Small Steps Back, Big Leaps Forward

Picture1When I looked back in my diary last weekend I discovered it was exactly a year since Dylan went for his first night’s respite at the house where he now lives. Although he had spent occasional nights there during his time at a nearby National Autistic Society school, Dylan hadn’t had any contact with the setting since his transition to adult services. An escalation in ‘challenging behaviour’ after Dylan left school meant I had been unable to find a respite provider willing to accommodate him.  As Dylan had not therefore spent any time away from home for months,  it was with a mix of relief and trepidation that I dropped him off for an overnight stay a year ago.

I had spent over a year trying to identify a specialist provider able to support Dylan and after months of frustration and disappointment it seemed I had finally found the perfect place.  This felt like the last chance saloon though.  What if something went wrong and the key to the golden gate was withdrawn?  Reading last year’s diary entry reminded me of just how anxious I had been. I seem to have had two main concerns: whether staff would be able to keep themselves as well as Dylan safe if there was an incident and the potential  impact of the trial on Dylan’s proposed residential place.

If it is challenging and they see the full extent of D’s behaviours there could be a high risk situation… someone could get hurt and they could say  – I’m so sorry but we can’t possibly accommodate Dylan after all – we didn’t realise the extent of the CB.  So I need him to be good (but not too good). Well: breathe now, breathe. Try to relax. This is what I’ve been desperate for and needing. I have until tomorrow. Only tomorrow!!

Needless to say, that first overnight stay, and subsequent visits, went fine. There were some incidents but nothing the staff couldn’t handle or to cause concern. Dylan was just the sort of young man, the manager told me, their provision was aimed at. So he was  offered a place at the house and, as I commented to staff when I collected him last Saturday, his progress has been remarkable.  Dylan has settled well; he has developed some great relationships and seems to thoroughly enjoy his programme of activities. Although there are still incidents from time to time, Dylan’s anxiety levels are significantly reduced thanks to the specialist support he receives.

Dylan is doing so well in fact that he went away with staff on holiday at the beginning of this week. ‘I can hardly believe’, I said as I handed over Dylan’s trundle case at the weekend, ‘that it is only a year since Dylan’s first sleepover’.  If someone had told me, then, that just 12 months later Dylan would be doing this I would perhaps have breathed more easily. As Dylan hasn’t been on holiday without me before this is a significant step for him. It represents a pretty big leap for me too though. At the weekend I realised I had left Dylan’s suitcase for staff to pack without feeling the need to also provide a list of instructions and details of what Dylan should pack. This  didn’t so much as cross my mind:  I trust the staff to care for Dylan and accept I am no longer the only one who knows what he needs.

*

89a02f168afcaab595550196bc3871bbThe Log Cabin on the coast which Dylan’s care provider have rented is being shared across the week by the residents at the home. The young people take turns to have a couple of days away, one by themselves and one shared with another resident; Dylan was first to go on Monday morning and he was joined  the next day by another young man who took Dylan’s place in the cabin on Tuesday night.  Apparently Dylan had a lovely time and thoroughly enjoyed himself.

I say ‘apparently’ because I am, of course, dependent on reports from others. I did glimpse Dylan, briefly, on his return from the short break as ‘Facetime with mum’ was on his programme that evening. Facetime, however, hasn’t been very popular with Dylan recently.  The days of kissing the screen appear to be over.  In the last couple of weeks Dylan has clutched his ears, closed his eyes, moaned softly and walked out of view during our calls.  ‘We might want to step back a bit with Facetime’, I suggested to the activities coordinator: ‘Dylan doesn’t seem very comfortable’.

Parents and professionals will perhaps recognise this pattern of engagement and disengagement; Dylan quite often appears OK with something initially but then decides it’s not for him after all (and vice versa). This delayed reaction is typical for Dylan who, like many autistic children and adults, needs extra processing time for new experiences. Consequently, it can take a while for Dylan’s authentic response to a situation or activity to become clear. I should know this by now; my rejoicing about Facetime was almost certainly premature.

51b5dd798d9adbf39a1b93ded520d811So when I got an email last week asking whether I thought Dylan would like to join an early evening running group, and if so would I mind rearranging our Facetime session, I jumped at the suggestion.  Physical exercise is one of the best ways of involving Dylan in community activities and I loved the idea he could take part in a fun run with staff from the home and members of the public. That would be great, I replied, and no problem at all about the Facetime session.

When staff tried to do a ‘Programme Change’ , however, Dylan wasn’t happy. He pointed repeatedly to the Facetime icon, insisting it be reinstated. I was surprised by this, having convinced myself he wasn’t enjoying the sessions. Maybe in his own way he looked forward to them? Had I been too quick to make assumptions? How could I be sure Dylan’s behaviour meant he didn’t enjoy Facetime? So we decided to leave Dylan’s programme as it was and schedule the running to start this week instead. Come the Facetime session, however, it was a struggle to stay positive; you would never have guessed, from Dylan’s reaction, that he wanted it on his schedule.

c15611269b52da129a0117ce6b4065ddAs Facetime is fundamentally about communication maybe it is no surprise that Dylan should feel anxious. Although it is visual, Facetime still requires direct interaction in that it demands a face and assumes speech.  For Dylan, for whom eye contact and voices provoke anxiety, this is not ideal.  During one session, realising that Dylan was uncomfortable, I fell silent and started making simple actions: putting my tongue out, touching my nose, pulling a funny face. After a while I had Dylan’s attention.  Gradually he started to copy some of my actions. I heard Dylan’s support worker laughing at us (in a nice way). It felt a bit weird but it was probably the most relaxed I’ve seen Dylan on Facetime recently.

So I haven’t wanted to give up on  Facetime too quickly in case it is something we only need to tweak. Maybe we are scheduling it at an irritating time of day when Dylan is wanting to do something else? Or perhaps we need to move it to another area of the home where Dylan is less distracted? Maybe Dylan and I will develop a silent Facetime language. I would be sorry to lose Facetime as I find it more comfortable than the telephone. At the moment, therefore,  I am asking whoever is supporting Dylan to chat to me, rather than try to involve Dylan – perhaps watching from the sidelines will be enabling for Dylan. I’m not sure what will happen next.  Perhaps we’ll knock it on the head for a while. It feels like a step back, but only a small one.  And who knows – the running group could be a big stride forward.

*

‘I have to accept that there will be setbacks’, I told myself on Sunday as I sat alone in a cafe over a bowl of soup, wondering what to do with my unexpected free time.  The battery on my phone had inconveniently died so I couldn’t phone a friend to ask if I could visit or we could meet.  I tried to stay positive while I re-thought the rest of my day. Because, for the first time in the year since Dylan had moved to a residential home, which only the previous morning I had been rejoicing, I had telephoned staff to ask if I could return him earlier than scheduled.

9235c2ffd9004f1f6c76b96e9579c75bThere had been an incident and I had decided it probably best to abandon our planned activity.  So I had dropped Dylan off at the home before lunch on Sunday, rather than at the end of the day, and was pondering my next move from a nearby cafe. I’d probably been undone by my own hubris that morning, I reflected. I had been too relaxed.  I had taken my eye off the ball. I had forgotten that with Dylan I must be vigilant and prepared for the unexpected. It was good to be reminded of this, I told myself –  and lucky that it had been in such a safe environment.

I had taken Dylan to an Autism-Friendly screening of Angry Birds at an out of town multi-screen entertainment centre which Dylan has been to numerous times.  Dylan doesn’t need to go to inclusive screenings any more as he is a seasoned cinema goer and understands the routine. I like to support AF initiatives, however, and as the film was at a convenient time and location I had suggested to Dylan that we go before lunch out and an afternoon walk.

I had a relaxed swagger about me as I helped Dylan to use his CEA card to buy his ticket and queue for his salty popcorn and water. I bought a cup of coffee. I was aware of parents of young autistic children doing what I had needed to do with Dylan years ago: encouraging them into line; helping them to wait and to choose appropriately; supporting them through terrors and tears and mini meltdowns; picking up and carrying or patiently waiting. I probably let myself feel glad that my young man was quietly waiting to be served, behaving beautifully.

cd4c980c1b4e1978ed7fc085e53e708aAnd then it kicked off.  The film wasn’t in the cinema Dylan wanted it to be in (up the escalator). He became an Angry Bird. I saw, in the split second before Dylan did it, what was about to happen: backpack off, frog-jump as high as he could manage, popcorn falling everywhere, like snow, and then Dylan squirming in it, on the floor, yelling in anger.  The staff had clearly had autism awareness training and were prepared; they appeared with brushes and pans and a ‘hazard’ sign, asked me whether it had been sweet or salty (for  a replacement) and what they could best do to support me.

I said that Dylan could sweep it up himself – that it was important that he did – and that I wasn’t sure I wanted him to have replacement popcorn.  So, to the staff’s surprise, I got Dylan to help them clear up. Was there another way into the cinema I wondered? Could we go up the escalator and enter through a back door? But there wasn’t. I wasn’t convinced that I was going to get Dylan into the cinema but thought I would try again and agreed he could have more popcorn. When I told Dylan again, however, that the film was on the ground floor, he prepared to repeat the popcorn party trick. At the very  moment he bent his knees to propel himself into the air I slipped the carton out of his fingers. ‘I think we’ll leave’, I said to the member of staff, as  I escorted Dylan from the cinema, shouting and waving his arms, still pointing to the escalator.

Should I have let him go upstairs? Maybe. Perhaps he only wanted to ride it and would have come back downstairs for the film. I doubt it though. I suspect more likely is that he had a particular auditorium  in mind. I decided I couldn’t take the risk of letting Dylan head upstairs to find myself with a more difficult situation to manage on the mezzanine. Leaving the cinema, however, had made me feel sad;  going to a film together is something we have done for years and a shared activity I have loved. I couldn’t guarantee a film would be showing in a particular auditorium for Dylan.  Were our cinema trips in jeopardy? Was this something else to lose?

WP_20160607_005When I dropped Dylan off at his residential home a member of staff told me I had done exactly as they would by encouraging Dylan to sweep up the mess and then changing the activity. And, she suggested, I might not have to give up cinema trips altogether, just avoid the multi-screen  for a while. Still, I sat staring into my soup, feeling disappointed not just about the day but the  loss of future days. How could I possibly take Dylan to the cinema again, I wondered? It hadn’t occurred to me before that a trip to the cinema might be as much about the auditorium and environment as the film itself for Dylan. I searched through all my cinema memories, asking myself how many times we had been upstairs and how many downstairs. Which films had we watched in which auditorium? I knew Dylan usually headed for particular seats. Now I realised that this varied by auditorium; in one cinema it is row F on the far right, in another it is row A on the far left and in another it is the very back row, far left. Perhaps that morning Dylan had wanted to sit on a particular seat rather than in a particular auditorium?

So I sat turning things over, trying to figure them out. But then I remembered my old diary entry. Instead of staring into my soup, I told myself, I should be enjoying the time I had to myself. A year ago I would have done anything for a bit of space on a Sunday. In the scale of things this was a small step back, after all, not a significant loss.  I had a book of poems in my bag, waiting to be read. And then I would go and look for that laburnum tree I had promised myself…

*

The photographs of Dylan were taken by staff during his short break this week. I am really enjoying the laburnum tree which I planted outside my back door.

 

Kissing The Screen

speed cameraSo last week Dylan had Facetime scheduled on his programme on Tuesday and Thursday after his evening meal.  The icon looked like one of those warning signs for road traffic cameras I thought to myself.  I doubted I would be up to speed: I wasn’t even sure I’d created the accounts correctly. If something unexpected happened would I be able to sort it, I wondered?  Or would techno-anxiety get the better of me?

Even though the Facetime symbol didn’t mean anything to Dylan I was conscious that if it didn’t work he might be upset at not completing an activity that was on his programme. It was also likely that Dylan would be less than interested if we attempted to re-schedule (in the future) an activity that hadn’t impressed him the first time. No pressure then. It was with some nervousness I tapped the Facetime icon for the first time last Tuesday evening…

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assistiveware.com

Proloquo2go (assistiveware.com)

I had spent the previous Sunday restoring both ipads (Dylan’s old one and the new ipad mini) to their factory settings. I had decided that I wasn’t happy with Dylan’s favourite films being ‘in the cloud’ on the mini as he needs to access them without an internet connection (when travelling for example). I was also uncomfortable with the way the ipads were linked, allowing my personal data to be accessed (hypothetically) by Dylan’s support staff.

In the process of setting the ipads free of each other  Ariel’s Beginnings disappeared and some photographs were lost. Other than that, however, the restore was a success and I was able to load Dylan’s resources onto the mini. This clearing of the digital decks also encouraged me to think about how Dylan might use his new ipad in the future. I’ve been wanting to get Dylan a copy of the well-regarded communication software Proloquo2go for a while and, with my newfound confidence, last weekend felt as good a time as any. On a roll, I also subscribed Dylan to Disney Life, an app which allows him to watch any movie he wants as well as offering access to songs, books and games. While Dylan will only be able to use this with an internet connection it is potentially a good use of his pocket money, providing Dylan with on- as well as off-line access to new and familiar resources.

*

WP_20160517_006As Dylan didn’t understand what the Facetime symbol on his programme meant he didn’t have the fear I had but nor did he know what to expect. For our first session Dylan was in the corridor outside his room as if unsure where to locate this new activity on his mental map.  I wasn’t surprised – even with some awareness of what would happen I’d wondered where in the house to sit for our Facetime call.

Dylan was clutching his ears and moaning softly, something he does when encountering experiences for which he has no coordinates. I decided to wander around the house, hoping this would help Dylan see we were in real time.  Look Dylan, it’s raining in the garden.  This is what I’m going to cook tonight. The day bed arrived today – let me show you – here I am, walking up the stairs.  As I moved around the house, visiting various rooms, I could see Dylan peeking at the camera from time to time. When I got to the attic (where Dylan watches his old VHS videos when he comes to stay) he lifted his head and looked straight at me.  Good:  I had caught his interest 🙂

*

facetimeiconDylan finds the telephone distressing and computer activities can make him anxious if they involve audio. I knew, therefore, that I had to stay open to the possibility that Facetime might not work for him. Although Dylan’s glances at the camera during the first session were encouraging it was hard to know if he was comfortable; Dylan needs time to process new experiences and I didn’t want to make assumptions. Perhaps, I suggested to the staff supporting Dylan, I could have a conversation with them while Dylan watched?

This proved really useful as through it I discovered that Facetime is a great way to chat to staff even if Dylan doesn’t join in. I found it far richer than my daily telephone calls as I had so much more context information and therefore a better understanding of how Dylan was.  While I chatted to a member of staff, for example, I could hear Dylan in the background. Because I know Dylan’s vocalisations so well this gave me valuable information about how he was feeling and when to finish the call. Dylan kept drifting in and out of view, drawn by my voice and image, so as well as hearing him I was visually reassured that he was appropriately dressed and (apart from the ear clutching) at ease physically. This information was so much more powerful than any phone call.

When I waved goodbye to Dylan and tapped the icon closed I felt such relief and delight: it was like magic, almost a miracle. How could it be that I could see and talk to Dylan so simply, at the swipe of an icon? I walked around the house smiling:  even if Dylan decided he wasn’t interested in Facetime, I thought to myself, I could use it to chat to staff.

*

WP_20160517_004Dylan had a second Facetime session scheduled  for Thursday. After our first session I had emailed staff to say that I thought it had gone well but I would understand if Dylan didn’t want to do it again. I then tried to be as good as my word by not looking forward to our Thursday evening arrangement too much in case it didn’t happen.

Perhaps that’s why, this time, I signed in rather casually at the appointed time rather than ten minutes early, as I had before. Imagine, then,  my excitement when I found a message from Dylan to say he was waiting for me to do Facetime 🙂   This time Dylan was sitting downstairs in one of the resident lounges with E, his key worker.  I chatted with E about Dylan’s day and held up some things to show Dylan. Dylan seemed very relaxed next to E on the sofa and looked straight at the camera for a full 15 Facetime minutes. This is great, isn’t it? I said to them.

As I made to wrap up the session, aware that Dylan was getting itchy feet, I waved my hand and blew a kiss. Bye bye, I said, lovely to see you. See you on Saturday.  Dylan looked at me for a moment then suddenly all I could see were his features looming, getting closer – the top of his head first, as he stooped down towards me, then his eyes, nose and finally his mouth, kissing the screen.

Ears Are Really Useful Things

August 2014 046This is not the post I had intended to make this week but, as is often the case, something happened. Ears: I’ve mentioned these before as Dylan has a habit of trying to remove them (other people’s not his own) when he is anxious. I hadn’t realised until this week, however, how useful ears can be.

Dylan is strategic about ear attacks. He wraps his arm around the back of my head to prevent me from moving it then digs his nails into my ear from behind. This gives him purchase on it, allowing him to twist and pull as if to wrench the ear from my head. Quite often, the tip of my ear gets caught in the process. I try to keep Dylan’s fingernails short given this behaviour but even when just cut they are scratchy and often break an ear’s thin skin. My left ear usually comes off worse and has been infected a couple of times since the behaviour emerged a year ago.

wet leaf fall 007I cannot begin to describe how painful this is. There is something very delicate about the back of the ear where the fleshy part meets the skull. I try to keep my humour by calling myself Van Barrett and enjoying the opportunity the ear attacks afford for being creative with a scarf (bandage-style around my head). Sometimes the behaviour disappears for a while. Recently, for example, I have felt brave enough to wear earrings again and to not bother with a scarf. A couple of nights ago, however, I sustained a bad attack. Recording it in Dylan’s log before I went to bed, I noted it had been nearly a month since the previous incident. I have no idea why Dylan pulls ears but am increasingly of the view that there is no single trigger. I continue to think sugar may be implicated in this and I know that Dylan had some ‘banned’ items earlier in the week. I’m also persuaded, however, that the behaviour is a response to anxiety which, for Dylan, can have multiple causes.

This week’s incident happened at 9pm on Friday night. Dylan was in his room watching Thomas the Tank Engine and I was downstairs almost dosing through the Master Chef final. Suddenly things kicked off and the next hour was trauma and distress. When Dylan calmed, eventually, he wanted me to hold him tightly, putting pressure on his ears while he lay on the sofa. Once again I wondered whether his attacks on people’s ears are because his own are hurting. Dylan won’t let the GP near them to look but I made a mental note to myself to raise this, again, when Dylan sees the GP for his Cardiff Health Check in a couple of weeks.

Master Chef was still playing to itself. Dylan doesn’t usually watch TV but he is interested in food and the programme seemed to take his attention and soothe him. I needed to put TCP on my ears and arms but because of the smell of it I waited until I’d calmed Dylan enough to get him into his bath and bed. I could hear him shouting – not in a distressed way, but urgently and with a need – for long hours afterwards.

*

IMG_0029 (2)In some ways I wasn’t surprised by the incident. At last, I thought to myself, here it comes: the reaction. For the last two weeks Dylan has been transitioning into the residential home where he is to live. The transition plan is gentle but has still involved Dylan being away from home overnight more than he is used to. Dylan’s time has been divided between his day centre and residential home and as staff from both settings have joined up, people have appeared out of context. On days when Dylan has been at the residential setting, his usual routine has been interrupted. However much care you take, and whatever support you put in place, this is an unsettling time.

And yet so far Dylan has been calm. Everyone has commented on how well Dylan is coping. Alert and happy, he seems to be taking the changes and new experiences in his stride. Already he has achieved things I wouldn’t have contemplated: working in the community shop run by the residential home, for example, and riding solo on the TransPennine trail. When I was told that Dylan had ridden a trike I was alarmed; but Dylan always went on the back of a tandem when we cycled, I said. He doesn’t know how to steer and brake, I explained. The manager sent me this photograph in response: what more reassurance could I need than that smile? But even with Dylan’s achievements there will be anxiety and perhaps the incident this weekend was a sign of this.

books-etc-002Speaking of signs, these may have something to do with the ear attack. Signs (and symbols even more so) are important to Dylan. One of the things I did last year, at the height of Dylan’s anxiety, was to set up a weekly board at home. Although he had managed without one previously I thought it might help Dylan make sense of life which, at that point, followed a complex pattern. It was probably one of the best practical things I’ve done for Dylan. Since then we have established a bedtime routine of talking through what will happen the next day using the symbols. When Dylan removes the next day’s symbols from his board, it is a sign that he has understood the shape of tomorrow. When Dylan started attending his day centre full time and had clearer routines, he was able to put the symbols for the week on the board himself on Sunday evenings. This not only helped Dylan make sense of his week, it created a sense of participation and ownership.

July 15 transition 003Because of their importance in Dylan’s life I encouraged Dylan to take his symbols when he went to his new home for the first time a couple of weeks ago. That week Dylan was travelling between settings. Although he is usually very careful with his things, somehow the symbols went missing. I have hunted through pockets and bags and asked at Dylan’s day centre and residential home but they appear to have vanished completely. As well as symbols and pictures of activities I wasn’t sure Dylan recognised the symbol for, there were laminated photos of key people and places in Dylan’s life. Where, I wondered, was my photograph now? At least I will be smiling, still, I told myself.

While I’ve been trying to locate Dylan’s lost symbols he has been getting quietly agitated. ‘Lost it’ he had said to me earlier in the evening on the night of the ear attack. Standing in front of his empty board he drew circles in the air with his upturned palms (the makaton sign for ‘where’). ‘Lost it’. I made a note to myself: get some new symbols for Dylan. I can’t do this easily myself as I don’t have the necessary software. It’s expensive and parents tend to rely on schools and care settings to produce and laminate such resources. Actually, this has always been frustrating and unsatisfactory and if I had our time again I would probably invest in a widgets package, a photocopier, a guillotine and a laminating machine for the home (in fact I might do that yet).

Interestingly Dylan has added 'skating' on Friday (his usual routine) and some day of the week symbols (not correct order but a good attempt).

Dylan has added ‘skating’ on Friday (his usual activity) and some day symbols (not in the correct order but a good attempt).

After the ear incident I spent a restless night. There was a chance, I decided, that Dylan’s distress was linked to anxiety about the lost symbols as much as to transition itself. So the next morning I made some pictures I thought Dylan might accept as an interim measure: replacement photos and some pictures-for-symbols as well as internet-sourced photos of activities on his programme for the week ahead. The first sign that Dylan was stirring that morning was his voice up the stairs to the attic where I was cutting and sticking: ‘Lost it. Lost it.’ I showed him the pictures I had made. I thought I detected some tension leave Dylan’s body. I fastened the pictures to his board and talked him through his week. I saw him smile for Castle on Monday and Seaside on Friday. Perhaps, I told myself, this is all that was needed.

*

When I drove Dylan back to the care home that evening he announced ‘lost it’ as we drove up the drive. Once in the home Dylan took my hand and led me (and a care worker) confidently to the office, saying ‘symbol’. He clearly knew what he wanted and where they were kept. The care worker fetched a box of rebus and Dylan sat contentedly going through the symbols, picking out familiar ones and finding duplicates of some he had lost. I loved the way Dylan pored over the symbols, running them through his hands and pouncing on the ones he liked. It was, I thought to myself, the way I might browse a dictionary or thesaurus.

When I left him later Dylan still seemed a little troubled that he couldn’t find his lost symbols but appeared much happier. The care home are in the process of making Dylan a communication board and we showed this to Dylan, telling him it would be ready very soon. I’m not so naive as to think it will eliminate Dylan’s anxiety enough to stop the ear tearing; if this were the case it wouldn’t have been happening at home. However, not having symbols when you are going through a transition period must be awful. I would hate it if someone took my words away from me at such a time. So I’ve vowed not to leave Dylan without his symbols again, however briefly; I need to set up a portable as well as a fixed system so there is no risk of Dylan losing his only set.

I have a lingering anxiety though. What if Dylan isn’t referring to the symbols when he says ‘lost it’ but rather to what they represent? Might he be trying to communicate to me that he is anxious that he is losing his home and his mooey? What if he is telling me that he’s anxious about losing his day centre? The latter is, of course, the case: he is going to lose it. I have been wondering when and how and what to tell Dylan about the changes. Reluctant to trigger anxiety in him and create difficulties during transition, I have avoided telling Dylan what will happen beyond the day and week we are living. But if Dylan is using the term ‘lost it’ to express the loss of something more abstract than a two inch symbol, perhaps it is time for me to be brave too. On my list of things to do: produce that social story I’ve been writing for him in my head.

So although it was challenging Friday night’s ear attack led me to some useful learning. Firstly, I need to try again to get Dylan’s inner ear examined. Secondly, I learned something about communication: that Dylan’s symbols are important to him at a fundamental level and that he may actually be processing experience at a more sophisticated level than I realise. I need to sort out visual communication systems for Dylan as a matter or priority. But the incident was also useful in alerting WP_20150508_16_19_08_Prome to something entirely incidental. Recently I have been irritated by my spectacles which have felt increasingly uncomfortable. Twice I have visited my optician to complain that they are badly fitted and require adjustment. Both times the receptionists have politely fiddled with them for me in an effort to oblige. Last week when I complained again, however, the receptionist told me that she really could not see what the problem was: they were correctly fitted. Perhaps, she suggested, I just had to get used to them?

Bathing my ears in TCP this weekend I realised why my spectacles have felt so uncomfortable; the backs of my ears are chronically sore from the repeated attacks on them. The arms of my glasses, where they hook over my ears, must be pressing so as to create discomfort. I’m not sure what I can do about this but the realisation will, at least, stop me harassing the optician. And now I know that ears are really useful things: the thought that I need them for seeing as well as for hearing amuses me. Contact lenses would be a solution I suppose if I could bear the thought. I almost prefer the idea of a pince-nez or lorgnette. They would probably style well with a head scarf.

*

The piece I had planned to write (which I referred to in my previous post) is coming soon…

The Eyes

WP_20150518_19_49_08_ProPlanting sweet peas in my backyard recently I tried to remember how the occurrence of flower shades had led Mendel to explain the genetics of eye colour. Although I couldn’t recall the details, I had retained the basics from school biology. What I couldn’t remember, I realised, was the colour of Dylan’s father’s eyes – that detail I had airbrushed from my memory. But not brown, I assume, like mine: I must carry a recessive gene for sea-coloured eyes as Dylan’s are gooseberry-gray.

London Lions 005I love Dylan’s eyes: in some lights they are green and in others gray. There is no agreement about them. When Dylan was at school he would sometimes bring home worksheets describing pupils in his class: names, hair and eye colour. Each of Dylan’s teachers, it seemed, had a different view of Dylan’s eyes: one year his worksheet said blue; another teacher wrote ‘green’; yet another thought them gray. Sometimes it isn’t easy to tell what colour Dylan’s eyes are not because of the light but because, like many autistic people, he won’t let you look.

Madonna

eyes 001I watched Madonna being interviewed on The Jonathan Ross Show recently – or rather I listened as background to whatever else I was doing at the time. Ross is a skilful interviewer; he establishes connections with guests which make them feel safe and inclined to be open. As a result his interviews can drift like private conversations with neither party entirely in control of where they might end. When he interviewed Madonna, however, I found myself looking up at the screen increasingly often, puzzled by the flow of the conversation.

The interaction was not as fluid as usual. Ross seemed to be struggling to find a way in or make a connection; he couldn’t lure, tempt or tease his guest. And then it struck me; Madonna was refusing eye contact. Keeping her eyelids lowered while she listened and spoke – raising them only briefly to acknowledge a question or to signal she had no more to say – Madonna sidestepped or declined Ross’ attempts to connect. Her behaviour didn’t strike me as overtly sexual; she wasn’t avoiding eye contact to project herself as demure or to smoulder (à la Bacall). Rather it seemed self-protective; Madonna didn’t want to be vulnerable through the eyes.

J

eyes 002For ten years I watched one of my university tutors keep his eyes lowered. A brilliant historian and Bentham scholar, as well as teaching the political ideas strand of my undergraduate course J was my academic tutor. In that capacity we had regular contact and when I became a PhD student at the same college we maintained the relationship although he wasn’t my supervisor. This man was good to me; it is him I have to thank for a scholarship to the USA and other awards. As well as a mentor he was a father-figure and friend to me; he hired me as a babysitter, invited me to lunches at his lovely home and gave me the dressing downs I needed when I went off the rails.

In all these years I saw his eyes only a handful of times. He kept them firmly to the ground; usually fixed at a point just beyond my left shoulder. Sometimes, in the early days, I would glance behind me to see what it was he was looking at. Later I realised that this was simply how he lived. Before I understood, I would delight in trying to get him to look at me. With all the wild confidence of twenty I tried every trick I knew to make him lift his eyes to mine. I managed this only a handful of times. As I remember them his eyes were pale blue (and, I now realise, anxious).

A man I loved, a history man (let’s say a surrogate dad)
put his long noble legs, scholarly elsewhere-head,
into the ordinary mechanism of his undistinctive car
and drove to where no one would know. The car park
of The Runnymede Hotel is unremarkable but for this:
a meadow border with the Thames, the weir
and grit. The 200 yards of sting and cut it took
to walk, barefoot, to the water’s edge.

 

eyes 003The memory of that kind and clever man has stayed with me. That he averted his gaze is not the only thing I remember about him, of course, but it is one of the things I have thought about while parenting a child who also avoids eye contact. I don’t mean to suggest more than a fragile link between Dylan and this man; at first glance they have little in common. I find it helpful, however, to think about what connects people rather than to think about difference; if I consider the reasons why other people habitually avoid eye contact, perhaps this will help me to understand Dylan.

We all avert our eyes sometimes of course. Often it is to conform to social rules – not making eye contact on the underground or in public toilets for example. Children and adults with an Autistic Spectrum Condition are usually not aware of such protocol; Dylan sometimes stares in ways considered socially inappropriate just as he ‘inappropriately’ withholds eye contact. As his gaze is never (or rarely) a result of social convention, rule-governed eye contact cannot tell me much about Dylan’s experience; it is voluntary gaze-avoidance which interests me.

Some of us avoid eye contact when we aren’t telling the truth or are bored or disagree. Students sometimes look away from me so that I won’t ask them a question. I avert my eyes in impatience. My tutor, I told myself as a student, was probably shy. Recently, as Dylan’s behaviour has become more ‘challenging’, I have paid attention to the things which provoke anxiety. Even if I cannot identify a trigger, quite often I can gauge how anxious Dylan is through his eyes. It was when I realised this that I remembered J; on the handful of times he looked me in the eye, this is what I would have seen had I understood what I was looking at.

Dylan

eyes 004Though he does sometimes look at me when I speak to him, more often Dylan looks over my shoulder at a place not dissimilar to the point at which J would fix his eyes.  When he was very young Dylan rarely if ever made eye contact. It took me a while to realise that this did not mean Dylan didn’t notice things. On the contrary, he commits every detail of a situation to memory within minutes of entering a space; with a fleeting glance Dylan mentally ‘photographs’ an environment, noting each object and the relationship of objects to each other.

The speed and accuracy of Dylan’s observations is impressive; that he makes them while appearing not to look is extraordinary. As this seems to be a fairly common skill among autistic children and adults it is fair to assume that levels of eye contact are not linked to levels of observation. An artist friend once reminded me that we see with our brains, not with our eyes; Dylan’s brain is working so well in this respect he doesn’t need to look at something for long to understand it.

eyes 005As Dylan’s observational powers are so good I dismissed the possibility that they might be linked to his lack of eye contact. If something is working smoothly it is easy not to consider that it might also be part of a conundrum. Recently, however, there have been suggestions that autistic people may avoid eye contact precisely because of their observational powers. There is speculation (based on accounts from autistic people) that sustained eye contact is avoided because of the ability to see in so much detail. It is possible, perhaps, that autistic brains ‘over-see’; the sheer quantity of visual information bombarding the person is physically painful.

I don’t think it is about quantity of information alone; I suspect that for Dylan it is also about what he sees. I sometimes watch Dylan flinch or look away from my eyes after holding their gaze momentarily and I find myself wondering what it is he has seen. Is it my sadness? Did I give away, in my eyes, that I worry about his future? Or that sometimes I am scared? I think Dylan sees these things. Sometimes I think of this as his heightened empathy – a connection with me he has forged in the absence of language.

I find this surprising but plausible. Dylan appears to have a photographic gaze; if you combine this recording of visual information with an ability to ‘feel’, the potential for emotional overload is enormous. While we readily acknowledge that to be exposed is to be made vulnerable, we rarely consider the vulnerabilities of the person to whom information is revealed. Looking away can, perhaps, be a form of protection from seeing too much as well as from too much being seen (as in the case of Madonna). If eyes are the windows of the soul, imagine how it might feel to look through them.

The owls

eyes 006Dylan has always loved owls and my mum used to look out for any that might catch his eye. When he was around nine she bought him a set like Matryoshka dollies – one inside another and another and another, becoming smaller and smaller. This particular gift would get its eyes caught by Dylan however; within an hour he had systematically scratched them out. We could think of no reason why. Since then I’ve watched Dylan adopt other strategies with eyes that trouble him: a photograph of a friend he insists must be turned from view (‘eyes’ he says to me, pointing at them); a book of piano music with Beethoven on the cover which I continually find turned to face the stand. Some eyes, it seems, are too painful to contemplate.

The poet

Sometimes we encounter something which transforms the way we think. After years of being told to demand eye contact when interacting with Dylan I read something about a year ago which suggested the opposite; you don’t need to make eye contact, the article argued, in order to listen. Why then would you insist somebody looks at you when you speak to them? As I monitored my own behaviour I realised it is indeed the case that my ‘deep listening’ is never accompanied by eye-gaze. In meetings, when teaching or during private conversations I tend to look away if I need to think very hard about something. Maintaining eye contact actually distracts me from processing complex information; if I lock-on eye contact with someone I invariably stop listening to what they are saying.

Since reading that article I have radically changed my practice not just with Dylan but when teaching too. I no longer assume people are not listening if they are not looking at me and the only time I ask Dylan for eye contact is if I want to show him something (demonstrating an emotion with my face for example). Recently I have developed the habit of touching Dylan’s cheek with my finger if I would like him to look at me. The gesture reminds me of an encounter on a train years ago.

It was 1984 and I was travelling from Belfast to London via the overnight service between Stranraer and Euston, I found myself seated with a poet and a novelist. After a while I was seated with just the novelist as the poet spent his time wandering the train, drunk and a bit disruptive. Several times he was told by the guard to remain in his seat or he would be asked to leave the train; by Carlisle the situation had deteriorated and he was ordered off. I remember how troubled and vulnerable the poet seemed that night. I also remember his eyes averted, fixed to the carriage floor.

“Give me your hand”, his friend said to him softly: “give me your hand.”  This seemed to calm him and the two men sat holding hands. As the transport police arrived to escort the poet off the train he became distressed again: “Give me your foot”, his friend said to him, “give me your foot”. I looked on in astonishment at the man holding a hand and a foot; I had never seen communication like this before. What I witnessed that night, as well as a tender friendship between two men, was the intuitive action of someone who understood that eyes can sometimes see and feel too much.

Reference:

Extract from ‘Ways of Drowning’ in Elizabeth Barrett (2005) The Bat Detector. Wrecking Ball Press

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.

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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.

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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.