Capacity And Voice: from silent subject to co-author

I was surprised and delighted when someone I had met only virtually, via this blog, asked whether I would be interested in contributing to this year’s National Autistic Society Professional Conference. The conference organisers were keen to involve parental perspectives and to provide a space for the stories of those affected by intellectual disability as well as by autism; would I be able to talk about transition to adulthood in the context of someone who is ‘learning disabled and non-verbal’?

The invitation to speak at the conference came in August last year. In February this year, overwhelmed by marking and the demands of the workplace, I feared I had been too hasty in accepting.  Unable to meet the deadline for the inclusion of my presentation slides in the conference proceedings I suggested I bring them as a handout. ‘How many copies will I need?’ I asked the conference organiser. ‘540 should do it’ she replied.  I stared at the email in disbelief. Could that zero be a slip of the finger?

WP_20160302_001So it was with some trepidation that I arrived at the Telford International Centre earlier this month. The rally-sized hall with two enormous screens and professional sound and lighting engineers were all the evidence I needed that the zero hadn’t been an error. My session was scheduled as a plenary presentation at the end of the second and final day (rather than to a smaller audience as part of one of the four conference strands). Although I am used to delivering presentations and am generally a confident public speaker, this was easily the largest audience I had faced.  As I hadn’t attended an NAS conference previously, this  was also an audience with which I was unfamiliar.  My anxieties were therefore twofold: not just whether I would hold my nerve but if I had pitched my material appropriately.

I had spent some time, on the run up to the conference, pondering the angle for my talk. Although I was happy to tell a single story,  I wanted Dylan’s specific experience to illustrate issues which might be faced by autistic adults with intellectual disability more generally. My instinct to do this arose from my work as an academic where ‘single stories’ are used to illuminate processes and ideas. I was conscious, however, that autism is not my academic field:  I would be presenting material arising from my craft knowledge as a parent rather than from research. How, then, could I identify a conceptual framework against which the experiences of others might be considered?

Happily, in the run-up to the conference I happened on this (as is often the case, in the most unlikely of places). As the mother of someone who is ‘non-verbal’ I enjoy reading books about silence, an interest which sometimes takes me into theological literature (this post, for example, references the use of silence and hand signs in monastic communities).  In the weeks before the conference I had been reading The Edge of Words by Rowan Williams (the former Archbishop of Canterbury) and it was here I would find my framework for talking about the transition to adulthood of a learning disabled and non-verbal child.

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Rowan Williams’ interest in silence is in the context of his relationship with God.  In exploring the theological implications of silence, however, he considers other experiences of silence including that of non-speaking children and adults with intellectual disability and autism. Autistic people who lack mental capacity, Williams argues, have ‘a point of view and a capacity to create working symbols’ ; our task, he notes, is to make the space to allow these symbols to ‘surface and connect’.

Some of Williams’ illustrations of this process were familiar to me as they are based on the ideas of Phoebe Caldwell whose work I admire. I found Williams’ development  of these ideas compelling, however; both the poet and the autistic child or adult, he suggests, inhabit difficult territory where they are lost for words, pushed into extremis in the search for a language.  Putting language ‘under pressure’ in this way encourages the use of  poetic practices such as symbol and association to resolve the difficulty. Thus both poets and those with ASD (specifically the ‘non-verbal’) trade in paradox and metaphor.

As a poet as well as a mother I found this suggestion attractive. Dylan, I have often contended, is a poet by nature. Many of the associations and connections he makes in his search for ways of communicating would grace any poem (I give some examples in this post). Williams’ observation therefore made sense to me and helped me to an observation that would become the cornerstone of my presentation: that in order to ‘hear’ Dylan’s voice during transition I had to draw on my identity as a poet as much as (perhaps more than) my sense as mother or academic.

To illustrate this I selected five ‘scenes’ from Dylan’s transition. Some were examples of when I had ‘failed’ to hear Dylan’s voice (perhaps because I had been too rigid in my thinking) and others of times when Dylan or I had made creative connections and communicated more effectively. In scene three, for example, I suggest that Dylan might use ears as a symbol of trust and in scene five I give an example of the application of metaphor (getting lost) to my own decision-making. Transferring poetic tactics to everyday practices is something Rowan Williams acknowledges may be efficacious. While not wanting to suggest gut-knowledge as the basis for all decision-making my presentation concluded:

  • ‘Giving voice’ to the non-verbal requires us to be open to instinct and intuition as well as to logic and calculation.
  • Can involve listening to a young person’s behaviour rather than involving them in formal decision-making processes.
  • Requires us to pay attention to silence and absence of language as well as to excess.

As I put the finishing touches to my conference slides I considered ways of framing Dylan’s contribution to the narrative. Could I insert bracketed silences, indicating potential gaps in the presentation? Include a blank slide perhaps? These reflections encouraged me to review my assumptions about authorship. Previously I had thought of my material as an auto-ethnography with two subjects; now I realised the narrative also had two authors. The day before I left for the conference I changed my title slide: this presentation was no longer ‘For Dylan’, it was with him.

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References:

Phoebe Caldwell (2006) Finding You, Finding Me. Jessica Kingsley Publishing
Rowan Williams  (2014) The Edge of Words.  Bloomsbury

Snowdrops, Updates, Opportunities

It’s hard to believe that it’s snowdrop time already; here is Dylan enjoying a woodland walk at Hodsock Priory in the blue yesterday.

hodsock 2016 001

As we were leaving there was an ‘incident’. These are so rare now I was caught off-guard and momentarily thrown back in time to the troubled days I used to puzzle and worry over on this blog. They feel a long time ago, in some ways, but also (literally and metaphorically) like yesterday.

As ever, I’m keeping track of Dylan’s progress by the seasons. When I made my last post, on the 100th day of his transition, we were looking forward to Christmas. With the arrival of the snowdrops I can report that Dylan continues to do well. He seems settled at his new home and to enjoy the rhythm of his days. Dylan has a key worker now and I’m enjoying watching their relationship develop and make a positive difference to Dylan’s life.

Dylan still comes home at weekends which gives us chance to continue the activities, such as walks and visits to the cinema, we both enjoy. In the last couple of weeks, however, I’ve reduced my mid-week visits – a sign of the extent to which Dylan is comfortable and increasingly happy to live his life away from me. Besides, Wednesday night is soft play or Soul Lounge – much more exciting than pizza with mooey 🙂

I haven’t yet claimed the space for myself I said I was looking forward to in my last post; I have been so busy at work, I’m afraid, the poems are still unsprung. I tell myself a little longer under the good earth will do no harm and that, like the snowdrops, they will come when they are ready.

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This week I’m looking forward to an opportunity that has arisen as a direct consequence of my keeping this blog. I have been invited to speak at the professional conference of the National Autistic Society which takes place  1st-2nd March at the Telford International Centre. The theme this year is ‘Exploring New Thinking And Approaches’ and I’ve been asked to talk about supporting transition to adulthood in the context of someone who is ‘non-verbal’ and has learning difficulties. I’m going to use ‘scenes’ from Dylan’s journey to illustrate some of the ways in which I was able to ‘hear’ (and sometimes to ‘mishear’) his voice. My slot is on the Wednesday but I’ve managed to re-arrange my teaching so I can attend  both days; if you’re at the conference, do come and say hello.

Although I’m used to delivering presentations it will be the first time I’ve given a talk based on my experience as a mother. I’m a little nervous about my material but hopefully there will be something of interest in our ‘single story’. My main aim is to find a way of letting  Dylan ‘speak’ through me so that his voice can be heard. If I can manage that, I tell myself, it will be enough.

Here’s a link to the conference: http://www.autism.org.uk/professional2016

 

 

Learning Through Dialogue: reflections on blogging (ii)

Photo075This is the second of a two-part post reflecting on some of the things I have learned through Living with Autism. In part one I suggested that the blog has been invaluable in providing me with a space to reflect on key issues in relation to Dylan’s care; it has encouraged me to think more deeply about a range of topics and to pay closer attention to Dylan than I might otherwise have done.

For one post, for example, I kept a log of Dylan’s vocalisations in order to illustrate his engagement with speech and language, something I doubt would have occurred to me without the blog. I learned a lot from this activity, and from other observations made to inform blog posts, and Dylan and I have benefitted  from this process. I also noted, in my last post, that the blog has been helpful in the sense that writing can be transformative; while drafting posts I found new ways of thinking about familiar issues and emerged from the process of writing having learned something about myself and Dylan.

This growth and development does not take place in the writing alone however; it is through dialogue with others that some of the most significant and creative learning ocurred. One post, for example, reports what happened when I tried an approach with Dylan suggested in a comment on my blog. I have previously noted (in a post about autism and divorce) that what single parents of autistic children lack is space and dialogue; these two resources, I suggested, are invaluable if carers are to feel nourished and supported. As well as providing me with a sense of space, Living with Autism has been crucial in providing such dialogue. I am immensely grateful for the ideas, musings, suggestions, examples and encouragement received from others, and for the friendship and support Dylan and I have found here. The rest of this post celebrates the reader’s role by sharing what I have learned from (and about) an audience.

Being careful: reflecting through Chimamanda

untitledI’ve just finished reading Chimamanda Ngozi Adichie’s superb novel Americanah (Fourth Estate, 2014). The main character, Ifemelu, is a blogger; when she moves to the US from Nigeria she sets up a WordPress site called Raceteenth or Curious Observations by a Non-American Black on the Subject of Blackness in America (she later changes the tag line to Various Observations About American Blacks (Those Formerly Known as Negroes) by a Non-American Black). Later, returning to live in Nigeria, she sets up a new blog, The Small Redemptions of Lagos.

Ifemelu’s reflections on blogging punctuate Adichie’s novel and extracts from it are used both to carry the plot and to illustrate key themes. As well as being an inspired narrative device the material makes fascinating reading for anyone who blogs (especially chapter 33 which is devoted to the subject). We hear, for example, that Ifemelu checked her blog ‘like a child eagerly tearing open a present she is not sure she wants’ and that she received mail from people ‘asking for a drink, telling her she was a racist, and giving her ideas to blog about. ‘ (p. 303) When Ifemelu’s blog starts to generate interest among educators and business leaders and she is invited to speak at diversity workshops, to take phone calls she: ‘wore her most serious pair of trousers, her most muted shade of lipstick, and she spoke sitting upright at her desk, legs crossed, her voice measured and sure’. (p. 304)

Yet, we are told, ‘a part of her always stiffened with apprehension’. Initially this is because Ifemelu fears she will be exposed as a fraud – that she is no expert on ‘race’ and has no particular credentials to speak publically on the topic. She prepares carefully for her first engagement and feels deflated when her talk receives a lukewarm reception. That evening she received an email:

YOUR TALK WAS BALONEY. YOU ARE A RACIST. YOU SHOULD BE GRATEFUL WE LET YOU INTO THIS COUNTRY. (p.305)

untitledThe email is a revelation to Ifemelu who subsequently realises that the people who extend invitations to her to speak at events want to ‘feel good about themselves’ rather than to be inspired to enact change: ‘They did not want the content of her ideas; they merely wanted the gesture of her presence’. These people, Ifemelu came to understand, were not the same people as those who read her blog. These different audiences were open to different conversations. So, for example, Ifemelu tells her all-white audience at a diversity talk ‘America has made great progress for which we should be very proud’ whereas on her blog she writes: Racism should never have happened and so you don’t get a cookie for reducing it. (p. 305).

Ifemelu’s blog becomes so successful that in time she is able to hire an assistant to delete inappropriate comments on her blog ‘almost as soon as they were posted’. Living with Autism clearly does not occupy the same space as the fictitious Observations by a Non-American Black. While Ifemelu’s blog attracts thousands of readers and comments, this one is much more modest of aim and scope. I’m interested, however, in Adichie’s observations about blogging and particularly in the possibility that a blog audience may be more open to radical thinking than a non-virtual audience.

At the end of my last post I referred to an observation, by one of my colleagues, that the tone of my posts was ‘careful’. I suspect this was partly from my concern to write clearly but mostly because I was anxious. ‘Autism’ is a slippery subject. Nothing about it is generalisable. Everything can be qualified. The concept is contested. The language is different (and differently contested) in different countries and contexts. The ethical issues are complex, particularly when they involve individuals with learning disability and without speech. There are competing philosophical models and oppositional positions on policy and provision. The concerns of autistic people, professionals and parents are different. And (as with everything) there are agendas, trends, fads, heroes and villains. Like ‘race’ it is a topic which challenges and which demands our emotional as well as intellectual engagement.

When I started blogging I realised (from reading other blogs) that there is as much conflict as harmony in the online community and I trod carefully. As well as wanting to respect divergent views, and to embrace professional and personal perspectives, it was important to me that Living with Autism created a space which was accessible to people without a connection to autism. Juggling these different constituencies is perhaps one explanation for the caution in my voice.

untitledIn Adichie’s novel Ifemelu occupies an increasingly courageous space as she becomes more comfortable with her role as a ‘provocative race blogger’. While Living with Autism may not have courted this, I’d like to think that at least some of my posts challenge established ideas. Certainly, as time went on, I felt braver about discussing sensitive topics; recently, for example, I published a post on carer suicide/killing, a subject which has provoked fierce debate and which I would once have been too anxious to tackle. In the event I need not have feared; the ‘careful’ voice that my colleague identified has been equally true of the dialogue on Living with Autism. I’m pleased that the comments on this site, while not always in agreement, have been respectful and non-inflammatory; for this, Dear Reader, I thank you.

Namastē and Olá

wikiindiaBecause Living with Autism has not been as ambitious in scope I have not had to deal with the fear triggered in Ifemelu by the readers of Observations by a Non-American Black:

The blog had unveiled itself and shed its milk teeth; by turns, it surprised her, pleased her, left her behind. Its readers increased, by the thousands from all over the world, so quickly that she resisted checking the stats, reluctant to know how many new people had clicked to read her that day, because it frightened her. (p. 303)

wiki brazilAs I find statistics fascinating I am not capable of exercising Ifemelu’s restraint. Besides, the WordPress data is rich: it is not only possible to identify the popularity of posts and track waves of interest, visitors to a blog can be mapped by location. Living with Autism might have been viewed only five times in Ifemelu’s native Nigeria but I am surprised that it has been viewed at all in some of the 122 countries listed in my blog stats. I love the roll call of Myanmar and Mongolia (1 each), Curaçao and Nepal (2 each), Kazakhstan (3), Costa Rica (4), Georgia (5) and Mauritius (6).

It isn’t particularly surprising that the majority of readers come from five English-speaking nations (UK, US, Canada, Australia and Ireland) but I could not have predicted the position of some countries on the leader board: India, for example, is in 6th position with 287 views and Brazil is not far behind in 7th  (220). I realise these viewings could be from multiple readers or from a few loyal followers; whoever you are, Namastē and Olá.

Making sense

wikiusThere are other, more complex, statistical analyses which can be done and, indeed, once a year WordPress sends a ‘review’ to bloggers, offering headline statements about their blog’s performance. At the end of my first year of blogging, two things caught my eye. Firstly, the majority of readers of Living with Autism were located in the United States. I saw annual reviews of other UK bloggers (on different topics) and noted with interest that their readers were overwhelmingly British. This could be linked to focus; certainly there seems to be more interest in autism in the US than in the UK (these statistics have recently changed and I now have slightly more British than American readers).

wikiukThe other headline finding from the WordPress review of my blog was that my posts had ‘staying power’. I should ‘consider revisiting some of the topics I’d already written about’, the review advised, as my historic posts continued to receive relatively high numbers of readers. This advice didn’t seem very meaningful as all my posts are on the same broad topic: Dylan and my attempt to understand how best to care for him. It occurred to me recently, however, that what the statistics might do is indicate specific areas of concern within the autism community.

While all blogs have some loyal followers, many readers arrive at a site via an internet search on a topic of interest to them. These searches must sometimes be very disappointing; when I wrote a post called He’s Not My Toy Boy, for example, Living with Autism received a number of hits from people who were probably hoping to find one. Some of my posts, however, are found by people who seem to be searching for exactly the topic I have written about.

Reader Concerns

tears5A post I wrote about Dylan not producing ‘real tears’ (Why Doesn’t My Autistic Son Cry Tears?), for example, receives unwavering attention. Every week it is at or near the top of the week’s viewings and it stands third in the overall rankings. What is distinctive about this post, and what intrigues me about it, is the way it has made quiet progress up the statistics page, overtaking even those posts which received a flurry of attention in the aftermath of being selected by the WordPress editors to be freshly pressed.

The post is actually one of my least favourite pieces of writing; it is short and inchoate, offering an observation but ultimately (I think) unsatisfactory. It is my third most popular post only because people keep finding it when they type ‘why doesn’t my autistic child cry’? (or something similar) into Google. If I were an autism researcher I would definitely be asking questions: if you have such a background, please note that significant numbers of parents claim their autistic children do not cry! Other common interests and concerns (if numbers of viewings can be considered an indicator) include the difficulties of chronological age in relation to autism (my most popular post by a long way); understanding autism through poetry (My Trees Have Grown Hair and The Frog Prince); and the gender implications of autism.

wildlife-imaging.co.ukTwo of these posts were Fresh Pressed so it is not surprising that they are among my most-viewed posts. What I do find surprising, however, is that (with the exception of my post about crying) my top five posts are among the most demanding of those I have written: they are long; some draw heavily on (and include) poetry; and they engage with sociological or philosophical ideas. The fact that these are my most popular posts reminds me to trust the reader; visitors to this blog have clearly been prepared to read longer posts, to engage with difficult ideas and to read poetry. These data also remind me of Ifemelu’s reflection that the readers of her blog were more prepared to be challenged than were the audience at her workshops; I will not assume in future, that virtual dialogue must by its nature (or format) be less challenging.

My Preferences

The readers’ favourite posts are not the same as my own preferences. The posts which I have most enjoyed writing, or which I feel most satisfied by, tend to be those which have made me think very hard (this one, for example, which tries to apply a scientific paper to Dylan’s life history); which I have needed to be courageous to write (such as this one about alcohol and autism); or which have been demanding in terms of format (usually because I incorporated poetry or fiction as in this one about the sea and this one about air travel). I have also enjoyed reviewing films and books  – though, again, my favourites are not the same as the readers’.

caul 002As well as identifying autism and ‘crying’ as a likely subject for further exploration, I have suggested other potential research ideas in some of my blog posts. In this post, for example, I hypothesise that Dylan’s use of the camera suggests lip gaze may be a more appropriate focus than eye gaze when considering the communication of ‘non-verbal’ children and adults, while in this post I suggest that the letters of the alphabet may be ‘read’ by visual learners as objects rather than as symbols. I have also tried to promote lines of enquiry into the role of the senses in memory and the role of art in the education. These, however, have not generated any particular interest 🙂

As well as not being beguiled by potential research questions or hypotheses, the data suggest that readers are less interested in ‘diary pieces’ (recording small incidents in my week) and posts which focus on my life rather than on Dylan’s or on religion/spirituality. These least-viewed posts often (though not always) have ‘less to say’ (i.e. they lack a revelation or transforming moment); like Ifemelu’s readers, visitors to this blog seem to have appreciated discussion of the ‘big ideas’. It seems to be the pieces with a tentative and more meditative voice – often those which incorporate poetic texts – that have been particularly popular with readers. While this doesn’t mean readers demand to be ‘uplifted’ or can’t ‘do dark’, there is an appreciation, I think, of the beauty and the celebration – what I think of as the ‘poetry of autism’.

Not learning from statistics

IMG_0029 (2)My purpose in setting up this blog was to share my experience of attempting to secure appropriate provision for Dylan after he left school. When he finally took up a residential place this summer, that journey came to an end and a new one began. As I noted in a previous post, the initial weeks of Dylan’s placement have felt like a ‘phoney transition’ in that I have been able to see him during the week as well as at weekends. Furthermore, as the majority of Dylan’s things are still with me, rather than at his new home, the full implications of the move have not yet sunk in for either of us.

In a few days time, however, it will be two months since Dylan’s placement began. I have returned to work after the summer break and a new academic year is about to start; I won’t be able to continue the transition activities which I have been able to prioritise during the first eight weeks of Dylan’s placement. The phoney time is over and real time is about to begin.

Rather than close this blog down immediately, I plan to keep a daily diary recording the first 100 days of living without autism. I imagine the pieces will be short and ephemeral and if they contain any ‘big ideas’ at all they will be stumbled upon. I noted earlier that the ‘diary type’ pieces on Living with Autism have been among my least-viewed posts which suggests that the next phase of this blog is unlikely to be popular 🙂 You could be forgiven for asking if I had learned anything at all from the WordPress statistics? Well, yes – but reader numbers have always been a bonus rather than an aspiration and I imagine this will be even more the case in future.

My aim in recording the first 100 days is to observe the impact of separation on me and on my relationship with Dylan. I hope that this will be as helpful to us in learning to live without each other as it was in helping us to live our lives together. Whether you are staying or leaving, thank you for accompanying us this far.

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Reference:
Adichie, C.A. (2014) Americanah. Fourth Estate

Learning By Writing: reflections on blogging (i)

booksIt’s two years – virtually to the day – since I made my first blog post. I had no idea what I was doing that day: I simply typed into my barely-developed WordPress site and hit publish. The piece was different to my subsequent posts in that I didn’t write it offline, there were no drafts, I didn’t include images and it was relatively short. It was also different in terms of ‘voice’: more meditative and detached. Nonetheless, it has consistently been near the top of my blog post leader board and currently stands as my 6th most popular post (out of 82). This is not due just to longevity; there is no direct relationship between the number of views a post has received and when it was posted. My advice to anyone reading this who is hesitating about making that first post? Just do it!

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The focus and style of my first post puzzle me as my reason for setting up the blog had been more campaigning than musing. It was my frustration at the lack of provision for autistic adults with severe learning disabilities in my area that led to Living with Autism. My son had left his autism-specialist school that summer but had not been allocated any continuing provision. I was concerned about Dylan, who needed the structure and routine of a specialist environment, but was also anxious about how I was going to return to work. When a legal action against my local authority uncovered failures and omissions in Dylan’s care, my instinct was to share what I had discovered. My blog would be worthwhile, I told myself, if it helped other parents to get information I had not had access to.

If someone had told me, when I made that first post, that it would be two years before Dylan was allocated an appropriate placement I would have said I could not manage. And if I had known that I would have to learn how to support Dylan through some difficult ‘challenging behaviour’ I would have doubted my capacity to cope. If it had been explained to me, then, that in order to keep Dylan at home through these darkest of days I would have to make radical changes to my working life, I would have hesitated. And if I had been aware that surviving these years would come at high cost (to my poetry, my relationships and my health) I would have wondered whether I had the resources.

Perhaps it’s just as well we don’t know how the road ahead looks and what it will require of us. Most parents, when facing a challenging situation, give what is needed – and sometimes it is through such challenge that we discover just how deep our resources are and how much we are able to give. But I don’t think that we find this in ourselves alone; most of us also draw strength from some external force. For many of us, this is friends and family. For some, it is faith. For others, work or an interest or hobby. All of these have been important to me. I want to use this post, however, to reflect on the positive contribution of something I did not anticipate: blogging.

Learning through writing

batdetectorFor me, the most interesting writing is transforming; if I don’t come out of the process seeing the world differently, I’m not really interested in finishing it. This is true of any piece of writing, whether it is a poem, a short story or an academic article –  so perhaps I shouldn’t be so surprised that writing posts for this blog turned out to be a vehicle for learning and development.

If I want to be changed by what I write, I cannot be too in control of it. While I always have a defined topic in mind, and some key points or examples I want to communicate or explore, I try to leave enough space for a piece to breathe by itself once it has lungs. It can feel very scary when a piece heads off down a branch line, but I know that these diversions can lead to unexpected blessings as well as to dead ends. So I never plan a piece of writing (a poem or article or blog post) in too much detail or to the end because I don’t know, until I’ve written it, what I know. This might sound strange to people who don’t connect writing with thinking but for me the two processes seem to be inseparable; I simply don’t understand something until I’ve written about it.

I think for me this is to do with being a visual learner. I need to see how things connect with each other so I love moving sections of text around in a piece of writing to see if I can find new and surprising links. The connections between sections are important to me; I think this is about finding the progression and coherence in ideas. Perhaps my main preoccupation, however, is pattern and paradox; a concern with things that are similar and things that are different seems to underpin most of my writing. I suspect that it is through this re-organisation of material that (if I’m lucky) I happen across new connections and alternative ways of knowing.

So, at its best, writing blog posts has been a process of discovery; some of the pieces I have written have genuinely changed the way I think. This has particularly been the case for posts which focus on knotty abstract concepts, such as ‘independence’ or ‘voice’, and for sensitive topics, such as suicide and ‘challenging behaviour’ , but has also been so for posts with a more applied focus. Writing about the early interventions I made with Dylan when he was first diagnosed, for example, enabled me to understand the meaning and significance of the ‘treatments’ in a way I doubt I would have grasped had I not explored them through writing.

Writing is increasingly used therapeutically with professionals, particularly in health and allied sectors, and for several years now I have used it myself with staff and students in education in order to explore issues in personal and professional development. Keeping this blog has reminded me of the power of writing as a tool for exploring and transforming our knowledge, understanding and beliefs. Perhaps there should be more opportunities for parents and professionals to explore their experiences of autism through writing in structured and supported settings?

Making space

The other way in which keeping a blog has been helpful is in the space it creates for thinking and reflection. It’s a bit like having time in the therapist’s chair; setting myself a target of one post a week encouraged me to prioritise and make room for this. I would choose a topic from the scribbled list on my desk and spend half the week thinking about it (in whatever space I was in) before making the space to sit down and see where it would lead. Sometimes the posts would be written swiftly but if it were a thorny topic, or I found myself up a branch line, it could take longer than planned. Occasionally something I hadn’t expected came bowling in, elbowing its way to the top of the list, and sometimes (by contrast) the magic didn’t happen: there was no flash of pattern or paradox.

One thing I resolved when I started the blog was that I wouldn’t keep it at Dylan’s expense; on the ethics page of this site I identify a range of ways in which it could enrich Dylan’s life and a protocol to protect him from harm. One issue I don’t refer to on the ethics page, however, is the practical challenge of making space. When I set the blog up I told myself that it would be daft to be tapping away at a keyboard, writing about caring for Dylan, instead of actually caring for him. I had to find a space to blog which took nothing away from the time I spent with Dylan. How, as a single parent with a full time job, did I manage this? The short answer is that I sacrificed my diary and my poems.

The early morning hour before Dylan wakes, which I had previously used for writing, became ‘blog time’. Consequently, I haven’t done much with the manuscript of poems I was working on when I started this blog. In fact I have been so little involved in the world of my poems that it has been hard to think of myself as a poet at all some days. This would make me sad except that a) I’m not scared of fallow periods b) I have continued to edit poems that were already written c) the poems worth writing will still get written (albeit differently) and d) even if I never write another poem it was worth it.

The other sacrifice I made was to reduce the amount of time I spent writing a journal; a daily diarist from the age of 14, in the last two years I have allowed myself only one entry a week. Could I not have made the discoveries I refer to above through the process of writing in a journal? I doubt it. In fact I suspect that I have rarely discovered something new through a journal entry . I think this might be because I don’t pay the same attention to structure and organisation in a diary; as it’s handwritten, text does not get moved around and re-organised. I am therefore less likely to unearth pattern and paradox. I am also less concerned with logic and evidence in a diary entry and am far more indulgent and much less rigorous. Perhaps it is the one form of writing where I don’t expect transformation?

Being Provisional

dartofgreenAs I begin to think about writing poetry again I ask myself if blogging will have spoiled my poems the way squash once ruined my tennis (or so I claimed in the summer of 1986). What, I wonder, is the impact of one form on another? I am convinced that we take it into our deep subconscious; I know by instinct, for example, when I have written a sonnet-length piece.

When I started blogging I realised my posts were longer than most. I also realised, however, that I was incapable of writing to the more usual length of 1000 words and I have to work to limit myself to 2000; my natural ‘prose breath’ is, I suspect, closer to 4000 words. One thing I have enjoyed about the form, however, is its provisional nature. The WordPress facilities allow me to go on editing a piece even after it has been published; for me (for whom nothing is ever finished and everything can only ever be provisional) this is a marvellous format. I am an inveterate drafter and editor of my own work. Blogging allows me to go on polishing and I love it for this.

I have a reservation about this post-publication editing facility, however. If someone has ‘liked’ my post and I then edit it, how do I know they would still approve? I comfort myself (and, I hope, you) by limiting my edits to style not substance. If I change my mind about something as a result of comments from readers then I add a postscript or correct myself through the comment trail or in a subsequent post. Reader interaction with a blog is of course a central feature of the medium, particularly in relation to the capacity for learning and change. In the early days of my blog, when I had posted only a handful of pieces, a colleague suggested that my voice sounded ‘careful’. I replied that I checked my claims, of course, and was careful to make clear that my observations were based only on a single story. I realised later, however, that she hadn’t used ‘careful’ in the sense of ‘rigorous’; my colleague had meant I was holding back. Perhaps as well as being excited by the idea of a conversation with an international audience, I was nervous about the interactive format? My next post will reflect on this and on what I have learned through dialogue.

And Finally

more garden in may 009I am relieved to report that my request for a place at a National Autistic Society home for Dylan cleared the final hurdle last week and was approved. I’m not sure the implications of this have sunk in yet but it is what I have been advocating for and I am pleased to have achieved this for Dylan at last.

It is two years since I set up this blog. I started it because I was dismayed by the lack of options for Dylan when he left school. Initially my concern was that he wasn’t allocated enough day care to enable me to get to work (which I needed to do as a single parent) but I soon realised the issue was not how many hours Dylan was or was not entitled to but the shortage of appropriate adult provision.

This blog records Dylan’s difficult transition to the adult sector and its impact on us both. My posts during the first year described my attempts to secure education provision for Dylan, having established his entitlement to this through a legal action against my Local Authority. While I waited for a suitable post-19 setting to be developed, Dylan attended two different part-time placements during the week (one social care and one education-funded) and was cared for some of the time by me. That year was confusing and chaotic. The placements weren’t joined up and there was no continuity of care for Dylan. Leaving school was always going to be a difficult transition for Dylan but replacing a full time setting with a mixture of part-time care escalated the anxiety.

garden june 004Who knows to what extent this hotchpotch provision triggered the behaviours which emerged in Dylan at the end of that first year. Since then, my posts have focused on my attempts to understand Dylan’s ‘challenging behaviour’. My search for explanations has focused on physiological as well as environmental factors but the consensus is that the underlying cause is psychological. It seemed to help Dylan when it was agreed he could attend his day centre full time rather than continue with the miscellany of provision he had been accessing. Even with adjustments to his care, however, it was clear that Dylan needed more support than previously in order to stay safe and to access the community.

Within a year of leaving school, therefore, Dylan’s profile and the priorities for his care had shifted from continuing education to continuing health. Some of my posts during the last year describe my attempts to secure health sector funding so that Dylan’s needs could be met. Perhaps my earlier battle for education funding gave me the confidence to challenge an initial decision against health funding for Dylan but I would urge any parent in a similar position to do the same; having to appeal decisions seems to be increasingly standard so don’t expect the first judgement to be in your favour. When I eventually secured health funding for Dylan, more appropriate options for him opened up.

garden june 003When Dylan left his National Autistic Society school in the summer of 2013 a residential home  was being established for school leavers who needed higher levels of care. Dylan was familiar with the setting as he had stayed there overnight occasionally (it was previously used for respite for children attending the school). Some of his peers would be moving into the home and Dylan knew some of the staff too. Naturally I requested a placement for Dylan, thinking it would offer a seamless transition to an appropriate setting.

My request was turned down two years ago, partly because Dylan didn’t have health funding at the time but also because my Local Authority’s policy is to place adults in the community, rather than residential care, and not to fund placements out of city. My request for Dylan to be allocated a place at the NAS home failed against both criteria. This rigid approach is, I would argue, short-sighted. While I understand the ideology (post-Winterbourne) it remains the case that for some young people a specialised residential placement is appropriate. Dylan, for example, needs the customised living and outdoor space which residential care offers as well as access to a team of professionals rather than the single care workers who typically support adults in the community.

WP_20150712_18_21_50_ProFinally, after months of crisis and distress, Dylan’s need for such provision has been accepted; two years (almost to the day) since he left school, the NAS home I originally requested is the one that has now been approved. Although the home lies just beyond the city edge, I would have happily accepted somewhere within the authority had anywhere been suitable; indeed I pulled out of another out-of-city placement partly because I was reluctant for Dylan to leave his community. When I tried to identify a local residential placement, however, there was nothing adequate or appropriately specialised. If local authorities cannot make suitable provision for autistic adults with high care needs, they are not in a position to refuse to fund specialist placements out of city (or borough).

Because the setting that has been approved is a familiar environment for Dylan, transition so far has seemed relatively comfortable  (although I have been warned that behaviours are likely to increase initially). The plan for supporting Dylan into his new home is the best it could be; although the placement started this week, Dylan will be jointly supported by staff from his day centre and residential home and will continue to live partly with me for the first month. A holiday planned for August will mark a natural end to this initial transition period, after which the aim is that Dylan will be based at his new home.

more garden in may 018I know that there will be challenges ahead for us both. Although I was relieved to receive the news I have felt utterly exhausted since and have had moments of terrible doubt and anxiety. I tell myself this is surely natural. On Monday night – the first day of Dylan’s placement – he stayed overnight at his new home so I could fulfil a long-standing poetry commitment. I wasn’t sure this was what I needed on the day as I felt tired and emotional. On reflection, however, it was an appropriate way to mark the start of this next phase of our lives, living more independently of each other. The poetry reading was also useful in distracting me from my anxiety and preoccupation with the new arrangement; better than sitting at home, fretting.

A friend, recognising something of what I was going through and with the wisdom of already having waved goodbye to a grown-up son (though not in the context of autism), sent me a poem yesterday. The piece, Walking Away by C. Day Lewis, ends like this:

I have had worse partings, but none that so
Gnaws at my mind still. Perhaps it is roughly
Saying what God alone could perfectly show –
How selfhood begins with a walking away,
And love is proved in the letting go.

garden june 008I can see that even with the extra challenges confronting a parent of a disabled child the ‘letting go’ still has to be faced and embraced. Our life together is changing, I tell myself, not ending.  Although like Dylan I will live with autism forever,  I will no longer be living with it in the same way. Over the next few months, therefore, this blog will change and in due course come to an end. It has served its original purpose and Dylan and I have grown beyond its focus.

My plan is to keep the blog going, however, while I learn to let go. I have in mind to use it as a diary space where I can record my thoughts and feelings in the first 100 days of living without autism. I’ll start counting when Dylan moves full time into his new home after our August holiday. Before that, however, I have two more posts to write. One is on a difficult subject which I’ve been meaning to confront since I set the blog up; I have been ducking it but cannot any longer. The other post will offer some reflections on what I have learned from this blog and the ways in which it has been a positive force for me (and I hope Dylan) in the last couple of years.

And finally, I want to thank you (yes, you) for reading, for your encouragement, and for your friendship and support.

*
Images:
The photographs were taken in my backyard in May and June this year. I have never been a gardener and I don’t have much outside space but recently I have spent more time in my yard and found it therapeutic. I have come to think of this as a safe space where I can let go of some of the anxieties of being a carer. I think I will always associate it with this period of my life with Dylan.

On Not Putting An ‘X’ In A Box: the disenfranchisement of the learning disabled

Today is polling day in the United Kingdom; people over 18 in England, Wales, Scotland and Northern Ireland will be putting an ‘X’ in a box on a ballot paper. Some people will not be able to vote in the Election, however, even if they are registered: Dylan, for example. It’s not that Dylan isn’t entitled to vote – he has the same right to participate as other adults – but entitlement does not necessarily translate to participation.

One Person, One Vote

WP_20150506_21_02_29_ProThree years ago, when Dylan became eligible to vote, I telephoned a Government helpline for advice on elections and the disabled. Dylan, I was told, could have assistance reading the ballot paper but would have to go alone into the voting booth. I explained that Dylan would not be able to do this; he would need support to allocate and insert an ‘X’ on a ballot paper. Dylan, I explained, could choose between concrete objects which are meaningful to him but would not be able to discriminate between candidates on a ballot paper. This does not, of course, disqualify a person from voting; you don’t have to have a learning disability to be unable to distinguish between politicians. As the organisation Every Vote Counts note:

Like anyone else, someone with learning disabilities has the right to choose who they want to vote for by any criteria they like. It is not up to anyone else to judge if reasons for choosing someone are valid or not. Equally, the decision over whether someone votes or not must be theirs and theirs alone. Carers and support workers are not allowed to make decisions on behalf of the person they care for when it comes to voting.

While it is important to support adults with learning disabilities to identify their own voting preferences, those with significant support needs may be disenfranchised by the stipulation that carers cannot vote on their behalf. Certainly this is the situation that emerged in relation to Dylan. If Dylan couldn’t vote in person, it was suggested when I sought advice, I could request a postal or proxy vote for him. As the Government advisor talked me through the requirements, however, it became clear this was no solution.

Whether voting in person, by post or by proxy, a vote must be cast for the candidate that the person with a learning disability chooses. If that person is unable to engage with the political process in order to do so, this clearly raises challenges in terms of exercising the right to vote. Furthermore, Section 29 of the Mental Capacity Act (2005) states that a person can only appoint a proxy if they have the mental capacity to do so. I can’t see how Dylan can use his vote, I said to the woman on the helpline. It was possible, she suggested, that carers in a similar position to me were claiming proxy votes anyway – but it was up to me whether or not to apply for one, she added.

Two People, Two Votes

independent.co.uk2It is not the case, of course, that because Dylan cannot engage with the voting system he does not have political interests. As a vulnerable adult, Dylan has a stake in policy decisions about disability benefits and the organisation of health and social care. More specifically, he has an interest in public transport systems; inclusive sport and leisure facilities; the maintenance of public parks; and the availability of high quality care workers. These are the things which matter to Dylan and which make a difference to the quality of his life. Because Dylan has an interest in the provision of these local services, on the run-up to council elections (the first vote Dylan was eligible to participate in) I thought about applying for a proxy vote for him. I wasn’t comfortable with the implications, however: firstly because I would have to lie about Dylan’s ‘capacity’ in order to be allocated such a vote and secondly because if it were allocated I would have to vote on his behalf.

news.bbc.co.ukIf I were to vote on  Dylan’s behalf, I asked myself, would I cast his vote the same way as my own? Our interests are shared, after all; an inclusive society which protects the vulnerable and prioritises health and social care. Surely this  would mean two identical votes: ‘one person, two votes’? Or would it? What Dylan needs above all is effective local representation: a confident MP who knows the system, has leverage and can advocate for him. We live in Sheffield Hallam, Nick Clegg’s constituency. Although Clegg’s role as Deputy Prime Minister could have reduced his effectiveness as a constituency MP, that has not been my experience in relation to Dylan. Actually, Clegg was rather good when I asked for his help with a funding problem. Of course I cannot be sure that the swift resolution was due to Clegg’s intervention – maybe it was coincidence – but other parents of autistic children and adults in my constituency have reported similar experiences. I have never voted Liberal Democrat myself but if I were to vote on Dylan’s behalf I might. It is thus possible I would argue, when acting on behalf of someone else, to be ‘two people, two votes’.

Two People, One Vote

independent.co.ukFrustrated by Dylan’s situation, on the run up to today’s election I tried a different approach. I have Power of Attorney for Dylan: were there special arrangements for those with such authority, I asked?  As it turns out, there are, though this proved to be no solution either; as with vote by proxy, the person for whom you hold Power of Attorney has to authorise you to vote for them.

Today, therefore, Dylan and I are still ‘two people, one vote’. I assume that other adults whose learning disabilities mean they are not able to appoint a proxy are in a similar position. In addition, adults with learning disabilities who could vote with appropriate support may be unable to access this. Effectively, this disenfranchises adults with learning disabilities.

An entitlement to vote is not sufficient; it must be possible to exercise this right to vote. The nature of Dylan’s disability means that he requires someone to act in his best interests. While a vote on his behalf could be seen to threaten the principle of ‘one person one vote’ this does not, as I have argued here, have to be the case. It should be possible for the interests of adults with severe learning disabilities to be represented within a democratic system. A simple form, for example, could require those casting a vote on behalf of someone for whom they have Power of Attorney to include a brief rationale. Those of us who support adults with learning disabilities are quite used to justifying the decisions we make on their behalf; explaining a vote would not be excessive burden.

Alternatively, the government could just trust us.

*

Reference:
Every Vote Counts provide information and support to people with learning disabilities and their carers.

http://www.everyvotecounts.org.uk/

Images:
The composite images of the three main party leaders are from The Independent and the image of Nick Clegg is via bbc.co.uk

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.