Estudio de Patrones de Comunicación Infantil
Early Dyadic Communication Lab
Bolivian ASD Landscape Project
This project seeks to identify barriers and opportunities for improving autism care in Bolivia by exploring public perceptions and families' experiences with diagnosis and therapy, ultimately aiming to develop culturally relevant strategies that could enhance access to effective services across the country and beyond.
Project Design and Aims
This study aims to explore the state of autism care in Bolivia, a low-middle-income Latin American country. We conducted 6 focus groups with Bolivian parents: two groups had typically developing children and 4 groups had children with autism. By gathering qualitative data on public perceptions of autism and families' experiences with diagnosis and therapy, the research seeks to identify barriers and opportunities for enhancing diagnostic and therapeutic services. Given the limited research and resources in Bolivia, understanding the local landscape of autism care will help develop strategies to address gaps in awareness, professional training, and access to care. The insights gained could pave the way for implementing locally tailored interventions and serve as a model for similar regions in Latin America.
Voices from Bolivia: Parental Perspectives on Treatment for Autism Spectrum Disorder
Families of children with autism in low- and middle-income countries (LMICs) may face a variety of treatment-related challenges. Currently, there is limited research on interventions for autism spectrum disorder in LMICs, including Bolivia. In order to address the barriers faced by families seeking and receiving autism care in a particular LMIC, we must understand the current state of care. This qualitative study explored the treatment experiences of 25 caregivers of children with autism in Bolivia. Focus group data was analyzed to highlight themes related to gaining and maintaining access to treatment services, areas of satisfaction and dissatisfaction with the interventions received, and positive and negative academic experiences. These findings reveal strengths of the existing services as well as areas in need of additional support, offering suggestions to improve autism interventions in Bolivia and similar countries.
ASD Diagnostic Experiences in Bolivia
It is estimated that the majority of individuals with Autism Spectrum Disorder (ASD) live in low and middle-income countries (LMICs) (Pervin et al., 2022). However, the majority of research surrounding ASD is based on populations from high-income countries (HICs) (de Leeuw et al., 2020), with the World Health Organization (WHO) recognizing the marked shortage of ASD research in LMICs (Tomlinson et al., 2014). There are even fewer articles that discuss the full diagnostic experiences of those with ASD in LMICs, with many articles solely focusing on diagnostic barriers in LMICs. Such barriers include a scarcity of culturally appropriate diagnostic screening tools, a lack of overall awareness, and stigma (Adugna et al., 2020; Divan et al., 2021). In contrast, this project will focus on the overall diagnostic experiences of individuals with ASD in Bolivia. Bolivia is a land-locked LMIC and is one of the poorest countries in South America, where 60% of the population lives below the poverty line (Urizar et al., 2022). It is estimated that around 15% of Bolivians have a developmental disability, with 35% of this population consisting of children and adolescents (Urizar et al., 2022). To understand the experience of diagnosing ASD in Bolivia, this project will analyze 4 focus group interviews with 25 Bolivian caregivers of children with ASD who discuss what led them to seek an ASD diagnosis for their child, their experiences with professionals, and the impacts of their child’s ASD diagnosis. This project will result in an increased insight into the ASD diagnostic journey in Bolivia, which could reveal patterns evident in other LMICs.
Communication Skills and Autism Severity Impacts Access to School and Therapy for Bolivian Autistic Children
Autism spectrum disorder significantly impacts language, social interaction, and behavior, creating challenges for caregivers, especially in low-resourced settings like Bolivia. Our study of 372 Bolivian caregivers reveals that over 12% of autistic children do not attend school, and 22% lack therapy supports. Severity of autism and communication skills greatly influence school attendance, with more severe and non-verbal children being less likely to be included in any educational setting. Non-verbal children are also half as likely to receive support from a speech therapy professional. Here we explore these patterns, compare them to other low-resourced settings, and discuss potential solutions to improve access to education and therapy for autistic children in low-resourced contexts.
