‘Awareness’ is not enough ~ Part 3: Talk is cheap.  Please take action 

There’s a another chapter to this whole “Autism Awareness” thing.  It consists of the next step: action.

My (stern, old-school) father had a knack for spotting a particular personality type he referred to as the “I’m-a Gonna”s–the people who, according to him, lounged around a lot, accomplishing little.  These folks usually got people off their back by talking big about their plans for the future, having learned that the world at large would exercise more tolerance for their (perceived) “laziness” if their upcoming plans included projects that were more conventionally respectable.  According to him, those people were “all talk and no action”.

(I’m not saying that I necessarily agree with this, especially not all the time; there are lots of valid and legitimate reasons why one might appear less active or ambitious, such as invisible disability, intermittent disabling health conditions, depression, confusion, or less-obvious/internal activity that’s undetectable from the outside or by an outsider, etc.)

“Talk is cheap,” he would say.

But autism awareness is an example of a situation in which I might find more common ground with my dad.

A lot of people talk a big game when it comes to autism “awareness”, but as I’ve asked before, how aware are they really, and are they actually doing anything constructive, or are they assuming that a civic duty (if there is one) is satisfied just because they shared a The Mighty article, walked at an A$ (Autism Speaks) event, or wore a blue T-shirt on April 2nd (“Autism Awareness Day”)?

If that’s all one knows, and they truly believe that they’re doing something positive and proactive, then that might be forgivable.  They might not know to look around and glean other information, realizing that those efforts, no matter how well-intentioned, probably don’t do very much to improve the lives of people on the Asperger’s/autism spectrum.

But once one accumulates knowledge and realizes truth, it’s impossible to go back.  At that point, The Red Pill (a The Matrix head-nod) has been proverbially swallowed, and what has been revealed cannot be un-revealed or easily ignored/forgotten.

Whether it’s actually anyone else’s responsibility to do anything at all is up for debate.  We, the people on the spectrum, are outnumbered, which could prove points made by either side.

This might be an unpopular opinion, but I certainly don’t expect everyone to drop what they’re doing and become full-time champions for the interests of the Asperger’s/autism spectrum.  After all, every cause could legitimately argue that necessity, and it simply wouldn’t be realistic to work super-hard for all the possible causes out there.

But it is realistic to expect at least a few more people to do at least a little more than the general public currently does, which as of now, in the eyes of said general public, consists of mostly wearing blue and turning on some light bulbs and watching “Vaxxed”.

It’s also not unreasonable to request that those members of the general public who currently do adopt the Autism Awareness campaign as one of their pet causes to, well, shift their tactics a little (usually, a lot).  I mean, if they’re already putting energy and effort into autism awareness, then why not direct those efforts toward something worthwhile?

And truthfully, with the advent of the internet, its capacity for the rapid dissemination of information, and the newfound voices of many of us on the Asperger’s/autism spectrum who now write blog posts and articles and whatnot, the general public will only become more informed and hopefully enlightened over time.  Thus, it’s not unreasonable to hope for–and expect–a few more supporters.

Also, as more adults realize that we actually fall somewhere on the Asperger’s/autism spectrum after all (I’m not nearly alone; I personally know six people who got diagnosed last year, seven more who started to suspect they might be autistic, and several more already this year), that translates to a whole new network of families and friends who suddenly become interested in Asperger’s/autism because now, it has hit home.  (And I don’t mean “hit home” in a negative light, of course.)

This translates further into potential additional nodes of new supporters and advocates.

So where does that place this whole “awareness” thing?

It takes it to a whole new level.  Now that everybody (the world at large) has already heard the terms Asperger’s/autism and they’re already aware that it exists, and more people are becoming aware that either they’re on the spectrum themselves or someone they know is, the superficial “awareness” will likely deepen and spread further outward, evolving into a true Awareness.

(The above might sound judgmental, but I intend it to carry compassion and understanding; in case anyone’s wondering, that whole scenario applies to me as well.  Nobody should beat ourselves up about previous ignorance; how are we going to know better until we know better?)

In fact, I’d like to help speed that natural evolutionary process along a little, by providing some concrete examples of what Awareness looks like, which consist of strategies and actions that can easily be taken.

What does true Awareness mean?

It means speaking up and speaking out against stereotypes.

It means politely correcting someone when they use words and phrases like “disorder”, “disease”, “defect”, “illness”, “problem”, “impairment”, “disability” (although that one is my own viewpoint; other people on the spectrum do see it their autism as a disability, so it’s always important to assume nothing and respect the individual), “affected by”, “afflicted by” (or the condescending “touched by”), “deal with”, and other words and phrases mentioned here and here.

It also means not doing or saying that which is mentioned and discussed here.

It means withholding judgment when we start to get short as an early sign of a potential oncoming meltdown, or when we come across as more blunt than the “average” person, or we become focused on our interests and niches, or we have to bail out on pre-made plans, or we don’t answer our phone, or when we adhere to stricter food/dietary preferences, or when we dress differently for greater comfort, etc.

It means not automatically assuming that we’re somehow lacking just because we’re on the spectrum.  Autism is not a mental illness or a personality disorder, nor is it a psychological/emotional issue.

It means not making assumptions about us based on our tone of voice, posture, body language, clothing, job position or work status (or absence thereof), or any other aspect.

It means commenting (politely but firmly) on blogs that criticize autistic people and autistic traits or paint them in a negative light.

It means boycotting companies that support A$ or discriminate against autistic people.

It means reaching out (gently, non-confrontationally, and with an open mind) to autistic people, treating us like human beings, giving us latitude, stepping aside and letting us take the microphone.

It means promoting us and our voices, referring and linking online back to us wherever possible.

It means not sharing A$ junk or The Mighty stories (or anything similar).

It means not even visiting those websites and giving them publicity or “hits” or any other kind of attention or statistics or notoriety (aside from calling them out, of course).

It means wearing Red Instead (or pink or gold), when the establishment is calling for the world to wear blue.

It means not lamenting about the “hardships” of “dealing with” us in relation to our spectrum status, either on- or offline.

It means giving us the benefit of the doubt, or at least the opportunity to explain/clarify ourselves.

It means understanding that we’re different, but not inferior.

It might even mean correcting (maybe in the form of a question) the so-called autism “experts” during conversations with them.

It means that if/when you’re seeking the help of a medical/mental health professional for your son/daughter/etc, choosing one who is more positive and progressive, as opposed to negative or fixed on the idea that it’s only a pathology.

It means paying attention to the politicians and pending/developing legislation, and making pro-Asperger’s/autism points, even making phone calls or writing letters as necessary.

It means not desiring to separate the person from their autism (unless that person would prefer it that way), and respecting their spectrum status as a fundamental part of their identity and who they are.

It means educating oneself as much as feasible and realistic, by visiting the websites of Asperger’s/autistic people.

It means not using “high/low functioning” labels (i.e., “s/he has ‘high-functioning’ autism”).

It means liking, loving, and respecting us as we are, adjusting oneself to interact with us as we do for the world at large all the time and nearly every day.  It means perceiving, recognizing, and respecting our whole being as an indivisible package, accepting, and meeting us where we are…

…and it means doing what one can to act on the grand scale to ensure that the world at large does nothing less. 🙂

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12 Comments

    1. Good question! The line is indeed blurred, isn’t it? On the one hand, it’s not an allergy, but on the other hand, it *does* cause physiological distress. Even the act of eating something you don’t like, can cause stress, and the more one dislikes it, the more stressed they get. And if it’s a texture issue, it’s totally hitting the gag reflex, so…ewwww. Yeah, I think these formerly-known-as-preferences needs a new term. “Preferences” implies voluntary; avoiding mashed potatoes due to the gag factor, for me, is *not* voluntary 😊❤️ Awesome point! (I understood you correctly, right? Just got home from a 12-hour day at work 😖) 😉💓🌟

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  1. It also means not using functioning age labels (“functions at level of/mental capacity of/mental/cognitive/developmental/intellectual age of” any age younger than chronological age, or stating a person “functions at half their age” or “1/3 their age). These labels do not respect the many variations of what it means to be a child, teenager, or adult. Just because someone does not do everything that is traditionally stereotyped “for their age”, or likes “younger” or “mature” things, does not make the person “not like their age”. I mean, who came up with the concept of “age appropriate” anyway? I identify as an adult who needs some support. I don’t consider myself any less of an adult, just because I have not done everything my NT peers do.

    Liked by 3 people

    1. Amen! 👏🏼👏🏼👏🏼 You fleshed out the concept beautifully! Thank you for that! You did it *much* more justice than my brief mention 😊❤️

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