14ymedio, Miguel García, Holguín, 27 June 2024 — During Pedrín’s most recent visit to the dentist, three people were needed to hold him down, in addition to the stomatologist. With an autism spectrum disorder (ASD), any medical treatment that the 15-year-old teenager, who lives in the city of Holguín, needs becomes an ordeal for his parents due to the lack of protocols and resources for these cases in Cuban hospitals.
“We spent days waiting to get an appointment with the only dentist in the entire province who treats children with autism and other neurodevelopmental disorders,” Gabriel, age 44 and the father of the child, told 14ymedio. “The consulting room is in a very narrow space in the Pediatric Hospital and from the moment my son entered he became very upset, because he doesn’t like closed spaces,” he explains.
“I almost had to lie down on top of my child to immobilize him. My wife held his arms and my brother-in-law held his legs. There was no mechanism in place to keep him from getting up from the chair and Pedrín is strong because he weighs about 130 pounds.” Gabriel laments that “the place does not seem at all prepared to treat this type of case. More space and better conditions are needed.”
“There are practically no clinics in any speciality that are prepared to care for autistic children in this area”
“There is no amalgam for fillings in Holguín, so they had to put in a resin that is not very long-lasting.” The ephemeral nature of the material forces the family to go through the same ordeal again or accept the doctor’s advice: “Next time we’ll take him up to the room and give him general anesthesia,” a difficult decision for his parents to make, who fear that the sedative will aggravate the teenager’s health problems.
“There are practically no clinics in any speciality that are prepared to care for autistic children in this area when they have a health problem. I have to go and speak to the doctors beforehand and explain to them that he cannot be in a cramped space, that he cannot sit and wait for hours in a corridor for the doctor to call him. There is a great lack of understanding on the part of the staff at these centers.”
As Gabriel sees it, the island’s health system “is not prepared to manage the health situations that autistic children and their families face.” Most of the time, doctors “who have training in this type of patient are very scarce and in Holguín they are only in the provincial capital, so you have to travel long distances sometimes to do simple things like a dental check-up or to treat a small wound.”
Since my daughter began to show the first signs of autism, my husband and I have not been able to go on vacation anywhere
The testimony of Pedrín’s father contrasts with the recent announcement made by the Cuban Medical Services Marketing Company (CSMC) that it will offer foreign visitors arriving on the island a program for the care of children with autism spectrum disorders in the hotels of the northern keys in Ciego de Ávila.
Dr. Agnerys Cruz, director of the CSMC in that province, told Prensa Latina that the project will focus on the tourist destination Jardines del Rey. There, clients will be able to opt for “animal therapies in the dolphinariums of Cayos Coco and Cayos Guillermo,” in addition to specialized medical care to improve the well-being and quality of life of these children.
The initiative is the result of a collaboration between CSMC and the Canadian hotel chain Blue Diamond Resorts and also includes health tourism packages aimed at adults with social problems. “Interaction with aquatic mammals will be directed by specialized medical personnel and highly qualified trainers,” reads the announcement, which has not left a good impression on many Cuban families.
“It shows a lack of respect, because that’s what we, the parents of autistic children here in Holguín, have been asking for for years, that there be recreational options for our families who live with a lot of burden on their shoulders every day,” says Gabriel after learning the details of the new offerings for travelers. “I find it insulting that they offer those who don’t live here what they don’t offer us.” His discomfort is shared by other parents in a similar situation.
“Since my daughter began to show the first signs of autism, my husband and I have not been able to go on vacation anywhere,” laments Yaquelín, 32, mother of Rosslyn, 12. “When we have wanted to stay in one of those summer packages they sell to Cubans and we ask if the accommodation has some kind of protocol and comfort for children with this type of condition, they only give us evasive answers.”
“I can’t go and spend a couple of nights in a place where they don’t even offer the minimum for these cases”
“I can’t go and spend a couple of nights in a place where they don’t even offer the minimum for these cases: bathrooms for people with reduced mobility, as is the case with Rosslyn, who is in a wheelchair, or safety equipment around the pool. Some of these hotels don’t even have a first aid kit.”
For Yaquelín, a burning issue is food. “My daughter has become fixated on certain foods and doesn’t want to eat anything else. I have to give her fruit compote, beans or chicken every day, but she doesn’t accept eggs or rice, for example. She also refuses milk and some fruits.” Complying with this narrow eating pattern is a headache for the entire family with little income, given that the mother does not have a job and the father works in a department of the Ministry of Agriculture with a salary of around 5,000 pesos.
“In August of last year, the allocation of chicken for autistic children in the province of Holguín, which is three kilograms per month, was interrupted and was not reestablished until this May.” Achieving the return of the subsidized sale of the longed-for protein was not an easy task either: “Parents of autistic children had to complain to all the authorities, write on Facebook, send messages to [President] Miguel Díaz-Canel and to the National Assembly.”
Although the prices for the tourist package for families with autistic children have not yet been published on the Cuban Medical Services Marketing Agency’s website, an employee responded via social media with some details about the offer. “We want families to feel safe, comfortable and to enjoy themselves with their children without worries. Our staff is highly qualified and the facilities are comfortable and safe.”
“We want families to feel safe, comfortable and to enjoy themselves with their children without worries.”
In the event of any health incident that a child may suffer, “our work teams are professionals with extensive training and great empathy,” concluded the employee, who invited families to “come to Cuba to regain their smile, their peace of mind and to leave the care of the most precious thing in life, children, in the hands of first-class personnel.” Along with the luxury of the accommodations, the program promises to help these children develop skills and alleviate their isolation “caused by communication difficulties.”
Just over 300 kilometers from the northern keys of Ciego de Ávila, Pedrín’s family is preparing for the next visit to the dentist and is considering whether, on this occasion, they will have to rely on more arms to immobilize the teenager in the dental chair or, instead, accept the application of general anesthesia with the risks that it entails.
In Gabriel’s daydreams, he defines himself as “a lion” when it comes to fighting for his son’s quality of life, when that day comes he hopes to find a bright and spacious room, decorated with children’s motifs, a dentist, several smiling assistants and a professional and respectful protocol with the patient. In those dreams, there is all the necessary amalgam to close the gap in his little boy’s tooth, without having to buy a tourist package or pretend to be a foreigner.
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