While working at the Physical Rehabilitation Centre of the National Disabled Fund under the Social Welfare Council, Sabita Upreti one day visited the squatter area near the Hanumante River in Bhaktapur. There, she witnessed an eight-year-old boy tied with a rope, covered in faeces and urine, near a heap of garbage in front of the settlement.
She was deeply saddened and teared up by the sight. She could not help but think to herself – this child also deserves to play and have fun like any other child. Upon inquiry, she got to know that the child had autism.
Deeply bothered by the scene, she began contemplating the necessity of caring for such children. She scoured the valley in search of any establishments that were catering to their needs but found none.
Later on a Saturday, accompanied by her siblings, she went to visit the boy. Alongside the child, they also encountered his parents. First and foremost, she pleaded for the child to be untied, but the parents remained hesitant. They feared that untying the rope might lead the child to flee and potentially harm others. However, she persisted and persuaded, leading the parents to reluctantly remove the rope.
But the next scene left Upreti troubled even more. The boy dashed straight to the garbage heap, retrieved a discarded book page and aimlessly started flipping it around. Upreti had assumed that the child would dash towards the food and toys, she was holding, upon being freed. She was left stunned.
Upon being freed, the boy’s face radiated joy. He relished the newfound freedom to roam and promptly engaged in play.
Upreti started thinking, “I got the education and a good life. Here, people still have to understand what living means. I have to do something for them.” Thus, with this determination, she started to work for children with autism.
She left her job the next day. One such fateful day in July 2009, where she found a child in a squatter area became the ‘turning point’ of her life. For 13 years, Sabita Upreti has dedicated her life to serving autistic children by establishing special schools and rehabilitation centres.
From desire to destruction
Born in Baiteshwor rural municipality of Dolakha, Upreti’s family believed that their daughter should be educated and empowered. So she got the opportunity to study. She passed her entrance exam in 2000 from Baiteshwor Secondary School with first division. Back in the day, clearing the entrance exam with first division from government schools was not a trivial matter.
Her family decided to send her to Kathmandu for higher education. But it was difficult to gather the money for the expenses. Realising this, she started teaching at Saraswati Secondary School in Jorpati. After seven years of teaching, Sabita Upreti was appointed as Central Management Officer at the Physical Rehabilitation Centre.
After the incident, she resigned from her job and joined social service, but she had nothing, neither money nor work experience, but the heart to work in the service of children with autism. While working in the field of disability, she learned a little about autism, but it was not enough to get involved in that field full-fledged.
So she did a lot of self-study and travelled to India to gather more information, even undergoing a six-month training programme. During this time, she learned that autism is a condition observed in children who experience incomplete brain development, despite having healthy and intact bodies. These children exhibit symptoms such as delayed speech, difficulties in communication, self-isolation, and challenges in social interaction.
This newfound understanding led her to recognise that therapy and cognitive engagement are essential components of treatment. Despite acquiring substantial knowledge, financial constraints remained a challenge. She ended up using her savings from her job for training.
Filled with enthusiasm to open up an organisation, she returned to her village. Meanwhile, her parents were preparing for her. When she shared her plans with her parents, her father disapproved and even scolded her saying, “This is the time to build your own life, why burden yourself with the responsibility of others’ children?”
However, her mother’s unwavering support bolstered her confidence. Defiantly, she declared to her father, “I have no intentions of marrying at this moment. Instead of saving for a future wedding, invest in my vision now.”
Sabita Upreti walked out of her house with the Rs 500,000 her family had collected for wedding expenditures. On her birthday in 2010, she inaugurated the Special School for Disabled and Rehabilitation Center (SSDRC) in a rented residence in Kadaghari, Kathmandu, and provided shelter for two children.
It took her a year to get five children at the centre. While talking about her school intending to provide autistic children with treatment and education, some alleged her saying she is exploiting their offspring for financial gain. Some even let their dogs loose on her. She recounts, “I still bear the scars from dog bites on my body.”
Gradually, she got children with autism and set up the learning environment according to their preferences. Even though it was a minimal effort, the outcomes were undoubtedly for the good. The children began comprehending the conversations, demonstrating the ability to draw, and managing personal tasks, like other individuals without disabilities.
With the improvement in the condition of these children, Sabita no longer had to visit anyone’s house. Parents started seeking her out with their children who had autism. In the second year, the number of children gradually increased, reaching 13.
However, as the number increased, so did the challenges within the organisation. Parents expected children who hadn’t spoken in 10 years to start speaking within a month of enrolling in school, which was not possible. Consequently, she intensified her efforts to explain autism to the parents. So, gradually, the parents also began to trust her words.
Now, the organisation has expanded to three branches in Narephant, Gothatar, and Bhaktapur. Today, Sabita Upreti is providing special education and rehabilitation to 60 children and teenagers across these locations. So far, the organisation has served over 500 such children.
It all begins with the mindset
Those with autism have trouble doing even the simplest and most common tasks such as dressing themselves, going to the toilet, and washing their hands afterwards. And parents don’t try to teach them thinking they won’t understand. “Firstly, parents should acknowledge their child’s condition and promptly seek medical and therapeutic assistance,” she says.
The main objective of Sabita Upreti’s organisation is to break this misconception and help the children to do such simple work to read and to rehabilitate them in society by teaching them such skills.
“There has been a delay in raising public awareness about autism,” she says.
The institution caters to children aged 3 to 7 until they reach the age of 13. They have the services for pickup from home at 9 am and drop-off at 4 pm. Meanwhile, throughout the day, the children receive therapy alongside various learning activities.
Sabita Upreti knows very well that in this time of scarcity and hustle and bustle, such children become a financial and mental burden for the family. And she is doing the work of turning this adversity of the family into a favourable one.
“It takes patience to take care of children with autism,” she says, “That’s why I give special training to every teaching staff who joins SSDRC.”
Sabita Upreti has today left an extraordinary impact on society through such simple works. She has been awarded the International Courageous Women Award-2023 by the Human Rights Council of India, the Janasewa Shree Padak (for social service) by the Government of Nepal, and the National Youth Talent Award (for social service and education) by the Ministry of Youth and Sports.
She has embraced motherhood for many children despite not giving birth, “I feel as though these children are my own, and it brings me joy to serve them.”
Having said that, the number of children with autism is increasing day by day. One person or organisation alone can no longer undertake the task of their education and rehabilitation. “Now the state should take the lead in this endeavour,” says Upreti.
