Family Lockdown: Dylan breaks the rules

In my last post I reflected on the challenge of caring for a vulnerable adult who lacks the capacity to understand  lockdown.  Dylan’s intellectual disability and autism mean that even in ‘normal’ times he engages in what could be considered socially inappropriate behaviour; in the context of a public health crisis, a lack of regard for social norms such as distancing can result in challenging rule breaks. In this post, I celebrate the fact that Dylan breaks the rules and rejoice in the unexpected places this can lead…

22^nd March, 2020 (Mothering Sunday, UK, Ireland)

To tell this story I have to go back to Mother’s Day which this year fell on the Sunday after the start of lockdown. Dylan and I had been celebrating his 26^th birthday in Durham the previous weekend but returned to the news that we were to stay at home other than to take exercise, shop for food, travel for essential work or provide care to vulnerable people. The trips and activities which had been scheduled for the week, and which Dylan was expecting to happen, could not go ahead.

While staff at Dylan’s home threw themselves into designing lockdown activities for the residents, I tried to think of alternative activities for the up-coming weekend. As I would be providing care to a vulnerable person I could still see Dylan, but our planned outing to Renishaw Hall was out of the question. This is an annual routine which helps me with Mothering Sunday, a day I have found difficult since my mother died in May 2006.  I enjoy receiving cards and gifts from my children but it doesn’t lessen the pain of not being able to see my own mother. In some ways it makes her absence more acute, now I am un-mothered.

Reservoir

Government guidelines allowed me to take Dylan for exercise somewhere local. I decided the best replacement for our cancelled trip was a reservoir walk, something Dylan enjoys and for which there are multiple options .  As I considered their relative merits, however, I realised that Dylan tends to associate reservoirs with pubs.  Agden and the Old Horns. Langsett and The Waggon & Horses. Underbank and the Mustard Pot. Redmires and The Three Merry Lads. Dale Dike and The Strines Inn. This could be problematic.

I set off driving along the road between Dylan’s residential setting and my home, along which the reservoirs are scattered. ‘Renishaw is closed today, Dylan’ I told him. ‘Let’s walk around a reservoir instead.’  I was still wondering which one when, at a bend in the road, I remembered Broomhead.  It isn’t a reservoir we visit, really.  We walked around it three summers ago for the first time in years. There are no routines associated with it and there is no pub nearby.  It also tends to be quieter than other reservoirs. Perfect for lockdown then.

I eyed Dylan through the rear-view mirror as I parked up. He was thinking about something I could tell, his face a blend of surprise and alert. Dylan and I set off walking anti-clockwise along the reservoir’s south bank. When we reached the cross-wall at the  reservoir end, where I expected Dylan to turn left and head back by the north bank, he chose to walk on. Here, Broomhead Reservoir trickles into Morehall Reservoir like a tear. As we more often walk around Morehall,  I assumed Dylan was hankering after a familiar landscape. There was probably enough time for us to walk around both reservoirs.  ‘Alright Dylan’, I said.

But to my surprise Dylan made a wedge-shaped turn and doubled back on himself to the road which runs between the reservoirs, separating their two tears. He must be crossing to the opposite bank to walk our usual clockwise direction around Morehall, I thought to myself. I quite liked the idea of walking a figure of 8. But rather than make a right turn when we got to the other bank, Dylan turned left.  So, he did want to walk around Broomhead?  I looked at Dylan. He had a glint in his eye. There was, I suddenly realised, something looming up ahead.

Matriarch

As Dylan strode purposefully up the road I thought of her. How could I not? This is where my sister used to live,  in a waterside house, off to the right, tucked in under ancient trees. Perhaps she still did?  I hadn’t had any contact with my sister since our mother died . Across those 14 years, the weight of silence had become too heavy to carry and too much to break.

Why? I don’t remember. The wrong word at the wrong time. A mistaken look. A misjudged silence.  ‘Something and nothing’, as my mother used to say to us when we squabbled as children.  The only thing I’m sure of, looking back, is that grief undoes people. It pulls the ground from under them. And it takes people in different ways at different rates. And in those desperate days we can say and do unthinking things.  It is a painful unravelling. A wild reeling. A terrible scrabbling while the earth tilts.

After, as the estranged days became weeks then months then years, I wished there was someone to help fix things. Someone who would have understood it was because we were hurting. Someone who could have supported us through our stubborn silence. Someone who would have helped us to heal. What do you do when that person has gone? I didn’t realise, while she was alive, how responsible she was for holding the family together.

Dylan Remembering

When Dylan and I walked this way, three summers before, I had been aware of his gaze on the house beneath the ancient trees. Perhaps he gestured at it in the questioning way he has. I don’t know because I had turned my face to the ground, tightened my hold on Dylan’s arm, hurried him along. I remember feeling overwhelmed and anxious. What if she saw us?

Today, Dylan is ahead of me, gathering pace. As we draw level with the house in the woods I call his name softly, hold out my arm. Dylan ignores me and I call him again, more urgently: ‘Dylan! Dylan!’.  But there is no stopping him this time. He is heading towards the house that he remembers. He is striding up the path at the side of the house, following the route he has always known. I call him more sharply: ‘Dylan!  Come back Dylan!’  But he has crossed the back yard and is heading for the door.

What is he remembering? Family gatherings on Boxing Day. Cakes and biscuits and orange juice.  An exercise bike in an upstairs room. A fire. Men with beards. His Gran. Watching films in a room with a big glass window. Escaping unnoticed upstairs while the big people talk and laugh.  Riding pillion with me on his uncle’s motorbike along the private track (probably especially that). Who knows what Dylan remembers of those days.

I pick up pace. I must hoick Dylan back to the reservoir path. I need to restore the day to normal. I want to shout but don’t want to attract attention.  ‘No, Dylan, no!’ I hiss at him.  But it is too late. He is opening the door.  Walking in.  Not even knocking!  Now he is in the house.  I am outside, utterly at sea.  Surely, it will swallow me?  I poke my head around the door pleading: ‘Dylan come back.’  But he is on his knees in a corner, browsing DVDs. ‘I’m so sorry’ I say, as my sister and her husband appear. ‘I’m so sorry’. She takes me by my hands, looks into my eyes. ‘It’s alright’, she says. ‘It’s alright. Don’t worry.’

 Healing Dylan

After 14 years it took Dylan to bring this reconciliation about. Only Dylan could have done this. It needed someone driven by feelings and desires – uninhibited by real or imagined hurts and slights, ungoverned by social rules or convention. After all these years of wondering whether a family wound could ever be healed and worrying that none of us would fix things, it was Dylan who made it better.

Bless Dylan. How I love that, in the end, it was this young man – whose autism and intellectual disability famously confer deficits of imagination, social understanding, empathy, cognitive capacity and communication – who brought this about. Blessings on my passionate, strong-willed, opportunistic son.

 

Breaking the Rules

As the first weekend we would be in lockdown happened to coincide with Mother’s Day, Government briefings had particularly noted that the rules meant no contact with families. After 14 years of having had no contact, Dylan and I stayed a couple of hours with my sister and her husband. We spent the time chatting and drinking tea. Dylan gazed at an architectural drawing of the Natural History Museum and lobbied for chocolate biscuits. By the time we left he had explored every room in the house and helped himself to four DVDs. On our way out of the door, unprompted, Dylan extended his arm to his aunt and uncle in turn, shook them by the hand. ‘We’ve broken every rule in the book today’, I observed.

As Dylan and I made our way back to the car I was conscious of a slackening inside, a different relaxed. The light was warm and honey-coloured.  We stopped once or twice and took photographs. Later, when I looked at the pictures on my phone, I was struck by the relief in my face.  I texted my sister. ‘I am smiling at the news on the radio not to see family today.’ ‘I think we can just about make an exception in this case’ she replied.  We marvelled at the circumstances that had reunited us and at the serendipity of it being Mother’s Day. ‘Mum will be smiling on us’, my sister reflected.

 

 

Since Mother’s Day, my sister and I have observed lockdown. We hope to meet again soon!

Daddy

I’m always amazed by the way Dylan intuitively grasps new technologies. Even with his learning disability he is a Digi kid, understanding (unlike his mother) that devices need to be swiped not clicked.

One of Dylan’s favourite things to do is scroll through the photos on my iPhone at breakneck speed (recent to oldest and back again) pausing only for a favourite image (York Cathedral) or to query a photo taken in his absence. These include the photos my daughter sends via WhatsApp which magically appear in my photo stream: ‘Sister! Sister!’ Dylan tells me when he encounters them.

I often imagine I hear sadness in Dylan’s voice as well as bewilderment. I tell him that ‘sister is at school’ which is the nearest I can get to an explanation for my daughter’s absence. It seems to satisfy Dylan in that he repeats it back to me: ‘Sister school’ is one of the few two-keyword utterances he produces regularly.

‘Daddy! Daddy!’

My ex-husband remarried recently and my daughter and her half-sister were bridesmaids. Swiping through my iPhone photos the weekend after the wedding, Dylan froze, his finger hovering mid-air over a photo of the three of them (sent by my daughter via WhatsApp): ‘Daddy!  Daddy!’ he shouted.  I didn’t know what to say. I don’t have photos of my ex-husband around the house and Dylan hasn’t had more than fleeting contact with him since we divorced 15 years ago. I thought my heart would break.

I should have realised. Although my ex-husband is not Dylan’s biological father he co-parented Dylan from six months old to ten years. My ex-husband (my daughter’s biological father) is the man Dylan knows as ‘Daddy’.  And I know from my own experience, and from what my daughter tells me of hers, that separation can have an enormous impact on a child.

I really should have realised. After all, I have just finished writing a book about the impact of divorce on a mother’s relationship with her daughter.  I have reflected on and written about the ways in which the end of my marriage affected my daughter. Why didn’t I consider that Dylan would also be affected by this? Because Dylan wasn’t able to talk to me about it I was able to ignore the weight of it? What else is Dylan carrying, I wonder? How much more lies underground?

Step Relationships

I think I knew really. I just didn’t want to admit it.  I’ve written before about the way Dylan finds emotional release through music. How he loves Sting’s Fields of Gold (which his Daddy used to dance him around the room to). How he can’t bear to listen to U2s All That You Can’t Leave Behind (the soundtrack to my divorce). And now I remember the way Dylan would look at me with questions in his eyes when his Daddy called to collect just his sister at weekends and holidays.

I remember my solicitor telling me, during divorce proceedings, that in her experience non-biological parents rarely claim access to a child following a divorce. While I didn’t think I had any grounds for claiming access to my step-daughter, I thought it might be different for my husband and Dylan. After all, my stepdaughter had a mother whereas my husband was the only daddy Dylan knew. They were, to all intents and purposes, ‘father and son’.

I was surprised my ex-husband didn’t want contact with Dylan after the divorce especially as he’d previously asked if he could adopt Dylan. Already aware the marriage was unravelling, I had said no to his request at the time.  Perhaps in this I considered my own best interests rather than Dylan’s? Maybe it would have been better for Dylan if I’d have said yes…

Long Lost Families

I might not have realised how hard being a parent is but Dylan’s biological father had been clear about this. He was not prepared to co-parent another child he told me (he had two from a previous marriage and had not found parenthood easy). If I continued with the pregnancy, I’d be on my own.

When a relationship ends we are careful to tell children it isn’t their fault and that the split is nothing to do with them. How would I explain things to Dylan when he was old enough to understand I asked myself, after he was born? Watching Long Lost Families I wondered how a searching child would feel if they found a father like Dylan’s, who didn’t want to be found.

Anxious about the future, I asked Dylan’s biological father to write something I could give to Dylan when he reached 18. When he refused, my patience ran out and I hacked into a display case of photographs at the college where we worked, replacing a professional shot of my ex- with something a little more personal. It was wrong (today we call this ‘revenge porn’) but it made me feel better. The photo I stole from the display case is lost. It doesn’t matter now. As it turned out, it wasn’t needed:  Dylan doesn’t have the capacity to understand his biological father’s absence.

Finding Daddy

The photo of my daughter and her half-sister at their dad’s wedding arrived on the day Dylan and I headed south for our annual summer holiday. This year I had booked a cottage on the coast, selected for its proximity to the things which Dylan loves: beaches, steam trains, country walks, rivers, castles and cathedrals. I didn’t subconsciously choose it (did I?) because it lay within spitting distance of the college where his biological father and I had worked.

If I had been taken by the idea of taking Dylan down memory lane I didn’t think about it while we were there. Even Dylan’s ‘Daddy! Daddy!’ cry didn’t bring that other daddy to mind in the week we stayed nearby. It wasn’t until the morning of our departure, when google maps directed us to an alternative route and I found myself driving past the college, that I thought about him. I cast a sidelong glance at the campus as I drove by. Then, from compulsion, did a u-turn and pulled into the college carpark.  Dylan looked at me quizzically. His script read: ‘next stop lunch’.  “Let’s have a walk before we get on the motorway, Dylan.” I said.

So Dylan and I spent a half hour strolling around the college grounds in the blossomy hum of summer. There were a few new buildings but the place felt eerily familiar. “That is where mummy used to work” I told Dylan, pointing at a red brick house.  “And here”, I added, “is where your daddy’s office was”. I photographed Dylan standing by the building, looking like his father.

It isn’t easy to talk about complex issues with someone with a learning disability, especially when they are ‘non-verbal’, and I have no idea how much Dylan understands of what I shared with him that day. But Dylan’s reaction to the photos on my iPhone had revealed how important family is to him, and how acutely he feels the loss of it, and I wanted to acknowledge Dylan’s emotional life by bringing his history out, into the open.

 

Selfie in the college car park…

 

 

 

 

 

Mother

Dylan missed being born on Mother’s Day, in 1994, by 21 minutes.  “Hurry up”, the midwife said to me towards the end of my 72 hour labour “or you won’t get a mother’s day baby.”  I wanted it to be over but I didn’t give a fig about Mother’s Day.  In more than 30 years,  I’d given my mother no more than a handful of cards to mark the day. I wasn’t the sort of person who cared about such things.

I care now I’m a mother myself of course. I love it when Dylan gives me a gift on Mother’s Day. This year, it was the most glorious bunch of roses: pink, lemon, cream, peach, apricot and white.  Yesterday (more than two weeks since Mother’s Day) I said to a member of staff at Dylan’s home: “the roses Dylan gave me have been amazing: I still have a few in a jug”.

As I threw the last stems out this morning I wished I’d given roses to my mum more often.

*

Dylan and I drove to Brighton on Mother’s Day to celebrate his 24th birthday.  We hadn’t been back since we left when Dylan was six months old but this year things fell auspiciously for a return visit to the town where he was born.

Firstly, Dylan has developed a passion for Premier Inns; an overnight stay in a different one, for his birthday, should go down a treat.  Secondly (by coincidence) it is the town where Dylan’s beloved ex-key worker now lives; if Dylan could meet up with E while we were there, that would be birthday happiness indeed.  And thirdly, my work commitments meant that (unusually) I could take a couple of days leave. For me it would be a welcome trip down memory lane; I wanted to find my old flat, by the sea, and piece together the life I’d lived.

This would be a joint and double celebration then: something for both of us.

*

What I hadn’t bargained for was my mother.  I didn’t connect her with the trip at all but as soon as we arrived I was ambushed by memories. Although she and I hadn’t been particularly close, mum stayed in Brighton with me after Dylan was born. This wasn’t planned; she had only meant to visit while her first grandchild made its arrival. But I didn’t have a clue how to look after the baby and when she realised this mum asked for leave from her job in a school so she could stay on for a couple of weeks.

Although mum and I hadn’t spent much time together previously we got along just fine. Full of tact and diplomacy, she was the ideal mother of the child’s mother. Her presence was empowering; she suggested ways of taking care of Dylan but always left it up to me to decide.  We had a lot of fun together taking the baby out for the first time and hanging out in my airy flat in the sky. I remember how she loved the sound of the gulls and the sea at the end of the avenue.

When the day came for her to leave I didn’t want her to go.

*

I had taken ‘Baby’s First Photo Album’ to Brighton hoping it might help me to explain to Dylan that we had once lived there.  I’m not sure Dylan understands that he is the baby in the photographs or, indeed, that he was once a baby himself. Babies hold a special terror for Dylan; he hates the sound of them crying and is made very anxious by their presence. So Dylan has not really been interested in looking at photo records of his early life.  Knowing Dylan’s interest in matching images, however, I thought he might pay attention if I could recreate the photographs while we were there.

So when we arrived at our Premier Inn, on Mother’s Day evening, I flicked through the album for a photo to take with us on a short walk along the seafront before dinner.  Surely I had a picture of the stretch between the town centre and Hove, where we had lived?  The ones I found were of Dylan’s first day at the beach; according to the inscription on the back he was one week old when mum and I took turns to push him along the front. “Look Dylan”, I said, “you and your Gran.”

This year, on Mother’s Day, I celebrated my mother and me, by the sea.

*

“I have become my mother” I said to my friend R over coffee next day.  I’d suggested meeting a poet friend and his partner for a walk while Dylan and I were in town. It was a cold, wet day and we’d retreated to a cafe for coffee and cake.  “I wear my hair longer than she kept hers but otherwise we look the same, right down to our coats of green”.  OK, mine is lime and hers was emerald. But even so…

Dylan was twitchy, asking when he would see E, so I kept him moving through the rainy day. But everywhere we went I found my mum; we rode the carousel and the ghost train on the pier and I remembered her with an ice cream, fending off a gull. In the Brighton Lanes I recalled her buying gifts to take back for a colleague and her Head. Even when Dylan and I went to ride the brand new i-360 (where mum could not possibly be) I heard her voice in my ear, telling me how much she loves this town, how comfortable she feels here.

And then, of course, she was waiting for us at my old flat.

*

“Smile, Dylan” I said.  “Let mummy take just one more”.  Dylan grimaced at me in the rain. I put my arms together and rocked them. “When you were a baby”,  I said, “this is where mummy and Dylan lived. Mummy and Dylan the baby lived here in this house”. I pointed up at my top floor flat. It looked shabbier than I remembered but just as lovely. “We were  very happy here”,  I told Dylan. “And your Gran stayed with us and helped mummy to look after you.”  Dylan tugged at me.  It was past lunch time…

The thing is (I thought to myself as we walked down the Western Road looking for somewhere Dylan- and vegan-friendly to eat) things were different then.  Were they? What was different? Actually, the place seemed remarkably unchanged.  I couldn’t find my beloved Sanctuary Cafe and the sea front had been tidied up a bit, but these were superficial changes. Other than the i-360, it was all pretty much as I remembered.  So what was the thing? I grew sad. The cafe I had decided would be OK had been awful. The rain was falling slantwise.  I was cold and exhausted.  I felt as old as my mother. “Mummy’s tired, Dylan”, I said. “Let’s go back to the hotel. You will see E later. I promise you.”

What was different, I realised, is that I didn’t know Dylan was autistic then.

*

Caring for Dylan is as natural, now, as breathing.  My mum taught me how to look after a new born baby and I learned, from Dylan, how to take care of my autistic son.  Our six months in Brighton, 24 years ago, seemed suddenly unreal; I had been in a bubble then, my eyes fixed on a thin blue line between sea and sky. Today, I couldn’t even see the horizon. I wanted to cry but I said “Dylan, let’s buy an umbrella then go and find E.”

By coincidence, it is E’s birthday as well as Dylan’s. In the pub where we have arranged to meet they exchange gifts. Dylan beams at the fiddle toys she gives him and gazes at her, unbelieving. Here is another thing for Dylan to process; just as he has a past, here, so E has a present. ‘Time’ is a difficult concept for Dylan and his birthday trip has been full of its knottiness. On the way back to our hotel afterwards, I find more knots: the number 7 bus passes the hospital where Dylan was born and where, four months later, he would spend a week on a drip, being treated for meningococcal  septicemia.

I push it out of my head:  some questions are too difficult to ask.

*

The next morning is the bluest of blues.  After breakfast we walk down to the beach.  The thin line at the edge of the world is so clear I imagine the ships could tumble off.  I watch Dylan throw stones into the sea. He concentrates hard on this for 40 minutes, testing the arc of his arm against the waves. I read some poems, try to make out the avenue where we lived, away in the distance. I think of mum and Dylan and feel part of a chain, a piece of their history.

“Let’s go back to the hotel and get our bags”, I say. “Then find a birthday cake to take home.”  There was almost a meltdown but I somehow managed to head off Dylan’s disappointment at not being able to strike out along the seafront, explore some more, and his intense frustration at the broken slush machine at the end of the pier.  As I steered Dylan away from potential triggers, and toward the sublime joy of a Rainbow Unicorn Cake, I realised Brighton was no longer my rinky-dink town;  the place belonged to Dylan too.

“But”, I said to Dylan as we left; “I am never staying in a Premier Inn again”.
*

It was a particularly grotty Premier Inn (though the staff were lovely).  I know Dylan adores this chain but I really think I have reached my limit. Suggestions for moving Dylan on to alternatives gratefully received 🙂

 

 

 

The Tandem Of Memory

Cornwall, 2008

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

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

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

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

 *

Norfolk, 2010

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

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

Monsal Trail, 2012

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

Derwent Water, 2014

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

 *

Clumber Park, 2015

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

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

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

 *

Weir Therapy

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

Time to read a couple of poems…

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

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

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

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

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

 

Transpennine Trail, 2015

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

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

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

The Ridiculously Heartbreaking Child’s Horse

It’s been a lovely spring day here so there were more people than usual, this afternoon, walking in the valley which runs behind my house. Dylan and I are regulars here; one of our city’s five rivers runs through the valley, providing Dylan with plenty of opportunities for leaning over bridges, leaping across stepping stones and staring transfixed at waterfalls.

Dylan usually steers a wide berth around passers by, especially dog owners, but today he strode purposefully towards a couple walking towards us. He stretched out his arm to shake the man’s hand and declared ‘Kwi’ (Chris). The man’s name was indeed Chris, it transpired, but how Dylan knew this we were unable to figure; Chris and I didn’t know each other nor did he recognise Dylan. ‘He’s been retired ten years as well’,  Chris’ partner observed.

Chris had worked in the special educational needs sector before retirement it turned out, at a school in the city which Dylan might have been allocated had he not attended a National Autistic Society school. I assume therefore that at some point Chris must have visited one of Dylan’s settings or been involved in a joint event. Perhaps he’d had passing contact with a group of pupils, one of whom was Dylan? While I wouldn’t expect Chris to remember Dylan from such a situation, Dylan would have logged the encounter in his memory.

‘Nice meeting you’ I shouted (wondering if I’d recognise them if I saw them again) as Dylan veered off up the valley.

*

Although Dylan has been walking the valley virtually all his life, since we lived close by he has developed fixed routines. Occasionally Dylan will adjust his route or add something new. Recently, for example, he decided we have to climb some steps and add a spur to the outward journey; I think this is so we can pass by three cottages Dylan has developed an interest in. I’m usually pleased when Dylan decides to change his routine but today I wasn’t sure his proposed adjustment could be considered a ‘development’.

Half way up the valley there is a cafe (featured in the Pulp song Wickerman) which Dylan used to visit as a child. In recent years we have continued on, to the top of the valley, where Dylan enjoys a drink in a country pub instead. When we reached the cafe today, however, Dylan was adamant we were going inside. While Dylan didn’t reject the food I ordered for him I could tell there was something else on his mind – some preoccupation I couldn’t fathom.

Then, as we were leaving, I realised what it was: Dylan wanted a ride on the rocking horse (the one Jarvis describes as ‘ridiculously heartbreaking’). ‘That’s for babies Dylan’ I said. ‘You’re too big’.  And:  ‘You’re a man now’  (making the beard sign). ‘You’re too heavy’, I said. But Dylan clung on. Dylan had loved this horse as a child but he hadn’t asked to ride it for years. What, I wondered, had triggered this request today? I should, I told myself, stick to the line I use about equipment aimed at younger children. Today, however, it felt inadequate: Dylan seemed to have a deep need to ride that horse. ‘Would it be OK’, I asked a member of staff, ‘if my son has a go on the horse?’

As the 20 pence tune started up and the horse began to rock, a look of sweet joy spread across Dylan’s face:

This evening it occurred to me that perhaps it was seeing ‘Kwi’ that triggered Dylan’s desire to ride the horse. Maybe he associated Chris with a particular period of his life during which this was something he did? Could the encounter have unlocked one of Dylan’s deep memories, building and re-building the connections he makes between people and things? Whatever the reason I’m glad that, on the eve of his 22nd birthday, I let Dylan ride the ridiculously heartbreaking child’s horse.

*

The youtube clip is of the Pulp song, Wickerman, set to narrative film shot in Sheffield by Stephen Woollen. The cafe and rocking horse can be seen at 3:39-4:14.

Dylan’s Life In Song: music and autism

One of the things that is striking about Dylan’s school reports is their lack of agreement about whether or not he likes music:

Dylan loves music; assembly causes Dylan distress; Dylan responds well to music; Dylan is not comfortable in music sessions; Dylan enjoys listening to CDs; Dylan covers his ears. 

In this post I speculate on the reasons for Dylan’s apparently contradictory response to music. I also discuss seven songs –  selected by Dylan –  and reflect on some ways in which these choices might help to illustrate his relationship with music.

Auditory hypersensitivity

In a previous post I have written about auditory sensitivity in autism and some of the therapeutic interventions which can be made. Dylan undoubtedly experiences auditory discomfort; he often clamps his right arm over his head, his upper arm held tightly against his right ear and a finger pushed into his left ear. This is canny: as Dylan is left handed it leaves his strong arm free to pull whoever is supporting him out of the situation causing him distress.

As well as being disturbed by a range of environmental sounds (children crying, dogs barking, motorbikes) it is possible that Dylan hears frequencies most of us cannot; the idea that Dylan hears in ultrasound underpins my poem sequence The Bat Detector, for example. I suspect that ‘deep’ background noise (such as heating systems, underground streams and sap through trees) is also audible to Dylan. Other autistic people have reported similar disturbance; some have posted clips on youtube which simulate this experience. Watching these videos is an uncomfortable experience and has helped me to comprehend just how powerful Dylan’s auditory disturbance may be. This hypersensitivity may, I suspect, explain both the pleasure and the pain which Dylan can find in music.

Music as discomfort: environmental noise

It is possible, I think, that this backdrop of environmental noise reduces the clarity of music in the same way that it interferes with Dylan’s processing of spoken language. Dylan may find music as uncomfortable as language in certain contexts (busy and open spaces, such as assembly halls, for example). Conversely, some environments may be particularly comfortable places for processing music. I’ve noticed, for example, that Dylan enjoys listening to music in the car. While some songs still cause him discomfort, the interior of a car seems to be good for listening. This also seems to be a useful space for Dylan to process language; he often extracts meaning from language more easily in the car. Perhaps the very features of private transport we complain about (sealed and isolated from others) are helpful to Dylan.

The ultimate privacy in listening is via headphones. In a previous post I’ve written about the use of headphones to block or clear out background noise, for example via auditory integration therapy. Until he was a teenager the only music which Dylan would listen to (with one exception which I’ll return to) was nursery rhyme audio tapes. When I persuaded him to accept a nursery rhyme CD my daughter offered to put it on an i-pod shuffle for Dylan. This created challenge as well as possibility. Although we could now use music to lessen Dylan’s discomfort in the community, if we didn’t get the choice of music right it would have the opposite effect: delivering music which Dylan found painful directly into his ears was far worse than an uncomfortable environment.

Don’t put anything on there your brother doesn’t like or know already, I instructed my daughter. I would discover her sneaky inclusions on the ipod from time to time as Dylan pulled the ear buds out and let me listen in (usually to a french pop song). One of the introductions my daughter made was crucial, however, in moving Dylan away from nursery rhymes; she had noticed his interest in one of my CDs and put this onto his shuffle. When Dylan first started to bring me the CD  (a collaboration between Elvis Costello and Anne Sofie Von Otter) I thought he was anticipating my behaviour rather than expressing a preference of his own. Later I would realise that it wasn’t that Dylan thought I wanted to listen to it but that he did. Dylan now has this album on CD, i-pod shuffle and i-pad. Is it possible, through this album, to identify the features of music which bring Dylan particular joy?

Music as joy: pitch and key

Part of Dylan’s hypersensitive hearing involves a discriminating ear; I believe he has perfect pitch. Dylan cannot bear the sound of school and amateur choirs. He finds music played through poor equipment painful. He cannot endure piped music through public address systems. This may be partly due to the background noise of electronic equipment but I have seen Dylan react with equal discomfort to poorly pitched acoustic music and a capella singing. Many of Dylan’s musical choices may therefore be determined by the quality of sound; I’m sure the fact Von Otter is classically trained has a bearing on Dylan’s experience.

It isn’t just about pitch though; Dylan may also have particular key preferences. When Dylan was very young  a musicologist, having observed Dylan’s engagement with music one evening declared: I think it’s Eb and Bb he likes – the language of the blues. Over the years I’ve seen this hunch borne out. Although at home Dylan only listened to nursery rhymes, at primary school he had a jazz blues tape which one of the teachers made for him and which Dylan listened to if he became anxious during the school day. Among Dylan’s favourite CDs today (though not making it into his final seven) are Bettye LaVette, Nina Simone, Etta James and Ella Fitzgerald.

Feeling the music

There have been a number of cases over the years of autistic children and adults with extraordinary musical talent. This sits quite comfortably in my mind with the gift for number which some autistic people demonstrate; music and mathematics share the same underlying structures. For these purposes, however, I want to focus on people such as Dylan who don’t show any obvious musical gift; while I’ve seen Dylan pick up a pair of drumsticks and keep effortless time, he doesn’t play an instrument. At home he lets me play piano and recorder but draws the line at harmonica; his arm clamps quickly across his head if I so much as pick it up.

Perhaps for this reason it’s taken a while for Dylan to tolerate my Bob Dylan collection. It is only tolerate though: I bought Dylan a copy of the Essential Bob Dylan last Christmas but it’s never been out of its case. Could this be about pitch and key? Is Dylan less enamoured of Bob than Nina because of the way they sound? I don’t think I have encouraged one rather than the other; I play them equally and with equal joy. I don’t dance to Bob Dylan though…

Over the last year my Dylan has discovered that he loves to dance. Every evening he chooses some music then holds his arms out to me. When I say ‘dance’ I should qualify this: it is spinning rather than dancing. Dylan takes you by the arms and with his eyes closed he spins clockwise as fast as you are prepared to accompany him. I have never known him become dizzy; he would spin all night if I let him. Every trick I try I cannot last more than one song. It ends with me clutching the table: I’m sorry Dylan mummy’s dizzy. This, then, is music as sensory pleasure: choose a singer with perfect pitch; give her the Ebs and Bbs; lay down a rhythm; and spin, spin, spin.

One of the distinctive features of jazz and blues is syncopation. Syncopation refers to the interruption of expected rhythmic patterns; instead of the beat our ear expects (based on the rhythm already established within a piece) we encounter variety. Miles Hoffman explains this as “a disturbance or interruption of the regular flow of rhythm” through a “placement of rhythmic stresses or accents where they wouldn’t normally occur.” (Hoffman, 1997). Given that autistic people are believed to favour the expected over the unexpected, an enjoyment of syncopation may appear a surprising feature of Dylan’s engagement with the language of music.

A research project exploring the neurological links between language and music has emphasised the parallel structures of conversation and jazz (LaFrance, 2014). Charles Limb, a musician and medic at John Hopkins, mapped the brains of jazz musicians and found that areas of the brain linked to meaning ‘shut down’ during improvisational jazz sessions. Jazz, Limb suggests, is based on structure and syntax rather than semantics: “It doesn’t have propositional elements or specificity of meaning in the same way a word does”. This, Limb argues, is more complicated than language:

If the brain evolved for the purpose of speech, it’s odd that it evolved to a capacity way beyond speech…I have reason to suspect that the auditory brain may have been designed to hear music and speech is a happy byproduct.

Music and feelings

While Dylan’s interest in jazz rhythms may be underpinned by structure and syntax, his song choices also suggest a role for semantics.  As well as the technical issues of acoustics, rhythm, pitch and key, Dylan’s engagement with music appears to be emotional. Just as you and I might associate a particular song with happy or sad times, so Dylan seems to have mapped some of his strongest memories on to music. Only recently have I realised that his refusal to listen to this U2 CD is probably because my ex-husband and I were listening to it at a crucial time in the breakdown of our marriage. Sometimes I cannot work out what the associated memory might be but I’m sure it is there; a Tears for Fears cover we are not able to listen to on a Patti Smith album for example.

Dylan’s songs

When Dylan started taking an interest in music I decided to help him build his own music collection. He only ever buys duplicate copies of my CDs, however. To try and extend Dylan I have bought him different CDs by artists he already knows but if he doesn’t recognise the covers he won’t play them. For Dylan, visual information is an important part of his engagement with music.

This means that Dylan’s seven songs are derived from my collection; his individual preferences are, nonetheless, apparent from the music he chooses. Some of the songs have particularly happy emotional associations for him I think; I’m not sure why he likes others but it could be the rhythm, key or quality of sound. I say a few words about what I think may inform Dylan’s selections. To support Dylan to make his choices I spread a long list of his favourite CDs on the floor (prompting Dylan to add to and subtract from these).

I then invited him to choose one CD at a time until we had seven. I made a visual group of the seven and gave Dylan an opportunity to make changes (he made one: Edie Brickell and New Bohemians lost out to a compilation blues CD). Here is the final result: Dylan’s seven songs. Enjoy 🙂

Song # 1: Someone Like You by Adele

I would have said Adele 21 was Dylan’s favourite CD so I think this is a secure top spot placing. I suspect that Dylan already knew the album before I acquired it; perhaps he had heard it on the school bus. Dylan particularly likes dancing to Adele. I think he likes all the tracks on the album; I’ve hazarded on this one.

Song # 2: Like an Angel by Anne Sofie Von Otter

Costello and Von Otter’s For The Stars was the first CD Dylan took an interest in. I think he likes the quality of Von Otter’s voice. Like an Angel is a trance-inducing song for Dylan; he can seem close to ecstasy when listening to it.

Song # 3 Shake it Out by Florence and the Machine

Mashee Dylan says to me, Mashee. That’s also what he calls treadmills and cross-trainers; I sometimes wonder what sense Dylan makes of a CD having the same name as the kit in the gym. Perhaps it amuses him. I am a bit surprised Dylan put Florence in 3rd place but I can see why he’d like her voice and the use of orchestral music.

Song # 4: Fields of Gold by Sting

My ex-husband was a fan of Sting and used to play this album a lot. I have a memory of him dancing to it with Dylan in his arms. I bought this CD for myself quite recently after a song on the radio jogged my memory. I was surprised by the way Dylan immediately claimed it and bought a duplicate copy plus a copy for his i-pad. I think he may have a deep memory of dancing with the man he knew for years as his dad.

Song # 5 Nobody’s Baby Now by Nick Cave

Dylan pulled Let Love In off my shelves recently and wanted me to play it. Since then he has been very attached to this album. I’m not sure why but, again, I wonder whether it is a deep memory of my ex-husband who used to play this album. Dylan was insistent that this was the youtube clip he wanted me to use.

Song #6 Night and Day by Billie Holiday

Dylan included a compilation CD of women blues singers in his top seven: lady sings the blues night & day. I’m not sure if he has a favourite song from the collection but I think he’s happy with this one; when I set the clip playing he came running to look. Dylan likes me to play this compilation CD. I think he associates it with good times and dancing.

Song # 7 Hide and Seek by Imogen Heap

I don’t know why Dylan is so attached to Imogen Heap’s album Speak for Yourself. I bought the CD in 2012 after this song was played at the funeral of a friend. It has no connection for Dylan yet this is the song he seems to particularly like. My ex-stepdaughter is called Imogen and I have sometimes wondered if this might explain Dylan’s attachment to the CD; he certainly likes me naming it. Imogen Heap, I say, it’s Imogen Heap. Leep he laughs, Leep.

References:

• Adrienne LaFrance (2014) ‘How Brains See Music As Language’  in The Atlantic.
• Miles Hoffman (1997) Syncopation.

 

Memory And Autism: emotion and the senses

Retrieving Memories

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

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

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

*

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

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

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

Clown –

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

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

~

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

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

Memory and Emotion

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

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

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

Memory Retrieval

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

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

Memory and the Senses

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

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

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

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

Reference:

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

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.

This slideshow requires JavaScript.

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.

Chitterlings And Chanel No 5: an Englishwoman and autistic son abroad

Dylan’s first holiday, before he was diagnosed autistic, was in Brittany. I have a photo of him at a roadside Aire near Mont St Michel where, fresh from the overnight ferry, we had stopped for breakfast. We were with a man I had met when Dylan was six months old (the relationship with Dylan’s  father had ended before he was born) and with whom I was expecting a child. That morning at Mont St Michel I felt as if I’d emerged from dark winter into a world of bright promise.

When we returned to Brittany the following summer the promised world had thrown shadows around the light; as well as a newborn daughter we had a newly-diagnosed autistic toddler to care for. My memory of the period is of profound sadness but that year, and for as long as the marriage lasted, we took delight in our Breton holiday. There was something about the region which we found comforting – almost healing – and which the children loved.

*

These visits stopped when the marriage broke down. With sole care of Dylan and my daughter I wasn’t in a position to make the trip, financially or emotionally. Practically, too, I felt unable to embark on a long journey by car with sole charge of two young children, one with a disability. So after that we holidayed closer to home while I re-built my confidence and resources.  When my daughter was 14 she went to live in Scotland with her dad but two years later she returned to resume her schooling in England and live again with me and her half-brother. My daughter had taken an interest in languages and become fluent in French.  Why didn’t I go to France anymore?  she asked. She had such wonderful memories of spending childhood holidays in Brittany. Could we go back there? After all, she was intending to study French at university. Couldn’t we go this summer?

So I booked a cottage in Brittany for a week thinking it was, indeed, a good opportunity. By the summer however, my daughter had returned to Scotland. I’d been left, it seemed, with the booby prize.  Never, ever – I told my friends – would I have booked a week in Brittany for myself and Dylan. Caring alone for a disabled adult with severe autism and a severe learning disability involves, on a daily basis, the assessment of risk. I try to introduce new and challenging experiences into Dylan’s life, but always with a contingency plan for if things go wrong. I had, I argued to friends, no contingency for breaking down/getting lost/getting sick/having an accident while we were in France. And I couldn’t even speak French…

*

On the run-up to the holiday I adopted various strategies for not dealing with the booby prize.  I checked the small print about cancellation but didn’t cancel, telling myself I couldn’t afford the cancellation charge and cost of a replacement holiday.  ‘You don’t have to go’, a counsellor and friend told me: ‘you can just not go’.  But a stubborn streak in me refused to lose the money and the holiday too.  I half-heartedly asked a couple of friends whether they would like to take my daughter’s place but found I couldn’t go as far as inviting the man I was half-heartedly dating at the time. I spent a good deal of time, too, not thinking about it. Then, as if on cue, my right arm developed a problem. This is ‘Dylan’s arm’ – the one he always insists on holding onto when we are out and about, and the one he uses as an extension of his own body to lead and tug and pull me to where he wants to go. I had succumbed it seemed, after all these years, to ‘carer’s elbow’.  I could hardly move for pain and driving was out of the question. Surely this was the solution to problem booby prize?

My GP told me that it was probably nerve damage and she could give me something which would help. She would happily write a letter saying I was unable to drive, for holiday insurance purposes, but perhaps I could try the amitriptyline for a few days?  My osteopath concurred and also recommended exercises, cold compress and a thermoskin brace if I wanted. All these proved helpful. Even more helpful was the moment when she paused, looked me in the eye and said:  ‘But you can do this if you want. You’re a competent woman’. This was a transforming moment. I had never given myself permission to think of myself as competent before. But now I sprang into action. I booked extra breakdown cover and got the car checked over. I telephoned my bank to make contingency financial arrangements if required. I printed out maps and wrote directions to myself in giant letters I could read while driving. I notified people that I was travelling with a disabled adult. And I spent every spare minute revising my schoolgirl French…

*

This summer I drove through Brittany singing along to the Adele CD which Dylan loves as he swayed to the music in his seat in the back, a big smile on his face. ‘I’m a competent woman’ I shouted out of the window at passing cows as I opted for unmarked roads and negotiated creative routes:  ‘I’m a competent woman’.

Our journey to the cottage in Brittany went smoothly and without a hitch. One of Dylan’s special attributes is his phenomenal memory; because of his idiosyncratic retrieval of memories, and the fact he can’t communicate them verbally, it can be easy to forget that he remembers pretty much everything. However it was clear from the way Dylan led me around the ferry as we left Portsmouth harbour, showing me where everything that he was interested in was located, that he remembered his last trip to France ten years before and knew exactly where we were going.

It is sometimes said that it is small shifts in routine or the environment which autistic people find difficult, not major change. This is certainly true of Dylan who seems to enjoy the adventure of holidays. So while Dylan’s memories of being in Brittany created some expectations about what should happen on the holiday, it wasn’t to the point of rigidity. This meant I could introduce different rhythms, activities and even foods during the week. As a vegetarian family, galettes had always been a useful staple while we’d holidayed in Brittany when the children were small. This proved to be another memory which Dylan quickly recovered and regular visits to creperies became a significant part of the holiday. Indeed, these became so important to Dylan that he started to verbalise not only a sound for ‘pancake’ but, before I ordered, ‘sugar’ (to try and secure a crepe instead of the healthier galette). Within this routine, however, there was some adventure.

Because ‘vegetarianism’ has no meaning to Dylan I don’t object to him eating something non-vegetarian if the non-meat option is one he’s unlikely to want.  Dylan particularly likes vegetarian sausages and doesn’t understand not being able to eat something that looks like a vegetarian sausage but isn’t. For this reason, he occasionally eats ‘real’ sausages.  While on holiday I’d ordered him sausage galette one day which he enjoyed so much he said ‘saucis’ the next time we were in a creperie.  I duly ordered some. When the plate arrived I was puzzled; I’d never seen spring-shaped sausage before. I was certain Dylan would not eat them. The usual tests were done (stare, sniff, touch) before Dylan ate all four of the strange springs on his plate with gusto, one after the other. ‘S’il vous plait’ I called to the waiter,  ‘Qu’est-ce que le saucisse mon fils as mangé?’ ‘Chitterling Madame’, he replied:  ‘Un spécialté regional’. Chitterling!  Dylan had eaten pig intestines!  But of course: while Dylan’s rigidity around food may be cultural,  the culture is that of autism not Englishness. He would probably have been equally thrilled with a dish of escargots.

*

During the holiday I was dependent on school girl French accompanied by the over-stated gestures I have a tendency towards. I hadn’t been aware of this before,  but one afternoon – while acting a charade about the removal of hay stooks from the field outside my bedroom window –  I realised the owner of the gîte (the audience for my performance) was amused by my non-verbal communication. I must have developed this strategy during the years looking after Dylan; if you have care of a child who doesn’t speak or easily understand language, then it becomes natural to enrich your communication with whatever is to hand. Pictures, photographs and other visual aids are great if you have them ready, but these things must be planned for. I guess I have got used to using my arms, hands, face and my whole body if it helps…

When I realised that the strategies I use to communicate with Dylan were also helping me to be understood in another language, I started to make connections between my experience of ‘being abroad in France’ and Dylan’s experience of ‘being abroad in a non-autistic world’. Here, in Brittany, my son and I were both without language. Was this, I wondered, why I had been so anxious about travelling alone with Dylan?  I started to think about how often, in our own community, I have to ‘mediate’ for Dylan linguistically; on a daily basis I speak for him, explain for him, explain him to others or ask questions on his behalf.  Often this is a complex linguistic as well as social challenge,  involving a judgement about how to describe the nature and impact of Dylan’s disability to others in order to explain his behaviour or secure some resource (a disabled toilet, say). Perhaps it was my awareness of not being able to give this linguistic (rather than any practical) support to Dylan that had seemed such a barrier to travelling abroad?

*

Once I realised that we were both without language, and that we temporarily shared the experience of ‘being abroad’  I began to enjoy the idea that there was this equality between us while we were on holiday. If you care for a disabled child or adult it can be hard to establish an equal and democratic relationship, particularly if the disabled person has a learning disability and is ‘non-verbal’. I found this sense of us being equals without language enjoyable.  However, I soon realised my error;  in this context, Dylan had advantages over me.

Because Dylan isn’t distracted by language (listening to or speaking it) he is free to focus in detail on the visual world and to store this in the way that we accumulate words. This was very much in evidence when shopping the day after we arrived. Confronted by a long aisle of biscuits in a supermarket I had no idea how to even begin to choose; as I stood there, feeling overwhelmed, Dylan swiftly plucked a packet from a shelf and put it in the trolley. The biscuits were some of his favourites  but not a brand or in packaging that was familiar to him. How had he located these so quickly, I asked myself?

I realised that what Dylan must have done was scan the photographs on all the products, quickly arriving at the right image, while I was still bogged down trying to read the package text.  This visual scanning is probably what Dylan does all the time at home;  for him, shopping at the Intermarché in Matignon was no different to doing the weekly shop at the Co-op in Sheffield. During the holiday I would see further evidence of Dylan’s visual intelligence. One day on a trip to Dinan – which I had forgotten visiting previously – he led me confidently through the old town to a square with a view identical to a snapshot in a photo album at home. Not only did Dylan revisit places accurately but he continued to commit new places and routes to memory; on the return journey to the ferry, cutting it fine at the end of a long drive, he saved our crossing by letting me know I had taken a wrong turn at Caen.

*

As well as the advantage of Dylan’s visual language I discovered a rather unexpected advantage of autism while in France this summer.  On our travels, it was Dylan who repeatedly charmed and befriended people; within minutes of meeting Madame Bilton, the owner of the gîte, they were smiling, hugging and kissing each other on the cheeks, while I held back, searching for something appropriate to say. In shops, museums, galleries and clock towers, my son smiled, greeted and charmed his way into passing hearts, while I hovered with my inadequate ‘bonjour’ and  ‘Il est mon fils’. Dylan, I realised, has been getting by on what might be called ‘native charm’ all his life; he knows how to make quick judgements about whether or not to trust someone, and how to show them  – without a word –  when he does.

On the ferry en route home we went into the duty free shop.  One of the things I had wanted to buy for myself while in France was a bottle of the Guerlain perfume Vol de Nuit, attracted by stories I had heard of its marvellous sillage, its use by French courtesans flying between Paris and North Africa during WWII and the propeller-shaped bottle. Dylan, restless and bored at my side, knocked over a display of bottles, and the impeccably-groomed assistant descended on us.  Relaxed in my new-found confidence in Dylan’s skills, I left him to take her hand and treat her to one of his big smiles. By the time we left the store Dylan had not only charmed her but was clutching a bottle of Armani Code she’d helped him pick out:  his first bottle of scent for men.  Moi? I settled for some Chanel No 5 (they didn’t do Guerlain).

*

One of the reasons we were cutting it so fine for the ferry that day was that on the way to the port I decided to take a detour to Mont St Michel;  I wanted to go back and stand on the same spot as in the photograph I had of myself with Dylan as a toddler. Even in a week I’d discovered things about myself and Dylan I hadn’t previously realised; after all my hesitation about going to France, the experience had given me the confidence to travel alone and abroad.

On our return to England I resolved to go back to Brittany the following year. I’ll do some things differently though: my language skills will be better (I have already enrolled in a French class on Dylan’s respite nights); we will go for longer; and I will be a bit more selfish about shopping for that Vol de Nuit.

Images:

All the photographs were taken by Liz

Walking On Tiptoe: reflections on diagnosis

Recently I was interviewed for Spectrum, a magazine aimed at parents and professionals supporting people with autism. The reporter asked questions about Dylan’s diagnosis which required me to recall events from 17 years ago. Here is part of my reply to ‘When did you notice the first signs of autism and how was Dylan diagnosed?’

“As well as a proneness to being unsettled, Dylan wasn’t showing any interest at all in language or toys. He didn’t play with his things, but rather sorted them out  and organised them. And even at a very young age he had a fascination for moving lights and sound, for example from films or the television. He was also quite rigid in his food preferences and had  some strange rituals with his foods and behaviours.  I didn’t piece any of these things   together initially – I didn’t know anything about autism really – but I did notice them. Once he was up and about on his feet, I also noticed that he had a strange lop-sided gait due to walking on his tiptoes. I remember pointing it out to the health visitor at one of his check-ups – ‘look how he walks on his tippy toes’ I’d said. Later, this became the crucial bit of information – the last piece of the jigsaw if you like.”

All of the above observations about Dylan’s behaviour at two years old continue to be true of him at 19, with the possible exception of the toe-walking, which I don’t see him do so often anymore.

*

Being asked questions about Dylan’s autism diagnosis years after the event felt both strange and familiar. When Dylan was diagnosed I found myself riding the merry-go -round of questions which will be familiar to any parent of a child with a serious illness or disability. In those initial weeks we attended appointment after appointment with multi-agency professionals in children’s services, all of whom asked the same questions, more or less in the same order. I remember how tired I became of repeating my answers over and over. The story became so well-rehearsed, some days I wasn’t even sure it was mine. There is a sense, I think, in which language and narrative can distance us from experience, and the more I had to talk about Dylan’s development, the more detached from my child I felt.

Being asked the questions again, years later, presented me with an unexpected opportunity. I knew that I had once had ready answers, but with the passage of time I wasn’t sure I could remember them, or whether I trusted them anymore. So I had to think again about how Dylan had been diagnosed, and I found that process helpful; the ‘recovery’ of memories from many years before, filtered through my subsequent experience of caring for Dylan, offered a fresh way of organising my understanding of our (i.e. mine and Dylan’s) life histories. In this process, even the rigidity and lack of change which has been part of  Dylan’s autism could be transformed, in that I could view it differently and so respond differently to it. This reminds me, again, that it is easier, and often more effective, to make changes to ourselves than to others.

*

One of my all-time favourite movies is Ordinary People, directed by Robert Redford and starring Donald Sutherland and Mary Tyler Moore. Moore and Sutherland play a married couple dealing with the loss of one of their two sons in a boating accident. The film is a marvellous study of grief and the way in which it affects each of us differently. Some of the most moving scenes involve the surviving son, Conrad, as he struggles to come to terms with his feelings of guilt and inadequacy, but it is the mother’s response which I find most compelling. Tyler Moore brilliantly depicts a woman retreating into a world of routine and order, making lists and lining up cutlery in drawers, refusing to engage with unplanned or unpredictable activity or emotion. For this character, the only way to deal with chaos is to order the things she is able to control: knives, spoons, forks.

An autism diagnosis has sometimes been compared to a death and when the reporter asked me how I responded to Dylan’s diagnosis I made reference to this: ” I suppose”, I said, “I went through the stages used to describe bereavement: shock, denial, anger, grief.  I was also plagued with low-level infections for about two years following the diagnosis: a cough I couldn’t shake off, insomnia, and later the recurrence of some tumours I’d had removed years previously. So the diagnosis took a toll on me physically as well as emotionally.”  Years later, I’d say that I’ve learned a few things from the mother in Ordinary People as well.

*

I sometimes catch myself feeling frustrated that I’m working on the same things with Dylan as I was when he was a toddler. Here are some of the things I say quite often:  Don’t put that in your mouth Dylan; Dylan, just try it – you might like it; just eat the macaroni cheese Dylan – don’t do that with it; Dylan, can you open your eyes – look at me please; Dylan, keep your arms still please. These requests sound ridiculous when I write them down. How confusing it must be for Dylan to work out what the rules are about what you can or can’t put in your mouth or do with your body. But one of my roles as Dylan’s carer is to try and interpret the world for him so that he can move through it more safely and with less fear and confusion than he might otherwise. As carers we need resilience and patience to continue to respond to the things which never seem to change. And perhaps there is value to be found in rigidity? If I ask myself what the functionality is to Dylan of lining up DVDs or eating spaghetti on a Tuesday – and if I remember the Mary Tyler Moore character in Ordinary People – I think I can understand how such behaviours and routines help create order in what must seem a chaotic and unpredictable world. Perhaps the challenge for autistic people, and those who care for them, is to hold the competing forces of change and rigidity simultaneously, and creatively, in their lives – but then perhaps that’s a challenge for all of us?

*

While Dylan’s autism hasn’t changed significantly in the last 17 years, my response to it has. No doubt in the process of recovering memory I’ve forgotten some things that seemed important at the time but which have faded or which I’ve suppressed because they were too painful. Forgetting, I often think, is as important a part of survival as memory. Some things, though, I am unable to forget. Although I noted earlier that toe-walking is something Dylan does less of now, it was this behaviour that was of particular significance to me at the time of diagnosis. As a poet I sometimes respond swiftly to experience and I captured events pretty much as they happened at the time in the poem Walking on Tiptoe.  If I were to write a poem about Dylan’s autism diagnosis today it would no doubt be a different poem to the one below. While both the style and emotion of the poem seem very raw to me now, perhaps without the rawness there would be no possibility of transformation.

*

Walking on Tiptoe

That afternoon, a pale amber light lit the tops of the hills
as we drove home from work and I felt myself unfurl to greet it,
grow brave after months of darkness.
I started to talk about him that evening while you chose a video
and the new baby kicked on the rug.
There was just something that didn’t feel right.
I could live longer without words, if it was only that,
but there were the cars which he clutched
and the things which he moved, backwards and forwards,
the route home from work which couldn’t be changed.
I asked you to get down the medical dictionary
and said:  Look up Autism, read me that.

In a strong steady voice you read to me from the living room
while I moved quietly around the kitchen, making his tea.
I listened vaguely to the symptoms and signs,
thinking yes and yes again, but not really engaging –
knowing the same could be said of all two year olds –
don’t want to look, don’t want to be picked up, don’t want to play or talk.
So I wasn’t desperately listening to you – was busy with a saucepan –
when you read, without hesitation (as if the words had no meaning):
There may be other behavioural abnormalities such as walking on tiptoe…

No, No, No. The pan clattered against the sink.  You continued reading.
Backwards and forwards, I paced the kitchen, flapping my arms.
No need for more words.  Stop, Stop I yelled at you and you ran to me,
then, spinning on the spot, not knowing where to turn,
how to get back, back to where I was before.
I banged my wrists hard against the glass in the patio doors,
wailing No, No, No as the light went out of the sky.
Inside, the genie was out of the lamp.
But oh to be free I heard him say as my son sat,
trapped in the glow from the screen, fixed by the colours.
I turned myself to the hills, switched on the outside light,
stared at the garden.

Later, when you understood, you smashed your fist against the wall.
The switch cracked from the bottom corner to the top right.
The next day you unscrewed the fissured plate; fitted new parts, fixed it up.

*

Reference

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