Dear Conner Gorry,
We are writing in response to your article, “Autism Spectrum Disorder in Cuba: Comprehensive and Coordinated Response,” published online in MEDICC Review’s open access International Journal of Cuban Health and Medicine (April–July 2017). First and foremost, we would like to applaud you for disseminating your analysis on the prevalence of autism in Cuba and how families receive services for their children. The Association for Science in Autism Treatment (ASAT) is an organization that supports and offers families resources on scientifically-based autism practices. Cuba can be difficult to access when it comes to analyzing clinical and educational trends, so it is admirable to see through your analysis that Cuba may be using such practices in their schools and with professionals working with children with ASD. By utilizing applied behavior analysis and specific evidence-based practices within occupational and speech therapies, Cuba appears to be on the right track to assist this population by using the best available treatments.
You start off your article with the personal accounts of three young Cubans who have been diagnosed with autism and who have received services through specialized schools and government-backed funding. Their notable improvements mirror what can often be seen in the U.S when parents are able to take advantage of federally-funded, evidence-based early intervention programs. In future articles, we would be curious to learn more details on how the programs you mentioned are run. For example, how many Board Certified Behavior Analysts (BCBAs) work in a single specialized school or set of schools? Are there any experimental teaching practices occurring in these educational settings that you are aware of? Receiving more in-depth insight into practices from a country that has been relatively cut off from a viewpoint such as yours is vital to increasing access to appropriate services for all, and we applaud you for your efforts.
In addition, it is wonderful to see that the country is using tools that many U.S. pediatricians and professionals employ to help diagnose autism, such as using the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). However, you mention that the country still needs an extensive research project to map the prevalence of autism within its own jurisdiction. This would improve the efforts to collect as much empirical data as possible which may help advance programs and assist professionals in the field. We hope that in the near future, the United States and Cuba will have increased opportunities to join forces and share with each other their knowledge and expertise in autism research, which may also help advance programs and assist professionals in the field. When we collaborate to advance scientific research and critically evaluate outcomes, we can more efficiently expand effective practices for all.
Before closing, we would like to take the opportunity to make a few suggestions for clarification. Regarding specific intervention, you mention, “Although autism has no cure, symptoms and functionality can improve through a combination of psychosocial interventions, speech therapy, behavioral modification, special education, and alternative and complimentary therapies,” and you go on to say that “treatment must be individualized.” While treatment should certainly be individualized and we are grateful that you included Dr. Whilby’s cautionary statement to parents asserting that “improvements aren’t always made,” we would like to add that every individual treatment should be backed by scientific evidence of effectiveness. Hundreds of touted “treatments” exist that are not backed by adequate research, and they can end up causing more harm than good. These include some of the “therapies” mentioned in your article. You can find more information on the evidence behind potential treatments on the Learn More About Specific Treatments page of ASAT’s website. Our website contains information on a variety of topics that you might be interested in sharing with your readers in future articles focused on evidence-based treatment for individuals with autism.
You also mention that applied behavior analysis “is an integrated and individualized treatment protocol designed to modify behavior and increase skillset by using positive reinforcement; a baseline is established for each child measuring their responses to a series of trials— desired behavioral responses are rewarded, negative or incorrect responses are ignored—and their progress tracked as they improve, with positive reinforcement provided to motivate them to keep striving and learning.” While there are aspects of this statement that are true, we would like to clarify that practitioners of applied behavior analysis (ABA) aim to improve socially important behavior by using interventions that are based upon principles of learning theory and that have been evaluated in experiments using reliable and objective measurement. By and large, positive reinforcement is a key aspect of any ABA program, but it is not necessarily the only way to effect behavior change, nor are “negative or incorrect responses” always ignored or “responses to a series of trials” the only way behavior is measured. All ABA interventions should be based on the function of (or reason for) behavior, and are highly individualized.
Thank you for giving the world a glimpse of the essential job that Cuba is doing for its people in need. We hope Cuba will continue to refine their pursuit of evidence-based practices for individuals with autism.
Sincerely,
Elena M. Escalona, MS.Ed. and Renee Wozniak, Ph.D., BCBA-D
Association for Science in Autism Treatment
