Despite the title of this essay, I am a person. I am just a person.
I have struggled to put this piece together, in so many ways. One of those struggles was figuring out how to start.
Like every other human being I am, as a creature, as an animal, a product of evolution. As a subject, a roving knot of consciousness, I am a product of my culture. As a person in the world I am a product of my lived experience and my relationships.
I am not a changeling. I am not an alien. I am also not a mysterious relic from the past or a robot or some kind of eccentric genius. I do not exist for you to project meaning onto me. I am not here to be an object of anxiety, or wonder, or inspiration. Let’s start there.
I am autistic. I was diagnosed with Asperger syndrome when I was 20. In 2013, in the DSM-5, Asperger syndrome was merged with autism, subsumed under the diagnostic category “autism spectrum disorder.” Like many other people diagnosed with Asperger syndrome, however, I identified simply as autistic long before the labels were officially consolidated.
The general shape of my story, leading up to the diagnosis, is the same as it is for many people who were diagnosed “late.” I was a strange and lonely child. I was a “little professor,” intense and articulate, and those very qualities staved off any suspicion that I might have a developmental disability. In college, however, the differences that mark me as autistic got in the way of my life too much to be written off as “quirks” or “eccentricities.” I wondered if there might be a name for these differences, and I found one.
The dominant understanding of autism, at least until very recently, has been that it is a serious neurobehavioral disorder. Despite the “neuro-” prefix, which implies some relationship to the brain as a physical organ, there are no physiological features that are uniquely and consistently associated with autism. Although there is a large and growing body of medical research on autistic neurology, autism cannot be and is not diagnosed through a brain scan or any other kind of physical test. Autism is diagnosed by observing behavior. Over the years it has, in popular discourse, become a kind of catch-all category for almost any kind of atypical behavior. Anyone who deviates from the bounds of “normal” behavior might be suspected of being “on the spectrum.”
In the popular imagination, autism is and has been a source of both horror and wonder. Popular portrayals of autism incorporate but also freely embellish upon clinical understandings of the condition. Autism is often portrayed as a child-snatching plague. At its most frightening, it will steal your children and seal them away in “their own world.” It will warp them such that you’ll look into their eyes and see nothing there. Autistic people may outwardly appear human but our minds are so alien and inscrutable that they might as well be blank.
And yet, at the same time, we are imbued with strange and wonderful gifts. The narrative of autism as a “gift” or advantage is not novel, and it is not at odds with the construction of autism as disease, deviance, or deficit. In one of the chapters of Representing Autism (2008), Stuart Murray provides an in-depth analysis of the figure that has long embodied this concept of autism-as-advantage: the autistic savant. Autism and savantism are so closely linked in the popular imagination that Murray muses upfront “whether it is possible to be a savant without also having autism, or equally whether it might be supposed that all those who are autistic possess savant abilities.” Despite her gifts, the savant is still so alien that she may as well possess no interiority at all. Her abilities have meaning and purpose only so far as they benefit non-autistic people. The “advantage” that comes with autism is not the autist’s own, but that of (non-autistic) humanity on the whole.
I know that we would all like to think that we have moved beyond these archetypes. Particularly in light of neurodiversity’s rise to mainstream influence, we hope that this shift in popular discourse heralds a more humane and welcoming society. But as long as the default subject in society is assumed to be non-autistic, and as long as autism persists as a category of deviation from that norm, these dehumanizing narratives will also endure.
Before I go on, I want to make something absolutely clear: I do believe that non-autistic people writing and speaking about autism usually have genuinely good intentions. Steve Silberman in particular seems like an earnest and thoughtful person. I trust that he really does want to support autistic people and to see the world do right by us. I know that non-autistic clinicians, professionals, and especially parents and guardians care deeply about their autistic clients, students, and children. I am not interested in assuming or promoting an adversarial relationship between autists and non-autistic caregivers and supporters. That would be in bad faith, and I fear that fostering such conflict would be especially harmful to the most vulnerable members of the autistic population.
I also do not want any fellow autistic people to feel guilty about finding value in Silberman’s work or in any similar works on neurodiversity by non-autistic authors. I am here to tease out, describe, and engage with a very stubborn and deep-seated narrative about autistic people–one that finds its way into even the most thorough and sensitive works. My gripes and quibbles do not mean that these works are bad or worthless. And my issue is ultimately not with Silberman or his book in particular, but with overarching trends or tropes in the discourse around autism.
I wanted to clarify all of that because, truthfully, I do not like NeuroTribes. It didn’t make me feel comforted or understood. I still feel dehumanized and exploited, and all the more frustrated because the author explicitly and so very, very earnestly intended otherwise.
Silberman’s book has been met with universal praise. It traces the history of autism from the work of Hans Asperger and Leo Kanner to the present day, exhaustively covering discursive trends from refrigerator mothers to the vaccine controversy to the neurodiversity movement. Silberman has been well-known for writing on autism since the publication of his now seminal 2001 Wired article “The Geek Syndrome.” NeuroTribes is the long-awaited culmination of his fascination with autism and autistic people. And I think, with that last sentence, that I have uncovered the root of my own discomfort and feelings of alienation. I can never quite be a person as long as I am an object of fascination.
I gather from his writing in general that Silberman is aware of how the alien and savant archetypes are deployed to the detriment of autistic people. As quoted in a 2012 io9 article, for example, he acknowledges how autistic characters in popular media are reduced to narrative devices. I do not think, however, that Silberman avoids perpetuating such othering narratives in NeuroTribes. No matter how many autistic people he has interviewed, Silberman cannot decenter the non-autistic gaze and perspective.
There is a whole chapter of the book devoted to Rain Man, the ur-text of autism in popular media. In the film, the (in)famous autistic savant character is a fascinatingly strange spectacle. He is less a person than simply a narrative device that drives the non-autistic protagonist’s arc. Silberman is strangely uncritical of the film. He credits it with jettisoning autism into the public (i.e. non-autistic) consciousness. Certainly, at the most basic level, that is an accurate assessment. But visibility is not the same thing as representation. Hypervisibility is a damaging phenomenon. Rain Man made autistic people hypervisible to the public eye, and its legacy is that we are still interpreted and interpellated through stereotypes and spectacle. Becoming an object of popular fascination is the opposite of humanizing.
Silberman also seems generally fond of that tired, inescapable analogy of autistic people in “a neurotypical world” as aliens navigating a strange planet. In a 2012 interview for Wired, he prompts the reader to, “Imagine Mr. Spock on Star Trek arching a Vulcan eyebrow in the face of McCoy’s ‘highly illogical’ behavior,” and claims that this analogy is “a perfect visual representation of how the follies of neurotypical society look to many autistic adults.” The alien comparison comes up in NeuroTribes as well, albeit sometimes in the mouths of autistic people themselves. Silberman does specifically liken us to Spock again, a couple of times.
On a certain level, I get it. Autistic people have sometimes analogized their own experience of, well, alienation as feeling like a lonely extraterrestrial. And non-autistic people love that, they eat it up. But here’s the thing: If someone tells you that their experience around you makes them feel like an alien or a monster or otherwise less than human, your impulse should be to reflect on and change your attitude and behavior. Instead of uncritically parroting the sentiment that autistic people are basically like aliens, you need to regard and treat us like fellow human beings.
NeuroTribes doesn’t quite succeed in conveying that need for deep attitudinal change based on the understanding that autistic people are human. The book’s ultimate argument or thesis relies on the narrative of autism as a wondrous, mysterious gift and on the construction of autistic people as a fascinating other. Autism “is a strange gift from our deep past, passed down through millions of years of evolution,” Silberman writes in the concluding chapter. Autism is still an “atypical” mode of being, albeit one that should be accommodated because of its potential to benefit the general population (that is, to benefit non-autistic people).
Again, I am not saying that NeuroTribes is a completely bad or worthless text. For readers who may be new to the history and concepts presented in it, and for autistic readers looking for affirmation of their experiences, I am sure that the book has value. It does represent an attitudinal shift away from exterminatory panic. Silberman does argue that autism is not a problem in itself, but that a lack of access to resources and support leaves many autistic people and their families in crisis. He lists potential accommodations that might be introduced to public and communal spaces to make those spaces more welcoming to autistic people.
Then again, what Silberman really does is recount a history of the autism rights movement, and then he relays autistic advocates’ own arguments and propositions. And he — a non-autistic commentator — is rewarded with profit and acclaim for rehashing autists’ work.
I believe that part of what is harmful or troubling about even this book is also an inescapable feature of any and every text written about autistic people by a non-autistic person. Such works are emblematic of a longstanding, infuriating paradigm in which non-autistic authors and advocates are applauded for capitalizing on the work and experiences of autistic people. It is telling that in the language of the autism rights movement–and of disability rights more broadly–we have to use the term “self-advocate.” LGB people, for example, do not need to call ourselves “self-advocates” when we identify ourselves as gay rights activists. It would be recognized as redundant. Straight people need clarify that they are “allies” when they align themselves with our cause. Autistic people don’t get to have allies. Non-autistic people are centered as the advocates and we’re the ones who need to clarify who we are and justify our presence.
The mantra of “nothing about us without us” has set the bar far too low. It is not enough to be merely present. Despite the lip-service suddenly being paid to neurodiversity, autistic people are still, overwhelmingly, excluded from the mainstream of our own movement. We might be physically present, granted a “seat at the table” in the most literal sense, but we are not in charge. All mainstream discourse and activity around autism–clinical, academic, and political–is dominated by people who are not autistic. We might be consulted with but we are never deferred to. We are invited along as guests. Being guests, we must behave ourselves. Autistic advocates have worked tirelessly for decades to connect with each other, to carve out spaces for ourselves, and to make ourselves heard. Non-autistic people are still the gatekeepers. They control the institutions that govern our lives. If they don’t like what we have to say, we are still easily dismissed and ignored.
That is what autism is: A subordinate social position.
That one narrative, that deep-seated, inescapable narrative that is my ultimate bane and that I am desperate to describe and deconstruct is simply this: that autism is a fixed and natural state. That it is wired into my brain and coded into my DNA. That I would be inescapably deviant, or disabled, or otherwise different from “the norm” regardless of my culture or social context.
We–humans–make meaning through narrative. The whole world, as we apprehend it, is made of stories. Autism itself is one of those stories. Or perhaps it is better described as a genre of stories.
Cognitive and behavioral differences are very real. But what those differences mean depends on their cultural and historical context. Autism does not reside a priori within the human body. It is not immutably, transhistorically and transculturally, inscribed by nature or by God onto particular behaviors or modes of thought. Autism is the meaning that we read onto certain patterns of behavior. It is a “nominal category,” as Majia Holmer Nadesan puts it in Constructing Autism (2005). It has no fixed essence or substance except as a name for behavioral deviance.
We are different, but only insofar as every human is different from every other human. The behavioral attributes that have been named “autism” are just that: a set of traits picked out of a sea–not a tidy spectrum but a teeming sea–of difference and variation. Autism is a post-modern phenomenon, but not in the sense of being some kind of punishment for medical advancements or pollution or TV or junk food or feminism. It is a projection of our collective anxieties, a product of ever more restrictive systems of surveillance and taxonomy.
As long as non-autistic people believe that autists are a coherent category of people who are inherently and irreconcilably different from them–a different “tribe”–we will always be subordinate. The idea of normal, typical, default humanity assumes a non-autistic subject. The autist is the inscrutable other, the object of simultaneous revulsion and wonder. This state of abject otherness is why autism is constructed as both a curse and a gift.
Again, the concurrent narratives of deficit and advantage are not at odds but are complementary. And they have material consequences. If a population is constructed as aberrant and burdensome, then they must assert their worth in spite of that. If a population is constructed as wondrous and gifted, then they must meet that expectation or be deemed aberrant and burdensome. The deficit/advantage paradigm is not a dipole but an ouroboros.
On both sides of the coin, by alarmists pushing exterminatory rhetoric and by well-intentioned would-be proponents of neurodiversity, autists are constructed as cyborgs. We are understood as either less than fully human or as more than merely human. Not quite people, in any case. We are always part animal, part alien, part void, or part machine–always at least a little bit monstrous.
Monsters, incidentally, are what some would term my “special interest.” For my whole life I have had a passionate affinity for the monstrous. This affinity is what first drew me to cultural analysis and the social sciences. It led me to Donna Haraway’s famous argument that a discursive landscape comprised of oppositional dualisms has made cyborgs of us all.
I am 27 now. Seven years doesn’t seem like such a long time but I feel like a completely different person from who I was when I was 20, or when I was 23, or who I was last year. Having a diagnosis, being able to say that I fall into a particular category of deviance, has been a key to accessing the supports that I needed to grow and thrive. At this point in my life I’ve finally thought to ask: Why? Why don’t we support and care for every person as a matter of course?
And why should helping someone survive and thrive need to be justified by their utility or productive potential? In all the mainstream rhetoric about the potential benefits of embracing autism as “difference,” the inconvenient extremes of autistic difference are glossed over or brushed aside. Silberman’s book doesn’t totally shrug off the existence of nonverbal and “low-functioning” autistic people, but it does force them into a narrative of “potential.” On the findings of Leo Kanner’s work, Silberman writes, “Even ‘low-functioning’ children could grow up to become ‘high-functioning’ adults, but only if they managed to stay out of an institution and were given a chance to develop their innate gifts.”
It is absolutely true that a person’s behavior and level of functioning can change, even dramatically, and that some people need long-term, intensive intervention to experience that change. But what about those people who will never grow out of the traits for which they have been labeled “low-functioning?” Why accept any paradigm in which they are constructed as unfortunates, as failures of some kind if they never realize their “gifts?”
What happens when accommodating someone doesn’t provide a means to extract labor from them? Doesn’t a person deserve all the support and care that they need just on the basis of being alive in the world?
For me, neurodiversity has been a gateway to adopting more radical politics overall. I came to anti-capitalism through neurodiversity. I have acquired a broader political imagination and a greater sense of urgency through neurodiversity. If there is any possibility of living in a just world, it relies on our resolve to unmake the world as it currently is.
The fundamental premise of neurodiversity–as I understand it–is that difference is absolutely mundane. I believe that neurodiversity does have liberatory promise insofar as the idea of “diversity” is properly understood. Human cognition and behavior are so diverse that they defy taxonomy completely. There is no normal humanity from which to deviate or to use as a point of reference; difference is the rule. I do think that Silberman would agree, I just also think that he doesn’t quite get there in the text of his book. In the end he still imagines a world built by and for non-autistic people, in which autistic people don’t quite fit and need to be accommodated. Even in the rosiest future, we’re still outsiders.
The paradoxical promise of Haraway’s cyborg is that its liberation lies in its own dissolution. The cyborg carries in itself the possibility of rupturing the binary systems and taxonomies that created it, but in doing so it must cease to be a cyborg. Similarly, the liberation of autists and other neurodivergent people calls for the abolition of the very categories “autistic,” “neurodivergent,” and “neurotypical.” Not for those categories to be reimagined, or renamed, or subdivided, but for the entire taxonomic system to be dissolved.
In a world where autism exists, because we do taxonomize human difference and build systems of power around it, I am autistic. I am also nothing more or less than just another person. I am not magic. I am not an object for you to project meaning onto. I don’t exist to teach you anything. I have nothing profound to tell you about yourself or about human nature or about humanity’s collective past or about our future. I still deserve to live and thrive in the world.
I am not here for your benefit but listen: I am here. And we are in this together.
Originally published at carrows-blog.tumblr.com.