Cultural Considerations in Autism: A Comparison of Autism Experiences in Kerala, India and Atlanta, GA USA

Background: Autism as a concept and diagnosis is increasingly recognized around the world, however little is known about how various cultural elements may impact the lives of those living and working with autism. Assuming that the ways autism is talked about, conceptualized, and treated is universal can lead to improper diagnoses and treatments and damage beneficial, collaborative relationships for research, intervention, and advocacy. This work can be improved by gaining a deeper understanding of the ways culture and autism intersect.  
Objectives: This project uses cross-cultural, qualitative research methods to identify critical variations in outcomes related to quality of life for children with autism and their families. These outcomes are then analyzed in relation to specific cultural elements most influential to differences in how autism is identified, treated, and understood to develop a model for how to improve the efficiency of future international autism work.
Methods: Thirty families and 45 professionals in Kerala, India and 17 families and 19 professionals in Atlanta, GA USA participated in the current research. Interviews and observations were conducted from June to December of 2011 in Kerala and March to September of 2012 in Atlanta. As autism is a new diagnosis in Kerala, the research included families of children who exhibited significant traits of autism yet who may not have an actual diagnosis. This caveat ensured the recruitment of comparable populations and the inclusion of possibly neglected families. Professionals were required to have been interacting directly with children with autism for at least 1 year and included physicians, psychiatrists, traditional healers, educators, and therapists. Grounded theory was used to identify common themes, which are then compared across and within each research site.
Results: Data analysis is ongoing, however preliminary results show that variations in access to resources, the ways people explain autism (explanatory models), and expressions of stigma are some of the most important areas of difference across the cultures researched. These, and other outcomes yet to be identified, will be analyzed alongside important cultural elements, such as nation, class, familial structure, treatment options, and urbanicity, to discuss the ways researchers, interventionists, and advocates can improve the efficiency and effectiveness of international autism work.
Conclusions: Although the current research is not fully completed, implications are far reaching. This work will improve international work and can also aid in interactions with diverse populations within our own communities. Additionally, this work can be extended to children with a variety of intellectual and psychiatric differences. This work not only fills a gap in the autism literature, but also one in medical anthropology where both autism and conditions of childhood are often neglected. The model created through this research will be easily followed by anyone embarking on autism work in diverse and international communities and will ensure this work is done with sensitivity and competence.