13th October 2008
Experiences of Autism
A new resource on healthtalkonline.org
The award winning website – healthtalkonline.org – is launching two new sections on experiences of autism; Life on the Autism Spectrum and Parents of Children with Autism. The new sections are based on interviews carried out by the DIPEx Research Group at the University of Oxford, guided by an advisory panel of people with the condition, carers and health professionals. Through these interviews, you can see, hear and read a wide range of experiences and perspectives on what it is like to live with autism spectrum disorders.
Life on the Autism Spectrum features the experiences of twenty adults with autism, and, in some cases, their partners. The interviews, carried out with people from different backgrounds and locations throughout England, cover diverse experiences across the autism spectrum and represent the first time their voices have been presented in a comprehensive and thorough way. People discuss getting a diagnosis, employment, relationships, growing up and negotiating life in a world that is alien to them:
“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
“It was probably the best day of our lives when me and my mother got the diagnosis because she had struggled for 35 years with me and was never given any help or support. She described it as a lonely journey for her sometimes. And we actually went out to the pictures that night to celebrate.” Debbie
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 fifty-seven years. Their accounts are open, honest and sometimes humorous. The interviews provide insights into their 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.
“These are all individuals that look apparently normal. It’s the behaviour and the way they present themselves that is regarded as being odd.” Ciaran, father of 21-year old son
“She could write you an essay on the Influence of Postmodernism in the Twentieth 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 23-year old daughter
“I will be eternally grateful to one senior, very experienced neurologist, who wrote in his report something to the effect of yes, my child had very severe developmental delays but he couldn’t predict the future; sometimes these children could surprise you. That one small comment made a big difference to me.” Catherine, mother of two daughters aged seventeen and fourteen
In both sections, you will find a range of resources, including links to and contact details of over 200 organisations, support groups and help lines.
DIPEx is grateful to the Wellcome Trust who funded these two sections on autism.
Helping one another…there when you need it.
ABOUT DIPEx
DIPEx, a registered charity no. 1087019, has created two websites –
www.healthtalkonline.org and
www.youthhealthtalk.org – of people’s experiences of almost 50 different illnesses and health conditions. The websites are aimed patients, their carers, family and friends, doctors, nurses and other health professionals and are based on in-depth qualitative research carried out by the DIPEx Research Group at the University of Oxford.
Users of our websites will find accounts – presented through video, audio and written material – which resonate with their own perspectives and experiences of issues such as reaction to diagnosis, consultation with their doctor, effect on work, social life and relationships, decisions on treatment options and side-effects of treatments. The questions that patients want answered are identified in the interviews with patients and summarised on our websites.
To date, we have covered illnesses including cancer, heart disease, neurological conditions (Parkinson’s, epilepsy and autism) chronic health issues (HIV, diabetes, rheumatoid arthritis) and mental health. We also provide experiences of women’s health (pregnancy, breastfeeding, antenatal screening) and publish young people’s experiences (including epilepsy, sexual health, teenage cancer) on our dedicated website – youthhealthtalk.org.
DIPEx is funded by the Department of Health and charitable trusts. Full details are on our websites.
For more information contact:
Dr Ann McPherson, Medical Director
Francie Smee
Phone: 01865 289328
DIPEx Charity
PO Box 428
Witney, Oxfordshire OX28 9EU
Phone: 01865 289328
Fax: 01865 289287