But this time, they’ve really outdone themselves.

Before I explain what they’ve done to make me say that, I have to provide a bit of background information. You see, back in early August, Autism Speaks sent out this press release encouraging people to submit videos of autistic individuals for use in an upcoming film project. This project had huge names behind it— most notably, award-winning movie director Alfonso Cuarón, the man behind both Children of Men and the third Harry Potter movie— and was to be titled “I Am Autism.” According to Autism Speaks co-founder Suzanne Wright, this project was intended to “shine a bright spotlight on autism,” and was to be unveiled at the United Nations World focus on Autism on September 22.

Seems pretty harmless, right? “I Am Autism.” Sounds like it might be some sort of “We Are The World”-type production, about how we’re all affected by autism in some way. And “shining a bright spotlight”? I actually had a small gleam of hope that Autism Speaks was finally shedding their doom-and-gloom message for something more positive.

Well…

Yesterday was September 22. The final cut of that video was not only played at the United Nations meeting, but also released to the world via YouTube. And it was not what I was expecting. In fact, it was worse than even the worst-case scenario that I could think of.

This is the video that they released. I’ve transcribed it below, because of course, the video isn’t captioned (something, incidentally, that I’ll get back to later):

– man: I am autism. I’m visible in your children, but if I can help it, I am invisible to you until it’s too late. I know where you live, and guess what? I live there too. I hover around all of you. I know no color barrier, no religion, no morality, no currency. I speak your language fluently, and with every voice I take away, I acquire yet another language. I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined. And if you are happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain. I don’t sleep, so I make sure you don’t either. I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park, without a struggle, without embarrassment, without pain. You have no cure for me. Your scientists don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don’t exist, of course, until it’s their child. I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up, you will cry, wondering ‘who will take care of my child after I die?’ And the truth is, I am still winning, and you are scared, and you should be. I am autism. You ignored me. That was a mistake.

– woman: And to autism, I say…
– man: I am a father…
– woman: A mother…
– woman: A grandparent…
– man: A brother…
– woman: A sister…
– man: We will spend every waking hour trying to weaken you.
– woman: We don’t need sleep, because we will not rest until you do.
– woman: Family can be much stronger than autism ever anticipated, and we will not be intimidated by you…
– woman: …nor will the love and strength of my community.
– man: I am a parent riding toward you, and you can push me off this horse time and time again, but I will get up, climb back on, and ride on with the message.
– woman: Autism? You forget who we are. You forget who you are dealing with. You forget the spirit of mothers…
– all: …and daughters, and fathers, and sons…
– (crosstalk: several people calling out “We are” and the names of different countries)
– all: We are the United Nations.
– man: We are coming together in all climates.
– woman: We call on all faiths.
– woman: We search with technology…
– woman: …and voodoo…
– woman: …prayer and…
– man: …herbs…
– man: …genetic studies…
– woman: …and a growing awareness you never anticipated.
– man: We have had challenges, but we are the best when overcoming them.
– woman: We speak the only language that matters:
– all: Love for our children.
– woman: Our capacity to love is greater than your capacity to overwhelm.
– woman: Autism is naive.
– woman: You are alone.
– man: We are a community of warriors.
– all: We have a voice.
– woman: You think that because some of our children cannot speak, we cannot hear them. That is autism’s weakness.
– woman: You think that because my child lives behind a wall, I am afraid to knock it down with my bare hands.
– man: You have not properly been introduced to this community…
– all: …of parents and grandparents, of siblings and friends and schoolteachers, therapists, pediatricians, and scientists.
– woman: Autism, if you are not scared, you should be.
– man: When you came for my child, you forgot:
– all: You came for me.
– woman: Autism: Are you listening?

So yeah. That was the video that they released. Not exactly the sort of “bright spotlight” I was expecting; that’s either as dark as a black hole, or else one of those spotlights that’s so bright it’s painful to look at. (Or maybe it’s more like a searchlight…)

Really, there are so many different things wrong with this.

First off, we have the same sort of rhetoric that characterized the New York University Child Study Center’s “Ransom Notes” ad campaign— of autism as a ruthless, evil monster that kidnaps children, takes their voice, and holds them ransom. It was bad enough when NYU used it, but Autism Speaks has taken it to a whole new level. We have the comparisons to AIDS and cancer (yeah, because it’s perfectly logical comparing a non-fatal condition to fatal diseases). We also have false statistics; despite what Autism Speaks seems to think, divorce is actually comparatively rare amongst families of autistics, as measured in a Harris poll which was pointed out by Ari Ne’eman.

And of course, just as in the Ransom Notes situation, there was no consideration that one of the autistic kids that this whole thing focuses on might actually end up watching the video, much less comprehending it. (Perhaps that’s one of the reasons it wasn’t captioned, the cynic in me says…)

Second, we have hasty generalizations designed to make things as absolutely gloomy as possible. Not all autistics make it impossible to attend religious services and parties. Not all autistics cause families to bankrupt themselves. Not all autistics… well, you get the idea. And yet the video’s narration frames all of these things as if they were universals.

Third, once again, there’s a focus on the experiences of parents, and practically none on the experiences of autistics themselves. Sarah at the “Cat in a Dog’s World” blog has a particularly good post on the ableism (and general fail) inherent in such statements.

And lastly, there’s the fact that the use of this footage of autistic kids almost feels like a bait-and-switch operation. If I were, in fact, an autism parent who had signed over video footage to Autism Speaks (and not an autistic adult), I, for one, would be quite irritated at what the footage ended up used for. In fact, I have to wonder if any of the parents who did submit footage are bothered by the context in which it ended up being used.

Oh, and incidentally, there is a reason I brought up the fact that this video wasn’t closed-captioned earlier in this post. You see, just on a whim, I decided to try watching the video on mute— and without the narration, it tells quite a different story indeed. Rather than looking like some dark doom-and-gloom scenario, what I saw in the muted video was footage of a bunch of cute kids, and a few autistic adults, being content to be themselves— something I’m sure Autism Speaks likely wouldn’t stand for.

For more discussion and criticism of this ad, check out the following posts:

• Left Brain/Right Brain: Autism Speaks media campaign…I am autism / The Autism Speaks bait and switch with I am Autism
• Cat in a Dog’s World: Autism Speaks & Alfonso Cuaron: Full of Fail / I Am Autism & The Embarrassment Trope / Harry Potter and the Bigoted Charity
• Turner & Kowalski: I am Autism Speaks
• Asperger Square 8: Responding to “I Am Autism”
• Zachary Lassiter: I’m Pissed!!
• A Life Less Ordinary?: What if someone did this with, say, Down’s Syndrome?
• Club 166: When Will They Listen?
• ASAN Northern Virginia: I Am Autism Video: (Autism Speaks Gets It Wrong Again)
• Ari Ne’eman: PRESS RELEASE: Autistic Community Condemns Autism Speaks’ “I am Autism” Campaign

I’m glad to see that those of us on the autism spectrum aren’t the only ones who have issues with Autism Speaks’ tactics and approaches. Thanks, Cara, for getting this out to an even wider audience.

Zach Lassiter of AspieWeb has been in contact with Zazzle, and it’s been revealed that though there was an Autism Speaks complaint, it didn’t involve that particular shirt. In other words, this removal was just a Zazzle employee’s attempt to cover the company’s posterior, so to speak, despite what was claimed in earlier e-mails.

So— and this is probably one of the very few times I’ll ever say this— my apologies to Autism Speaks for claiming they did something that they didn’t.

(Now if only they would involve autistics in their organization and issue an apology for Alison Singer’s statements in Autism Every Day… those complaints, unfortunately, still stand.)

(Cross-posted, in slightly modified form, from DailyKos.)

You might recall that a while back, I posted an entry criticizing some of the tactics of the autism charity Autism Speaks, which I originally posted at DailyKos.

Well, let’s all be thankful that they haven’t (yet) forced DailyKos to take that post down— or, worse yet, sent a cease-and-desist notice to the hosting provider for my personal blog— because of alleged intellectual property infringement. As utterly absurd as that may sound, it is precisely what they’ve done to not one but two autistic bloggers an autistic parodist who have has dared to criticize that organization.

Back in January of this year, an autistic teenager by the pseudonym of ‘abscout’ created a web site parodying Autism Speaks’ site, as shown from an alternate perspective: what if there were an organization dedicated to eradicating all traces of neurotypicality, i.e., lack of autism? It was no more infringing than pretty much any parody in, say, Mad magazine— and, of course, parody has long been legally protected as a fair use of copyrights and trademarks.

That didn’t, of course, stop Autism Speaks from sending the site’s author a cease-and-desist notice— an incident which was even covered in the popular press magazine New Scientist.

One would think the backlash from this incident would have been enough of an embarrassment that Autism Speaks’ lawyers might be a bit more cautious… but no, it seems they’re back to their old tricks.

Just this month, another autistic blogger created a T-shirt through Zazzle, a custom shirt printing service, with the text: “Autism Speaks can go away. I have Autism. I can speak for myself.” No use of any sort of trademarked logos or designs, only the use of a company name in plain text; no libelous attacks, just a statement distancing the wearer of the shirt from a particular organization. Surely that’s got to be fair use, since there’s not exactly any other way to clearly refer to that organization, right?

Not according to Autism Speaks, of course.

This time, the organization’s legal team sent a cease-and-desist notice to Zazzle, forcing them to pull the shirt in question from their online catalog. The shirt’s designer found out about this upon receiving a notification from Zazzle; after further inquiry, it was revealed that this takedown wasn’t just a proactive move by Zazzle, as some had assumed, but was indeed the result of a complaint by Autism Speaks.

In my opinion, this puts Autism Speaks in a bad light: an organization that not only seems unwilling to listen to criticism (as I already covered in my previous post), but actively tries to quash that same criticism through spurious intellectual property complaints. And there’s hardly any doubt that, at the very least, the most recent complaint is spurious: there are already plenty of precedents demonstrating that the use of trademarked names in a critical context is legal. Indeed, some of these past criticisms have even led companies to change the very practices that prompted their critics to complain.

If only Autism Speaks could do the same… but no. One quickly gets the impression that Autism Speaks would rather hush criticism than concede that autistics might actually have a valid point.

And this Georgian isn’t going.

I’ve already written in the past about Autism Speaks, the organization sponsoring this walk, in a good bit of depth, but I’ll just reiterate things in a shorter fashion to drive the point home:

I refuse to support an organization whose idea of treatment isn’t to try to find a way for autistics to function in a hostile world, but rather to “ultimately eradicate autism for the sake of future generations”, in the words of its founder.

I refuse to support an organization which talks all the time about the peril of autistic children, while seeming to forget about us autistic adults, or at most, giving us only a passing mention.

I refuse to support an organization which falsely appears to speak for autistics, when not a single person on the autistic spectrum can be found amongst its board of directors or anywhere else in its leadership.

I refuse to support an organization with a vice president who openly admits to having wanted to drive off a bridge with her autistic daughter in frustration, in front of that very daughter, while cameras are running to record the moment for posterity in a fund-raising documentary.

And in this repudiation, I’m not claiming autistics don’t need support, services, or any other help. Even though I’m on the higher-functioning end of the autism spectrum, I’ve had many moments where I could easily have used a helping hand…or several. I, too, go into meltdowns when I’m feeling stressed or overloaded; I, too, would very much benefit from accommodations that allowed me to actually meet halfway, rather than exerting even more effort than most people dream of just to maintain an appearance of normality.

But this help should be provided with respect. Respect for who we are, for the fact that autism is a pervasive developmental disorder and not just something that can be taken out of us like a tumor. Respect for the fact that our brains work differently, and that methods of teaching which may work perfectly well for a typical child (or adult!) may not work at all for us. Respect for the fact that we may still be aware of what’s going on around us, what’s being said about us, even when it doesn’t look like we understand a word.

Strangely enough, organizations for other neurological disorders—disorders with even more of a popular stigma than autism—get it. See, for instance, Joel Smith’s comparison of Autism Speaks’ rhetoric with that of the National Down Syndrome Society for just one example.

But unfortunately, even with plenty of protest by autistics all around the country, the world, and the Internet, Autism Speaks just doesn’t seem to grasp this idea.

And that is why I cannot honestly support them.

Imagine, if you will, that an organization existed by the name of “Womanhood Speaks,” which, on the surface, appeared to be in support of women’s rights.

Now imagine that the governing body of this organization only included members of the male gender, with not one female represented in its ranks. Imagine that its actual aim was to create a registry of all females and force them to become more masculine, completely disregarding the fact that a majority of females were perfectly content with their womanhood and even found it to be advantageous. Imagine that members of its leadership appeared on popular TV programs talking about the epidemic of womanhood and how it needed to be eradicated.

Doesn’t sound too appealing, does it?

This hypothetical situation may seem utterly absurd, but for one segment of the population— albeit a much smaller subset than that identifying as female*— it isn’t all too far from reality.

I’m speaking of autistics, and more specifically, of the organization known as “Autism Speaks.”

Such a deceptive name. After all, a fair number of autistics are unable to speak; the name Autism Speaks suggests an organization that is willing to speak on their part for greater acceptance and improved services that might enable them to more actively participate in the world while still being able to benefit from what strengths autism might provide.

And autism does have its associated strengths: a dogged persistence; an ability to look at matters objectively and logically; an ability to focus on details that others might miss entirely. If we get rid of the “bad” aspects of autism, we’re also likely to get rid of these traits that, to be honest, can be extremely advantageous in certain lines of work.

In truth, however, Autism Speaks is not very amiable to autistics.

First off, despite the group’s ostensible aim of speaking for autism, there is not one single autistic on its board of directors, or otherwise represented within the ranks of the organization. There are plenty of autistics who are fully able to advocate for themselves, who are fully able to express what sort of support they would benefit from, and would have benefited from as children; however, Autism Speaks wants very little to do with them.

Secondly, and more importantly, the public face of the organization belies its true intentions. Perhaps most notably, Autism Speaks recently allied with another organization that’s also somewhat infamous in autism circles, an organization by the rather presumptuous name of “Cure Autism Now.”

(Just for clarification’s sake, I should point out once again that, though I protest cures for autism, I am not against seeking services and support to aid autistics, or even to ease the lives of parents of autistics. This seems to be a very common misunderstanding; see, for instance, this blog post by autistic advocate Joel Smith on that subject.)

Indeed, I’d go so far as to say that some significant members of Autism Speaks’ leadership simply don’t understand the point of view of autistics.

Take, for instance, the case of Alison Tepper Singer, the vice president of communications and awareness for Autism Speaks, who was also prominently featured in “Autism Every Day,” a fundraising film made by her organization. In one rather famous— and controversial— scene, Singer describes a moment in which she was so exasperated, she had seriously contemplated driving off a bridge with her autistic daughter. A pretty callous thing for any parent to say, but particularly so in front of the child being described, as was precisely the case in this video. Should I mention that the child in question is clearly trying to show affection toward her mother, and being shrugged off, mere seconds before this statement is made?

For those who wish to watch the video in question and see the evidence for themselves, I’m not going to give that video any greater Google ranking by directly linking to it, but a link can be found in Wikipedia’s article on the film, which also discusses some of the criticism thereof.

And if you think this sort of rhetoric has no effect, tell that to the family of Katie McCarron, a three-year-old autistic child from Illinois who was suffocated to death by her mother slightly over a year ago. It may be mere coincidence, but it’s worth noting that this murder occurred just four days after the initial release of “Autism Every Day,” as pointed out by Kristina Chew of Autism Vox. Chew also quotes Katie’s grandfather Mike, who has no kind words for so-called “advocates” of the Autism Speaks sort. There’s not even the excuse of McCarron’s mother having been an overburdened parent in the vein of Singer; as the Coalition for Citizens with Disabilities in Illinois mentions, Katie had not lived with her mother for some 20 months before the incident. Yet that was the primary spin given to the story by the media: an expression of sympathy for the mother, with almost no attention given to the thoughts of those who were Katie’s primary caregivers.

Yet Autism Speaks has major clout. They’ve allied with popular children’s stores such as Toys R Us and Build-a-Bear Workshop, accepting donations from shoppers there (while not making it quite clear what those donations might be used for). Representatives have appeared on popular TV talk shows such as “Oprah,” “The View,” and “Larry King Live,” presenting a very one-sided view of what life with autism entails— while barely allowing critics the chance to present an alternate viewpoint.

Oh, and one of their biggest promoters by far was Don Imus. Draw from that whatever conclusions you wish; I’m not touching that one, other than to point out that he was no stranger to controversy and that he had a large captive audience.

And they’ve been hitting close to home for me lately, in the literal geographic sense. In Atlanta several weeks ago, the combined force of Autism Speaks and Cure Autism Now sponsored a so-called “walk for autism” that gained a fair amount of local and regional publicity. (An interesting definition of “for,” to be sure, when one of the organizations involved is clearly against autism judging from its name alone.)

And today, Autism Speaks is going to have an even larger audience, made up of NASCAR fans. No, I am seriously not making this up. The race that used to be known as the Dover 400 is being held this afternoon, but under a new name, thanks to the wonders of sponsorship; it is now the Autism Speaks 400. (Insert your own joke about autism and repetitive behaviors here.)

So that is why I’m posting this blog entry. It’s to get the word out from the other side of the autism debate, the one that doesn’t get all the media attention. It’s in the hope that someone, anyone, who participated in the walk might start to have second thoughts about it. And most of all, it is with the hope that others like myself can get the support we need to live in a sometimes frustrating society, not a cure that is forced on us without our acceptance.

Autism Speaks surely doesn’t speak for this autistic— nor do they speak for numerous other autistics and advocates, for that matter.

* This sentence, which originally read “…than that with two X chromosomes…”, was revised on 1 August 2011 upon the author’s realization that not all women have two X chromosomes. Mea culpa! (back)