This collection of personal experiences attending conferences, authored by Xavier Penn, explores what’s still going wrong in autism research.
Content note: Discussion of involuntary psychiatric holds and self-injury
Introduction: Oral Sessions
I phrase my questions achingly, cautiously, edit after edit, before it’s time to (shakingly) press play. The second evening someone says enthusiastically, “You know, I think that was the first time we’ve had someone ask a question here with alternative communication—how cool!” I get the sense that I have just been awarded a participation ribbon in a potato sack race: They did not seem to care for my actual content, and none of it seems to be getting anyone much of anywhere. But I deliberately decide I’ll treat the paternalistic praise as a positive reinforcer, and so I ask more questions the next day.
Five painstaking compositions in total, careful translations of rage into the kind of words that mimic their mouths… I ready them to play aloud; ready myself to try to silence my body. It takes nearly half a session, each time, to prepare to hold my speaker up to the mic. Three or four of the fancy, real people present have already spit their rambles, perhaps even costlessly, into the convention center audio system by the time I’ve finished proofing for respectable synonyms and acceptable “tone” on my screen. They all seem to ask however many questions as they are unanxious for. I have the anxiety, sure, but it’s on top of an imposed inferiority. However, I am there to do the work. To have the conversations. So: five questions, by the end.
It’s not until the final day I more fully realize that what I’m restraining myself from asking in every session is: “How did you determine that the dependent variable you set out to measure is an outcome valued by autistic people?” Because (minus maybe one): Of course they didn’t.
And when I say I’m exercising restraint, I mean that even if I’d asked, it would have had to be that translated version: My rage conforming to their version of nice, cloaked in their advanced vocabulary, and converted into the kind of soundbite their endless oralism expects to eat.
Oral sessions, you see. And a participation award. Because I am not one of the fancy, real people. Not in the psychological sense.
Background: The Damn Lit Review
I could diagnose even the ideas being investigated: such severe deficits in relevance—let alone usefulness—to their research subjects. See, I suspect we’re not actually their population of interest, what with the funding coming from grievance families and the best practices coming from professionals so skilled at milking those mortgages dry. No, we are closer to objects… carelessly subjected to spilling from the real people’s ADOS kits like the toys they think test our proximity to personhood. They build us from raw materials, you see. We are empty bubbles they poke at with ill-disguised glee, designing research questions that will only build upon their hypotheses. Their grants. Their chance of tenure. How did we get here?
Well, that’s the state of the science: essentially every time, they just do a lit review to generate this same shit. Or maybe I should call it a “shit review”—because they’re not including what is considered “gray literature.” You know: the blogs and other outskirts where we set up little camps of knowledge every time bigotry prices us out (citation: the Twitter exodus).
No, they simply survey the last, what, 100 years of science, and congratulate each other: “We have so skillfully systematically reviewed what non-autistics think about autism.” They ask themselves: “How do we build on these ideas?” And exactly that becomes the basis for their further investigations. It’s a circle jerk. What, I should write something more widely quotable? Fine. Autism research is a revolving door which Autistic people virtually never get to enter and allistics (non-autistics) virtually never bother to exit.
The shrine of replication (or at least replicability) that science worships is probably all good and well when the body of sources being pulled from isn’t, in fact, systematically exclusionary. But remember? We autistics don’t count as real people; we are simply raw materials (from which they can build their careers). Our community wisdom doesn’t count as evidence. The outskirts of social media, where we curate this knowledge, doesn’t count as citable. Even our words don’t count as language. Instead, allistic academia keeps getting off to its own theories.
Research Questions: Whose Priorities?
And so the same, profoundly allistic shit keeps getting funded: the irrelevant research papers, the self-celebratory convention luncheons that drip riches like oil, the useless oral sessions, the poster halls from hell. It’s allistics always setting the research priorities. Which somehow never end up being—oh, I don’t know—say, “How can we convince ableists in positions of power to stop destroying/ending/preventing autistic lives? Condition A? Condition B? Or, hey, wait… Should we just… remove the ableists from their positions of power?”
No, there is no such self-awareness. Rather, the amount of money that these cesspools (er… conferences) have directed towards—what, acoustic measures of prosody in infant babbling?—over studies that might lead to the supports actual alive autistic people need—is simply criminal. But they think it will lead to interventions, or even that not-so-secret hallow of prevention.
So they babble away, funding ever-assured, hoping to make our prosody acoustically indistinguishable from theirs (our typically developing peers). Speaking in circles, even intentionally obscure, perhaps they hope I won’t catch on. Or maybe they’ve just guessed I’d never be able to stomach an attempt to wrestle duct tape onto their mouths (though they’d so easily confiscate my voice for any similar redundancy). Instead their priorities keep echoing through the convention center, and they keep trying to extinguish all echoes of our own.
Methodology: Such Systematic Exclusion
It’s natural, you know: we live and breathe exclusion. You know, roughly the same way fish die choking on air, anytime someone up the food chain might benefit.
Arguably, yes, there’s a handful of autistics at the conferences I attend. Most are present primarily because they’re seen as researchers. A few are present only because of their absurdly-requiredly, and honestly heroic, efforts to actually be seen as the dual role researchers they are. And then there’s… me. A token layperson, an un-professional approvable enough to share their space. But I choke on their air. I am present primarily because I’m seen as somewhat neuronormatively nice, commonly capable of complex language (despite it being in my habitual, so low-functioning modality), and inspirationally already half-involved in these poster halls of hell.
Understand, now… If my works (even perfect duplications) were only on some blog—rather than co-authored and/or championed by the kind of academics severely allistic enough as to be assigned near-automatic authority on autism, I wouldn’t be in these rooms to be misinterpreted—if my actual content were even engaged with at all. No dual role researchers would be in these rooms. The primarily-here-as-researchers, most of whom haven’t had a chance to even whisper the neurodivergence my autdar so quickly finds kinship in—there are so often, so many, additional oppressions the kyriarchs wield against them—would not be in these rooms.
Certainly the allistics here (so high-functioning, according to their systematic reviews) would never even know my name. They would never even watch me choose words from over my shoulder, impatient with my potato sack rate of composition. They would never have to witness my fingers running over the smooth wooden panels in the corner of the room, entranced in a way that makes the crowd vaguely uncomfortable. Nor my toes, pacing and shifting, such a stumblish dance they happily base their snap judgments on. Nor my head, so clearly dazed, desperate for the impact of the fists which they’d probably jump to restrain more efficiently than I can say “challenging behaviors.” They would prevent the need to notice me whatsoever—not my body—certainly not the imposition of their inferiority. No, without allies, I would never have made it into this room.
Because, again: the goddamn lit review. The revolving door it represents. The “what would that even mean?” muttered during the presentation on participatory research by the fancy, real person who later walks out. Later, I can joke: that person probably wouldn’t know the words positionality, reflexivity, or intersectionality either, even once bitten on the ass. And now I can suppose that a slap in the face might have at least kept them quiet long enough—if not in the room long enough—to learn.
But of course they left before Lovaas came up. That said, I am here; this is my chance to do the work. I’m in these rooms specifically to have these conversations. At the mic to try approximating their idea of language as closely as I can. My five careful questions; the infinite oral sessions. While what they should be researching—how do we remove ableists from positions of power?—is the elephant in the room. Lurking large, shuffling slow feet; I think only we handful of autistics can see. And the lack of that outcome is trampling me.
Results: Crumbs, at Best
For once, their report defines terms. Autism: a pattern of behaviors.
I am disappointed, though not surprised, that it’s ever the outside-in view. Those children who have autism; they who are at risk; their behaviors. Surely they are hardly in the room, right? (Yes, this writing is some sort of vengeance.)
So: slide after slide of all the wrong outcomes. That follow-up I’ve restrained myself from asking: “How did you determine that this is valuable to Autistic people?” seems like it’s never occurred to the state of the science. Poster after poster of charts and graphs measuring the success of trained compliance… At best, measuring the success of calling their children (but not our own people) our peers.
And maybe most of all, measuring the success of what they mean by language intervention: “how well can we train autistic children to Speak like us?” Given, at this point I can’t even tell whether they use “autistic” as a superficial nod to identity-first language (autistic) versus person-first language (person with autism) preferences, or whether it’s sheer stagnation—still stuck in the days before we were people whatsoever. Either way, they show little-to-zero understanding of what our chosen words might even represent, let alone more-directly-material issues impacting our day to day lives.
And what they mean by success? It’s not communication. It’s not language, despite their constant conflation. It’s certainly not quality of life. What they mean is: Speech just like theirs.
So am I the results? Because I can perform it, now: Their version of nice, their sort of advanced vocabulary, sometimes even that spoken soundbite oralism expects to eat. I can entertain the status quo (or maybe it’s that they find me entertaining) just enough to jam a shoulder into that ridiculous revolving door. Of course, I hope to entertain only enough to get the chance to challenge.
And so I try: reclaiming behaviors. I let my language live embodied much more often than I Speak like them. I make sure anyone meeting me knows that I don’t fucking care whether anyone Speaks. Honestly, I don’t care whether people even use representational language. In fact, I wouldn’t even care if someone, somehow, never communicated at all—if they were happy with that.
And there is the fundamental “what is this person’s experience” versus “what is our experience of this person” shift in perspective-taking that these fancy, real people don’t seem to fathom. Autistics have tried, over and over, to explain… The double empathy problem, the quantitative data backing it up. Jokes about the inherent allistic impairment in theory of mind, reblogged thousands of times.
But this particular poster hall of hell has hardly thought to cite even the formal/peer-reviewed participatory/Autistic-led research, let alone our social media. Or maybe it’s just that the perspective-taking would challenge their premise: Our personhood as simply a pattern of behaviors. Our eyes, so empty. Our lives, so awful as to necessitate prevention. Our flickering fingers, the flutter of our hearts: so easy to just drive off bridges.
So I wave ever-so-carefully (quiet hands) to start up that automatic revolving door. I silence my body strategically enough to even be invited halfway in. They give this crumb – an apparent effort away from exclusion. Aching, always, again: I accept these invitations to tokenism.
Once inside, I attend most sessions, despite the sheer obscenity of their circle jerk sources. I approach the mic, ask my questions—at least with my screen, if not in my language. Finally I present: a special session. I offer my challenge; I point out that there is in fact an exit to their revolving door. If I can do the work.. If I can tolerate halfway in… Couldn’t they try? Tolerating halfway out? Citing a damn blog?
But eventually, aching, always, again: I accept the participation ribbons. Because they do not seem to actually care.
There are, I know, a few allistics who notice. Acquaintances? Colleagues? Allies? They manage to shift some sliver of their perspective-taking. Arguably, they are trying. It’s indeed fathomable that they care. Probably they are who got me into these rooms in the first place. And it’s enraging how genuinely grateful I feel towards that—the fact that life set me up to feel gratitude for such sluggish slogs towards change. I’m seething, seeing myself smile in genuine relief just to choke on this air and starve on these crumbs and appreciate this change. The small gains, always coming so slow. These few fancy, real people even willing to acknowledge that the lethargy of each inch must feel like a punched gut. They are trying. They care.
And so they arrange cots in a quiet room (I gag on the memories) and several days’ worth of travel stipend (it outweighs nearly two months of my life). Some reserve chairs—maybe even funds—for the attendance of support people. Some dim the lights; try to hush the crowd that’s never heard of flapplause. Some book interpreters. Some set aside space in the auditorium for people using mobility devices—maybe even know how to amplify AAC devices. Some check in when they see that headphones have had to replace the flowers in my hair.
And yes, it’s true: back home my inbox boasts offers of paid work more allies have waiting… as if the world does not wear me down so much as to turn my disabilities into strings of crises, my spoons into knives. (As if the world never taught me to wield these weapons against myself.) I have to say no twice before it ends up easier to stop arguing the asks. This is the evidence that they care. Or at least that I’ve pretended proximity so perfectly they think, after all, they can train me to Speak like they do. This is the change. Such sluggish stabs at my back.
Discussion: At What Cost?
Their acknowledgement of my punched gut—maybe even of my ancestors’ icepicked eyeballs?—the cost is accommodating their fragility. My gums nearly bleed discussing the shattered glass of their shame. The beds in the quiet room—the cost is 5150 flashbacks etched into my brain. Even the plastic knife scars flash as strong as strobes etched into my skin, and the neurotypicals do not look beyond the glare.
The chairs, stipends, attendant care, interpreters—the accommodation of such basic needs—the cost is the implicit obligation to skip the breaks they failed to build into the schedule. Breaks which I am allowed the exception of ducking shamefully out of sessions to earn. That is, I get to miss the information the real people get to learn (the utter lack of plain language costs only my time and frustration).
The space to sit, the chance to talk, the dimmed lights, the attempt at flapplause (only at my special presentation, as if I wouldn’t be hurt by the roar of clapping the whole rest of the convention)—the cost is condescension about special needs. I even adopt these scripts, proactively paying for even the slim chance of a weighted blanket; the currency is my internalization of such othering. The noise-cancelled check-ins—the cost is each assault of concerned fingers against my flight-or-fawn shoulder. And so I flee. Some say they understand. Some even facilitate the flight.
The cost is this weekful of fawning.
Even now: such failing flicker of my fingers. Such faltering flutter of my heart. Such an ache of oxygenless air, while my stomach cramps over their crumbs. My un-hit head so haunted by the potato sack consolation prize. The thinly-disguised threat of intervention: I can’t seem to shake from it my skin. Nor how much of me it steals when I try to Speak like them.
Conclusions: The Cost is Me
I am the token. They run the economy.
The grants will keep flowing into the revolving door of their research.
My kin still crowdfund. My ancestors keep on dying.
And my prosody? It’s still measured against my peers.
(Positionality Statement: The Author’s Bio)
Xavier Penn is Autistic. Somehow, he just keeps being invited to these sorts of things. In certain moods, he’ll admit: he’d be better off burning them down.
