Autism
Merry Barua

Was Einstein autistic? Does Bill Gates have autism? If one goes by the reportage in Time Magazine and Newsweek the answer would be “Perhaps.” Autism is a disorder that by its very complexity and unusualness of manifestation appear to fire people's imagination. Lutyens was reported to have been on the autistic spectrum. But while all this speculation makes interesting print for the media, the complex difficult lives of those on the spectrum carry on, on its often-heartbreaking path.

“To watch your child, full of life and words, connected to the world around, playful and suuny, suddenly start losing words and withdrawing into an impenetrable glass bubble; I don't think there is anything to quite compare with the sense of aching loss,” say the Jains, watching the perfect little stranger who used to be their son. Who still is their dear and loved son, but not the one they had. This is a different child.

So do all children with autism lose their skills so dramatically? Not quite. “If I knew then when my son was born what I know now about autism, I would have started noticing the symptoms by the time he was a month old,” says Madhu of her son Priyo. “He never looked at me when I fed him, never smiled. He was just such a solemn baby. Solemn and self contained.”

Autism does not always creep up on you suddenly. It can be there right from day one like a familiar shadow that you do not notice. Till something or someone draws your attention to it. You realize when your sister comes visiting that her two year old is full of conversation: about Huey, Dewey and Louey, and the doberman in the next house, “Where is the dog's tail?” You notice your neighbour's little one who has down syndrome taking turns on the trampoline and playing ‘house house' with the other children. But your three year old just hangs around the fringes even though he seems to enjoy being around the other children. And instead of playing with them he often goes and pushes them and seems excited when a child starts to cry. You begin to notice that though your beautiful son knows all the jingles on the television and more nursery rhymes than you can count, he has never called you “Mama” to draw your attention. It begins to dawn on you that he does not play with his toys quite the way most other children do.

And then you either try to find reasons to justify your child's somewhat odd behaviour, or you accept that there is something amiss and start the rounds of specialists.

Like cerebral palsy (commonly referred to as “spastic”), or mental retardation, autism is also a developmental disability. Humans follow certain rules in the way they grow and develop in the hours, days, months, and years, after birth. In children with mental retardation there is a global delay in this developmental progress. In children with cerebral palsy there may be global delay if there is associated mental retardation, but there is also specific delay in motor skills, and posture, balance and movement are disorganized.

But when a child has autism there is a perplexing unevenness in skill development with deficits in certain areas – most frequently in their ability to communicate and relate to others – and distinct skills in other areas. Two year old Shashank is adept at completing complex jigsaw puzzles, can boot and play games on the computer, but is not able to tell his mother that he is thirsty in any way except by taking her arm like an object and placing it on a water jug. If not fed at mealtimes he will stay without food. It would not occur to him to ask in any manner for something to eat. Rohit at three can dexterously take apart and put together household gadgets, is able to wash, bathe, and feed himself, but not able to hold a pencil to write. And three weeks after eleven year old Angad learnt the concept of addition he was able to multiply two two-digit numbers untaught. Angad cannot button his shirt, tie his shoelaces, turn a key in a lock, or answer the telephone.

Autism affects the way the brain processes information, and prevents individuals from properly understanding what they see, hear, and otherwise sense, resulting in difficulties in social relationships, communication, and behaviour. Persons with autism have to learn normal patterns of communication and ways to relate to people; unlike those of us without autism who learn this naturally, as a part of our normal developmental process. About fifty percent of individuals with autism do not use speech to communicate, though they may have the physical ability to speak.

A person is born with autism, though in some the manifestation may be as late as 18 to 30 months, but not later. For many years it was believed that autism was caused by bad parenting, thereby adding to the woes of a family already dealing with a difficult diagnosis. It has been very definitely established that autism is a brain disorder and that nothing in the psychological environment causes a person to have autism.

So what causes autism?

In the last few years the world has seen a sharp increase in autism in the population and India is no exception to this. Various factors – the vaccines given to children notably the mumps, measles and rubella (MMR) vaccine; Thimesrol, a mercury based preservative; other environmental factors - have been cited as the cause though the jury is still out. What is certain is that there are no psychological factors in the environment that cause autism, such as poor parenting or working mothers. What is known is that autism may result from a combination of causes.

Dealing with the knowledge that your child has a lifelong disability can be a hard blow to deal with. What makes things harder is that children with autism look so ‘normal.' In fact most tend to be very attractive babies who appear like just any other child – only somewhat ‘spoilt' and ‘willful'. As a result, families have to constantly deal with the criticism of poor parenting; a notion they are helpless to change.

In India, there is still a significant belief in parents regarding autism being a Western disorder, and that persons with autism are hopeless cases best forgotten. None of this is true of course. All children with disabilities can progress with appropriate early support. For children with autism spectrum disorders (ASDs), if the intervention is started very early, progress can be significant and children can indeed be mainstreamed.

In India however, services available to persons on the spectrum are severely restricted. Most children do not receive a diagnosis, and when they finally do, there may not be educational services available, or what is available might be quite inappropriate. This is largely due to the lack of sufficient professionals trained to support persons with autism, either in special needs or in mainstream schools. Most children with ASDs are currently at home without any services. Some high functioning children are in mainstream schools. Of the latter, the vast majority drops out by the time they reach the third or fourth grade. This is due to a number of reasons. One is that many have learning styles that are different from the norm and while they appear to have grasped various concepts they may actually fail to generalize that learning without appropriate teaching. Or their impaired skills at social interaction make them the target of bullies, or lead to inappropriate handling by inadequately trained staff, which in turn is followed by stressful situations from which the child either has to be withdrawn, or is asked to be taken out from the school.

Of course there are the exceptions. Many at the absolute soft end of the spectrum who get by, continue their education, and lead inclusive lives. But they are really the exceptions rather than the rule.

Given the number of persons with autism that are out there in the community, even if they all received timely diagnosis, there will not be enough services for them even ten years from now. Therefore the only way to strengthen the autism community is to empower parents. That is why the focus of AFA's activities is to demystify the belief that only a professional can possess the knowledge and skills for intervention and teaching.

In addition, with the accessibility of information over the Internet, and poor availability of educational placements, more and more parents are homeschooling their children. This is a trend that we believe will become more prevalent.

On a positive note, years of advocacy and awareness creation have led to many positive changes. For one there is far greater awareness of autism. More pediatricians are screening children with autism. The mean age of diagnosis is dipping, though slowly. Educationally, while in 1994 Open Door at AFA was the only school specializing in

Autism spectrum disorders, in the last few years a number of others have come up around the country. Of these, there are at least two in Kolkata, two in Mumbai, one in Goa, one in Chennai, two in Delhi and one in Bangalore, and perhaps more elsewhere. A slow but steady progress. After several years of campaigning by AFA, the Rehabilitation Council of India has finally acknowledged that autism requires specific teaching methods and a Diploma Course for teachers is finally being put in place. And of course a major success was the passage of the National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation, and Multiple Disabilities Act, which for the first time officially acknowledged the existence of autism as a specific disorder.

Around seven years ago AFA started its campaign to include autism in the list of disabilities in the Persons with Disabilities Equal Opportunities, Protection of Rights, and Full Participation Act. That is a job that remains to be completed. Now is perhaps the time to push for its completion.

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