First off, let me say that there’s a reason I chose to use the term ASD (for Autism Spectrum Disorder) – because referring to autism only as a disorder is, well, messy. It clouds the issue, and it puts the onus of our difficulties on AUTISM, rather than the messed-up world we live in (which loves to kick the ever-loving Scheiße out of anyone who doesn’t comply).
We currently live in a world where the “right” to blow up, attack, troll, defame, threaten, bully, shoot, and incarcerate anyone who doesn’t immediately, spontaneously comply on demand, is furiously defended by people who have no awareness of just how much power and privilege they ield in the world. And people on the fringes — people of color, autistic, mentally ill, brain-injured, trans, and countless others who don’t fit the “norm” — are bearing the brunt of that. Not to mention all their loved ones, who suffer when they/we suffer.
Okay, getting down off my soapbox.
Autism is a bit of a mess, right now. People don’t understand it. Researchers seem to be unclear about where their efforts will be most helpful. Money gets thrown at the same tired old fundamentally flawed initiatives as though yet more money is going to make it all better. A wide variety of harmful strategies are used to “fix” us, and they just do more damage in the process. Countless autistic individuals are overlooked and refused assistance, and untold numbers of us live for years — sometimes an entire lifetime — in a state of confusion and isolation, without any sense that there may be others like us, or that we can (or deserve to) connect with a community of others like ourselves.
Yes, it’s a mess. But we can fix this.
Here’s why people on the margins are going to fix this autism mess:
- We know how to think outside the lines. Figuring out Autism requires the kind of thinking we do on a regular basis, to live our autistic lives to the fullest (or even just survive). As much interest (and money) has been thrown at autism, all these years, it’s still generally considered a “disorder” all across the board. There’s no nuance. There’s no recognition of spikes and valleys. It’s just this disorder that’s caused by itself — rather than conditions that exacerbate our issues and symptoms. This kind of rigid, mindless toe-the-official-line thinking has kept us stuck for decades. And it’s time to change. Audre Lord said, “… the master’s tools will never dismantle the master’s house. They may allow us to temporarily beat him at his own game, but they will never enable us to bring about genuine change.” In the case of autism, I have to say I agree. It applies. Think about it.
- We know what it’s like to be excluded, discounted, ignored… and that sensitizes us to injustices of many kinds, which can contribute to structural barriers in both society and science. We know the importance of inclusion, and while some of us are inclined to exclude as a reaction to our own marginalization (and we can get a bit “orthodox” about stuff), many of us work towards real inclusion in thought, word, and deed. Being routinely excluded can also sensitize us to exclusions of thought — ideas that need to be entertained and then explored, not summarily pushed to the margins, because they “don’t fit” with the prevailing narrative. The prevailing autism narrative is so profoundly flawed, but those who stand to benefit from its perpetuation are never going to consider the alternatives. See #1 above.
- We’re logical. We’re methodical. We’re diligent. We’re honest. The degrees all vary, of course, but that’s how we roll. What better qualities, to figure out what the real issues are, find possible solutions, test them out, and put them into action? Part of the reason autism research has been such a hot mess, I believe, is because it’s been so driven by the emotional trauma of countless “autism parents” who won’t deal with their own emotional baggage (and mess, in its own right), won’t accept the depths of their own narcissistic wounds, cannot see beyond their own pain, their own frustration, their own sense of humiliation at not having a trophy-grade child to show off to others. They’re as victimized by the inescapably aggressive “normalization” that pervades our lives, but rather than pushing back on that, they take it out on us. Because they want to be part of that normalization, themselves. And we’re blocking their entrance to that cultural gangland.
- We desperately need to do this. For ourselves. We’re suffering terribly in a world that neither understands us, nor apparently wants to learn. We know the inner workings of our own experience, our own thoughts, our own strengths and weaknesses. And we know how we work — how we work best, and worst. We can’t expect an indifferent world to step up and have an interest in helping us just-’cause. Neurotypical people in power seem to need some self-interested motivation to do much of anything. Inspiring that in them is next to impossible, if we don’t put them at the center of our initiatives and make it all about them. News flash — fixing the autism mess we live in isn’t only about them. It’s not only about the trials and tribulations of “autism parents”, of teachers, of institutions that can’t figure out what to do with us. It’s about US. Our lives. Our survival. Screw them. Seriously. Screw them.
- Because we can. Seriously, people, we built the internet. We’ve constructed tools we can use to sort this. And the tools we have at our disposal are frequently free — public computers at the local library, free email, free social networks, free books at the local library (which may include interlibrary loan). Not everyone has access to those things, and not everyone knows how to use them. Some of us simply can’t — because of disability. I know I can be pretty much disabled by the end of each day, including the end of each work week, with absolutely NO energy or strength left for anything other than supper, t.v., and then bed. But there are an awful lot of us who can — and do — work in tandem, feeding from each others’ work, each others’ words, connecting as we can, doing what we can, and forming a kind of Autistic Revolution Tag-Team, picking up on post threads, discussions, sharing, forwarding, reblogging, commenting… moving us forward, bit by bit.
So, those are just a few of the many, many reasons I think the autistic outsiders are going to turn the “ASD” world on its head. We’re already doing it. In countless ways. Whether we’re “out, loud and proud” about it, or we’re working silently behind the scenes, or we’re simply living our lives the best we know how, under the circumstances, we’re making inroads. Even if nobody out there realizes us, when we come to our own aid and assistance, we’re changing the world.
We can’t help it.
It’s how we’re built.