What are the benefits of telehealth and Discrete Video Modeling (DVM) for families with autistic children across the globe?
In the United States (US), an estimated 222 per 10,000 children received a diagnosis of autism spectrum disorder (ASD) in 2020—one of the world’s highest rates. Only South Korea (263) and Hong Kong (372) reported greater ratios. For comparison, Germany (38), China (23), Taiwan (5), and Poland (3) recorded dramatically fewer. We do not know whether these differences are related to environmental factors, genetic differences, or less aggressive testing, monitoring, and awareness.
While these rates are surprising, clinicians in the US bring cutting-edge clinical expertise, therapeutic models, and treatment technology to families with loved ones with ASD. Increasing sophistication in telehealth practices now allows the US to offer clinical services to families around the globe.
Telehealth goes mainstream
After COVID-19, telehealth gained mainstream acceptance in the medical world and as a distance learning tool. Discrete Video Modeling (DVM) for people with ASD, Down’s syndrome, and other developmental differences teaches crucial speech, language, reading, social, and life skills by breaking down each skillset into “digestible bites”.
Using a DVM tool, children view video assignments specifically tailored to their language and communication goals. Kids closely watch video clips focused on one component of the model: the mouth. The video provides a model of both what the mouth is supposed to look like and what the spoken word should sound like, functioning as a virtual tutor/video flashcard to help them verbalize the word.
As a behavior analyst at Gemiini Systems, I work with clients I have never physically met, some of whom are overseas. Working remotely, I find I gather data more efficiently using an electronic data system on my computer during telehealth. In addition, many clients respond more quickly as they have access to an unlimited repetition of concepts through DVM.
Our focus as clinicians via telehealth is to coach caretakers to help the client use the skills learned through DVM assignments. Although research is needed in the area of ABA services and telehealth, with the recent change to telehealth-only services, we have seen accelerated growth in skills through telehealth supports while serving up to 10 clients back-to-back throughout the day.
Parents begin learning Applied Behavior Analysis (ABA) therapy techniques through their participation, which leads to increased advocacy for their children as skills develop—even if they live in countries and regions where these therapies are not available or where the population is less literate. The repetitive trials with video models, coupled with positive reinforcement by the parent, expose the parents to ABA’s core tenets.
As parents participate in their child’s ABA therapy, they become an integral part of that therapy and a more important part of their child’s life. While there are challenges delivering services to families through telehealth, parents taught to work with their children in a way that matches effective teaching practices (e.g., praising children for responding correctly, delivering effective feedback) will promote more success in their child’s ABA therapy.
Some parents may be intimidated to teach their children, but they should be encouraged by studies showing that parents from diverse educational backgrounds (high school through graduate degrees) can be taught these skills.
Challenges for developing countries
Working in developing countries entails a different set of challenges than working with clients in industrialized nations. While nearly two-thirds of the world now have access to the internet, these people are mainly located in countries with more advanced economies. Only one-third of the citizens in developing nations are online. Access to text messaging via mobile devices is more common, with more than five billion people using text. From our experience, clients successfully collaborate using secure texting programs developed for the medical field.
According to UNESCO, there are nearly 793 million illiterate adults globally. An unknown but sizable number of these people have exceptionalities and are underserved. We are the professionals that have the training to help these families.
How can we accomplish that? Can ABA services be delivered remotely? Parents who are new to telehealth often question whether their child can receive an accurate evaluation of his/her behavior and communication online.
Recent studies show that behavior assessments via telehealth show promising results but still need more research. According to the most recent issue of the Journal of Applied Behavior Analysis:
“The COVID‐19 pandemic drastically changed the way healthcare is delivered and may have enduring impacts on healthcare service delivery. Although additional research is needed, behavior analysts leveraged technology and their knowledge…to deliver medically necessary care to clients during this crisis. This study offers initial evidence of the promising effects of direct treatment via telehealth practice in ABA treatment.”
Some parents might ask whether telehealth is as effective as in-home delivery of ABA therapy. While the research is limited, researchers have found that there is little to no difference in outcomes when telehealth is used. Studies have demonstrated that parents were able to learn how to assess problem behavior and teach their children appropriate behavior through telehealth with similar results to more in-home delivery. In addition, the costs for telehealth were substantially less than in-home therapy.
This is good news for ABA therapy delivery to nations with limited resources and access to ABA professionals. This means that children and families can provide much-needed therapy to increase the necessary skills for children in their homes, with little time and resource allocation for travel for families in rural areas.
Nigeria
The late diagnosis and limited interventions available for autism spectrum disorder among Nigerian children often coincide with a period of peak vulnerability to infectious diseases with neurological consequences.
The diagnostic challenges, coupled with socio-cultural factors, complicate getting children the support they need. Telehealth analysis offers hope for countries like Nigeria where autism spectrum disorder is underserved or not even understood.
Syria
Syria has been engaged in civil war since 2011. It is estimated that at least 10,000 children with disabilities are without educational services. Among those who have access to services, there are few services for children with autism. The provision of telehealth can reduce the strain on families to access services for their children and provide much-needed learning in war-stricken areas.
India
Indian families have long relied on relatives and friends to support children with autism. India is beginning to address the special needs of over 31 million developmentally disabled people and about four million individuals with autism in its large population.
Advocacy groups want more resources and action. Several early intervention centers and special schools are emerging in cities, but few people have access, and even fewer can afford the services.
Mexico
In Mexico, misdiagnosis or late diagnosis of autism has become a major medical problem. Fortunately, the use of standard tools to diagnose and treat autism in Mexico has been growing.
Kuwait
Kuwait has come a long way in awareness and support for children with autism. In 1985, Dr. Samira Al-Saad, a mother of a child with autism, was unable to enroll her child in school due to the lack of awareness about autism in Kuwait.
She moved to the US, where she earned a Master’s and a Ph.D. degree in autism. She eventually returned to Kuwait and began teaching in her home but could not convince the authorities to start a school for students with autism. After the Gulf War, she established the Kuwait Centre for Autism in 1994, the first center in the Middle East.
“I think I successfully broke the wall of fear,” Dr. Al-Saad said in an interview with Those Who Inspire. “People are used to thinking that the government should do what they want done… But if that doesn’t happen, you have to do it yourself.”
Loukia Tsami’s passion to serve
Dr. Al-Saad’s “do it” attitude is shared by Loukia Tsami, who resides in Texas. She provides telehealth services to families of children with autism via a local grant-funded program. During the evenings and weekends, Loukia volunteers her time to bring critical services to families worldwide.
“This work is my passion; it’s my obsession,” said Loukia. Loukia is a native-born Greek and board-certified behavior analyst. “Some people have nothing. They feel totally on their own. But if they have access to the internet and a computer or smartphone with a camera, I can help.”
This awareness drives Loukia—that many countries have only one or perhaps not a single board-certified behavior analyst in the entire region. “We began in Turkey and Greece and moved to Russia, Ukraine, Saudi Arabia, Pakistan, Mexico, Costa Rica, China, Ghana, Liberia, Cameroon—and I had to find interpreters,” she said.
Sharing our knowledge with the world
As contributors writing this article from the United States, we believe those of us in the US can be grateful for the level of autism insight and therapeutic modalities available, resulting from many decades of work and sacrifice. Fortunately, with our use of telehealth, discrete video modeling, and other digital tools, we can share our knowledge with the world.
References:
https://worldpopulationreview.com/country-rankings/autism-rates-by-country
https://www.healthaffairs.org/do/10.1377/hblog20200715.454789/full/
https://www.weforum.org/agenda/2020/04/coronavirus-education-global-covid19-online-digital-learning/
Pollard, J.S., LeBlanc, L.A., Griffin, C.A. and Baker, J.M. (2021), The effects of transition to technician‐delivered telehealth. Jnl of Applied Behav Analysis, 54: 87-102. https://doi.org/10.1002/jaba.803
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6815667/
https://www.autismaroundtheglobe.org/countries/India.asp
https://link.springer.com/referenceworkentry/10.1007%2F978-1-4614-4788-7_162
https://link.springer.com/referenceworkentry/10.1007%2F978-1-4614-6435-8_102017-3
https://blog.uhcl.edu/news/uhcl-behavior-analyst-uses-telehealth-for-global-autism-outreach
https://www.ohchr.org/Documents/Issues/Disability/StudyEducation/States/Syria.pdf
This article was featured in Issue 124 – Autism Around The World
