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