Living with autism in Nepal - A story of children with autism and their parents

When two-and-a-half-year old Apurva was diagnosed with autism a few years ago, her family was in disbelief. Specially her mother, a teacher by profession, who did not see the initial “signs and symptoms” of autism in her first child. As a new mother of a healthy baby who had just started speaking, learning nursery rhymes and walking, it was only when relatives pointed out the anomalies in her behavior that Binita Bhandari decided to seek medical attention.
“I went to a famous hospital in Kathmandu and the doctor there diagnosed Apurva with autism. But that was all he could tell me about it. He asked me to look it up on the internet for more information,” she says. The distraught mother then started trawling the internet. But with no personal experience in raising a child with special needs, she did not understand most of what she found. “That is when I came across Autism Care Nepal Society (ACNS). I took my daughter there and she was properly diagnosed. Then I started parent-child training and therapies for my daughter, which helped me enroll her in a mainstream school.”
Now aged 8 and in Grade II, Apurva is a brilliant student. Science is her favorite subject. Blessed with exceptional memory and uncanny ability to concentrate, Apurva is one of the few children with autism in Nepal who have been able to pursue their studies in a mainstream school. “Timely diagnosis and early intervention helped a lot,” says Bhandari.

“For a parent, acceptance is the most difficult thing. To realize and accept the fact that your child will have this disability lifelong is the first thing a parent needs to do,” says Kalpana Ghimire Baral, founder of ACNS, the only organization in Nepal working for children with Autism Spectrum Disorder (ASD). With her husband Dr Hem Sagar Baral, she started the ACNS in 2008 when most doctors, parents and other medical professionals in Nepal were still unaware about the disorder. Now the society has more than 400 families from all over Nepal in its network.
“My daughter was diagnosed with autism in 2006. At the time, we had no idea of what this disorder meant and how to take care of someone with autism,” Baral says. “We found a few parents with the same problem and started a group to help out each other.” This coming together eventually culminated in the formation of the ACNS, which is a parent-run non-profit organization. It helps children with autism as well as their parents in assessment and diagnosis, counselling, parent and child training, therapies and catering to the needs of children with autism.
Autism, one of the most common types of Pervasive Developmental Disorders, is a neurodevelopmental disability characterized by challenges with social skills, repetitive behaviors, problematic speech and nonverbal communication, as well as by unique strengths and differences. The severity of autism differs from person to person. Its exact causes are still unknown but mainly suspect a combination of genetic and environmental factors.
Although this disorder has been recognized in the more developed countries for decades, the study, assessment and diagnosis of autism in a relatively new thing in Nepal. In fact, the Ministry of Health used to recognize autism as a ‘mental disability’ until a few years ago. But the “Disability Bill 2072” re-categorized it as a disability on its own and not as a metal disability.
“The problem for children with autism starts from their inability to perform Activities of Daily Living (ADL). At the society, we start by trying to make students capable of performing ADL to make them self-reliant,” says Surendra Bajracharya, Chief Administrator/Project Manager of the ACNS. “The next step would be to teach them how to socialize with other children.”
The society also works with parents to create a conducive environment for children with autism. Parents are trained on the steps to take after diagnosis: understanding autism, accepting their children will need help all their lives and creating a progressive and structural environment for their children. “We also do parent-child pairing activities, which helps them bond better despite their many struggles,” says Bajracharya. “These training sessions for parents also work as morale boosters.”
The data on people with autism is unavailable in Nepal, mainly because of the lack of diagnosis and awareness. Based on global prevalence data, an average of one percent of the total population of any country has autism. On that basis, the society estimates that there are around 300,000 Person with Autism (PWAs) in Nepal, out of which 60,000-90,000 are severely affected.
The problem right now is three-fold: lack of awareness, poor diagnosis and treatment mechanisms and a shortage of qualified medical manpower. Nepal government is has also begun to realize the importance of urgently dealing with autism. The Ministry of Education, for instance, has included teaching of PWAs in its “Inclusive Education Policy 2073.” Similarly, the Ministry of Health is also including autism in its National Health Strategy Plan (2073-2082).
Autism is not something that can be treated completely by medicine and therapy. It requires time, patience, perseverance and empathy. “Every small achievement for us is substantial in helping children with autism,” Bajracharya says. “There have been instances where our children have been integrated into mainstream educational institutions, which is an enormous positive for us.”
For parents of children with autism, any support from the government or the private sector is god-sent. “In the beginning, we wanted to move abroad to get our child treated. There were no resources available here. But then we realized that the problem is lifelong and we had to do the best to make her life comfortable,” says Baral. “Now we have a strong community to help each other out and living with autism in Nepal is not as difficult as it used to be.”

Photos by : Pritam Chhetri