My Journey with Autism in My Twilight Years

- Shishir Kant Misra -

This article was first published in the on line magazine ‘The Alternative’ dated April 17 2013.

Having been an alumnus of IIT Kharagpur, with a good job in an MNC; having gone around the world, followed by a successful stint in business; having two well-settled children and a cooperative and loving wife – life had seemed to be moving on a predictable path. I had just got my son married and had a second granddaughter through my daughter. What more could one ask for?

But, during the initial years of Roshnee, our second granddaughter, we started noticing something amiss, yet did not quite know what it was, until someone told us that she had autism.

Autism, what!? We had never heard of it! My daughter, a medical doctor, quietly set about managing her second daughter’s autism with whatever little resources were then available in Kolkata. Side by side, she tried to manage her own career, and bring up her first daughter. She found the going very tough, and soon realized it was a losing battle for all, but mostly affecting her first daughter.

So we grandparents moved in to take care of our granddaughter with autism. My wife and I took charge of Roshnee, while our daughter and her husband concentrated on their careers, and their first daughter who had started showing signs of brilliance.

We were quite impressed with Applied Behavioural Analysis (ABA), one of the oldest and most widely used interventions for autism. After some hits and misses, we zeroed in on some therapists who implemented the program. We have since stuck with it. This has proved to be a wise decision. Before that, we had tried to talk to some people who knew about autism. They had dismissed us, saying it was not for grandparents to handle a child with autism. We could only smile.

Some early lessons like being always in control, maintaining a relaxed and happy environment at home, helping the child to be compliant, and keeping her happy are paying rich dividends. It does not mean we did not face tantrums, melt-downs, or some extremely stressful situations.

I joined many parent support-groups to learn from the experience of other mothers. There were so many suggestions, which could overwhelm anyone. Information available online is so massive and so varied. However, we analyzed every suggestion minutely. We relied on our own instinct, and drew on our experience of bringing up our own two children. This helped us to look at many things rather rationally, instead of attributing all behavioural traits of the child to autism. Living with Roshnee, 24X7, we started understanding many things just by instinct.

Based on the evidence gathered till now, we do believe that autism is not a disease, although a webinar I attended recently did authoritatively assert that it is so. I still do not subscribe to that school of thought. We, therefore, have not gone for any medical treatment per se, whether allopathic, homeopathic, unani or ayurvedic.

We have made the strength of the child a tool to tackle her autism. As much as possible, we utilize her abundant energy to keep her engaged in some activity or the other – like dancing, singing, drawing, home skills, yoga, besides her schooling. After trying for three years we realized that dance was not her cup of tea, and discontinued it. Early on, we spotted her knack for music, and created opportunities for her to give stage performance. Today she has a repertoire of over twenty-five songs in Hindi, Bengali and English. Mind you, she still cannot initiate or sustain conversation in any language. Only lately, her language has started to develop. We use her strong visual ability to teach her many things.

We deciphered that she learns best in one-to-one situations, and hence mainstream or integrated schools went out of our radar. We refused to bring social pressure on ourselves on this account, and proudly told everyone that she went to a special school.

While at home, we do not leave her alone for long periods of time. We have gone against the advice of many, and give her little free time. We have taught her many home skills, which are required to lead an independent life. So at twelve she can arrange the utensils, take out clothes to the terrace for drying, and bring them back (all by herself, even operating the lift), fold them in separate piles and distribute them. She can thread a needle, sew a button, do embroidery, knead flour, roll a roti, and even make herself a toast! With the availability of an induction cook top, she is now learning to heat her own milk.

No, we have not tried a gluten-free casein-free (GFCF) diet!

We ensured that she changed from being a picky eater to eating everything – becoming someone who is willing to try new foods and tastes. She has developed a beautiful and aesthetic sense of choosing her dresses appropriately, and can totally independently take care of her personal hygiene and dressing.

We take care to inform everyone with whom we come in contact that our child has autism. Few people know what autism is, but somehow everybody seems to be accommodative. We did not, and do not, feel embarrassed or uncomfortable in public due to any behavioural issues of our child attributed to autism.

The mantra has been to take interest in doing what we are doing. We never blamed God, if there is one. It has been a tough life, but then whose life has not been tough? We generated enough passion to tackle the autism of our granddaughter. Today I can say with pride that the atmosphere in our house is totally relaxed. The child is happy. We are aware that there are still many peaks to conquer, many oceans to cross, and many targets to achieve. But at seventy, I feel energetic and confident enough that we will reach there, sooner than later. We are fully aware that autism is for life, it never goes away. But at the same time, we believe that with intensive intervention, and consistency in action the quality of life of Roshnee can be an asset rather than a liability for anyone who will ultimately have to take her under their wings.

Shishir Kant Misra is a Mechanical Engineer from IIT Kharagpur. He worked with an MNC and his job took him round the worl,d but he had not heard of Autism till his second granddaughter was diagnosed with the condition at 2-1/2. At 70 he and his supportive wife are involved 24X7 in day to day care, training and intervention of Roshnee, now 12 years old. He lives in Kolkata. A firm believer in ABA, he has presented papers on “Parents Perspective” in two ABA-India Annuals held in Delhi and Kolkata.

Shishir Kant Misra can be reached at eskaym@yahoo.com.
© Shishir K Mishra - Member WaaS