Fandom and Neurodiversity

I wrote a guestblog for the website of Henry Jenkins.

Dutch acafan Martine Mussies lives in the Netherlands, where she is writing her Phd about the Cyborg Mermaid. She is also working on a project about King Alfred, with support from Leiden University. Her autism plays an important role in her scholarly work. She pleads for a type of fan studies research that incorporates neurodiversity.

If I had received a dollar for every time the children at the schoolyard asked me where I really came from, I would have been quite a rich kid. As for bodily features, I ‘pass’ as a Dutch woman in the Netherlands. I might be a bit on the short side, but solely in terms of skin tone and hair color and eyes, I’d say I fit in quite easily. Still, something has always been ‘off’. The children’s question was a keen one, and in line with the feeling that has accompanied me all my life. A sense of not-belonging, as if I am some sort of wandering alien, accidentally lost on planet earth. Throughout my life, many people around me saw how this Otherness of mine manifested itself in my way of moving, talking, dressing and above all: thinking. From exactly the same building blocks, I consistently constructed a narrative that was completely different from the one constructed by my neurotypical peers. Because autism has such an enormous influence on the way I experience the world, it is logical that this has also affected my academic work. 

Looking back, this was already visible when I was still an undergraduate in musicology – a decade before my diagnosis. In terms of grades, my studies went rather well, but in terms of cooperation and contacts with teachers… not so much. I did not really understand what they expected of me and, despite working hard, I regularly clashed with the university’s neurotypical norms, which made me feel like a freak. Yet, I vividly remember one presentation in which my autism was actually an advantage to  me. It was in the context of a course about ways of experiencing music. I tend to experience colors when I hear sounds. This neurological phenomenon, commonly referred to with the umbrella term “synesthesia”, is more common in people with autism (20 percent of people with diagnosed autism also have reported synesthesia, much more than the average 2-4 percent). In order to demonstrate this to my classmates, I made a computer simulation (in ActionScript – good ol’ times) that showed the colors I experienced with certain sounds. I played the piano and the colors simultaneously appeared on the screen.  My classmates could also type in words, which would then automatically appear in the “right” colors. To arm myself against disbelief and suggestions of paranormality, I had included an interview with none other than Professor Robbert Dijkgraaf which he had given me prior to the demonstration. He was already a national celebrity at the time, explaining on TV about the universe, string theory, quantum gravity and the border area of mathematics and particle physics. And he is a synesthete as well. It worked. I received applause and the highest possible grade, but much more importantly, it was the first time that I felt how my Otherness could be an asset. 

Fast forward a decade. I have been officially diagnosed with a “very severe case of autism spectrum disorder” and work from home on my dissertation and numerous other projects. I delivered over 30 paper presentations and published over 40 articles. My interests are wide and intense, but they are united by a common thread: autism. This label refers to a range of complex neurological aspects that causes the autistic brain to be wired differently. But just like a jam pot label might list the ingredients but reveal little about the taste or one’s experience in eating the jam, the label that a person likes to identify him/herself with tells little about lived experiences. What does it mean to be an autistic individual in a neurotypical society? As I wrote in Transformative Works and Cultures (in a special issue on “Fan Studies Methodologies”), “I plead for a type of fan studies research from the angle that everyone has different perceptions in mind and that the human memory is more reconstructive than reproductive in nature. That means that nobody can accurately interpret our actions and feelings without us expressing them ourselves.” Because everything I do is done from my own framework, formed by my own brain, all my work is directly or indirectly about autism. This allows me to offer a unique perspective that is useful to academia – and with that, to our society – rather than a deviation that needs to be adjusted. Moreover, as I will never fit into the mould of any neurotypical society, with their static categories of identity (immigrant/autochthonous, male/female, child/adult, gay/straight etc.), I now consider it one of my tasks to problematise these pre-formed pigeonholes.

The greatest challenges in academically working with and from explicitly neurodiverse perspectives come, of course, from a methodological point of view. My undergraduate studies (musicology, Slavistics, conservatory) were quite traditional in their methodologies. In the Utrecht musicology department, we nicknamed this approach “the Pollmannian tradition”, after the 2005 book “De Letteren als Wetenschappen” (The Humanities as Sciences) by Utrecht Professor of Linguistics Thijs Pollmann. In it, the author argued for “rationality” and “truth-telling” within the so-called “alpha sciences”. Central to his thinking was the philosophical tradition of science, and questions around the purpose and function of humanities research play a rather subordinate role in his book. Fifteen years later, even within the more traditional disciplines, voices are raised against the so-called objectivity of the researcher. My methodology, which I call “autiethnography” (a writing of and about the autistic self), aims to show how neurotypical status affects auto-ethnographic perception. Subsequently, autiethnographies can cross the boundaries of humanism by providing examples of metahumanist subjectivity. Moreover, by zooming in and out of the writing of an autiethnography, I can address issues of intersectionality versus simultaneity as well.

I would like to end this Statement with a little disclaimer. Don’t get me wrong, it is by no means my intention to argue that my autistic mode of analyzing (or even my whole way of being in the world) is somehow “better” than the many non-autistic ones. I am not in any competition; I mainly want to offer alternative understandings. A diamond has many facets and you can only see a few of them at one time. However, looking at it through an autistic lens can show you a facet that you may not have noticed before. Use it as you wish.