Dylan And The Dinosaur Of Anxiety

WP_20141228_18_22_41_ProSince last June I’ve been puzzling over some ‘challenging behaviours’ which Dylan developed out of the blue after twenty years of gentleness. The behaviours began with periods during which Dylan threw himself around violently and progressed to physical attacks on others, usually focused on ears. Prior to these episodes Dylan would often go into a trance-like state and during the incidents would appear not to recognise familiar people. At these times Dylan would be ‘unreachable’ and afterwards appear exhausted and seem not to have any recollection of events.

I have described my search for possible explanations for the behaviours, and the methods I used to document them, in previous posts (for example here and here). As my approach to working with Dylan (who doesn’t use speech to communicate and who has a significant learning disability) has always been that behaviour is communication I focused initially on environmental factors. There had been so much change in Dylan’s life that this seemed a likely explanation: in the previous few years he had experienced the death of his Gran and departure of his sister and had left education and care settings where he had been happy. Furthermore, Dylan’s provision on leaving school lacked the consistency he needed. These changes seemed a plausible explanation for Dylan’s distress.

The episodes declined following some adjustments to Dylan’s day care: full-time rather than part-time attendance, a change of support worker and an increase in Occupational Therapy all seemed to help. Other possibilities presented themselves. The ABC charts I used to analyse the behaviours suggested, for example, that they may be linked to food. Removing sugar from Dylan’s diet appeared to have an impact; the incidents which had been happening daily reduced to around once a week. I continued to puzzle, however, over behaviours which, while less frequent, became increasingly severe.

Neurological investigations

WP_20141228_18_22_49_ProDue to the symptoms which accompany the behaviours (the ‘absences’ and exhausted aftermath) Dylan’s GP referred him for neurological investigation. Epilepsy and schizophrenia can develop around the age Dylan is currently so I had specific concerns that Dylan’s behaviours may be due to the onset of one or both of these.

It took a while for Dylan to access an appropriate clinic. The first consultant we saw had no experience with ‘non-verbal’ patients with learning disability and autism and simply shook his head. The colleague he passed Dylan onto, however, was experienced and skilled. Dylan doesn’t tolerate medical interventions (I have written about this here and here) so I knew it would be challenging if recommended. Happily, the consultant whose clinic we had arrived at understood this.

WP_20141230_18_53_14_ProWithout medical investigations (MRI, EEG) he couldn’t say definitively but in his view, the neurologist said, Dylan probably wasn’t developing epilepsy or schizophrenia. The pattern of the episodes – their incidence and duration and Dylan’s response during and after – did not fit with the classic presentation. He couldn’t rule it out entirely – there were instances of epilepsy triggering the sorts of behaviours I had described – but these were rare.

It was much more likely that Dylan’s behaviour was a reaction to environmental factors or maturation. Puberty, the neurologist pointed out, can trigger emotional reactions which are difficult for any young person to make sense of; for Dylan, these feelings could be quite confusing. ‘He is a strong young man’, the consultant observed. ‘And you, if you will excuse me saying, are not a young woman or strong like this’. Keeping Dylan physically active would help, he told me.

I preferred to believe it was consultants who were getting younger rather than I who was getting older, I told him. But, I reassured the consultant, Dylan’s schedule was filled with OT and sports activities which, I agreed, were helpful. The consultant smiled. Then he told me how – years before, while practicing in WP_20141231_16_56_00_ProGermany – he had observed that the adults with learning disabilities in a institutional setting he visited exhibited challenging behaviour for 51 weeks a year. But once a year, he told me, the residents were taken on holiday where they had access to expansive grounds and were able to run free. During this week each year, he said, the behaviours disappeared.

The neurologist realised (I think) that Dylan has an active life and was not intending to draw a direct comparison between Dylan and the adults in his story. What he was reflecting, however, was that behaviour is usually communication. In a follow-up letter to me he wrote: “I thought that it was most likely that the behaviours you describe are dissociative coping behaviours. I suspect that they help Dylan to deal with some form of distress… Hopefully you and Dylan’s other carers will, in time, be able to learn even more about what is likely to trigger attacks so that his care can be modified and that attacks can either be avoided or contained more effectively.”

Environmental explanations

This makes sense to me. It is also the sense which Phoebe Caldwell, in her marvellous book Finding You Finding Me (Jessica Kingsley, 2006) makes of such behaviours. It isn’t a new book but I stumbled across it (via a circuitous route through poetry and Rowan Williams) only recently. How could I have missed it? I haven’t finished reading it yet but already it has changed my world. I’ll say more about the book in a later post. For the moment I want to share just a couple of things Caldwell has to say which seem particularly pertinent:

Families may be at their wits’ end – and sometimes feeling guilty at their despair… I meet staff who are being asked to cope with impossible levels of aggression and management who are unable to come up with solutions. In many cases, person-centred planning is interpreted as how we can fit individuals into our agendas. Quite a number of the people in the most deep distress are boys fighting their way through the hormonal jungle of puberty. (pp. 25-26)

As for those whose severe learning disabilities are compounded by autism and who cannot speak for themselves, all we can do is judge from their behavioural responses to people and their environment. From the evidence of the sometimes extreme behavioural distress, one has to presume that many of them do continue experiencing fragmentation [a process arising from overload in which sensory experience breaks down ] throughout adult life. They cannot help themselves through logic and communication: their only resort is to develop coping strategies, which can so often include severe aggression. (p. 35)

WP_20150106_16_15_42_ProI am sure that the consultant psychiatrist who has become involved with Dylan’s care has read Phoebe Caldwell’s work; I shall ask her when I meet with her again next week. Because as well as Dylan’s referral to a consultant neurologist I requested a referral to a local intensive support service. While this dual track (medical and social) approach could have resulted in conflicting verdicts, happily on this occasion the professionals align. The psychiatrist’s preliminary assessment, like the consultant neurologist’s, is that Dylan’s behaviours are likely to be due to environmental triggers. In particular, it is suggested, Dylan’s distress is probably caused by anxiety.

I have found this triangulation of professional perspectives helpful in that it has allowed me to go forwards with more confidence; a convergence of views on cause helps clarify response. In his letter to me the neurologist described Dylan’s behaviours as functional in that episodes ‘move [Dylan] on from experiencing distress to a place in which he cannot recall the distress and perhaps feels physically exhausted’. The psychiatrist has suggested that it is possible to help Dylan to ‘unlearn’ a behaviour that he has come to associate with such release from stress. At the moment Dylan is so fixated on removing my ears that the possibility I can re-direct this behaviour feels out of reach. The fact that the psychiatrist believes this is a reasonable goal, however, keeps me optimistic.

The unlearning

WP_20150114_08_23_04_ProI have had some unlearning of my own to do. Although I am not a neurologist, psychiatrist, care worker or speech and language therapist, working in education means that I am familiar with some of the theory and practice. Education is distinctive for its multi-disciplinarity; as well as combining ideas from sociology, psychology, history and philosophy, educationalists increasingly look to areas such as health and well-being and to the natural and human sciences. What this can encourage is a degree of comfort when dealing with other disciplines. Furthermore, my work in education means I am used to a cycle of monitoring, assessing, recording and reporting. It was easy and natural for me, therefore, to set up the sort of data-gathering exercise which I knew would be an important part of Dylan’s assessment.

Going into my initial meetings with professionals I reflected that I was probably ahead of a system which would (I presumed) require me to produce data I had already collected. It was with a sense of resignation then (not, I hope, arrogance) that in advance of the meeting I asked myself what a psychiatrist might tell me that I didn’t already know. Happily, however, there turned out to be plenty. With building interest and admiration I watched the psychiatrist bring her professional knowledge and understanding to the data I had collected. While I might be able to observe and record my son, I realised, what I didn’t have was this particular lens through which to filter the material. What I also lacked was the wide experience of other young men like Dylan which the psychiatrist could draw upon (for while Dylan may be different he could also be similar).

When I am supervising education research projects I tell students that what they are looking for in the data is ‘pattern and paradox'; the most valuable questions and answers, I suggest to them, will be found where similarities or differences emerge. After the first meeting with Dylan’s psychiatrist it occurred to me that she had adopted a similar approach. With her expertise and experience, however, she had quickly been able to identify the significant patterns I hadn’t found. My data charts had lots of good notes in them but they were in search of a tune; what the psychiatrist did, I reflected afterwards, was orchestrate.

The Dinosaur

WP_20150114_08_22_33_ProWhile supporting Dylan to ‘unlearn’ (inappropriate) coping responses will be useful, it is obviously preferable to modify the environment so as to reduce Dylan’s distress. The psychiatrist’s ‘orchestration’ of my observations of Dylan therefore focused on the identification of possible explanations for his anxiety. I liked the way she wove observations together to make connections I hadn’t considered.

One issue raised, for example, was that the first occurrence of the behaviour happened while Dylan was in overnight respite the week after I had taken my first break without him (which I wrote about here). It might be the case, the psychiatrist suggested, that although Dylan appeared to cope while I was away perhaps the following week, when Dylan returned to respite care for his regular overnight stay, he was made anxious by uncertainty as to how long I would be gone.

Some of the most challenging incidents have happened while Dylan has been viewing DVDs and during the meeting we were able to link possible anxiety about separation with Dylan’s reaction to certain film sequences. One scene which seems to cause Dylan particular distress is a moment in Dinosaur when an egg becomes separated from the mother. Those involved in Dylan’s care had been aware that such scenes can trigger behaviours. We had also noted the impact of my short break on Dylan and tentatively used the word ‘separation’. What the consultant was able to do, however, was confirm that this might be relevant while at the same time signalling its necessary complexity.

Necessary Complexity

WP_20150120_15_01_11_Pro-1The complexity is that we might have two dinosaurs rather than one. Because if it is the case that a son or daughter is anxious about separation, a mother’s intuitive response (especially an anxious mother) can be to avoid separation. Instead of planning for Dylan to spend increasing time away from me as preparation for leaving home, my instinct now was to keep him close. The dinosaur of anxiety could be mine, then, aswell?

But the psychiatrist wasn’t going to allow this; her job was to get rid of the dinosaur not let another one into the room. Dylan she said (offering another version of what the neurologist said) is in his prime; he doesn’t want to go collecting leaves with his mum. I looked at her aghast. How did she know that’s what we’d been doing at the weekend? B-b-but he likes doing that, I retorted. He liked it, she pointed out, because it was what he knew. What I needed to do was support him to do other things too, confidently and without me. In order to deal with separation anxiety, it seems, we have to learn to be separate. That will be a dinosaur of a challenge for me as much as for Dylan, I know.

The metaphor

WP_20150120_15_02_10_Pro-1Shortly after the meeting my attention was caught by a ‘hatch your own dinosaur egg’ pocket money toy (for £2.99). I couldn’t resist buying it as a Christmas stocking filler for Dylan. You put the egg in a jug of cool water and increased the size of the container as the hatching progressed; perhaps looking after the egg could help re-shape Dylan’s response to the film sequence?

The egg showed no sign of life for a few days and Dylan paid no attention to it. One evening, however, a crack appeared, quickly followed by a green nose. Dylan seemed alarmed so I moved the egg from his bedroom to the kitchen where we could keep an eye on it together. The rest of our holiday was spent checking the egg. Dylan’s response shifted, slowly as a dinosaur, from anxiety about its presence to curiosity. By New Year’s Eve the birth seemed imminent and Dylan interested. If it hatches before midnight, I told him, we’ll call her Eve. If she appears tomorrow she will have to be New Year’s Day-sy.

And so it was that after twelve days Daisy was born. Since her arrival she has continued to grow as Dylan – who seems to really like her – bathes with her twice a day. Unfortunately Daisy’s skin seems to be ‘pruning’ badly (the warm water I suspect) and we may soon be faced with a tough decision about the future. Daisy may only be a metaphor, but she could be quite a useful one…

 Reference:

Caldwell, P. (2006) Finding You Finding Me. Jessica Kingsley

All photographs are of Daisy.

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) through 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

:-)

More Difficulties: ‘independence’ and ‘competence’

material literacy 008In my last post I challenged the way we conceptualise ‘friendship’ suggesting that our dominant model is not only inadequate in relation to autism but that it can problematise children more generally, particularly within educational environments. In this post I identify difficulties with two further concepts, ‘independence’ and ‘competence’.

‘Independence’ is a concept which is frequently applied to the disabled community by policy makers, professionals and service providers. The use of the term has already been eloquently challenged by others (I provide links to a couple of examples at the end of this post) and my intention here is only to add a couple of reflections of my own. The other concept, ‘competence’, is used by the disabled community itself (as in ‘presume competence’) but is a term which I argue may also be considered problematic.

Defining independence

1. free from control in action, judgment, etc; autonomous
2. not dependent on anything else for function, validity, etc; separate
3. not reliant on the support, esp financial support, of others
4. capable of acting for oneself or on one’s own
5. providing a large unearned sum towards one’s support (esp in the phrases independent income, independent means)
6. living on an unearned income

[Collins English Dictionary (mathematical definitions omitted)]

August 2012, Monsal and Grindleford 005Policy makers and service providers bandy the word ‘independence’ around constantly. Dylan, I am told, must be supported to be an independent adult. Since he left school he has received a personal budget which is intended to facilitate such independence. I don’t think I’ve filled in a form, attended a meeting or read a Dylan-related document where the word ‘independence’ hasn’t been used at least once. I used to interject every time the word was used: excuse me but I don’t think you understand – ‘independence’ isn’t an appropriate concept in relation to Dylan. After a while I realised there wasn’t any point; ‘the I word’ was on a checklist and would be raised so a box could be ticked.

The nature of Dylan’s disability (the particular combination of his autism and learning disability) mean that he is not now (and probably never will be) able to act autonomously or separately or without support from others or alone. Dylan meets only one of the above definitions of independence and then not in the sense intended; ‘living on an unearned income’ usually refers to stocks and shares not to disability benefit.

Independence and economics

August 2012, Monsal and Grindleford 007I like the definitions of ‘independence’ provided by Collins because they include reference to finance and economics. And the obsession with supporting disabled people to achieve independence is, I would argue, solely about resources: the reason policy makers, social workers and civil servants want autistic people to ‘achieve independence’ is because it is cheaper. If Dylan and his peers can be independent (even for part of their lives) then their support levels can be adjusted and the cost of care reduced. Under the guise of promoting independence, savings in social care are made.

August 2012, Monsal and Grindleford 008Actually, the independence we urge on neurotypical young adults is probably also chiefly economic. When we tell our teenage children that they must learn to ‘stand on their own two feet’ what we are usually talking about is financial not practical or emotional independence. While the drive for such independence may be appropriate for many of us, young adults with an Autistic Spectrum Condition need support with their lives to varying degrees. In the UK the preferred approach to achieving budget cuts is to reduce support to those judged least in need. Far from supporting independence, however, such cuts can jeopardise the ability to live semi-independently in the community as one of the links at the end of this post illustrates.

Interdependence and community

independence 013But my concern about the conceptualisation of ‘independence’ is not only that the real agenda behind it is economic. At a more philosophical level I am troubled by the suggestion that ‘independence’ is something inherently valuable which we should all be aiming for. Surely we should be emphasising our interdependence and promoting relationships which are mutually supportive? Should we not be encouraging members of society away from the sense that they are self-sufficient and self-sustaining, independent of the society of which they are part? Isn’t that the sort of thinking which allows communities to isolate and fragment?

And in any case, what exactly is the problem with ‘dependence’? Aren’t we all dependent on others for some of our needs as human beings and members of society? Dylan might be more dependent on others than most of us, but that doesn’t make him any less precious as a human being. I am deeply uncomfortable with the apparent pressure on us to measure somebody’s worth in terms of their independence from others; being emotionally, practically or financially dependent on others does not make someone less valuable.

Defining competence

As it happens one of the historic definitions of ‘competence’ relates to economic independence though this is not the sense in which I am interested in the word for purposes of this post.

1. the condition of being capable; ability
2. a sufficient income to live on
3. the state of being legally competent or qualified

[Collins English Dictionary]

independence 015‘Competence’ is increasingly applied by the autistic community (particularly within the US) in the sense of being capable; we should, it is suggested, ‘presume competence’ in our autistic children, particularly those who do not speak. Not being verbal, it is pointed out, is not the same as not being capable; the dangerous default position of the past has been to assume that an autistic child who doesn’t speak is intellectually impaired and incompetent.

Some marvellous and moving stories have emerged from those parents and professionals who have ‘presumed competence’ in autistic children; the shift in attitude from presuming a child cannot do something to presuming they can has produced startling outcomes for some families, often via ‘facilitated communication’ (there is a link to one such example at the end of this post). These stories have also, however, created something of a backlash from other parents, particularly those caring for autistic children with a significant learning disability or co-morbid condition.

To do and to be

independence 011For some parents, presuming competence of their children is hard because it can set up the potential for failure. As the parent of a young man with a significant learning disability I understand this concern. I’m not suggesting, however, that we should start from the assumption that a child cannot achieve; for me, the difficulty is in the use of the word ‘competence’ rather than with the risk of disappointment. For just as I don’t think being independent makes somebody a more valuable person, so I don’t believe that a competent person is any better than somebody who can’t do or say something. So my concern with ‘presuming competence’ is that we are giving status to achievement and suggesting that a person’s worth is measured by their ability to achieve.

But perhaps the word ‘competence’ just rattles me because in my professional field it comes with negative connotations. In England in the early 1990s there was a move from Initial Teacher Education in the Universities to Initial Teacher Training in schools. As part of this policy drift a curriculum for teachers was established at the heart of which were a set of professional competences. Teacher educators argued at the time (and since) that these competences reduce the work of a teacher to a set of instrumental skills while not capturing the philosophy of being a teacher. When working with children and young people, they suggested, teachers draw on values and beliefs about education which cannot be reduced to a set of ‘can do’ competences. From such a perspective, becoming a teacher is not a question of ‘to do’ but ‘to be’. Similarly, Dylan is a valuable person and human being because of who he is, not because of what he can do.

Presume nothing

independence 012Perhaps, as a result, I resist the word ‘competence’. The Collins dictionary offers another definition of ‘competence’, however (the omitted definition 4 relates to embryology):

5. (linguistics) (in transformational grammar) the form of the human language faculty, independent of its psychological embodiment in actual human beings

Perhaps it is linguistic competence, specifically, which parents are being encouraged to presume in their children by others in the autism community? This seems to me to be likely given that the lobby for presuming competence is often allied to the Facilitated Communication movement. Perhaps I am being a bit pedantic when I suggest that, if this is the case, it might be helpful if we referred to ‘presuming linguistic competence’ rather than presuming competence more generally?

independence 009

Am I comfortable presuming linguistic competence of Dylan? To some extent. I have tried to facilitate Dylan’s communication in various ways and have provided him with a range of opportunities: signing, letters, pictures, a keyboard, symbols, talking software. Some of these have helped but I still have the sense that Dylan’s linguistic competence is compromised, perhaps by childhood meningitis (which you can read about here).

Having said that, Dylan’s receptive language skills continually surprise me. A few weeks ago, for example, I was listening to BBC Radio 4 (a news and current affairs channel) while driving Dylan to his day centre one morning. A couple of politicians were engaged in the usual bluster. ‘You’re barking up the wrong tree there’ one of them said to the other. From the back seat Dylan added his voice: ‘woof woof, woof woof’.

miscellaneous 001I laughed so hard. I had no idea that Dylan listened in to the radio or was capable of processing the noise of a broadcast, even at keyword level. I have always tried to keep an open mind with Dylan but the incident reminded me of how important this is. My motto, if I have one, is not ‘presume competence’ or even ‘presume linguistic competence’ but ‘presume nothing’.

Useful resources

  • This link is to the blog of a parent who uses Facilitated Communication with her autistic daughter and who reflects on issues around ‘presumed competence’ :
    http://emmashopebook.com/about-2/

Images

The photographs of Dylan on climbing frames were taken at school and in Grindleford playground. Dylan went to a climbing centre with a group from his day centre recently and as the photos show this was a great success. Coming down was, apparently, more challenging than going up.  The final photograph is of me on a glass walkway.

Autism And Friendship: learning from Dylan

I’ve had cause to reflect on friendship recently, partly triggered by Dylan’s social life and partly by an event in the workplace which left me with some questions. In this post I apply my reflections on Dylan’s relationships to the neurotypical world and suggest ways in which we might re-think ‘friendship’.

Ruby*

Dylan July 13 003Last week I took Dylan to the 21st birthday of a young woman he has known since primary school. Dylan and Ruby have grown into beautiful young adults, I thought to myself as I watched them at the party. Ruby had opted for a disco buffet for her celebration. It was a perfect choice; there is nothing like food and dancing to bring together men and women, old and young, family and friends and the autistic and neurotypical.

Dylan’s dancing style is centrifugal; he and I spun each other around, jumping and hopping in ever-increasing circles. I don’t know what Ruby made of Dylan’s dancing but I figured it might be pretty similar to the way I looked at men at discos when I was her age. She can’t have thought it too awful though as she let her mum dance with Dylan for a while.

As well as dancing Dylan took the opportunity to be wine waiter (as I don’t drink anymore he doesn’t get to do this at home). He held tightly to a bottle of wine, pouring large glasses and doing ‘chink chink cheers’ with whoever was willing. He also enjoyed the buffet. When my back was turned Dylan removed and ate all the sausages from the sausage rolls, leaving the pastry cases in perfect curls on the plate. I suspect he ate all of the chicken nugget supply. For Dylan, this was the ideal party: there aren’t many places you can steal sausages, play with wine and dance like a dervish.

Dylan and Ruby haven’t always been comfortable sharing their space. Over the years there have been a number of altercations and they have sometimes needed separating. If I got a phone call from school to say Dylan had been involved in an incident I would automatically ask ‘and is Ruby alright?’. They could still annoy each other I’m sure – indeed we had to abort a walk which set off on the wrong foot recently – but happily having Dylan at the party was a success.

Stepping stones and splash holes

party time 005Dylan doesn’t get to go to many parties. When he was young I organised birthday celebrations at autism-friendly venues such as soft play centres. In time, however, I realised these were not enjoyable experiences for Dylan. Birthday parties were stressful; as well as the challenge of the environment and disruption to routine, guests are noisy, unpredictable and annoying. Dylan much preferred to celebrate his birthday with a family meal at a quiet pub.

Dylan, like many young people with autism, likes to spend time alone. If I arranged for other children to come to the house he would spend the whole visit in a state of anxiety. Other autistic children would go through his DVD collection and toys, interfering with his careful ordering and disrupting his environment. They would want to watch a film which wasn’t on his schedule for the day. Even if they chose the right film, Dylan doesn’t like watching with other people in the room. While generally tolerant of the children he was alongside at school, he didn’t want them in his space at home.

Once I’d realised this I stopped organising such ‘opportunities’. Why impose my ideas of what is appropriate on Dylan? He didn’t want to do play dates. As Dylan entered his adolescent years I discovered that he could tolerate contact with peers for selected activities. A walk in a local valley in the company of a young man Dylan had been at school with was fine, for example; although they didn’t walk together they walked in a similar manner to the same route and destination. Similarly Dylan was quite happy with an occasional picnic trip with Ruby to a bend in the river where they could play separately on the stepping stones (Dylan) and in the splash holes (Ruby).

Ella

Easter 2014 034It’s hard, as the parent of an autistic child, to know how best to support peer group ‘friendships’. While I didn’t want to put Dylan in situations he found stressful, neither did I wish to write off the potential benefits of peer group contact. As well as respecting Dylan’s preference for spending time alone, however, there were other factors which prevented me from setting up more play dates.

Organising social events for autistic children is hard when your child attends a special school. Although you become familiar with the other children on the bus your child travels on, you may never meet their parents. Furthermore, there are few occasions when you get to visit your child’s school at the same time as other families. In this situation it isn’t easy to make connections with the parents of your child’s peer group. It was a happy chance, then, when it turned out that a new friend through my poetry networks had an autistic daughter the same age as Dylan.

I have written a little about Dylan’s trips out with Ella here, here and here. Although Dylan pays only scant attention to Ella, his relationship with her marks a development in Dylan’s understanding of peer group relationships. He has learned, for example, that he can meet people outside the context of school who have similar interests to him. I’ll never forget Dylan’s astonishment when, visiting Ella at home one day, he discovered that her VHS and DVD collection was almost a complete copy of his own. I also learned, as he pulled all Ella’s films off her shelves and spread them around her bedroom floor (Ella looking on in increasing agitation) that Dylan can be just as annoying to his autistic peers as they are to him.

Christopher*

party time 004Dylan’s relationships with Ruby and Ella are fairly typical of his peer group friendships. I don’t think the fact they are with the opposite sex is especially significant although as Dylan grew up in a predominantly female household I suppose he may feel more comfortable with girls. For a while when he was younger, however, Dylan had a quite exceptional friendship with a boy called Christopher.

For a long time I didn’t know about Christopher. One day however, dropping Dylan off at his primary school following an appointment, I was surprised to see him approach another child and give him an excited squeeze. Anxious about the physical contact I made to intervene but Dylan’s class teacher stopped me: ‘It’s alright – that’s Dylan’s little friend ‘ she said. ‘They’re pleased to see each other. ‘Friend? Dylan? I had never seen Dylan pay attention to anyone his own age except for his sister and step-sister.

Dylan treats siblings as honorary adults. At a young age Dylan discovered that people his own size at home could help him to the things he wanted in the same way parents could; they could rewind videos, reach a packet of crisps, fasten shoelaces and play clapping games. ‘Sister’ and ‘Mog’ were therefore acceptable to Dylan, an interest which I liked to believe was not wholly instrumental. Apart from this, other children (especially if they were smaller) were to be avoided. Until Christopher.

I didn’t have many opportunities to see Dylan and Christopher together. Once however, while shopping at a supermarket the other side of town, Dylan suddenly ran off. When I caught up with Dylan he was at the other side of the checkout counter, holding Christopher’s hand and making greeting noises. I loved that Dylan had spotted his friend and gone to say hello. Later, when we moved to that part of the city, Dylan and Christopher travelled to and from school on the same minibus. I didn’t get to see them together as Dylan was collected before and dropped off after Christopher, but the escort often told me about their special friendship.

Perhaps in time the friendship between Dylan and Christopher would have moved to out of school contact. One day, however, there was an incident on the bus; Christopher and Dylan got upset and in the kerfuffle Dylan was hit by a flailing arm. This had a significant effect on Dylan who became wary, preferring to sit alone on the bus and no longer interacting freely with Christopher. No matter how much I tried to explain that what had happened was an ‘accident’ Dylan could not be reassured. Although it pained me to watch Dylan lose confidence I told myself that the fact he had experienced such feelings meant that, however severe his disability, he was capable of friendship.

Beyond School

Dylan July 13 002Although Dylan has grown into more comfortable relationships with his peer group there has never been another Christopher. When I let myself dream about Dylan’s future, however, I imagine a house with two or three young men, one of whom looks uncannily like him. I suspect I’ve spent the last four years looking for Christopher. ‘Has Dylan developed any special relationships?’ I ask teachers and care workers periodically. The answer is always the same: Not really.

Key workers and ‘adults who help’ continue to be Dylan’s main reference group. Perhaps that’s not so surprising: Dylan has enough self-awareness to recognise that he needs someone to help him with pretty much everything (self care, food preparation, accessing the community). He is probably smart to put his emotional energy into those people he knows have a role in helping him with these things. What does he have to gain from investing time in members of a peer group? They are both the problem (too noisy, unpredictable and annoying) and the competition (also vying for the attention of a ‘helping adult’).

While recognising that Dylan may not prioritise friendships with his peer group, communal living is an experience which I want him to have; this is particularly important I think given that Dylan has spent much of his life alone with me. At Ruby’s party I was reminded again of the opportunities for learning which social contact brings; a shared house, I told myself, will help Dylan develop emotional and social skills. And, based on the smile on Dylan’s face at Ruby’s party, he might even find it fun.

From time to time I’ve discussed with other parents the possibility of creating such a house; could we put our children together? The problem, of course, is that like-minded parents do not necessarily have well-matched children. In the absence of a peer group chosen by me or identified by Dylan his next move will have to be into an established group. Although I am anxious about this it is, of course, no different to class groups in school. If teachers can manage their classrooms so they are positive environments then surely an adult living community can aspire to the same goal?

Back to school

IMG_0193Except the influence which teachers can have on peer group relationships is, I know, limited. Although school years have been described as the happiest days of our lives there is increasing awareness that for many children this is not the case and that for some they are the most miserable. In education there is a growing focus on the experience of the child with attempts to access the ‘voice’ of young and disabled children through participatory research methods. Against this background, ‘children’s friendship’ is an increasingly popular focus for enquiry.

Although it’s not my specialist area I attended a seminar given by a colleague on this topic recently. Occasionally one of my undergraduate students opts to focus on friendship for a work placement project and I hoped that the seminar would give me ideas for methods and literature I might share. As it was a lunchtime seminar following a busy morning I was concentrating on my sandwich as much as the seminar initially. Soon, however, I noticed that the categorisation of children’s friendship, and its particular focus (at least for this age range) on play, were problematic if I made Dylan my reference point. For the next ten minutes I listened with Dylan in mind. This proved a revelation; the conceptualisation of ‘friendship’ simply did not work for him.

april-may 09 115While my colleague was describing her own and other research in the area I tried to imagine not just Dylan but other children on the autistic spectrum. It still wasn’t working. So I pushed to what might be considered the ‘mildest’ end of the spectrum; the place where the Aspie girls hang out. These are the girls who may ‘pass’ for years as neurotypical (sometimes a lifetime) because they are bright and articulate with a range of interests. There is increasing interest in these girls; because the diagnostic tool for autism has been primarily derived from, aimed at and applied to boys it is suggested that girls on the Asperger’s end of the spectrum tend to go unidentified. The growing research in the area suggests that for these girls the social experience of school is often miserable; awkward and on the edges, Aspie girls can find it difficult to interpret the environment or fit in. Some of the girls who experience bullying at school, it is suggested, may fall into this group of undiagnosed autistic.

My colleague started to describe one of the girls in her classroom study. She was on the margins. She wasn’t reporting friendships to my colleague using the same language or concepts as the other girls in the study nor was she mentioned by her classmates as a friend; she was, suggested my colleague, socially isolated. The power of educational research is that it is used to support and develop practice; practitioners build ideas from research into their work and promote them in educational environments. The assumption drawn from this particular study was that the isolated girl needed to be helped to develop more appropriate patterns of social interaction, i.e. to form ‘friendships’ with her peers.

The more I thought about the girl in the case study the more I was convinced that it wasn’t she who needed help but the other children in the class. Surely an inclusive environment would be one in which a group is able to support someone who chooses to inhabit the peripheral zone of a classroom? Shouldn’t we be encouraging children to understand that not everyone wants to be sociable and spend their time small talking with peers? Ought we not to be promoting a model of diversity in relation to social interaction in classrooms rather than a monolithic concept of friendship? This girl and Dylan, I realised, were not only not adequately described by this research, they were problematised by it. ‘Friendship’, it seemed, was another of those norms which feel so irrelevant to Dylan’s life and such an obstacle to his inclusion in society.

I hope that in my vignettes of Dylan’s interactions with some of his peers I have demonstrated that he is capable of forming meaningful relationships with others; while they might not follow the dominant model of friendship, they are no less valuable for that. As Dylan’s journey into communal living gets underway I will not doubt reflect further on the issue of relationships with others.

*Some names have been changed.

Acknowledgements

I am grateful to my colleague for inadvertently providing me with the opportunity to reflect on Dylan’s relationships with others and the conceptualisation of ‘friendship’. My colleague’s research was not concerned with autism but with other issues which I do not address in this post and from which I confess I attempted to divert attention during the latter part of the seminar. My left-field interjections were fielded gracefully :-)

For information about issues related to ‘Aspie Girls’ there is no better resource than Cynthia Kim’s excellent blog Musings of an Aspie: http://musingsofanaspie.com/about/

Images:

The photos of Dylan and Ella were taken on the banks of the canal at Sheffield and Chesterfield. The pictures of Dylan as an adult were taken at the Under the Stars Disco. The children’s party photos were taken at Dylan’s 6th birthday at a soft play centre. The classroom photo is of a younger me working with a group of primary school children on a writing project. The shadow photo is by (and of) me.

Autism And War In Fiction: The Boy From Aleppo Who Painted The War by Sumia Sukkar

AleppoeyewearIn a recent post I reflected on the implications of war for autistic children and their families. In particular, I wondered why media reports from warzones never seem to include footage of or reference to autistic children: Where have the autistic children and adults gone? I asked.

In this post I review a BBC Radio 4 production of The Boy From Aleppo Who Painted The War by Sumia Sukkar. The radio drama (broadcast on 8/11/2014) is an adaptation of Sukkar’s debut novel and focuses on the experiences of a boy with Asperger’s Syndrome during the war in Syria. Links to the novel and radio production can be found at the end of the post.

Random and ordinary

AleppoeyewearThere is, I have noted previously, an absence of representations of autism in the arts. Just as women and people of colour have argued that fiction should reflect their lives, so people with an Autistic Spectrum Condition should be able to recognise themselves in literature. While Mark Haddon’s stand-out novel The Curious Incident Of The Dog In The Night raised the profile of autism, there is a need for more, and more ordinary, roles in contemporary fiction for autistic people and their carers (I review a novel which includes multiple representations of autism here).

The subject of war may seem extraordinary but it is ordinary lives which it transforms, as randomly and suddenly as an autism diagnosis. Sukkar is to be applauded for recognising that some of the ordinary children caught in war will bring to it the unique insight of autism. As well as focusing on the challenges which conflict presents, The Boy From Aleppo Who Painted The War explores the possibility that autistic perspectives may help us to new truths. If the scope for suffering for an autistic child during war is great, Sukkar suggests, the capacity for resilience and survival may be great also.

The bunker

AleppoeyewearThe focus of Sukkar’s novel is Adam, a teenage boy with Asperger’s Syndrome who lives with his middle class family in suburban Aleppo. Adam’s relationships with his father, brothers Tariq and Khalid and sister Yasmine are drawn with intimacy and affection; the family is close and their love for Adam evident. This context is important; the war will take a cruel toll on Adam’s family but Adam will receive the support from it he needs to survive.

Although no longer alive, Adam’s mother is a constant presence in the narrative. When Adam’s father, Baba, shows Adam a secret door to a basement room, Adam is surprised to find his own paintings on the walls. Adam’s mother had decorated the makeshift bunker with Adam’s paintings in the hope they would help her son during the disruption she knew war would bring. Baba tells Adam that his mother put the paintings on the wall ‘to keep them safe’. If Adam is ever alone or in danger, he tells his son, he must lock himself in the room: he too will be safe there. This room, I realised as I listened, is a version of my dad’s coalmine in my recent post on autism and war.

One of the themes of The Boy From Aleppo Who Painted The War is that instead of being a source of support, during war the community becomes a threat. Adam receives some protection from the conflict because he is part of a secure and loving family. Tariq’s death in the early days of the uprising, however, has a profound impact on the family, most obviously on Baba who suffers a collapse. Yasmine, who had the chance to leave Aleppo with her boyfriend but opted to remain with her family, now takes over the care of Adam. Adam observes that his mother understood he was different but ‘always said it didn’t matter'; this acceptance now informs the way Yasmine cares for her brother.

Voices

AleppoeyewearAlthough Sukkar writes powerfully about the impact of war on Adam’s family she doesn’t have direct experience of autism herself; in an interview For BBC Radio 4s Front Row (broadcast 7/11/2014) she identified a friend’s child as the catalyst for Adam and acknowledged that her novel had started with the war rather than with autism. Sukkar has, however, done her research; she is aware of the importance of routine to autistic children, for example, and gives preoccupations to Adam which parents will recognise. Sukkar also understands that the disruption of these routines through war will challenge Adam, creating the narrative conflict she needs.

Sukkar is often convincing: ‘Simpson Time’, for example, captures Adam’s interest in The Simpsons and illustrates the way routines are used by Adam to structure his days. While not unconvincing, other descriptions of Adam sometimes lack freshness (a ritual avoidance of stepping on tiles is a bit tired) or feel composite: Adam has special interests in time, mathematical calculations, dictionary definitions, food and cartoons. What I find more troubling, however, are inconsistencies in Adam’s narration which switches between a reflective, a naïve and an explanatory voice.

It is Adam’s ‘telling’ voice I find most problematic. Adam’s awareness of his own difficulties sometimes seem implausible; he speaks lines such as ‘I hate change’ , ‘This is why I hate change’ and ‘that’s why I don’t like touching people’. While I found the impact on Adam of disruption to The Simpsons convincing, this was spoiled by him telling me about the impact. As other characters don’t explain themselves I assume Sukkar felt the need to give Adam such lines in order to interpret his autism for the reader. ‘Show don’t tell’ may be clichéd advice but it is good advice; having characters explain themselves is rarely good and this holds true even if they are autistic. Sukkar could perhaps have trusted her readers more.

Ears and eyes

AleppoeyewearThere is, however, a dimension of autism which Sukkar depicts well: The Boy From Aleppo Who Painted The War is a rich account of synaesthesia and the sensory experience of an autistic child. References to the senses are scattered through the piece. Colourful vegetables on a plate are ‘a bowl of emotions’. When Adam eats paint because there is no food he tells Baba it ‘tastes really green’. The sound of protest in the streets is the noise of wolves. Caught in an explosion, Adam feels ‘hot black smoke’ in his body. Oxygen is something that, if you look closely, you can see.

Adam thinks and feels in colour. When his brother Tariq is killed in the uprising Adam says that it has turned Yasmine ‘just grey – all the time grey’. Later, when Khalid is injured, Adam reflects: ‘everything is grey. There is no more colour in Aleppo. We are all grey’. One day Adam finds an ear, which he mistakes for a seashell, in the street; afterwards he is convinced an ear is following him, something which brought to mind my own son’s anxiety about ears. Adam also shares with Dylan a love of water; he dives underwater ‘to hide’ and stays under until his lungs ‘are bursting’. Water, Adam tells us, is his friend:

the water against my skin understands me more than people ever do.

Adam’s sensitivity to touch and sound is also demonstrated through spinning, a behaviour linked to proprioception and balance which triggers pleasurable feelings. Dylan spins too; he has particular times of day when he likes me to whirl him around. One of the most dramatic sequences in the radio production of The Boy From Aleppo Who Painted The War is an encounter with soldiers while Adam is spinning in the street during a trip out with his sister to find food. What follows is harrowing; Yasmine is taken by the soldiers, who beat and mock Adam before leaving him alone in Aleppo. Although Adam is subsequently reunited with Khalid and Baba, Yasmine doesn’t return.

Blood and hair

AleppoeyewearPainting is the only thing Adam has ‘ever really understood’ and now he copes with Yasmine’s absence by painting. When he runs out of art supplies Adam cuts hairs from the head of a body to make a paintbrush and bottles spilled-blood for paint. Hogarth, Adam says, used red for blood; why can’t he use blood for red? The pictures Adam paints on stones at the side of the road are not pretty; ‘they don’t lie’, he says. Adam’s record of the war becomes a truth-telling, a way of knowing forged from and about the blood and hair of the casualties of war. Adam, we are told, is the boy ‘who painted the war so that everyone can see.’

‘They think I paint the same picture again and again’ Adam says but – like eyes – ‘no two pictures are the same’. There has been much speculation about the tendency of autistic children and adults to avoid eye contact. My observation of my son, Dylan, is that although his eye gaze doesn’t linger he notices everything (including eyes) in fine detail. In The Boy from Aleppo Who Painted The War Adam also has an intimate knowledge of the eyes of others, information which has particular importance to him.

Adam compares himself to the pupil of an eye and his father to the white, likening his siblings to flecks of colour: Khalid is orange, Yasmine is ruby and Tariq is green. The image is striking; eyes are not only a means of witness but a way in which members of a family recognise each other. The image also places Adam, symbolically, at the centre of the family. This unique way of seeing enables Adam to produce his extraordinary paintings of the war. It will also help him to find his sister; later, fleeing Aleppo with Khalid and Baba, Adam is drawn by the eyes of a bald-headed woman at the side of the Damascus road: ‘like rubies’, Adam exclaims.

Extraordinary miracles

AleppoeyewearA series of miracles brings a lightness and close to the narrative. I found these slightly unsatisfactory. I wasn’t convinced by the sudden phone call from an aunt which triggers the family’s 200 mile pilgrimage to Damascus. Nor do I believe the way Adam takes charge of guiding the family. Or the sudden appearance of a bus. The discovery of Yasmine is a happy chance but her recovery rather too miraculous for a victim of kidnap and (implied) rape. Although the family has suffered terrible loss and tragedy it ends in the light: ” I can’t stop smiling”, Adam says.

While I don’t mind a bit of luck and miracle, I would have preferred more shadows around the light. Perhaps for purposes of the radio adaptation these events were more telescoped than in the novel; the fact that I intend to buy it and find out is hopefully recommendation enough. And maybe long shadows are drawn in Adam’s closing reflection that ‘all the tears in my body have dried up. I can’t think of anything that will make me cry again’.

Sukkar describes the novel as having started with the war rather than with autism. It seems to me that The Boy From Aleppo Who Painted The War ends with war too. By the close of the radio dramatisation I had almost forgotten the link with autism. There are powerful descriptions of surviving war; a scene where Adam and Khalid cook Tariq’s poetry books in an attempt to extract nutrients from their leather covers for example. Sukkar writes most insightfully, however, about women and war; the depiction of Yasmine’s role in the family’s survival (‘our wings’ as Adam calls her) is as compelling a narrative, for me, as the story of Adam.

References and Links:

Fiona McAlpine (Director) The Boy From Aleppo Who Painted The War by Sumia Sukkar (Radio 4 Drama of the Week, 8/11/2014)

http://www.bbc.co.uk/programmes/b04nqpd0

And here’s a link to the interview with Sumia Sukkar (Radio 4 Front Row, 7/11/2014)

http://www.bbc.co.uk/programmes/b04n695f

Sumia Sukkar, The Boy From Aleppo Who Painted The War (Eyewear Publications, 2013).

Below is a link to the publisher’s website. Eyewear is a small independent press so please consider purchasing directly from them if you decide to order this book.

http://www.eyewearpublishing.com/http://

Zen And The Art Of Caring: the swept path

wet leaf fall 004The Anglo-Saxon name for an October moon isn’t Falling Leaf Moon without reason; for the last few weeks I’ve been meaning to sweep my front path. Dylan will slip on those leaves, I’ve kept telling myself.

Since Dylan started going to and from school on local authority transport at the age of five he has had the habit of hurtling at high speed into the house on his return. Without stopping to look or check for potential obstacles along the route he sprints like a German ICE or Japanese Bullet train to his destination. This habit has stayed with Dylan through 19 years of schooling and four different houses, three different schools and dozens of different drivers and escorts.

Although this behaviour may not appear unduly worrying it can be problematic. There are pedestrians, for example, who may be knocked to the ground by whirlwind Dilly. As the behaviour continues year round, unchecked by weather conditions, there is the danger that Dylan could fall badly in icy weather (or wet autumn leaves). And there is the possibility that in Dylan’s 50-250 yard sprint (depending on where the minibus has managed to park) he will encounter something to spook him – a dog say – and throw him catastrophically off his stride and into passing traffic. For in this brief time, Dylan is beyond any supervision or control; all a carer can do is stand back and watch, fingers crossed.

While the home sprint may be relatively low-risk, I worked with Dylan’s teachers and escorts periodically to try and re-shape the behaviour. We tried rebus symbols, rewards and changes to the drop-off routine but nothing made a difference. Eventually I gave up, thinking that perhaps once Dylan left school it would no longer be an issue, especially as the behaviour seemed to apply only to local authority transport (Dylan walks perfectly calmly into the house from cars and public transport). The behaviour appears, however, to be deeply embedded; Dylan has continued to sprint into the house from the minibus which now brings him home from his adult day centre.

wet leaf fall 005I must sweep these leaves up, I said to Dylan as I locked the front door of the house one morning last week: I’ll do it tonight. I put Dylan on his minibus and raced to work. I am always rushing to and from work. I have perfected the art of being back in time for Dylan’s bus while wringing every last minute from the working day; I know the shortest time it takes from desk to front door and I almost always bank on it. It’s a vital calculation; get it wrong and the consequences are horrible. Dylan would not understand, if I wasn’t home, why he couldn’t get off the minibus. Having to wait for me to arrive would not only distress Dylan but would have knock-on effects on other service users and families.

When Dylan was at school I was aware that local authority transport was only allowed to wait for an absent parent for so long before taking the uncollected child to what I always thought of as ‘the pound’. While I never had had to retrieve Dylan from such a place, I did slip up a few times. Usually I was stuck in traffic within striking distance of home; over a 15 year period, given that I’m a single working parent, that’s not bad. I always cut it fine though and one thing my calculations never seem to adjust for is the sweeping of paths: I didn’t, of course, get home in time to do this last week.

The swept path

wet leaf fall 001So when I got Dylan off the bus that night I hollered slow down, you’ll slip as he raced towards the house. The bus had had to park further away than usual that night due to workmen; as I had walked up the road to get Dylan I told them they might want to stand back a bit as in a moment my big boy would come tearing past at high speed – which is exactly what happened, with me in hot pursuit.

I don’t know what I expected to gain by chasing after Dylan like that. He is nearly 21 and in his physical prime. I wasn’t going to catch him. Even if I kept him within ear shot he wasn’t going to listen to my exhortation to walk. So haring after him, I now realise, was pointless and silly. But that is what I did and yes, you’ve guessed: I fell on the unswept path. And I went with such a bang and a crack on those wet leaves I lay dazed on the ground wondering what on earth I had done and what I would do next. When I limped into the house Dylan had his arms clamped around his ears, a sign that he was distressed. So instead of letting myself cry or peel off my clothes to inspect the damage I said ‘mummy fell’ then maintained our usual routine of reading and signing Dylan’s link file entry about his day. I would deal with the blood and bruises later.

wet leaf fall 008Happily they turned out not to be so bad; a few days later and I am already mending. I could have done without that fall though; it has made caring for Dylan and myself, as well as working and doing things like driving, slow and difficult. The first night, struggling to cook, shave Dylan or type, I chided myself for not keeping a swept path. I need a more zen approach to caring, I told myself; taking a few moments for small tasks, like clearing leaves, could make a difference to my well-being.

wet leaf fall 009So the next day I swept my path. It only took ten minutes but from that short time I took something valuable. And while I was sweeping I remembered a poem about a swept path. The poem, by Helen Farish, is not about autism; the narrator is learning to care for lavender, rather than for a child. The process Farish describes, however, and its impact on her sense of self, resonates with my experience in many ways. Farish reminds me to celebrate myself; this week the achievement I am most proud of is, indeed, my swept front path.

Programme
Helen Farish

She loves the radio, the freedom it gives
to listen out the back as she’s passing to and fro
or sitting in the half-house half-garden room

on a midsummer’s Sunday evening
listening to a three-hour programme on the monsoon,
and the front door is open and the back,

and every now and then the setting light
coming past the lavender she’s recently started caring for
and the honeysuckle she never used to notice nor those roses

hidden till she chopped back the buddleia – the light
coming past the flowering jasmine and the hanging basket
she’s so pleased with stops her,

makes her see how much of her life
has been lived in this house,
that she’s become who she is here

and what she will remember of these years is not
the times when living alone seemed a problem to solve
but the peace:

looking at a house she has done her best in,
loving small successes, the hanging basket, the picture in the half-
house half-garden room, that repotted plant,

and her larger successes – allowing herself the pleasure
of a three-hour programme on the monsoon
sorting through a box of postcards with a green glass of gin,

wet leaf fall 011seeing all those places she’s been to: but her journey
to this programme, her swept front path, this is
the one she’s most proud of.

Reference:

Helen Farish, ‘Programme’ in Intimates (Cape, 2005)