Dilemmas, diagnosis and de-stigmatization: parental perspectives on the diagnosis of autism spectrum disorders.
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 analyzed using thematic and grounded theory approaches. Data analysis revealed dilemmas faced by parents: whether to act to retain the 'normal' status of the child or to 'normalize' the child through diagnosis and subsequent remediation. Parents who had received an ASD diagnosis for their children became proactive in trying to reduce stigmatization 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.
ESRC Centre for Genomics in Society (Egenis), University of Exeter, UK. g.russell@ex.ac.uk
Ginny
G
Russell
Brahm
B
Norwich
D000293:Adolescent; D002648:Child; D002659:Child Development Disorders, Pervasive / Q000175:diagnosis*; D002675:Child, Preschool; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D010290:Parents / Q000523:psychology*; D036301:Qualitative Research; D013240:Stereotyping