Other parents admire us. We’ve toughened up. We’ve had to. Our day can begin at 4 am or 9 am, depending on when Shravan gets up. From that moment on, life is a full-on sprint, with emotions kept at an arm’s length.
At the age of 3, Shravan, our only son, was diagnosed with severe autism and multiple disabilities. It changed our whole perspective on life as parents.
There was always something oddly worrying about Shravan – even at 9 months, he was not doing the regular coo-ing or babbling like other infants. He was never interested in saying ‘mama’ or ‘dadda’.
There were times when he would not look directly into our eyes, and he did not like being touched too often. Initially, we thought it was okay, that boys develop a lot slower than girls – but in the back of our minds, we knew something just wasn’t right.
The diagnosis was earth-shattering. Like all parents in such a situation, we were emotionally broken, overwhelmed, filled with stress, and isolated – only, we recovered much faster. It didn’t happen overnight and it wasn’t easy, but we had to take stock of the situation and find solutions.
1 in 68 kids around the world have been identified as having autism spectrum disorder. Sixty-five years since the first known case in the world, and we are still nowhere near developing a cure, or even understanding why exactly the disorder happens.
My Journey Of Struggles and Triumphs
Shravan is 17-years-old today.
My husband, Ravi, and my initial years with our son were engulfed in utter helplessness; we were angry, scared, and uncertain about the future. But the diagnosis taught me patience of an altogether different level, and I came to accept the condition. It changed our perspective towards everything in life. Nothing seems unachievable or difficult or not worth fighting for.
Autism humbles you.
We’ve seen our boy struggling daily with life and holding on to his million dollar smile in spite of all the challenges. People stare at him, call him names and all that is so difficult to explain to him. What parent of a child with autism hasn’t had one of those moments in public? Your child is screaming, spinning or making noises, and you’re at the receiving end of disapproving stares and outright hostility from the public.
Having a child with autism affects the whole family. The extended family often wondered why it happened to us. It has been so difficult for grandparents to understand that it’s not about speech, but about communication. Shravan can communicate with his eyes, body, and soul – and I love every minute of it.
The Stigma – When All Eyes Are On You
Stigma is born out of culture, so it may look different whether you are in Mumbai or Madrid. But stigma never kept us from pursuing his schooling, or treatment, or travelling the world with him.
In fact, within some time, we were thankful for his diagnosis – without that, he would’ve bounced from doctor to doctor and each day would’ve slowed his learning further. Our struggle with his schooling and therapy, which is far from optimum the way you would like it, continues.
Would I have been happier with a child without autism? Strangely, I would have lost out on millions of daily miracles that God has blessed me with. Yes, I want him to be independent and I am working at it. The future is scary. We don’t know how and whom he would live with after we are gone. We also need a huge corpus in place for him for that.
But thanks to the parent support group and our friends at the Forum For Autism, which we joined when Shravan was diagnosed, we have found a huge support structure we can count on as family.
About Autism
According to the Center for Disease Control and Prevention, about 1 in 68 people have autism and the overall incidence of autism is believed to be consistent around the globe .
This means that there are over 18 million people with autism in India (which is the population of Mumbai). This also means that every one of us has come across at least one person with autism in our lives – but we never realised he or she had autism.
If you know a child who:
Avoids giving eye-contact
Prefers to be alone
Tends to repeat what is said to him or her
Has unusual body movements, e.g. hand-flicking or hand twisting, etc.
Has an excessive need for sameness or routine
Has extreme fears of sights, sounds, etc.
Has delayed language development
It could be autism.
Please guide the parent to a developmental pediatrician, a pediatric neurologist or the Forum For Autism, which has touched the lives of more than 5000 families in the spectrum in the last 16 years.
Watch: Cricket commentator Harsha Bhogle, a passionate supporter of autism awareness sheds light on the disorder
We trustees are predominantly a bunch of mothers who have learnt how to handle daily situations from each other and live with the common dream of setting up a residential home for children with autism, where they can be cared for long after we are gone.
(Chitra Iyer is the mother of a very happy 17 year old Shravan who has autism and cerebral palsy. She is the Trustee and treasurer of Forum for Autism. Being a Certified Financial Planner she helps families with their wealth management in her role as COO and Financial Coach at My Financial Advisor.)
(This piece was originally published on 2 April 2016. It is being republished to mark World Autism Day on 2 April 2018.)
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