I can stop blaming myself now

Another consquence of there being lack of awareness for autism in Brunei is that whenever people see an autistic child, they automatically assume that their behaviour is due to a fault by the parents. This is because autistic children look completely normal. I will even go as far as saying that most of the ones I have encountered are actually very blessed in the looks department! Therefore, when others see them behave erratically the way they do, in particular when they are throwing tantrums, people automatically look at the parents and make the quick judgment that it is the parents that have no control over the child. The situation is different with children who suffer from down syndrome or any other disability where they obviously look ill. In contrast, their parents would often get looks of sympathy, which again is still a form of judgment, but hey, it's better than being thought of as an irresponsible parent isn't it?

I still remember my aunt (mother of my 14 year old autistic and also verrry handsome cousin) telling me that back when my cousin was a toddler and when the awareness was probably less than zero, in her search for a diagnosis, one nurse actually had the nerve to say "anak kita ani cemani pasal ada yang kita buat bah tu..." which basically sums it all: people generally think it is the parents' actions that have somehow led to their children being autistic.

Raiyan was my first born, so apart from reading Dr. Miriam Stoppard books and babycenter.com, I did not have much knowledge on how to raise a child. Following their advice, I would try to stimulate Raiyan as young as possible by showing him brightly coloured toys, putting on classical music and basically talk to him and make everyone else talk to him as much as I can. As he got older, we exposed him to more advanced toys, including wooden puzzles and books, lots and lots of books which we were happy to see he showed much interest in. And yet, when he still wasn't talking, Jeff and I kept asking ourselves "what are we doing wrong? what are other parents doing that we aren't?". Raiyan is also very LOUD. When he cries in Gadong, you can hear him in Berakas. So when he has his tantrum, it is for the whole country to hear. And again, judge. Because of that, Jeff and I would think that maybe we spoil Raiyan even though we really believe we don't. Nevertheless, we got stricter with Raiyan and scolding him became a normal thing as early on as he was 2.

It was especially stressful because before Raiyan was diagnosed, we didn't even have a reason as to why Raiyan was like that. Everytime people approach him and then notice that he is "different" we are compelled to just sheepishly respond by saying "awu andang balum pandai becakap" or" or "andangnya ia ani pemilih/fussy sikit" blah blah blah... I don't need to be a mind reader to know what they thought of me as a parent. It doesn't help that I'm the type of mother who must dress up and wear make up everywhere I go.

So you can imagine the bittersweet relief I felt when the ABA told us that autism is mainly genetics and there is no way I should blame myself for Raiyan being the way he is. She made Jeff and me feel a million times better by further saying that without all the attention we have given Raiyan all this time, he could be in a worse position than he is now. Holding back tears from being an insecure mother for 4 years, I thanked her from the bottom of my heart for her words of assurance.

I reiterate that the earlier we go the better it is for the child. At the same time, you can also prevent further heartbreak to yourself thru forever questioning what it is you're not doing right etc. I'm sure you are already doing the best you can. The only better thing to do is to refer your child to someone who knows how to deal with him/her the way they should be dealt with.

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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.

Amin.
 
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