Being Harry: Autism and Virtual Reality

While I was watching England hold their nerve against Columbia last week,  Dylan was in Whitby with his key worker and another member of staff. Dylan is impatient for the sea and the overnight trip had been planned to help Dylan manage the wait-time for his summer holiday.

I know that not everyone is interested in football. However, the progress of the current England team is so unexpected that even those without any interest  in the game (my Dad, for example) are aware of what is happening.  It feels a bit like fantasy football.  I’m sorry that the trip has coincided with the England match, I said to Dylan’s key worker.  I had an idea he might otherwise have been  watching the match in the pub with his mates.  That’s OK, he replied.  I would have been working anyway.

Team Changes

Dylan’s key worker also told me he would be moving on soon.  I wasn’t surprised by the news. I understand that young people, wanting to start a family of their own or buy a first home, have financial considerations which affect decisions about work. As I’ve noted before, support workers are not well paid for the job they do.  Caring for others is one of the most demanding and valuable of roles and yet it is also one of the mostly poorly rewarded. As a consequence, staff turnover is high.

Dylan has been lucky to have been matched with experienced staff  but, even so, he has already had three different key workers. When Dylan’s first key worker left I was devastated. It hadn’t occurred to me, at that point, that this would be a feature of life in residential care. When Dylan’s second key worker left, after a fairly brief succession, I realised the role would always be temporary. The key worker may be the warden of the key but I shouldn’t assume they would be around long enough to unlock the door (as it were).

A potentially positive outcome of this situation, however,  is that it has helped me identify one of the  arguments I will make on my application to be appointed Dylan’s Welfare Deputy:  given the high staff turnover in the care sector, the continuity of support which a family member provides is invaluable, particularly in the context of someone who, as well as lacking mental capacity,  is autistic and non verbal.

Harry’s World

An American friend emailed recently to say she would be visiting with her teenage children next month.  Maybe we could visit Harry Potter World? she wrote.  I was excited by the idea but when I looked online I realised it was impossible; Harry Potter World is already booked up for the summer.

When Dylan’s first key worker moved to a new job she organised a trip to Harry Potter World for Dylan and another young adult. As well as a fabulous day out for the staff and residents, this was a good way of marking E’s departure. So when Dylan’s current key worker told me he had a new job, I commented that the trip to Whitby was perfectly timed in terms of helping Dylan make a connection with saying goodbye.

The trip to Harry Potter World was Dylan’s first immersive experience (I’m sure he would love Disneyland but I’ve never had the oomph to take him). Dylan, apparently, had a marvellous time,  ‘laughing all day’. They had arrived slightly early for their tour, having driven down from Yorkshire,  and the Harry Potter staff, realising the wait might be difficult for Dylan, had let them join an earlier tour and proactively made adjustments for Dylan, such as front row seating.  I couldn’t fault their practice, his key worker told me, it was an absolutely brilliant day.

 

Virtual Reality

Afterwards I wondered what Dylan had made of the experience. Did he think he was at Hogwarts? Does he believe Harry Potter is real? I remembered a conversation with a clinical psychologist at a time when Dylan’s ‘behaviours’  were a cause for concern. As we worked through his ‘incident charts’ the psychologist noted the link between Dylan’s anxiety and the films he watched.  It may be the case, the psychologist suggested, that Dylan cannot differentiate fantasy from reality. Perhaps, when he is watching a distressing scene in one of his DVDs, he finds it difficult to regulate his emotional response. Dylan’s extreme reactions to some of his films are understandable if you imagine them as responses to situations he believes are real. After all, these are extreme situations:  separation; loss; death; war.

Apparently there are ‘immersive cinemas’ which offer a total sensory experience. As well as a film being a visual and aural event, the senses of smell, touch and taste are engaged.  Thus during an ocean scene the audience might be sprayed with water; in a domestic setting, smells of home cooking could be released into the auditorium. I’m not sure whether this would be a good or a bad thing for Dylan, given his heightened sensory function.

I have similar reservations about the possibilities offered by Virtual Reality Headsets.  As they have become available on the mass market I’ve toyed with the idea of buying one for Dylan. Some aspects might appeal  – Dylan spends so much time watching films that the idea of him being able to enter an immersive and participatory environment is quite exciting. I’ve seen some people, however, become disoriented  when using the Headsets and describe the experience as unsettling. Equally, therefore, I can imagine Dylan being made anxious by such full engagement of the senses.

Fantasy Football

Right now, I feel as if I’m wearing a Virtual Reality Headset. England? In the World Cup semi-final? For the first time I changed my plan for spending time with Dylan last weekend. After the 120 minutes plus penalties marathon against Columbia earlier in the week, I wasn’t sure Dylan and I could spend Saturday afternoon together without one or both of us becoming frustrated. Dylan can cope with a little bit of football on TV but he has his limits. And I really wanted to watch the England v. Sweden match. Could I pick Dylan up on Sunday instead of Saturday? I asked staff.

It really does feel like a Fantasy Football Tournament. The scenes from the Samara Stadium last Saturday seemed beamed from a parallel universe.Are those fans trapped in Virtual Reality, I wondered? Has my TV turned into a giant VR Headset? When England won I toyed with the idea of getting on a plane to Moscow to find out.

If England do get to the World Cup final this year, I told myself, someone will set up an It’s Coming Home theme park where we can re-live the matches, as players or fans, in a fully immersive world.  The theme park will probably be somewhere just off the MI –  hopefully in the north, rather than the south, in honour of the contribution made by South Yorkshire to the winning England team. So while Dylan hangs out with Harry Potter, I can celebrate with Harry Maguire…

 

 

Note:

The photographs of Dylan at Whitby and Harry Potter World were taken by staff on the trips.  The other images are sourced from the Internet and to the best of my knowledge are copyright free.

The photograph from the 2018 World Cup shows England players celebrating a goal in their match against Sweden at the Samara stadium on Saturday 7th July. The goal was scored by Harry Maguire (second from right in the photo) who is from Sheffield, my hometown. In the photo he is being congratulated by John Stones who is also from South Yorkshire (Barnsley). The photograph shows Kieran Trippier on the left and another Harry (Kane) on the far right.

The final photograph shows the 1966 England World Cup squad. I was alive but too young to remember 🙂

 

Mother And Son In Aspect Ratio 1:1

One of the things I have missed most while Dylan has been without respite is the cinema. I’ve always loved the movies, especially in the late afternoon, so there was little I liked better on a night off than to catch an early evening film at the cinema across the road from my office. It’s more than four months, now, since I was able to do that. I can hardly believe I’ve managed for so long.

Recently there was a day when I thought I wouldn’t manage. The yearning was physical: I longed for the particular darkness and to feel the tang of marmalade ice cream on my tongue as I waited, in a pulse of white light, for the film to begin. How, I asked myself, could I have this? Screenings don’t start until the afternoon; I couldn’t be home in time for Dylan’s return from day centre even if I went to the first film of the day. Maybe the out-of-town multiplex offered earlier start times but not for the films I wanted to see (or with marmalade ice cream).

I would have to think creatively. The independent cinema I favour offers special screenings for particular sections of the community; once a month, for example, there is an autism-friendly event. I scanned the listings to see if there were an early day group I could join. The new mum club looked good but I didn’t know anyone with a baby I could borrow. The Over-55s? Now that would be the one. There was an 11 a.m. screening that day of a film called Mommy. Perfect.

I requested a day’s leave then checked the blurb. Xavier Dolan wasn’t a director I knew and the film was not one I recognised. My heart fell as I read; I wasn’t sure a narrative about a single mother’s struggle to support her violent adult son was what I needed. I was living this reality; I had coped with two incidents that week already. My plan had been to have a couple of hours not thinking about being such a mommy. I let myself feel sorry for myself for a while. Then it occurred to me that  today’s screening might be a gift: perhaps there was something art could teach this just-coping mommy about life?

*

Once I was seated in the pulse of light I started to relax. This was exactly what I needed, I told myself. There was a hum of anticipation in the auditorium as a man took the stage; tickets for the 55 club, it turned out, included a talk. Xavier Dolan, I discovered, is a young Quebecois film maker who had turned 26 only the previous week. Mommy was his 5th film; his first, made when he was 19 years old, had received an eight minute standing ovation at the Cannes film festival. Dolan is so very talented, the man giving the introduction mused, and still so young, it will be exciting to see where he goes next.

Dolan had, apparently, created a slightly altered version of Canada for Mommy – a ‘stretched reality’ . The film returned to one of Dolan’s favourite themes: the claustrophobic relationship between a mother and son (his previous films included the ‘semi-autobiographical’ The Reason I Killed My Mother). In order to represent the intensity of the mother-son relationship Dolan had filmed Mommy in something called a 1:1 aspect ratio. This would be immediately apparent to us, we were told, as the screen would look narrower than usual. Dolan had claimed this was the only way to shoot his film; the 1:1 aspect ratio ‘mirrors the turned-in circumstances’ of the mother and son. I had guessed that Mommy would be bone-close viewing. Now I was sure of it. I settled back to watch our narrow world unfold onto a narrowed screen.

*

Earlier that week Dylan had become anxious one evening. Later, when I considered the possible triggers, I couldn’t identify with any certainty what might have caused it. He’d had a calm enough day and was watching a film. My daughter was in her room. I was working in the attic. Perhaps it was a scene in the movie that upset Dylan. Or a sudden memory . Maybe it was confusion at the changes since his sister returned. Whatever it was it made Dylan come hunting for me, intent on tearing off my ears (his particular behaviour). Usually I can predict such an attack and ensure I am safe but on this occasion Dylan had me cornered. I held my arms up to protect myself but I knew it was no good. It would have been much worse, I’m sure, if my daughter hadn’t come to see what the fuss was about and pulled Dylan off.

That’s how it can be sometimes. Dylan doesn’t mean to hurt me. It is a flight/fight response to something which has made him anxious and emotionally overloaded. I probably head off three or four times as many of these incidents as I witness. It’s easy not to notice when we get something right, though, or to overlook the times we handle a situation skilfully. We tend, instead, to remember when we miss something or a situation goes wrong. Dolan understands this; he gives us a mommy sometimes at her glorious best and some days way out of her depth.

*

The son in Mommy is not autistic. ADHD is mentioned but not as the root of violence; we are offered social as well as psychological explanations (poverty, an absent father, inadequate social care). Nonetheless I recognised the relationship between mother and son and found links with my own experience.

Dolan wants us to see the closeness of the mother-son relationship as both nourishing and limiting. The mother (‘Die’) is the best thing her son, Steve, has; when everyone else has given up on him, she refuses to. But Die also holds him back. She cannot contain her son’s anger by narrowing his world to the walls of her house; when she tries, the violence turns on her. At these times the screen can hardly contain the charge; it spills out of frame as mother and son struggle for control. The intensity of the relationship (its 1:1 aspect ratio) becomes clear as they absorb the violence, refusing to give up on each other or walk away.

As I watched I kept thinking about a book I’d been reading. Phoebe Caldwell, reflecting on her work with autistic adults with learning disabilities, suggests that challenging behaviour can arise from a failure to differentiate from the mother. In ‘normal’ child development, Caldwell explains, mother and baby enter a ‘dyadic state’ in which baby’s every movement and action triggers a response from the mother. For the baby this is confirming; it learns something about its mother but it also learns something about itself. The baby therefore starts to understand that it is separate from the mother. It is possible, Caldwell suggests, that an autistic baby’s brain is unable to interpret the mother’s signals and the baby therefore fails to develop a separate sense of ‘self’. As a result:

Mother and baby remain bonded in this bubble of infantile need – infant because it needs to survive, and mother because she is drawn in by the maternal instinct to meet infantile need. The mother’s agenda remains the child. The baby may grow physically into adult but remains in the infantile state of critical need for the mother’s nurture. It still retains the fear of extinction if it feels it is not receiving this nurture or that the ‘dyad’, the infant survival state, is threatened. (Caldwell, 2006, p. 140)

Violence and aggression are common, Caldwell claims, where there has been a failure to separate from the mother as an infant. When the situation is complicated by autism, she suggests, it is extremely difficult to establish separation as an adult. Direct physical separation, Caldwell explains: ‘simply heightens anxiety, which sends the adult-infant back into the bubble.’ (Caldwell, 2006, p. 141). Recently I have been asking myself whether Dylan and I could be in a dyadic bubble. Perhaps, I reflected as I sat in the darkened cinema, this is what linked me to the woman on the narrowed screen?

*

Viewed through the lens of failure to differentiate from the mother, Dolan’s film made much sense to me. There are other representations of mothering in the film, however. The neighbour, Kyla, for example who befriends Die and Steve. Although we are aware Kyla has children, we don’t see her performing her mothering role; this part of her identity is ‘bracketed’. Kyla’s initial contact with Die and Steve is as a mother-son unit but she soon develops friendships with them as separate individuals. ‘From the point of view of the outsider ‘, Caldwell notes:

the mother/adult-infant bubble ‘feels’ exclusive and others involved in care will feel shut out. It is difficult to cross the boundary either way – the feelings involved are so intense and primal. It requires enormous emotional effort to establish communication between the different parties involved in care since all parties will feel protective. However, a real sharing of feeling may be almost the only way to stand back and see what is happening. (Caldwell, 2006. p. 141).

This process is, I think, one of Dolan’s preoccupations. When Kyla first gets drawn into the mother and son’s world, Die is struggling to establish boundaries that she and Steve can keep. Kyla’s increasing involvement in their lives is transformative. She gives Die a break from caring; she shares some of the practical and emotional responsibility of parenting Steve; she equips mother and son with education and life skills; and, crucially, she models alternative (non-maternal and non-infantilising) ways of building relationships.

Part way through the movie it seems that this support will be enough. It’s a film about community, I thought to myself; Dolan is inviting us to consider society’s role in supporting families. Mommy does not, however, resolve so simply. Unable to continue supporting her son, even with the help of Kyla, Die turns Steve over to the authorities. In a harrowing closing scene we are reminded that there are no winners in this situation. If you are vulnerable and troubled – because you are autistic, perhaps, or have ADHD or learning disabilities or are anxious or mentally ill – then you will struggle to receive the support you need either at home or from the state.

The laws on care and incarceration which Dolan explores may be a ‘stretched reality’ but they didn’t feel too far away from where we are or might be in my own son’s life time. While Steve’s relationship with his mother is claustrophobic and limiting, public services are depicted as chronically damaging. There is a sense in which the relationship between the mother and son, for all its flaws, had been the greater resource; for while such a relationship can be claustrophobic it can also be enabling. Although by the end of the film Die can no longer manage alone, she had at least tried to confound the skeptics; from the ‘turned in’ circumstances of a mother and son, stretched vision can also come. Mommy turned out to be gift indeed.

References:
Dolan, Xavier (2014) [Director] Mommy
Caldwell, Phoebe (2006) Finding You Finding Me. Jessica Kingsley Publishers

Images:
Showroom cinema by libcom.org;  Mommy by soundonsight;Xavier Dolan by english.rfi.fr; interior of the Showroom by thechildrensmediaconference

Ways Of Drowning: water, autism, the sea etc.

For I was born the sea’s eternal thrall 
~ Sea Longing, Sara Teasdale

A small bottle of almond oil caught my eye in the Asian foods section of the supermarket last week. I lingered over it, pulled by two memories. The first was of a boyfriend’s sister telling me that she soaked her hair in almond oil overnight. The second was of a midwife at the hospital where Dylan was born asking my mum to bring almond oil with her next time she visited.

Shops did not routinely stock nut oils in the early 90s so I was impressed when mum turned up with a bottle the next day. The midwife showed us how to massage the baby with the oil. He had been born with skin flaking like tissue paper from his body. It was sometimes a sign of post-maturity, the midwife said. Was he an overdue baby? But Dylan had appeared more or less on cue, his birth only slightly delayed as if (I reflected later) to coincide with a high tide and full moon. His skin was a mystery. Mum and I rubbed the oil into the tiny soles of his feet and the palms of his hands with our finger tips. It’s nice for baby to be massaged, a passing midwife commented: he’ll like that.

The Caul

When Dylan was diagnosed autistic, one of the things I fastened on in my search for cause was his difficult birth. I have written elsewhere about my long labour and the way Dylan’s head was born but then withdrew. Later I would read in African folk lore that magical spirits can obstruct a birth. I would also recall that it is magical, in English folk lore, for a baby to be born in its caul. My brother’s had been intact at birth and Dylan’s might have been  had a midwife not broken my waters. My poem Ways of Drowning opens with these births.

It had felt like an ordinary birth
(my mother’s third) until she heard
the midwife’s urgent voice: Forceps quick
her astonished words: This one will never drown
at sea – he’s one in a million, love, born in a shroud.
My brother does not swim in freshwater,
cannot relax in the bath.
*
My waters would not break: I laboured three days
with membranes intact until a siren midwife stuck
a sort of crochet hook up my vagina – wriggled it around
between the ebbing contract of my womb – tore the sac.
The head bore suddenly down on me: flaking and wrinkled
in sloughing skin, he beached reluctantly to spend his life
in search of underwater – wait for me to falter, let him slip.

The first stanza of my poem ponders a darker side to the caul’s charm; as the protection is specifically against drowning at sea, I imagine my brother reluctant to enter water where he isn’t protected (a lake, say, or bath). A suggestion implicit in the second stanza is that by breaking my son’s caul, I not only destroyed the protection he might have had, but made him vulnerable: my baby’s arrival with flaking feet signalled an affinity for water, his desire to be under it.

The naming

I will go back to the great sweet mother,
Mother and lover of men, the sea.    
~ The Return, Algernon Charles Swinburne

Only after I had named my baby did I realise that I’d called him for the sea. I had intended it as an homage to Dylan Thomas and Bob Dylan, not the waves. Still, as Dylan had been born in a seaside town it felt appropriate; I’d held him to the high window so the first thing he saw, after me, was the sea. The serendipity of Dylan’s name soon became apparent. Before I noticed the symptoms of autism I’d puzzled at the pull of water; not only was Dylan soothed by it, he could sense its presence. I describe this in my poem Into The Blue.

He is a diviner:
his body shakes at the prospect
as he veers swiftly from my side, flapping and trembling

to silent springs bubbling from underground.
He has led me to still fountains, hidden wells and troughs;
searches through his picture books for lakes and lochs.

The poem goes on to describe my urge, in sea, to ‘loose my grip, let him go’ believing that he ‘would skim easily/across the water’. I use the image of a butterfly to suggest transformation; in imagining such a re-birthing, I make the sea more of a mother to Dylan than me.

Merman

And all the mermen under the sea
Would feel their immortality
Die in their hearts for the love of me. 
~ The Mermaid, Alfred, Lord Tennyson

It wasn’t only Dylan’s first name that turned out to be appropriate; years later, on hearing Dylan’s full name, a child would ask why I had called him after a girl. But I haven’t, I replied, confused. Ariel, the child told me, was the name of the little mermaid: she was a girl. I had intended Dylan’s middle name to refer to Shakespeare’s The Tempest and to Sylvia Plath, not a Disney film.

For years I fielded questions wearily. No, Dylan’s name was not because of The Little Mermaid: I had never seen the film and knew nothing about it. And actually (by the way) Ariel was a male name. But then out of the blue, on the run-up to Dylan’s 20th birthday, he developed an interest in The Little Mermaid. A year later, Ariel the mermaid is Dylan’s heart’s delight.

I have written elsewhere about the impact of film on Dylan. While Disney has been the trigger for some positive learning, Dylan’s love of Disney also has its challenges. Given his passion for the sea, for example, Dylan likes to copy the underwater sequences. I can understand why he would do this; the action tends to be exciting and lead to narrative transformation. Unfortunately, however, Dylan’s attempt to copy the underwater antics of his favourite characters is potentially disastrous.

As a non-swimmer Dylan is at high risk in water. Lacking awareness of its dangers, he has been known to leap into pools and wade out to sea. Dylan would, I am convinced, simply keep walking into the ocean. I have had to yank him up from the bottom of the bath and from swimming pools repeatedly. After an incident when Dylan had to be rescued from the deep end of a pool where he had leapt, fully-clothed, after a lesson, staff at Dylan’s school decided they were no longer able to take him swimming. Supervising Dylan at the edge of water – beaches, harbours, river banks – makes me nervous.

That torn caul could not possibly be the cause of Dylan’s vulnerability in water. Still, I think about it sometimes. It’s strange that I prefigured the way Dylan would ‘spend his life/in search of underwater’ in a poem written years before. This, of course, makes me even more nervous.

Elemental

I am too long away from water.
I have a need of water near. 
~ Exiled, Edna St. Vincent Millay

Years ago a Medium told me I should always live by water. The simplicity of it appeals; that I am the best I can be by water. There is some truth in it I think. I have always been a swimmer. Walking by water soothes me. I am in awe of the sea. Perhaps that is what distinguishes my simple love of the sea from Dylan’s more elemental need. Dylan isn’t in awe of the sea: he wades in as if it is home.

The Sea Boy

I am the sea, I am the sea!
~Mana of the Sea, D.H. Lawrence

It is the sense of exile strikes me; being away from the sea is represented, in literature, as estrangement from self. This idea is in The Little Mermaid as well as the great sea poems like Coleridge’s Ancient Mariner and Masefield’s Sea-Fever. Could Dylan’s identity as a human being – his sense of self – depend on his relationship with the sea not people?

‘One of poetry’s jobs’, Ruth Padel writes, ‘is to transform real life imaginatively so we understand our lives more pointedly, more fully.’ (Padel, p.18). It is in the close observation of a poem that we feel the thrill of the familiar made strange and the strange, familiar. Poetry helps us to recognise ourselves but with fresh eyes; such recasting of experience changes the way we think and feel about our lives.

Some of the poems which influence us this way, Neil Astley notes, are encountered by accident: ‘That short poem we stared at, read and re-read, on the underground or subway train. Or the one photocopied by a friend, now a personal talisman pinned to the kitchen noticeboard or kept in a wallet’ (Astley, p. 19). Last week I re-encountered a poem which, years ago, I pinned to a noticeboard.

The Sea Boy

Peter went — and nobody there —
Down by the sandy sea,
And he danced a jig, while the moon shone big,
All in his lone danced he;
And the surf splashed over his tippeting toes,
And he sang his riddle-cum-ree,
With hair a-dangling,
Moon a-spangling
The bubbles and froth of the sea.
He danced him to, and he danced him fro,
And he twirled himself about,
And now the starry waves tossed in,
And now the waves washed out;
Bare as an acorn, bare as a nut,
Nose and toes and knee,
Peter the sea-boy danced and pranced,
And sang his riddle-cum-ree.

Walter De La Mare

It isn’t one of De La Mare’s more renowned pieces and reading it today there are things about it I don’t care for. But at a time when I was struggling to come to terms with Dylan’s diagnosis the poem helped me. What it did was offer me an affirming mirror; the boy in the poem, I realised, was like Dylan. Was he autistic? I remember asking myself. I wasn’t sure I’d encountered such a representation of autism in literature before.

I kept the poem on my noticeboard for years. I found Peter both strange and familiar; while I recognised Dylan in him, it made me rethink what I knew. Peter and Dylan, I realised, were sea boys; they had an essential connection to the sea. For me, I think, this was part of the process of seeing Dylan for who he was instead of who I’d expected him to be.

References:

Neil Astley [Ed] (2002) Staying Alive: real poems for unreal times. Bloodaxe
Elizabeth Barrett (1998) ‘Into The Blue’ in Walking On Tiptoe. Staple First Editions
Elizabeth Barrett (2005) ‘Ways of Drowning’ in The Bat Detector. Wrecking Ball Press
Ruth Padel (2002) 52 Ways of Looking At A Poem. Vintage

Images:

Except for the pictures of me with Dylan (which were taken by my ex), the photographs were taken by me  in Brittany, Pembrokeshire, Saltburn, Norfolk, Kent and the English Channel between 1996 and 2013.

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A Tough Nut To Crack: reflections on control

This week I decided to re-read Louis MacNeice’s Autumn Journal . When I went to look for my copy of MacNeice’s collected poems, however, it was missing. I once heard a psychotherapist compare the feelings we experience on losing a book with the realisation that we no longer love someone. Later, I turned this into a poem.

How It Happens

Like you might lose a book from your shelves –
not noticing for a while (three years perhaps)
until one day you look for it.
Confident at first, you become uncertain,
discomfited. Later – frantic, obsessed –
you climb on high stools to reach
impossible shelves.
There might be questions asked.
Not just what you did with it
but when you had it last –
whether you were careless,
mislaid it perhaps.
Or did you give it away?

You might want to accept it.
Not be sure anymore,
what you liked about it or why
it was important to you once.
But something must have made you look.
A passing reference on the radio,
that small detail in an obit in The Times.
Or were you reminded by eyes or chance face
passing by? Did you hear words spoken
by another mouth – like seeing a copy
of your book on someone else’s shelf?
When you realise it’s gone can you find it again?
Get it back? I don’t know how. It happens (perhaps).

Afterwards I took to filing my books alphabetically. They’re not the only thing in my life in order now: my music is arranged Armatrading to ZZ Top; drafts of poems are kept chronologically; documents are filed by theme. My life wasn’t always like this however; as a student I lived in typical disorganisation. I remember being torn off a strip by my supervisor, in the run-up to submission of my doctorate, for not having kept my research records in better order.

*

My use of alphabetical systems to order the environment is partly about supporting Dylan. Dylan doesn’t know the alphabet but he can memorise objects visually. He needs books and music to stay in the same place, however, if he is to locate what he wants. As I don’t have the ability to memorise the position of things on shelves, the only way I have of keeping books and music in the same order is to use the alphabet. Although Dylan doesn’t read my books he is interested in their covers and has favourites; my Blake books and collected James Wright, for example, are particularly loved (Dylan likes men with beards and there is a splendid photo of Wright on the back cover of Above The River). Dylan organises his books by a system other than the alphabet but he has memorised the position of each one and it is important that I don’t disrupt this by moving them.

This organisation of the environment goes further than books and music however. As far as Dylan is concerned, everything in the house has its place. His view of how things should be is inch-perfect; if I stand up from a chair and push it aside then walk away, Dylan will re-position it exactly as it should be. His systems apply to all sorts of objects: a video case left open on a particular item of furniture overnight; a DVD case placed behind a sofa cushion; a hair brush on a specific shelf; some papers in my writing room which must not be left out on my desk. Dylan’s sorting is a major part of his autism. Although some of his habits are fixed his organisation of the environment continues to evolve. At the moment, for example, he sorts holiday and steam train leaflets using a system based on whether or not we have visited and how much he would like to (a sort of queue system). His methods are becoming increasingly sophisticated; if I can’t find something I assume that Dylan has found a new place for it.

Parents and carers often make adjustments to the way an environment is organised in order to make it more comfortable for an autistic child or adult. Although Dylan likes being out and about, the community is stressful for him; coming home to an environment which is predictable helps him to relax and feel safe. While initially this required a conscious effort on my part, I have been making adaptations to the home for so many years now it has become second nature to me. In a previous post I noted that we tend to take on the characteristics of people we live with and observed that there’s no reason why this should be any different for those of us who live with people who are neurodiverse. I would certainly admit to having ‘gone native’: I control the environment for my benefit now as much as for Dylan.

*

‘Control’ is one of those concepts that can be used both positively and negatively: children shouldn’t be out of control but being controlling is frowned upon; we don’t want to lose emotional control but stiff upper lips are unhealthy. It is also a subjective concept – how much control people consider too much varies. Control is, however, used as the basis for judgement; complaints about people being ‘controlling’ are frequently made in the workplace and home. Criticism is also often made of environments which are controlled; I find it puzzling that it is considered OK to comment on someone’s house being tidy, but not on one being messy. A boyfriend who teased my alphabetical shelves rankled so much I put him in a bluesy poem:

My lover mocks the way I file a book;
the order against chaos that I keep.

For me, writing a poem is a process of discovery as well as a technical challenge; I don’t think I realised until I wrote those lines that my keeping order was a way of keeping at bay the forces of disorder. But I realised, afterwards, that this is partly what I am doing; a controlled environment is one in which we reduce risk, be it debris from an explosion or rogue measurements from complex variables.

*

Dylan has been assessed at home recently by potential providers of residential care. After one care home manager had completed her assessment we were chatting about transition from child to adult services. She had recently visited a children’s respite provision, she told me, and had been dismayed by how controlling the environment was. The adult provision she was responsible for, she said, supported young people to have control over their own lives. I had no reason to argue with that. But then: ‘I sometimes think’, she said, ‘ that if parents were less controlling fewer adults would end up in residential care’.

I felt as if I were the centre of a controlled explosion. I was speechless. Did she think a residential place a failure then, second best to continuing to live in the parental home? Was she criticising my parenting? Had she clocked my alphabetical bookshelves perhaps? Afterwards I reflected that none of these were likely to be the case: she wouldn’t have shared them with me if they were and, besides, I liked her. I decided that she wasn’t talking about controlled environments so much as controlling relationships. I let myself off the hook: I wouldn’t berate myself for having a tidy house. Parents of autistic children don’t need any more sticks to beat themselves with; we already have plenty. Alcohol in the first trimester. A poor diet. High stress levels. A prolonged labour. That vaccine shot. I didn’t plan to add ‘controlling mother’ to the list. And besides – isn’t that just another version of ‘refrigerator mother’?

*

The film Ordinary People (which I’ve referred to elsewhere) is a study of the impact of loss on a family. Buck, a much-loved oldest son, dies in a boating accident which his younger brother, Conrad, survives. The movie opens in the aftermath of a failed suicide attempt by Conrad who is struggling with survivor guilt and Post Traumatic Shock Disorder. Conrad agrees to see a therapist, Dr Berger, but at an initial meeting is reluctant to engage.

Why are you here then? What do you want from me?

I don’t know. I guess I’d like to be more in control.

Why do you want to be more in control?

I don’t know. So that people can quit worrying about me.

Well let me tell you something: I’m not big on control.

When Conrad balks at Berger’s suggestion that he will need to attend for therapy twice a week Berger shrugs: Control’s a tough nut to crack. Control, it turns out, is a key theme of the movie; as the focus shifts to the impact of Buck’s death on the wider family, we realise that this is the way Conrad’s mother, Beth, copes with her grief. Beth manages the environment and those around her obsessively: she lines up cutlery, makes lists and runs a perfectly-ordered house. She controls schedules, organises family trips and manages the behaviour of Conrad and her husband, Calvin. On the morning of Buck’s funeral, it transpires, Beth had asked Calvin to change his shoes and shirt. Conrad tells Berger that his mother had never forgiven him for getting blood all over the new bathroom tiles when he tried to kill himself. Berger knows that what Conrad actually needs is not to feel more in control but to feel; Berger helps Conrad but Beth’s refusal to let go ultimately causes her to lose everything.

I’ve watched the film dozens of time but never fail to be moved by the mother’s situation; grieving deeply for her dead son, the only way she can cope with life is to erect defences against further loss. Haven’t I had enough surprises? she yells at Calvin when he tries to persuade her to see Dr Berger for family therapy; her response to grief is to want life to be a settled, private place. Beth’s determination that nothing should ever again disturb her world means she appears cold and detached emotionally: if she is not incapable of loving Conrad and Calvin, then she is unable to show it. In a previous post I have reflected that this is an understandable response to trauma; while keeping an ordered and controlled environment is helpful for Dylan, there is probably a sense in which it helps me too.

*

Although Conrad tells Berger that his mother hates him, his father sheds a different light on the relationship between mother and son; the problem, Calvin suggests to Berger, is that Conrad and his mother are alike. I have been thinking, recently, about the ways in which people are similar, not different. Spectrum, a manuscript of poems I’m working on currently, considers autism as an integral part of a family. Instead of focusing on the things which mark Dylan out as different, the poems in the manuscript find connections between his autistic world and the neurotypical world around him. Rather than dwelling on paradox, these poems look for pattern. In the title poem, I reflect on possible links between three generations of family; here I show my father and I attempting to impose some control on our respective environments, as Dylan does on his.

Spectrum

He calls me on Sunday morning at 8.
There are 72 out, he says: 3 more
to come by the end of the day.
Dad has been counting daffodils.
I picture him in the garden
stooping over them, moving stems
between his hands in groups of 6.
My son is getting anxious;
he is clutching his second DVD of the day,
needing help. This call should only take
5 minutes, I tell myself, if I just say Yes.
My guess is perfect for once. I correct
the angle of a vase on the table
as I pass: fast rewind, select play, press.

Mathematics is something which I think of as linking myself and Dylan as it is associated both with autism and poetry. The film Ordinary People shows us that control can be functional in helping us to overcome trauma and deal with situations we find threatening; I use numbers in my poem to express this positive side of exercising control. The film also, however, illustrates the dangers inherent in such control and I try to hint at these in the poem. It may be that Dylan’s current behaviour (which you can read about here, here and here) is related to control; perhaps he is testing out boundaries or struggling to manage new feelings. If emotional control can be both enabling and disabling, then my task is perhaps to provide Dylan with the freedom to explore his emotions in a place which, while not risk-free, is stable and safe.

Endnote:

I’m still wondering what happened to my copy of Louis MacNeice’s Collected Poems but my money’s on the boyfriend who mocked my alphabetical shelves 🙂

*

References:

• Elizabeth Barrett (2013) ‘Spectrum’ in Turbulence, No. 13
• Elizabeth Barrett (2005) ‘How It Happens’ in The Bat Detector. Wrecking Ball Press
• Robert Redford (1988) Ordinary People [VHS]

Images:

All photographs by Liz except for the cover image of Louis MacNeice’s Autumn Journal (Faber and Faber) and the movie stills:

• Dr Berger (Judd Hirsch) and Conrad (Timothy Hutton) is from Youtube.
• Conrad, Calvin (Donald Sutherland) and Beth (Mary Tyler Moore) having dinner is from Youtube.
• Conrad and Beth in the garden is from whatculture.com

Here’s a trailer for the movie:

Ways Of Seeing: sepia, rose, 3D or lens-free?

The recent developments in Dylan’s behaviour are so puzzling they seem to need left field answers. I pore over the incident log searching for a pattern. When I can’t find one I turn it around and look again; it must be here somewhere, I tell myself, I just can’t see it. I share the log with others – maybe they will see something I’m missing.

Living with autism is a bit like being a detective. Usually I enjoy this; stumbling across the unexpected or finding a missing piece of puzzle is satisfying. Perhaps this time I’m looking too hard or in the wrong places: if there isn’t an obvious explanation I’m probably not going to find a cryptic solution in a log. Maybe I just need to stay watchful so I don’t miss the clues when they come.

My records, for example, could be part of the problem. Perhaps I can’t find a pattern not because of the way I’m looking at the log but because of the way I’m seeing the behaviour. Parenting Dylan, I’ve suggested before, is like ethnography; to understand his world I’ve had to walk in his shoes and look with his eyes. If I can’t make sense of Dylan’s behaviour then maybe I need a different way of seeing – otherwise, I might not stand a chance of that flash of light from the left hand side.

My friend Jack, who blogs about being the sibling of an autistic man (among other things), can turn a cliché on its head. We view the past, he says, through sepia spectacles; it is the future we see through rose-coloured glass. Such optimism. Parents of autistic children can feel deep anxiety about the future but I suspect many of us bury it. I don’t know whether I have become a more positive person through Dylan’s autism or whether I was always an optimist but these days I wear prescription rose. They’re good up close, I think, but not so great at a distance. Perhaps that’s part of the problem: could my present-time focus be preventing a long-view of Dylan’s needs?

*

Here’s Dylan with our friends Julie and Ella earlier this year; we’d been to Cineworld to see Tarzan. Ella is a seasoned cinema-goer but for Dylan this is still a relatively-new experience. I have worked hard over the last few years to support Dylan to access the cinema; we started with Autism-Friendly screenings and after a while were able to attend selected mainstream films. On this occasion Julie and I had planned to take Ella and Dylan to the cinema at the end of a canal walk; we would be tired and this would be a good way to end the day.

As it was hard to judge timings we would have to choose the film on arrival; not a problem at a cinema complex where there would be multiple screenings of children’s films. The first suitable film, however, turned out to be a 3D screening. Dylan hadn’t been to a 3D film before. I don’t think he’ll wear the glasses I said to Julie. As the glasses came in sealed bags we couldn’t try them before buying tickets. If Dylan wouldn’t wear the glasses, the man at the desk advised, he wouldn’t be able to enjoy the film; without them it would look blurry. The next regular screening was not for another hour; Dylan wouldn’t wait that long so, armed with pick ‘n’ mix and specs, we went in.

All appeared to be going well. I explained to Dylan about the glasses. I photographed him in them. He seemed pretty chilled. I turned to Julie; when I looked back Dylan had removed the lenses from his specs. Julie and I tried every which way but could not get those lens back into the frames. It was frustrating for me to have paid for glasses that hadn’t lasted to the start of the film but it would be even more frustrating for Dylan once the film started…

In the event we managed; Julie and I shared, sacrificing Tarzan’s outlines so that Dylan could experience him in 3D. Dylan seemed to prefer his lens-free glasses: he wore them as we left the cinema and, as I remember, kept them on in the restaurant afterwards. I think he looks rather handsome; the frames suit him. Julie pointed out it was actually a sensible thing for Dylan to have done: You gave him some glasses he couldn’t see through. He wanted to see so he took the lenses out.

*

I have two pairs of glasses (as well as my rose spectacles) which I alternate between. My optician tells me that bifocals are inevitable at some point. This has happened recently and fairly rapidly; I’ve not had to think about my own eyesight much before now. I did, however, have to spend time at the eye hospital when my daughter was young.

She had a squint or ‘lazy eye’; her father noticed it when she was only three years old (for some reason I could never see it) so it was picked up relatively early. Before a treatment path could be decided upon the doctors needed to undertake a comprehensive assessment of my daughter’s eyes including standard sight testing. This wouldn’t be possible, I told the optometrist. Her eyebrow raised. I could see ‘problem mother’ written across her face. Well we’ll just have a go shall we, she said. But my daughter, I explained, wouldn’t be able to complete the test because she didn’t know the alphabet: she won’t be able to tell you what she can see, I said.

My daughter was at a Steiner kindergarten and in line with Steiner philosophy my husband and I had made a decision not to introduce formal learning until she was seven. My daughter would not therefore be able to name the letters on the sight chart even if she could see them. The assessments were re-scheduled and in due course full measures obtained. I sometimes wondered whether the delay in gathering this data altered the course of treatment; although there had been talk of surgery my daughter controlled the squint and there was no intervention.

Dylan’s sight and hearing have never been assessed and, given the way measurements are taken, it is unlikely that they could be; for all I know Dylan may be short- or long-sighted. Medical tests and examinations require more than the informed consent of the patient (challenging as that can be); they usually require language and sometimes literacy. My daughter’s inability to report what she could see because she wasn’t yet literate was temporary; not completing the eye test did not have major implications for her health (and may even have helped given that it delayed intervention). For someone like Dylan, however, who is neither literate or verbal, the challenge posed by the need for medical examination is significant.

*

Dylan has now been referred for neurological and psychological assessment; while the changes in his behaviour may be functional and an attempt to communicate, there is a possibility that Dylan is having seizures. Before Dylan is able to access specialist services, however, he needs to have had a full medical examination to rule out other possible causes. Dylan may, for example, have a persistent ear infection or chronic disturbance in his ear; this could explain why Dylan grabs at ears during an episode. Equally, Dylan may be experiencing headaches or some other underlying problem; the nose bleeds which Dylan has always been prone to have increased in frequency and duration in recent weeks.

Getting Dylan to accept a medical examination is, however, another matter; he refuses to allow our family doctor to carry out even the most perfunctory of observations. I have made previous reference to Dylan’s refusal to consent to medical intervention here and here. Apart from a couple of emergency situations this has never posed a problem in that Dylan has always been healthy.

Recent developments have, however, put Dylan in a difficult position in relation to medical services. The possibility that his distress may be due to an undiagnosed medical condition is troubling; Dylan does not understand that ‘medicine’ is a good thing and can make you better and he cannot therefore make an informed decision to accept or reject it. I act in his best interests. At what point might that involve over-ruling Dylan’s resistance? And what exactly might that involve?

In a previous post I have argued that we cannot leave autistic children until they are adults to encounter medical services. By then they may, like Dylan, be resistant to something which is unfamiliar and feels threatening. While Dylan was growing up I helped him to establish boundaries in relation to his own body; how does he square medical examination with my insistence that he shouldn’t remove clothing in front of strangers or let anyone touch him? I realise, now, that this lesson needs qualification.

*

I once read that the development which has contributed most to human happiness is dental care; before advances in dentistry, apparently, toothache was responsible for great misery. Happily Dylan (as far as I know) does not suffer from toothache; Mr Jones the dentist has worked patiently to support Dylan through ‘rides on the chair’ to the full examinations he now receives regularly. I have no idea whether this would help if Dylan ever needed any work doing but it would, presumably, assist with diagnosis.

Surely we could apply the model of regular dental check-ups to general health care for autistic children? Regular contact with professionals and equipment (stethoscopes, thermometers, BP monitors etc) when Dylan was young could have helped prepare him to accept the basic medical observations he is so in need of now. If you are a parent of a young autistic child, you might want to lobby your education provider to incorporate such a programme. Alternatively, you could take your well child for regular check-ups with your family doctor; one day you may be glad you did 🙂

*

All images taken by Liz except for the rose-coloured spectacles (huffingtonpost.co.uk) and the sight test chart (verywellbeing.co.uk).

That Fishy Feeling: autism and empathy

I like to read books about living silently because they help me to reflect on how Dylan might experience the world. From the book I am reading at the moment I have discovered that in 11th century France the monks at Cluny developed simple hand signs to facilitate silent communication. The signs are described as a system rather than a language due to the lack of grammar and syntax. However  they: ‘enabled work and life to proceed efficiently without speech’ (McCulloch, 2013, p. 97). Signing was apparently confined to three areas of the monastery – the kitchen, the library and the liturgy – so the Cluniac signs reflected the needs of these settings. There was:

…a rich array of words for different types of fish, but no sign for meat, which would not have figured in the monastic diet. (2013, p. 98)

I enjoy the irony that today I’m using hand signs to facilitate Dylan’s speech (I am using makaton, a language programme aimed at people with learning disabilities). Wanting to build the use of signs into our life in an authentic way, one of the first words I looked up in my vocabulary book was Pub. I flicked through the pages to where I thought it would be. No sign. I turned to the index. No entry. Sign systems and language programmes, today as in the 11th century, are functional and develop in response to the needs of the community; as makaton is educational and aimed at children, there is no pub. There is, however, a sign for fish in the makaton book. In fact there are two signs for fish: dead and alive. While this is hardly the array used by the monks at Cluny it was, I thought to myself, more than Dylan and I would need.

One, Two…

We are vegetarian; Dylan from birth and me since my early teens. At a time when it was unusual not to eat fish or meat (at least in the community where I was raised) it required some determination to resist the pressure (and ridicule) of family and friends. My arguments at the time were largely moral and economic but I had a strategic reason too: I hated fish.

In the 1970s, at the school I attended, you did not get a choice of school dinner; there was a set meal and that is what you had. On Fridays it was fish. Not only was there no alternative, the amount you ate was monitored; if you wanted to leave any food you had to put up your hand and ask. A dinner lady would make her way across the dining room to you, inspect what was left on your plate, and decide whether or not you were allowed to stop eating. We tried everything we could to get rid of what we didn’t like: hidden under a leaf; cut to appear less than it was; re-distributed around the table so the request to leave it could be shared. The dinner ladies’ eagle eyes never missed a trick: what’s that under your chips? You can leave those but eat the fish underneath please.

Putting fish in my mouth made me feel sick; I gagged at each swallow. So I developed ever more desperate strategies. On my knee. Up my sleeves. In my pockets. Once, realising I wasn’t dressed in clothes with hiding places, I came up with what I thought was genius. I had worked my slow way through half the piece of fish I had been given. There was too much still on my plate to be sanctioned as leftovers. When the backs of the dinner ladies were turned, I tore some hair from my head and positioned it on what remained of my fish. My hand went up: please can I leave this fish, it has hair in it? The dinner lady ran her eyes over my plate and sniffed. I’ll take that off you. You’d better go and get another one. Be quick now; there isn’t much time before the bell. Eating 1.5 fishes that day went into the log of horrible things that had happened to me. It wasn’t long after that I announced I had become vegetarian.

Three, Four…

Apparently we have a penchant for the foods that our mothers ate during pregnancy. Our parents also pass their own food preferences to us through the meals they prepare in the home. I don’t remember being given fish to eat as a child and perhaps it was its unfamiliarity when I encountered it at school which caused me to resist. It could equally, however, have been dad’s tropical fish.

I’ve never been sure whether fish qualify as pets but I can imagine not wanting to eat something which I associated with dad’s fish. My mother didn’t consider them pets however; she banished the tank from the house. I remember hanging around the garage, where it was kept, mesmerised by the sound of the pump and the blue light. Once, dad removed a pregnant guppy from the tank to protect the babies from being eaten by other fish when they were born. He put the guppy in a Pyrex bowl in the airing cupboard where he said it would be safe and warm. The airing cupboard was in my bedroom so this was our secret; my job was to move it if mum showed any sign of opening the cupboard door. One morning I found the pregnant guppy had flipped out of the bowl and was dead on one of mum’s clean towels. I was inconsolable.

Keeping pets, we are told, not only helps young children to develop skills associated with small animal care but develops empathy. I have known parents who don’t care for animals but who keep them for the sake of their child’s social and emotional development. One such friend argues that the only reason for a pet is to teach a child about death . Perhaps the pregnant guppy had a purpose after all.

Five…

Having an autistic child in the family can have implications for keeping pets. Some parents of autistic children have written movingly about the positive impact of animals on their child’s development while others report animal-related fears and anxieties. Because Dylan falls into the latter of these groups I have been careful about introducing pets to the home. In order to give my daughter the experience of caring for something, however, we bought her some fish. My daughter used to collect the metal figures which museums sell. She also used to enjoy (and had a talent for) hand painting them. When we bought my daughter some fish, Dylan decided that these figures had to be thrown into the tank with Aristotle and Archimedes.

Dylan has always taken pleasure from throwing things into water; I think he enjoys the light and sound and watching the water move around an object (I’ve written about this here). For many years Dylan would throw stones and pebbles into the toilet; dropping metal figures into a fish tank therefore didn’t seem so strange to me. Not surprisingly, however, my daughter became upset every time she had to fish one of her figures out of the tank. Understandably, she was even more upset when she went in her room one day to find Archimedes was dead.

My daughter claimed that the toxicity of paint leaching into the water from her metal figures had killed her fish. In an age of lead-free paint I was sceptical but couldn’t rule out the possibility that Archimedes had been hit by a Viking. It can’t have been an easy life for a goldfish, being periodically bombarded by fistfuls of soldiers. Archimedes was buried under the Cricket-Bat Willow tree, and cyclamens planted out to mark his grave. This was my daughter’s first dead pet: job done I thought to myself.

Once I Caught A Fish Alive…

Later, I remembered that there had been an incident with a goldfish earlier in Dylan’s life. When he was four Dylan went to a local mainstream nursery for a couple of terms. He was part of an integrated resource but transitioned through the main nursery to specialised activities. The nursery had a pet goldfish which attracted Dylan’s attention. Dylan’s aim, the whole time he attended that nursery, was to remove the lid of the tank so he could splash, throw or catch the goldfish.

One day the class goldfish was missing. Dylan’s teacher, noticing Dylan was holding his face oddly, discovered the goldfish carefully concealed in his mouth. I say ‘carefully’ because it was alive; Dylan was not, it seemed, intending to swallow. At the time I found the incident vaguely amusing but also horribly demoralising. How could Dylan do that to the class pet? Didn’t he care about the fish or the feelings of others? Was this the autistic lack of empathy I had read about?

Six, Seven, Eight, Nine Ten…

Over time I came to believe that Dylan had an excess rather than a deficit of empathy (I have written about this here). I cannot know for sure what Dylan feels of course; the observation is based on my sense-making of incidents, events and moments in his life. Living with autism is a bit like being a detective. I spend my time hunting for clues. I assemble pieces of information which don’t fit together but I keep hold of them in case I can use them later. I have bits of metaphorical string and paper stuffed in drawers all over. Although I try not to throw anything out I sometimes forget about things or a drawer gets stuck. Sometimes, though, a new experience acts like Open Sesame and things come together with new meaning under the sudden light. And something happened recently to make me re-think Dylan’s interest in fish and affirm my belief in his capacity for empathy.

Last month, during a holiday, Dylan and I were in Mallaig. At the harbour we passed a fish warehouse and I suggested to Dylan that we stop and watch fish being unloaded and packed. As we approached, however, I felt Dylan stiffen next to me; he strained hard against my steering arm, pulling me away and back towards the boats. I thought Dylan might be temporarily changing route to avoid a dog but he persisted. The suddenly I recognised what was happening; Dylan’s eyes were closed, his head turned to one side, his body stiff. Dylan’s reaction to the fish warehouse in Mallaig was identical to one I had been battling with for years in another location: the supermarket.

Then I Let It Go Again

Dylan has always struggled with supermarkets. When he was young I quite often had to be rescued from shops where Dylan had gone into meltdown. When I say supermarkets I don’t mean all of them; one of the things which has puzzled me over the years is why some are a trigger and others are fine. Because Dylan’s behaviour wasn’t consistent I persisted with supermarket shopping but at some point gave up and shopped alone or online instead.

In the last few years I’ve reintroduced supermarket shopping because shopping for food is a life skill which Dylan needs. While it is not something we do often, every four to six weeks Dylan and I go to a supermarket. Mostly this has gone well but in two of the five supermarkets we use Dylan gets distressed – not to the extent he did when he was younger but enough sometimes for us to change plan or abandon. Dylan’s physical reaction at these times is identical to the response I got to the fish warehouse.

In Mallaig I had found the missing piece to the supermarket puzzle: the two supermarkets where Dylan gets distressed have fish counters (the others don’t). While I don’t use the fish counters, in one of the supermarkets the fresh grapefruit juice is adjacent to it and in the other supermarket the fish counter is at the end of the fresh pasta aisle. Dylan has no interest in grapefruit juice so refuses to even accompany me down the aisle in that particular supermarket, requiring me to sprint and grab the juice while looking over my shoulder, not taking my eyes from Dylan. In the other supermarket Dylan’s desire for pasta is enough to get him past the fish counter, but in obvious distress. Looking back at supermarkets I have been rescued from, I am pretty sure there was always a fish counter.

So I pieced this together in Mallaig in the sudden light. I thought about how Dylan loves living fish, recalling how on a trip to London Zoo he had spent ages in the Aquarium. I’m sure that part of the attraction for Dylan that day was finding Nemo; I’ve argued elsewhere that Disney films have played a major part in his development. Dylan is especially drawn to underwater sequences with fishy, swimmy things; he’d hate it, I’m sure, if the fish he loves stopped swimming.

I can see now that a fish counter would be pretty challenging for Dylan. I am not including a photograph of one here because this is a blog for Dylan and he likes to help choose and look at the pictures. I am going to ask you, therefore, to try and visualise a fishmonger’s or supermarket fish counter. If you enjoy eating fish and the image is a positive one for you, try to consider why it might be distressing for Dylan. I don’t know whether or not Dylan understands the concept of death, but perhaps he can smell it. I wonder if perhaps the eyes of the fish would trouble him. Mostly, though, I imagine that Dylan would be upset that the fish – which he loves so much in Disney films and picture books – are not swimming. Dylan is sad, I suspect, because the fish do not seem happy. This, surely, is empathy?

It has taken me a long time to understand something that Dylan has been trying to tell me for years. I know that Dylan communicates through his behaviour but I don’t always understand what it is he is trying to say. Having two makaton signs for fish could, I now realise, be useful after all.

References:

MacCulloch, D. (2013) Silence: A Christian History. Allen Lane
Makaton Core Vocabulary: Symbols Pocket Book 1
Makaton Core Vocabulary: Signs Pocket Book 1

 

Images:

Monks in south choir at Cluny wait silently,  http://www.aedificium. org
Fishy photographs taken  by me at London Zoo Aquarium (Easter 2013) and in Mallaig (May 2014).

Was Your Stay Planned Or An Emergency? Hospitalisation and autism

I hadn’t planned to write on this topic but my week took an unexpected turn. After developing symptoms of meningitis I was admitted to hospital for observations and to begin treatment in case the diagnosis was confirmed. Happily all the test results so far are clear. I feel much better and have been allowed home to care for Dylan while continuing treatment as an outpatient. Being in the hospital gave me space to reflect on the implications of medical emergency for autistic people and their carers and in this post I re-visit Dylan’s hospitalisations in order to draw out positive practices and challenges.

The Challenge of Medical Emergency

Was your stay planned or an emergency? the hospital administrator asked me last week. Emergency, I replied, remembering how one of my first reactions to being told to go to hospital was ‘thank goodness this is happening on respite night’. Getting sick if you’re a carer is problematic; it’s difficult to rest and hard to care. In a situation where you aren’t able to go on caring the best scenario for the person with a disability is that they can be somewhere familiar or that the emergency leaves their routine unchanged. Last week, therefore, part of me felt lucky.

Although the emergency focused on me rather than Dylan, he would have found the situation difficult had he been with me. Medical emergency is challenging for Dylan in two ways: firstly the unpredictability of the situation is problematic and secondly Dylan is uncomfortable in clinical environments. I don’t think this is specific to autism, necessarily; there are plenty of non-autistic people with medical phobias and some who avoid going to hospitals even to visit. There are also lots of people who dislike specific medical procedures, such as needles, and some who avoid all interventions including drugs. Why should I be surprised if Dylan has similar reactions? There may, however, be specific features of the medical environment which explain Dylan’s discomfort. Furthermore, while non-autistic people may manage their anxieties by avoiding medical treatment, providing this opportunity to an autistic child or adult with a learning disability raises ethical issues and requires judgement and courage.

Reassurance and Support

Since his hospitalisation for meningitis as a baby (which you can read about here) Dylan has received treatment for medical emergencies three times. On one occasion, when Dylan was 13, this was due to illness. Dylan presented with symptoms which in another child may not have given cause for alarm. Had it been my daughter, for example, I would have been able to ask her how she felt and make judgements about the seriousness of her condition on the basis of her responses. With a child who is ‘non-verbal’ and has a learning disability, however, this is not an option. It is only in the last few months that Dylan has learned the word ‘sick’ and connected it with his ‘tummy’, and even now I’m not convinced he is applying it to illness (I suspect he might be using it as a word for hungry).

Throughout Dylan’s childhood I have had to rely on observational data when making judgements about his health. In this situation I have sometimes wanted reassurance from doctors that my non-professional judgement was OK. So when, on this occasion, Dylan collapsed and briefly lost consciousness I decided to get him to the hospital. This is an example of me accessing medical services for support; although being at the hospital made no difference to Dylan’s care (he wouldn’t accept any intervention) I found being there helpful. Carers of learning disabled and non-verbal children may sometimes need this sort of reassurance and support from medical professionals.

Blue Glass

The other two occasions when Dylan was hospitalised were due to accident rather than illness and both times were a consequence of him having ingested non-edible substances. These incidents are linked to Dylan’s disability in that ‘pica’ (eating non-food items) is something which some autistic people demonstrate. Dylan likes to mouth, chew and sometimes swallow a range of substances including paper, cardboard, plastic and glass. Because this is something which is known about Dylan, these incidents could be regarded as arising from lack of supervision, though the reality of caring for someone with high levels of need is that accidents can still happen.

At the time of the first incident Dylan was seven years old. It was shortly after Christmas and I’d taken care to supervise Dylan around the tree. When I took the tree down, however, I decided that I didn’t want to put away a blue glass icicle. I’d been enjoying it on the tree and thought it un-Christmassy enough to hang permanently in the bay window. So that is what I did, without considering that it might be a hazard. Later that week I walked into the living room to find Dylan sitting on the sofa munching his way through the icicle having climbed up to reach it down from the bay. It was mostly already eaten; just the bulbous globe of the bottom of it posing more of a challenge to Dylan’s chomping. I remember the measured panic I felt, battling to stay calm and deal with the situation while feeling complete horror that my child had eaten glass. Even at this point I was aware of a voice in my head telling me that however bad I thought the situation, it would get worse; although this was the first emergency since Dylan’s autism diagnosis I knew he wouldn’t tolerate any medical intervention.

Letting Dylan Decide

I knew this because Dylan had consistently resisted all health procedures and treatments; since his autism diagnosis I hadn’t been able to administer a single dose of Calpol, take his temperature, put on sticking plaster or apply cream. Dylan would not drink or eat anything in which powders or other medicines had been concealed, even if they were (allegedly) colourless, odourless and tasteless. Various attempts at medical observations had been made during visits to clinic. We sometimes managed to weigh and measure Dylan but were never able to approach him with a needle (to take blood). An attempt to conduct an ECG when Dylan was experiencing ‘absences’ failed due to his refusal to wear the cap and clips. Determined to involve Dylan in trials of medical and alternative remedies I had persisted with the administration of some tablets and liquids by syringe. While this was occasionally successful I had stopped these by the time of the blue glass incident, judging the distress it caused not worth the promised benefit.

As noted previously, resistance to medical treatment is not the exclusive domain of autistic children. My daughter, for example, had a terror of needles. The practice at the Steiner Kindergarten she attended was that the children moved onto sewing having completed a pom-pom. These crafts were linked to key stages in child development and intended to support specific gross and fine motor skills as well as corresponding with socio-emotional maturity. The Kindergarten leader and myself were baffled when my daughter refused to move onto sewing with the rest of her peers, preferring to begin another pom-pom. Many weeks later, weary with winding wool around the enormous circles of card we had given her, my daughter explained that she didn’t want to move onto sewing in case she accidentally pricked her finger. She didn’t want to fall asleep she told me – she really didn’t want to fall asleep for all that time.

If the story of Sleeping Beauty should affect my daughter so powerfully, how much more might this be the case for my autistic son? I have written elsewhere about the extent to which Dylan appears to learn from Disney and it’s possible that this may be the source of his fear of needles. Whatever the reason, Dylan had determined his own relationship with the health service which was that there would be no medical treatment or intervention. The blue glass incident was important in that it was the first time his preference was going to have to be challenged; my child had eaten glass and doing nothing was not an option.

Look But Don’t Touch

As predicted Dylan did not allow the hospital doctors to make any medical observations following the incident; they couldn’t take blood samples, monitor blood pressure or temperature or examine him physically. The only observations which proved possible were visual. Clearly this is challenging for a hospital environment where protocols involve taking basic observations of patients. However, I have always found staff to be understanding and flexible when treating Dylan. A positive outcome of the blue glass incident was that we discovered Dylan was prepared to accept other procedures that didn’t involve touch, such as x-ray.

This reminds me, again, of the importance of sensory experience to Dylan. In the absence of linguistic or cognitive supports to understanding, Dylan was using his emotional and sensory intelligence. For him this meant resisting physical contact, perhaps in order to maintain his boundaries. This makes sense to me in the context of pain and anxiety when it is natural to withdraw and to defend your physical space and self.

The x-ray pictures showed the slivers of icicle in Dylan’s digestive system but these were not felt to be cause for concern; he had not cut his mouth on the glass and the pieces he had swallowed would pass through his system without risk of blockage. Dylan tolerating the x-rays had an unexpected benefit too; they revealed something of more concern to the doctors than the Christmas decoration. Dylan, apparently, was chronically constipated. From a medical emergency, then, an opportunity emerged to monitor Dylan’s health more generally. It didn’t make a difference to Dylan in that he detected and rejected laxative powders wherever I hid them. However, it raised our awareness of Dylan’s digestive system and prompted increased efforts to vary Dylan’s diet.

Bean Bags

I had stopped worrying about Dylan’s bowels when one day (when he was around twelve years old) I was shocked to discover enormous ‘flowers’ in the toilet. The blossom-like structures filled the whole bowl. Stunned, I telephoned the respite provision from which Dylan had just returned. They had also found the toilet flowers and had traced these to another young person. The source of the flowers were the bean bags in the lounge; Dylan and the other child had found a way to remove the polystyrene balls from the inner bag and had consumed some of them. They had passed through the digestive system easily enough but were unflushable and had absorbed water to produce these huge flowers.

Although it was reassuring that the balls had passed through it was obviously not something we wanted to happen again. This became a frustration throughout Dylan’s teenage years. Periodically I would find polystyrene balls in Dylan’s pockets and remind the school and respite provider of the risk to Dylan. However, when Dylan was 18 he came home from school one day strangely quiet. In his home-school book a member of staff (not realising the implications) had described how Dylan had emptied polystyrene balls from a bean bag. I had barely had chance to check Dylan’s pockets before he started vomiting.

Dylan had to go to adult A&E this time. Once again I was impressed by the adjustments made for Dylan which included bringing Dylan forward in the queue, allocating us a private room and not attempting to make observations which Dylan didn’t want (temperature, blood pressure etc). The other thing which staff realised was that it was better if they could support me to do the nursing as I was Dylan’s trusted adult; they explained what I needed to do and supported me with his care through the night.

Duty of Care

Tired and Anxious on the Equinox

The bean bag incident was more serious than the blue glass. Dylan had consumed large quantities of polystyrene balls which meant there was a risk of blockage. If this were the case, the situation might require surgical intervention. I knew that my duty of care to Dylan meant that if this was what was needed medically, I would have to over-ride his preference for zero intervention. No parent would want to be in this situation. My relationship with Dylan is built on trust and advocacy – being put in a position where I might have to break that trust or act against his will (even if this is necessary or in his best interest) is distressing. Fortunately on this occasion Dylan was again amenable to x-rays and on the basis of these the doctor was happy not to operate. While the medical intervention which Dylan will tolerate is minimal, so far it has proved to be enough.

Last week in the hospital my main worry was what the implications for Dylan might be if my tests for meningitis came back positive. That fear has receded now, but on Thursday night I lay awake turning over in my head how the doctors could offer Dylan prophylactic treatment without using a needle. Was there a penicillin-based cream, I wondered, which I could persuade him to rub on his body? Might he accept an oral dose perhaps? Only recently, and out of the blue, Dylan had pointed at the medicine cupboard and said ‘Po Dy-an, meh’. Stunned, I had opened the cupboard and offered him a spoonful of cough medicine which, after a bit of hesitation, he swallowed. Last week I clung to the memory of that 5ml hoping it might prove timely paving for penicillin if required.

Turning Emergency To Opportunity

Dylan relaxing in the Hospital

It’s likely that there will come a time when Dylan needs medical treatment which goes beyond the visual investigations he currently tolerates. It’s also possible that at some point I may have to support him through an intervention which he requires but doesn’t want. It’s not easy to prepare for these scenarios. This week, however, I have tried to capitalise on events by involving Dylan in my out-patient appointments. Dylan has watched the nurses insert and remove butterfly needles in my arm and has talked to me about the ‘meh’ making me better. I have taught him the signs for injection and medicine. The nurses have given Dylan a positive experience of the hospital environment and procedures; he is fascinated by the idea that there are beds in the building and by the variety of medical equipment. Dylan has enjoyed our visits and more progress has been made to lessen his anxiety about the medical environment in the last week than ever before. Hopefully, in this way, I have turned an emergency into an opportunity.

We usually access medical services in a non-routine and unpredictable way. An emergency situation is not a good learning environment and it would be surprising if autistic children and adults developed positive feelings and confidence from such a context. Perhaps there is more we could be doing, on a routine basis, to support children and adults like Dylan to access medical care. In writing this post I have been struck by the following issues specifically:

• the medical environment may present sensory-based challenges for some autistic people
• medical investigations tend to be touch-based which some autistic people may find difficult
• knowledge of medical procedures may be based on learning from fictional sources (such as film) and a potential source of anxiety
• where zero or minimal intervention is a preferred option carers need support from professionals to achieve this
• where treatment is required the relationship between carer and autistic person may face specific challenges
• carers get sick too!

Thank you for reading
I wish you emergency-free days!

Do (Autistic) Children Believe In Father Christmas?

My sister and I stayed up one Christmas Eve to catch Father Christmas. We must have been young enough for him to be plausible (I was six, perhaps, and my sister nine) and although I suspect my sister was already questioning the Santa story,  I still believed in reindeer and sleighs.

We shared a room so it was easy to discuss strategy.  Although the plan was that we would stay awake, I fell asleep. I was woken in the night by my sister shaking me.  It was very cold and the house was silent. My sister was whispering  to me to get up out of bed.  She had heard something, she told me. She thought he might have been. I remember that I was anxious. I wasn’t sure that I wanted to catch Father Christmas after all. My sister led me downstairs, shushing me and reminding me about the creaky stair.

Although there was no sign of him, Father Christmas had indeed been;  a ‘big present’ had been left beside our pillow cases, which had been filled with small presents. I don’t know who it was suggested that it wouldn’t hurt to open ‘just one’ , although I think we both knew that we ought not to. And I don’t know how it happened that at some point one of us went to fetch our younger brother.  Whoever it was, they must have been very quiet and remembered that creaky stair. It was just breaking dawn when I realised, with an empty feeling, that I didn’t have any parcels left to open.

Disappointing

I recall that Christmas as probably the unhappiest of my life. I can still remember the look on mum’s face when she came downstairs and saw the wrapping paper strewn across the floor. My sister and I knew that it had been wrong not to wait until morning for our presents but didn’t realise how important it was that our parents should witness us unwrapping the gifts. I didn’t understand why mum was so upset or why everything about Christmas felt so miserable that year. I was too young to understand that my parents had worked and saved to buy us presents. I thought they  were from Father Christmas.

I realised that Christmas that my parents were disappointed, but my belief in Santa survived the incident intact. It must have been the following Christmas, or maybe the one after, that my belief in him was shaken. That year I was opening the presents from my pillow case with mum at my side, watching on. As a child, my only interest was dolls. I had seven which I acted out narratives with all my waking hours. The dolls were real as family to me.  My granddad made furniture for my seven dolls and, until I could knit and sew myself, mum and grandma were responsible for making them clothes. The clothes were ‘made to order’. I found pictures of outfits I liked and ordered adaptations for my dolls. Mum somehow found the time to produce my doll clothes as well as look after the three of us.

The clothes mum and grandma made never disappointed. However this particular year they were responsible for shaking my belief in Father Christmas. Unwrapping my pillow case presents I exclaimed with delight to discover an outfit I had particularly coveted.  I can still visualise apricot wool with ribbon at the neck, though I don’t remember which doll it was for.  Mum was watching me for a reaction. She need not have worried; it was my best present and better than whatever ‘big’ present I had been given that year.  I didn’t thank her though. Instead I told her (thinking that she’d be pleased) that she didn’t need to make it for me after all.  Look!  Father Christmas had known exactly what I wanted.

Adults can disappoint children just as children can disappoint adults. Mum could have left it there, glad that I was happy with the present and happy to nurse her secret. But she didn’t.  She said: Your grandma made that for you Elizabeth. You can thank her later when she comes. My grandma? How did a present from her get into my pillow case? Why didn’t she just give me the present when she came for lunch? But I thought the presents in my pillow case were from Father Christmas I said. Some of the presents were from family, mum told me.  This was news to me. Which ones were from family? And how did they get in the pillow case? Did Santa bring them on his sleigh? How did he get them? Nothing added up. I didn’t tell mum, but I didn’t believe in Father Christmas after that.

Receiving

I didn’t fully appreciate the pleasure of giving until I had children of my own. Once I realised how much I wanted to delight my children (and to witness their pleasure) I understood how disappointed my parents must have been the year we opened our presents without them.  I learned this lesson with my heart as well as head because by then I had a child who rarely showed any interest in presents. Giving and receiving gifts can be a challenge for some autistic children. For years Dylan showed no interest in presents and the gifts he received would remain untouched.  He would run screaming from the room at the suggestion he might unwrap a gift, arm clamped over his head to cover his ears. Eventually we would try to help Dylan to unwrap his gifts, hand on hand. I remember that he would often have his head turned away while we tried to help him remove the wrappings, as if not wanting anything to do with the present.

Christmas Eve 2012

Looking back I can see that we were doing a lot of things wrong. I don’t think we realised quite how difficult Christmas can be for an autistic child. Now I understand that the sounds, lights and smells of Christmas must have created terrible sensory overload for him. The disruption in routines, especially around meal times and the arrival of visitors, must have been very difficult. And on top of that we were making demands on Dylan to be present and to interact with us (i.e. to unwrap a gift and show some interest in it).

At some point there was a development in Dylan’s response to the gifts he was given; instead of not showing any inclination to open them, he would unwrap them at high speed without looking at the presents. In increasingly record time, Dylan tore through his parcels each year while I desperately tried to make a note of who had given what to him so that I could thank them. It was as if Dylan had understood what was expected of him, but wanted to reduce the amount of time spent on the activity to a minimum. Anyone present at this high speed unwrapping might have been disappointed by Dylan’s apparent lack of interest in their carefully-chosen gift. However, Dylan would return to some of them in his own time.

I can’t remember being disappointed by these experiences but I’m sure that I must have been. It’s natural for parents to want to see their children happy at Christmas and Dylan’s unhappiness and non-participation must have made me sad.  My mum, though, was marvellous:  the woman who had been so upset with her own children for unwrapping their presents early was now a model of patience. I am glad that as well as showing parental disappointment to me when I was a child she was able to show me parental acceptance when I became a mother.

Giving

Taking Christmas Outdoors

Over the years I have adjusted the way we spend the holiday so that it is low arousal and Dylan-friendly. Dylan enjoys Christmas now. He still waits until the end of the day to open his presents but he unwraps them himself and at a reasonable speed. He responds to his gifts, however, without reference to the social conventions of giving and receiving.  Dylan’s reaction to a present is straightforward. If he’s interested in it he might hold on to it or take it to his room. Items he isn’t interested in will be dropped or passed to me. Dylan responds to the gift rather than to the giver.

Dylan doesn’t mean to be rude by not acknowledging or appreciating a gift. Because he is incapable of deceit he isn’t able to feign thanks or pleasure. All this means is that we get a more authentic response from Dylan than from the other people we give gifts to (some of whom probably don’t like our gifts much either). I find the emotional honesty of autism and the authenticity of Dylan’s response to  others refreshing.

Although Dylan now understands that he will be given presents to open at Christmas, he hasn’t yet grasped the idea of exchanging gifts. Dylan is a generous person who shares things voluntarily with his sister and me.  However, the practice of giving gifts at Christmas seems to be very difficult for him. Although I have involved Dylan in selecting, wrapping and giving to carers, friends and members of the family for many years, he continues to have difficulty with this. Last week he unwrapped presents I had sent in his respite bag for his carers, and he wanted to bring them home again when I collected him.  Earlier in the week I found the evidence in his bedroom of a present which he had apparently made for me but which never reached me (it was edible). So in terms of the giving of gifts, we still have some way to go.

Believing

Much of Dylan’s knowledge about Christmas comes from his children’s books and the Christmas films he watches. Santa is ubiquitous and I’ve wondered whether Dylan’s difficulty with giving gifts is because the only concept he has fully developed in relation to Christmas so far is that of Santa – and there is nothing in the Santa story about children giving presents to adults. Also, because of his learning disability Dylan is functioning at around 5.5 years old cognitively;  I’m not sure that I understood the concept of giving at that age.

‘Boy’ and Santa in Polar Express

I’m pretty sure Dylan believes in Father Christmas and that his autism and learning disability are responsible for maintaining this belief beyond his chronological age. So this year, once again, I’ll be celebrating Christmas with Dylan and Santa. One of Dylan’s big passions is Polar Express. He adores the protagonist in the story, who he calls ‘boy’, and is particularly interested in boy’s dressing gown.  Dylan has never had a dressing gown before but I’ve decided that this year it will be his ‘big’ present from Father Christmas. It occurred to me that I should try and match this as closely to the Polar Express character as I could, so I took a photo with me last week to shop for a dressing gown and slippers for Dylan.

I think the dressing gown I bought is a pretty good match.  I’ve no idea whether it will get dumped on the floor when the wrappings come off or if Dylan will want me to help him on with it straight away. If Dylan likes the present then it will deepen his appreciation of Santa rather than his mother and that’s fine by me. My only worry is that if Santa has matched the dressing gown too perfectly, Dylan might be looking out of the window all night, waiting for the Polar Express to stop outside our house.  And if Dylan is disappointed – well Santa will just have to try harder next year.

Merry Christmas to those of you who celebrate

Happy New Year to all

from Liz and Dylan

Thank you for supporting our blog this year

 

Is My Autistic Boy My Son?

I’ve only very recently started referring to Dylan as my son.  For the first 18 years or so of his life I called him ‘my boy’; until the age of around 11 he was ‘my little boy’ and more recently he’s been ‘my big boy’. Of course I understood that for some purposes I needed to use the category ‘son’ – in official documents which asked me to identify our relationship to each other for example – but I preferred not to use the s word if possible.

The word ‘son’ describes a socially constructed role. The meaning of the role may vary over time and across cultural groups but in each society there is agreement about what the role involves.  Our understanding of ‘son’ (and other social roles) is reinforced through powerful socialisation agents such as the family, school, religion and the media.  So while nobody has ever explained the role of ‘daughter’ to me, I have developed a pretty clear idea of what this entails in the society and community in which I live.

I’m frequently struck by the use of the words son and daughter by families and midwives at the moment of delivery:  ‘Congratulations you have a son’ or ‘We’ve got a daughter’.  There’s a voice in my head which counters: ‘No you have a baby boy or girl who may, in time, take on the social role of son or daughter’.

I may argue that a newborn baby isn’t yet a son or daughter, but would I describe the woman who has just given birth as the child’s mother? Mothering is also, after all, a socially constructed role; there is agreement within society about what it involves (that it is a nurturing and educative role) and about perceived transgressions of the role (such as the abandonment of a child).  As girls are socialised to the role of ‘mother’ long before they have children of their own, there is a sense in which they are prepared for motherhood before the delivery of their children, unlike the newborn baby who has no awareness of the social roles within the society it has been born into.

So what are the implications of this for autism? I would suggest that for someone who is not only autistic but who has a communication and learning disability (‘intellectual disability’ in the US), social roles may not necessarily be clear at all.

Autism and Gender

Sociologists have suggested that the socialisation of children to gender roles begins soon after birth.  When my children were born I was determined that I would intervene in some aspects of this process. While I didn’t want to isolate my children from their peer group or from some established norms, I did aim to challenge gendered responses to childhood and education. Both my children were given gender-neutral toys when they were young, were spoken to in gender-free language, and were encouraged to make choices on the basis of their interests rather than according to beliefs about what was ‘gender-appropriate’.

Challenging established practices around gender isn’t easy as I quickly discovered. When my daughter was born she was instantly wrapped in a pink blanket by the nurses. I asked whether it would be possible to find an alternative colour, thinking I may as well start as I meant to go on. The nurses reacted with astonishment but, after attempts to distract me from the request failed, produced a green blanket. They were clearly, however, not comfortable with this; all the other babies in the ward were wrapped in either pink or blue waffle blankets.  By the time someone took this early photograph of my daughter, a nurse had tried to re-establish the pink.

This was the first of many incidents I encountered while bringing my daughter up to be free of what I considered  stereotypes for girls. My ‘little boy’, meanwhile, was growing up marvellously free of any conception of gender whatsoever, quite effortlessly and with absolutely no input from me.  Dylan is now aware of biological sex difference – an awareness which I think developed around the time he started needing to shave – but for many years I don’t think he thought of himself as ‘a boy’ particularly.  Dylan certainly wasn’t aware of the roles which society thinks of as ‘appropriate’ for boys and girls; he would dress in, behave and interact with whatever interested him, regardless of social conventions around gender. For many years, therefore, I thought of Dylan as ‘gender free’; for me this freedom has been one of the celebratory aspects of living with autism.

I remember an incident when Dylan was young, perhaps nine years old. My mum and I had taken the children to York for the day, an ambitious outing by train which had left us all tired and Dylan a little fretful at the end. Visiting York Minster in the late afternoon there were signs that it was becoming too much for Dylan and we decided to go to a tearoom hoping this would re-orientate him.  As sometimes happens, we made the decision five minutes too late; Dylan was already moving into meltdown as we entered the cafe. We happened, that day, to be assigned a magical waitress; a young woman who may or may not have had personal experience of children and/or children with autism. What she had in abundance, though, was an ability to understand and to communicate without language; she noticed Dylan looking at her beads so took these off and gave them to him. The beads were wooden and rough-hewn, threaded on elastic and looped around her wrist. They seemed to calm Dylan like juju beads.

That afternoon tea and cake turned from a potential meltdown into one of the high spots of the day in terms of our sense of well-being. As we left the cafe, heading for the train home, I tipped the waitress and returned her beads. ‘No’ she said: ‘I would like the little man to have these.’   And so she wrapped her beads around Dylan’s wrist and for months afterwards he wore them, and sometimes I did, and we talked about the York waitress until the elastic snapped and we lost them.

Disney Princesses

As well as letting Dylan wear beads I have, over the years, bought toys and resources for him which were clearly aimed at girls rather than boys. I have previously written about Dylan’s love of Disney, a passion which for a long time has been his main interest. At birthdays and Christmas, wanting to give Dylan something that would capture his attention, I have been driven by whichever Disney movie is his current favourite. This has often meant searches for items based on films which are gender-marked female and which feature a princess narrative.

One of Dylan’s enduring interests has been Sleeping Beauty. He seems to be attracted by a number of ingredients in this film including the presence of fairies (flying people have long been exciting and seem to underlie his current love of Peter Pan). One scene in particular makes Dylan squeal with pleasure; there is a fight between the fairies as to whether to decorate Aurora’s dress, and later her cake, pink or blue; using their magic wands to alternate the colour, the fairies squabble:  ‘make it pink!’ ‘make it blue!’ ‘make it pink!’ ‘make it blue!’ These scenes seem to me to symbolise the gender issue brilliantly- though Dylan probably likes them because of the colours and the cake.

How much influence might these Disney princesses have on children in general and on autistic children in particular? A recent review of the Disney film Frozen in The Guardian Film Blog notes that Disney’s writers are producing increasingly independent and ‘less compliant’ lead female characters. However Anna Smith, the reviewer, bemoans the animators’ continuing use of ‘tiny nipped-in waists, no hips, long legs, skinny arms, pert breasts, small feet and eyes three times the size of the male characters’. While congratulating Disney on the strong female characters at the centre of Frozen (an adaptation of The Snow Queen), and recent female heroes such as Merida in Brave, Smith argues: ‘when so many girls look up to Disney’s princesses as role models, surely it’s time for a rethink of the animation formula.’

If girls look up to Disney princesses as role models, what can autistic boys  (and girls) possibly make of them? In my earlier post I suggested that Dylan had engaged in social and emotional learning through his interest in Disney. His favourite films, I argued, had helped him to understand social relationships within a family and to recognise different emotions. Does the learning which I described Dylan as engaging in through Disney films extend to learning these stereotypical gender roles? Or even, given Dylan’s love of films with princesses, to him identifying with non-traditional gender roles?

During Dylan’s Sleeping Beauty passion I bought him a Princess Palace for Christmas. I thought it would be his heart’s delight but I have to confess that he showed little interest in it and I later donated it to a school fair, virtually unused. Also of only limited interest (though I can’t bring myself to throw it away) is the Snow White musical globe I bought for Dylan at age 13. As I make these reflections I realise that Dylan’s love of Disney films has not particularly translated to an interest in linked resources or toys. Whatever Dylan has learned from Disney, I don’t think it is about gender. Or is it?

Mannequins and Mothers

My sense is that ‘my big boy’ is starting to develop some recognition of social roles; Dylan has recently named a character (Geppetto in Pinocchio) as a ‘daddy’ and he sometimes recognises representations of mothers in storybooks. Dylan has been naming me by my social role (‘moo-ey’) for some time now and perhaps has some idea of the meaning of this label (i.e. that other people also have a mummy).  In the first couple of years of Dylan’s life, though, he wasn’t exposed to this role-naming at all.

I was one of those parents who wanted my children to call me by my name rather than by my role.  Sure I was the mother of my children, but I wasn’t only that; my identity as a person went beyond my mothering and, knowing how powerful language is, I wanted that to be acknowledged in what my children called me.  My children would, of course, know that I was their mother – but they didn’t have to call me mother. So when Dylan was born I called myself Lizzie. Dylan’s autism diagnosis at 23 months changed all that. I decided that I needed to simplify language and concepts and so I started to call myself ‘mummy’ instead. This matched the language Dylan was encountering in his picture books, the media and in society in general.  My daughter, just five months old at the time of Dylan’s diagnosis, inevitably shared in this re-naming.

Because of the severity of Dylan’s autism and communication ‘impairment’ it would be many years before Dylan spoke my new name. When he did he was around nine years old; an entry in Dylan’s home-school liaison book reported that he had hugged and said ‘mummy’ to a dressmaker’s mannequin that someone had positioned in the school foyer. ‘That’s a compliment for you’ Dylan’s class teacher had written in the book: ‘she’s very petite and no more than a size 6’ .

I am, I hasten to add, not a size 6. If Dylan intended to compare the mannequin to me that day it was not because it reminded him of me specifically, but because of the social role he perceived the mannequin to represent. Given the resemblance between the dimensions of mannequins and Disney princesses, I have to concede the possibility that Dylan may have learned more from Disney about gender and social role than he has from me 😉

 Images:
The film images are via Disney and the photographs of Dylan and me were taken by my mother; the other photos are mine.

Rudolf Steiner To Walt Disney: education and the spectrum of choice

I don’t remember exactly how old Dylan was when I realised that the only thing he was interested in was watching Disney videos but he must have been less than two years. Dylan’s films, books and CDs have been a constant presence throughout his life and at 19 they continue to be his main interest.

It’s taken me a long time to feel comfortable with Disney. I embarked on parenthood with other ideas: I had been determined that my children would play with simple toys and natural materials; occupy themselves in creative and imaginative pursuits; spend time outdoors; and engage with handcraft and art activities. Electronic gadgets, computers and television sets were to be avoided or strictly limited. I’ve no doubt that many parents of autistic children will be amused by this description. However, for many years I’d been attracted to the philosophy of Rudolf Steiner which emphasised a curriculum based on the creative arts and the development of imagination in young children through free play.

Although my preference was for Steiner education I realised that Dylan’s diagnosis might make it less than ideal so enrolled him in a Montessori Nursery where the structured approach was said to suit some autistic children. My daughter, meanwhile, attended a Steiner Kindergarten and I assisted there  when Dylan was at nursery. I remember one day a child brought Thomas the Tank Engine slippers to wear which lit up and ‘tooted’ as he ran around (the sort Dylan might like).  I watched the Kindergarten Leader become increasingly exasperated by the sound-and-light show until, eventually, she removed the batteries. My hunch  that Dylan would not find a Steiner environment easy was probably right, I thought to myself.

 Learning with Disney

On Dylan’s journey through the education system he has travelled almost as far as possible from my original ideological position. Apart from the Montessori Nursery and a year in an integrated resource, Dylan has attended special schools where his teachers have (quite rightly) focused on his key interests in order to motivate him for learning. This has inevitably meant that Dylan has had rich access to electronic gadgets, computers and television sets while there has been considerably less emphasis on wooden toys and natural materials, creative and imaginative play, and handcraft and art activities.  Dylan’s educational environment may have been quite unlike a Steiner school but I’m fairly sure that it was, nonetheless, an effective learning environment.  For children such as Dylan, Disney resources can be the most appropriate approach to motivating and engaging pupils in educational settings; certainly over the years Dylan appears to have been ‘learning with Disney’.

Because he has watched Disney films repeatedly, Dylan is familiar with details of plot and character which can be used to extend his social and emotional learning. I have used Disney characters to work on Dylan’s understanding of family; this not only reinforces social roles but helps Dylan make sense of the world. Although it is easy to criticise the stereotypical social roles portrayed in Disney films, for Dylan these have been a useful vehicle for understanding some of his most fundamental relationships (mother, sister, teacher, friend).

Because of the exaggerated but simple characterisation, Disney films are also useful for identifying emotional states. And because the Disney plots have moral content they can be used to rehearse concepts of ‘right’ and ‘wrong’ and to help Dylan to recognise danger and harm.  Some of the content in Disney films, particularly fairy tales narratives, have been criticised as inappropriate. Scenes such as the Wicked Queen giving Snow White the apple, however, Bambi running from fire in the forest and the Lion King being challenged by Scar, all capture Dylan’s attention enough to capitalise on his interest and exploit this for purposes of learning.   It is Dylan’s interest in Disney films which is key here; until I tried to address this social and emotional learning through film, Dylan had shown no interest in recognising or identifying feelings or relationships.

For other children, of course, this learning emerges from a variety of narrative formats; I remember watching the children make meaning of oral storytelling while at Kindergarten, for example. But this is not a method which works for Dylan. As a visual learner, Dylan responds to the colours and caricatures of animation. As well as vivid moving pictures, repeated viewings have been a key to learning for Dylan who seems to approach each new film by layering information. The first time Dylan watches a film he will often only sample it; the next time he may sample a different section or reinforce the sequence he has already sampled; the third time builds another section; and so on.  This layering proceeds over what may be many screenings before Dylan has a complete map of the film. This is a slow process of accretion and very different to the way many of us watch films (how often do we watch a film more than once let alone the hundreds of viewings which Dylan has made of his films?). However, once the process is complete the film is embedded in Dylan’s memory. In terms of potential for learning, this is a tremendous resource.

Finally, as well as visual content and repeated viewing of content, control of content seems to be important. Dylan likes to direct his viewing; I think he likes the predictability and reliability of a film which always happens in the same order, at the same pace and with the same voices (compared to a human being reading a story book slightly differently each time). I’d say that it is these four elements  – interest, visual content, repetition and control – which particularly support Dylan’s learning and which Disney is so good at providing.

 ‘It’s Off to Work we Go’

It took me a while to realise that Dylan was learning with Disney, especially as the learning can be unplanned and not always what I might want to teach.  For example, for years Dylan had ‘pulling people’s ears’ identified in his school behaviour chart, with a series of actions and targets set for re-directing and discouraging this behaviour.  I was always puzzled by the ear-pulling which Dylan seemed to do spontaneously and usually to people he liked. I made the observation that while the school may regard Dylan’s ear-pulling as inappropriate, I thought it was actually an act of affection. Then one day, walking into the room while Snow White and the Seven Dwarfs was playing, I caught a scene in which Dopey holds his lips up to Snow White for a kiss as the dwarfs leave for work one day.  Snow White,  preferring to kiss the top of Dopey’s head, takes him by the ears in order to re-orientate his face to the floor so she can do this. Suddenly the penny dropped; this tender gesture between Snow White and Dopey was one which Dylan had copied; he took people he loved by both ears, just as he had seen Snow White do to Dopey.

A much more worrying example of Dylan learning from Disney films took me a while to figure out. Dylan presents a particularly high risk around water as although he cannot swim he lacks sense of danger and in the past has flung himself fully-clothed into deep water and had to be rescued.  Around any body of water (harbours, lakes, rivers, reservoirs) I have to keep a very close eye on Dylan. So I wasn’t overly-surprised – though I was very alarmed – to find Dylan submerged in his bath water one day. I had left Dylan only briefly but this was long enough for me to find him under the water, holding his own head down. That day I yanked Dylan up out of the bath water coughing and spluttering; I resolved to not leave him alone in the bathroom, regretting the surveillance and lack of privacy for Dylan which this meant.  Another similar incident saw Dylan’s support plan updated to showers rather than baths; again, a huge loss for Dylan who loves his bath times.

This desire to be underwater started to spread to other watery contexts. On holiday Dylan would throw himself to the bottom of the sea, alarmingly. When I took him swimming he would spend the entire session attempting to go to the bottom of the pool. As a strong swimmer I wasn’t unduly worried about the behaviour in itself; what worried me  was that it seemed to be based on a desire to drown himself, rather than to swim.

I chanced, eventually, on the explanation for Dylan’s behaviour which was, again, to be found in a Disney film (or, as it turned out, in a variety of Disney films):  Nemo involves various underwater sequences where characters are miraculously able to breathe, talk and live without coming to any harm. Another penny-dropping moment; Dylan was trying to copy the behaviour of characters in his favourite films who he loved and wanted to be like.  Further research revealed that a scene in Pinocchio takes place underwater and a crucial scene in a favourite Studio Ghibli film, Earthsea, also involves an underwater sequence.  Unfortunately, these underwater scenes are always fairly glamorous; the characters have great adventures and it seems to me undergo some sort of transformation while in the water (an appropriate image, I suppose, for being re-born).

While Dylan throwing himself under water and pulling people’s ears may not be what I’d choose or encourage, they are illustrations of effective learning arising from motivation and consolidation through repeated exposure to the learning prompt. I am left wondering what else Dylan has learned through  film and animation?  Perhaps there are other things he does which I don’t understand because I haven’t got his intimate knowledge of the source material?

Bracketing the handcrafts

At the end of Dylan’s school career I was fairly confident that the decisions I’d made about his educational provision up to the age of 19 had been appropriate.  This didn’t, however, stop me from revisiting these choices as Dylan prepared to leave school.  Researching provision in my area I was delighted to find a community based on Steiner principles which offered education to adults with learning disabilities and autism. The first visit I made to the community was alone.  Everything about the visit charmed me; the activities included handcrafts such as weaving, pottery and basket-making as well as woodwork and horticulture. The classrooms and living areas were beautifully decorated with the distinctive Steiner colours, fabrics and natural materials. Community meals were sourced from the allotments and gardens. I walked around the centre that day as if in a honey-daze; it was so perfect I would have happily lived there myself.

I visited again soon after with Dylan. It never occurred to me that anything could interrupt the dream but – and you can perhaps tell what’s coming – I had an awakening.  Dylan very quickly grasped what was on offer at the community – or, more importantly, what was not – and exited at high speed, heading straight for the car park. It wasn’t so much that Dylan had little interest in the activities on offer as that he couldn’t find any evidence of the things he did have an interest in:  no TV Lounge or Computer room and no evidence of TVs in bedrooms either.  Dylan’s protest that day was very unsettling and frustrating for me but when I thought about it later  –  from Dylan’s perspective  – I realised that it had been ridiculous of me to shortlist a placement which wouldn’t support the one thing which mattered to Dylan more than anything else in the world. Dylan’s special interest is film and Disney is his passion: how could I possibly have ignored this?

This experience reminded me of how difficult it can be to bracket our own preferences when making choices on behalf of our children.  However, bracket them I must because it is Dylan’s life, not mine; while I can’t, and should not try to, overturn my values and beliefs when making decisions, I do need to filter these through the lens of Dylan’s interests and preferences.  Dylan’s life would be different and, I suspect, less happy without the gift of Disney; it would be wrong for me to take that from him.

Acknowledgement:

Images via Disney and QuotesDump.com (source of image of Steiner classroom unknown but appreciated).