Five-year-old Bishal Tamang’s foot is tied to the bed with a green shawl. A thin curtain separates the bedroom and a space for eatery, where the boy’s mother, Januka, is busy cooking and serving snacks to customers.
Meanwhile, Bishal bursts into a sudden paroxysm of excitement. Flapping and flailing his arms, he jumps up and down; he yanks his tethered leg in the process, the impact is enough to plunk him down, but he seems unaffected—his head bears many scars. Januka calls his name, to quiet him down, to assure her son that she is right there. The boy can’t speak. He just lets out a gurgling noise.
“I don’t know what is exactly wrong with my son,” says the 30-year-old mother, who confesses that it is hard to comprehend what the doctors tell her.
Januka came to Kathmandu from Udaypur about a year ago for her son’s treatment. She took Bishal to Kanti Hospital where the doctors prescribed him medications. The medicines have improved her son’s condition a lot, she says. “But, I still have to keep him under restraint. The minute I set him free, he runs away or knocks his head somewhere. Only two weeks earlier, he ran away from the room. It took nearly three hours to find him.”
Januka’s husband, who is currently in India, has left his her and their son. The mother and son are all by themselves.
While Januka is unable to name her son’s condition, Sabita Upreti, founder and chief executive director at Special School for Disabled and Rehabilitation Centre (SSDRC)— who got hold of Januka a few days back, says Bishal is most likely suffering from a severe case of autism.
Hem Sagar Baral, founding member of Autism Care Nepal—an organisation set up by the parents of autistic children, says while parents in urban areas have been trying to raise awareness about autism, the level of awareness in the rural areas is almost non existent. “Autistic children are being tied to cowsheds which pretty much explains about the breadth of their parents’ understanding about autism, which is a neurodevelopmental disorder” says Baral.
Although there is no reliable estimate on the number of autism sufferers in Nepal since autism is not widely known, Autism Care Nepal estimates that the autistic population lies somewhere from 30,000 to 60,000.
While scientists have been unable to ascertain the cause of autism, studies show that genetics and environment plays a big role. There is no cure to Autism but therapy and behavioural interventions can bring about substantial improvement.
“Autism is not a disease, it is a condition,” says Baral.
According to him, although Autism Care Nepal has been receiving monetary support from both governmental and non governmental sources, the organisation is still struggling for resources. SSDRC is also going through a smiliar predicament.
SSDRC founder Upreti says the children who come to the rehabilitation centre belong to different all backgrounds. “It is difficult for us to run the centre because we don’t have the adequate resources,” says Upreti. “The centre is sustaining through donations and fundraisers.” The Pepsi Cola-based SSDRC, which is situated about 20 minutes walk from where Januka is living, has 40 autism sufferers in the 3-22 age bracket, and at least 20 of them require round the clock attention.
Both Upreti and Baral are of the view that there should be a policy-level intervention to raise awareness about autism and help the people sufferering from the condition. They say early and accurate diagnosis is important because early intervention is critical to the child’s progress.
In Bishal’s case, Upreti believes that medication and proper therapy could significantly improve his condition. The medication and therapy could cost up to Rs 25,000, and there should be at least one person dedicated to taking care of the boy.
Both Januka and Upreti are trying to find sponsors for the Bishal’s treatment. But for Januka, it is difficult to manage time to go around seeking help for her son. “How do I go out seeking help when I can’t leave him alone for a minute?”
The money she makes selling tea and snacks is barely enough to feed herself and her autistic son, and pay the rent. Januka plans to move out from the room, close the eatery, and start selling fruits and vegetables. She has already purchased a small wooden cart, and she is hopeful that vending fruits and vegetables will help her earn a decent income.
And since she can’t leave her son on his own, Januka says she will probably have to leash Bishal to the cart. “I know it is is something no mother would do to her child. But I have no choice. I have to earn money for my son’s treatment,” she says.
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