Q&A: Offering Autism Services to Non-English Speakers Requires More Than Translation

When it comes to providing autism services to non-English-speaking families, Michaela DuBay says it’s important to look beyond language barriers to a family’s culture.

In the U.S., an estimated 60 million people speak a language other than English in their homes. Often, that also means cultural differences that may not be readily apparent.

“In the speech-language pathology profession, only about 8% of our workforce speaks a language other than English,” said DuBay, a speech-language pathologist and an assistant professor at the University of Virginia’s School of Education and Human Development. “I am really interested in finding ways to bridge those gaps.”

Here, DuBay talks about how cultural barriers impact autism services in the U.S. and internationally and what can be done to improve access to care for non-English speakers who are on the spectrum.

Q. What first piqued your interest in studying language and culture barriers in your field?

A. When I started working as a speech-language pathologist, I was in a public school in an area with a lot of immigrants and Spanish-speaking families. I happened to speak Spanish because I studied it in school, so when we had a family that spoke Spanish, I worked with them.

After a while, I noticed a pattern: I was speaking their language – there wasn’t a communication breakdown of any kind – but some families would come back the next week, and it was like they had not completely grasped what I was trying to convey to them.

For example, one strategy we often use is to teach kids to use a gesture or sign language for things they aren’t yet able to say out loud. I had taught a parent to use that strategy and it seemed to be going well. The child was making a lot of progress learning to speak.

But later on, I found out the parent admitted, “At first, I was very hesitant, because signs are for deaf kids. And I didn’t understand why I would use signs with my child who wasn’t deaf.”

That was sort of a wake-up call for me. I realized it wasn’t a language gap; it was more of a cultural gap.

Q. Can you explain the difference between translation and cultural adaptation?

A. A standard translation is just a linguistic adaptation. You’re just trying to take the words and put them into a new code, if you will. But when you’re talking about switching languages, the vast majority of the time, you’re talking about switching cultures as well. And the way that you understand concepts from one culture to another can be completely different.

I was translating an autism assessment questionnaire that included the question, “When you clap your hands, shake your head, or stick out your tongue, does your child imitate you?”

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?

The response has been incredible. We had so much interest that we had to turn people away. Because of this interest, we’re looking at plans for the future. We’re interested in culturally adapting and translating an autism screening tool that would be valid and accurate in Bolivia. Then even further down the line, I’d like to do intervention studies there.

Q. What advice would you give to teachers, therapists, or other clinicians working with families from different cultures?

A. Assume nothing. Early in my career, I made the mistake of making a lot of assumptions about what a family’s home life looks like or what their reactions to certain interventions would be. It’s a good idea to ask families follow-up questions that will reveal more about how they understand what you’re asking of them. Will it work in their home life? Is this an appropriate strategy for them to use with their child?

Don’t assume, ask a lot of questions and listen.