The STAR Global lab (Supporting Transformative Autism Research initiative) at the University of Virginia is pioneering autism research. Dr. Michaela DuBay is leading projects in Bolivia that improve screening, assessment, early intervention, and treatment for autism spectrum disorders to address a critical lack of evidence-based autism care across the country.

State of care from family and professional perspectives

Our foundational studies to learn about the state of care for autism diagnosis and intervention in Bolivia found geographic, financial, professional, and societal barriers to accessing care. Through focus groups with caregivers of children with autism in Bolivia, we found that diagnostic and intervention services are concentrated in urban areas, and families (particularly those in rural areas) may have to travel to access services. For families that do have professional services available in their city, high costs of care and overcrowding create additional barriers. Schools do not provide therapeutic supports for children with disabilities, and many are excluded from public education. Many families simply are not able to access support for their child of any kind. Additionally, inconsistent experiences with diagnostic and treatment professionals underscored a lack of public awareness and empathy among some service providers. In general, autism is still misunderstood in many Bolivian communities. Societal stigma towards autism can also impact a family’s decision to seek a diagnosis or intervention for their child. In a study with referring professionals and diagnosticians in Bolivia, professionals described similar barriers impacting the current state of autism care, including a lack of public awareness, high costs of instruments and services, geographic limitations, and cultural and linguistic challenges.

Enhancing autism diagnostic capacity in Bolivia using an ECHO model

To address barriers to diagnostic care, our team implemented a professional training initiative with professionals who diagnose autism in Bolivia. We used an Extension for Community Healthcare Outcomes (ECHO) framework for the training, which offers virtual, case-base, community-centered professional development. We trained 96 diagnosticians (psychologists, medial doctors, and therapists) to conduct full evidence-based autism evaluations and provide diagnoses for families. Because Bolivia is a low‑middle‑income country with significant geographic remoteness, professional development that is virtual and low‑cost creates more accessible opportunities for education and training. Following the implementation of the ECHO program, we found improved diagnostic confidence, increased knowledge about autism, and more frequent professional collaboration among the participants. Professionals in more rural areas where able to begin administering evaluations and providing diagnoses rather than sending families to travel to urban centers. Improved autism evaluation in Bolivia is critical to meet the needs of families seeking support and solutions for their children with autism. The effectiveness of the ECHO model in strengthening evaluation and diagnostic services among the participants suggests its potential to create widespread improvements across Bolivia.

A peer-led approach to accessible autism support

Although there is an extreme scarcity of professional supports available to autistic children in Bolivia, families across the country have begun grassroots organizations, working together to support each other and advocate for support. To address the needs of families seeking therapeutic support for their children with autism while capitalizing on the local strength of families, we piloted a group-based peer-led parent-mediated intervention in Bolivia. The name of their program, Ayllu Yanapay (pronounced “eye-you yah-nah-pie”), means “Families Helping” in Quechua, an indigenous language spoken in Bolivia. The intervention addresses child communication skills and challenging behaviors as well as caregiver mental health. Five parent leaders, who ran the intervention groups, were parents of autistic children. They took part in an intensive training in Ayllu Yanapay, including hands-on practice with children. After their training, they facilitated 10 program sessions over the course of 10 weeks, providing 30 families with much needed support. The pilot test revealed that the Ayullu Yanapay intervention had positive impacts on both the parent leaders and the parent participants. Leaders and participants found the model to be effective and empowering, with improvements in caregiver mental health, child communication and behavior, and caregiver-child relationships. Ayullu Yanapay offered emotional support in the form of empathy, helpful strategies for challenging behaviors, and a sense of community for the participating families. Additionally, the parent-mediated model was reported to reduce stigma and promote honest conversations about autism among the participants. In general, families who participated in Ayullu Yanapay learned more about autism and felt more equipped to support their children as a result. After completion of the program, several of the parent leaders have continued the program or started new rounds of the program, suggesting the model could be sustainable without significant outside funding. Given the preliminary positive feedback on Ayullu Yanapay, we are currently implementing a teacher-mediated intervention program and have plans to design a similar program for caregivers of adolescents or young adults with autism, with the goal of continuing to provide essential support and community for caregivers of individuals with autism in Bolivia.

Future directions

While we have already made groundbreaking strides towards improving autism diagnostic and intervention services in Bolivia, future research will continue to expand these programs and evaluate their effectiveness. We are currently seeking funding to determine if the Ayullu Yanapay interventions are effective on a larger scale in Bolivia or in other low-resourced settings globally. Additionally, we are aiming to create a sustainable network of parent-to-parent programs to continue to address the major barriers to autism care in Bolivia. Through innovative research and culturally responsive collaboration, we are working towards more accessible, informed, and compassionate autism care for families across Bolivia.

Michaela DuBay, PhD., CCC-SLP
Assistant Professor Human Services Department
School of Education and Human Development
University of Virginia

2026

 

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The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.