A sociolinguistic approach to the identity construction of and medical discourses about women with a late diagnosis of autism.

Lead Research Organisation: King's College London
Department Name: Education and Professional Studies

Abstract

Autism Spectrum Disorder is a pervasive neurodevelopmental disorder characterised by unusually restricted and repetitive behaviours and interests, and impairments in social communication abilities (Hiller et al. 2016; Lauritsen, 2015). There is some ambiguity over the precise male-female ratio, but in general, more male than female individuals are diagnosed with autism (Lai et al., 2014a), and women receive their diagnosis at a later age than men (Begeer et al., 2013). It has been argued that women are often diagnosed later because the clinical symptoms of autism are expressed differently in females or because of an inherent gender bias in the screening and assessment tools (Baldwin et al., 2016; Kirkovski et al., 2013; Lai et al., 2014b).
To date, the vast majority of research on autistic women has been situated within the biomedical fields (Sweileh et al. 2016) and very few linguistic studies on autistic women have researched diagnosis and identity construction. Therefore, there is a need for empirical linguistic approaches to women's first-hand accounts of the process of receiving a diagnosis of autism. In this PhD, I will primarily draw upon the sociolinguistic framework of small stories (Georgakopoulou, 2007), which advocates the potential of non-canonical stories as information sources on collaborative identity construction and offers an alternative to the common clinical approaches to researching autism.
My PhD aims to address the following research questions: (RQ1) How do autistic women collaboratively construct their experiences of receiving, or struggling to receive, a diagnosis of autism? How do diagnoses of autism (late or otherwise) come to play a role in the identities of autistic women? (RQ2) How are the identities of autistic women, and their experiences of diagnosis, situated in relation to the wider, medical discourses of autism?
I will use a combination of qualitative data collection and analysis methods to produce informed interpretations of the issues that emerge from the data. To research the role of diagnosis in the collaborative identity construction of autistic women (RQ1), data will be collected from both online and offline communities. Firstly, I will collect narratives from closed Facebook groups by and for autistic women, such as 'Autism Spectrum Women's Group', posted over approximately one year's time. The group's dynamics will be analysed using the framework of small stories (Georgakopoulou, 2007), combined with theories of the interactional nature of narratives told on social media (Page, 2012; Georgakopoulou, 2016). These theories will allow a focus on the collaborative and emergent nature of identity construction online. Secondly, I will conduct semi-structured interviews with 10-15 women about their experiences of receiving a diagnosis. Participants will be recruited through the organisation Research Autism which advertises appeals for research participants on their website and social media. The interviews will be analysed using illness narrative frameworks (e.g. Bury, 1982; Williams, 1984) to examine the ways in which women make sense of their autism diagnosis through telling stories about key events and experiences.
To research the medical discourses about autistic women (RQ2), I will build a corpus of the most cited articles on autistic women published over the last two years in the three highest ranking academic journals on autism, i.e. 'Journal of Autism and Developmental Disorders', 'Research in Autism Spectrum Disorders' and 'Autism' (Sweileh et al., 2016). This data set will be analysed using thematic discourse analysis (e.g. Braun and Clarke, 2006; Koteyko, 2014) to draw out the main themes and to gain insight into how the diagnosis of autism in women is explicated in medical research. It will also generate a deeper understanding of whether and how the representations of autistic women in medical discourses are used as resources in the women's personal identity constructions.

Publications

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Studentship Projects

Project Reference Relationship Related To Start End Student Name
ES/P000703/1 01/10/2017 30/09/2027
1916664 Studentship ES/P000703/1 01/10/2017 30/11/2021 Annelies Foccaert