Name: Hem Sagar Baral
Email: autismnepal@gmail.com

Please tell a little about yourself and your role with autism in Nepal.

My name is Hem Sagar Baral with a family of 2 young daughters, 9 and 7. My background is nature conservation and I did my doctorate on ecology of Nepal’s grassland birds. When we learnt that our older daughter Sylvia is autistic we tried to get help within the country. There was very little help and a lot of people including medical doctors did not know much about autism.

We were worried about the future of our daughter and myself and my wife Kalpana used to discuss hours how to get away with this problem. We realized that there is no getting away but only solution will be to fight against it. We set up a charity and floated news on autism in popular national dailies. More parents came and joined us together with some dedicated and young technical people who wanted to help us. My wife Kalpana Ghimire was the founder President but now the council has been revised and I am the President of the organization. Positions are honorary but we have small income from a small travel agency that I run with other friends.

I am active coordinating and fundraising for the charity AutismCare Nepal.

What is the prevalence of autism in Nepal (if known)?

We do not know to be sure. Current educated guess is between 10000 to 50000.

Within the general culture of Nepal, how aware are people of autism? How accepting are they of autism?
People are not aware about autism at all in our country. Even the technical people like medical doctors have very little knowledge. Most societies in our country are not willing to accept children with autism. They prefer to stay away or majority wish not to be involved.

What are the largest struggles for people with autism in Nepal? Is there a story you know personally that demonstrates this struggle?

Lack of expertise who can teach children and mother about autism and how to improve quality of life autistic children live are major challenges. Finance is a constrain to do more coordinated activities.

I think biggest struggle we have had was first to diagnose our child. Lack of expertise in the country resulted different doctors diagnosing child suffering from different problems. Once diagnosed by doctor and by us, then second biggest hurdle was getting support from people. We have now small office in Kathmandu, capital of Nepal but to rent that we had lot of difficulties. Land lords were not willing to rent their house for use of children like ours!

What types of training and assistance are needed in your country to improve autism awareness and services?

We need to develop expertise on giving therapies, special educators and child caretakers etc. We also need assistance in terms of materials for educating children and also for awareness. Finance is a limiting factor for our activities.