So I did, and it was the experience of having a child that brought me back to writing. When my son was diagnosed with autism at the age of three, I started writing about my own life and about his. I’m still doing it. I could have written about parenting and autism in a novel, but I knew that wasn’t what I wanted to do. My story could only be told in the form of a memoir, one that combined notions of meditation, remembrance, and mourning, and that held even the most fragmented and chaotic life in its compass.

My son is eight now. His favourite foods are green apples and lettuce stalks. He loves numbers and Thomas the Tank Engine. He is funny and happy, confused and anxious. He likes repetition, predictability, and order – in other words, life as it is not.

How hard it is to capture in words the essence of people you love. More difficult still is working out what you have the right to write about. It might be acceptable for me to tell my story, but since a large part of my story is about mothering my son, how much of his story should I divulge? Whose story is it? Who owns the story of our relationship over time? How do I tell it truthfully? What is the truth of our relationship? Do I have the right to talk and write about my son as autistic, or is this a form of labelling that he should have the choice to accept or reject himself? How will he feel when he is older, if he reads what I have written?

These are just some of the many questions I have asked myself and continue to ask. As is my way, I went to women writers I admired and read what they had to say on the ethics of writing about others. The novelist Lynn Freed is not reassuring. She argues, in Reading, Writing, and Leaving Home: Life on the Page (2005), that writers are natural murderers and moral reprobates. When faced with a choice between truth and decency, even the mildest of writers, she says, will choose truth: ‘If it is done right, someone will be hurt.’

Helen Garner has been open about the dilemmas involved in writing about real people, both in fiction and non-fiction. In True Stories (1996) she states: ‘I thought I’d be ethically in the clear as long as I wrote “in good faith” – that is, if I laid myself on the line as well, applied to myself the same degree of analysis and revelation that I did to the other people concerned.’ She goes on to say: ‘I still happen to think this attitude is legitimate as far as it goes – but it’s based on an assumption of consciousness in the novelist which is over-optimistic to the point of being grandiose.’ I take her to mean here that we don’t really know what we are doing as we write, that we write blind, that writing comes long before understanding. Nonetheless, it is an appealing notion that you are in the clear if your intentions are good and you expose yourself at least as much as you expose others.

Writing about a child, especially one with a disability is different from writing about an adult. My son is what G. Thomas Couser calls ‘a vulnerable subject’ (Vulnerable Subjects: Ethics and Life Writing, 2004). For this reason, I need to be even more careful. The other side of this is that living with disability changes the level of privacy you can expect.

Before my son reached the age of four, I had breached his privacy many times. I have to tell my story to strangers all the time. What I am asked to reveal, as a parent, is a particular type of story. The scaffolding for the story is provided by the context and by my professional interlocutor. When my son was being diagnosed, I spent hours answering questions put to me by a developmental paediatrician, a psychologist, and a speech pathologist. The paediatrician asked about developmental milestones and physical health. The psychologist was interested in play and relationships. The speech pathologist focused on language. All these separate stories came together only in me. I kept trying to return to my son as a whole person, but then I would get derailed by details, like the way he mixed up pronouns or what he did in noisy places.

At the end of the process, the paediatrician wrote a long report on my son, indicating which of the criteria he met for a diagnosis of autism, and why. Reading it was a strange experience. It was true but untrue. It seemed to be less a story about my son than about a boy who failed to do certain things that his mother and these professionals expected him to do. The woman in the story – me – was also foreign. The report was full of phrases such as ‘the mother indicates that’ and ‘according to the mother’. It was only on reading the report that I became aware of the extent to which I act as translator and mediator between my son and the rest of the world. Of course, all parents do this with young children, but I began to realise the particular power that such a role carries when one’s child has a disability.

Over the years I have briefed psychologists, speech pathologists, occupational therapists, school teachers, therapy assistants, sports instructors, swimming teachers, hairdressers, dentists, neighbours and child-care providers. Every time I talk about my son I am rehearsing his life story, choosing which things I need to say and which to leave out. I am exposing his challenges, his anxieties, and preoccupations to strangers, who will work with him for a while then usually move on within a year. Each person takes notes. They have a file on my son at the school, the Disability Services office, the local council, the non-government agency that is supposed to provide services to the school, the respite service we never use, the child-care service he is too old to use, the doctor’s surgery, the hospital and at the offices of all our private therapists. The reason for giving information to professionals, schools and community organisations is to help them work more effectively with your child. That is totally benign. But how benign is it that little pieces of my son’s life are lying around the city of Perth, out of our control, irretrievable? Who owns these stories? How truthful are they?

In the end I have decided that I can tell certain stories about my son and our life together. I want other people to read these stories, because I want them to know that ‘a child with autism’ is funny, interesting, loving and loveable. He is much more than just a list of challenges or deficits. My work, to borrow Hilda Lindemann Nelson’s term, is really a form of ‘counter story’, a way of talking about my son that accepts his disability but doesn’t define him through it.

I try to be truthful in my work. If, as Drusilla Modjeska suggests in Timepieces (2002), evidence and imagination vie for ascendancy in memoir, then I try to allow both their space. I like Modjeska’s idea that memoir is ‘a mapping of the mind’ as well as the recreation of experience, that what matters may not be ‘truth to a narrative that exists outside the text’ (because of course there isn’t an outside narrative) but rather ‘fidelity to the creative process’.

My essay entitled ‘Reaching One Thousand’ contains a series of reflections on my son’s interest in numbers, on the fact that both my parents were mathematicians, on my resistance to numbers and mathematics, and how I have changed over the years through my experiences with my son. Because I was writing about numbers and maths, I introduced my parents and my siblings. I didn’t mean to – perhaps this is partly what fidelity to the creative process looks like. This was a challenge for my family, but they responded with generosity and forbearance. But it taught me how hard it is to isolate my own life from other people’s; how hard it is not to steal other people’s stories and to violate their privacy. It illustrated through experience what life-writing theoretician Paul John Eakin has claimed: that ethics is ‘the deep subject’ of all autobiography.

I don’t have any answers to these ethical dilemmas. Writing about other people’s lives is a bit like other aspects of human relationships: there are no rules, you do your best, you try to avoid harm, but sometimes you betray people.

Even my son struggles with notions of truth, self and reality in literature. He writes stories about two best friends, a frog and a toad. He often asks me, ‘Is this a fiction or non-fiction story?’. Sometimes I am not sure how to answer; his stories are made up, but also true. Although he writes and illustrates these Frog and Toad stories himself, he obviously sees them as shared works, because he asks me to act out the stories with him, allowing a certain amount of improvisation. As Toad (I am always Toad), I get to make some changes to the storyline and dialogue, so long as I stay within his general conception of what Toad might say or do. Sometimes I stray too far from his truth and he tells me off: ‘No, don’t say that.’ As with all collaborations, these stories change over time and according to the context. They may shift a little towards Toad’s perspective or more towards Frog’s. Sometimes they even reflect a shared perspective, becoming both our stories.

What is consistent in these stories is that Frog (my son) is the wise character and Toad (his mother) is the foolish, confused character, the one who learns. This reflects a deep truth that all parents know: we learn more from our children than we teach them.

This article was first presented as a paper at the ‘In the First Person’ conference at the National Library of Australia, in May 2008. Rachel Robertson’s essay ‘Reaching One Thousand’, which shared this year’s Calibre Prize, was published in the February 2008 issue and is still available from ABR.

Rachel Robertson lives in WA and is writing a memoir about parenting a child with autism. Her essay ‘Reaching One Thousand’ was joint winner of the Calibre Award in 2008. The February 2008 issue of ABR, in which it appeared, is still available.