Listening to their silences: Interview with Nandini Santhanam on autistic learning

Nandini: My mother was schizophrenic. My father worked for the Reserve Bank. Following his retirement, they came down to Chennai. At the age of sixty-seven, he had severe seizures lasting many days. Doctors brought him around but he suffered memory loss and was diagnosed with autism. It was most unusual.

His entire character and temperament, his very perspective was transformed. So, autism became my calling. After my father’s diagnosis, my parents lived a rich and fulfilling life for fourteen years, managing what was most important to them. I happen to be an only child.

I started to observe that my parents were now living a far more independent life (following my father’s autism diagnosis) than when my father was still in service. I found this most interesting.

I don’t know. It was their process entirely and it liberated me from any day-to-day caregiving. They got to know their neighbours, made friends and supported each other. This was very effective socially. They had one group of friends to walk with, another group to discuss their ailments or go to the hospital with.

I was drawn to autism, to people with autism. This was back in 1994. I had never heard of the term prior to that. I started to train in the field. I used to work broadly in the area of technology. I now decided to pursue psychology. I felt that would give me an insight into autism. I completed a masters in the subject and followed it up with some training in special education.

I had different options open to me. I could, for instance, work with children who had learning disabilities or were autistic. Eventually, I ended up working for We-Excel, an educational trust based in Chennai committed to helping people with special needs. I was with them for ten years, heading their remedial unit. I would meet three to five sets of parents every day.

These meetings gave rise to a lot of questions within me. What were we doing with human beings? We were teaching them to write, read, learn. But we didn’t know what the students knew. We were merely teaching the children the tools and the methods that would allow them to fit in!

I gave up my job at We-Excel and set up The Lotus Foundation. I discarded everything I knew. Life became beautiful after that. My head was full of new ideas, questions and thoughts. Why was autism so prevalent now? We had always known ‘slow’ people but autism wasn’t about that because these kids were very smart. So, I decided to specialise in autism.

I wrote up a whole new curriculum that would suit my needs. For eight years, I didn’t talk to anybody about it. Two years ago, I submitted this curriculum for a conference in which I was required to make a presentation. It was published. My mentor and co-founder, Vijay, has travelled all over India, lecturing and conducting workshops, on new ways of looking at autism.

I did not have a theory I was trying to prove. I was just asking for answers. Why is the spirit or consciousness so deep, so hidden? If your consciousness and mine are the same, why are you and I not alike? I came to this beautiful idea called law of attraction: like attracts like. I applied that to what I knew about autism.

I found that at a deep level, these children and I are alike—at the deepest spiritual level. But we have a different exterior. Then I began to ask questions about pre-birth intentions. What happens when you decide to be an autistic person, when you decide to choose this life?

That gave me a lot of answers. All of us want something. We want to do something. We basically want to be happy with who we are. If our only purpose is to be happy as this person, you can be happy. These days we discard old technology for new; the same thing happens to humans too. We go out of this world and come back to it.

We shed our old bodies; we upgrade ourselves. These children can speak but have decided not to. They have chosen not to. What kind of vairagyam or destiny is that, to not speak at all, all your life? What drives these children to withhold speech? Are they not communicating? They are! What language are they using?

This question led me to try and communicate with them. I have, in the last two years, developed the skill to listen to their silences. This has come after a lot of inner work. It is no rocket science. This work has helped me make sense of the children’s inner lives. A child either gives me the permission to understand them or not. Teenagers with autism have some difficulty during puberty. They explain it to the world in their own way but the world doesn’t pay attention, doesn’t give them that time.

All that these children may require is a break, a day of silence, a day of no activity which too is a kind of activity. They may take time to transition. They may grow aggressive. We try to treat them with psychiatric drugs, we beat them up, we tie them up. We try to fit a beautiful round peg into a square hole. That doesn’t work.

The nature of autism is that it is not curable. How many ever years of therapy you give people with autism, it is you who has to change. Autistic people possess strong will. They wish to share with the world ideas of the highest nature, of sheer joy. Everybody is free to be who they are. If I could take the liberty to be who I am, wouldn’t that be the most beautiful thing? What is stopping me? It is only my thoughts.

(Excerpted from K. Srilata's book This Kind of Child, to mark Autistic Pride Day, 18 June)