Beyond The Silence: my life, the world and autism Tito Rajarshi Mukhopadhyay
- March 30, 2021
First person accounts of what it is like to live with autism necessarily come from people who do not have substantial learning disabilities or communication problems. They provide us with insights into autistic experiences but they unavoidably leave a sense that the picture we are forming is incomplete. This memoir by Tito, a young Indian man, helps us inch nearer the inner world of the otherwise unheard majority – he is significantly disabled and essentially non-verbal, struggles with social interaction and cannot live independently. And yet he has staggering literacy skills. He tells us of his early life and development and especially of the influence of his mother’s extraordinary dedication to ensuring he achieved everything he possibly could in life.
Tito’s writing flips between the first and third person. He describes experiences that are typical of what we know of autism – intolerance of change or of novel environments, which can provoke screaming or withdrawal; great difficulty in social interactions; learning new skills is a formidable challenge. But much of what he says I found challenging to my preconceptions. For example although Lorna Wing (who wrote the foreword to the book) comments on his self-absorption I was struck that he seems aware, at least in retrospect, of the effect he has on other people – his mother’s love and determination which comes coupled with frustration and times of distress, and also how others must see his odd behaviour.
A standard view (cliché?) about autism is that the main problem is an inability to form an understanding of the mental life of others. And yet one of Tito’s main self-reported struggles seems to be to exert control over his own actions. He cannot copy movements. Even when he knows what he wants to do he cannot initiate actions. He comments on all this without it being entirely clear how he feels about it. ”He needed to move on. He needed to write”. But then “The boy continued to flap and to remain mute”.
Tito writes poetry and tells stories. His book The Mind Tree is astounding. And he seems to take some of the playfulness of creativity into his sessions with clinicians and therapists: “He got proud of his worthless worth” and notes that “The boy was too much flattered by the remarkable impact he made on the people who wondered how he possessed such a gift”.
Tito and his mother Soma now live in the USA, and online it is easy to find some scepticism expressed about Soma’s attempts to generalise her approach with Tito to a more universally applicable therapeutic approach. It would be a shame if contention there detracted from this remarkable book – the story that Tito has to tell and the creative ability he has to show us.
