Autism in Translation: An Intercultural Conversation on Autism Spectrum Conditions
Edited by Elizabeth Fein and Clarice Rios
Palgrave Macmillan, 2018. 304 pages.
Autism in Translation: An Intercultural Conversation on Autism Spectrum Conditions—an edited collection out of the Society of Psychological Anthropology’s (SPA) Culture, Mind and Society series—aims to contextualize the different social and political histories of, treatments for, and experiences of autistic people and their families in the United States, Brazil, and Italy. The volume, which grew out of an SPA and Lemelson Foundation-funded conference in Rio de Janeiro in 2015, organized by the collection’s editors, Elizabeth Fein (Duquesne University) and Clarice Rios (Federal University of Rio de Janeiro), is a welcome attempt to place psychological anthropology and the South American Collective Health tradition—a intellectual tradition which looks at the relationship between individual health and social, political, and economic forces—in conversation (2). Beyond being cross-cultural, the volume is cross-disciplinary, with contributions from those working in the cultural, psychological, and linguistic anthropological traditions, but also from an ethnomusicologist, and from others working in and/or studying psychiatry, psychoanalysis, and psychotherapy. Many of the most well-known names in autism and anthropology (such as Pamela Block, Ariel Cascio, Roy Richard Grinker, and Francisco Ortega) have contributions in the volume, often written collaboratively with one or more scholars from a country other than their own. Throughout the volume the contributors conceptualize autism differently from each other, refuse to define autism solely through a biomedical lens, and are attentive to how local culture intersects with autism: this is the book’s great strength. At the same time, the reader may detect an underlying tension in the book— for as much as this volume is meant to be a dialogue between South American Collective Health and North American-based psychological anthropology, a closing commentary on “Psychological Anthropology and the Study of Disability”, written more in the vein of applied and policy-oriented anthropology, seems keen to definitively name autism as a brain-based biological condition, and to quantify diagnoses, and the effectiveness of standardized autism treatments. Additionally, an enhanced level of reflexivity on the part of some of the contributors to the volume about their role in the reification and globalization of autism as well as greater engagement with critical disability studies and critical autism studies—particularly more work from autistic scholars— would have provided a missing perspective, and partially ameliorated tensions within this otherwise excellent collection.
The volume is divided in four sections: “Political histories of autism, autism advocacy, and the connection to psychiatric reform and de-institutionalization in the U.S., Brazil, and Italy”; “Voice, Narrative and Representation”; “The Autism Concept”; and closing commentary from preeminent psychological anthropologist Thomas Weinser, and Dawn Prince Hughes, an anthropologist and primatologist well known for her popular writing about her experiences living on the autism spectrum. Throughout the volume, the writing is clear and concise, and although all the sections are in conversation with each other, each could certainly be read independently.
The first three sections are bookended with insightful commentary by Francisco Ortega, Laura Streponi, and Ariel Cascio, respectively. Well beyond summarizing the chapters, these commentaries raise salient theoretical concepts and are the best part of the entire volume. Ortega, writes about tensions between standardized “evidenced-based” autism interventions, often emanating from the Global North, and culturally-specific local interventions, including, in the case of Brazil, the use of psychoanalysis. Yet, he calls on readers to not see the this as a strict dichotomy between global and local. Instead, taking a cue from Aihwa Ong (Collier and Ong 2005) he encourages readers to view these tensions as “global assemblages” and to find the productive possibilities of “negotiations and spaces beyond such antagonism” (91). Streponi reflects on autistic engagement with the world through language, which is often deeply connected to the embodied sensorium. She rejects conceiving of autistic language as defective, and instead looks at its inherent agentive possibilities. Following Ochs (2012), she writes, “Autistic modes of engagement with language subvert the referential hegemony to uncover additional dimensions of significance and experience of language” (177). Cascio’s masterfully discerning commentary discusses the social construction of autism and reminds readers of a fundamental and basic point, yet still one worth stating explicitly: positing a social constructionist view of autism “does not mean autism is not ‘real’” (251). Cascio also provides a level of reflexivity, which is missing from some of the other contributions by explicitly pointing out that as scholars and practioners, “We walk a fine line in taking these critical perspectives on autism and yet at the same time participating in the autism industrial complex” (258).
A major highlight of the second section of the volume on “Voice, Narrative and Representation” is Fein’s “Autism as a Mode of Engagement”, a chapter which theorizes autism as a particular mode of engagement with the material world. The bulk of the chapter provides ethnographic vignettes based on interviews with three autistic interlocutors: young men ranging in age from eleven to twenty, and her reflection on being trained as a psychologist to administer the diagnostic tool Autism Diagnostic Observation Schedule (ADOS). Fein describes how arbitrary the results of this “empirical” diagnostic tool can be. She also shows, through a careful analysis that while ADOS attempts to measure spontaneous and flexible social interactions, it actually measures the ability to respond to highly specific social norms while making these responses seem authentic.
The third section of the volume is centered around autism as a concept, and how varying conceptions of autism have meaningful material impacts on people’s everyday lives. Rios, through an exploration of a parents’ association in Rio de Janeiro, and the search for and construction of various forms of expertise on autism, provides another richly ethnographic chapter. Perhaps Rios’ most important contribution is that she addresses issues of inequality and how they intersect with autism. For example, Inês, one of her interlocutors, and one of the founders of the parent group she explores, is a migrant to Rio from a poorer part of Brazil. When her oldest son was diagnosed with autism, after years of unsuccessfully seeking a diagnosis, the doctor refused to explain what such a diagnosis would mean for her family, assuming she was too ignorant to understand. She went on to co-found a parent association that has supported numerous families who have sought expertise, and in turn become, experts on autism.
Grinker’s chapter in this section on the commodification of autism, while one of the most astute of the entire volume, may have benefited from greater reflexivity [1]. He starts the chapter by building on Disability Studies scholar Anne McGuire’s insightful commentary on the “autism industrial complex” (2016). Grinker reflects on how autism has become a global business fueled by what philosopher Ian Hacking calls a “looping effect” (Hacking 1995). A growing rise in the number of people “living under the diagnosis” of autism – to borrow Emily Martin’s (2007) artful term – leads to an ever-increasing number of autism experts; in turn, autism experts diagnose, treat, and work with more and more autistic people. Autism diagnostic tools, treatment, advocacy, and research are costly. Governments, private corporations, research institutions, NGOs, and philanthropic organizations fuel, and in turn, are fueled by this industry. In the process, autism is reified and becomes a commodity. Given that Grinker was previously funded by the global NGO, Autism Speaks to take part in a large-scale epidemiological study of autism in South Korea validated by “North American experts” (Autism Speaks 2011), Cascio’s commentary that “We walk a fine line in taking these critical perspectives on autism and yet at the same time participating in the autism industrial complex” (258) seem appropriate. It would have been helpful to have a reflection from Grinker about the privileging of autism expertise from the Global North, and how someone could be wary of standardization and quantification, while also seeing it as necessary for improving educational access, and the full inclusion of autistic individuals into society.
Autism in Translation’s goal is for those studying autism and working in the field of autism to learn from each other in a cross-cultural and cross-disciplinary exchange. All the contributors are cognizant of the reality that autism is shaped by, and experienced differently, in different cultural contexts. In this way, it would seem, autism resists standard quantification. Yet, Thomas Weisner’s commentary in the fourth section of the volume, on the intersection of psychological anthropology and the study of disability makes the case for empirical cross-cultural diagnoses of and treatment for autism. He writes that the “impacts [of autism] and their many consequences clearly are empirical generalizable facts” (266). He goes on to say that globally “families and individuals will require social support, benefactors, and an improvement not only in tolerant cultural beliefs and scientific evidence about the disorders and improved treatments…” (270). One could argue that in this chapter, Weisner is calling on psychological anthropologists to seek these “empirical facts”, putting scholars even closer to that fine line Cascio warns of.
Autistic sociologist and Critical Autism Studies scholar, Damian Milton, has written that autism has become a global “industry that silences the autistic voice from any participation, other than in the form of a tokenistic gesture” (Milton 2012, 885). With the exception of Dawn Prince Hughes’ closing commentary, and Enrico Valtellina, who writes, from personal experience about Asperger’s as both an event and a diagnosis, and how over time, he no longer identifies with an Asperger’s diagnosis, there are no other autistic voices in the volume. With issues of representation central to discussions of autism research and policy today, this fact, and the choice to have Prince Hughes’ commentary placed at the very end of this lengthy book is, at the very least, a missed opportunity.
Ultimately however, this is a remarkable volume, unprecedented for bringing together scholars from the Global South and North. For over a decade, linguistic anthropologists, particularly at UCLA under the tutelage of Elinor Ochs and the Ethnography of Autism Laboratory have been researching autistic sociality. Likewise, it has now been more than a decade since psychological anthropologist Roy Richard Grinker’s seminal cultural history and personal memoir of autism in his family in Unstrange Minds: Remapping the World of Autism (2007) was released. And now finally, it seems autism, and the lives of those living under the diagnosis of autism, and their families in the Global South, have been brought into conversation.
[1] To be fair, Grinker has offered an enhanced level of reflexivity in other publications. For example (Grinker 2007).
Works Cited
Autism Speaks (2011). New Study Reveals Autism Prevalence in South Korea Estimated to be 2.6% or 1 in 38 Children. [online] Available at: https://www.autismspeaks.org/press-release/new-study-reveals-autism-prevalence-south-korea-estimated-be-26-or-1-38-children [Accessed 9 Mar. 2019].
Collier, Stephen J., and Aihwa Ong. 2005. “Global Assemblages, Anthropological Problems.” In Global assemblages: Technology, Politics, and Ethics as Anthropological Problems, edited by Stephen Collier and Aihwa Ong, 3-21. Malden, MA: Wiley-Blackwell.
Fein, Elizabeth, and Clarice Rios, eds. 2018. Autism in Translation: An Intercultural Conversation on Autism Spectrum Conditions. Cham: Palgrave Macmillan,
Grinker, Roy Richard. 2007. Unstrange Minds: Remapping the World of Autism.New York: Basic Books.
Hacking, Ian. 1995. “The Looping Effect of Human Kinds.” In Causal Cognition: Multidisciplinary Debate, edited by Dan Sperber, David Premack, and Ann James Premack, 351–383, 384–394. Oxford: Clarendon.
Martin, Emily. 2007. Bipolar Expeditions: Mania and Depression in American Culture. Princeton: Princeton University Press.
McGuire, Anne. 2016. War on Autism. On the Cultural Logic of Normative Violence. Ann Arbor: University of Michigan Press.
Milton, Damian E.M. 2012. “On the ontological status of autism: the ‘double empathy problem’.” Disability & Society 27(6): 883-887.
Ochs, Elinor. 2012 “Experiencing Language.” Anthropological Theory 12(2): 142-160.
Cara Ryan Idriss is a Ph.D. student in Cultural Anthropology at New York University. Her research explores autism and adulthood, including autistic sociality, and how ever-changing understandings of autism create new possibilities for autistic personhood.