“People Believe That a Mother of an Autistic Child Has No Right to be Happy”

This article is part of our series ‘A Special Kind of Mother’ on mothers who have had to face greater challenges than the rest.

By Dr Ferdousi Begum

My husband Hossain and I are both doctors, so when our daughter Nuriya was born 17 years ago, we both knew something was wrong. She had a reddish lesion over her eyelid and nose, and concerned that it could be cancerous, we got her CT scan done. It turned out be hemangioma (an abnormal buildup of blood vessels), and we hoped that it would subside.

Over the next one year, however, I suspected Nuriya had autism, as she didn’t make eye contact and kept repeating words. But Hossain refused to accept it; he became sorrowful and it was left to me to stay strong and self-motivated.

I had always been a positive-spirited, fun-loving girl all through my school years in UAE and then through medical college in Czech Republic. Having moved to Dhaka to marry and raise a family, I was excited and confident about having my first child. But then, life threw this unexpected curve-ball at me.

At two, Nuriya was diagnosed with autism. Then began our new journey. It was very difficult to get her to tie her hair or wear certain kinds of clothes. Even potty-training took a long time. I never kept any helper because I couldn’t trust anyone to that extent – Nuriya is slightly verbal but she is incapable of alerting me to anyone’s ‘bad touch’. Till today I feed her myself.

As she reached puberty, her needs grew; I feel like I have two sets of periods every month – mine and hers! She is ignorant about menstrual blood and will even try to taste it if I am not watchful.

Getting her hair cut is another challenge. She prefers her dad to me in such situations, so I request ladies’ salons to allow my husband inside with her if there is no other customer around.

She has also become unexpectedly strong in her teens, and is violent when agitated. Sometimes, she throws a fit in public and people think I’m kidnapping her. She also senses other people’s animosity or negative feelings, and it agitates her further.

For this reason, we restrict outings to places where she only comes in contact with loving, understanding people, such as our own family and close friends.

We have enrolled her in the best school in Bangladesh for children with special needs. Over the years, we got into a routine: the three of us would leave home together in the morning, dropping Nuriya off at her school, and then going to our workplaces. But the COVID-19 lockdown has been a trying time.

It is important for me to take care of my own health and remain strong enough to take care of her. I stay cheerful and encourage my patients to be optimistic. But social judgement is relentless: even my joie de vivre bothers some folks – they believe that a mother of an autistic child has no right to be happy!

But I have stopped bothering about what people think – I dress up, I dress Nuriya up, I shop to indulge myself, and I ignore the expressions on people’s faces when Nuriya has a fit in public. I am no longer ashamed.

I feel that a woman can do more than a man. But when a family has a special child, all her motivation goes down. I am blessed to have a husband like Hossain, but I have seen fellow mothers suffer terrible hardship. In many cases, the husband deserts the woman, leaving her to raise the child herself. We chose not to have a second child, but mothers with two or more children are in precarious positions. Many take medication to keep depression at bay.

Life is definitely a struggle with an autistic child. We cannot sleep regular hours or at a long stretch, as Nuriya wants us to be awake if she is. She spends her time playing music but needs to be watched 24/7.

This takes a toll. I may put on a smiling face when I meet my patients at work but inside I am wretchedly tired all the time. I am hypertensive and I don’t know how far I can pull like this.

Even then, I feel it is my duty to motivate my fellow parents, to be a role model. And there is only one way to give them hope of happiness – by being happy myself.

First published in eShe’s June 2020 issue