As Speech and Hearing Sciences Professors 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. In the summer of 2012, they took that experience abroad, traveling with a group to Bolivia, where autism services lag far behind what can be found in the U.S.
Partners of the Americas, an organization that links people in the U.S. 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 SHS faculty member, who 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,” Crais said. “That’s just the profession we’re in.”
Partners of the Americas developed a four-phase project. The first phase was to send Lucia Mendez, a Speech and Hearing Sciences PhD student (Class of 2013) 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.”
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, and many other sponsors from the U.S. and Bolivia provided funding 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.
In La Paz, the group also met with the Ministry of Education, the Ministry of Health and Sports 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 U.S., 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, Watson and Crais had not thought much about how their work in the U.S. 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?”
Excerpts from a story by Courtney Mitchell, University Gazette. Read the original version at http://gazette.unc.edu/2012/11/30/professors-bring-autism-expertise-to-bolivia/.
Updates: Autism stakeholders in Bolivia are working to form a national autism advisory committee, following a conference call with the NC Partners and the Autism Speaks coordinator of the Global Autism Public Health Initiative, Michael Rosanoff, in January. Rosario Roman, one of last summer’s autism team members, is returning to Bolivia in June, and will follow up with Bolivian Partners and other autism stakeholders there. In addition, Partners of the Americas is sponsoring a month-long visit to the Triangle area by Elida Hildalgo Marquez, mother of a child with autism and a dynamic parent advocate from La Paz. Ms. Hidalgo will be learning about the various programs for children and adults with autism and their families here in NC. As of last week, officials at both UNC-CH and the Catholic University of Bolivia at Santa Cruz have signed a memorandum of understanding to plan future academic exchanges related to autism.