UVA Professor Partners with Bolivian Communities to Enhance Autism Care

A few years ago, UVA autism researcher Michaela DuBay encountered a startling statistic: 95 percent of individuals with autism live in low- and middle-income countries, yet the majority of autism research is centered in high-income countries.

“That really struck me,” DuBay said. “We are studying such a small subset of people and systems of care, while the vast majority of individuals with autism live in places where we haven’t been doing research. And we know resources are drastically limited in low- and middle-income countries, which complicates support for autism care.”

This fact became a driving force behind DuBay's desire to collaborate with local communities in under-resourced regions to enhance autism care and support for families . As an assistant professor at the School of Education and Human Development and a researcher with the Supporting Transformative Autism Research initiative, DuBay is involved in several research projects in Bolivia— a country she has worked closely with since her doctoral studies. Recently, she received additional funding from the Center for Global Health Equity (CGHE) to expand her work.

“Working in a context where there are such limited financial resources feels that much more productive and useful,” she said. “That's been something that that has driven me, the opportunity to work together with my collaborators there, who are so motivated to improve the systems of care. They have ideas, expertise, and unique cultural knowledge, and I have the capacity to bring in funding and methodological expertise so we can study strategies that can have the biggest impact.”

Mapping the Autism Landscape

DuBay's connection to Bolivia began when her doctoral advisor connected her with an organization working on autism research in Cochabamba, a large city in the center of the country. On her first visit, DuBay witnessed firsthand the lack of resources and support for families of children with autism.  

In one of her current projects, DuBay and her team conducted a series of focus groups with Bolivian families, both with and without children on the autism spectrum, to gauge awareness and understanding of autism—including its causes, diagnostic processes, and available support.

The results aligned with DuBay’s personal observations.

“There’s a lot of misinformation, and unfortunately, a tendency to blame parents,” she says. “Many people think that autism is something parents cause, rather than a complex neurological condition caused by genetic and environmental factors.”

Getting an autism diagnosis is often a challenge in Bolivia, and even once a diagnosis is made, accessing appropriate care remains difficult. Many families face bureaucratic hurdles, such as the requirement for a Disability ID card to access services—something that can be difficult to obtain in an underfunded healthcare system.

In schools, children with autism are often misunderstood. “Instead of receiving support, they’re often labeled as 'misbehaving' and expelled,” DuBay said. For therapies, like speech and language services, the wait times are long—sometimes 3 to 4 months—and appointments are brief, lasting only 10 to 15 minutes.

“A lot of families feel pretty lost,” she said.

Improving Access to Diagnosis

Another project, funded by the Center for Global Inquiry and Innovation (CGII), focuses on one of the first hurdles parents face: access to diagnosis. Without a diagnosis, families often do not understand the cause of their child’s challenges and cannot begin the process of seeking therapies or other services.

In a trial of a 10-month professional development program, DuBay and her colleagues trained a group of diagnosticians from across Bolivia—including one physician from Cobija, a remote area of the country, where families previously had to drive 20+ hours or fly to the capital city for an assessment.

The training program consisted of a 3-day workshop on autism evaluation protocols, followed by monthly ECHO sessions—telehealth-based meetings where diagnosticians could discuss case studies together. The program also offered one-time webinars for professionals who can refer individuals for diagnosis and culminated in a session to connect diagnosticians with referring professionals, building a network of support.

With the training, more people are now able to give valid evaluation and diagnosis within their communities. Researchers saw an increase in their knowledge of autism, confidence in giving diagnoses, and increases in their professional networks and the number of evaluations they performed.

Empowering Parent Leaders

Another initiative funded by the UVA Brain Institute focuses on empowering parents of children with autism to lead support networks in their communities.

DuBay and her team identified parents with both autism advocacy experience and leadership potential. In May, they conducted an intense one-week training with five parent leaders, representing families across four cities and five regions of Bolivia, teaching them how to implement a 10-week intervention program. These leaders then ran their own intervention groups for parents of children with autism.

“I’m really excited about it,” DuBay said. “They've really made a supportive community among themselves, even though they’re all in different regions of the country.”  

Each group met weekly to discuss their children’s needs and practice new behavior management and communication promotion strategies. Additionally, a weekly ECHO session offered parent leaders the opportunity to receive guidance from local experts and their peer leaders.

One parent leader shared a breakthrough moment when a fellow parent used visual supports to manage her child’s behavior. A simple picture of children standing in line helped the child line up without resistance, easing a major source of stress for both the mother and child.

“We’re creating a beautiful community where we share so much,” another parent leader shared. She recalled one mother in her group, who had stopped taking her child to therapy for a year due to a lack of progress and emotional exhaustion. She signed up for the group as a last resort. “This mom had just quit for so long, but now she’s feeling more confident, and she’s committed to supporting other mothers who are just starting out.”

Expanding Networks of Support

Thanks to additional funding from CGHE and CGII, DuBay’s team is now expanding their efforts to serve a broader population. They are adapting the parent intervention model for teachers as well as extending their programs to include adolescents and young adults with autism.

DuBay credits her partners in Bolivia for helping identify the greatest needs and coming up with innovative ideas to address them. For her, the success of these initiatives lies in the community-driven approach: listening to the needs of families, working alongside local professionals, and helping build strong networks to ensure long-term, sustainable change.

“A lot of people in Bolivia supporting individuals with autism don’t actually know each other or know other professionals working in this sphere,” she said. “Often families are in a similar situation—not knowing anyone else who has a child with autism or where to turn for help.  

“In my work, the key has been to start by creating connections: building networks of support that facilitate access to resources and encourage collaboration across regions.”