In the process of understanding the autistic world of their son, Akila Vaidyanathan and Sriram Narayan have taken other parents, teachers and autistic children on their journey of discovery. Esther Elias reports
Four-year-old Nishant Sriram was happiest among the trees, hills, wind and water. In closed confines however, he often wept for hours but couldn’t explain his worries to his mother, Akila Vaidyanathan. While sometimes he let her hold and comfort him, sometimes he pushed her away. Through both, Akila wrote, “I will be beside you and surely, I will find a way to teach you to get in touch with what’s bothering you, and tell me about it, so I can help you better. I will not blame you or myself for we are both together in this — fighting non-verbal autism.”
At 17, Nishant still doesn’t speak conventionally. But Akila and her husband Ram’s journey with him has not only taught him to communicate effectively through alternative means, but has also lead the couple to spearhead several parent groups on advocacy and activism regarding autism. In the process, Akila has earned several degrees and diplomas in alternative therapies, with which she now trains teachers and other autistic children.
The story begins with two-year-old Nishant who had crossed all normal childhood milestones, except for talking. “He would pick up some words and lose them later. He mostly signalled non-verbally,” says Akila. A Bangalore paediatric neurologist diagnosed Nishant as autistic and started him on speech and occupational therapies. He also attended a Montessori school which taught through tactile methods. While these helped, five-year-old Nishant still couldn’t speak complete sentences.
By now, Akila had resigned her IT job and completed a diploma in special education over her weekends. With other parents in Bangalore, the couple formed India Autism Forum (IAF, 2002), which focussed on inclusivity for autistic children. “It wasn’t just about schools letting autistic children in, the average man on the street needed to understand what autism was. If our children lose their way, they can’t verbally explain themselves. So, strangers shouldn’t abuse or take them to the police,” explains Ram.
It was during the IAF days that Akila made her first breakthrough with Nishant, who could now read and understand full words but couldn’t express intent with them. “If there was water before him, he could name it and drink it if thirsty, but in its physical absence, he couldn’t ask for the abstract idea of water,” says Akila. That’s when she found the Picture Exchange Communication System (PECS) online. One person trains the child to match every physical object with an allotted picture card and another helps him prompt. Thus, knowledge is translated into communication. “Within six weeks, he could bring me the card for water. It puts the burden of communication on the child, instead of the parent constantly asking yes-or-no questions,” says Akila.
It was also through IAF that Akila met Soma Mukhopadhyay, mother of Tito, globally the first non-verbal autistic child to author books. “Autistic children are considered mentally retarded because of their low attention span, but Soma believed that age-level material could be taught to them if presented as fast at their attention shifts — a method called Rapid Prompt Method (RPM),” explains Akila. Today, she is qualified in RPM and PECS, as well as several other therapies, and consults with the Communication Department at Sri Prashanthi Academy in Coimbatore, where Nishant studies.
Struggling to fit
While in Bangalore, Akila was also one of the founding members of Autism Society of India (ASI) — a nationwide body that fronted advocacy for autistic children before a Government that did not yet include the disease in the Persons with Disabilities Act. ASI is also the pioneer of Prayas, a programme that has enabled highly-functioning autistic adults to take up regular jobs by training them on iPads, which are touch-based and, hence, autism-friendly. “The efforts are to mainstream autistic children as much as possible and Prayas has successfully proved it is possible,” says Akila.
Even so, Akila writes of Nishant, “When he runs between people, crowds their space and makes weird noises, he looks as out of place as a frog on a lily pad. Am I struggling to make him fit into this artificially fabricated social world?” This idea led Akila and Ram to move to Coimbatore where Nishant had easy access to the hills. Today, Nishant holds two bronze medals in cycling at the Special Olympics Bharat and hopes to compete in the Internationals next year. Akila and Ram also collaborated with NALS Outdoors India Limited on annual adventure camps for families with autistic children. “We did the sloth walk, trekked, swam...it was an equaliser of sorts because often, the parents were scared but the children would jump right in. For once, we focussed on our children’s abilities, not disabilities.”
In Coimbatore, Akila and Ram have recently begun Amaze, an organisation that teaches parents to ‘navigate the autism maze’. “Parents often worry about who will look after them in their old age and about who will look after their child after them,” says Ram. To answer both, the couple now work with Colonel Sridharan of Serene Retirement Community, to incorporate people with disabilities in the senior living facilities.
“One in every 150 Indian children is autistic but this excludes the children who are either misdiagnosed or left unscreened,” says Akila. Hence, she recently trained 100 Sarva Shiksha Abhiyan teachers to pick up the early signs of autism as well as manage them with resources created in Tamil. As she writes in her poem Glass Case, the hope is that more individuals who can make a change, will:
Would you care to join me sometimes
Inside my case?
Maybe then, you would hear my screams for help
And feel my pain