When Sabita Upreti first discovered an autistic child, chained up alone in a dark room, she knew her life was about to change. The next tragic child she encountered, locked up, unwashed, with nobody and nothing to engage with, made up her mind. After seven years working as both a teacher, and an education journalist fighting for the rights of rural girls too often denied an education, Sabita joined Nepali humanitarian organisation the National Disabled Fund (NDF) in 2008 as a social worker – a role which took her across the country – and into Kathmandu’s slums, where she encountered conditions she never could have imagined.
“I encountered the worst case scenarios – children locked in rooms and sometimes even left alone with their feces and urine. It was then that I became determined to dedicate my life to the betterment of autistic children,” she remembers today.
That experience began the long journey which eventually led to the establishment of SSDRC. Her first step was convincing her parents to grant her the dowry they had saved for a future husband to set up the organisation. Then there was a long battle with the Nepali government, which didn’t recognise autism and see the need to licence a specialist centre. And then there were the parents who, due to a lack of awareness, resented Sabita’s intrusion into their lives. “Some parents even set a dog on us to force us to run away from their house,” she remembers. “The Nepal government also didn’t believe in opening such a school in Nepal. So, at first, denied registering our organisation smooth way. As a result, it consumed a long time to get legal approval.”
This is why, as well as finally setting up one of the country’s only specialist centres for autistic children, in October 2010, Sabita has worked tirelessly to raise awareness about autism in Nepal, emerging over the past decade as one of the country’s greatest experts on the subject, regularly appearing in domestic media and sitting on numerous government advisory boards.
“As well as our school, we are spreading autism awareness all over Nepal. Still in every step there are formidable challenges and problems to be dealt with. Financial shortage, insufficient dedication from skilled personnel in this field and societal biases are all still common.
“Our work is just beginning,” she adds, “but on the other hand, we’ve already achieved more than I ever imagined.”