Logo of World Autism Awareness Day, April 2, by UN (United Nations). Português: Logo do Dia Mundial de Conscientização do Autismo, 2 de Abril, criado pela ONU (Organizações das Nações Unidas). (Photo credit: Wikipedia)
I’ve always said that awareness is only the first step, and that it’s not ever enough to simply be “aware.” It’s certainly never, ever enough to be tolerant. What people think this month is about is slogans and slacktivism, Rain Man, and key chains.
The problem is that people don’t know because it’s invisible. You can’t see it. And it’s behavioral, so it “should” have a cure. Someone or something caused it. All we need is better parenting/medication/whatever.
::sigh::
For me, Autism Awareness has become synonymous with Autism Education. That includes educating myself as well as others about Autisms and the misconceptions people have about them. They don’t realize that it’s not about parenting or what’s involved in schooling. They don’t realize that it’s a group of disorders and that there are several comorbid diagnoses as well as additional health problems with ASD’s. They listen to whackadoodles like Jenny McCarthy and former doctor Andrew Wakefield are reliable and credible Autism specialists. They think people with Autism have no feelings, are incapable of emotion, don’t smile, don’t play, aren’t happy, and live in isolation.
People just don’t KNOW.
It’s a popular thing right now to post on your FB status. Well, it’s always popular to post that you support something or other on Facebook. You even get those passive aggressive and aggressive aggressive statuses threatening that if you don’t repost, you must not really care insinuating that you in fact support the evil that is the opposite of The Good You’re Trying To Promote. You can slap on a bumper sticker or donate a couple of dollars to some vague charity with a puzzle piece for its symbol. But they don’t educate themselves.
You’d be amazed at how many people sit up and lean forward when I talk about my daughter and how many questions they ask me. You’d be amazed at the hunger some people have to know more. Some people don’t care to know more than I offer, though. I know that when I leave someone after a conversation the chances that they’ll research more on their own is slim to none unless their lives are touched by someone with Autism.
The fact is that most people are comfortable being slacktivists. They’re comfortable “showing” support with what amounts to waving a flag. But if all they do is “show” support with a button or blue avatar, it’s only slightly less bad than someone who is actively denigrating disabled people. Show support, but be active in that support. That’s what I try to do.
But I do it year round.
[Edit: Please be assured that I'm not demanding that others advocate for Autism as I do. I'm speaking really for myself. I'm fired up about this and this is an internal conversation I've had with myself to motivate myself... this is not intended to shame anyone into becoming a formal or active advocate. But because I participate to the extent that I do, and because our lives are affected by Autism so profoundly, there are some serious emotions attached. It's not personal against the world. It just is and it comes with the territory.]
I think it’s wonderful that there’s an Autism Awareness Month and a World Autism Awareness Day. I honestly do. But for many people, that’s the only time of year that they ever think about Autism. It only exists for them at that time of year because that’s when they’re inundated with the puzzle piece ribbons and influx of articles and flurry of Facebook status changes and profile photo changes.
I don’t have that luxury. My daughter has Autism every single day. It affects my household every single day. It affects those who spend time with my daughter every day. It doesn’t turn itself off when she gets home from school. It doesn’t magically turn off at supper time or when I say “Bed time!” It never goes away and that’s just how life is.
I have a three happy, beautiful, intelligent daughters and one of them happens to have Autism. It’s a learning experience with a high learning curve every single day. It’s not easy for me, but I can only imagine how it is living inside her head. Sometimes she gives me a glimpse. Sometimes I envy her outlook… her Autism has given her a unique perspective and some pretty special skills. She’s taught me to be a better mother, a better person, a better human being. Because of her I have a much more open mind than I ever did before. Because of her, a whole world has been opened up. Before her I didn’t have a clue as to what Autism meant. I didn’t even have preconceived notions about it because I knew next to nothing about it.
That’s why stepping into the shoes of “Autism Support” and “Autism Advocacy” equals Autism Education. People fight against what they don’t know or understand. They want to change and fix and assign blame to what they don’t understand. They feel anger and mourn what they don’t understand. It makes people uncomfortable to not understand something but then there’s that mask of Autism Support that comes in the form of meaningless slogans and heart bumper stickers.
But hey… I have a bumper sticker. I’ve also lit up my profile photos blue. But I’m always ready to answer questions and actively advocate. It’s the least I can do. The rest of the time, well, I’m raising my daughters.
Related articles
- 1 In 88 Is Not Just A Number {Autism Awareness Month} (makingtimeformommy.com)
- Is There an Autism Epidemic? (randi.org)
- Autism Awareness in April and Beyond… (myautismhatrack.wordpress.com)
I too live in your world with my son, Samuel. He is 11 and has Autism. It took years to get help or a diagnosis. Life can be challenging, but well worth it too!
Cheers,
Amma
Agreed… challenging but so well worth it.
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