Redefining a Perfect Life: The Story of An Out and Proud Autism Mom

As I write this, autism has lived in my house for 14 years, 2 months and 3 days. Perhaps it lived here for longer, but I did not know of its existence. Maybe it was hiding under the bed, lurking in the corner behind the piano or huddled up in the loft. All I know is that one sunny, chilly January morning in 2008, autism made its appearance in our lives in the form of a diagnosis. A diagnosis given to my son Vir, to our family, which has changed the course of our lives.

Shortly after Vir’s diagnosis, I lived in a complete state of denial. ‘Such things don’t happen to families like ours,’ I thought. I kept justifying why Vir’s developmental pediatrician could be wrong, I kept making excuses for his limited speech, his fleeting eye contact, his preference for his own company rather than mine or his twin sisters. Slowly, I came to terms with my situation and realised that if I wanted to change his life, to teach him and make him a part of the neurotypical world, I would have to stop crying and start living. It was very hard at first. The slightest thing would set me off and I would be in a flood of tears. We also live in a society that loves and admires perfection, and this situation was far from perfect. But then I wondered what was perfect? Was I basing my idea of perfect on what society expected it to be? Or could I create my own perfect, my own ideal?

Armed with this belief I started working with Vir. Progress was slow, but it was happening. A deep spiritual faith, the support of a loving family, and a divine inner power that I am convinced we all possess, but only tend to realise when faced with extenuating circumstances, gave me hope and the strength to keep going. Once Vir was settled and doing better, I started working with other kids with autism to give back for all that I had been blessed with, and to help them reach their potential. For ten years, I worked as an autism interventionist with over 400 families, and each one taught me tremendous lessons. With every family I worked with, my resolve to help others became firmer. While I thought I was helping others, they were helping me come to terms with and truly accept my son’s condition. Over time, I came to appreciate him and love him exactly as he is. In fact, if you were to ask me today if I could exchange him for a neurotypical son, I would refuse because then he wouldn’t be the Vir I love so much.

But I knew that just working with kids on the autism spectrum was not enough. I wanted to make the world a kinder, more inclusive place for Vir and other people like him, in fact, for anyone who is different from the norm. This inspired me to write my story Beyond the Blue: Love, Life and Autism.

Beyond the Blue was a concept I had thought of many years ago. Writing was my first love. After working for 10 years within the autism intervention team, I realized that I was in a unique position: not only had I lived with autism, I has also acquired a lot of knowledge from working in the field. As a parent, I knew how it felt to receive the diagnosis, the initial years of struggle to find the right therapies, the wisdom of reaching a state of acceptance, and as a professional, I knew what kind of therapies and interventions worked with each unique challenge. Additionally, all the books I had read had a uniquely Western perspective – there was nothing from the Indian subcontinent that would address our cultural heritage, our societal norms, our familial structures and dynamic. All the literature that I read felt familiar in the experiences that the parents had had, and yet so alien because it existed in a completely different context.  So, I decided to combine my two roles, write from the perspective of an Indian parent living within the subcontinent, return to what I knew best – writing – and create a book for parents that would be relatable, realistic and above all, empowering and uplifting for them.

Since it came out in November 2020, Beyond the Blue has surpassed my expectations in terms of the varied audiences it has reached and spoken to. One reader wrote to me saying that although they knew it was supposed to be about autism, they felt that it was a great guide to dealing with any kind of adversity. Several readers have written in saying that it helped them deal with whatever difficult situations they were facing in their lives. Another wrote that they feel that not just parents of kids on the spectrum, or with any developmental disabilities, but everyone should read it, because it is about differences, and how to celebrate them, which is especially important given the increasingly polarized world we are living in.

Today, I see myself not just as an author, but as a neurodiversity consultant and parent advocate as well. I use every opportunity I get to speak to different people – schools, colleges, corporate organisations – about autism and neurodiversity, to raise awareness and build acceptance and belonging for people like Vir.

Fourteen years ago, when autism entered my house, all I could see was darkness, sorrow and pain. Today, the scenario has changed. There is joy, there is hope, there are opportunities and possibilities. The future looks bright for Vir, and so many others like him!

Gopika Kapoor is a writer, neurodiversity consultant and parent advocate. Her latest book, Beyond the Blue, is the first book by an Indian parent of a child with autism. She lives and works in Mumbai.

The views expressed are the author's own.

Suggested Reading:

Helping Children with Autism: How This Mother-Daughter Duo Is Tackling Challenges