The Tandem Of Memory

Cornwall, 2008

Cornwall, 2008

One of the things Dylan and I enjoy doing (which is perhaps obvious from our blog photo) is tandem cycling. I will not forget our first time. We were on holiday in Cornwall in the summer of 2008 so Dylan would have been 14. Our holiday cottage was close to a cycle hire on Cornwall’s coast-to-coast trail and all week, as we drove by on our way elsewhere, I found myself hankering after a bike ride.  ‘If your brother wasn’t autistic’, I told my daughter, ‘we could do that.’

There are some things which aren’t possible with an autistic child in the family. Mostly I try not to represent this within a deficit framework, as a loss, but focus instead on the opportunities which Dylan’s interests allow –  rides on steam trains for example. Sometimes, though, my daughter or I would sound a note of frustration at perceived obstacles. On summer holidays, in particular, we seemed to be presented with opportunities which didn’t feel like an option for us. So every day on that holiday in Cornwall, as we drove by the cycle hire, I rehearsed the reasons it wasn’t possible.

Dylan wouldn’t be able to balance. He had no awareness of people or traffic so wouldn’t be able to steer.  Even if he managed to stay on and avoid other cyclists he wouldn’t know how to brake. He would fall off and hurt himself.  And he wouldn’t wear a helmet.  He could be seriously hurt. No, it was out of the question. ‘We could get a tandem mum’ my daughter retorted.

While being on holiday with an autistic child can bring to mind all the things that aren’t possible, equally they can stimulate a certain courage. Everyday routines may be enabling when you are living with autism but they can also be limiting; holidays can be like lifting a sash window after rain and letting it stand open just a little. ‘No way’, I replied: ‘we’d both end up in the hospital. Your brother is heavy. And he’s taller than me. No way’.  But all week that window stayed cracked open. And each day, as we drove past, we could feel the air on our faces.

 *

Norfolk, 2010

Norfolk, 2010

On the day before we were due to leave  I said Yes. In my memory it has remained one of the most joyous days of my life. I remember chatting to the cycle hire lad, explaining the situation and hoping to be talked out of it. There was something encouraging about his nonchalance; he had no doubt that I would be able to manage. He showed us to a car park and told us to practice a little; if we changed our minds that was fine. But oh the exhilaration as I managed the first few yards. The excitement was overlaid by apprehension as we wobbled along  the trail later that day but the main feeling I remember is happiness.

Since then, tandem cycling has been a regular activity. I tried Dylan on a solo bike once, in an empty car park, to see if he could manage but he became distressed.  Dylan wasn’t comfortable or confident and that’s fair enough; I need to trust his evaluation of his own limitations sometimes. And in any case, tandem cycling has all sorts of benefits.  It helps develop  Dylan’s  coordination, for example, and his trust in somebody else. He also learns to work in partnership and to understand the importance of team work.  Perhaps one of the most significant benefits, however, is that tandem cycling requires us to develop alternative ways of communicating.

Monsal Trail, 2012

Monsal Trail, 2012

Because I have my back to Dylan on a tandem we  can’t use the non-verbal strategies we usually do. So, for example, if we approach a junction  I can’t point left then right and ask ‘which way, Dylan?’  because I can’t see his answering point. Dylan doesn’t understand the abstract ‘left’ and ‘right’ so I can’t ask a straight question. What to do? I could make the decision for us but that takes away Dylan’s participation.  I could stop at each junction so we can use non-verbal communication but that means a stop-go ride (not great on a tandem).  So what we have developed instead is a system of vocal response to gesture, something I hope will encourage Dylan’s use of language off the tandem as well as on it (by increasing his understanding of ‘yes’ and ‘no’ for example).

Derwent Water, 2014

Derwent Water, 2014

For me, then, the greatest gift of tandem cycling is that it is a shared practice which requires the social use of language.  Dylan doesn’t simply have to pedal; he has to communicate with me so that we do it together.  Dylan’s limited core vocabulary includes the expression ‘pedal ready’, which he responds to perfectly, spinning his pedal to midnight to bear down on it in time with me:  ‘One, two, three, push Dylan’.  Dylan’s balance is marvellous and he sits impeccably on the back, responding to an increasing repertoire of commands and instructions:  ‘Duck Dylan’ if a tree branch lours too close to my head or ‘Bumps ahead’ if I spot sleeping policemen on the trail. He can, it’s true, be a bit of a slacker at times: ‘Push Dylan’ I shout ‘come on, push’. Sometimes I take my own feet off the pedals to encourage him to put his back into it – and when he does it’s like a sudden wind at mine.

 *

Clumber Park, 2015

Clumber Park, 2015

Our home city (sometimes referred to as The Rome of England) lies in the bowl of seven hills. You have to be fit to cycle here; whether I turn left or right from my front door within five minutes I have hit a gradient to raise the heart’s beat. Of course the serious athletes and cyclists love it;  high-viz vests jog and glide by my window in a constant stream from 5am till midnight.  But it’s not so great on a tandem when you are at the front and the man on  the back is over 11 stones and not pulling his weight.

Tandem cycling has always been something we do on holidays, therefore, and on the more manageable  trails which criss-cross the nearby Peak District and skirt the lakes and reservoirs. Although I’d love to own a tandem I cannot imagine lifting and securing one on a car roof rack by myself. So instead we hire them when we need to and, since that first ride in Cornwall, have enjoyed fabulous cycling across the country and locally. So last weekend, hankering after a bike ride, I planned a trip to one of our favourite places.

‘It’s exactly a year since we went to Clumber’ I told Dylan on the drive there. I knew that because earlier in the week I’d commented to a friend that the Honesty I’d bought at Clumber Park that day had done spectacularly well in my garden.  ‘In fact’, I said to Dylan, ‘I think that might be the last time we went  cycling’. I fell silent. I’d realised that it was approaching a year since Dylan moved to residential care.  For whatever reason, adjusting to new patterns of contact seemed to have meant less cycling. Then I remembered something:  ‘But you’ve been cycling haven’t you?’ I said: ‘Just not on the tandem with mummy’.  Dylan was silent; he  stared, inscrutable,  through the car window.

 *

Weir Therapy

Weir Therapy

At the cycle hire all seemed well. It had been raining a little so it was quiet and there were plenty of  tandems available. I decided to book one out for the whole day rather than our usual two hours:  we had a picnic with us and it was still early enough to explore as well as ride our usual route.  Within five minutes of setting off, however, it was clear that something was wrong. Dylan started chanting ‘hego, hego, hego’  (i.e. here we go), not in the excited way he announces the start of something he is looking forward to but repeatedly, meaning ‘I’m not comfortable with this, please stop’.  A moment later, the tandem wobbled and juddered as Dylan put his feet to the ground (something he has never done in all our years of cycling). I pulled up. ‘What’s wrong Dylan?’  I asked. ‘What is it?’  He couldn’t tell me, of course. And I couldn’t figure it.

Time to read a couple of poems...

Time to read a couple of poems…

I set off again but the chanting began instantly and, as we cycled downhill towards the bridge over the lake, Dylan scraped his feet on the ground shouting ‘oops, oops’ (meaning  ‘I’m scared of falling’). I had never known Dylan like this. Unsure what to do I suggested we wheel the bike along the path. This seemed to calm Dylan so after a while I indicated to get back on.  But Dylan was clearly still uncomfortable on the tandem; half way around the lake, a distance from the cycle hire and very close to water, the last thing I wanted was for Dylan to have a full-blown anxiety attack.

For the next hour I took things slowly. We walked quite a lot. We cycled short stretches. I chatted to Dylan while we were cycling to try and distract him from whatever thoughts were intruding. I got us back on the safest and most familiar routes of all the ones we have ever taken in the park. And I headed for the weir which Dylan loves to watch. The water seemed to calm him a little but when we set off again, heading away from the lake and onto a short section of road, Dylan put his foot down. He really did not want to cycle through the approaching gateway.

This is wider than the gate we had fallen at the previous year but still enough to make Dylan nervous.

This is wider than the gate we had fallen at  but still enough to make Dylan nervous.

Then I had a memory. The last time we had cycled in the park I had misjudged the gap between a similar set of gateposts and, for the first and only time in our tandem-riding experience, we took a tumble. It wasn’t a serious spill; we were going at a sedate pace and I took the brunt of the fall and managed to hold the falling bike against me so that Dylan more or less stayed on. But it had shocked him  and he had said ‘oops’ repeatedly as we made our way back to the cycle hire that day. Was that why Dylan seemed so nervous today? Was this now his overwhelming tandem memory?

Once I had made the connection I could sense Dylan’s agitation increasing as we approached the junctions to gated trails.  I made a point of dismounting and pushing the tandem through instead of riding. Slowing to dismount in good time seemed to calm Dylan.  Stopping for a picnic also seemed to help 🙂   Dylan wasn’t completely restored though; he wanted to return the tandem after we had eaten rather than head off again. I persisted gently, building in lots of choice and stops at junctions as well as a detour to look at a ford in the road which Dylan hadn’t encountered before.

 

Transpennine Trail, 2015

Transpennine Trail, 2015

I wouldn’t say Dylan was at ease on the tandem but he was certainly more relaxed. ‘Shall we head back’ I said to Dylan, thinking I should end the day while it was good, ‘and have a drink in the cafe?’ At the cycle hire people were returning their bikes in good time. One family walked by with a trike triggering me to exclaim: ‘Look Dylan – a trike like the one you rode with [naming staff at his residential setting]’. Dylan pulled away anxiously, covering his ears and moaning.  ‘It’s alright’, I reassured him, ‘we’re not hiring one now. Mummy was just remembering something’ (I have been working on ‘remember’ with Dylan recently).

I had been astonished, last summer, when a photo of Dylan on a trike pinged into my inbox. I knew cycling on the Transpennine trail was on Dylan’s programme for that day but I’d expected him to be on the back of a tandem. I hadn’t ever hired a trike because, as far as I was concerned, it wasn’t balancing that was the issue for Dylan but being in sole control.  I had spent years riding tandem with Dylan because I thought he couldn’t steer or brake. Had I got things so wrong?  I was delighted at this apparent development but somewhat incredulous. Later I discovered that shortly after the photo was taken Dylan had steered the trike off the trail and taken a tumble.  Twice.  ‘Why wasn’t he on a tandem?’ I asked. Apparently the staff supporting Dylan that day didn’t feel confident enough to ride one.  While I understood this, I didn’t understand the decision to hire a trike instead: ‘Do you want to leave the cycling for now’ I said to the care home manager ‘and I’ll take Dylan at weekends instead’.

Except I hadn’t managed it since, I thought to myself, as we handed our helmets back to the cycle hire.  Dylan was pulling at me, wanting to get away from the trike: ‘Oops’ he said:  ‘oops, oops’. Could this be what he was remembering as well? Not just the spill from the tandem but the tumble from the trike? Dylan dislikes falling; if his previous two experiences of cycling had involved a fall, no wonder he had been reluctant. I was reminded, once again, of how powerful Dylan’s memory is but also of how quickly he loses confidence.  ‘There’s a saying’, I said to Dylan as we sat with our drinks in the cafe, ‘that when you fall off a bike you get back on again. Well done today.  We’ll come back again soon’.

Dinosaurs Or Trampolines: hearing Dylan’s voice

happy sad 008Dylan doesn’t have much language and the speech he does use is mostly echolalic. For years Dylan repeated the last bit of my daily greeting ‘Good morning Dylan how are you?’ until the other day when, out of the blue, instead of ‘how you’ he said ‘OK’. It is thought that echolalia may have a functional role in speech development; perhaps the thousands of echoed replies were a rehearsal for the morning Dylan would have the confidence and understanding to answer.

For many autistic people open-ended questions are problematic; without a frame, forming an appropriate response can provoke anxiety. Close-ended questions help but even structured choice can pose difficulties for children and adults whose speech is echolalic.

Dylan which hoodie do you want to wear, this one [pointing to black] or that one [pointing to grey]?

‘at one

Dylan do you want to wear this one [now pointing to grey] or that one [now pointing at black]?

‘at one

Because I know that Dylan tends to identify the last thing he is offered I test the reliability of his choices. It is, of course, possible that Dylan genuinely prefers the last item; in this situation there is a happy coincidence between his echolalia and desire. At other times, however, what Dylan says is not necessarily what he means.

You don’t need to be autistic of course to select the last option presented; I once had a boss who appeared to only ever adopt the position put last in meetings. Those of us who had spotted this weakness would try to secure the final appointment in her diary before she was due to take a decision we wanted to influence. In another job, working for a research organisation, a manager disliked a questionnaire item I had designed asking survey respondents to select three items from a longer list. They would, she said, simply choose the first or last options; could I please re-design it so respondents had to consider all options before deciding.

A voice

Recently I’ve been asking myself how I can involve Dylan in decisions about his future in a way that allows him to express considered rather than echolalic choices. Although his communication and capacity are limited it is important to me to try and give Dylan a voice. This can, however, be tricky. During Dylan’s transition from school, for example, I involved Dylan in a planning meeting. Dylan’s teacher had designed an activity which asked him to express likes and dislikes by sorting rebus symbols onto ‘happy’ and ‘sad’ pages; the aim was that I would take account of these when writing Dylan’s support plan.

support planning 001The intention may have been good but it wasn’t particularly successful. Although Dylan joined us only for the end of the meeting it was still disruptive, taking him away from his usual schedule. As far as Dylan was concerned, I ought not to have even been in the school. The meeting was in a formal and unfamiliar room and although Dylan knew most of the people around the table it was stressful for him. I had brought juice and biscuits to make the situation more relaxed but this probably didn’t help as he focused on those rather than the activity. As Dylan half-heartedly sorted out the rebus symbols I realised that he probably didn’t know what he was doing there or why.

Later, when I put together Dylan’s support plan, I included the symbols but noted that they ‘contained some surprising choices’. I knew that it wasn’t the case that Dylan didn’t like DVDs for example. I was also fairly confident that he liked books and (with some provisos) music. I had involved Dylan in the process but perhaps not in a way which allowed him to participate meaningfully. If I were to offer Dylan choice again, I told myself, I needed to figure out how to give Dylan his voice, rather than a voice.

A choice

The transition from school was pretty awful for Dylan. Wrangles over funding and provision (which you can read about here) meant I was unable to prepare Dylan for what would happen next much less involve him in the process: with all the uncertainty I had no choices to offer him. Dylan struggles with change and feels loss deeply;  the impact on him of this badly-managed transition has been profound (I have reflected more on this here). Eighteen months later, changes in Dylan’s behaviour and support needs mean he is now being assessed for residential care.

It is impossible to know whether Dylan would still be the happy and stable young man he was at the end of his school years had he been provided with an appropriate placement on leaving education. What is certain, however, is that Dylan’s transition from school included none of the things which help him and many of the things which cause him distress. Leaving home will be the most significant transition Dylan has faced yet and I know he will need much better support this time. Explaining the process to Dylan will be crucial but it is also important that I find a meaningful way of offering Dylan choices about his future. If I am to do more than pay lip service to this I need to think hard about how Dylan can be involved in decisions.

Dinosaurs and Trampolines

happy sad 001Enabling Dylan to find his voice in the process will be complex. I’m not sure I’ve managed to find my own voice yet actually; I am still flailing around, trying different positions and hoping to arrive at one that feels comfortable. If this is such a difficult decision for me, how much harder will it be for Dylan, whose life it is?  In a previous post I described how, while making visits to settings prior to Dylan leaving school, I realised I’d been choosing for myself rather than for Dylan. Since then I’ve tried to remember that the things I prioritise will not be the same as Dylan. It is probably also the case that the things I find hard about the process are not the same as the things about it which Dylan will find difficult.

I realised recently that something which probably isn’t helpful is involving Dylan in visits to multiple settings; more than two places seems to overwhelm him and provoke an echolalic choice. Making an initial selection before offering a choice is therefore sensible and also rules out the possibility of Dylan selecting a setting which is unsuitable or unavailable. This week therefore I whittled potential providers down to two. I decided to get a sense of Dylan’s response to both settings (one of which he had visited previously) and to record this process. Because of the possibility of Dylan making an echolalic choice what I didn’t want to do was show him photos and ask whether he likes ‘this one or that one’; observations of Dylan while visiting the settings, I decided, would be of more value than him choosing between pictures following a visit.

To help with this I asked someone who knows Dylan to join us on visits to the two providers; not having to supervise and manage the visit alone would allow a closer focus on Dylan. I wasn’t surprised when Dylan homed in on things which weren’t on my list of priorities; he was delighted to discover that the setting he hadn’t visited before had a trampoline in the garden and he remembered, with delight, that the setting we were re-visiting had a Disney mural and Dinosaur DVD. Whatever the choice between the two settings hinged on for me, for Dylan it was dinosaurs and trampolines.

His Choice

happy sad 002Although I’d resolved not to offer Dylan a ‘this one, that one’ choice the prospectuses were side-by-side on my desk that evening. Dylan looked intently at both of them and hovered with his pointy finger before (unprompted) saying decisively: ‘at one. This seemed to be a considered choice – I’d watched his eyes flick between prospectuses before delivering his verdict – but I couldn’t help checking: ‘at one he said again, ‘at one.

I hadn’t presented the settings to Dylan as places he might live (or, to put it another way, as part of leaving home). I think that this is too abstract for Dylan to consider and wouldn’t be helpful. The choice Dylan made was therefore not ‘I would like to live there’ but ‘I like that place’. My idea is that, for Dylan, this is how we must proceed; first expressing an interest in a setting and only later introducing the idea of it as a potential home. This is the mirror-image of the usual decision-making process whereby someone would decide to leave home then look for somewhere to live.

There is a way to go yet but this week’s visits felt helpful. I have started making a book to record the process for Dylan; the idea is to not only involve him in decisions but to evidence this so that Dylan feels some ownership of the choices. This record of Dylan’s journey will, I hope, become part of his preparation for transition. I’ve chosen a physical artefact because Dylan likes books but a video diary would also work well. Whatever the format, recording rites of passage is an ancient practice which, for millennia, has been used by human beings to locate themselves in relation to each other and within a community. I hope that such an approach helps Dylan to make sense of, and a choice about, the next stage of his life.

Time

happy sad 009Something which I need in order to do this is time. During the summer the changes in Dylan’s behaviour were so dramatic that the situation presented as crisis; with challenging episodes daily, the priority was keeping me safe and ensuring Dylan had the level of support he needed. It is difficult to involve a young person when they are distressed and I visited providers in haste so that a quick decision could be made. It is only because Dylan is calmer at the moment that I have been able to delay making a decision while I try to involve him in the process.

My neighbour, who works in the sector, asked me yesterday how Dylan was doing. Oh he’s a bit more settled at the moment, I replied. I told him that on good days I doubted the need for Dylan to leave home. Don’t make that mistake, he advised. The most difficult transitions he had witnessed were those which happened in crisis: You want Dylan to move when he is well so that people get to know him at his best and can see his full potential. For the good of everyone the process should happen when Dylan seemed least in need he said.

I am hoping this period of calm continues long enough for me to hear Dylan’s voice. So much provision seems to be about crisis management that I suspect we don’t often achieve this. During our visits this week, though, I heard a heartening tale. Revisiting the house with the Disney mural I discovered there was actually no longer a vacancy. Apparently the young woman who had been expected to move would be staying after all. Her funding authority, which had planned to place her elsewhere, had offered her a choice; she had expressed a preference to remain where she was and the authority (a different one to ours) had respected her decision. Although I was disappointed that there wasn’t a place for Dylan the story gave me hope that, if I support Dylan to make choices now, one day in the future his view could tip the balance.

The Best Words In Their Best Order: language and autism

Living with an adult who doesn’t use speech to communicate means that I spend a lot of time thinking about language. People often remark on the irony of a poet having a ‘non-verbal’ son but I have come to realise there are more connections between Dylan and myself than differences, not least in our approach to language. How can that be when words are a writer’s currency and Dylan has so few?

The Language Barrier

NPG 192; Samuel Taylor Coleridge by Peter Vandyke

Samuel Taylor Coleridge

Poets, it seems to me, are as interested in the way that words fail as in the way they work. When poets write it is from a place of agony. Language is inadequate. We make faltering choices and wrong turns. We cannot find the exact description for the light outside a window. We fail to find a way of distinguishing one feeling from another. Constantly we delete, discard, begin again. Our quest is for the ‘best words in their best order’ (Coleridge, 1827). No word should be wanted or wasted. We will work a piece over and over to find the ‘truth and beauty’ (Keats, 1820). Even then, some poets consider their entire oeuvre to be no more than work in progress. This difficult search for the right word is a process which my son also knows.

NPG 58; John Keats by Joseph Severn

John Keats

Poets vary in the time they spend writing but I cannot engage in it for more than a few hours. I find the experience mentally and physically exhausting. If I think about the agony of writing it helps me to understand why Dylan may choose silence. Consider how it might feel if communication were like this all the time. What if it is so difficult for Dylan to find the right words that ordering breakfast is as challenging as writing a poem? Or if he experiences the world in so many colours the words to differentiate between them don’t exist? If Dylan can hear sound above and below 20KHZ, how might he begin to utter a word? If his senses are flooded with stimuli, as some autistic people report, then is Dylan’s silence so surprising? It can be safer, sometimes, to say nothing at all (a state poets refer to as writer’s block). Language is only a representation of the world; words are at least one step removed from the phenomena they describe. As I have argued elsewhere, Dylan may experience the world more intensely and essentially than those of us who live behind the language barrier.

Three Writer’s Maxims

New Year's Day 2013 013Dylan does, however, need some strategies for communication and much of my time is spent trying to help Dylan to develop these. At the moment Dylan’s favoured methods are visual. Photographs approximate the thing that they represent most closely and communication can be reliable this way. I might use this photograph, for example, to explain a trip to The Old Horns. However, the specificity of the photograph also limits its usefulness. I couldn’t use the same photo to communicate that at some point today we’ll stop for a pint somewhere because ‘somewhere’ is general and can’t be photographed.

This reference to the general and the specific reminds me of three writers’ maxims, commonly used in creative writing workshops:.

  • The concrete not the abstract
  • The particular not the general
  • Show don’t tell

20130714_164902I know writers who get quite agitated about these maxims, arguing that poetry cannot be reduced to rules. I am aware that there are plenty of fine poems which break these rules. Subversive practice is, I know, often at the heart of the startlingly original. However as a starting point for writing poetry the maxims are not a bad framework to inform our choices about language.

I would, for example, urge a beginning writer not to use abstract nouns such as poverty or anxiety but to focus on concrete images to communicate these: show the poverty in the way she walks, I might say, or: don’t tell us he is worried; show it in the dart of his eyes. I would ask the writer for particular rather than general information: not music, but Bach’s Overture in D; not the pub, but The Waggon and Horses. Precisely which pub is the sort of detail that is important to Dylan too; he is particular, not general. Dylan is concrete, not abstract. Dylan shows me things, he does not tell. Dylan, I would argue, intuitively adopts a writerly approach.

Flipping The Maxims

Dylan cannot, however, live wholly in the particularity; he needs ways of thinking about pubs in general and of understanding abstract concepts such as love and fear. As a writer I spend my time supporting students to make their writing concrete and particular; realising that my work with Dylan must travel in the opposite direction can feel quite challenging.

Although Dylan hasn’t engaged with communication systems that have been offered to him in the past there have been recent indications that he may be more receptive. Dylan has moved, for example, from using only deictic gestures (pointing to request, declare or ‘share the world’) to copying my use of representational gestures such as mimicking drinking and driving (not at the same time of course). This is an important shift in that it signals Dylan’s developing awareness of communication and its uses (I have written about Dylan’s use of gesture  here and about his use of speech here).

Symbols and signs can offer a good staging post between the specificity of photographs and the abstractions of language. I used these with Dylan when he was younger but he wasn’t particularly responsive then. In due course my signing tailed off and, without regular practice, I forgot the signs I knew. I suspect that Dylan wasn’t ready for the introduction of symbolic language at the time, but his recent interest in representational gesture has encouraged me to try again. ‘An idea in the highest sense of that word’, Coleridge reminds us, ‘cannot be conveyed but by a symbol’ (Coleridge, 1817).

Fingerman

Makaton is a language programme based on British Sign Language which combines signs with symbols and speech. In a previous post I’ve referred to the tendency of parents of autistic children to use gesture and facial expression so makaton feels like a natural and comfortable development for me. I’m hopeful that signing might be the next step for Dylan’s development in that it includes abstract concepts but makes these concrete by representing them through hand and finger pictures.

fingermanPractising signing recently I was reminded of one of my favourite movies, Stand and Deliver (1988). The film tells the true story of how a group of students at Garfield High, East Los Angeles, pass an AP Calculus test against the expectations of school and community, thanks to the dedication of their teacher Jaime Escalante. It is a wonderful movie which I’ve used for years with my students in order to explore key educational and social justice issues. It is also a marvellous source of examples of supporting the learning of students who aren’t used to succeeding and who lack confidence. Señor Escalante understands that his role is to give his students strategies for learning and that in Maths – like language, a subject of signs, symbols and abstraction – that means making learning concrete. One of the tricks Escalante offers his students is a method for calculating their Times Tables on their fingers; come on Fingerman, he says to one of his students who is hesitating to solve a problem: you can do it Fingerman.

I’ve been feeling a bit like Fingerman as I try to build signing into my everyday language practice. It’s early days yet but Dylan seems to enjoy watching me. Even if he doesn’t always attach meaning to the signs, I get the sense that he finds them pleasing aesthetically. This week I was signing the comment in Dylan’s link file, reading back what the care staff had reported about his day. As I signed, Dylan watched me intently, copying back my gestures. I was conscious of the dance of our hands through the air, drawing shapes and objects, describing actions and feelings. There was, I thought, a truth and beauty to our hands; they were searching for the best words in their best order.

 

References:

Samuel Taylor Coleridge (1817) Biographia Literaria
Samuel Taylor Coleridge (12th July 1827) Table Talk
John Keats (January 1820) Ode on a Grecian Urn
Ramón Menéndez (1988) Stand and Deliver


John Keats by Joseph Severn
oil on canvas, 1821-1823, dated 1821
National Portrait Gallery

Samuel Taylor Coleridge by Peter Vandyke
oil on canvas, dated 1795
National Portrait Gallery

My Trees Have Grown Hair: the poetry of autism

imagesCA2TGW0SWhen I gave birth to a son in 1994 there wasn’t any doubt in my mind what I would call him.  I had spent much of my life listening to Bob Dylan and reading poetry by Dylan Thomas; both Dylans had had a transformative influence on my life and naming my son after them was my homage.

_65423292_dylan304As a poet and a teacher I am immersed in words and communication; it’s also not surprising, then, that I named a child in honour of two men renowned for their artistry with language.  However, the irony of this is not lost on me: my son turned out not only to be autistic but to be one of the children on the spectrum who didn’t develop language and to whom the label ‘non-verbal’ was attached. ‘How did it feel’, I was asked by a radio presenter on whose show I was guest ‘to be a poet who named a son for poets and for the son not to speak?’

Dylan does now have sounds and a few words which he uses regularly and which, while not always clear, are familiar to people who know him.  These words have changed over the years. Some words go underground for a while then reappear later and sometimes  words disappear completely once an interest has passed. Dylan currently has a small but fairly stable core vocabulary which I’m hoping he will continue to use.  I try and remind myself that this vocabulary has only been developing for a relatively few years.  I remember exactly how old Dylan was when he first started trying to use speech because I wrote this poem about it (published in my second collection ‘The Bat Detector’).

Hair

Eight years old and at last my son
is trying to share the world, stumbling
from silence to the uncertainty of words.
Aaaarm, he tells me, over and over, his hands
circling my arm, fingers stroking the skin.
He discovers its newness again and again:
Aaarm, Aaarm.
I bend my arm at its hinge, push gently

into Dylan’s ribs:  Elbow I say.
It’s mummy’s elbow. Bibow he says, Bibow
then unbends it, lifts my arm high and pokes

my underarm:  Hair, he says, Hair.
Now he has me hanging on his every word,
waiting to find out what else he knows
(has always silently observed).
He looks up – points suddenly outside:
Hair, Hair he shouts. Good pointing I say,
good talking. But that’s a tree, Dylan – tree.
I take him by the hand, lead us to the garden

and reach to catch a waving branch of willow.
Leaves I tell him: Leaves. He strokes them,
gently: Hair, he says. Hair.

bth_WillowWhen I first read the poem at a poetry event a friend and fellow poet told me that he understood Dylan’s description; there was a particular tree outside his office window, he said, which he had always thought of as having hair. This is a way of sharing the world which has remained with Dylan; years later, every spring, he tells me that the trees have grown their hair.

Around the time I wrote ‘Hair’ I was reading the novel  ‘be my knife’ by Israeli writer David Grossman. One of the recurring themes in the novel is the idea that the acquisition of language is a process of loss – that by learning the label for something there is a sense in which we lose our understanding of it. So, for example, if I don’t have a word to describe the thing which you know as ‘blackbird’, in order to think about it I must observe it very closely – more intensely than if I could take the shortcut of naming it ‘blackbird’. Without language I must use my senses to engage with the world, and my experience of the world is therefore more embodied than if I had access to language. It is in this sense that acquiring language could be described as a process of loss. Here is one of the characters in the Grossman novel describing this sense of loss as their child learns to speak:

I don’t have to tell you of my joy when he began to speak; you probably remember the wonder of a child first naming things. Although every time he learned a new word…even his first word, a beautiful word like ‘light’ – my heart curdled around the edges, because I thought, Who knows what he is losing in this moment, how many infinite kinds of glamour he felt and saw, tasted and smelled, before he pressured them into this little box, ‘light’, with a ‘t’ at the end like a switch clicking off. (David Grossman, 2002, p.10)

Salix_alba_MortonSensory awareness in autism is well-documented. In some cases perception is so heightened as to cause discomfort, but where sensory engagement with the world is possible it can become a rich way of knowing for the autistic person. Every day I watch Dylan explore the world through his senses, sniffing, tasting and  stroking the things for which he has no name. I understand why the character in the Grossman novel might worry that being able to say the word ‘light’ may remove the child’s sensory engagement with the phenomenon of light. I remember thinking  that by giving Dylan the word ‘leaves’ I was destroying his more beautiful and poetic belief that this was the tree’s hair.

Understanding  the essence of something through our senses –  exploring the taste, smell and touch of  a thing – is a way of knowing familiar to poets. The senses are often the starting point of writing and frequently form the muscle of a poem.  A poet’s ability to write about something so the reader sees it fresh, as if for the first time, often comes from the poet’s use of their senses. In this respect, Dylan is a true poet.

*

Can I really claim that a ‘non-verbal’ autistic adult is a poet because he understands the world through his senses? How can my son’s approach to language measure up against a poet’s?  To explore this further I would have to identify what it is a poet does with language. A poet, I would suggest, is concerned with the musical and visual qualities of language. For me these are both essential;  the sound patterns that language makes (the rhythm and rhyme) are important but the pictures which it forms (the imagery) are equally important.  So let’s take these two uses of language – the creation of sound patterns and the drawing of pictures  – as the basis of a poet’s craft.  Against these criteria, is there poetry in autism?

In a previous post I noted that strong sound patterns in language (for example nursery rhyme and chant) support the development of speech in babies and toddlers and I reflected on the ways in which, as a ‘non-verbal’ adult, my son also responds to these.  Dylan’s enjoyment of the rhythm and rhyme in poetry and song is an appreciation as clear, I would hazard, as a poet’s. Perhaps it’s not so surprising that someone autistic and with limited (or no) speech  would respond to patterns in the sound of language in the way that a poet does.  But imagery?  Aren’t autistic people supposed to find metaphor confusing? Are we not constantly told, as parents and carers of autistic children, to ensure that our language is literal? That we should never use phrases such as ‘I was on fire’ to convey a state of high motivation or passion, for example, or ‘he laughed his head off’ to describe extreme hilarity. Really?  Well hadn’t someone better tell Dylan that trees grow leaves, not hair?

willow-treeWhile I appreciate that this might be different for others  I have come to believe that the world my son inhabits is largely metaphorical.  He doesn’t have a lot of speech, but the words Dylan does use to describe the world are often striking in their imagery. The trees that grow hair is an early and particularly striking example of his use of imagery, but there have been others over the years.  Once, as I served  pizza to him, he said:  ‘cheese crying’.  I was puzzled at the time, but made sense of the image later when he said it again as I was making cheese on toast.  I suppose if you are observing the scientific process of change in the state of a substance when it is heated, and you don’t have the word ‘melt’, then ‘crying’ is a pretty accurate (as well as imaginative) substitution.  The cheese has been crying!  How good is that? Well, better than this poet could do, that’s for sure. Whenever I melt cheese now I think to myself ‘now the cheese must cry’.

hair blog 006Another example of Dylan’s metaphors is from his much-loved ‘Beauty and the Beast’ story book. There is a picture of Beast which particularly interests Dylan. He points to Beast’s nose and says ‘po-tay’ (potato). When Dylan first started saying this I ignored him, thinking it random language. But one day I looked closely and could see exactly what he meant; while I would never have made the association myself, I can see that Beast’s nose does look just like someone stuck a potato on his face. I’d have been thrilled, when I was teaching English in school, if a pupil had described someone as having ‘a nose like a Jersey potato’.

And then there’s the ippy.  For many years Dylan would refer to ice cream as ‘ippy’.  We had no idea why but Dylan was so certain that ice cream was ‘ippy’ that we all started calling it ippy, until it had effectively been renamed within the family. Then, one day (while naming Snow White and the Seven Dwarfs) I realised that ‘ippy’ was Dylan’s pronunciation of ‘happy’. And so I had found another  metaphorical use of language by Dylan; a bowl of ice cream was a bowl of happiness. He didn’t know what ice cream was called, only the way it made him feel.  This is really quite sophisticated; ‘happiness’ is an abstract concept and therefore very difficult to describe. Poets spend their time trying to convert abstract nouns (such as greed, envy, happiness, love) into concrete images.  A poet would always try to avoid putting ‘happiness’ into a poem; instead, we would try to show happiness by embodying it in an object or action. If a pupil in school had given me a bowl of ice cream as an image for happiness I would have been thrilled. In fact, if I were still teaching poetry in school, I would take Dylan’s bowl of ippy and turn it into a fun activity for writing with children.  What’s in a bowl of excitement?  Orange jelly obviously!  A bowl of anxiety?  That could be spaghetti.  And what about a plate of jealousy?  Something green. Okra (slightly slimy ladies fingers)?

Another example: the car showroom we drive past sometimes which Dylan always points at and says ‘Fire’.  It took me many, many drive pasts before I realised that in the logo on the building Dylan could see the flames of a fire twisting and rising. In this example Dylan has made a metaphor from the visual appearance of something (the logo) rather than the way it makes him feel (the ice cream). Most of Dylan’s metaphors are based on his visual apprehension of the world:  the showroom of fire, Beast’s potato nose, the crying cheese and the hairy trees are all language-pictures which Dylan has drawn by making visual comparisons between different objects or phenomena.

*

Making comparisons and associations between two unconnected things is the basis of metaphor.  Poets make unusual connections between things in order to shake the ordinary into new shape and make the extraordinary tangible;  they help us to see and experience the world with fresh eyes. Making connections between things is also, however, one of the ways in which we order and make sense of the world.  Perhaps Dylan’s metaphors  are the result of his attempt to make sense of the world by grouping objects by their visual characteristics rather than by linguistic category?

Whether or not our brains order the world linguistically or visually has been linked to theories of brain lateralisation. At some point in the 1990s I discovered the book by Betty Edwards, ‘Drawing on the Right Side of the Brain’.  At the school I attended in the 1970s I was not allowed to take art beyond age 14; you could only enroll for the subject if your name was on a list pinned up in the school hall the week before subject choices were made. My name was not on the list. Now, as a lecturer in Education working with young adults hoping to become school teachers, I sometimes draw on my negative experience of art at school, and the impact on me of being told I couldn’t do it. I also tell my students, however, about the Betty Edwards book and how  it transformed the way I thought about art and my ability to draw.

Edwards’ thesis is that drawing requires us to get in touch with the right hemisphere of our brain, the part that is responsible for our perception of space and perspective. In order to draw well, we need to quieten down the left side of our brain which controls linguistic function, and which is constantly interfering with labels of things, rather than the thing itself.  Many of us are habituated to using the left hemisphere of our brains and when we look at the world we tend to see things by their names rather than by the space they occupy. So, for example, if I want to draw a good picture of a door I somehow have to suppress the left side of my brain from trying to label it (door, door frame, handle) and to draw on the right side of my brain in order to see the object that we use to move between rooms in terms of the space it occupies and the space surrounding it.

hair blog 004To illustrate this process and to encourage us to get in touch with the right rather than the left hemisphere of our brains when drawing, Betty Edwards includes exercises in her book which prevent us from seeing in language, and encourage us to see in terms of space.  One example is a requirement to copy a Picasso line drawing of Igor Stravinsky, but to copy it with the book upside down. With the picture the wrong way up it is not easy to make linguistic sense of the lines: you cannot work out ‘hand’ or ‘elbow’ or any of the component parts of the figure. In this situation, you are obliged to look closely at the lines and the relationship of the lines to each other, in order to reproduce the drawing in terms of perspective and space. Although skeptical I went ahead with the experience and was amazed at the result.  This was some years ago now and I have lost the drawing I made. However, I remember that it was a transforming moment for me:  from that point on I stopped thinking about myself as someone who could not draw. More importantly, however, it changed the way in which I looked at the world. After that, I tried to look at the world visually as well as linguistically, and to actively draw on my visual brain when working on a poem and searching for unusual images. Although I doubt I would ever arrive anywhere as fresh and unusual as some of Dylan’s metaphors, I like to think that I sometimes manage to turn down the interfering left hemisphere of my brain which would shout ‘leaf’ before the right hemisphere had seen ‘hair’.

Where this brings me to is a new way of thinking about poetry and autism. For all his lack of language and ‘impaired’ communication, Dylan is in many senses a true poet.  His heightened senses and apparent emphasis on right-brain rather than left-brain processes combine to produce a unique way of seeing the world. His vision is free of the social and linguistic categories we impose on what we see and which are imposed on us. When Dylan communicates what he sees, the images he offers are as startling and fresh as those of any poet.  There is a lot a poet could learn from Dylan’s use of metaphor and his engagement with the senses.  That’s Dylan Ariel. Not Bob or Thomas.

This slideshow requires JavaScript.

References:

Elizabeth Barrett (2005) ‘Hair’ in The Bat Detector, Wrecking Ball Press
Betty Edwards (1993) Drawing on the Right Side of the Brain, Harper Collins
David Grossman (2002) be my knife, Bloomsbury Press

Sources for willow images unknown but appreciated.

Afterword

Here is a link to a test which claims to assess your use of left and right hemispheres of the brain:

http://en.sommer-sommer.com/braintest/?data=NTMsNDc%3D

When I took the test myself the results suggested that I draw fairly equally on my left and right hemispheres, with a slight bias to the left side (53% left and 47% right). Quite a bit of the test can be done without language in that it requires responses to colour and pattern. I had the idea that Dylan might be able to do it so let him have a go. I only intervened to read the instructions for questions which required an action (e.g. ‘cross your arms’) and to observe Dylan and record the results. The results of Dylan’s test suggested a clear preference for the right hemisphere: 81% right side of the brain, only 19% left.

Of course this doesn’t ‘prove’ anything: the test could be unreliable; the conditions in which I administered it could be unfair; and Dylan’s capacity to engage with it could be limited. However, the results are broadly as I’d expect if some of the ideas I rehearsed in this post have any foundation.  Do take the test: it’s fun!

See also my post musing on left-handedness and autism here.

“I Said No”: re-thinking Dylan’s speech

On a visit to Tate Contemporary in Margate last summer I bought Dylan a badge in the Gallery shop.  Reproduced from a Tracey Emin piece, the “I said No” slogan appeared custom made for Dylan.  That holiday Dylan’s constant no-saying was beginning to wear me down.  I fastened it to Dylan’s t-shirt  that day hoping it would help me to a better humour.

Kent August 2012 013Dylan doesn’t have many words but “No” is a word he uses with confidence. I don’t think it was the first word Dylan ever spoke but, because he has so few clear words, it can sometimes feel like the only one.  There is something monumental about first words; indeed, they can become monuments. Soon after Dylan was born my mum reminded me of the baby books in which she and my dad had recorded my developmental milestones. Was I planning to keep such a book for Dylan she asked? With my new-kindled interest in baby behaviour I asked if I could see my own baby book. I was so surprised by what I found there I wrote the following poem (while Dylan was still a baby and before he was diagnosed autistic).

Gone
for Dylan Ariel

I am waiting for you to speak
as you sprawl, staring at the wooden gull above  my bed.
I tilt my head in your face, try my smile
and imagine you mouthing ‘wing’, ‘bird’, ‘fly’.

You draw your knees into a silent curl
then haul yourself to stand against the trembling wall,
throb your tongue against your lips and stumble on the rush of air.
I was you to speak my name, or claim your own, clear and full.

I remember finding my first word:
smoky cellophane crackled in my fingers as I unwrapped
the pages of a pink quilt book to discover father’s insect letters –
my ‘first smile’, ‘first steps’, creeping along their dotted lines.

And there I knew my whole life through a single word:  ‘Gone’.
Could my world, my all-gone world, have started there?
What did I know, in such few months, to name this loss?
I pull you to me, hold you tight, chant these words in your ear:

‘Here’,  ‘Now’,  ‘Yes’.

*
It’s ironic, I think, that the poem ends with a wish that one of my son’s first words is ‘Yes’,  given Dylan’s later use of the word ‘No’. However,  words aren’t always what they seem. When I discovered that the first word I had ever spoken was ‘Gone’ I asked some colleagues who specialise in child development what they made of it.  I had been aghast at the discovery of my first word. What had my parents been doing I wondered?  Why was it not ‘teddy’ or ‘milk’?  I remember being reassured by the explanation that at around nine months babies start to develop an understanding of ‘object permanence’ which is the knowledge that something continues to exist even when we can’t see it.  This is the stage when a baby moves from being absolutely distraught when a parent leaves the room (because they don’t realise they will return) to accepting this more easily because they know that the parent continues to exist somewhere else in the house.  So perhaps I was exploring the concept of object permanence when I spoke that  word  ‘Gone’?

I Said No 001What might Dylan be exploring with “No”?  I haven’t been unduly concerned about Dylan’s use of the word “No”;  he doesn’t use it in a punitive way to indicate reprimand, nor is he repeating language that he hears (I probably have to say “No” to Dylan less than I would to a ‘regular’ teenager). But why does he say it so often? One of the things I enjoy about keeping a blog is the way it encourages me to reflect on my relationship with Dylan – each post I’ve written has required me to think more closely about something in order to describe it. After writing about communicating with Dylan in my previous post I decided to keep a log of Dylan’s speech. I wasn’t sure what I’d find, but I was pretty certain that the word “No” would feature strongly.

So last Sunday I wrote down everything Dylan said from 9am when he got up until around 1.30pm.  I didn’t include vocalisations (his noises and babbles) but only what I considered to be attempts to communicate using language. I tried not to change my behaviour at all; I spoke to Dylan and tried to initiate verbal responses from him in the same way as I normally would, but not more often. In fact, there was probably less speech than usual during the time I was keeping the log because for an hour and a half we were at the Cinema.

Before I present the data from this ‘speech-shadowing’  I should perhaps say a little more about Dylan’s speech. As I’ve described in a previous post, Dylan is classed as ‘non-verbal’ in that he has very few recognisable words and no functional language.  “No” isn’t the only word Dylan says. From around eight years old he has been attempting to verbalise and has developed a system of words and sounds which people who know him can recognise.  However quite a lot of his speech is indistinct.  As well as the difficulty with communication resulting from his autism Dylan appears to have difficulty with the mechanics of speech. He often omits one of the syllables in a two syllable word (‘dinosaur’ is ‘saur’ for example) and certain consonants seem to be difficult for him. Quite a lot of words appear and then disappear. Some are brought back into circulation at a later date. Although Dylan’s core vocabulary bears little resemblance to that of a three year old (his words include ‘shave’ and ‘nettle’) in terms of number, clarity and reliability of use, Dylan’s stage of vocabulary development is probably akin to that of a toddler.

*

Log of Dylan’s speech: Sunday 15th September 2013

9.00-11.00:  at home, preparing to go out for a cinema trip                                

  • morn  [morning]  prompted response to my greeting
  • shtum [soap]  unprompted comment
  • loo [loo] repeating overheard speech
  • dra-he [dressing gown] commenting on what I am wearing
  • ca-he [candle]  showing me a picture in his book
  • ow [ow]  touching the candle flame in his book (copying an action I’ve modelled previously)
  • hair  [hair] asking for this to be washed
  • d-y-l-a-n [ n-a-l-y-d ] pointing to  letters on his door but not matching sound to letter correctly (reversed)
  • de-ya [ Dylan] saying his own name after touching letters
  • cin [cinema] checking that we will still be doing this  (pointing to bag as object of reference)
  • at one [that one] response to a question (which t-shirt?) with accompanying point
  • pu-pel [purple] echoing back my speech
  • The Queen [The Queen] unprompted in response to thoughts (no external prompt). Repeated.
  • oink oink [pig noises] unprompted response to thoughts
  • um-pi [Grumpy] response to thoughts (from Snow White)
  • at one [that one] response to a question (which hat) with accompanying physical selection
  • shoe [shoe] telling me he has it on, needs it fastened

11.00-1.30  journey to and from cinema, with 1.5  hour screening      

  • ding-a-ling [bell noise] unprompted response to thoughts (about his Chinese exercise bells). Repeated.
  • woof woof [dog noise] unprompted response to thoughts (no dogs to be seen)
  • shoe [shoe] unprompted repetition/memory (no function – doesn’t need anything)
  • er – sy [Earthsea] unprompted reference to a favourite film
  • ding-a-ling [bell noise] frequent unprompted response to thoughts
  • moo [moon] Passing Premier Inn (logo)
  • ni – ni [ night- night] response to my conversation about having stayed overnight at a Premier Inn.
  • no  [no] pointing at a cinema which we often go to but saying ‘no’ to indicate we are not going there today.
  • ger-wa [snow white] unprompted response to thoughts
  • no [no] checking directions – i.e. we are not going that way
  • a man [ a man] unprompted commenting (statue of Vulcan on the town hall). Repetitions.
  • ke [ quiet] anticipation of my language – when told in cinema about noise-making names target behaviour
  • laughs [laughs] appropriate laughter (at film), copying mine
  • no [no] to confirm that he can’t eat my banana
  • ba-loo [balloon] commenting on sequence in the film (accompanying point)
  • a man [ a man] unprompted comment on the Vulcan statue as it comes into view when we leave the cinema
  • no [no] checking route by disqualification (i.e. we are not going to stay in town)
  • hurray [hurray] repeating a word in my narrative summary of the film we have just seen  (‘hurray for crop-duster’)
  • no  [no] checking route by disqualification
  • big eyes [big eyes] unprompted commenting on his picture book (candle’s eyes I think)
  • po-tay [potato ] unprompted commenting on his picture book (actually Beast’s nose)

As a parent I found it fascinating to record Dylan’s speech in this way. Even without a background in language development I think it’s possible to make some useful observations from the data. Firstly, that’s quite a long list of words (or attempts at words) for someone who is ‘non-verbal’.  From the speech record it seems that Dylan doesn’t say “No” as much as I thought he did. When he does say it, it’s nearly always in order to clarify which route we are taking or what we are doing . So he is saying “No” in order to establish “so we are not going that way today then?” or “aren’t we going to the Showroom Cinema like we usually do?”. For Dylan, “No” seems to be more of a question:  “No?” Now I think about it, Dylan doesn’t do intonation in his voice, so his “No”  would never modulate upwards to “No?”.  So, all this time he has been asking me a question – and as that is an interactive process, inviting a response, I should be glad of his communicative intent (I am).

I have been aware that Dylan spends a lot of time figuring out what we are doing by elimination. When I’m driving I watch him in my rear view mirror; he pays close attention to the route, looking down the turnings we are not taking and sometimes, when I drive past a junction I might have chosen, saying “No”  – or rather “No?”   Much of Dylan’s life must be spent like a detective, piecing things together with clues and arriving at the answer through elimination. A lot of the time he must have something in his head that he’d quite like to do (that it would be nice to call at a pub for a drink, for example); quite often I intuit this, but I can see that when I don’t it is perfectly reasonable for Dylan to say something. Having done this speech collection exercise, I suspect that this is the function of Dylan’s “No?”.

I Said No 001As it happens I have been trying to address the issue raised by Dylan’s “No” recently by developing an i-pad as a communication tool; this not only helps me to explain to Dylan where we are going but allows Dylan to choose sometimes (more on this in a future blog). So I think I was aware that this was an issue – what the speech collection exercise has done has confirmed this for me. It has also challenged some assumptions I had about Dylan’s communication. For example I now think he makes more attempts to speak than I realised; that he tries two syllable words more often than I thought; and that his difficulty with some consonants and sounds is more significant than I imagined.  I can also see that some of his most verbal times are when he’s out and about (which he enjoys).

I have always known that Dylan has a rich interior life with thoughts, memories and imaginings, and the speech record confirms for me that he spends a lot of time, even when he is in company, thinking about his books, favourite characters from his films, and objects and memories he enjoys.  In my previous post about communication I mentioned that the pointing gesture which I particularly rejoice in is the one which ‘shares the world’ with me and in the record of Dylan’s speech I can see this tendency as well, with him commenting on familiar landmarks such as the Vulcan statue on Town Hall and the balloons in the film. There is also evidence of imaginative play (pretend burning of his fingers on the candle flame in his book) and socially-appropriate behaviour (returning my greeting and showing awareness of appropriate behaviour in the cinema). The exercise, then, has illustrated to me what Dylan is already achieving, and is capable of, rather than any deficit.

Collecting this limited record of Dylan’s speech has given me a lot to think about. If I had a background in language development then presumably it could help me identify some targets for developing Dylan’s communication and plan some interventions. Isn’t this the sort of support which autistic children and adults should be receiving? Dylan had access to speech and language therapy while he was at school but I suspect the support was more often directed at groups of learners (and their class teachers) than at individuals. Surely it isn’t too much to ask that some resource is directed to support the communication of autistic adults beyond school?  That resource does not have to be intensive but it does need to be specialised. Parents, carers and support workers can take on development work but we need professional advice so that our interventions are not just sensible but informed. As I pointed out in my previous post, support with speech and language therapy is essential if adults with restricted speech such as Dylan are to function with some independence in the community and live fulfilled lives.

Reference:

Barrett, Elizabeth (1998) ‘Gone’ in Walking on Tiptoe, Staple First Editions

Tap Three Times: communicating without speech

owl babiesAlthough my 19 year old son is ‘non-verbal’ he takes an interest in a range of language-based activities. In describing Dylan as non-verbal I wouldn’t want to give the impression that he is silent; on the contrary he is very vocal. Few autistic people are completely ‘non-verbal’; most children and adults have some recognisable sounds which they use to communicate even if they tend not to use speech. It has been suggested that ‘restricted-verbal’ is a more accurate description than non-verbal. I’d say that’s a fair description of Dylan’s relationship with speech at the moment; he has a range of creative strategies which he uses pretty effectively in order to meet his needs and he enriches these with some limited verbal communication.

Any parent who has observed their child developing language will have witnessed the role of clapping, turn-taking, repetition, chanting and rhyme in the development of speech. As a poet, also, I know the power of language and the way in which these patterns can charm themselves into the brain.  We know that these are really helpful linguistic resources to offer babies and toddlers in the ‘pre-verbal’ stage so I’m not really surprised that the things which seem to trigger Dylan’s attempts at speech are picture books and songs with rhythm and rhyme.

Dylan’s current vocalisations include include ‘songs’ and calls, onomatopoeic sounds and a range of repetitions and habitual noises which are not unlike a baby’s babble. He left school last summer and at the moment I’m looking for an adult education placement so that specialist staff can continue to support Dylan to develop his communication.  Last week a ‘man from the council’ came with me to visit a potential provider. During the drive I explained to him why it was important that Dylan continued to access this sort of provision. My son, I pointed out, was showing signs that he was becoming more language-aware.  The developmental delay associated with Dylan’s learning disability and autism was significant but he was making progress and I was convinced he had potential for more.  “If you look into his eyes”  I said to the man from the council, “you can see how alert he is …

*

A memory.  It is the Easter following Dylan’s birth and on the first warm day of the year I have driven to Charleston House on the Sussex coast . Dylan is just over a month old and dressed in a blue striped suit and sun hat. I am sitting in the gardens with the baby beside me in the grass. Two sensibly-dressed middle-aged women walk past and glance at Dylan: “what an alert baby you have”, one of them exclaims, “you must talk to him a lot?” 

charleston

Charleston House, Sussex

Two years later, when Dylan was assessed for autism, I thought about the women at Charleston House. Perhaps the memory helped me to deny there was an issue with Dylan’s language development (even if I acknowledged his autistic behaviours). I thought my clever toddler was having a laugh. I remember one night whispering to him: “come on Dylan – I know you can talk – just one or two words –  that’s all  – just something to show you can.”  I was scared we were on an elevator that we wouldn’t get off; that Dylan would receive a forever label.

As it turned out the professionals involved in Dylan’s care were not keen on labels.  They weren’t useful, I was told, unless they helped to access resources.  So without any assumptions about Dylan’s language development (though with an ‘it looks like autism’ verdict) we joined early intervention groups with other families whose children were causing concern. I had given up on Penelope Leach’s ‘From Birth to Five’ at some point during Dylan’s first 18 months. The baby milestones she described seemed less and less relevant to Dylan and increasingly unhelpful. So when I discovered a network of parents accessing children’s services, they became my new reference point.

*

Parents  of children undergoing assessments for development delay compare their children with others in the same way that parents of ‘neurotypical’ children make comparisons at play dates.  This can be comforting, at least temporarily, as it helps establish a new norm; saying or hearing the words ‘oh my child doesn’t either’ makes your child part of a group and this sense of belonging, and of similarity instead of difference, is helpful. However, just as there can be peer-generated pressures among parents of mainstream children – whether a child can draw a recognisable human being by a certain age, count to 20 or write her own name for example – so there can be peer-generated pressures among parents of children with special needs.

Because these pressures almost always arise from a perception that access to resources are performance-driven and limited, they tend to create stress. On the run-up to Dylan reaching school age, I felt under pressure from a commonly-shared belief among parents (corroborated by some professionals at the time) that in order to secure a place at the sought-after local specialist school, Dylan had to be out of nappies and talking before he was five. Also difficult was the wisdom circulating that: ‘if your child isn’t talking by five he probably never will.’

Having established a ‘new norm’ it was hard to watch as other children who had appeared similar to Dylan became verbal and made progress in leaps and bounds.  But these developmental surges also gave me hope; if another child could undergo such apparent transformation, then so could mine. In time, however, I realised that Dylan had his own trajectory; he made progress, but it tended to be slower than other children. Dylan’s learning disability was far more significant than I’d imagined initially and, it transpired, his ‘communication impairment’ was severe.

*

Dylan was not talking by 5 years old and at 19 is still classed as ‘non-verbal’.  Although everyone with an autism diagnosis experiences difficulty with communication to some degree, the gap between the non-verbal and highly verbal adult can create a sense of it being a very wide spectrum indeed. Recently I was part of a small lobby group which met with Nick Clegg  (my constituency MP) to discuss adult services for autistic people in my area. In order to raise  awareness of the spectrum nature of autism the group included myself (as a representative of someone who also has a learning disability and is ‘non-verbal’) and an able and articulate autistic woman. After the meeting  I was chatting about Dylan and must have used language sloppily as, at some point,  she quite rightly interrupted to remind me that while Dylan might not be verbal, it didn’t mean that he couldn’t communicate: “Someone with autism is communicating every time they get angry”, she told me.

Dylan doesn’t often get angry but he does sometimes get frustrated.  I think that this frustration is frequently at his failure to make himself understood – some of Dylan’s behaviour (such as standing jumps) is Dylan trying to communicate that communication isn’t working.  When communication between us does work it is often based on me intuiting what Dylan feels, needs or wants from his actions. At a very basic level Dylan uses ‘motoric communication’. This means that he uses my body as an extension of his own.  Dylan is adept at leading (or, if I am resisting, pushing and pulling) me to where he wants to be, or to show me what he wants. This usually involves him manipulating my right arm, but sometimes he uses my finger to indicate what he wants or to show me the help he needs. This is a mode of communication which Dylan has been using since he was a toddler and which I try to discourage now he is physically much stronger than me and capable of more sophisticated strategies.

Communicating with me through representations of an action, rather than through the action itself, is one such strategy. Dylan can recognise and use photographic and representational  images to communicate and is confident with rebus symbols, picture exchange systems, visual timetables and increasingly with communication software. Of course pictures are not always available but Dylan is good at improvising through ‘objects of reference’. If Dylan wants to walk he might bring his coat or shoes, for example, and he uses a particular backpack to request information about the daily schedule.  As well as actions, pictures and objects, Dylan sometimes uses gesture to communicate. Although he doesn’t sign, Dylan increasingly gesticulates with his hands and even at times shapes a point. There are different kinds of point; an ‘indicative point’ might be used in response to a question (‘Dylan which T-Shirt do you want to wear?) while a ‘declarative point’ is more of a statement than a response and important in that it can initiate communication. The point I am most interested in, however, is one which ‘shares the world’ with me; if Dylan points in order to show me something (a duck for example) then this is a high point of my day indeed.

*

A memory.  It is a winter morning and I am loading Dylan into the baby seat in the back of my car. He is around 20 months old. My new partner is hovering on the pavement to wave us off. I get into the driver’s seat and turn round to Dylan: “Look” I say pointing at the face in Dylan’s window, “wave bye bye”. Dylan looks blank. His arm lies limply in his lap, then he half-lifts it in a sloppy arc.  I think to myself it is hardly even  a wave…

I had noticed something important that morning. Within a few weeks of this memory, Dylan had lost his non-verbal communication completely and it would be many years before I saw him wave again. However, I remembered Dylan’s earlier use of gesture and had clear memories of him sitting on my lap pointing to things in his picture books and waving goodbye to people. Only very recently have these gestures started to return. Dylan’s new wave is fast and flappy but he uses it appropriately and knows what it means, and his indicative point – with a flamboyant final flourish – is increasingly reliable. He has also developed some gestures which are all his own; three taps on his chest or mine means ‘I love you’ for example…

owl babies 2Tapping three times on your chest is an action Dylan has based on a gesture I make when reading the last page of Waddell’s ‘Owl Babies’. In the story the mother owl returns after a night’s hunting to her three owlets and the smallest, ‘little Bill’, jumps up and down on his branch declaring: “I love my mummy”. Rather than bounce up and down while reading to Dylan, I developed the action of three taps on his chest and over the years Dylan has copied this gesture.

*

Increasingly I see in Dylan an awareness of his own limitations and difficulties. When he was younger I thought I saw this in his more able peers but felt that Dylan was to a large extent free of self-awareness and therefore of any sense of difference or failure.  Recently, as Dylan has made more attempts to communicate, I have noticed how disheartened and anxious he can become if I don’t understand him or respond positively. If he attempts a word I don’t recognise, for example, and I ask him to say it again, he will often retreat to a quite different but familiar word  – usually ‘The Queen’ (as in Snow White). Given the lack of clarity in Dylan’s speech and the individual nature of some of his gestures (such as tapping three times), establishing a system of communication with which Dylan can be understood in the community as well as (with luck and patience) the home, is surely worthwhile.

Any limitation on the effectiveness of Dylan’s communication probably has more to do with our inability to understand than with Dylan’s intent to communicate. Clearly, however, it would be ‘a good thing’ if Dylan could be helped to develop more speech as that would give him some independence in the community and increase his potential effectiveness as a member of society. I don’t know whether Dylan’s increasing interest in language will continue or not, but – as I explained to the ‘man from the council’  – I’m fairly certain there are things we could and should be doing to help. In England the policy on funding educational support for post-19 adults is in flux but the new 0-25 SEN code could potentially offer such an opportunity.