Professors bring autism expertise to Bolivia
Linda Watson and Betsy Crais are familiar with the extensive journey many Americans find themselves on when trying to acquire services for children with autism spectrum disorder.
As professors of speech and hearing sciences in the Department of Allied Health Sciences and part of UNC’s Program for Early Autism, Research, Leadership and Service (PEARLS), they have made autism screening, early detection and research the center of their academic lives.
This past summer, they took that experience abroad, traveling with a group to Bolivia, where autism services lag far behind what can be found in the United States.
There, they helped clear a path for the children and families who lack the robust, well-organized resources for help that are more common in America.
Partners of the Americas, an organization that links people in the United States with people in Latin American and Caribbean countries based on common interests, had identified a need for autism assistance in Bolivia. They contacted Patsy Pierce, a former UNC faculty member in speech and hearing sciences who had worked with the group concerning other childhood disabilities.
Pierce led them to Watson and Crais. At first the professors, who knew neither the language nor the culture of the country, weren’t confident their expertise would translate.
Unlike some medical outreach where vaccines, medicines, extra hands and equipment can make an immediate impact, breakthroughs in autism would have to come a different way.
Still, they agreed to help find that way. “We’re helpers. That’s just the profession we’re in,” Crais said.
Having an impact would mean bolstering the capacity to provide necessary services in Bolivia, Watson said. “We had to figure out what they needed first,” she said.
Addressing universal needs
Partners of the Americas developed a four-phase project. The first phase was to send Lucia Mendez, a Carolina Ph.D. student who is a native of Bolivia, to the cities of Santa Cruz, Cochabama and La Paz to conduct interviews and needs assessments.
While there were parent advocacy organizations in some cities, there was no national organization that focused on autism services. Consequently, many of the professionals were unable to connect with parents, and many parents were left in the dark about the disorder.
“With a lack of resources and awareness, it was hard to know where to turn and even if there was a place to turn,” Watson said. “We discovered they had some expertise there, but no way for parents, who might not even know much about their child’s disorder, to find it.”
Although the language and culture presented some obstacles, the needs of children and families struggling with autism were universal: challenging behaviors to manage, communication hurdles to cross, the need for advocacy in schools and a way to get a handle on assessments and diagnoses as early as possible.
The second phase of the project was a series of conferences in the three cities. Partners of the Americas helped provide the infrastructure and logistics to make the trip possible.
Watson and Crais, along with T.C. Bethea, a Carolina child psychiatry research associate; Rosario Roman, a speech-language pathologist from New Mexico; and Maggie Fitch, a recent UNC graduate, designed events to communicate information about the disorder and provide teaching tools for physicians, psychologists, teachers and parents.
Shortening the timeline
The group also met with the Ministry of Health and Sports in Bolivia and the Pan American Health Organization to talk about autism. After each of the conferences, which attracted hundreds of participants who passed around notepads to create listservs and networking groups, they staged discussion groups about possible next steps.
“We come from an academic setting, so we stay on top of the current research and information,” Crais said. “Bringing that to the people in Bolivia was a real shot in the arm, but while part of it was about providing knowledge, part of it was to shape the next steps. And we’ve certainly shortened the timeline for them, I hope.”
In the last 20 years, the increase in research dollars and public awareness of autism has seen incredible growth in the United States, Crais said. She hopes that progress has given the Bolivians confidence to know that, with the right tools and structure, they could see strides as well.
Before their work with Partners of the Americas, the pair had not thought much about how their work in the United States could affect another country. Now, they hope to be involved in the project’s next steps.
“This work has stretched me,” Watson said. “I’m thinking more now about how to change systems, how could or should research influence policy, and what are the skills needed to do that? What tools do I need to be able to go out and keep persisting in this partnership until we can put together what Bolivia says they need?”
Crais added that the group already could see a direct impact of their work. “We started a lot of ripples, that’s for sure,” she said.