Tuesday, April 2, 2013

I'm Not Blue About Autism

Today I went on a college tour with my eighteen-year-old son. He's a fascinating person. He sees things in ways I would never see them. He does things I'd never think of doing.

I still remember the time in middle school when he got bored during library time, so he translated his history assignment into Chinese. (His teacher of course was amused, but made him re-translate it back into English before re-submitting it.) One of many fond memories I have of his childhood.

So, imagine my excitement when I learned today that the school we were looking at actually offers classes in Chinese! I know that secretly, it excites him, too. I saw the smirk on his face.

Things haven't always been easy for us. I'm not meaning to gloss over that. Sensory overload was tough to understand and accommodate at first, to say the least. And I certainly understand why people find autism puzzling. (And highly recommend Temple Grandin for helpful insight.)

Oh yes, if you haven't guessed already, my son does have a diagnosis of autism, at least from the Psychologist. If you want to get technical, he has PDD-NOS with medium impairment, diagnosed by a Pediatric Specialist when he was almost 3. Though in working to understand him and help him, his "impairment" is now considered mild.

I mention it as an afterthought because my son is himself first. Autism explains why he doesn't catch on to certain ways of standing and certain social nuances. It explains why he can be disorganized about some things and won't always speak up for himself when he should. However, autism does not define my son.

Today, I'm going to say something that I've been sitting on for about 6 years. I think it's taken me that long to get the backbone to say it and not care about the consequences. In fact, I already posted something on Facebook and some of my friends there are not happy with me!

So let me clarify right from the beginning...  I know that people mean well. They post photos with puzzle pieces and/or blue lights because they know and love someone with autism! I get that, believe me!


But, there's more to the story...

AUTISM SPEAKS DOES NOT SPEAK FOR ME NOR MY SON!

That feels good to say! Please let me explain...

I have NEVER secretly hoped my son would accidentally wander off into a pond and drown. I have NEVER considered driving off a bridge with him in the car, only to be stopped by the thought of my "normal" children still needing their mother.

And I'm concerned that the "cure" for autism will most likely look a lot like the "cure" for down syndrome.

Confused? I'll let someone with autism explain, because their voice is what has been missing from the conversation all along (or at least for the last 6 years):


Why I am against Autism Speaks, by I am. I am. I am.


Oh, and might I recommend Autism Acceptance Month instead?

 -rg-