Saturday, April 26, 2014

Sonu and Shilpa, a Story for Autism Month: In BL Ink This Week

Picture courtesy: Dr Shilpa Rao

April is Autism Month. I met Dr Shilpa Rao, a mother with an autistic son recently, and wrote their story for The Hindu Business Line's Saturday magazine BL Ink. Read it here or see below.


April is Autism Month, a mother shares her story of helping her son embrace his uniqueness

“Dear Shilpa The egg curry was very good and it was very tasty that egg curry was nice and thank you for the lunch with egg curry and I love you Shilpa from dear Sonu.” (sic)

Inspired by the movie The Lunchbox, Sonu (or Shubham) wrote this letter to his mother, Dr Shilpa Rao. She saves a photo of it on her phone. The letter itself is elsewhere, as is Sonu, who isn’t currently at home in their apartment block that faces a forest in east Bangalore.

He is the one who keeps their home extremely tidy, his shoes and his mother’s slippers are all neatly lined up. Sonu is away at ‘Empower’ camp, somewhere in the hills near Mumbai, learning life skills, amongst people he has never met before. He won’t be able to talk to his mother for the next 10 days. Another milestone for both of them. Theirs seems like a partnership, each holding on to the other, each letting the other fly and soar.

Sonu was diagnosed with Autism Spectrum Disorder (ASD) when he was 18 months old. Born at 25 weeks, weighing under 900 grams, it took many months before he began to breathe by himself. When he did not begin to respond to his name or recognise family, doctors pegged it on delayed milestones. But Rao, a paediatrician herself, knew it wasn’t just that. “I got on to Google and searched some symptoms. That’s when the word ‘autism’ came up,” she says, adding that her journey began in that moment. A journey that would prove to be, and remains, a hard one — albeit wrought with laughter and inspiration.

Rao remained in denial for a while — “I didn’t want to read anything about a condition that has no cure” — but, soon, perhaps, the doctor in her came to the fore. It was four years before he spoke his first word, six-and-a-half before he formed a sentence. Now 13, he goes to Class VI at an open school, equivalent to Class VIII in a typical school. Acceptance from teachers and classmates hasn’t come easy, but she is sceptical about special schools, where “children are in a place where they aren’t interested in each other. In a regular school, he has to talk, he has to protect himself, that enriching environment is required,” she believes.

Her main challenge has been to make others understand that Sonu is different. “If a child is in a wheelchair or has Down’s syndrome, the problem is visible. But the inability to communicate, to have social interactions, is also a problem. Autism has to be treated like any other physical disability and those living with it shouldn’t be denied regular education,” she says.

Rao’s intrepidity, and the way she is raising Sonu spring from rejection. He was shunned for not being ‘normal’, not the sort her ex-husband and his parents thought could be a grandson befitting their medical degrees and the fancy nursing home they owned. “Being doctors they did not have the sensibility to accept his condition. That rejection was what propelled me to work with him. Sonu has made me stronger,” she says.

He understands that his family unit is different, as is his life; he even tells Rao to remarry. Electric switches are still an obsession, but he no longer covers his ears before the TV. He isn’t an autistic savant, but is great with English and spellings, though he takes longer to learn something compared to others. He is now working towards making friends and recognising the idea of community.

The lack of awareness among people, glaringly so among doctors, is a daily battle Rao and Sonu face. “It was very hard to convince schools to take him in. Even when I volunteered to hold a free awareness session for teachers at a top school, they weren’t interested. Most people are not sensitive enough to want to help,” she says. Rao has been giving him the special education he needs, following a prescribed format. He has never done art therapy, yoga therapy or suchlike.

Rao says she succeeded in making him what he is because of early intervention and thanks to the wholehearted support of her parents and sisters. “Losing my mother to cancer two years ago was a huge setback for both of us, she was my tonic. But then, nothing lasts forever, life moves on,” she says with a smile. Moving on in life, she now works with autistic children at her clinic. Sonu comes back from school, lets himself in and doesn’t open the door for anyone except his mother, who returns at 7.30 pm.

As life moves along, by age 21, Sonu plans to drive a Jaguar XF, go to a big office where he is the boss and where people bring him documents to sign. An aeroplane would drop Rao off to her clinic. Later, he would have a beautiful wife called Natasha (“where did that come from?” wonders Rao) and children whom he would sit down with and teach, like Rao does with him. She smiles at his imagination, and must mentally be counting it as another of Sonu’s milestones.

Deepa Bhasthi is a Bangalore-based freelance writer

(This article was published on April 25, 2014)


Samuel Gnanadurai said...

Inspiring stuff Deepa. I first met an autistic child in one of the speical schools for mentally retarded children. He answered every question asked properly but seemed to be living in his own world. Did not for once face us. Has his parents got such awareness before may be he would have also lived normal lives.

Samuel Gnanadurai said...

And by the way Deepa, there is a Tamil movie called Haridas on autism. Nicely done one. Try seeing that.

Deepa Bhasthi said...

Thank you Sam. It is a pity how few people know about autism. Neither did I, much, before I started research for this story.

Will look that movie up, thank you.

sudhamarakini said...

touching article. first time i read about autism.

SHRESTA sachin said...

I read the article and was really touched by it. My son has symptoms of autism. can i have the contact details of Dr Shilpa Rao, so that i contact her and take her suggestions and implement that so that can help my child. Thanking You deepa madam