Identity Politics and Neurodiversity

We’ve had some discussion here on Shift Journal recently about the extent to which characters and behaviors should be described as autistic.  Mark Stairwalt speculates that when people feel uncomfortable with “off-label” uses of the word, it’s because their assumptions about the validity of diagnosis and the medical model have been subtly undermined.  I don’t disagree with that observation; but I think it’s likely that many people’s discomfort runs even deeper, having as its source one of the central questions of the modern age: How should minority groups relate to the society around them?

When I read Ari Ne’eman’s interview on with Steve Silberman about neurodiversity and the autistic community (which was discussed last week here on Shift), I noted that the first comment came from a parent who made clear that she found the concept of autistic identity very disturbing.

“I take exception,” she declared, to the “idea that my children’s world should revolve around the fact that they are autistic.  They are many things and their autism is just one aspect of their personalities.”

Upon first reading this comment, I thought (as did commenter # 2) that perhaps she had misunderstood something in the article.  After all, the goals of the neurodiversity movement, as clearly set forth in the interview, have to do with self-determination and acceptance of the legitimacy of neurological differences.  Taking that approach to its logical conclusion would result in less, rather than more, attention being paid to autism as it became accepted and routinely accommodated like other forms of diversity.

But then I realized she was objecting to the existence of the autistic community on the ground that it encourages people to identify as autistic more strongly than they might otherwise have done.  She wasn’t suggesting that the neurodiversity movement had caused mainstream society to put too much emphasis on neurological differences; rather, she was bothered by the idea that her children might start wearing autistic pride T-shirts or taking part in autistic community events.

Of course, it’s not just parents of kids on the spectrum who have such worries.  There are many parents who might, for instance, accept the fact that their son is gay—as long as the word is spoken only in hushed tones and behind closed doors—but who would be thoroughly scandalized if their son ever decided to march in a gay pride parade.

There’s an inevitable tension between identity politics and the matter-of-fact acceptance of diversity that is its ultimate goal.  Identity politics encourages people to work together as a distinct group to improve the social status of the group; it requires them to put themselves forward in the political arena as a separate constituency focused on a particular agenda; and it promotes a strong sense of community by means of pride parades and other cultural events.  These methods have been shown to be very effective in getting the attention of politicians, journalists, and business leaders, putting pressure on them to make meaningful changes.  But by its very nature, identity politics also reinforces the social distinctions that it challenges.

Parents generally want kids to fit in and be accepted by their peers.  If there is something about our kids that sets them apart from others, we worry about what it might mean for their future.  Whether we’re talking about autism, homosexuality, or anything else that might be seen as socially deviant, parents tend to get upset.  And when advocates tell young people to be proud of such differences, they often end up taking the brunt of the parents’ emotional reactions.  It’s a common dynamic that occurs in many contexts.  Although some parents will gladly march right next to their children in pride parades and wave banners calling for acceptance, others still have a lot of unresolved issues to work through.

As a minority group achieves social progress by way of identity politics, the center of the political discourse shifts toward acknowledging the legitimacy of its perspective (a process described in the article Autism’s Overton Window by Mark Stairwalt), and its advocates then start to be perceived as mainstream civil rights organizations, rather than as scary troublemaking radicals.  But at the same time, the community’s members become less passionate about identifying with the group because they no longer feel that this aspect of their identity is under attack.

To put it another way—we’ll know that the neurodiversity movement has succeeded when our children don’t see a need to wear autistic pride T-shirts because they’ve never been made to feel inferior in the first place.

related :  Autism as Adverb

related:  “Autism” the Word, as Glimpsed in the Wild

related:  Should We Label Characters?

on 10/13/10 in featured, Politics | 10 Comments | Read More

Comments (10)


  1. KWombles says:

    Great article, Gwen, and a logical conclusion; when we are all seen as individuals, all of value and worth, with our uniqueness appreciated, then there will be no need to emphasize one part of our identity over the other.

  2. Clay says:

    Good analogy about parents merely accepting a fact, but not wanting their offspring to march in Gay Pride parades.

    As loser-to-be NY Gubernatorial candidate Carl Paladino pointed out recently, his opponent Andrew Cuomo attended a Gay Pride demonstration with his two daughters. Mr Paladino said that this would “only encourage them, brainwash them into thinking the homosexual lifestyle was acceptable or could be successful”. Maybe not an exact quote, but he’s really a homophobe.

    I’m still going to be wearing my autism T-shirts.

  3. Gwen, I really love this article. I’m very interested in the whole question of forming a positive identity as a member of a stigmatized group. You’ve done a great job of parsing some of the issues involved.

    As an aside: I think that the whole issue of “off-label” uses of words goes directly to the question of identity. When a non-autistic person says that a person is “rocking autistically,” I have the same response as if a non-Jewish person had said that a person is “rocking Jewishly.” In both cases, the use of the adverb feels appropriative, because someone from the outside cannot know what rocking autistically/Jewishly is really about. To them, it’s a behavior, and nothing more, and the use of the word reflects that. To us, it’s not really a behavior at all. It’s part and parcel of how we engage the world with our minds, hearts, souls, and senses.

  4. Mark Stairwalt says:

    Re: off-label uses of the word autistic, I’m no more for it being used appropriatively by others than are you, Rachel. My point is that WE should be appropriative about it, especially in regard to fictional characters, in recognition of the fact that autism exists in so many unsuspected places and presents in so many unrecognized forms.

    If a writer writes an autistic character poorly, we should make that into their problem and hold them accountable for having done a disservice to that character, rather than making it our problem by cringing and contending that their character “isn’t really autisitic.” As fictional characters after all (as opposed to autonomous imaginal beings — see below) they are 100% social construct, which means meat-and-blood autistics can have a substantial hand in creating them, even after a given writer has sent them out into the world (for how one might be appropriative about an off-label, non-fiction use of “autistic,” see Open Letter to Joel Johnson).

    The way I see it, we can either welcome their presence by stepping up to that challenge, or we can play a losing game of whack-a-mole, one that has an uncomfortable resemblance to the way diagnosed autistics have a way of denying the identity, reality, and experience of self- or undiagnosed autistics.

    You may or may not agree with that, but I want to be clear I do not advocate allowing writers to have their way willy-nilly with the word autism, just to see it get wider exposure. I simply think the best and maybe only way to stop that from happening is for autistic people to embrace and involve ourselves in off-label uses — to appropriate them as expansions of our empire, rather than regard them as encroachments upon it. We can either frame the phonomenon to our advantage, or we can complain about having it framed for us.

    I do get your analogy to Jewishness, but there is not after all a large population of people who are Jewish but don’t know it, nor is there a growing cohort of writers into whose imaginations they have begun to seep. I say we recognize and honor their autonomy, their apparent intention to seep into literature. I say we do what we can to bring them intact into our world, rather than try to repress them simply because writers as a rule are not well-versed in autism issues.

    The “off-label” analogy at any rate comes from the aptly chosen, effective use of pharmaceuticals for purposes for which they do not happen to be FDA-approved. It’s not the same as random pill-popping.

  5. Mark, I agree that we have to hold writers accountable for the way they represent us-and saying that a non-autistic character is rocking autistically is not the right way to represent us. It uses a stereotype and, even if it’s only done for a moment, it has impact. I’m not saying that we should complain and say “That’s not really autistic.” I think we should engage people when it happens and say, “That *is* autistic *when* an autistic person is doing it, just as rocking in prayer is Jewish when a Jewish person is doing it. Otherwise, it’s just rocking.”

    In other words, we are in vehement agreement. I think. :-)

    And, by the way, there are a great number of people with Jewish forebears who don’t know it-14% of the population of Spain, for instance, who are descended from Sephardim who were expelled in 1492. I don’t see any evidence that shallow representations of Jewish culture by people who have never lived in the culture have ever had any impact on getting people to embrace their Jewish heritage or their Jewish neighbors. What’s had an impact (especially in post-Holocaust Europe) is that society as a whole has woken up and said, “Wow, we almost lost these people from our midst. Maybe they have something to tell us.”

  6. Mark Stairwalt says:

    Yeah, not the first or least enjoyable time we have vehemently agreed, either. :-)

    I should’ve known better about the unaware Jewish population — sorry — but I think my point stands. Bear with me and let me agree some more:

    I don’t understand how you can speak as if there is some sort of objective truth as to whether a fictional character “is” or “is not” autistic. I am as boggled as I might be if my wife woke up mad at me because she dreamed I cheated on her.

    Tongue firmly in cheek, I ask you: you do understand that these are stories that writers write, right, and that they come from imagination, a notoriously indefinite, malleable place?

    Even so though, the imagination is often a source of breaking news. If society is beginning to wake up, thanks to non-fiction stories such as yours, to the fact that the autistic walk among us unrecognized, then this is going to impact the work of artists in ways they don’t fully understand, and in ways which at first may make little to no sense

    When that happens, autistics along with their larger community are likely to take it personally. I’m suggesting that what’s happening with both clumsy and elegant attempts to reference autism by writers who don’t generally write about it has more to do with society than it does with autism or autistics, and that it’s both far larger and far less personal than it seems.

    It’s kind of a psychological truism that when something is right at the edge of consciousness, just before it emerges into view, it appears as a double or a twin, as having a dual, sometimes paradoxical nature. The neurodiversity movement then may be as much symptom of an emergence as it is a cause, representing as it does a second take on autism, one which makes visible the conundrum-that-will-not-die: “disability-or-not-a-disability?”

    So there’s your dual nature right there, and if there’s anything to all this happy mystic hoo-ha, artists of all stripes who’ve never before given it a second thought might be expected to have autism on the brain these days, sending the word’s off-label usage skyward.

    Which is to say, all appearances to the contrary, writers are not choosing to work autism into their writing; it’s just part of their job, as specialists in the imagination (and everyone who writes, fiction or otherwise, is one to some extent) to deliver breaking news from ye olde unconscious hive mind. And as a first rough draft of history, it’s bound to leave a bit to be desired.

    At any rate though, that collective dimension makes what’s happening bigger than our opinions or feelings about it, even as autistic people. It’s not about us, any more than it’s about those who suddenly find the word autistic turning up in their writing.

    What it’s about is that conundrum-that-would-not-die that is autism resolving its duality and appearing whole for the first time, maybe, since we acquired speech. (It’s moments like this when I really miss Andrew being here.)

    So I respectfully note your excellent high-horse zinger about shallow expressions of Jewish culture never bringing anyone closer to the faith or to the faithful, but what I’m talking about here is not any sort of public relations or evangelism; it’s about autism itself as an emerging reality, vastly more encompassing than any group’s agenda for any other group, an emerging reality that has all of us dancing like puppets, playing parts we only think we’ve chosen.

    Sure then, I cringe when I read that an experienced, published author has used a gawdawful clunky construction like “autistically.” But I also consider that there may be forces at play in that author’s work — or another’s, or another’s — of which even they are unaware, and that the odd incongruity, the broken twig, the displaced pebble in the midst of an otherwise picture-perfect tableau can be just the sign that tells you what has happened there. Something passed this way and left that, right here. Huh.

    The story of your life, Rachel, is that for a good entire half-century you were “not” autistic. And then rather suddenly you were. So you of all people I would think would be the last to pronounce another character of any sort — without at least a 50-year observation period — to be “not autistic.”

    Clay and I went to some effort earlier this year to point up the high prevalence of false, non-autistic personae employed by autistics. So many of us have escaped only by sheer luck from wearing those personae to the grave. Countless others have and will pass their entire lives while, well, passing.

    Surely there are analogs among fictional characters, unsuspected even by their authors? Who are any of us to say? Who are any of us to stereotype any of them as irredeemably neurotypical? Especially when there they are, for perhaps the one moment in their life story when they are being themselves, “rocking autistically.”

    Why not read that moment as a painfully awkward instance of that character trying to clue in his author — and us — about his own true nature?

    Granted, I’ve not read the book, don’t know the character, and arguably have no business writing about any of it. But from where I sit, no one has yet made a convicing case on this. And yes, I have another comment somewhere around here in which I vote that we ban “autistically” from the dictionary — but that’s assuming the larger picture here is all about us and our personal preferences.

    And that’s not what I really think. Not tonight, anyway.

  7. Mark, I agree that there are lots and lots of shades of grey about where the autism spectrum fades into what the society sees as “normal,” and I’m certainly not arguing about whether a fictional character is actually autistic. My point is that autism is a social and cultural construct, so that when people who do not self identify as being within that construct point at someone (whether fictional or not) as doing anything “autistically,” it has a cultural and social impact that is not altogether positive. It reduces us to stigmatized stereotypes, and it’s bound to be imbued with the perspective of the “normal” majority, to one degree or another. Having self-identified as “normal” for 50 years, I know how judgmentally and stereotypically I used to view autistic people, and how wrong I was, despite all my best efforts.

    Whether the author’s neurology has anything in common with autism or not really doesn’t concern me here. It’s not that I don’t care. I do. It’s just a question of emphasis. I’m much more interested about how people construct what autism looks like and feels like, because that has a tremendous impact on autistic people who aren’t fictional characters. If someone self identifies as “normal” and then creates a character identified as “autistic,” there’s a power relationship that can’t be ignored.

    Frankly, I think the only solution is to stop arguing with how bad the characterizations are and start writing our own literature.

    Regarding the analogy of Jewish heritage and Jewish people, your using words like “faith, “faithful” and “evangelism” to describe what I’m trying to say is an excellent example of the problem that concerns me. Those three words are decidedly Christian, and they are not words that Jews ordinarily use to describe ourselves or what we do. I was talking about cultural heritage, not belief or religion. Being Jewish can be about religion, culture, or both, depending on how a person self identifies, and when I talk about ancestors, I’m talking about culture. I couldn’t care less whether people in Spain with Sephardic ancestors embrace Judaism or get other people to. They’ve very likely been Spanish Catholics for centuries and I have no interest in undoing that.

    My point was that knowing that they have Jewish blood in them hasn’t caused any sort of reassessment of what it means to be Spanish, Catholic, or Jewish in Spain-at least, not as far as I can see. It’s not that 14% of Spaniards aren’t partly Jewish. They are. It’s that they self identify with the socially constructed majority, and that determines the fate of the minority like nothing else. That’s what I keep my eye on.

    Your assessment isn’t wrong. It’s just not the one that I emphasize. Coming from Jewish culture, I’m perfectly comfortable with that. Our whole tradition is about unity in diversity-even though we do a somewhat less than stellar job putting that into action at all times. :-)

  8. Mark Stairwalt says:

    Good talk. Guilty as charged on the Christianist language. I agree that autistic literature is something whose time is overdue. Thanks for engaging; glad you’re around.

  9. Stephanie says:


    I am not familiar with the comment cited, but I am familiar with the sentiment. Though, in my personal experience, there are sets of people who share that sentiment for different reasons. One (perhaps the largest) is the sub-set that still seem autism as something shameful-they can accept it in their child, but don’t want their child to really be identified as such.

    One way I’ve encountered parents of this nature is in how I don’t encounter them. Service providers have told me that their policy to not disclose the identities of the kiddos they work with because some parents keep their child’s autism as a “dirty little secret.” (Not a direct quote from the providers.) So, for example, I can know that the lead psychologist also knows my sister-in-law on a professional level, but the lead psychologist cannot acknowledge this to my sister-in-law.

    On the other hand, there is resistance to this on a different level. Autism is pervasive, but it is not a person’s identity. A person can identify themselves as autistic; but they are much, much more than that. There are people who, with some legitimacy, believe that putting any one facet of one’s personhood as a prominent part of one’s identity belittles the person as a whole.

    An example of this is when I identify myself too strongly as a writer, I fail to live up to the work/life balance I consider ideal. Since “writer” is what I am, I can subconsciously justify “mother,” “wife,” and “friend” taking a backseat to “writer.”

    A similar thing can happen with non-work related affiliations. Some of the neurologically diverse individuals I’ve encountered are so intuned with being “autists” that neurotypicals are the subject of scorn and derision. The same can and does happen in other identity-heavy sub-groups. At it’s most intense, it leads to hate.

    So, Gwen, while you make excellent points (and I don’t dispute those points as stated) there is the potential of too much of a good thing. Nobody should be too ashamed to identify themselves as autistic; there is nothing wrong with being autistic or taking pride in that facet of one’s personhood. But…we must also remember that pride cometh before the fall. Being autistic shouldn’t be the only thing a person is; nor should being proud of being autistic become scorn, pity or contempt for those who are not.

  10. mthr says:

    I take exception to the whole idea of scientifically fashioned identities, subcultures, communities, etc. What does it say about a culture when people start constructing personal narratives on the basis of the medical sciences? I think it tells volumes about how shallow we have become as a culture. It tells me that we live in the culture of the quick fix and the push-button solution. Ultimately it reveals that we are becoming increasingly incapable of forming complex meanings and personal narratives.

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