Autism And The Alphabet: Dylan and the ‘W’

Munch 003My last couple of posts have focused on Dylan’s love of paintings and my attempts to understand the role of art in his life. In order to do this I identified imagery which Dylan seems to respond to and constructed a therapeutic narrative around it. A comment on my last post, however, reminded me that I was making assumptions about Dylan’s viewing. How could I be sure Dylan was responding to the images in a painting? Perhaps he was attracted by the light or by a picture’s lines?

My initial reaction to the question ‘why don’t you ask Dylan what he likes about the paintings?’ was that I couldn’t. He (I mean we) don’t have the language. But the question set me thinking. Maybe Dylan was indeed gazing at darkness rather than thinking ‘rock’, or enjoying the quality of contrast rather than the thing I call ‘a cross’. I convert the light and the dark, the colours, shapes and lines to concrete nouns for Dylan but perhaps what he likes about the paintings aren’t the things I give him words for.

Maybe I need to view Dylan’s paintings with the part of my brain which sees spatially instead of with language. Rather than labelling objects in a painting I could offer Dylan the spaces and shade. Such an approach would fit with what I have already learned about the way he sees the world. Elsewhere I have described how Dylan sees hair on trees instead of leaves and tells me that the cheese is crying when I melt it. I have suggested that Dylan’s lack of language might allow him to experience phenomena more intimately and intensely than I am able to because he uses his senses rather than these inadequate words. Dylan’s perception of the world, I have speculated, may be right-brained whereas mine is left; where I see ‘curtain’ Dylan might see silver light spilling from a vertical edge.

See saw

W 005I must have been thinking about this a few days later when I picked up a magnetic letter from Dylan’s bedroom floor. Because I was about to say ‘Oh look Dylan there’s a letter’ or ‘look here’s a W’ when I remembered Elisa’s question ‘Why don’t you ask Dylan what he likes about the paintings?’. Could I be open-ended about the W? Could I ask Dylan what I had found on the floor?

Oh look. What’s this Dylan?

See saw

I stared at him in shock. Then I asked again.

See saw

You should have seen my face 🙂 I cracked such a grin. What a gift. Dylan sometimes hands me these, unasked for, but I might never have received this one if I hadn’t asked the question that way. The see-saw was my first open-ended gift.

Seeing W

wikipedia.orgDylan’s magnetic W is the same shape as the version produced by a keyboard: not actually ‘double U’ (as the letter is pronounced in English) but rather ‘Double V’ (as it is pronounced in French). Although this version of W is commonplace today, when I was a child it had curves not angles. In handwriting lessons we were taught to practice forming our Ws by joining Us together and moving our hand briskly and freely across the page, line after line.

UUUUUUUUUUUUUUUUUUUUUUUUUUUUU
UUUUUUUUUUUUUUUUUUUUUUUUUUUUU

Just like Dylan I made letters into pictures. My friends and I thought we were terribly risquĂ© when (collapsing in giggles) we decorated our UUs with squiggles and dots to turn them into bottoms and bosoms. Perhaps I didn’t see a see saw because of the cursive way we wrote our Ws but I can’t help thinking that had I looked carefully – as Dylan does – I might have seen a swing boat.

Hearing W

publicdomainpicures.netAs well as the mismatch between the visual ‘W’ and the heard shape ‘UU’ I encountered other problems with this letter as a child. I remember sitting on the back step of a friend’s house on a warm day one long school holiday. We had got the writing bug and were sitting in the sun with paper and pens. I don’t know how old we were – perhaps seven or eight, maybe a little older. I remember my friend asked her dad, working in the drive nearby, for a spelling.

How do you spell daffodil?

D- a- double f – o – d – i – l

I had never heard anyone use the ‘double letter’ device before. I remember I felt anxious about the letters I had heard but didn’t have the confidence to ask my friend’s dad to repeat them. I did my best but something seemed wrong with my word:  Dawfodil. It looked a bit odd. I wasn’t going to question my friend’s dad though.

Suddenly he was hovering above me, looking down at my page: ‘What have you got there?’, he asked, ‘Why have you written a W?’ He had said W I told him. He checked his daughter’s writing; she hadn’t made the same mistake. My friend must have heard the double letter expression before but it was unfamiliar to me; I had assumed a letter with a ‘double’ sound in it meant W. Afterwards I would use the double device triumphantly and often:

M – i – double s – i – double s – i – double p – i

I’d do well to remember the confusion and anxiety I felt about my dawfodil though; it might help me understand just a stamen of being Dylan.

Teaching W

W 003Because the names, shapes and sounds of letters aren’t intuitive or easy, attempts have been made by practitioners and publishers to develop teaching resources and methodologies. Whether or not these help probably depends on an individual child’s learning style. A kinaesthetic learner, for example, might respond to the Steiner approach to learning the alphabet through music, movement and drama. This method involves children physically taking on the attributes of each of the letters of the alphabet and embodying learning through the senses. The magnetic letters which I use with Dylan are also aimed at children who learn through their senses as they can be experienced by touch and smell as well as sight.

amazonw2As a phonetic method the commercial resource Letterland focuses primarily on sound. Available in a range of formats (jigsaw, books, video etc) it works through the association of each letter with an alliterative character (human or animal). So, for example, C is Clever Cat, J is Jumping Jim and W is Walter Walrus (though when my children were small it was Wicked Water Witch). Many children respond well to the Letterland alphabet – I remember my step daughter liked it and it really did seem to help her developing literacy. It doesn’t suit every child though; my daughter was lukewarm about it and it never held any interest for Dylan. Now, perhaps, I can understand why; Dylan doesn’t hear a Walrus, he sees a see saw.

Just as I put a  ‘w’ in daffodil because I thought I heard one, perhaps Dylan visualises see saws in words with w:

Yelloseesaw [Yellow]

Seesawonderseesawall  [Wonderwall]

Seesawindoseesaws  [Windows]

I have been wondering what else Dylan sees in the letters of the alphabet. One day I will ask him but not all at once as it would overwhelm him. I’ve tried to guess though – O could be wheel perhaps:

Twheelwheelkit  [Toolkit]

Wheelseesawl  [Owl]

Mwheelther  [Mother]

W 007Looking again

If Dylan sees letters as objects unconnected with the sounds they represent then it must be very hard for him to make sense of letters as signifiers. To my knowledge the only group of letters Dylan recognises is ‘Dylan’ and this is because he has been exposed to them as a sequence rather than as individual characters. What might be the implications for supporting literacy development in children and adults with autism and learning disability? Based on my limited observations of Dylan I would hazard that for some young people the ‘look say’ method might be a more appropriate approach than a phonetically-based system. Learning words certainly seems more effective than learning letters for Dylan and if I had his early years again this is probably what I would focus on. Then again, that way I might have missed the see saw…

W 014

Images:

The daffodils are via publicdomainimages.net; the swingboats are via wikipedia; the Letterland book is via Amazon and the other photos are taken by me. The picture of Dylan on a seesaw (aged three) was taken in France in 1997.

50 Shades Of Beige

macaroni cheeseIn a previous post I reflected that I didn’t pursue dietary intervention with Dylan when he was young because his autism did not appear to be exacerbated by food intolerance. I did try to intervene on more general health grounds but when this proved unsuccessful I resigned myself to Dylan’s diet being less than perfect. As a food-aware vegetarian this was an aspect of parenting an autistic child I found hard to accept; I learned to tolerate Dylan’s food choices, however, by trying to understand them.

50 shades of beige

baguettes| crumpets| English muffins| Belgian waffles| Scotch pancakes| brioche| croissants| pop tarts| cornflakes| white wraps| white rolls| milk| butter| white cheddar cheese| edam cheese| Dairylea slices| fromage frais| yoghurt| potatoes| bananas| apples| cheese pasties| macaroni cheese| spaghetti| tortelloni | cheese sauce| cheese pizza| cheesy potato cakes| cheese pancakes| quorn nuggets| chips| veggie fingers| vegetarian kievs| vegetarian schnitzels| vegetarian meat balls| vegetarian sausages| Yorkshire puddings| vegetarian escalopes| Pringles| quavers| mini cheddars| angel cake| fondant fancies| donuts| syrup| ice cream| gingerbread men| millionaires shortbread| cookies| white chocolate|

Food and the senses

Brid and Food 065Again and again, when trying to understand Dylan’s world, I return to the senses. What distinguishes Dylan’s foods is that they are largely colour-free, flavour-free and odourless. I use the term ‘beige’ to describe that neutral range of shades from pale straw through to caramel. Some of the more adventurous foods in Dylan’s list throw in a pastel: the pale yellow of a banana, a light green apple or the pink and lemon of angel cake. Essentially, however, Dylan’s meals are beige.

I photograph Dylan’s meals so that I can offer him food choices and it was through this I noticed the colours tend to be neutral. Fresh pasta would be ruined for Dylan by the addition of sauce: with one exception it must be served plain with a sprinkling of grated cheese. Pizza must be unadorned with no tomato sauce visible through the uncoloured cheese. Main course selections can be accompanied by Dylan’s one beige vegetable, served one way (chips).

Although Dylan wouldn’t dream of eating highly-spiced or smelly food he is fascinated by it. One of his few clear words is ‘marmite’; he frequently fetches the marmite pot from the kitchen and walks around with it, pretending to smell then saying ‘phewee’ while waving his hand across his nose. If I offer him a jar or bottle to sniff he will gingerly approach it, simultaneously intrigued and repelled. But eat or drink it he will not – and his taste buds are so finally tuned he can detect rogue substances instantly.

There are some surprises on the list though. Pesto for example. True Dylan picks out every single pine kernel, but the colour, smell and taste are for some reason perfectly acceptable. Building on this I have introduced mozzarella and pesto escalopes in a quorn range Dylan likes and have recently offered spinach and ricotta tortelloni; I figured Dylan might mistake the green stuffing for pesto (he is suspicious I think, but has eaten it a couple of times). I also like to give Dylan veggie fingers because I can sneak tiny pieces of carrot and pea past him (the only time Dylan’s vegetable-detecting radar seems not to work). The least bland food in the list is probably vegetarian kievs; these are a relatively recent addition to Dylan’s diet and give me hope that he may accept a wider range of tastes and smells eventually.

I am happy to support the aspects of Dylan’s diet which are linked to his sensory needs; I wouldn’t want to serve him foods which cause distress because of the way they smell, taste, look or feel. While this means Dylan’s diet is bland and repetitive, if he enjoys it and is basically healthy I don’t object. Dylan has developed strategies for selecting foods which meet his requirements for low sensory arousal.There is a kosher range at one supermarket, for example, which Dylan trusts.  If food producers try to excite and delight our taste buds, however, Dylan withdraws his custom; when Linda McCartney changed the sausage seasoning Dylan avoided other products in the range which had previously been his favourite.

Sugar and spice

needsweets.co.ukAlthough I fed Dylan a wide range of pureed fruits and vegetables as a baby he has not eaten a vegetable since (except for potatoes and the fragments of pea and carrot in veggie fingers). I assume his aversion to them is partly about colour. Dylan will, however, tolerate some bright fruits: strawberries, cherries, plums and grapes are now acceptable. I have wondered whether Dylan’s liking for these is linked to his love of sweets: they have acquired the status of honorary Haribos, perhaps. Because I should note that, in addition to the 50 beige foods, Dylan eats brightly coloured jelly-type and candy sweets if I let him.

As I have noted in an earlier post I am careful about Dylan’s intake of sweets; although they can be an effective reward as part of a behaviour training programme I am uncomfortable with their use. Given Dylan’s restricted diet I have felt a particular need to limit Dylan’s sugar intake; while I might not insist he eats the foods he has an aversion to, I can at least restrict unhealthy items he is unhealthily predisposed to. This was easier when Dylan was younger and I had more responsibility for his diet and food choices than I do now he is an adult. In the last couple of weeks this has become a potentially significant issue.

If you follow our blog you will know that Dylan has developed behaviours recently that have been causing concern. I have been keeping charts logging incidents but have struggled to find a pattern to the behaviours. Then, a couple of weeks ago, a woman who hadn’t met Dylan before came to assess him. I shared Dylan’s charts; she was interested and emailed later to say she had been racking her brain for possible answers. I might want to look more closely at food, she said – had I noticed that events often took place around meal times. Could Dylan be suffering from reflux? Feeling sick? Could he be diabetic perhaps? Had I considered spicy food? Or sugar perhaps?

milky bar wikipediaBecause the changes in Dylan’s behaviour had been so dramatic I had been looking for something in his life that had changed; now I was faced with the possibility that the behaviours were linked to something that had remained the same. That night I stayed up researching food intolerance and aggressive behaviour; a suggestion that cropped up again and again was sugar and, more specifically, white chocolate. White chocolate is Dylan’s favourite treat. He always picks a white chocolate egg at Easter. When we shop he chooses a milky bar. He selects white chocolate chip for the cookie tin. People who know Dylan give him white chocolate for a present. This had always seemed fairly innocuous to me.

The milky bar kid is strong and tough, and only the best is good enough
the creamiest milk, the whitest bar, the good taste that’s in MILKYBAR!

When I looked back through Dylan’s behaviour chart I found details which lent support to the sugar hypothesis: the day Dylan had a major incident coming down the valley he had bought an ice cream on the way up; a terrible attack one Sunday evening happened 40 minutes after Dylan had eaten a half bag of white buttons. I decided this was worth pursuing and moved Dylan on to a low sugar diet: no chocolate, biscuits, cakes, ice cream or soft drinks. Since making this change to Dylan’s diet there have been just two incidents compared to the previous pattern of almost daily incidents. Although I don’t think diet is a complete explanation for Dylan’s behaviour, I am persuaded that it could be part of it.

foodxAt the moment I’m reading Caroline Knapp’s Drinking: A Love Story, a memoir about getting sober. The book has encouraged me to reflect on my decision to give up drinking six years ago (which you can read about here). Giving up sugar, it occurred to me, could be as hard for Dylan as giving up drinking was for me. I know the situation is different in that a decision has been made for rather than by Dylan but I have his long term interests at heart and hopefully some understanding of his short term struggle. To help Dylan through the difficult early days I have been sugar-free too; how could I eat an ice cream while saying ‘No’ to Dylan?  Whatever the long term outcome of this trial, the shade of beige looks considerably less innocuous to me now.

*

Reference:
Caroline Knapp (1996) Drinking:  a love story. Dial Press

Images:
All photographs taken by Liz except for the milky bar image which is via wikipedia and the strawberry haribo image which is via needsweets.co.uk

Dylan’s Life In Song: music and autism

music 024One of the things that is striking about Dylan’s school reports is their lack of agreement about whether or not he likes music: Dylan loves music; assembly causes Dylan distress; Dylan responds well to music; Dylan is not comfortable in music sessions; Dylan enjoys listening to CDs; Dylan covers his ears. 

In this post I speculate on the reasons for Dylan’s apparently contradictory response to music. Inspired by my participation in a project run by Christy at runningonsober, I include songs selected by Dylan. Christy invited fellow bloggers to tell the story of their lives in ‘six songs and a bonus’ and last week it was my turn (you can listen to my seven songs here). I am including Dylan’s songs in this post not in order to tell his life story but to illustrate his relationship with music.

Auditory hypersensitivity

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

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

Music as discomfort: environmental noise

Brittany 13 175It is possible, I think, that this backdrop of environmental noise reduces the clarity of music in the same way that it interferes with Dylan’s processing of spoken language. Dylan may find music as uncomfortable as language in certain contexts (busy and open spaces, such as assembly halls, for example). Conversely, some environments may be particularly comfortable places for processing music. I’ve noticed, for example, that Dylan enjoys listening to music in the car. While some songs still cause him discomfort, the interior of a car seems to be good for listening. This also seems to be a useful space for Dylan to process language; he often extracts meaning from language more easily in the car. Perhaps the very features of private transport we complain about (sealed and isolated from others) are helpful to Dylan.

music 029The ultimate privacy in listening is via headphones. In a previous post I’ve written about the use of headphones to block or clear out background noise, for example via auditory integration therapy. Until he was a teenager the only music which Dylan would listen to (with one exception which I’ll return to) was nursery rhyme audio tapes. When I persuaded him to accept a nursery rhyme CD my daughter offered to put it on an i-pod shuffle for Dylan. This created challenge as well as possibility. Although we could now use music to lessen Dylan’s discomfort in the community, if we didn’t get the choice of music right it would have the opposite effect: delivering music which Dylan found painful directly into his ears was far worse than an uncomfortable environment.

music 014Don’t put anything on there your brother doesn’t like or know already, I instructed my daughter. I would discover her sneaky inclusions on the ipod from time to time as Dylan pulled the ear buds out and let me listen in (usually to a french pop song). One of the introductions my daughter made was crucial, however, in moving Dylan away from nursery rhymes; she had noticed his interest in one of my CDs and put this onto his shuffle. When Dylan first started to bring me the CD  (a collaboration between Elvis Costello and Anne Sofie Von Otter) I thought he was anticipating my behaviour rather than expressing a preference of his own. Later I would realise that it wasn’t that Dylan thought I wanted to listen to it but that he did. Dylan now has this album on CD, i-pod shuffle and i-pad. Is it possible, through this album, to identify the features of music which bring Dylan particular joy?

Music as joy: pitch and key

music 031Part of Dylan’s hypersensitive hearing involves a discriminating ear; I believe he has perfect pitch. Dylan cannot bear the sound of school and amateur choirs. He finds music played through poor equipment painful. He cannot endure piped music through public address systems. This may be partly due to the background noise of electronic equipment but I have seen Dylan react with equal discomfort to poorly pitched acoustic music and a capella singing. Many of Dylan’s musical choices may therefore be determined by the quality of sound; I’m sure the fact Von Otter is classically trained has a bearing on Dylan’s experience.

music 027It isn’t just about pitch though; Dylan may also have particular key preferences. When Dylan was very young  a musicologist, having observed Dylan’s engagement with music one evening declared: I think it’s Eb and Bb he likes – the language of the blues. Over the years I’ve seen this hunch borne out. Although at home Dylan only listened to nursery rhymes, at primary school he had a jazz blues tape which one of the teachers made for him and which Dylan listened to if he became anxious during the school day. Among Dylan’s favourite CDs today (though not making it into his final seven) are Bettye LaVette, Nina Simone, Etta James and Ella Fitzgerald.

Feeling the music

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

music 012Perhaps for this reason it’s taken a while for Dylan to tolerate my Bob Dylan collection. It is only tolerate though: I bought Dylan a copy of the Essential Bob Dylan last Christmas but it’s never been out of its case. Could this be about pitch and key? Is Dylan less enamoured of Bob than Nina because of the way they sound? I don’t think I have encouraged one rather than the other; I play them both equally and with equal joy. I could draw this distinction though; I don’t dance to Bob Dylan.

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

music 011One of the distinctive features of jazz and blues is syncopation. Syncopation refers to the interruption of expected rhythmic patterns; instead of the beat our ear expects (based on the rhythm already established within a piece) we encounter variety. Miles Hoffman explains this as “a disturbance or interruption of the regular flow of rhythm” through a “placement of rhythmic stresses or accents where they wouldn’t normally occur.” (Hoffman, 1997). Given that autistic people are believed to favour the expected over the unexpected, an enjoyment of syncopation may appear a surprising feature of Dylan’s engagement with the language of music.

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

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

Music and feelings

music 015While Dylan’s interest in jazz rhythms may be underpinned by structure and syntax, his song choices also suggest a role for semantics.  As well as the technical issues of acoustics, rhythm, pitch and key, Dylan’s engagement with music appears to be emotional. Just as you and I might associate a particular song with happy or sad times, so Dylan seems to have mapped some of his strongest memories on to music. Only recently have I realised that his refusal to listen to this U2 CD is probably because my ex-husband and I were listening to it at a crucial time in the breakdown of our marriage. Sometimes I cannot work out what the associated memory might be but I’m sure it is there; a Tears for Fears cover we are not able to listen to on a Patti Smith album for example.

Dylan’s songs

music 009When Dylan started taking an interest in music I decided to help him build his own music collection. He only ever buys duplicate copies of my CDs, however. To try and extend Dylan I have bought him different CDs by artists he already knows but if he doesn’t recognise the covers he won’t play them. For Dylan, visual information is an important part of his engagement with music.

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

music 008

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

music 020

Song # 1: Someone Like You by Adele

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

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

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

Song # 3 Shake it Out by Florence and the Machine

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

Song # 4: Fields of Gold by Sting

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

Song # 5 Nobody’s Baby Now by Nick Cave

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

Song #6 Night and Day by Billie Holiday

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

Song # 7 Hide and Seek by Imogen Heap

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

References:

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

Thanks to Christy at Running on Sober for sharing Dylan’s playlist on her blog: here’s a link.  I’m delighted that Dylan won a prize in a competition thanks to the lovely comments left by visitors to Christy’s site 🙂

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.

Five…

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

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).

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

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

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

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

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

 A Bit of Stretch

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

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

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

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

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

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

 Lounges, Walkways and Yellow Lines

Inverness 2014 012

Arriving at Inverness Airport

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

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

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

Inverness 2014 187

Checking Baggage at Inverness Airport (return trip)

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

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

Inverness 2014 189

Dylan’s suitcase being loaded at Inverness

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

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

 Cloudland

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After take off from Manchester

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

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

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

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

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

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

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Manchester Airport

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

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Inverness to Manchester

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

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

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

Reference:

 Julian Barnes, (2014) Levels of Life. Vintage

Sensory-Based Interventions In Autism: developing ‘material literacy’

This post is part of a series of reflections on the interventions I used with Dylan in the immediate aftermath of his autism diagnosis in 1996 at the age of two. The purpose of the reflections is to ask what difference early intervention made and what, with hindsight, I would do differently. In last week’s post I organised early intervention activity into the categories sensory, medical, dietary, behavioural and educational. This post focuses on sensory-based interventions.

The Seven Channels

Sensory integration is the process by which the brain organises and interprets information from our senses (hearing, touch, smell, taste and vision). In addition to the five senses there are two further processes which are part of sensory integration, proprioception which is an awareness of where our bodies are in space, and vestibular processing which is our sense of balance. The neurological difficulties which some autistic people have organising the information from these seven channels is described by the term Sensory Integration Dysfunction. The early interventions I used with Dylan were not particularly directed at smell, taste or vision but hearing and touch were a focus of some of the ‘treatments’.

Hearing: Clearing Out and Blocking Out

An intervention intended to address sensory dysfunction in relation to sound is Auditory Integration Training (AIT). This was popular in the 1990s following reports that it could promote speech in young children. I was skeptical but as it was non-invasive and appeared harmless I signed Dylan up. The treatment lasted half an hour every day for 10 days. During his time in the treatment room Dylan listened to audio tapes through headphones. The audio tapes, I was informed, were carefully compiled; over the period of the programme they would repair Dylan’s auditory channels. Dylan wasn’t yet talking, it was suggested, because of the disturbance in his auditory system which prevented him from distinguishing speech from the constant background noise he could hear. The music he listened to each day was designed to reduce this interfering noise and integrate his auditory world.

The sessions themselves were fairly pleasant; I chatted to the woman administering the AIT while Dylan crawled around the beanbags with headphones on. One day he crawled further than the cable would stretch from the amp to his headphones and they fell off. I was nearest to them so I reached to retrieve them and, curious, held them up to my ears to see what Dylan had been listening to. The woman wasn’t happy when I pointed out I had it in my vinyl collection and could play it to Dylan for free; the programme of music was carefully selected to combine frequency and pitch in a planned way, she explained.

Dylan didn’t start to talk as a result of Bob Marley and AIT nor did he show signs of any other particular benefit. However, another child in the group did start to vocalise during that ten day period and the mother believed (at the time) that this was a consequence of the AIT rather than coincidental maturation. While I don’t think AIT had any positive impact on Dylan it didn’t do him any harm. Music offers interesting possibilities for some autistic children who present with auditory disturbance (I explore the role of music in Dylan’s life here). AIT is an expensive programme, however, and does raise the issue of vulnerable parents investing in treatments for which there may be little scientific evidence.

We now know that auditory disturbance is common but in the 1990s sensory issues were only just being acknowledged. Over the years other responses to auditory disturbance have developed. While AIT aimed to ‘clear out’ auditory channels, some approaches are designed to ‘block out’ disturbing noise. When Dylan was older he encountered such methods; at one school he attended, for example, pupils were encouraged to use ear defenders (of the industrial variety) in order to reduce environmental noise. I was unhappy to discover that Dylan had been wearing these at school. This was not an approach I wanted to encourage; blocking out background noise also blocks out speech and language as well as a variety of auditory stimuli which I wanted Dylan to be exposed to in the context of an educational environment. I was also uncomfortable with the possibility that Dylan could become habituated to ear defenders and not able to function in the community without them.

London Lions 074As it happens, the trend for listening to iPods through ear buds has shifted to the use of Beats which are visually similar to industrial ear defenders. I have used both types of headphones with Dylan in order to support him in environments which he is likely to find stressful; this functional use of ear-wear I am perfectly comfortable with. I also take advantage of fashion to support Dylan’s sensory needs; for example I noticed these ear muffs in the men’s department recently so bought them for Dylan, comfortable with these in a way that I wasn’t happy with the B&Q ear defenders.

material literacy 012Dylan still presents with auditory discomfort. I’m not sure it is significantly improved but he does have better strategies for coping. Although I prefer the idea of interventions which could ‘clear out’ auditory disturbance, in practice I think ‘blocking out’ is the only plausible intervention currently. The question, then, is what parents and children consider to be acceptable methods of blocking sound and how to manage this.

Touch: Pressure and Control

early 006The current interest in weighted blankets is an example of a ‘treatment’ which is designed to provide the brain with space and touch data in order to improve proprioception. I’ve recently purchased some of these for Dylan though he doesn’t seem particularly interested in using them – possibly because even though I ordered the heaviest products on offer they are not really designed for an adult of Dylan’s size and weight. I can imagine them being comforting to young autistic children, however.

Weighted blankets adopt a similar sensory-based approach to that which underpinned some earlier interventions. When Dylan was young there was much interest in Temple Grandin’s ‘squeeze machine’. Grandin (autistic herself) observed anxiety levels in the livestock with which she worked and noticed they were significantly calmer when herding through an enclosed space. On the basis of this Grandin constructed a machine for her own use and reported its therapeutic effect on her at times of stress and sensory overload. Grandin’s machine could be understood as a precursor of the weighted blanket in that it was based on the principles of touch and proprioception.

I didn’t build Dylan a squeeze machine. However, over the years, there have a been a number of occasions when I’ve seen Dylan try to create his own squeeze machine. Once, on holiday in France, we thought that we had lost Dylan. I ran through the holiday cottage shouting his name and searching. Dylan was nowhere to be found, though we couldn’t imagine how he could have left the property. Imagine my shock when I checked one of the bedrooms again and caught sight of Dylan’s head peering out of the top of the wardrobe. We knew where to look for him later in the week at least (I was so amazed by this escapade I photographed Dylan in the act when he repeated it).

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Another method I trialled which involved touch was Holding Therapy. This was being used at the time in response to autistic meltdown in toddlers. Holding Therapy involved physically intervening with your child during a period of distress; you wrapped them in your arms and clasped them tightly to your body while they worked through their distress. You needed to be in a horizontal position on the floor for this, ideally without sharp or hard objects underneath or around you. The process could take anything from a few minutes to several hours (though I never lasted that long) and was physically and emotionally exhausting. The aim was to hold tight to your child until the point of ‘resolution’ when the rigidity and tension left their body and they made eye contact with you again.

This was a frightening process for both adult and child and on the couple of occasions I tried it with Dylan I found it very distressing. Holding Therapy made parent and child vulnerable to being physically hurt but more significant than this, for me, was the emotional damage it caused. It didn’t make me feel closer to Dylan nor did it help him to trust me; my view was that it had quite the opposite effect and I quickly abandoned my trial of Holding Therapy. Looking back on it now, with the benefit of current thinking about sensory integration, I can make sense of the therapy in relation to proprioception and touch. Where the therapy was ill-conceived, though, was that it was something that was done to the autistic child against their will; what the weighted products and Grandin’s squeeze machine do is give control to the autistic person.

Control is a particularly relevant concept, I think, in relation to early intervention in autism. We are not accustomed to giving children control over their lives. Involving children who need specialised and ongoing support (be it medical, environmental or educational) is something which we claim we do but, in practice, even older children are heavily guided by adults and professionals. Imagine, then, how difficult it must be for a ‘non-verbal’ autistic child with learning disabilities to assume any sort of control over their environment and treatment plan? For the very young autistic child, particularly one who is experiencing high levels of sensory dysfunction and who has limited communication strategies, the world must seem a very scary place. Such a child would typically not have much (if any) say in their ‘treatment’. As parents we tend to decide that we are going to ‘have a go’ at something, whether it be Auditory Integration Training, Holding Therapy or (as we shall see in a later post) behavioural conditioning. The young child may resist and protest (toddlers are good at this after all) but sometimes all the tears in the world cannot wrest control from the parents.

‘Material Literacy’

material literacy 005 When Dylan was first diagnosed I had some understanding of the role which clothing could play in addressing Dylan’s sensory needs. I bought him all-in-one undergarments as a toddler, realising that he enjoyed the sensation of being enclosed by fabric. I also realised how much Dylan enjoyed hooded garments in his early years and I would search for these for him (as I still do). These choices about clothing are simple adjustments to Dylan’s sensory experience, primarily in relation to the sensation of touch, which seem to make a significant difference to his comfort. Looking back I wonder whether quite a bit of Dylan’s distress as a toddler was linked to touch; it’s possible, for example, that disliking the physical sensation of wearing a nappy could explain some of his discomfort during those years.

material literacy 001I’ve recently been reading about babies who were given to the Foundling Hospital in London in the 18th century. The mothers left tokens of fabric at the hospital so that if, at some point in the future, they were in a position to return for their babies, they could be identified. These fabric tokens were used instead of letters because the women were illiterate. What the mothers demonstrated, however, was something which has been described as ‘material literacy’:

the mothers’ recourse to textiles as a vehicle for self-expression was not just a second-best substitute for writing. Theirs was a world where verbal literacy existed in conjunction with a kind of material literacy that is now much diminished; a world in which the use of certain objects to mark events, express allegiances and forge relationships was familiar and the meaning of those objects widely shared. (Styles, 2010, p. 70)

As I read this passage I thought of Dylan as well as of those women. And rather than think of ‘material literacy’ within a deficit framework I saw it as something to celebrate. Because of his heightened senses Dylan has a deep understanding of the material world; he knows how objects look and feel and how they smell and taste and sound. Dylan experiences the material world with an intensity which can sometimes cause discomfort but which is also a way of being literate and which therefore presents an opportunity.

Changing Discourses and Opportunities

In last week’s post I suggested that one of the factors which determines what interventions parents make with their autistic child is the ‘dominant discourse’ about autism at the time of treatment. There have been significant shifts in the discourse around sensory issues in autism since Dylan was diagnosed 18 years ago. We are now more aware and better at taking the lead from children when making adjustments to the sensory environment. Another factor I identified as influencing intervention was opportunity, and what we are perhaps less good at is providing opportunities for sensory integration.

material literacy 011Schools and care settings increasingly have sensory rooms which can be used therapeutically to support the development of skills such as ‘material literacy’. While this has enhanced the opportunities for sensory-based interventions with older autistic children it can be difficult for parents to access such resources, particularly during pre-school years. If I was starting out as a parent of a newly-diagnosed child I would certainly convert a room into a sensory space if I could; this is a long-term need and would represent a good investment. I would also focus on interventions such as music therapy and art therapy, both of which engage the senses.

Although it is not convention, at least in the UK, to offer occupational therapy to a child with autism, this is something I think could also be helpful. As well as enabling children to explore the physical world through their senses, occupational therapy can develop proprioception and vestibular processing. Activities which may be helpful for autistic children include rebound therapy (trampoline), climbing, yoga, movement and dance. Trust and collaborative games, balancing activities and adrenaline sports could also be used in the early years to develop a sense of self in relation to others. Anything involving spinning is great fun for the autistic child as well as a way of helping to address sensory integration dysfunction. If I had my time again I would also let Dylan spend as much time as possible in water (with or without dolphins).

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A number of other posts include reference to sensory issues; please search on ‘senses’ in the right hand menu.

Reference:

Styles, J. (2010) Threads of Feeling. The Foundling Museum, London (exhibition catalogue)

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

20140321_080046

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!