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Action Alert from ASAN

Passing this on because I thought the whole "I'm autism and I've kidnapped your REAL kid" ads were horrid enough already...



 Autistic Community Condemns Autism Speaks’ “I am Autism” Campaign

“We are the true voices of Autism,” say Autistic adults; Campaign spreads stigma, prejudice and inaccurate information; ASAN vows protest of upcoming Autism Speaks fundraisers

Washington, DC (September 23rd, 2009) - The autism community reacted in horror today to Autism Speaks’ new “I am Autism” campaign, presenting Autistic people as kidnap victims and burdens on their family members and communities.

I am autism. I have no interest in right or wrong. I will plot to rob you of your children and your dreams….And if you’re 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,” says the “I am Autism” video, released yesterday and created by Academy Award-nominated director Alfonso Cuarón and Grammy-nominated songwriter/producer Billy Mann. [Full text is available here.]

“This is the latest in a series of unethical fundraising strategies adopted by Autism Speaks,” said Ari Ne’eman, an adult on the autism spectrum and President of the Autistic Self Advocacy Network (ASAN), “This type of fear mongering hurts Autistic people, by raising fear and not contributing in the slightest to accurate understanding of the needs of Autistic adults and children.” ASAN’s Columbus, Ohio chapter has already made arrangements to protest Autism Speaks’ upcoming local fundraising walk and other ASAN chapters will be making similar arrangements shortly, said Ne’eman.

In addition to relying on fear and pity mongering to raise funds, the Autism Speaks video repeats frequently referenced claims of higher than average divorce rates amongst parents of autistic children. However, a 2008 study conducted by HarrisInteractive for Easter Seals in cooperation with the Autism Society of America found divorce rates for parents of Autistic children lower than those for families with no children with disabilities. The video also relies heavily on the idea of rapidly increasing autism rates. Another new study, released the same day as the video, by the British Government’s National Health Service found that autism rates among adults are the same as amongst children, indicating that the popular “epidemic” claim of rapidly increasing autism incidence is likely false.

  “This video doesn’t represent me or my child,” said Dana Commandatore, a parent of an Autistic child living in Los Angeles, California. “Whatever the challenges that autism may bring, my son deserves better than being presented as a burden on society. Autism Speaks’ misrepresentation makes my life and the life of my child more difficult.”

 “Autism Speaks seems to think that parents' embarrassment at their kids' meltdowns is more important than autistic kids' pain,” writes Sarah, an Autistic blogger at the blog Cat in a Dog’s World, “Autistic people deserve better than what Autism Speaks has to offer.”

 The new video is reminiscent of the December 2007 NYU Child Study Center “Ransom Notes” campaign, which consisted of faux ransom notes claiming to be from an anthropomorphized disability which had kidnapped a child. Those ads were withdrawn after two and a half weeks, due to widespread outcry from self-advocates, parents and professionals and the condemnation of twenty-two national disability rights organizations, led by the Autistic Self Advocacy Network. The Ransom Notes controversy was reported on by The Wall Street Journal, The New York Times, Good Morning America, The Washington Post and other major media outlets. ASAN announced plans to work with the cross-disability community on a similar response to Autism Speaks’ campaign.

 “The voices of real autistic people, and of families who do not subscribe to the presentation of their family members as something sinister and criminal, clearly do not matter to Autism Speaks,” said Paula Durbin-Westby, an adult on the autism spectrum in Virginia, who serves on the board of the Autistic Self Advocacy Network. “Our community is furious about Autism Speaks’ continued exploitation and will be taking action.” 

Selected initial responses to Autism Speaks’ “I am Autism” campaign from bloggers in the Autism community follow: 

Club 166 (Parent): http://club166.blogspot.com/2009/09/when-will-they-listen.html

“The above video takes up where the Ransom Campaign ended, and goes on from there. Not content just to dehumanize autistic individuals, the Autism Speaks video goes on to paint a picture of horror using the most vivid imagery it can find-your marriage will fail, you will go broke, you will never be able to function in society at all, etc…

Two years ago the NYU Child Study Center claimed ignorance of the way that autistic (and other disabled individuals) felt. The response at that time was heard throughout the country, even in major national media. I wonder what excuse Autism Speaks can possibly come up with this time.”

 Turner and Kowalski (self-advocate): http://turnerandkowalski.wordpress.com/2009/09/23/i-am-autism-speaks/

“I am Autism Speaks

I will steal your voice and make sure you can never speak for yourself.

I will steal your parents’ money and spend it on a residence on Park Avenue.

I will use demeaning language to degrade, pity and marginalize you.

I have declared war on you.”

Emily (Parent):


 “This is horrific. I cannot believe that these people thought it was OK to demonize a developmental disorder in this way, behaving as though autism were something separate from the people who have it, like a wart or a blight or a boil that should be burned off or lanced and drained before it infects someone else or destroys your marriage, rather than what it really is, a differential neural construct that is just as much a part of the people who have it as their eye color. Is there any other developmental difference or genetic disorder that could be vilified in this way with an assumption of impunity? Dyslexia? Schizophrenia? Tourette's? Depression? Chromosomal disorders? Doubt it.”

 Sarah (Self-advocate):


“Autism Speaks seems to think that parents' embarrassment at their kids' meltdowns is more important than autistic kids' pain. They're wrong in that, and they're also wrong to suggest that donating money to Autism Speaks and trying to find a "cure" is the only way to solve this problem. Because while Autism Speaks-funded scientists play with genes in their laboratories, real autistic people are living our lives and will continue to suffer serious anxiety in many public places. Instead of writing another check to Autism Speaks, I suggest actually trying to figure out why an individual autistic person may be experiencing these difficulties. And taking steps on both a personal and societal level to ensure that public places are more accommodating of autistic people.

Autistic people deserve better than what Autism Speaks has to offer.”

Ari Ne'eman
The Autistic Self Advocacy Network

It's all obnoxious, but I particularly dislike "I'll ruin your marriage and bankrupt you, the parent." I hate how these things always focus so much on the suffering of the parent or caretaker. Not to deny that parenting someone who thinks very differently and performs behaviors that others (and the parents/caretakers themselves) don't understand isn't hard and doesn't come with its share of, yeah, real suffering, but --

-- isn't the one who really matters the kid?


( 14 comments — Leave a comment )
Sep. 29th, 2009 03:35 am (UTC)
This is awful D:

Is it ok if I link this?
Sep. 29th, 2009 03:55 am (UTC)
Fine with me. Let's get those bastards.
Sep. 29th, 2009 09:56 pm (UTC)
Done. Sorry for the delay on this. Do you mind if I also take it to Unfunnybusiness?
Sep. 29th, 2009 10:30 pm (UTC)
Not at all.
Sep. 29th, 2009 03:59 am (UTC)
just edited post to include the longer full release from ASAN
Sep. 29th, 2009 10:35 am (UTC)
One thing I've noticed in my past two years work as a pediatrician traineed is that health care providers tend to feel empathy for kids with cancer, but for the parents of kids with marked developmental disabilities. I'm not quite sure what to make of this observation, but if it's true, I think it's the key to a lot of things, including horrors like this.
Sep. 29th, 2009 10:31 pm (UTC)
Yeah. I don't get it. I mean, I no longer think caregivers' burden doesn't matter at all... but I still find it hellaciously creepy that the focus seems to always be on the way the child's "problem" will somehow infect the adults.

You're the big boys and girls, Mommy and Daddy. Act like it.
Sep. 30th, 2009 12:33 am (UTC)
Sadly, I think I do get it. Most neurotypical people can't seem to figure out how to empathize with non-neurotypical people. So they empathize with the only people in the situation who are like them enough to make sense. And they say those with ASDs are the ones who lack empathy. . .
Sep. 29th, 2009 03:31 pm (UTC)
The first thought in my head at “I am Autism” was that it would be a take on the “I’m a PC” commercial with the little girl making slideshows for Windows 7.

After reading the rest of the post-- Wow, I’m appalled.

I don’t know much about Autism. I have a friend with a son who is placed somewhere on the Autism spectrum. He doesn’t understand body language, doesn’t get jokes that are “clever” instead of gross, (but he’s also a 10 year old boy so …) doesn’t get included with other kids for games on the playground. Needs a special attendant in class.

I should put all those verbs in the past tense. A job change and move to a new area, she’s put her son in a new school environment. He’s in a situation where he’s encouraged and teachers take the time to ask him questions directly when he “acts up” and treat him with a bit more respect as a person than just a problem that needs dealt with. Now, he’s pushing himself to read better and has a dream to build a working steam locomotive by a design he wants to learn to draw.

I know not all cases are 1:1 to my friend’s son with such a positive spin, but that too is a face of autism. A smart, mechanically inclined child who learns he’s different, not fucking broken.

It’s frustrating enough for the parents, especially when they get muted whenever they show an ounce of frustration. (the Autism postsecret anyone?) Shit like this is unhelpful.
Sep. 29th, 2009 10:36 pm (UTC)
I know not all cases are 1:1 to my friend’s son with such a positive spin, but that too is a face of autism. A smart, mechanically inclined child who learns he’s different, not fucking broken.

Precisely. I'm not trying to say that nothing bad could ever come from having autism. I'm not saying there aren't actually harmful behaviors that some people have, or have some of the time, or... etc.

I am saying that... jesus fuck, the neurodiversity movement has been saying "what about understanding that sometimes we're just DIFFERENT FROM YOU and that sometimes asking for a different environment or attitude is all that icky scary BAD BEHAVIOR is about?" for how long now?

Fuck. And we rhink THEY have problems understanding US?

Edited at 2009-09-29 10:37 pm (UTC)
Sep. 29th, 2009 07:26 pm (UTC)

I mean I do have sympathy for parents, but this can be expressed is simple grace towards them when they are dealing with unexpected behaviors.

However, there is also the person with autism who is simply having to endure a realty they can't navigate well through. As such their responses SOMETIMES, EMPHASIS SOMETIMES, are counterproductive. I think the fear of autistic people is the same one we get when we hear "schizophrenic" applied to people. There may be cause for fear, but generally it's a matter of making the effort to communicate effectively - or leave off communicating until things settle down.

It isn't ALWAYS so necessary to prevail in one's own agenda, you know. Standards of decorum are counterproductive when they impede human understanding and care. And maybe, just maybe, there are ways to think of autism, at least at times, as an asset and not a pur liability.

Thanks for noting this Trin. One of your most incredible contributions to MY life is in apprising me of apsects of disabilities that would otherwise not be noted.
Sep. 29th, 2009 11:03 pm (UTC)
Oh, yeah. Like I said to sentso above, I'm not trying to say that nothing about behaviors associated with autism, or nothing about sensory issues, or nothing about reduced executive function, etc etc, could ever be negative.

What I am saying is that the endless focus on how it affects the neurotypicals around is... weird. Even if I agreed that autism is 100% negative and tragic, which I do not...

...as someone said above, we don't go around saying "Look at what Brianna's cancer has done to her poor parents!"

I mean, yeah, we may when it's relevant, because of course her cancer will affect her parents and of course that matters. But where's Brianna when the whole deal is how her cancer made Mommy and Daddy break up?

Edited at 2009-09-29 11:05 pm (UTC)
Sep. 29th, 2009 10:27 pm (UTC)
as the mother of a kid on the spectrum, I read this with nausea, revulsion, and a growing rage. I simply cannot believe this exists. I'm... I can't even put words to it. Thanks for sharing. This mom's about to go to war.

Sep. 29th, 2009 11:04 pm (UTC)
:D March on, awesome mommy. I'm right here behind you.
( 14 comments — Leave a comment )


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