Patient support website launches new autism sections
15 October 2008
Based on interviews carried out by Dr Sara Ryan at the DIPEx Health Experiences Research Group, Department of Primary Care, University of Oxford and guided by an advisory panel of people with the condition, carers and health professionals, users can see, hear and read a wide range of experiences and perspectives on what it is like to have been diagnosed with autism spectrum disorders.
"A lot of these autistic websites are full of fact sheets and information but here you're getting people talking and I'm sitting here laughing because that person's saying exactly what I say about my son and it’s a lot more reassuring than a fact sheet. It comes to life and you sit back and think 'actually I'm not the only one'." Mother of three-year-old newly diagnosed with autism.
This short video features clips from several interviews on the healthtalkonline website.
Life on the Autism Spectrum features the experiences of 20 adults with autism from different backgrounds and locations all over England. People discuss getting a diagnosis, employment, relationships, growing up and negotiating life in a world that is alien to them. This is the first time these voices have been presented in a comprehensive and thorough way.
“I never sort of really felt as though I belonged because I was so very different to my parents and my sister. It sort of made me feel basically like a freak.” Mark.
Parents of Children with Autism features 45 parents who talk about their everyday lives and the highs and lows of life with their children, who are aged between three and 57. Their accounts are open, honest and sometimes humorous. The interviews provide insights into the children’s unique personalities, their likes, dislikes and relationships with siblings and other family members, as well as descriptions of how the parents felt about their children growing older, their diagnoses and education.
“She could write you an essay on the influence of postmodernism in the 20th century or whatever, but she can’t cook herself a meal. She is dyspraxic - she can’t do up her shoelaces, you know she can’t see the muck and mess she lives in and if she does see it, it doesn’t bother her.” Carol Ann, mother of daughter 23.
Both sites have a range of resources, including links to and contact details of more than 200 organisations, support groups and helplines.
Healthtalkonline is aimed at patients, their carers, family and friends, doctors, nurses and other health professionals. To date, the website has covered illnesses including cancer, heart disease, neurological conditions and mental health. DIPEx is funded by the Department of Health and charitable trusts.