Autism Isn’t Just A Medical Diagnosis — It’s A Political Identity
By Robert Chapman
At around the age of 6, I was utterly fascinated by the stickers that came attached to pieces of fruit. When at the shop with my mother, I would rush over to the fruit section and gaze, riveted, at all the fruits that we rarely or never bought — basically anything except apples, bananas, and oranges — until it was time to leave. For those fruits we did buy, the stickers would be duly plucked, arranged, and pasted in a precious little book that I either carried around the house or kept hidden under my bed.
In addition to such idiosyncratic interests — and I had many others, over the years — I was also odd when it came to socializing. I didn’t join in with many of the shared games other children played, and even if I tried to, I never seemed to understand the things they grasped intuitively. I was a happy child — my fruit sticker collection was an endless source of fulfillment — but to others, I always seemed a bit eccentric. Teachers often indicated that I must have had bad parents, that I was lacking intelligence, or that I simply didn’t care. Fellow students tended to shun me, or sometimes ridicule me.
I later learned, however, that I wasn’t indifferent, stupid, or even merely weird. I had a “disorder.” The psychiatrists’ diagnostic bible, the DSM, had recently given my behaviors an official designation: “Asperger’s Disorder,” which was in the DSM from 1994 until it was rebranded mild “Autism Spectrum Disorder” in 2013. Pursuits like my fruit sticker collection fell under the category of “restricted interests,” one of the major diagnostic criteria, and the other — ”qualitative impairment in social interaction” — explained my loner nature. Based on these traits, I and thousands of other children in the 1990s and 2000s were deemed to have Asperger’s.
But what exactly does it mean to “have” Asperger’s Disorder, or indeed any other kind of autism? Framing it as a “disorder” that you can “have” seems to imply an underlying biological dysfunction with predictable effects. Much research has been geared precisely toward finding such biomarkers — toward proving that autism spectrum disorders are a discrete thing that can be located at either the neurological or genetic level, and which all people with the diagnosis share.
In recent years, however, this picture of autism has become increasingly untenable. As it turns out, genetic and neurological studies have indicated that there is no consistent underlying “essence” to those ways of being we now classify as autistic; rather, in each case, the underlying difference is idiosyncratic and unique. Over a thousand genes have been implicated in contributing to the condition, without any convincing results, and it has been found that there is no genetic or neurological cut-off people for being classed as “on the spectrum” or not. Of course, this is not to deny that autistic cognitive and behavioral profiles tend to overlap in specific and interesting ways. And it should also be stressed that the limitations of those considered autistic are in many cases very real: A minority of autistic people with added intellectual or cognitive disabilities need 24-hour care. But autism clearly does not operate in the same way as, say, cystic fibrosis.
These findings have led some critics to suggest abandoning the term “autism” altogether. In their opinion, labelling autistic people as such was merely a mistake: We thought there was a natural category called “autism,” but now that we know more about it, we can see that this was an error. Even if those labeled “autistic” do tend to share a vague cluster of cognitive, relational, and behavioral traits, they say, the term “autism” has little biological validity. Nor does it have any predictive or pragmatic value; there is no “cure” or “treatment” that has been shown to improve the wellbeing of all, or even the majority of, autistic persons.
It is probably true that autism, like most other mental disorders, does not have an easily discernible physical cause. But in my opinion, this does not necessarily mean the term is meaningless, or that it should be abandoned. Some of our most significant and deeply-entrenched human categories — like race and gender — are partly rooted in a constellation of physical elements, and partly in historically situated social construction. They do not reside on a single gene, or even a network of genes, and yet they are both extremely “real” and extremely important to our conceptions of self and others. In the same way, identifying as autistic may not be biologically meaningful, but it is politically meaningful.
Consider here how politics, just as much as scientific advancement, has affected our understanding of what it means to be autistic. When Dr. Hans Asperger first used the term “autism” to categorize a distinct group of patients in Vienna during the 1930s, for example, his key aim was not merely to locate some underlying physical disease. Rather, it was to save those with this idiosyncratic way of being, which he argued was valuable due to autistic creativity, from extermination by the eugenicist Nazi occupiers. The baptism of the syndrome was thus itself a deeply political act — a humanitarian response to fascism — rather than a medical one, despite being framed in a medical vocabulary.
Today, largely due to the internet, autistic people have been able to meet and communicate with each other. In this context, the political weight of our diagnosis has broadened: It protects us not only from eugenic extremists, but from a normative society that is liable to misunderstand and judge us. We are no longer isolated eccentrics surrounded by “normal” communities; we have our own communities, norms, and practices, in which things like collecting fruit stickers make perfect sense. Autism, in other words, has begun to develop into a culture, and this culture opens up the space for autistic behaviors to begin to manifest as meaningful.
My fruit sticker collection, I now understand, was not merely the weird obsession of a disordered child. Rather, although I was unaware of this at the time, it was also an intrinsically political act. By finding beauty in an aspect of the world that others saw as irrelevant, I was partaking in an act of creativity that challenged existing standards of acceptability within the dominant social and ideological framework in which I found myself. And around the world, thousands of other isolated autistics were, and are, doing the same or similar things — continually transforming what it means for us to exist in the world in a meaningful way.
This emerging autistic culture is intimately intertwined with the radical notion that autism may not, in fact, be best thought of as a disorder at all, but rather as a different way of being. In creating autistic culture — itself a communal political act — we open up a space in which seeing autism as a legitimate human difference becomes possible. As autistic culture emerges and autistic behaviors begin to take on new layers of significance, the structures that led us to class it as a mere pathology begin to wane.
My point here is not to deny that autism is real, or indeed that many autistic persons and their loved ones face challenges and suffering. On the contrary, autism is real in multiple ways — as a diagnostic category, but more importantly, as a political identity — and it is no less real for not having a discrete underlying physical cause. We should no more abandon the term “autism” than we should abandon the term “gay” because there’s no single “gay gene.” Instead, autism needs to be re-conceptualized as a meaningful social category that is, more than anything else, political. Now, we can offer the fruit sticker collectors of the world not a disorder, but a culture.
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Lead image: Andrea Ovalle/Wikimedia Commons
Originally published at theestablishment.co on June 27, 2016.
