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 Inclusive Faith: Mozart and poppies

bbc.co.uk poppiesAlthough I’ve grown accustomed to not being able to do certain things, every so often frustration catches me out. I suppose other carers have something they dream of doing: clothes shopping, perhaps, or leisurely lunches. I can live without those as it happens.

If I find myself frustrated it is usually about an arts event; the exhibition I can’t get to or theatre production I must content myself with reviews of. At the moment my head is turned by Paul Cummins’ installation of 888, 246 handmade ceramic poppies at the Tower of London (not simply an ‘art event’ I know). A colleague who visited last weekend showed me pictures on her mobile phone; it was heaving, she told me.

I know that Dylan wouldn’t cope; I have only taken him to London once before and although it was a success it would be no preparation for thick crowds at the Tower. Besides, the poppies would have no meaning for him. Actually, that’s not the case: the poppies may not have the same historical and cultural relevance to Dylan as to me, but I cannot claim they would have no meaning for him.

Even so, I cannot contemplate a trip to London with Dylan, particularly with visitor numbers set to rise on the run up to Remembrance Day and given the anxiety Dylan has been experiencing in recent months. I have pored over my diary looking for a Dylan- and teaching-free slot long enough for me to get the train to London and back alone, but it’s no go.

Against forgetting

DSCF1549I had forgotten until yesterday that I took Dylan to a poppy service last year. Although I had edited this from my memory I have a habit which means I can never forget entirely. As a long-term diarist I have records which stretch back years. Something I have done for some time now is use the previous year as a touchstone for the one I am living. So as well as writing an entry for 11th November 2014, for example, I will look back to see how I lived on 11th November 2013. So yesterday morning I flicked back to see what Dylan and I were doing this time last year.

The poppy service we attended had been advertised as ‘inclusive’ but it wasn’t a success, at least not for us. In my diary account of the poppy service (which I reproduce below) you will hear the voice of the church leaders and people with learning disabilities as well as my own voice and that of an omniscient narrator.

Poppy (11/xi/13)

The dark circle, he said, is the evil in the world; the bad things which we do. He showed pictures of tanks and soldiers with guns. Cartoon characters squaring for a fight. Hurting each other. Making people cry. These are the evil things. This is the dark circle. Stand here in the middle of the room, M, and hold this black circle.

Now what are these? he asked. These petals of blood remind us of Jesus, he said; that he loves us all, even you shouting for WW3 and echoing back words. Even you with a blank look and the boy looking through books instead of paying attention. Even you he loves.

Now I see that you are not wearing your poppies. Come here and hold this one. Look at it. Don’t peel the back off yet. Hold it in your hand. Look at it. Those are tears of blood.

Who is this on the screen? ‘That is him! That’s him!’ one man cried.

A reading

2014-08-05 16.09.53In the above account Dylan is the boy looking through books; these were located at a distance from the group. Dylan’s exclusion was partly due to the lack of adjustments made to the service : the chairs were arranged formally and proceedings were conducted through spoken language, with the balance  towards instruction. Signed hymns and projected images were the only attempts to enrich communication.

It’s easy to be critical of course.  The church was working with what it had access to in terms of space, resources and expertise. Church leaders are attempting to meet a need in the community and the group may well be valued by its regular members. I suspect that it wasn’t really aimed at someone on the autistic spectrum and the issues I am raising may be more about that than inclusion generally. I’m pretty sure, however, that the things which would have engaged Dylan might have appealed to others too.

Making a giant poppy out of tissue paper. Rattling poppy seed pods. Music and movement as a field of poppies. Simple memory games. Remembering someone you loved. Saying thank you.

guardian poppiesIt appeared hard for the people there – adults with learning disabilities – to sit and listen. Surely we can bring active methodologies from schools and adult learning centres into an inclusive church? The concept of the sermon may underpin religious practice in many faiths but it is an approach which needs to be re-thought if we are to include people from across the community. Perhaps this is already happening in some places; I imagine churches may grow and adapt to the needs of autistic children whose families are already members (much in the way families themselves do).

My discomfort at the service Dylan and I attended was not just about methodology, however; I was as troubled by what was said as by how it was delivered. I found the focus on ‘good’ and ‘evil’ difficult, for example, and I was aghast at the images of toy soldiers. How might Dylan and others make sense of Toy Story’s role in this I wondered? The narrative offered made a dark connection with personal life; I was disturbed by the attempt to link ‘bullying’ (as an example of evil) with Remembrance Day. I watched people shift in their chairs; this ‘making concrete’ was, I suspected, painful and confusing for some people in the congregation.

Although there were questions, the concepts were complex. I felt uncomfortable that people with a learning disability were being set up to fail with questions they couldn’t answer; although I’m sure this was not the intention, it felt patronising. Am I reading too much into this? It’s possible. But I have learned to trust the intuitive judgements that Dylan makes and his reaction was to distance himself.

Inclusive faith

Inclusion is more than the arrangement of furniture or use of Makaton; it is about attitudes and philosophy. For me this means ensuring Dylan feels safe, that his needs are considered and that his ability to contribute is assumed. I think these are inter-related in that Dylan feels comfortable where he can sense he is valued and his confidence increases when he can engage. The inclusive poppy service which I took Dylan to last year was not as inclusive as I had hoped in this sense.

There was of course another, more literal, way in which the service wasn’t inclusive; it was a special event, aimed at people with learning disabilities. I am not uncomfortable with separate provision although I understand why some autistic people, parents and professionals argue against this. Dylan attended a National Autistic Society school until he was 19 and he flourished and was happy there; in my view this was the appropriate education setting for him. So I’m not averse to taking Dylan into a specialised setting if I think it might benefit him.

So why did I take Dylan to an inclusive service?  Because recently, as Dylan has moved into adulthood, I have been thinking about ways I can create circles of support around him. I want to help Dylan find his own place in the community, separate from and beyond his relationship with me. Although I am not a regular church goer now, I was as a child. I was aware while my children were growing up, therefore, of the absence from their lives of something which had been an important part of mine. Joining a church seemed to me to be something which Dylan might benefit from now and enjoy; a church community for people with learning disabilities would, I hoped, be a safe and enabling place where Dylan could feel valued.

Mozart

ulm 002Although Dylan didn’t attend services as a child he developed a special interest in churches. I think this is partly because of the acoustics and the effect of light through glass (I have written about this here). Dylan also seems to share with others on the spectrum a draughtsman’s perspective; architectural features such as stained glass windows, bells, steeples and gargoyles are among his special interests. Unfortunately, the church where the inclusive service was held did not have such features; perhaps Dylan buried his disappointment (having been told that we were ‘going to church’) in those books.

After I read last year’s diary entry, however, I remembered that we had once attended a service at a church with bells and a steeple. We were in Knaresborough for the weekend and were walking back to our hotel on Saturday evening when my attention was caught by a flyer advertising Eucharist at St John the Baptist the next morning. The setting was to be Mozart’s Coronation Mass, one of my favourite pieces.

Knaresborough 038I spent the rest of the evening thinking about the service. I couldn’t take Dylan, surely? I pondered the logistics and possible scenarios and outcomes. No. It was ridiculous. There was no way that Dylan would sit through the service. And yet I couldn’t bring myself to give up entirely on the idea. I went to sleep that night promising myself that I would do nothing to make it happen, but if Dylan woke on time, and we happened to be strolling by at 10.30am, and if the crowd didn’t appear too overwhelming and somebody smiled at us, and if there were two free seats at the back – well maybe.

And so it was that Dylan and I found ourselves next morning at the entrance of the church. As one of the  wardens welcomed us I explained, simply, about Dylan; he might shout out, I said, but we’ll leave if need be. ‘Oh Jesus won’t mind a bit of noise’, the blessed warden replied. ‘Though I suppose Mozart might’, she added, as we took our seats.

That is him! That’s him!

The service lasted two hours. I would never have imagined that Dylan could cope but he was brilliant; he stood and sat and stared upwards at the stained glass. I listened and sang and supervised. Afterwards, several members of the congregation made a point of welcoming and congratulating us as if realising the extent of our achievement.

Knaresborough 036I imagine that the attraction of churches for Dylan is to some extent their familiarity and dependability; he enters churches to search for something that he knows he will find. What Dylan took from the service at St John the Baptist, perhaps, was a sense of connection; as well as recognising features of church architecture, he witnessed community spirit. This process of recognition is, I think, part of belonging.

And now I remember that what redeemed last year’s poppy service was one man’s joyful shout of recognition: ‘that is him! That’s him!’. He had seen that face before and was comforted. It was, of course, the one who doesn’t mind a bit of noise.

Images:

Images of the poppy installation at the Tower of London are via the BBC (the Tower) and The Guardian (individual ceramic poppies).

The other photographs were taken by me outside the Church of St John the Baptist in Knaresborough, at Osborne House on the Isle of Wight (poppies with lavender), at the Yorkshire Sculpture Park (single poppy) and at my local allotment gardens. The architect’s drawing of Ulm Cathedral is a section from one of Dylan’s favourite pictures; it hangs in the corridor outside his bedroom and I often find him standing by it, looking intently.

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:

Rudolf Steiner To Walt Disney: education and the spectrum of choice

walt disney I don’t remember exactly how old Dylan was when I realised that the only thing he was interested in was watching Disney videos but he must have been less than two years. Dylan’s films, books and CDs have been a constant presence throughout his life and at 19 they continue to be his main interest.

rudolf picIt’s taken me a long time to feel comfortable with Disney. I embarked on parenthood with other ideas: I had been determined that my children would play with simple wooden toys and natural materials; occupy themselves in creative and imaginative pursuits; spend time outdoors; and engage with handcraft and art activities. Electronic gadgets, computers and television sets were to be avoided or strictly limited. I’ve no doubt that many parents will be amused by this description and that parents of autistic children will be guffawing at the idea. However, for many years I’d been attracted to the philosophy of Rudolf Steiner which emphasised a curriculum based on the creative arts and the development of imagination in young children through free play.

steiner classroomAlthough my preference was for Steiner education I realised that Dylan’s diagnosis might make it less than ideal so enrolled him in a Montessori Nursery where the structured approach was said to suit some autistic children. My daughter, meanwhile, attended a Steiner Kindergarten and I assisted there  when Dylan was at nursery. I remember one day a child brought Thomas the Tank Engine slippers to wear which lit up and ‘tooted’ as he ran around (the sort Dylan might like).  I watched the Kindergarten Leader become increasingly exasperated by the sound-and-light show until, eventually, she removed the batteries. My hunch  that Dylan would not find it easy to learn in a Steiner environment, I realised, was probably right.

 Learning with Disney

walt on animationOn Dylan’s journey through the education system he has travelled almost as far as possible from my original ideological position.  Apart from the Montessori Nursery and a year in an integrated resource, Dylan has attended special schools where his teachers have (quite rightly) focused on his key interests in order to motivate him for learning. This has inevitably meant that Dylan has had rich access to electronic gadgets, computers and television sets while there has been considerably less emphasis on wooden toys and natural materials, creative and imaginative play, and handcraft and art activities.  Dylan’s educational environment may have been quite unlike a Steiner school but I’m fairly sure that it was, nonetheless, an effective learning environment.  For children such as Dylan, Disney resources can be the most appropriate approach to motivating and engaging pupils in educational settings; certainly over the years Dylan appears to have been ‘learning with Disney’.

snow white and appleBecause he has watched Disney films repeatedly, Dylan is familiar with details of plot and character which can be used to extend his social and emotional learning. I have used Disney characters to work on Dylan’s understanding of family; this not only reinforces social roles but helps Dylan make sense of the world by relating his own situation to wider society. Disney films are also useful for identifying emotional states because of the exaggerated but simple characterisation. And because the Disney plots have moral content they can be used to rehearse concepts of ‘right’ and ‘wrong’ and to help Dylan to recognise danger and harm.  Scenes such as the Wicked Queen giving Snow White the apple;  Bambi running from fire in the forest; and the Lion King being challenged by Scar all capture Dylan’s attention enough to capitalise on his interest and exploit this for purposes of learning.   It is Dylan’s interest in Disney films which is key here; until I tried to address this social and emotional learning through film, Dylan had shown no interest in recognising or identifying feelings or relationships.

bambi fireFor other children, of course, this learning emerges from a variety of narrative formats; I remember watching the children make meaning of oral storytelling while at Kindergarten, for example. But this is not a method which works for Dylan. As a visual learner, Dylan responds to the colours and caricatures of animation. As well as vivid moving pictures, repeated viewings have been a key to learning for Dylan who seems to approach each new film by layering information. The first time Dylan watches a film he will often only sample it; the next time he may sample a different section or reinforce the sequence he has already sampled; the third time builds another section; and so on.  This layering proceeds over what may be many screenings before Dylan has a complete map of the film. This is a slow process of accretion and very different to the way many of us watch films (how often do we watch a film more than once let alone the hundreds of viewings which Dylan has made of his films?). However, once the process is complete the film is embedded in Dylan’s memory. In terms of potential for learning, this is a tremendous resource.

lion king and scarFinally, as well as visual content and repeated viewing of content, control of content seems to be important. Dylan likes to direct his viewing; I think he likes the predictability and reliability of a film which always happens in the same order, at the same pace and with the same voices (compared to a human being reading a story book slightly differently each time). I’d say that it is these four elements  – interest, visual content, repetition and control – which particularly support Dylan’s learning and which Disney is so good at providing.

 ‘It’s Off to Work we Go’

dopey ears2It took me a while to realise that Dylan was learning with Disney, especially as the learning can be unplanned and not always what I might want to teach.  For example, for years Dylan had ‘pulling people’s ears’ identified in his school behaviour chart, with a series of actions and targets set for re-directing and discouraging this behaviour.  I was always puzzled by the ear-pulling which Dylan seemed to do spontaneously and usually to people he liked. I made the observation that while the school may regard Dylan’s ear-pulling as inappropriate, I thought it was actually an act of affection. Then one day, walking into the room while Snow White and the Seven Dwarfs was playing, I caught a scene in which Dopey holds his lips up to Snow White for a kiss as the dwarfs leave for work one day.  Snow White,  preferring to kiss the top of Dopey’s head, takes him by the ears in order to re-orientate his face to the floor so she can do this. Suddenly the penny dropped; this tender gesture between Snow White and Dopey was one which Dylan had copied; he took people he loved by both ears, just as he had seen Snow White do to Dopey.

A much more worrying example of Dylan learning from Disney films also took me a while to figure out. Dylan presents a particularly high risk around water as although he cannot swim he lacks sense of danger and in the past has flung himself fully-clothed into deep water and had to be rescued.  Around any body of water (harbours, lakes, rivers, reservoirs) I have to keep a very close eye on Dylan. So I wasn’t overly-surprised – though I was very alarmed – to find Dylan submerged in his bath water one day. I had left Dylan only briefly but this was long enough for me to find him under the water, holding his own head down. That day I yanked Dylan up out of the bath water coughing and spluttering; I resolved to not leave him alone in the bathroom, regretting the surveillance and lack of privacy for Dylan which this meant.  Another similar incident saw Dylan’s support plan updated to showers rather than baths; again, a huge loss for Dylan who loves his bath times.

pinocchio underwaterThis desire to be underwater started to spread to other watery contexts. On holiday Dylan would throw himself to the bottom of the sea, alarmingly. When I took him swimming he would spend the entire session attempting to go to the bottom of the pool. As a strong swimmer and ex-lifeguard I wasn’t unduly worried about the behaviour in itself; what worried me  was that it seemed to be based on a desire to drown himself, rather than to swim.

I chanced, eventually, on the explanation for Dylan’s behaviour which was, again, to be found in a Disney film (or, as it turned out, in a variety of Disney films):  Nemo involves various underwater sequences where characters are miraculously able to breathe, talk and live without coming to any harm. Another penny-dropping moment; Dylan was trying to copy the behaviour of characters in his favourite films who he loved and wanted to be like.  Further research revealed that a scene in Pinocchio takes place underwater and a crucial scene in a favourite Studio Ghibli film, Earthsea, also involves an underwater sequence.  Unfortunately, these underwater scenes are always fairly glamorous; the characters have great adventures and it seems to me undergo some sort of transformation while in the water (an appropriate image, I suppose, for being re-born).

nemoWhile Dylan throwing himself under water and pulling people’s ears may not be what I’d choose or encourage, they are illustrations of effective learning arising from motivation and consolidation through repeated exposure to the learning prompt. I am left wondering what else Dylan has learned through  film and animation?  Perhaps there are other things he does which I don’t understand because I haven’t got his intimate knowledge of the source material?

Bracketing the handcrafts

At the end of Dylan’s school career I was fairly confident that the decisions I’d made about his educational provision up to the age of 19 had been appropriate.  This didn’t, however, stop me from revisiting these choices as Dylan prepared to leave school.  Researching provision in my area I was delighted to find a community based on Steiner principles which offered education to adults with learning disabilities and autism. The first visit I made to the community was alone.  Everything about the visit charmed me; the activities included handcrafts such as weaving, pottery and basket-making as well as woodwork and horticulture. The classrooms and living areas were beautifully decorated with the distinctive Steiner colours, fabrics and natural materials. Community meals were sourced from the allotments and gardens. I walked around the centre that day as if in a honey-daze; it was so perfect I would have happily lived there myself.

I visited again soon after with Dylan. It never occurred to me that anything could interrupt the dream but – and you can perhaps tell what’s coming – I had an awakening.  Dylan very quickly grasped what was on offer at the community – or, more importantly, what was not – and exited at high speed, heading straight for the car park. It wasn’t so much that Dylan had little interest in the activities on offer as that he couldn’t find any evidence of the things he did have an interest in:  no TV Lounge or Computer room and no evidence of TVs in bedrooms either.  Dylan’s protest that day was very unsettling and frustrating for me but when I thought about it later  –  from Dylan’s perspective  – I realised that it had been ridiculous of me to shortlist a placement which wouldn’t support the one thing which mattered to Dylan more than anything else in the world. Dylan’s special interest is film and Disney is his passion: how could I possibly have ignored this?

This experience reminded me of how difficult it can be to bracket our own preferences when making choices on behalf of our children.  However, bracket them I must because it is Dylan’s life, not mine; while I can’t, and should not try to, overturn my values and beliefs when making decisions, I do need to filter these through the lens of Dylan’s interests and preferences.  Dylan’s life would be different and, I suspect, less happy without the gift of Disney; it would be wrong for me to take that from him.

rudolfcommunity

Acknowledgement:

Images via Disney and QuotesDump.com (source of image of Steiner classroom unknown but appreciated).

The Bat Detector: marriage, autism and divorce

The Bat that flits at close of Eve
Has left the Brain that won’t Believe.

William Blake, Auguries of Innocence

bat11In this week’s post I shift the emphasis from the child to the parents. Based on my experience of supporting Dylan I suggest that ‘dialogue’ and ‘space’ are crucial to carers but can be difficult to prioritise. The pressure on relationships of raising an autistic child  is well-documented and it is frequently suggested that the divorce rate for couples with an autistic child is significantly higher than for others. I revisit these assumptions and reflect on the relationship between autism and my own divorce.

Supporting the Sole Carer

In the 17 years since my son was diagnosed as autistic I have faced many challenging situations but by far the most stressful has been Dylan’s transition to adult services. Despite spending a huge amount of time and effort trying to get this right, when Dylan left school last summer I had still not managed to secure a placement for him. As well as worrying about the potential impact on Dylan, as a single parent who needs to work full time I became increasingly anxious about how I was going to return to my job after the summer. In August, experiencing feelings of frustration and helplessness, I decided to see a counsellor.

bat3As a single parent I’ve found counselling useful in the past as it provides me with a space for reflection and review. One of the things that I can miss, as a lone carer, is somebody to mull things over with. Without such dialogue my decisions go unchallenged and while that may be empowering in some contexts in other situations it is scary. Making decisions about a child’s future – especially a disabled child – falls, without doubt, into the ‘scary’ category. Although there are good friends and willing listeners in my life, I try to protect these relationships as much as I can from the endless and often circular debates I have with myself about Dylan’s care. Talking to somebody neutral, I hoped, might help me to identify new ways of thinking about a stressful situation.

Although Dylan’s day care still isn’t completely settled the situation is much brighter. I have some interim provision in place and I have been able to get back to work. Life feels like less of a crisis and more the struggle and juggle I am used to. I still have some of the free counselling sessions I am entitled to (through an employer scheme) remaining and the other day I was chewing over some of my continuing dilemmas about Dylan’s care when the counsellor interrupted: “just a minute. Where are you in all this?” I seemed to spend so much time walking in Dylan’s shoes, she observed, that perhaps I’d forgotten where I’d left my own? “Where is your voice in this process?” she asked. This was one of those moments that make the effort of counselling worthwhile; a question I wouldn’t have asked and that stopped me in my tracks.

bat10I always argue that when I try to see the world through Dylan’s eyes I am learning about myself as much as I am learning about him. The time I spend walking in Dylan’s shoes not only helps me to understand his world but alters the shape of my own feet. I am constantly stretching and shrinking and distressing and polishing my shoes, depending on what I’ve learned from wearing Dylan’s for a while. Perhaps if I sometimes forget where I’ve left my own it’s because they don’t fit anymore. But I admitted to the counsellor that it was easy to be absorbed by this process. While I had set up a blog with the intention of writing from the perspective of a carer, for example, my posts often wandered into Dylan’s world. I reflected on a recent blog post about language in which I had reported Dylan’s attempts at speech but erased my own voice from the conversation completely. Could it be the case that in order to give voice to Dylan I had to silence my own?

Making Space for the Carer (In and Out of Marriage)

Since then I’ve been reflecting on the importance of space to carers. In particular, I’ve been asking myself whether it’s always harder to protect personal space if you are a sole carer, or whether all carers, including couples, find it difficult to keep a separate space for themselves. Perhaps inevitably I’ve been comparing my recent years as a single carer to my earlier experience while married, and I’ve contrasted my own experience with my outsider observations of others.

bat8One memory I keep having is a vignette from last summer. In this memory I am watching a family with a disabled child waiting to disembark from the ferry as we arrive in France. It has been a long crossing and it’s late afternoon. Their child is younger than Dylan – maybe ten – and clearly tired and fed up; he is hanging heavily from his father’s arms, knees buckling in protest, as we wait in the stairwell for the doors to the car deck to open. My attention is taken by the child’s parents. They are staring silently ahead at the metal doors, as if willing them to open. They don’t speak or look at each other. I think I recognise the dynamic between them of the exhaustion of one parent feeding the exhaustion of the other. I remember to myself how couples can sometimes mirror each other emotionally and aggravate rather than relieve difficult states of mind: frustration, anxiety, tiredness. I imagine to myself that they have become temporarily locked together in a negative space and in that moment I feel glad that I am alone with Dylan. He is tired too and impatient for the doors to open. I am anxious about the drive ahead of me. But at least I can’t drag down anyone else or let myself be dragged down by this; alone, perhaps, there is a space into which I cannot let myself fall?

bat5I’m not being smug about being single; I realise this is only a part of the picture and that on the other side of the coin there’s sharing and support. I know a number of families living with autism where the parents have stayed together and are a terrific resource for each other and for their child. Clearly this is the best of situations. For a long time I believed that, statistically, these families were the exception rather than the rule. I once read that 95 per cent of marriages affected by autism end in divorce and the figure of an 80 per cent divorce rate is regularly cited in the literature. At various times I’ve looked for the source of these statistics (which seem high to me) but have never been able to verify them. When I’ve mentioned these data to friends who are living with autism, however, they’ve never expressed surprise. My lived experience would also tend to bear out a higher than usual divorce rate among parents of autistic children.

Data from recent studies suggests that the divorce rate among families with autism is not as high as has previously been thought. In 2010 a US study claimed that 64 per cent of parents with an autistic child stay together, compared to 65 per cent of couples not affected by autism (Freedman, 2010). This claim to almost negligible difference in divorce rates is not borne out, however, by another study conducted the same year (again US-based) which suggested a divorce rate for couples with an autistic child of 24 per cent compared to 14 per cent for couples without an autistic child (Hartley, 2010). I haven’t been able to find any data for the divorce rate among couples with an autistic child in England and Wales but the overall divorce rate was running at 42 per cent in 2012 (Office for National Statistics). Although we cannot extrapolate directly from the US studies to the UK, it seems fair to suggest that while the divorce rate for families living with autism in the UK is unlikely to be as high as has previously been claimed, it may well be higher than for families who do not have an autistic child.

bat7Hartley’s study of divorce rates in the US suggested that the differential between families with and without autism may be explained by the higher prolonged risk of divorce faced by families living with autism (Hartley, 2010). While all marriages face a certain amount of stress when children are young and dependent on their parents, it is suggested, this usually reduces as children reach adulthood, and marriages which have managed to survive the early years are then less at risk of ending in divorce. By contrast, the stress on families living with autism often continues as the autistic child becomes an adult; where the person with autism continues to be dependent on parental support, stresses on the parents’ marriage also continue.

The implications of this seem to me to be clear. Families make an enormous contribution to the well-being and flourishing of people with autism; as well as the economic commitment of, for example, personal support and housing, they make a  lifelong emotional investment. But this can come at a high cost to the health and well-being of carers and families (in some tragic cases extracting the highest cost). If, as the research suggests, the toll taken on some families takes place over the long term, surely as a compassionate as well as rational society we should provide continuing support?

The Rock of Values

bat9I’m aware, of course, that not all marriages where there is an autistic child in the family need this support – and, indeed, that not all couples could be helped by this. Dylan was ten years old when my husband and I divorced which makes my marriage an early casualty rather than a result of prolonged stress. While my marriage wasn’t a casualty of autism directly, I do believe it played a part; for some people it is perhaps not the long-term stress of autism which weakens a relationship but the stresses which it exposes. Having an autistic child, I would suggest, challenges us at a very fundamental level; it requires us to reflect on what it means to be human and demands that we examine our core values. The aftermath of an autism diagnosis – not unlike bereavement – invites us to inhabit some dark places of the spirit. For me this involved a radical review of how I had lived my life and what was important to me for the future. Having an autistic child was certainly not an experience I was going to survive unchanged.

In an earlier post about diagnosis I referred to ‘Ordinary People’, a film which focuses on the response of grieving parents to the death of their son in a boating accident. The film explores the different coping mechanisms of the father and mother and the way in the months following the accident they become increasingly estranged. As the family falls apart the father follows his son into counselling; acknowledging the impact of the bereavement on the family, he tells his wife that he is no longer sure he knows who she is or whether he loves her anymore. By the end of the film, the marriage has broken down. Perhaps, the father tells the counsellor, they would all have been OK if the boating accident had never happened. They had been happy before: a perfect couple, people had called them.

bat6In a similar way I could ask whether, if my husband and I hadn’t been tested so fundamentally, we would have been OK. Perhaps, had life continued as we’d thought it promised, the differences between us would never have revealed themselves. But, as I would argue, autism challenges us at the core of who we are and exposes our basic values. In our approach to disability (medical to social model), selection of therapies (behaviourist to constructivist), choice of education and care, we reveal ourselves. Is it so surprising that in this process some of us should develop or discover things about ourselves or our partners that we hadn’t previously known? This is not in itself , of course, a reason for a relationship to break down. However, a realisation that you don’t share the same fundamental values as the person with whom you are trying to co-parent a child with autism may be. There is something about the nature of autism which demands engagement with our fundamental selves. Nothing else will do. It is on this rock of values, I would suggest, that partnerships can come to grief.

The Bat Detector

bat detector 001

Some years before my marriage ended, while Dylan and my daughter were still young, I wrote a sequence of poems using the metaphor of detecting bats to explore the ways in which communication can be disrupted or breakdown within a family living with autism. The sequence is focused on a period of time when my ex-husband was building an electronic box which would translate the sound of bats to a frequency which we could hear (bat calls are in ultrasound which the human ear can’t hear). It struck me as ironic that he was going to such lengths to hear bats when there were such profound obstacles to communication with Dylan, so I used the bat detecting as a metaphor for our relationship with each other and the silent child.

The opening poem in the sequence focuses on the failure of communication between a couple as the woman struggles to care for their small children while the man builds a bat detector. Although the sequence concludes optimistically with the couple finding new and creative ways of communicating with their son and with each other, the opening poem deals with the sort of issues I have raised in this post: the values of caring; support for carers; and a space away from the role of carer. Although the poem focuses on the female narrator’s need for space, it could equally have been written from the perspective of the person building the bat detector. The bat detector in the picture isn’t the same as the one in the poem; when my husband and I divorced, he got to keep the bat detector, and (years later) I bought myself this new – and improved – version.

The Bat Detector

At the weekend you audit the parts –
list resistor, capacitor and circuit board,
order pieces of kit on the kitchen table,
collect screwdrivers and knives.
You are building a Bat Detector –
a Magenta Mark II with built-in speaker
and volume control. Straightforward assembly –
some soldering, cutting and drilling of holes.

You show me the leaflet; point to a picture
of a small plastic box with two dials,
one marked with kHz, and tell me how different
species register on different frequencies –
that our ears hear only as high as 20,
but above that, in a band of ultrasound,
we will find the call of Pipistrelle, Horseshoe,
Daubenton’s and Natterer’s bats.

Our detector will convert these calls for us.
We will hear them chatter at dusk, before
the roost, pick up the din of their ‘feeding buzz’.
We will hear the high-pitched squeak of baby bats
calling for their mother. You are absorbed by this –
work all afternoon drilling the casing,
soldering resistors and chips on a copper circuit,
manipulating tweezers to thread thin wire.

I stumble, clumsy, through the house
collecting toys and nappies. I heave and sigh.
I wash the pots and stir the saucepans,
fiddle with exhausted pens, a late assignment.
I break and snap. I play peek-a-boo, show
the children how to match their shape blocks,
push them through. I retreat to the attic, hang
upright by my thumbs. I need support from you.

We have a child with two year’s worth of words
and another, older, who does not understand
the social order, cannot play or speak.
You are fixing frequencies on your box –
tuning us out, neglecting to hear your son’s squeak.
You are adjusting your volume control, turning
down the side of me, wailing on long wave –
pitching my 20kHz calls down the stairs.batdetector

References:

Barrett, E. (2005) ‘The Bat Detector’ in The Bat Detector, Wrecking Ball Press

Freedman, B.H. et al (2010) ‘Relationship Status Among Parents of Children with Autism Spectrum Disorders: A Population-Based Study’ International Meeting for Autism Research

Hartley, S. L et al (2010) ‘The relative risk and timing of divorce in families of children with an autism spectrum disorder. Journal of Family Psychology, 24 (4) 449-457

Sources of bat images unknown but appreciated.