Invisible Autistic Infrastructure: Ethnographic Reflections on an Autistic Community

ABSTRACT

In this article, I provide an ethnographic account of an autistic-run community for adults in a North American city. By spending time with each other in loosely structured social interactions, members of this group participate in the ongoing construction of a complex and necessary social infrastructure in the face of often inadequate social and material support from their personal networks, and the larger society in which they live. The work this community does remains largely invisible because it runs counter to dominant biomedical understandings of autism and exists outside of the autism treatment industry.

KEYWORDS:

• Autism
• disability
• deficit-perspective of autism
• intersubjectivity
• phatic labor
• social infrastructure

Acknowledgments

I am grateful to my autistic interlocutors and friends who continuously pushed me to think in new ways about autism and disability. I am especially grateful to the members of Acomm, and others I met through Acomm, for allowing me into their community and for the warmth and encouragement they continuously show me. I am extremely grateful to my dissertation committee: Faye Ginsburg and Rayna Rapp (co-chairs), Helena Hansen, and Bambi Schieffelin for encouraging me to participate in this research while undertaking coursework, and for providing me with the intellectual scaffolding needed to develop these ideas. This project began in Bambi Schieffelin’s Ethnographic Methods course, and I am especially grateful for her ongoing willingness to brainstorm ideas with me, and her encouragement to read about Julie Elaychar’s concept of phatic labor. I thank also Patrick McKearney and Anna Zogas for including me in this special issue. Thanks also goes to the anonymous reviewers and the editorial team at Medical Anthropology, especially Lenore Manderson. who greatly helped in improving this article.

Notes

1. This research was approved by my institution’s IRB committee. The name of this organization has been changed, as have the names of individuals members. I have also occasionally modified descriptive details of people and places to protect privacy. My relationship with this community has greatly informed my thinking around autism and the needs and experiences of autistic adults, and has helped prepare me for my dissertation research on autism in France.

2. This echoes Silverman (2008:337) especially.

3. From a philosophical and personal perspective, many autistic commentators have forcefully rejected the ToM-deficit perspective of autism (e.g. Milton 2012; Yergeau 2013, 2018). Other commentators, including Dinishak and Akhtar (2013) have also shown the perniciousness of the ToM view of autism. Although the ToM-deficit theory is not as quite as dominant in biomedical research as it once was, at least in the US, it is still very much alive, often disguised in research on mirror neurons (e.g. Perkins et al. 2010).

4. Once again, I find Milton’s (2012) “double empathy problem” concept crucial here. “Neurotypical” people often start from the premise that social interaction which appears atypical is inherently flawed. I also find the approach that Laura Sterponi takes to autism particularly relevant and helpful. Her scholarship, which combines applied linguistics and developmental psychology, and which is associated with the Ethnography of Autism Project from UCLA, moves beyond viewing autism from a deficit-based perspective, while still acknowledging and evidencing from her data, that autism often causes serious impediments to communication. Sterponi focuses specifically at on the nuances of autistic language, including echolalia, which she provocatively theorizes to be a form of perspective taking. Her work requires one to think critically about how a deficit-based perspective has significantly shaped the way we see autism (Sterponi and de Kirby 2016; Sterponi et al. 2015a, 2015b; Sterponi and Fasulo 2010; Sterponi and Shankey 2014). See also Pamela Block’s (2015) important commentary on “presuming competence or incompetence” and how that shapes one’s findings.

5. Belek’s interlocutors often expressed confusion about whether the phatic question “How are you?” was a genuine question, and he notes how one person began responding to the question “Serious or small talk?”, an ingenious workaround (Belek 2018:174).

6. The contributions of Faye Ginsburg and Rayna Rapp to discussions of the role of digital world can play in the formation of in-person disability community-building are apt here. See, for example, their ethnographic description of disability film festivals, which they describe as “utopian spaces of both mediated kinship and cultural citizenship” (Ginsburg and Rapp 2015a:109). They argue that as important as disability films are for building disability community, the face-to-face interaction of people meeting together to screen them at film festivals cannot be overlooked.

7. I do not wish to overstate this point; there are studies of in-person autistic communities. However, I was continuously struck at the value placed on being out and being together, at a restaurant or other public space. This point is not one (to my knowledge) made in other anthropological accounts of autistic communities.

8. This can be contrasted to Francisco Ortega’s concern about identity politics within autism communities. He warns that in the neurodiversity movement “identity politics embodies the typologizing of brain difference at the expense of autistics’ own individual difference” (Ortega 2013:85). My research with Acomm has made me cautious of writing about considering the “neurodiversity movement” as one homogenous entity.

Additional information

Funding

This research was completed while in coursework at New York University. My doctoral studies at NYU were supported by a MacCracken Fellowship.

Notes on contributors

Cara Ryan Idriss

Cara Ryan Idriss is a Ph.D. candidate in Cultural Anthropology at New York University. Her dissertation research focuses on a French government-funded initiative to promote the inclusion of students on the autism spectrum in French universities. Since 2017 she has participated in pre-dissertation research with autistic-run social networks in the US.