July 25, 2020
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India's autistic population could be 2 million. Why then is it called a 'western disorder' like AIDS?

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T. Narayan
  • Aditya, 6, is barely familiar with English, but spells "hippopotamus" perfectly at first go without ever having seen the word.

  • Vishu, 5, recreates with plasticine the hubcaps of the Zen, Corsa and Esteem cars, startling his mum who hadn't yet noticed that hubcaps have unique patterns.

  • Deepak, 8, narrates a monologue on the glories of the Roman Empire, when history has not even been introduced as a subject in his school.

    Aditya, Vishu and Deepak may seem like the proverbially 'gifted' children, the ones wooed by schools. But their reality is harshly and decidedly different. Aditya has been certified as 'mentally retarded', ie with a below normal IQ. Vishu doesn't attend a 'normal' school, though he's a bright and happy sunshine student who wows everyone with his observation powers and hand-eye coordination. Deepak was shunted out of regular classes and put into a special education programme. This is after getting admission in one of India's best schools by virtue of his supernova smartness. Yet, a singular cause forces the three to walk on different paths from everyday people. A cause that links the gifted speller, a talented sculptor and a class topper together.

    They have been diagnosed with autism, a wide-ranging disorder that causes communication difficulties and baffling behaviour that veil their abilities. This means that hyperlexic Aditya (he has superior reading and spelling skills) uses one word as a sentence substitute. Saying "hello" for him is as difficult as trying to lift a one-kilo-steel-brick with his tongue. Saying "How are you?" is even harder, since autism implies self-involvement—so your response doesn't matter, nor make sense, to Aditya. Vishu, whose parents call him "our little Sufi" because he loves to whirl endlessly like a dervish, uses spinning to restore his sense of balance. Deepak, who missed his mum when she travelled, never spoke to her on the phone—the sensation of a receiver on his ear was unbearably painful. But more disturbing than his disconnect with his mother is our deep disconnect with a disorder which is not restricted to these three 'diagnosed' examples.

    The muted truth is that about 2 million people could have autism in India today. The global incidence of the disease is 1 in 500, according to the World Centre for Disease Control and Prevention, US. And it's four times more common in boys than girls. Yet, its overwhelming prevalence remains unknown and unproven in our country. Says Dr Shobha Srinath, professor and head of child and adolescent psychiatry, nimhans, Bangalore: "Though we may not have population-based studies to establish its prevalence, the number of diagnosed cases is rising every year." Says Dr Veena Kalra, professor of paediatrics, aiims, Delhi: "A diagnosis is often 'missed', or confused with mental retardation (MR). MR implies IQ deficiencies while autism implies language and communication deficits. Though our population may not be 1 in 500, it is significant, and growing." There's also appalling ignorance about the disorder among everyday people and physicians alike.

    That's possibly because autism is a kaleidoscopic universe, which includes the highly gifted and mentally retarded, born orators and the mute, children who haven't ever hugged a parent to those who kiss strangers. Some who batter their heads against walls and others who wail all day. Some who can't work zips but can happily navigate the World Wide Web.Some who eat only whole dals, rajma or chhole for both meals everyday. Who perceive a silently-turning fan as loud as a 16-engine steam train crashing down the tracks. And many who make flapping or rocking movements which confuse normal people—who stare and call them paagal (mad). It is these bewildering behaviour patterns that bind them together on the autistic spectrum, ranging from low- to high-functioning.Yet, try as hard as they might, most can't seem to twist their brain spanners to fully tune into everyday life (others lack the motivation to tune in).

    For parents of 'low functioning' children, autism is a mysterious disorder that hides their child behind a dark, heavy curtain from which s/he emerges, occasionally. These are the scattered "good days" that help parents handle the crazy swings between silence and the screaming fits and things like self-inflicted biting and head-banging, and the daily toll (at least 10) of soiled sheets that don't disappear once they reach adulthood; indeed, the number of dirtied sheets only increase. Autism can wreck lives completely, subsuming families with grief, pain and anger, till parents find the strength and faith to cope. Knocking on doors for help, mining down to the last depths of the internet, and travelling to Bangalore or Boston for a remedy is a sacred ritual; as is a father's daily prayer: "Please god, grant me a one-hour visitor's pass to help me enter my child's secret universe."

    But right now, neither god nor the government is listening. Says Merry Barua, founder of Action for Autism (AFA): "Even though autism is a far more complex disorder than most other recognised disabilities like MR, it is still not supported by the People with Disabilities Act. So we get no government funding, school grants or travel concessions like other disabled groups." Even health insurance is taken away when it is most needed. Says one parent: "Since I cannot certify that my child is 'of sound mind' on my Mediclaim form, none of our massive medical expenses get reimbursed." The only hope is to reduce functional difficulties through early intervention. Intervention means everything right now, for autism has neither any confirmed causes nor any cure.

    Even the Indian government has shrugged off autism, calling it a "western disorder" like AIDS. But the hard facts flying in the face of such ostriches are that in the last five years in Mumbai city alone, three schools have been instituted exclusively for autistic kids. Some Indian students have come from as far as the US and UK. For, an educational package that includes speech and behavioural therapy can come as cheap as Rs 1,000 a month here, plus one can afford a domestic help. Most metros have learning centres for autistic children, including smaller cities like Lucknow. In Delhi, the phone rings in new callers from all over India everyday at the afa office. "The reasons for this are awareness, loosening of criteria, and people migrating for help," says Dr Vibha Krishnamurthy, founder of Ummeed Clinic, Mumbai, where she meets over 50 autistic children every week.

    "When a special educator diagnosed my second son with autism at age two in 1999, the first thing that flashed in my mind was the movie, Rain Man," says Shubhangi Vaidya, a schoolteacher then working in Jaipur. The film is about an autistic savant (Dustin Hoffman) who wins the affections of his brother (Tom Cruise). However, for Shubhangi living in Jaipur, Hollywood and this happy ending were too distant and unreal. "What I needed to know first was what this meant for Vishu and us, as a family."

    Understanding autism is difficult for any parent. Shubhangi's insights into autism came from years of taking care of her son. But Vishu is only mildly affected—he can control his behaviour, communicate and may be accepted as 'normal'. He could well be in one of Delhi's posh schools' special ed classes if his parents shell out Rs 12,000 every month. Instead, Vishu goes to Open Door, a pay-as-you-can model school that provides the individualised learning programmes needed by autistic students.

    Doctors say that a particular tragedy is that most regular schools in India reject or sequester autistic children.Even Deepak who dazzles teachers with his brilliance, and is always first in studies, got placed in special-ed because he lacked social skills. He would suddenly lie down during lessons or leave midway without permission. Yet, things are changing. Says Geet Oberoi, special educator at Orkids: "At Bluebells, Delhi, which isn't a fancy school, they allowed me to attend class with my student and that's how you evolve an integrated system."

    The journey to adulthood adds more complications. Says Soni's mother, Mina Oswal: "Hormonal changes at puberty made Soni's skin so hypersensitive that wearing cotton underclothes and sanitary pads caused her such trauma that she'd tear them off. She went through unbelievable distress. This also reminded me to make her keep a 'one-arm' distance with everyone, even her father and me. It's for her own good."

    In Nikhil's case, when he turned 16, his mother explained the facts of life. All was well, till Nikhil touched himself one day in front of his mother and others. Stopping him as soon as she saw this, she told him to find a private place. Nowadays, when he spends a long time in the bathroom, she doesn't disturb him nor does she ask questions. She believes autism does not mean Nikhil should be deprived of his sexual instincts. And for Nikhil to be able to mind his privacy is a giant achievement, since privacy is an alien concept for autistic people. That's why Nikhil's improvements give hope to Vishu, Aditya and Deepak's parents.

    As for Vishu, when we photographed him recently, he screeched with joy every time he saw the camera focus on him. But we did not see him during Ashwin, the Diwali month that terrifies him. When the sound of bursting crackers torture his sensitive eardrums and make him scream in agony. Some days ago, when Deepak came home with bloody cheeks after being punched by school bullies, it didn't hurt too badly, for Deepak is back in the regular class. Aditya, now 10, called his mother 'Amma' for the first time in his life last Sunday. Witnessing their kids make such amazing progress is more than good enough for these parents now. And tomorrow? Even if these kids regress to their old selves, their parents will still sing their anthem, We shall overcome, the heart-rending hymn of the hopeful.

    (Some identities have been changed to protect the children)

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