Below is a short essay I wrote for Autism Speaks. To find out more about Autism Speaks, visit their website at www.autismspeaks.com 

 The novel, Daniel Isn’t Talking is reflects the situation for my family between the years of 1999 and 2001, what I’ve come to know as the autism years. Of course, the autism years have carried on. It’s just that I have grown so accustomed to them that they have ceased to require the appellation autism years and have just become the years, like any years. Daniel Isn’t Talking is not a memoir – very few of the events of the novel ever happened in my life – but the time of my son’s diagnosis had a particular feel to it, a rawness, a panic, and a call to courage that was unlike anything I had ever experienced. It is because of this – what would you call it? – emotional content that the novel is autobiographical. It contains within it exactly one aspect of my life: what it felt like to be me. What it feels like now.  

I have been asked in interviews how the novel differs from my own life and I can answer that question very easily: my real life was not sexy or funny, while the novel is both. In my real life I never fell in love with a therapist or threatened my husband’s lover with the prospect of babysitting my son. I never yelled at a psychologist for being patronizing and useless, never did battle with Bettleheim, even in my dreams.

My real life was dull by comparison, but there are things that I share with Melanie, the mother in Daniel Isn’t Talking, things that all of us with autistic children share. We all know the fear, the frustration, the tremendous, almost physical need to have a genuine reciprocal relationship with our child. There was a time not so long ago when my son did not look my direction or answer to his own name. There was a time when each day was so exhausting I woke with dread. We have changed, he and I, and it is not simply a matter of where he is on the CARS or the spectrum. We all know the incredible joy of seeing progress that the parents of “normal” children take for granted. We know people who helped us in ways we cannot even begin to describe, and to whom we will always be indebted. We all know a child like Daniel.  

Writing about Melanie allowed me to see myself freshly -- not as me, exactly, but as a woman separate from myself and for whom I found it easier to have compassion. By creating an alter-ego, by understanding how helpless she feels in the face of such a diagnosis, how incompetent and inadequate she considers herself, how ill-prepared for what is being asked of her, I was for the first time able to see myself truly as I was then – and in a manner I cannot quite describe, it moved me.

Like most mothers, I have run myself hard through the autism years. I have seen myself as a vehicle for my child’s progress, as the receptacle of my husband’s sorrows and fears, as a brave but trembling knight in a battle that I cannot entirely understand. I have been terrified by diagnosing paediatricians, disregarded by government bureaucrats, cowed by egotistical psychologists, shamed by every imaginable passer-by in supermarkets and public buildings. I have held back tears until I got to the car, clung to Nicholas and wept and sometimes in the middle of it all I’ve wished I could just run away.  

Never in any of this did I consider myself – by which I mean, myself as a human being separate from my family. However, in writing Daniel Isn’t Talking I was able to visit Melanie and in an extraordinary manner, meet myself as I was back then, with my young boy of 3 years, with my daughter just starting nursery school. I was able to examine Melanie’s thoughts, her motives, her expressions of grief and joy over her son, her ambivalent loyalty to her husband, and in doing so I can look freshly at my own life and make sense of it all.

This is, of course, what novels do: make sense of our diverse, inelegant, astonishing lives, weave together the apparent disarray of events and people and present to us freshly a kind of truth about ourselves that does not involve facts so much as themes. By writing about Melanie I am able to hide myself a little, even while exposing everything of importance about myself. I am able to unveil my most private thoughts in the most public of arenas and express something that I suppose I was hoping to tell all along but, between therapy sessions and arguments with the local education authorities, I didn’t have time.  

Daniel Isn’t Talking is the story that all of us with children with autism share, about someone who tries just a little more than is healthy for the child she loves, who asks more of herself than anyone can possibly give and then feels inadequate for not doing more. It shows us how we’ve changed, for surely we are different now; even our children are different. Everything has been tested: our marriages, our commitment, our loyalty, our trust. Everything has cost us greatly and been worth it. We have lived and are living extraordinary lives. The world sees us as extraordinary – or will do upon reading Daniel Isn’t Talking – not because of the novel, but because of the sort of people who the novel reflects: all of us who have fought daily, at any cost, for children whom others thought were hopeless.

We are doing so well, don’t you think?