B. Sathish (14) has a favourite pastime: sitting outside his house in Port Blair, viewing the hills and the jetty, gazing into the sea to see if he can spot his father’s boat. “Papa is coming”, he says repeatedly – he speaks only a few words at a time, and that too, rarely. His father, B. Ramesh, an employee of the Andaman Public Works Department on Chatham Island, gets leave to visit his family just once in two months. His wife Punyawathi moved to Port Blair with Sathish and his younger sister Vaishnavi (12) four years ago when Sathish was diagnosed with autism.
Both Ramesh and Punyawathi regret their son’s late diagnosis. “If we had been informed earlier we would have got treatment earlier and he would have been better by now,” they say. The couple were worried when their firstborn didn’t crawl and sit up at the expected age but the doctor on Chatham Island kept telling them that he was just a little slow and would get better. He used to go to the local government school but when he reached Class 5 he simply stopped speaking. (Some autistic children are non-verbal i.e. they cannot speak, while there are others who choose not to speak.)
The couple took Sathish to Port Blair where he was certified as being on the autism spectrum. Shocked and in denial, they went to Vellore to get a second opinion. But after accepting the fact, Ramesh decided to send his family to live in Port Blair because it had better medical facilities and also a special school. He says ruefully, “I have requested for a transfer to Port Blair multiple times but it has not been approved yet.” When there is an emergency his presence becomes vital; six months ago a vehicle hit Punyawathi while she was walking on the road and he had to rush to Port Blair to take care of the family.
Punyawathi, who has studied till Class 8, used to be a domestic worker but she quit when she found it difficult to juggle her job and looking after Sathish. The couple haven’t been coached in managing his “behavioural problem”; they do not know what triggers his bursts of aggression that make him suddenly lash out at people, even his mother and sister. “We find it difficult to control him when he is hyper,” says Ramesh. “He breaks things. One day he broke down the bathroom door.”
Since his fine motor skills have been affected, Sathish finds writing difficult, and needs help in wearing his clothes. The most distressing issue for his parents is that he is unable to wash himself after passing stools. Punyawathi says helplessly, “I make him hold my hand while I clean him so that he knows what I am doing and maybe slowly learn to do it himself. Today I am there, tomorrow I won’t be there; who will do it then?”
Sathish goes to a special school, which he enjoys, and a regular school, where he merely marks attendance. Punyawathi accompanies him to both. In the morning hours he gets physiotherapy and special education, after which attends the school where “he will simply go sit in class”. At home, he watches TV, tosses around a ball, or plays with his sister. Vaishnavi, who studies in Class 8, likes science and maths, and wants to be a doctor when she grows up, says, “I love my brother very much. He is always there to protect me. He takes me out for walks, and also walks me to and from my tuition class.” Her mother says, “He gets very angry if somebody scolds her. If I try to hit her he comes between us to stop me. If he sees her crying he goes to her and says ‘Don’t cry’.”
Punyawathi sometimes muses over early memories of Sathish. “He was such a fair, cute baby. All of us, including my parents and in-laws, celebrated his birth. And then…” For a moment she sounds despondent but then she quickly consoles herself, “At least his disability is not as severe as that of some others. He can walk, he likes going out. When we go to the market he carries the bags and then I feel happy that he is helping me.” When she shares her occasional gloomy thoughts with Ramesh he cheers her up, saying, “Don’t be disheartened. Let us pray for better days.” And better days will arrive only when Sathish, as his parents fervently hope, is able to independently take care of his most basic needs.