A Mom’s Journey to Understand Autism

When I was pregnant with my second child, I noticed that my eldest son Isaac* behaved differently from other boys his age. He developed a peculiar habit of refusing to eat anything but “white food” such as fish, chicken and rice. Anything not within this colour code would be carefully segregated and removed from the bowl himself. Isaac rarely made eye contact and swiftly hid in any possible nook he could find when approached by a complete stranger. He kept to himself all the time and would be fixated on either one of his favourite things in the world; drawing, or the iPad. An attempt to separate Isaac from any of these activities is futile and will result in his random aggression.

He was a tiny child at two years old but the tantrums and separation anxiety bouts were of gigantic proportions. There was a point where we were removed by security at a mall because Isaac had one of his infamous screeching outbursts that invited condescending glares from onlookers. As a young working mother who had to handle Isaac single-handedly most of the time due to my husband’s work commitments, I did not know how to handle the unwanted attention.  Most of the time I would end up flustered and apologizing unnecessarily to irritated strangers, but behind closed doors I would vent this frustration by scolding and disciplining Isaac, which I very much regret.

Isaac became more distant after I had safely given birth to his sister, Nadia. He still spoke in gibberish when his third birthday approached, which worried me since many of his peers could form three-word sentences at the very least. My parents and in-laws reassured that I was over-thinking it and that Isaac’s is just going through “a phase” of insecurity from welcoming a new member of the family. My more experienced colleagues tell me that it’s normal for boys to speak later than girls – it was the law of the universe, they laughed. Play dates were agony for Isaac as he had trouble connecting with other toddlers and grew frustrated when they did not understand what he was saying.

When dealing with Isaac increasingly became a chore, my husband Sean and I would turn dismissive. I remember a saying, “People always fear what they don’t know”. When asked what is wrong with Isaac, we would prefer to sugar-coat things rather than waste time defending Isaac’s unusual demeanour.  Our default scripts include: “Ah he just woke up”, or “He’s just hungry” and “I did not get him the toy he wanted” which on most days, wasn’t that case at all. We wanted our child to seem normal to others and we simply could not fathom what Isaac wanted when he yelled, or screamed or kicked or rolled around for no apparent reason.

A visit to a new paediatrician immediately confirmed our worries and shed more light to our predicament. Dr Gina* highlighted her concerns for Isaac and suggested we do a short screening specifically on his developmental progress.

True enough, from simple question and answer sessions; observations of Isaac in his play mode, hearing tests, brain wave tests and many more with several specialists gathered inconclusive symptoms relating to autism spectrum disorder.

At the time, I thought I was dealing with a handicap and felt great concern for Isaac’s future, but I was clearly unprepared nor had any prior knowledge of such situation. This is a general term of growth disorder that is identified in children aged two years old onwards. The common misconception about autism is that it is a mental disease akin to dementia or an imbalance of chromosomes such as Down’s syndrome.

I was somewhat in denial when Dr.Gina initially referred us to numerous specialists and therapists to diagnose Isaac’s condition in detail. It was a slap in the face. All I could think of was repeatedly in my head, “Where did we go wrong?”

Autism, as we know it now two years down the road, is merely a mental condition that possesses underdeveloped cognitive traits such as lack of social interaction, communication skills (both verbal and non-verbal) as well as motor skills. Considering that this condition is more of a psychological matter, some children are untreated until reaching adulthood. Just like a flower or plant that blooms with nurturing, the same goes to a child’s intellectual, spiritual and emotional wellness. Left unabated and uncared for, distortions are bound to happen to their brainwaves.

There are varying degrees of autism that include Asperger’s, Pervasive Developmental Disorder-Not Otherwise specified (PDD-NOS) and “classic” autism that trigger intellectual regression, health issues such as sleep deprivation and gastrointestinal attacks.

Various research have indicated that autism is a combination of events in the early years of childhood, including mutation of genetics passed down from generation to generation, lack of oxygen and nutrition such as folic acid during pregnancy, food consumed by the child after weaning as well as unhealthy lifestyles or routines practiced from a young age. As yet, not one cause have directly been linked to this condition. Hence no one should be blamed for whom it afflicts, especially parents.

We were lucky that have had tremendous help in understanding autism by participating in early intervention programmes (EIP) organized by the Child Development Centre in UKM Medical Centre (PPUKM). Isaac now attends speech therapy on a weekly basis to increase his proficiency and occupational therapy to help him to gain the confidence he needs. I see a lot of improvement of late and I am very proud of his achievements that he has now become a happier, more focused child. Parents’ participation for each therapy session is mandatory because it is important to empathise with their child and understand how their mind works.

Even though some parts of the brain in children with autism are not fully developed, it is known that their focus on hobbies or interests become amplified. Legendary composer Wolfgang Amadeus Mozart, prolific writer Lewis Carroll and film director Tim Burton each possess autism spectrum disorder but are successful in their fields with the support of their parents and loved ones.

That, we hope would persist from our journey with Isaac’s world.

*name changed

About the Author:

Ms. Gwen M. Piah is a full-time working mom of two who juggles her responsibilities between teaching and parenting. The demands of raising a son with mild autism and adventurous, imaginative daughter have taught her to be resilient and more forgiving towards others who don’t understand children with special needs. Ms. Piah strives to break the stigma and clear common misunderstanding, not only about autism, but also about all special needs children in general.