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OP-ED: The invisible disability

  • Published at 05:53 pm April 2nd, 2021
autism

What it means to raise a child with autism


As per Wikipedia, World Autism Awareness Day is an internationally recognized day on April 2 every year, encouraging us to take measures to raise awareness about people with autistic spectrum disorders, including autism and Asperger syndrome, throughout the world. I never knew the existence of any such day prior to the autism diagnosis of my son. 

I guess that is how things go. We are not bothered about things that do not affect us. I was no different. However, since the diagnosis, every day is Autism Awareness Day for me now.

I have a five-year-old non-verbal son with autism. Like any five-year-old, he is silly and smart. He loves cuddling, playing on the swings, and going out for walks. However, in reality, he has never made a friend. He has never played with other kids. 

His disability does not have a face, and is not fatal. He will live like any of us, but perhaps he will never be able to live on his own. Autism can be really terrifying, beautiful, humorous, and sad. Our worlds are very different from the normal lives of most people. Like us, many other families are living in this world which is alien to the rest of you. 

Our children are the faces of invisible disabilities. Disabilities that cannot be seen with naked eyes but observed in behaviour. 

It used to be that children with disabilities were a shame. They were hidden and not discussed. But hte times are changing and so is the scenario. Today, people are aware of autism and to some extent also willing to let us enter their worlds as well.

Now most people ask me: What is autism? Are children with autism deaf, and is that what makes them mute as well? Are they mentally challenged? Or the most frequently asked question: Where did I go wrong that made my child autistic? 

So let me address all these misconceptions. Autism, or autism spectrum disorder (ASD), refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviours, speech and non-verbal communication. 

As per sources, in Bangladesh almost 2 in 1,000 children have been suffering from ASD wherein, the urban prevalence is higher than the rural areas. Usually, all symptoms of ASD appear between 18 to 36 months of age. 

It is possible for a perfectly developing child to regress and lose all his/her developments before the age of three in case of autism. This is what the definition of autism states. But to really comprehend what autism really is you need to have a peek into our world.

In our worlds, our children are not labelled. They are neither autistic nor disabled. They are simply our beloved sons or daughters whom we love. Our lives are filled with uncertainties and fears. There have been so many sleepless nights that I have spent worrying about his future and life. 

I feel so scared of dying before my son that there are times I break down. I worry about who will take care of him and love him in my absence. 

Who will understand his unspoken needs like I do? How will I take care of him when I get old? There have been so many days when tears have rolled down my cheeks without me even realizing. 

I have imagined my son’s voice and heard it so vividly in my dreams so many times -- it feels so real. Sometimes, when I see him going through a book just like any five-year-old, I just try to imagine what he must be thinking. Does he understand the words? Or maybe he can read? 

As I go near him, he just runs away throwing the book, leaving me perplexed. Autism has robbed us of so many things. We do not know the joy of milestones and special moments. I still sometimes mourn the little boy I imagined when I was pregnant. 

The boy who would call me Ma, the boy I would have taken out for lunch and play dates, and the boy I would have shared my bedtime stories with. 

I have seen my boy experience severe meltdowns and I have felt the cold stares of people judging my motherly capabilities too. I can tell tell I have been advised, judged, shunned, and blamed several times over the last five years and now I feel numb. My son’s autism has impacted every aspect of my life: My relationships, my friendships, and my career. 

It has turned me into an advocate, an educator, a therapist, a nurse, and a fighter -- everything that I did not want. However, it taught me unconditional love. The little boy that snuggles into my arms every now and then with a hearty smile may be autistic to the world, but is perfect for me. He is much more than the labels the world has put around him. 

He is a bundle of joy and an ocean of love. This little being has given me a voice that belongs to him to remove the stigma around his disability. 

Our children are beyond their frailties, and they will no longer remain invisible for the world. 

Farahnaz Zarrin is a working mother of two.

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