How parents understand their daughters behaviour before they receive a diagnosis of an autism spectrum condition

• Main Author: Kseib, Natalie
• Other Authors: Gleeson, Kate ; Williams, Emma
• Published: University of Surrey 2018
• Subjects: 150
• Online Access: https://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.759543

Introduction: Prevalence studies show that fewer girls are diagnosed with Autism Spectrum Conditions (ASCs) than boys. This difference is particularly marked where there is no cognitive impairment. Some suggest that ASCs present differently between males and females, perhaps leading to delayed diagnosis in girls. A review of the literature exploring sex/gender differences found that many studies have measured the severity of ASC symptoms rather than the quality of difference. Limited research has considered the perspectives of parents on the signs noticed in their daughters and the context in which difference is noticed. Objective: This study sought to explore how parents make sense of their daughters’ behaviours and the processes by which behaviours are perceived as requiring intervention or diagnosis. Participants: Five parents whose daughters (aged 9-12 years) had recently received a diagnosis of an Autism Spectrum Condition without cognitive impairment were invited to tell their stories of diagnosis. Design: Transcripts were analysed using a narrative approach, focusing on how stories were told. Findings: Narrative themes were identified across transcripts in relation to the process by which behaviours are made sense of. Themes included: daughters only showing their ‘real self’ in safety; their distress peaking; parents questioning normality; and parents feeling blamed and unheard. Conclusions: The findings are discussed in relation to existing research and theory. Implications are discussed in relation to education and health services and UK policies. Further research into parents’ experience of judgement in relation to their child’s behaviour, and exploration of interventions for masking in girls is needed.