Ganga Neupane of Sanepa, Lalitpur has a 16-year-old son. Neupane has faced many ups and downs in the 16 years since her son was born. When her son showed different behavior from other children within 8 months of his birth, he was diagnosed with autism. The diagnosis of autism changed not only her but also the entire family's daily life.

Her son, who was growing up in special care, is now away from school. Ganga said that the school had recently refused to admit her son, who was studying in a special school in Kathmandu. She said, "Last year, he went to his maternal uncle's house, and when he returned, the school refused to admit him, and sent him back saying there were no seats."

After that school did not admit him, Ganga started looking for another school. Even though she found a school in Sanepa, she could not send her son to school because the fees were too expensive. She said, ‘It was difficult to take him to a distant school, so we looked for a nearby one.’ However, the fees were expensive, so we did not admit him.’ Ganga said that the school charged a monthly fee of Rs 45,000. Ganga, who runs a stationery shop, said that it was very difficult to run a family and educate her child. She said that since autistic children need therapy, education and treatment cost a lot. She said that the family is now taking care of her son. Ganga’s son is now able to walk after physiotherapy. She said that the pain and expense of therapy were also unimaginable. She said, ‘I used to live in Anamnagar, from there I had to go to Dhapasi for therapy, we used to take two vehicles to reach there. It didn’t cost much money, but it was difficult to go there.’ Ganga expressed her grief that her son is now deprived of both education and therapy. She said, ‘If only the state could provide the money and time, my son would not be deprived of education.’

She says that if the state arranges special teachers for such children in every school, all children will be able to go to school. She said, ‘Such children are struggling on their own, and on top of that, they are humiliated all the time. Even when they are riding in a car, they behave as if it is okay.’

Sanu Khadka of Dhangadhi has a 9-year-old son with autism. She came to know that her child has autism only 3 years ago. Initially, she assumed that it was ‘Down syndrome.’ However, after taking training on autism in Dhangadhi 3 years ago, she came to know that her son had autism.

She started investigating further when her son’s behavior was different from that of children with ‘Down syndrome.’ ‘They would not come back after going somewhere, they would not listen when spoken to, and sometimes they would scream a lot. It seemed different, but I didn’t know what was going on,’ she said. 

She came to Kathmandu as there were no facilities in Dhangadhi for autism diagnosis.  She said, ‘I didn’t know anything about autism, I started understanding the child’s behavior only after taking training.  I had to go to Kathmandu to find out if it was autism or not, and it cost a lot at that time. ’

After autism was diagnosed, she started getting therapy.  She had to get regular therapy and it cost 5 to 600 rupees per hour, so she couldn’t give it regularly.  She said, ‘It costs 500 rupees per hour, and I have to take her several times a month.  I am paying 7,000 rupees per month for school fees.  On top of that, there is a lot of expense for therapy and materials.  

Confusion in identifying the problem

Another parent, Suvigya Sharma, also found out that her 10-year-old son had autism at the age of 2. However, she said that initially it was difficult to understand what autism was. Even though the child had a problem, she did not know what was wrong. Initially, he would be late to talk, would not play with others, would sit in his own way and enjoy himself, and later she found out that he had autism. After finding out that her son had autism, she and her family started taking training on autism.

They participated in various programs and counseling to learn how to deal with the child, how to teach him, and how to involve him in daily activities. During the training, she said that she reached ‘Action for Autism’ in India. There, she took various training and counseling. She said, ‘It costs a lot to diagnose the child’s problem and then to get training on your own.’

After training and continuous practice, the child has improved somewhat. However, the financial burden is increasing. The materials needed by the child are expensive, she said. She said, ‘He loves painting, a brush costs 800 rupees in India, but here you have to pay up to 2300 rupees.’

According to her, materials used for children with autism are not readily available, and even if they are available, they are very expensive. She said, ‘Play materials, sensory tools, books, learning materials are all expensive. It costs a lot to meet the needs of the child.’ According to Sharma, who is also an autism activist, most parents are under financial and mental pressure. She says that the expenses on school fees, therapy, transportation and materials are causing problems for many families.

Parental protection RP identified her son with autism at 18 months. She said that her son was diagnosed with autism when he was 2 years old after he spoke slowly and could not look straight. She said that after that, she started giving him regular therapy and training. She has taken various trainings to take care of the child. After the parenting training, she started taking care of the child herself.

She says that identifying, treating and treating a child's autism takes time and money. She said that she had to spend up to 18 thousand for one training. She said, 'You have to go to many places to see if this therapy will improve or if that treatment will be beneficial. This costs the parents a lot of money and time.' She said that she received special training and support there when she lived in Jordan for 2 years for work.

She said that autistic children demand a lot of things and cannot control their food, so they spend more than others. She said, ‘I haven’t calculated how much it costs, but they spend a lot on everything from food, toys to education, and they also make a lot of unnecessary demands.’