Make the world a little kinder for children on the spectrum and their parents
Do you have an autistic child? Or do you know parents of autistic children who suffer silently due to the social stigma that these special children are disabled? Well, for me, knowing that my soon-to-be five-year-old daughter was diagnosed with Autism Spectrum Disorder or ASD tore my whole life apart.
She was only one and a half years old when we got the diagnosis from the pediatrician. I walked out of the hospital feeling like all the air in my lungs had been sucked out. I was scared and was in distraught. My heart ached, and I wanted it all to be just a bad dream. It has been three years since this whirlwind journey began.
Autism Spectrum Disorder (ASD) is a developmental disorder characterized by obstacles in social communication and challenges in moderating everyday functional tasks (American Psychiatric Association, 2013).
Due to an increase in public awareness regarding ASD, more parents are actively seeking the help and support required for their children, creating an unprecedented demand for accurately assessing the needs of children with ASD, according to a research by Stoner & Angell, 2006.
Although the term autism was not alien to me as a journalist, as a mother I suffered trying to grasp and come to terms with it. I prayed hard, asking God if this was his way of punishing me. What did I do wrong? Why must my little girl have autism? I cried many nights, begging God to undo this. Make her all right.
I didn't go anywhere, avoided social functions and gatherings, and locked myself in the house for many months, unable to face anybody.
Then it hit me one day as I looked at my innocent and beautiful girl, Shardhana. There is nothing wrong with her. She is perfect in every possible way. There is nothing in the world I would change about her. I slowly began to accept fate. I wanted to know everything there was to know about autism. What would help? What therapies should she do? How would I get support? A lot of readings helped me understand that autism is not the end of the world.
We exhausted all our savings on her therapies, which cost us a bomb. But it didn't matter. All we wanted was to understand our girl and for her to make sense of her surroundings and communicate with us and others.
Apart from being non-verbal, Shardhana is said to have sensory issues where she is unable to sit down or be focused for a long time. She loves climbing on things and jumping, which are also the result of sensory seeking. With consistent therapies, she has improved a lot in a short period. There was always positive feedback from her therapists.
We have seen remarkable achievements in her. She has learned to read and write the alphabet and say numbers from one to ten, and she is a talented and imaginative girl. She loves drawing, especially birds, for which she has developed a strong affinity.
This may sound petty to a lot of people, comparing her with a normal five-year-old. But to us, it is a huge success and a milestone we pray for and work hard towards.
As a mother, Shardhana has taught me a lot of things about myself; she is the reason why I'm stronger, more confident, resilient, and empathic towards children and people who are special. She has nurtured a great amount of love in me and made me see the world differently.
My little girl is the sweetest little blessing from God. I enjoy watching her sing and dance to the beat of her drum. She laughs at probably nothing, but it brings me joy. I have seen her checking herself out in the mirror whenever she wears a pretty dress, swirling around happily like any other girl her age would do. I've caught her putting on my lipstick and mascara too.
As we work around teaching and improving her ability to do things independently, little did we know the real challenge was the people around us and their stigma towards autism. Some do not know what autism is, and some think it's a disability.
It was hard for us to explain and make them understand without judging my daughter. Many people are quick to point out that she is not normal and that she acts differently; some even advise us to seek medical treatment. After having to explain many times about her, at one point I just gave up; I now don't bother explaining to anyone anymore.
As an invisible disability and one that can incur unwarranted blame on the parents, it appears that autism certainly is stigmatised in both children and parents.
Why is this happening? Why are people so ignorant of the feelings and emotions of their parents? Is this how they are; always judging other people and making comments that are uncalled for?
Does our educational background have anything to do with this? These negative attitudes from families and friends might lead to parents feeling excluded and socially isolated. At the same time, because the behaviours of kids with ASD might be considered a nuisance in public spaces, some parents prefer to stay at home with their children, like us.
Therefore, the behaviors associated with ASD can lead to parental feelings of isolation and exclusion, which, in turn, can contribute to greater parental stress in caring for their child.
Fortunately for me, our parents and siblings are our greatest supporters; we have cried together, celebrated Shardhana's smallest achievements together, and they have supported and encouraged us to go above and beyond our abilities for her. Managing and caring for Shardhana is a lot easier with the support and encouragement of the people around you.
As I pen down my thoughts and emotions on World Autism Awareness Day, I hope and urge Malaysians to be a little more compassionate when they come across children who are a little different from neurotypical children. Smile at them, and show them that they need not be afraid of how the community will think and react towards them.
Malaysians have a long way to catch up in understanding what autism is. It may take a while for autism to be fully understood and accepted by society. In the meantime, we could play a part in making the world a little kinder towards these kids and their parents.