The neurotypical population generally tends to perceive those of us on the Asperger’s/autism spectrum as “locked in”. Locked in what? Locked in where? Locked in how?
To hear them talk, you’d think we were stuck in an invisible cage, trying to claw our way out. And some particular “charity” groups are willing to go so far as to literally lock themselves in glass boxes for 50 hours in order to “prove” their point.
It’s called the “Locked In For Autism” campaign, and it sickens me. It’s nothing but a cheap, cheesy, and disturbing gimmick.
Yes, that’s right; in a similar spirit as the “Ice Bucket Challenge” of a few years ago to raise awareness about ALS (Amyotropic Lateral Sclerosis, AKA Lou Gehrig’s Disease), a UK-based autism “charity” whose name I shall not mention (which smacks of a vibe similar to that of a particular US-based puzzle-piece organization, whose name I also shall not mention) has decided it would be–I don’t know–hip? Funny? Amusing? What do they hope to gain from this? Anyway, they thought it would somehow be a good thing to promote this, in an effort to “raise awareness” of autism.
Orly? Hasn’t the neurotypical (NT) world done enough to “raise awareness” about autism? And exactly where have those “efforts” gotten us? How are we, the actually-autistic, any better off as a result of those efforts?
Sure, more people are indeed aware of autism. As in, they’ve heard the word and seen the “horror stories” (their perception, not mine). Yep, they can pat themselves on the back now, because they’re oh-so-enlightened and oh-so-hip-and-“aware” now. Their heads are brightened with light bulbs hovering over them. They “get it”…
…NOT. They might be aware of the term. But they’re also petrified of it now. People refusing to vaccinate their kids, preferring them to contract a case of preventable disease instead of–gasp!–Autism.
Because (to them) autism is a modern-day boogeyman. The Loch Ness Monster. Bigfoot. Or some other persistent enigma that lunatics have been chasing for years, but have never caught up with, some grand mystery of the universe that everyone’s been scrambling in chaos, tripping over themselves in a race to victory, but never been able to solve.
But did anyone ask us, those of us who are actually on the spectrum? Or did they just make (horribly inaccurate) assumptions (again) and then subsequently scramble (there’s that word again) to spread fear and misinformation, culminating with the ultimate goal: a money-grab?
Personally, I don’t consider myself “locked in”. I don’t currently know any fellow Aspergian/autistic people who do, either (and I know quite a few).
We’re all right here (as always). Whether we’re verbal or not, writers or not, etc, we’re all right here. And many of us have plenty to say. Social media is our lifeline, and we’re easy to find, if anybody outside the spectrum bothered to look. One–just one–click on the #ActuallyAutistic tag would deliver vast untold riches of results.
I’m thisclose to reaching the conclusion that it is not we who are locked in–it’s they who are locked in (“they”, of course, referring to the (more ignorant among the) NTs).
How can that be? Look at them; listen to them. Especially about this whole autism “thing” (or any other chronic “disease/disorder” they’re hot for at any given moment (which lasts anywhere from a month to a year).
They are “locked in”, stuck in their own opinions, perceptions, impressions, and assumptions of autism and autistic people.
They are “locked in”, confined to their dogma, refusing to listen to us. Honestly, sometimes I often feel like I’m screaming into the wind. A neurotypical wind that keeps blowing without cessation or relief. It doesn’t let up. This charity and that, this app and that, this product and that. Some apps and products are pretty good; the charities, however, hardly ever are. In fact, they generally do much more harm than good–anything from simple fear-mongering to the promotion of thinly-veiled eugenics initiatives.
They are “locked in”, refusing to move forward, learn something new, progress along a positive path, and become more enlightened.
They are “locked in”, stuck in the past, continuing to believe that Asperger’s/autism is a “disorder” of “epidemic” proportions, that needs to be “treated” until it can be “cured” and “ideally”, “prevented”. (I know, that’s a lot of quote marks; it can be exhausting sometimes, trying to quote neurotypicals.)
They are “locked in” to a futile attempt to try to understand the “pathophysiology” (i.e., root causes) and find those “cures”. They’re “locking in” their time, money, and energy, throwing it into that same noisy, windy vortex I mentioned having trouble getting heard above. I would venture to say that they’re wasting their own lives, attempting a completely unnecessary and unwanted endeavor.
Hell, maybe they feel like they’re screaming into the wind, too. Or maybe they feel like they’re hollering at people in glass cages. Because we turn blind eyes and deaf ears (my household has a literal set of each) on their “charity” and their “advocacy”.
And we damn well have a right not to listen. Because these efforts are about us, after all. They’re being done without us, but they definitely do affect us. And they never bothered to come to us. This “awareness” project is like all the others: worthless. Because just who is benefiting from it?
It’s not the Asperger’s/autistic community. I personally don’t know (and have never heard of) a single soul who actually reaped any benefit or received any assistance whatsoever from any of these charities and “advocacy” groups.
It’s not the donors who benefit, either; they’ve been fooled into helping fund largely-futile efforts.
Oh wait–I know! It’s probably the organizations themselves, who benefit the most. I don’t usually think about things like ZIP/postal codes or vehicle makes/models, but I’d be curious to know these two tidbits about the head honchos of these organizations. Might be an interesting survey study…
For the remainder of this piece, I’m speaking directly to the organizations/entities/groups themselves.
Organizations, do you really want to help people in the Asperger’s/autistic community?
I’ll tell you how. (Call it market research, if you want.)
First, stop the fear-mongering. I’ve said it before and I’ll say it again: autism is not a boogeyman. Autism is not the enemy (ignorance (yours) and despair (ours) are, however). If you want to inspire people to donate, show what happens when we don’t get the supports we need. The alienation. The crass treatment. The loneliness. The tears. The unemployment. The medications. The hopelessness. Then show what happens when we do get the supports we need. The fulfilling lives. The healthier relationships. The reduced anxiety and lifting of stress. The liberation and freedom. There, that sounds much nicer.
Second, move over and let us express ourselves. We’ll do the talking and writing, thanks. Give us some respect. At least acknowledge the presence of the very people you’re claiming to try to help.
That would be a good start, anyway. But wait–here’s more!
Push for legislation to make assessments more affordable and accessible, so that we can begin to get the help/support we do need.
Push for removal of ASD from the DSM; we have ICD-10 codes; that’s plenty.
Push for equality legislation to end (or at least discourage) discrimination.
Create scholarships–real ones, ones that aren’t impossible to get–for Aspie/autistic people who want to attend/continue their post-secondary education. Make it substantial; you’ve got the cash. Don’t cut it off after their first year, either; see the recipients all the way through their degree/certification programs.
Set up discount networks; instead of setting up lame “Light It Up Blue” displays at big-box stores (“oh look how progressive we are!”), why not work out a deal with these stores in which people on the spectrum can sign up for a free/low-cost membership club and be issued a card, which they can then present at your stores for 10-15% off their purchase?
Create true awareness initiatives in which you venture into businesses (start with the big ones first)–take actually-autistic people with you–and have them give presentations to the supervisors about our desirable/beneficial skills and qualities, and presentations to the staff about how to work with us and create a peaceful, cooperative working environment. Advocate a zero-bullying, sensory-friendly policy. Encourage flexible hours and working environments where possible. Discuss needs we frequently have, like sensory sensitivities or straightforward communication. Recruit US to do the speaking.
Feature writings by people who are actually on the spectrum. Blog posts, books, YouTube videos, etc. Keep a list of these on your website. Promote them (us). Promote creative work or other services by actually-autistic people. Promote their (our) businesses, if they’re self-employed.
The way the situation currently stands, you (the organizations and the more ignorant among the neurotypical population) are the ones “locking us in”. You’re the ones “locked in” (to your current mindset, and are stubbornly hanging onto it), and by remaining so, you’re attempting to suck us in with you.
You can change that. You can begin to work for us, for our benefit, in our best interest. You can cease to be an oppositional force that drains our energy, wastes our time, and divides the world. (Because face it, we’re also a force you currently have to fight against.) And instead, you can become one of our greatest allies, truly helping us out and actually making a difference (and you’ll probably get much more of our support and donations in the process).
Be the key that unlocks the (rest of the) world, delivering it from its ignorance and helping to give our voices a signal boost.
The choice is yours. We’re open, we’re ready, and we’re waiting.