Neurodiversity and gender
PhD candidate at the Centre for Women's and Gender Research (SKOK), Rowan Violet Maddox, writes about neurological conditions and how they interact with gender.
What is your PhD project about?
My project is about neurological conditions and their relation to gender. I am primarily focussed on autism, but I am also interested in attention deficit disorders, dyspraxia and dyslexia. I am interested in these conditions because of their evolution from little known or "rare" conditions to being commonly diagnosed. In itself this says something interesting about many facets of society. Furthermore, I want to understand what it means that many of these conditions (particularly autism) are able to be considered as subjectivities and that collective groups are formed through identification with these conditions.
Could you say more about how your project relates to gender?
There is a distinct gender aspect to this topic. All of the mentioned conditions have been primarily associated with people assigned male at birth. Where collected, the data state that the gender ratio shows a significant disparity between people assigned male and people assigned female at birth who then get diagnosed with these conditions. Cultural representations and popular discourse are also weighted in favour of depicting cisgender men and boys' relations to, and experience of, these conditions. This impacts in a major way on people assigned female at birth's life outcomes, including mental health, employment, education and overall well-being.
Presenting these conditions as attached to biological maleness delimits understandings of how they are experienced in non-stereotypical cisgender people, trans and non-binary people. This also has an impact on when a person is diagnosed, how they understand themselves and which support measures are implemented across a life course.
In addition, recent medical, psychological and social research has begun to notice that these conditions might have a more complex relationship to gender. Some research suggests that these conditions, in particular autism, might be more common among the trans and non-binary community.
However, in many ways this research still relies upon an understanding of normative gender and does not interrogate the ways the social interacts with the understanding of, and enactment of gender. Consequently, I want to interrogate what is particularly gendered about these conditions, and what they say about our contemporary understandings and formations of gender, with the aims of widening the understanding of how neurological conditions interact with gender.
Your method is qualitative data collection and analysis. How will you collect your data, and what will your data consist of?
My data will (and does) consist of interviews with people with neurological conditions. I have conducted interviews using unconventional data collection methods to adapt to the social differences many with these conditions have. I want to re-think that as I go forward though, because even with adaptions I am not sure it is the best method due to it still being quite normative.
I am considering holding online focus groups with the structure of an online text-based chat forum, and I am also considering doing diary-based data collection where I "follow" people through the process of getting diagnosed by asking them to keep a regular diary, either online or offline. The current pandemic has made this a little more complicated as my potential research participants are situated in the United Kingdom at present.
Another part of my project is that I examine the ways that neurological conditions become embedded within popular discourse and how these are represented in cultural outputs. I am interested in how autism, ADHD and related conditions become a stand-in for certain gendered anxieties and how these anxieties relate to wider social and political issues.
How is your research relevant to the public?
A big problem in the diagnosis of conditions like autism, ADHD and related conditions is that gendered bias stands in the way of timely diagnosis. A diagnosis is important for so many reasons and not just in educational and employment settings. Many people are now realising that they were missed from diagnosis or that they were mis-diagnosed (i.e. a lot of people get mental health diagnoses which may be caused through missed diagnosis but do not get at the crux of the matter).
There are several other researchers looking at this area and I hope that the more of us there are doing this research, the more the medical community and the general population - which includes important gatekeepers to diagnosis - will be able to have an understanding of these conditions that do not just rely on binary gender stereotypes.