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About those numbers…..

March 20, 2013

“If you don’t like something, change it. If you can’t change it, change your attitude. Don’t complain.”
― Maya Angelou

1 in 50. Once again, a new “study” released, finding a supposed increase in autism rates. But really? 1 in 50? It was a phone survey of parents. So that’s first assuming that a proportionate number of parents actually wanted to participate in the survey…

I hesitate to write about this, because I feel very unimpressed by it, but I know folks are going to be asking me about it, so if I write here, I won’t have to repeat the conversation over and over. Well, that’s the theory anyway. 😉

First, I have read of people being shocked and saddened by these numbers. I’m not. I’ve heard of people saying it’s over-diagnosed, that it’s somehow fashionable to have an autistic child. I don’t buy that either. Even if some doctors are handing out diagnoses like lollipops, it hardly makes up for the huge numbers of families that don’t even seek a diagnosis because of the financial costs involved. They are numbers on a page. They are what they are. Just numbers, right? Really it doesn’t change a whole lot about the individuals behind the numbers, but nobody’s focusing on them right now anyway. I said it. It’s true. Nobody in the media, or the CDC is trying to help these 1 out of every 50 human beings who have autism. Instead, they are just running around in circles, screaming “1 in 50!” like their hair is on fire.

We require wheelchair accessibility in every parking lot and and every public building. But supports at Church for autistics and their families to be able to fully participate just like the deaf guy up front with the American Sign Language Interpreter?  How about assistance at the mall or the grocery store, so that the autistic person can manage to be at least as independent as the old lady using the electric scooter grocery cart? Parking for expectant mothers, yes. But a parking area for autism families shielded from having to cross a lane (or five) of traffic, so that a parent can get their child safely into a building. No, we don’t bother with that, because we don’t see those people. They are largely invisible to us, hiding in the back row, or just giving up and staying home. We hear about those numbers, though and we pray about the “epidemic.” But we don’t take the time to sit back and listen, really listen and understand the people behind those numbers. That many of these parents and autistic adults are isolating themselves after years of being trained by society that their behaviors are not acceptable and require explanation.

Does the world have to be so damned inaccessible for my kids? Do they have to have those noisy chairs scraping the floors in the food court at the mall at the same time as they are playing music videos on about fifteen TVs, next to the multitude of neon and florescent lights advertising the variety of different foods, all their smells mingling in the air, while the preteen beauty queen insults the awkward teenager who is stimming at a table trying to hold it together during this all-out assault on his sensory system? Does anybody really enjoy that? I have to believe that some improvements can be made in our general society that would genuinely help autistics to be more enabled than disabled, and would at the same time, be quite agreeable – even pleasant- for the rest of us. This should be a no-brainer. This should be simple. Turn off the TVs. Put those little felt pads on the bottoms of those chairs. Teach the beauty queen some manners. It can’t be that hard. It shouldn’t be so hard for kids like mine to get a snack at the mall.

So, if it is 1 in 50, maybe that’s our in. Maybe that’s how we start the conversation. Maybe that’s what it takes to get noticed. Maybe 2% of Americans and their families and friends, speaking together – instead of with all of the division that has been affecting our community – Maybe that’s how we finally get heard. It’s not about a cure. It’s not about more research. And for goodness sake, it’s not about vaccines. It’s about right now. Because right now, I can’t take my kids to the food court at the local mall to meet their friends. Right now, Sunday mass can change quickly from a prayerful experience to a meltdown in triplicate with little old ladies and their disapproving looks. Right now, I can’t take my son shoe-shopping. Right now, my kids are in danger every time we park our car and try to cross the lane into the grocery store, mall, doctor’s office, or restaurant. Right now, I can’t send my children to a “regular” school. Right now my children have to learn how to navigate your world, while you refuse to even acknowledge that theirs exists. This is not about fixing autism. It’s about fixing society. My children are not broken, or defective. But perhaps, if we cannot accommodate this growing population, then we, as a society, are.

My ones in fifties :

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8 Comments leave one →
  1. March 20, 2013 8:40 pm

    Amen.

  2. March 21, 2013 5:22 pm

    I love the paragraph where you talk about supports at church, the store, etc. yes!!! This is a very well-written post!

    • March 21, 2013 5:29 pm

      Thank you! I just wish the “powers that be” would listen… Someday. Someday soon I hope.

  3. Sarah Taylor permalink
    March 22, 2013 2:14 pm

    Well said Erin!

  4. Life&Ink permalink
    March 22, 2013 7:33 pm

    You sure packed a lot into this post Erin! Got a little say about this, huh! 🙂 Good grief I don’t know where to even begin. There is so much we experience as mothers watching our kids cope with their environment. When Ted was little I went from wanting to scream and change the world to just wanting to cry. I think what aggravated me the most was when the places that were supposed to be there for him, such as school, and when they weren’t, when they wanted TED to change rather for THEM to change. That was when I got pissed off the most. I was like NO, you are the adult, you are the educator, you can bend, you can teach him and you will, that is your JOB. So what if he puts his head down on the desk, that is how he copes, why in the world do you INSIST he keep his head up? Why are you essentially picking fights with a child? To what end? UGH! Then at places like church, well we gave up there. When I asked the youth minister to watch out for Ted when he was with the other kids, if he saw him struggling, I asked if he would spend some time with him, coach him a bit, he was there for the youth after all, and when he told me, “I can’t do that” and then suggested another church in town that might have someone who knows about autism, maybe they could talk to Ted when he struggled. I was like, when you asked me to teach Sunday School I said “Yes, of course.” It was what I could do to give back and every week for two years I taught Sunday school for you, never once complained, now this once, I ask something of you and you tell me you “can’t” because you don’t know autism. Well that is when I left the church and never returned. Okay, now you got me going! Girl. Okay, think happy thoughts. Front porches, swings… ahhhh….. 🙂

    • March 23, 2013 2:24 am

      Yes, front porch swings…. Happy place…. 😉

      But you’re right. It drives me crazy when, for example, a therapist tries to tell Joyce to stop flapping her hands – she’s not hurting anyone, get over yourself!- or demands that Troy look them in the eyes when they are talking – does it really matter? Why do they have to change to fit someone else’s version of normal? I’m good with them learning coping skills. Perhaps the rest of the “typical” world should learn to adjust just a bit too…

      Back to thoughts of swings now… 😉

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