We would ask families this question, and they would get really uncomfortable. And they would say, “No, my child would never stick out their tongue. I would never teach them that.” Because that particular gesture is viewed as completely inappropriate in some cultures. So if you translate that directly, parents interpret it as asking about polite behaviors rather than imitation skills.
Q. How do you go about moving from standard translation to cultural adaptation?
A. The short answer is that you spend more time and more money. But one of the things that you want to do is go to people that are in your target population and ask them: How are they understanding the questions? How are they interpreting them? Having multiple translators is also helpful, multiple people who are from different areas, who speak different dialects, who have different perspectives.
Also, testing an instrument after the translation is important. How accurate is it? Does it actually work? Those kinds of things are not usually redone after translation.
Q. When you are working directly with families to deliver therapy or interventions, what does cultural adaptation look like?
A. One of the types of therapies that I work with a lot is parent-mediated therapy. What that means is you teach parents to use strategies to do at home with their kids themselves.
Basically, all of the opinions that we have around child rearing come from cultural perspectives. How children should behave, how parenting works. Things like when children should learn specific behaviors and what is expected of them.
In the United States, for example, we are very focused on learning skills of independence and autonomy. So when working on using language to communicate, something that we might prioritize for a child would be requesting preferred food items. Whereas somebody from another culture might say, “But I’m always going to choose what they eat, so why would they ask for a specific food?”
Cultural adaptation is about understanding these differences and adapting to find strategies that work within a family’s culture. There’s always a different option, or ways you can adapt an activity or strategy to a different context. Maybe instead of food, you teach the child to request a preferred toy.
Q. What are some of the consequences of not considering cultural adaptation in these situations?
A. We don’t have good quantitative data on this yet, but there is some qualitative data – interviews with families asking about their experiences.
You find families who say, “I’m not going to try it. I’m not going to implement these strategies.” Or you’ll have people that come to therapy less. They don’t feel comfortable. They don’t feel like they’re getting enough out of it, so they come less frequently or they don’t come at all.
And that’s a problem if we’re driving people away from therapy services that we think are imperative for their development.
Q. You’re piloting a virtual professional development program for autism service providers in Bolivia. What are you and your team hoping to accomplish?
A. Currently, autism care in Bolivia is very limited. It’s a fairly rural country, low-income, with very few degree programs for pre-professionals and very low funding for services.
For this project, we are training professionals who can give autism diagnoses in Bolivia, so we have psychologists and neurologists, neurodevelopmental pediatricians, and a few speech-language pathologists and medical doctors, some in very remote areas of the country.
What we want to figure out is: If you do a virtual professional development program like this, will you see an improvement in things like their understanding of autism, how to do an autism evaluation, the diagnostic criteria for autism?
