Autistic Community, Crabs and the State of My Cardiovascular Health

A friend of mine recently posted a tongue-in-cheek list of the various stages of autistic advocacy. The penultimate stage was “I am avoiding my own community for the sake of my cardiovascular health.”

In my case, it’s funny because it’s true.

I made the decisions to step away from the autistic activist community about a year ago. In that time, I’ve gained some perspective on why I made that choice – and why the number of us avoiding our own community for health reasons keeps increasing.

crabs a year later

1. Teaching 101 classes is exhausting.

My friend’s tongue-in-cheek first stage was utter outrage at regularly recurring events – in this case, at the autistic character cast as a puppet in the stage play All in a Row. A fair number of the responses to said puppet can be summarized as “Nothing this outrageous has happened to us in the history of humanity!”

It has, of course. Dehumanizing portrayals of autistic people in media are ancient hat. They’ve been deconstructed over and over again by members of the community and by allies.

When I started writing on autism, I did so optimistically and enthusiastically. Here was a field in which so much work hadn’t been done, and I was convinced that my doing it would lend itself to genuine progress.

I overestimated how quickly change occurs. But I also overestimated the extent to which my own community would orient itself to its own body of work.

Today, there are dozens of masterposts on nearly every autism-related topic imaginable. A Google search for “autism masterpost” turns up literally dozens, on topics ranging from autistic vocabulary to ABA to how to write fictional autistic characters.

I appreciate people who donate their time and effort to compiling resources. Masterposts are a lot of work. Academic journal articles are a lot of work. In-depth discussions of any topic are work. I know, I’ve written them.

I am not a fan of repeated 101 requests from folks who clearly haven’t Googled – they just perceive me standing there and demand I answer their questions. And it happens a lot.

I have trouble faulting neurotypical people for it anymore when the autistic community has been an equal source of culprits.

2. Trauma is a reason but not an excuse.

Autistic people are, on the whole, a traumatized bunch – and for good reason. We’re born into a world that isn’t designed for our neurology (in fact, it often seems designed to exacerbate our discomfort), and we’re expected to figure out how to survive in it, often while being “treated” with methods that directly impair our survival skills.

So when we first find Autistic community, our trauma often spills over. Which makes sense! For the first time in our lives, we’re surrounded by people who get it! Who have been through similarly traumatizing experiences! Who can affirm that yes, that was traumatizing and you are not weird, bad, weak or wrong for experiencing it as traumatic!

…The problem, which not all autistic people manage to avoid, is that having that trauma affirmed can feel like sufficient reason to avoid the hard work of processing it.

The result are members of the community who do things like:

  • Demand that others mediate their trauma. Seeking help once or twice in a particularly bad situation isn’t a problem; it’s the folks who demand others pay attention to their problems multiple times a day.
  • Maintain that they’re constantly the target of persecution – a stance that gets even more damaging once the person starts accumulating flying monkeys.
  • Develop a sense of entitlement to autistic-run spaces, resources and platforms.

The longer one processes one’s own trauma, the more clearly these patterns emerge, and the easier it becomes to distinguish people who are working on their demons and people who aren’t. It’s easier to see the cost in fucks that the latter impose on the community as a whole – and to go bankrupt.

Trauma explains a lot of these approaches and attitudes. But it does not excuse them.

3. It only took a few people to ruin me for the rest of you.

There’s a version of the trauma/persecution problem that leads to a profound sense of entitlement to autistic-run spaces, resources, and platforms. The rest of the world is against “us” but these things are “us,” so why can’t I just take them? It’s for the good of the community!

I have seen this dynamic play out several times in the handful of years I’ve occupied Autistic spaces.

I’ve seen autistic students blithely poach the work of autistic scholars and pass it off as their own.

I’ve had to file C&Ds as autistic bloggers have reprinted my writing wholesale on their blogs, then dragged me for having the audacity to ask them to stop profiting off my work – or even for asking to be cited as its author.

I’ve seen autistic authors and artists leave the community entirely, pulling all their own work from publication, after being worked to the point of total disability by another autistic person who had an idea but demanded everybody else put in the effort to realize it.

I’ve been publicly dragged by an autistic activist, along with everyone else at Autonomous Press, based on mere hearsay that the activist’s work might not be automatically accepted for publication, and I’ve seen dozens of other community members take that activist’s side without even asking for clarification.

I’ve had autistic writers throw fits in my AutPress email at the news that we do not, in fact, auto-publish your work because you tell us you’re autistic.

There is a small but incredibly loud contingent of the Autistic community that treats the work of other autistic people as theirs for the taking. But when we’re talking about such labor-intensive tasks as writing academic articles, maintaining a blog, or starting an entire publishing company, it only takes a few of these people to burn out and destroy the very resources they’re trying to leverage.

4. Boundaries remain a problem.

Building culture is an exhilarating thing. But without boundaries, culture-building can easily suck you dry. And the same people who insist that your boundaries are hurting them will tell you your inevitable collapse was all your fault for not having boundaries in the first place.

This is the lesson on boundaries a lot of autistic people grew up hearing, especially if we were subjected to ABA or equivalent “therapy.” When you learn very early in life, upon threat of survival, that you are not allowed to have boundaries, acting as if you have none is a very difficult behavior to uproot. For many autistic people, it’s made worse by our own overweening empathy. We want to help, and we have never been taught how to do so without killing ourselves.

Unhealthy behaviors around boundaries are rife in the Autistic community. They’re difficult to uproot. They keep reasserting themselves in different forms throughout our lives without a consistent and dedicated effort to their eradication. And mental health treatment being what it is(n’t), many of us never learn effective tools to combat them.

Boundaries are a huge deal in the Autistic community precisely because we don’t have enough of them. We have a lot of people without them, a lot who drop them because “I found my people so I don’t need boundaries!”, and many who ignore them out of a desire to help, save and protect others from the same trauma they themselves suffered.

As a result, having boundaries can open one up to excoriation in Autistic spaces. I’ve been rebuked for it more than once. How dare I not drop everything and help (with a project, with trauma, with repeating for the 500th time to some parent on Facebook that vaccines do not cause autism) right now (and always, always for free)?! You’re just as bad as the neurotypicals!

There’s a reason the final stage of autistic activism is “lol puppetize me already, maybe I’ll find the energy to fight this shit with a hand up my ass.”

There are extraordinary people in the autistic community. I’ve found lifelong friends, family, colleagues and mentors here. But those relationships only grow when everyone involved in them maintains a commitment to listening, learning, growth, balance, and boundaries.

Without them, this community will continue to burn out its own members, and both its activism and its culture will suffer.

Deconstructing “Active Listening”

A few weeks ago, “Whole Body Listening Larry” made the rounds of the autistic community:

Image: A green poster, featuring a cartoon image of a little boy on the left and a series of cartoon images of body parts on the right.  The poster is titled "Whole Body Listening!"  Its subhead reads "Larry wants to remind you to listen with your whole body."  The cartoon body parts are captioned, respectively, as follows: Eyes: "Look at the person talking to you." Ears: "Both ears ready to hear." Mouth: "Quiet - no talking, humming, or making sounds" Hands: "Quiet in lap, pockets or by your side." Feet: "Quiet on the floor." Body: "Faces the speaker." Brain: "Thinking about what is being said." Heart: "Caring about what the other person is saying."

Image: A green poster, featuring a cartoon image of a little boy on the left and a series of cartoon images of body parts on the right. The poster is titled “Whole Body Listening!” Its subhead reads “Larry wants to remind you to listen with your whole body.” The cartoon body parts are captioned, respectively, as follows:
Eyes: “Look at the person talking to you.”
Ears: “Both ears ready to hear.”
Mouth: “Quiet – no talking, humming, or making sounds”
Hands: “Quiet in lap, pockets or by your side.”
Feet: “Quiet on the floor.”
Body: “Faces the speaker.”
Brain: “Thinking about what is being said.”
Heart: “Caring about what the other person is saying.”

The discussion at the time centered on how Larry’s approach to listening is a neurotypical-centric one, and that, for many neurodivergent people (including autistic people), behaving in the way Larry describes actually prevents them from listening.  Larry, the argument went, forces autistic and other ND kids to make a tough choice: pretend to be listening but actually get nothing from the conversation, or listen but get reprimanded for not behaving in the prescribed way when they do?

As someone who has to make the choice whether to “listen” Larry’s way or to, you know, actually attend to and comprehend what the speaker is saying, I’m sympathetic to the pushback against this model.  But I’m also struck by how little of what we portray as “active listening” – what Larry demands – isn’t “listening” at all.  It’s speaking.

It’s not verbal speaking – Larry does ask us explicitly not to make mouthnoises.  But it’s communication all the same.  The body postures that Larry’s “whole body listening” demands are all concentrated on communicating to the “speaker” (here, the person making the mouthnoises) that their mouthnoises are the most important thing in the room.  Larry’s intended message isn’t about making himself, or you, a better listener – whatever that means.  It’s about reassuring the “speaker” that they have an audience by telling them that they have an audience.  The form of “listening” we prize most highly, Larry’s “whole body,” “active” form of listening, is at its core a form of speaking in service of reifying speaking.  “Listening,” in the sense of “attending to and comprehending the context, content, and format of someone else’s communications,” really has very little to do with it.

Larry’s instructions for listening might not be wholly useless.  In a world that prized and taught attending-and-comprehending communication on a par with issuing communication, there could easily be any number of people who did their best “listening” while adopting the body postures Larry advocates.  But that world would not seek to impose any particular set of gestures on its population, and speakers in that world would not require the reassurance of this particular set of gestures in response to their speech.  Instead, that world would allow for the fact that there are many ways of effectively “listening,” and not all of them desire or require this particular set of nonverbal signs in order to operate.

That’s not the world we currently live in, and that’s why the autistic community finds Larry problematic.  Larry becomes yet another way autistic children (and adults) are told to speak in a way that is unnatural to them or else.  But Larry also reveals how we subordinate listening to speaking not only by preferring speaking over listening, but by demanding that listening itself behave as a form of speaking.