Background and aims: This thesis aimed to explore how autistic teenage girls are viewed within research, and how they are portrayed in the media; these insights were used to develop a co-produced study that aimed to illuminate the social world of autistic teenage girls, and then use these findings to improve their experiences. This addresses a gap in the literature focused on presenting the lived experiences of autistic teenage girls in research, including the impact being autistic has on their social worlds. The established tradition of research focussing on autism from the predominant perspective of autistic males is shifting, and an increasing number of contemporary researchers recognising and acknowledging the existence of a more variable presentations of autism. For example, explorations into why females were more likely to receive a later diagnosis of autism, or not receive a diagnosis at all, illuminated what many people already knew from their first-hand experiences – that there could be a different presentation of autism in females. Asking and listening to what autistic people have to say about their autism and experiences has been a further step in ensuring that research priorities reflect the needs of the autistic community, but some social groups are under-represented. The research presented in this thesis focuses specifically on one such group – autistic teenage girls. In this way, this study engaged and collaborated with autistic girls and other key stakeholders, including families, to address the under-representation of this group.
Method: This study used qualitative inquiry across three interrelated phases to explore the complex social discourse on autism, specifically, teenage girls aged 13 to 18. This consisted of a scoping review of 29 academic research articles guided by Arksey and O’Malley (2005), a discourse analysis of news publications across periods in 2015 and 2019 guided by Willig (2013), and a coproduced version of the ‘one-page’ profile. A total of 19 stakeholders were involved in the co-produced phase which utilised live workshops, email contributions and written comments as data sources. Each phase was developed in response to the evolving understanding of autistic teenage girls’ experiences, reflective of an iterative process.
Results: Overall, the main findings from the scoping review indicated that autistic teenage girls are positioned as subjects to the research process. The thematic analysis highlighted topics such as camouflaging, and that research focussed on measuring the occurrence of experiences rather than understanding them. The discourse analysis of news items sampled form 2015 and 2019 indicated that teenage autistic girls are positioned as the source of news and entertainment, with a preference for second-hand accounts; wider discourses such as ‘models of disability’ were also identified. These findings were used to design an empirical phase that utilised a participatory co-production approach in order to re-position autistic teenage girls as experts of their social world. The data from the co-produced phase was used to develop a co-created version of a ‘one-page profile’ tailored for autistic teenage girls. A ‘one-page profile’ captures all the important information about a person, applying person-centred thinking, values, and skills in a practical way. They are written by the individual, at times with support of people who know them, and can be used across education, health, and social care environments.
Conclusion: This thesis developed an account of a complex social discourse and co-constructed a version of the ‘one-page profile’ for autistic teenage girls as an outcome. It highlighted how autistic teenage girls experienced the social world in unique ways. Involving autistic people and other key stakeholders is crucial in understanding what these experiences are, so that research and services are not only about them, but for them too. This is of particular importance for the development of services aimed at supporting or improving health and well-being.