Philip, the story of my son and his struggles with Autism

This bog is about my son Philip. He has the form of Autism now known as Asberger's Syndrome. He is now an adult, living, if that's what it can be called in a care home in Bradford.

Looking back, I realised just how much we missed out on. Just how much more could have been done to help him, if only there was the level of awareness into the condition that there is today.

Yes. Looking back I remember how it was when he was young. I remember sitting in our kitchen and my son would be standing in a corner looking at the wall. He would stand there for hours. Contemplating some amorphous something of which only he was aware. It was his "place of solitude" when the world became too much for him.

Whatever solace he found in that corner, we never really did find out. I only knew that his corner and wall were his retreats when things were getting a little out of hand for him. Sometimes he would reach out and touch the wall he had been staring at. He would run his hand along it feeling it's smoothness under his touch. It was as if the continuum of smooth and cool compensated for the turmoil of the day to day living that often frightened and confused him.

So the corner was his place of solace. The wall was where he called his own personal 'chaos' to order.

And so it went on. Sometimes, if he had had a particularly bad day, which occasionally arose from an imaginary slight by a school mate, he would bang his head furiously against the wall and we had to pull him away to stop him from hurting himself. It was always a dangerous thing to do, both for him (head banging) and for us trying to tear him away and calm him.

Years earlier when he was a just few years old, the concept of Autism was just that. There were no umbrella terms at that time. No Autistic Spectrum as exists today and there was very little if any treatment.

As a young child he played endlessly with water. Splashing it around in the sink and watching it fly into the air. He got very excited doing this. It was as if he had found that he too could make his mark in the world. That all those crazy perceived situations that left him unable to cope could be exorcised like a ghost, when he turned the taps full on and threw the water around. And it was always followed by Mum doing a mammoth mop up of the soaked bathroom floor! But afterwards he always seemed more relaxed as if his personal demons had been driven out, even if only for a short while.

Alas, this fascination with water turned to a fascination with fire. Now we were in trouble. He had to be watched constantly, for we had visions of the entire house going up in flames.

At the time we were seeing GPs, psychologists, psychiatrists, social workers; the whole shebang. There were diagnoses and counter diagnoses going round. One moment he was Autistic. The next minute he was mentally handicapped (or mentally challenged to be politically correct). Eventually it was decided to put him in a nursery class with "normal" children. If he could match their scholarly milestones, then maybe he would be allowed to stay. But in short, he didn't. And so when he became too old to stay in the nursery class, he was transferred to a school for pupils with learning difficulties.

For the next few years, life for him and us wasn't too bad. He even acquired good reports and 'grades' at one point. As I was doing an Open University degree in psychology at the time, and some of that degree required research and thus quite complex mathematical formulas, I was surprised one day when he looked at a page full of symbols and said "That's a sum isn't it mum?". "Yes, Philip it is" I replied. I was then amazed when his teacher took me to one side and told me that he had developed an interest in arithmetic and he was getting good at it!

But all this was a long time ago and as his years at school were drawing to a close and he was now in his mid teens, his insecurities manifested themselves again and he became increasingly aware that he was 'different'; he was not like the other kids who played outside; who rough and tumbled and called each other names. He knew he could never be a match for them.

In no time he became increasingly paranoid, believing that the children outside were staring at him and calling him names. So he hid from them. Often when in the house, I had to draw the curtains so the kids outside could not "see'' him. At this time he spent hours and hours in his corner looking at the walls. Sometimes I could coax him out. Other times just trying made things worse.

Any eye contact, which had been reserved for myself and his sister, became non existent as he sunk further into his own world and shunned any outside contact. He became unable to look anyone in the eye. It was as if he was afraid of what he might read in another person's eyes. What he might discover in their souls. As if he might see himself reflected back through the mirror of their searching gaze. Gradually, he lost all contact with reality.

My increasing alarm prompted me to do some research into the condition, and gradually I began to find out about the 'different kinds of Autism' and that they all needed their own kind of treatment and handling of the 'client'. (As they were now called). I made a point of trying to educate the professionals, to show them that there were different degrees and different kinds of the condition. I have no doubt that they thought I was a neurotic mother and that I was meddling in things I knew little about and making their job more difficult.

It was only after many years of dreadful trauma, not only for my son but for the whole family, that the medics and "powers that be" conceded that he did indeed have Asperger's Syndrome.

But now there was little they could do to help him. His often bizarre and by now very violent behaviour patterns were ingrained into his personality. It was too late. He was an adult. Suicide attempts began, and time after time he was taken into hospital……

As his behaviour became unmanageable at home, he was put into one care home after another. All of them at first confident that they had the solution to his mental agony. All of them, after only about two weeks (yes) declaring themselves unable to cope with him, and thus he had to move on to yet another home.

Years have gone by and he is now "settled" if that is the correct word. He is as settled as he will probably ever be. He is a little more outgoing now, but the damage done back in his early years can never quite be undone.

He has mellowed, but I know that when things get tough, he stands in a corner and stares at the wall. But certain age brings wisdom, even to those afflicted with this awful condition, and now he knows just a little that the world is not out to hurt him and he can go to the pub with his friends and have an enjoyable time. In his later years he has found some part of himself, to an extent he has come to terms with his personal demons, and so he is not lost for ever any more. He now has a kind of solace. A kind of peace. A kind of life.

We all learn sooner or later that whatever happens to us, whatever rotten cards we are dealt, whatever goes wrong in our lives, we are still survivors. We have to be. We owe it to each other. We are the lucky ones who at least have been given a chance at life and when all the difficulties have been confronted, there is nothing sweeter than just being alive. I think Philip now knows that and makes the best of his limitations.