Beyond the Stigma: The Struggle and Resilience of Families Raising Children with Autism in Nepal

Hetauda. When he was born, everyone carried him in their arms and showered him with love, calling him a beautiful baby like Krishna... but today, as he turns nine, no one asks about his well-being. Relatives and neighbors who once congratulated the parents on having a healthy and beautiful son now only remember his 'mischief' when they visit, yet they are not ready to accept him as a member of society.

This pain of Aarambha Thapaliya from Hetauda is not just the story of one family; it is a representative story of many children with autism forgotten by society. When Aarambha was born, the family was filled with joy. As the first child, and a healthy and beautiful-looking boy, all hopes and dreams were tied to him. But as time passed, the situation changed. As he grew older, differences in his behavior began to appear—not responding when called, getting lost in his own world, and not mingling with others. "We stopped taking him anywhere because people said he was mischievous, and even relatives started keeping their distance," says Aarambha's mother, Asmita Kalika.

Having raised her three sisters' children, Asmita had general knowledge about child development. Therefore, when she did not see age-appropriate behavior in her own child, her heart felt something was different. But her soul refused to accept that truth. The thought that "some children speak late" provided comfort for a while. But when the child could not speak even after 18 months, could not express what he wanted, and found it difficult to respond, she sought medical help. The conclusion after the examination was autism. With that word, Asmita's world suddenly collapsed.

"It took five years to accept," she recalls, "First child, big dreams... how to accept it?" For her, who had dreamed of a happy family after marriage, the birth of her son was the greatest joy of her life. But within two years, that joy turned into worry and confusion. She ran from hospitals in Kathmandu to various specialists.

"I was not ready to accept it, so I ran to many hospitals," she said. But when the same answer came from everywhere, she was forced to accept the reality. After that, the direction of her life changed. She started studying autism deeply. She read books, watched videos, and took training. She kept learning how to help her child.

As the youngest of three sisters, she was already aware of the changes that come with age, having seen her sisters' six children grow up. However, it was difficult for her to accept this from a mother's perspective. The hardest part of her difficult journey was dealing with society. "Wherever I went, questions were asked about the child, no one tried to understand," she says, "That's why I didn't feel like meeting people."

During the COVID-19 pandemic, she returned to Hetauda. At that time, she met two other mothers who were in the same pain as her. Shared pain connected them. According to her, the three of them started classes for children with autism from a small room in their own house. Initially, there were no resources and training was limited, but there was determination in their hearts.

That small effort has now developed into the 'Center for Autism Makwanpur'. Currently, 24 children are learning here regularly. Four children have improved and have reached mainstream schools.

Asmita's dream is no longer limited to her own child. "Autism is not a disease, it is a special condition. If they get the right support, these children can also show their potential," she says. She is currently studying more about autism so that more parents can be helped in the future.

Umakumari Paudel and Nisla Shrestha from Hetauda have similar experiences. Initially, they too could not accept the condition of their children. Fear of society, lack of information, and worry about the future had left them even more confused. But after training and study, they began to understand autism.

Children with autism show symptoms such as not making eye contact, preferring to stay alone, being unable to express themselves through speech, and having difficulty mingling with others. They require special care, speech therapy, occupational therapy, behavioral training, and continuous psychosocial support. According to doctors, changes in 'genes', problems in the development of the nervous system, some effects during pregnancy, or complications at birth can lead to autism.

According to the National Census-2078, 4,886 people have autism in Nepal. There are 1,253 people in Bagmati Province alone. According to the latest statistics, one in every 36 children is starting to show signs of autism.

But the bigger problem than the statistics is the attitude of society. Since children with autism look normal from the outside, their pain is not visible. Consequently, they are ignored, and families are left isolated. Asmita says, "If society accepts them, half of our pain will be reduced just like that."

Today, many children like Aarambha are getting lost in the crowd of society. Neither their voices are heard, nor their dreams are seen. But those children also have dreams. To be loved, understood, and accepted. Children with autism are not to be forgotten, but to be understood. They are different, but not weak. If we learn to accept them, those children who are forgotten today can become the bright stars of society tomorrow.