Friday 27 January 2012

In a World of Their Own

Times of India, January 21, 2012





I once had a Ph.D. student, one of my very fi rst ones, and a pretty good one. I had fond hopes for her future achievements. She had a son early in her tenure of study with me. He was, in fact, about a year older than my daughter. Within a few years, it became clear that he was not quite like her. He did not respond to external stimuli in quite the same way as her or other children of his age . By now, Uma had finished her thesis, one that a reputed referee said he would be proud to have his student write. In fact, a paper that she and I had written made such a good impression on a Fields Medallist at Berkeley that he got one of his students to analyse our construction in detail for her doctoral thesis.


It was fast becoming clear, however, that Uma's life was going to be devoted not to the esoteric charms of subfactors but to coming to terms with the reality that her son was autistic, and giving him as much of her time, love and attention as was needed in order for him to live a `normal' life in a world which was not something that he seemed to comprehend and relate to in the manner that the rest of humanity did. She has moved from India to Dubai, and later, from there to UK, their lives and country of domicile dictated by which place seemed to provide the facilities and ambiance most conducive to his coming to grips with living in a society that he had problems identifying with or communicating to. Now he has completed his schooling and she is in a dilemma as to whether to opt for an `advanced', but alien society (with its facilities for his special needs, as also a sometimes simmering racial prejudice) or `back home' in India (with the support of an extended family, as also a staggering lack of sensitivity to people with special needs). Her only fear/worry every living moment is how he would manage after his parents are no longer around. Fortunately, he seems to be reasonably proficient with the computer, so it should not be too hard to get him placed in some suitable job.


But there is another couple I know (whom I taught a Master's level course in Delhi more than thirty years ago) who would give anything for their son's autism to be as `high functioning' as that of Uma's son. Pramath and Swati have also subsequently lived in Chennai, Allahabad, Canada and USA before moving back to Chennai in their perennial quest for the right milieu for their son. In fact, a couple of years ago, when they were visiting here from Canada, and debating the eternal problem of `where is best', I thought Swati appeared to be close to some kind of a breakdown, and she seemed to be at the end of her tether. As they have always treated me as a teacher and well-wisher, I presumed to suggest to them that in view of some sort of support system of friends and well-wishers that existed here, coupled with the fact that the feudal system in India would give her at least some sort of support/help in daily living, they may be better off in India. (God knows she needs to be strong at least for her son's sake!)


As I said, they are now back in Chennai, and I am glad to say she looks a lot more emotionally confident than during their last visit to India. But I have a dreadful fear that in my meddlesome manner, I might have given them wrong counsel. I say this because Indians, while they can be considerate and helpful when things are stated sufficiently clearly to them, are unfortunately not a naturally sensitive race. It is almost second nature to treat anybody who has any sort of impairment, or is simply `different' in any way, as some kind of a moron or lunatic. She was telling me about the time they were recently browsing in a book-shop and her son was making what would seem to be meaningless sounds and repetitive gestures to one who had had no prior exposure to autistic people, when a 25-year-old lad walked up to him and said that `if he behaved in that fashion, then people would call him mad and throw stones at him'! In her charitable way, she says that the lad was probably himself autistic or suffered from a similar condition. But you can see why I feel responsible and wary lest our people may make them re-think their decision to return home.


I asked Pramath to try and explain the precise nature of their son's cognitive problems, and if I understood him right, it has to do with an inability to put himself in `the other person's shoes'. (I am afraid that too many of our countrymen suffer from that particular malady!) When will we ever become more sensitive and caring when we perceive somebody who is even slightly different?) Before we come to pre-determined opinions, we should all (a) look at this eye-opening video and (b) read the hope-inspiring book Emergence Labeled Autistc by Temple Grandin (for both of which sources I must thank Pramath.)


A few days after the above conversation, there was a very informative piece in the Deccan Herald in Bangalore listing various `Apps' which had proved to be very good facilitators for children with autism. This same source provided various links (such as a4cwsn.com, bit.ly/solqXY, snapps4kids.com and www.iautism.info/en which cannot but give a much-needed glimmer of hope for people suffering the burden of this cruel yoke. You can be sure the first thing I did on learning of these web-sites was to pass on the info to Uma, Pramath and Swati; and I urge other parents in the same boat to try a computer or i-Pad as a potential life-line.

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