Autism ‘awareness’ is not enough ~ Part 2: more ‘awareness’ is LESS Awareness 

By the time most people have reached adulthood, or even sooner these days, they’ve heard the term “autism”.  Chances are also pretty predictable that when most people hear that term, they form an instant image in their minds.

The Blank Stare.

The lack of talking.

The “missing” engagement.

The imaginary “cage”.

The self-injury.

The helmets.

The seizures.

The endless crying.

The “behavioral issues”.

I’m not saying that doesn’t happen.  I admit that my own perspective of autism carries with it a bias, a slightly slanted lens.  After all, I don’t resemble the picture painted above (other than the greater portion of my life spent staring at nothing in particular, or perhaps in silent fascination of some seemingly “mundane” detail that the non-autistic person might never think twice–or even once–about.

It’s Autism “Awareness” that, at least in part, might have been (probably was/is) responsible for the chronic lack of awareness that I might be on the Asperger’s/autism spectrum myself.

On Twitter some months ago, there was a hashtag campaign called #SheCantBeAutistic, which, in typical rocking cool fashion, the Asperger’s/autism spectrum community picked up and ran with.

“#SheCantBeAutistic – she actually has friends!” went the tongue-in-cheek, mildly-grinning-while-eye-rolling tweets.

“#SheCantBeAutistic – she makes eye contact!”

“#SheCantBeAutistic; she has a partner!  And children!”

This campaign was wildly popular for quite a while, and as I understand it, its aim was to bust holes in the common stereotypes surrounding the Asperger’s/autism spectrum.

The unfortunate part is that this sort of grassroots campaign has to exist, that it had a use, that it served a purpose.  A purpose that it should never have had to serve in the first place.

A purpose created, in large part, by the lack of awareness that “awareness” campaigns involving autism usually generate.

Consider the entities that create these “awareness” campaigns.  They’re an amalgam of negative-minded parents, pathology-fixated medical and mental health professionals, and revenue-hungry organizations with strong ties to major corporations, usually headed up by people who have long track records in sales and executive positions in these major companies–people whose only marketable skill is, well, marketing.  The campaigns themselves are spearheaded by the latter and followed/supported by the rest.

This is why the campaigns themselves are so catchy.  “Light it up blue” is a mind-sticky slogan.  Using single-syllable words and a primary color, it’s easy to remember for the generally attention-deficient world.

Given the marketing gurus behind all of this, sitting at the controls and engineering the marionette strings, it becomes (painfully) obvious that these campaigns were designed that way.  A group of people in suits and ties sat around a mahogany table and made a series of decisions about how to get this campaign to stick.

A distant second on the priority list was what–and whom–the campaign actually stood for.  Real-life autistic people seem to be barely an afterthought.  (Thanks, A$ guys.)

Their campaign is designed to scare.  To devastate.  To overstate.  After all, the only actually-autistic stories their site features smack of yes-man inspiration porn.

Campaigns like that don’t raise awareness.  They perpetuate stereotypes.  They don’t make it more likely that medical and mental health professionals will recognize people like me more easily; they make it less likely.

If these organizations truly existed for Awareness, they would be listening to–and amplifying the voices of–a much wider range of people on the spectrum.  They wouldn’t treat it like the “monster” that they do.  Their website wouldn’t convince the parents and the public that their autistic children are doomed without A$ or the traumatic “treatments” they continue to advocate.

If they were truly in it to help us, they wouldn’t be funding research about genes and cures (don’t be fooled about that last one); instead, they’d be funding initiatives to update the curriculum for medical and mental health professionals.  They’d be advocating self-advocacy.  They’d be soliciting our stories, our opinions, our ideas.  They’d interact with us and connect with us on social media.  They’d be trying to end discrimination in the workplace and pass legislation.  Hell, they could start by giving more to autistic adults.

They would use their employment listing website in a more productive manner, starting with better screening of job postings to ensure that these jobs would be actually accessible for, and well-suited to, autistic people.

(Seriously, I took this screenshot from one of the job postings on their employment listing site.  Can we say “we’re putting this up for show, but you’re never going to make the cut if you have autistic traits”?  I mean, what’s a job listing with these types of requirements doing on a website that’s supposed to be for autistic people??)

Screen Shot 2017-04-04 at 11.41.04 PM

(In the interest of accessibility, the image above consists of a bullet-pointed list of requirements for a job position, with “verbal language skills”, “Exceptional communication and interpersonal relationship skills”, and (must be able to work a “flexible schedule” underlined in yellow for emphasis.)

If A$ really cared, they would be looking into anti-anxiety therapies and depression-prevention strategies and publishing sleep “hygiene” pamphlets instead of ridiculous “tool kits” that deliver nothing tangibly beneficial.

They’d be calling for greater care taken by way of medical bioethics.

But no.  They want to stay in business.  They want to drum up more business.  They partner with businesses, not people.

Could I have asked them for a scholarship for school to reduce my student loan debt and the accompanying stress it causes?

No.

If we fell on harder times and were in danger of being evicted from our apartment, would we be able to go to them for some temporary help?

No.

Are mental health professionals any more equipped to be familiar with my neurotype and be any better able to help me through the autistic lens, or be more aware of some of the specific issues I face as an adult on the Asperger’s/autism spectrum?

No.

Do I have access to affordable health insurance or any other kind of financial break to ease my burden and my uphill climb?

Nope.

Can I even trust the jobs they list on their affiliated website, with any certainty that the companies listing jobs there will actually hire me?

Of course not.

What do we get?  Here’s another screenshot, from the one single blog post on that website’s blog:

Screen Shot 2017-04-05 at 1.44.58 AM

(For accessibility purposes, the image above contains the blog post with the title “How Volunteering Can Help In Getting a Job”, written December 31, 2015, followed by the first paragraph, which reads “Many job seekers with no work experience often get trapped in a catch-22 situation: it’s difficult to get a job without experience but to gain experience, a person needs a job!  Volunteering can be an effective way to get around this procedural hurdle and land the job you want.  Here are five reasons you should volunteer:”

And it goes on to list those five (pathetic and not-always-true) reasons:

  1. It adds professional experience to your resume (True, but at what cost??)

  2. You “choose to learn” as opposed to “you learn” (Bullshit.)

  3. It’s a safe place to step outside your comfort zone (Bullshit.)

  4. It helps you put together references (This one might be legit)

  5. It puts your passion above and beyond your paycheck (Bullshit.)

(Really??  That’s what they advise?  Can we say…encouragement of parasiticism?)

That’s what we’re up against, folks.  If some of us seem a little bitter sometimes, and you’re wondering why, there’s a big part of the answer.

And maybe that’s why they might have actually been telling the truth when they claimed to have broken off their chase after a cure after all, as they claimed last October; if we were “cured”, they wouldn’t have a reason to exist, and this organization has become a huge cash cow for the people involved at the top.  They probably are still chasing a cure; they probably simply decided to keep those efforts on the down-low, or perhaps temporarily shelve them for now.  But they might have also realized that if they were ever successful, there would be no “use” for them (not like there is now, either, as it is).

Never have I seen a group so active and so revenue-healthy, who claims to advocate for and support autistic people and families be so dense and out of touch.  Never have I seen such an “advocacy/charity” organization so despised by the very people they claim to advocate for and support.

There’s a reason for that.

It’s because they’re all talk and no real help or support in any way.  In fact, even (all of) their talk works against us.

It would be better if they didn’t say anything at all.


Related Posts & Links:

In 2017, Autism Awareness Is So Outdated: Demand Autism Acceptance Now ~ Liz Ditz (TypePad blog) ~ April 2, 2017

Why Not To Support Autism Speaks ~ Stranger Darker Better (WordPress blog) ~ March 21, 2017

Autism ‘Awareness’ Is Not Enough ~ April 1, 2017

Autism Awareness: Are We Nearly There Yet? ~ Autism and Expectations (WordPress blog) ~ March 24, 2017

Don’t ‘Light It Up Blue’ For Me ~ April 1, 2017

I Don’t Usually Get Political But… ~ November 3, 2016

 

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19 Comments

  1. How do you know their table is mahogany?? 😮 Are you a secret agent/spy?? 😜😘

    Holding high support examples, like my kiddo, up to show what autism is like is just a scare tactic designed to pull on emotions.👎👎 It stigmatizes high support as *bad* and completely overlooks less support folks. And then….Where’s the freakin support??!!! 😤😤 We could use some!!👋 As could every autistic person to whatever degree.

    (I use autism/autistic to include the entire spectrum. I’m just too lazy to type Asperger/Autism every time😝)

    Liked by 1 person

    1. You’re awesome, as usual 😘😉

      I’m an infiltrator (not really, actually; just in my alternative world 😉)

      Exactly; 👏🏼👏🏼👏🏼 agreed!–support labels seem to me to be like function labels; they stigmatize and divide. Truthfully, each person is an island, and yet no person is an island. It’s our very island-ness that makes us Not-Island. We’re all so different and unique. I often need different levels of support on different days, and if my own needs vary so much, then what does that say about the variation among community at large? How could anyone else ascertain who needs what big broad category of support? The system is broken; desperate times call for desperate measures; when all else fails, ask or tune into the people 😉😘💞

      Liked by 1 person

  2. I realised I’m getting by rather well because of no one ever having heard of autism awareness month in my area. Same with professionals. The best ones I’ve met are people with no prior ‘autism education’, and have just focused on me and actual my needs.

    Liked by 2 people

    1. That rocks! 👏🏼😊. Yep, I can completely understand that. I’ve found that good ones can be found at either end of the knowledge base possibilities (the ones in the middle might be a case of “knowing just enough to be dangerous” 😉), and the key ingredient is an open mind, open heart, and a true desire to help. So happy you found someone like that! 💖💜

      Liked by 1 person

      1. I just lost someone like that ^^; she changed work just after the beginning of April. I’m really happy she worked with me for over half a year though, helping me to sort out things, looking for suitable work and writing reports that I need to send in order to apply for benefits. I’m hoping to be able to work 40-50%, that is around 20 hours a week instead of 100% 40 hours and then have the gov pay the other 40-60% of my salary. So much paperwork and time though.

        Liked by 1 person

        1. Oh my dear, I’m so sorry you lost that person 💐💐. So glad you got to work with her for the time you had, but so saddened that it came to an end 💞🌷💞

          Liked by 1 person

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