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.


References:

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

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

Ways Of Learning: examples from a home education programme

books etc 016In my last post I reflected on a home learning programme which I undertook with Dylan in the years immediately following his autism diagnosis. In that post I referred to a framework for home learning described by Aboucher and Desforges:

reading, library visits, playing with numbers and letters, playing with shapes, teaching nursery rhymes and singing.

In this post I provide examples of Dylan’s home-based learning within each of these categories. Although Aboucher and Desforges’ framework is not based on a specialist learning environment I think it is equally applicable for an autistic child with a learning disability. As the examples illustrate, however, flexibility is required when interpreting the categories.

a) Reading/library visits

Although Dylan doesn’t ‘read’ he has always loved books. Below are some ways in which Dylan engages with literacy-based activities and my reflections on their possible value.

  • WP_20150107_09_12_58_ProReading the same book for weeks on end. I used to try and move Dylan on to other texts but later realised that this repetition suits Dylan’s learning style and builds his confidence.
  • Reading multiple copies of the same book. I have speculated on possible reasons for this here.
  • Reading the same page in a particular book. Dylan keeps favourite books open at ‘special pages’. At home he keeps these close at meal time and bath time. I imagine that these pages are comforters for Dylan or that the characters on the page are real to him and are his friends, sharing Dylan’s key activities.
  • Turning the pages of a book rapidly, usually from back to front, sometimes while looking away or with eyes closed. I imagine Dylan might be counting or playing memory games.
  • Carrying books around without opening or looking at them. There are eight books which go everywhere with Dylan. Dylan doesn’t look at these outside the house; sometimes, when we are in a cafe, I might say ‘why don’t you have a look at one of your books Dylan?’ But he never wants to. Dylan has the books with him not as we might, in order to read at opportune moments, but as comforters perhaps, or because they are friends, or he enjoys their weight.
  • books etc 007Using books as objects, for example to sit on, lick, or wear on the head. Dylan’s sensory and physical relationship with books as artefacts is a valuable part of his developing literacy. Dylan accepts my standards of care for library books, I think, because he has his own copy of favourite books (which I accept will become wet, dirty and torn).
  • Reading homemade books. These can be quite simple: scrapbooks, for example, laminated pages or inserts in plastic sleeves of an A4 folder. The books can have a narrative arc (for example ‘using the toilet’) but more often the books I made for Dylan were simply pages of things which I thought would interest him.

For Dylan ‘reading’ is usually a private activity. This was hard for me to accept, initially, as my expectations and instinct about early literacy were that it should be shared. In time I learned to give Dylan the space he needed however. I developed the following techniques for offering support:

owl babies~ sitting silently next to Dylan with my index finger held out (I discovered that Dylan would take my finger and point to something in the book if he wanted me to name an object or clarify something);

~ sitting next to Dylan offering a simple commentary as he turned the pages (talking about the book rather than reading the narrative);

~ sitting at a distance ‘modelling’ reading by turning the pages of a book and using simple language (‘Percy sad’);

~ memorising some of Dylan’s favourite books and speaking these to Dylan at various times of day. In time this triggered him to fetch the book.

There are now a few books which Dylan will allow me to read with him. It is always important, however, that I let Dylan take the lead, e.g. selecting the text and setting the pace for me to read as he turns the pages.

b) Numbers and letters

books etc 005Numbers and letters are abstract symbols. Some children with an autistic spectrum condition are comfortable with this and demonstrate a facility for mathematics or for learning foreign languages. This is not the case for Dylan, however, for whom numbers and letters as symbols have never appeared meaningful.

At 20 Dylan will identify marks on a page as ‘why-ya’ (writing). He will also tell me that I am ‘why-ya’ if he sees me with a pen or pencil and piece of paper. Interestingly, however, if I am typing at a keyboard he will not identify this as ‘why-ya’ but rather ‘poo’ (computer) which he sees as a different activity entirely. I’m not sure if Dylan connects letters with communication (i.e. whether or not he understands the link between reading and writing). I am even less sure that Dylan associates number symbols (1,2,3 etc) with the thing(s) they represent. Dylan doesn’t have a word for ‘numbers’ and hasn’t ever told me that a symbol is a ‘number’ in the way that he has identified marks on a page as ‘why-ya’. I suspect that, for Dylan, numbers and letters amount to the same thing: abstract marks on a page.

I did a lot of fairly conventional number and letter work as part of Dylan’s home learning programme when he was young. Mostly this involved me trying to teach Dylan to sequence numbers and letters and to copy them. Dylan did not enjoy this work and never showed any real understanding of it. If I had my time again I wouldn’t bother. I continue to try and develop Dylan’s awareness of numbers and letters through alternative approaches, however. Activities which Dylan seems to enjoy and which have had some impact include:

  • books etc 006Counting things in pictures (the windows in Ulm cathedral is a favourite activity) through chant and point. Whenever Dylan pays attention to something I look for objects we can count, e.g. ‘let’s count the stars’.
  • Playing dominoes (this may be more about matching the shape of the dots than about number but I try to enforce the number link by counting dots when we play).
  • Focusing on meaningful sequences of numbers and letters rather than abstract sequences such as the alphabet. The  sequences of letters which Dylan recognises currently are D-y-l-a-n and (possibly) m-u-m. It has taken many years of exposure to the letters in Dylan’s name for him to recognise them. Even now I don’t think that Dylan ‘reads’ his name; he likes pointing to the letters on his door and for me to chant them, but he is as likely to indicate them in reverse order (but get cross if I sound them out backwards).
  • Gradually replacing familiar pictures with letter sequences. I tried doing this as part of Dylan’s home learning programme by blanking out some of the pictures in his ‘red book’ and in lotto games. On reflection I tried this too early. I should have allowed more time for Dylan to feel confident communicating with photographs, pictures and symbols before moving him onto letters. Attempting letters too early created a sense of failure in Dylan and frustration in me (or perhaps vice-versa). My sense is that Dylan is only now moving into the symbolic stage of communication; I have had some success this year with makaton signs and symbols and have therefore recently introduced the sequence m-u-m.
  • books etc 002Introducing numbers and letters in a naturalistic and comfortable setting. I have introduced m-u-m on Dylan’s visual timetable board because it’s an object which is important to him, that he is comfortable with, and which he interacts with on a daily basis. For other children and adults this might be DVDs, i-pads, the fridge door etc.
  • While technology supports some children to develop an awareness of numbers and letters, Dylan doesn’t seem to recognise word processed text or screen-based letters and numbers. Dylan’s learning style is kinaesthetic; he needs to hold a physical letter or number in his hand and engage with it as an object. For learners like Dylan, play letters and numbers are important for years beyond what might be considered ‘age-appropriate’.

c) Shapes

wikipediaI did ‘shape work’ with Dylan as part of his home learning programme but am fairly confident that he still doesn’t recognise the words ‘square’, ‘circle’ or ‘triangle’. And who cares? Is it going to make his life any less rich? Does it matter if he doesn’t know the word to describe a shape? As with letters and numbers, Dylan needs a physical object in his hand to recognise the shape of it. I’m sure that he has an intimate understanding of a triangle; if I put one in his hand he would explore it with all his senses (especially if it was a piece of Toblerone). But he wouldn’t recognise the name for it. And he wouldn’t push it into a ‘shape sorter’ with any enthusiasm or success. In fact I used to think Dylan tried to push shapes into the wrong holes deliberately, for a laugh.

books etc 009Autistic children have good visual-spatial awareness and it is generally assumed that they therefore enjoy doing things based on these skills such as jigsaws. Dylan, however, doesn’t show any enthusiasm or particular ability for jigsaws. I have never been sure whether this is because he finds them difficult or because he finds them boring; although mostly Dylan doesn’t complete jigsaws, sometimes he surprises me by showing that he can. Actually I’m with Dylan on this one; I’ve always found jigsaws fairly pointless. Nonetheless I scheduled them in Dylan’s home learning programme because I thought I should. On reflection it was a waste of time; there were plenty of other things we could have been doing. Some of the activities I did (and still do) with Dylan which develop his visual-spatial skills and which he enjoys include:

  • Matching games. It is easy to make lotto games of objects which your child is particularly interested in or of new vocabulary which you want to teach. While this isn’t about ‘shape’ as such, it is about pattern recognition which involves the same cognitive processes.
  • Flash cards. A deck of cards is tactile and comforting; you can shuffle, sort, browse, deal, distribute, drop, pick-up, check, lose, duplicate and throw away. So many wonderful possibilities. Dylan liked cards. I probably didn’t exploit this interest as much as I could have.
  • Found shapes. As a writer I love to stumble on poems which exist without having been written: the found poems we encounter if we keep our hearts and minds open. And shapes are even easier to find than poems; food is a great place to look (I’ve already mentioned Toblerone) as is the great outdoors. I am currently working on pointing shapes out to Dylan in the hope he might make the links between them and recognise the abstract concept of ‘triangle’ as something which applies equally to a piece of chocolate and a road sign.

d) nursery rhymes and singing

education reflections 055Some of Dylan’s most effective exposure to language has been through musical resources; I suspect this is because nursery rhymes and songs use devices such as chorus and repetition which create the pattern and structure which Dylan responds to. Although Dylan has an ambiguous relationship with singing due to his auditory sensitivity (I have written about this here and here) music has been one of the most important things in his life and seems increasingly significant as he gets older.

Nursery rhymes and singing are used in early years education not just because of their intrinsic value but as a vehicle for learning. They can support the development of pre-lingual skills such as turn-taking and imitation as well as developing social awareness (for example emotional understanding) and cognitive knowledge (for example in relation to literacy and numeracy). While I realise this raises issues around age-appropriate activities (which I have reflected on here) I continue to engage Dylan through nursery rhymes and singing on a daily basis. Some approaches which I have found particularly useful include:

  • music 029Making compilations of nursery rhymes and songs for Dylan on key themes to support specific learning (e.g. ‘parts of the body’ or ‘counting’)
  • Putting nursery rhymes on Dylan’s i-pod so that he can listen to them privately and when out and about in the community (I have written more about this here)
  • Encouraging Dylan to listen to nursery rhymes as part of a bed time routine (I think Dylan has learned a lot from his years of routine listening)
  • ‘Embodying’ nursery rhymes through actions: some of Dylan’s favourite nursery rhymes, and the ones he seems to learn most from, are those with accompanying actions.
  • Exaggerating actions to nursery rhymes in order to emphasise communicative purpose.
  • Making changes to the words of familiar nursery rhymes so that Dylan accesses meaning as well as sound. My daughter, for example, changed ‘one potato, two potato’ into ‘one banana, two banana’ one day, changing the shape of her hand from a fist to a flat curve. Dylan found this hilarious and still enjoys changing potato to banana.
  • Exaggerating singing of nursery rhymes in order to emphasise features of language such as stress, intonation, tone and pitch.

Final reflection: the importance of language

independence 016What makes the education system fundamentally inaccessible for many children is the role of language in the delivery of the curriculum. A key challenge for parents and educators is therefore how to make learning accessible for children who do not speak or use an alternative communication system. Dylan is currently developing some echolalic speech but for the majority of his life, and throughout his schooling, has been classed as ‘non-verbal’. It is perhaps not surprising  that so many of the suggestions in this post focus on language development; it is in its potential for adaptations to language, I suspect, that a home learning programme may be of particular value.

Reference:
Desforges P. and Aboucher, A. (2003) The Impact of Parental Involvement, Parental Support and Family Education on Pupil Achievement and Adjustment: A Literature Review. Queen’s Printer: Exeter

Images:

The images of Owl Babies and the Toblerones  are from Wikipedia. The opening photograph of Dylan reading Postman Pat was taken during a holiday in France in the late 90s, at the time of Dylan’s home education programme. The closing photograph of Dylan at a climbing centre (holding a copy of Pinocchio) was taken just before Christmas 2014.

Education-Based Intervention In Autism: Dylan’s home learning programme

education reflections 005In a previous post I reflected on the pressure which parents can feel under to take action in the aftermath of an autism diagnosis; early intervention, we are told, can play a critical role in future outcomes. Following Dylan’s diagnosis 18 years ago I trialled a long list of therapies. These interventions, I suggested in my earlier post, could be categorised as sensory; dietary and medical; behavioural; and educational. This is the last in a series of posts reviewing these approaches in turn.

Orchestrating interventions

No single approach is sufficient in itself and I doubt there are any parents or professionals who focus exclusively on one of the four categories of intervention I identify above. The question, for most parents, is the balance between the categories and the way as education reflections 008caregivers and educators we orchestrate them. In my introductory post to this series I identified some of the factors which impact on our choice of therapy: the child; parental values; the available resources; and the ‘dominant discourse’ abut autism at the time. As well as influencing our adoption of individual therapies, these factors affect the way we combine them.

One hypothetical parent of a pre-school child, for example, may opt for a gluten and casein-free diet with sensory-based interventions such as weighted blankets, massage, music therapy and gross motor activities. Such a parent may adopt a non-directive approach, preferring not to use behaviourist interventions or to offer their child formal education. Another hypothetical parent, meanwhile, may focus on the re-shaping of behaviour through a programme of rewards and reinforcers based on behaviourist education reflections 009philosophy. Such an intervention would include educational input as behaviourist approaches are used to facilitate cognitive as well as social learning; the framework for the educational content, however, would be social.

The two hypothetical parents in the above examples are a bit stereotypical. While it is often the case that a family opting for a behaviourist programme will place less emphasis on sensory approaches it is possible to mix and match eclectically from the four categories. To a large extent this was the approach I took with Dylan. However, as my earlier posts in this series indicate, the different interventions map onto distinct sets of ideas so choosing a particular intervention also involves adopting a particular philosophy.

Why education?

education reflections 012The four categories of intervention activity are underpinned by philosophical ideas because they align with academic disciplines and thus with theory as well as practice. Sensory interventions, for example, draw on ideas from Occupational Therapy while behaviourism is based on theory from Psychology and dietary and medical interventions align with disciplinary fields such as biochemistry and neuroscience.

As an academic discipline as well as a field of practice, education offers activities underpinned by theories about learning and child development. Given my work as an educator, this was a comfortable place for me; the language and philosophy felt familiar even in the transformed landscape of an autism diagnosis. After half-hearted trials with other interventions, and an abandoned attempt at a behaviourist programme, education was therefore what I chose.

Parent and educator

Initially I proceeded by instinct, aware that my assumptions about teaching and learning could be a burden rather than an asset when working with Dylan: in order to become a better educator I had to do what I asked of my students and unlearn some of my beliefs about education. Although I tried to bracket my professional experience I did draw on some practices from the workplace such as systematic planning and recording. I probably didn’t realise at the time how useful this was but looking back I can see that the framework it provided was helpful for me as well as for Dylan.

It isn’t easy for a parent to take on the role of educator. The most significant challenge I faced was without doubt my ability to cope emotionally. The inevitable frustrations and setbacks can be hard when you are emotionally involved with the child. You cannot walk away from the situation at the end of a difficult day. It can be harder to evaluate learning objectively; sometimes I wore rose-coloured spectacles and sometimes dark lenses. Furthermore, the potential for confusion of role between mother and son, teacher and child, presents particular challenges in the context of autism.

It is perhaps not surprising that many parents prefer to employ people to work with their children – indeed, this is recommended by behaviourist programmes. This wasn’t an option for me however; finances didn’t stretch to employing assistants for Dylan. Besides, I argued to myself, I had the necessary skills as well as instinct.

Intervention by instinct

education reflections 053It was by instinct, however, that I developed what I called ‘video teaching’. I’m not sure whether it was original (probably not) but I came up with it one night, alone and restlessly awake, praying for a good idea by morning. Dylan would have been around four years old at this point and his love of video was already clear. The only time Dylan was still was watching Pingu, Postman Pat or Thomas the Tank Engine. He would sit on a cushion in front of the television, periodically flapping his hands or making an excited ‘shushing’ noise with a little tremble of his head. However often Dylan watched, he was always engaged; this, I thought to myself, was the focus I needed.

education reflections 057It was the late 1990s, before the introduction of digital technology. Fortunately I had access to recording equipment at work so one holiday I borrowed a large, heavy camera. With the help of my six year old step-daughter, husband and mum I made ‘home teaching videos’ for Dylan. These involved flash cards and objects in real life contexts. In one scene, for example, my mum held a fork and flashcard in her hand while saying: Fork Dylan. It’s a fork. F-O-R-K. Fork. Then she mimed eating with the fork. Having the flashcard and the object, and hearing the word pronounced repeatedly, was an attempt to engage Dylan as a visual as well as an aural learner. It also allowed for the possibility that although Dylan didn’t speak he might be able to read (this hasn’t turned out to be the case).

Dylan loved the videos; he would happily watch them through over and over, seeming to enjoy seeing familiar people and objects on the screen. I’m not sure how much Dylan learned from the videos – he almost certainly didn’t engage with the flashcards and at 20 still struggles to recognise some of the vocabulary – but I think they were worthwhile nonetheless. Video teaching taught me that a home learning programme is a good way of involving the wider family (my step-daughter had great fun making the videos). It also demonstrated to me that Dylan could focus if I developed materials which were engaging and in a format with which he was comfortable.

The home learning environment

education reflections 062As well as instinct I drew on approaches to working with autistic children which were current at the time. I used ‘start-finish’ baskets as advocated by TEACCH programmes, for example. Although I had rejected behaviourism for Dylan I borrowed the approach to pace and rhythm adopted by the PEACH programme; working in short bursts seemed appropriate for Dylan and chunking up the sessions provided me with a robust structure when planning. I also borrowed some instructional techniques and based Dylan’s work space on a mash-up of TEACCH and PEACH; eclectic, but so what if it worked?

education reflections 054At the time, my focus was very much on finding alternative ways of working with Dylan. I didn’t believe the child development manuals had anything to offer us and the school curriculum seemed irrelevant. As far as I was concerned, what I had to do with Dylan was utterly different to the approach I took with his neurotypical sister. When I worked with Dylan I felt as if I was somewhere otherly and without a map; I was, I thought, a cartographer.

Marking a student’s essay recently, however, I read something which gave me pause for thought. Aboucher and Desforges, my student informed me, describe a Home Learning Environment (HLE) as one that is made up of:

reading, library visits, playing with numbers and letters, playing with shapes, teaching nursery rhymes and singing.

education reflections 028I read the list of activities (which relate to any home learning rather than specialist provision) several times. What struck me is that it was a perfect description of my current life with Dylan; in the course of a week, we do all of these things. There is a sense in which time stands still, or moves slowly, when living with autism; at 20, Dylan is rehearsing many of the same skills he was at five. I fetched my crate of home education resources from the cellar and looked through them; the early intervention activities I did with Dylan fitted the Aboucher and Desforges’ framework well.

education reflections 049I probably didn’t do anything different with Dylan 16 years ago, in terms of focus, than an early years educator would do with any child. What was different, however, was the way in which Dylan engaged with the books, numbers, letters, shapes, nursery rhymes and singing. In a linked post I provide illustrations which, as well as demonstrating the role of a HLE in supporting an autistic child, offer practical ideas for parents within the categories identified by Aboucher and Desforges.

Hindsight standing still

education reflections 050If the activities I do with Dylan haven’t changed in the last 16 years happily I have; I can still enjoy that wonderful thing, hindsight, while standing still. And if I had my time again I would do some things differently; I would, for example, focus more on interventions based on OT (an earlier post describes activities I think particularly helpful). While I did fine motor work with Dylan (cutting, threading, shape sorting) I probably didn’t place enough emphasis on physical activity. There was only limited understanding, at the time, of sensory profiling; of the various developments in the last couple of decades I would say that our knowledge of sensory issues has made the most significant difference to the support we can offer our children.

education reflections 055In the introduction to this post I restated the four factors I believe drive decisions about intervention: the child, the parent, the available resources and the dominant discourse. A better understanding of Dylan’s needs when he was diagnosed might have led me to adopt a sensory-based approach to early intervention. While my choice of intervention may not have been sufficiently focused on the child, however, neither was it driven by prevailing discourses at the time; I rejected the use of behaviourist and dietary/medical interventions as a potential ‘cure’ for autism. While I’m not uncomfortable with my decision to focus on educational intervention following diagnosis, Dylan didn’t benefit from my HLE in the way I had hoped.

On reflection, the decision to focus on educational interventions was based on my needs not Dylan’s. While working intensively with Dylan developed my practice, Dylan didn’t acquire the skills I had intended. Early intervention, it turned out, would bring about changes in me, the parent, rather than in the child. In the years since, I have wondered if the transformation of parental attitudes and beliefs is the main value of such initiatives. This surely is invaluable? A child’s parents are his or her greatest resource and time invested in the relationship is, perhaps, the mother of all interventions.

Reference:

Desforges P. and Aboucher, A. (2003) The Impact of Parental Involvement, Parental Support and Family Education on Pupil Achievement and Adjustment: A Literature Review. Queen’s Printer: Exeter

Images:

The images in the post are examples of my early planning and recording, Dylan’s ‘work’ from the time and pages from his ‘red book’, a resource I developed to support the home education programme.

Thank you for supporting our blog in 2014

Best wishes for 2015

Liz and Dylan

🙂

What Difference Did It Make? Reflections on autism and early intervention

I quite often hear American friends on social media referring to ‘weighted blankets’ as a great resource to use with their children or, in the case of autistic adults, themselves. Intrigued, I searched for a UK supplier recently and ordered a lap and shoulder pad to trial with Dylan (well actually I bought the shoulder pad for myself).

Another thing I did recently was make Dylan a countdown chart to his birthday. I’d mentioned his birthday to him one morning, looking ahead a couple of weeks, and when we went to the supermarket later that day Dylan tried to buy a packet of candles and a cake. I struggled to get Dylan to put these back and later, regretting the incident and my part in it, I drew Dylan a simple chart showing how many ‘sleeps’ he had to wait. This is the sort of visual aid that has been used with Dylan in one form or another all his life.

These two objects – the innovative weighted products and the old faithful countdown chart – led me to reflect on the various interventions I have used with Dylan in the 18 years since he was diagnosed as autistic. I recalled that within the first three years of diagnosis I had trialled (in roughly chronological order) the following interventions and approaches:

• non-directive play therapy
• LOVAAS behavioural therapy
• holding therapy
• gluten and casein-free diet
• Auditory Integration Training
• video teaching
• melatonin
• ritalin
• homeopathy
• mega-vitamin therapy
• TEACCH
• makaton
• PECS

During this time I also visited the Options Institute in Massachusetts, attended UK conferences, events and training courses and between 1997 and 1999 (when Dylan was aged three to five) gave up paid employment in order to work intensively with him on a home education programme. The only thing I didn’t get around to doing during this time was swimming with dolphins.

I’m struck, now, by the frantic and eclectic nature of this activity. Just reading the list exhausts me. How did I find the time for all that, especially with a new baby? Did I care that the approaches I was trialling represented different philosophical positions? Was it a case of being prepared to try anything? Did I believe in everything or nothing? What did I imagine would be the impact on Dylan of all this activity? As I pinned up the countdown chart the other week it occurred to me that 18 years later I am still working on some of the same skills with Dylan. What difference, I ask in this post, did those early interventions make?

‘The Early Bird Catches the Worm’

image @telegraph.co.uk

image @telegraph.co.uk

There is no doubt that the years after early diagnosis are hard; as well as adjusting to the emotional impact I remember struggling to manage the practical implications of caring for Dylan. Coping with the difficulties of toileting, sleeping and feeding in particular took their toll on my family. Dylan is quite severely affected by his disability and this has meant that almost every developmental step has been demanding, difficult and exhausting to take. There was a time when it wasn’t possible to involve Dylan in family life or everyday activities outside the home. Events such as shopping trips, visiting or errands were impossible. Changes in lifestyle in order to accommodate Dylan and his needs (and for him to accommodate us) followed slowly. Gradually we learned to juggle family life and commitments in order to manage those difficult early years.

If someone had told me then that Dylan would make progress – slow and idiosyncratic but progress nonetheless – that would have helped enormously. I think in those early days I imagined that Dylan would get bigger but would otherwise stay the same. It seemed that the only thing that might make a difference to this (short of a miracle) was me. Early intervention, I was told, was crucial. The advice from organisations such as the National Autistic Society (NAS) was that the earlier you started work with your child the better; ‘Early Bird’, an NAS programme at the time, promoted the idea that a swift response to diagnosis could have a positive influence on later outcomes. This advice is still promoted with parents. Only this week I read that researchers at the University of California have identified brain abnormalities which they suggest reinforce the importance of early intervention; the patchy nature of the abnormalities, the scientists claim, may explain why some autistic toddlers show signs of improvement if treated early enough (Briggs, 2014).

early 001If someone tells you that the main thing that is going to make a difference to the progress of your autistic child is you, it has a profound impact on how you feel about your role as parent. While all parents like to believe they make a difference to their child’s development the stakes seem particularly high following an autism diagnosis. As a new parent (new not just to autism but to parenting) I tended to follow guidelines and advice. I had read Penelope Leach’s Baby & Child while waiting for Dylan to be born and after his birth I had read along chapter by chapter as he got older. Now I relegated Leach to the back of the cupboard and focussed my efforts on ‘early intervention’.

imagesJP8ENTPGThe problem, though, was that no one could say what form this early intervention should take. How should we go about catching this worm? I remember the consultant who confirmed Dylan’s autism diagnosis telling me that the only thing he had ever known make a difference was love: go home and go on loving your child was his advice to me. There was, however, a clamour of parents, professionals and organisations on the newly-emerging Internet claiming treatments and miracle cures for autism. Parents of newly-diagnosed children are particularly vulnerable to these ‘rescue narratives’ because they feel it is their responsibility to do anything they can to improve the prognosis for their children. In particular, the possibility that you might be able to restore the world to the way it was before diagnosis can be irresistible. So even if I wasn’t sure what would make a difference, the dizzying activity made me feel better: at least I was doing something, keeping busy, trying my best.

Intervention in Hindsight

Although I still look for ideas to try with Dylan it is not with the desperation or dreams which characterised my search for treatments in the aftermath of his diagnosis. Then, because I didn’t know what might help Dylan or what I preferred, I tried everything I could. Now I have a better sense of what is likely to help Dylan and what we’re both comfortable with. My expectations are realistic: I know what the interventions are likely to help with and what they can’t achieve. Also, importantly, I’m no longer looking for a cure.

Over the next few posts I will offer reflections on my experience of early intervention during the pre-school years. I’m focusing specifically on this period as it is a time when parents are vulnerable to the idea that they should be doing something to help their child but are also often most alone. In reviewing early intervention I will use the following categories which I’ve found useful in thinking about my own practice:

  • Sensory Adjustments
  • Medical Trials
  • Dietary Interventions
  • Behaviour Modifications
  • Educational Programmes

Next week I will reflect on the sensory interventions I trialled with Dylan and subsequent posts will consider the dietary/medical,  behavioural and educational programmes I adopted in the years following diagnosis.

As I reflect on interventions and evaluate their contribution to Dylan’s development I will ask what choices I would make now, with hindsight. Decisions about interventions (including doing nothing) are not straightforward and are influenced by a range of factors. The most obvious influence on the choice of intervention is the child; the spectrum nature of autism means that what is helpful for one child may not be appropriate for another. As well as being determined by the child, however, the choice of intervention is affected by the caregivers’ feelings and beliefs. Parents embark on their own journey following an autism diagnosis and will be ready to embrace different options at different times. Society’s perspective on autism (the ‘dominant discourse’ ) also affects the options for intervention following a diagnosis. Attitudes to autism in the last 10-20 years have been transformed by research, and the testimony of autistic people, and this has had a significant impact on the interventions which we now consider acceptable. Finally, practical considerations (such as resources and family context) and opportunity (e.g. the availability of therapies) will play a part.

These four factors (child, parent, discourse and opportunity) combine to determine the choices which parents make. Because my reflections are based on Dylan they will be specific to a child presenting with a learning disability as well as autism. In reviewing events 18 years after my son was diagnosed I am intentionally reflecting on my feelings about intervention at different points in my journey as a parent. Society’s understanding of autism has changed since Dylan was diagnosed and some of the approaches which were current in the 90s (and which I used) have since been discredited. The options available to parents today are also different to those which I encountered 18 years ago; in particular, developments in technology have transformed the range of possible responses to children on the spectrum (e.g. through i-pads and Facilitated Communication).

Even with these changes in discourse and opportunity the categories of intervention I identify above seem to me to have remained constant. By reviewing experience in relation to these categories I hope to focus on the underlying philosophy of intervention rather than the nuts and bolts of individual therapies. Writing the posts may change my thinking but I imagine I’ll argue for a primarily sensory-based approach in the early years with non-directive therapeutic support. Throwing everything at your child, as I did when Dylan was first diagnosed, is exhausting and helps no one. I’ll suggest that some interventions may be useful but are better left until later. Part of the trick, I think, is assessing a child’s readiness for a particular intervention. Leach is not entirely useless; some of the regular stages of child development may still be relevant and recognising these, and being ready to respond with an appropriate intervention, can be important.

The Worm of Self

black3

image @ itv.com

Something else which I will reflect on in upcoming posts is unexpected outcomes. I don’t think the various activities and trials I embarked on after Dylan’s diagnosis made any real difference to him during that time, but those years helped me to understand and become close to him in a way I might not have otherwise. Looking back, the early years were crucial to my development; I was the one who had to change so that I could understand Dylan’s world and re-think my parenting. In this way, the significance of early intervention may lie in the difference it makes to parents rather than to children: the ‘worm’ which parents are urged to be quick to catch may perhaps be found within themselves.

References:

Briggs, H. (2014) Autism ‘Begins Long Before Birth’ BBC News, 27/03/2014
http://www.bbc.co.uk/news/health-26750786

Leach, P. (1989) Baby & Child: From Birth to Five Penguin

Related Posts:

When Chronological Age Is Not Appropriate

Dylan's 20th Birthday 001Dylan turned 20 last week. This year his gifts had a sports theme but there were also Disney DVDs and children’s books. Just days before I went birthday shopping I realised that Peter Pan (who has been Dylan’s passion for years) had been replaced in his affections by Ariel. I become so accustomed to Dylan’s heroes  that I don’t always notice when they change.  Certainly that was the case when Postman Pat gave way to Snow White (who in turn gave way to Peter Pan). However, picking a Little Mermaid book up from Dylan’s bed for the umpteenth time last week, the light dawned.

Often when I am shopping for Dylan I need to check details with shop assistants.  Do these swim goggles have easily-detachable parts?  Do you stock Disney versions of the Little Mermaid?  Do you have any other Ariel products? When my questioning seems odd I sometimes explain: it’s for my autistic son.  In a previous post I’ve reflected on autism and socialisation to gender roles, arguing that gender is not a meaningful concept for Dylan and doesn’t inform his choice of activities. Ariel may not be as boyish as Peter Pan but that doesn’t bother me;  I’ve bought plenty of princesses for Dylan over the years.  There is a level of awareness of autism now which means that shop assistants have some understanding of this and rarely flinch. However, what I notice does cause consternation is the explanation: it’s for my adult son.

Who Cares?

Some of Dylan’s birthday presents are ones which many men might be glad of.  He enjoys being active so sports gifts are not much different than for other 20 year olds. Dylan also has an interest in clothes so it’s possible to buy him fashions from the High Street; Dylan has an array of hats, bags and the latest ear buds, Beats and eye wear just like other young people.

DSCF1268

Coastal Path, North Yorkshire, 2011

However, if that sack hat were twitched slightly it might expose the name tape stitched into it. And while, in the photo below, Dylan looks like any young man at Camden Lock Market enjoying the Sunday atmosphere, he’s more than likely listening to The Wheels on the Bus or Old MacDonald. Dylan is developing some age-appropriate music preferences but he still chooses nursery rhymes when in need of reassurance and  I let him listen to these in potentially stressful places.  In this way I encourage Dylan to ‘go undercover’ ; only Dylan and I know of the adaptations made to his clothes and music in order to keep him safe and comfortable. Adjustments such as these are made so that Dylan can blend in with his peer group and not draw attention to himself.

This suggests that the concept of age-appropriate behaviour is something which matters to a group rather than to the individual. There are unwritten codes about what is deemed appropriate behaviour and any person who seems not to be conforming to these codes runs the risk of being reprimanded by the group (through disapproving looks or verbal challenge). It is often peer pressure, then, that directs us towards appropriate ‘norms’ of behaviour based on chronological age.

Act Your Age

London Lions 077

Camden Lock Market, London, 2013

For autistic children and adults, particularly where a learning disability is involved, behaviour does not map well onto chronological age. This can be perceived as problematic in a society where ‘grow up’, ‘act your age’ and ‘don’t be childish’ are frequent admonitions.  In Western society we do not tolerate those who habitually act as if they were younger than their chronological age (childish), nor do we appreciate adults ‘getting in touch’ with their child in response to a specific incident or experience (childlike). Not only does society not value these qualities, we are actively encouraged to suppress them in order to engage effectively with the demands of education, the work place and social life.

Here I am referring to emotional and social, rather than cognitive, maturity; even if young people struggle in the education system when compared to their peer group, we expect them to be adult in their approach to managing their subsequent employment and family life. There is not much place for the child in our society. Imagine, then, the challenge which a grown man with childlike qualities and behaviours poses to those around him. And for Dylan, the challenge of age-appropriate behaviour is not just emotional and social but cognitive too.

The Age-Related Profile

I don’t like the terms ‘high’ and ‘low’ functioning and I don’t use these labels myself.  I’m not a fan of chronological age as a description of intellectual functioning, either, though we use this for educational purposes. On entry to school, and for many years afterwards, teachers reported that they were not able to make reliable assessments of Dylan. More recently, however, they were able to make some measures of his cognitive functioning, reporting it as 2.5 years when Dylan was 14, rising to 4.5 years on leaving school last summer at age 19.

When we use the expressions high and low functioning what we are measuring with is the yardstick of chronological age; a child who is ‘low functioning’ is performing significantly below the level expected for their chronological age. By refusing to use these labels to describe Dylan I am indicating that I find chronological age an unsatisfactory measure of my son’s ability. While I may not like using chronological age-related measures for Dylan however,  I recognise him in the description of a child of 4.5 years. Many of the recent developments I’ve observed in Dylan are not unlike those I might expect to see in a child who is getting ready to start school. Dylan is now taking an interest in turn taking games, especially clapping rhymes. His imitation skills have improved and he will fairly reliably copy actions. Some of these skills are precursors of linguistic development and Dylan is, indeed, extending his vocabulary.

Children’s drawings are good indicators of cognitive and social development with clear stages identified in the representation of the human form.  When asked to draw a person a very young child will offer, for their first discernible human being, a roundy body with key facial features.  Later, the child will add detail but some will not be realistic; the legs which can be seen through clothes for example or shoes at right angles. At this stage, triangular bodies are typical and represent the child’s recognition that people wear clothes rather than walking around naked (the triangle-shape is the dress on a female person).  Later, and in line with the child’s cognitive and social development, the human form may be represented in profile. It is only after this (and at the most complex stage of representation) that a child may produce an aerial view of an object.

Dylan's 20th Birthday 010

‘A Man’ by Dylan, 14/03/14

For Dylan’s birthday last week we went out for a meal. In a lull during service, trying to keep Dylan occupied, I gave him a pen and serviette and asked him to draw a man.  This is not something I would normally do with Dylan who has shown no interest, so far, in drawing nor any inclination to hold a pen. However, experience has taught me that all of  a sudden things can change and I try to let myself never say Never.  Dylan didn’t respond to my request so I drew a circle on the serviette. To my surprise he then added to the circle, in response to my verbal request, eyes, ears, nose, mouth, hair and neck. Voila!  On his 20th birthday, Dylan’s first drawing of a person! I was so proud I photographed the fragile corner of serviette.

These behaviours –  imitation, turn-taking, clapping games, vocalisation and drawing – are developmental milestones which are described in the child development literature and which could be indicators that Dylan is getting ready to learn. Dylan is still developing and is following many of the standard developmental stages; what is different is that these do not follow the usual trajectory of chronological age. Dylan’s current cognitive functioning appears to be similar to that of a neurotypical child starting school. It is in this sense that I have found the description of Dylan as functioning at 4.5 years helpful; it has enabled me to reflect on Dylan’s progress and  think about how I can support him to the next stage.

Spiky Profiles

20th birthday celebration in the pub

20th birthday celebration in the pub

There are, however, ways in which Dylan’s profile is more complex. Although it can be helpful to think of him as cognitively 4.5 years the fact that Dylan is physically 20 years old influences his developmental path. Dylan’s core emerging vocabulary is not the same as a young child’s, for example, as it includes words which reflect his different preoccupations. While many of his interests are similar to a five year old (especially in relation to books and films) Dylan also makes some age-appropriate film choices,  such as Harry Potter and Lord of the Rings, and increasingly age-appropriate music choices. Dylan has what I would call a ‘spiky profile’.

The term ‘spiky profile’ refers to individuals whose achievement varies across a range of different categories.  While the spikes are broad and extreme for Dylan due to the gap between his chronological and cognitive age, many of us demonstrate some sort of spikiness. I remember when I was an undergraduate one of my lecturers told me about research she was doing on patterns of achievement at A Level and on graduation from an undergraduate programme. While it was satisfying, she told me, to see consistency in individual profiles (the student who achieved three grade As at A Level and then a First Class Honours degree) this was a rare occurrence. More typically there was no consistency within individual profiles. Her description of these ‘spiky profiles’ influenced my thinking about achievement and has been something I have observed in my own students as well as in my observations of Dylan.

 Educational Adjustments

Chronological age is the tool which most societies use to plan for and deliver mass education. A few countries try to take account of the gap between chronological age and achievement by requiring students to repeat chronological age stages which they fail. More commonly, however, children move through the education system in year groups.

When I was training to teach, a mentor told me that the way in which we set ‘norms’ for pupil achievement around chronological age were not only unhelpful but misguided.  In the context of a secondary school which used ‘mixed ability’ grouping I was told that if I pitched my teaching down the middle of a group I could be sure to miss everyone in the class. Remember, my mentor told me, that there is no such thing as a 50th centile child.  Centiles and norms are statistical calculations, he pointed out, to describe a scatter of points on a graph. The children in my class were scattered all around the 50th centile line bisecting the graph, but none of them actually fell onto the line itself. If I wanted I could go on planning lessons which catered for the ‘norm’, but I needed to be aware that if I did so my lessons would meet no one’s needs. His plea was for me to differentiate my teaching; I needed to individualise my resources, especially for the outlying pupils on the graph. Establishing expectations for children and adults by chronological age and measuring progress against a mean, or norm, hurts everyone, not just those with special needs. However, it is the outlying children who are hurt the most by the tyranny of chronological age.

Dylan's 20th Birthday 011Dylan’s particular profile of need means that he is just starting to be ready for school-based learning. Ideally, Dylan would start formal education now, with skilled practitioners who could adapt the primary school curriculum for adult learners.  All of the skills Dylan is demonstrating could be exploited for learning through well-judged intervention. Now is the time that Dylan could engage with project work on ‘My Body’ or ‘The Seasons’.  Now is when he could be supported to learn makaton signs.  A skilled Speech and Language Therapist could probably equip Dylan with a communication system over the next few years. Now would be the time to support him with drawing and making. Now is when Dylan could benefit from joining in group activities, doing class jobs and learning to be part of a community.

I am not arguing for extended state education (though it is a statutory entitlement to 25 years even though few Local Authorities provide it to young people such as Dylan) but rather for a more individualised approach to when education is accessed. Now that Dylan is 20 I wonder whether he might not have been better off in an alternative care setting until adulthood. While other children his age were in school, Dylan might have benefitted more from walking the moors, play and occupational therapy, travel  and creative approaches to developing the social and emotional landscape and skills which are precursors for learning.  Then, with the development of the skills described here, Dylan could have entered formal education for his 15 years of full time entitlement.  The principle of this would be that educational provision is something which we access when we are ready for and can benefit most from it.

 In Defence of the Age-Inappropriate

While you couldn’t individualise an education system for everyone there must be some individuals for whom an individualised scheduling of education is possible and desirable. And even if it isn’t possible to customise in quite the way I describe here, there must be a way of reducing the emphasis on chronological age.  I have had frequent encounters with well-meaning professionals who express concern at the use of resources which are not age-appropriate. Parents are often discouraged from letting older children and adults engage with materials which are aimed at significantly younger children. While I understand this concern I also know that we learn best when we are motivated.

Dylan is interested in Disney and, at the moment, it is the story of the Little Mermaid which is capturing his attention. At this point in time, this is an appropriate support for Dylan given his emotional, social and cognitive development. So I won’t be preventing him from enjoying his books and DVD – rather I will be encouraging him by offering vocabulary when he asks for it and making links with his own life and the other stories he knows. In time I’ll try to extend his interest; I’m already gently suggesting The Wizard of Oz to him. So if you see me playing counting games or reading Rumble in the Jungle with my 20 year old, don’t condemn me too quickly for not doing age-appropriate activities:  consider, instead, that I might be doing Dylan-appropriate things.

Dylan's 20th Birthday 014

“I Said No”: re-thinking Dylan’s speech

On a visit to Tate Contemporary in Margate last summer I bought Dylan a badge in the Gallery shop.  Reproduced from a Tracey Emin piece, the “I said No” slogan appeared custom made for Dylan.  That holiday Dylan’s constant no-saying was beginning to wear me down.  I fastened it to Dylan’s t-shirt  that day hoping it would help me to a better humour.

Kent August 2012 013Dylan doesn’t have many words but “No” is a word he uses with confidence. I don’t think it was the first word Dylan ever spoke but, because he has so few clear words, it can sometimes feel like the only one.  There is something monumental about first words; indeed, they can become monuments. Soon after Dylan was born my mum reminded me of the baby books in which she and my dad had recorded my developmental milestones. Was I planning to keep such a book for Dylan she asked? With my new-kindled interest in baby behaviour I asked if I could see my own baby book. I was so surprised by what I found there I wrote the following poem (while Dylan was still a baby and before he was diagnosed autistic).

Gone
for Dylan Ariel

I am waiting for you to speak
as you sprawl, staring at the wooden gull above  my bed.
I tilt my head in your face, try my smile
and imagine you mouthing ‘wing’, ‘bird’, ‘fly’.

You draw your knees into a silent curl
then haul yourself to stand against the trembling wall,
throb your tongue against your lips and stumble on the rush of air.
I was you to speak my name, or claim your own, clear and full.

I remember finding my first word:
smoky cellophane crackled in my fingers as I unwrapped
the pages of a pink quilt book to discover father’s insect letters –
my ‘first smile’, ‘first steps’, creeping along their dotted lines.

And there I knew my whole life through a single word:  ‘Gone’.
Could my world, my all-gone world, have started there?
What did I know, in such few months, to name this loss?
I pull you to me, hold you tight, chant these words in your ear:

‘Here’,  ‘Now’,  ‘Yes’.

*
It’s ironic, I think, that the poem ends with a wish that one of my son’s first words is ‘Yes’,  given Dylan’s later use of the word ‘No’. However,  words aren’t always what they seem. When I discovered that the first word I had ever spoken was ‘Gone’ I asked some colleagues who specialise in child development what they made of it.  I had been aghast at the discovery of my first word. What had my parents been doing I wondered?  Why was it not ‘teddy’ or ‘milk’?  I remember being reassured by the explanation that at around nine months babies start to develop an understanding of ‘object permanence’ which is the knowledge that something continues to exist even when we can’t see it.  This is the stage when a baby moves from being absolutely distraught when a parent leaves the room (because they don’t realise they will return) to accepting this more easily because they know that the parent continues to exist somewhere else in the house.  So perhaps I was exploring the concept of object permanence when I spoke that  word  ‘Gone’?

I Said No 001What might Dylan be exploring with “No”?  I haven’t been unduly concerned about Dylan’s use of the word “No”;  he doesn’t use it in a punitive way to indicate reprimand, nor is he repeating language that he hears (I probably have to say “No” to Dylan less than I would to a ‘regular’ teenager). But why does he say it so often? One of the things I enjoy about keeping a blog is the way it encourages me to reflect on my relationship with Dylan – each post I’ve written has required me to think more closely about something in order to describe it. After writing about communicating with Dylan in my previous post I decided to keep a log of Dylan’s speech. I wasn’t sure what I’d find, but I was pretty certain that the word “No” would feature strongly.

So last Sunday I wrote down everything Dylan said from 9am when he got up until around 1.30pm.  I didn’t include vocalisations (his noises and babbles) but only what I considered to be attempts to communicate using language. I tried not to change my behaviour at all; I spoke to Dylan and tried to initiate verbal responses from him in the same way as I normally would, but not more often. In fact, there was probably less speech than usual during the time I was keeping the log because for an hour and a half we were at the Cinema.

Before I present the data from this ‘speech-shadowing’  I should perhaps say a little more about Dylan’s speech. As I’ve described in a previous post, Dylan is classed as ‘non-verbal’ in that he has very few recognisable words and no functional language.  “No” isn’t the only word Dylan says. From around eight years old he has been attempting to verbalise and has developed a system of words and sounds which people who know him can recognise.  However quite a lot of his speech is indistinct.  As well as the difficulty with communication resulting from his autism Dylan appears to have difficulty with the mechanics of speech. He often omits one of the syllables in a two syllable word (‘dinosaur’ is ‘saur’ for example) and certain consonants seem to be difficult for him. Quite a lot of words appear and then disappear. Some are brought back into circulation at a later date. Although Dylan’s core vocabulary bears little resemblance to that of a three year old (his words include ‘shave’ and ‘nettle’) in terms of number, clarity and reliability of use, Dylan’s stage of vocabulary development is probably akin to that of a toddler.

*

Log of Dylan’s speech: Sunday 15th September 2013

9.00-11.00:  at home, preparing to go out for a cinema trip                                

  • morn  [morning]  prompted response to my greeting
  • shtum [soap]  unprompted comment
  • loo [loo] repeating overheard speech
  • dra-he [dressing gown] commenting on what I am wearing
  • ca-he [candle]  showing me a picture in his book
  • ow [ow]  touching the candle flame in his book (copying an action I’ve modelled previously)
  • hair  [hair] asking for this to be washed
  • d-y-l-a-n [ n-a-l-y-d ] pointing to  letters on his door but not matching sound to letter correctly (reversed)
  • de-ya [ Dylan] saying his own name after touching letters
  • cin [cinema] checking that we will still be doing this  (pointing to bag as object of reference)
  • at one [that one] response to a question (which t-shirt?) with accompanying point
  • pu-pel [purple] echoing back my speech
  • The Queen [The Queen] unprompted in response to thoughts (no external prompt). Repeated.
  • oink oink [pig noises] unprompted response to thoughts
  • um-pi [Grumpy] response to thoughts (from Snow White)
  • at one [that one] response to a question (which hat) with accompanying physical selection
  • shoe [shoe] telling me he has it on, needs it fastened

11.00-1.30  journey to and from cinema, with 1.5  hour screening      

  • ding-a-ling [bell noise] unprompted response to thoughts (about his Chinese exercise bells). Repeated.
  • woof woof [dog noise] unprompted response to thoughts (no dogs to be seen)
  • shoe [shoe] unprompted repetition/memory (no function – doesn’t need anything)
  • er – sy [Earthsea] unprompted reference to a favourite film
  • ding-a-ling [bell noise] frequent unprompted response to thoughts
  • moo [moon] Passing Premier Inn (logo)
  • ni – ni [ night- night] response to my conversation about having stayed overnight at a Premier Inn.
  • no  [no] pointing at a cinema which we often go to but saying ‘no’ to indicate we are not going there today.
  • ger-wa [snow white] unprompted response to thoughts
  • no [no] checking directions – i.e. we are not going that way
  • a man [ a man] unprompted commenting (statue of Vulcan on the town hall). Repetitions.
  • ke [ quiet] anticipation of my language – when told in cinema about noise-making names target behaviour
  • laughs [laughs] appropriate laughter (at film), copying mine
  • no [no] to confirm that he can’t eat my banana
  • ba-loo [balloon] commenting on sequence in the film (accompanying point)
  • a man [ a man] unprompted comment on the Vulcan statue as it comes into view when we leave the cinema
  • no [no] checking route by disqualification (i.e. we are not going to stay in town)
  • hurray [hurray] repeating a word in my narrative summary of the film we have just seen  (‘hurray for crop-duster’)
  • no  [no] checking route by disqualification
  • big eyes [big eyes] unprompted commenting on his picture book (candle’s eyes I think)
  • po-tay [potato ] unprompted commenting on his picture book (actually Beast’s nose)

As a parent I found it fascinating to record Dylan’s speech in this way. Even without a background in language development I think it’s possible to make some useful observations from the data. Firstly, that’s quite a long list of words (or attempts at words) for someone who is ‘non-verbal’.  From the speech record it seems that Dylan doesn’t say “No” as much as I thought he did. When he does say it, it’s nearly always in order to clarify which route we are taking or what we are doing . So he is saying “No” in order to establish “so we are not going that way today then?” or “aren’t we going to the Showroom Cinema like we usually do?”. For Dylan, “No” seems to be more of a question:  “No?” Now I think about it, Dylan doesn’t do intonation in his voice, so his “No”  would never modulate upwards to “No?”.  So, all this time he has been asking me a question – and as that is an interactive process, inviting a response, I should be glad of his communicative intent (I am).

I have been aware that Dylan spends a lot of time figuring out what we are doing by elimination. When I’m driving I watch him in my rear view mirror; he pays close attention to the route, looking down the turnings we are not taking and sometimes, when I drive past a junction I might have chosen, saying “No”  – or rather “No?”   Much of Dylan’s life must be spent like a detective, piecing things together with clues and arriving at the answer through elimination. A lot of the time he must have something in his head that he’d quite like to do (that it would be nice to call at a pub for a drink, for example); quite often I intuit this, but I can see that when I don’t it is perfectly reasonable for Dylan to say something. Having done this speech collection exercise, I suspect that this is the function of Dylan’s “No?”.

I Said No 001As it happens I have been trying to address the issue raised by Dylan’s “No” recently by developing an i-pad as a communication tool; this not only helps me to explain to Dylan where we are going but allows Dylan to choose sometimes (more on this in a future blog). So I think I was aware that this was an issue – what the speech collection exercise has done has confirmed this for me. It has also challenged some assumptions I had about Dylan’s communication. For example I now think he makes more attempts to speak than I realised; that he tries two syllable words more often than I thought; and that his difficulty with some consonants and sounds is more significant than I imagined.  I can also see that some of his most verbal times are when he’s out and about (which he enjoys).

I have always known that Dylan has a rich interior life with thoughts, memories and imaginings, and the speech record confirms for me that he spends a lot of time, even when he is in company, thinking about his books, favourite characters from his films, and objects and memories he enjoys.  In my previous post about communication I mentioned that the pointing gesture which I particularly rejoice in is the one which ‘shares the world’ with me and in the record of Dylan’s speech I can see this tendency as well, with him commenting on familiar landmarks such as the Vulcan statue on Town Hall and the balloons in the film. There is also evidence of imaginative play (pretend burning of his fingers on the candle flame in his book) and socially-appropriate behaviour (returning my greeting and showing awareness of appropriate behaviour in the cinema). The exercise, then, has illustrated to me what Dylan is already achieving, and is capable of, rather than any deficit.

Collecting this limited record of Dylan’s speech has given me a lot to think about. If I had a background in language development then presumably it could help me identify some targets for developing Dylan’s communication and plan some interventions. Isn’t this the sort of support which autistic children and adults should be receiving? Dylan had access to speech and language therapy while he was at school but I suspect the support was more often directed at groups of learners (and their class teachers) than at individuals. Surely it isn’t too much to ask that some resource is directed to support the communication of autistic adults beyond school?  That resource does not have to be intensive but it does need to be specialised. Parents, carers and support workers can take on development work but we need professional advice so that our interventions are not just sensible but informed. As I pointed out in my previous post, support with speech and language therapy is essential if adults with restricted speech such as Dylan are to function with some independence in the community and live fulfilled lives.

Reference:

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

Tap Three Times: communicating without speech

owl babiesAlthough my 19 year old son is ‘non-verbal’ he takes an interest in a range of language-based activities. In describing Dylan as non-verbal I wouldn’t want to give the impression that he is silent; on the contrary he is very vocal. Few autistic people are completely ‘non-verbal’; most children and adults have some recognisable sounds which they use to communicate even if they tend not to use speech. It has been suggested that ‘restricted-verbal’ is a more accurate description than non-verbal. I’d say that’s a fair description of Dylan’s relationship with speech at the moment; he has a range of creative strategies which he uses pretty effectively in order to meet his needs and he enriches these with some limited verbal communication.

Any parent who has observed their child developing language will have witnessed the role of clapping, turn-taking, repetition, chanting and rhyme in the development of speech. As a poet, also, I know the power of language and the way in which these patterns can charm themselves into the brain.  We know that these are really helpful linguistic resources to offer babies and toddlers in the ‘pre-verbal’ stage so I’m not really surprised that the things which seem to trigger Dylan’s attempts at speech are picture books and songs with rhythm and rhyme.

Dylan’s current vocalisations include include ‘songs’ and calls, onomatopoeic sounds and a range of repetitions and habitual noises which are not unlike a baby’s babble. He left school last summer and at the moment I’m looking for an adult education placement so that specialist staff can continue to support Dylan to develop his communication.  Last week a ‘man from the council’ came with me to visit a potential provider. During the drive I explained to him why it was important that Dylan continued to access this sort of provision. My son, I pointed out, was showing signs that he was becoming more language-aware.  The developmental delay associated with Dylan’s learning disability and autism was significant but he was making progress and I was convinced he had potential for more.  “If you look into his eyes”  I said to the man from the council, “you can see how alert he is …

*

A memory.  It is the Easter following Dylan’s birth and on the first warm day of the year I have driven to Charleston House on the Sussex coast . Dylan is just over a month old and dressed in a blue striped suit and sun hat. I am sitting in the gardens with the baby beside me in the grass. Two sensibly-dressed middle-aged women walk past and glance at Dylan: “what an alert baby you have”, one of them exclaims, “you must talk to him a lot?” 

charleston

Charleston House, Sussex

Two years later, when Dylan was assessed for autism, I thought about the women at Charleston House. Perhaps the memory helped me to deny there was an issue with Dylan’s language development (even if I acknowledged his autistic behaviours). I thought my clever toddler was having a laugh. I remember one night whispering to him: “come on Dylan – I know you can talk – just one or two words –  that’s all  – just something to show you can.”  I was scared we were on an elevator that we wouldn’t get off; that Dylan would receive a forever label.

As it turned out the professionals involved in Dylan’s care were not keen on labels.  They weren’t useful, I was told, unless they helped to access resources.  So without any assumptions about Dylan’s language development (though with an ‘it looks like autism’ verdict) we joined early intervention groups with other families whose children were causing concern. I had given up on Penelope Leach’s ‘From Birth to Five’ at some point during Dylan’s first 18 months. The baby milestones she described seemed less and less relevant to Dylan and increasingly unhelpful. So when I discovered a network of parents accessing children’s services, they became my new reference point.

*

Parents  of children undergoing assessments for development delay compare their children with others in the same way that parents of ‘neurotypical’ children make comparisons at play dates.  This can be comforting, at least temporarily, as it helps establish a new norm; saying or hearing the words ‘oh my child doesn’t either’ makes your child part of a group and this sense of belonging, and of similarity instead of difference, is helpful. However, just as there can be peer-generated pressures among parents of mainstream children – whether a child can draw a recognisable human being by a certain age, count to 20 or write her own name for example – so there can be peer-generated pressures among parents of children with special needs.

Because these pressures almost always arise from a perception that access to resources are performance-driven and limited, they tend to create stress. On the run-up to Dylan reaching school age, I felt under pressure from a commonly-shared belief among parents (corroborated by some professionals at the time) that in order to secure a place at the sought-after local specialist school, Dylan had to be out of nappies and talking before he was five. Also difficult was the wisdom circulating that: ‘if your child isn’t talking by five he probably never will.’

Having established a ‘new norm’ it was hard to watch as other children who had appeared similar to Dylan became verbal and made progress in leaps and bounds.  But these developmental surges also gave me hope; if another child could undergo such apparent transformation, then so could mine. In time, however, I realised that Dylan had his own trajectory; he made progress, but it tended to be slower than other children. Dylan’s learning disability was far more significant than I’d imagined initially and, it transpired, his ‘communication impairment’ was severe.

*

Dylan was not talking by 5 years old and at 19 is still classed as ‘non-verbal’.  Although everyone with an autism diagnosis experiences difficulty with communication to some degree, the gap between the non-verbal and highly verbal adult can create a sense of it being a very wide spectrum indeed. Recently I was part of a small lobby group which met with Nick Clegg  (my constituency MP) to discuss adult services for autistic people in my area. In order to raise  awareness of the spectrum nature of autism the group included myself (as a representative of someone who also has a learning disability and is ‘non-verbal’) and an able and articulate autistic woman. After the meeting  I was chatting about Dylan and must have used language sloppily as, at some point,  she quite rightly interrupted to remind me that while Dylan might not be verbal, it didn’t mean that he couldn’t communicate: “Someone with autism is communicating every time they get angry”, she told me.

Dylan doesn’t often get angry but he does sometimes get frustrated.  I think that this frustration is frequently at his failure to make himself understood – some of Dylan’s behaviour (such as standing jumps) is Dylan trying to communicate that communication isn’t working.  When communication between us does work it is often based on me intuiting what Dylan feels, needs or wants from his actions. At a very basic level Dylan uses ‘motoric communication’. This means that he uses my body as an extension of his own.  Dylan is adept at leading (or, if I am resisting, pushing and pulling) me to where he wants to be, or to show me what he wants. This usually involves him manipulating my right arm, but sometimes he uses my finger to indicate what he wants or to show me the help he needs. This is a mode of communication which Dylan has been using since he was a toddler and which I try to discourage now he is physically much stronger than me and capable of more sophisticated strategies.

Communicating with me through representations of an action, rather than through the action itself, is one such strategy. Dylan can recognise and use photographic and representational  images to communicate and is confident with rebus symbols, picture exchange systems, visual timetables and increasingly with communication software. Of course pictures are not always available but Dylan is good at improvising through ‘objects of reference’. If Dylan wants to walk he might bring his coat or shoes, for example, and he uses a particular backpack to request information about the daily schedule.  As well as actions, pictures and objects, Dylan sometimes uses gesture to communicate. Although he doesn’t sign, Dylan increasingly gesticulates with his hands and even at times shapes a point. There are different kinds of point; an ‘indicative point’ might be used in response to a question (‘Dylan which T-Shirt do you want to wear?) while a ‘declarative point’ is more of a statement than a response and important in that it can initiate communication. The point I am most interested in, however, is one which ‘shares the world’ with me; if Dylan points in order to show me something (a duck for example) then this is a high point of my day indeed.

*

A memory.  It is a winter morning and I am loading Dylan into the baby seat in the back of my car. He is around 20 months old. My new partner is hovering on the pavement to wave us off. I get into the driver’s seat and turn round to Dylan: “Look” I say pointing at the face in Dylan’s window, “wave bye bye”. Dylan looks blank. His arm lies limply in his lap, then he half-lifts it in a sloppy arc.  I think to myself it is hardly even  a wave…

I had noticed something important that morning. Within a few weeks of this memory, Dylan had lost his non-verbal communication completely and it would be many years before I saw him wave again. However, I remembered Dylan’s earlier use of gesture and had clear memories of him sitting on my lap pointing to things in his picture books and waving goodbye to people. Only very recently have these gestures started to return. Dylan’s new wave is fast and flappy but he uses it appropriately and knows what it means, and his indicative point – with a flamboyant final flourish – is increasingly reliable. He has also developed some gestures which are all his own; three taps on his chest or mine means ‘I love you’ for example…

owl babies 2Tapping three times on your chest is an action Dylan has based on a gesture I make when reading the last page of Waddell’s ‘Owl Babies’. In the story the mother owl returns after a night’s hunting to her three owlets and the smallest, ‘little Bill’, jumps up and down on his branch declaring: “I love my mummy”. Rather than bounce up and down while reading to Dylan, I developed the action of three taps on his chest and over the years Dylan has copied this gesture.

*

Increasingly I see in Dylan an awareness of his own limitations and difficulties. When he was younger I thought I saw this in his more able peers but felt that Dylan was to a large extent free of self-awareness and therefore of any sense of difference or failure.  Recently, as Dylan has made more attempts to communicate, I have noticed how disheartened and anxious he can become if I don’t understand him or respond positively. If he attempts a word I don’t recognise, for example, and I ask him to say it again, he will often retreat to a quite different but familiar word  – usually ‘The Queen’ (as in Snow White). Given the lack of clarity in Dylan’s speech and the individual nature of some of his gestures (such as tapping three times), establishing a system of communication with which Dylan can be understood in the community as well as (with luck and patience) the home, is surely worthwhile.

Any limitation on the effectiveness of Dylan’s communication probably has more to do with our inability to understand than with Dylan’s intent to communicate. Clearly, however, it would be ‘a good thing’ if Dylan could be helped to develop more speech as that would give him some independence in the community and increase his potential effectiveness as a member of society. I don’t know whether Dylan’s increasing interest in language will continue or not, but – as I explained to the ‘man from the council’  – I’m fairly certain there are things we could and should be doing to help. In England the policy on funding educational support for post-19 adults is in flux but the new 0-25 SEN code could potentially offer such an opportunity.