Scotland publishes 'benchmark' for care of autistic children
EDINBURGH, Scotland: Guidelines setting out a "benchmark" for the care of children with autism in Scotland have been published. It is the first time in the United Kingdom that clinicians, parents and carers have drawn up the evidence-based standards.
About 7,500 children and teenagers in Scotland are thought to have some form of autistic spectrum disorder (ASD).
Those behind the guidelines said they would help parents who had until now been faced with information which could be contradictory or even misleading.
The guidelines, developed by the Scottish Intercollegiate Guidelines Network (Sign), aim to provide a road map of best practice and tried-and-tested treatments.
They recommend improvements to the diagnosis and assessment of children with ASD. However, the authors warned that more research was needed if parents were not to be attracted by the "misleading hype" around possible causes and controversial forms of treatment.
Alison Leask, who chairs Autism Argyll, was a member of the guideline development group.
She said: "Until today, any parent or carer trying to get the best treatment for their child had a huge challenge simply deciding what was credible. There is an enormous volume of information out there, much of it contradictory, some of it downright misleading. From today, they have a guideline for care in which they can have confidence."
Leask said the advice provided a benchmark which parents could trust. "That will be enormously valuable in cutting through the mass of misleading advice that can cloud the care of a child with ASD," she added.
The authors said they were unable to say whether therapies such as Cognitive Behavioural Therapy were of benefit.
They added that a lack of "robust, transparent evidence" meant they could not comment on whether there was a link between ASD and gluten, casein or heavy metals.
Dr Iain McClure, the group's chairman, said: "Every clinician, parent and carer wants to find an answer to autism, and almost every week we read another story of possible treatments or cures. It is deeply frustrating to watch as parents' hopes are raised time and time again, only to see them dashed as we discover that claim after claim simply isn't backed up by the evidence."
He said the research community needed to "take up the challenge" and answer questions about whether these treatments worked.
When Alison Leask first heard one of her relatives had autism, she went straight on to the Internet to research the condition. Of the five million sites she found discussing the disorder, 97,000 described a cure. Three years later, she found 46 million sites on the disorder and five million on a cure.
Now, in an effort to help the relatives of those with the condition deal with the baffling amount of often conflicting information, the NHS in Scotland has drawn up the guidelines for the care children with(ASD) should receive.
NHS QIS Scotland - the national clinical effectiveness body - carried out the most extensive assessment yet of the methods available to diagnose and treat ASD, from fatty acids to swimming with dolphins. The resulting 67-page document is intended to help doctors better diagnose and treat the condition.
Dr McClure, who brought together the guidelines through consultation with medical staff, patients groups and autistic children, said doctors and patients needed to know which theories to trust.
Charities and support groups including the Scottish Society for Autism and the Scottish Centre for Autism took part in the study. But others feel that the NHS has dismissed alternative treatments too readily.
Bill Welsh, chairman of the Action Against Autism, insisted that nutritional and behavioural therapy was working.
However, as the chairwoman of Autism Argyll, Leask said the guidelines were a welcome relief for thousands of people.
(Sources: BBC News Online, The Scotsman, June 28, 2007)
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