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April is Autism Awareness Month, autism, LISA'S POSTS, posts that might get me killed, Spectrumville
This weekend was World Autism Awareness Day, so of course I went out to promote some awareness. That is if dragging my autistic kids to the mall because I desperately needed new shoes and then letting all the other shoppers watch as they screamed for smoothies at the top of their lungs, rolled around on the floor with their feet in the air, almost lost their fingers trying to wedge the automatic doors closed, bellowed “Pee pee in diaper! Pee pee in diaper!” to the entire sportswear department, and groped the legs of various random strangers could be considered promotion, then yeah, I promoted the hell out of it. I assure you, everyone in the Nordstrom wing of the mall was very aware of us. I spread that sort of “awareness” on a daily basis.
I just doubt that anyone is aware that it’s autism. Mostly because I never tell anyone.
I’m not totally sure why I never tell anybody that my kids have the spectrum disorder that dares not speak its name. I’m not ashamed of my children and I don’t really care about the opinions of strangers, I think I just don’t have the energy to deal with the awkwardness that follows that sort of a conversation. It’s like when the cashier at the grocery store asks you how you’re doing and you automatically respond “Fine,” even though it would be more accurate to say, “I’m feeling really depressed and sort of guilty because I just ate an entire box of cookies, but my PMS is seriously killing me and I couldn’t help myself and I think I’m retaining a lot of water. How are you?”
Sort of makes you cringe a little bit, doesn’t it? Now imagine the line at Jamba Juice with Michael jumping and flapping, and the clerk says, “Wow, he’s pretty excited for a smoothie, huh?” I could say, “No, he has autism and his poor little nervous system can’t handle all the excitement, so what you’re seeing is his own brain electrocuting him over and over again. Also, the blenders are sort of loud and he can’t sort out the sound and it overwhelms him. Plus he doesn’t know where he is in space and he feels like there are bugs crawling all over his skin, so it’s hard for him to hold still. And we’ve had to wait almost two minutes for our order and it’s taking every ounce of self control he has not to flip out because he’s so impatient he’s about to have a full blown anxiety attack over it.” Yeah. Or I could just nod and smile and agree that he loves smoothies. Is it really so bad that I chose to take the easy route?
Frankly, I don’t have the energy to deal with that level of social fallout every time I mention to people that my kids behave the way they do because they have autism, so instead I just let them make their own assumptions. When people ask Mikey how old he is and he just stares back instead of answering, they assume he’s shy. When Eric starts running in circles and giggling like a maniac, they assume he’s had too much sugar, and when my boys meltdown and start screaming in public, they assume I’m a bad mom who doesn’t know how to discipline her children.
My husband tells me that I need to buy some puzzle piece jewelry because he thinks that if I’m wearing a jigsaw piece necklace everyone we encounter will automatically know that our kids are autistic, instead of just assuming that they’re retarded and/or spoiled brats, like they do now. I don’t see the point. I figure that if a person knows what that symbol means, they already know about autism and I don’t need to make them any more aware than they already are. (Admittedly, if Tiffany & Co. started selling autism jewelry, I might change my mind…I like nice things, so sue me.)
The problem is reaching those people who don’t know about the puzzle piece yet, the ones who have never seen autism, even though they’ve probably witnessed it a hundred times and thought it was something else (like bad parenting). Those are the people we need to make aware, and I’m probably a bad Spectrumville advocate because I let all those “teachable” moments pass, but for some reason I just don’t seem to have it in me. So in the meantime, I’ll contribute by bringing my children into public. They’ll continue to shatter decibel levels, ignore boundaries and personal space, and make general spectacles of themselves, and I’ll continue to hope that somebody else (preferable somebody with more energy and tact than me) will come along and explain it better than I do.
I just don't think it will fit me very well.
Laughing Through Tears 
Reblogged this on Me, You, Wine, Cheesecake, and Autism and commented:
and here is another… i want this shirt BTW
My husband is often afraid to take our son out – most of the time, our son behaves pretty well for a 2-year-old, let alone a 2-year-old on the spectrum – but those moments when we’re about ready to go out & something goes haywire – ends up killing the chance of feeling safe going out. And then there’s the times when our nerves are shot & if our son melts down, I will end up probably having an anxiety attack myself & sobbing all the way home. But I do really still try to go out very often – because being locked in the house w/ a bored & frustrated spectrum 2-year-old is way worse.
Thanks for sharing this- my son went through a thigh grabbing stage, too, and it was such an interesting way to meet people 🙂 But I continued to take him out, and now that he’s 20 he is very competent in public. I still have to remind him to keep his hands out of his pants, but he isn’t on the floor or grabbing ladies body parts, so I’m good. I don’t tell people he’s autistic either. Sometimes I will say, when someone speaks to him and he doesn’t answer, “He doesn’t talk much”. Because he is listening, and I don’t want him to feel bad about how he is. We have a good time, and we go out for fun and, yes, it’s enjoyable!. So, persist. If you don’t, no one will.
Well done never quit taking your children out. They deserve the same respect everyone does. I get annoyed with the people in the store that give me evil looks when they see my 15 year old autisic son sitting in the middle of the store pounding on the floor. I have started to look at them and say he has autism what is your excuse.
Thank you for your posts.
I clicked through from your listing on Babble and am very glad I came across this post. I am a non-puzzle person. I know a little bit about autism – a very little bit, but after reading this I know a whole lot more.
I can only begin to imagine how hard it is for you in those situations. I have my own – very different – struggles and I know that feeling of not being able to explain why I just can’t do something. I don’t at all blame you for not delving into the details.
Thanks for sharing this.
Deja-vu…. In one grocery shopping trip a woman marched up to me and told me to control my children or leave the store. Next an old man told me I needed to spank my kid to get him to stop screaming. Instead of telling them about autism I told the woman ” I will leave the store when I get my groceries” and I told the man “I somehow doubt that hurting my child will stop the crying and screaming.” Of course my nerves were so shot I was crying by the time I reached the parking lot. Ugh. Eventually I gave up taking Lurch out in public. I don’t think that was the best thing for him. Carry on lady and raise that awareness!
Lisa, One of my very favorite posts from you. So true, and so funny! And you know if you took the time to explain autism to a “non-puzzle-piece” person, one of your children would probably run off!
There are moments, and there are ‘teachable moments’. Sounds like you’ve got the difference pretty well figured out. We’re in awe of your mommying skills.
At least you don’t sequester your kids at home, because you can’t handle taking them out. It’s sure not easy, and we’ve all been there. And yes, lenghty explanations are a major deterrant to spreading awareness.
This is a great post. Well done for taking your children out even when their behaviour isn’t as others might like, they deserve to do the same things as any other child and you are providing that for them.
We stopped taking out child with Autism out and it was a mistake, now she has no idea at all how to behave, so keep going as you are.
Lynn