Living Through The ‘Autism Years'

In exclusive essay, novelist Leimbach writes of 'reality' of raising autistic child;


By Marti Leimbach

The novel Daniel Isn't Talking 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

Daniel Isn't Talking Cover


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, or paid for doctors by hocking my engagement ring. My world was not populated by people quite so interesting as appear in Daniel Isn't Talking – and I 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 are different people; when I look back at the young woman (me) who fought so hard for her child, I feel almost as though I am glimpsing a past life.

Writing the novel gave me an opportunity to examine this life. By writing about Melanie I was almost forced to meet myself – well, not me exactly, but 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 understand myself truly as I was then – back in the thick of the autism years. I have seen now how young I was, how weary, how tough, and in a manner I cannot quite describe, it has moved me.

Like most mothers, I have run myself hard. 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 soldier in a battle that I cannot entirely understand. I have been terrified by diagnosing pediatricians, 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 my son 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 little boy of three years, with my daughter just starting nursery school. I was able to care about Melanie, understand her thoughts, her motives, her expressions of grief and joy over her son, her ambivalent loyalty to her husband, and in doing so I looked freshly at my own life and began to 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 ideas. 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 private thoughts in the most public of arenas and express something that I suppose I was hoping to say all along in my real life 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 yet 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 who others thought were hopeless.

It has been a hard time – I know that. The autism years go on forever. But we are doing so well, don't you think? I hope that Daniel Isn't Talking reflects that truth as much as anything. We have something to be proud of.

Marti Leimbach is the author of several novels, including the international bestseller Dying Young, which was made into a major motion picture starring Julia Roberts. Born in Washington, D.C., she attended the Creative Writing program at the University of California, Irvine, and Harvard University. She currently lives in England and teaches at Oxford University's Creative Writing program. Visit http://www.martileimbach.com/

Click here for an excerpt from Daniel Isn't Talking. Click here for a reading group guide.

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