Gradual realisation that all is not well

19th July 1996 at 01:00
Legislation on special needs is discriminating against children with autism. Josephine Gardiner reports.

Simon Keeling was born eight weeks premature three-and-a-half years ago in Mansfield, Nottinghamshire. His mother, Jane, a district nurse, noticed that something wasn't quite right long before the doctors did.

Jane and her husband Gary have two older children, both normal, so they were able to make comparisons. At first, she says, the doctors thought Simon was deaf; when this was ruled out, a paediatrician told them that Simon's development was normal because he was able to build a tower with bricks. At two he was referred for speech therapy, because he had ceased to use the few words he had formed.

"It was at these sessions I realised there was something dramatically wrong; the other children there had communication problems, but they played imaginative games together. Simon just crawled round as if the other children weren't there."

He was finally diagnosed autistic at three, last February - which makes him one of the lucky ones - according to the Autistic Society the average age for diagnosis is just over four years. "For a few days we were elated - at last we had a label. But after that you go through a grieving process, realising that autism is a lifelong thing and he will never be normal. Also, we expected that people would come to us to explain the situation and what was available, but nobody did. I read loads of books about autism; all of them said that getting early help was essential before the behaviour patterns get locked in."

They found him a place in a family-centre nursery, but the staff had no idea how to cope with him. Simon now has a place at Yeoman Park school for children with severe learning difficulties.

Luckily for him, one of the teachers there is an expert in autism and Simon's parents are delighted with his progress. Jane Keeling is keenly aware that other parents are not so fortunate: "As a district nurse, and with my husband working for the local authority, we knew what buttons to press. Even so, we had to do all the finding out and battling ourselves." She was amazed at the degree of ignorance among professionals, describing how she once ran into a GP who asked her to explain what autism was.

Nottinghamshire's policy is to place autistic children in mainstream or other special schools . "What's worrying is that 'mainstream support' often just means the presence of a nursery nurse."

Jane admits that Simon's demands have placed a strain on the two older children, but this is easing now that Simon is beginning to confound the autistic stereotype and show affection for others."Now that we know he's getting proper help, we can relax a bit and accept him for what he is."

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