Normal Is Overrated

Musings and meanderings on the autistic spectrum

September 23, 2009

Autism Speaks Hits A New Low

If you’ve been reading my blog, you probably know my stance toward Autism Speaks by now. It’s an organization I’ve always had my share of issues with; see my past posts on the subject for some idea of why.

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:

Filed under: Autism Speaks,Controversies — codeman38 @ 2:04 pm

26 Comments »

  1. Another thing that occurred to me is that — if I’d seen that video as a kid (and known I was autistic), I’d probably have been terrified people were going to start sticking pins in me or something, given the “voodoo” reference. Obviously these people were NOT considering the effect that the video’s statements could have on the (often highly literal) autistic kids who might end up seeing it.

    Really, though, I suspect they probably don’t think “real” autistic people even know they’re autistic to begin with, and that even if we do know, we can’t understand what’s being said about us. Which is ridiculous — I can’t imagine any psychologist, even, agreeing with the notion that “no autistic person has any comprehension of what is being said in their presence”.

    So, the only option remaining is what I suspect is more likely true — that “Autism Speaks” simply doesn’t *care* to consider autistic people in crafting their messages. Talk about a lack of empathy!

    Comment by AnneC — September 23, 2009 @ 3:23 pm

  2. So, the only option remaining is what I suspect is more likely true — that “Autism Speaks” simply doesn’t *care* to consider autistic people in crafting their messages. Talk about a lack of empathy!

    Hah, yes. They say we’re the ones with no empathy, and yet…

    Comment by codeman38 — September 23, 2009 @ 3:25 pm

  3. OK, so I finally, while waiting on hold watched a bit of that video and can only think, THE HELL?
    My brain splutters over how annoying it is…
    To turn autism into a personification of doom and gloom when they are not helping the situation one bit.
    This is an organization that probably works with other organizations who charge folks a ton of money for things like chelation that could be potentially dangerous!
    And yet somehow autism is the bad guy in this?
    Don’t even get me started on the images of autistic people, doing their own thing, with that ominous voice playing. ARG!
    There’s nothing about, well maybe this child has trouble going to parks and churches because there’s something there that disturbs and frustrates the child. So instead of addressing that it’s just that old, evil, horrible boogyman that is AUTISM.
    It’s dehumanizing as hell!
    Are they just trying to annoy us?

    Comment by Synesthesia — September 23, 2009 @ 3:30 pm

  4. I don’t know that they’re trying to “annoy” us.

    “Demoralize” might be closer.

    Because they know they can say all this crap and all the most powerful people will likely fail to do anything about it or criticize them. And then with any luck we (that is, actual autistic people) will just shut up and go away and stop being so inconvenient. Then they can continue to run the Pity Party Industry as they see fit, complete with gala balls and glossy flyers and sad, sappy music playing in the background.

    It really is totally, disgustingly, unethical.

    Comment by AnneC — September 23, 2009 @ 3:54 pm

  5. “I Am Autism” — Awareness video by Alfonso Cuarón — “Ransom” Reprise…

    Remember the 2007 “Ransom notes” campaign, by the NYC child study center? It looks like Autism Speaks didn’t learn the lesson. They commissioned director Alfonso Cuarón (who has a child with autism) to make an awareness and fundraising video. Many…..

    Trackback by Trusted.MD Network — September 23, 2009 @ 9:21 pm

  6. Thanks for the transcript. I heard the “voodoo” thing the first time through and thought I couldn’t possibly of heard that right. And yes, the similarity in language to the Ransom Notes thing is too weird. They haven’t learned a thing. Perhaps they will now.

    Joe

    Comment by Club 166 — September 23, 2009 @ 9:49 pm

  7. If you want to support a more positive outlook on autism, I suggest visiting Carol Boyce’s film project that is in desperate need of more funding. She has given her time and energy freely to beat this disorder and restore families. http://www.savingalostgeneration.com

    Debby
    Homeopathy World Community

    Comment by Debby Bruck — September 23, 2009 @ 10:06 pm

  8. @Debby Bruck: You have read my other posts, right? My issues with this video don’t end with the fact that it’s a negative outlook; it’s also worth noting that there are many who don’t think autism is something to be ‘beaten’, but rather something that needs to be accommodated.

    Also, I’d have a lot more sympathy if the video, or anything else on the site, actually recognized that there are people on the autism spectrum who are over age 18. Even the execrable Autism Speaks video at least showed footage of an autistic adult.

    Comment by codeman38 — September 23, 2009 @ 10:51 pm

  9. I just wish that Autism Speaks would shut the fck up.

    Scare-mongering shits with too much fckng money.

    Their activities have consistently made life worse for
    autistic people since the bastards set themselves up.

    Comment by David N. Andrews M. Ed., C. P. S. E. — September 24, 2009 @ 2:21 am

  10. (Sorry, David, but I have a policy of keeping comments on this particular blog at the equivalent of a PG-13 or BBFC 12 rating for a number of reasons, including keeping these posts as widely accessible as possible via overzealous proxy servers like the one my high school had. I don’t, however, redact on postings elsewhere, such as LiveJournal and DailyKos. And I decided in the end to just disemvowel the words in question rather than bleeping them out entirely, because I wanted it to be as transparent as possible while still throwing off said proxy servers…)

    Comment by codeman38 — September 24, 2009 @ 2:27 am

  11. You know, we have 3 boys on the spectrum and nothing in this video even comes close to the joy we get from them, and the pride that we have for them. They aren’t a burdon. They aren’t causing us to have a broken relationship. They aren’t going to cause the known universe to collapse around us all. They are our children, and we love them just as much as we love our nt daughter. Autism Speaks obviously knows nothing about the mind of a person with Autism, or they wouldn’t have been so quick to pigeon hole Autism into such a steretyped category. Each person on the spectrum is as individual as each person who isn’t on the spectrum. That’s why it’s classed as a spectrum!!!! There are so many different ways for the brain to function with or without Autism. It’s not a disease, it’s a condition in the brain. For some it can be managed better than others. No two Autistic people are the same. Personalities shine through! We love our kids!!! We hate this video!!!

    Comment by Vince Steele — September 24, 2009 @ 8:22 am

  12. [...] (Transcript available here) [...]

    Pingback by Help Fight Back Against Autism Speaks’ Attempts to Speak For Autistic People! | cripchick// blog — September 24, 2009 @ 3:42 pm

  13. I absolutely agree that muting it seems to send the opposite message! All I could think was, what a positive disability-rights commercial it could have been.

    It really is a matter of the narrative making the whole difference.

    Comment by DaisyDeadhead — September 25, 2009 @ 12:58 am

  14. In all of the consulting I do, I preach that the self-actualized life of a person with autism may look very different from the NT version but it is no less wonderful. When some parents seem very upset at the diagnosis of a fairly high-functioning person, I go ahead and mention, hey, I have most symptoms of Asperger Syndrome but I was never diagnosed because the diagnosis did not exist until I was already in college. In a college honors program. I wish I’d had much more social skills assistance but in a way, I’m glad I have been able to work it out on my own because some of those programs are torture in the wrong hands. Lunch Bunch or Circle of Friends, for example, can turn into making the child with Autism/Asperger Syndrome think these people are REAL friends when they’re really just peer helpers. But the reaction of some people is sickening. No you can’t have that because you’re successful. What, the goal of therapy for a person with more severe symptoms isn’t success? Thanks for posting this information. I haven’t the stomach to watch the video.

    Comment by Spedconsult — September 25, 2009 @ 2:44 pm

  15. @Spedconsult: I wasn’t diagnosed until late in high school, myself– as a straight-A student in honors and AP courses. So I can very much understand.

    Comment by codeman38 — September 25, 2009 @ 2:46 pm

  16. it’s horrible – my son has Asperger’s as do I, and he has meltdowns and can be overstimulated & overstimulating to others …but it hasn’t ended my marriage (in fact I am re-married to an amazing man who is fathering him eventhough he isn’t the biological father)

    I haven’t the stomach to watch the video, reading the transcripts was enough!

    I don’t need to be cured, but accepted for who I am

    Comment by Jan — September 26, 2009 @ 12:11 am

  17. Thank you very much for the transcript, I am going to link back to your blog so that others may have the opportunity to read it.

    Comment by Colleen — September 28, 2009 @ 12:45 am

  18. “Lunch Bunch or Circle of Friends, for example, can turn into making the child with Autism/Asperger Syndrome think these people are REAL friends when they’re really just peer helpers.”

    This is, SpedConsult, one of my more serious concerns with programmes like those… it doesn’t really mean that real friendships will result from anything that happens during the time the programme is being implemented. And it is a danger… self-esteem can be quite brittle for the Asperger-autistic kid.

    Comment by David N. Andrews M. Ed., C. P. S. E. — October 5, 2009 @ 5:10 am

  19. [...] cant. (Transcript here.) And it took about two seconds before the participant bloggers in the Autism Hub (a group of [...]

    Pingback by Lots of Stuff About Us, All of It Without Us: Writing a Letter to a Senator « fat fu — October 9, 2009 @ 1:05 am

  20. [...] [Transcript via Codeman38] [...]

    Pingback by Time to Change How You Think About Autism. « Healing… Through the Eyes of Autism. — January 10, 2010 @ 12:26 pm

  21. Hey Codeman,

    I read your article with great interest. I think the errors with the video began at the planning stage. I agree with you, my expectation was of highly a anticipated video which sends a powerful message on behalf of the Autism community.

    Thank you for transcripting the video. I too watched and got the feeling of a sinister evil descending. I then tried to put a positive spin on the video by analysing the purpose, audience and delivery.

    If the purpose was frightenig the audience into taking notice or infuriating parts of the Autism community, then this was acomplished. One problem, the video doesn’t indicate clearly the intended audience. Was the delivery for policy makers or heads of Government? I understand it may not be for people with Autism or their relations; but why wasn’t this clearly addressed at the planning stage.

    I wouldn’t describe the video as edgy, more misguided.

    btw, i don’t follow Autism speak (or really know who they are), so I’ll read up on your posts.

    Cheers
    Steve

    Comment by Steve Ingram — February 16, 2010 @ 9:57 pm

  22. Hi.. Great site!! I’m a mother of an autistic child. Have a new site online (autism-mom.com) and am looking for some support from the community! God Bless you.. Lu Ann

    Comment by Lu Ann Mentzer — March 29, 2012 @ 10:42 pm

  23. Thank you very much!

    Comment by Lu Ann Mentzer — March 30, 2012 @ 1:07 pm

  24. [...] horrible transcript from an Autism Speaks video (since removed after [...]

    Pingback by Guardian Spirit, Guardian Auttie – A reply to an Autism Speaks Campaign « Guardian Auttie — April 30, 2012 @ 7:42 pm

  25. [...] with people on the spectrum (as far as I know, most of the board is still full of NTs), it claims that autism is a set of deficits and not differences (when really, it’s the other way around) and threatening bloggers talking about Autism Speaks [...]

    Pingback by Autism Speaks and Invision Power Services Refuses to Listen | Not My Pony — February 7, 2013 @ 8:06 pm

  26. […] You want polarising propaganda, here is an example that Goebbels would ejaculate at the sight of. […]

    Pingback by How you do not talk to an autistic adult. (Again.) | I Still Find It So Hard... — June 24, 2014 @ 11:57 pm

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