My story ‘Silent sufferers’ published in The Kathmandu Post on Saturday, March 31, 2012. Here is a link to the pdf version: http://epaper.ekantipur.com/ktpost/showtext.aspx?boxid=14312234&parentid=16742&issuedate=3132012 and for web version: http://www.ekantipur.com/2012/03/31/saturday-features/silent-sufferers/351523.html
Four-year-old Binu Dangol enters the room with her mother and father, dressed daintily in a blue t-shirt and trousers, her hair done neatly, but I can see that she’s scared. She leans away at the sight of me and my camera, ready to take flight, and I have very little idea of how to comfort her.
It was an International Reportage Workshop with photojournalist Philip Blenkinsop, jointly organised by photo.circle, Pathshala South Asian Media Academy and Oslo and Akershus University College of Applied Sciences, that had triggered a desire within me to shed light upon stories that are yet untold. Among many such issues that exist within our country, it was the silent sufferers of autism—a lifelong neurodevelopmental disorder—that particularly caught my attention. And Binu is one of them.
Binu’s parents—who own a small grocery store—tell me they had been worried because their daughter had not begun speaking even after she’d reached the age of two. While at first, they’d been hopeful that the silence was temporary, their concerns
multiplied over time, as she seemed increasingly incapable of responding verbally. This being an otherwise healthy child, they were at a loss as to what to do.
Desperate, they decided to take her to a dhami (local healer). They were told that it was the influence of a spirit, and a number of rituals were recommended, but nothing worked. “We tried everything,” says Bimala, Binu’s mother. “We just wanted to hear her speak. I still feel like she’s going to open her mouth one day and speak.”
Eventually, after an evaluation at Teaching Hospital in Kathmandu, the Dangol family were able to gain some clarity. They were informed that their daughter had major symptoms of autism spectrum—a disorder they were completely unfamiliar with. Binu’s father, Birendra, points at my camera and tells me that she had a similar reaction to the equipment at the hospital. “She just wasn’t ready for treatment,” he explains. “So we brought her back.”
Binu, who had been enrolled in a boarding school at the time, was pulled out and taken home. Today, she hangs around the grocery shop with her mother and father, mostly playing by herself.
Lack of awareness
Researchers say one in 110 children suffer from autism globally, and boys are four times more prone to the disorder than girls. Studies also show that more kids are likely to be diagnosed with autism in the year 2012 worldwide than AIDS, diabetes and cancer combined.
And in Nepal, out of 12.8 million children below 18 years of age, approximately 117,000 are known to be autistic—rather shocking considering not many people are even aware of the disorder here. There has been a recent rise in the level of awareness, owing to the growing exposure of particular cases. But then again, until official data can be collected, it is difficult to project exact figures or execute long-term awareness programmes.Matters are made worse by the fact that there is currently no cure for autism.
Back in Kathmandu, a young boy is busy with his lessons. He works on assignments for different subjects—drawing, painting, simple math as well as grammatical tasks.
In between, he fields questions from his mother.
Kreet Amatya is an autistic child, whose parents are both doctors. Every evening Dr Sunita Amatya, Kreet’s mother, puts him through a structured teaching routine that allows him to pick up the basics of a number of different skills, and he has been flourishing under this system. “Kreet loves drawing,” she says. On cue, Kreet picks up a piece of paper and begins to sketch a summery scene with sun, clouds and umbrellas, as his mother looks on with a smile.
Kreet goes to a montessori school and is an excellent example of how the right kind of support can help autistic children. His parents have arranged to have a caretaker accompany him to school, to help him cope better in a social environment. “It was initially very difficult to diagnose,” says Dr Kapendra Amatya, Kreet’s father. “Even the pediatrician we went to at the Bharatpur Cancer Hospital couldn’t figure out that our son had autism.”
It is, of course, a constant battle, they say. “It’s not something you can take a break from,” explains Dr Sunita. What helped, though, were the classes they took on autism in India, which gave them effective pointers on how to look after an autistic child. In Nepal, Autism Care Nepal currently conducts such training programmes for parents.
Autism Care Nepal—the only not for profit organisation for autistic children in the country—was formally established in April 2, 2008, by a network of concerned parents.
Hem Sagar Baral, whose daughter Sylvia is autistic and suffers from speech difficulties, was at the helm of this venture. He recalls his own experiences, where, like Binu, Sylvia had been verbally unresponsive at the age of two. “She didn’t utter a word, she sat silent all the time and showed no interest in learning,” he says. Sylvia was taken to a child psychiatrist and other doctors, but they couldn’t detect any problems. And admitting her in schools didn’t work out, as she found it impossible to socialise with her classmates.
Hem was thus faced with two options—either take Sylvia abroad for care, or establish a care facility right here in Nepal. Eventually, after gathering a number of other parents who were going through the same issue, he opted for the latter, bringing to life the Autism Care Nepal centre.
The centre has so far trained 150 mothers on ways to care for autistic children, and besides providing parent training, also offers day care for the children, various treatment therapies—art and music, for example—and works to raise awareness on the condition.
Dr Sunita, who is also the Chairperson of the centre, says, “Autism is a global public health concern and people in Nepal need to be exposed more to its probability. Only early diagnosis can lead to early interventions, which could be instrumental in helping these children learn to communicate, exist and cope with societal factors.” She says that more than 60,000 to 70,000 people in Nepal are currently living with severe autism spectrum, a high level of the disorder that is associated with all sorts of psychological and social consequences.
“Care centres need to be established in major cities, so we can deal with this problem head on,” says Dr Sunita. Additionally, she suggests that public and private institutions launch collaborative initiatives aimed at deciphering the complex biology of this disorder, which produces a wide range of disabilities.
Structural questions aside, Dr Sunita explains that what needs to change ultimately is attitude. The perception of autistic children in Nepali society is still largely negative, reflected in the fact that no laws exist that deal specifically with the needs of those with autism. These kids are instead considered misfits and even parents themselves are mostly in denial about the condition and its possible consquences. Until we learn to accept and embrace the condition for what it is, we will be relegating these little ones to a lifetime of physical and mental discrimination. April 2 is the fifth annual World Autism Awareness Day.