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Cuba guarantees specialized medical attention to children suffering from autism
Brian enters the room and sits on his mothers lap; he smiles and seems not to be listening. All of a sudden, he is alert and grasps a glass of tea and drinks from it. He has not asked whose glass it is. He does not talk. He sits again and begins to make an unintelligible sound with his lips.

Whoever ignores that this child suffers from autism and doesnt know the characteristics of this condition, might be driven to distraction by his apparently undecipherable mannerisms and gestures. But his mother, 38-year old Susan Aguilar Isla, graduated from the university with a major in Chemistry, confesses that her ten-year old son tells him everything with his eyes.

This tender and strong woman recalls that her pregnancy was normal and that her child Brian Rubio Aguilar was very much longed for. After an uncomplicated birth, the boy grew up without showing any signs for alarm in his first year of life; he was even introduced into a day care center with normal children when he was eight months old, until the differences between him and the rest of the children were visible

At first, Susan kept up her hopes. Maybe the child is a little slow, she would think; maybe he is a little hard of hearing "because he didnt react to people calling him or to loud sounds"; but he started to isolate, to fall behind the rest of the children. "Then he had his the first tests in the Childrens Hospital in Marianao, she recalls; everything was normal, and when Brian was a year and half old the psychiatrist diagnosed him with infantile autism."

It was dificult for Susan. She was against taking Brian out of the day care center, though she knew he was the victim of rejection. With a letter from the psychiatrist and the assistance of the psychologist, she kept him there until he was three years old. She had no choice; there was no place to put him in. In 2001, she learned of a classroom in the Vedado neighbourhood where autistic children attended and somebody suggested the possibility of turning that classroom in a special school.

On January 4, 2002 the Dora Alonso Special School for Autistic Children was founded to celebrate the 40th anniversary of Special Education in Cuba. Fidel Castro was present at the opening. In the first group of students of the new school was Brian, who had just turned six.

From those days on, that small and comfortable place located in the Ciudad Escolar Libertad , has become a space to provide support, orientation and complement to the families with autistic children. It was the first of its types created in Cuba to give attention to the children of the capital. A second school was opened in Santiago de Cuba in 2004. In those spaces lots of stories come across and where people like Susan feel that their children are not alone.
The Other House

The house is small, like home. The walls are filled with colourful drawings, pictures of the kids and mirrors, which are very important to help the children consolidate their identity. At nap time, which is vital so they are not altered by the lack of sleep, each of them sleeps on their little mattress under the watch of a teacher or a pedagogical assistant. There are those who cover themselves from head to toe, those who cannot close their eyes and those who even cry or scream.

The school is ruled with love, order, strict hours and an endless patience by the workers. The school has 55 students, 11 girls and 44 boys from all the municipalities in the capital. The children vary between the 2 and 18 years of age.

Imilla Cecilia Campos Valdés, who is 34 years old, has a major in Special Education specialized in Defectology and principal of the school, explains that the children receive attention not only from teachers and pedagogical assistants, but also from specialists in speech therapy, since communication is one of the most affected areas in these children. They also have teachers for music, computer science, physical education, art instructors and psychotherapists. They also have a library and a workshop for handcraft where they do birthday masks, fans and drawings; they also attend inside Ciudad Libertad, a pharmaceutical lab where they wash containers, label them and put them in boxes.

The main objective of the school, as Imilla Cecilia says, is to prepare those who arrive at adulthood, and to increase as much as possible their capacity to assume life with independence.
With the Children

William Alejandro Hernández Sánchez, who is 11 years old, will always remember the moment when he saw five-year old Jehonadan Campos, tie his shoe laces; because this simple and basic act would have been something that autistic Jehonadan, would have not done easily and with spontaneity. William had taught him very patiently. Something very special brings him close to the little boy: "Hes really good, affectionate and he listens to me," he says.

Like William, there are other elementary school students who, since 2007, are part of the club for professional orientation Hombres del futuro. In this club they are company for the autistic children. They already know about the condition, they know how to deal with people suffering from this condition, help them get dressed, give them their snack, and play with then so they get familiar in relating to other humans.

"We communicate with the children. Sometimes we have to make an effort, because they do not pay attention to us and they want to do what they want to do," says a girl. Another one tries to define that "autism is a mental disorder which interferes with the development of the boys and girls suffering from it. They had a disruption in their development, but they are like us."

Just like William, Nora, Enma, Elizabeth, Glenda, Yaumara, Selena or Elianis could tell us a lot. They have lived through moving moments such as having to hug and kiss autistic children for them to get used to them, and even for them to be able to recognize them.

Elizabeth Louis, 10, said that being part of the club has taught her how to communicate herself and to help others, both children and teachers. "I feel I am useful," she said.

Glenda Gómez, 10, said that every time she comes back home she takes with her "the love and discipline" of the school.

Teacher Ángela Rosado, responsible of the club, is a real angel. Graduate in Defectology 27 years ago, she is moved when speaks about the world she works in. "Pioneers realized that autistic children go through their same stages. They understood that they have to help them to do something that is very complicated: socialize. At the beginning they were afraid of some children, and they have gone beyond that because they feel they have to protect them."

One of the details that has shocked Rosado the most during her work at the Dora Alonso school was to teach some children how to brush their teeth "because that is something you learn by watching at how other people do it, almost by imitation, but autistic children have to be taught step by step, just like teaching them how to dress themselves; and thats something that continues surprising me."
About the Syndrome

Movies and other audiovisual aids have spread the myth that autistic people have genius traits. Those who suffer from the syndrome are attributed intellectual abilities normal people dont have. However, the majority of the cases are related to mental retardation and the number of autistic people who can develop abilities in certain fields of knowledge is very low.

Autism is a form of pervasive developmental disorder which is diagnosed within the first three years of life, said teacher Imilla Cecilia Campos. "It affects the areas of communication, socialization and behaviour."

The teacher explained that those who suffer from the syndrome have limitations in a high percentage of the cognitive area; and although the three areas are affected in all cases, the symptoms are not always the same.

"For instance, in the communication area, some children are able to develop spoken language and others are not; although, generally, difficulties to express what they want or need are evident. There are some who repeat exactly what they hear, and within this group, some can repeat functionally and others cannot; which means that some can repeat what they hear and creatively add an answer, and others can simply repeat.

"There are children who, despite not being able to speak, have greater comprehension levels than others. They follow simple and even complex orders. Others cannot speak and can hardly understand any order.

"In the behaviour area, not all autistic children have the same characteristics. Some like routines and like to do the same thing at a certain frequency; and others respond negatively to changes and react if they see that a piece of furniture or painting is removed from a known place.

"Others make specific movements with their hands, are aggressive, hurt themselves, walk on tip toes, go around in circles, or act as if they were deaf because they do not respond to a voice. Just a few can hold a gaze. There are some that have difficulties in kissing; and others who are very capricious with their food, like one child we had who only wanted to eat crackers with guava marmalade or another one who only liked to eat rice."

Regarding the causes of the disease, Imilla Cecilia said that they have not yet been defined. She said that some studies refer to the genetic element as an important factor; others, to environmental factors, and there is always the possibility that autism is related to certain types of mental retardation.

It is a young disease, defined by science in 1943, and which has a low incidence rate in Cuba (only 127 people have been diagnosed and received attention). Worldwide, it is said that schools are very important for children who suffer from the syndrome because there they can increase their functional levels and that it is impossible for those children to progress without family support.
Brian and Julio

Susan is a graduate in Chemistry who works in the Finlay Institute. There, she works in the control of batch of vaccines for children. "I do a lot for my child Brian, but also for the other children, for them to be healthy, for them to develop properly."

Brian has made encouraging changes attending the school. Susan can notice it in the way he seats, carries objects in his hands and picks them up from the floor, and help people to dress him or feed himself.

"I look at him as if he were me," the mother said. "I dont limit myself, he is with me every where I go, to the store, the cinema, the theatre, a restaurant... Sometimes you meet someone who says, 'Your son is fine; he is spoiled. You realize that some people dont know about this syndrome, but I dont limit Brian."
Is school important?

Absolutely. Now I feel that there are more people who care after him. Its not just me and him by ourselves anymore, as I used to see it at the beginning, before school. Ive been able to resume work; to go on with my life.

Brian loves keys. At first sight he knows which key opens a certain lock. This is what the experts call a functional preference. Susan gazes at Brian while she answers one of our questions, "I feel very happy every time I see my son learning the things I teach him. When you teach something to a child who is not autistic, you rapidly see the results. In contrast, it took me ten years to teach Brian how to pee by himself in the toilet. And just now he seems to be learning. I dont give up; that would only make my life miserable. I give my son the best I have, I do it all the time, and I never give up the hope to seeing that hes learning.

Outside, an autistic 18 year old man whose level of progress has enabled him to integrate into society is cleaning the school yard. His name is Julio Marchán Florín. When he graduated, he was hired as the school gardener, a job hes great at because he loves order, he is a perfectionist. One of his obsessions ―besides meteorology― is not to leave a single dead leaf on the ground.
Scientifically Speaking

According to Wikipedia online encyclopaedia, it was Swiss psychiatrist Eugene Bleuler who coined the word 'autism 1910. The word would first take its modern sense in 1938 when Hans Asperger of the Vienna University Hospital adopted Bleuler's terminology "autistic psychopaths" in a lecture in German about child psychology. But it was not until 1943 that Dr. Leo Kanner of the Johns Hopkins Hospital first used autism in its modern sense in English when he introduced the label early infantile autism in a report of 11 children with striking behavioral similarities. However the work of Dr. Asperger was not recognized until 1981.

Autism has been described as a disability which affects mental development and which typically manifests itself in the first years of life. It is the result of a neurological trauma which affects the brain's normal functioning, in areas related to social interaction and communication skills. It knows no racial, ethnic or social bounds. It is claimed that autistic disorders affect 1 of every 1,000 newborns approximately and that they are far more common among males (a 4 to 1 ratio).

People with autism have the same average longevity as the population in general. It is believed that the incidence of the condition is growing worldwide, but there still uncertainty as to whether this is a real trend or merely reflects a greater number of diagnoses. Indeed, the world of autism still poses numerous questions for science, primarily related to the causes behind the condition.


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