Leveraging telehealth to provide global autism support

In the United States and in Canada, we often hear how access to autism services can be challenging for families. There are long waitlists, therapies can be expensive, and it is sometimes necessary to travel long hours to get support.

But what about families who live in countries where autism support services don’t exist? We caught up with Loukia Tsami, the coordinator of the Telehealth ABA World Project, whose passion is in bringing critical services to families around the world. Here is what she shared with us.

Tell us a little bit about yourself and your research at UHCL.

Every single day I look forward to go to my office at the Center for Autism and Developmental Disabilities at UHCL. I am very lucky to work in an incredible environment and have my favorite scientist in the word as a supervisor! Since 2015, we have been conducting research via telehealth. We are providing parent training services to families with children with autism who engage in high rates of behaviors like self-injury, aggression, property destruction, etc. Through a government grant, we provide services online to families in the state of Texas. The purpose of this project is to evaluate the effectiveness of behavioral treatment based on different assessment methodologies.

What makes you most excited about your research?

I am fascinated with the international projects with families from countries around the world. Parallel to the work with do in the US, we have been serving families around the globe including Mexico, Costa Rica, Greece, Turkey, Ukraine, Russia, Pakistan, Nepal, China, Saudi Arabia, Morocco, Liberia, Ghana, Cameroon, Nigeria. We are replicating the effectiveness of the behavioral treatment used with the US families, and also evaluating how acceptable is the assessment and treatment to caregivers from various cultures.

We are also interested to see how the families feel about using their computer to receive services online. Last, we are analyzing software, hardware and connectivity data. Our global work is important because most of the families we serve don’t have other options. We are the only professionals who can help them address behaviors like aggression or self-injury. It’s a wonderful feeling to be able to improve people’s quality of life! That’s what we do!

You rely on local interpreters to help translate and deliver your programs around the globe – can you please share with us why it is important to rely on local interpreters?

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Maryam Maifada holds a flyer for a presentation in Nigeria by Loukia Tsami. (from the Telehealth ABA Facebook page)

We can’t function without interpreters, 97% of the international families we serve don’t speak English. We are lucky to have interpreters who grew up in the countries the families are located and are aware of the culture, values, and beliefs.

The interpreters depending on their availability may be in three different locations. Sometimes, they are located next to the therapist at the university clinic. Sometimes they are located with the family. And sometimes they are in a separate 3rd location, often at their house. With some families, we have had three-way-calls interpreter-therapist-family located in three different continents, Asia-Africa-America. Telehealth facilitates such cool interactions! Last, I would like to mention that all the interpreters are volunteers!. We are grateful for their valuable service!

Can you please share your thoughts on the importance of parent engagement in therapy – why is it so important for parents to collect data on behalf of therapists? Do you have any tools that you share with parents to help them with daily data collection?

Parent training is exactly what we do! We coach caregivers to conduct assessment and treatment most times in their home environment. Most parents are extremely motivated and efficient as they want to see their children thrive.

The parents we work with learn fast and implement both the assessment and treatment with high fidelity. Based on the data collected during the weekly meeting, we evaluate the effectiveness of our intervention and make changes to our treatment plan, if needed. With most families we don’t train the parents to collect data due to time limitations as we only have one hour per week.

Your research has a massive impact for people who have difficulty accessing services – can you please share some insights about the challenges of providing global autism support?

Unfortunately, we are only able to make a small dent in the inequities of global healthcare. The infrastructure differences, for example, between Canada and Liberia cannot be overcome by our willingness to use technology for the provision of services throughout the world. However, we seem to be successful in finding creative ways to offer services in locations that otherwise go without access.

 

Loukia TsamiAbout Loukia Tsami:

Loukia Tsami, MA, BCBA, LBA is from the Center for Autism and Developmental Disabilities at the University of Houston, Clear Lake.