Autism Awareness and Advice – An Interview

Today is World Autism Awareness Day. Every year on 2^nd April, organizations working for autism around the world celebrate the day with unique awareness-raising events.

On this occasion, we had the opportunity to talk with Sabita Upreti, founder of Special School for Disabled and Rehabilitation Center (SSDRC) in Nepal.

Background information

SSDRC is a non-profit center for children with ASD that was established in 2010 by Ms. Sabita Upreti. According to the Centers for Disease Control and Prevention (CDC), 1 in 68 children is affected by ASD. The World Health Organisation (WHO)2016 research paper states that the prevalence of ASD in Nepal is 0.300% among 10-13 years old people. SSDRC provides special education, therapy, and related services for children and families in Nepal. It was founded on the belief that each person with ASD has the capacity for growth and development, a right to services that enhance well-being, quality of life, and opportunities to learn.

© GMB Akash

Interview 

What incident or event influenced you to set up an organization focusing on Autism?

I still remember one young child I met 10 years ago in a slum area of Bhaktapur. He was chained by his parents to his bed. He was an ASD child. But with no education and unstable income, his parents did not know anything about autism. He was treated as a schizophrenic. I would say that a helpless child and his parents were the ones who pushed me towards creating a better space to treat children like him. But I didn’t find any concerned organizations for autistic children. Even the government had no proper centers focusing on these children. So, to provide a better treatment facility and opportunities for them, I started SSDRC in 2010.

Tell us more about your organization and ongoing projects?

At SSDRC, our belief is that every autistic individual is unique and has his or her own special qualities. We know and see the strengths of the children and help them develop the areas where they need help. I started SSDRC with 2 children, and now we are able to provide education and therapy services to 45 children. With the help of media, we have focused on spreading awareness about autism to dissolve cultural biases against autism and to encourage families to pay attention to the symptoms of autism instead of hiding them. Our motto is to cater to the needs of autistic children and make society ASD-friendly.

How do you manage the funding part of your NGO?

I started this organization with no proper financial plan. Fortunately (smiles), at that time my parents were trying to get me married- and you know how expensive it is for a family to marry off a daughter. I fought with my family and relatives for weeks to make them invest the money in my organization rather than spending it on a fat wedding ceremony. I promised I would not ask for a penny when I decide to marry in the future. I was able to collect 5 lakh rupees ($5000) to start out.

I am thankful to all the many individual donors who have been supporting me over the years, especially Non-Resident Nepali (NRN) and Nepalese working abroad. I have also initiated a small entrepreneurship program to sustain our organization where women and children with ASD make products like bags, jewelry, etc. from local resources for sale.

What is your mantra when it comes to finding the right funding?

Fundraising is the art of teaching the joy of giving. I need to continue my work with full dedication and serve with a smile and I will find the resources to fulfill the vision of my organization. There’s a saying in Nepali, ‘ta aat, ma pugauchu‘ (Where there’s a will there’s a way).

What advice do you have for youth planning to start a new NGO? 

The number of NGOs in Nepal is growing. I meet many youngsters studying social work as their degree programs, inspired by the global fame and acclamation earned by handful NGO leaders. But they do not understand the hardship that went in to reach that point.  Success in an NGO requires the ability to not quit. We need to teach them to be patient. Rather than starting a new NGO, reviving existing NGOs with young talent and their new ideas is always better. I advise youngsters to join volunteering programs. Not only does volunteering boost self-confidence and happiness, they learn what goes in even to bring about the smallest change.

On World Autism Day, what would be your message to our readers?

Be aware that none of us are perfect. We all have strengths and weaknesses.  So does each person with Autism. They have the capacity for growth and development. All they need is a right to services that enhance well-being and opportunities to learn. And everybody deserves to be heard and seen.

Autism spectrum disorders

Key Facts

• 1 in 160 children has an autism spectrum disorder (ASD).
• ASDs begin in childhood and tend to persist into adolescence and adulthood.
• While some people with ASD can live independently, others have severe disabilities and require life-long care and support.
• Evidence-based psychosocial interventions, such as behavioral treatment and parent skills training programs, can reduce difficulties in communication and social behavior, with a positive impact on wellbeing and quality of life for persons with ASD and their caregivers.
• Interventions for people with ASD need to be accompanied by broader actions for making physical, social and attitudinal environments more accessible, inclusive and supportive.
• Worldwide, people with ASD are often subject to stigma, discrimination, and human rights violations. Globally, access to services and support for people with ASD is inadequate.