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Cuba opens its doors to Autism Speaks

Autism Speaks ambassadors report on their ground-breaking visit with the Cuban Ministry of Public Health in Havana

 

 

 

 

By Autism Speaks Executive Vice President for Strategic Communications Michael Rosen and Director for Public Health Research Michael Rosanoff.

Last Wednesday we travelled to Havana as the guests of the Cuban Ministry of Public Health. We were offered a first look at that nation’s autism services as part of its renowned universal health care system. Our objectives were to learn from one another. We were interested in understanding how Cuba excels at delivering autism services to families in a resource-poor country through its free health and education programs. Although Cuba is considered a low-income country, we heard that 50 percent of the country’s budget is dedicated to health, education and social protection programs.

The Ministerio de Salud Publica (MINSAP), in turn, wanted to learn from the success of Autism Speaks awareness campaigns, its Family Services outreach and its public health research program. Through such collaboration we can learn from each other and look for ways to support all people with autism not only in Cuba, but also in the US and around the globe.

We heard a presentation from Alberto Fernandez Seco, head of the Elderly, Social Assistance and Mental Health Department of the Ministry of Health. Dr. Seco explained that because all health care is free in Cuba, people are seeing the doctor far more regularly than in many countries and the focus is on preventative care from the first days of life, throughout adulthood.

In a country of 11 million people – a population just bigger than that of New York City – there are more than 400,000 doctors. To put that into perspective, in Cuba there is one doctor for every 30 people, while in the US there is one doctor for every 300 people. This difference is what makes Cuba’s universal access to healthcare possible.

The prevalence of autism in Cuba, like much of Latin America and the world, remains unknown. A 2004 government survey based on records of individuals receiving autism services found a three-fold increase in the number of autism cases since just three years prior. However, the estimate was that only 1 in 2,500 Cuban children had an autism spectrum disorder. Cuban experts agreed that this number was an underestimate. Cases were missed using flawed methods.

As a result, MINSAP requested Autism Speaks guidance in conducting a new study that would provide a more accurate and reliable estimate and, in turn, allow the government to better plan the delivery of autism services.

Although 1 in 2,500 is much lower than the global best-estimate of autism prevalence of 1 in 100, representatives from MINSAP firmly believe that the prevalence of autism is lower in Cuba than we see elsewhere. They consider their universal well-child care program – which allows children to be seen by a community doctor nearly 20 times in the first year of life –as a built in system of early autism detection and intervention.

Is this system possibly reducing the number of cases of autism, or at least improving symptoms in the youngest of children who may otherwise be diagnosed with autism later in life? This is among the many interesting questions we hope to further explore with our Cuban colleagues.

On our visit, it was wonderful to see the heartfelt interest in collaboration and the interest in our work at Autism Speaks. Pediatrician Mabel Whilby Santiesteban, a key leader in supports of autism families and a member of the national group on psychiatry, was well aware of our 100 Day Tool Kit (en español aqui) and had already been sharing it with families. She was excited to learn that soon all of Autism Speaks Family Service Tool Kits would be available in Spanish. (See “Autism Speaks partners with Carlos Slim Foundation to offer Spanish-language tool kits.”)

She also told us about Cuban celebrations surrounding World Autism Awareness Day and that she and many of her colleagues dress in blue on April 2nd to honor those with autism.

We promised to work together to raise even more awareness in 2016.

In the end, it was plain to see that no matter where you travel, the faces, the struggles and the victories of our families with autism remain the same. As a grandmother sat next to her 7-year-old grandson, he worked to match the small toy cow she was holding with the picture of the cow on the table. (See video clip above.) The struggle and victory in that task, however small it may seem, will lead to many more as this young man grows up – just as they do for our children here, from New York to Ohio to California.

And every lesson we learn along the way can benefit our families, friends and neighbors here and around the world.

 

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.