Special Issue Highlight: The Anthropology of Autism, Part 2

In this week’s entry, we continue our issue highlight on the current special issue of Culture, Medicine & Psychiatry. Released in June 2015, the latest issue explores anthropological research on autism, both across the world and between communities of people with autism and their families. Like the first part of this feature, we will explore two articles in the current special issue.

 “But-He’ll Fall!”: Children with Autism, Interspecies Intersubjectivity, and the Problem of ‘Being Social’

Olga Solomon

Autism-spectrum disorders (ASD) are described in diagnostic manuals as an impairment of one’s ability to successfully relate to and understand other people. Yet this definition of autism relies on a specific notion of sociality that, Solomon argues, becomes much more complicated when considering autistic individuals’ interaction with therapy animals.

Solomon compares two cases that highlight autistic children’s understandings of what it means to be social: one without animals, and another with animals featured prominently in the therapeutic intervention. In the first instance, a child she calls Rosalyn is being tested in a psychological facility. The child attempts to engage in conversation with the psychologist and her parent, but is dismissed. She also shows a picture she has drawn to the psychologist, yet is again dismissed and offered a standardized picture book to complete another diagnostic task. Rosalyn’s own experiences and perspectives are cut from the diagnosis, while artificial tasks and measures that are foreign to her—such as the picture book—are substituted for “real” social materials worth engaging with.

Unlike Rosalyn, whose encounter with the psychologist in the office offers her little opportunity to demonstrate her connections to other people on her own terms, a girl named Kid has a much different experience in animal-based therapy. While Kid has no friends in school and struggles to engage socially, she demonstrates concern for her therapy dog. She worries in one interaction that she might drop him from her lap, and in another vignette, notes to her family that she fears the family dog might be jealous of her interactions with the therapy dog.

In Kid’s case, the presence of animals provided an opportunity for her to demonstrate her understandings of their emotional state and to express her feelings towards them. Rosalyn likewise attempted to engage with her psychologist and mother while in the office, but her attempts to interact were brushed aside and supplanted with artificial testing activities that did not elicit an empathetic response.

Solomon posits that these findings align with theory after the post-human turn, whenever the human actor became destabilized as the center of all social interaction and new notions of sociality began to consider interspecies engagements, particularly in the works of Donna Haraway. When animals enter the picture, these non-human actors prove central to understandings of social relationships that might not otherwise be seen in strictly human-to-human interaction, as in the case of Rosalyn.

Click here for the full article: http://link.springer.com/article/10.1007/s11013-015-9446-7


Making Meaningful Worlds: Role-Playing Subcultures and the Autism Spectrum

Elizabeth Fein

Like Solomon, Fein explores another case where individuals on the autism spectrum learn to interact and engage with others on their own, productive terms. Fein draws on ethnographic research of a summer camp for teens with autism, where they role-play as magicians, scientists, and other fantastical characters.

At the camp, the teens posit themselves in new social roles, explore new identities, and forge relationships with others in novel ways. They largely practiced live-action role playing (LARP), stylized as LARPing, an activity where participants dress and act as mythical characters in a live-action fantasy game. The founders of the camp, called the Journeyfolk, realized that ASD youth were drawn to these fantasy role-playing communities, where a shared mythology and a story arc that pitted villains against heroes created a common social space for participants.

Although participants of the games had unique behavioral qualities—in one team, for instance, there was someone who jumped on other players and another with intense hyperactivity—they accepted that they had to overcome these individual differences in order to work together. Likewise, older players who gravitated to the roles of heroes in the LARP events were often instructed to act as villains: challenging them to take on new roles beyond their own desire to act as a specific character.

The game and the camp provided a strong external structure that guided participants through tasks and activities: structure that individuals on the autism spectrum often need to navigate social situations effectively. Conversely, it also promoted a storytelling environment where characters that teens acted struggled with deep, internal, psychological quandaries, such as battling off evil spirits that possessed team mates, and struggling with being a mythological human/inhuman hybrid being. They could draw upon their real-life struggles, such as anger issues, in order to create characters that—like them—were challenged to solve problems in light of these personal difficulties.

Fein concludes, in part, that these camps both provide the structure and the social patterning that autism-spectrum individuals need to engage with others positively, while also encouraging neurodiversity by valorizing fringe nerd culture and allowing individuals to create characters that are informed by the behavioral patterns and psychological struggles of those who play them in the games.

To access this article, click here: http://link.springer.com/article/10.1007/s11013-015-9443-x

To access all of the articles in this issue, click here: http://link.springer.com/journal/11013/39/2/page/1

Special Issue Highlight: The Anthropology of Autism, Part 1

The newly released June 2015 special issue of Culture, Medicine & Psychiatry addresses anthropological studies of autism from around the world, including the United States, India, and Italy. In this installment and the next entry on the blog, we will explore four articles published in the latest issue. This research spans the fields of disability studies, psychological anthropology, and medical anthropology, and touch on themes of identity, subjectivity, family caregiving, and community. Here, we will focus on two articles in this publication.

Parenting a Child with Autism in India: Narratives Before and After a Parent–Child Intervention Program

Rachel S. Brezis, et al.

Throughout India, there are limited social services and support networks for individuals with autism and their families. Furthermore, neurodiverse (and mentally ill) individuals have historically been cared for in private by family members in India, where they are hidden from the community and may be treated as a mark of shame on the household. However, despite these challenges, Indian parents of children with autism are increasingly seeking out professional programs that educate them about autism and appropriate caregiving strategies.

One such program in New Delhi, the Parent-Child Training Program (PCTP), evidences the changing view towards autism in India. The program aims to educate parents about autism and, in so doing, encourage them to educate others about the experience of raising a child with the condition. Parents bring their child to PCTP and learn alongside them. As the first program in India to provide such training, its examination proves essential in understanding the way that various populations (here in India) are now approaching the shifting landscape of autism.

Brezis and colleagues studied the PCTP to discover how the training was altering parents’ perceptions of autism and relationships with their children. They interviewed 40 pairs of parents at the beginning and end of the 3-month program, encouraging the parents to speak for five minutes without prompts regarding their child and their relationship to the child.

The authors found that parents who participated in the three-month program were less likely to describe their children in relation to an assumed “normality,” although mothers proved to be more likely than fathers to self-reflect on their relationship with their child. Similarly, while parents described their child’s behaviors no less frequently in the second and final interview, they did not note behavior in relation to other individuals’ behavior perceived as “normal.”

To learn more about this research, click here for a link to the article: http://link.springer.com/article/10.1007/s11013-015-9434-y


Custodial Homes, Therapeutic Homes, and Parental Acceptance: Parental Experiences of Autism in Kerala, India and Atlanta, GA USA

Jennifer C. Sarrett

Like Brezis et al, Sarrett also investigates Indian caregiving and parental experiences of autism, while comparing this context to autism and the family in the United States. In both cases, Sarrett asks how the home as space and place impacts the meaning of disability for people with autism. She interviewed seventeen caregivers in Atlanta and thirty-one in Kerala, and observed seventeen families in Kerala and five families in Atlanta who had also participated in interviews. Sarrett concludes that though there are some similarities in the constellation of autism-specific and biomedical services that may be available to Keralite and American families, the arrangement of households themselves drastically changes the way autistic children are cared for in each location.

In Kerala, for example, mothers serve as both full-time child caregivers as well as domestic laborers, often spending long hours washing clothes by hand and cooking from scratch. Keralite children with autism have few interactive toys that are specifically geared to engaging them, few devices that may control their movements and behaviors (such as baby gates) or assist them in communication (such as an electronic device that voices requests for food or other needs.) Such tools are common in Atlanta households. However, they have consistent household care from mothers who manage all domestic labor with no outside employment.

Households with autistic children in Atlanta, meanwhile, are specifically retrofitted for the needs of the child. There are picture cards that children may use to show caregivers and parents an item of food that they wish to eat, as well as a calendar in the kitchen or office that marks doctors’ appointments and family events geared for socialization with the autistic child. Baby gates, cabinet locks, and other safety devices ensure the child does not come into contact with household dangers (such as kitchen knives and cleaning solutions.)

In sum, these tools are designed to change and improve the behavior of the child. The home itself is structured to be a therapeutic space: requiring material and financial resources that Keralite families do not have to physically adjust their households. Instead, Keralite families focus not on improving or altering an autistic child’s behavior, but rather emphasize consistent caregiving for the child. In both cases, however, parents are committed to creating an environment (be it material or social) in which a child with autism can be integrated into the activities of the household, and thus into the family’s social world. Despite cultural, and certainly resource, differences between Indian and American families, they share a common commitment to building home support systems for their developmentally disabled children.

Click here to access the full text of this article: http://link.springer.com/article/10.1007/s11013-015-9441-z

To access all of the articles in this issue, click here: http://link.springer.com/journal/11013/39/2/page/1