SURKHET, NEPAL — Purnakala Dhakal spends her days feeling constantly overwhelmed. Her 6-year-old daughter, Prem Kumari, has autism, and Dhakal is often afraid to leave her unsupervised. There is no one to help take care of her child; her husband also has a developmental disorder. “My family blames me for giving birth to a daughter who is disabled,” she says. “No one loves or plays with her.”
Knowledge of autism is limited in Nepal, although advocates estimate that as many as 300,000 people may be living with it. To receive a diagnosis, one must travel to the capital. This is what Dhakal did when her daughter was around 2 years old. This is also what Sushila Shahi Thapa did when she sensed her son Alex wasn’t hitting the usual milestones of early childhood development. A resident of Dailekh district, which neighbors Surkhet, Thapa had no knowledge of autism spectrum disorder, despite working as a nurse at a local hospital.
“The behavior my son displayed seemed unnatural,” she says. “When I shared my concern with family members, they said not to worry because some children are slow to start speaking.”
Alex was 18 months old when he received a diagnosis in Kathmandu. Thapa then sought treatment for him at the AutismCare Nepal Society, a nongovernmental organization based in Lalitpur in the Kathmandu valley. Founded in 2008, the organization is run by parents of children with autism. Through the society, Thapa and her husband also received training on how best to take care of a child with special needs; when they returned home, Thapa trained other family members, too.
“Somehow, I managed to provide developmental opportunities for my son,” she says. Alex, now 7, attends a regular school. “But in Karnali, some parents are forced to tie up their autistic child at home to go to work.”
In 2018, realizing that other parents faced similar challenges, the Thapas established a care center for children with autism — calling it the Autism Care Nepal Society, though it is not an official branch — in Birendranagar, the capital of Karnali province. The Kathmandu organization provided support, but staying afloat has remained a challenge.
“After opening the office, we had difficulty securing money and manpower,” says Thapa’s husband, Sushil Thapa, who serves as the organization’s operations manager. “We have managed to operate but have not been able to provide excellent service.” He estimates that 35,000 children with autism live in the province. According to the 2021 census, on the other hand, just under 5,000 people with autism live in Karnali, a figure advocates believe is a gross undercount.
Autism is one of 10 classified disabilities in Nepal, yet government support is hard to come by. Nepal’s disability allowance, which started in 1996, provides cash transfers to people with disabilities — but this is often far from sufficient. Dhakal, for instance, does not work and subsists on the monthly disability stipend of 4,200 Nepali rupees (32 United States dollars) provided by the state. No other assistance — in the form of dedicated medical and social services — is available.
Anita Gyawali, head of the women and children’s division at Karnali’s social development ministry, says the government is taking the issue seriously. The first order of business is identifying the scale of the need. “Budget preparation for the coming financial year is ongoing,” she says, adding that “children with autism will be included in the next budget.” In the budget released since, the state has allocated funds for educational services for children with disabilities — some of which may be directed toward children with autism.
Chandani Kathayat, GPJ Nepal
“We have lobbied the government, but it has not been taken seriously,” says Bishnu Prasad Sharma, president of the disability association in Karnali. “There has to be a proper budget to provide services to Karnali residents through the AutismCare Society in Surkhet.”
The center has received 5.1 million rupees (38,885 dollars) from the state government and from a nongovernmental group in the past five years, Sushil Thapa says, which is nowhere near enough to sustain it. The center has five employees — a caretaker, an administrator, two teachers and a special educator — and has provided training to 35 sets of parents and children from Surkhet and neighboring districts.
Sumitra Shahi, the only special-needs educator in all of Karnali province, provides training at the center for parents, caretakers and teachers working with children who have autism. Shahi is Sushila Shahi Thapa’s sister: Unable to find a local special educator, the Thapas sent Shahi to Kathmandu to receive specialized training.
“Due to a lack of budget and manpower, we have not been able to cater to many children at once,” she says. Providing training to parents is also challenging. “Not all parents are willing to give time. Some say they have a lot of work at home or other children to take care of. Others say they cannot afford to live in Birendranagar.”
Many parents also experience a great deal of guilt. Sometimes they feel their actions have caused their children to develop autism. When her son, Ridam, was 4 years old, Dipa Gurung, in Birendranagar, would sometimes leave him at home while she went to the forest to gather grass and firewood, locking him in a room to keep him safe, with a cellphone to distract him. Now she worries that increased cellphone usage triggered a developmental disorder in her son, who is now 7. Meanwhile, in Awalching village in Surkhet district, Tek Bahadur Khadka fears he waited too long to seek a diagnosis.
“My son is already 10 years old, and it is too late,” he says. “My economic state is weak; I cannot afford expensive therapy for my son. I wish the government would provide affordable therapy in Surkhet district.”
Chandani Kathayat, GPJ Nepal
Even as awareness of autism is slowly increasing, access to care is not expanding in tandem. Surendra Bajracharya, chief administrative and program officer at the AutismCare Nepal Society in Lalitpur, says the incidence of autism is increasing and that census figures do not adequately reflect its prevalence. Bajracharya, also a physiotherapist and public health expert, says three years ago about 10 or 12 children would enroll at the facility each month; now the center sees that number daily. But treatment remains expensive and often inaccessible, given the lack of trained therapists. “From identification to therapy, a child with autism needs different specialists,” he says, adding that parents must pay exorbitant fees for proper care. In fact, unable to find existing specialists, the organization facilitated autism training for two psychologists. Both now work at a children’s hospital in Kathmandu.
After Dhakal’s daughter was diagnosed in Kathmandu, she stayed in the capital to receive parent-child training. “Her condition improved after she received treatment for six months at the AutismCare Nepal Society,” Dhakal says of her daughter. “But after it became difficult to manage expenses, I returned to Surkhet. I have not been able to create the environment her condition necessitates.”
Upon her return, Dhakal took her daughter for treatment at the care center in Birendranagar, about 30 kilometers (19 miles) away from her home in Chaurasey. The dirt route to Birendranagar is often inhospitable and is entirely inaccessible during the rainy season, and she discontinued treatment after 11 days because she was unable to manage the commute.
“I spend my entire day looking after my daughter. Even if I want to go to work somewhere, how do I leave her in this condition?” she says. “My heart weeps when I see other children going to school. I feel that there is no government for people like me.”
She has now sold her land in Chaurasey and relocated to Birendranagar, pinning her hopes on the center there to provide a stable and caring environment for her daughter. Given its struggles to stay afloat without adequate support, however, it is unclear how long this beacon for struggling parents in Karnali will last.