Danae Mouso Díaz, the mother of a teenager with autism spectrum disorder, shares her experience on April 2nd, World Autism Awareness Day. “I am the mother of Samuel Enrique. A teenager diagnosed with autism spectrum disorder. This is a very difficult diagnosis; there is a lot of ignorance in society about what autism is.”
“The Psychiatry service at the Octavio de la Concepción de la Pedraja Pediatric Hospital. In conjunction with physiatry, organizes exercises with the children to work on their laterality and coordination. We have also received guidance on activities to do at home. Massages to help them relax, feeding therapy, and cultural activities to promote socialization.” However difficult it may be, the fundamental thing is to accept the diagnosis in order to begin working. The younger the child, the greater the chances of improvement. Although there is no cure, it is possible to improve behavior, socialization, and language.
Autism spectrum disorder is a set of neurodevelopmental conditions with significant impairments in communication, social interaction, and behavior. Holguin is one of five territories in Cuba where children and adolescents with autism spectrum disorder (ASD) receive care from an interdisciplinary team. As part of a collaborative project with the Swiss NGO Medicuba. This project is designed for the comprehensive care of neurodevelopmental disorders in patients from birth to 18 years of age. As well as for their early detection, diagnosis, and intervention.
According to the coordinator of this project and specialist in Child Psychiatry, Lisandra Ramírez Díaz: “Neurodevelopmental disorders include ADHD (Attention Deficit Hyperactivity Disorder). Communication disorders; and intellectual disability.” Specific learning disorders, movement disorders (including stereotyped movements). Autism spectrum disorder are among the conditions diagnosed at the Holguin Pediatric Hospital.
Since 2014, a multidisciplinary committee has been established at the Holguin Pediatric Hospital to diagnose autism spectrum disorder. This committee is composed of professionals. Such as psychologists, occupational therapists, special education teachers, pediatricians, physiatrists, geneticists, neurologists, and child psychiatrists. They meet on Mondays in the Psychology Clinic at Gate 25. Also where patients are referred from various health areas within the municipality of Holguin. As well as from other municipalities in the eastern region.
Also the expert, who also holds a Master’s degree in Community Mental Health, notes that the committee’s activities include a workshop for adolescents. A sibling workshop, and therapy sessions to guide families in managing their children’s condition. The multidisciplinary team joins the therapies conducted at the Haydée Santamaría Cuadrado Special School. Where they guide educational approaches, discuss pharmacological treatments, and address other topics of interest to the family.
Play observation and in-depth interviews with the family are conducted. Autism diagnostic scales are administered, and each specialist orders additional tests to rule out other conditions that may be associated with autism or to establish a differential diagnosis. An evaluation by the Diagnostic and Guidance Center (CDO) is also requested. As well as a psychoeducational assessment if the child is in preschool or primary school.
Depending on the children’s IQ, since many also have other neurodevelopmental disorders. Such as intellectual disability or attention deficit hyperactivity disorder (ADHD). They are placed in mainstream or special education.
In January of this year, cognitive stimulation therapies for children with neurodevelopmental disorders resumed. These therapies include children with intellectual disability, communication disorders, ADHD, and autism. “In these therapies, in addition to exercises to improve cognitive ability. We provide occupational and speech therapy, and we continue with socialization therapies. During this time, we have seen many improvements with the children. So we are grateful to their families. Anxiety and depression have decreased, and socialization, communication, and language skills have improved,” Ramírez concluded.
Autism presents in a variety of forms and degrees. Each autistic person is unique, with their own strengths and challenges. Their inclusion in educational, work, and social environments is fundamental. Autistic people must have equal opportunities to participate in and contribute to society.
Moreover the rehabilitation exercises and care received at the Holguin Pediatric Hospital are crucial to this end. Significantly impacting their quality of life. Yisel Cayard Domínguez, mother of Thiago Armando Rivero Cayard, recounts that she had her suspicions since he was a toddler. Around the age of two, when he stopped making eye contact and stopped communicating and interacting with his family. Then neurodevelopmental consultations began, and his improvement has been steady.
“These projects help motivate them, teach them to follow instructions, and they do exercises. The speech therapist gives us guidance on how to stimulate their behavior. Also this way, we learn, participate with them, and grow together. Thiago has started saying words; now I ask him questions, and he answers. He finds joy in interacting with other children and participating in this project filled with love. We are willing to support them in every way necessary so they can improve all aspects of their lives, have a happy childhood, and a future where they can be independent.” “We are very happy with the support he has received from the pediatrician and the school in his improvement,” she said.
For her part, Ivismari Nodales Pupo, mother of Efrén Gerardo González. She recounts that her son was diagnosed at age four and his condition worsened over time. He began a process of follow-up at the hospital. With consultations and tests that led to the diagnosis. “Regarding the therapy he receives, it has been very beneficial for me as his mother and for him as a patient because, as a result, his behavior has improved, he has been calmer, and his language skills have improved.
Nowadays, he says many words he didn’t say before, and that is a result of the therapies. I feel very satisfied and grateful to the program and the committee that works with children with autism for the effort they are making to ensure the children feel happy and develop their mental and physical abilities. With the goal that the child will be independent and self-sufficient in the future.” There is a great deal of social ignorance surrounding autism.
Instead of focusing solely on the difficulties, it is valuable to recognize the skills and talents that many people on the autism spectrum possess. In Holguin, we are contributing to improving the management and care of these individuals.
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