It’s a SPECTRUM, dammit!

When we were trying to find out why Riley wasn’t talking at 4 years old and first started learning about autism, I became painfully aware of the stereotypes that exist around the condition.  Some comments came from people whose entire exposure to autism came from “Rainman”.  “Duh, does she count toothpicks? hur hur”, I heard a couple of times.  Other comments came from people whose exposure to autism was purely academic.  “That’s not autistic behavior,” said the well-meaning relative.  Then there’s the comments from the parents of profoundly disabled children.  “If you think autism is anything but a curse and a nightmare and if you get to sleep and don’t spend every minute of every day fighting for services or education or insurance, then your child doesn’t have autism.”

To ALL of these people I would just like to say, ASD stands for “Autism Spectrum Disorder”.  Let’s examine this name.  What does “spectrum” mean?  Section 2A defines “spectrum” as “a continuous sequence or range”.  It does NOT say “all the same” or “a lot of things that are just alike”.  Every individual who lives with autism is just that: an individual!  Having a different experience from your experience (or from your stereotype) does not invalidate our experience!  My daughter wants to play with other kids and wants to play games.  She tries but the poor thing just doesn’t understand how to do it.  She’s pretty good at taking turns now but if the rules are more involved or there are multiple steps in each move, well, I’m not sure that we’ve ever finished a game when trying to stick to the rule book 🙂

I’d also like to point out that nonverbal children are often spoken about as if they aren’t there.  They seem as though they are not listening and they don’t respond so they’re clueless, right?  WRONG!!!!  They’ve grown up absorbing language and do understand!  They also have feelings that can be hurt!  Tyler was not speech delayed at all.  He would jump in to our conversations even when he was listening to music through headphones and playing with his Gameboy.  He appeared to be tuned in to something else but was also very much aware of what we were talking about.  Riley, on the other hand, did not start speaking until she was 5.  She had a completely zoned out, zombie-fied look about her most of the time and she didn’t respond so we were guilty of speaking as though she wasn’t there.  I feel terrible about it now!  I wish I had realized earlier that lack of speech does not equate to lack of knowing!

I guess what I’d most like to say is that we’d all get along so much better if we treated each other with respect.  Whether or not your child can communicate their feelings, treat them as though their feelings matter.  Whether or not somebody else’s experience matches with what you think it should be, respect that there are things you don’t know about their life.  Even if someone’s life seems less “nightmare-ish” compared to your own, don’t be angry with them.  No, it’s probably not fair but life isn’t about being fair.  I’m not really sure what life IS about but it sure the heck ain’t about being fair!  And if for whatever reason you think somebody shouldn’t use the word “autism”, remember that they probably didn’t decide on their own to describe their child that way.  They probably have at least one professional giving them the diagnosis and quite likely a team of therapists, teachers, and aides working with the family.  And if you really feel the need to say, “But PDD and Asperger’s aren’t REALLY autism” then please consider biting your tongue and being smug later.  It is a spectrum disorder that includes many individuals and, like all individuals, each is unique and wonderful and has their diagnosis for a reason, whether it’s visible to you or not!



Posted on May 4, 2012, in Asperger's, Autism, PDD-NOS, Riley, Sherry, Tyler and tagged , , , , , , , , , , , . Bookmark the permalink. Leave a comment.

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