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:

The Frog Prince: autism, poetry and transformation

batdetectorIn a recent post reflecting on the causes of autism I referred to ‘magical thinking’.  By this I mean explanations for disability which aren’t based on scientific rationale or evidence but which acquire narrative status across a cultural group or society. In this post I present four poems which represent a mother’s changing view of autism in the years immediately following diagnosis. The post opens with a poem in which I try to make sense of autism through magical thinking. It then traces critical shifts in my understanding through poems written within the first five years of Dylan’s diagnosis and published in my collection, The Bat Detector.

Responding to my son’s autism through poetry has, I believe, shaped my thinking about disability. Writing a poem is a journey and in the course of it I frequently discover things I wasn’t previously aware of.  Furthermore the act of writing is transformative; I am changed not just by what I have written but through the process of writing itself. In this sense poetry can be considered as epistemology (i.e. a ‘way of knowing’) as well as a form governed by aesthetic and other principles.

Poetry is not, of course, my only way of knowing but it is important to me as a creative approach to thinking about autism. Partly this is because poetry allows me to adopt other voices and perspectives, something I have referred to in a previous post as ‘ethnographic practice’. This can be particularly illuminating as a way of knowing about parenting and disability. In this, of course, it is not unique; researchers also engage with other perspectives. However, poetry also allows us to engage with affective (emotional) material and gives us permission to explore our magical as well as scientific thinking. This post considers the contribution which such an epistemological approach can make to our understanding of autism.

*

moonIn the poem below I consider magical thinking as an explanation for autism through reference to an English folk belief that boys born on a moonless Monday become ‘idiot children’ (as they were known in the 19th century).  Dylan was born by the sea and that landscape makes an appearance in the poem. In the first section I use female mythology of the moon in the mother’s attempt to gauge her fertility by lunar cycles.  In the second section of the  poem I refer to the baby missing its opportunity to be born while the moon is visible in the sky (by the time Dylan put in an appearance it had gone).

The third and fourth sections of the poem refer to a trip to France the year after Dylan was born (see also this post).  Dylan was 15 months old and beginning to show symptoms of autism though we didn’t realise this at the time. I remember joking to my husband about the full moon shining on Dylan’s cot at night and us laughing about Dylan emptying the cupboards in the holiday home and arranging the pots. We had no idea of the significance of this. The day at Carnac (a megalithic site aligned with the moon) became legendary in our family history because of the severity of Dylan’s crying that day and our inability to calm him. In the final section of the poem I reflect that the lives of mother and son are somehow bound up with and controlled by the moon.

Moonstruck

Mother know’d ’twas no moon, for she asked another woman that had an almanac, as she did whenever a boy was born to her, because of the saying, ‘No moon, no man’ which made her afeard every man-child she had…  Thomas Hardy, The Return of the Native

i.  Moon Dates

I timed my eggs by the moon,
knew that when it bellied in the sky
my linings would break to maddening blood.

There must have been fog over the sea that June –
something to obscure that bony annulet from my view,
to wrench from my miscounting on it

an alternative computation.
I converted lunations to trimesters,
waited, patiently, for a March moon.

ii.  No-Moon Child

Waters lapping at toe and fist, cast out on a hawser,
syllables form, echoing in the stabbing dark:
I will be the moonstruck man you never wanted,

 the boy feared beyond imagined daughters.
The sea heaved, spilling spring tide

from a silver moon, shivering a swatch of light

to fill the emptiness, the silence of my due night.
Tick, tick. Its fullness splintered back to blackness
and the month stitched a no-moon Monday to his cry.

iii.   Afeard

As I set the child to sleep that night in a white cot
beneath the eaves of a manor house in France
I shuddered at the sight of moon

pooling full through un-curtained glass,
said that I had read this could send a person mad.
What lunacies beamed from that stark land

into his dreaming no-moon skull?
What fingers of leaching light softly thread
around my shuttered sleep into his exposed head?

iv.   No Man

The megaliths at Carnac point to the moon.
How he cried that day at those lunate bones
divining time from the sky’s light –

gouged the terrible sight of those stone fingers
(their silent, commanding point) from his eyes,
then emptied cupboards of annular things,

spread cups and saucers, pans and bowls in complex order
across the floor, moved his planets inch by inch into a
mooncalf heaven, mapped his constellation from these stars.

v.   Moon Life

And now, wordless, inhabiting a world as strange
and far away as moon he greets its mad latescence
with howling wails and wakefulness,

meets the coldness of its hoary stare through fingers
spread across the glass shredding silver,
minting slivers of no-moon in the sky.

His life and mine still timed by moon he lives
within the darkened days between its blooming,
breathes in space between its lunatic albescence.

*

Moonstruck is an example of magical thinking about autism in that it locates cause in folk mythology and nature. The philosophy of the poem is that the mother and child are victims of something which was inevitable and for which they were marked out by a force unknown and larger than them.  The mother and child have no power, or ‘agency’, in this process; they will not resist what has happened or attempt any change and, in this respect, there is an acceptance of the autism. However, this is not a positive acceptance; the actors are passive onlookers, constructed as victims.

In the following poem, by contrast, the mother-narrator does not accept her child’s autism. Although the representation of her son is loving, autism is depicted as something ‘other’ to him; it is an alien force which has taken over the child’s body and stolen the son from the mother.  There is no acceptance of autism – rather the mother is resistant to the idea that autism could be part of her child.  However, it is magical resistance she engages in rather than scientific challenge; the rescue narrative she dreams for her son is as romantic as the explanation she offers for his autism. A section of the poem is presented below.

Breath

 ii

When my son was less than two years old –
just before his autism was diagnosed
and my whole world fell apart as the child
I thought he was (and would become)
slipped suddenly away from me,
like the death of someone known, familiar –
I had a dream (or vision) in the night.
As I slept, became aware of someone
watching me – woke to see at the entrance
of my attic room, standing at the top of the stairs,
a blond-haired boy regarding me silently,
wise and sad-eyed. I knew it was my son –
though older (maybe seven or eight).
Then a voice – not his, but in my head,
like Aslan’s:  Wait, be patient, it said,
I have to go away but will come back
to you one day
.  I sat up straight –

anxious, wanting to hold on,
not let him slip away, be gone.
Then a flicker of breath against
my cheek as he disappeared.

That was years ago:  my son is seven now.
Sometimes I turn – try to catch
him at the top of the attic stairs
looking the way I dreamed he would –
try to conjure from his absent eyes
an answer to the patient watch
I’ve kept for his delivery back.

*

Dylan, seven

Dylan, seven

In the opening section of Breath (not included here) the mother-narrator reflects on her previous loss of a daughter through stillbirth. Breath, then, becomes a poem of sudden loss in which children are stolen away; these losses take place overnight when there is permeability between the living and spirit worlds and souls can cross over. In this sense the loss of the son to autism is constructed as an ‘othering’. The absent-eyed child is an imposter who has taken the place of the lost (non-autistic) child who the mother-narrator prefers.  The non-autistic child is constructed as superior not just to the imposter but to the mother; in this poem, it is the lost child who takes the explanatory narrative (‘I have to go away’) and who is charged with responsibility for managing his own return. The mother simply has to wait. This abnegation of maternal responsibility is part of a construction of the mother as passive victim who has to endure magical fate (Moonstruck) and mystical crime (Breath).

all that's left 002

Dylan in his helmet

In the next poem, instead of magical thinking the mother embraces scientific explanation. The poem uses the language and vocabulary of genetics. Through this, the mother  begins to construct herself as part of her son’s autism. This is not a positive involvement however – rather she fears her  potential responsibility for the wider family and future generations.  The poem explores fertility and reproduction and I relished the opportunity to write about menstruation, ovaries and eggs. However in other respects the poem was difficult for me to write. Reference is made to the mother’s new daughter as well as to the daughter who died; this living daughter is seen as the only ‘normal’ child, with both the dead daughter and the autistic son described as carriers of genetic ‘abnormality’. In this, then,  the mother continues to privilege normalcy over diversity.

I wanted to try and capture the reality of being a mother to an autistic toddler – the days when it’s a struggle to keep going until the release of sleep. While I was writing the poem I forced myself to be very detached about Dylan. At the time he had a policeman’s helmet (not a real one) which he insisted on wearing constantly and which makes an appearance in the poem. I don’t know who bought it for Dylan but I’m pretty sure I wouldn’t have. I came to really dislike that helmet.

Monster

The morning brings stench of broken linings,
blood like a butcher’s shop, thick and liver-brown.
Menstruating again – shedding another
of the last surviving eggs
from the store I was born with.

A geneticist assured me once it was all
a bit of a lottery; told me that in every
woman’s cargo of eggs there are some
that are bad – chance statistics of
abnormality or spontaneous abortion.

One of my long-shot eggs grew hardly
human. Today he is a monster on a train,
wearing a helmet. He emits strange shrieks,
makes bizarre grimaces with his face.
Except for providing food

I cannot connect with him today.
This defect cannot be detected
or tracked back, with certainty,
to the egg. But I know the possibilities –
the endless varieties of bad ovum.

Recall how, years ago, the geneticist
talked me through my still-born
daughter’s post-mortem.  The shock of it:
sheer extent of things gone wrong –
impossible – inside her.

I’d held her: committed her to memory,
through unstoppable tears.  She’s beautiful,
she’s so perfect
I’d said. I remember

how the doctor had touched her left foot,
showed me the odd splay of her toes –

said it sometimes indicated things gone wrong.
Later, the confirmation of ugly words:
fixed flexion deformities, syndactyly,
webbing, micrognathia.  It was the egg,
the geneticist said, that failed to divide:

an extra set of chromosomes –
Triploidy Karyotype XXX.
The only thing normal
reported about her: female genitalia
and reproductive system intact.

Now I have another daughter: she is
my bright and bouncing perfect egg.
Today, mourning my losses, feeling
ache and cramp of blood (the odds
on my eggs being good lengthening)

I fear the gift I have bequeathed:
wonder what the clutch of eggs
inside her holds, whether time-bombs
are already ticking, waiting to release
their hair-sprung triggers and go off.

*

Although the language of the post-mortem report is monstrous the mother finds her daughter ‘beautiful’ and ‘perfect’.  While she cannot connect with the monster on a train we are (twice) told that this is her experience ‘today’; the implication is that, as with ‘ordinary’ parenting, there are good days too.  Here, then, there are chinks of light: the mother finds the disabled child beautiful and claims disability as part of her life history.

dailymail.co.ukThe final poem in this post, Frog Prince, captures further change in the mother’s views as the narrator reflects back on herself over a three year period. The trigger for these reflections is the appearance of a frog in the garden. The poem recounts a real incident which offered a way for me to address perceptions of disability; through the narrative of the tadpoles I explore feelings of denial, responsibility and guilt, as well as raising the issue of the ‘invisibility’ of autism and its emotional impact on parents.  By the end of the poem the mother realises she has moved beyond acceptance of autism to celebration of difference: ‘I no longer wish for transformation’, she reflects, ‘would not plant the kiss’.

Frog Prince

A frog visited me this morning –
sat still as brown stone in the rockery,
rain falling on her pointed head.
I assumed, at first, this frog was there by chance,
her appearance not to do with me.
But she bulked big as a fist until I had to admit
it was probably her third summer,
could date her hatching to the year we’d stashed
a greedy harvest upon our bathroom windowsill.

As the spawn crammed in the plastic boxes, jars and pots
grew inky dense, we’d looked on aghast
at the wriggle and bud of tadpoles
sprouting extra limbs, additional heads –
stood by while some grew monstrously
as they fed on the weakened, selected the grotesque.
Witness and accused in this fishy metamorphosis
I’d closed the bathroom door on the alchemy,
tried to ignore my part in it.

But then, the night the comet came,
I’d rushed to wish into transfigured sky  –
one more try for my miracle,
for something to unravel and re-thread
the tangled wires in my son’s head,
for a word, a gesture, a touch of human love
to issue from his perfect lips, his gilded arms.
But tadpole-skulled, head full of frogs,
I’d  imagined, instead, this simplicity –

that my son had grown two heads, no legs,
been eyeless, deaf – that some strange growth,
or absence, had marked him out, made difference clear.
And in this horror I’d turned them out – stumbled in
to the stagger and slosh of stairs, the weeping garden,
stood beneath a tail of light, frogs falling from me,
their mutant bodies sliding through guilty hands.
Next day I watched birds come at dawn,
their derrick heads bobbing, clean-picking the lawn.

The escaped frog that visited today
brought me in a leap of time to realise
that, since her freedom, things were changed.
The difference this – that I no longer wish
for transformation, would not plant the kiss.

*

wildlife-imaging.co.ukLooking back at these four poems years later I can detect the shifts in thinking which I perhaps wasn’t conscious of at the time but which poetry helped me to explore. Mapping models of thinking about disability onto these poems, you could say that the mother moves from ‘primitive’  beliefs about autism (Moonstruck and Breath) through a Medical Model approach (Monster) to a position more akin to that of Neurodiversity (Frog Prince). While parents may not find it helpful, in the aftermath of diagnosis, to think in terms of philosophical models, applying such thinking retrospectively can be illuminating. The practice of writing creates a reflective space which allows us to record our journey through difficult terrain, thus supporting a process of discovery and transformation.

Reference:

Elizabeth Barrett (2005) The Bat Detector, Wrecking Ball Press
Thomas Hardy (1878) The Return of the Native, Penguin Books

Source of images of frog, tadpoles and moon unknown but appreciated.

‘Autisms’ And Magical Thinking: reflections on cause

hodsock 026The response to an autism diagnosis has changed significantly over the last couple of decades.  When my son was diagnosed 18 years ago the focus was on cause and cure (or ‘intervention’ as it was termed).  Nowadays, the concern tends to be with acceptance and advocacy. While this shift in emphasis can’t alter the emotional impact of diagnosis it can remove the feeling that your child is a problem to be fixed.

I don’t often think about the reasons for my son’s autism anymore and though I still try new things I no longer search for ‘cures’ in the way I once did. Instead, I focus my energy on trying to understand the world from Dylan’s perspective well enough to advocate for him when he needs me to. In this I am in general alignment with the social model of disability which argues that we are better engaged in championing social change than in looking for the cause of (and, by implication, the cure for) autism. From this perspective, a medical model of autism is unhelpful. Medical research, it is argued, is conducted within a deficit framework which problematises the autistic person and privileges ‘normalcy’.  This may (with exceptions) be the case, but  I continue to take an interest in it.  How could I not when I have such a stake in the data?

Ear Infection

I am not saying that this caused it.
It may have been the secret genes
of his tight-lipped father
(another skeleton son in an expensive cupboard school)
or the vaccine-loaded needle the GP pushed into his legs;
it may have been the 72 hours I laboured,
offering him the O-Ring world slow centimetre by centimetre.
I cannot be absolutely sure of cause.
But when I knew –  had a name for all that was not right –
it was those three days, three nights merging that I thought about.

Alone, brimming with a second child,
I was filling sticky syringes with banana medicine,
counting the headscan out (103, 104…),
fanning his hot red face, laying on lukewarm cloths.
This small child with the legs he had only just found,
swaying like a drunk, stumbling across hard tiles
to where I stood, holding desperately onto my life
(solid, dependable objects: teabag, tap, kettle). Turned at his cry,
scooped that small body up to live those days by me:
no fluid, no food, no sleep. Until, on the third day, it was over.

Neither of us thought much about it after
when he didn’t speak. Didn’t puzzle
when he stopped showing us the pictures in his books,
preferring to sort things out and line them up –
yellows, blues, reds.
Didn’t connect that by the time his sister was born
he could barely point or wave.
But later, swallowing the bitter pill of diagnosis,
I took the sickly forever lozenge
remembering those three jumbled days and nights.

I am not saying this caused it
but tonight I am gripped numb; unable to hold
my 15 month daughter  – her burning body familiar,
the high whine crazing my scalp – as she refuses,
the way her brother did, dose after dose.
It is the same pain I weep with, the same exhaustion
of the same three nights without sleep –
their lives same, fusing, and the difference me:
the fear re-wiring my mother love,
unwomanning my hands, arms, head. 

 

The poem was my first attempt at making sense of Dylan’s autism.  I must have written it within a year of his diagnosis as it was included, in all its rawness, in my first poetry collection. Reading it now I’m struck by what I left out of the poem.  I’ll return to that later – first though, some medical research.

Autism Clusters: seizures, infections and psychiatry

The link at the end of this post is to a research paper on comorbidity clusters in autism.  The study used health records of patients over 15 years of age with a diagnosis of autistic spectrum disorder to investigate the co-occurrence of other medical conditions with autism. Based on their study the authors claim to have identified three distinct clusters of autism within the population:  a group of patients  whose symptoms are associated with seizure disorders (such as epilepsy); a group who have increased rates of bowel, infectious ear and respiratory symptoms; and a third group of children who have higher levels of psychiatric disorders (including ADHD, depression and schizophrenia).

The conceptualisation of autism as a single ‘spectrum’ condition is sometimes considered unhelpful: ‘when you’ve met one autistic person, you’ve met one autistic person’ is frequently quoted as a proviso to the spectrum.  Isaac Kohane, one of the authors of the cluster study, claims that their research shows that rather than there being one autism ‘there are several autisms, each with its own specific course.’  (reported in Miller, 2013). Furthermore, the data suggest that distinct contributory factors may be involved in these ‘autisms’ with some linked to genetic and some to environmental factors.

Miller’s report on the study suggests that ‘simple patterns can emerge from even the most chaotic, complex data’. It is certainly true that there is elegance and simplicity in the three clusters described by the study. Such patterns are compelling and can be seductive, but to what extent can they impose some order on the chaos and confusion of a poem?

Making Simple:   Dylan and Cluster Two

Dylan hasn’t developed epilepsy or other seizure disorders (group one in the cluster study) and he doesn’t have a diagnosis of ADHD or present with any of the psychiatric disorders associated with group three.  He could, however, be placed in the second research sub-group which is characterised  by multisystem disorders such as gastrointestinal and auditory infections (Doshi-Valez, 2013).

hodsock 028My poem Ear Infection describes such a multisystem disorder and suggests it as a possible cause of Dylan’s autism. I’ve met other parents who have mentioned ear infection and/or abnormally high temperature as something which they particularly remember from their child’s pre-diagnosis days. While many babies suffer from such infections, these parents report particularly dramatic or acute incidents.  As well as the ear infection referred to in my poem there was another event on a day which my husband and I named ‘Black Monday’. It happened soon after the three day ear infection (Dylan was around 14 months old) and appeared to again involve Dylan’s ears/respiratory system. He had a temperature and was inconsolable with crying jags which lasted for 24 hours.  On both these occasions the extent of the infections, and their grip on Dylan, seemed to be out of the ordinary.

Although I was a new mother I was becoming used to such drama. When Dylan was just four months old I had lived through an even scarier ‘multisystem disorder’.  Up to that point, apart from being colicky, my baby had been well. At four months old I took Dylan to the GP for his vaccine shots for Polio and Hib (a strain of meningitis). The next day my baby wouldn’t feed; he was listless, floppy and running a temperature. Later that day he developed purple bruising on his legs. I delayed a couple of hours not realising the significance – by the end of the day, though, with Dylan clearly not well, I took him to the GP.   Dylan was admitted to hospital immediately where he was treated for meningococcal septicaemia.

I don’t understand why Dylan’s meningitis didn’t make it into the poem.  For whatever reason, when I wrote the poem, it was the ear infection which seemed more important. Now, if someone asks me what the cause of Dylan’s autism is I am far more likely to say ‘maybe childhood meningitis’.  It interests me how we have short and longer-term ways of making sense of our lives and experiences. I’m not sure our retrospective meaning-making is necessarily any more reliable than our immediate response to an event, except that it has had longer to be tested.

As Dylan has grown up it has become clear that he has a significant learning disability and a range of difficulties with communication which involve the production of speech as much as (perhaps more than) the desire to communicate.  The pattern of Dylan’s disability, particularly in relation to his language and learning disability, now seems to me to be characteristic of the damage which can occur to the brain during meningitis. My longer-term view that Dylan’s autism arises from the meningitis episode is largely based on my observations of the way in which his disability affects him (something which was not clear at four months or even four years old).

While I don’t mention meningitis in my poem I do include a ‘vaccine-loaded needle’. This doesn’t refer only to the Hib shot, however.  I can almost hear you (or perhaps myself) exclaim: You mean you let him have more?  I did assume, initially, that it was the Hib shot that caused Dylan’s meningitis. The investigations at the time, however,  concluded that the strain of meningitis which Dylan contracted was different to the strain which the Hib vaccine was used against. There was no possibility that the meningitis could have been triggered by the Hib vaccine I was informed; it was simply coincidence. I was told this repeatedly by medical professionals and, in the end, their  reassurance was enough for me to let Dylan have his MMR vaccine the following year.

The ear infection and ‘Black Monday’  both happened in the aftermath of the MMR shot.  I had a baby, it seemed, who did not cope well with vaccines. Even the GP, this time, advised caution; best not continue with the top-up shots, he said – at least Dylan will have got some protection. So the vaccine programme was discontinued. Later that year, after Dylan was diagnosed autistic, I claimed for vaccine damage but was unsuccessful on the grounds that the strains of meningitis had been different and there was no evidence that MMR was involved.

I was left with a lot of questions. Could the attack on Dylan’s system of the ear infection, ‘Black Monday’ or meningococcal septicaemia have caused Dylan’s learning disability, language disorder and autistic behaviour?  And if so were the effects cumulative or from just one of those infections? Were the infections triggered by childhood vaccines? And if so, was there something which made Dylan particularly vulnerable? Or were the infections entirely unrelated to Dylan’s autism –  just more crap cards from chance’s random hand?

Looking back at my poem I am struck by its uncertainty. The mother doesn’t know what the relationship between genetic and environmental factors might be and she acknowledges that either or both could be involved. What she does know, though, is how vulnerable a small child can be and how helpless a parent feels when things go wrong.

Making Difficulties: the Complexity of Cause

I am not anti-vaccine as a result of Dylan’s experience;  I recognise their importance to public health. However, I now believe there may be some babies whose immune systems are not sufficiently developed, or which are in some way compromised, and who may therefore be particularly vulnerable to early vaccination. For this reason, I didn’t have my daughter vaccinated until I judged the risk of disease outweighed the possible danger from an immature immune system.

hodsock 027Once Dylan’s vaccines stopped he developed an astounding physical robustness and since starting school has rarely been ill. His time in ‘cluster two’ was therefore only brief.  Other children, by contrast, may move between clusters or exhibit symptoms from multiple clusters over their lifetime;  someone with an autism diagnosis, for example, could begin in group two with a bowel disorder but move into group one at adolescence with the onset of epilepsy. Indeed, the data reported in the Doshe-Velez study found that a significant correlation existed between gastrointestinal and seizure disorders (though not between psychiatric and seizure disorders).

The authors of the cluster study suggest that different genetic and environmental causes may be involved in different ‘autisms’. Separating out the possible contributory factors for Dylan, however, seems fraught with difficulty. My poem Ear Infection weighed genetic as well as environmental factors in its reflections on cause and in the final stanza I refer to the impact of autism beyond Dylan  (once there is an autism diagnosis within the family it is natural, I think, to consider whether others may be affected, especially younger siblings).  Years after I wrote the poem I received some news which suggested that genetic factors may indeed have been at play in Dylan’s case, at least in part.

Dylan has two half-brothers; although I have never had contact with them what I knew about one of the boys from Dylan’s father made me wonder, in the aftermath of Dylan’s diagnosis, whether he might also be at least mildly affected by autism. In my poem I make passing reference to this.  The contact between Dylan’s father and myself was limited to financial arrangements while Dylan was growing up. However,  a few years ago an administrative error with Dylan’s maintenance payments led us to have a telephone conversation.  Dylan’s oldest half-brother, I discovered (now an adult),  had been diagnosed with Asperger’s Syndrome  and Dylan’s other half-brother was seriously ill with the bowel disorder Crohn’s disease.

More Chaos

We are a long way from the days when it was suggested that ‘refrigerator mothers’ were the cause of autism in children. However, in the absence of satisfactory scientific explanations I understand how these ‘magical’ explanations can arise.  For a while I had my own. In my poem I refer to the very long labour which preceded Dylan’s birth. I went into labour on cue on the evening of Friday 11th March at tea time. Later that evening I went into my local hospital but as my labour wasn’t progressing  was sent home again. I remained at home for the next two days while my contractions stopped and started. I didn’t want to go back into the hospital while things seemed to be progressing so slowly. In the end, though, I was persuaded to return on the Sunday evening.  At that point I had been in labour for two days and was exhausted. At around 8pm that evening, with no sign of me delivering, a midwife broke my waters. Although that sped things up, it would be another 4.5 hours before Dylan was born.

At one point, though, it had seemed that Dylan would be born earlier; just before midnight I managed to deliver the baby’s head.  ‘Here’s the head’ I heard the midwife announce. Then a lot of noise and exclamation and chaos as, apparently, the head disappeared again. In all her career, the midwife said, she had never seen a head be born and then withdraw back into the birth canal. I remember her checking Dylan’s heart and remarking that I had a very relaxed baby: ‘this little one ought to be distressed by now’. Afterwards, when Dylan was finally delivered, the disappearance of the head was passed around as an amusing story: ‘that baby took one look at the world and decided not to bother’ laughed my midwife.

Afterwards, back at home with my baby, I listened incredulous one afternoon to a radio programme telling a folk tale of how, in aboriginal culture, the grievances of the father are believed, sometimes, to obstruct the birth of the baby. After Dylan’s diagnosis, I would remember this and turn it to magical thinking as damning of a reluctant father as a refrigerator mother.

Making Sense

hodsock 007Of course I know, now, that is nonsense. I’m no nearer to making sense of Dylan’s autism though.  What difference would it make to know? a colleague asked me this week. Well, the research paper I’ve been discussing in this post suggests that conceptualising multiple autisms could help identify different potential interventions for people affected by autism (Miller, 2013). The three autisms that were identified as part of the study, for example, correlated with different levels of expressive language disorder and the timing of developmental delays. As I noted earlier, it is Dylan’s pattern of language and learning disability which I think has turned out to be most significant, not his autism, so this is of particular interest to me. If making sense of the reason for Dylan’s disability can help me to support him more effectively, that could make a difference. While I may no longer focus attention on cause or cure, medical research into autism still has a role to play in supporting Dylan and informing my advocacy on his behalf.

 

 

References:
Elizabeth Barrett (1998) ‘Ear Infection’  in Barrett, Elizabeth (1998) Walking on Tiptoe, Staple First Editions

Finale Doshi-Velez, Yaorong Ge and Isaac Kohane (2013) ‘Comorbidity Clusters in Autism Spectrum Disorders: An Electronic Health Record Time-Series Analysis’. Pediatrics
http://pediatrics.aappublications.org/content/early/2013/12/03/peds.2013-0819.abstract

Jake Miller, ‘Investigating clinical histories shows surprising evidence of multiple, distinct ‘autisms’. December 19th 2013.
http://hms.harvard.edu/news/autism-clusters-12-19-13?utm_source=SilverpopMailing&utm_medium=email&utm_campaign=12.24.daily%20(1)

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.

Walking On Tiptoe: reflections on diagnosis

Recently I was booksinterviewed for Spectrum, a magazine aimed at parents and professionals supporting people with autism. The reporter asked questions about Dylan’s diagnosis which required me to recall events from 17 years ago. Here is part of my reply to ‘When did you notice the first signs of autism and how was Dylan diagnosed?’

“As well as a proneness to being unsettled, Dylan wasn’t showing any interest at all in language or toys. He didn’t play with his things, but rather sorted them out  and organised them. And even at a very young age he had a fascination for moving lights and sound, for example from films or the television. He was also quite rigid in his food preferences and had  some strange rituals with his foods and behaviours.  I didn’t piece any of these things   together initially – I didn’t know anything about autism really – but I did notice them. Once he was up and about on his feet, I also noticed that he had a strange lop-sided gait due to walking on his tiptoes. I remember pointing it out to the health visitor at one of his check-ups – ‘look how he walks on his tippy toes’ I’d said. Later, this became the crucial bit of information – the last piece of the jigsaw if you like.”

All of the above observations about Dylan’s behaviour at two years old continue to be true of him at 19, with the possible exception of the toe-walking, which I don’t see him do so often anymore.

*

Being asked questions about Dylan’s autism diagnosis years after the event felt both strange and familiar. When Dylan was diagnosed I found myself riding the merry-go -round of questions which will be familiar to any parent of a child with a serious illness or disability. In those initial weeks we attended appointment after appointment with multi-agency professionals in children’s services, all of whom asked the same questions, more or less in the same order. I remember how tired I became of repeating my answers over and over. The story became so well-rehearsed, some days I wasn’t even sure it was mine. There is a sense, I think, in which language and narrative can distance us from experience, and the more I had to talk about Dylan’s development, the more detached from my child I felt.

Being asked the questions again, years later, presented me with an unexpected opportunity. I knew that I had once had ready answers, but with the passage of time I wasn’t sure I could remember them, or whether I trusted them anymore. So I had to think again about how Dylan had been diagnosed, and I found that process helpful; the ‘recovery’ of memories from many years before, filtered through my subsequent experience of caring for Dylan, offered a fresh way of organising my understanding of our (i.e. mine and Dylan’s) life histories. In this process, even the rigidity and lack of change which has been part of  Dylan’s autism could be transformed, in that I could view it differently and so respond differently to it. This reminds me, again, that it is easier, and often more effective, to make changes to ourselves than to others.

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One of my all-time favourite movies is Ordinary People, directed by Robert Redford and starring Donald Sutherland and Mary Tyler Moore. Moore and Sutherland play a married couple dealing with the loss of one of their two sons in a boating accident. The film is a marvellous study of grief and the way in which it affects each of us differently. Some of the most moving scenes involve the surviving son, Conrad, as he struggles to come to terms with his feelings of guilt and inadequacy, but it is the mother’s response which I find most compelling. Tyler Moore brilliantly depicts a woman retreating into a world of routine and order, making lists and lining up cutlery in drawers, refusing to engage with unplanned or unpredictable activity or emotion. For this character, the only way to deal with chaos is to order the things she is able to control: knives, spoons, forks.

An autism diagnosis has sometimes been compared to a death and when the reporter asked me how I responded to Dylan’s diagnosis I made reference to this: ” I suppose”, I said, “I went through the stages used to describe bereavement: shock, denial, anger, grief.  I was also plagued with low-level infections for about two years following the diagnosis: a cough I couldn’t shake off, insomnia, and later the recurrence of some tumours I’d had removed years previously. So the diagnosis took a toll on me physically as well as emotionally.”  Years later, I’d say that I’ve learned a few things from the mother in Ordinary People as well.

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I sometimes catch myself feeling frustrated that I’m working on the same things with Dylan as I was when he was a toddler. Here are some of the things I say quite often:  Don’t put that in your mouth Dylan; Dylan, just try it – you might like it; just eat the macaroni cheese Dylan – don’t do that with it; Dylan, can you open your eyes – look at me please; Dylan, keep your arms still please. These requests sound ridiculous when I write them down. How confusing it must be for Dylan to work out what the rules are about what you can or can’t put in your mouth or do with your body. But one of my roles as Dylan’s carer is to try and interpret the world for him so that he can move through it more safely and with less fear and confusion than he might otherwise. As carers we need resilience and patience to continue to respond to the things which never seem to change. And perhaps there is value to be found in rigidity? If I ask myself what the functionality is to Dylan of lining up DVDs or eating spaghetti on a Tuesday – and if I remember the Mary Tyler Moore character in Ordinary People – I think I can understand how such behaviours and routines help create order in what must seem a chaotic and unpredictable world. Perhaps the challenge for autistic people, and those who care for them, is to hold the competing forces of change and rigidity simultaneously, and creatively, in their lives – but then perhaps that’s a challenge for all of us?

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While Dylan’s autism hasn’t changed significantly in the last 17 years, my response to it has. No doubt in the process of recovering memory I’ve forgotten some things that seemed important at the time but which have faded or which I’ve suppressed because they were too painful. Forgetting, I often think, is as important a part of survival as memory. Some things, though, I am unable to forget. Although I noted earlier that toe-walking is something Dylan does less of now, it was this behaviour that was of particular significance to me at the time of diagnosis. As a poet I sometimes respond swiftly to experience and I captured events pretty much as they happened at the time in the poem Walking on Tiptoe.  If I were to write a poem about Dylan’s autism diagnosis today it would no doubt be a different poem to the one below. While both the style and emotion of the poem seem very raw to me now, perhaps without the rawness there would be no possibility of transformation.

*

Walking on Tiptoe

That afternoon, a pale amber light lit the tops of the hills
as we drove home from work and I felt myself unfurl to greet it,
grow brave after months of darkness.
I started to talk about him that evening while you chose a video
and the new baby kicked on the rug.
There was just something that didn’t feel right.
I could live longer without words, if it was only that,
but there were the cars which he clutched
and the things which he moved, backwards and forwards,
the route home from work which couldn’t be changed.
I asked you to get down the medical dictionary
and said:  Look up Autism, read me that.

In a strong steady voice you read to me from the living room
while I moved quietly around the kitchen, making his tea.
I listened vaguely to the symptoms and signs,
thinking yes and yes again, but not really engaging –
knowing the same could be said of all two year olds –
don’t want to look, don’t want to be picked up, don’t want to play or talk.
So I wasn’t desperately listening to you – was busy with a saucepan –
when you read, without hesitation (as if the words had no meaning):
There may be other behavioural abnormalities such as walking on tiptoe…

No, No, No. The pan clattered against the sink.  You continued reading.
Backwards and forwards, I paced the kitchen, flapping my arms.
No need for more words.  Stop, Stop I yelled at you and you ran to me,
then, spinning on the spot, not knowing where to turn,
how to get back, back to where I was before.
I banged my wrists hard against the glass in the patio doors,
wailing No, No, No as the light went out of the sky.
Inside, the genie was out of the lamp.
But oh to be free I heard him say as my son sat,
trapped in the glow from the screen, fixed by the colours.
I turned myself to the hills, switched on the outside light,
stared at the garden.

Later, when you understood, you smashed your fist against the wall.
The switch cracked from the bottom corner to the top right.
The next day you unscrewed the fissured plate; fitted new parts, fixed it up.

*


Reference

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