WOW | WOW Feature

Understanding AUTISM

What if the world you know is way louder than it is? So loud, so distracting that all you want to do is shut your ears and sit in a corner. What if the world is made up of colourful patterns, of only red boxes or yellow triangles or green squares? What if…?

WOW strives to take a closer look at autism in the country. Many people are aware of the word, but not many know what it exactly is.

Kreet wasn’t responding to non-verbal gestures when he was an infant. Neither did he mingle with other children or behave like a normal child. This made his mother, Sunita visit pediatricians but she never received a sound diagnosis. Much later, she visited a psychiatrist and learned that her son has autism. Completely unaware of what it was, she started looking for information online and came across an organisation in New Delhi. She immediately left for India to know more about autism and underwent a parents training for people with autistic children.

Today, she runs Autism Care Nepal Society in Kathmandu to help others like her, who don’t know where to go for help. The most common knowledge about those with autism is their inability to communicate in social situations, hypersensitivity to certain process, and their single-minded interests.

We are on a journey with them, finding a path, not a destination. We learn as we go, trying to discover their abilities and ours

Dr. Sunita Maleku Amatya started the first Autism Centre in Nepal in 2008. “We started out without having much knowledge about autism. Through these years, we have explored and acquired information about autism and skills to teach these special children,” reflects Sunita who is an anesthesiologist by profession. ACNS deals with special children education, advocacy and parent training.

ACNS currently has around 400 families in their network and provide autism-related services of various kinds to more than 60 children every month. Through their early intervention programme, they have been able to include students in the mainstream set up as well. “Because of the awareness, we have been able to support early intervention which helps provide better results,” she shares.

Earlier autism was misinterpreted as an intellectual disability. In Nepal Disability Act, there are 10 categorisations and the ninth one is autism. “Though the government has categorised and recognised it, they lack a plan of action. Besides providing Rs. 2-3 lakhs per year, the government hardly takes any initiative to build separate manpower and infrastructure to deal with autistic children,” she shares.

Pramila Neupane is a single parent of 10-year-old Dikshita who was diagnosed with autism when she was 3.9 years old. Pramila recalls it was tough for her to accept the reality and manage the household and a child with special needs. “An autistic child requires attention but I have other responsibilities including earning a living and doing the household chores,” says Pramila. Besides, she has to deal with the society.

Lalita was among those who didn’t even know how to pronounce the word autism, forget about knowing what it means. Her child was diagnosed when he was three. He just wouldn’t speak. Post-diagnosis, for many months she tried teaching him the way other kids learned, but it did not work. She eventually went for the parents training at ACNS and became her child’s therapist. “Today my child is independent. He is able to manage himself and knows the basics,” exclaims Lalita. Such parent training by ACNS has been a driving force for parents to understand their child better. And then parents become advocates for their child in education, home situation and society.

Apurva has Autism. He finds it difficult to navigate the world as we know it. He can read whole words, remember the direction to places years later, loves moving around and has endless energy. But as the years passed, questions haunted his family:How will Apurva earn a living? How will he be independent? “There are no laws, no policies in the corporate world which supports autism,” states Sunita. Meanwhile, there is no official data on how many children in Nepal are autistic. ACNS predicts there are around 300,000 autistic people living in Nepal.

While each case of autism is unique, and there are great variations in the type and intensity of the symptoms observed, in general, it is characterised by the inability to cope with social interactions, by alternating reserve and boisterousness that is unmindful of jarring with what is considered appropriate.

The teaching strategy, perhaps, the widest use is Applied Behavioural Analysis, which focuses on a continuous reinforcement (through a sort of carrot and no-carrot model, which provides continuous encouragement to good work through high-fives, pieces of candy, and so forth) of certain behaviours and likewise discouragement of sudden temper tantrums and blank refusals to follow instructions.

TEACCH, another method applied, creates an environment of simple pictures, rhymes, songs and suchlike that aid identification with objects and situations in the real world — this is a sort of simplified model for our complex surroundings.

“Sensory processing differences in the autistic make them think and perceive the world in a very different way. So we need to build lessons around their learning style. Some of them have additional motor problems and they are unable to write or speak well, but this issue can be solved through technology such as computers and iPads,” explains Sunita.

Through campaigns, Sunita stresses that there is a need for each of us, whether we are directly associated with people suffering from the condition or not, to understand autism, to try to learn what the world looks like through their eyes. Because we are the society that their teachers are trying to help them cope with and we must create roads that are easier for them to traverse, create a space in our minds, and hence in society, for them to find their feet in.

In the near future, ACNS hopes to provide appropriate programmes for teenagers and young adults with autism to learn living skills and hopefully, to blend in with the community and take them to job opportunities. “We are on a journey with them, finding a path, not a destination. We learn as we go, trying to discover their abilities and ours,” concludes Sunita.