Dilemmas for parents concerning the diagnosis of autism spectrum disorders: A qualitative study.

Ginny Russell
Researcher
ESRC Centre for Genomics in Society (Egenis)
University of Exeter, UK


Many children who display autistic behaviours at clinical levels do not receive a formal diagnosis. This study used qualitative methods to examine parental influence in pursuing or avoiding a diagnosis of autism spectrum disorder (ASD). The aim was to explore the function of ASD diagnosis for parents, and examine whether a diagnosis affected how parents perceived ASD. Seventeen parents participated in in-depth semi-structured interviews, which were analysed using a thematic approach. Data analysis revealed dilemmas faced by parents: whether to act to retain the 'normal' status of the child or to 'normalise' the child through diagnosis and subsequent remediation. Parents who had received an ASD diagnosis for their children became proactive in trying to reduce stigmatisation of ASD more widely, and in some cases actively advocating ASD diagnosis to other parents. Thus their actions may make it more likely that others will opt for diagnosis in the future.