#RedInstead ~ Autism Acceptance / Appreciation Month

Someday, as I type my ideas for blog posts out on my mobile, the Auto-Suggest feature won’t anticipate “Awareness” or “Disorder” when I type “Autism”, it won’t predict that my next word after “acceptance” will be “speech” or “letter”, and when I’ve typed the “M” after “Acceptance”, it won’t assume that my next word will be “Money”.

Someday, as I google “Red Instead”, the search returns won’t be led by links to technology companies or (seriously?) feminine napkin parodies (don’t ask; I didn’t click.  Just Say No, and all that).

Someday, when we google “red instead”, links to blogs and truly-Asperger’s/autism-friendly advocacy organizations will dominate the cyber-search landscape.

It will be then that we’ve truly arrived.

But the present landscape isn’t exactly bleak.  Indeed, we’re making inroads now, laying down the early foundation with grassroots movements, pioneered by individuals tweeting Twitter hashtags.

It’s happening.  Maybe not all over the world yet, but the tsunami is coming, and it will be a positive, welcome one.

I love the idea of Autism Acceptance Month.

And, like a few on the cutting edge, I want to take one more step:  Autism Appreciation Month.

Acceptance is certainly a positive development, a step in the right direction.  We’re making up for lost time, turning that moniker into a hashtag that will eventually be so common that, like the ever-popular #ActuallyAutistic, it shows up at the top of the suggested hashtag list.

That will happen someday, my pretties.  Social media sites and search engines keep tabs on popular searches and click-activity traffic because, like any business, they want to increase revenue.  We can use their desires to our advantage, nudging them to work in our favor.

This is not impossible.  It’s not even out of reach in our lifetimes.  The tireless efforts of a brave few grow exponentially, spreading contagiously (in a good way, lest anyone begin to wonder!) throughout the internet plains.  Consistency is key.  Growth is eminent.

What is this name-dropping of “Red Instead “?  Well, Broken Brilliant, another wonderful blog that I follow, wrote just last year that the red color is:

an alternative to the Blue-colored designation that Autism is getting this month (particularly from Autism Speaks).

In other words, it’s an effort to swim against the tide of “charity” organizations that seek to unilaterally transform us into something more socially acceptable, at least until they’re finished spearheading successful attempts to treat, cure, and prevent autistic people.

Autism Speaks (or rather, $peaks) has hijacked April 2 (and indeed the entire month of April) to spread misinformation about the Asperger’s/autism spectrum, such as “there are more boys than girls” “with” autism, (says TheMarySue.com, in an excellent article), among other points of contention.  (Sure, there are more males being diagnosed than females, but that doesn’t mean that it actually occurs more often in males.  As we all know–or are coming to realize, females are being assessed and classified as Aspergian/autistic in waves.)

Autism $peaks speaks, alright – they speak right over us, the very people they claim to “support”.  The very people whose existence drives theirs.  They have formed an entire organization–and raised billions of dollars–to work against us.  Federal governmental dollars, paid for with taxpayer money.  Private donations from companies who then pass these expenditures onto customers.  Everybody pays, in some way–not the least of whom are (most of) the autistic people ourselves.  They try to drown out our voices, to create fear and apprehension.

Indeed, their whole Autism Awareness Month is to make more people more aware.  But the problem is, they’re coupling that newfound “awareness” with images that give the wrong impression, perpetuating the most “severe” of stereotypes, dragging out the “horror stories” (the blogs and videos, recklessly written and taken by parents and posted all over the internet without restraint or proper judgment).  A$ wants greater “awareness”; they want more people to be frightened.  Fear strikes at the heart of the nervous system, creates emotional (read: not-as-logical) responses, which generates funding.  Very little of that funding actually goes toward helping Aspergian/autistic people lead better lives.

I know that A$ has not-so-subtly removed the word “cure” from its Mission Statement.  Their move made headlines that rippled across the social media newsfeeds.  Complete with kudos from all (or most) corners of the community.  The prevailing sentiment was, “this is good!”  They weren’t exactly heroes, but for some, their previous misdeeds were forgiven.  Yay them.

Heh.

Not that we can actually trust that.  Please don’t be fooled (not that most of you are).

I’ve said it before, and I’ll say it again: I don’t buy it for a second.

It’s a ploy.

The move was a purely strategic one, to ninja-scamper through a self-made escape hatch in order to duck and cover themselves in protective crouch against the coming public relations tsunami nightmare, and nothing more.

They’re not interested in giving up the fight.  They know who their supporters are and what those supporters want, and their priorities and values run fundamentally counter to those of most of us.

The tide is turning increasingly toward neurodiverse, inclusive, open-minded themes like Autism Acceptance and Autism Appreciation, and A$ doesn’t want to get left back or find themselves having to do excessive (and expensive) damage control.  So they figured they’d appear to concede the “cure” terminology.

But it’s not like they’re actually going to give up; after all, that has always been one of their principal aims.

Nope, they’ll quietly (or not so quietly) go straight to prevention.

I want to reiterate that I have full respect for those adults on the Asperger’s/autism spectrum who genuinely want to have the option of being cured available to them.  I haven’t walked in their shoes, so I feel that it would be misplaced at best and tyrannical at worst, for me to claim or attempt to speak for them.  (I realize that this stance is a potentially extremely unpopular one, but I know several sweet and kind people who are living a not-so-wonderful life because of their diagnosis.  I’ll take this opportunity to reiterate that I don’t claim–or even desire–to speak for anyone but myself, to report on what I see around the Asperger’s/autism community and to describe my own experiences.  That’s it.)

Yes, I realize that the development of a cure is a potentially dangerous slippery slope, because if a cure is ever developed, it’s difficult to control exactly how it will be used. There’s no way to prevent medical bioethics from being thrown out the window and deter the cure from being used on minors, people deemed “mentally incompetent”, and other non-consenting people. Once a breakthrough has been made, it’s tough to contain it and preclude it from taking an unpredicted direction.  We rely on medical bioethics to maintain a sense of decency in the medical and scientific arenas, an assumption that is continuously violated.

Thus, my openness to that venture is strictly restricted to making it available as a voluntary option only, and only for consenting adults who can legally give this consent.

What I have a serious problem with is the “cure culture” (the neurotypical people, mostly parents of autistic children, the pathology-based medical professionals, and the “charity” organizations) who seek to make Asperger’s/autism out to be a nightmarish monster when they haven’t even done any open-minded research into the experiences and perspectives of the adults on the Asperger’s/autism spectrum.  It’s tough to be truly informed, knowledgeable, and logical if their only informational sources have consisted of medical professionals (who are convinced that Asperger’s/autism is a hopeless pathology), “charity” organizations (who resort to fearmongering tactics to raise billions of dollars), and other neurotypical parents of autistic children (whose information isn’t likely to be any better, and who, armed with the same information, are probably just as desperate).

Thus, in all actuality, I don’t want more awareness.  Everyone’s already aware–and scared.  Everyone has already seen those videos and read those parent-written blog posts.  Everyone already assumes they know what autism is and how “awful” it can be.  Everyone “knows” what a “nightmare” it must be to “deal with”.  Everybody already recognizes the dastardly blue lights and blue puzzle piece logos.  Everybody already knows the “light it up blue” campaign.  They can’t miss it.  If you go shopping at numerous stores, you end up practically tripping over it.  The masses already have sympathy for the people responsible for caring for those children.  They even understand–and “empathize” with–the underlying motivation to bring harm to those children.  Because the ugly truth is, they might dream of committing the same act if they were “stuck with” those children.

Very few of them take one step further and actually try to imagine what it must be like to be those children.  To hear the negative words spoken–by their own parents, no less–very loudly, right in front of them.  Nobody realizes that those children understand those words and internalize those sentiments.  Nobody seems to think that those children have a voice, or that that voice should be factored into the equation.

I’m going to temporarily suspend, for a moment, my pledge not to speak for anyone but myself.  Because some people don’t have (legal, or perhaps physical) voices yet.  Some people need a true ally.

I’m not going to speak over them, though.  I’m simply going to advocate that medical bioethics be strictly observed.  I’m going to boycott businesses that support and donate to Autism Speaks (A$).  I’m going to refrain from wearing blue throughout the entire month of April.  I’m going to wear Red Instead, especially on April 2.  And I’m going to tell everyone within earshot why.

I’m going to advocate for not Autism Awareness, but Autism Acceptance and even Autism Appreciation.  I’m going to talk about the positive attributes of Asperger’s/autism, the advantages that many Aspergian/autistic people have, and the fact that those positive traits are due to the autism spectrum condition.  I’m going to Bust The Stereotypes, coming out to as many people I can afford to about my own Asperger’s/autism, and educate anyone who will listen (without making a counterproductive arse out of myself, of course).

It’s time to go on the “offensive”.  “Offense” doesn’t have to mean aggression.  Offense doesn’t need to (and shouldn’t) be violent, mean, hostile, or angry.  In fact, it can be a very positive thing.  If “going on the offensive” doesn’t resonate well or feel quite right, that’s OK; perhaps “being assertive” fits better or sounds more comfortable, more agreeable.  That’s fine, too.  I intend–and use–the terms interchangeably; the spirit with which I write them is the same.

To the world in general, please…

  • Be aware, but in the right way.  Be aware of the accurate facts, the correct impression.
  • Be accommodating.
  • Accept, openly.
  • Embrace.
  • Appreciate.

Thank you.

That is all ❤

***

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Related Posts:

Reality Check: Autism Speaks Is Still Chasing a “Cure” ~ October 18, 2016

Why Autism Speaks Is Bad ~ It Actually Hurts Asperger’s / Autistic People ~ September 24, 2016

Asperger’s / Autism, Genetics, & MIT ~ Part 1: Consent? ~ February 15, 2017 (Part 1 of a 4-part miniseries)

Star-Shaped Peg in a Square-Pegged World ~ Part 1: Curing Out of Convenience? ~ May 23, 2016

Star-Shaped Peg in a Square-Pegged World ~ Part 3: Cure, Prevention, and Eugenics ~ June 3, 2016

37 Comments

  1. Excellent post as usual. I am fully onside both with Autism Acceptance Month and with the further push from that starting point towards Autism Appreciation Month. I personally refuse ever to mention the ‘blue jigsaw piece’ organisation by name as doing so gives them more publicity.

    Liked by 1 person

    1. Thank you! You’re awesome, and I agree, especially about the puzzle piece; the only reason I mention them (and I get an icky taste in my mouth when I do!) is for the people out there who search for why A$ is bad or why the people in (and true supporters of) the Asperger’s/autism spectrum community often take such an issue with them. I really did debate with myself over whether or not I should even print their name, but then I remember running my first search; I wouldn’t have known then to look up A$ or puzzle piece, so I wouldn’t have found the info I did 😊❤️. But trust me, I hated every minute of typing it out 💞

      Thank you so much for adding your voice, my friend 💜

      Like

  2. Thank you. This very much resonates with how I feel. You put the finger on why I continue to be wary of this organization despite the much-touted changes. We did #redinstead last year and will again this year. I am glad for the development of movements to counteract the cure culture. And it’s extra great for me and my oldest boy, as red’s our favorite color-“the color of love”, he calls it. 🙂 Unfortunately, blue is my daughter’s favorite, so I know we can’t avoid it all month long. That would steal her joy. But, if anyone makes assumptions she is lighting it up blue, she has been well-informed about the group that would like to see us eliminated and I have no doubt she’ll set them straight. lol.

    Liked by 2 people

    1. Thank you for adding your (beautiful) voice, girl! I can only imagine how life is at your house and I get this warm hot cocoa sensation inside 😊❤️

      Like your daughter, my favorite color has always historically been blue and my second favorite color has been (a head-nod to your son) red 😊. (In recent years, purple has joined in, elbowing blue in the ribs to allow some room lol)

      But that’s so cool what you and your family are doing, what you’re talking about, and how you approach the conversation!

      Hats off to you, an amazing mum! 😘🌺💚🌺

      Liked by 1 person

      1. Aww. Thanks. We strive for the cocoa most days-love that analogy! How cool about your favorite colors! I will tell the kiddos. That will delight their hearts. And, yes, one thing I firmly believe in is educating my children with the truth. I want to equip them for this too-often nasty world. Hoping they can better it. 🙂

        Liked by 1 person

  3. I have a lot of faith in the autistic community. Even though we have a long and bumpy road ahead of us, I believe we’ll be able to get to autism appreciation month one day. People will listen to us (uh, against their will?). We’re working hard, speaking up… and already making a difference. I really think we’ll get there.

    (I say this after I’ve been tweeting & tv-channel, magazine & a city about ableism. 1 out of 3 did shut down its light it up blue-building. I can at least continue doing this for a week or two, I think.)

    Liked by 2 people

    1. Oh yeah, we’ll get there 😘. Persistence persistence 😉🌷🌺

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  4. You really should consider writing for $$! Your writings are so articulate and they resonate with so many people. You’re two scoops of wonderful covered with awesome-sauce, sprinkled with brilliant & a great big amazing on top! 😘💖

    Liked by 2 people

    1. Omg thank you, sister!! 😘😘. Your support is like having a big ol’ treasure chest 😍💞

      I’m definitely thinking about it 😊 Apparently one of my friends (who has just written a great book and when I find out the info, I’ll share it here) has been talking with his publisher and surprisingly enough, he told me that my name came up in a conversation! There might be interest 🎉🎊 We shall see! 🍀🌺🌷

      Liked by 1 person

    1. Oh my gosh, thank you so much for the shout-out! So honored to be among the amazing company featured there. Awesome site, btw!! Bookmarked for easy check-in 😊🌺🌟

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  5. Just wanted to let you know that today, Autism Awareness Day 2019 (April 2) I googled #RedInstead and YOU came up!! Along with several other relevant links :-). We’re getting there <3.

    Liked by 1 person

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