Wadi: A Tale of Autism Part 1

Meet Wadi. A five year old boy who has some interesting quirks, a big fan of Maher Zain and the ASTRO Oasis channel and his favorite snacks are keropoks and Oreos. But underneath all that, the appearance would suggest that there is some distinction between him and other typical kids. Some would say he is not normal as other kids though I would beg to differ as normality is perception based (I like to use the word "typical"). Wadi has ASD. In simpler terms, autism.

Now what is Autism? My wife and I sometimes have a tough time explaining that to friends and families as Autism awareness is very and very low especially in Malaysia. Makes us sometimes wished that we should stop questioning other people morality and start thinking of ways we can improve the quality of our lives(such as in term of better healthcare?). Most folks understand Down Syndrome more than Autism. Also portrayal of Autism in local media like TV3 Cerekarama's Mashitah didnt help either and heavily misleading.(Typical of local malay drama suffering from 'Did-Not-Do-Enough-Research' syndrome. Lazy scriptwriters!)Talking about Wadi with some of our friends can often cause some friction sometimes as some words may be misinterpreted by us and make us feel uncomfortable with their remarks about Wadi. We keep telling ourselves they know not what they say and did not really mean it in a negative way. Those who have Autistic kids will get what I mean.


Now taken straight from Wikipedia on the definition of Autism; Autism is a disorder of neural development characterized by impaired social interaction and communication, and by restricted and repetitive behavior. These signs all begin before a child is three years old. Autism affects information processing in the brain by altering how nerve cells and their synapses connect and organize; how this occurs is not well understood.It is one of three recognized disorders in the autism spectrum (ASDs), the other two being Asperger syndrome, which lacks delays in cognitive development and language, and Pervasive Developmental Disorder-Not Otherwise Specified (commonly abbreviated as PDD-NOS), which is diagnosed when the full set of criteria for autism or Asperger syndrome are not met. From what I understand (and what usually I tell people), Wadi is in his own 'world' with less regard or awareness of his environment and surroundings that delays his development such as speech. He is not interested in socializing with his own peers, have some difficulties in doing certain task like pointing, drinking through a straw, and no eye contact. Sometimes he likes to spin the wheels of his toy car but I would not say it is to the level of obsessiveness. He seldom acknowledges you when you call his name. But of these negative traits are slowly dialed-out as I will explain in later paragraphs.



Now I will write this article in a manner not to make you feel sorry for us but to foster understanding and to educate. I hate it when my wife cries about Wadi especially seeing how much he improves after all our efforts and God's grace. I take it as being ungrateful to God when crying and bemoaning your fate as He has blessed your life in many ways you may have overlooked. My philosophy is, 'you may know your misfortune today, but you never know what fortune you will receive tomorrow that make your life better.' So in the case of Wadi, I think it is wasteful to worry whether he can enter university or be independent living on its own as there is also no guarantee that a neuro-typical child would have a problem of his own. It is a challenge that we have to embrace and accept that we are chosen to overcome it to make us and Wadi a better version of ourselves.

My wife start noticing by 2 years old Wadi has a habit of turning his toy car upside down and playing it by spinning the wheels. It was not that frequent nor did he ever get temperamental when we took the toy car away. He is like simply doesn't care. His verbal skills does not advance much apart from gibberish. At that time my wife has suspicion that Wadi may be Autistic. Now I still get a bad rap for not doing anything about it sooner or especially when friends ask us that question. In my defense, Wadi is my first child and being a father was a new thing for me. I apologize for not making the right decision at that time but I have no regrets of my actions as I am a better person than I was even through the wrong decision that I made. The past is behind and the future is forward and Wadi is improving greatly. That's all that matters.

By this time we are still living in Kerteh where Mesra Mall haven't yet opened. In the daytime, Wadi was in care of one of our good neighbors. His 'pengasuh' had no problem taking care of Wadi. He was pretty easy to manage. Due to the delay of speech, we went to test his hearing at UIA Kuantan Hearing and Speech clinic and confirm that he has no hearing problem. Then we went to Hospital Tunku Ampuan Afzan to see a speech therapist but I feel she was not specialize for Wadi's case. Then I thought of sending him to kindergarten he would learn to socialize but that does not seem to work. The teachers have no issue with him its just that he prefers to be alone. He does not throw tantrums nor having destructive behavior. At least we are thankful for that.

Next we try to see a child psychiatrist at UIA Kuantan. But somehow his approach was not convincing enough and doesn't really gives us good enough advice on what to do. We were a bit crossed that he ask the question to us how do we feel having an autistic child. We were stumped. We dont know what to do. There are too many assumption but no one was able to us answer on how to proceed.

And then something wonderful happened. My wife discovered a new facebook friend, Intan Miranti that promotes ABA therapy for Autism. Through her ANDI initiative, she conducts workshop for parents with autistic kids teach them how to do ABA therapy for their children. We decided to meet her traveling all the way from Kerteh to PJ (and back to Kerteh all in one day).

At our first meeting, she not only explain to us the concept of ABA but also gives us understand about what autism really is. Things that amaze me that she was able to notice some small traits about wadi that we never notice before and gave us some indication that he can learn new skills and achieve breakthrough.We found out that not all doctors or phsciatrist are capable of diagnosis for Autism. The ones who do are only available in KL. Intan suggested to see a Child Behavior Specialist in Sunway Medical Centre to get a proper diagnosis for Wadi.

The ABA workshop consist of 4 session. Seat are limited and there were 10 parents. The first 2 session my wife have to go alone take a flight from Kerteh to Subang while I babysit the kids at home. What is ABA you might ask? From wikipedia; Applied behavior analysis (ABA) is the science of controlling and predicting human behavior. Behavior analysts reject the use of hypothetical constructs and focus on the observable relationship of behavior to the environment. By functionally assessing the relationship between a targeted behavior and the environment, the methods of ABA can be used to change that behavior. Research in applied behavior analysis ranges from behavioral intervention methods to basic research which investigates the rules by which humans adapt and maintain behavior. Through this workshop, we learn the concept of play time, table time, reinforcer, foreshadowing. The goal here is to get his attention even for a few seconds and with the help of reinforcer(things he likes) to increase his attention span and teach him skills such as matching, imitations, receptive instruction and etc.


Trying to apply it at home is a challenge at first. We were struggling. But Wadi did make little progress. We then enlist the help of one of our neighbours daughter who use to babysit for Wadi. Somehow Wadi respond better to strangers than us parents. What took us weeks to teach him only require days with someone else.

Now there are freelance therapist for ABA, but they operate only in KL or PJ area. And there are really particular about logistic i.e. if your house is too far even in Klang Valley, they seldom would take the job. Now this particular time I was having the lowest point in my career as mention in Me, Myself and Nobody Else. We felt that the best option would be to relocate to KL and acquire the services of professional therapist. The rates can be a bit premium but hey, duit boleh dicari. Not saying we are wealthy but I would say God has graciously given us the oppurtunity to make this happen. Barangkali ia rezeki untuk Wadi.

So I resign with Petronas, went to Saudi and my wife made the neccessary application for a transfer to Selangor. We were taking risk to seek change for the better. But indeed, we have seen significant improvements in Wadi since we got here and put him through extensive ABA therapy and other programs available for him here.


To be continue....