MRC Seminar - Siblings of people with autism and learning disabilities

Thursday 12 May 2011, 9.30AM to 12.45pm

Speaker(s): Rosemary Tozer, Research Fellow, Department of Health Sciences, University of York; Monica McCaffrey, Director, Sibs; Professor Karl Atkin, Department of Health Sciences, University of York

Booking is required to attend this event.

This seminar is open to practitioners from both adults and children’s services, as well as health partners and voluntary organisations. Whilst the research being disseminated looks specifically at adult siblings, the seminar will be of interest to those working with siblings across the lifespan, and especially those working in transitions teams.

Relationships between siblings are the longest we have and are characterised by mixed, sometimes conflicting, emotions.  Within families where a child has a severe disability such as autism, such relationships are complicated by the extra care and attention that child needs, and the idiosyncrasies of their behaviours, communication and understanding.

Awareness of the impact on children growing up with a brother or sister with autism has increased in recent decades.  However siblings often become invisible to services once they have left the family home. A recently completed qualitative research study at the University of York, has explored the continuing impact, current involvement and future concerns for adult siblings.

Twenty one adult siblings took part in interviews in which they reflected on their experiences growing up, and on current and future issues; twelve of their brothers and sisters with autism also took part in the research, as did a range of professionals. The research team are collaborating with Sibs, the UK charity for people who grow up with a disabled brother or sister, in many of their dissemination activities.

Key findings from the research include:

  • The impact of a ‘chaotic’ family life and a substantial caring role when young had affected adult lives
  • The reporting of close ties with their brother or sister with autism based on a shared history and individualised communication, but sadness at the lack of reciprocity and the limitations of their brother or sister’s adult life
  • The challenges of wanting to play an active role in their brother or sister’s life whilst meeting their other commitments and have a life of their own
  • Professionals often saw siblings primarily as a potential resource, although some providers worked to involve all family members and also saw the value of ‘circles of support’ in supporting siblings. 

In this seminar, delegates will hear the full findings from this research study, and have the opportunity to ask the research team questions. There will also be smaller group discussions designed to offer practitioners the chance to reflect on what they have heard, and begin to consider how they and their organisations can develop effective responses through the services they deliver.

Location: Innovation Centre, York Science Park

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