Tuesday, February 5, 2013

A puzzling piece

Editor's note: I am honestly not trying to offend anyone within the Autism community with this subject. This is only me, as a parent of an Autist, stating how I feel about those puzzle piece awareness symbols. 

Unless one is living under a rock, then one would know that the symbol for Autism Awareness is a puzzle piece, or a series of interlocking pieces, or even a series of puzzle pieces with one missing, sometimes a piece just hovering over it's space. Should be a small thing, right? Well, not so much, because there are also the slogans. Personally, I find some, if not most, of the slogans associated with those puzzle pieces incredibly insulting to my son. Here is a small sampling:

"Until the pieces fit.."
"..solve the puzzle of Autism" 
"Figure out the puzzle."

I could name more, but you get the drift, right? All of those slogans, while catchy, are just slightly <sarcasm> offensive to me. They're incredibly offensive to most self advocates, if recent blogger chatter is any indication. Actually, that's not true, it's not just recent, it's been going on for years. 

"I'm not a puzzle, I'm a person." 

I've read where some - NT and Autist - think that this is a very petty thing to argue over... but I disagree. Actually, that's not entirely true. Personally, I'm a fence straddler. I can see where the self advocates and even some of the parent advocates are mad. Being represented by a puzzle piece can be insulting, especially when those signs, jewelry, clothing (let's face it, anything you can slap a slogan on) show a piece missing or not fitting.

Just think, as a neurotypical, if someone were to describe you and anyone like you as a jigsaw puzzle with a missing or improperly fitting piece. This, to me, indicates that someone out there believes that you are defective. I don't believe my son or any other Autist is defective. Would any of us say (out loud) that, say, a breast cancer survivor is defective? Okay, bad correlation between Autism and cancer. How about ADHD? In this age of PC talk, how have we done this?

On my own flip side, I promote Autism Awareness Month (all year long) and wear Autism Awareness clothing or jewelry to put in society's collective face that someone I love, my son, is Autistic. It's my prerogative to do so and it's better, I think, than for a random person thinking him psychotic or worse, stupid, when he or she hears Morgan "peeping" a yes to me or sees him stim.

How does he feel about being represented by a puzzle piece? Well, Morgan loves puzzles and patterns. To him, I think, this is just a cool thing to be represented by. However, he doesn't seem to care for the imperfect ones. Also, I'm picky... See that picture, up in the right hand corner? That's my whistle, my lanyard, my awareness ribbon. Please note that all of those pieces are perfectly matched up.  I won't wear or promote any puzzle "stuff" that isn't perfect. So, maybe Morgan has picked up on that from me.

Do I believe that Autists are perfect? No, they're human, just as my son is and therefore prone to make mistakes. However, as I said, they aren't defective.

My thinking has been that while, yes, an Autist's brain is a mystery to the neurotypical world, a puzzle if you will, it is not the Autists that are missing the pieces, it's the neurotypicals. I've always thought that Morgan, and those like him, probably have an extra piece to their neurology that I and scientists weren't figuring out. Hence, the name of my blog. I'm trying to decipher my son. It's alright with me if I never get my answers because I'm finding the journey very fascinating. Plus, I don't look at my son as problem that needs to be solved.

I think though, this time, with the puzzle pieces, the Autists might beat the neurotypicals to an extent. I have come across several blogs talking about "taking back" the puzzle piece as a symbol for Autism. Changing the singular puzzle piece color of blue that we all associate with Autism Speaks to something else. Whether this was in jest, I do not know, but they have my support. 

Autists are speaking and it's time we listen to them

How is it we have an entire movement for awareness and acceptance when a good majority of the people that seem to be leading it aren't listening to the people that matter- the Autists? Granted, we have some Autists that are gaining ground and fame. Heck, our government even let <gasp!> two Autists testify during last year's congressional hearing on Autism! Of course, they were railroaded... and called burdens, along with the rest of the "Autism epidemic/disease"- good going on that one, REALLY... but I guess that's not supposed to matter since this movement, that hearing, is for  them, correct? (Sorry, that was snark)

However, parents and "experts," we're missing the less famous Autists. The ones whose opinions should count the absolute most to us- our kids, our family members, our friends

We need to know that we, as a society, do have eloquent, or even non eloquent,  Autists to represent Autism Awareness. Yet, somehow, their voices seem to get drowned out by the fervor of neurotypicals, officials, parents and scientists alike. It seems to me, that any time an Autist, or a group of Autists, raises their voices loudly in protest, a neurotypical (or several/hundred/thousand) tell them, "Hush, you're not supposed to be able to feel that way." Or something to that extent. Is it any wonder, then, that a lot Autists don't appear too happy with a lot of neurotypicals?

I have a favor to ask of the Autists in the community that I am friends or friendly with. Please don't get angry with the neurotypical parents who are trying to learn from you. We're thick headed at times and are trying to unlearn years and years of our own rigid thinking. We look to you as what our children can become. You are our children's future inspirations; you are the trailblazers for equal rights. We're just wanting to fight along side you.

I have one piece of Autism Awareness jewelry, my mother-in-law bought it for me. I love it and Morgan loves it, as he does all of the interlocking puzzle pieces. Why? Because all my pieces fit together on it, nothing is missing, just as nothing is missing from my child. On the back, it is inscribed:

I wear this for my hero 

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