The Massachusetts Institute of Technology (MIT) has received $20 million to establish a brand-spankin’-new autism research wing. This is deeply disturbing to me. MIT is a huge scientific/technological think-tank, known for solving mysteries of the universe and Getting Stuff Done. I don’t want the genetic manipulation of People Like Us to be on their to-do list.
So, true to (my personal) form, the oppositional retorts started to sprout and gather speed in my head, reaching dizzying intensity, and of course, those ideas shot out like sparks in several different directions.
Over the course of the next several days, I frantically typed notes into my mobile, notes of thoughts as they popped into my head. Because these concepts appeared separately over time, my thoughts ended up covering a variety of offshoots, themes, and analogies.
So, I turned my cognitive chaos into a mini-series of posts (the first two of which can be found here and here), each emphasizing a different idea. Here is the third (and probably final?) subtopic/theme: the Asperger’s/autism spectrum community, and the oppositional community that seeks to eliminate us from the world’s equation, are each a many-headed hydra of sorts. And here’s what we can do about it…
According to legend, the Lernaean Hydra is a sea serpent with multiple heads (the actual number varies by source). Hercules was the most famous hero to attempt to kill the beast, donning a sword to cut off the heads. But, much to his dismay, for every Hydra head severed, two others grew back in their place. The creature remained, stronger and more resourceful.
Universally, the Hydra is perceived as a Bad Thing, having been influenced by the beast in the Book of Revelation of the Bible and all that (more on that in Wiki’s (decent) Lernaean Hydra article).
But let’s take a closer look: in mythology, the Hydra symbolized the gateway to the underworld, a vast abyss of the unseen and the unknown. The conventional assumption has been, throughout time, that anything unknown is bad, and that it needs to be eliminated.
This sentiment is largely generated and driven by fear. The natural tendency of humankind is to fear that which is unknown. Rather than learn about an enigma and demystify it, human nature tendencies influence us to cast it out, separate it from ourselves, eradicate it from our space, and put a big red “X” on it..and then shut the door and bar it securely.
The entire unknown entity then becomes forbidden, obscured, despised. Because of this obscurity, tales are woven to explain it and demonize it. It won’t go away, so the best thing to do is to banish it. And keep fighting. (Sadly, this theme repeats throughout history; an ancient historical example is Lilith; a more recent historical example might be Hitler’s view of the Jewish people or the US government’s treatment of Japanese people during World War II; a present-day example is the US’s attitude toward people of Muslim faith.)
We, the people on the Asperger’s/autism spectrum, could be considered to present such a Hydra to those who would prefer to erase autism from the world.
The similarities are eerie; for every attempt made to catalog and classify, for every therapy they devise, for every cataloging system they set up, for every research study they do…We’re Still Here.
And what’s even more ironic is that not only do our genetic lineages persist, they concentrate and distillate with each successive generation. And the diagnoses continue to accumulate.
For every “walk for autism”, for every dollar pledged and spent, for every resolve made, for every research paper funded, written, and published, there’s a whole new group of adults and children who are discovered to be on the spectrum after all, who add their voices to the growing chorus of neurodiversity embrace. Our opposition can sharpen their swords all they want. They can try to sever the heads (although I would certainly prefer that they didn’t!). But almost like laughing in their faces, we just come roaring back, stronger and in greater numbers.
Our opposition can despise us all they want. They can beat their drums (and their chests) and holler about what an “epidemic” we are and how much of a “problem” our neurotype has become (and is still becoming). They shriek at the “monster” that “steals” us and “locks” us up into “cages” where we’re supposedly “unreachable”.
Rather than ask ask us who we are, what we have to say about our own experiences, what we need, what types of accommodations we could use, or how the Powers That Be could actually make the world a better place for us (and everyone else), they alternate between slinking away/shriveling up and lashing out in their own egotistical aggression. We endure this sentiment daily, nondescript and unspoken but hanging sometimes-thickly in the air just the same. But in return, most of us just cackle at them, add our voices to the conversation with or without invitation, and live our lives, contributing great things and valuable thoughts to a world that hates us.
And we’ve done this for a long time. We persevere. We beat the game, a little every day. We’re winning…
…at least, for now.
There’s another kind of Hydra. One that opposes ours, one that opposes us. One that works against us. One that tirelessly toils behind the scenes, quietly cataloging our 23andMe results, carrying out well-funded research studies, writing legislation that insidiously chisels away our freedom, our civil rights, and our humanity.
Indeed, this second Hydra is “our opposition” that I mentioned before.
This Hydra, too, refuses to die. It, too, persists, with no sign of retreat. They won’t back down, either. For every obnoxious, hurtful, and harmful campaign we successfully suppress, a few more pop up in their place. For example, the infamous “I Am Autism” campaign was successfully defeated…only to be replaced by the “Locked In” campaign, that dreadful Time Magazine article by Joel Stein (link to my open letter in response), and the movies “Vaxxed” and “The Accountant”.
At this point, the way I see it, we’ve basically reached a stalemate, having locked horns in a Cold War, speaking out through our respective channels, reaching and rallying our respective audiences, although so far, the score is indeed weighted slightly more toward our camp. Our voices are being heard, even if just a little (for now), through websites like Learn From Autistics and Auptima Press, books like Neurotribes, and speakers like Temple Grandin, all of whom seek to build a bridge between the Asperger’s/autistic community and the world at large. Other excellent organizations like The Art of Autism aim to give A$ a run for their money.
…and that’s the biggest threat right there: money. The balance sheets are stacked much more heavily in their favor.
Collectively speaking, Autism Speaks/$peaks, national governments, and university research arms have much more of it than we do. They have the discretionary dollars to keep teams of lobbyists on staff to monitor and sponsor national legislation. They have the funds to secure national PSA spots on the sides of city buses and on television and insert themselves into any and every conversation about autism that their cold hearts desire. When searching for “autism diagnostic criteria”, for example, A$’s website outranks that of the freaking US’s CDC!
This is definitely a problem. In fact, it’s the REAL problem. Not our existence, but they’re refusal to accept it.
However… Just because we’re outnumbered and out-funded, that doesn’t mean that it’s a hopeless situation. Not by a long shot. There are indeed action steps we can take.
What We Can Do:
1 – Talk (if you can, and if you want to). Talk to everyone you can, one person at a time. Family, friends, friends’ families, neighbors, people at the grocery store or in the waiting room at the doctor’s office. Talk to your doctors, counselors, etc. Give them your perspective, share your experience, explain the world from your point of view. Bust the stereotypes. Explain. Express yourself. Build a bridge. Or give presentations (even if brief) at conferences, schools (K-12 and university), parent groups, Meetup groups, workplaces, National Night Out neighborhood block parties, coworkers (if possible)–wherever you can, and wherever you want to. You can even go global and record a podcast, a video, or a webinar.
2 – Write. I don’t care if it’s a blog, a comment or status update on social media, or a comment on someone else’s blog. It can be Facebook, Twitter, WordPress, Blogspot, Tumblr, Pinterest, etc. It can be a book of your own, self-published or otherwise, ebook or hard copy. It doesn’t matter. It can be an article for an online new site, a letter to the editor of a major news outlet, a reach-out to Dr Phil, or anything else. The more avenues we co-opt for our own use, the better.
3 – Hijack terms, hashtags, logos of oppositional entities, and so on. Seize the words, take them back, water them down. Thrust yourself into the conversation; they do it all the time, and turnabout is fair play. Much like the LGBT+ community took back the word “queer”, let’s take back the slurs and wear our own colors. Parodies and spoofs of logos, info graphics, PSAs, and other campaigns can be powerful.
4 – Come out, come out, wherever you can!
5 – Bust the stereotypes as much as you can.
6 – Embrace the stereotypes that apply to you and spin them into positive traits. Poke lighthearted fun at yourself, if you’re so inclined.
7 – If you’re doing a thesis or dissertation on this subject, never assume that the rest of the world (or at least the rest of the community) wouldn’t be interested in reading it!
8 – Go into business for yourself (if you can). Bonus: a product or service that benefits Asperger’s/autistic people. After all, you know your “market” the best – you are one! Nobody knows what you (and probably others of us) need more than you do. If you have an idea, get it out there 🙂
10 – Create infographics and write quotes and memes of your own! This is another avenue to break through stereotypes and set the record straight. It’s another opportunity to lighten things up, joke around, and turn the tables. Aspie Comic and Alis Rowe over at The Curly Hair Project have done exactly this.
We can do this, y’all. Some of us have the time. Some of us have the energy. We’ve all got the right kind of brains. We’ve got the ability to hyperfocus. We’ve got the interest and the drive to see this through. We’ve got the passion. We’ve got the nerve.
And we’ve got the need.
Mythologically (link to GreekMythology.com), Hercules indeed successfully slayed the Lernaean Hydra with a golden sword given to him by the Greek goddess Athena. But, fate had the last laugh, as it usually does; in a twist of irony, Hercules (out of ego? Gloating? Some other motive?) dipped that golden sword into the venom of the now-killed hydra… and ultimately perished as well. Karma!
What does that symbolize about our current struggle? Maybe nothing. Maybe something. Maybe it illustrates that there’s nothing to be won by trying to eradicate something, at least by violence or force (hint, A$!). And in order to eliminate us, that’s probably (eventually) what the camp that includes Autism $/Speaks, the scientific community, the uninformed/brainwashed/freaked-out “Autism Parents” crusaders, and their ilk (essentially, anyone who deems the autism spectrum a pathology to be “cured” and “prevented”) would ultimately have to resort to.
Because we’re not removing ourselves from the equation. We’re not bowing out of the conversation. There’s an exponentially-growing number of people who are realizing that they, too, are part of the autism spectrum, and we’re all just getting started. We haven’t even begun to sing yet.
Ultimately, I think we’ll persevere. Society has never been more malleable and open to change as it is now. It sure took a while; racial, ethnic, and the first gay/lesbian movements had to persist for an incredibly long period of time, without tiring, giving up, or giving in. The world was much slower to change back then. These days, transgender/non-binarism/gender fluidity movements have gained momentum, without nearly as much resistance (by comparison). Maybe the world is now ripe for the neurodiversity movement.
And that movement has sprouted and taken hold. The groundwork is there, and the way I see it, it’s pretty solid. The world is moving at an exponentially faster and more progressive rate than it ever has. This might be just the ticket to our eventual victory.