“Autism” the Word, as Glimpsed in the Wild
The autism wars will likely continue, I predict, for some time after the larger culture has rendered its own decision and moved on. Or so has run my thinking, anyway, since I stumbled onto Mom-NOS’s post about autism as adverb, republished here yesterday. In it, she cites fiction writer Lev Grossman using the words “autistically” and “semi-autistically” to describe the behavior of a character who is not in fact presented as being autistic. While I have a couple other examples of this sort of usage “out in the wild,” beyond the confines of autism discussion as such, I’ll grant that I’m extrapolating from a minutely small sample. Still though, once an idea gets a foothold in the imaginations of artists, other opinion-leaders, and their followers, it’s going to thrive or wither on its own merits, and all the pitched battles in our little world here aren’t going to stop it.
Mom-NOS presents Grossman’s usage of the term without judgment, acknowledging her own ambivalence, and asking readers how they feel about it. A thoughtful comments thread follows, on balance mirroring her ambivalence. Much seems to hinge on whether the term is used to denigrate the person or behavior it describes. One commenter brings up Bernard Avishai’s infamous usage, “…the ethical autism Israelis in Jerusalem have suffered from…” as an example of how not to use the word outside of its usual meaning (regardless of one’s thoughts on the Middle East). And for related reasons, two other commenters flat-out do not approve of any off-label usage at all.
My view, as I’ve tried to make clear from numerous different angles here at Shift, is that Grossman and others are not only onto something significant, but are in fact being accurate when they use various forms of the word autism to describe behaviors of those who are not perceived to be autistic. In her own comments, Mom-NOS seems to meet me halfway on this, proposing that Grossman’s usage is metaphoric rather than literal, that he is using “autistically” as a figure of speech—and that this may be a good thing:
Returning the word to the common language might be a way of essentially declaring the normality of autism as a set of traits that belong squarely in the general gene pool not as some exception to be treated as sub human.
I’m sympathetic to this argument, and disagree only in that I would invite her to consider first that if some autism can be recognized as metaphor, then so can the rest of it, and second that this recognition itself—and not its pejorative, denigrative uses—is what we find so unsettling about off-label uses of “autistic.”
To be sure, I object as much as anyone to using the word in denigration. See for instance my open letter to Joel Johnson, a prominent tech writer (and finer-than-average human being) who caught my attention for his pejorative use of the phrase “autistic disdain.” Still and all, we’re all used to fighting (or perpetuating) negative stereotypes about diagnosed autistics, and until we are done with diagnosis, diagnosis (and not autism’s off-label portrayals) will be the central occasion for that struggle—an army of Lev Grossmans and Bernard Avishais isn’t going to change that.
By far the greater cognitive leap here is to the notion that the word autistic can be extended at all to include those who do not qualify for a diagnosis. If this is the case, then it is a sort of camel’s nose under the tent for those wedded to a reified autism maintained behind rigid diagnostic tent-walls. What we’re entertaining here is nothing less than the dissolution of our marriage to that view of autism. So no wonder we’re feeling a little thrown, as if the ground hasn’t moved, but something has shifted, way deep below our feet.
Randall Munroe seems to have been struggling with some of this same unsettledness and ambivalence when he penned this xkcd comic which I wrote about in Randall Munroe Gets It. Since then as it happens, hardly a week goes by on this site without one or more visitors landing here after having typed “randall munroe” and “autistic” into a search box. In our brief email exchange afterward, on the topic of what inspired that particular comic, Munroe wrote,
… it feels strange to me to see the term turned into a broad catch-all dismissal applied derisively to anyone interested in systems and how things work, and it’s probably that frustration that led me to put it in the mouth of the guy ultimately at the butt of the comic. It’s my hope that, as we build this new world of information systems, it’s those system-builders, some autistic and some not, who will have the last laugh.
“Some autistic and some not,” Munroe says, while what they have in common is an interest in “systems and how things work.” My reason for claiming that Randall Munroe “gets it” is that even while he clings to the distinction of being either inside or outside the autism diagnosis tent, his sympathies, priorities, and loyalties lie with that which binds together those on both sides—which in the circles he and his readers run in, is that love of and fascination with systems and how things work.
This is what I’ve been getting at when I’ve asserted and reasserted that:
Whatever else it may be, autism is a way of being in the world. It is a style, a manner of behaving and perceiving, and of being perceived.
There’s a root metaphor here that has to do with … for now, let’s call it fascinations. Autism as a style, as a manner of behaving and perceiving, has to do with being fascinated in ways which are little tempered, mediated, or regulated by social experience (hence the annoyed condescension of the socially-oriented stick figure in Munroe’s webcomic, as well as the cold-sweat terror, panic, and shame of the socially-oriented parents of an autistic child). That may not be the whole of it, but my point is that there is a root metaphor to autism, and that this—not the authori-tay of the DSM’s psychiatrists—is what intuitives and creative sorts outside of the autism-blog ghetto are responding to when they go off-label with their use of the word.
Sometimes, as in the case of say, “Psychology,” uncovering a root metaphor is as simple as peering inside a word’s etymology. Scrape away Psychology’s accreted neuroscience and psycho-pharma for instance and underneath, sure enough, there’s a girl, Psyche, hapless rival to Aphrodite, seeking the path back to her lover; a Beauty pining for her Beast. Other times, the word itself may not be so helpful; as Mom-NOS points out in a comment, there’s no particular reason to believe “autism” was aptly or accurately named in the first place.
Is a word that breaks down etymologically to “self-ism” really so apt to describe people who are so easily drawn into and deeply fascinated by so many external aspects of our world? Or is autism a word which says far more about the society which settled on it; an accusatory complaint which amounts to pointing a finger and shouting, “Selfish!” Maybe this, too, is another reason we find it jarring to see artists and others using “autistic” for their own non-judgmental purposes—because of the inappropriate cultural judgment inherent within the word, whenever and wherever it is used.
related: Should We Label Characters?
related: Autism as Adverb
Mark Stairwalt on 09/23/10 in featured, Language | 7 Comments | Read More
Comments (7)
perhaps we should just turn a “blind eye” to the escape of the term into the wild.
I hope that did not offend any one eyed people
Heh.
Exactly. A few more decades of benign neglect may be just what’s needed here.
Mark,
My difficulty with using autism as an adverb or as a metaphor has to do with my resistance to accepting the surface-based non-autist’s understanding of autism as a legitimate expression of what autism is. Autism is not, after all, merely a heightened fascination; that’s an externalized view of what autism means to those who are not, after all, autistic.
Not only is the medical model of autism much more complicated than this, but the experience of autism is even more complicated than the medical model-which already concentrates on external, observable behaviors at the exclusion of how autism is experienced by the individual with an autism diagnosis.
Using grammatical versions of the word “autism” to express fascination or body movements reinforces stereotypes, which is inherently negative whether it does so in an negative manner or not.
Autistics experience a range of traits and states of being. Not all autistics rock back and forth as per the stereotype. And autistics experience a frustrating inability to concentrate as well as concentrating on one thing at the exclusion of other things. Reinforcing the stereotype excludes the variety inherent in autistic experience and, as a product thereof, de-humanizes those who experience that variety.
Stephanie,
Thanks for taking time to comment, and for granting me permission to post your recent piece without your yet being familiar with Shift. I apologize if I left you feeling as if you were being set up to be a punching bag, though I can see how you might’ve done so.
No one should accept that superficial understandings of autism are a good thing, or even acceptable substitutes for deeper ones. And given your premise — which seems to be that autism is wholly beyond the ken of anyone not so diagnosed — your conclusions follow clearly enough. If we do start from the premise, though, that the experience of being autistic is a discrete phenomenon, a spectrum which *ends* at the edge of a wide, abrupt, and colorless gap rather than shading into the experience of the larger population, then it is we who have cut off the autistic population from the possibility of being understood and accepted as human — that’s not to be laid at the feet of anybody else’s shallow understanding, or the inscrutability of autism. It is we who do that, by accepting that premise in the first place.
For all that though, I do think it’s extremely important, as you argue in the essay reposted here last Friday (Should We Label Characters?) to have literature which portrays autistic people without labeling them so. It’s been years since I read A Wrinkle in Time, but I do remember being comforted by the very fact of Meg Murry, no label or explanation needed. I wanted your essay on this site not to set it up in opposition to what’s already been said, but to expand the picture beyond a single-answer mindset. There is no call to approach this question as if it were an either/or matter. The “correct” answer, I suggest, is *both*.
We do, I believe, need autistic behavior to be named and identified when and where it occurs in characters who themselves may or may not identify as autistic, and we ALSO need characters who simply play their roles in works of literature while diplaying all manner of autistic characteristics which are nonetheless never identified as such. These approaches complement rather than contradict one another and to set them at odds, it seems to me, is simply to act as self-starters in the old divide-and-conquer game which has long plagued autistic people.
Is it going to make us unsettled, seeing both approaches in play at once? Most likely yes. We are not used to saying “Both, please,” when the question is “Which one?” The world as handed to us comes in binary form, either/or, right down to the 0’s and 1’s behind the screens we’re reading on. Is autism, for instance, a disability … or is it not a disability? Autism is indeed as you say in another comment, a “complex and holistic state of being.” Somewhere within that insight, I think you’ll agree, there is room for autism being both a disability and not-a-disability. The fact that some people are unsettled by even that much ambiguity doesn’t mean we should stop confronting them with it, or that we should discourage writers from coming to grips with it explicitly, or deny them the benefit of the doubt, just because their understanding may seem inadequate.
I don’t know if you clicked through to read Randall Munroe’s comic, but his whole point was to lampoon the person who in fact had used the word autistic to reinforce a stereotype, only to have autism as not-a-disability come back to have the last laugh. When I tried to define what it was Munroe was responding to, I twice qualified myself to make clear I was not reducing autism to fascination; a root metaphor for autism is something I’ve been pondering with little progress for a long time — but that doesn’t mean it doesn’t exist, or cannot be rich and subtle enough for the task. What I — and I think Munroe — are trying to point toward is, again, very much your sense of autism as a “complex and holistic state of being.”
I’m still just not convinced that it’s a zero-sum affair, that either approach takes away from the other. Autism just needs more attention, period. As the cure for the ills of democracy is more democracy, the cure for the ills of autism is more autism, more attention paid.
Though you know, like the river that carves the canyon, I can see your approach — of writing autistic characters without identifying them — being more effective in the long run if not in the short.
Which is why I asked if I could republish it. Thanks again.
Mark,
You’re welcome on both accounts and I did/do not feel at all like a punching bag.
“And given your premise — which seems to be that autism is wholly beyond the ken of anyone not so diagnosed — your conclusions follow clearly enough.”
That is not my premise-at least, it was not the premise I intended. As someone who has no diagnosis and would likely not qualify for a diagnosis if I were to seek one, I don’t feel that autism is un-understandable to those who do not have autism. I do, however, feel that understanding autism requires more effort than most people not intimately involved (as a parent, sibling, friend, or as oneself) with an autistic individual (and preferably multiple individuals on different “spots” on the spectrum) is willing to put forth. My point was not to suggest that autism is too foreign to be understood by non-autistics, but that those who would focus exclusively on a few external characteristics and call that autistic are misrepresenting what autism is.
“…the experience of being autistic is a discrete phenomenon, a spectrum which *ends* at the edge of a wide, abrupt, and colorless gap rather than shading into the experience of the larger population…”
As someone who considers herself to “land” in the space between neurotypical and autism on the human spectrum, that is not what I would suggest at all. From my interactions, I consider myself too neurotypical to be autistic and too autistic to be neurotypical. But what makes me feel autistic has little to do with body movements (I don’t rock, and my three sons with autism diagnoses rarely rock) and other stereotypes that tend to be purported by neurotypical by-standers. Instead, what I most identify with is the internal struggles express by many autistic/Asperger’s adults.
“The “correct” answer, I suggest, is *both*.”
I agree that autistic individuals and the traits attributed to those individuals need to be shared with the wider human spectrum in an open, honest manner. It’s an important step in the right direction. But, I would caution as a writer and an advocate, that the ideal way to do this would be to expand beyond the stereotypes and to assert a wider, more inclusive view of what autism is as we generalize it.
“Somewhere within that insight, I think you’ll agree, there is room for autism being both a disability and not-a-disability.”
I do agree. I also believe our cultural obsession with duality is detrimental to an honest expression of autism in a public forum. People want to hear it’s good/bad, right/wrong, and so forth. Whereas, truth lies in the middle ground.
I also think, in retrospect, that I got stuck in the “Autism as Adverb” discussion and carried it over to this post without considering Munroe’s work independently. For that, I very much apologize.
I’m not sure that we agree, but I’m not sure what we disagree about either. I do agree that it’s not a zero-sum affair. But I am adamantly against stereotypes. I am against stereotypes in general. And I also see stereotypes as something that prevented me from getting my boys the help they needed to learn on their own developmental trajectories. And I still face those stereotypes.
I have zero tolerance for those who choose to reinforce those stereotypes without, at the very least, adding something more to soften the blow, as it were. I now see what Munroe did as being on par with what I do want to see, but Grossman’s usage is not. Grossman’s intentions may have been good, but I think your choice of “clunky” as a description fits more than just the word choice itself.
Fair enough. Glad you’re around, Stephanie.
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