Keeping it together

The untold story of raising autistic children is the pressure it puts on a couple’s marriage, says Marti Leimbach

At three years old our son Nicholas had no language — by which I mean he did not speak, but also that he did not answer to his own name. He had odd, destructive habits: pouring milk onto the carpet and stamping on the wet patch, reaching into his nappy and smearing faeces onto the patio doors and climbing onto tables in order to get to the window, from which he apparently planned to test his ability to fly. By the time my husband Alastair arrived home from work I had just about managed to clean up, disinfect, dry, and put away the damage created while he was away.

“Death by children,” I used to joke, drifting off for a few hours of sleep before Nicholas woke and needed me again.

Going anywhere together as a family was a tense experience. Nicholas didn’t like zoos or farm parks or cinemas. He expressed his dislike by either crying or sitting like a zombie in his pushchair as we pointed to elephants or clowns or other children, who delighted in all these things while he did not.

All families of children with special needs experience stress — if only because they worry about their children, who are precious and loved and so much more vulnerable because of their disabilities. But we didn’t know we were a “special needs” family. We thought that Nicholas would grow out of this difficult “stage”. After all, our daughter Imogen had been an awkward toddler and was now a delightful five-year old.

We ought to have known better — Nicholas walked on his toes, shredded paper, cast objects into the air. Really, the diagnosis ought to have been obvious. But we were parents, not experts in developmental disorders. We didn’t know what autism looked like.

We soon learnt, however, that autism looked exactly like our son. He was diagnosed by a paediatrician who sent us away with a photocopy of a leaflet from the National Autistic Society.

Within our marriage I had always been the flaky, artistic one, never caring whether my chequebook was balanced or my car had a valid MOT certificate. Alastair, by contrast, read three newspapers on a Saturday, bought fat biographies of politicians, took care of our finances and went to work in a suit.

You would think that I would fall apart the moment our son was diagnosed, that I would buckle under the weight of such news and lean on Alastair to sort it out. But this is not what happened. While Alastair seemed to accept the received wisdom on autism — that it is essentially an untreatable disorder — I undertook to prove otherwise.

During the day I scoured the internet for information on autism, for interventions that might help Nicholas. At night I read case studies of autistic children, papers written by autism researchers. What I didn’t do was eat much, or sleep, or make love, or laugh. What I didn’t do was comfort my husband, who was also grieving.

Some estimates put the divorce rate among parents of children with autism as high as four out of five marriages. There are similar levels of distress in the families of other disabled children. Frankly, I am not surprised, given how little assistance many couples receive.

We were given no information on where we might get help for Nicholas. And in my own scramble to find out what to do for him, I lost track of what Alastair was feeling. Neither did I care. It sounds heartless to say my marriage did not matter to me, but that was the case. I was not angry with Alastair; I did not harbour any bitterness. It was only that he did not factor in my radar. Alastair could talk, which our son could not. He could understand what was said to him, which our son could not. He was not in trouble, at least in quite the same way as our son.

Ought I to have been more sympathetic to Alastair? Perhaps. One day he asked if I cared about our marriage. And to this man who had never done anything but love me I said: “Not right now.”

What I wanted was for Alastair to join me in my mission to help Nicholas. Looking back, I realise that what divided us was not so much the pain we were suffering as a result of the diagnosis, but our opposing positions on what to do in the face of it. I had always considered myself unfocused, a bit cowardly, but it turned out that when it came to my children I had ferocious attention and would back down at nothing.

Alastair, I discovered, was not so tenacious. This is not a criticism, his diplomacy, his willingness not to not make waves or insist on his will has won him many friends. However, in the case of our son’s diagnosis, my “unreasonableness” was exactly what was called for. I refused to believe our son’s fate was sealed at the age of three. Was I difficult? Yes, I was awful. But when the stakes are that high you have to make up your mind to fight.

And so we drifted, for months. I settled on an intervention for autistic children called Applied Behaviour Analysis, which I learnt from a team of consultants and therapists. Alastair went to work and came home, without much notice from me. We might eventually have parted had it not been for a small miracle that changed the landscape of our lives: Nicholas responded in an almost miraculous way to intervention.

The Sunday Times - 05 March 2006