by Ted Jones

Created on: November 15, 2008

LIVING WITH AUTISM

This too I know and wise were it
If each could know the same

That every prison that men build

Is built with bricks of shame

(Oscar Wilde, The Ballad of Reading Gaol)

I don't know what Oscar had to complain about he was only inside for two years. We are in year 50 of a life sentence. No appeal, no parole, no remission for good conduct. It's not a well-known prison - it is not called San Quentin, Alcatraz or even Reading. It is called Autism.

Autism: a lifelong disability that affects the way persons communicate with and relate to people around them. (National Autistic Society.)

No, I am not autistic my son is. Real prisoners - like Oscar Wilde - know when they're coming out. But here in this mirror world, in which we are the prisoners and he the jailer, there is no counting off the days until release: no dream of a miracle cure.

Autism was first identified in 1943, but it can take time for doctors to catch on to new stuff. Our doctor's diagnosis of Bobbie's symptoms was: I'm sorry, Mrs. B, your child is naughty. Naughty babies are not my job.' That was in 1956. And of course we believed him. You did in those days doctors were always right. When my baby cried - which was what he did when he wasn't asleep - I wanted to shout to the people around me Look I'm sorry, I can't do anything, but it's OK - Dr. Thompson says he'll grow out of it.'

Autism affects about 0.004% of children, and usually appears in the first three years of life. (NAS)

When he was eventually diagnosed, and it was obvious that he would need special care, we were reluctant to send him to an autistic' institution - a whole community of mentally handicapped kids. Then we heard about a centre in Scotland where children with different disabilities lived together, so that the blind, the lame, and the mentally disturbed could use their functioning skills to help each other. In principle it seemed a good idea.

As it was too far to go to see him often, we spent our weekends running a bring-and-buy stall in the local market to raise money for the school. But we missed Bobbie so much that we eventually decided to go and work there full-time.

We sold our home, left our jobs, and went to live in Scotland. We thought that not only would we be nearer to him, but that we would be able to help the other handicapped kids. It didn't work out quite that way. The head master didn't care much for running the school: he was a serial conference-attendee who liked to get away, and so spent most of his time at

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