Axon: Creative Explorations

Paul Hetherington: Could you tell us about the book you are writing?

Rachel Robertson: It’s called Reaching one thousand. It’s a story about parenting—of my experience of being a mother—framed as a set of autobiographical essays. There are also stories about myself as a child. Sometimes the experience of being a parent has reminded me of my own childhood and provided new insights into how I used to be. And each of the essays addresses a different theme. One covers sensory experiences, one covers what you might call interests or obsessions—in this case, numbers; one covers, let me see … the idea of home. One is about the ethics of writing about family. Another is about social relationships.

I started writing because my son was diagnosed with autism when he was three years old. Autism is a life-long condition that’s usually diagnosed when a child is about two or three—sometimes a little older, sometimes a little younger. To receive a diagnosis of autism a child usually has some ‘differences’ – what the medical fraternity call impairments or disabilities—in three areas: communication, social interaction and interests. Typically, a two-year-old with autism will not really know how to relate to peers, will not really communicate effectively, will not really know how to play imaginatively, but might have very fixed preoccupations.

So my son was diagnosed when he was three, and as a result of that I started reading a lot—probably too much—about autism. And I started recording bits of our experiences. But it was really my reading that triggered me to write this book. And because I’m a writer, I keep a journal—as I suppose many writers do. I recently looked again at my first notebook, written when my son was two, two and a half, three. It includes a quotation from The handbook of autism: a guide for parents and professionals which was published the year my son was born.

And at one point, this is what the authors say:

It seems likely that children with autism are born with the basic knowledge that they are members of the human race either absent or impaired. (Aarons & Gittens 1999: 32)

I found this an extraordinary thing to read. Then I also read other, more enjoyable books. Books by Oliver Sacks, for example. Books about people with neurological differences, including An anthropologist on Mars, a chapter of which is about an animal scientist called Temple Grandin. She helped redesign the holding bays for cattle to make them more humane. Some people claim that Temple Grandin has reduced the suffering on this earth more than any other person. Anyhow, she said that when she is in a social environment talking to non-autistic people she feels like ‘an anthropologist on Mars’ (Sacks 1995: 248), because she doesn’t understand how non-autistic (neurotypical) people think and feel.

In An anthropologist on Mars, Oliver Sacks discusses three or four different people with autism, including the artist Stephen Wiltshire. He reproduces architectural buildings from memory. He can look at a building—say, a cathedral—once for 10 minutes and then sit down and draw it, remembering every aspect of it. He’s an adult now but when Oliver Sacks was writing about him he was a young man. Sacks wrote that:

Stephen’s drawings may never develop, may never add up to a major opus, an expression of a deep feeling or theory or view of the world. And he may never develop, or enter the full estate, the grandeur and misery, of being human, of man. (Sacks 1995: 232)

Sacks seems to be suggesting that even though he is an artist he is limited; that he is not ‘fully human’. He quotes a famous psychologist, Freeman Dyson, talking about another autistic young woman called Jessie Park, who is also an artist, and who is famous because in the 1960s her mother, Clara Park, wrote probably the first story about the experience of a mother bringing up a child with autism. This is what Freeman Dyson says about Jessie Park:

[she] has no concept of her own identity ... I think autism comes about as close as possible to the central problem of exploring the neurological basis of personality. Because these are people whose intelligence is intact, but something at the centre is missing. (in Sacks 1995: 219)

So, in deciding to write my book, I did so because I don’t think my son is in some way absent or impaired or that he fails to be fully human or that there’s something missing at the centre. I think there is something very different about him compared with what is generally understood to be ‘normal’—and I experience that every day—and I’m not denying that autism involves impairment and disability, but I was questioning what that meant. This triggered further research because I thought, ‘I’ve got to understand this and I want to know about this and I want to know about this assertion that Jessie Park has no concept of her own identity. What would it mean not to have a concept of your own identity? What does it mean to have that concept of yourself?’ So I started doing research on identity, subjectivity and narrative.

In the first year of my research I was asking questions such as, how does autism disrupt our ideas about identity or self and narrative? Do you need to be able to articulate an identity narrative in order to have a self? Do you have to be able to tell your story to be accepted in our world as having a self? To what extent is the self always narrated in relation to others and what role do these others, particularly parents, take? Is there such a thing as an unnarratable self? I actually called my working draft ‘The unnarratable self’, because the literature argues that narrative plays a central structuring role in the formation and maintenance of human identity. The literature also says that people with autism cannot construct such a narrative.

I pretty soon read and experienced enough for me to work out my own position on that, which I hope comes through in my book. My sense is that we all have unnarratable aspects of ourselves. And I also believe that the notion of narrating your life is very language-centric; that people who don’t use language and don’t communicate with symbolic language may still have a powerful life narrative. For example, gesture and movement and purposeful intent can be a form of life narrative. These preoccupations took me into the field of critical disability studies, a body of theoretical work built around disability as a social and cultural construction. As a result, the questions that I was asking myself changed. For example, I began to ask how I could create a written work that enacts a progressive view of disability in its form as well as its content. And by ‘progressive view’ I mean one that reflects the contemporary reality of disability, and not a traditional view. In the traditional view disability, particularly in literature, was often symbolic, so that a hunchback might be depicted as morally flawed, or a blind person depicted as having no insight. Disability was used as a symbolic trope to symbolise some sort of lack.

With the advent of modernism came the medical paradigm, which argued that disability is a problem that should be addressed through medical intervention or rehabilitation. And then there’s been the sociocultural view of disability where, for example, blindness is seen as an impairment, but the disability itself as caused by a society that doesn’t cater for people who have vision impairments. Since then there have also been other constructions of disability – resistance theorists and postmodernists, for example (see Gabel & Peters 2004).

I want to give you an example from what I would call a more traditional book about a child with autism. This is what I call a traditional recovery story. The book is called Let me hear your voice by Catherine Maurice—a beautifully written book—and I’m going to read you its back cover blub:

She was a beautiful doe-like child with an intense, graceful fragility. In her first year she picked up words, smiled and laughed and learned to walk. But then Ann-Marie began to turn inward. And when her little girl lost some of the words she had acquired, cried inconsolably and showed no interest in anyone around her, Catherine Maurice took her to doctors who gave her a devastating diagnosis: autism. In their desperate struggle to save their daughter, the Maurices plunged into a medical nightmare of false hopes, ‘miracle cures’ and infuriating accusations that Ann-Marie’s autism was their fault. Finally, Ann-Marie was saved by an intensive behavioural therapy. Let Me Hear Your Voice is a mother’s illuminating account of how one family triumphed over autism. (Maurice 1993)

Now that book was published in 1993, is still in print and is very famous. What I was concerned about is that the book tells a traditional narrative: that everything’s going terrifically, there is a perfect child, suddenly that child is diagnosed with autism, that it is a tragedy and there is a fight to recover her. That was the sort of story that used to be written about autism. Although I didn’t want to write that kind of story I was very much aware when you write something—when you write a memoir, for example – there’s a kind of narrative scaffold that happens, because if you start at the beginning, it’s very hard to avoid the traditional narrative arc that involves difficulty and recovery. My strategies for avoiding that traditional narrative arc included writing a series of personal essays rather than a chronological story.

Paul: So something discontinuous?

Rachel: Breaking up the chronology was a way of resisting the tendency to follow that redemptive arc.

Paul: That’s a little bit risky though, because publishers often like the narrative arc; because they can often sell a traditional story to readers more easily than other kinds of work.

Rachel: I have a wonderful publisher and a lovely editor at Black Inc, and one of the things we first talked about was that I didn’t want this to be framed as a sort of tragedy-to-triumph thing. I talked about it in terms of the story, of the title of the story, and I came up with lots of titles like ‘Autobiographical essays about parenting and difference’. The editor’s going, ‘Whoa, we actually want to sell this book. Get real’. I think their advice is very good. They have to make it accessible. But they didn’t try to make me write a more traditional chronological story.

The book’s title, Reaching one thousand, was the title of one of my essays. When my son was younger, he was absolutely obsessed about and devoted to numbers. We spent a lot of time walking around the street looking at letterboxes. We would just walk and walk until he could not move his feet any more and I had to carry him home, because his desire to see the next letterbox was just so profound; that was all he wanted to do. Or we had little packets of magnetic numbers that are used to teach kids to count and you put them on the fridge. He’d take those numbers and he’d lay them out: one, two, and so on. When he was a bit older but still very interested in numbers, he said he wanted to put 1,000 objects in his room. And I asked ‘How can you do a thousand objects?’ He said ‘Well, what I’ll do is ten rows of 100, and that equals 1,000’. A couple of hours later, when it was time to go to school, he’d done the first row of 100 objects. There were teabags and CDs and pens and socks … three odd socks, all in a row; he said ‘Look, I’ve done 100, but I’ve got to do nine more rows to reach 1,000’.

As a parent, I sometimes felt very different from my son. And I thought, is this a bit like cross-cultural parenting? If I’m writing about him, is this like writing about a culture I don’t really know, and should I take that stance of being, if you like, the anthropologist in the culture of autism? I thought about that in terms of the ethics of representing my son’s choices, because they wouldn’t be my choices. In this respect, research has been really valuable in terms of framing and informing how I write about both my son and myself. Without that academic research I think I would have written a different book, less layered in its thinking.

When my son was young, like many people with autism he confused you and I. And so he would say, ‘I get it’, when he wanted me to get something, and the other way around. He didn’t seem to have a sense that he was separate from me. He thought that I knew what he was feeling and thinking. There’s an anthropologist called Roy Grinker who studied how autism is viewed in different cultures. He’s written a book called Unstrange minds (2008). He explores how autism’s particular collection of neurological differences is constructed in different cultures, and how it is viewed very differently in different places. In some places it’s stigmatised and other places it isn’t. I think that’s a really interesting area, that issue of identity narration and cross-cultural divergences. The research I mainly found useful in those terms was about ethical cross-cultural translation, and looking at the ethical framing of cross-cultural issues.

Paul: Can I ask you a question in terms of ethics and what issues there were in writing about somebody else; writing about your son?

Rachel: There were lots. Initially I thought, I’ll just write this, I’ll never publish it. And, as you can see, I have changed my mind about that. In my book I gave everyone a different name, including my son and myself. But I’ve now gone back, at my publisher’s request and after some thought, to using my own name in the book. And I have my own name on the cover, which is not the same surname as my son’s, but obviously he would easily be identified.

As I was doing some of this research through the university, I had to go through an ethics process because I was researching another person. They wanted me to get informed consent. My son was much younger then and I refused to ask for it because I knew that he’d say yes but that it would be meaningless because I’m his mother. I said that I had other tools to deal with the ethics. They were things like changing names; and I also involved other family members, including my son’s father. My family read the whole book. Also, in my contract with the publishers we agreed that he wouldn’t be named, he wouldn’t be involved, they wouldn’t be asking for any photos of us together. I did a lot of research into ethics and life writing and wrote an essay on the topic, which is part of the book now. By exploring the literature and thinking deeply about it, I ended up feeling comfortable about publishing the work. And one reason for that is the drive, the mission I was on, to change people’s views about autism, to de-stigmatise autism and to refute those quotes that I talked about earlier. I wanted to show readers that autistic people are different, not inferior; they are fully human; they don’t have ‘something missing’ at their centre.

Paul: Can you say a little more about how your journaling relates to your practice as a writer?

Rachel: In the evenings, I would jot down in my journal some of the things that my son said. But I didn’t actually write a whole dialogue down. I might have done what they call composite scenes. For example, half of the dialogue might have happened one day walking home from school, and then a follow-on bit might have happened the next day. In a book you might put all of that in one scene because you don’t necessarily want to write that ‘the following day he said this’. That can quickly become boring to the reader.

You have to be careful how you do that but I think that a level of re-creation is perfectly allowable in this form, and I think that readers are smart. Few people would believe that every single word in a memoir is exactly as it really happened. For example, by tomorrow we’ll all have completely different recollections of this seminar. I wanted to write something in which I could pretty much stand by almost every sentence, while also allowing myself some creative licence.

When I was workshopping the first draft of one essay with some fellow writers, one of them said ‘Look, I don’t mean to be rude, but it’s really boring hearing this list of numbers all the time’. So I cut the essay back. In real life, the dialogue was probably another page of me saying to my son, ‘Eat’, and him saying, ‘I don’t feel like it, can’t we talk about numbers?’

Paul: How much of the truth do you think you can really get?

Rachel: If you say ‘I’m going to tell you my dream’, it isn’t the whole of the dream is it? You just tell a version of it. Putting it into words, you change it. And, in any case, if you really told the whole truth, all memoirs would be incredibly badly written and boring. The last thing you want to do is say ‘first this happened, then this, then this, then this’. So you are always fictionalising by virtue of what you’ve left out. For example, I have not covered some of the struggles of toilet training. I made that decision because I thought that might be the sort of thing that my son would not be happy to read about. And I didn’t feel it was necessary; it wasn’t something that was really important to my story. There’s a whole lot of other stuff. I don’t talk much about therapy. But actually I have spent a fortune on therapy.

Paul: Also, is memory reliable? A lot of studies of autobiographical memory indicate that while some of it is reliable, even recent memories can be quite unreliable, even if we believe them to be true. In a sense, our lives are becoming fictional as we narrate them, both inside our head and also to others. Did it worry you that you might actually be relaying things that sound as if they’re true but in fact may not be?

Rachel: That didn’t worry me actually. When I wrote about my childhood, I allowed for the fact that something could have happened. I have four siblings, so quite often I’d ask them about their recollections. In the book there is a moment when I go back after 35 years to visit the home I lived in until I was ten. I hadn’t been there for all of those intervening years. I go into that house and to me it was really important to revisit those scenes of childhood in another country. In the book I say, ‘Look, the house has changed but there’s one room that’s still the same’, and I take a photo of my shoes on the floor. When I was talking to my siblings and showing it to them, one of them said ‘No, that had red tiles on the floor’, and another said ‘No, it had blue’. So I introduced that as way of reminding the reader that in my nostalgic romanticism about my childhood home, there were also other stories that are repressed. I think that that’s fine because I don’t think a reader cares whether the floor was cream or red or blue. What they care about is the sense I am making of the truth. So truth in memoir for me is not the ‘actual’ truth – if there is such a thing – because it’s the work of an author to relate to her material in a way that makes meaning of her life and shows that work truthfully to the reader.

Paul: Part of the argument of an essay I was reading a few months ago is that one of the reasons people are looking to nonfiction writers for literal truth is that we’ve become so cynical about public culture, and people crave a source of authentic experience—just as it is or was—rather than something with spin. But my view is that writers are lying all the time and that you’d expect them to; it’s part of their craft …

Rachel: I guess one reason why people have gone to more personal sort of ‘true life’ stories—the small-scale micro personal stories—in both film and literature is that desire to have something that they believe is ‘authentic’. When I talk to students about truth in memoir I sometimes suggest that maybe we should stop talking about ‘truth’, because of the sort of things that you were saying, and that we should look instead for an ethical memoir. There are ways we can talk about how a memoir is written, how it’s constructed, the kind of process of its making; if a memoir feels to me to be an ethically written one then it’s more likely to be closer to what I feel comfortable with – to have some sort of authenticity, I guess. It’s partly about your ethical integrity as a researcher and a writer. In my case, I can say, ‘These are my memories and these are what I think my son said and did and this is maybe why he does it’, but quite often I don’t know. What I think is ethical is being upfront and saying that this is all mediated through me.

Near the end of the book I write about some of these issues. I mention that I have started reading sections of my memoir to my son and that he enjoys hearing them. One section he loved was a passage about how his father and I were trying to prevent him talking about numbers at the dinner table and instead get a conversation going about other things. This is the conversation between my son and me that I report in the final pages of my book:

We talked about why we tried to stop him talking about numbers all the time. Then he said, ‘Mum, it’s good that I don’t spit rice on the table anymore and run away isn’t it?’

‘Yes,’ I said, ‘it is good. And it’s also good that we talk about all sorts of things at dinner now, isn’t it?’ He didn’t reply, but looked at me through suddenly narrowed eyes.

Later that day as we sat down to our dinner together, he gave me a sly grin and said, ‘Mum, did you know there’s something called the Fibonacci series? I’ll tell you about it.’ And he insisted I listen to a sequence of numbers and how they are calculated.

I see this as his way of reinterpreting my writing. At one level he’s now old enough to accept that not everyone loves numbers or whatever his current interest is, and that if he wants good relationships, he needs to be able to discuss things other than his latest passion. On another level, it is clear that he is telling me that he is not going to give up his interest in numbers just to please me, nor is he buying into the idea that the superficial and generalist interests of neurotypicals are superior to the highly specialist interests of autistic people.

He isn’t yet challenging the way I’ve represented him, but I expect he will. In fact I hope he will. Writing a memoir about a mother-son relationship while living that relationship was always going to be tricky, not just in terms of ethics but also on questions of truth, on how the interactions between us can justifiably be interpreted. Since my starting premise was the idea of difference, it seems appropriate that Ben’s understanding of our relationship will not only be different from my own, but will also involve a critique and reconstruction of my interpretations. Whether he’ll ever do this through writing, I don’t know, but I can see he’s already doing so through living. (Robertson 2012: 211-12)