| Authors’ Note: We have secured permission to reprint this chapter on international dissemination. Please note that it was written a few years ago and does not reflect our newest efforts and accomplishments with respect to ASAT’s outreach across the globe. The original citation is as follows:
Celiberti, D., Sivaraman, M., & Slim, L. (2022). Standing for science takes a village – an international one. In J. A. Sadavoy & M. L. Zube (Eds.), A scientific framework for compassion and social justice: Lessons in Applied Behavior Analysis (pp. 128-132). Routledge. https://doi.org/10.4324/9781003132011 |
David Celiberti, PhD, BDBA-D, Maithri Sivaraman, MSc, BCBA , and Lina Slim, PhD, BCBA-D, CCC-SLP
Association for Science in Autism Treatment
Outside the United States, many children with autism reside in countries where access to the very best that science has to offer is limited. There are several barriers that these children and their families face such as misinformation, lack of resources and providers in the community, fewer laws and standards mandating quality, and some sociocultural norms that may be restrictive or exclusionary in nature. We would like to highlight some of the efforts that the Association for Science in Autism Treatment carried out to promote the global dissemination of science-based autism treatment. We believe these efforts may better position communities to consider and incorporate science-based treatment, and to be less susceptible to the dangerous byproducts of pseudoscience (e.g., potential harm, poor outcomes, depletion of precious resources, distrust in the professional community). Science matters – no matter where you live.
When the first author was a Rutgers University graduate student in the late 1980s and worked at the Douglass Developmental Disabilities Center, he was immediately struck that only a tiny percentage of students with autism spectrum disorder (ASD) were receiving the lion’s share of the expertise and resources. This disparity was particularly troubling after realizing that scores of other children with ASD, in fact, the vast majority, were receiving “generic” special education services which did not yet incorporate state-of-the-art, science-based intervention. He also learned that outdated and unsupported models of treatment (e.g., psychoanalytic play therapy) were still popular in certain areas of the United States. Over time, conditions improved in the United States with more and more children with autism able to access interventions that, to varying degrees, were science-based (with the notable exception of rural communities). Furthermore, here in the United States, there has been an exponential increase in the number of credentialed behavior analysts.
Sadly, this evolution has not been the case internationally. Outside the United States, many children with autism reside in countries where human resources to carry out the very best that science has to offer are scarce. Systems and laws to support quality intervention may be lacking, and the cultural, societal, and religious practices of these countries may pose unique challenges. It is beyond the scope of this short chapter to detail these challenges in a manner that does them justice; however, we would like to highlight some of our efforts to promote the global dissemination of science-based autism treatment. We believe these efforts may better position communities to consider and incorporate science-based treatment, and to be less susceptible to the dangerous byproducts of pseudoscience (e.g., potential harm, poor outcomes, depletion of precious resources, and distrust in the professional community).
There are many barriers to the dissemination and adoption of evidence-based practice that we highlight below. Simply being aware of these barriers does not necessarily mean that one is able to address them directly or even has the resources to do so; however, the first step is recognizing where the challenges lie. When you embrace the notion that it “takes a village,” it compels you to embody the role of change agent while respecting the reality that efforts of others are needed for synergy to take place. It is in that spirit that we wanted to provide information about our work through the Association for Science in Autism Treatment (ASAT).
Photographed by Monstera (pexels.com)
Since its creation in 1998, ASAT has been committed to the promotion of evidence-based practices for individuals with autism. Sadly, a simple Google search for “autism treatments” yields almost 50 million results. Some showcase evidence-based interventions while the vast majority do not. Whereas the sheer number of treatments available can be both daunting and frustrating for consumers and providers, it has become our mission to offer a clearer path toward effective treatment. It would be unfortunate if our efforts only aided families in the United States; therefore, ASAT’s goal is to ensure that consumers across the globe, both savvy and inexperienced, are familiar with appropriate, effective, and evidence-based treatments.
How does one attempt to promote evidence-based practices (EBPs) in other parts of the world? Disseminating science-based treatments in international communities is tantamount to sailing uncharted waters with no sextant. We believe that recognizing barriers to effective treatment and making successful inroads must occur on many levels (e.g., at the level of family, community, and the political system).
Some family-level considerations in international dissemination could involve linguistic and cultural factors. To illustrate, a family in France may view 40 hours per week of Early Intensive Behavioral Intervention (EIBI) delivered to a 4-year-old child as torturous because all intervention is perceived as “work.” A family in India may find that having a child learn to write letters and numbers, and to participate in a general education classroom might seem more important than being toilet trained or independently putting on a shirt. A family who abides by Muslim religious values and norms may prioritize goals that will help the child participate in religious prayer practices over academic tasks.
A culturally competent behavior analyst must recognize, respect, and address these considerations (Dennison et al., 2019) through education, training, supervision, consultation, and collaboration, and yes, even trial-and-error learning. However, cultural responsiveness alone may not even be enough; having cultural humility may enhance understanding of how each family accesses and receives information within their communities. For example, a family in India receiving services from a board-certified behavior analyst (BCBA) based in the U.S. may benefit from learning both (a) how to access reliable information, and (b) how to approach autism treatment by seeking models of other families within or outside their communities, who were faced with similar challenges and succeeded at making strides in their child’s progress.
If we take a step back from the level of the family, we start to observe barriers at the community level. Perhaps most palpable is the deluge of misinformation within the community: media representations are fraught with click baits and articles exalting harmful treatments. “Stem cell therapy breathes life into 12-year autistic girl” and “adjunctive (circus arts) therapies providing positive results for autism” are just two recent examples from India and Australia, representing an abundance of pseudoscience (The Hans Times, 2016; Singh, 2016). Similarly, at the provider level in many countries, providers often lack education and training in evidence-based practices even when they recognize that science-based interventions are more impactful than generic, pseudoscientific, or otherwise poor-quality interventions. This is coupled with a dearth of credentialed behavior analysts. Although the United States and Canada account for only 4.7% of the world’s population, more than 95% of BCBAs live in these countries (BACB, 2020). On the other hand, Lagos, Nigeria has a population of 21 million people. Based on the most recent global ASD estimate of 1%) (Maenner, 2020), this translates to 210,000 individuals with autism: yet the BACB’s certificant registry lists only 2 behavior analysts in all of Nigeria at this time.
Several system-level barriers also exist. Through ASAT’s interviews with professionals around the world, we have learned that there is often no recognition for behavior analytic providers in most parts of the world. As a specific example, BCBAs cannot practice in Belgium and Italy unless they are also certified as a clinical psychologist. There are no applied behavior analysis (ABA) training programs in many parts of Asia and Africa. Additionally, there is no insurance coverage for ABA services, and the short supply of trained ABA professionals results in prohibitively high treatment costs for families. Parent advocates have worked tirelessly in Canada to have autism included in Medicare coverage, but sadly, lost at the Supreme Court of Canada. Unfortunately, the supply demand disconnect brings many unique challenges. These include, but are not limited to, providers charging exorbitant fees, having excessive caseloads, and working outside of their areas of expertise; all of which create a situation in which low-resource families are unable to access services.
We recognize that a dearth of qualified professionals can be directly addressed by an increased number of trained and credentialed behavior analysts (BCBAs or their equivalent) and the establishment of local training programs. However, building awareness about evidence-based practices within a community is a crucial step as well. One critical aspect for raising awareness is that a need or motivation exists within the community. For example, a Chinese American subscriber contacted the first author for permission to translate ASAT’s article on “Recurrence of Autism in Families” into Mandarin because she felt the need for this information in her homeland. Similar connections have prompted other translation efforts carried out by ASAT. A second critical aspect to making inroads within a community has involved including members from the community itself. Community members often have invaluable experience and knowledge about the grassroots-level issues. For example, ASAT Extern Amanda Bueno, based in Brazil, has been instrumental in disseminating science-based treatment options and dispelling the myths that are prevalent in her community. Amanda translated our treatment summary about bleach therapy as this was a method garnering popularity in her native country of Brazil. Many of these efforts have been possible through ASAT’s volunteering and externship program (detailed below) that is open to anyone across the world interested in promoting science-based treatment.
In the next section, we focus specifically on ASAT’s efforts most relevant to international dissemination. Our efforts are broadly consistent with evidence-based practices recommended for global dissemination (e.g., Healey et al., 2017). These include partnering with members in the community, conducting a needs assessment with stakeholders in the community, and making changes to the service delivery process by adapting the language and content as required.
Several decades of scientific support indicate that applied behavior analysis lays the groundwork for an effective treatment for people with autism. ASAT has supported the work of behavior analysts outside the United States in myriad ways: 1) to serve as a resource and 2) to help and guide the families they serve to be less susceptible to the dangerous influences of pseudoscience.
The published articles in Science in Autism Treatment, our monthly publication, continually address the full range of the autism spectrum and stress the importance of asking questions to assess provider competency, adequate experience, credential verification, and goodness of fit. We currently have almost 13,000 subscribers from over 100 countries. We explain treatment concepts using nontechnical language, which is particularly important as English may not be the primary language of many of our readers. With respect to content, we are mindful of our global audience. In addition to showcasing diverse applications of ABA in our Clinical Corner column, we have recently focused on topics such as bilingualism and telehealth that are particularly relevant within the global community.
ASAT has interviewed international experts to identify strategies that were successful, and strategies that encountered barriers, in their respective countries. We interview prominent behavior analysts from across the globe around common themes of service delivery, dissemination, and access to behavior analytic treatment. Some recent interviews have included Mickey Keenan, Eitan Elder, Paul McDonnell, Pooja Panesar, and Francesca Degli Espinosa. We have also shared parental perspectives of parent advocates outside the United States such as Nicole Rogerson, Jane McCready, Andrew Kavchak, and Beverly Sharpe. These interviewees share their trials and tribulations as they generously discuss their journeys. In fact, the 2nd author’s recent interview with Dr. Degli Espinosa is a perfect example of how we strive to share the expertise of individuals outside the United States (this interview highlighted innovative ways in which some BCBAs in Italy adapted home-based services in the face of the COVID-19 pandemic). Overarching, recurring themes addressed by our interviewees include empowering families with information, consulting with families and their community to enhance cultural sensitivity, and awareness of the contextual environment to ascertain effective treatment selection, collaboration with allied professionals and stakeholders (i.e., community resource groups, government support), building advocacy groups and partnering with parents, and above all, being persistent in their efforts. Our interviews have also addressed the barriers to credentialing in other parts of the world and supporting a multilingual community to providers and families.
Through our Media Watch letters, we respond to accurate and inaccurate representations of autism treatment, including, but not limited to applied behavior analysis (ABA). Many of our letters address ABA outside of the United States, including countries like India, Australia, China, South Africa, Israel, UAE, and Canada. We remain committed to not just address ABA as it is applied in other countries but to combat the pseudoscience that separates individuals with autism from the very best that science has to offer. It is important to note that accurate portrayals are encouraged, and inaccuracies in representations are directly challenged while offering alternative, accurate information.
Our 150-hour externship program is one of many volunteer opportunities that offer valuable experiences for beginning and seasoned professionals alike. ASAT has long included volunteers from around the world. We have had several externs from outside the U.S. including Canada, Australia, Ireland, Brazil, India, and UAE join our efforts. Each Extern has the opportunity to work on three individualized goals over the course of their experience and to gain experience in sharing information about science-based treatment. Many of these goals are tied to international dissemination and embrace the very title of this short chapter.
In an attempt to address linguistic barriers, we are promoting the field of ABA worldwide by making our website content available in over 80 languages. This feature is prominently displayed at the top of the homepage of our website (www.asatonline.org.). We have created and translated one-page flyers showcasing our newsletter and website offerings in over 12 languages and uploaded these to our website so they can be printed and shared. We regularly provide articles and resources that can be shared by providers of behavior analytic services, some of which have been translated into other languages. Again, this is achieved through active collaboration with individuals from around the world wanting to partner with us.
Finally, we maintain active social media pages (Facebook, Instagram, and Twitter) to help parents, other family members, and providers outside of North America better understand the scope of evidence-based practice regardless of their country of origin, and to join a global community that shares those values.
Although much of this article has described ASAT’s efforts, we recognize this is not just a unilateral transmission of information. There is so much to learn about, with, and from one another with respect to international dissemination (e.g., research published in other languages likely contains valuable information that can enhance our work). We are open and willing to listen to all members from around the world with their own perspectives and needs and will offer support to the extent we have the resources to do so. For instance, although our Media Watch initiative will continue to address and respond to media representations of autism and its treatment across the globe, it is important for everyone to monitor representations in the media; we hope you consider ASAT as a model for that.
As we embrace the reality that we are part of a shared global community, we recognize our responsibility to establish strong international ties that build robust support systems and promote learning and growth for all involved. Acknowledging that a one-size-fits-all approach is not applicable, we will continue working together in a dynamic and ongoing manner to promote the adoption of culturally sensitive, science-based practices that celebrate the diversity each person brings while advancing the notion that science matters – no matter where you live!
Original Citation:
Celiberti, D., Sivaraman, M., & Slim, L. (2022). Standing for science takes a village – an international one. In J. A. Sadavoy & M. L. Zube (Eds.), A scientific framework for compassion and social justice: Lessons in Applied Behavior Analysis (pp. 128-132). Routledge. https://doi.org/10.4324/9781003132011
References
Behavior Analysis Certification Board. (2020). Certificant data. BACB. https://www.bacb.com/bacb-certificant-data.
Dennison, A., Lund, E. M., Brodhead, M. T., Mejia, L., Armenta, A., & Leal, J. (2019). Delivering home-supported applied behavior analysis therapies to culturally and linguistically diverse families. Behavior Analysis in Practice, 12(4), 887–898. https://doi.org/10.1007/s40617-019-00374-1
The Hans India. (2016, June 9). Stem cell therapy breathes life into 12 year old autistic girl. Andhra Pradesh Breaking News, Telangana News, Hyderabad News Updates, Coronavirus Updates, Breaking News. https://www.thehansindia.com/posts/index/Hans/2016-06-08/Stem-cell-therapy-breathes-life-into-12-year-old-autistic-girl/233700#:~:text=The%20family%20of%20the%20city,brought%20about%20to%20the%20child
Healey, P., Stager, M. L., Woodmass, K., Dettlaff, A. J., Vergara, A., Janke, R., & Wells, S. J. (2017). Cultural adaptations to augment health and mental health services: A systematic review. BMC Health Services Research, 17(1), 8. https://doi.org/10.1186/s12913-016-1953-x
Maenner, M. J., Shaw, K. A., Baio, J., Washington, A., Patrick, M., DiRienzo, M., Christensen, D. L., Wiggins, L. D., Pettygrove, S., Andrews, J. A., Lopez, M., Hudson, A., Baroud, T., Schwenk, Y., White, T., Rosenberg, C. R., Lee, L.-C., Harrington, R. A., Huston, M … & Dietz, P. (2020). Prevalence of autism spectrum disorder among children aged 8 years—Autism and Developmental Disabilities Monitoring Network, 11 sites, United States. Surveillance Summaries, 69(4), 1–12. http://dx.doi.org/10.15585/mmwr.ss6904a1
Singh, L. (2016, February 4). Adjunctive therapies providing positive results for autism and other conditions. The Sydney Morning Herald. https://www.smh.com.au/healthcare/adjunctive-therapies-providing-positive-results-for-autism-and-other-conditions-20160203-gmkjls.html
