Emotes

Dylan turned 23 this month. To celebrate his birthday I took him to Chester for a short break. A trip to the zoo and an overnight stay in a ‘moon hotel’ was followed by a day walking the city walls and looking at the river, canals and cathedral. These are things which Dylan loves and we had a marvellous time.

This year I gave Dylan a remote-controlled car for his birthday. He has taken an interest in cars recently, pointing them out to me and saying ‘car’. His particular interest seems to be black taxi cabs but I couldn’t find one so he has a red saloon instead. Still, its headlights and rear lights flash and it moves left and right as well as forwards and back. It’s quite exciting but a bit tricky to manoeuvre so I’m not sure it will work for Dylan who could find it frustrating  (or pointless).

I didn’t have a particular gift in mind for Dylan this year so I looked around a ‘gifts and novelties’ section of a department store for inspiration.  As well as the car, I picked out a ‘Gentleman’s Hardware’ picnic box which Dylan seems to be enjoying. He often takes a packed lunch on his trips out so this is something he’ll get lots of use out of. While I was in the store, my attention was also caught by a box of ‘Emotes’…

Because Dylan uses symbols to communicate I’m always on the look out for visual resources and the Emotes looked interesting. Essentially, the product is an emoticon glossary, presented as a card index: one side of the card has a picture of an emoticon and the reverse side carries a definition and explanation of use. A fun present for a social media junkie. I flicked through the cards in the box, embarrassed (by how much I had misunderstood) and  amused (pile of poo? really?).

I don’t text very much or use social media language. I understand happy and sad faces, and I include them in messages sometimes,  but that’s about my limit. I’m too scared of making a faux pas after spending years thinking that ‘lol’ meant ‘lots of love’ and wondering why people I hardly knew kept sending it to me. Now, I try and avoid inserting funny faces into my emails and texts.

But while I could clearly learn things from the cards, it wasn’t really myself I was thinking about. Could the emotes help Dylan to understand his emotional life and communicate his feelings, I wondered? Some of the Emotes are the same as makaton signs so would be reassuringly familiar, but there were symbols that might develop nuance and range. Here is worried for example, an emotion which I think Dylan experiences quite frequently:

And this is confused:

Although I spend most of my time encouraging Dylan to find his voice, there are times when this might be useful:

And there’s even a blank to create your own emote. I like the idea of leaving it empty, actually; having an option for not feeling anything strikes me as pretty useful. While the box includes some inappropriate cards (a gun), others would almost certainly amuse (that pile of poo)  or excite Dylan (piece of cake). The set cost £12.00.  I decided to buy one – not to gift wrap  (Dylan would probably think that a disappointing present) but to introduce as part of the on-going attempt to support Dylan’s communication.

I don’t think that, so far, they’ve been of much interest to Dylan.  When I showed them to him on his birthday he had a giggle at the pile of poo and put the picture of a piece of cake in the plastic stand. Fair enough – this was the bit of his day he was most looking forward to.  Dylan also enjoyed the ‘fist bump’ card and quickly grasped this as a greeting or alternative for ‘good job’. Two weeks later, Dylan is still fist-bumping me. The cake is still in the stand, however, and Dylan shows no interest in changing it or in looking at the other symbols. ‘Never say never’, is my mantra, however;  Dylan may pick them up one day.

I do think Emotes are a potentially useful resource for people (children or adults) who struggle to understand socio-emotional communication. And you don’t need to have an autism diagnosis to be in that category lol 🙂

Transition To Care: the phoney time

It is nearly week seven of Dylan’s residential placement but it still feels as unreal as the ‘Phoney War’ my dad used to refer to when things you expected to happen didn’t materialise. It’s not that Dylan isn’t based at his new home: he is. But transition thus far has been so quiet that neither Dylan nor I really believe it. I’m not sure whether this is a good or a bad thing. Some days I tell myself it is going so well because of this phoney time. Other days I hold my breath; the reality will sink in one day soon and then I’ll wonder if I should have faced up to it before.

A bit of everything

phoney 002What I am calling phoney time arose through fortune as much as planning. The first stroke of luck was that after Dylan’s residential placement had been approved his day centre requested a month’s notice. Had this not been the case Dylan’s social care-funded day centre placement would have ended one day and his health care-funded residential placement started the next. Clearly this would not have been great from Dylan’s perspective (or from anyone’s except the funders) but this is standard practice and difficult to challenge. The 28 day notice period, however, provided a fortunate opportunity for a programme of interim activities involving home and both providers.

For the first three weeks of Dylan’s residential placement therefore he was based sometimes at his day centre, sometimes at his new home and sometimes with me. On the days Dylan was at his day centre he was observed by staff from his new home and on days when he was at his new home, members of staff from Dylan’s day centre provided guidance and support. This gave Dylan an opportunity to get to know care workers from his new setting as well as enabling the exchange of information, practice and expertise across staff groups.

This process was not without its challenges. The two settings had different values and practices which were evident in some of their approaches to supporting Dylan. By the end of the third week staff from the new home were keen to employ their own systems and establish consistency in Dylan’s care. Observing staff and managers trying to accommodate practices from another setting helped me to understand how confusing transition could feel for the autistic person at the heart of the process. The exchange of staff across settings gave those involved a glimpse of this through Dylan’s eyes.

So for the first three weeks of his placement Dylan got a bit of everything: his favourite activities (swimming, skating and library) continued with his day centre; other familiar activities (his exercise routine for example) were established in the new setting; and some new experiences (such as helping in a community shop) were introduced. During these shared weeks Dylan didn’t have to say goodbye to anything; he continued to see his familiar day centre staff and he saw plenty of me as well. This was partly because of the amount of ferrying between places I had to do during this time; Dylan and I spent hours together on the road, working our way through favourite CDs. Although the nights Dylan spent at his new home increased each week, he never stayed longer than his longest respite. So as far as I was concerned Dylan hadn’t yet left home; we were in a phoney zone.

Lots of mooey

Reighton 2015 125Dylan and I had a holiday booked for the fourth week of Dylan’s residential placement. This was not something I had expected earlier in the year; Dylan’s increasingly ‘challenging behaviour’ meant I had resigned myself to not being able to take him away this summer. Dylan loves his holidays so accepting that I could no longer support him by myself had been hard. But isn’t it just the way of things that the minute I made this decision my friend Julie asked whether we would like to rent a holiday cottage with her and daughter Ella 🙂

There was a chance that supporting Dylan and Ella would be too much for us if they became distressed by each other or at the same time – and if Dylan became very upset I would need to protect Ella and Julie as well as myself. Julie would be able to offer support to me, however, and her presence might have a positive effect on Dylan. We would, we decided, try it; if it proved too difficult I would head home.

Happily, we had a good week. Dylan seemed to enjoy having other people around and we did lots of fun things. There was a focus on transport (steam trains, land trains, miniature trains, pedalos, boats, buses and chair lifts) but we also spent time on the beach, visited churches and a stately home, and ate at the Magpie Café. And Dylan, of course, got to spend a whole week with his ‘mooey’; that he had already left home could not have been further from our thoughts.

Phoney signs

phoney 005Before we left for our week by the sea it was agreed that when we returned Dylan would be based full time at his new home. Although we were still within the 28 day notice period it was also decided that joint staffing would end and the new setting assume responsibility for Dylan’s care. In this way our holiday would signal the end of the first phase of transition.

As I am on leave during August however, and able to spend time with Dylan, I am still around too much for him to miss me or think anything amiss; Dylan still hasn’t been away from home for more than three nights at a time.  As well as allowing me to spend time with Dylan, the timing of his transition has been useful in other ways. One thing that has taken me by surprise is the effort parents need to put into the process. In addition to the ferrying between places there are meetings to attend, paperwork to complete, care plans and transition documents to develop, emails to write, phone calls to make, admin to sort out (mostly relating to change of address and adjustment to benefit entitlements) and the not insignificant time (and money) on, of all things, shopping.

I had originally assumed that Dylan would take his belongings from home to his residential setting but was advised this would not be a good idea: remember how it felt when you left home, one of the care home managers observed, and how important it was to you that your childhood room was still there? So I’ve been buying duplicates instead. I’ve tried to introduce some differences but have played safe and reproduced key items like Dylan’s CD player, TV set and his toiletries and personal items. I arranged for some things to be delivered (like Secret Santa) while we were away and am introducing others gradually; a ‘big bang’ approach would be too overwhelming I decided (not least financially).

Some days I feel exhausted by the process. I suppose it’s not dissimilar to the way the bereaved are kept busy in the aftermath of a death and grieving must wait – or, to be less melancholic, the effort expended by parents helping a child to leave for university. But because of Dylan’s disability, and particularly because he doesn’t use speech to communicate, the time taken to record his care and other needs is enormous. I could not have undertaken this at any other time of year; had transition happened while I had work commitments I would simply not have coped. The second stroke of luck, then, was that the timing of Dylan’s transition could not have been more perfect.

Yesterday, while I was in the city, I called into my office to pick up some marking. That’s a sign that the summer is over, I told the friend I was with; this phoney transition will have to end then too. But, she observed, from what I had said things were going well for Dylan? Well yes – except I’m not sure he realises yet that he’s left home. Dylan still keeps his day centre diary in its ‘overnight’ spot (not even the place he kept it at weekends and holidays) and, even more worryingly, he refuses to leave any of his possessions at his new home. When I pick Dylan up he has packed everything and is ready and waiting to load up the boot of my car. Oh dear, my friend said: that’s not good.

Positive signs

phoney 003I’m quite sure this isn’t because Dylan is unhappy in his new home. On the contrary he appears to be having a fine time. Dylan’s programme has been full and varied with the familiar activities he loves as well as new challenges and experiences. He is always happy to return after he has spent time with me and he seems to be settling into his room and to the routines of the home. As well as getting used to new support workers, Dylan is responding well to a communication system which promises to make a positive contribution to his life. Apart from a minor incident on our return from holiday, he has been calm and happy.

The fact Dylan transports everything to and fro suggests, however, that he doesn’t yet realise this is his home now rather than his respite setting. Dylan has always been careful with possessions, taking responsibility for his belongings and managing them independently, so it is quite understandable that he would continue to bring these home with him. He only tries to bring home things he has seen me take or has taken there himself (not the things from Secret Santa). Perhaps, as far as Dylan is concerned, someone else uses the room he sleeps in on the nights he isn’t there (as happens with a respite bed)? And why should he respond to my suggestion: why don’t you leave these here Dylan? I have, after all, spent years telling him not to leave things behind. The fact I have duplicated his belongings doesn’t stop Dylan from bringing them home either; as he collects multiple copies of books and CDs, having duplicate hair brushes, toiletries and CD players is a bonus.

phoney 006Although a visual timetable helps Dylan make sense of his life in concrete terms (where he will be and what he will be doing) it cannot communicate more abstract concepts. ‘Home’ is a complex idea. It is more than the house where you spend your time; it is the place where you feel safe and loved. The circle around the house in the symbol system which Dylan uses is an attempt to communicate the emotional freight of a building, i.e. that this particular house is the one where you belong. This is not something that can easily be explained however; it is through lived experience that Dylan will come to understand this in his heart.

Some of what Dylan is experiencing is not specific to autism or learning disability; anyone moving house or leaving home for the first time would take a while to feel at home or become accustomed to living independently from parents. If the key difference in relation to Dylan is that it is harder to explain the process, maybe the challenge is to help him understand it emotionally rather than cognitively. It is perhaps for this reason that I haven’t written a social story about ‘leaving home’ for Dylan. The ones he has been offered so far focus on more immediate and concrete events. This week, for example, I was unable to use my car so had to collect Dylan by train. This provided a useful opportunity to encourage Dylan not to pack all of his belongings for the visit. Staff at Dylan’s residential setting wrote a social story explaining that he wouldn’t be able to carry everything on the train so should take just an overnight bag with him. This seemed to help and for the first time Dylan left things in his room.

It may be that these early weeks have been about allowing Dylan to absorb the experience of transition rather than trying to explain to him what is happening. There could, I realise, be challenging times ahead, especially as Dylan can have a delayed reaction to change. Maybe my ‘Phoney Time’ is another person’s ‘Honeymoon Period’?  In which case I should probably ask myself why I chose a military rather than a romantic metaphor. But whatever I call these early weeks, they have been helpful in alleviating rather than creating anxiety. And while I know the move to a specialised setting cannot magically eradicate the behaviours which triggered the placement, the early signs are positive.

Real time

phoney 004There is still one more piece I want to write before the end of phoney August. After that I will consider Dylan and I to have crossed the line and I will start a daily diary. Those posts will be different to the ones I have been writing in the last two years and will focus less on Dylan and more on the experience of separation from a parent’s perspective.

There are things I could say already: that it was almost harder to leave Dylan the night he was charming and chatty and held on to my hand, smiling and laughing, when I dropped him off. That there are nights I have walked my house crying, heaving with grief. That I have loved walking the hour it takes into the city instead of driving. That I have swum first thing in the morning. That I spent a day with a girlfriend without looking at my watch (except to make sure we didn’t miss the film). That I said ‘are you alright for time?’ to someone instead of being asked it. That it was with shock I realised that I could read during the day instead of only last thing at night. That I sleep through the evenings as if making up for years of exhaustion.

All this and it hasn’t yet begun…

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Images:

The photo of Dylan, Ella and Julie was taken in Whitby; I bought the wooden letters for the door of Dylan’s new room the other day, hoping they might help identify it as his space (he has some on his door at home); the ‘home’ symbol is from makaton but is commonly used across communication systems.

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.

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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 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.

 

Shredding Pinocchio

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

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

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

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

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

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

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

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

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

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

*

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

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


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

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

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

…/

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

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

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

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

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

Reference:

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

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

Dylan And The Dinosaur Of Anxiety

WP_20141228_18_22_41_ProSince last June I’ve been puzzling over some ‘challenging behaviours’ which Dylan developed out of the blue after twenty years of gentleness. The behaviours began with periods during which Dylan threw himself around violently and progressed to physical attacks on others, usually focused on ears. Prior to these episodes Dylan would often go into a trance-like state and during the incidents would appear not to recognise familiar people. At these times Dylan would be ‘unreachable’ and afterwards appear exhausted and seem not to have any recollection of events.

I have described my search for possible explanations for the behaviours, and the methods I used to document them, in previous posts (for example here and here). As my approach to working with Dylan (who doesn’t use speech to communicate and who has a significant learning disability) has always been that behaviour is communication I focused initially on environmental factors. There had been so much change in Dylan’s life that this seemed a likely explanation: in the previous few years he had experienced the death of his Gran and departure of his sister and had left education and care settings where he had been happy. Furthermore, Dylan’s provision on leaving school lacked the consistency he needed. These changes seemed a plausible explanation for Dylan’s distress.

The episodes declined following some adjustments to Dylan’s day care: full-time rather than part-time attendance, a change of support worker and an increase in Occupational Therapy all seemed to help. Other possibilities presented themselves. The ABC charts I used to analyse the behaviours suggested, for example, that they may be linked to food. Removing sugar from Dylan’s diet appeared to have an impact; the incidents which had been happening daily reduced to around once a week. I continued to puzzle, however, over behaviours which, while less frequent, became increasingly severe.

Neurological investigations

WP_20141228_18_22_49_ProDue to the symptoms which accompany the behaviours (the ‘absences’ and exhausted aftermath) Dylan’s GP referred him for neurological investigation. Epilepsy and schizophrenia can develop around the age Dylan is currently so I had specific concerns that Dylan’s behaviours may be due to the onset of one or both of these.

It took a while for Dylan to access an appropriate clinic. The first consultant we saw had no experience with ‘non-verbal’ patients with learning disability and autism and simply shook his head. The colleague he passed Dylan onto, however, was experienced and skilled. Dylan doesn’t tolerate medical interventions (I have written about this here and here) so I knew it would be challenging if recommended. Happily, the consultant whose clinic we had arrived at understood this.

WP_20141230_18_53_14_ProWithout medical investigations (MRI, EEG) he couldn’t say definitively but in his view, the neurologist said, Dylan probably wasn’t developing epilepsy or schizophrenia. The pattern of the episodes – their incidence and duration and Dylan’s response during and after – did not fit with the classic presentation. He couldn’t rule it out entirely – there were instances of epilepsy triggering the sorts of behaviours I had described – but these were rare.

It was much more likely that Dylan’s behaviour was a reaction to environmental factors or maturation. Puberty, the neurologist pointed out, can trigger emotional reactions which are difficult for any young person to make sense of; for Dylan, these feelings could be quite confusing. ‘He is a strong young man’, the consultant observed. ‘And you, if you will excuse me saying, are not a young woman or strong like this’. Keeping Dylan physically active would help, he told me.

I preferred to believe it was consultants who were getting younger rather than I who was getting older, I told him. But, I reassured the consultant, Dylan’s schedule was filled with OT and sports activities which, I agreed, were helpful. The consultant smiled. Then he told me how – years before, while practicing in WP_20141231_16_56_00_ProGermany – he had observed that the adults with learning disabilities in a institutional setting he visited exhibited challenging behaviour for 51 weeks a year. But once a year, he told me, the residents were taken on holiday where they had access to expansive grounds and were able to run free. During this week each year, he said, the behaviours disappeared.

The neurologist realised (I think) that Dylan has an active life and was not intending to draw a direct comparison between Dylan and the adults in his story. What he was reflecting, however, was that behaviour is usually communication. In a follow-up letter to me he wrote: “I thought that it was most likely that the behaviours you describe are dissociative coping behaviours. I suspect that they help Dylan to deal with some form of distress… Hopefully you and Dylan’s other carers will, in time, be able to learn even more about what is likely to trigger attacks so that his care can be modified and that attacks can either be avoided or contained more effectively.”

Environmental explanations

This makes sense to me. It is also the sense which Phoebe Caldwell, in her marvellous book Finding You Finding Me (Jessica Kingsley, 2006) makes of such behaviours. It isn’t a new book but I stumbled across it (via a circuitous route through poetry and Rowan Williams) only recently. How could I have missed it? I haven’t finished reading it yet but already it has changed my world. I’ll say more about the book in a later post. For the moment I want to share just a couple of things Caldwell has to say which seem particularly pertinent:

Families may be at their wits’ end – and sometimes feeling guilty at their despair… I meet staff who are being asked to cope with impossible levels of aggression and management who are unable to come up with solutions. In many cases, person-centred planning is interpreted as how we can fit individuals into our agendas. Quite a number of the people in the most deep distress are boys fighting their way through the hormonal jungle of puberty. (pp. 25-26)

As for those whose severe learning disabilities are compounded by autism and who cannot speak for themselves, all we can do is judge from their behavioural responses to people and their environment. From the evidence of the sometimes extreme behavioural distress, one has to presume that many of them do continue experiencing fragmentation [a process arising from overload in which sensory experience breaks down ] throughout adult life. They cannot help themselves through logic and communication: their only resort is to develop coping strategies, which can so often include severe aggression. (p. 35)

WP_20150106_16_15_42_ProAs well as Dylan’s referral to a consultant neurologist I had requested a referral to a consultant psychiatrist; while this dual track (medical and social) approach could have resulted in conflicting verdicts, happily on this occasion the professionals agreed with each other (and with Phoebe Caldwell). The psychiatrist’s preliminary assessment, like the consultant neurologist’s, is that Dylan’s behaviours are likely to be due to environmental triggers. In particular, it is suggested, Dylan’s distress is probably caused by anxiety.

I have found this triangulation of professional perspectives helpful in that it has allowed me to go forwards with more confidence; a convergence of views on cause helps clarify response. In his letter to me the neurologist described Dylan’s behaviours as functional in that episodes ‘move [Dylan] on from experiencing distress to a place in which he cannot recall the distress and perhaps feels physically exhausted’. The psychiatrist has suggested that it is possible to help Dylan to ‘unlearn’ a behaviour that he has come to associate with such release from stress. At the moment Dylan is so fixated on removing my ears that the possibility I can re-direct this behaviour feels out of reach. The fact that the psychiatrist believes this is a reasonable goal, however, keeps me optimistic.

The unlearning

WP_20150114_08_23_04_ProI have had some unlearning of my own to do. My work in education means I am used to a cycle of monitoring, assessing, recording and reporting. Going into my initial meetings with professionals I reflected that I was probably ahead of a system which would (I presumed) require me to produce data I had already collected. It was with a sense of resignation then (not, I hope, arrogance) that in advance of the meeting I asked myself what a psychiatrist might tell me that I didn’t already know. Happily, however, there turned out to be plenty. With building interest and admiration I watched the psychiatrist bring her professional knowledge and understanding to the data I had collected. While I might be able to observe and record my son, I realised, what I didn’t have was this particular lens through which to filter the material. What I also lacked was the wide experience of other young men like Dylan which the psychiatrist could draw upon (for while Dylan may be different he could also be similar). My data charts had lots of good notes in them but they were in search of a tune; what the psychiatrist did, I reflected afterwards, was orchestrate.

The Dinosaur

WP_20150114_08_22_33_ProWhile supporting Dylan to ‘unlearn’ (inappropriate) coping responses will be useful, it is obviously preferable to modify the environment so as to reduce Dylan’s distress. The psychiatrist’s ‘orchestration’ of my observations of Dylan therefore focused on the identification of possible explanations for his anxiety. I liked the way she wove observations together to make connections I hadn’t considered.

One issue raised, for example, was that the first occurrence of the behaviour happened while Dylan was in overnight respite the week after I had taken my first break without him (which I wrote about here). It might be the case, the psychiatrist suggested, that although Dylan appeared to cope while I was away perhaps the following week, when Dylan returned to respite care for his regular overnight stay, he was made anxious by uncertainty as to how long I would be gone.

Some of the most challenging incidents have happened while Dylan has been viewing DVDs and during the meeting we were able to link possible anxiety about separation with Dylan’s reaction to certain film sequences. One scene which seems to cause Dylan particular distress is a moment in Dinosaur when an egg becomes separated from the mother. Those involved in Dylan’s care had been aware that such scenes can trigger behaviours. We had also noted the impact of my short break on Dylan and tentatively used the word ‘separation’. What the consultant was able to do, however, was confirm that this might be relevant while at the same time signalling its necessary complexity.

Necessary Complexity

WP_20150120_15_01_11_Pro-1The complexity is that we might have two dinosaurs rather than one. Because if it is the case that a son or daughter is anxious about separation, a mother’s intuitive response (especially an anxious mother) can be to avoid separation. Instead of planning for Dylan to spend increasing time away from me as preparation for leaving home, my instinct now was to keep him close. The dinosaur of anxiety could be mine, then, aswell?

But the psychiatrist wasn’t going to allow this; her job was to get rid of the dinosaur not let another one into the room. Dylan she said (offering another version of what the neurologist said) is in his prime; he doesn’t want to go collecting leaves with his mum. I looked at her aghast. How did she know that’s what we’d been doing at the weekend? B-b-but he likes doing that, I retorted. He liked it, she pointed out, because it was what he knew. What I needed to do was support him to do other things too, confidently and without me. In order to deal with separation anxiety, it seems, we have to learn to be separate. That will be a dinosaur of a challenge for me as much as for Dylan, I know.

The metaphor

WP_20150120_15_02_10_Pro-1Shortly after the meeting my attention was caught by a ‘hatch your own dinosaur egg’ pocket money toy (for £2.99). I couldn’t resist buying it as a Christmas stocking filler for Dylan. You put the egg in a jug of cool water and increased the size of the container as the hatching progressed; perhaps looking after the egg could help re-shape Dylan’s response to the film sequence?

The egg showed no sign of life for a few days and Dylan paid no attention to it. One evening, however, a crack appeared, quickly followed by a green nose. Dylan seemed alarmed so I moved the egg from his bedroom to the kitchen where we could keep an eye on it together. The rest of our holiday was spent checking the egg. Dylan’s response shifted, slowly as a dinosaur, from anxiety about its presence to curiosity. By New Year’s Eve the birth seemed imminent and Dylan interested. If it hatches before midnight, I told him, we’ll call her Eve. If she appears tomorrow she will have to be New Year’s Day-sy.

And so it was that after twelve days Daisy was born. Since her arrival she has continued to grow as Dylan – who seems to really like her – bathes with her twice a day. Unfortunately Daisy’s skin seems to be ‘pruning’ badly (the warm water I suspect) and we may soon be faced with a tough decision about the future. Daisy may only be a metaphor, but she could be quite a useful one…

 Reference:

Caldwell, P. (2006) Finding You Finding Me. Jessica Kingsley

All photographs are of Daisy.

Memory And Autism: emotion and the senses

Retrieving Memories

What’s your earliest memory? Someone I know claims she can remember being in a pram pushed by her mother, but in the earliest memory I have I am three.

I’m at the wedding of a distant relative in an unfamiliar town. I’m not used to social gatherings and I am under the table, trying to make myself invisible. My younger brother is in a Moses basket on the floor next to me and I’m playing with the fringes of his pastel-check blanket. It smells of milk.  I’m winding the woollen tassels round and round my fingers. It is dark under the table and the sounds from the hall are muffled. There are lots of uncles and aunts and cousins I don’t know and whose voices I can’t understand.

I sometimes wonder why this is my earliest memory.  Why did this unfamiliar event stay in my head rather than the ordinary days I was living? Is it because it was different that I remembered it?  There is no photograph of me under the table nor any photographic record of the occasion in my immediate family, so I can’t have based my memory on a visual prompt. This view I have from under the tablecloth of a bride sitting at a trestle table at the head of the room puzzles me.

*

I’ve no idea what Dylan’s earliest memory is.  I sometimes ponder Dylan’s dream life too, imagining that while he sleeps a jumble of real life and Disney fantasy might play in his head. I use the words ‘dream’ and ‘memory’ with Dylan sometimes, although I doubt they’re meaningful to him. Some mornings when I wake him I ask:  Did you dream Dylan? Did you see pictures in the night?  And when we’re revisiting places or I’m trying to recall a sequence for him I will prompt: Do you remember Dylan?  Do you have a memory of this?  What is in question here is not whether Dylan has dreams or memories, which he undoubtedly does.  Based on what he has shown me, I’d say Dylan’s memory goes a long way back in time.

In 1996, when Dylan was two, we visited Pont-Aven in Brittany during a family holiday. We went to the art gallery in the town and saw a Schuffenecker exhibition from which I bought  a poster. When Dylan was nine years old we visited the town again. I can be precise about timings because the two posters which record these visits have dates on them. On this later visit, Dylan led us confidently and without error back to the art gallery and searched it until he found the original Schuffenecker of our print. That day, there was a Gauguin exhibition at the gallery and, again, we bought a print. After we left the gallery, Dylan took us to a specialist biscuit shop where we had chosen a gift for his Gran seven years previously.

I’m not surprised that Dylan should remember a painting and a tin of biscuits  (both are things he loves) but I am impressed that this involved him remembering something which happened when he was two years old. Later, I was to realise that Dylan’s memories might go even further back, to babyhood.  The following poem (published in my collection Walking on Tiptoe and Other Poems) describes a moment I had to pinch myself to believe.

Clown –

The first thing I bought (waiting)
suspended from a stripy
papier maché balloon.

I hung it above his cot
and in that first year
would act a little game
as I settled him down at dusk
or greeted him in first light –
bending (not quite enough)
I’d catch clown, make him tremble,
then pull a crosspatch face:  Naughty clown!
You bumped me on the head.

~

At the end of that first year
my son turned silent, caught in a world
without play or make-believe.
Clearing out baby things years later
I strung it up anyway –
hung it in his nearly-teenage room
of toddler videos and Thomas the Tank.
He raised his sloppy point, gestured
at my head and (not remembering)
I looked behind me, perplexed.
Then he stood up, pushed me
into the papier maché clown –
bump bump bump on the side
of your head, mummy –
and laughed me straight in the eye.

I sat down on his bed. Naughty clown
I whispered. You bumped me on the head.
You naughty clown to make me cry –
to raise my perfect baby from the dead.

Memory and Emotion

A report in the BBC Radio 4 programme All in the Mind suggested that people who have remarkable memories may be making  emotional connections with the material (18th December 2013). Discussing the research on which the report was based, Christian Jarrett – who also  noted a high incidence of false memory among the research sample –  emphasised that  ’emotional connection’ is still only a hypothesis. Emotional  connection could explain why Dylan remembered the geography of Pont-Aven; on our return visit he was surely motivated by having previously enjoyed the gallery.

Scientists don’t really know why some people demonstrate remarkable memories, though, and aspects of this research surprise me.  I had always assumed that people who demonstrate phenomenal memories  – those who enter quiz shows or perform feats of extraordinary recall –  do so by removing  information from its social context, rather than by emphasising this.  Autism has frequently been connected with this sort of memory. It’s movies like Rainman and reports of autistic people reproducing fantastic details from memory (such as Stephen Wiltshire’s architectural drawings) which are at the root of this. I’ve met autistic individuals in my own community who demonstrate this facility: the boy who had committed the A-Z of my city to memory and could tell me which page number I lived on if I told him my postcode; the young man who had learned the car registration plates of all the regular users of the car park.

While autistic people may be reputed to be good at remembering this sort of abstract information, they have been thought to struggle with emotional intelligence and especially empathy.  This, on the face of it, might challenge a link between memory and emotion. But what if the hypothesis is right? Could the boy have learned a car park of registration numbers because of a strong emotional connection? Assuming it was a deep interest in transport that motivated him to memorise the plates, then Yes.  Equally, buildings  or roads or dates could be committed to memory if you cared enough about them.  Although the research linking memory and emotion wasn’t explicitly focused on the autistic mind, it may add weight to the suggestion increasingly being made that autistic people experience excessive emotional connection rather than any deficit.

Memory Retrieval

Let’s assume, for a moment, that remembering something involves making an emotional connection with it – and let’s also hypothesise that being autistic involves excessive emotional connectivity.  That might be quite an uncomfortable place to live: it could mean that you remember an awful lot. Actually, I am persuaded by this possibility. I have a suspicion that Dylan remembers and stores everything. My hunch, however, relates to Dylan’s ability to retain and store memories, rather than to retrieve them. My hazard is that it is the retrieval of memory which is challenging for Dylan, rather than memory itself. Dylan’s limited communication probably doesn’t help (for retrieval mechanisms are usually linguistic) but I don’t think this is the root of the issue.  A key difference between myself and Dylan seems to be that he is better at storing and retaining stuff than I am, and I am better at retrieving it (perhaps because I’ve less stuff to sort through).

Much of our education system – certainly that part of it which leads to public examination – is based on the retention and appropriate retrieval of information. One of the challenges for all learners, not just those who are autistic, is retrieving and applying information appropriately to new situations. Part of supporting students to learn therefore involves helping them to remember information and to retrieve and apply it when required. I point out to my students that mnemonics like Richard of York Gained Battles in Vain (for the colours of the rainbow) and Rhythm Has Your Two Hips Moving (for the spelling of rhythm)  are specifically designed to help children to retrieve information more easily.  Mnemonics (the etymology relates to the River of Mnemosyne, representing remembrance in the underworld)  can be remarkably effective. What mnemonics, and other retrieval methods, offer us is a way of organising abstract information (like a sequence of letters, numbers or colours) into a narrative. Narratives are easier for us to remember because they are social stories which connect with our experience of being human. Perhaps this is what is at the heart of the research I referred to earlier: not ’emotion’ exactly, but our use of social narratives, freighted with emotion, to recall information?

Memory and the Senses

But social narratives aren’t supposed to carry much weight if you’re autistic; Dylan isn’t interested in shared experience. What is it, then, that helps him to remember so deeply? Perhaps there is a clue to be found in the three year old girl under the table at that wedding. If I read through the account of my earliest memory what I notice most is the sense data: the quality of the light, the sound of the room, the feel of the wool in my fingers, the smell of my brother’s milky basket.  Sense data is incredibly powerful; it is at the heart of the greatest narrative of memory ever written, Proust’s Remembrance of Things Past, in which the taste of a madeleine triggers the recall of boyhood memories.  http://www.authorama.com/remembrance-of-things-past-3.html.

When encouraging my Life Writing in Education students to access their deep memories of schooling  I use an extract from Proust. Then, in order to engage their senses, I pass round madeleines for them to taste and  I set up a range of sensory-based activities such as walking blindfold round the classroom. These exercises are designed to help students to think themselves back into their childhood selves and reflect on their role as educational professionals emotionally not just cognitively. To unlock these  memories – in order for students to retrieve them – they need to use their senses. Perhaps rather than emotion or social narrative, it is Dylan’s heightened senses which allow him to commit so much information to his deep memory.

While developing this post I came across an article in Psychology Today by Lynne Soraya, a woman living with Asperger’s Syndrome, which focuses on early memory and autism. Soraya suggests that autistic people have strong early memories and, as I argue here in relation to Dylan, that the senses may play a role in this. There’s a link to the article here:  http://www.psychologytoday.com/blog/aspergers-diary/201312/early-memory-and-autism

Thinking about memory while writing this post has helped me to imagine Dylan overloaded with a jumble of memories  laying siege to his senses and taking up processing room. But it has also made me wonder if perhaps we non-autistics manage the world because, with our duller senses, our  tendency is not to remember, but to forget.

Reference:

Barrett, Elizabeth (2007) ‘Clown’ in Walking on Tiptoe and Other Poems, Bluechrome Press