This 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
I’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)
The 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.
In 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
Because 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)
As 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.
There 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).
The 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.
A 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.
Two 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.
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’.
As 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
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.
Adichie, C.A. (2014) Americanah. Fourth Estate