Kastup’s mother Rachana, 43, a nurse by profession, found her second child was different when Kastup didn’t utter “ama” and “buba” while other children at his age did. She took him to a hospital, but doctors couldn’t diagnose it was autism. The doctors Rachana visited said Kastup’s problem was minor and it was a speech delay.

She took him to different schools. But a few days after enrollment, the schools would refuse to take him knowing he was different. “At first, they admitted him, but when they knew he was somewhat different from others, they asked us to take him out of the school,” she said. “Those were the most painful situations in my life,” she said.

Rachana’s story resembles those of many parents whose children are autistic. They have no choice as schools don’t accept autistic children. Since autism is a neurological disorder and is untreatable, parents like Rachana want the government to listen to their pleas and create a learning environment for their children so they could live independently.

There is no official data on how many children in Nepal are autistic. Autism Care Nepal, an organisation working for the rights of autistic children and run by their parents, predicts there are around 300,000 autistic people living in Nepal.

Dr Sunita Maleku Amatya, chairman at Autism Care Nepal, stresses the need for special education for these children. Sunita, whose eight-year-old Kreet Amatya is autistic, is an anaesthesiologist.

“After the diagnosis, the most challenging part for autistic parents is how to educate their children,” said Sunita. “The government should ensure the right to education for these children.”

She suggested the government launch special education programmes for autistic children. “Nepal plans to achieve the goal of education to all by 2015, and these autistic children shouldn’t be left out,” she said. “Education is also a basic right for them.”

Educating autistic children would require special educational plans. It needs a multidisciplinary team comprising art therapists, music therapists, occupational therapists, and other trained teachers.

Kastup’s father KP Lamsal, 47, said: “There should be special schools and special teachers who can look after our children. Exams should be conducted based on their qualities.” Each student should have an individualised education plan, and only a joint effort from teachers and parents can help autistic children learn and excel.

Kedar Gandhari, 33, a senior clinical musical therapist for autistic children, said therapies would help autistic children socialise. “I have seen autistic children learn a lot from the therapies,” he said, adding children with mild autism will learn fast, while those with severe autism will take more time, so each autistic child has different learning speed.

Autism Care Nepal, which also runs a day-care centre that looks after autistic children, is also taking initiatives to raise awareness in the policy level so the government will not categorise autism as an intellectual disability.

“The first thing we need to understand is people with autism can be exceptionally talented, so the government shouldn’t categories autism as intellectual disability. It should be categorised separately,” Sunita said. Although the level of awareness about autism is increasing in the Capital of late, things were very different 10 years back. It was Dr Arun Kunwar, a child psychiatry, who diagnosed Kastup was autistic. He was already seven when he was diagnosed.

Parents of autistic children are bound to face new challenge each step of life. “My concern now is who will look after our children when we die,” Rachana, looking at her son Kastup, said. “If there is an autism care centre that could look after my son when he grows up, I could die peacefully.”