The neurodiversity movements needs its shoes off, and fists up.

The neurodiversity movements needs its shoes off, and fists up.

CW: Mention of sexual violence.

Thanks to Tracey Hickey for intellectual support in drafting this essay.

[Photo: Graphic in deep red and black, with dark/dramatic aesthetic, showing many fists raised in the air. White large text says Neurodiversity Movement: Fists Up. Small white text says Autistic Hoya.]

There is a book set to be published in the next few weeks that features a set of short essays on the future of disability studies (Manifestos for the Future of Critical Disability Studies, Vol 1.). I’m sad and concerned about one of the of the essays in the collection, titled “Dear neurodiversity movement: Put your shoes on” by Dr. Sonya Freeman Loftis (also an autistic advocate), which, among other faulty arguments, cites a 2011 blog post of mine to support a point I strongly reject and oppose.

Dr. Loftis’s argument in that section of her chapter decontextualizes my post by attributing a meaning and intent to it that I did not have and do not support. The citation follows the statement, “It is disturbing to me how incredibly angry people in the autism community have become over terminology,” and seems to be referencing a particular paragraph in that post which references civility, immaturity, and sensitivity in arguments about language preferences. My intent with that segment of the post, which I overall still support although my exact thoughts have naturally changed in the last seven years, was primarily to address autistic people disagreeing with one another, and to urge us to use basic respect and decency — not to suppress all anger and other harsh sentiments. The footnote accompanying the citation says, incorrectly on my reading of it, “Autistic activist and influential blogger Lydia X. Z. Brown has also called for an end to this anger.”

And while I appreciate what it seems Dr. Loftis has attempted to do, in qualifying many of her statements in-text and in footnotes, I also profoundly disagree with the vast majority of the author’s arguments and intentionalities, and would like to set the record straight while offering a countering perspective and call to action.

(Dr. Loftis, to be clear, this is not a call-out, but rather, I hope, an invitation for further discussion and dialogue with you as a fellow member of the autistic community.)

I need my shoes off.

I’m currently sitting in an office behind a desk with my shoes on. I would strongly prefer that they be off. In fact, I usually sit at desks with my shoes off, because it’s infinitely more comfortable and freeing for my sensory and proprioceptive needs to take my shoes off. (I have a specific posture with my feet and my legs that is most comfortable for me, which results in leveraging my feet against part of my shoes to create a sensation of pressure, while one or both of my knees or ankles is also pressed against the leg of a table or desk for more pressure.) The only reason my shoes are still on right now is because it would take too much coordination of effort and steps involved to take them off, and eventually I will need to walk outside (a task that for me, always needs shoes).

Several years ago, when I was working in an office environment for the first time, one of my supervisors noticed that I was sitting at my desk with my shoes off, and she pulled me aside to tell me that that was generally unacceptable and unprofessional to do in the office. She mentioned that it would probably be okay to take my shoes off if no one was walking by and I was just at my desk, but that if I needed to go anywhere, like walk to the copier or heat up my food in the microwave, I needed to put my shoes back on.

Since then, I’ve found myself in vastly different spaces and places, everywhere from radically defiant queer and trans people of color gatherings in apartments shared by several roommates to the glistening downtown high-rise office suites of white shoe law firms; from the grimy visiting rooms in jails and prisons that sometimes have cockroaches crawling across the floors and always have prison guards watching for the slightest reason to enact more violence against you and the person you are visiting today, to the esteemed halls and elegant receiving rooms of the White House and Capitol Hill. (I usually keep my shoes on in all of them.)

But to the larger metaphorical argument made in “Dear neurodiversity movement: Put your shoes on,” I have to respond with a resounding and vehement NO. I do not believe in even attempting to appease the impossible, asymptoptic standards of respectability politics and (white, abled, cis, masculine-centric) professionalism simply because such attempts will always and inevitably be doomed to fail.

Respectability politics is a failed project.

I wrote “The Significance of Semantics” more than seven years ago, when I was emerging into and exploring the autistic activist community beyond the folks leading the work in Massachusetts where I grew up. Since then, I’ve taught an undergraduate seminar, served as chair of an independent state government agency, and begun work in the legal profession after earning my law degree (by the skin of my teeth, I might add). I’ve also lost out — I’ve gained perhaps nearly as many enemies as friends and cordial colleagues, if not more, in both activist and professional spaces; I’ve lost out on amazing professional and academic opportunities, many almost certainly because I refuse to be silent about violences such as white supremacy, ongoing settler-colonialism, and racism-ableism; I’ve received enough rejections to make a single-spaced bullet-pointed list of them nearly ten pages long.

Whether I wore a suit and kept my shoes on, or not, did not change this. Whether I decided to publicly or demonstratively stim or not, did not change this. Whether I decided to disclose and declare proudly that I am autistic and proud, or neglect to mention it, did not change this. I know who and what I am, what I am capable of achieving, and what and how I am worth(y). Sometimes I don’t, won’t, or can’t measure up. My ability to mask or pass has minimal effect.

I’m constantly caught between demands that I perform an impossible level of respectability, professionalism, or whatever you want to call it, or else be completely discarded and invalidated, and the reality that no matter how well I can operate in stealth or mask or pass as having any manner of privileges I currently lack, I will still be ignored and dismissed and accused of being too radical, too militant, too intense, too crazy, too immature, too unpressional, too passionate, too scary, too angry, too bitter, too resentful.

In a recent workplace, a supervisor (who was a nondisabled white man) attempted to pit me and one of my friends (who is a nondisabled Black woman) against each other in a classic game of divide and conquer. All of our other colleagues were white, so of course, we were the only two targeted for constant micromanaging and condescension. He insinuated repeatedly that I was incompetent and incapable of performing my responsibilities, and eventually began to exclude me from work-related emails while only emailing my friend — enacting misogynoir (racist misogyny targeting Black women) against her by demanding she perform extra labor (i.e. all of my work), to pick up for me, and enacting intense ableism against me by presuming my incompetence and assuming I needed to be taken care of, handled, or managed. At one point, my friend had several absences because of a personal emergency, which he excused in writing. Later, he blamed me for all of the absences — stating in writing that I was absent each of those times — and penalized me for them. The facts that I did my damndest to fulfill my duties (and go above and beyond), knew how to dress court-appropriately, and wrote excellent professional and legal work did not matter.

Respectability politics didn’t save me then, and they won’t save our community or movement now or in the future either.

Believe me, I understand the need for day to day survival. If wearing a suit versus a t-shirt and jeans will make a difference in whether my advocacy for/with a friend or client works, of course I’ll wear the suit. If using certain academic/professional field-specific terminology will help an audience understand an argument I’m making, of course I’ll use that terminology (so long as it’s not something I find inherently dehumanizing). If I need to be careful about not dropping the word “fuck” during a job interview (which we all should strive to not do), of course I’ll be mindful of it.

Many of us also understand both how fucking privileged it is to be able to enter the world of higher education, let alone exit with the degree in hand, and how much more respect (and therefore credibility, legitimacy, and potential influence/ability to intervene in terrible situations/systems of power) we will gain if we do so, respect that can help us and those we care about survive. I know this intimately, because I’ve already experienced how much easier it is to move through certain specific spaces now that I can put letters after my name. But no amount of degrees or professional credentials will ever unmake me as a neurodivergent, disabled, queer, nonbinary trans, East Asian weirdo. I still have people ask me where my parents are.

I will never blame, shame, or guilt any other marginalized person (let alone those of us at the margins of the margins) for using respectability politics as a(n imperfect, and not guaranteed) survival or coping mechanism, and I firmly believe it is harmful and dangerous whenever other community members do so. We should instead always strive to support one another in using whatever tactics we need to survive. At the same time, I believe that any argument in favor of a community-wide adoption of/adherence to respectability politics (even with the caveat that not all people have the privilege to be able to pass or mask, either at all, or consistently), is also deeply harmful and dangerous.

Individual people (to the extent they are capable of doing so) may need to reply on respectability politics simply to survive — to survive school, to survive the terrifying experience of involuntary commitment, to survive a potentially deadly police encounter, to survive in the capitalist society we live in that assigns value and worth based on productivity and labor. I respect and affirm that.

Our movement, however, needs nothing of respectability politics. Accepting — conceding, surrendering, submitting to — that will only erode our movement until it crumbles entirely. Respectability politics is what’s gotten us into reliance on foundations and nonprofits, and elected officials and bureaucrats, and policies and programs that only benefit the most privileged and resourced members of our communities at the direct expense of the most marginalized. Radical, militant anger — and radical, militant hope, and radical, wild dreams, and radical, active love — that’s what’ll get us past the death machines of ableism and capitalism and white supremacy and laws and institutions working overtime to kill us.

Anger is a necessary rhetorical and strategic tool.

“stop telling people not to be angry.

anger can absolutely be transformative. none of our movements would happen without it. anger can help reveal what is most important to us and give us a kind of clarity that few other emotions can.

anger is fire and fire is powerful. we can channel anger in useful & accountable ways.”

— Mia Mingus

The idea that anger necessarily, innately, and inevitably harms a movement and drives allies away is a red herring intended to distract movements and communities away from legitimate (and completely rational/logical) anger instead of focusing our attention, and labors, on serious matters of societal, intra-community, and interpersonal violence.

Yes, of course, the most effective tactic to use when a would-be ally makes a mistake, particularly one that causes serious and lasting harm, may depend very much on context, and may not always (or even often) be the tactic of yelling at that person. It is not strategic to use only one tactic (whether that is the tactic of gentle, placating correction in private, or the tactic of extremely loud and public harsh callout, or anything else for that matter) for every possible situation or encounter. Few, if any of us, would contest that.

And I’m certainly the last person to argue in favor of unnecessary (and frankly, ableist, racist, and classist) gatekeeping, litmus tests, and nitpicking of terminology or exact professed politics for people in activist or advocacy spaces (beyond what I hope would be clear boundaries and limits for those I’m willing to organize with, which might of course be somewhat different than what I’m willing to accept from people not currently invested in organizing, while still sharing a common baseline). Of course, some strong boundaries are good and healthy and necessary, and often hard to set and enforce because we have been traumatized by so many violations over many lifetimes, individually and collectively. Like not accepting any amount of sexual harassment whatsoever, let alone any other form of sexual violence, in our communities, or apologetics for white supremacy.

I recognize the tension inherent in calls to both educate and lift up all community members, as many of us who are marginalized in one way may yet actively participate in oppression and violence against people marginalized in different ways (since we all have capacity to harm, and since interlocking systems of oppression work by pitting us against each other), while also rejecting firmly the notion or expectation that the most marginalized have a lifelong obligation to perform the uncompensated and exploited labor of personally educating those who hurt us in a way that doesn’t threaten them. But we can’t expect to do the work of solidarity, of striving to practice allyship, if we aren’t willing to face the anger of those we, our ancestors, and/or our communities have harmed in the process. (That doesn’t mean that each of us must individually submit to public flagellation as a community punching bag, or that we have to be happy about someone else’s anger being directed at us. But it does mean that our discomfort with someone else’s anger, if we’re the person who caused them harm, is less of a concern than that person’s (re)traumatization. We can process it… with someone else. And if we must, perhaps because the expression of anger could also be retraumatizing to some of us, we can choose not to be around that person in the future, though that isn’t necessarily a good strategy to apply to each situation in which someone expresses anger for any reason.)

In organizing and activism, sometimes it makes sense to display calm. Other times, it makes much more sense to kick and scream.

We can be kind, compassionate, caring, and gentle (when appropriate, as it may be in many cases, though certainly is not in many others) with would-be allies and with fellow community members, without holding ourselves to the superficially saccharine or dehumanizing standards of respectability, and the farce of moral superiority that comes with condescendingly condemning use of anger in our rhetoric and strategies.

But we can’t possibly be committed to the long-haul work of liberation and justice — the freedom work, the community-building work, the creating-alternatives work — without completely rejecting the false promises and mythologies of respectability politics and its cousin, “civil discourse.”

Public stimming is beautiful, and we should keep doing it.

Dr. Loftis also writes against certain forms of public stimming for an audience, which I’ll quote here at length before responding:

[begin quote — internal paragraph breaks added]

I do think that Autistic activists need to think carefully about our intention, motivation, and goals in the public performance of stimming. When I see other Autistics performing authentic stimming in public (stimming that can’t be controlled, or stimming that expresses joy, or stimming that relieves anxiety), I am proud of them and joyful with them.

But sometimes I have also seen activists engaged in stimming that was not authentic — stimming deliberately used to get attention or to make a statement. I’m not sure if this staged stimming is good and true: I’m not even sure if it could properly be called “stimming” (if stimming becomes divorced from its joy, its delicious rush, its natural high, is it still stimming?). And when we aren’t stimming for joy, because our bodies want and need it, because it is physically releasing us from neurotypical oppression (the rule of quiet hands), then who or what are we stimming for?

I think that our public stimming (like our private stimming) should be real and true (and not masquerade). It troubles me to see stimming that has an agenda and is divorced from authentic Autistic emotion, from authentic Autistic body language, from an authentic Autistic experience. I’m not telling you where and when and why to stim. (Don’t ever let anyone tell you that.)

I’m calling for us, as individuals, to reflect on our motivations for public displays of stimming — particularly when we are deliberately choosing stimming as a mode of communication aimed at a neurotypical audience . If our primary audience is neurotypical, we must remember that stimming does not signify in the majority neurotypical culture what stimming signifies in the Autistic sub-culture. Are we always sending the right message, via the right medium, to the right audience? In short, stim loud and proud (and authentically and thoughtfully and joyfully).

[end quote]

I wrote an article titled “Autism isn't speaking: Autistic subversion in media and public policy” in a book published last year (Barriers and Belonging: Personal Narratives of Disability). Part of my article discussed how and why I deliberately choose to stim by hand-flapping and sometimes rocking, in public spaces. I did not hand-flap or rock intuitively as a child. I did not start to do so until I was well into college, and by then it was always a conscious, deliberate choice. This does not make stimming any less authentic than it is for someone who has always done it their entire life.

Stimming is enjoying the physical, proprioceptive, sensory movement and input, or using it to modulate or self-regulate. We know from experience and community narratives that autistic people stim (in various ways) for various reasons, including because of anxiety, because of anger, because of sadness, because of overstimulation, and because of joy. We know it is inherently communicative, even if the communication is not understood/received by the audience.

When those of us who choose to publicly and intentionally stim do so, we are not inauthentic or fake, but we are giving ourselves permission to enjoy bodily movement forms that are peculiarly (though of course not exclusively) autistic, and to incorporate them into our palate of expressive communication and self-regulation. Doing so for political reasons does not ignore that neurotypical and other non-autistic people will almost certainly misinterpret it, or attribute horrible ableist meanings to it, but rather, is a direct discursive challenge to that kind of ableism.

It is a political choice, because it is choosing to be openly and unapologetically autistic. Being neurodivergent in public, ever, is putting oneself at risk. And if we’re choosing to stim in public in a way we didn’t do intuitively earlier in life (or had deliberately beaten or ABA’d out of us, in some cases), we are of course aware of and assuming that risk. We talk about the concept of “dignity of risk” in self-advocacy for a reason.

My chapter from Barriers and Belonging mentioned a discussion I had a friend who is a convert/revert to Islam from a white Christian family. That friend told me that she chooses to wear a hijab (a head scarf) not because she believes that wearing a hijab is either mandatory for Muslim women or that it is inherently more modest than not wearing one, but rather because it is a publicly recognizable symbol of Muslim identity (Muslimah identity in particular). Her choice to wear hijab despite not believing it is mandatory or morally preferable, is a political one. It is “performative” in the sense that it communicates and performs something for public reception/consumption/spectacle, by choice of the person doing so. But performative does not mean inauthentic, let alone that it undermines others in the same community.

Similarly, I choose to hand-flap and rock in some public spaces, in front of neurotypical and other allistic people not because I am oblivious to the implications of it, but because I am keenly aware of the implications in a neurotypical-dominant society, and I choose to defy them. (Of course, this is also a privilege, as a light-skinned East Asian person, who is unlikely to be criminalized as a drug user or dangerously violent person for stimming and then put at risk of being shot and killed. But that does not mean I should refrain from all public stimming either. Visibility is not a worthy goal in and of itself. But there are many ways to challenge prevailing ideas and values.)

That's not to say public, intentional stimming is for everyone, or that it's the best or most important tactic to use to challenge ableist ideas about autism and neurodivergence in general. I value all tactics and contributions, and this is simply one of them.

Integrating neurodiversity with disability justice does not require a pure social model, and never did.

Dr. Loftis’s article further challenges the neurodiversity movement — rooted in the autistic community, though of course by no means unique to autism — by arguing against a pure social model of disability for autism. Her implication is that the neurodiversity movement overall adopts an uncritical version of a pure social model of disability, while she argues that “[a]utism will never be completely de-pathologized — nor should it be.”

I don’t believe in a pure constructivism (pure social model) approach to any disability, though I do believe strongly in the need to depathologize autism.

The reality is that being an autistic person sometimes hurts and sucks, and would probably still hurt and suck at least sometimes even if the rest of the world were actually maximally accommodating and understanding and accessible and universally designed (though it would certainly be a lot less often, and possibly less severe). That reality doesn’t undermine the core tenets of the neurodiversity movement, though. Celebrating being autistic doesn’t mean adopting a false, oversimplified view of autism as only sunshine and rainbows and unicorns.

The neurodiversity movement is not about — or at least, it shouldn’t be about — rejecting every narrative or testimony or discussion of things that hurt or suck about being autistic. Depathologizing autism — or any disability — is not about stripping lived realities from our understanding of that disability, or denying the full breadth and depth of narratives of those with lived experience, or refusing to engage with rhetoric of pain, suffering, treatment, or cure. (Eli Clare writes eloquently on this topic in his new book Brilliant Imperfection: Grappling with Cure.) What it is about is ridding autism, or disability in general, of the notion of inherent lack, brokenness, or defect. Many autistic activists in the neurodiversity movement have said this, in hundreds of different ways, for decades. It’s not a new concept.

Recognizing being autistic as who we are (identity) and how we exist in the world (experience, including negative, painful, and unwanted experiences) are not mutually exclusive or contradictory. Neurodiversity and Disability Justice, taken together, are indeed celebrations of who we are and how we exist in the world. They are also movements rooted in lived experience, which ask us to understand and engage with the many ways we relate to our bodies and brains, inside our own minds, and in social context.  

Taking our shoes off and raising our fists up.

As a young law graduate beginning legal work in a position where I will be responsible for legal advocacy for disabled children and youth facing all manner of violences in schools, I understand intimately the need for strategic and targeted “professionalism” in certain venues for specific reasons, by those of us who are able to be in and who choose to work in those venues.

But as an organizer and an advocate, I will always push for our movement as a whole to take our shoes off wherever we can (because our comfort is in fact important and valuable for its own sake), and keep raising our fists up.

Dr. Loftis writes, “We have protests to stage and speeches to make and hearts to change. We have cultural narratives to rewrite. We have autistic children to save. It is going to be a long and hard road.”

Yes. We have protests to stage, driven by the fuel of our righteous anger. We have speeches to make, written from the soaring pleas of our individual and collective trauma, and our wildest dreams of joy and freedom and love. We have cultural narratives to rewrite because they really do hate us and they really will kill us, and if we’re going to rewrite the narratives, then there’s no reason to hold ourselves back from our most radical and defiant rewritings. We have autistic children who need us to support them as architects of their own liberation against the schools and clinicians and institutions and police and prosecutors who would crush and destroy them.

We’re going to need our anger and our public celebrations of stimming and our complicated, imperfect, messy selves for this long and hard road, because we need all of us, and all of our tactics and strategies, to keep a movement going and ultimately, to win.

x

Why do I think I'm autistic . . .

This was actually originally a question on a survey as part of a research study (which asked me why do I consider myself to be autistic, in addition to having once been handed an on-paper diagnosis, which yes is a class privilege to be able to get), but my answer ended up being so long-winded that I'm going to put it here, just in case it's helpful to anyone who might be out there questioning and wondering whether they might be autistic.

(This is totally unscientific and unempirical, but based on anecdotal observations from conversations with hundreds/thousands of other autistic people -- both with formal diagnoses and without them, both speaking and nonspeaking, etc. -- it just seems that all of these characteristics are *more common* in autistic people than they are in nonautistic people, and that the more of these kinds of characteristics someone has, the more likely they are to be autistic. Obviously anyone who isn't autistic -- which includes neurodivergent people who aren't autistic -- could have any one or more of these characteristics too. And of course, there are characteristics of being autistic that seem to be really common in autistic people, especially as compared to nonautistic people, that I don't have.)

Like many (but of course, not all) autistic people, I ...

- Keep an erratic sleeping schedule, and am often nocturnal by both instinct and preference.

- Absolutely suck at executive functioning, which involves planning tasks, prioritizing tasks, initiating tasks, following through on tasks, meeting deadlines, organizing complex multi-step tasks, etc.

- Have very uneven skills academically, but present as conventionally "gifted." I functioned really, really well academically from K - 12, and then when I went to college, a lot of coping skills died. I developed some stuff, sure, but I know some stuff went straight out the window too, because huge changes, and also almost total lack of structure/scaffolding. ("Now you're an adult, and you must be totally independent, and if you can't do that, too bad f u.")

- Have hypersensitivities in all my senses (to noises, to smells, to tastes/textures, to touch/tactile sensation, to sights), which create both (1) sensory-seeking opportunities (I still rub a silk sleeve over my face -- the very same one I've had since I was 3 and I'm now 22; also, tassels tassels tassels -- yes I did in fact get a picture of myself inside the White House rubbing a tassel there all over my face) and (2) sensory-averse reactions (I am physically hurt by a lot of fluorescent lights; also, touching me lightly -- not firmly -- hurts).

- Tend to be more oblivious to surroundings/background information/implied knowledge. (This includes social knowledge -- everyone else picks up on updates in people's lives/doings much sooner than me; spatial knowledge -- I can't recognize the same location in the dark versus in the light and also won't realize that objects/buildings/things exist unless they're explicitly pointed out to me; etc.)

- Frequently speak in circles, because I have extreme frustration when I believe the other person/people do not understand what I'm trying to communicate, so I attempt to rephrase (and can rephrase an infinite number of times, and go on for-fucking-ever with this unless stopped).

- Take great pleasure out of intense fascination with particular topic areas in ways that non-autistic people often do not.

- Relate to other people (and show that I care about them) specifically by seeking out gifts/activities/internet memes/other tangible or observable things that relate directly to their preferred interests or activities, but am often perceived as just creepy or weird by non-autistic people for doing this.

- Absolutely hate crowds and crowded locations because they're overwhelming and drain me of energy to start, do, or finish things, or just to concentrate, or just to survive.

- Occasionally lose the ability to produce oral speech even though I usually have the ability to use oral speech, especially when under extreme stress or exhaustion.

- Stim, like by using my tongue around my mouth in specific ways, or touching specific kinds of textures, or spinning in circles for a long time, or playing with water forever, including in fountains attached to government buildings, which results in being yelled at by security. (I stim when I'm anxious, when I'm bored, when I'm upset, when I'm happy, or when I'm excited. Also when I'm trying to communicate to another autistic person that I exist and am also autistic.)

- Tend to like certain types of structure and routine in ways that are not typical for non-autistic people. For example, whether playing with toy cars, Barbie or Bratz dolls, or Star Wars action figures, I would always line up all of the figures in specific orders/formations and three-dimensional spatial locations in my play area that almost never changed, which confused the hell out of all of my non-autistic friends/playmates. In another example, I'm also totally okay with eating literally *the exact same thing* for every meal for months on end, and this does not bother me.

- Extremely detail-oriented. For example, I write novels and do collaborative writing style roleplaying, and in both, I typically develop in immense detail aspects of constructed languages, socio-economic-political systems, cultural norms/histories, etc., as well as populating worlds (both those based on the real world and those that are totally sci-fi or fantasy settings) with hundreds or thousands of characters thought out in depth.

- Am highly attracted to and empathetic with animals (like cats and dogs) and fictional characters, which I feel are like real people and whom I care about in the same way I do as real people.

- Tend to take an incredibly long time to develop close friendships with people, and am constantly afraid of losing any of the friends that I have, because many of my closest friends in the past aren't my friends anymore (often but not always because they decided to not be my friend because I wasn't cool).

- Was severely bullied throughout school, both by other students and sometimes by teachers, for being an obvious weirdo. I'm usually perceived as out of touch, socially awkward, weird, abnormal, and just not with it when compared to a lot of my peers.

- Won't shut up when I really care about something, and am often perceived as arrogant, stuck-up, a know-it-all, full of myself, showing off, etc. even though I'm just trying to share information that I think the other person will care about or benefit from having.

- Don't really think in linguistic concepts/language. I think both visually and conceptually. So my thoughts happen in images (still pictures, moving videos, or four-dimensional fluid shapes/lines/fields/things-that-aren't-describable-but-I-probably-sound-like-I'm-under-the-influence-of-LSD-now) that represent concepts.

- Hate group work. With the burning passion of ten hundred thousand flaming suns gone supernova.

- Can be both hyposensitive (not that sensitive) or hypersensitive (so much sensitive) to pain. Like, I scream and cry when getting shots. But after having my wisdom teeth out, due to combination of apparent stoicism and serious sensory aversions to any pills ever and most liquid medications, didn't really take any pain meds once I went home.

- Tend to be either really good intuitively at doing a thing, or really, really suck, and I keep sucking at it in the same pattern of sucking at it.

- Think systematically or in patterns. See above. (Example: If I'm worried or anxious about something, I will repeatedly go over every possible outcome, from the best possible one to the worst most catastrophic one, and everything in between, in great detail as to how/why each could happen, and the likelihood of each outcome, but despite knowing rationally that the most catastrophic ones are usually not that likely, will still anxiously panic over the possibility they are true.)

- Rely on scripts (entire encounters, types of situations, for behavior, or for what to say, etc.) for like 95% of my interactions involving other people, including other autistic people.

- Really, really like the feeling of pressure against my body. I often sit with legs/ankles crossed so I feel the pressure, or with my hand between both knees (I've learned that people assume I'm sexually touching myself in public if it's any higher up my leg). I like to sit so that my legs/ankles/feet can press against the legs of chairs or tables. I like to fall asleep with my arms tucked under my torso. Weighted blankets are awesome.

- Have some super awesome fine/gross motor skills, and some totally sucky fine/gross motor skills. For example, I have highly calligraphic scripted handwriting, and do black and white drawings in pen only (no pencil involved ever) with highly detailed cross-hatching. But then again, I've never reliably learned how to tie my shoes or do monkey bars or jump rope or hula hoop like most other kids I grew up around did.

- See squiggly bright lines and dots of various constantly-shifting colors whenever I'm conscious, which includes as I'm falling asleep too. (I'm sighted, which means I'm neither blind nor low-vision -- not sure how/if blind or low-vision autistic people have these things.) Some people call them "the floaters."

- Always see the world in static (like the kind of "noise" that makes photos not great quality). Someone asked about this on the Facebook, and yes, I have the thing where I always have thought I was seeing molecules or something everywhere, in all lighting and wakefulness/sleepiness conditions, because the whole world is comprised of these tiny dots that make up literally everything I perceive visually.

- Have HIGHLY vivid, frequently narrative dreams, many of which I remember in incredibly detail. (Many of mine are also lucid.)

- Am synesthetic, meaning I experience many kinds of sensory input as *other* kinds of sensory input. Like, listening to music or even someone just talking, produces colors and shapes and yay.

- Will re-read or re-watch entire books or movies or tv shows -- or specific scenes in them -- that provoke deep, intense emotional reactions in me.

- Am highly empathetic to the point of over-empathizing. I may not always be able to process cognitively what I'm experiencing (see point below), but I am overwhelmed by the emotional responses of people around me -- which includes things I read on the internet, because I'm experiencing them as the other person does. (Not in the way of, I know how it is to be them when I'm not them or don't have the same experiences, but in the way of, their anger settles in me, or their sadness settles in me, and I can't get rid of it.)

- Have trouble identifying/naming and separating/distinguishing all of my emotions or even bodily sensations.

- Am not antisocial. I'm an introvert, but I display a lot of outwardly extroverted-seeming traits, like talking to lots of people, going to events with lots of people, and having people over my place. Social interaction can be fun (or can suck massively, depending on who is involved and what they do to/around me), but it's draining. I need lots of extra time to recover. This is true even if the other people involved are also autistic.

- Desire to have some amount of environmental control that it seems like nonautistics tend not to have (either in general, or as intensely). Like, I get really anxious if other people touch or move my belongings/possessions, even if they're people I know really well and trust in general.

- Show that I trust others by opening up to them, emotionally and about my experiences.

- Often feel marginal and like an outsider (not just because of various marginalized experiences/identities that I have) even when I theoretically should be able to belong to a particular group.

- Typically have gravitated to be friends with people who were significantly older or significantly younger than me, and not my age-peers.

- Tend to do activities the exact same way all the time (like how I make pasta sauce or mint hot chocolate) even when I learn a better/easier way to do them. This extends to what I order in restaurants. (I love trying new foods, actually, but if I know I have a favorite thing, why wouldn't I order my favorite thing? Why would I order a second or third favorite thing?)

- Experience distinct auditory processing disability stuff. I hate conference calls maybe almost as much as ISIS hates the existence of everyone-who-isn't-ISIS. I will almost never understand your name the first time you tell it to me unless it's also on the business card you're handing me or the name tag stuck to your shirt / hanging from your neck or the placard in front of your face. You have to repeat it.

- Can't recognize faces. (It's called prosopagnosia or faceblindness.) As a sighted person, yes, I do see your face. I am capable of seeing people next to each other and realizing they do not look identical, even if they present their gender very similarly, are close in age, have similarly sized/shaped bodies, and are from the same racial group. But I can't reliably tell people apart in sequence, or out of context from when/where/how I usually encounter them, or after a few days or weeks or months since regular contact. I can sometimes, to varying degrees of reliability, recognize people on other characteristics, like voice, manner of speaking, posture, body movement, other distinctive physical features, or hairstyle (including facial hair when someone has it), but not by face. I can also figure out if someone else knows me often by their body language (like prolonged eye contact, suddenly smiling, or referring/addressing me by name when I'm not wearing a nametag or ID), but I have no clue who they are and will *never* have the experience of feeling like I recognize someone but not remembering their name. Half the time I'm faking that I know who you are. Just tell me your name up front next time.

- Have significant trouble in group settings including purely social, unstructured ones. I can never tell if it's my turn to talk, or if there's an opening where it's okay to jump in with a comment/question/story in the convo, and frequently, by the time I figure it out, it's too late and suddenly I'm interrupting someone and have just become an accidental asshole.

- Collect random shit I don't actually need but am somehow convinced I will need later. Like receipts. Dating back to 2004. And fortunes from fortune cookies. And tags from clothes. Literally everything. All this totally useless stuff that it pains me to toss out because what if I need it one day.

- Have vastly varying periods of total distractibility where absolutely nothing happens even things that really should (like eating food) and periods of doing ALL the things!!!!!!!!!!1eleventyone where way too many things somehow happen. I don't reliably have the same abilities, skills, or energy/capacity to do the same things from one point in time to another.

- Can hyperfocus for hours at a time on ironing out the tiniest of details necessary to complete one activity/task, to the point where I forget that things like pissing/shitting/eating/drinking liquids are things that a body generally needs to do. For over 18 hours sometimes.

- Hate tags. Yes, tags. They are horrible. Why do people insist on putting them on clothes? Anywhere? Ever? But seriously, especially the really large, stiff ones in some shirts right where the neck is.

- Suffered for having my extremely thick, easily tangled hair (which used to be very long, especially as a kid), which meant I went through what both my partner and I call the Daily Torture Session. It was worse than just frustrating or annoying. It was actually painful and it sucked. And no one would believe me most of the time, because they assumed I was just exaggerating or being overly dramatic. But it's true.

- Often begin to talk louder and louder, especially when I'm excited about something (which can include being excited about knowing about something), without realizing it, or being aware of exactly how loud others perceive me as.

- Constantly grind my teeth or chew on my own tongue (to the side of my mouth). I'm not sure if it's a pressure-seeking thing, or another kind of sensory-seeking, or a specific kind of stimming, but it's been a thing my whole life, and was the reason I had to get a retainer when I was a kid. I know a lot of other autistic folks who bite or chew on their fingers, hands, or arms as well as or instead of doing the teeth grinding thing.

- Have a very powerful and strong, intuitive sense of justice and fairness. It hurts when something seems wrong, when someone seems like they're being fucked over. I usually immediately relate to and identify with the underdog or the outsider.

- Don't care much about certain types of reputation/outward perceptions of me (like, buck the system; think whatever you want to think; fly that freak flag high; I'm here and queer get used to it; I once showed up to a White House event in a t-shirt while everyone else was in Western Business Attire; etc.) but am also extremely anxious about what others think of me vis a vis my character, my integrity, whether I'm worth being/having around.

I'm sure there are many more, but another thing I have is anxiety around lists because I'm always wondering if I left something off the list (and usually do/did). (Bonus! If you keep coming to this page enough, you might notice I keep adding to this list, for the reason stated earlier in this paragraph!)

No really, I wasn't kidding about the White House tassel thing: 

From December 2013, inside the White House. Clearly the thing to do is to find the nearest large fluffy tassel and rub your face all over it in stim-heaven.

My original description:

The tassels on the drapes were SO STIMMY YAY. (Pretty sure this is not the normal way to act in the White House. OH WELL.)

A total stranger took this picture because I apparently was hilarious? So I got them to email it to me, for your viewing pleasure.

Photo by Nicole Shambourger.

Image: Me dressed in a dark pantsuit and patterned, embroidered red scarf, very happy, sticking my face into a giant tassel decoration on drapes in the Green Room of the White House.

***

If you are wondering or questioning whether you or someone you know might be autistic after reading this post, here are some resources that could be helpful:

• Atypical Autism Traits (gender neutral version)
• Real Social Skills
• I Think I Might Be Autistic: A Guide to Autism Spectrum Disorder Diagnosis and Self-Discovery for Adults by Cynthia Kim
• Ask An Autistic by Amythest Schaber
• Who Can Call Themselves Autistic? 
• Autism Women's Network's Autistic Women Welcome Packet 
• Autistic Self Advocacy Network's Welcome to the Autistic Community Handbook

The Politics of Coming Out

What does it mean when Autistic people say that they are "out" as Autistic or "closeted Autistics?" The language is borrowed from the queer community, as anyone familiar with LGBTQQIA issues may know. It means to be publicly Autistic, to acknowledge one's Autisticness to one's community, to take some pride in being Autistic. It means identifying as Autistic outside safe space, and thus, accepting the potential consequences of being known as Autistic—accepting the risk of assault and victimization, silencing and erasure, paternalism and patronization, infantilization, ostracism, de-legitimization, sub-speciating, harassment, and retaliation. It also means publicly acknowledging one's membership in a particular community and affinity to a particular culture—an Autistic community, an Autistic culture, an Autistic aesthetic, an Autistic way of living and being.

Some Autistics can only be partially out or out only in some places or among some people or communities; there are many factors that can cause this to happen. Sometimes, Autistics may be out in the broader Autistic or disability communities, but may not be out at work or at school for fear of retaliation, harassment, bullying, or direct assault. Some Autistics who've identified as Autistic as adults but who may not have been identified as Autistic as youth or children may be out to their friends but not to their families for fear of misunderstanding, gaslighting, or blatant, flagrant ableism.

It's National Coming Out Day for the queer community, for those who identify as lesbian or gay or bisexual or pansexual or demisexual or polysexual or asexual or trans or genderqueer or intersex or non-binary or androgynous or agender or questioning or queer in general (or any combination of the above). So let's talk about coming out.

We had a fantastic event at Georgetown two nights ago called Undocuqueer: Undoing Borders & Queering the Undocumented Narrative, during which four undocuqueer activists spoke of the intersectionality between the queer and undocumented communities, and the political, legal, cultural, and social ramifications of coming out as queer, undocumented, and undocuqueer. One of the speakers, Julio Salgado, spoke of the awakening  to the plight and experiences of queers that some straight undocumented people had when they began to adopt the language of "coming out" to refer to publicly identifying themselves as undocumented. They began to understand on a deeply emotional level the personal consequences for queers of coming out because they faced many barriers and dangers in identifying publicly as undocumented, analogous barriers in many ways to those faced by the queer community. This personal investment in coming out serves a means of improving understanding of the kind of coming out for members of another marginalized community.

There is a real danger in analogizing that can undo movements, hint of appropriation, and lead down the path of ranking oppressions. At the same time, there is value in drawing analogies in order to better understand, examine, challenge, and change the systems of oppression and hierarchies of privilege that impact not only all people who belong to any of a number of historically marginalized groups but also all people who are privileged by having these unearned advantages in society. The Autistic rights movement that has been emergent for the last two decades draws much from the Deaf community and the broader disability rights movement. The disability civil rights movement draws much from the Black and African American civil rights movement, though both arose around the same time. The queer rights movement draws much from the Black and African American civil rights movement as well as the women's rights movement. The intersectionalities are broad, enormous, and many. They leave a lot of room, a lot of space, much of it unexplored, particularly where three or more identities converge.

In the Autistic community, and in the Autistic rights movement in particular, we use a lot of borrowed language. Is this wrong and appropriative in itself? If the origins of the terms we use are not recognized and understood, and if the histories of the other oppressed groups from which we've borrowed them are not acknowledged as lending these bits of language to us, then yes, it is appropriative. But in the context of a holistic understanding of the societal hierarchies of privilege, power, oppression, and marginalization, the use of these borrowed terms can become empowering and liberating.

I've heard words and phrases like "autdar" (analogous to "gaydar," or the ability that many Autistics have to identify other Autistics, even among strangers), "flaming Autistic" (meaning someone who presents as obviously Autistic), "self-advocacy" (drawn from the community of people with intellectual disabilities), "Autistic" with the capital A (analogous to "Deaf" with the capital D to denote someone or something related to or part of Deaf culture and identity), and "Autistic space" (analogous to "Deaf space," or space specifically designed around the communication and access needs of Autistics). And of course, there are the ever-present "closeted" and "out," and infinite variations thereof. These terms may be borrowed, but they are accurate in their descriptions of the experiences we've had. They are as analogous as they can be—recognizing the similarities in the experiences while respecting the different circumstances and intersections of privilege and power.

Some Autistics will not come out because they have legitimate fears of losing their jobs or credibility at their schools—these fears are founded on the plethora of such incidents that not only occur but that are justified and permitted in the context of an ableist society that dismisses Autistics as incompetent, incapable, eternally naive and infantile, and therefore undeserving of the same opportunities as the neurotypical. To come out is a revolutionary act that challenges this ableist framework, yet we live in societies that perpetuate complicity with ableism, in societies that are not conducive to allowing Autistic culture and Autistic communities to flourish. The resilience that is necessary to exist in a society that frequently dehumanizes and devalues Autistic lives and the Autistic experience often demands coming out, but cannot compel it. And in far too many cases, the rampant ableism of our world suppresses untold numbers of Autistics who are terrified of the consequences of coming out.

We are more than the discursive and rhetorical constructs of autism and ability and disability. To be Autistic is not to be defective or deficient or ill—to be Disabled is not to be less than or inferior or incapable. Autistic culture is more than a passing, perfunctory phrase wrapped in a convenient package. Disability culture is more than an odd turn of phrase, unfamiliar and uncomfortable to those with able-bodied and neurotypical privilege, or to those who have internalized ableism and internalized their oppression. Most disabled people, most Autistic people have never been exposed to Autistic culture or disability culture. Our history is not taught or acknowledged. Our leaders, pioneers, and innovators exist on the margins of mainstream society, politics, and history. We are so commonly erased that many disabled people only learn that our communities are vibrant and widespread after they've already become adults.

To come out is to challenge the cultural norms that tell us we should remain in the closet. That is true whether one comes out as queer or undocumented or disabled—or anything else, for that matter. Not everyone can come out, not yet. But for those who can, each voice, each face, each name, each person, represents whole swaths of people whom society has told do not deserve to have an identity in which they can take pride and find community.

Left to right: James Saucedo, Julia Maddera, Lydia Brown, Sivagami (Shiva) Subbaraman, and M. Ferguson

Five people wearing matching pink short-sleeved t-shirts with big black letters that say "i am." on the front. James is a light-skinned man with short brown hair. Julia is a blonde-haired white woman who is also wearing a rainbow scarf. Lydia (me) is an east asian person with black hair and a blue lanyard around their neck. Shiva is a Desi (South Asian) woman with short-cropped grey hair. M. is a white person with brown hair in a ponytail and sunglasses. In front of the five people is a twenty-eight layer rainbow-colored cake with frosting on top of a table covered in a rainbow pride flag. Behind them is a brick wall covered in various college flyers.