Paper long abstract:

When the health and development of a child is identified as being somehow different, paediatric genetics may become one source of new narratives of explanation. Crisis, if framed as an extreme unsettling of previous understandings and narratives of identity, may be felt at any point in the process around seeking and / or obtaining a diagnosis, and dealing with the consequences. This paper concentrates on the rarely explored perspectives of the children themselves. Do children perceive diagnosis (whether established or not) as crisis? How do they experience primarily medical attempts to define key aspects of themselves? How does this enrich our understanding of processes medical othering? These are some of the questions being explored through ongoing ethnographic fieldwork with families in the UK . We propose that, while medical authority is significant to the meanings generated by formal diagnostic processes, children and young people are likely to present alternative and often surprising accounts of their own lifeworlds that may not sit easily with existing adult-orientated assumptions.