Dylan 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?

Munch 003In 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.

*

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.

*

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 barnes thesundaytimes.co.ukpaintings, 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.

perry tes.co.ukGrayson 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

june 15 024In 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

june 15 023Alain 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.

*

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.

 

Why Friendly Can Be Better Than Relaxed: autism, accessibility and the arts

2014-02-22 14.59.39I’ve been wanting to write about accessibility for a while but have hesitated because ‘Tinc’ (who blogs at Tincture of Museum) already does it brilliantly. Tinc is well-qualified to do so; having resigned a career as a librarian to spend more time with her family (which includes a daughter with Aspergers) she now supports a variety of museums as a volunteer and blogger.

Tinc focuses on a range of issues of interest to museologists but her personal experience of autism means that she has particular insight into the ways in which museums can improve accessibility for visitors who are autistic (see for example her post about the London Science Museum). After Tinc generously tagged me in a round-up of blogs on museums and autism I thought I’d offer some reflections on Dylan’s experience of accessing the arts. In this piece I explore the terms ‘autism friendly’, ‘inclusive’ and ‘relaxed’ in relation to a range of artforms and organisations. There doesn’t seem to be agreement, within or across sectors, about the various terms used by organisations so the sense I make of these definitions is my own, based on personal experience. I make only brief reference to museums, however, and refer anyone with a particular interest in that sector to Tinc 🙂

Definitions

2014-03-23 14.24.44If I encounter the term ‘Autism-Friendly’ I assume adjustments have been made to a venue or event with specific reference to the needs of autistic visitors. Such adjustments could include the selection of material; trained staff; adaptations to the environment to reduce sensory stimuli; changes to the timing and sequencing of an event; production of autism-specific resources; or ring-fencing of places to the autism community.

An event advertised as ‘Inclusive’ may also include adjustments to the environment and scheduling of an event; while these are often helpful in relation to autism, such events are not developed specifically for autistic visitors but aim to improve accessibility for all disabled visitors. I’ve encountered the term ‘Relaxed’, meanwhile, in relation to live theatre performance. My experience was that the event  did not incorporate significant adjustments to the environment. At relaxed performances, however, the audience is not required to adhere to the usual conventions (for example being silent) and audience participation is encouraged. I suggest that not only are such events not autism-specific, some of their features may be challenging for some people with ASC.

Managing without adjustments: libraries and art galleries

2014-03-08 14.38.38Of course not everyone who is autistic requires adjustments in order to access ‘the arts’. Even with severe autism and a language and learning disability, Dylan manages perfectly well without adaptations in some settings. Libraries, for example, are fine; in fact they are one of Dylan’s favourite places and a regular fixture on his weekly schedule. It might be more of an issue if Dylan needed to access the adult section of a library but the material he is interested in is located in the children’s section which tends to be less formal.That’s not to say issues don’t arise: he has had to learn not to remove library labels from books and to accept that an item he wants might have been borrowed by another library-user. These are reasonable lessons, however, rather than accessibility issues.

2014-03-08 14.37.59Because Dylan doesn’t read or write his interest in books is based on his love of illustration. Dylan’s strong orientation to the visual world means that art galleries are also of interest to him and, as with libraries, he manages these without adjustment. Although Dylan negotiates the space idiosyncratically, no adaptations are needed. Dylan has had to learn not to touch and to accept that if other people are looking then he will have to wait; equally he knows that if he stands too long before a painting I will encourage him to move on. But, again, these are reasonable things for Dylan to learn. I don’t think I’ve ever seen an art gallery advertise ‘inclusive’ viewings and I don’t think this is something Dylan needs. I do sometimes wish, however, that separate sessions could be scheduled for those who look askance at Dylan for being vocal or for moving quick, quick, slow.

Understanding adjustments: managing museums

Although, as the blogs showcased by Tinc illustrate, some museums have become accessibility trailblazers, Dylan has so far managed without adjustments; this is not because he wouldn’t benefit from autism-friendly sessions but because I haven’t as yet been able to visit (these are mostly offered by the London museums). Although there are aspects of museums which Dylan finds challenging he copes pretty well. We make regular visits to local museums and, as with art galleries, Dylan has favourite exhibits. In the Millennium Galleries it is ‘cutlery dragon’ and at Weston Park Museum it’s the Polar Bear, the leaf-cutting ant colony and some local landscapes and portraits. Dylan often performs ritual greetings with his favourite exhibits; in front of Bear’s display cabinet, for example, he repeatedly charges a nearby whale harpoon.

The above examples illustrate Dylan’s preference for natural history and art. He also enjoys machines, particularly those involving steam, so local museums linked to our area’s industrial history are popular. Dylan tends to have less interest in social history unless there is something about the presentation which captures his attention; he loves the carriage ride around a Viking village at Yorvik Museum, I suspect, because the reconstruction feels like a movie set.

What Dylan needs when he visits museums is understanding as much as adjustment; at Yorvik for example it takes him a little while to get in and out of the carriage and he needs help to turn off the audio information. Ideally, we need to ride in our own carriage (and have been able to except for at very busy times). Dylan usually gets this sort of understanding in bucket loads from staff at museums. Although members of the public are also usually understanding, if Dylan experiences an obstacle it does tend to involve other visitors. Although this is sometimes because Dylan’s presence unsettles a member of the public, it is more often the other way around. Perhaps one of the key benefits of autism-friendly initiatives is that they offer autistic visitors a bit of time with the museum to themselves.

Inclusive cinema

thechildrensmediaconferenceSometimes an adjusted setting can be a stepping stone to a regular setting and I have used inclusive cinema screenings for this purpose with great success. Dylan has been passionate about film since he was young but because his habit is to watch alone the cinema did not appear to be an option; after various attempts to take Dylan ended in failure I gave up. The introduction of monthly ‘inclusive screenings’ at a local cinema, however, offered me the confidence to try again.

The first inclusive film we attended was one of the Harry Potter films. Although there were still some challenges for Dylan, leaving the lights on low (rather than viewing in complete darkness) and lowering the sound were adjustments which seemed to make him more comfortable. It helped that it was a film which Dylan knew  – and it certainly helped me to know that people would understand if we needed to leave. But, I told myself, I might not feel the need to leave if Dylan was noisy as he wouldn’t, presumably, be the only one. When he stayed in the auditorium until the end of the film that day it felt like my best birthday ever (it was my 50th).

Canal day 006Having spent the last four years taking Dylan to inclusive cinema he is now able to access regular screenings. The first time I tried this it was motivated by self-interest: The Borrowers had just been released and I wanted to see it. It was half term and the cinema was full with school children. I’d managed to get Dylan’s preferred row and seat (right hand side, four from the back, far aisle) but I felt hemmed in and anxious as the trailers started. Luckily it was a Studio Ghibli production which I think helped Dylan through an unfamiliar film in darkness with surround sound and chattering children. At inclusive cinema screenings I had been modelling appropriate behaviour, encouraging sit and ‘sshussh’. It turned out I had coached Dylan well; he pointed to a noisy child seated nearby and said ‘shouting! sshussh!’.

Since then we have been frequent visitors at a range of cinemas. Some trips have been more successful than others and I don’t ever quite relax; I have to stay alert to Dylan’s impact on others as well as to how comfortable he is. One of the things Dylan always does at the end of a film is run to the front and sprint from side to side of the auditorium repeatedly. It is a stim, triggered by the rolling credits which he loves (at home, with no space to run, he flaps instead). At busy regular screenings – especially when there are small children – I have to manage the timing of Dylan’s run to the front  (if people haven’t noticed there is anything different about us, this blows our cover). And because this can be quite stressful, we still go to (and prefer) inclusive cinema.

Relaxed Theatre

Stratford 038One experience which has not been a stepping stone to mainstream events was a ‘relaxed performance’ of Peter Pan at the RSC in Stratford-Upon-Avon last year. Having had some positive experiences of accessibility initiatives an advert for the production caught my eye. Dylan is a serious fan of Peter Pan and it seemed a wonderful opportunity. I loved the idea of being able to take Dylan to the RSC in the same way that I might take my daughter; this was my dream of inclusion.

So, with friends, I booked tickets for a  matinee performance. Dylan and Ella coped with the production but it was challenging for Dylan. The performance did not appear to have been significantly adjusted in terms of, for example, lighting or sound and there weren’t any obvious time-out areas. The play was also heavily language-based and only loosely-based on the original; there is, of course, nothing wrong with this but I hadn’t grasped from the available information that it wouldn’t be suitable for Dylan.

The audience was also challenging for Dylan; the event had attracted school parties and the theatre was buzzing with chattering children. As the performance had a relaxed approach to audience noise this low level hum continued. Dylan tends to vocalise so a relaxed approach to noise was ‘a good thing’ in a way; however, he finds lots of language distressing so spent much of the time with his arm clamped over his head, stoppering his ears. For some autistic theatre-goers this environment would perhaps be tolerable but for Dylan it was possibly worse than a non-relaxed performance. Also challenging was a ‘Question and Answer’ session immediately following the close of the play. Not only had I been unaware this was scheduled, as there was no break between the curtain call and questions we found ourselves trapped in the theatre in what was for Dylan an inappropriate session.

Friendly West End

The only challenge at an autism-friendly production of The Lion King at The Lyceum in London’s West End the previous year had been that it came to an end at all. This was Dylan’s first experience of a live performance and it set the standard. As I recall, the theatre had worked with the National Autistic Society to develop the performance and certainly for me one of the key features of the event was the way in which the theatre staff appeared to be autism-aware.

Before the performance, for example, I witnessed what could have been a difficult incident in the sweet kiosk handled with sensitivity by a theatre employee. At the interval I was in a long queue for refreshments with Dylan, fretting a little about whether he’d understand that we would be returning to our seats with our ice-creams (not familiar with the interval concept he had insisted on gathering up our bags and coats). I overheard a man I assumed was the event manager discussing the length of the queue with members of staff and deciding that there would need to be a delay re-starting the show; everyone had to be served, he said. On balance this seemed like a good decision to me; an unplanned adjustment based on understanding and good sense.

Debris from the ice cream queue was scattered across the cinema after the interval but staff remained relaxed and smiling. Several melting children were carried in and out by parents; doors were quickly opened for them and those in need were made welcome on bean bags in a foyer (where some families, inevitably, spent the entire show). Our children could make whatever noise they wanted and move around if and as they wished. One member of the cast (Scar, I think) took off his mask and explained to the children that he was only a man pretending to be a lion. The show itself (unadjusted in terms of content and length) was magnificent. It had never occurred to me that I could take pleasure in this; I might not be interested in Harry Potter on the inclusive silver screen but The Lion King in the friendly West End: well, that was really something.

And finally

2014-02-22 14.58.32After writing this I’ve realised that understanding goes a long way to making mainstream settings feel inclusive and that special initiatives don’t necessarily make Dylan feel comfortable. I’m also reminded that language-based arts are challenging for Dylan and that the most inclusive arts tend to be visual. Perhaps not surprisingly, cinema is one of the most readily-adapted art forms where small adjustments can make a significant contribution to the quality of someone’s life.

While this post doesn’t respond to the precise challenge set by Tinc I hope that readers from the museum and education sectors, as well as those with an interest in autism, have found it illuminating. I’ve certainly found it helpful to write – thank you, Tinc!

Images:

The photos were taken by me on visits to Weston Park Museum, Kelham Island Museum, Magna and The Millenium Galleries (all in or near Sheffield). Other photographs were taken in the Children’s Library, Showroom and Cineplex in Sheffield and outside the RSC in Stratford-Upon-Avon and (with Ella) at The Lyceum in London.

Mother And Son In Aspect Ratio 1:1

showroomOne 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.

soundonsight.orgI 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?

*

english.rfi.frOnce 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.

*

thechildrensmediaconferenceThe 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

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

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

Random and ordinary

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

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

The bunker

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

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

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

Voices

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

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

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

Ears and eyes

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

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

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

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

Blood and hair

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

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

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

Extraordinary miracles

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

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

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

References and Links:

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

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

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

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

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

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

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