Welcome to the 2017 edition of Autism “Awareness” Month (heh). This month, I will probably reveal my Activist Face a bit <grin>. I’ll try to keep The Feisty to a minimum, and logic and bride-building at the control panel, although there may be times when I get a little…impassioned. 🙂
…Especially when talking about Autism “awareness” Month, and Autism “awareness” itself.
All over the globe, various people will parrot these words, probably hundreds of thousands of times over. But I dare say that they probably don’t know what they’re really talking about. The vast majority of them may not realize that they’re missing the point.
April is often a time of depression for those of us on the Asperger’s/autism spectrum, for these very reasons. Because “awareness” is not true Awareness. The way in which this “awareness” is carried out can be detrimental to our wellbeing, for we are constantly bombarded with the message that somehow we’re broken, incomplete people. That somehow, we would be made whole again, if a magic wand could simply erase our autism. We’re incessantly reminded of the efforts under way to ensure that people like us are never born. And the entities championing for the prevention of your (our) existence have louder voices and deeper pockets than you (we) do.
Imagine that for a moment; how would that impact you? How far down would that drag your own wellbeing? Especially when, as is true for a large portion of us, we’re not suffering from autism, but merely the attitudes of those who believe that our differences constitute a disease that must be treated, if not cured?
The very entities hollering the loudest about autism “awareness” are actually the least aware.
Kind of a thorny (annual) situation.
I reckon that thus far, you’ve noticed a distinction between “awareness” and Awareness. That’s because there is indeed a distinction. 🙂
“Awareness” is a lazy concept, because it lets one off the hook for going any further. “Awareness” allows them to feel better about themselves just by walking, donating, wearing ribbons, or reciting slogans (“light it up blue”) for a month. Bonus: one only has to do this for a month and then poof! They’re off the hook, good to go, until next year.
But I suspect that most of them don’t truly know what they’re walking, reciting, posting, donating, or ribbon-wearing for. Is there anyone on this (bizarre) planet who hasn’t heard the term “autism”? At the end of April (Autism “awareness” Month), do they really know any more about autism than they did on April 1st. If they haven’t talked with–or read the words of–and truly listened to–autistics/Aspies themselves, then the answer is: No.
Because “awareness” is not the same as education, understanding, or acceptance. Viralizing a Facebook post about awareness takes mere seconds. Making a donation or buying a T-shirt takes a few minutes. Walking for the cause might take a few hours. But one could just as easily be walking for a breast cancer cure, a Special Olympics fundraiser, ALS, depression, or to send high school students to band camp. I doubt it would make much difference (well, except maybe in the high school band camp instance). Hell, one might even forget what they’re walking for, especially when the heat sets in, or you have to use the restroom, or you get thirsty and start searching for water.
I propose that those few hours spent walking aimlessly with the masses along a predetermined route would likely be better spent actually talking with actually-autistic people or reading their books or blogs, becoming familiar with their firsthand point of view, reaching a new understanding or insight.
During the Autism Awareness Month of April, autistic people speak up, in ways in which we feel comfortable. Most of us don’t need an organization like Autism Speaks (known commonly among a large segment of the autism spectrum community–and rightfully so–as “Autism $peaks”, or simply “A$”). Most of us do quite well on our own, with blogs, Twitter Tweets, Facebook posts, and other types of effort and participation.
If one looks around with both eyes open, it’s not difficult to find us, and to realize that we’re everywhere. From what I have experienced and witnessed so far, Twitter is probably the most easily-accessible source of insight into our own self-advocacy, and probably one of the most efficient avenues through which to access our voices. Hashtags such as “#RedInstead”, “#ActuallyAutistic”, “#BoycottAS”, and others, provide a raw, authentic perspective, without propaganda or window dressing. They come straight from the source (the Asperger’s/autism spectrum community ourselves). We also respond with dissenting comments to news stories and shows, documentaries, movies, and magazine articles written about us without us. And we interact with others on personal blogs as well. All one has to do is look for us. We’re easy to find. We’re not hiding and we don’t bite. 🙂
To do anything less than obtain the perspective of Asperger’s/autistic people is to miss the point of Awareness completely.
What we need isn’t more “awareness”. “Awareness” simply means having heard the Autism term, and having a cursory grasp of the bare minimal fundamentals, perhaps after having done a few-second internet search, only to click on the well-ranked websites for a handful of basic facts. Usually, when researching a topic online, the first websites on the list of search results are those that are also the most informative and well-established. Interestingly enough, this is not the case for autism.
Oh, the most well-established and well-optimized websites show up, all right.
But here’s the kicker: they’re not the most informative. They think they are; they appear to be. But they are actually the least accurate. They’re written from the perspective of people who aren’t autistic and have never truly understood autistic people. These websites exclusively feature the opinions of people who view autism in a tragic light, much akin to a life sentence. In fact, they have their own (dark) agenda, and it doesn’t include making our lives easier or spreading the truth.
These websites would rather treat us like a horrifying “epidemic”. A monster that comes and steals children and whisks them away in the night. An invisible cage into which we’re trapped, locked in, and the key master has tossed the key.
All of their “information” is saturated with scare tactics for the purpose of raising money, very little of which actually goes to support autistic people (Autism Speaks, I’m looking at you; in fact, I’m giving you the massive stink eye.) It’s enough to conjure up images of mothers clutching their infants, hoping and praying that the “autism boogeyman” doesn’t come for them, too.
The truth is (and what these entities won’t tell you or even admit to themselves), the autism spectrum as we know it today is none of those things, and the experiences of autistic people typically tell a completely different side of the story. (And truthfully, ours is the only side of the story; everyone else is an outsider, a third-party observer.)
The trick is to look and listen. It’s important to look at–and listen to–the correct sources. And the real source is none other than autistic people ourselves. Most of us do indeed have a story. And most of us will be happy to share it with you, given the chance.
The crucial prerequisite is to throw away everything you think you know about autism and autistic people. It’s impossible to enter the conversation clutching the misconceptions and myths surrounding the words, and come out of that conversation with any increase in enlightenment. Dilate your mind, erase any pre-written notes. Ask the questions as though you have no answers. Because the odds are great that unless you’ve sought and obtained our perspective already, you probably don’t.
What you will learn should you take this step (or if you have taken it already) will likely amaze you, especially if this is your first foray into the autism spectrum world from the inside. You will find that people on the autism spectrum are all around you. You’ll find that we’re truly incredible people. We’re not here to inspire you, but you’ll probably be inspired.
Get to know us, and you’ll find that we make excellent friends and confidants. We’ll guard your secrets. We’ll provide a safe Judgment-Free Zone. You’ll be able to be yourself around us. There are no mind games, subtle put-downs, or unconscious posturing. For us, generally, life is not some long, chronic contest. You’ll appreciate our differences, the freshness we bring to an otherwise mundane, cookie cutter world.
You’ll likely come to not only be aware of us, but actually try to understand us, accept us, and ultimately, embrace us. You’ll see that it’s not our condition that’s wrong. Our condition helps make us the quirky, unique people we are. It’s a fundamental part of us. What’s wrong is how the world perceives, reacts to, treats us.
And in talking with us, you may learn something about your own world. Some of its ridiculous idiosyncrasies might become more visible. Some of its characteristics may become more obnoxious and unnecessary. Some of the hard-and-fast rules might seem more pointless and arbitrary.
After talking with us, you might find that the world at large is kind of a silly, stressful, overwhelming place. You might become aware of the rat-race and your own desire to get off the Merry-go-round of the hamster wheel.
After talking* with us, you might even learn something about yourself. That maybe, the world is a bit overwhelming for you, too. That words, attitudes, and environmental stimuli can be caustic and grating. That the world in general probably wears you down more than you realized before. That maybe, it’s not just autistic people who face challenges when interacting with the world and living our daily lives. Maybe we’re a canary in a coal mine, a future-telling barometer, in a way. Maybe our nervous systems detect trouble ahead before yours do. Or maybe we’re simply more astute to the looming limits of tolerance and resilience because we have to be.
When you learn more about autistic people, and the world in general, and even yourselves, from autistic people…
…you’ve surpassed mere “awareness”, and you can see how petty and lip-serving the whole “Autism ‘awareness'” hype really is.
It will likely become obvious that “awareness” and Awareness are diametrically opposed and probably mutually exclusive. As one gains Awareness, one leaves “awareness” behind, seeing it for the pointlessness and ridiculousness that it truly is.
And it is at that point that you have gone one step even further: reaching enlightenment.
*(Just a side-note here: “talking” doesn’t have to involve a literal sit-down conversation, although that would be ideal; “talking” with us could mean the simple act of reading our words in books we’ve written, or on online blogs, or listening to a TED Talk given by someone on the spectrum, or browsing social media, such as Twitter, Facebook, or Pinterest. And so on.)