I, Sabita Upreti, was born in Namdu, a remote village in the Dolakha district of Nepal, in 1984. We did not have the opportunity to come to the city for higher education because of poor financial conditions, but I was lucky that my cousin lived in Kathmandu. So I was able to come to the capital in 2000 after completing my school studies, and begin my career. I joined a college in the faculty of management and started a job as a teacher in a general school in 2001. While holding many different positions at the school, I also worked part-time in journalism as a newspaper reporter, sub-editor, and a TV host anchor. But it wasn’t enough.
From my earliest childhood, I held a dream of changing the condition of rural Nepal, as many female are far away from education. In 2007, I made a drastic change and entered into the disability field. I had worked in the governmental social welfare council, the National Disabled Fund, as a Center Management Officer (CMO), an organisation that was supported by Handicap International.
This was the turning point which inspired me to devote my life to helping the needy people of society. Over the course of my career, I have received a lot of encouragement and inspiration in witnessing the achievements and happiness of people with disabilities. While I was working for the National Disabled Fund, I completed many field visits to villages and slums area of Kathmandu valley, and different remote area of Nepal, accompanying community workers to observe the condition of people with disabilities. This was the first time I truly encountered autism – meeting many children with Autism Spectrum Disorder (ASD) who were chained and locked inside their rooms with nobody there to look after them. It touched my heart to see the conditions these special children were forced to endure. I started to search many organizations to refer such children to
for their proper treatment and education, as well as went through the policy of Nepal Government. I referred many children for inclusive education, but many general schools refused to enroll them, a few schools hesitated, and very few private schools would enroll children – only due to the force of parents and public pressure. Parents, of course, needed to bear huge monthly fees of children. Yet there was no special attention, care or therapy for children with ASD in these general schools, however expensive the monthly bills. The children were there only for time to pass, condemned to spend many years in single class. As a result, children felt so dominated and frustrated from the isolation of general school. After I had witnessed these hard conditions for children with ASD in general schools, I decided to open a special school for children with autism. I didn’t have much knowledge and idea about autism at that time, but had started to gain knowledge through the internet.
When I eventually opened SSDRC, in 2010, I faced a lot of problems, and struggled to rehabilitate and include these special children. I had a very difficult time collecting children from their homes, and had to meet and carefully counsel often reluctant
parents. They simply didn’t understand what I was trying to do. Many parents didn’t want their children to be sent to a special school, and they blamed us, and often didn’t behave well towards us during field visits, due to a lack of awareness. Some parents even unleashed dogs to force us to run away from their homes.
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
Nepal government also did not appreciate the need for specialist schools in Nepal, so, at first, it was a challenge to register SSDRC. As a result, it consumed a long time to get legal approval. At the very beginning, we had started with just two special children. We didn’t have strong financial support, trained staff or a cooperative social environment. To fund SSDRC, I had collected money from my parents, relatives and friends – money they had saved for my marriage as dowry – by convincing them these children are more important to me than ever marrying, or raising my own family. I encountered such great difficulties trying to establish SSDRC in a systematic way. Even the government was unaware about autism and couldn’t recognize it. As a result there was a lack of government policy, or any separate curriculum. Against this background, we also embraced the pervading societal challenges, and went to work in the field of advocacy and awareness-raising, as well as the work we did in providing services for children. To support our mission, we have been grateful to receive help from many experts from different countries. We focus children for daily living activities and different therapies and accept and offer tailored services to children of very different ages and cognitive abilities.
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.
At SSDRC today, there are four class levels – A, B, C and D. Initially, most children join class D, and after improvement are transferred to C, and so on. Level A is structured to rehabilitate students for general education, and children typically either transfer to general school or vocational training after leaving SSDRC. Still today, most general schools hesitate to enroll children with ASD students, so we help orientate staff at the school. As a result of all these hard efforts, we have witnessed tremendous successes in a very short time, which have in turn convinced parents of the correct course, and increased awareness among the wider population. This has supported us to reach up and help formulate Nepal’s future ASD policy and curriculum development. It has been a great opportunity to advise the government of formulating policy regarding autism.
Our work is just beginning, but on the other hand, we’ve already achieved more than I ever imagined.