The Children’s Foundation supports World Autism Awareness Week
Often the world to an autistic child can seem overwhelming; they may wonder why they are ‘different’ and why people don’t understand them. Autism is a lifelong condition that is estimated to affect 1 in 100 individuals. Families living with children with autism can find life challenging. They may have to face emotional, physical and financial strain whilst feeling judged, excluded and isolated by society. They strive for the best for their child and family; they may have to fight for a diagnosis, adequate support, effective schooling and guidance but this can be very difficult to achieve. Each family experience is different, yet as the mum of a 15 year old boy with Asperger Syndrome describes below, it can be frightening and bewildering:
“I think I had perhaps always known from an early age that there was something I could not put my finger on, yet he was my first child and perhaps I was just an over anxious mother. Looking back there were certainly subtle clues that my child was different. Our first outing in the snow didn’t turn out as planned and we returned home with a screaming child, a weepy mum and a bewildered dad; and then there were the birthday parties which were always cut short or spent in a quiet corner away from other children.
Certainly the arrival of a second child confirmed that my child was not the same, but I had never uttered the word ‘autism’ to anyone, not even my husband. It was no surprise that after a number of assessments with the local pediatrician we were given a diagnosis of Asperger Syndrome. The diagnosis was given on his first day of school nursery and having had the appointment in the morning I took him in to his first school that afternoon with a huge range of emotions. Understanding Autism was a relief as I now realised my child’s behaviour, picky eating and intolerance of certain situations was not due to my parenting skills but that it was a scary world for him and I needed to support him as much as I could.”
In 2003 it was recognised that within the North East there was no overall picture of the numbers and needs of children with ASD, and limited co-ordination of how children and young people with autism were supported. The provision of services was patchy and frequently caused confusion and unnecessary distress to the families. The Daslne project (Database of Children with Autism Spectrum Disorder Living in the North East) was established to create a central hub in which families could access information but could also link with other families. An important element of the creation of this virtual community was the opportunity for families to take part in research, with the aim that in future the range of interventions and methods of support would effectively meet the needs of children with ASD.
Professor Helen McConachie, Director of Daslne, said “Daslne has grown and grown with the enthusiastic support of families of children with ASD in the North East, and with the efforts of professionals letting families know about the project. The accurate information about numbers of children is a resource for local authorities and voluntary organisations, and we are proud of our networking to exchange information about autism linking families across the North East.”
Now in its 13th year the Daslne community has grown to over 1,600 families, who all benefit from the web resources, newsletters, fact sheets, participation groups and conferences and have contributed to research that is now published internationally. Just last week, the latest academic paper received wide coverage in the media, showing that the average age of diagnosis of ASD in the UK has not reduced over the past decade (http://link.springer.com/article/10.1007/s10803-016-2716-6).
Nicola Crawford, Director of Operations for The Children’s Foundation said “We are very proud to support the work of Daslne and assist with the growth and development of the project to ensure it continues to have an impact on families both locally and nationally. However we need the public to support us to generate the income needed to sustain this vital project. Most of us will be aware of a child, young person or family that is affected by autism. During World Autism Awareness Week I ask you to do something incredible; please support your fellow parents, carers and young people by donating to our Daslne fund. Text ‘DASL23’ and your amount to 70070 to donate or there are other fun ways you can support the project please go to www.thechildrensfoundation.co.uk for details of how to get involved. “