11.11.2012

Cracking the Autism nut

I am not a person that enjoys realms of the unknown. I pride myself on being an organized, sequential thinker, a problem solver. It shouldn't be surprising then that autism, along with that frustrating puzzle as its emblem is continuously running through my mind, like a song stuck in your head, the title of which you can't recall but you're determined to make yourself remember. No matter how many times I try to accept it as the puzzle that it is, I feel my mind whirring on it, spinning its wheels helplessly, running it through over and over even as I attempt to distract it with other tasks.

The staggering amount of conflicting autism information currently available can be very overwhelming to parents just coming to terms with a recent diagnosis. I for one initially did as much research as my poor overtired brain would allow which led to a period of autism burnout, when I deliberately avoided reading anything new because I found it all too contradictory and confounding.

What I did discover pretty quickly was that the autism community is quite divided. So naturally I had to try to find a slot for myself, stake out my little piece of autism land so to speak. I went through a (very) brief infatuation with the "cure autism from the inside" camp. However being a jaded sceptic, for better or for worse, I didn't linger there for too long. I consider it as being in the bargaining stage of the 5 stages of grief- "she will be fine when she gets toxins out of her body/eliminates gluten/gets the right vitamins and supplements".

I then turned to more scientifically proven approaches. Surely if one can make dogs salivate at the sound of a bell, then one can make autistic kids build a block tower? I have no concrete results to report yet however, as we are presently on the scientifically proven wait list for that service.

But i still read autism news and research and once in a while i'll read something that gets my mind going again. I came across this study last week. It basically says that contrary to popular belief, most infants who go on to develop autism do not show signs of the disorder at 6 months of age. At first read I totally agreed. We are among the parents who did not suspect autism until much later than 6 months in fact.

However as I dove in deeper into research of this topic, I found this study from May. This one I'm sure many people have heard about since it's been around for a while. It says that in a sibling study done on kids at a heightened risk of autism, those without good head control in a specific test were found to be much more likely to be diagnosed with autism at 30-36 months of age. According to that study Sophie did show early signs of autism, which went unnoticed.

Whenever I come across a study that offers insight into Sophie's autism, I can't help having mixed feelings. On one hand I am happy other parents have access to information we didn't. On the other, I can't help thinking "if we had known..."

Then what? Would we have done anything differently? Perhaps. Would we have been able to "save" Sophie? Not likely. But there is always that nagging feeling like we missed something that was there staring us in the face all along. So as i keep living in my little corner of autism land, I will keep reading, and thinking, searching for clues like some autism Sherlock Holmes, trying to form the puzzle pieces into a cohesive whole. And just maybe with the combined effort of other citizens of this vast and uncharted continent, one day the autism symbol will be a puzzle solved.

 

3 comments:

  1. I swing around on my thoughts about the causes of autism every time I read something new. I even start remembering differently---Janey always had some autistic traits! Janey showed no autistic traits until she was almost 3! And the divisions in the autism community throw me for a loop every time I read a differing opinion, too. I feel guilty I've never tried diets, I feel upset Janey didn't have ABA until she was almost 5, I worry I'm too accepting of her autism, not accepting enough...it's a merry-go-round of feelings. Sometimes I think I should just stop reading anything about autism, but of course that would make me feel guilty too! Along with you, I hope some day someone will solve this puzzle, even if it's just to eliminate some of the possible causes so I limit my guilt!

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  2. There's no words ladies, just agreement. You both said it all. Hugs. Autism burnout. I could not have described it better. We were diagnosed about 7 months ago & I believe that is exactly what I am going through.

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  3. Hey Admin, it's really nice that you have this positive thing and the feeling of being strong in odd situations. I read your post about being anonymous and it's totally okay, i know the feeling of being in such situation where you are afraid "what people would think and what will they say". I really respect your thought, I know the feeling because I've experienced it, people will be with you in any of your situation but they still have this feeling somewhere inside that his/her friend is not okay and not normal like us. It's good that you're writing these posts and keeping your research on. Thanks for sharing the post, visit the link below you'll find things related to speech language and autism disorder information.

    http://cluas.ie/children/speech-language-difficulties/

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