A new review, released on World Autism Awareness Day (Weds), has identified concerning gaps in research and support for brothers and sisters of disabled people.
UK charity Sibs, for siblings of disabled people, has worked with the University of Warwick to produce the review, Children and adolescents who are the siblings of children with intellectual disabilities or autism: Research evidence.
The review, authored by Professor Richard Hastings, Cerebra Chair of Family Research at the University of Warwick, has heightened calls for more research to better identify siblings who are at risk and may need support.
The review highlights two groups of siblings in particular that need urgent attention: siblings whose brothers and sisters have high levels of behavioural problems, and young carers that care for siblings with a health or disability need.
This research evidence review follows a recent large-scale study in the USA1, which identified siblings of disabled children were almost three times more likely to have significant problems in interpersonal relationships, psychological well-being, school performance and use of leisure time compared to other siblings.
Professor Richard Hastings, Cerebra Chair of Family Research at the University of Warwick, says: "It is important to emphasise that the majority of siblings of children with learning disability or autism do not have psychological adjustment problems. However, these children do seem to be at increased risk for having a variety of problems. Professionals and health, education, and social care services must consider how to better support siblings' needs."
Monica McCaffrey, Chief Executive of Sibs, says: "Support and understanding for siblings of disabled people is currently an invisible issue in the UK. Too often, the voice of these siblings is woefully neglected in policy, funding and in the public conscience. This much-needed evidence review amplifies the need for further attention into this area to ensure we can support more siblings and their families from childhood to adulthood."
The research review highlights siblings' experiences in school is an area that deserves further exploration because of the potential barriers to learning affecting attainment and progress. This is the focus of Sibs' current campaign to get schools to identify their pupils who are siblings of disabled children so they can take action to remove or reduce these barriers.
The research review also states there is a need to understand the impact of positive aspects on sibling outcomes, and to ensure the views of children and young people with a disability are taken into account.
In the UK, there are over half a million children and young people who are growing up with a brother or sister who is disabled or has a life-long serious illness. Yet too often many of these children are either not identified as siblings or have their needs overlooked leading to isolation and difficulties reaching their potential.
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The review is available online: sibs.org.uk/sites/default/files/Young-siblings-research-evidence-review-March-2014.pdf