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…




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

showroomOne 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.

soundonsight.orgI 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?


english.rfi.frOnce 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.


thechildrensmediaconferenceThe 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.


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

Showroom cinema by Mommy by soundonsight;Xavier Dolan by; interior of the Showroom by thechildrensmediaconference

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

caul 006For 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

Brittany 13 082When 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.
caul 003My 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

caul 002I 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.


Brittany 13 164And 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.

Kent August 2012 002I 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.


DSCF1291I 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

Brittany 13 006I 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.

material literacy 004The 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.


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


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

autumn journalLike 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.


books 001My 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.

books 002This 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.

books 004Parents 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’?


Berger and Conrad youtubeThe 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.

ordinary dinner   youtubeWhen 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.

* conrad and bethAlthough 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.


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.


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 🙂



  • 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]


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

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.

August 2014 056Living 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.

roseMy 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?


Canal day 009Here’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.

Canal day 006As 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.

Canal day 010All 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.


August 2014 067 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. 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.


trance2Dylan 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.


dentist1I 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 ( and the sight test chart (

That Fishy Feeling: autism and empathy

MonksInSouthChoirI 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.

London Lions 040In 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.

London Lions 016I’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.


London Lions 020Having 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…

London Lions 034Later, 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…

Inverness 2014 052Over 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

London Lions 046Dylan 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.

London Lions 032So 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.

London Lions 029


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



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

20140321_141307Was 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

20140322_143331I 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

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!