A little history

Raiyan was born 6 and a half weeks premature on 2nd June 2003. Despite being born pre-term, syukur alhamdulillah, he was a healthy weight of 2.54kg, had no complications except for the slight jaundice and only stayed in the special care unit for half a day.

Because he was born 6 weeks earlier, we somehow automatically accepted from the start that he was going to be 6 weeks "slower" than his peers. And in a lot of ways he did. If I recall correctly, he was about 4 months when he really could hold his head up, he socially smiled and made considerable eye contact around that time too, walked at 13 months and the biggest delay of all, said his first word "turtle" at 26 months. And when we checked the "typical" milestones of other babies, apart from the talking bit, he was usually about right to be 6 weeks behind. Naturally, the speech part was very worrisome even though a lot of people just brushed it off by saying that it's normal as children develop at different rates from each other and since he was born premature, it would be logical to accept that he would be slow in talking too. We were repeatedly told to be patient, pray to the Almighty and in his own time when he is ready, Raiyan will start chatting away. Furthermore, apart from not being to able to talk, Raiyan seemed very normal otherwise. Very active, playful, was not afraid of other people, very affectionate and loved to cudle, had a very healthy appetite and generally did not look or seem any different from other babies his age.

As you know, our worries did not stop but instead just grew more. I specifically remember this one time after I was reading an article in Mother & Baby magazine about a mother finding out her son was autistic at 18 months, when he seemed perfectly "normal" before that. She described the experience as watching her son withdraw into his own separate world and in turn dissociated himself from everyone, including heartbreakingly, his own mother. One of the signals warned by the article was lack of eye contact and not responding to their name being called. Soon after putting the magazine down, I started calling Raiyan who was only 4 physical steps away. "Raiyan..", no response. Let's try again. "Raiyaaannn..." (in a sing-song tune) and yet again, na-da, no response. One more time, shall we? "Raiyannn..." (becoming slightly more impatient and panicky now) and yet, Raiyan did not turn towards me. After a few more times, I just went up to him and sat in front of him to which he finally looked up (yeah, yeah I know that doesn't count). I immediately called Jeff and sobbingly blurted out my strong suspicion that Raiyan is autistic. Since Raiyan was only 17 months at that time, and being the lovely, reassuring husband that my husband just is, he said to not worry as it is still too early to tell and we can't make assumptions just based on lack of eye contact.. Plus, maybe Raiyan was just really preoccupied with what he was doing at that moment I was calling out for him. Not knowing any better, I believed him and tried to put autism at the back of my mind. (It did linger around from time to time, mind you. The "uri" ness of women and especially mothers just entails such behaviour).

As I mentioned in my previous entry, Raiyan went to CDC for a year and sporadically a few times after that but no one ever mentioned even the possibility of him being autistic. We even brought him to a number of paeditricans who very confidently also ruled it out. This is precisely what I mean about the lack of awareness in Brunei because I think a lot of people just picture autistic people to be extremely unsociable and completely mute etc, which granted does happen in serious cases of autism. Raiyan is still a very friendly boy and he does know how to pronounce a lot of words which probably justifies the misdiagnosis. What we were not aware of and I'm sure this goes for a lot of people, is that autism spectrum disorder is a "spectrum" which means that autism ranges from the extreme worst to the mildly affected.

Another reason as to why we may have missed the signals was that we also took great comfort in Raiyan showing his intelligence in a lot of other ways and to us, this means progress. By the time he was 3 and a half, he was reading 6B of the Peter and Jane books, he could count up to 50, he had completely mastered the skills of using the computer, including playing games on the internet and searching for his favourite things on google, he could write out the whole alphabet and all the numbers and he can practically name every animal that exists or used to exist on this planet. This progress meant for us that there is improvement as time goes by and so with a little more patience (and again, with many assurances from others that he will be ok in time), we would eventually get to where we want Raiyan to be.

What is also confusing about autism is that some of its symptoms (which will be elaborated in separate entries later) can also be practised by "typical" children so it is easy and forgivable to mistake some of their traits to be mere quirky personality traits that us parents should not spend our energy worrying over. In Brunei also, we have a common term we use called "paingan" where a child would do a particular action repetitively but is generally considered harmless. Hence, it is easy to confuse repetitive behaviour, which is a common autistic trait to just be another "paingan." With Raiyan, what stood out for him was his anal and perfectionist behaviour in that he likes all things tidy, clean and organised. Because his father and grandmother are famously known for their impeccable organisational skills, we naturally mistook Raiyan's behaviour as an inheritance from them.

In the end, for reasons of:
  1. calculating his milestones later than normal because he was born pre-term (perhaps a tad too late!);
  2. completely relying on CDC and the paeditricians' opinions;
  3. listening to naive reassurances that Raiyan will eventually start speaking normally "just like this one kid they know" and;
  4. our subconscious denial about there being anything wrong with our son apart from having some harmless delay;

we regrettably diagnosed Raiyan to be autistic at four and half years old when the typical diagnosis time should be around 18 months, which ironically was how old Raiyan was when I read that Mother & Baby magazine.

I can understand that it is our culture to not cause parents unnecessary worry by telling them that there could be something wrong with their child at such a young age and uncertain time. This is also a natural thing to do as they do not have a better understanding and awareness of what autism is. But it is so important to detect autism as early on as possible as there is a better chance for them to be as normal as they can be if they started treatment earlier on. Sometimes I still feel like kicking myself for missing out 2 years of valuable therapy for Raiyan. But I didn't know any better right? That is why I hope the same mistake will not happen to any other parent who reads this. First and foremost, you as parents know your child BEST so if you have any suspicion that something seems wrong, JUST GO AND CHECK IT OUT. Read up the countless websites on autism and compare the symptoms listed with your child. You will be amazed with what you can learn. I know I was! And remember, because of the unfortunate lack of awareness of autism in Brunei, don't take others' words of reassurances wholeheartedly. They don't see your child every day so how are they supposed to make reliable conclusions right? This is realy crucial because the earlier you check it out and manage to get a proper diagnosis, then insyaAllah, your child can start his road to recovery sooner rather than later.


Ian Hamilton said...

You are so right about his father's obsessive organisational skills - I had to work with him for 4 years!
Your blog is beautifully written, and reflects great personal courage - it must be a great inspiration for other parents trying to come to term with their children's autism.
With All our Love and Best Wishes
Ian and Jean Hamilton, Suffolk, England
p.s. my Google translator cannot manage 'pweshes'?

Lavender DeGodam said...

Hy there, my name is Yatie frm mylifewithxango.blogspot.com I have read frm the Xango consumer testimonies n i found out that some of them tried Xango on their autism children. Try check Xango and autism with Google. Maybe Xango can help ur son. Gud luck!

PURPOSE:Hoping for more understanding and less judgment from all.

 To show the importances of early intervention and an evidence based treatment to help reach the full potential of the child.

 Offering other parents hope to have faith in the positive progress of their child.

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