Adult siblings - autism research

'Siblings of people with autism and learning disabilities: their current and future support needs'

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.

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 autistic brother or sister 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.

Sibs is collaborating with the University of York to disseminate the findings and to look at how service providers can support this group of adult siblings. Rosemary Tozer, Research Fellow, Department of Health Sciences, University of York, will present the findings of the research at Sibs workshops in Nottingham and The West Midlands. For dates and locations see Events