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Monday, February 7, 2011

Autism Really is a Riddle Wrapped in a Mystery.

Enigmatic is a great description for Autism. It is such a broad spectrum of  behaviours and symptoms. Many think, as do I, that in time we will come to identify what is now classed as ASD as a separate set of  'disorders'. Not just the one. There is just too much difference. Those who are born ASD, versus those that regress. Those who are verbal versus those who are not. Those who are physically clumsy versus those who have no gross or fine motor challenges. Those with co morbid disorders such as anxiety, OCD, Epilepsy, ADHD,  Bi Polar and sensory processing disorders. Those who have food intolerances and fixations, and those that don't. Those who have some form of intellectual impairment versus those who blow most of us out the water on IQ tests. On and on it goes. There are even some ASD people for whom eye contact is not such a big deal, and are actually very social despite their difficulty in understanding the non verbal cues most of us instinctively get. Then there are those for whom solitude is bliss. Obviously there are similarities, and these are used as assessment criteria, but as the saying goes, if you have met one person with Autism, then you have met one person with Autism.

Harri being only two often acts like a very normal toddler. He is self absorbed, doesn't respond when called, throws tantrums and food. Is destructive, inquisitive, active and strong willed. Strives to assert independence and enjoys novelty. So it is understandable that others observing him may struggle to come to terms with his ASD diagnosis. So what else might they see? If they pay close attention they will note his echolalia and echopraxis. They might call him and notice that he has no reaction (almost always) to his name. And if he does respond it will be fleeting, and with only a moment if any eye contact. They might become aware that he doesn't shy away from other kids, but is a little uncertain about what to do with them. Though thanks to his sisters play efforts he is getting better at this. They may catch ocassionally the excited flapping of his hands too. My point is that he is clearly Autistic, yet his behavioural quirks are subtle most of the time and so at least for now he can merge into the crowd. I know the days are coming when he is older and those differences between himself and peers will become clearer. When the social expectations will at times be more than he can live up to. But for now I completely understand how so many parents of young children with mild Autism would not have any ASD bells ringing. That it would only be once school starts and the differences are seen via side by side comparisons with other children. I feel so grateful we are not in that position. I can't imagine the guilt, shock and fear that could come with obtaining a diagnosis once a child is six, seven or older. Perhaps for some families it would bring an aha moment or sense of relief to finally have an explanation for previously inexplicable traits. But for me I am glad for knowing now, and feel fortunate to be given the opportunity to help prepare for the looming school years and beyond.


  1. hi sharon,
    i just go throgh ur blog.i wish all he best for harri.
    i am bobby,mom of two sons who are 2.6 yra and 6 months. my elder son is just diagnosed with autism and devlopmental delay..we are setteld in singapore but will shift to perth by the month of June.
    i would like to email you to know several inormations.can u pls provide me ur email address.

  2. Hi bobby, my email address is I will be happy to offer any advice I can.

  3. BB was diagnosed before he was 3 but I'm still thinking "What if we'd got help sooner?" Whatever happens, we can turn it into a guilt trip for ourselves!

  4. so true bbsmum. Next post topic. GUILT!

  5. It was a long time before we knew, though we knew they were delayed earlier. I think it is harder to learn later, but at the same time I think when you get a diagnosis early the fear of the difference in outcomes can be traumatic in and of itself. Some people seem to forget that individuals with autism to progress and do change. Who they are at two or three doesn't mean they won't be much more capable at twelve or twenty.

  6. Stephanie, we have only had our dx for a short time and yet I am continually astounded by Harri's spurts of growth and development.I would hope any parent would remember your point. They are learning, whether it is obvious or not.

  7. I'm glad you are able to see Harri's growth and development. I think it's hardest for extroverts who are blessed with an introverted, non-verbal child. Much of the growth and development is "invisible" so has to be taken on fail until the child discovers a way to share what he or she knows.

  8. Oh wow. The time from when I had a bad, nagging feeling about my son's moodiness, to the time I knew exactly what was wrong, to the time I got a diagnosis, to the time I got him into a great ABA center, was, um, incredibly stressful, and I'm happy to say very short.

    I agree with what Stephanie said, that an early diagnosis might bring on a lot of stress simply because an 18 month old or a 2 year old naturally doesn't have enough skills to assure his/her parents about a good prognosis. When Wylie regressed, I knew nothing about his capabilities. He was no longer able to follow simple directions he had responded to before, and the experts just said "Well. We will have to see how he progresses before we can guess what kind of outcome he will have." That was the worst of it- so far, obviously, as this is really the beginning of my journey as well.

    I have to say, I still get kind of rude awakenings... Wylie is in a center based ABA program, although it's like 98% one on one with some social groups... he stands out as one of the brightest and really has minimal suffering- it breaks my heart to see another child cry out in reaction to a sensory issue or stress. And then Wylie will be with some NT kids his own age and it can be such a shock I get emotional for a little bit. 2 year olds asking questions and calling their mommies "Mommy" - what a concept!

    I don't know if I necessarily agree with you on the different, separate dx's down the road. Obviously speculation on both our parts, so I'll say I find it interesting to think about! I guess I just wonder about how prominent a role sensory issues play and I find the mental retardation stats thrown around without any evidence a little suspicious, so much so that I wonder if mental capabilities are sorta within a pretty similar range as the normal population. Obviously there is a pretty noticeable population of gifted individuals with ASD, but it seems indirectly related to the dx. My guess right now would be that ASD manifests itself differently in different people because of natural biological differences and coincidental co-morbidities, but I'm not exactly ready to pull out a bunch of peer reviewed info and analyze it in order to make a better educated guess. Haha! Critical thinking is a must- so is time management.

    Anyway, nice post! Have a nice day!

  9. It is interesting to think about. I think your point about individual biological differences is valid, obviously some peiople have some protective genetic factors that others do not, as this may go some way to explaining the variation in ASD presentations. Maybe....?

    Sounds like you have a smart cookie there SS. I sometimes wish we were centre based. I feel isolated in our little home bubble. I would really like to know some more ASD kids, and their parents. The time and motivation to do so beyond the interwebs is the problem here. So I hear you about the time management.