So Now What? Exploring the Post-Diagnosis Experiences of Autistic Women
Supervised by Professor Michael Shevlin, Department of Education at Trinity College Dublin
I. Project Background and Research Question
As awareness of neurodiversity increases, prompting more inclusive research, academics have steadily begun to note the disparate diagnosis rates of autism in men and women. It appears this diagnosis gap is due to a lack of knowledge about how autism presents in women, rather than a true distinction in the number of cases distributed between the sexes (Barry Carpenter et. al, 2019). I want to be a part of this shift towards more equitable and representative research. I am interested in exploring the post-diagnostic period experiences of women with late, or adolescent, autism diagnoses. My goal is to gain insight into what support services are beneficial during this period and what can be improved.
I am drawing on inspiration from the book Girls and Autism: Educational, Family, and Personal Perspectives, edited by Barry Carpenter, Francesca Happe, and Jo Egerton (2019) as well as Eleanor Bushe’s (a Trinity College Dublin Student) 2018 Master’s in Education Thesis. My research question will address a perceived gap in the literature:
How do late diagnosed autistic women recount their experiences of the period immediately following their diagnosis?
My key goal throughout my research project is to personalize findings to decrease stigma and expand appreciation for the multiplicity of experiences among autistic women. To achieve this goal, I will conduct semi-structured interviews with four late diagnosed (adolescent period onwards) autistic women, and one professional with experience in the fields of autism diagnosis or support. The focus of these interviews will be on the period immediately following diagnosis, in an effort to understand how the women recount their experiences as well as what supports they deemed most useful. As semi-structured interviews, these will allow participants to share their perspectives in an open-ended, conversational manner, with a goal of increasing the proportion of personal experience centred research in this subject area. My research project will culminate in an informative, accessible writing piece that affords the community the opportunity to engage with and learn about the post-diagnosis autistic experience in an equitable way, given that my research highlights the voices of autistic individuals. All participants will be anonymised.
By increasingly listening to their stories, I believe academics will begin to propagate research that highlights autistic women with different experiences, needs, and skills, ultimately shifting the approach from pathological to humanistic. I will centre the unique perspectives of these experts by experience and challenge the “one size fits all” approach to supporting neurodiverse people. My objective is to add research to this topic that’s based on personal narratives in order to humanize and destigmatize autistic people and their perspectives and encourage other researchers to do the same.
IV. Further Resources
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