Research now shows that autistic people have many different gender identities, but are often still viewed by their friends, family and society as either men or women. For a long time, autism, as a condition, was understood to be a difference that only boys, and later boys and men, experienced. It has also been associated mainly with people who have learning difficulties. This has meant that the criteria that doctors and other professionals use to identify and support autistic people exclude those who are also believed to be women, and who appear to be able to function without help. As such, this latter group is far less likely to be identified in childhood and will instead go for a long time without the support and help they need. This has a devastating effect on an individual’s mental health and personal identity.
This PhD hopes to work with autistic people perceived as women (FPAPs ) to develop a process/thing that can aid working through life experiences in a structured, safe and positive manner. I aim to explore the experiences that form how FPAPs feel negatively about themselves and their life experiences prior to being identified. I aim to create a process that FPAPs can use to explore these safely and creatively, using their personal digital data to gain perspective on their past, and hope for their future. FPAPs participating in research, and writing about their lives, have described the difference being identified/ diagnosed makes to them. They are more confident, feel validated and gain new knowledge of their past life and personal history knowing what they are, and why they have experienced their difficulties.
The rapid increase in the amount, and types, of digital personal data available allows FPAPs to remember and explore their past and identity in ways that have meaning and relevance to them, whilst honoring their individual communication and information-processing and recall needs. These threads of individual data also have the potential to combine into a database of lived experiences for future research to be undertaken through. Methods used in computer science research use a variety of explorations of experience including drawing, brainstorming, journaling and games. Both these data and methods make them particularly flexible, diverse, and thus suitable for FPAPs use in participatory research about themselves.
I hope to enable FPAPs to feel better about themselves and their lives after they are identified as autistic. I also aim to provide better understanding of this group to mental health professionals and services so they can better support and identify FPAPs in distress.
This author is supported by the Horizon Centre for Doctoral Training at the University of Nottingham (UKRI Grant No. EP/S023305/1).