Autism Spectrum Disorder (ASD): Disease Conceptualization and Parental Roles in Puerto Rico

Background:

Autism Spectrum Disorder (ASD) is a broad category encompassing a wide array of developmental delays, social-interactional differences, and sensory sensitivities. It is a diagnosis most frequently made during childhood and carries implications not only for the ASD child, but also for the broader community network raising and supporting them. Recent anthropological research has shed light on the complexities of autism conceptualization as both disease and expression of neurodiversity; along with parental conceptualization of autism as constructed around dominant biomedical and sociocultural paradigms. However, studies remain particularly scarce concerning the context of Latin America.

Objectives:

This study investigates how ASD parents in Puerto Rico conceptualize autism. The specific aims of this project are as follows: 1) to investigate how ASD parents frame and construct their conceptualization of autism as a disease and as a marker of identity, 2) to examine the dynamics of communication between ASD parents and treatment providers, noting in particular how each work together to navigate social-interactional and behavioral differences and/or challenges within the health care and educational setting, and 3) to examine how ASD parents advocate for their child and how they may stratagize to gain access to limited resources amidst a struggling socioeconomic and political environment.

Methods:

This study consists of preliminary dissertation ethnographic fieldwork conducted in May 2017 in Puerto Rico. Participant-observation was carried out at ASD-focused educational/therapeutic facilities and ASD-related community events. After obtaining written consent, 50 semi-structured interviews were conducted in either English or Spanish (dependent on subject's preference) with ASD parents and/or ASD community members, including extended family, treatment providers, and ASD organization members. Data analysis is in progress as interviews are coded for subject-specific and general thematic narratives.

Results:

Pervasive themes among the subject narratives concerned health/educational department management, inefficient government bureaucracy, and the current economic crisis faced by Puerto Rico. The ASD community of Puerto Rico struggles with the discontinuity of patient care, as the responsibility for the health and welfare of ASD children transfers from the Health Department (ages 0-3 years) to the Education Department (ages 3-21 years). There is little to no public institutional support or structure available for ASD children that age out of the system. ASD parents are placed in a role of advocate for their child to access medical and educational resources. Subject interviews demonstrated this role to be particularly challenging for individuals who lack financial or social resources to access legal aid or navigate the complex system of care on the island. Puerto Rico is currently experiencing dire economic struggle and mass exodus of the population to mainland USA. Subject interviews reveal how this has further marginalized the island's ASD community within this nation in crisis.

Conclusions:

Puerto Rican ASD parents and community members both construct and work within complex disease conceptualizations of autism. How ASD parents are thinking about autism influences how they approach navigating a difficult medical, educational, and legal system in order to gain access to limited resources for their ASD children.