Six years ago Hem Sagar Baral’s elder daughter Sylvia didn’t speak at the age of two when her friends learned about many words. Sylvia didn’t utter words, she didn’t communicate, sat silently and showed no interest in learning. Instead of playing with toys, she chose to remain aloof; instead of speaking emitted an eerie, high-pitched keening. It used to trouble Hem Sagar Baral and his wife Kalpana for not being able to know what was really happening with Sylvia.
“It was only after we took her to a day care center we learned that she was suffering from some kind of disorder.” Hem Sagar Baral said, “Else my relatives and even some doctor friends said that it was normal and said that some children speak late.”
In Nepal parents like Baral have difficulty finding doctor to potentially diagnose their children with autism.
Baral family was shocked when they first knew that she was suffering from some kind of disorder. “Some child psychiatrist and even some doctors could not diagnosis the disability. It was after having a long series of discussions with doctors and psychiatrists and my self inspection of her behaviors, we could find out that she was suffering from autism – a disorder that has no medical care,” said Hem Sagar Baral, father of a eight year autistic girl Sylvia.
“I admitted my daughter in various schools. But they ignored Sylvia due to her physical disability,” Hem Sagar Baral said sadly. There were two options for Baral either to go abroad or establish a new care centre. Hem Sagar Baral is now the chairman of Autism Care Nepal. “As a father it was very important for me to create an environment for my daughter where she could at least make an attempt to understand herself and the surrounding in which she lives. Taking note of several problems faced by autistic children, I along with other three parents came up with the idea of establishing Autism Care Nepal,” said Hem Sagar Baral.
Hem Sagar Baral has been taking up the courage of fighting with a kind of disability, which doesn’t have any ultimate care. Autism Care Nepal was established on April 2, 2008.The center has so far have more than 60 parents who have registered themselves to learn remedies to deal with their children and more than 100 parents have inquired about the possible ways out for their autistic children. “The increasing number of parents besieging the offices of psychologists and psychiatrists in their search for remedies speaks largely about the growing number of autistic children in Nepal,” says Dr. Sunita Maleku Amatya, Vice chairman of Autism Care Nepal.
The centre has been providing parent trainings on autism, day care to autistic children, various treatment therapies such as art therapy, music therapy are some of the activities to raise awareness in the on how to deal with the disability in children.
With a seeming suddenness, cases of autism are exploding in number in Nepal and no one has a good explanation for it. And there is no data on the number of autistic children in Nepal.
“There is no specific research on Autism in Nepal,” said Jaganath Lamichhane, a mental health activist in Nepal. He added that “there are strong social, educational and cultural factors that forcefully silence the concern of children growing with autism and even medical professionals have little knowledge about autism. Our society is not willing to accept the children with autism. People do not want to engage with such children. These are the reasons people are not much aware about autism.”
The interim constitution neither has specifically addressed the issue. Lamichhane says, ” No law exists in Nepal specifically to deal with the needs of children with autism. Negative public attitudes towards the children with autism are the leading factor to silence the law in Nepal.”
“What we are doing is still not enough to deal with the disability that is found to be growing amongst children today.” said Dr Sunita Amatya, “We lack professionals, we need to develop expertise on giving therapies, special educators and child caretaker. We also need assistance in terms of materials for educating children and also for awareness”.
Hem Sagar Baral said that public and private institutions should launch collaborative initiatives aimed at deciphering the complex biology that produces a dazzling range of disability. “First of all, we need to promote scientific knowledge to make society understand the reality of autism. The state must recognize and promote the special needs of children with autism as human rights.” said Lamichhane, “We need urgent investment in this sector to develop expertise on giving therapies, childcare takers, and special educators”.
As published on upiu.com
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