First Published Saturday, 25 October 2008
Fwd:
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.
To access the site, or to share your own personal health experience, go
to: http://www.healthtalkonline.org/
January 7th, 2011 at 8:51 pm
This is just awesome! Thanks for the share.
January 7th, 2011 at 10:28 pm
I was reffered to this site by on of my readers and they were correct. Great Find!