Poornakala Dhakal, a resident of ward 9 of Lekbesi Municipality in Surkhet, spends her entire day caring for her seven-year-old daughter Prem Kumari, who has autism and poor vision. Prem Kumari often talks to herself and wanders wherever she wishes.

“I also cannot see properly and am unable to work effectively. I am very much worried as my daughter has autism and on top of that my family members mistreat me for giving birth to a child with autism,” said Dhakal.

Prem Kumari was diagnosed with autism, which covers a broad spectrum of neurological disorders that affect development, when she was two-and-half years old. “She was diagnosed with autism as we took her to Kathmandu for a check up. We placed her at Autism Care Nepal Society in Lalitpur for six months. While there was some improvement, we had to return to Surkhet due to the high cost of living in the Capital,” she said.

Dhakal is anxious about her daughter’s future. “Her condition seems to be getting worse day by day. My husband is also intellectually impaired. How can I raise my daughter and ensure a better future for her?” she lamented.

After returning home from Kathmandu she kept her daughter at Autism Care Nepal Society in Birendranagar for a few days, but had to commute daily to drop her off and pick her up. “Then I decided to bring her home as I could not afford the daily travel expenses to and from Birendranagar. Providing her education is a far cry for poor people like us. We cannot barely manage her treatment,” Dhakal said.

Many parents of autistic children in Karnali Province face similar struggles with care and education. They complain that government authorities are indifferent to identifying children with autism and providing them education. So both the guardians and autistic children are in a difficult situation.

In 2018, Tek Bahadur Khadka of ward 5 of Chingad Rural Municipality in Surkhet learnt that his five-year-old son had autism. Hoping that his son would be better, he took his son to Lalitpur-based Autism Care Nepal Society. His therapy continued for six months. However, financial constraints forced him to return home. Khadka later took a ‘parent-child’ training in Birendranagar for two months, but his now 11-year-old son’s condition has not improved.

“My financial situation is very tight. I cannot afford the costly therapies for my child. Many poor parents like me would benefit greatly if the government set up a therapy centre for autistic children in Birendranagar,” said Khadka.

Autism is a serious health issue in Nepal. It is estimated that there are around 300,000 autistic children in the country. Despite the availability of diverse educational curricula and educational boards, autistic children face challenges in pursuing education in both public and private schools.

Former member of Karnali province assembly Sushil Thapa and his wife Sushila Shahi established Autism Care Nepal Society in Birendranagar in 2018 for the rehabilitation of autistic children. Autism Care Nepal Society in Lalitpur also supported the establishment of the society branch in Birendranagar.

Autism Care Nepal Society in Birendranagar has a problem now due to lack of budget.

“We have been running the society somehow. We are struggling to provide adequate services. A total of Rs4.6 million has been provided to the society by the government authorities and non-governmental organisations as of now. We are unable to manage various educational and sport materials, appoint skilled human resources and carry out various activities due to the lack of budget,” said Thapa. Thapa said that his own child has autism. According to Thapa, autistic children in Karnali are deprived of treatment and are forced to travel to Kathmandu.

The provincial government does not have actual data on autistic children in Karnali. According to the Autism Care Nepal Society in Birendranagar, there are around 3,500 autistic children in Karnali.

Sumitra Shahi, who is working at Autism Care Nepal Society in Birendranagar, is the only special educator in Karnali. “We currently have five children at our centre. Many guardians do not know that their children have autism, and instead take them to shamans rather than seeking proper care,” said Shahi.

Individuals and organisations working for autistic children in Karnali criticise the government for not launching targeted programmes and funding for these children. They are calling for serious attention to the issue of adequate budget allocation.

Brish Bahadur Shahi, chief at the health division of the Social Development Ministry, admits that the provincial government does not have any programmes specifically for autistic children.