Daslne is now officially a teenager!
It is 13 years since the Database of Children with Autism Spectrum disorder Living in the North East registered the first child member in October 2013. The aims are still the same: to gather an accurate picture of the numbers and needs of children with autism spectrum disorder (ASD) in Northumberland, Tyne & Wear; to support development of services; to help empower families through access to information; and to support high quality autism research. Daslne is based at Newcastle University, and I have been the Director since 2003, working with the wonderful Co-ordinator, Mary Johnson (firstname.lastname@example.org). New families can contact Mary or join at www.daslne.org
The Children’s Foundation have supported Daslne throughout. For example, we have organised a big conference every three years since the start, with three quarters of the places reserved for parents of children with ASD. We would not have managed to run the conferences without the expertise, practical support and some financial support from The Children’s Foundation. TCF also found funders so we could redesign the website to look more professional, and for printing of twice-yearly newsletters which are sent to families who prefer to get a paper copy (rather than an email attachment). Their funding also ensures that Mary can keep in close contact with professionals in the 6 local authorities, so that all families of newly diagnosed children hear about Daslne, and that she can spread information to families about local events and opportunities.
As for research studies, last week was quite a circus! In 2006, Daslne contacted families of children aged between 2 and 4 years about a study called the Preschool Autism Communication Trial (PACT). PACT was a carefully designed study of therapy to increase positive interaction through helping parents to understand how to respond to children’s often unusual or minimal attempts at communication. Half the families had the extra therapy over a 12 month period, and all had the usual services available. From 2013, the children were followed up to track their progress at ages between 8 and 11 years. This study was published in The Lancet last week and you may have seen or read some of the media coverage. Here is the Mirror article: http://www.mirror.co.uk/lifestyle/health/first-ever-treatment-autism-leads-9122694 as an example. The study found that the extra therapy made a long-term difference to some of the children, which is very encouraging. Daslne has supported over 50 studies with contacting families, who are very generous with giving their time and knowledge about their children to help increase understanding of autism.
Director of Daslne