UK Charity, Research Autism, has just given the green light to a ground-breaking study by psychologists at Keele University, with a projected cost of nearly £45,000, which will hope to explore some of the severe sleep related issues that children with autism experience. Sleep was first reported by parents to the charity in 2004, as one of the major problem areas that they, and individuals with autism faced.
The prevalence of autistic spectrum disorders (ASD) is approximately 1 in 100, making the disability one of the more common childhood conditions, and one which persists throughout life. There are estimated to be over 500,000 individuals with ASD in the UK. Children with ASD are thought to be at particularly high risk of developing sleep disorders. These are often difficult to manage with a hugely debilitating impact on both the individuals and the families affected.
Over time a sleep disorder can become entrenched and increasingly severe. Case histories show examples where some children going for days without sleeping, or may sleep for only one or two hours per night. There are also examples of some adolescents and adults becoming nocturnal. In response to these reports Research Autism initially held a forum to bring together parents, health professionals and researchers. Arising out of this was a number of initiatives involving: Guys Hospital, London, the Pasteur Institute in Paris and now the University of Keele.
Richard Mills, Research Director at Research Autism said:
"Research Autism identified that there was an urgent need for a programme of research to investigate sleep disorder in autisms, their prevalence, associated risks factors and appropriate ways of helping those affected. As part of a range of initiatives, a leading research team consisting of a developmental psychologist (Dr Claire Fox), a health psychologist (Professor Michael Murray) and a neuropsychologist (Dr Nicky Edelstyn) will thoroughly examine current research regarding sleep disorders and how these relate to autistic conditions. This will result in a comprehensive database that will include prevalence; the main risk factors; sleep characteristics; how sleep problems affect daytime behaviour; the effects on the children and families and details of different types of interventions designed to improve the quality of sleep.
"It is thought that some sleep problems may have a genetic basis and that children do not develop regular sleep patterns due to the faulty development of the circadian rhythm. Sleep interventions currently under investigation include the use of the hormone melatonin and behavioural and sensory approaches, including the use of weighted blankets. With this new project we will have an online Sleep Database of valuable information reflecting international research. This in turn will inform parents, health professionals and other researchers, via our website."
Geoffrey Maddrell, Chairman of Research Autism said:
"Once developed, the sleep database will be of enormous benefit to many people. For researchers it will provide a greater understanding of the character and prevalence of the disorder; aid in the development of hypotheses for more targeted neuropsychological and behavioural research; and assist in the development of a screening tool for identifying those most at risk. And for professionals and family members it will provide invaluable information on appropriate interventions. The sleep database illustrates exactly what Research Autism is all about; we identify the problem with the aid of the people affected; then develop and evaluate interventions, where none exist; and finally we disseminate the information widely, aiming to greatly improve the quality of life of the thousands of children and adults with autism."
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Bernard Fleming, Information Manager, Tel. 020 3490 3091, email firstname.lastname@example.org
Research Autism is the only UK charity dedicated to the production of quality, trusted information on autism treatments and other approaches. Its Information Centre is informed by world experts and accredited by the NHS Information Standard, an independent kite-mark of reliability and quality. It guides people through the minefield of interventions on offer, allowing them to make informed decisions based on impartial, factual information, including risks and hazards. Its research programme is derived from the priorities of autistic people and families and addresses areas that affect everyday life.