(The image above is a table containing the themes, sub-themes, and example quotations identified within this study's interviews. These themes arose following an in-depth thematic analysis of interview transcripts, in line with Virginia Braun and Victoria Clarke's recommendations in their book Thematic Analysis: a Practical Guide (2021)).
This summer, for my project, I asked the following research question: How do late-diagnosed autistic women recount their experiences of the period immediately following their diagnosis? To address this question, I conducted five, semi-structured interviews with women who had been diagnosed after the age of 15. Participants in this study were all attending university and had an average diagnostic age of 23 (one participant did not report this age). In this post, I will share my personal reflections on this research process and my main findings.
From a methodological standpoint, I struggled most with attaining ethics approval to interview participants. I was required, understandably, to provide proof of Garda Clearance in order to submit my application for ethics approval to the Department of Education at Trinity, under which I was conducting my research. Notably, autistic women are categorized as a 'vulnerable' group in ethics forms, which I find problematic. Terms such as vulnerable oversimplify, disempower, and belittle the diversity of experience among autistic women and ought to be challenged. I hope to see pushback against use of terms like vulnerable in academic and ethics settings moving forward. Aside from my concerns with the use of language, I faced difficulties with gaining Garda Approval, given that I lived in the United States for more than six months as a legal adult, which required me to also receive a background check from my home state. Luckily, my family was incredibly helpful in this process and spoke to the local police department on my behalf, which I am grateful for. While initially frustrated with the delays I faced in my project as a consequence of this technicality, in the waiting period I was able to engage in an extensive literature review, predominantly focused on literature by and for autistic women. Reading these texts deepened my knowledge on this topic and allowed me to develop a more thoughtful, relevant interview guide. Consequently, what began as a point of frustration and concern ultimately improved the quality of my research and taught me a great deal about patience and focus.
More personally, I am celebrating the one year anniversary of my autism diagnosis this month and due largely to this project, my perspective has completely shifted from when I was initially diagnosed. Going into this project, I was motivated to champion the experiences of autistic women and uplift the voices of this historically underrepresented group. However, I was unaware of my own lack of self-acceptance for my diagnosis. Living as an undiagnosed autistic woman for 20 years fueled my insecurities, feelings of isolation, and self-doubt. Reading memoirs by autistic women revealed to me the extent of my struggles with my identity, and at times, I felt defeated and as though I was drowning under the weight of my unresolved trauma and consequent lack of confidence. Interviewing the five participants in my study has been the most rewarding experience of my life. Seeing the individuality and strength of these women was powerful, and I will never be able to adequately articulate how moving it was to feel connected to them after a lifetime of feeling disconnected and to feel love for them after a lifetime of feeling un-loveable. I am now proud of both my identity as a late-diagnosed autistic woman and of the other women in this community who share their courage, creativity, and beauty with the world everyday. To any other autistic women who might see this post, I see you, I support you, and I am honored to be a member of an international community with you.
Given the limited space of this post, I will briefly describe the main themes resulting from this research. My official report will be completed soon, and I plan to share that on this platform for those who might be interested in learning more about the specific themes and sub-themes identified. To start, the benefits of engaging with the autistic community were emphasized in almost every interview. This engagement, according to participants, promoted increased positivity in their discussions of autism and sense of self. Similarly, participants stressed the importance of utilizing humanistic, neurodivergent-friendly language when discussing autism. Participants also frequently discussed their tendency to compare their presentation of autism with more a stereotypically male presentation of autism and how this can fuel imposter syndrome and self-criticism.
There is certainly a need for increased diversity in this research field, such as inclusivity for other gender minorities and women of differing socio-economic backgrounds, racial groups, and levels of education. I hope to see and participate in more inclusive research in the future.
The following list of texts were those I engaged with prior to developing my interview guide (excluding academic journal articles). Many of these texts are written by and for autistic women. I cannot recommend more highly these texts for those seeking to gain insight into aspects of the autistic experience, though I urge anyone learning about autism to respect the vast diversity of experiences among autistic people. There is always more to read and learn! I hope you enjoy these wonderful texts :)
A Guide to Mental Health Issues in Girls and Young Women on the Autism Spectrum: Diagnosis, Intervention and Family Support, Dr. Judy Eaton (2018)
Aspergirls: Empowering Females with Asperger Syndrome, Rudy Simone with foreword by Liane Holliday Willey (2010)
Educating and Supporting Girls with Asperger's and Autism, Victoria Honeybourne with foreword by Professor Tony Attwood (2016)
Ethics and Neurodiversity, Edited by C.D. Herrera and Alexandra Perry (2013)
Girls and Autism: Educational, Family and Personal Perspectives, Edited by Barry Carpenter, Francesca Happe (unable to insert accent on e), and Jo Egerton (2019)
Nerdy, Shy, and Socially Inappropriate: A User Guide to an Asperger Life, Cynthia Kim (2015)
Odd Girl Out, Laura James (2017)
Ultraviolet Voices: Stories of Women on the Autism Spectrum, edited by Dr. Elisabeth Hurley (2014)
Women and Girls with Autism Spectrum Disorder: Understanding Life Experiences from Early Childhood to Old Age, Sarah Hendrickx with foreword by Judith Gould (2015)