I've already eluded to my frustration with the national AutismSpeaks group and some of their stances on "give us money so we can cure Autism." That rhetoric does nothing to promote acceptance of children and adults who are on the spectrum. I'm not talking about "tolerance" because I am really starting to despise that word. ( I don't like "religious tolerance" either, those of you that know me are well aware). As a general rule I "tolerate" red lights when driving. I "tolerate" the fact that my car is out of service when I have to take it in for an oil change. I "tolerate" the dental hygienist putting that icky stuff on my teeth. And I'll "tolerate" standing in line to get into a bathroom. As a society must we really "tolerate" folks on the spectrum or how about we just accept them? Acceptance is meeting them where they are. Not "halfway" ....where they are.
Okay, I digress.
The point is I'm finding it more and more disheartening that some of these big organizations are not really moving the community of Autism forward, but seem to be dividing us more and more.
The history of how we got here is reviewed in a a blog post written by Michael John Carley. It's a lengthy post but in short it's a review of how we are destroying each other from the inside out. He talks about survivor's guilt ("my kid is verbal, yours is not") and belittling of each others journeys, fears, and pain ("oh, you have it easy, my story is far worse") that it's no wonder we can't move forward on some very important issues. "Pain is not a competition" should be a wake up call to everyone in the Autistic community and how we treat each other.
If that's not bad enough, we seem to be shutting out the rest of the world. I cannot tell you how many times I've seen lists and lists....
"The top 3 things the parent of an autistic child needs"
"5 Great steps to spotting a child with Autism"
"20 reasons to teach your children about special needs peers"
"5 places you will never see an autistic child and their family"
....I could go on.
My point is, these things don't really help us. They segregate us and confuse those who may not be in the Autistic community. It builds walls and barriers and does not really promote communication.
For example....
35 Things Not to say to the mother of a child with Autism
What? 35? Oh for heaven's sake! Should everyone keep a list? Are we supposed to pull out our lists when engaging in conversation....??
"okay, lemme just check here....looking, looking.....okay, I think I can say this................hi"
I've made this mistake before. I've gone down this road. When we were going through infertility treatments I was tossed into a whole different community. I shared something like "What I need from you and the things you can say to me" list to my friends and family. I thought I was being helpful. In reality I was being really stupid. There was nothing on that list that encouraged conversation. One of my friends (who I love and adore) said to me, "Uhm....this made me afraid to talk to you. I didn't know if I would remember what I could say and couldn't say." Yah, okay lesson learned on that one.
And so the 35 things is just silliness to me. And it's hard to share those sort of thoughts with my parent peers who are in the Autistic community. And I get it. I get why they are angry and frustrated and sometimes feel very alone. Our big "guru" organization isn't truly helping us, and we are biting at each other inside the community. And there's no doubt that people have said some VERY hurtful things to parents without meaning to or understanding why. Handing them this list, will not help anyone gain better understanding....and therefore acceptance.
Look, I'm full circle.
There is however a little nugget of gold on the "Evil 35 list" that is in such small print, it really is a shame.
As for something helpful to say. One mom shared this:
I'd been sitting on the sidewalk with B for about half an hour waiting for a meltdown to subside when a lady walked by and said, "Hang in there, Mom." I felt almost hugged by the inclusion of that statement. I wish I'd gotten to thank her, but I looked up and she was gone.
YES!! Let's do this!! This is a far more helpful, respectful and "we're all in this together" attitude that encourages dialogue and positive ju-ju. I wish I could convey what goes on in my head when Nea and I are out and about. Just getting from the car to the front door of a therapy session can be exhausting. I always have to hold on to her or she'll run. She has many items such as a weighted animal to carry, a backpack that she now packs with her most cherished items and the fear that any frustration may make her run to a wall and bang her head crying out, "It hurts!" I've searched the internet thousands of times to find the best bag, the best carry item, the easiest pack to make our walk be as hands free as possible. Most of the time I give up and put my phone and my keys in my pocket and call it a day.....grabbing Nea by the hand, putting on her backpack and lugging Karen (the 2lb penguin) into therapy. If even one person walking by said to me, "Hang in there, Mom" I probably would burst into tears at the amount of compassion that warms my heart.
So do me a favor today. Pay attention to the world around you, and watch parents with their kids. I don't care if they are on the spectrum or not. This parenting gig is a hard job and most days we are up to the challenge. But some days are just damn overwhelming. Just acknowledging another human being's struggle.....
Well,that's the road to acceptance.
great post Buffy! So many different ways to segerate groups of people who aren't "normal" instead of just accepting that we are ALL different. Kudos to you for being an involved parent. Hang in there.
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