autism awarenessacceptanceaction day

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Awareness

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Yesterday, a pretty neat thing happened. I got word that I’d been named by Sharecare as one of their top ten *Social Health Makers*, described on the site as ‘the most influential people in health and wellness on the Web, literally driving “conversations on the leading edge.”‘ Following the announcement, I received rapid-fire requests for interviews. Upon which I wrote to a friend, “Seems this is bigger than I thought. Yay. Sh-t. Sh-t. Yay.”

I don’t like the spotlight. I find it awkward and uncomfortable. But I’ve got something to say, and, well, thanks to my daughter, I’ve got a pretty deeply engrained sense of responsibility to get out there and say it. According to a quick Google search, the newspaper that called first reaches over 400,000 paid subscribers a day. And, well, that’s a lot of people to hear the message. So I agreed to talk to the reporter.

We spoke briefly. As it turned out, she really just needed some background. More than anything, she wanted to know why I blog. I talked about the usual topics. I told her that I’m hell-bent on demystifying autism. I told her how important it is to me to take the conversations into the light so that no one lives in the dark. I told her that I try to lift the curtain of myth and ignorance and in so doing expose the beauty of the multi-dimensional human experience behind the label – in other words, the people, not the words.

We talked about the disparate and sometimes conflicting perspectives and priorities within the autism community and my often fumbling but nonetheless sincere attempts to bridge the gap between them – to show that, as with all people, there is far more that we share than which divides us.

There was more, but you already know the rest.

She asked what I get out of blogging. My time was limited but my words were not. I tripped over them and they began to overlap. Connection, community, perspective, mentorship, guidance, friendship. For me AND for my girl.

And then I repeated what I so often say about blogging – that its greatest benefit for me has been the introduction to so many amazing people on the spectrum. I explained that it is they who have offered invaluable insight into my daughter’s experience and have thus guided me in parenting her from the inside out, as it should be. I talked about how much they have taught me – about dignity, humanity, empathy, respect, advocacy, friendship. I talked about how much they have helped to shape the evolution of my perspective on autism – and so much more.

There was more, but if you’ve been here for a while then you know the rest. You know that when she asked me about specific topics and posts, I led her to Welcome to the Club, D Day, and Person First. You know that when she asked me if I would recommend that parents new to this journey read blogs, I had to refrain from saying, “%&#$, yes” and just say, “Why yes, I would.” You already know that I told her to recommend to them that they do it in small bites, as they can. And you already know that I used the opportunity to once again recommend that they read blogs written by individuals on the spectrum.

But what you don’t know is what happened next. Or maybe you do, but I didn’t see it coming.

“Wait,” she said, clearly thrown off. “There are people with autism who blog … themselves?

The question hung in the air for a moment before I could respond with a socially appropriate answer. “Of course,” I said. “There are many, many autistic individuals who blog – from mildly impacted folks who might present as no more than quirky to those who are nonspeaking and rely on alternative methods of communication, yet are incredibly eloquent in writing.”

“Wow,” she said. “Is there a particular one you would recommend starting with?”

I told her there were far more than one and I would send her links as soon as we hung up so that she could contact them directly. Cognizant of the fact that she was on deadline, I managed to narrow it down to five.

Editor’s note: They are all in the sidebar to the right, or below if you’re reading on a mobile device.

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Acceptance

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Those of us who live and breathe within the world of autism find it hard to believe that there is anyone out there who is as yet unaware. Given our fatigue with the topic, we deride Autism Awareness efforts. “For the love of God,” we shout, “aren’t we passed this yet? How can there be a single human being left on planet earth who is unaware of autism?”

And so we say the time for awareness has long since passed. It is time now for Autism Acceptance and Autism Action. And it is time for those things — it is absolutely, positively time.

But that doesn’t mean that our awareness efforts are – or can be – a mission accomplished.

There’s a really cool phenomenon that Luau and I have noticed in Brooke’s development. While she moves forward along her unique trajectory of skill acquisition, she will often go back and, as we very unscientifically call it, back-fill. While still moving forward (or sometimes pausing to gather steam) she will revert back to whatever developmental steps she may have skipped or too-briefly touched along the way and fill them in.

At nine, she began in earnest to act out scenes with her dolls and stuffed animals, even though she had largely moved to more nuanced play. As a fourth-grader, she is now going back to learn how to add and subtract – while concurrently working on multiplication.

Without heading back to solidify the foundation upon which her newly acquired skills are laid, her mastery of them would be in constant jeopardy – built as it would be on nothing but a house of cards. Though she might be able to answer a multiplication question correctly, the answer would be rote, rather than based on any real understanding of numerical operation. Right answers are good, but rote right answers are hollow. Without comprehensive depth behind them, there can be no fluidity, no fluency, no transferability of concepts.

And so it is with awareness. Knowing statistics or diagnostic criteria or even having once met your aunt’s second cousin’s kid might make you seem relatively conversant, even compassionate and accepting and AWARE, at a cocktail party. But if that’s awareness, then we’re teaching the world multiplication without the understanding of addition.

Recognizing puzzle pieces is not awareness. Spouting statistics is not awareness.

Understanding that the autism spectrum is so broad and so varied as to very nearly encompass the entirety of the human experience – and yes, even powerful, eloquent bloggers who can speak for themselves – is awareness.

Reading those blogs, listening to those voices, understanding those perspectives – that’s the foundation upon which acceptance and action take place.

Today is World Autism Awareness Day. It is also, thanks to Paula Durbin-Westby and our friends at ASAN (Autistic Self-Advocacy Network), International Autism Acceptance Day. To others, it is Autism Action day. To Brooke, it is Tuesday.

And to me, it is every one of those things.

It is a time to foster ACCEPTANCE — not tolerance, ACCEPTANCE.

It is a time to demand ACTION — access to education, employment opportunities, safe and appropriate community-based housing, family services, coaching and support, ABLES accounts, and above all, an end to the blatant hierarchy and institutionalized ableism of our healthcare system.

But so too, it is a day to go back as we move forward. To revisit the developmental stage that we touched upon, but didn’t dig deeply enough into to complete — AWARENESS. Because, let’s be honest with ourselves and each other, when a reporter is still shocked that people on the spectrum can blog, we have some back-filling to do.

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It’s tiring.

We’re over it.

We want to move on.

But we have to get this right.

Because without the solid foundation of true understanding, we’re building it all on a house of cards.

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Action

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Ed other note: I do not, in any way, shape, nor form, fault the reporter for her surprise. How should she know better? Without having interacted with our community before, how *could* she know better? Hence, our work continues.

Ed other, other note: Check out the UN announcement HERE. You might just be surprised by the language therein.

19 thoughts on “autism awarenessacceptanceaction day

  1. Bravo!!!

    This brought me back to my Great Nephew when I first visited in CA . I walked in an he took a look at me and said I will hug you but not kiss you. I said that would be fine… I had never been around anyone on the spectrum but I do have a cousin with Downs who is delicious. It was a wondrous vacation … can’t wait to go back.

  2. First, let me say that I’m so proud of you for having been named by Sharecare as one of their top ten *Social Health Makers*, described on the site as ‘the most influential people in health and wellness on the Web, literally driving “conversations on the leading edge.”‘ Yes, I had to quote it all.

    I’m also thrilled that Autism Awareness Day or Month or Year is turning into Autism Acceptance Day or Month or Year or, hopefully Forever. It needs to be Forever.

    Love you,
    Mom

  3. Very well said. (As usual.). And congrats on the sharecare thing. 🙂 I do hope that we can start moving forward as a society on these things – to start putting I place the kinds of accommodations for folks that will really make a difference – that will really foster acceptance instead of just tolerance. I’m glad you were able to educate that reporter, even just a little, because that will be passed on to so many more folks outside our little autism bubble. Thanks for being our voice once again. And happy Tuesday! 😉

  4. I have a 14-year old grandson who is mono-verbal. I am a 78-year old electrical engineer, retired after a good career in business, and I wonder where on the spectrum do I fit, because I am sure I am there somewhere. It is broad enough to span both me and my grandson.

  5. even though you’re not a spotlight person, i still think the sharecare recognition is awesome, and totally deserved. i know i place you in my top one.

    the reporter’s question, “you mean there are people with autism who blog?” very funny, and kind of shocking at the same time. and yet, really, not shocking at all. just another indication of how much work there is to do.

  6. This is my new favorite DOAM post, and I know I’ll be sharing it again and again. It’s a wonderful example of why those Sharecare people are spot on. You’re starting conversation, pushing conversation, making a difference person by person, group by group.

    Karin

  7. Wonderful post, as always. Your concept of back-fill is fantastic! I have seen this in my own children, but didn’t quite understand what it was. Your explanation really nails it.

    Congratulations on Sharecare and all that goes with it. You are a great ambassador. 🙂

  8. Congratulations on your honor!!

    I really wish that the awareness was behind us and we could move on to embracing all the beauty and diversity that is the autism community, however, when I still need to explain autism to my son’s new social worker, we have work to do. It amazes me how long the idea of Rainman as a definition of autism has been maintained. I don’t mean to be judgmental, but as the mother of a barely verbal autistic young man, I feel he is often forgotten in the mainstream media. So many people come up to me and don’t understand the broad SPECTRUM that is autism. So, I am with you.. I pray for and strive for awareness, acceptance and action!!!.

  9. I get that all the time – people not knowing that an autistic person can communicate. I’ve actually had people say, “Well, if he can talk, then he’s not autistic.” Lots of work to do, indeed! xo

  10. Pingback: Wordless Wednesday (Autism Awareness Day 2013 Edition) | Perspicacity

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