(originally written & published on April 2, 2013 when my son was 10 years old & I was still married:-))
Today is World Autism Awareness Day. But as usual, within our autism community people are having debates about whether it should be “awareness” or “acceptance” or “equality” day.
And, as usual, within our autism community some people are shouting & fighting.
Perfect example, I posted an innocent picture on my Autism Daddy Facebook Page of some blue cookies my wife sent in for the teachers & students in my autistic son’s class with the caption, “The wife made these blue cookies and sent them in to the king’s school today to help celebrate youknowwhat day.”
And this was one of the comments:
What’s with all the “awareness”? With 1 in 50 numbers and crazy theories coming out (like old grandfathers, abused moms, too much tv, etc.), I think the “awareness” part is covered. Sorry, but what good are cookies at this point? Are the teachers unaware? Will this increase action to find the REAL cause? I’m stumped every year with this need for “awareness.”
Now, my wife didn’t do this to change the world…or to make the teachers more aware. She did this cuz she likes to bake and she likes to celebrate and be a part of things.
She dressed my son in red & made red cupcakes for Valentine’s Day.
She dressed him in green and made green cookies for St Patty’s Day (and we are not even Irish).
And today she dressed him in blue and made blue cookies for Autism Awareness Day.
And that’s probably about all we will do to “celebrate” the day and/or to make people more “aware”.
But for the people that say the outside world should be “aware” by now. You’re wrong. You’re living in your autism bubble.
To you and to me, it seems that autism is in the news EVERY FREAKING DAY. But that’s because we are seeking out that news.
Admit it, you have a google news alert set to feed you all the autism news of the day.
Or most of your friends on FB are also in the autism trenches so you’re FB newsfeed is filled with autism stories EVERY day.
Admit it you are obsessed with reading blogs written by autism moms & especially dads. 🙂
So, to you, it seems like the world is drowning in autism awareness.
But it’s not true. You’re only reading about autism if you want to read about autism.
If you’re a typical parent, and you watch the evening news every night, check out CNN.com a few times a week, and read your local newspaper every day you’re probably not that aware of autism.
Think about the types of & the frequency of autism stories that hit those sources on a weekly basis.
They are few and far between.
And the types of autism stories that do make the mainstream media usually fall into 3 categories…
1) feel good stories about typical people being nice to autistic kids like this new one from ABC News, “Autistic Girl’s ‘BrokenCheeseburger’ Story Goes Viral”
2) autistic kids doing great & surprising things like this old one from CBS. (this one has been spread around the web for over 3 years now) “Autistic Teen’s Hoop Dreams Come True”
3) As the person commented above, theories about causes or links to autism, like this one from a few weeks back, “AUTISM: UCLA study finds air pollution correlation”
And I’m not against any of those types of news stories. They are all valid and they all show a side of autism. But seeing maybe 5-6 stories like this a month doesn’t make you “autism aware” in my mind.
So I think having a day and a month where we try to be upfront with the rest of the world, and be even more present in the mainstream media is not a bad thing.
Autism Awareness Day & Month is really not for us. It’s not for us living in the autism trenches.
The Day & Month are for the rest of the world…to help them be more “aware”.
Having autism awareness day & month just forces the mainstream media to throw a few more autism stories on the air. And hopefully one or two will be different, and not fall into the 3 categories above. And hopefully one or two will get into the “1 in 50” number, make people more “aware” of the epidemic we have on our hands.
Again, I know, I know, you’re thinking, “It’s freaking 1 in freaking 50! How can they not be aware by now!”
Trust me, they are not.
And if I wasn’t an autism parent, I would not be aware. I would not be setting a google news alert to feed me all autism news stories. I wouldn’t be reading autism parent blogs. If I was a typical parent, I’d be digesting the autism news that I happen to stumble across while I’m looking for the sports section of the paper.
I wrote this in a previous blog post called “Autism Parents: How much do you expect peopleto deal with? How much is too much?”
I think if I was a “typical” dad and went into a family member’s autism home (or had them over my home) I would be extremely concerned & compassionate & would bend over backwards to make them feel comfortable and make any accommodations to make things easier for them…but once they left, I’d probably be “out of sight out of mind”
I’d get bogged down in my own problems & issues, which to the autism parents would seem absolutely minuscule. This is what happens to most family & friends I think…because when they are living in their own “shit”, whatever it may be…(my kid is failing spelling, my kid is 3 and not potty trained, my kid stutters a little) and it seems like a HUGE issue in their lives.
It IS a HUGE issue in their lives.
And their problems, as minuscule as they may be to us asd parents consumes all of their energy and brain power… and you are your situation are the furthest things from their minds…until they see you again… and see what your dealing with… and they think about how stressed they are over stupid stuff… and that’s when they say “I don’t know how you do it…”
Then they go home and forget all about and go back to their HUGE minuscule problems…
But that’s just life. There’s not much we can do about that.
Maybe as autism parents, we do expect way too much from the outside world. They are bogged down with what they feel are their own HUGE problems… and don’t think about autism until they see a news story about autism… or in April when their Facebook newsfeeds get inundated with autism awareness month crap… 🙂 Then they say “how do they do it” and then they move on with their huge problems…
And again… that’s just life. There’s not much we can do about that.
And I stand by what I wrote.
There really is not much we can do about that. That’s just life.
But for one month a year, and especially on one day a year, we can try to force some awareness down the typical world’s throats. So they SLOWLY become more & more “aware” of the impending epidemic of autistic kids growing up and leaving the school system, and having nothing to do and nowhere to go. (that’s a whole other blog post for a whole ‘nother day)
Now I know we shouldn’t have to force it down their throats, but we do. So for one month a year, let’s try to get all the stories out there. The high functioning stories & the low functioning stories. The medical stories & the insurance stories. The political stories. The poop stories. The inspirational stories. The good, the bad, and the ugly. Let’s get it all out there…and see what sticks and what resonates with the mainstream media and the masses.
That’s all I got.
So Happy Autism Awareness Day!
Now excuse me while I enjoy one of my wife’s delicious blue cookies that I stole from the Tupperware before delivering to my son’s school…
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I love this. I couldn't have said it better myself. I hear all the time that Im filling up my friends feed with all this "autism junk" that doesn't matter to anyone, but me. Should it be that way? Ofcourse not, but not much I can do about it. Here's the thing, Im not raising awareness to make you an expert on autism, to make you feel bad for me or my son, for you to even cure autism. I am asking you to be aware so you don't say and do cruel things to my child because you don't understand. I am asking you to be aware enough to make sure your children aren't scared of him or tormenting him when they don't understand what he does. I am asking for you to be kind enough to let us get through one meal, one party, one trip to the park or doctors office without staring, whispering, rude comments, critiquing my parenting and out of control child, giving advice on how to not raise such a bratty child without having to feel like we need to be on the defense and protect our child from you. I had a family member tell me that if I wanted people to not make comments I should make Jaks wear a shirt telling them what his "problem" is. Seriously? Is our world so evil that a child (autistic or not) has to advertise his strengths and weaknesses so that they are not ridiculed by ADULTS! Kindness should be a given, but maybe since it isn't a little awareness for those 1 in 50 families, would be a nice place to start. Thanks for posting Autism Daddy, as usual, I can relate. _Mandy Sims
This is exactly the point! Autism Awareness is not just telling people what the stats are. It is about what they say and do that can hurt parents and/or the children because they are NOT aware!!! Well said.
Exactly!!!! I agree with you 100%
Oh my goodness, you said exactly the way I feel. I don't want them to be "experts" - I just want them not to be so insensitive and say ridiculous crap to my son (or us, as parents). I figure, if they want to unfriend me, so be it! But even so, I hope that something I share/post will enlighten them just a bit so the next time they're out and they see some child (or even adult) having a meltdown publicly they take a moment to think that it's not deliberate. Or that the parent isn't a "crappy parent" (heard that so much lately) because I'm unable to calm him in these situations! I'm still new to this... I'm learning with my son - what his triggers are. How to help him. And more so than any other point in my 30+ years on this planet, I'm getting a thick skin and learning to speak my mind to be his advocate and help bring change and inclusion for him and others like him.
I have to say our family is soooo much like yours, I love reading your posts everyday.
That being said, I agree 100% with what you wrote above. Until people live the lives we do they will never know what we go through. So why not make them live it for a month *insert evil grin here ;)
Keep up your superb work.
And Happy youknowwhatday to you
Here is a link to my youknowwhatday's blog
http://artbylana.weebly.com/1/post/2013/04/lets-talk-about-autism.html
You hit the nail on the head! I love your reading your posts; this one especially. Giant miniscule problems indeed. And they won't ever understand unless they an asd child. -Kelly
I 100% agree with you !!! I think your wife is awesome for doing this today and I belive your son appricates her going to extra mile today.
Whatever word we pick .. we need to just not spend our energy in this fight we all have to fight to fight each other.
Respect is the name of the game :)Have a nice day
Very well said!! I get that stare of -"I don't know how you do it" all the time. Especially as a single mom my friends are no longer existent because they are dealing with their perfect marriages and typical children. They don't get that I can't reach out to them to "hang out" like I used to. And most have stopped reaching out to me. Their problems are to huge ro take 5 mins and see how me and my problems are. I love your blog and sometimes I would like ro slap people that make comments like the one above. Yeah I know that won't "do any goodness" but it sure as shit would make me feel a little better lol
Stephanie....what you wrote is exactly what I wanted to write especially about the "friends" part. Thank you for writing what I am feeling as well.
Great blog today and everyday, always brings a little humor or insight to our family.
Excellent read ! I couldn't agree more ! If everyone is so aware then why do so many of us go without ? Why do we still have to fight the insurance companies like it's another full time job ? Why is it so hard to get SSI, help with med. bills ? A babysitter once a month so I can go to the grocery store and come home with the right stuff, get my hair cut, sleep !! If everyone is so aware and know all my troubles than why aren't they beating down my door to help ?? Am I expecting too much since they're not "family", it's not their problem, not their kid. I don't want pity, don't want a hand out, but if someone else could just step in and say, hey I may not understand but can I help ? If you see me pushing a cart and trying to hold onto my son , (who is a foot taller then me and looks like he's trying to take flight) struggling with my list, while my cell phone is ringing non-stop, could you hold the door ? Could you move out of the way ? Can you stop staring ? Someone talking to Josh for two seconds, Hi buddy how's it going ? Whatcha drawling? Can occupy him for 5 min and make his day ! Hell I can unload my cart onto belt, clean out my purse and check my e-mails ! People don't understand our way of life, it's all about the kids, schedules, noises, certain places you can go, but only at certain times. Good Days, Bad Days, come around on a bad day if you think everyone is aware ! In fact everyone should be required to spend a week in an Autistic Household, watch Dora 60 times a day while the stereo is on , cause we can't miss classic rock, while he bangs, spins, and yells for no apparent reason, while throwing Popcorn. Where you hear "Stop licking the Dog" and "Don't answer the door without your pants on !" Honey Boo Boo doesn't have shit on us ! lol Should be "Autism Day, Have a Clue" Thanks for all your great posts ! Enjoy your cookies ! :)
Awesome post Kim especially about the licking the dog and don't answer the door without your pants on. My grandson is famous for standing in the window naked as the passerbys are moving along on their routines. These are awesome, awesome kids!! And families!!
Loved your reply! Thank you!
I think you hit it out of the park with this post! :-) I personally feel Awareness and Acceptance go hand-in-hand. I support everyone's choice to spread Awareness, Acceptance, Action, Celebration, etc.. as they please. I just wish they would use Respect and Kindness when doing it, so the messages received by the masses are not filled with negativity. By the way, the cookies look amazing, and I bet they taste just as good. :-)
Well said!
Our 14 year old son, with severe, non-verbal, aggressive autism, moved into a group home almost 2 weeks ago.
THE FOLLOWING WAS MY FB POST TODAY....
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REAL AUTISM AWARENESS
I had a discussion with a co-worker yesterday. I told him I was tired of all the "awareness" campaigns, that the world was "aware" enough and we needed action. He told me...
No, it's not... The world isn't nearly aware enough of autism. It's not aware at all of families like yours. People don't realize how all encompassing and devastating autism can be on a family. They may be aware that there 'IS' autism, but they are NOT aware of what autism IS.
It is hard to look at, but it's time the world really becomes AWARE of what autism really IS.... Maybe then, we'll see some action.
====================================================
The world needs to know about families like mine. they need to SEE and HEAR and become AWARE of how autism isn't just 1 in 50 kids... in 1 in 50 families. For us, that 7 people. Not just one kids, with minor social glitches.... 7 people living in survival mode.
Well said :)
Here, here.