My cousin’s house overlooks a broad nala or open sewer here in my hometown Patna. My cousin died a few years ago; he was a doctor and his wife, my bhabhi, is also a doctor. When I visited my bhabhi last night, parking my car perilously close to the dark nala, our conversation turned very quickly to the fact that bhabhi’s daughter is bringing up an autistic son.
Let’s say that the boy’s name (in the manner of the highly literary Hindi names given to middle-class kids in India these days) is Aashlesh, or Ashu for short. My niece has done a brilliant job bringing up Ashu: She has been tireless in taking the boy to behavioural psychologists, speech and language therapists, occupational therapists and many others. As a teenager today, Ashu faces challenges but he excels in mathematics, he plays the cello beautifully, and is a happy, affectionate boy. His sense of empathy is unusual and heartwarming.
The single fact that moved my bhabhi to tears was that Ashu’s father has never aided or encouraged his wife, my niece, in her remarkable efforts. Worse, he is often dismissive of the boy, callous when Ashu brings over his report cards, humiliating him with physical punishments if he makes mistakes. This man, Ashu’s father, is an intelligent and successful professional; people find him a caring host and he has many friends. But on the subject of his son, he becomes a monster.
I feel a sense of rage when I think about this because I have close friends in upstate New York, where I live, whose older child is autistic. The boy’s father is a writer and his mother is a photographer. The mother’s work in this case has been a project, as long as the boy has been alive, of documenting his life and his individuality. My friend’s photographs reveal an inner landscape: On occasions, of social isolation and, at other times, of a studied solitude. In other places, you glimpse his sense of connection, with his brother, with his dog, with nature. And as the boy has grown into his teens, you see his changes, including his oblique but stirring, even piercing, use of language. His mother is working on assembling a book of photographs. When I was looking at the images and the bits of prose my friend had put together, I felt I was witnessing a miracle. It was as if in a slowed-down film, I was able to observe the emergence of a full, complex humanity.
On the drive back from my bhabhi’s house last night, I wondered whether the book that my friend is going to publish is the gift I need to give to Ashu’s father.
But why only Ashu’s father? Don’t we all need to be educated about how to raise autistic boys? (I am saying boys here partly because boys are more likely, by a 4:1 ratio, to have autism than girls). I very strongly feel that we need more lessons in how to be patient, more welcoming, less ready to judge.
I have a boy. He is 15. When he was a toddler, his pre-school teachers warned my wife and me that our son would often stumble and fall. There was increasing evidence of his difficulties with fine motor skills. We were required to take him for many tests, so many that I have forgotten their names. Our son, even as a kindergartner, had a fine verbal talent and a sharp sense of humour but I could see that he had trouble tying his shoelaces or buttoning his shirt. His overzealous teachers let us know, more than once, that he was going to struggle in school. I would be lying if I said that I wasn’t worried.
Just before the pandemic arrived, I had sold a book and bought a ping-pong table that I put in my dusty basement. During lockdown, I’d play with my first-born, a daughter, who is six years older than my son. Sometimes, we would ask my son to join us. He found the game difficult. I despaired at such evidence. But I shouldn’t have. One year passed, then two, and then three. My son became a good ping-pong player and then even better. When we were spending a semester in London, he took his school to the finals of a championship.
The story I’m telling here is partly about being patient and helping a child change; but I’m also partly telling the story of a wider system of support that allows change to take place. I’m talking of an educational system that allows intervention and expert aid. It is a privilege but it ought to be a right. We need to fund not so much the extravagant projects through which we declare our national achievements but, instead, the services through which our children are supported despite their disabilities.
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No funding for wars; only creches and hospitals and schools. I’m saying this because our son, with no input from my wife or me, founded a local organisation in our town to support the victims of war in Palestine. I’m touched by his empathy and his activism. While driving him to or back from protests that he organised, I’ve sometimes complained bitterly about the trouble he was putting me through. So much anger.
I feel ashamed writing about it here. I ought to recognise that in our world filled with hypermasculinist, aggressive ideologies of violence and triumph, we need to be supportive and tender, always and everywhere. Which is to say, when it comes to raising a boy, I first need to learn to be a better parent.
Kumar, a novelist and artist, is professor of English at Vassar College
