Tuesday, November 19, 2013

My Child is a Victim of Your Fear-Mongering

Yesterday I read a few blog posts that featured kids talking about what being autistic means to them. They were positive in their descriptions, and readers ate it up. I wanted so badly to participate, but I didn't. Not because K is unable to do an interview, but because I knew it wouldn't garner the same results. 

I knew K would probably describe autism as a bad thing. 

I didn't want to write about it, but an email from a friend made me realize that it was something I had to share. Something a lot of us are dealing with, due to forces beyond our control. Because we can't be with our children every second, protecting them. I've talked a lot about how viewing autism in such a negative way can affect those living with the disorder, but what better way to really show you than to relate it to my own child. 

Since K was 3 (maybe before), she has had some incredibly negative experiences. She was treated poorly by those she (should have) trusted most. People who didn't try to understand and accept her, but instead punished and ignored her. Being aware that you are different can be a curse when those differences are pointed out as your greatest weaknesses. When every therapy you attend is meant to change the person you are, because the person you are is broken. You can only do so much as a parent. The truth is, when a child is attacked from all sides, when she doesn't feel comfortable anywhere, those experiences set in deeper than anything you say as a mom. 

And that kills me.

I have seen firsthand what happens when autism is viewed as something that must be eliminated at all costs. When a child is viewed as a drain on resources. As a difficult kid, who needs to learn how to be like everyone else. Who is told what to say and how to act, because what comes naturally just isn't right. I've tried to put myself in K's shoes, and it's so, so hard. I can't imagine what it must be like to constantly pretend to be a certain way in order to gain approval. In order to be rewarded. In order to stay safe. 

I am out there screaming from the rooftops that the way we view autism needs to change, because I see how the way we view autism now hurts my kid. So, no, I am not naive to believe things could be different. I am not living in some magical world where autism is wonderful, and my child is adored for her differences. I am living in a world where my child has been beaten down because she is unable to pass, and I am scared where this path will lead as she gets older. 

I don't want K to hate herself. I don't want her thinking that being autistic means she's a bad kid, or someone unworthy of love, acceptance, or happiness. My child understands there are those who don't like her because of how she behaves, how she thinks, or the way her body can betray her. Sure, we have moved mountains to change her environment. I've changed my own opinions about autism when I saw what was happening to my kid. When I stepped back and stopped focusing on me, and started focusing on K.

But, a lot of damage was already done. It will take time for that to heal. I will work tirelessly to make sure she finds a way to be self-confident. That she knows she is the wonderful, beautiful, smart, worthy-of-all-good-things in life, person I see. And that she knows being autistic isn't something to hate, or something to be hated for. 

So there will be no cute or profound interview here. Not yet. But, I'm working on it. I just wanted you to know that people are affected by the messages of fear tossed out to illicit donations and pity. By those only seeking a cure for this epidemic called autism. By the way society treats autistic individuals, because some need to spread intense negativity at every turn. 

I know because my almost 10 year old has suffered for it. And it needs to stop. Now. 

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