Whenever I meet other parents of autistic children, I always find that the best way for us to connect with each other is by exchanging stories of how and when we began to be suspicious of our children's behaviours.
From this experience, I have found there to be a spectrum on these stories. On one end, there are those that have noticed something different from the day the child is born and on the other end are those who say their child developed normally until about a year old (usually when the MMR shot was given) and that is when they notice their child starting to withdraw and change into a different person.
Raiyan was our firstborn and furthermore, he was the only baby in our family at that time so Jeff and I never had anybody else to compare him to. When he was growing up, we weren't particularly alarmed with anything apart from his speech delay and anything he did, even when highlighted by others to be slightly unconventional, we would merely conclude that the behaviour was part of his unique personality (it didn’t help that I have always been the type of person that shuns conformity and always strive to stand out from others!). So for example, I would take pride when others comment on his incessant need to line up paper cups to be on the same level with each other (when served during a family function) or how amazing it is that he never scribbled on the walls, both of these behaviours you wouldn’t normally find in typical children. Jeff and I, more often than not chose to view his “difference” positively and never negatively. On the good side, this shows how openly accepting we were of our child’s personality and character and disregarded the need for him to conform to expectations of others. Unfortunately it also meant that we were turning a blind eye to symptoms we should have alerted ourselves with.
So needless to say, after Raiyan's diagnosis, Jeff and I have gone on overdrive in educating ourselves about autism by reading many books, articles and blogs particularly those shared by other autism parents. Symptoms and signs have always been an interesting subject because that is the first question others always ask. So much so that Learning Ladders published and distributed a booklet on signs and symptoms during our official launching event. I find this need to learn more important as I have always intended to have many children (I’m thinking at least five...) so this way I can learn to spot the signs as early on as possible. In fact, I am already on high alert with pweshes Addin (who happen to look exactly like a mini Raiyan), constantly observing his actions, and keeping in check with all the milestones expected of him. As I have mentioned before, Alisha at 2 years old, seems to be a typical child. She is talking and communicating easily with others and is constantly in an attention seeking mode (sometimes a tad too much-ngalih pulang melayan!)
With the benefit of hindsight, I am remembering more and more signs Raiyan displayed in his early years (and not due to him being born premature) which are clearly distinguishable from what I saw with Alisha and her early development. I am quite ashamed to admit that there are times when I am anxiously and nervously on the lookout with Addin for any of the symptoms that Raiyan had displayed in his early years so as to reassure me that Addin does not possess those symptoms and so there is a likely chance that he is not autistic. (Though we would be redha if that happens anyway).
Just to share, my earliest memories of Raiyan's symptoms which I didn’t see in Alisha and am not seeing in Addin so far (and also some I was amused to discover were shared by other autism parents too) are:
1) He had poor eye contact as early on as 4 months old. My sister Tiwin only met him for the first time at that age having been away when he was born. At their first meeting, Tiwin couldn’t help noticing that Raiyan only looked at him from the corner of his eye and when she looked back at him he would look away! There is some resemblance between my sister and I so I can’t help thinking that he was interested in looking at her face but at the same time was not able to handle it when she would look back at him;
2) His first tantrum was when he was 7 months old and it was on our trip to Sydney. After spending a whole morning out and about shopping, he suddenly started screaming at the top of his lungs for no apparent reason (we assumed he was just hot) and we weren't able to quieten his screams for more than an hour. We tried almost everything but he just refused to stop crying until after about 20 mins of being in the hotel room;
3) He never crawled nor raised his knees and body up but instead had a strange combat movement of shuffling his torso across the floor to move around. Therefore, he leaped from having this strange combat movement to straight away walking alongside things he can hold on to;
4) He was fascinated with the spinning fan on the ceiling as early on as 2 months and would just stare and stare at it;
5) He never knew how to hold his bottle properly that we had to buy bottles with handles and he used it all the way until he was 4 years old;
6) He was always such a deep sleeper. Though this may be contrary to some parents’ accounts of their children having sleep problems, Raiyan’s deep sleeping pattern was still peculiar in that, we would be watching TV on full blast volume with him sleeping in his cot in the same room or Jeff would be pushing him sleeping in his stroller in high speed across Manhattan along the bumpy blocks and streets and he wouldn’t budge at all and still be sound asleep;
7) He never babbled until he was probably about 18 months old. Instead he just screams "EEEHHH" or "AAAGGHH";
8) He was never fussy or “pemilih” with people. In hindsight, this was probably because he was indifferent as to who was with him anyway!
9) He was terrified of small enclosed places that he would uniformly cry at one of our aunties’ house during makan2 because there were too many people in a small room. After a point, I’m sure my auntie was jaded with our repeated excuse of “ia kan tidur/ia baru bangun tidur”;
10) There is this video of him laughing away (at 7 months old) after finding Tiwin sneezing absolutely hilarious. From there, we could have concluded that he was a social baby after all, being able to joke around with others. But again, with the benefit of hindsight, I am learning that his way of laughing or “socialising” was still different because he was only laughing at the act of being “shocked” by her sneezes and not even once when he was laughing was he looking at Tiwin. Hence, that precludes that incident from being a “social” connection. In addition, Raiyan can always, like at the switch of a button, be made to laugh hilariously by being “shocked” or kena kajutkan. He loves this game so much that even at 5 years old, it is a sure fire way to draw out his infamous elmer fudd cackles. Clearly, this means that jokes or laughing matters are still in a big way subject to his terms and we have to work on introducing him to other ways and especially, more social ways to laugh with others. (which he is-but unfortunately it’s to do with laughing at others’ mistakes!)
11) He never liked to watch mainstream TV until he was about 4 years old. Instead, he would just watch his DVDs again and again (and even those, he would always hide in the corner of the room watching the new ones until he’s comfortable with them). I think this is because of his need of predictability and with mainstream TV, he wouldn’t know what would come next.
From this experience, I have found there to be a spectrum on these stories. On one end, there are those that have noticed something different from the day the child is born and on the other end are those who say their child developed normally until about a year old (usually when the MMR shot was given) and that is when they notice their child starting to withdraw and change into a different person.
Raiyan was our firstborn and furthermore, he was the only baby in our family at that time so Jeff and I never had anybody else to compare him to. When he was growing up, we weren't particularly alarmed with anything apart from his speech delay and anything he did, even when highlighted by others to be slightly unconventional, we would merely conclude that the behaviour was part of his unique personality (it didn’t help that I have always been the type of person that shuns conformity and always strive to stand out from others!). So for example, I would take pride when others comment on his incessant need to line up paper cups to be on the same level with each other (when served during a family function) or how amazing it is that he never scribbled on the walls, both of these behaviours you wouldn’t normally find in typical children. Jeff and I, more often than not chose to view his “difference” positively and never negatively. On the good side, this shows how openly accepting we were of our child’s personality and character and disregarded the need for him to conform to expectations of others. Unfortunately it also meant that we were turning a blind eye to symptoms we should have alerted ourselves with.
So needless to say, after Raiyan's diagnosis, Jeff and I have gone on overdrive in educating ourselves about autism by reading many books, articles and blogs particularly those shared by other autism parents. Symptoms and signs have always been an interesting subject because that is the first question others always ask. So much so that Learning Ladders published and distributed a booklet on signs and symptoms during our official launching event. I find this need to learn more important as I have always intended to have many children (I’m thinking at least five...) so this way I can learn to spot the signs as early on as possible. In fact, I am already on high alert with pweshes Addin (who happen to look exactly like a mini Raiyan), constantly observing his actions, and keeping in check with all the milestones expected of him. As I have mentioned before, Alisha at 2 years old, seems to be a typical child. She is talking and communicating easily with others and is constantly in an attention seeking mode (sometimes a tad too much-ngalih pulang melayan!)
With the benefit of hindsight, I am remembering more and more signs Raiyan displayed in his early years (and not due to him being born premature) which are clearly distinguishable from what I saw with Alisha and her early development. I am quite ashamed to admit that there are times when I am anxiously and nervously on the lookout with Addin for any of the symptoms that Raiyan had displayed in his early years so as to reassure me that Addin does not possess those symptoms and so there is a likely chance that he is not autistic. (Though we would be redha if that happens anyway).
Just to share, my earliest memories of Raiyan's symptoms which I didn’t see in Alisha and am not seeing in Addin so far (and also some I was amused to discover were shared by other autism parents too) are:
1) He had poor eye contact as early on as 4 months old. My sister Tiwin only met him for the first time at that age having been away when he was born. At their first meeting, Tiwin couldn’t help noticing that Raiyan only looked at him from the corner of his eye and when she looked back at him he would look away! There is some resemblance between my sister and I so I can’t help thinking that he was interested in looking at her face but at the same time was not able to handle it when she would look back at him;
2) His first tantrum was when he was 7 months old and it was on our trip to Sydney. After spending a whole morning out and about shopping, he suddenly started screaming at the top of his lungs for no apparent reason (we assumed he was just hot) and we weren't able to quieten his screams for more than an hour. We tried almost everything but he just refused to stop crying until after about 20 mins of being in the hotel room;
3) He never crawled nor raised his knees and body up but instead had a strange combat movement of shuffling his torso across the floor to move around. Therefore, he leaped from having this strange combat movement to straight away walking alongside things he can hold on to;
4) He was fascinated with the spinning fan on the ceiling as early on as 2 months and would just stare and stare at it;
5) He never knew how to hold his bottle properly that we had to buy bottles with handles and he used it all the way until he was 4 years old;
6) He was always such a deep sleeper. Though this may be contrary to some parents’ accounts of their children having sleep problems, Raiyan’s deep sleeping pattern was still peculiar in that, we would be watching TV on full blast volume with him sleeping in his cot in the same room or Jeff would be pushing him sleeping in his stroller in high speed across Manhattan along the bumpy blocks and streets and he wouldn’t budge at all and still be sound asleep;
7) He never babbled until he was probably about 18 months old. Instead he just screams "EEEHHH" or "AAAGGHH";
8) He was never fussy or “pemilih” with people. In hindsight, this was probably because he was indifferent as to who was with him anyway!
9) He was terrified of small enclosed places that he would uniformly cry at one of our aunties’ house during makan2 because there were too many people in a small room. After a point, I’m sure my auntie was jaded with our repeated excuse of “ia kan tidur/ia baru bangun tidur”;
10) There is this video of him laughing away (at 7 months old) after finding Tiwin sneezing absolutely hilarious. From there, we could have concluded that he was a social baby after all, being able to joke around with others. But again, with the benefit of hindsight, I am learning that his way of laughing or “socialising” was still different because he was only laughing at the act of being “shocked” by her sneezes and not even once when he was laughing was he looking at Tiwin. Hence, that precludes that incident from being a “social” connection. In addition, Raiyan can always, like at the switch of a button, be made to laugh hilariously by being “shocked” or kena kajutkan. He loves this game so much that even at 5 years old, it is a sure fire way to draw out his infamous elmer fudd cackles. Clearly, this means that jokes or laughing matters are still in a big way subject to his terms and we have to work on introducing him to other ways and especially, more social ways to laugh with others. (which he is-but unfortunately it’s to do with laughing at others’ mistakes!)
11) He never liked to watch mainstream TV until he was about 4 years old. Instead, he would just watch his DVDs again and again (and even those, he would always hide in the corner of the room watching the new ones until he’s comfortable with them). I think this is because of his need of predictability and with mainstream TV, he wouldn’t know what would come next.
These are only some of the things I remember and I have yet to dig up old home videos that I haven’t watched yet in case I have missed others. Please don’t be overly concerned if after reading the symptoms I have listed above, you notice they are inherent in your typical children. Remember that there will always be an overlap with the behaviours of typical and autistic children. But what is striking with autistic children is that their different behaviours happen more frequently and intensely and when combined with typical behaviours, the majority would always consist of the strange ones.
As I have said, I do find it helpful for me to single out these early signs of Raiyan because the earlier we spot the signs the earlier we can intervene with our other babies if we feel there is a need to do so.
Apart from that, making the list also enables me to exchange more lively stories with other parents on such a mutually fascinating subject. Any of you readers identify with any of the symptoms that I shared?
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