Is he? Isn’t he?
Yeah he’s ok, he’s developing well but just a prob a bit slow..
Ermm is it still possible he’s autistic
But CDC said he’s not
But why is he still not talking to us as well as his peers?
But at least he’s talking..
Blah blah blah
And this went on and on for 3 years.
I am ready to admit that I was in a subconscious denial about the autism thing. Otherwise, I really cannot understand as to why I never looked it up. If I DID, I would have learnt earlier on about all the typical symptoms that Raiyan clearly had that I did not know were to be autistic symptoms. Symptoms such as lining up his toys, getting uncomfortable with crowds, not knowing how to pretend play, unwillingness to try new things, scared to go to new places, incessant need for the same routine to be followed through every time and of course the uncontrollable tantrums are apparently recognized signs of autism.
Of course not all autistic children are the same so one child can have some of the symptoms and another child can have different symptoms altogether. The “symptoms” that I stereotypically previously associated with autism (through the grapevine here and there) were speech delay (tick), lack of eye contact (tick), unsociable (non-tick), non-affectionate (non-tick), flapping arms and/or walking on toes (non-tick). So since there was more non ticks than ticks, and plus the fact that his talking was developing (though as I will explain later not in the right way), I tried hard to convince myself that he did not have the typical symptoms and thus not autistic.
AND we were further reassured by CDC for saying the same thing.
So you can imagine our initial defensiveness when K (Raiyan’s ABA) first mentioned the possibility of Raiyan being autistic. Huh? On what basis?? How can she know after just seeing him for a few minutes?? But CDC said inda jua, what does she know??
Till she explains that autism is a SPECTRUM and that in Raiyan’s case, it may not be as severe and obvious as the type of cases that I previously associated autism with hence it is understandable that it was be missed by us and even by CDC. However, if left the way he was, he can actually get worse because not only will he not be able to communicate well with others, his rituals, his obsessions and his tantrums if left untreated would worsen and become permanent too.
As with typical children, any forms of stimulation for their brain should be intensively done before they turn 6. This is because in those precious early years, a child’s brain is still like a sponge and is still able to be molded by us. Therefore when it comes to autistic children, because their problem is a neurological wiring in the brain which affects the learning process, she advised that treatment and therapy is BEST started as early as possible to sort out the “wiring” as much as we can. Nowadays in the States, they are even diagnosing as early on as 18 months so these children can have a better chance to a major recovery compared with older children. Naturally it gets really difficult to learn new skills and things beyond 6 years old, which explains why those that were diagnosed late and started therapy late did not necessarily have the kind of progress that you are seeing with Raiyan.
What I mean by the thin autism line is that sometimes, the line between an autistic child (especially those on the high functioning end) and a typical child is very thin. For instance when it comes to speech, Raiyan’s was coming along as he was able to say any word we tell him to, he could sing a whole nursery rhyme and he could read books. So to my understanding the boy can talk. It’s just that he wasn’t able to talk WITH you. That was my mistake. I mistook his “self-talk” (talking to himself by reciting something he heard from TV or singing a nursery rhyme to himself etc) as a speech development but it’s really not. It is actually an autistic trait. Another speech symptom is something called echolalia where he would repeat everything I say to him. Again, I mistook this as a speech improvement because he was there talking next to me, but unfortunately, alongside me and NOT together with me. A typical child would be able to answer your question instead of just repeating your question which was what Raiyan kept doing.
I also understand that traits like tantrums, stimming behaviour (paingan), rituals and obsessions can be found in typical children too. The question is at what point does these behavioural patterns change from innocent quirks into actual autism symptoms? My “mummy instinct” answer is that when it just seems too extreme and uncontrollable. I’ve noticed Alisha liking Elmo a lot but she doesn’t need to watch it all the time and when we switch if off, she doesn’t go ballistic. But Raiyan was thinking of his animals all day and night and was not interested in anything else.
But after all that has been said and done, I can still completely understand that a lot of times WE JUST DO NOT KNOW when the line is crossed.
I also get dubious about some people who say there was a kid they know who didn’t speak until he was 5 or 6 and now he’s OKAY. But what is their definition of OKAY? If you are given the chance to really check if he’s totally OKAY by a qualified professional, wouldn’t you want to take that chance? The line is just too thin for you yourself to decide if he’s OKAY, when he has missed such a major milestone like that, for no reason at all. Maybe he seems okay but imagine how much better he would be if the experts did find something there that could be easily treated? Especially when autism is more of a behavioural anomaly rather than a speech one, maybe it’s possible that their speech became “ok” but other aspects of their behavior, especially socially, are still bordering those on the autistic spectrum?
I’m not trying to scare you parents by casting such doubts in your head. I’m just laying out the big picture so you can really decide what you think is best for your child.
For me, if I didn’t meet K, I think Raiyan would have been left the way he is and we’d forever be going down the same road and asking ourselves the same questions over and over again until forever. This is especially since I didn’t know where else to go after being sent away by CDC who said he was fine.
BUT the situation for you is different now. Learning Ladders are giving you the golden opportunity to put those uncertain feelings and suspicions that you may have to rest. If the child psychologist deems your child to be normal then syukur alhamduillah, you can enjoy the rest of your life and child’s life without having to worry anymore. But if you do get a diagnosis that confirmed your suspicions all along, especially at an early age, you can start the treatment and therapy and reap all the benefits from doing so. Raiyan is live evidence that the therapy he’s going through works. Sometimes I still can’t help wishing that we got him diagnosed earlier. But insyaAllah at 4 and a half, he can still benefit a lot from the early diagnosis.
For parents that are losing sleep every other day or week or month over this, just give Learning Ladders a call and set up an appointment with the next child psychologist. Apart from the cost*, it really is a win-win situation.
*I will elaborate more in a later post, but Learning Ladders offer an interest fee loan for the costs of the child psychologist that you can pay back monthly afterwards. Just email me if you are interested to know more details now.
Yeah he’s ok, he’s developing well but just a prob a bit slow..
Ermm is it still possible he’s autistic
But CDC said he’s not
But why is he still not talking to us as well as his peers?
But at least he’s talking..
Blah blah blah
And this went on and on for 3 years.
I am ready to admit that I was in a subconscious denial about the autism thing. Otherwise, I really cannot understand as to why I never looked it up. If I DID, I would have learnt earlier on about all the typical symptoms that Raiyan clearly had that I did not know were to be autistic symptoms. Symptoms such as lining up his toys, getting uncomfortable with crowds, not knowing how to pretend play, unwillingness to try new things, scared to go to new places, incessant need for the same routine to be followed through every time and of course the uncontrollable tantrums are apparently recognized signs of autism.
Of course not all autistic children are the same so one child can have some of the symptoms and another child can have different symptoms altogether. The “symptoms” that I stereotypically previously associated with autism (through the grapevine here and there) were speech delay (tick), lack of eye contact (tick), unsociable (non-tick), non-affectionate (non-tick), flapping arms and/or walking on toes (non-tick). So since there was more non ticks than ticks, and plus the fact that his talking was developing (though as I will explain later not in the right way), I tried hard to convince myself that he did not have the typical symptoms and thus not autistic.
AND we were further reassured by CDC for saying the same thing.
So you can imagine our initial defensiveness when K (Raiyan’s ABA) first mentioned the possibility of Raiyan being autistic. Huh? On what basis?? How can she know after just seeing him for a few minutes?? But CDC said inda jua, what does she know??
Till she explains that autism is a SPECTRUM and that in Raiyan’s case, it may not be as severe and obvious as the type of cases that I previously associated autism with hence it is understandable that it was be missed by us and even by CDC. However, if left the way he was, he can actually get worse because not only will he not be able to communicate well with others, his rituals, his obsessions and his tantrums if left untreated would worsen and become permanent too.
As with typical children, any forms of stimulation for their brain should be intensively done before they turn 6. This is because in those precious early years, a child’s brain is still like a sponge and is still able to be molded by us. Therefore when it comes to autistic children, because their problem is a neurological wiring in the brain which affects the learning process, she advised that treatment and therapy is BEST started as early as possible to sort out the “wiring” as much as we can. Nowadays in the States, they are even diagnosing as early on as 18 months so these children can have a better chance to a major recovery compared with older children. Naturally it gets really difficult to learn new skills and things beyond 6 years old, which explains why those that were diagnosed late and started therapy late did not necessarily have the kind of progress that you are seeing with Raiyan.
What I mean by the thin autism line is that sometimes, the line between an autistic child (especially those on the high functioning end) and a typical child is very thin. For instance when it comes to speech, Raiyan’s was coming along as he was able to say any word we tell him to, he could sing a whole nursery rhyme and he could read books. So to my understanding the boy can talk. It’s just that he wasn’t able to talk WITH you. That was my mistake. I mistook his “self-talk” (talking to himself by reciting something he heard from TV or singing a nursery rhyme to himself etc) as a speech development but it’s really not. It is actually an autistic trait. Another speech symptom is something called echolalia where he would repeat everything I say to him. Again, I mistook this as a speech improvement because he was there talking next to me, but unfortunately, alongside me and NOT together with me. A typical child would be able to answer your question instead of just repeating your question which was what Raiyan kept doing.
I also understand that traits like tantrums, stimming behaviour (paingan), rituals and obsessions can be found in typical children too. The question is at what point does these behavioural patterns change from innocent quirks into actual autism symptoms? My “mummy instinct” answer is that when it just seems too extreme and uncontrollable. I’ve noticed Alisha liking Elmo a lot but she doesn’t need to watch it all the time and when we switch if off, she doesn’t go ballistic. But Raiyan was thinking of his animals all day and night and was not interested in anything else.
But after all that has been said and done, I can still completely understand that a lot of times WE JUST DO NOT KNOW when the line is crossed.
I also get dubious about some people who say there was a kid they know who didn’t speak until he was 5 or 6 and now he’s OKAY. But what is their definition of OKAY? If you are given the chance to really check if he’s totally OKAY by a qualified professional, wouldn’t you want to take that chance? The line is just too thin for you yourself to decide if he’s OKAY, when he has missed such a major milestone like that, for no reason at all. Maybe he seems okay but imagine how much better he would be if the experts did find something there that could be easily treated? Especially when autism is more of a behavioural anomaly rather than a speech one, maybe it’s possible that their speech became “ok” but other aspects of their behavior, especially socially, are still bordering those on the autistic spectrum?
I’m not trying to scare you parents by casting such doubts in your head. I’m just laying out the big picture so you can really decide what you think is best for your child.
For me, if I didn’t meet K, I think Raiyan would have been left the way he is and we’d forever be going down the same road and asking ourselves the same questions over and over again until forever. This is especially since I didn’t know where else to go after being sent away by CDC who said he was fine.
BUT the situation for you is different now. Learning Ladders are giving you the golden opportunity to put those uncertain feelings and suspicions that you may have to rest. If the child psychologist deems your child to be normal then syukur alhamduillah, you can enjoy the rest of your life and child’s life without having to worry anymore. But if you do get a diagnosis that confirmed your suspicions all along, especially at an early age, you can start the treatment and therapy and reap all the benefits from doing so. Raiyan is live evidence that the therapy he’s going through works. Sometimes I still can’t help wishing that we got him diagnosed earlier. But insyaAllah at 4 and a half, he can still benefit a lot from the early diagnosis.
For parents that are losing sleep every other day or week or month over this, just give Learning Ladders a call and set up an appointment with the next child psychologist. Apart from the cost*, it really is a win-win situation.
*I will elaborate more in a later post, but Learning Ladders offer an interest fee loan for the costs of the child psychologist that you can pay back monthly afterwards. Just email me if you are interested to know more details now.
2 comments:
Pweshes Mama,
I have to agree that it is a very thin line that we are treading on.
My second son, diagnosed with classic autism, grew up "normal". He was talking, playing pretend and even imitated dance movements from "Wiggles" & "Hi-5" and he could solve every kind of jigsaw puzzle that you give him!.But after a life threatening asthma attack at nearly the age of 2, our lil' boy became silent. He became a living doll, not talking or gesturing. He regressed meaning he reverted back to "baby stage". We, the parents, were devastated (to put it mildly!)
Our eldest boy on the other hand was very talkative,knew every mode & make of every transportation on the road and talked about chemistry and was a little philosopher pondering on questions such as "Does Brunei have a future?"
But he started talking early (before 1 yr), climbing early (6-8 mths) and read books at 2yrs. he also loved to line things up, overturn every toy that has wheels just to watch them spin and loves to spin himself around without getting dizzy at all and no eye contact. If you so much as move one thing out of line his howl would be as if the world would come to an end!
When we first had our second son screened at CDC, the questions asked by the paeditrician all pointed to my first son BUT he had speech!
In school the principal suggested my first son to be autistic and to have him tested. We tried to get him tested but every paediatrician we saw said he is normal! He talks! Autistic children don't talk!
So my first born's "quirkiness" was ignored for a while.....we put in all our efforts on my second son instead.
Alhamdulillah, 1 1/2 months after starting ABA my second son is able to point to me and say Mummy! But at the same time my first son progressed very well in school and sccoring A's. But his quirkiness is still there and he gets bullied a lot in school and this causes his self-esteem to drop drastically.
This year we finally had him properly diagnosed by the Psychologist brought in by Learning Ladders. The diagnosis Autism ( high functioning)!
At last we were relieved to be able to put a name to our son's quirkiness and it explains a lot about his behaviour.
Now we know which behaviour to target to help him build up his self esteem and confidence.
So in supporting you Pweshes Mama, YES to parents out there....don't lose sleep over the ifs and whats of your child. See a qualified specialist. The truth may hurt but in the end it is to the BENEFIT of your child and his/her future.
autismx2, thank you for your support and for sharing your experience. Your case was even more confusing as both of them were so different and yet in the end both have autism! But Alhamdulillah, they are both diagnosed already and not only can you and hubby stop tossing and turning, wondering and worrying as to if they are or not etc but now you can do something to help them! Otherwise we'll just get confused by this or that person's speculations!
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