Autism And Inclusive Faith: Mozart and poppies

bbc.co.uk poppiesAlthough I’ve grown accustomed to not being able to do certain things, every so often frustration catches me out. I suppose other carers have something they dream of doing: clothes shopping, perhaps, or leisurely lunches. I can live without those as it happens.

If I find myself frustrated it is usually about an arts event; the exhibition I can’t get to or theatre production I must content myself with reviews of. At the moment my head is turned by Paul Cummins’ installation of 888, 246 handmade ceramic poppies at the Tower of London (not simply an ‘art event’ I know). A colleague who visited last weekend showed me pictures on her mobile phone; it was heaving, she told me.

I know that Dylan wouldn’t cope; I have only taken him to London once before and although it was a success it would be no preparation for thick crowds at the Tower. Besides, the poppies would have no meaning for him. Actually, that’s not the case: the poppies may not have the same historical and cultural relevance to Dylan as to me, but I cannot claim they would have no meaning for him.

Even so, I cannot contemplate a trip to London with Dylan, particularly with visitor numbers set to rise on the run up to Remembrance Day and given the anxiety Dylan has been experiencing in recent months. I have pored over my diary looking for a Dylan- and teaching-free slot long enough for me to get the train to London and back alone, but it’s no go.

Against forgetting

DSCF1549I had forgotten until yesterday that I took Dylan to a poppy service last year. Although I had edited this from my memory I have a habit which means I can never forget entirely. As a long-term diarist I have records which stretch back years. Something I have done for some time now is use the previous year as a touchstone for the one I am living. So as well as writing an entry for 11th November 2014, for example, I will look back to see how I lived on 11th November 2013. So yesterday morning I flicked back to see what Dylan and I were doing this time last year.

The poppy service we attended had been advertised as ‘inclusive’ but it wasn’t a success, at least not for us. In my diary account of the poppy service (which I reproduce below) you will hear the voice of the church leaders and people with learning disabilities as well as my own voice and that of an omniscient narrator.

Poppy (11/xi/13)

The dark circle, he said, is the evil in the world; the bad things which we do. He showed pictures of tanks and soldiers with guns. Cartoon characters squaring for a fight. Hurting each other. Making people cry. These are the evil things. This is the dark circle. Stand here in the middle of the room, M, and hold this black circle.

Now what are these? he asked. These petals of blood remind us of Jesus, he said; that he loves us all, even you shouting for WW3 and echoing back words. Even you with a blank look and the boy looking through books instead of paying attention. Even you he loves.

Now I see that you are not wearing your poppies. Come here and hold this one. Look at it. Don’t peel the back off yet. Hold it in your hand. Look at it. Those are tears of blood.

Who is this on the screen? ‘That is him! That’s him!’ one man cried.

A reading

2014-08-05 16.09.53In the above account Dylan is the boy looking through books; these were located at a distance from the group. Dylan’s exclusion was partly due to the lack of adjustments made to the service : the chairs were arranged formally and proceedings were conducted through spoken language, with the balance  towards instruction. Signed hymns and projected images were the only attempts to enrich communication.

It’s easy to be critical of course.  The church was working with what it had access to in terms of space, resources and expertise. Church leaders are attempting to meet a need in the community and the group may well be valued by its regular members. I suspect that it wasn’t really aimed at someone on the autistic spectrum and the issues I am raising may be more about that than inclusion generally. I’m pretty sure, however, that the things which would have engaged Dylan might have appealed to others too.

Making a giant poppy out of tissue paper. Rattling poppy seed pods. Music and movement as a field of poppies. Simple memory games. Remembering someone you loved. Saying thank you.

guardian poppiesIt appeared hard for the people there – adults with learning disabilities – to sit and listen. Surely we can bring active methodologies from schools and adult learning centres into an inclusive church? The concept of the sermon may underpin religious practice in many faiths but it is an approach which needs to be re-thought if we are to include people from across the community. Perhaps this is already happening in some places; I imagine churches may grow and adapt to the needs of autistic children whose families are already members (much in the way families themselves do).

My discomfort at the service Dylan and I attended was not just about methodology, however; I was as troubled by what was said as by how it was delivered. I found the focus on ‘good’ and ‘evil’ difficult, for example, and I was aghast at the images of toy soldiers. How might Dylan and others make sense of Toy Story’s role in this I wondered? The narrative offered made a dark connection with personal life; I was disturbed by the attempt to link ‘bullying’ (as an example of evil) with Remembrance Day. I watched people shift in their chairs; this ‘making concrete’ was, I suspected, painful and confusing for some people in the congregation.

Although there were questions, the concepts were complex. I felt uncomfortable that people with a learning disability were being set up to fail with questions they couldn’t answer; although I’m sure this was not the intention, it felt patronising. Am I reading too much into this? It’s possible. But I have learned to trust the intuitive judgements that Dylan makes and his reaction was to distance himself.

Inclusive faith

Inclusion is more than the arrangement of furniture or use of Makaton; it is about attitudes and philosophy. For me this means ensuring Dylan feels safe, that his needs are considered and that his ability to contribute is assumed. I think these are inter-related in that Dylan feels comfortable where he can sense he is valued and his confidence increases when he can engage. The inclusive poppy service which I took Dylan to last year was not as inclusive as I had hoped in this sense.

There was of course another, more literal, way in which the service wasn’t inclusive; it was a special event, aimed at people with learning disabilities. I am not uncomfortable with separate provision although I understand why some autistic people, parents and professionals argue against this. Dylan attended a National Autistic Society school until he was 19 and he flourished and was happy there; in my view this was the appropriate education setting for him. So I’m not averse to taking Dylan into a specialised setting if I think it might benefit him.

So why did I take Dylan to an inclusive service?  Because recently, as Dylan has moved into adulthood, I have been thinking about ways I can create circles of support around him. I want to help Dylan find his own place in the community, separate from and beyond his relationship with me. Although I am not a regular church goer now, I was as a child. I was aware while my children were growing up, therefore, of the absence from their lives of something which had been an important part of mine. Joining a church seemed to me to be something which Dylan might benefit from now and enjoy; a church community for people with learning disabilities would, I hoped, be a safe and enabling place where Dylan could feel valued.

Mozart

ulm 002Although Dylan didn’t attend services as a child he developed a special interest in churches. I think this is partly because of the acoustics and the effect of light through glass (I have written about this here). Dylan also seems to share with others on the spectrum a draughtsman’s perspective; architectural features such as stained glass windows, bells, steeples and gargoyles are among his special interests. Unfortunately, the church where the inclusive service was held did not have such features; perhaps Dylan buried his disappointment (having been told that we were ‘going to church’) in those books.

After I read last year’s diary entry, however, I remembered that we had once attended a service at a church with bells and a steeple. We were in Knaresborough for the weekend and were walking back to our hotel on Saturday evening when my attention was caught by a flyer advertising Eucharist at St John the Baptist the next morning. The setting was to be Mozart’s Coronation Mass, one of my favourite pieces.

Knaresborough 038I spent the rest of the evening thinking about the service. I couldn’t take Dylan, surely? I pondered the logistics and possible scenarios and outcomes. No. It was ridiculous. There was no way that Dylan would sit through the service. And yet I couldn’t bring myself to give up entirely on the idea. I went to sleep that night promising myself that I would do nothing to make it happen, but if Dylan woke on time, and we happened to be strolling by at 10.30am, and if the crowd didn’t appear too overwhelming and somebody smiled at us, and if there were two free seats at the back – well maybe.

And so it was that Dylan and I found ourselves next morning at the entrance of the church. As one of the  wardens welcomed us I explained, simply, about Dylan; he might shout out, I said, but we’ll leave if need be. ‘Oh Jesus won’t mind a bit of noise’, the blessed warden replied. ‘Though I suppose Mozart might’, she added, as we took our seats.

That is him! That’s him!

The service lasted two hours. I would never have imagined that Dylan could cope but he was brilliant; he stood and sat and stared upwards at the stained glass. I listened and sang and supervised. Afterwards, several members of the congregation made a point of welcoming and congratulating us as if realising the extent of our achievement.

Knaresborough 036I imagine that the attraction of churches for Dylan is to some extent their familiarity and dependability; he enters churches to search for something that he knows he will find. What Dylan took from the service at St John the Baptist, perhaps, was a sense of connection; as well as recognising features of church architecture, he witnessed community spirit. This process of recognition is, I think, part of belonging.

And now I remember that what redeemed last year’s poppy service was one man’s joyful shout of recognition: ‘that is him! That’s him!’. He had seen that face before and was comforted. It was, of course, the one who doesn’t mind a bit of noise.

Images:

Images of the poppy installation at the Tower of London are via the BBC (the Tower) and The Guardian (individual ceramic poppies).

The other photographs were taken by me outside the Church of St John the Baptist in Knaresborough, at Osborne House on the Isle of Wight (poppies with lavender), at the Yorkshire Sculpture Park (single poppy) and at my local allotment gardens. The architect’s drawing of Ulm Cathedral is a section from one of Dylan’s favourite pictures; it hangs in the corridor outside his bedroom and I often find him standing by it, looking intently.

A Fruit Shoot And Pastilles At 23,000 Feet: autism and air travel

The wind is rising – we must try to live (Valery)

Inverness 2014 048In my last post I mentioned that Dylan and I were about to take a railway tour in Scotland. I booked the holiday at new year when Dylan seemed a bit down; he’s not had an easy time since leaving school and it seemed to me he needed cheering up. Around that time, serendipitously, Dylan received a larger-than-usual payment from his father as the final settlement of a child maintenance arrangement.

It’s possible as the parent of a disabled child (particularly one in need of long term care) to spend time worrying about planning for the future. It would have been easy for me, then, to bank the windfall. However, conscious that I was acting for Dylan, I considered the question I periodically ask: What would Dylan be doing now if he wasn’t autistic? Dylan is 20. At his age, some young people might use an unexpected gift from a parent to clear their student loan or avoid getting into further debt. Others might spend a cash bonus on a second hand car. No doubt plenty of 20 year old’s would upgrade their phone or buy a new gadget. At 20, I reminded myself, I had spent every last penny I had on travel. It was likely, I decided, that Dylan would choose to spend rather than save the money he’d received.

It was relatively easy to identify what Dylan would spend his money on – while his material needs are simple Dylan loves holidays. The short break rail holiday in Scotland I decided on presented itself as suitable and perfectly formed: three iconic rail trips (including one across Harry Potter’s viaduct) and a funicular, coming in on budget for the right sort of duration at the right sort of time and location. When I booked the holiday I had already taken Dylan on day trips by steam train (which you can read about here). This slightly longer break promised to be an extension of what had already proved a winning formula. There were, however, some features of the holiday which would be different and could be challenging. In particular, I had made an impetuous adjustment to our travel arrangements which, once made, caused me some trepidation.

 A Bit of Stretch

Inverness 2014 002I have a habit of looking for opportunities to build ‘a bit of stretch’ into Dylan’s life. I have found that I can introduce new and potentially challenging experiences to Dylan providing I support these with some familiar routines and activities. Looking for ways of extending Dylan is good for two reasons. Firstly, if I don’t introduce new things to Dylan I am capping his potential for development and happiness. Secondly, the longer I leave it before introducing something, the more chance there is that Dylan will resist it when I do. When I booked the short break in Scotland it occurred to me that as Inverness, where our holiday would be based, was a relatively short distance from our local airport, it was a perfect opportunity to fly.

Flying might not seem like a big deal but for an autistic person it can involve significant preparation. Dylan had flown once before but he was only six at the time. Although he perhaps remembers his childhood trip, I wasn’t sure how much it was going to help Dylan. It seemed to me that Dylan may exhibit more anxiety about flying as an adult, particularly as he has developed a wariness of heights. Nonetheless I decided to try and build on his earlier experience as part of preparations.

Inverness 2014 001On the run-up to the holiday I showed Dylan a photograph of his previous flight, prepared some rebus symbols and taught Dylan the makaton sign for plane. It can be tricky to judge how much to share with Dylan and when to share it. I didn’t want lack of awareness to make Dylan anxious on the day but nor did I want to create anxiety with information he didn’t need. One day, out walking, an aeroplane passed overhead. I pointed to it then at the two of us and made the aeroplane sign. ‘Fall’, Dylan said looking at me anxiously.

I love these moments when Dylan demonstrates that he is capable of complex thinking; his awareness of the material world, I realised, had developed enough for him to question the possibility of flight. Dylan is right of course. During the trip I was reading Julian Barnes’ remarkable book Levels of Life. Barnes reminds us that early aeronautics was considered to be not just a ‘supreme emblem of modernity’ (along with photography and electricity) but a form of magic. In the beginning, Barnes writes: birds flew, and God made the birds. Angels flew, and God made the angels. Men and women had long legs and empty backs, and God had made them like that for a reason. (Barnes, 2014, p.11). But don’t worry, I told Dylan: we will not fall.

barnes 001It was good for me to focus on Dylan’s worries about the trip instead of on my own. One of my anxieties focused on luggage. Apart from the trip to the USA we have only taken holidays with Dylan by car. This is partly because private transport is flexible and allows a swift response to individual need. It is also, however, for the convenience of transporting the things required to maintain Dylan’s routines. I remember one holiday when we travelled with 12 cans of macaroni cheese in the boot of the car. We would often take a small TV set with us so that Dylan could watch his videos. Later a portable DVD player was a huge help – though Dylan insisted on travelling with large numbers of DVDs. Recently I’ve been trying to introduce an i-pad in order to travel light but with only limited success. How, I asked myself, was I going to manage the flight to Scotland?

Dylan, I realised, was going to have to accept that he couldn’t take his usual pile of books and DVDs with him. A few days before the holiday I decided that as well as taking fewer things Dylan would have to take responsibility for his own belongings. This, I thought, could be challenging. Dylan is physically able and stronger than I am so the issue was not the weight but his willingness to carry. There was also the issue of keeping his luggage with him (it was possible he’d abandon it) and, probably crucially, his awareness of other travellers. To encourage a sense of responsibility for his luggage I took Dylan to choose his own trundle case. I was surprised when he insisted on aubergine – not the colour I would have picked out and a good reminder that I don’t always know what Dylan likes. We spent two hours in the city centre practising walking with the case: abandoned once and rolled over twice but no scraped ankles. Fingers crossed for Manchester Airport.

 Lounges, Walkways and Yellow Lines

Inverness 2014 012

Arriving at Inverness Airport

Airports are not an ideal environment for autistic people: they are noisy and crowded, usually involve queues and waiting, may be subject to unplanned changes to schedule, and present sensory challenges particularly in relation to sound and touch. On the face of it, this is not an environment you’d enter unless you absolutely had to or the benefits far outweighed the costs. For us, this was exactly the point: in case Dylan ever needed to fly, I wanted to have done what I could to prepare him; if it turned out Dylan could cope – well that would open up a whole new world.

I know when Dylan is experiencing sensory challenge because he has developed a strategy for blocking. He scrunches his eyes up, twists his head to one side, towards the sky, and marches stiff-limbed past the source of disturbance. Sometimes Dylan blocks both ears with a single arm clamped over his head though he can do this, I think, for reasons other than sensory disturbance.

It was clear that Dylan experienced sensory disturbance in specific locations in the airport. However, it wasn’t where I would have predicted. The airport lounges were fine, as was the aeroplane itself. For Dylan, the problem areas were the connecting inside walkways (tube-shaped and clinical). The moving floors helped compensate; Dylan loved these enough to cope with the weird acoustic tunnels. Outdoor walkways at the airport, by contrast, were a huge hit. A yellow line on the floor to direct passengers between terminals was a massive help when covering the distance between the railway station and Terminal 3; Dylan understood and enjoyed walking the line which meant I didn’t need to guide him through a busy environment.

Inverness 2014 187

Checking Baggage at Inverness Airport (return trip)

I had booked a flight which left enough time for us to get to Inverness by train if Dylan wouldn’t board. Although our flight was at 9am on a weekday morning Terminal 3 was calm. This is no doubt because it is the domestic rather than international terminal. I’m sure this helped; introducing air travel on a short flight, via a local airport, was probably sensible. The other thing which helped was having alerted the airline (in this case Flybe) to the fact that I was travelling with a disabled passenger who may or may not board and who might need adjustments.

Although Flybe are a small budget airline I can’t fault their service and care. They were flexible about making adjustments, happy to take their lead from us and to respond to Dylan’s individual needs. Seat reservations and boarding priority were made for Dylan then adjusted in response to how well he was coping. At Manchester Airport, Flybe paged us to check that all was well when we didn’t present for early boarding. Sensitive adjustments were also made to customs checks; Dylan was given the time he needed to remove items for the scanner and allowed to carry his Thomas The Tank Engine book through the security arch. Everyone in the chain of customer service appeared to be aware of and expecting Dylan on the flight that day. This made an enormous difference to our feelings about the trip and thus to its success.

Inverness 2014 189

Dylan’s suitcase being loaded at Inverness

The trickiest moment? Undoubtedly baggage check. That aubergine trundle case turned out to be a big hit. So just why should I expect Dylan to let it go chugging along some rubber belt and topple off the end into the abyss? Would he let go of his new case with his favourite sneakers and hats in? After all my exhortations to him to ‘keep hold of your case Dylan’? Of course not.

I did, eventually, persuade Dylan to put his case on the conveyor belt though he wasn’t happy about it. The return journey, though, reminded me how quickly Dylan can learn; this time he checked-in his baggage like a pro. Inverness Airport is small and, again, the calm atmosphere was great for Dylan; while we were waiting to board I noticed Dylan’s little aubergine case being uploaded to the hold. Look Dylan, I said – there goes your case. But, already a nonchalant flyer, my boy wasn’t interested.

 Cloudland

Inverness 2014 010

After take off from Manchester

Written following the death of his partner, Barnes’ book The Levels of Life is a study of grief using the metaphor of flight. Tracing the early flights of pioneering balloonists, Barnes quotes Dr J.A. C. Charles, a physicist, who made the first ever ascent in a hydrogen balloon on 1st December 1783:

When I felt myself escaping from the earth, my reaction was not pleasure but happiness… It was a moral feeling, I could hear myself living, so to speak. (Barnes, 2014, p. 12)

As we lifted off from Manchester Airport, and gained height, I thought I could hear Dylan living, his face not just pleasure but happiness. ‘Snow?’ he said to me with the rising intonation in his voice I have noticed recently, and which suggests he understands the role and purpose of question. ‘Clouds’ I replied. ‘They look like snow. But they are clouds’.

Inverness 2014 011I don’t know whether Dylan knew the word ‘clouds’ before last week or if he had paid them much attention before. I like to think that they were part of Dr Charles’ moral feeling and that they also contributed to what the actress Sarah Bernhardt described, after her short balloon flight, as ‘not silence, but the shadow of silence’. This seemed to be an appropriate place for my son whose world is, if not completely silent, then one around which the shadows of silence have been thrown.

Barnes tells us that Bernhardt felt the balloon to be ‘the emblem of uttermost freedom’ and Felix Tournachon, another early aeronautist, referred to:

 the silent immensities of welcoming and beneficent space, where man cannot be reached by any human force or by any power of evil, and where he feels himself live as if for the first time. (Barnes, 2014, p. 13)

Inverness 2014 007

Manchester Airport

Although Dylan and I weren’t in a hot air balloon last week, we were in a smaller aeroplane than I had anticipated. I had been alarmed at Manchester airport to find that we were expected to walk across the tarmac to a plane which appeared to have propellers. Oh dear. In all the preparations for Dylan I had forgotten to remember that I did not enjoy flying. In the event it was me, not Dylan, who needed support. I had only ever flown in jumbo jets. This experience was quite different; I could see the cockpit and the pilot’s face and could feel every rush and tremble of air around us. For Dylan, this was marvellous, but while he was living as if for the first time, I was fretting as if it were my last. As we landed at Inverness I was the one clutching onto Dylan. ‘Whoops!’ he laughed at me. ‘Bump!’

Inverness 2014 192

Inverness to Manchester

Barnes tells us that on her flight in the Doña Sol in 1878 Sarah Bernhardt drank champagne from a silver goblet and ate tartines de foie gras and oranges. Fred Burnaby, meanwhile, is reported to have taken two beef sandwiches, a bottle of Apollinaris mineral water and a supply of cigars on his 1882 trip in The Eclipse. It was not, apparently, recorded what food Felix Tournachon and his travelling companions took with them on their trip in the ultimate balloon, The Giant, in 1863. I am able to report, however, that Dylan ate fruit pastilles and drank a fruit shoot during his 2014 flight from Inverness to Manchester.

In his book Levels of Life Barnes brings together ‘things that have not been put together before’ in order to show us how the world can be changed. Love, Barnes writes: ‘is the meeting point of truth and magic. Truth, as in photography; magic, as in ballooning’ (Barnes, 2014, p. 37). Dylan reminded me, throughout our time in the air, of the magic which is flight. Dylan’s world, I realised as I photographed the clouds, had been changed utterly.

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Aeroplanes are beautiful cursed dreams waiting for the sky to swallow them up (Hayao Miyazeki)

Reference:

 Julian Barnes, (2014) Levels of Life. Vintage

Autism And Landscape

…it appears to be a law that you cannot have a deep sympathy with both man and nature. Those qualities that bring you near to the one estrange you from the other… The mind that perceives clearly any natural beauty is in that instant withdrawn from human society.   Henry Thoreau

The word ‘landscape’ involves a human being unlike ‘land’ which is unpopulated. Landscape is something we create by looking; it is our perspective on the land and the meaning we make of it. Thus landscape poets and artists interact with a place when they write about or paint it and, through this interaction, they change land into landscape. Interaction with the land is something which is important to Dylan who I think is acutely aware of landscape.

In a previous post I described how Dylan takes his visual bearings from the landscape.Taking bearings from the landscape is not only a visual process however; Dylan also interacts with the land through touch. We have two sticks which we always carry on walks and Dylan uses these  to prod and probe anything unusual and as depth testers in rivers and waterfalls.  Dylan engages with the landscape through his other senses as well, listening and sniffing along the route. In another post I have described how as a toddler Dylan used to lie on the ground in the woods and speculated that this was for the physical sensation of leaves and soil on his back as well as for the sensation of light through the leaf canopy. Because Dylan experiences sensory disturbance, particularly aurally, I imagine the countryside to be a more comfortable environment for him than the city. Here there is less language and sounds are easier to discern; I  only rarely see Dylan put his fingers in his ears or clamp an arm over his head in order to block his ears as I see him do frequently in our city community.

I imagine the soundscape of the countryside is part of the landscape from which Dylan takes his bearings. I don’t think this process is something which is exclusive to Dylan or autism; I can also take bearings from landscape.  The poem below recounts an experience I had while driving through Missouri in 1981. I had been living in the US for a year and had not been missing England but that morning was overwhelmed by thoughts of home. Later I discovered that the rolling hills of Missouri were limestone, the same geology as the Peak District  where I grew up.  This, then, was the landscape of home and that morning its pull on me was enough to make me nauseous. The poem opens years later with me explaining limestone to my daughter while we are away from home.

Homestone

In Dorset I am explaining it is limestone,
like at home, makes the hills roll.
From a motorboat near Lulworth Cove
I show her how the soft cliffs fall
in pale curves to a lather of waves –
name her homestone in its litany
of Pennine, Portland, Purbeck, Chalk.

Though I am all the link with home
her four years needs or wants,
I know that one day, motherless,
she will need to recognise
the lift and fall of limestone land,
to understand the strength of stone
to make hearts sicken for loss of home.

Like when,  a continent ago,
I crossed America in a quest

to cast off the past, begin again.
How it happened then: the early morning
passing of the state line, radio playing,
land mist rising, the road rolling gently
through hills emerging, either side.

And how the lift and fall of lightness –
an unbearable nothing – weighed me
down. I stopped the car and stumbled
out – paced the edges of a roadside resting ground
(nauseous, breathless) – then paused
before an information board – tried,
distractedly, to make it sense.

And then the slake of a word.
So this was limestone – Missouri Limestone.
I scanned the names of other places it occurred
for news of home – some explanation
for the fissure in my heart’s stone.
*
Social interaction is largely linguistic and unpredictable, both things which Dylan finds challenging. When I try to imagine how it might feel to be Dylan I sometimes draw a parallel with language learning. There comes a point when I can understand some of what is said – enough to get the gist of things – and I have a bank of phrases which I have practiced and can use fairly reliably. But if a native speaker says something I am not expecting, or demands a response I haven’t prepared, I can be dumb-struck. This, I imagine, is how social discourse feels for Dylan much of the time. Even when he does manage to communicate successfully, or negotiate a social situation, the effort involved can leave Dylan exhausted. Perhaps, amidst this confusing and stressful social world, interaction with the landscape is a way of balancing yourself?

In previous posts I have suggested that the natural world can be more than just a touchstone for Dylan – it is therapeutic and a source of healing.  This very powerful interaction with the natural environment seems to involve specific landscape features for Dylan; rock formations and water are very important to him, but perhaps more than any other geological feature Dylan seems to take his bearings from trees. Some of my other posts have had trees in them: My Trees Have Grown Hair: the Poetry of Autism described the way in which Dylan’s engagement with trees supported his language development and in Walking Without a Map I included a poem (‘Petty Theft’) in which Dylan is shown seeking comfort from trees after a week of disruption at home.

As we walk through our local landscape, Dylan notices and remembers the trees we pass, taking his bearings from them and learning routes through the countryside by them. Trees are dependable; they are always in the same place and they change only slowly and in predictable ways. This is a process which Dylan and I have documented in relation to one tree by photographing it at different points of the year. I first photographed the tree in order to create a visual record of one of Dylan’s favourite walks but subsequently realised the tree looked different at different times of year so took more pictures.

*

Tree memories run deep. Last summer I took Dylan to a wood which we used to visit occasionally with my mum.  It had been ten or more years since we were there but  Dylan recognised every twist and turn and led me confidently to the trees he particularly wanted to revisit. Dylan’s closest relationships with trees involve a circular passage around them, a ritual dance or a hug (indicating increasing degrees of intimacy).

One wood we visit seems to cast a spell on Dylan. When we go there Dylan stands in the south west corner by a particular group of trees, staring out over a bordering field. He always goes to the same place, a part of the wood which feels magical when I am with Dylan. I call this Dylan’s ‘spirit wood’ and if I think Dylan is in need of calm I take him there. The photographs at the end of the post are of Dylan in this wood.

I often think that there are things I could learn from Dylan’s special relationship with nature and with trees in particular. I look to him, sometimes, to guide me to a more coherent way of living, or to find some stillness in a busy life. And, again, I regard Dylan’s special feeling for landscape as one of the blessings of silence; without language, he has been able to develop depths of experience which words can get in the way of. Some innovative autism providers are increasingly drawing on the natural world when developing relevant curricula and approaches to education and care. I am sure that for some autistic children and adults, and certainly for Dylan, landscape offers an enormous potential for learning.

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Reference:
Barrett, Elizabeth (2005) ‘Homestone’ in The Bat Detector, Wrecking Ball Press

Images:
All the photographs were taken by Liz. The photograph of Dylan with his sticks was taken in a meadow between Satron and Muker in the Yorkshire Dales. The featured image and photo of the signpost were taken on the Pennine Way between Hadraw and Hawes. The seasoned tree is in the Mayfield Valley. Dylan is tree-hugging in Lea Gardens in Matlock. Dylan’s spirit wood is near Limb Valley on the edge of the Peak District.

A Cathedral Of Light: autism and the sublime

caldeyNow the clocks have gone back an hour for the end of British Summer Time it’s dark when Dylan gets home from his day care centre. Last week I pointed to the early evening moon and commented to him on the changing light. I don’t need to tell Dylan that winter is on its way though; he’s acutely aware of the passing seasons and is probably already anticipating the rhythm and ritual of the solstice season.

Although Dylan isn’t very verbal and has a learning disability he has a system for measuring the passage of time. Dylan’s DVDs are matched to days of the week: Thursday is Lion King, Friday is Polar Express, Saturday morning is Earthsea. Thus Dylan counts the days and predicts what is coming next. The system isn’t without its challenges: how to build new films into an already-packed schedule, for example, and the management of this elaborate arrangement during holidays when routines collapse. Nonetheless, Dylan’s approach is pretty effective. As well as counting days of the week Dylan has an uncanny feel for the hour of day. I could virtually set the clocks by him. If we are at home during the day Dylan always comes to find me at 2.30, when he likes to walk, and in the evenings he asks me to help him get ready for bed at precisely the same time. Some of Dylan’s perfect timing no doubt arises from the routine and structure of his days, but there is more to it than this I think.

Dylan is intensely aware of changes in the light. In a previous post I described how as a toddler he used to sprawl on his back in woods in order to squint at light leaking through the leaf canopy. Dylan still enjoys the play of light through trees and also loves walking by rivers, reservoirs and the sea. The attraction of the latter, I believe, is due to the effect which weather and light have on water. In a poem Praisestones I describe how Dylan likes to throw stones into water.  His ‘sole aim’, I suggest in the poem:  ‘is to glory in shattering/the surface of water’:  Dylan, I write: ‘casts stones/to break the world into splinters of light’. In the poem, I invest a spiritual quality to Dylan’s casting of stones into water. The first stanza ends:

There is a reverence to this; how he hauls
the stones to water, holds them high
above his head, lifts his face to the light.
His ritual is hurl them hard and fast –
then the spread cross of his empty hands.
His face is rapture.  The water shouts Hossannah.

This awareness of the effect of light on landscape is, I believe, a spiritual experience for Dylan.  I sometimes think of his engagement with the natural world as a manifestation of The Sublime,  a phenomenon which Ruskin defined as ‘the effect of greatness upon the feelings’.  The elements which Dylan loves – water, earth, air – combine in the natural world to a sort of  ‘Cathedral of Light’ in which Dylan can feel a greatness. This is not something I see as exclusive to autism particularly; in a poem The Best That I Can Be I describe the way in which landscape can have a similar impact on me. The poem (a sestina) ends:

And this is my vespers, as the sun
sets upon me standing here. Over moor and down
the steepled sky echoes in song; the best
sparkles of stained glass – larkspur, pink
and tangerine – glitter above me
as I kneel under the corona’s display.

On this Sunday hill – bathed, refracted in pink
light – I am stripped down to heart. The sun wants me
and I am best that I can be, here, beneath the sun’s display.

The poem carries the following quote from Emerson as an epigraph:

Nature is loved by what is best in us. It is loved as the city of God, although, or rather because there is no citizen. The sunset is unlike anything that is underneath it. It wants man.

Brittany 13 221Dylan, I think, loves nature as the ‘city of God’. His relationship with the sun, though, is conducted through glass as well as the outdoors. For Dylan, one of the best places to observe light through glass is a cathedral or church, so while we are not church-goers,  we are regular church-visitors. If we pass a church while we are out Dylan always wants to go inside, and when we go on trips and holidays it invariably involves a cathedral visit.

On a number of occasions Dylan has been so affected by the manifestation of light through stained glass that he has appeared to enter a trance-like state. On a visit to Walsingham, Dylan became so absorbed by his experience that we struggled to get him out of the church.  I often think that at the heart of these experiences is light. Perhaps if the world you inhabit is silent the impact of weather and light on the senses is profound. The ‘effect of greatness upon the feelings’ which Ruskin found in nature, and referred to as ‘The Sublime’, may be great indeed if, like Dylan, you do not speak.

In the 13th and 14th centuries, orthodox Christians developed an approach to devotional worship based on the practice of silence which was known as ‘hesychasm’. While mystics had always been attracted by light as a metaphor, Hesychasm emphasised its role in the transfiguration. Gregory Palamas, one of the monks on Athos and an exponent of Hesychasm, believed that through Hesychastic prayer it was possible to reach a vision of ‘divine light’. In this, MacCulloch explains, Gregory was referring to the moment on Mount Tabor when Jesus’ disciples saw that his face ‘shone like the sun’ (MacCulloch, p.111). Who knows what visions Dylan may have had.

Lighteater

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

References:

Elizabeth Barrett (2005) ‘The Best That I Can Be’ in The Bat Detector, Wrecking Ball Press
Elizabeth Barrett (2007) ‘Praisestones’ in Walking on Tiptoe and Other Poems, Bluechrome Press
Elizabeth Barrett (2009) ‘Lighteater’ in Scintilla, Issue 13
Diarmaid MacCulloch (2013) Silence: A Christian History. Allen Lane

Images:

The photographs of light through cathedral windows are from some of our recent visits to churches and cathedrals in Kent, the Isle of Wight, Caldey Island, Wensleydale, St Malo and Carlisle. The photographs of Dylan were taken on the Norfolk Coast and at Walsingham (Easter 2010).