Man-child’s trials and tribulations

ONLY those closest to someone with autism can ever know what it is really like. The insidious nature of the condition prevents the sufferer from understanding it least of all.

Broadcaster and writer Liam Nolan has written a searingly honest, loving and, at times, heartbreaking account of his son, Liamy's autism. Liam wrote a diary during one week in August when he and his wife Oonagh's 10-year-old autistic son came home for his holidays from the institution where he was placed in full-time care.

It is an account in which pain and laughter, happiness and despair come together in a disquieting mix through which a strange and lovely child strides and screams, locked into his own unreachable world.

The following is an extract from Once In August Long Ago.

I looked up the word "autism" again the other day. "A very strange disorder of the mind, beginning in childhood," it said, "and (unless treated) persisting into adult life."

Unless treated.

I know that Liamy has been physically mistreated at least once. But medically "treated"? I wonder. Over the years he has been given an uncomputable number of pills and injections. They provided surface solutions, small behavioural changes.

He has been controlled, but controlling someone isn't the same as treating him. He has been given cocktails of drugs for so long now that only God knows what they've done to his mind, to his organs, and to his metabolism. He never got better. At times he got worse.

I looked up the word "drug," too.

"In non-technical language," it said, "drug has come to suggest a narcotic or habit-forming substance. In the technical sense, a drug is any substance taken medicinally to help recovery from sickness or relieve symptoms, or to modify any natural process in the body."

Not one of the drugs Liam has been given over the long years has ever helped him to recover from the condition called autism.

But they have, from time to time, given him the doped, heavy-eyed, dribbling look of someone who has spiralled downwards, at times to an almost vegetable state. All in the cause of calming him, tranquillising him, sedating him, suppressing his hyper-activity, lengthening the intervals between the seizures he gets from the epilepsy he developed around the age of 16, quieting the repetitive shouted demands, the endless repetition of the same questions, the isolated primordial screams and shouts. In October of the year in which this is being written, he is on epilin, cogentin, lamictal, valium, tegretol, and laractil. He is also on lithium.

Where once he was a golden child, handsome and normal-looking, now his features have coarsened, his hair is growing grey.

Some of his teeth have changed shape from grinding, or perhaps falling down in seizures, and he has had four extractions.

That's another thing you never know when he is in pain, has a toothache, a headache, an earache. He doesn't know how to tell you.

His hands and arms are criss-crossed with scars from the times he has smashed windows.

In his bad periods (and neither we nor the medical practitioners who check him out can tell what brings them on), he destroys his clothing, rips the strongest jeans to shreds, pulls the buttons off shirts and pyjamas (and swallows those same buttons regardless of size or quantity), tears his T-shirts and sweatshirts and pullovers, hauls curtains off their rails, and dumps the lot out in the rain, along with his own and anyone else's bedding that he can lay hold of.

He'll go through stages during which he will sometimes lie in his bed and apparently deliberately soil himself and then shout, "Oh, I'm wet!" or "I'm soiled!"

Liamy has been in and out of Lourdes Hospital in Drogheda dozens of times to have his head stitched, the skin around his eyes stitched, his hands and arms stitched, blood tests taken.

He has cauliflower ears now from a beating he was given by someone who was never formally identified for us.

I photographed the weals (dark smudged blue, and red and yellow) that ran in shocking diagonals across his back. I found them by accident on a Sunday morning when I was undressing him at home to give him a bath.

I couldn't help weeping.

Then I became consumed by rage, wanted to maim the bastard who had done this to Liam. I wanted to hold Liam, cuddle him, comfort him, this man-child standing there in the bath mute and uncomprehending.

I dreaded telling Oonagh, but I had to. I will never forget the look that came across her face, her horrified eyes filling, her hand going to her mouth to stifle whatever sound tried to tear itself from her throat. Liamy couldn't tell us anything about the beating. He can't converse. His facial expression never changed when I touched those terrible marks, and put my fingertips to his disfigured, discoloured, swollen ears.

Once in August Long Ago: A Week in the Life of an Autistic Boy by Liam Nolan is published on March 11 by Greylake Publications @ €14.