xmlns:og='http://ogp.me/ns#' Yeah. Good Times.: What is this "autism" you speak of? I was not aware of that!

Friday, April 1, 2011

What is this "autism" you speak of? I was not aware of that!

Disclaimer: I keep writing and rewriting this because I can't seem to make it not sound like I'm an asshole. So, I decided to stop trying and just start with an apology: I'm sorry I sound like an asshole here. This is just how I feel and I apologize if you're offended by what I say. 

Disclaimer #2: Please feel free to disagree with me, by the way. We're all entitled to our opinions and I have NO problem with you telling me yours. 

Today is the first day of Autism Awareness Month. Tomorrow is World Autism Awareness Day. You're supposed to do stuff like make your Facebook profile picture blue, or put a little twibbon in your Twitter avatar, wear a blue shirt or get blue light bulbs for your house (that one is actually pretty cool. Hubs, can we get blue light bulbs for our house???)

I'm not going to do any of those things. (But I totally support those of you who are, by the way; hence the asshole apology above).

If you're reading this blog, following me on Twitter or one of my Facebook friends, chances are good you're already pretty aware of autism; I'm not really sure that adding a twibbon is going to change any of that. I understand the purpose of the month, though: to get people talking about autism and therefore raise awareness! (oh, and also so that Autism Speaks can have a great fundraising month). I'm sorry but I'm just not a believer in Slacktivism. I don't see the point in having a blue Twitter avatar. It already says right there in my profile that I have a kid with autism, shouldn't that make you kind of aware right there? If you weren't aware of autism, and you saw me walking down the street, would my blue t-shirt suddenly make you aware?

And why the color blue? Is that because it's the color of Autism Speaks' logo? Yes, I think that's why, since they're the folks behind this, aren't they? I have nothing against them, myself, but I know some autistic adults who say "Autism Speaks doesn't speak for me." Are we excluding these autistic adults from the whole "awareness" scenario as a result of our blue Facebook profile pictures? I don't like that kind of "awareness."

Thursday afternoon I was at school picking up the kids and a staff member stopped me. They're worried about her granddaughter and she had a bunch of questions for me. I stopped and talked to her until the bell rang when I had to go. This kind of thing happens to me all the time; people stop me, or they call me, or they email me, etc. I always take the time to talk to them, to tell them about my experiences and what I know, and I always try to follow up with them.

This is how I raise awareness about autism, and I do it every day; not just one day or one month out of the year. I'm going to do it next week and I'm going to do it in May, when Autism Awareness month has ended. And my Facebook profile picture is staying as is.

EDIT: So, after all my posturing, both Child 1 and I ended up wearing blue shirts today. Does it still count as awareness if you do it accidentally?



Comments (78)

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I don't think you have anything to apologize for. True activism extends beyond a certain month or week or day. You spread awareness by your actions, not by a picture. None of this makes you look like an ass, so don't apologize. You are a walking ribbon, or twebbon or whatever it is. That's worth more than doing some nominal shit...
1 reply · active 730 weeks ago
Love it. Glad I am not alone.
My recent post A Month of Awareness Ill take a year
1 reply · active 730 weeks ago
You make people aware everyday. A lot of people. I too don't get overly excited about a particular day or month set aside for awareness. I also don't own anything blue to wear. However, it is kinda nice to see a whole lot of people get involved. Even if it is just gonna be us "lifers" still doin it on May 1.
My recent post Man Crush
I agree and disagree! Is that allowed? I know I'm the new mom to this road we're on. I agree that every day needs to be an awareness day. My friends and family still have a lot to learn. But I'm not against setting aside a month to bring extra attention to the cause...for adults, children and everyone in between. They all need our support. And I think that blue light bulbs are a cool idea. Even if just makes a few people stop and say 'why?' at least we made someone learn. Right? Those are my thoughts ...take them or leave them. :0). No matter what...you're not an a-hole! That I know for sure!!
1 reply · active 730 weeks ago
I'm a 365'er myself, although we did get an awesome blue light bulb for our front porch!
1 reply · active less than 1 minute ago
I'm a full timer too. But did find myself wearing a denim blue skirt today. Perhaps that's Autism Speaks mind control at work ;)
My recent post Tragedy and Autism Awareness
Yeah, I don't think you sounded like an asshole either. I did change my profile pic, but um...that's the extent of it. I'll talk about it anytime, anywhere, but it's like you say. Anyone who knows me and mine, knows probably a LOT more than they'd like to about autism. It's not bad to have a month, but if every cause gets its own month, they're gonna have to change the calendar. :-)

Now THAT'S bein' an asshole!
My recent post “Free”
1 reply · active 730 weeks ago
You bitch!

Hehe! I'm kidding! I feel the same way you do. I have no problem with all the autism awareness activities. I feel I do my part as it is though! I'm not going out of my way to do anything. On the other hand, however, tomorrow happens to be April Fool's day!
My recent post Blog Gems-Old Favorite
1 reply · active 730 weeks ago
I love this post. I really do. And not because I e-heart you. Just because this is great. Where is the part where you sound like an ass though? Because I have "read" you when you sound like an ass and this is not one of those posts.
My recent post Disgusted
Haha... by the disclaimer, I thought this was going to be a little meaner.

I really kinda support ACTUAL awareness during this month... I don't think I spend a lot of time being super vocal about Autism with those who don't already understand ASD on a personal level. I also personally find, in this particular case, vague symbolism to be more effective than other, um, "ribbon causes." I mean, let's face it, I mean no disrespect to those affected by HIV or Breast Cancer, but Mission Accomplished, Awareness Raised. That's not really the case with autism. People for the most part genuinely have no idea what it really is, and might actually have their curiosity piqued when they see about 20 blue lights driving on their way home tomorrow to go google what it's all about, IMHO.
My recent post Negative Nancys annoyed by Bissfully Ignorant People
1 reply · active less than 1 minute ago
Totally agree with you. I am aware of autism already, and I think that most people who see my family become quite aware if they weren't already. Andrew is proof enough that autism exists, don't have or need a blue shirt.
My recent post Ode to the giant yellow bouncy ball
1 reply · active 730 weeks ago
Maybe I am just a sheep-like hippy but I just run with it. I know in my heart that I don't wish to exclude anyone. If the folks who don't agree with Autistic Speaks asked me to wear tartan for a month, I would do that too. I try not to get too political about this one. I love my autistic kid. I love my friend's autistic kids and I have friends on the spectrum. I like that they can feel celebrated. Because that is all I am doing this month. Same as every other month. I want to celebrate these fantastic peole that I have in my life. If I get a nod from other person wearing blue, that will give me a happy buzz. When people feel part of something bigger than they are themselves, I feel that cannot be a bad thing.
1 reply · active 730 weeks ago
Kelli @ No. 7's avatar

Kelli @ No. 7 · 730 weeks ago

I don't think this was asshole-ish at all. I'd say more about the ribbons, bracelets, colors, bla bla, but I'd sound like an asshole and I'm more interested in people who can educate vs. pose.
I was expecting very large ass-hatery with your pre-apology. Now I am a little disappointed. Lol

Personally I am forcefully using this month to try to get througgh to my family. We have had the boys officially for two years now and no one in my family has even read a Temple Grandin book. Trying to explain to them the difference between functional IQ and echolalia, that "high functioning" doesn't mean they are brilliant in the typical way, no - they don't have a "rainman" talent, etc are all things that I have worked on with my family. This month, I am really going to be actively "ministering" and preaching the Gospel of Autism to my family. This month just gives me the excuse I need to keep putting these things in font of them.

But, yeah, I am so fucking aware of autism...puhlease!
My recent post Get Away Get Away- Now!
1 reply · active 730 weeks ago
I don't think this comes off as asshole ish either. While I believe every day should be used to educate about Autism because I live with Autism every day I have found that many communities do not do the same thing. A few months back I sat at the local hospital waiting to get my daughters blood work done for Fragile X and all that other crap we had to do. The woman next to me struck up a conversation with me. Her child was a little bit younger than mine (and not her first, she said she had a 6 year old) and I told her my daughter had Autism. She asked me point blank, "what is that?". So while I think the general educated public knows about Autism, there is a hidden part of world that does not know anything or is in denial about it.
1 reply · active 730 weeks ago
(music) Jillsmo, you don't have to put on the blue liiight...
My recent post Talking Too Much
1 reply · active 730 weeks ago
*raises fist to the sky* right on.

You know, that Autism awareness thing ain't for us. its for all the normies that need something to "feel" about. I'm taking some time this month to focus my blog a little bit, but that's all. And if i don a blue shirt, it's because the black one is in the wash. ANd i think we're getting a blue light for the porch--but only because it will go with the green one and red one elsewhere around the house. And Lord knows i WON'T change it back May 1.

keep on fighting the good fight sista.
My recent post scrilla!
1 reply · active 730 weeks ago
I get what you're saying, really I do. But I did do a post about lighting it up blue. Not because I give a shit about Autism Speaks. And I do walk the walk every day, hell, every minute of my life. But I do it because all I need is one self-absorbed suburbanite to say, "why is your lightbulb blue", and I can tell them it's to spread autism awareness. Or one random reader that stumbles upon my site to give more than a passing thought to autism.
My recent post Just The Way You Are
1 reply · active 730 weeks ago
Plus, if people actually do it, it will be nice to see how many brothers and sisters I have out there because, honestly, most days I feel utterly alone. It might not be that way for others, those with kids that are easier behaviorally. Mine is not easy. When I walk the halls at school, I am not a hero. I am the mom of the kid that other kids don't want to play with, and teacher's hope like hell they don't get in their class. It's a lonesome walk. Maybe my blue lightbulb is just a big "fuck you" to the world, that no matter how much it sucks, and no matter how hard my kid is, our light won't be extinguished. Or maybe I'm just idealistic.

You're still my BFF....

My recent post Just The Way You Are
1 reply · active 730 weeks ago
If by "asshole" you meant "awesome", then I'd agree with you. XO
AMo
My recent post I am Mexican- hear me roar
1 reply · active less than 1 minute ago
If you're an asshole, then so am I because I wrote a post about this same thing a week ago and never published it because I was a-scared. You rock, sista.
My recent post In Support Of Parental Controls
1 reply · active 730 weeks ago
I need to introduce you to my BFF. She doesn't write often, but I'm hoping she'll pop in and share her thoughts on my blog some time this month. In the meantime, I think I'll pass on your blog to her. I think you two would get along fabulously.

You're not an asshole. Well, you are, but you're the kind of asshole people like because you're an asshole for the right reasons (and I'm really just seeing how many times I can use the word asshole). How is Light It Up Blue any different from posting what color bra you're wearing to support breast cancer? Or, telling people where you like to put your purse when you come home (still don't get that one). Instead, take the time to talk to that mom who is tired and frustrated and scared. Don't automatically judge the family with the child throwing a tantrum in the middle of Target.

A blue Facebook page is just a blue Facebook page.
My recent post Another Day in the Life
1 reply · active less than 1 minute ago
I don't like "Autism Awareness" month, mainly because those of us who are autistic don't get much air time at all. You get a lot of people talking about us, but not many people talking to us or listening to us. Plus, most of the stories are pretty negative, and full of misinformation, and paint our lives in pretty bleak, black-and-white terms.

Beside, what happens on May 1st? Do people magically become unaware again? I mean, more so than usual??

To be fair, I don't like any of the "awareness" months. I think we should be aware of the existence of other people all the time. But that's just me. :-)

My recent post Guest Posting at Healing- Empowering- and Thriving
1 reply · active less than 1 minute ago
Well, first of all, I adore you, as you know and could never in a million years think of you as an a-hole. In fact, the very idea that you think you MIGHT be is generally a pretty good sign that you aren't. Real assholes have no self-awareness.

As you may or may not know, I raged against Autism Awareness Month last year. And I still agree with most of the things you complain about: I'm not changing my profile picture. I AM getting a blue light bulb, but I have a cute outfit that isn't blue planned for the Spring Festival tomorrow. And I'm not sure how much a blue Eiffel Tower is going to do for Billy.

That being said, I live in Florida where a lunatic Governor wants to slash funding for our kids and adults with developmental disabilities. Our state does not require all insurance to cover autism therapy. And there are still a bunch of people I run into that think all autistic people are brain-dead mutes -- many of them very well-meaning, just ignorant.

For that reason, I've gotten on board with Autism Awareness Month this year -- in my own way. I've helped bring a pro-neurodiversity film, "Loving Lampposts," to our area. One of the great things about this film is it introduced viewers to happy, successful autistic adults. I'm sponsoring an art contest at Billy's school, because I wanted to start the conversation about autism with his peers before he gets to the age where bullying (outside Disney World) is a real problem :-)

I'm helping organize a talk about developmental delays at our local MOPS group, and I'm joining a walk to the Capitol to protest budget cuts and introduce legislators to MY autistic child and let them explain to his face why they want to cut his services. (Of course, if they do, he'll probably respond with a few verses of "Ding Dong the Witch is Dead" or the entire script of the Veggie Tales Easter Special, but that'll probably be all we need to make our point :-)

Anyway, just want to say that all autism awareness isn't created equally. But like Big Daddy said, the real awareness happens May 1 ... and the rest of the year.

Love ya! Merry Autism Awareness Month!!!
My recent post Love your local lamppost
Autsim is something we deal with every day. It's a lifetime journey and I hope people can see how we fight and love our little ones for who they are regardless of what they have or don't have. And Idon't think you're an A-hole. I think you love your kids with a passion and it shows.
My recent post All Hail the Almighty I-Pad
1 reply · active 730 weeks ago
Really? You're gonna have to try harder to be an asshole - cuz this post ain't cutting it! I do NOT have a love-fest with Autism Speaks. I don't want to highlight one month over another for the same reason everyone here does not. Our autism awareness occurs when we're breathing and lives with us forever. That said, I have done a post about the month for people who know me but don't regularly read about it but may be curious. I've tried to dispel some myths about autism. We bought the blue bulbs and our house looks like Halloween but hubs and I are just baiting our homeowner's association to come tell us to take them down!! (Then you'll see an asshole - me!!) But look - in the end - you talked about it and you wore the blue shirts so technically - you've been sucked right in with the rest of us...
My recent post Don’t be an April Fool -35 Million People Worldwide Are Affected by Autism – Are You Aware
2 replies · active 730 weeks ago
Anything AWARENESS sort of crawls up my ass sideways.

Is more awareness going to change my child's life? Make it any easier? Prevent another child being born with that particular challenge? Not bloody likely.

By the way.

Yesterday was Congenital Diaphragmatic Hernia Awareness Day. You totally knew that right?

Yeah.

And it was my fucking Congenital Diaphragmatic Hernia survivor's fucking birthday too.

YEAH!!!!

My recent post Eight
1 reply · active 730 weeks ago
Totally agree with this and I do think that all of us parents will be the ones still standing next month and the next month because our blue lights are never going to burn out. What I do like about the month though is that somehow it joins all of us autism people a little bit more. I liked seeing autism all over my twitter and facebook stream today. Makes me feel more at home.
Love you and your blue shirt, even if you didn't mean it.
1 reply · active 730 weeks ago
Hi. Um, I think I'm too fired to type more than that... just... Hi. (And I got my own ambivalent about AAM post up about 5 minutes ago.) (And you are so not an asshole. Just honest.) (OK, I lied, this was more than just "hi.") (I'm sneaky that way.)
My recent post Y is a Crooked Letter
1 reply · active 730 weeks ago
I too am disappointed by the lack of assholery after that apology. I did turn my blog blue, but not because of Autism Speaks (maybe indirectly), but because that's the color most people associate with autism (most people who don't really know). I too struggled with a post for today. I think the reason we struggle so much is because this day, this month, is dedicated to a topic that we write about all the time.
My recent post April – Month of the Military Child and Autism Awareness Month
1 reply · active 730 weeks ago
The blue cupcake frosting that splattered out of my right nostril onto the head, neck, and collar of some unaware man in front of me at a coffee shop, as a direct result of reading your posts, does somehow make you a participant in the "lightin' it up blue day" (holy huge run on sentence, batman). It also makes me gross. However, since your participation was indirect, it sorta puts you in the Kevin Bacon, six degrees of separation league of things. Sweet Jesus, how great it would have been had blue frosting splatter guy actually been Kevin Bacon. Thanks for laughs!!
1 reply · active 730 weeks ago
God, you're an asshole. <3 Am I the only one that thinks that little sideways heart thing looks like dingleberries? Anyhoo, that's not why you called. I love to rail against things, but try not to when I think they are generally well-intentioned. Unless someone can show me that Autism Awareness Month is actually doing harm...meh. Now go suck on some dingleberries. And make 'em blue in honor of World Autism Awareness Day.
My recent post A Little Peep-Out on The Talk
3 replies · active 730 weeks ago
My sister has two autistic children. She nailed me on the phone today about wearing blue and I sorta got a little bit funny about it and gave her this big lecture about how I support my nephews as the individuals that they are, not some blue blanket of autism. I was afraid I hurt her feelings and apologized for not being a great sister on that one.....mostly because I thought I was alone in my feelings and I don't have any autistic children, so in this case being alone is a very bad thing. I support all causes....autism, gifted, down syndrome,...you get the point......but it's by accepting those affected for who they are as people.....not for what they are diagnosed with. Just my feelings on it. I did not wear blue today....but my 3 year old was blue as he painted himself with my nail polish before we left.....
1 reply · active 730 weeks ago
Thanks for stopping by my blog to read what the Domestic Goddess wrote for her list of things not to say! I have to say I did not buy a blue light bulb, but I did do some other things. Probably because I am a recovering first-born people-pleaser. However, I, too, do autism awareness year-round. I think most of us do if we live with it. I am enjoying getting to know others in the autism community.
Great post! And no, you did not sound like an asshole, nowhere near it. Try harder next time will ya, I was sort of disappointed! :)
As for the blue tshirts, be sure to tell all it was purely coincidental.
Love how you brought humour into this post.
This was really a great read.
My recent post So lets pretend this is my journal
Yummommylicious's avatar

Yummommylicious · 730 weeks ago

I totally adore you, not just as a mother, but as a whole person who stands up for what she believes in. I just want to say that, this is not a-hole-ish at all, not even a bit!
I don't think you sounded asshole-ish at all. You said what you are thinking without managing to insult others. Good job!
I don't really give a fig about Autism Speaks, so I'm not defending them by all means. With that said, I believe they picked blue because of the 4x more boys than girls thing. At least that's what the news said.

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