Speaking without words

In India, 10 million people are estimated to be on the autism spectrum. Autism is a neurodevelopmental disorder that has grown from one in 150 children (2007) to one in 88 children (2012) in the US, with the risk being four times higher for boys. A combination of genetic and environmental factors is thought to be responsible. A cause has not been definitively identified. With science unable to provide all the answers, we learn about this condition from many sources. These books, one by a boy with autism and the other by a mother whose son has autism, take us on different journeys to the same destination — understanding this condition better.

The Reason I Jump

Autism has been likened to people imprisoned in their bodies, walled off from the rest of the world by factors that vary from person to person. Naoki Higashida’s ability to explain what he feels constructs a few skylights that help us glimpse his wonderful mind.

David Mitchell, a bestselling and acclaimed author and his wife KA Yoshida who translated the book are parents of a boy on the autism spectrum. In the introduction, Mitchell writes, “ The Reason I Jump allowed me to round a corner in our relationship with our son… It knocks out a brick in the wall.”

Higashida invites readers to understand his world by answering specific questions. The fact that a non-verbal child of 13 years can painstakingly answer these questions using an alphabet grid in Japanese itself advances the body of knowledge on autism. Some revelations are that people on the autism spectrum don’t dislike society but can’t navigate it with ease; that a child with autism can get “the big picture”; that he/she can feel and relate these emotions to others; and that they have wishes and desires much like everyone else. On social interaction, Higashida says that people with autism end up alone because “things never, ever go right” due to their difficulties in expressing themselves.

The book has many messages for society. “To be able to study like other people, we need more time and different strategies and approaches,” says Higashida. This differentiation needs to be internalised by a conventional education system that is unsuited to autism’s learning needs. Higashida’s thoughts on autism are that “people with autism are born out of the regime of civilisation.” Speaking of a “deep sense of crisis” existing on Earth, he says, “We are more like travellers from a distant, distant past. And if, by our being here, we could help the people of the world remember what truly matters for the Earth, that would give us quiet pleasure.”

As a special educator, I am left with a sense of wonder that such purity exists every time I meet a child on the autism spectrum. Reading the author’s opinion on autism, it is tough to connect this depth of thought with the other challenges he faces. The unevenness of skill development is brought home yet again — such thought can and does co-exist with an inability to carry out mundane tasks.

My approach to this book was to learn in order to connect to my work with children. This was difficult to do in some parts of the book. A saying in autism circles is “If you know a child with autism, you know a child with autism”. Each child needs a customised approach. The book tends to generalise in several places, saying ‘we’ where ‘some of us’ is required.

While parents of children on the spectrum can take comfort from this book, the temptation to use it as a definitive source on what children on the autism spectrum feel, think and experience has to be resisted. The author explains away sensory problems as “feelings” in some places. The presence of sensory difficulties in autism is well researched and documented. These niggling issues do not take away from the book because of the wealth of information and the little bits of fiction that are interspersed with the questions.

The book ends with ‘I’m Right Here’, a short story about the afterlife, written in the voice of Shun, the soul of a boy who dies in an accident. The story shows the author’s ability to put himself in another’s shoes, predict emotions, use humour appropriately and introduce unexpected twists in the narrative. Every writer aspires to write like this. Higashida has grown to see autism as one of his strengths, “preferring to be autistic versus normal”. Reading The Reason I Jump, one is hard put to argue otherwise.

Finding Neema

This is an honest, if occasionally too detailed an account, of Juliet Reynolds’ life as an Irish/English art critic living in India with her artist husband. Happenstance brings Poonam and her son Neema into the couple’s lives. Neema was born with clubfeet and later diagnosed to be on the autism spectrum. The book takes the reader back to a pre-liberalised India, with its middle-class aspirations of a government job as the highest achievement. Reynolds’ husband Anil Karanjai, an artist ideologically committed to the far left, is an integral part of the story. The couple takes up guardianship of their household helper’s child Neema, who comes across as a charming child/adult, able to roll with the punches and hold his own. The honesty of the book shines through, especially while talking of the author’s relationship with Neema — the good, the bad and the exasperating. Parents of children on the autism spectrum are often pushed to the wall by their offspring and this book speaks with disarming honesty about those times.

The book doesn’t detail therapy Neema might have undergone, with only the last two chapters being of interest to parents looking for such information. The work of people like Saswati Singh, the Nav Prerna Foundation, Merry Barua and Action for Autism is mentioned briefly, providing a reference to parents interested in contacting them.

As a new entrant to the field, this book gives me hope. Such chronicles illustrate how far our society has travelled. The book ends on a note of activism for autism — that there is much, much more to be done.

Sangitha Krishnamurthiis a special educator in Bangalore

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