Sunday, 12 December 2010

Displaced Person

I don't know what it is like to have Autism. I have a rough idea in my head of what it would be like, that feeling you have when you are on your own in a foreign country, in a busy market place, you can't understand anyone, no one can understand you. The gestures, the word, the sounds, unfamiliar and frightening. You can't make youself be understood no matter how hard you try, you retreat further and further, as things get louder, more confusing, brighter in colour. Yet for you, as a traveller, there is a refuge, your hotel, a bar, or ultimately, returning home.

Imagine being in a place like this permanently. Where things are just out of your reach of understanding. Permanently. Where you know what sort of things work, but you don't know why. There is one thing that helps you make sense of it all. Your dad.

I read this story last night. It seems inconceivable that in 21st Century Britain we can be talking about, what is effectively, forced institutionalisation. This young man has a loving dad, who is the expert in his care, he asked for 3 days respite care, and this has turned into some sort of nightmare, where seemingly, there are no solutions. Because Autism does not fit the Mental Health Act, the authorities have taken it upon themselves to decide what is best for this young man.

My heart breaks for this young man, and his father. He has been separated from his anchor, from the one person who comes anywhere near to understanding and speaking his language, to help him navigate through the complex world he lives in, a  maze of social interaction where opportunities for misunderstanding abound.

In a previous incarnation I worked as a carer for children with special needs, several of my clients were young boys with Autism. One in particular was my favourite, he was feisty, funny and caring. He liked nothing more than to take his clothes off and run around, becoming more and more manic and excited the closer you got to putting his top on! He loved to swing, and to slide, and to smile and laugh. He also had "behaviour problems". I hate that term, but can't think of a better one. This young lad had had a procession of carers who couldn't cope, but I never found him a problem, and couldn't really see what the issues were, yes, he could be challenging, but I found if I took a step back and gave him space, there was nothing we couldn't over come.

One particular afternoon this young lad's father was busy in the kitchen, and he asked me to supervise the lad's play in the front room. He took us in and shut the door. Within 5 minutes there was frantic screaming and yelling. Me. I had never been so terrified in my life, and I couldn't, despite my best efforts, calm down. I was hysterical.

Dad rushed in, my little client was holding my hand, patting me, trying to calm  me down.

"What has he done? Let me get the accident report form". Dad looked resigned to another carer leaving them.

"No no, look look", the little lad said, pointing to three pteradactyl's perched on the curtain rail.

"Yes" I said, rather ashamed, "Your little boy is delightful, but would you please cage these birds!"

This was a turning point in my relationship with this special little guy. He had recognised my fear, an abiding and life long fear of indoor birds, and was right by my side, comforting me, caring for me, until someone who could deal with the problem arrived. And after this experience, we were a team!

People with autism, or ASD (autism spectrum disorder) need what we all need. Consistency, respect, regard and most importantly love.

Stephen has been separated from the one person who is best equipped to give him all this.

Please don't let this happen. Sign the petition. Blog. Tweet. Raise awareness. Bring Stephen Home.

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