Do I suffer from autism? Yes. Is the suffering due primarily to needs unmet by a world designed for non-spectrum people? Absolutely.
And that fact is why I’m so disturbed by the puzzle ribbon. It may seem nitpicky. I believe– or at least hope– that most people who display the ribbon do so with genuine good intentions, to signify their solidarity with autists. But the symbolism is all wrong. It’s more than offensive; it’s harmful.
It is, at its core, objectifying. It defines a group of diverse individuals by their collective relationship to the majority, as something incomplete and enigmatic. It suggests that for non-autists to understand us, they must, perhaps through research and analysis, piece together an objective perception of our “condition.” This rhetoric feeds into the paternalistic misconception that autists need “help.” Treatment. Acclimation to the norm. And at its root– a cure.
I’d like, here, to draw a couple of comparisons that might clarify the problem. First of all, the counterexample of the rainbow used to express membership in or alliance with the queer community. This symbol is far less, if at all, problematic. It does not insinuate that queer people are defined by existing outside the typical community. Rather, the rainbow is by definition inclusive, representing the continuity of sexuality, embracing unity and diversity, not limitation.
By adopting the term “ally,” people cast themselves as friends and equals to people of a variety of sexual self-definitions, comrades-in-arms against inhumane attitudes and policies, not as “supporters” of a handicapped group unable to advocate for themselves. Furthermore, the rainbow image was initially created and used by queer people ourselves, and has not been appropriated, but willingly shared with full respect for and accordance with its original intentions.
At the opposite extreme, whose relevance may at first seem gratuitous and hard to grasp, I want to cite 19th- and 20th-century colonial rhetoric about black Africans. Joseph Conrad hits the nail on the head in Heart of Darkness when Marlow describes the difference between conceiving of truth as a “kernel” inside a shell to be cracked– something illusive, but tangible– versus the way he himself perceives it, as a distant light sometimes illuminating, but coloring, not penetrating, a constant haze.
Colonial rhetoric sought to categorize and define African peoples by contrast to its own mores. It claimed to have determined an objective truth: that the continent was universally characterized by darkness and barbarism, through which white post-Enlightenment virtues could penetrate and emerge victorious. Colonialism was couched in terms of rescue, without regard or respect for the experience of non-white cultures. The white invaders believed they had cracked the nut of foreign existence, and found the kernel wanting. In seeking– whether as pretext or genuine, misguided good will– to enlighten Africans, they neglected their own moral development and denied the possibility of reciprocal outreach.
The next step up from rescue and the shedding of “light” into “darkness” is the concept of support. The puzzle image is little different from the metaphor of the nut. At the least, autism “advocates” don’t claim to have already extracted the kernel and decided how to cook it. But they leave the possibility open, and laud it as their goal. To piece together the puzzle. To form a coherent non-autistic conception of autism as an object in its whole. (Tangentially, I find it significant that the imagery of this whole is always two-dimensional.) The puzzle ribbon seeks to construct a truth. The problem is that this truth is non-existent.
What this ideology does, at its heart, is discount the personal experience not just of autists, but of all social anomalies and discontents. It says that we are not worth knowing, because it’s more important to know about us. That the goal is to figure out what should be done about us (read: to us,) not what position we want and choose to occupy.
So what’s the alternative? To reach out– non-autists to those on the spectrum, and vice versa. To share our subjective experiences without the expectation that individuals from either group will ever be able to fully comprehend the world through the eyes of the other, but with the simultaneous realization that neither can such understanding be reached between any two individuals. To define our relations as unique, diverse, and bilateral. To listen and to empathize rather than to construct and support.
Autism support and advocacy need to come, first and foremost, from autists ourselves. Of course, there remains the issue that non-verbal and isolated autists lack the tools to self-advocate. This is a problem that must be addressed, but it does not on that basis discount the value of more “high-functioning” autistic expression. Our friends can learn to be our allies through equal discourse identifying mutually desirable ends. They do not need to research us or puzzle over us.
In a sense, we will always be a puzzle. But so will everyone, to everyone else. The best we can do is to appreciate the beauty and diversity of the parts we can see. When you try to crack the shell of a person or group, you will undoubtedly find out that they were never in there after all.