The birth of a son in an Indian family has traditionally been a cause of celebration. Greater awareness and cross-cultural impact in recent times have no doubt brought about a noticeable change, yet a bias towards the son still remains. The celebrations after the birth of Raja followed the traditional pattern. He was the second child after an elder sibling. For us, our family became a complete and ideal unit and the whole clan was thrilled.
Raja’s infancy was as smooth as anyone could have hoped and it was one of the most wonderful experiences for us to see him grow. He crossed all milestones with ease and kept all of us busy with his pranks. No one complained. A delayed milestone to speak soon after he turned two was a reason for worry but not panic. It came only when we looked for medical intervention. The day we visited a pediatrician we never knew that we had embarked upon a journey, a journey which may or may not end in our lifetime.
It was the year 1993. We lived in Mumbai, a place supposedly more developed and more modern than many Indian cities. Yet the answer to Raja’s delayed speech was not readily available. We consulted pediatricians, neurologists, ENT (ear, nose and throat) specialists, speech and communication experts and so on. We were constantly on the search. The options were slowly getting restricted. It was quite a while before a chance referral to a special school resulted in Raja's diagnosis as a child with autism. We understood neither its meaning nor its implications. There was no one to tell us where to go, what to do and what remedial action to take. The only professional opinion we received at the special school was that it is a lifelong disability and the only hope was to try out therapies to make him self-reliant. The mercy of God was the other available option.
The verdict was difficult to accept. It was equally frustrating to wait and watch. We were shattered.
The days that followed were the toughest of our lives. Most of our time centered around Raja. I was unable to focus on my job. Tears never stopped rolling from my wife’s eyes. For Raja’s 6-year-old elder sibling, the situation was traumatic. She never spoke out, but her silence was loud enough. Perhaps she lost much of her childhood as a consequence.
Raja was non-verbal and extremely hyperactive. His responses to all social norms were in contrast to what others did and appeared to be in open defiance. He never did what we wanted him to do and was lost in a world of his own. He loved to play with strange objects and had his own code of conduct. We thought of self-learning and started reading, browsing the internet for hours for clues. There was plenty of information. The word 'autism' was slowly making sense to us. We could not gather any known family history to conclude if it was a genetic issue. Our neighbors were sympathetic, but their curious glances embarrassed us. We had to curtail our social activities. For us Raja became everything. After all, he was our God-gifted special child.
Society at large appeared to be insensitive to autistic individuals. The schools refused to admit them despite a national law. The airline companies challenged their air travel under the cover of an archaic aviation rule. There were hardly any special schools professionally equipped to take charge. The cost of private care was prohibitive. Autism was not recognized as a specific disability, and there was no sensitivity. Indian society branded autistic individuals under a generic term, “mentally challenged.”
Prayers and faith became our way of life. The diversity of Indian Gods and Goddesses and their innumerable places of worship made us travel to as many places as we could. Suggestions were plenty and we had little choice of ignoring them. A meeting with a group of parents of children with autism made us aware of the ground reality. We took upon ourselves the task of rehabilitating Raja. There was a lot to learn from these parents. We were all in the same boat but they had made more trips than us. Shared experience with them added value. We learned about the severity of the impact of autism in society and the worldwide concern. We also learned about the research being conducted in the western countries and the social and political sensitivity to the issue. In India, it was all a fairytale story to us since we had no access to any of it.
What haunted us the most was Raja’s future. Indian society was clearly showing signs of drifting from the joint family structure. In many cases it was complete while many were in the pipeline. It required no great wisdom for anyone to visualize the future Indian family structure becoming sub-nuclear. How does a person with autism survive when the parents are no more? Can the prevailing social security system address their needs adequately? There were hardly any authentic answers to these and several other questions. Often the answers were inconclusive and hazy.
We finally got an answer. We were convinced that it is the parents who can bring about a change. The desire was to create a society which is adequately sensitized, with which a person with autism would be able to connect. The road map to reach that goal was difficult to draw. We trusted in the age old saying that without a dream nothing becomes a reality.
We moved away from Mumbai to our native place, Bhubaneswar, a sleepy town located in the eastern part of the country. Bhubaneswar was relatively underdeveloped but we relied on our roots. Moreover such places needed more help and support. We succeeded in contacting a few parents, convinced them of the need to set up a specialized centre for autism in Bhubaneswar itself and a beginning was made. Centre for Autism Therapy, Counselling and Help (CATCH) was born out of a shared vision that we and the other parents had to create a better world for our children and help many others who may join us en route. The hurdles were many. There was no place to start with. There were no professionals to deal with autism. Society in general was completely unaware of autism and its impact. Finally, there was very little money. Our capital base consisted of pooled resources drawn from our meager family incomes. The biggest strength for us was our determination.
CATCH started off with only four children, no fanfare, and no publicity but a few focused little steps. For every constraint we looked for and found an answer. Some decisions had to be deferred while some were to be implemented. The parents changed roles to become professionals drawing upon the inputs available on the internet, participation in workshops, in-house trainings with external resource persons, and so on. The struggle started yielding results, and improvements in every child became visible.
Seven years down the line with almost twenty children, CATCH has crossed a few milestones. There is a more sensitized society today than there was a few years ago and people in Bhubaneswar know what World Autism Awareness Day is. On the sidelines, the motley group of members of CATCH are in a continuous struggle to create a better world for their children in a remote geographical corner of the globe. The work so far is nowhere near the vision of an integrated unit equipped to provide diagnosis, rehabilitation and lifelong care and shelter, yet the enthusiasm has not lost any of its sheen. Every morning when we step out to remove our stumbling blocks one can see Raja and his friends waving at us, their bright innocent eyes and expressionless faces conveying a silent message: “there is light at the end of the tunnel.”
Pradipta K. Jena
Founder, Centre for Autism Therapy, Counselling and Help (CATCH)
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.