MAR 29 –
Pritish Shakya, 10, adjusts his thick glasses and shifts his attention back to the game he’s playing on his laptop. As he rams the keys, he keeps up a running commentary, telling me about the games he likes, the websites where he finds these, how much a Macbook Pro costs, among other things. “I use the Internet a lot, but I don’t have a Facebook account yet,” he adds.
Pritish is autistic. But you wouldn’t know it to look at him. In fact, spend some time with this young man and you’ll get the impression that he is much sharper than other children, given all he appears to know about computers and technology. And all this is thanks to his parents, and the support they’ve given him.
Father Dipak Ratna Shakya, 50, a civil engineer by profession, and mother Sabina, 46, a homemaker, both believe Pritish has a promising aptitude for mathematics and science.
Now in the fourth grade at Summer Hill School in Sinamangal, he scored 82.5 percent in his recent second term exams—stellar marks, although he admits he could’ve gone a bit better in Nepali.
Autism Care Nepal estimates that there are more than 300,000 sufferers of autism in the country. But the availability of exact data on the condition is hampered by the fact that many cases go undiagnosed. And Pritish’s parents know the challenges of this firsthand.
For a long time, Dipak and Sabina had been utterly clueless about what was really going on with Pritish. His eye contact skills were poor, and certain sounds annoyed him extensively. “Whenever there was, say, a helicopter flying overhead or something, he would clasp his hands over his ears—he really hated that,” Dipak remembers. “We knew something wasn’t right, but we couldn’t put our finger on it.”
At the age of three, Pritish’s mental development didn’t seem to be proceeding as expected, and it was only at five that he could communicate sufficiently with those around him. Certain now that this was cause for concern, Dipak went to hospitals around Kathmandu, but none offered clear diagnoses.
“They couldn’t tell it was autism,” Dipak says, handing over Pritish’s medical files. “They seemed just as unaware about the condition as we were. But they’re doctors…one of them should’ve caught it early on.”
So Dipak decided to resort to a technology that was then still very new to most people in Nepal—the Internet. For hours a day, he would trawl websites, looking up symptoms and diseases and possible treatments. But it wasn’t until two years later, and after a lucky meeting with Prajwal Man Singh, an occupational therapist, that the truth was finally established.
The therapist had put Pritish through a CARS (childhood autism rating scale) test, and it showed he was very close to being severely autistic. His parents were shocked.
“We couldn’t sleep for days,” Sabina says. “And Dipak was constantly beating himself up for having lost so much time looking for an answer. An early intervention could’ve changed everything, we thought.”
But they knew they couldn’t indulge in regret—Pritish needed to be helped, immediately. “Once we knew what he was suffering from, we were able to find resources online that told us what to do, how to be with him,” Dipak says. He was so determined to have more information that he even ended up going to Delhi to attend trainings with Action in Autism, and began interacting a lot more with other parents who were going through the same thing. He also discovered a book, Recovering Autistic Children, edited by Stephen M Edelson and Bernard Rimland, and published by the Autism Research Institute, San Diego, that he claims was instrumental in helping him understand his son better.
“The book basically advised you to get to know your child first, what his needs were, and to slowly adapt to these,” he says.
Pritish suffered from unusual spells of hyperactivity, and was generally very unsocial. It became especially difficult when he was in public settings, which appeared to trigger the frenzied and sometimes violent behaviour, and Sabina says there were people who actually slapped him because they didn’t understand. The two decided a change of scenery was in order. From their home in the noisy surrounds of New Road, they moved to an apartment in Khusubu, and eventually to mid-Baneshwor. “It wasn’t ideal, having to leave our house,” Sabina says. “But our son was our biggest priority and we had to do what was best for him.”
That was only the beginning of the many adjustments they were soon to make. Getting Pritish to study, for instance, was a challenge on its own, and they found they had to approach the task more creatively. “He loved movement, and I knew it was important to keep him excited,” Dipak explains, describing how he began using rolling letters on PowerPoint to help retain the little boy’s attention while learning the alphabet.
“I’m proud of how my parents handled the situation,” Bindi, Pritish’s 19-year-old sister, and a BBA student at the Symbiosis Center for Management Studies (SCMS) in Noida, wrote in an email. “They had to make a lot of sacrifices, but they never complained…I feel like they’ve done a really commendable job.” This is reiterated by Subash Timilsena, an educator from the National Institute of Psychology, who looked after Pritish’s case between 2010 and 2012, and who praises Dipak and Sabina for how willing they were to accommodate their son’s unconventional needs. And he adds that in monitoring his academic interest, his cognitive and social development, and general behaviour, he had seen some marked improvements in the young child.
“He was already showing a great inclination towards math when I met him,” says Subash. “It was just his conduct in social situations that was the issue. Aside from that, mentally, Pritish was very sharp, very logical.” And that was what they focused on during their sessions—trying to nurture his logical mind, while encouraging him to build peer relations.
The results were slow to appear, and a lot of structured learning and dedication was called for, but Pritish was making steady progress. And today, he is able to go to school almost every day, interact with others, and keep up in class. And math and science have come to comprise his favourite subjects, along with a newfound penchant for origami.
“I go to the school, have the teachers give me updates on him every day, and it’s usually good news. I can’t tell you how happy it makes me to see him adjusting and improving, something we didn’t dare hope for just a few years ago,” Sabina says.
Dr Sunita Malekhu Amatya, Autism Care Nepal’s chairperson, says that the role played by parents and other family members is enormous in helping children cope with autism. “As prime caretakers, parents are key points in a child’s world; if mothers and fathers can’t understand or adapt, the kids will be lost,” she says.
Dr Amatya also believes that instead of perceiving autism as a disability, schools and the wider society need to understand that this is a condition that can actually foster extraordinary capacities in patients. After all, it’s been proven that many well-known figures who have excelled in various fields—scientists and artists, among others—were said to be autistic.
In this regard, the UK-based Telegraph in February quoted Michael Fitzgerald, professor of psychiatry at Trinity College, Dublin, as saying that the characteristics linked to autism spectrum disorders (ASDs) were the same as those associated with creative genius. “Isaac Newton, Albert Einstein, George Orwell, H G Wells and Ludwig Wittgenstein [are] examples of famous and brilliant individuals who showed signs of ASDs including Asperger syndrome,” the report read.
But for Dipak and Sabina, ensuring Pritish is healthy, and eventually able to lead an independent, dignified life, is ambition enough at this point—they want to put as little pressure on him as possible, and allow him to discover his own interests at his own pace.
“I don’t need him to be extraordinary; I just want him to be happy,” Sabina says.
April 2 is celebrated as World Autism Awareness Day
Placing his fingers gently over the piano, Nirakar Bista begins playing, his mother and father watching him. The tune of a popular Hindi song soon fills the room, and the adults’ faces break into smiles.
“I think he’s great,” says Balaram, the father.
Fifteen-year-old Nirakar is an autism patient, and goes to the Nile Stream School as well as the Nepal Academy of Psychology. He is a calm, sociable young fellow, with a special gift for music. Nirakar’s parents recall the first time their son came across a piano; he was two and had just received a small version of the instrument for his birthday. “Soon, he was playing Twinkle Twinkle on the keys, just like that,” Balaram says. “No one even taught him.”
The young musician kept at practicing, and was eventually picked to play in a Parents’ Day function at school, and his father could hardly believe it was Nirakar on stage. “I actually went to the teacher after the programme to ask if it had really been him playing the entire time,” he laughs.
Nirakar is currently being coached in music by Umanga Jung Parakram Shah, also the director of the Nepal Academy of Psychology, who says it’s been wonderful to see him find his passion. “This is how it should be,” he says. “We should give kids the chance to do what they love, instead of forcing what we want on them.” Umanga is now helping him work on his first album. Also coming up is a show in Boudhha for World Autism Awareness Day on April 2, for which Nirakar has been preparing. “I think this is an extremely good opportunity for him to show what he can do,” his mother, Neelam, says.
Balaram and Neelam had noticed something was amiss with their son early on, but it was only at the age of five that he was finally diagnosed with high-functioning autism at the Sri Ganga Ram Hospital in India. “It’s unfortunate that information and awareness on the condition just doesn’t exist in Nepal,” the father says. “It would’ve been better to have him diagnosed here.”
But that was a long time ago, and Nirakar’s development since has been nothing short of miraculous, they say. “He’s so disciplined, doing yoga every morning, working so hard on his music,” Neelam says. “He amazes us constantly, and we’re very proud of him.”