Children with autism face a long, hard road to acceptanceAutistic children get diagnosed earlier and have access to a range of therapies, but employment opportunities remain limited.
At five in the evening, Sophie exits her classroom and waits quietly for her mother to pick her up. Sophie doesn’t talk much, only answering when someone asks her a question. She doesn’t like making eye-contact and often, her speech isn’t very clear. At 24, she is preparing for her twelfth-grade board exams.
Sophie is one of the 25 autistic children receiving therapy and taking special lessons at the Nepal Academy of Psychology. After graduating from the Indian Board of School Education, equivalent to Nepal’s Secondary Education Examination (SEE), she enrolled for private lessons—psychological counselling and grade twelve classes—at NAP to further her studies. Although Sophie—her parents did not want to reveal her last name due to the social stigma attached to autism—attended a normal school until the tenth grade, the school advised her parents to drop out before she could sit for the SEE examinations with her peers.
“We all knew that Sophie wouldn’t be able to clear her SEE examination in one go. So the school advised her to drop out as they didn't want her results to affect their overall success rate,” said Sophie’s mother, who didn’t wish to be identified. But she has no complaints, as her daughter was at least able to experience a ‘normal’ school life, she said.
Sophie was diagnosed with Autism Spectrum Disorder (ASD) when she was 15 years old and studying in fifth grade. Autism covers a broad spectrum of neurological disorders that affect development. People with autism show repetitive and restrictive behaviour, and tend to have a difficult time communicating with others and understanding social cues. The kinds of symptoms and their severity can vary, which is why it is classified as a spectrum.
“I didn’t even know that something like autism existed before Sophie was diagnosed. I just thought she was a bit slower than others,” said Sophie's mother.
Around 300,000 people in Nepal are currently living with autism, according to an information booklet produced by Autism Care Nepal Society and the Ministry of Education. According to Centers for Disease Control and Prevention (CDC), a public health institute in the US, one in 68 children are diagnosed with Autism Spectrum Disorder worldwide.
Information on autism and autism care are very meagre in Nepal, according to Umanga Jung Parakram Shah, director and psychotherapist at NAP. This can hinder diagnosis, and also acceptance of autistic children in schools.
“Not all schools are welcoming to autistic children. We had a case when a reputed school that claims to have an inclusive education system told the parents of a seven-year-old to first teach him how to sit and speak properly before bringing him for admission,” said Shah. “It was very insensitive.”
Even when the schools offer admissions, they are not sensitive towards the children’s needs, he said.
Sohan was kicked out of school because he wasn’t performing well in his classes and teachers complained that he was a disturbance. The 19-year-old was studying in the second grade when he was asked to leave. He is currently taking vocational classes at the Special Education and Rehabilitation Centre for Disabled Children (SERC), a centre that provides therapy, rehabilitation, schooling and vocational classes to disabled children.
“The school claims to be autism inclusive, but it is evident from their assessment of Sohan that he wasn't taught properly. His academic assessment was lower than that of a kindergarten student,” said Kalpana Basnet, a physiotherapist and founder of SERC.
Because of such situations, parents of autistic children have no choice but to settle on informal schooling. Other schools not only lack trained and skilled human resource but also don't have infrastructure and facilities to accommodate autistic children, said Basnet.
But according to Shah, who has been providing informal classes at NAP for the past 19 years, it is possible for children with varying levels of ASD to attend general schools—with a few specific considerations. Since autism is a spectrum there are children diagnosed with ASD who are able to understand the syllabus and are fairly good learners, but are unsocial and uncommunicative. There are also autistic children who have severe difficulties learning and interacting with others.
“They often have a hard time grasping abstract concepts, so the teaching technique has to be a bit different,” said Shah.
However, the main problem lies with the ‘one-size-fits-all’ education system, which fails to accommodate children with different needs. All students are required to give entrance exams and interviews, which can be difficult for children with autism.
To tackle these difficulties, organisations like the Nepal Academy of Psychology, Autism Care Nepal Society, and special schools like SERC provide them with informal schooling and vocational education.
“We categorise students according to their IQs and the autism spectrum. Then we design their lesson plans accordingly. Children with low IQs have a difficult time grasping the regular syllabus so we focus more on teaching what they are interested in,” said Basnet.
Seventeen-year-old Prabesh is one of her students, who has been taking baking classes at SERC.
“He is a fast learner. If he had been admitted to a special school earlier, he would have definitely thrived,” said Basnet.
Prabesh, who has mild autism, can be difficult to deal with sometimes. He was studying in the ninth grade in a regular school before his parents were asked to move him to a facility that could accommodate his needs. His parents then enrolled him at SERC, where a variety of classes is available—including baking, farming, shopkeeping, housekeeping, cooking, painting, and animal rearing. SERC has also been collaborating with Shree Udaya Kharka Higher Secondary School in Chapagaun and Birendra Smriti Sikshya Sadan in Ekantakuna, where three of their high-functioning autistic children currently study.
“If they have the capability to study, we help teach them, either here at SERC or at the schools we collaborate with. If not, we enrol them on our vocational programme,” said Basnet.
For autistic children, lessons and therapy go hand in hand. Speech therapy, music therapy, physiotherapy, and occupational therapy are provided according to their needs. Since autism is a spectrum disorder, there isn’t one kind of therapy that applies to all.
“Even though most people have a general idea about what autism is, they lack information. Government bodies, policymakers, teachers, parents, everyone should be familiar with it so that we can create an autism-friendly environment for these children who desperately need it,” said Surendra Bajracharya, chief administrator and project manager at Autism Care Nepal Society.
Along with providing vocational training and therapy, Autism Care provides training to the parents of autistic children, government bodies, and public and private school teachers.
The government also facilitates resource classes to promote inclusive education, but Bajracharya believes these classes aren’t very autism-friendly.
“They lack trained teachers who have in-depth knowledge of autism and the classes haven’t been upgraded. All the students with different disabilities are kept in the same class,” said Bajracharya “We’ve asked them to modify the curriculum.”
Still, things are looking better for autistic children, with disability policy and various kinds of therapy available. Autism is also increasingly diagnosed earlier. However, despite skills training and education, the future does not look too bright for children with autism.
“Our children are trained and skilled, but who would employ them? No one wants to employ them just because they are autistic. We employ some of them in our organisation but every year we get new admissions and we cannot accommodate everyone. This is where the government should intervene,” said Basnet.
Basnet was deeply moved at seeing autistic children work and receive paychecks on her trip to the US a year ago. She came to know that the government there provides tax waivers of a certain percentage or subsidies to businesses that employ the disabled.
“It made me realise that there is so much to do for these kids,” said Basnet. “We are just teaching them to be independent, but we haven't yet been able to provide them with an opportunity to be independent.”