Autism awareness across continents
Professor helps diagnose and work with children with autism in Tanzania.
The room is sparse but cozy, with pastel green walls and afternoon sun coming in the window. Toys and books are scattered across a black mat—cars and trucks, plastic figurines and stacking toys made from wood and bamboo.
It’s a common scene in clinics across the U.S., but in Tanzania it’s a more recent and growing trend thanks to the work of Ashley Johnson Harrison, an assistant professor in the University of Georgia College of Education’s department of educational psychology.
For the past three years, Harrison has traveled to Tanzania to conduct autism evaluations. From small beginnings in the town of Moshi, the project has blossomed into a broader effort to reach underserved communities in Tanzania while also working with other Tanzanian organizations to spread autism awareness and teaching methods.
“I wanted to bridge my work with my love of travel,” said Johnson on why she began working overseas. “My original work with autism in Tanzania was primarily clinical in nature, like diagnoses and parent trainings, etc., but I wanted to add a cross-cultural research piece.”
The effort began several years ago, when Harrison met someone doing special education work in Tanzania, where resources for children with disabilities are limited. Through that contact she learned about ACT—Autism Connects Tanzania—and realized there was a need for diagnostic evaluation services. This was a unique opportunity, because it’s a challenge to find organizations willing to host foreign clinicians.
But diagnosing autism isn’t a process that can be easily transferred from one culture to another. Typically, children are presented with toys or different social situations, and are evaluated based on their reactions and behaviors. But what’s a traditional evaluation in the U.S. won’t necessarily work with a child from rural Africa without substantial adaptations and translations.
For example, an evaluation might include an assessment to examine the amount of eye contact a child makes with an adult. But in some cultures, eye contact with adults may not be common or acceptable. As another example, an examiner might use a birthday party to examine social interactions. A child in the U.S. will typically understand cake, candles and balloons. But a child from rural Tanzania may not experience a similar birthday scenario, so the situation needs to be adapted to fit the culture.
This became Harrison’s mission: To use existing tools to create a diagnostic battery that could be used to assess autism in Tanzania; ongoing efforts to translate and adapt autism diagnostic instruments for different cultures occurs slowly. “Our goal was to pick out the pieces that would be universal,” she said. “So, for example, instead of an airplane, pick a truck.”
Language was also an issue.
“I don’t speak Swahili, so that’s a barrier,” she said. “We tried to make (the diagnosis process) more about behavioral interactions that would be cross-culturally appropriate and to minimize the use of language.”
After her first year, Harrison created worksheets, in both English and Swahili, for parents to help them learn different behavioral strategies. This was a breakthrough for the parents, who until that point had no guidance to teach their children even basic skills.
“Your first line of defense is parent training,” she said. The worksheets, translated by local occupational therapists, give basic instructions and show pictures of basic skills like brushing your teeth or using the bathroom. “We emphasize modeling the skills for parents along with verbal instruction and handouts. Also we focus on skills relevant for each family—increasing nonverbal communication for some and expanding spoken language for others.”
In recent years she has expanded her outreach from Moshi to Dar es Salaam. Her library of worksheets has grown as well, and they are now given to parents as part of a larger resources packet. She has also started working with teachers on behavioral interventions and techniques.
Harrison continues to push and expand her outreach efforts, and this summer fellow professor Scott Ardoin will be helping in Tanzania. Her most recent venture is setting up training for teachers as the next line of advocates and awareness in detecting autism.
“This year we have about 20 teachers who have come to multiple previous workshops who will be coming to receive more intensive training,” she said. “We’re trying to train them as local experts and to also get their viewpoint on what would be the next step.”
Harrison’s goal is to be able to bring UGA students with her; her current research is on the knowledge about autism in Tanzania, which will help gauge the amount of services needed in the future.
“I think all the time about ways we can include more people passionate about autism and have a bigger presence,” she said. Similar work is being done in pockets around the world, but it’s not a fully unified effort. “Stigmas are a real problem globally, so in Tanzania we’re trying to decrease some of these stigmas with accurate awareness.”
—Kristen Morales, College of Education