Parent experiences of obtaining an autism diagnosis for their daughter: An interpretative phenomenological analysis

Abstract

The process of getting an autism diagnosis can be a stressful and uncertain time for families. While the experiences of parents seeking an autism diagnosis for their child have been explored in previous research, the experiences of families with a daughter have been underrepresented. It is likely that their experience is markedly different given that females are often misdiagnosed and/or are diagnosed at a later age. Semi-structured interviews were conducted with six families, and interpretative phenomenological analysis was used along with member checks to derive themes from the participants’ narratives. Three superordinate themes emerged from the analysis: ‘Something’s not right’ consisted of narratives describing the process of getting their daughter diagnosed and ‘So many barriers’ captured the factors that delayed assessment and diagnosis. Finally, the third theme ‘I wanted to just get this process done and dusted’ explored the range of emotions experienced by families during the assessment process. The importance of challenging outdated conceptualisations of autism and providing further training to increase health professionals’ confidence when diagnosing autistic females is emphasised, as well as recognising that families may experience a range of emotions during the assessment and diagnostic process, including positive ones. Lay abstract Autistic females are often diagnosed later than males and are also more likely to be misdiagnosed with other conditions. Co-occurring conditions may also be diagnosed at the time of the assessment but their autism diagnosis is missed. The majority of research examining the parent experience of obtaining an autism diagnosis for their child has included predominantly or exclusively male children in their samples. This study examines the experiences of parents in obtaining an autism diagnosis for their daughters in Australia through interview data which allowed for an exploration of their lived experiences. Several of the parents reported positive feelings of excitement or curiosity in relation to the assessment process which are emotions that have not been reported in earlier studies. While recent research advances have improved our understanding of gender differences in autistic behaviours, the findings of this study suggest that some practitioners have obsolete knowledge which may lead to misdiagnosis or missed diagnosis in some females. Although the extent that these experiences are representative of parents in the wider community is unknown, the fact that they are still being reported in the present day suggests that a proportion of health professionals continue to practice with outdated conceptualisations of autism.