For most of us, there may be nothing more mundane than a bus ride to work. But for Bina Modak, the daily bus journey with her son, Satyajit, from their home in Dadar to Kshitij, a sheltered workshop in Opera House, is almost always eventful.
While Bina may have learnt to ignore the curious glances and stares her 20-year-old son receives, she still has to be careful about not upsetting any fellow passengers. “I try not to make him sit next to a young girl,” she says. “She may be startled to find a 20-year-old with a beard and moustache flapping his hands or jumping.”
Satyajit is autistic; his communication skills are severely impaired. He doesn’t speak very much, but indulges in repetitive behaviour like flapping his hands. Satyajit’s disability is difficult to define but it is debilitating, nonetheless. At first glance, he may look like any young adult his age but his disability is so profound that he will require a caretaker for life. It is to throw more light on this disability that has no single proven cause and no one “cure”, that April 2 is being marked as World Autism Awareness Day.
A spectrum of disorders
Autism is a developmental disorder of the brain which results in severe dysfunction in social interaction and communication. It is not one disease: instead, it is a part of a clutch of disorders that are called autism spectrum disorders. Autism is often, although not always, also associated with a degree of mental retardation.
“The main problem is that autistic children are within themselves and don’t know how to reach out to the world,” says paediatrician Dr PV Vaidyanathan. They also indulge in repetitive and unusual behaviour, such as arranging things in a particular way or going about their daily activities in precisely the same manner every day.
No single therapy is a cure for autism
There could be a number of possible causes of autism including a genetic mutation, the mother’s exposure to viruses and toxins during pregnancy or complications during childbirth but no single cause has been alienated. Often, young parents who have been told that their child is autistic, search in vain for a quick fix. “When the doctor told me it was autism, a lifelong disability, I thought you could do some operation and cure it,” says Alka Baghdadi, whose 20-year-old son Sahil, is autistic. Sometimes, as with Sahil, a child may be communicative and responsive up to the age of 3 or 4 and then regress into silence. “Sahil was going to a regular school in nursery,” says Alka. “He was picking up so fast that we thought we had a genius at home. But the teacher at the preschool said he was aloof and didn’t interact with other kids. Soon, he would say one line of a nursery rhyme but drop out the rest.”
As the years went by, the words became fewer and the silences grew longer. “We’ve done a lot to get back to the stage where he was communicating verbally,” says Alka. “He speaks a few words now.”
Growing old with autism
Although it remains just as difficult as it ever was for parents of autistic children to grapple with the nebulous nature of the disability, medical professionals and therapists have gained greater insight into the management of autism in recent years. Although there is still no single therapy that can cure the disability, a combination of behavioural and speech therapies, introduced while the child is still young — or “early intervention” in clinical terms — is believed to be beneficial in shaping the future behaviour of the child.
But where does that leave a generation of adults with autism, many of whom grew up when there was far less awareness about the condition? While special schools might benefit children with autism, what happens when they are no longer of school-going age?
When Jyoti Rao’s 41-year-old daughter Arundhati was diagnosed with autism a few decades ago, there was little understanding even among psychiatrists and physicians about the condition. “In Mumbai, all the schools were for the mentally handicapped, not for autistic children,” she says. “Even for the teachers it was very new.” But with the help of a few teachers and after much trial-and-error, Jyoti has been able to bring Arundhati to the point where she can look after most of her daily needs, and even manage her monthly period. “She is very, very methodical about her daily routine,” says Jyoti. “If she buys two pairs of clothes, she will discard two so that the number of clothes in her cupboard stays the same.”
Along the way, Arundhati discovered a passion for cross-stitch embroidery and now makes embroidered table mats, towels and picture frames. That may seem like an achievement for Arundhati, but Jyoti remains modest about the rewards of her hard labour. “Embroidery is her passion but it doesn’t help her in any way,” she says. “Each of those pieces is being sold for Rs 2-3,000 but she doesn’t know the value of that money.”
Fear of the future
Unlike in the West, there are no residential homes in India for persons with autism. In any case, Jyoti is vehemently opposed to the idea of sending her daughter to a mental institution. For her, as for Modak, the most effective way of dealing with the fear of the future has been to live firmly in the present. “I try not to think too much about the future,” says Modak. “You take each day as it comes.”