What helps the siblings of young people with autism spectrum disorder: a theory built on their perspective
Author: Ann-Marie Cryan, Tavistock and Portman NHS trust educational psychology training course
There is a gradually increasing focus on the needs of siblings of young people with Autism Spectrum Disorder. However, much previous research has concentrated on measuring behavioural adjustment within this population and there is limited research available which has captured the sibling's voice or explored their support needs. As a result there is a call at national and local levels for greater understanding of the support needs of siblings of those with Autism Spectrum Disorder (National Institute for Health and Care Excellence, 2013).
This study produces an explanatory theory of the mechanisms and contexts that contribute to helpful support for the siblings of young people with ASD. It is hoped that the findings will increase awareness of the support needs of siblings of young people with ASD and will inform best practice among professionals and families. Interviews were carried out with 7 participants from a Greater London borough between the ages of 9 and 16. The transcripts of these interviews were analysed using a critical realist approach to Grounded Theory. The Grounded Theory indicates that the perspectives of the typically developing young people growing up with a sibling with ASD in this research are represented by the core category of 'the dynamics of sibling relationships'.
These dynamics within the sibling relationship are represented in the categories of 'Social Resources', 'Understanding the sibling with ASD', 'Interests and Activities', and 'Acceptance, Tolerance of Difference or Desire for Change'. This theory suggests that the factors that contribute to helpful support promote understanding and acceptance in the typically developing sibling and facilitate the siblings' ability to communicate and interact with one another.
The implications of the findings for families, schools, local authorities and Educational Psychologists have been discussed in relation to existing literature.