Beyond the silence: my life, the world and autism Author: Tito Rajarshi Mukhopadhyay ISBN: 978 1 89928 031 5 Code: NAS 113 £7.99 excl. vat £7.99 incl. vat

"An extraordinary opportunity to explore the hidden world of autism." Chris Terrill, Senior Producer, BBC

Tito is an 11 year old boy from south India with a special talent. Although almost completely non-verbal, he can communicate his thoughts and feelings through remarkable prose and poetry, written in fluent English. Tito also has autism. Through his writing he explains how he deals with this hidden disability and how it affects his view of the world. Tito gives us a unique insight into the mind of someone with autism, as well as a fascinating account of growing up with a disability in modern India.

Published by The National Autistic Society, 2000, 112pp, pbk

Read an extract from this book online

Review

This little book in four parts is an extraordinary publishing event. With its ambitious sub-heading My life, the world and autism, it is written, we have to accept (with some reservations as to its complete authenticity) from the heart, mind and by the hand of an Indian boy with classic autism.
 
The first part, the Voice of Silence, is asserted to have been written by Tito at the age of eight. The second part, Beyond the Silence, and the third part, The Mind Tree, in 1998 and 1999. The fourth part consists of eleven poems, of which three are about his visit to London in December 1999. The foreword by Lorna Wing mentions that he has written other books, often in verse. 

Only Tito's age and this account of his life, originally hand written, his fluent and often eloquent use of English, the intelligence and sensitivity of his world view, along with television, have propelled him into print. The editorial process from hand written manuscript to publication is not revealed except for the comment that very little has been changed so distortions of syntax and grammar give verisimilitude to the text. 

Of course, adults with high functioning autism and Asperger syndrome have published life histories where they look back to their childhood, their sense of difference and their successful strategies for living and working in the community. They have speech. Tito on the other hand is more or less mute. Closest in age to Tito is the German, Birger Sellin, whose In dark hours I find my way was written and published in 1994 when he was 21.

One does wonder whether the NAS would have published the thoughts, observations, judgements, home-spun philosophy and the poems of an 11 year old if the author had not possessed, as Lorna Wing puts it in her introduction, remarkable skills in contrast to [his] general level of disability [arousing] feelings of wonder, astonishment and intellectual curiosity.

That curiosity is my reaction that accompanies a close reading of the book: curiosity about the part played by his dedicated and determined mother, his teachers, his reading, his listening, and a phenomenal, maybe eidetic memory; curiosity about writing in English and the mental negotiation between the birth language and another. Nobel Prize winning Bengali philosopher and  poet Rabindrath Tagore wrote in Bengali and English. But here is an eleven year old who has said that he prefers to write in English because our alphabet has only 26 letters.

Before me on a copy of lined paper headed acknowledgements in the hand of a normal 6 year old, Tito writes: I tried to put down the memories whatever was in me as my eight years of life had stored through my understanding and experiences."

Autobiography, biography or fictions? Our memories start at around two and a half. This two and a half-year old recalls a time of a world of shadow: he searched everywhere for his shadow. He flapped to call it, there was nothing but darkness. 

He recalls (or does he?) his mothers words when she taught him to ride a tricycle; that his mother  got up at 4 a.m. (did he look at the clock and record the moment?), finished her bath and half her cooking; what he thought on seeing his dead grandfather laid out with flowers, garlands and incense sticks.

At the age of five he wrote to her [his speech therapist] "Being autistic I have every right to be unable to talk. " Then, to close the matter, he placed his hand on the page and traced it.

It is difficult to accept that this is all Tito's own recollection of a disturbed growing-up. Certainly 'The Voice of Silence' suggests collaboration, an intimate one-sided conversation with his mother, even if after the event he wrote it down unaided.  How at the age of eight could Tito recall that a medicine prescribed to him at two and a half was Encephabol? Can anyone's infant memory be so exact on the name of a drug?  May there not be borrowed memory syndrome here?  Tito has a photographic memory, scanning books and journals.  Did he scan the name on the bottle? Or is his auditory memory so amazingly receptive and retentive that it served him as a sort of hard disk, before he could read? 

Rather are we encountering the mind gift of the idiot-savant, nurtured by diurnal interaction with mother and the inheritance of two very intelligent parents, both with masters degrees? He writes that her voice was the main source of my learning: a powerful case for re-evaluating facilitated communication. 

Or, does the command of English, the frequent rhythm and fluency of Titos prose, his colourful descriptions, his capacity for enquiry and his imagination all suggest that, while exhibiting autistic features, Tito is not autistic? Is Tito rather in some borderland territory, some unusual sub-group of communication/social disorders which defies neat classification?

Tito has self-awareness: "the boy flapped and cried when situations got difficult to cope with; and Mother, I can't find my voice, said the boy, very desperate, as his other self was reminding him if not today, then never!" There is historical consciousness: of the beginning and end of time my story will continue until the moment of my last breath and maybe beyond it also.  Maybe it was there before my first breath had taken place.

The poetry has attracted attention. It is not of itself remarkable.  Schoolchildren here write similar verses. The poems which were read as a voice-over in the film about the London visit in December 1999 are the poorest poems in the book.  Doggerel is mixed with archaic phrasing, arbitrary line breaks and prosy language. The other poems merit the attention one should give to the often naïve articulations of any child.  There are some striking images, similes and metaphors.  Of course, where there are lines that sing, Tito only hears them in his head.

Lorna Wing comments that Titos writings have the characteristic self-absorption of a person with an autistic spectrum disorder. Oh dear, poor Wordsworth! In the 150th anniversary of his death, the longest autobiographical poem in the language, The Prelude, must therefore raise a doubt about his mind and behaviour.

On the British Picture Vocabulary Scale Tito scores as a 19 year old.  Preferring to write rather than speak, he confounded the experts who have only found similar cognitive abilities in the use of written language in articulate adults with Asperger syndrome (see Autobiographical Writings by Francesca Happe in Autism and Asperger syndrome, 1991.) For analogous abilities only in visualisation, e.g. Stephen Wiltshire, see prodigies by Oliver Sacks in An Anthropologist from Mars, 1995)

The NAS is to be congratulated for making this unique document available for us to study and enjoy. It is more than a child's tale.  It is an unusual early life story in a non-European setting and it was right to honour Tito's written request for publication. His autobiography, biography, fictions, the little vignettes of 'The Mind Tree,' the verses including those punctuating the text should be read for themselves and not as yet another icon of disability.

Tito has an ambition to go to Oxford and read English! We wish him well. We would also like to read more and learn of his progress. 

Michael Baron

Parent of a child with autism