A lesson on autism

written by B L Swee, a parent whose child is diagnosed with ASD (autistic spectrum disorder)

JY has been such a charming child. We were so taken by his good looks and funny behaviour that we never realised that something was very wrong with him. The biggest concern we had about him was the fact that he had no words. But this was easily dismissed by well-meaning people around us who assured us that they knew X, Y or Z who didn’t speak until 3 years old and then couldn’t stop talking for even a minute.

This was the beginning of our folly. We kept postponing the deadline we gave him for blurting his first word. Even as late as 22 months, we told ourselves we would consult a specialist only if he didn’t speak by his second birthday. It was as if magic would make him say his first word on the day itself.

It was not so much of denial than pure foolish ignorance that resulted in carelessness on our part. We were blind to all his tell-tale signs of autism as we did not know what autism is, nor did we ever bother to find out. We naively believed that this kind of thing could only happen to other people. We never thought it was a big deal that he was behaving so unusually:

1) he had not spoken a single word by his 18th month;

2) he did not even point or gesture to make up for his lack of speech;

3) he was totally uninterested in toys;

4) he was roaming around aimlessly most of the time;

5) he was mouthing and licking objects when there was no longer a good reason as he had already developed his full set of teeth;

6) he never waved goodbye to anyone.

7) he hardly responded when his name was called;

8) he had unusual interests in the most unlikely objects such as brushes, mops etc and would attempt to reach them at all costs;

9) he never attempted to show us something that interested him and

10) he was sometimes in deep thought with a faraway look.

We had simply assumed that it was a personality problem – that he was aloof and would open up to people when he was ready, on his own terms. We genuinely believed that JY was just going to be a late-talker.

Ironically, this is the problem that many parents face. We are a hundred times more alert to the symptoms of minor, short-term illness such as HFMD and, chicken pox than something devastating like autism which is a lifelong condition. The level of awareness amongst parents is pathetically and dangerously low for something that is widespread. (In the United States,  1 in 150 children has autism.)

How many of us really understand the purpose of sending our children for developmental check- ups? I certainly did not. I used to find it a chore to give the doctor all the answers to a checklist of milestones – I wondered why I had to pay him for merely putting ticks into the boxes. I saw the assessment as a mere scoring sheet to show how well my child was measuring up to the skills and abilities expected of a child his age. I used to think it was better to delay the assessment if he had not attained a certain skill yet. I never realised that it was a checkpoint for danger, to let us hold the bull by the horns should there be a problem.

It was a big misfortune that in our case, our family doctor thought little of developmental check-ups too. He probably thought it was more lucrative to see another 3 patients during the time he would have to read out the questions in the developmental checklist and then tick off the answers. When I asked him if we should do the assessment with JY at 18 months or hold it off, he told me not to bother if I didn’t feel there was anything wrong.

I honestly did not feel that was a problem with JY then, which set us back by another six months until he turned two. It was only then that the nagging feeling that something was not right plagued me. Yet, I could not quite pinpoint what exactly was wrong. I did not even know where to start searching on the Iinternet.It was not until we happened to meet up with a friend whose son had autism that a bell rang in our collective heads. We realised that JY shared too many similarities with my friend’s autistic son. That night, I came home with a heavy heart and I googled for “autism” on the Internet. The puzzles started to form a picture I was not ready for. The realisation came crashing down on me and I was awakened with a pain I would never forget. I already knew what to expect even before seeing the Child Developmental Specialist but when the diagnosis finally came out of her mouth, it still seemed so surreal.

For many parents like me, the date of diagnosis will always be imprinted in our minds. The day that made our lives change forever.

In sharing this, it is my earnest wish that many parents will be spared the same anguish, even if just a little. I hope with a keener sense of awareness about autism, more parents will keep a better lookout for things that truly matter. As long as there is a lingering doubt about a child’s developmental issues, parents should never wait but do a self-check on the Internet and seek consultation from a specialist as soon as possible.

Autism is not something that can be outgrown or wished away. This basic understanding is a crucial step all parents need to undertake as we brace ourselves to race against time and take on the enormous challenges ahead.