This short video shows why Autism Speaks needs to shut up and listen

I’ve posted before about why I’m not behind the puzzle symbol for autism.  But I want to talk more specifically about why I strongly object to the ideas and methods of the most prominent autism awareness organization, Autism Speaks.

This video from their “About Us” page is revealing.

In the first seconds, we hear the experience of having an autistic grandchild described as “heartbreak” and later as “grieving.”  The boy’s family members make it clear that they were proud of who he was before his symptoms manifested fully.  But they have nothing positive to say about his worth as an autistic individual, and show no concern for what his experience is.

This is emblematic of the lack of self-advocacy in the autism awareness movement.  Coverage focuses on the experience of families, and treats autistic children as if they’ve died or become vegetative.  (It doesn’t focus on adult autists, period.)  If a positive trait is mentioned in an autist, it has to be some savant quality: precocious piano or art skills in someone non-verbal, for example.

In the video, we see clips of children– almost all boys– stimming and averting their gaze, juxtaposed with clips of neurotypical adults clapping and cheering about their own accomplishments.  Toward the end we are granted a few moments of adult (again, almost all male) autists in occupational therapy.  But we don’t see the co-reality of independently living autistic women (hi!) or children who are verbal but melt down in social situations, etc., and we don’t talk to autists, or hear from autists, we talk about them.  And about their behaviors, not their feelings.  It’s like having a women’s rights committee made up only of men.  “Be thankful for your neurotypical advocates, because all you do is stim,” is the takeaway, when it should be, “Here is a platform and a voice for autists and families to open a conversation.”

Brief glimpses of the group’s slogans and catchphrases are also telling.  We get a brief shot of a person’s back with a tee shirt that says, “Autism will not stop me.”  Later, a graphic from a news report shouts, “Autism Epidemic.”  This is the type of militant attitude that Autism Speaks takes toward neurodiversity.  Autism might as well be neurosyphilis.  What do we do with epidemics?  We don’t live with them and understand them and love them, we eradicate them, or try.  I’m not saying Autism Speaks wants to eradicate autists– just our deviant brains and experiences.

But how can they eradicate when all they are trying to do is “raise awareness”?  As they say in the video, awareness and advocacy “go hand in hand.”  What they don’t clarify is that when you talk about something, you advocate for your view.  Because, language.  When your pleas for autism to become a “household name” are coupled with references to an autism “epidemic” and “grieving” for the neurotypical child you’d rather have, a mouth as big as AS’s starts to be heard, and to drown out everything else.

What we need isn’t awareness for its own sake, or awareness so we can “nip it in the bud,” it’s awareness so that we can understand each other.  We need the active inclusion of autistic adults in all forms of advocacy, from advertisements to board meetings.  We need representations of many of the infinitely various manifestations of autism.  We need to spread not just our label, but a respect for neurodiversity and disability rights, to every corner of the globe.  (After all, most people know what ebola is, but again, what do we do with epidemics?)  If you’re not on board with that, then get the hell out of the way so that people can see and hear those you claim to represent.  No amount of money and “awareness” will rectify the damage you are doing to public discourse about the spectrum.

In one of the most offensive moments in this very troubling video, the voiceover informs me that each of us autists costs $2.3 million over a lifetime, for a total of $137 billion (in what time frame and geographical area I have no idea.)  Seriously, who made this video and failed to go “Uhhh… let’s not monetize the value of human lives”?  Gee, Mr. NT Man, I’m sorry that you find no value in my contribution to society and only see a price tag on my head.

I’m not claiming that everything Autism Speaks is associated with is bad.  On my college campus, I once had a conversation with an 18 year old fellow autist and her friends, members of the local AS group, who were letting people throw pies in their faces to raise awareness.  We talked about neurodiversity and they said they had never thought of autism as a disease and didn’t want to “cure” it.  I wish those students’ attitudes, conviction and sensitivity carried over to the national organization.  Until then, I suggest the group change its name to “Autism is Spoken About,” because right now, they do not speak for me.

Puzzling over neurodiversity

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.