The Emergence of Autism Spectrum Disorder in Costa Rica

Background:

In the U.S., the history of autism spectrum disorder can be traced to deinstitutionalization and the crisis of psychiatry that preceded the DSM-III in 1980. Parents of children with autism, some of them psychiatrists and psychologists, influenced the expansion of diagnostic criteria that would contribute to the autism “epidemic” of the 1990s (Eyal et al. 2010). But the history of autism does not end in the U.S.; as the category continues to be adopted globally, there is a collision between Western diagnostic criteria and local culture (Grinker 2007). The aftermath of this collision has been partially documented for autism, especially in India (e.g., Daley 2004) and South Korea (e.g., Grinker and Cho 2013), but nowhere has the lead up to the adoption of the category been described, including the first diagnosed case and the eventual diffusion of autism in the new setting.

Objectives:

This paper considers the adoption of the diagnostic category of autism in Costa Rica, where cases were recruited in the early-2000s for a genetic study. What led to those first diagnosed cases? How do “networks of expertise” (Eyal et al. 2010) operate in relation to the category? How are the autism experts in Costa Rica tied to networks of expertise in the U.S. and abroad?

Methods:

The present research stems from a collaborative project with the Hospital Nacional de Niños (HNN), the diagnosing clinic for all children in Costa Rica. Interviews were conducted with the primary diagnosing physician—a developmental pediatrician—and other staff at the hospital, and medical files of early cases of autism were reviewed. Finally, all genetic studies on human populations in Costa Rica leading up to the autism study were complied, and connections among the 108 authors were mapped in a two-mode network diagram.

Results:

The network diagram reveals a dense interconnected network of 16 genetic studies, beginning in the early 1990s, involving collaboration between physicians, microbiologists, statisticians, and cytogeneticists in Costa Rica and researchers in the U.S., Canada, and several countries in Europe. A pharmaceutical company was the source of one bipolar study, but the remaining studies focused on Costa Rica because of its founder population. Almost by happenstance, a California author initiated the autism study after moving to an autism research center in New York and then hearing that the pediatrician, who had completed a residency in Boston, was inquiring about a possible autism case. The pediatrician was recruited for case recruitment, and after completing an ADOS course in the U.S., she eventually devoted time each week for diagnosing autism and began training other clinicians to consider the diagnosis.

Conclusions:

The importation of autism in Costa Rica was likely inevitable, but this study illustrates how network ties to research institutions with substantial financial resources can drive the diffusion of diagnostic practices and categories. In no way does the process appear exploitative or paternalistic; rather, both sides benefit from the collaborations, and medical practices in the U.S. are effectively transmitted to small countries with limited resources.