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More autism support needed, say York researchers
7:40am Thursday 10th November 2011 in News
MORE support is needed for adult siblings of people with autism, say researchers in York.
The team from the University of York has highlighted the need for greater awareness of issues faced by siblings of people with autism plus a learning disability.
An 18-month study, by the university’s Department of Health Sciences, explored their experiences and identified their needs, and found that the significance of sibling relationships – often characterised by strong feelings and loyalties – had generally been overlooked, with little support available.
Dr Rosemary Tozer, of the Department of Health Sciences, said the experiences and views of adult siblings, “not considered in practice”, could make a valuable contribution when developing policy and services.
She said: “Not enough practical and emotional support is provided to parents and siblings on how to manage a child’s autism.
“We are recommending this support should be provided as a matter of course, not just in a crisis.”
The study interviewed 21 adult siblings, aged between 25 and 67, about their past and current sibling relationship, and their hopes and fears for the future.
It also involved 12 of the siblings’ brothers or sisters with autism and a learning disability, most of whom were in residential homes or supported living.
In addition, 11 professionals, including key workers, house and care managers, nominated by the siblings, were interviewed.
Dr Tozer said siblings could offer an important, supportive, long-term relationship, especially for those who had difficulties in communication and social understanding, and whose social contacts were often limited to paid staff.
All siblings interviewed commented on a lack of advice for their family from professionals about how to deal with autistic behaviours.
Many mentioned the difficulties associated with late diagnosis of autism.
Disruption to family activities, worries about stressed parents and lack of understanding from peers and other relatives dominated many accounts.
Dr Tozer said: “They [siblings] are also likely to have had extra caring roles while growing up, perhaps leading to mixed feelings about how much they can contribute to the support of their sibling in adulthood.
“Most siblings described close relationships with their brother or sister with autism.
“This was evidenced by a shared history and understanding, use of humour, gesture and effective communication.
“Siblings described the love and protectiveness they felt for their brother and sister as well as sadness at the lack of reciprocity and limitations of communication in their relationship,” she said.
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