03-10-2006, 01:10 AM
Parents of children diagnosed with Autism Spectrum Disorder (ASD) are working with a pioneering North East database designed to help improve the support services available to them.
The project, known as Daslne (Database of Children with Autism Spectrum Disorder living in the North East) was launched in October 2003. The research team, led by Dr Helen McConachie, a senior lecturer in Clinical Psychology in the School of Clinical Medical Sciences at Newcastle University, has been encouraged by the numbers of parents who have already registered with the database. However, more are needed.
'As with any survey, we know there will be a proportion of people who might not want to take part, and others who simply don't get around to it because they have busy lives', says Dr McConachie.
'The database has gone very well so far, but in order for it to give us a true picture of the prevalence of ASD in the North East, we really need every parent of a child diagnosed as having ASD to register with the database', she added.
The Daslne project, which is currently running in six North East local authorities in Tyne and Wear and Northumberland, is the only one of its kind in the UK. It was established to try to provide local authorities and parents with accurate reports, so for example, they know how many children with ASD are in mainstream school.
Parents can also reports on the numbers of children and their geographical locations. All the data are kept completely confidential on a stand-along computer.
'Access to detailed information, such as how many children are likely to need play schemes during school holidays, is crucial in enabling voluntary organisations and social services to plan ahead', says Dr McConachie. 'The database is helping us to ensure that we are able to identify numbers of children that need extra help, so that services for families affected by ASD are provided consistently across the North East'.
The database also gives the Daslne team the ability to track changes in the number of children with ASD, and their needs.
'Most current research is based upon children at a particular school or clinic', says Dr McConachie, 'but the Daslne project enables us to undertake research which is much more widely representative of the population of the North East'.
A one day conference on 20 March will share the lessons learned in setting up this unique collaborative database, and will also include a presentation of the first sets of findings about North East children with autism spectrum disorder.
From ncl.ac.uk
The project, known as Daslne (Database of Children with Autism Spectrum Disorder living in the North East) was launched in October 2003. The research team, led by Dr Helen McConachie, a senior lecturer in Clinical Psychology in the School of Clinical Medical Sciences at Newcastle University, has been encouraged by the numbers of parents who have already registered with the database. However, more are needed.
'As with any survey, we know there will be a proportion of people who might not want to take part, and others who simply don't get around to it because they have busy lives', says Dr McConachie.
'The database has gone very well so far, but in order for it to give us a true picture of the prevalence of ASD in the North East, we really need every parent of a child diagnosed as having ASD to register with the database', she added.
The Daslne project, which is currently running in six North East local authorities in Tyne and Wear and Northumberland, is the only one of its kind in the UK. It was established to try to provide local authorities and parents with accurate reports, so for example, they know how many children with ASD are in mainstream school.
Parents can also reports on the numbers of children and their geographical locations. All the data are kept completely confidential on a stand-along computer.
'Access to detailed information, such as how many children are likely to need play schemes during school holidays, is crucial in enabling voluntary organisations and social services to plan ahead', says Dr McConachie. 'The database is helping us to ensure that we are able to identify numbers of children that need extra help, so that services for families affected by ASD are provided consistently across the North East'.
The database also gives the Daslne team the ability to track changes in the number of children with ASD, and their needs.
'Most current research is based upon children at a particular school or clinic', says Dr McConachie, 'but the Daslne project enables us to undertake research which is much more widely representative of the population of the North East'.
A one day conference on 20 March will share the lessons learned in setting up this unique collaborative database, and will also include a presentation of the first sets of findings about North East children with autism spectrum disorder.
From ncl.ac.uk
