Appreciating Neurodiversity through the Lens of Virtual Communities
By Eiko Ikegami
Autism spectrum disorder (ASD) has been studied primarily as a medical condition for which most attention has been focused on the diagnosis and treatment of children. In comparison, researchers know rather little about the lives of adult autistic people, and even less about the way they interact with one another. For this reason, I chose to study communities of people on the spectrum inside the virtual world of Second Life. Second Life is an environment ideally suited to them because the on/off button on their computers offers safety from sensory overload. I was fortunate to gain entry into the virtual world of autistic people when I assumed the form of Kiremimi Tigerpaw as my avatar.
After years of ethnographic work in this virtual community, I found the incredible richness of its members’ mental life to be its most surprising aspect. Although I entered with the expectation of studying people with a disorder, I acquired a heightened appreciation of the neurodiversity among human beings. While people with autism have difficulty with some things that are easy for us neurotypicals, as they call us, they excel in other things to which we are insensitive. To provide a direct glimpse into this world, I created a website with a blog about my travels with an NHK television crew, visiting the autistic people behind the avatars whom I met in Second Life. They live in such faraway locations as Jackson Hole in Wyoming, El Centro in California, and others. For those who can read Japanese or are brave enough to try to read Google translations, my website about my Japanese book contains more information on the topic (an expanded English version of that book will appear later).
I have studied the experiences of people in the virtual world of Second Life since 2008, but stumbled upon the finding that many autistic persons communicate more easily through avatars that allow their talents and personalities to shine through. Many autistic people see, hear, touch, or smell the world in ways that differ from those of neurotypicals due to their different mental functioning. The majority of people on the autism spectrum are unusually sensitive to sensory information; although their heightened sensorium can be a source of rich mental activity, it can also lead to sensory overload. Hence it is not surprising that the most frequently reported benefit of participation in virtual worlds among the autism community is the mitigation of sensory overload. For example, consider the following statement by an autistic avatar explicating the features of SL that enable his social interactions:
Being able to turn down the sound, prevent people coming up to me, not having the movement of air or smells, pollen, insect sounds, intensity of light, being able to be supported in a chair—not falling almost all the time and having to brace myself against objects or be horizontal—yet still being able to move in a space and explore. This is coupled with the fact that I seem to communicate far more fluently via text than I can by speech (I lack the memory to examine the sounds and it requires too much focus to maintain that effort). (April 24, 2013)
Furthermore, autistic avatars have no need to interpret such social cues of others as eye contact, facial expressions, and gestures. After all, whether avatars are autistic or not, none of them can express nonverbal social cues well in the current technology of virtual worlds. One day when I was attending a weekly session of an autistic mutual support group, one avatar was sitting with a designer T-shirt with the saying, “All avatars are autistic.”
It was an “Aha!” moment for me when I saw his T-shirt. I had been thinking about why autistic avatars can communicate better in virtual worlds, but my own avatar is also autistic; it does not allow me to express myself well through facial expressions and gestures; I cannot make eye contact or other nonverbal social signals.
The rules of communication in the real world have been made to accommodate the preferences of neurotypical people. Autistic people are often pushed aside in social life because they are a minority who must live under the rules evolved by neurotypical people. In the virtual world of communication among avatars, however, there are technologically defined spaces that democratize the rules of communication, however unintentionally, and allow autistic and neurotypical people to socialize as equals. This is a blessing not only for autistic individuals but also for me, since I as a sociologist can approach autistic avatars in a more natural way without forcing them to move beyond their comfort zones.
My experiences with autistic adults over the past several years have often challenged my assumptions about my own cognitive framework. For example, seeing the same landscape together with autistic avatars does not necessarily mean that we are seeing the landscape in the same way. They are neurological “others” for me who question my neurotypical views of the world.
My ethnographic experience with autistic people reminded me of my own experiences decades ago when I moved from Japan to the United States to study sociology in Harvard’s graduate school. I could not speak or hear English well, and as a result I had to be as quiet in the seminar room as if I had been a self-confined autistic child. But as many autistic children have in fact rich mental worlds even when they cannot express themselves well, I also had a lot to say, but I could not express myself effectively in a new environment. I also realized that some cognitive assumptions that I had grown up with and that seemed natural to me were in fact culturally defined ways of feeling, sensing and viewing. It was quite a frustrating experience, but it was curiously enriching; I was breaking the boundaries of my cognitive framework.
I felt a similar sense of exhilaration when I was conducting ethnography with autistic avatars. Interacting with neurologically different people challenged my cognitive and sensory assumptions. Knowing oneself is a counsel of various philosophies and religions around the world. Paradoxically, however, we often come to know ourselves better only when we interact with and try to know “others”; we are able to touch the unseen parts of ourselves only when others hold up a mirror to us. Interacting with cultural/linguistic others is functionally similar to interacting with neurological others. Learning about autistic awareness leads to a new level of reflection regarding the depths of human cognitive experience.
As one of the founders of YHouse, I drew on my combined background in sociology and history to help set up the second of five research modules centered on social science. However, my project of studying diverse intelligences in virtual worlds impinges on the first four of the modules, from the biological causes of autism (nature) to the social interactions (culture) of avatars in virtual worlds (technology), while reflecting on the relationships between neurodiversity and the human condition (reflection).
Eiko Ikegami is Walter A Eberstadt Professor of Sociology and History at the New School for Social Research in New York City, and Board Member and one of the founders of YHouse.