The stereotypical image of the anthropologist venturing to a remote land has often been evoked to illustrate the disorientation and confusion experienced by autistic people in a neurotypical society. British psychologist, Tony Attwood, describes an autistic child in a mainstream classroom as “an anthropologist, conducting research on a newly discovered culture” (2007, 91), while autistic scientist, Temple Grandin, described herself as an “anthropologist on Mars” in her conversation with the British neurologist, Oliver Sacks (Sacks 1995). Although ethnography has been used in these rhetorical ways—evoking the figure of the anthropologist without actually discussing it—to describe autistic behavior and experience, it has rarely been explored from an autistic and neurodivergent perspective. Being an autistic person, and at the same time an ethnographer, raises important theoretical and methodological questions for the discipline: if ethnography and participant observation represent core anthropological methods, through which reality is filtered and turned into knowledge, what does it mean to observe, analyze, and conduct fieldwork as a neurodivergent subject? How can variation in how we see, hear, and perceive the world influence ethnographic practice?
Anthropologists have been reshaping the field for some decades now, first by amplifying the scope of ethnography beyond its traditional focus on “remote,” rural and once defined as “traditional” societies, to include urban contexts that are near to the anthropologist, both geographically and culturally (e.g., Peirano 1998). More recently, the concept of field has been further redefined, observing how, far from being a well-delimited location, it can be dispersed, fluid, or even lack a physical space (Faubion and Fischer 2009). The Manifesto for Patchwork Ethnography (see also Günel, Varma, and Watanabe 2020) has continued this reflection discussing the role of ethnographers, their profiles, and the inequalities within the discipline. The authors of the Manifesto have observed how the traditional, long-term, in-person ethnography is often not accessible for many, demanding valorization of forms of fieldwork that entail significant involvement without necessarily being based on a long, exclusive, and uninterrupted presence in the field.
My analysis finds place within this line of analysis. It is based on both my specific experiences as an autistic migrant woman and an anthropologist who has worked in biomedical contexts in the three European countries in which I have lived and on broader reflections on what it means to conduct fieldwork with different forms of neurodiversity.
Autism as Another Way of Embodying the World
It is not an easy task to briefly summarize what autism is, especially if one wants to avoid pathologizing and stigmatizing language. Autistic writer, Joanne Limburg (2021), provides a useful analogy, highlighting the different thought processes and perceptions of autistic people by describing autism as a roadmap that substitutes the main highways with less explored roads and paths. In the 1990s, the autistic Australian sociologist, Judy Singer (2016), coined the term “neurodiversity,” building on the concept of “biodiversity” to underline the fact that autism and other neuro-developmental differences (e.g., dyspraxia, ADHD, and Tourette syndrome) are not pathologies but variations of the brain and expression of the richness of human nature.
Autism is a neurological difference, a different organization of the brain, that is present from birth—although in many cases it can be recognized and diagnosed later in life—and that shapes how we see, understand, and live in the world. Autistic ways of communicating can differ from mainstream communication. Autistic individuals might struggle with indirect requests and language (e.g. Sturrock, Chilton, Foy, Freed, and Adams 2022), and we might have difficulties understanding and replicating certain para-verbal behavior, including tone of voice, facial expressions, and eye contact. Many autistic people have different sensorial experiences, meaning that we might find certain noises or lights too intense, and we can be overwhelmed. Autism is also associated with executive functioning difficulties, with a large body of research showing that autistic people can struggle with task initiation and task switching (e.g. Buckle, Leadbitter, Poliakoff, and Gowen 2021). Elsewhere, researchers have highlighted that autistic people can pay more attention to details compared to neurotypicals and that autistic people tend to show good systematization skills (e.g. Baron-Cohen, Ashwin, Tavassoli, and Chakrabarti 2009). Our knowledge and understanding of autism continues to evolve, with autistic people playing a pivotal role in producing more attentive and nuanced descriptions of autistic experiences, difficulties, and abilities.
Although autistic differences are not symptoms to treat or contain, they can be disabling in certain situations, especially in a rigidly organized society that leaves little room to bodies and minds that deviate from a narrow idea of normality. Autism is understood as a spectrum—while there are common experiences of inhabiting reality in different, under-explored ways, each autistic individual can have a specific set of abilities and face a specific set of challenges. While there have been methodological reflections on facilitating the participation of autistic people in qualitative research as interviewees (Benford and Standen 2011; Courchesne, Tesfaye, Mirenda, Mitchell, Singh, Zwaigenbaum, and Elsabbagh 2021), reflections on autistic people as ethnographers are very rare (the few examples include Prince 2013 and Rourke 2019). My short text builds on my individual experience of ethnographic work, which I have been conducting for years prior to my diagnosis, to ultimately open a broader discussion.
Being in the Field
Doing fieldwork as an autistic person means to see, hear, and process information in different ways, and this difference has an impact on our theoretical approach. In this sense, neurodivergence can be an epistemological position that shapes and informs our way of looking at reality.
Decolonial and feminist approaches have helped reconfigure the role of ethnography as a practice whose value lies not in its alleged objectivity but in its partial and situated nature. Following these approaches, the position of the ethnographer has acquired a new relevance and explicitly mentioning the gender, race, or even social class of the person conducting the research has become increasingly accepted. However, it remains uncommon to find discussion of the physical or psychological conditions of a researcher. There are, of course, notable exceptions. For example, in Bipolar Expeditions (2007), Emily Martin openly mentions her mood disorder diagnosis. But most of the time, there is no information about whether the person conducting research is neurodivergent or neurotypical. Nor do we know whether they were wearing sunglasses or a protective hearing device in the field, or whether they were grappling with brain fog or executive dysfunction while writing articles and reports. That is, we do not know if and how neurological differences shape research practices and results.
Well before I started studying anthropology and becoming familiar with ethnographic methods, I closely observed the reality around me to understand how it worked. Even before studying Bronisław Malinowski, I used participant observation to analyze the everyday social situations that were taking place around me, to learn what to say, and how to behave correctly. These efforts were not always enough to blend in and avoid bullying and harassment, but later they did prove to be a good training ground for my ethnographic research. I learned early in my life to unpack and disassemble social facts and events to better understand and find my place within them. Thus, for me, an autistic woman, observing and understanding the world around me represented tools for survival long before becoming research methods.
When I started doing fieldwork research, I felt at ease because my condition as a stranger was clear and explicit. As a participant observer at meetings, I was glad that I could observe, take notes, and ask questions to better understand the situation. The status of ethnographer removed the pretense of knowing the right things to say. Moreover, having conducted most of my research in foreign countries and using foreign languages allowed me to be honest about my need to learn about different realities.
However, this does not mean that current fieldwork practices are automatically inclusive of all autistic people. In fact, ethnographic methodology tends to assume ability to navigate social conventions and ability to block or minimize the sensorial stimuli. For example, eye contact is sometimes a problem for me, as it is for many autistic people, but lack of eye contact is likely to be interpreted as rudeness or lack of interest rather than a specific communicative style. When speaking with patients, I often felt close to them and it was easier to maintain eye contact, but with some medical professionals with whom I felt more social asymmetry, taking notes was a good reason to look elsewhere from time to time. Moreover, while ethnography has changed approaches in the last decades, there are still traces of a belief that ‘authentic’ anthropological research implies long-distance travel, which can make ethnography not accessible for people with different disabilities. I am fortunate that my sensorial experience and communicative practice happen to be compatible with ethnographic norms, but much work remains to include a broader spectrum of sensorial and communicative differences.
Being neurodivergent means absorbing reality in different ways and being drawn to aspects of reality that would probably not capture the attention of neurotypical researchers. But it also means being bothered by lights, colors, and sounds that might not affect others. Nonetheless, the line separating neurotypicals from neurodivergents can be thin and unstable. During an interview I conducted a few years ago as part of my doctoral research, a woman with breast cancer described how, after her diagnosis and treatments, she felt more vulnerable and less prepared to face the invisible difficulties of everyday life. In particular, she mentioned how it was hard for her to use public transportation given that crowds and loud noises were now unbearable. Her experience as a woman living with cancer, in some ways, resembled my autistic experience. Reading my field notes from that period in light of my autism diagnosis, it becomes apparent that the empathy I felt with my interviewees was often based on the fact that both I and many of them diverge from what are considered norms of ability.
Several anthropologists have explored autistic experiences in terms of the peculiarities of autistic communication and differences in sensory perception. Some have also advanced the hypothesis that autistic differences might be interpreted as a different “culture” that contrasts with the mainstream or neurotypical culture (for an overview of different works and positions, see Cascio 2015). More recently, mobilizing the “ontological turn,” autism (and cognitive disabilities more generally) has been interpreted as an ontological difference (cf. McKearney and Zoanni 2018), and we, autistic people, are considered to experience the reality around us in ways that differ radically from the experience of neurotypical people. Past and recent anthropological interpretations of autism tend to emphasize our differences and our exceptionality. However, these ideas most probably indicate how autism is seen from the outside, rather than an explanation of what autism is and how autistic people perceive the world. Such approaches provide insight into some of the differences in perception that are a common experience for autistic people. However, autistic people do live in the same time and space as anyone else, and many of the experiential differences are not due to a radical alterity but to occupying a position not understood or accepted by the mainstream. The epistemological position of autistic people is part of the reality that ethnography tries to capture.
This is of particular importance in this moment, when ethnography is undergoing significant changes due to the reorganization of academic labor and is further accelerated by the pandemic. We are witnessing a redefinition of what counts as a field, which no longer constitutes an exclusively physical place but increasingly includes virtual environments, and the creative adaptation of ethnographic practices to these new realities. Online ethnography has now established its legitimacy, and online interactions are usually more accessible for many autistic people. However, we still need to imagine ways in which the wide range of communicative styles could find space in ethnographic practice, addressing both environmental obstacles and difficulties linked to restrictive social conventions.
It is important that this wave of innovation does not exclude what can be defined as “divergent ethnography.” Ethnography has proved to be a useful and flexible methodology capable of incorporating theoretical evolutions of great importance for anthropology and the social sciences. However, this evolution will remain incomplete if ethnography cannot accommodate the perspectives, difficulties, and needs of neurodivergent (and more generally disabled) researchers. I aim to begin a conversation about what it means to analyze reality through neurodiverse experiences and how new individual and theoretical entanglements can be built by exploring new ways of perceiving and interpreting reality.
Attwood, Tony. 2007. The Complete Guide to Asperger’s Syndrome. London: Jessica Kingsley Publishers.
Baron-Cohen, Simon, Emma Ashwin, Chris Ashwin, Teresa Tavassoli, and Bhismadev Chakrabarti. 2009. “Talent in Autism: Hyper-Systemizing, Hyper-Attention to Detail and Sensory Hypersensitivity.” Philosophical Transactions of the Royal Society B 364, no. 1522: 1377–83.
Benford, Penny, and Penny J. Standen. 2011. “The Use of Email‐facilitated Interviewing with Higher Functioning Autistic People Participating in a Grounded Theory Study.” International Journal of Social Research Methodology 14, no. 5: 353–68.
Buckle, Karen Leneh, Kathy Leadbitter, Ellen Poliakoff, and Emma Gowen. 2021. “ “No Way Out Except From External Intervention”: First-Hand Accounts of Autistic Inertia.” Frontiers in Psychology 12: 631596.
Cascio, M. Ariel. 2015. “Cross-Cultural Autism Studies, Neurodiversity, and Conceptualizations of Autism.” Culture, Medicine, and Psychiatry 39: 207–12.
Courchesne, Valérie, Rackeb Tesfaye, Pat Mirenda, David Nichols, Wendy Mitchell, Illina Singh, Lonnie Zwaigenbaum, and Mayada Elsabbagh. 2021. “Autism Voices: A Novel Method to Access First-person Perspective of Autistic Youth.” Autism, OnlineFirst.
Faubion, James D., and George E. Marcus, eds. 2009. Fieldwork Is Not What It Used to Be: Learning Anthropology’s Method in a Time of Transition. Ithaca, N.Y.: Cornell University Press.
Günel, Gökçe, Saiba Varma, and Chika Watanabe. 2020. “A Manifesto for Patchwork Ethnography.” Member Voices, Fieldsights, June 9.
Limburg, Joanne. 2021. Letters to My Weird Sisters: On Autism and Feminism. London: Atlantic Books.
Martin, Emily. 2007. Bipolar Expeditions: Mania and Depression in American Culture. Princeton, N.J.: Princeton University Press.
McKearney, Patrick, and Tyler Zoanni. 2018. “Introduction: For an Anthropology of Cognitive Disability.” The Cambridge Journal of Anthropology 36, no. 1: 1–22.
Peirano, Mariza G.S. 1998. “When Anthropology is at Home: The Different Contexts of a Single Discipline.” Annual Review of Anthropology 27: 105–28.
Prince, Dawn Eddings. 2013. “ “All the Things I Have Ever Been”: Autoethnographic Reflections on Academic Writing and Autism.” In Worlds of Autism: Across the Spectrum of Neurological Difference, edited by Joyce Davidson and Michael Orsini, 319–30. Minneapolis: University of Minnesota Press.
Rourke, Robert. 2019. A Sensory Sociology of Autism: Habitual Favourites. London: Routledge.
Sacks, Oliver. 1995. An Anthropologist on Mars: Seven Paradoxical Tales. New York: Knopf.
Singer, Judith. 2016. NeuroDiversity: The Birth of an Idea. Kindle ebook.
Sturrock, Alexandra, Helen Chilton, Katie Foy, Jenny Freed, and Catherine Adams. 2022. “In Their Own Words: The Impact of Subtle Language and Communication Difficulties as Described by Autistic Girls and Boys without Intellectual Disability.” Autism 26, no. 2: 332–45.