Family welcomes moves to speed up diagnosis of autism
16 May 2007
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| Mike and Lesley Payne |
A MOTHER whose son struggled through his early life with undiagnosed Aspeger's syndrome is welcoming strides towards early intervention for other sufferers.
Lesley Payne, of Howard Drive in Letchworth GC, grappled with her son's behaviour for 23 years, before he was finally diagnosed with Asperger's syndrome in 2005.
Asperger's syndrome is a pervasive developmental disorder on the autistic spectrum and typically affects social and communication skills.
Now Research Autism - a charity dedicated to research into autism interventions - has launched a website listing more than 35 interventions and detailing the research undertaken to support them. Each is graded for its potential effectiveness.
Mrs Payne, who did not want her son to be named, said: "As a toddler he was developing more slowly than other children of his age.
"Between the ages of two and four he started biting other children but there was never any suggestion that it was anything other than bullying.
"He was late developing language and his motor co-ordination was poor but no doctor in the UK could tell us why he was like this."
In 1983 the family moved to Germany where a doctor recommended holding therapy - forced holding until the child stops resisting or until a fixed time period has elapsed.
The doctor mentioned it was an intervention for autism but said he did not believe Lesley's son had an autistic spectrum disorder. This was the first time Lesley had even heard of autism.
She said: "Holding therapy was one of the most traumatic experiences for both of us. After the second course of therapy he lay still for more than two hours and was clearly disturbed by the treatment. I didn't know what to expect and was shocked by what went on."
The family came back to the UK and the problems continued.
It was not until her son was 22 that autism was mentioned directly, as a result of a nurse friend who recognised the symptoms.
In 2003 his condition deteriorated dramatically when his brother died suddenly when swimming.
He was eventually sectioned for his own safety and is currently being cared for at Lister Hospital.
Lesley said: "Despite the struggle he has done very well, gaining 9 GCSEs and holding down two jobs before he had his breakdown."
Lesley had to educate herself about autism and interventions as there was little information available.
Despite an estimated 500,000 people in the UK alone living with a condition on the autism spectrum, there has never before been a central resource for parents, the medical community or people with autism to find information about properly researched interventions.
Geoffrey Maddrell, chairman of Research Autism, said: "In the past, finding information about the range of interventions available was often a matter of chance and sometimes rumour.
"The website should prove invaluable for the thousands who previously had nowhere to turn for information."
Lesley said: "It's really nice to have a centralised, objective website of interventions available. Hopefully others will be spared from the false claims of those who take advantage of parents desperate to try anything."
For more information about autism spectrum disorders and interventions, visit www.researchautism.net
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