Apologies for the far-too-long hiatus in posts. Things should be getting back to normal in the coming weeks.
In any case, the March issue of Ethos was titled “Rethinking Autism, Rethinking Anthropology,” and was guest edited by Nancy Bagatell and Olga Solomon. It looks like a fantastic special issue, including work by a number of scholars we’ve written about in the past – such as Elinor Ochs and Sharon Kaufman.
Moreover, at least at the moment all of the articles in this issue are available free-of-charge. Here are the titles and abstracts:
Olga Solomon, Nancy Bagatell?, Introduction: Autism: Rethinking the Possibilities
This special issue of Ethos brings together the work of scholars from multiple disciplines including anthropology, occupational science, and education. The authors share two main goals. First, this interdisciplinary collection of articles highlights the importance of rethinking research on autism. Each article encourages movement away from dominant biomedical discourses that focus largely on symptoms to a more phenomenological and ethnographic stance that addresses experiences of living with autism. The second goal is to rethink possibilities for social interaction and participation for people with autism. In this introduction, we briefly review current biomedical accounts of autism as a disorder that affects social cognition and explore the importance of rethinking these assumptions. We suggest that this discussion is particularly well suited for psychological anthropology’s concerns with the psychological and the social in an individual’s experience and place in society.
?Sharon R. Kaufman, Regarding the Rise in Autism: Vaccine Safety Doubt, Conditions of Inquiry, and the Shape of Freedom
Beginning in the 1980s in the United States, a growing number of parents of children diagnosed with autism and other problems related to neurodevelopment began to suspect that their children’s conditions were caused by, or somehow related to, vaccinations. By the early 21st century, the idea that something about childhood vaccinations are the cause, may be the cause, or may be one contributing factor in the apparently rising numbers of children with neurodevelopmental problems had spread widely. This article traces parent anxiety about a connection between autism and vaccines. It illustrates the ways in which a large number of parents think about potential risks of vaccines and make decisions about immunizing their children. It focuses on their doubt and responsibilities, and shows how they negotiate their relationship to medical expertise and the ethics of citizenship. Overall, this article explores the rise of autism into public awareness—as a mutable object of knowledge, a protean disease category, and an exemplar of the condition of uncertainty today—to show the limits of risk assessment as a way of managing life.
Nancy Bagatell, From Cure to Community: Transforming Notions of Autism
For many decades, autism has been viewed as a biomedical condition, highlighting deficits in social interaction and communication. Based on ethnographic data from a study of adults with High Functioning Autism, this article explores the emergence of the autistic community, a group composed of people with autism, who are challenging these notions. First, I suggest that three historical trends can be linked to the emergence of this community: the widening of the autism spectrum, the strengthening of the self-advocacy movement, and the explosion of technology. Drawing from ethnographic data, I describe the community, including its discourse, occupations or activities, and lexicon. Although the autistic community has grown over the past decade, it has also faced resistance from both inside and outside the group. I investigate this tension, arising in a debate regarding whether autism is a condition in need of a cure or a way of life and suggest that the autistic community has the power to transform notions of autism. Implications of this research for psychological anthropology’s notions of sociality are introduced.
Dawn Eddings Prince?, An Exceptional Path: An Ethnographic Narrative Reflecting on Autistic Parenthood from Evolutionary, Cultural, and Spiritual Perspectives
As the recognition of Autism Spectrum Disorder has increased, professionals and academics have theorized its epidemiology and pathology. As valuable as those perspectives are, rarely is the voice of the autistic person heard as a source of understanding. In this ethnographic article, I share my story as a person on the spectrum. I hope to illuminate not the disability of autism, but the reward of the struggle and the gifts that are part of a different way of being. As I reflect on the transformations that have occurred in my life, it becomes clear that my most important role is that of a mother to a son who would himself be diagnosed as autistic in a different context. This narrative offers thoughts about the complex challenges of living with autism—not only from a professional and academic standpoint but also from a deeply human one as well.
Elinor Ochs, Olga Solomon?, Autistic Sociality
This article is based on our decade-long linguistic anthropological research on children with autism to introduce the notion of “autistic sociality” and to discuss its implications for an anthropological understanding of sociality. We define human sociality as consisting of a range of possibilities for social coordination with others that is influenced by the dynamics of both individuals and social groups. We argue that autistic sociality is one of these possible coordinations. Building our argument on ethnographic research that documents how sociality of children with autism varies across different situational conditions, we outline a “domain model” of sociality in which domains of orderly social coordination flourish when certain situational conditions are observed. Reaching toward an account that comprehends both social limitations and competencies that come together to compose autistic sociality, our analysis depicts autistic sociality not as an oxymoron but, rather, as a reality that reveals foundational properties of sociality along with the sociocultural ecologies that demonstrably promote or impede its development. In conclusion, we synthesize the “domain model” of sociality to present an “algorithm for autistic sociality” that enhances the social engagement of children with this disorder.
Karen Gainer Sirota, Narratives of Distinction: Personal Life Narrative as a Technology of the Self in the Everyday Lives and Relational Worlds of Children with Autism
?Over the years, children with autism have often been portrayed in the professional literature and the popular media as asocial creatures bereft of words and subjective worldviews. Alternatively, I examine the lived contexts in which children with autism spectrum disorders actively engage with family members in coconstructed narrative recountings of personal life events, and are apprenticed into culturally consonant genres of life narrative as a technology of the self. Employing naturalistic video- and audio-taped data documenting the everyday lives of 17 U.S. children diagnosed with high functioning autism and Asperger’s syndrome, I demonstrate how everyday narratives of personal experience offer a vehicle for expression of the children’s subjective life worlds and a venue for self-presentation and intersubjective attunement in which social and moral distinctions of normativity and difference are at stake. These deeply interactive self-fashioning processes highlight and make visible the dynamic intersubjective practices that contribute to human subjectivity.
?Laura Sterponi, Alessandra Fasulo?, “How to Go On”: Intersubjectivity and Progressivity in the Communication of a Child with Autism
Through the lens of a case study of the spontaneous verbal interaction of a five-year-and-ten-month-old child with autism, this article offers a reflection on the psychological and epistemological underpinnings of human communication. In particular, in the analysis of verbal exchanges between a child with autism and his caregivers, we discuss formulaic talk and verbal play and the relation of these with sequential progressivity, expressions of personal stance, and intersubjectivity. The analysis allows us to unearth the inherent precariousness and unpredictability of communication and how it is perpetually vulnerable to failure. We suggest that the intrinsic risk of breakdown in intersubjectivity cannot be conceived of as a threat to successful communication, but rather, as an attribute of sequence progressivity and an essential component of communication as encounter with the other, grounded on mutual trust.
Olga Solomon?, What a Dog Can Do: Children with Autism and Therapy Dogs in Social Interaction
For almost 50 years specially trained dogs have been used in clinical and family settings to facilitate how children with autism engage in social interaction and participate in everyday activities. Yet little theoretical grounding and empirical study of this socioclinical phenomenon has been offered by social science. This article draws on interdisciplinary scholarship to situate the study of the therapeutic use of dogs for children and teens with autism. Two case studies of service and therapy dogs’ mediating social engagement of children with autism in relationships, interactions, and activities illustrate how dogs support children’s communication, their experience of emotional connection with others, and their participation in everyday life. Theorizing this process enriches approaches to sociality in psychological anthropology.
Mary C. Lawlor?, Commentary: Autism and Anthropology?
The articles in the Special Issue, “Rethinking Autism, Rethinking Anthropology,” provide a ground for demonstrating substantive contributions to understandings of autism and mark the dilemmas and tensions inherent in anthropological approaches. Comments explore the ways in which authors attend to demarcation of the social world, establishment and negotiation of expertise, juxtaposition of autism as a phenomenon of interest and as an exemplar of sociality, and management of structured and improvisational approaches to the study of engagements in real life. The dilemmas and tensions that are briefly described here are only a partial list of still uncultivated spaces where autism and anthropology can–should–do meet.
Roy Richard Grinker, Commentary: On Being Autistic, and Social
In psychology and allied disciplines, autism has been erroneously conceived as a disease that precludes meaningful social behavior. Anthropologists are beginning to address this problem by rejecting the narrow confines of what constitutes human social functioning, and by showing the complex ways in which autistic children and adults participate in and contribute to their societies. At the same time, anthropologists have begun to contextualize public debates about autism prevalence and etiology in historical and cultural processes. This commentary identifies two major disjunctions in contemporary public debates about autism: the first between a depersonalized form of knowledge constructed by science and a narcissistic claim for knowledge that privileges anecdotal, personal experience; the second between a “mainstream” discourse on science and a new discourse on science that explains autism in terms of environmental insults. These new environmental perspectives, especially those that concern vaccine damage, can be situated in late modernity. They mediate between a nostalgic memory of ontological certainty, trust, and authenticity and a postmodern world characterized by a loss of faith in scientific institutions.
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