A Life Less Ordinary

When Marti Leimbach realised her son was autistic, she longed for him to be 'normal'. Now she's not so sure

The first signs of my son's autism were not in him, but in me. I felt anxious in a non-specific but constant way about him. At two years old Nicholas did not respond to his name. I thought he might be deaf so I took him to a consultant who promised that his hearing was normal. He could not talk so we went to a different consultant who assured me he would speak when he was ready. At the GP's I was told there was nothing wrong with my son - it was me. I was too anxious.

During the day he crept silently through the house investigating his favourite objects: plugs, digital clocks, the shining brass of doorknobs. He lay on the floor for hours spinning the wheels of a toy train.

He ground his teeth and made a sound like growling. Eventually, the doctors agreed there was something wrong; then the word autism crept into the conversation.

The worst part of the diagnosis was that suddenly I could not see Nicholas as a blond-haired three-year-old without imagining him as a disabled adult. I could not look at my five-year-old daughter without seeing her as a teenager who resented her mentally impaired brother.

All the things Nicholas did - the way he tossed toys in the air and giggled, the way he collected disc-shaped objects (milk-bottle tops, draughts pieces, coins) instead of the soft toys preferred by other children - turned out not to be traits of Nicholas, but traits of autism. I remember how angry I became when I was told that yet another aspect of him - his half-smile, or the way he tidied his videos into neat piles - was just an additional sign of his disorder.

At night I read accounts of autistic children who had progressed: one child with no language who began to speak; another who could not understand the purpose of a toy and then, after much intervention, learnt to play. I dreamt of one day telling a similar story about Nicholas before an audience of teachers and psychiatrists.

These were the people who told me Nicholas would 'have no useful language', would never attend normal school, and that our efforts to teach him would make no lasting difference. They would all be amazed by his transformation, by how he had shed autism and become a splendidly ordinary little boy.

Of course, this is not the story that transpired. At nine years old Nicholas has made great progress but he will never be normal, and I have learnt that 'normal' should not be the goal. The tools we have given him, hour by hour through an enormous educational effort, have allowed him to express himself - and who he is still includes a great measure of autism.

Nicholas no longer collects disc-shaped objects but rather pictures of guitars, which he cuts out and pastes all over the house, on walls, doors, desktops and the television. He asks odd but fascinating questions: are there any special rules in Sri Lanka? Which hand do people eat with in Iran?

He talks and laughs to himself. He walks ballerina-style on his toes and reads maps, not books. He tells me that his toenails have feeling in them and cannot be clipped. He will only sit in the middle - and I mean the exact middle - of a train.

However, he doesn't 'live in his own world', as autistic children are sometimes said to. He is not silent or withdrawn. Due to early intervention, Nicholas manages his autism so that it is not as great a disability as it could have been.

Instead of throwing himself screaming on to the floor in Clarks, he explains to the shoe-fitter that no one is allowed to touch his toes. When he approaches a person on the train and asks for their seat, which he believes to be the exact middle seat, he does so in a calm and patient manner (and usually gets his way).

I can see that within this child lies an intelligence different to my own but no less valid. I can see also that his path in life will be challenging. Am I afraid of what may happen in the future? Yes, but I am comforted by how gentle people are with him, how they forgive his averted gaze, his nervous rocking, his long speeches. It ignites in me a flame of hope, not that he will be 'normal' but that he will be accepted and loved for who he is, however different.

The Telegraph - 26 February 2006