Government's neglect of those with autism, parents in disarray

Purnakala expressed her pain, "I also have low vision". Can't do much work . On the one hand, the daughter has autism. On the other hand, the members of the house complain about having a daughter with a disability like her.

There is no one else in the house to take care of Purnakala's daughter. What will be the condition of the daughter after leaving alone? Because of this, she spends all her time taking care of her daughter.

'When my daughter was two and a half years old, I found out that she had autism after taking her to Kathmandu for a check-up. After 6 months at Autism Care Nepal Society in Lalitpur, there was some improvement. I came back to Surkhet after staying in Kathmandu and finding it difficult to afford the expenses,' she says, 'I am not able to provide the environment according to my daughter's health condition . That's why the daughter's condition is deteriorating day by day. My husband is also mentally retarded.'

After returning from Kathmandu, she placed her daughter in the Autism Care Nepal Society in Birendranagar. But later she could not go there. Dhakal says that she kept her daughter at home as she did not have the money to pay the car fare from Chaurase to Birendranagar.

"It hurts my heart to see other children going to school," Purnakala said, "I haven't been able to get my daughter treated." For us poor people, education has become a very distant thing. Parents are in trouble because the government does not pay attention to the identification and development of children with autism. In Karnali, families whose economic conditions are weak are not able to take care of their children with autism.

Recently, even though parents have found out that their children have autism, their access to care has not increased. So both parents and children are in trouble . Tek Bahadur Khadka of Chingad rural municipality-5 Awalching of Surkhet found out that his son has autism on 25th of January 2075.

After that, he took his son to Autism Care Nepal Society in Lalitpur and gave him therapy for 6 months. Due to his poor financial condition, he also stayed there and returned home after not being able to treat his son. Later returned to Birendranagar and took parent child training for 2 months . But the condition of his son, who is 11 years old, has not improved.

'My financial condition is very weak . I can't even pay the expensive fees for my son's therapy,' he said, 'I am forced to watch my son's condition deteriorate . If the government had arranged for easy therapy in Surkhet, it would have been easy for parents like me.'

He says that parents with autism suffer a lot when it is difficult for parents with poor financial conditions to take care of their normal children.

There is an Autism Care Nepal Society for the rehabilitation of children with autism in Birendranagar. The center, which was opened in 2018 by Sushil Thapa and his wife Sushila Shahye, a former member of the Karnali State Assembly, is also facing problems in its operation due to lack of budget. Knowing that there are many other children with autism like their son in Karnali, the Thapa couple decided to open a care center in Surkhet.

Autism Care Society Lalitpur also provided some support for this. Although they managed to open the office, there was a problem in raising the budget and manpower. Manager Thapa says, "The office is being operated around the clock". Excellent service is not over. So far, Autism Care has received a budget of only 46 lakh rupees from the government and non-government agencies.

Thapa says that due to the low budget, it is difficult to keep the various educational and sports materials needed by the children in the care society, to have skilled manpower and to conduct activities. There is no treatment facility for children with autism in Karnali province. For this, the locals have to come to Kathmandu.

Sumitra Shahi working at Autism Care Nepal Society in Birendranagar is the only special educator in Karnali. According to him, there is a problem in explaining autism to parents. Care Society established to take care of children with autism is one of Karnali and Sudurpaschim Province. 35 parents have taken parent child training from this center.

'We have 5 children in our center now . Not all parents agree to give time . Some people say that there is a lot of work at home, others have to look after the children. No one is afraid of the financial situation to live in Birendranagar," she said. "Some parents send them to other schools. Some even show Dhamizhakri at home due to lack of awareness.'

She said that there is an illusion that my child will be fine as soon as the parents receive training. She says, 'The government doesn't give our office a budget, because of the lack of resources, the management is not able to be good He says that he can get the service from Birendranagar.

There is no single data of children with autism in Karnali. Autism Care Society Surkhet claims that more than 3500 children are suffering from autism in the province. Vishnu Sharma, President of the Karnali Province of the Disabled Federation, said that many parents in Karnali do not know about autism and that it is necessary to create awareness about it. He said that the government does not have any program or action plan for autism in Karnali, nor any state or local government.

'If the government does not take autism seriously, it cannot be said that it will not cause a health crisis,' he said Senior Public Health Administrator Brish Bahadur Shahi, Head of the Health Service Division, said that the state government could not bring any program because it was aimed at autism. "There is a budget of 500,000,000 for the program related to the rehabilitation of the disabled from the federal government," he said. There is a plan to include them in this program as well. As the procedures are being prepared, then the program will be conducted.'