Wednesday, September 23, 2009

Responding to "I Am Autism"

A nice collection of links to posts about the "I Am Autism" Public Disservice Announcement can be found at I Speak of Dreams.


  1. They still don't get it. Whatever anyone says or does, Autism Speaks just never get it.

  2. You are right that there is a lot they don't get and never will. One of the things that disturbs me most about this, however, is that I am 100% sure that they do know how offensive this is to many autistic people.

    Whether or not they agree that we have a valid reason to be offended, they could have chosen to respect the views of a population they claim to serve. The new video is a slap in the face to all of us who have spoken out against their past offenses, including the horrific Autism Every Day.

  3. They're a hate group and nothing else...

    Great graphics, as always.

  4. Is that whole trapped behind the wall thing being kidnapped thing even accurate?
    They don't bother to find out because they don't WANT to try to understand ACTUAL PEOPLE WITH AUTISM!
    They probably don't bother reading autism blogs from the perspective of autistic people.
    They don't have anyone autistic in their organization telling them what it's really like.
    They're as annoying to me as ex-gay groups or something.
    Why must they be this loud charity standing on a mountain screaming at the top of their lungs? Drowning out people with a different perspective?

  5. Just to be clear - I wasn't trying to justify them.

    They don't get it because they don't make even a small attempt to get it. This isn't about a failure to understand. It'a about not even thinking it's necessary to try to understand.

  6. sanabituranima,
    Yes, that was clear. I was just adding my own two cents worth.

  7. I agree, Bev, that there's NO way that they don't know that they're offending many autistic individuals. Not after what happened with the Ransom Notes thing two years ago. Even THEY couldn't have missed that.

    The fact that this is intentional just magnifies the offense.

    And yes, as always, great work on the graphics.


  8. "The new video is a slap in the face to all of us who have spoken out against their past offenses, including the horrific Autism Every Day."

    I was thinking the same thing. It may even be intentional. Besides what autistic people remind them of which they want to get rid of in their own kids, I think they need to put a face on the enemy to inspire the warrior attitude which creates and sustains converts to their cause.

    As long as there fight is just against governments that aren't doing anything to help them they really never see or get to confront actual people. I think they have focused some of their anger on autistic people themselves who speak against them as way to identify their enemy.

    By doing that it shows that the way they attempt in the video to separate the fight against the disorder and the fight against the disordered isn't really something they are prone to doing.

  9. seriously, this is what it was? stealing from a failed campaign of 2 years ago? (haven't even seen it) this mother of a nonverbal autistic child who cannot yet type is appalled. I do not think my child is kidnapped or is hiding behind a wall. His smiles tell me otherwise, and he deserves better than this.

  10. Autism Speaks seems to be working hard to make it clear that they're speaking for and to a select group of parents who see themselves as the victims. I wrote a rather angry tirade on it as well as an angry email to AS. That's alright, let them appeal to that small select group of parents. There are more autistic individuals and parents of autistic individuals who oppose that nonsense. I reckon we can make a lot of racket. No one can see that video and not see that AS is trying to villify autistic individuals. It's not acceptable, and it lets reasonable people know that their charitable contributions have no busines going to such a reprehensible organization.

  11. I'm expecting another You've Just Gotta Say... post from Attila the Mom on this pretty soon. I feel the need to say, "Dude, what the fuck?" to this. In my life, autism has not harmed me in any frickin' way. Most of the autism-related harm in my life has been caused by Autism Speaks and other curebie organizations spreading hate so horrible and widespread that I was in the closet until I was a teenager. I am not going to passively sit there while they spread their hate around. Does anyone know any e-mail addresses we can send complaints to?

  12. You know sommat though, they won't win.

    I don't know whether you have seen the "something about us" video, but that shines in every way, and whatever autism speaks does, Bob and Suzannah Wright had to sit through and watch that video and they dared not say anything against it, now that is media power.

  13. SBWG,


  14. Thank you, KWombles! I am so going to send a complaint to those bastards!

  15. "Why must they be this loud charity standing on a mountain screaming at the top of their lungs? Drowning out people with a different perspective?"

    While I do not agree with the message of Autism Speaks and do not justify their behavior, I do understand them at least in an abstract sense.

    My introduction to autism was through my children. Only through them did I discover that traits that I have less prominently than they exhibit are traits associated with autism. Because I already saw something of myself in my children, the idea of acceptance and accommodation came naturally to me.

    However, not all parents of autistic children exhibit these traits or recognize them in themselves even if they do exhibit them. Of these parents, some are well-connected and have considerable resources. They create the demand for organizations like Autism Speaks. They have or make connections to supply the funding. Other parents, less adamant about the pursuit of normality but also subject to persuasion, fall into line. Further, researchers and medical practitioners are more prone to look for what's wrong with people instead of seeing what's right with them. Between these two forces, organizations like Autism Speaks are born and are funded and insulated from criticism.

    As long as the demand from the parents is there, then the supply will exist -- unless sufficient people can influence the people in power to affect legislation and public mores that would then make the demand-supply relationship intolerable.

    However, that's difficult to do, as evidenced by the slow changes in society's perceptions of and actions towards gays and lesbians. For them, even after significant changes have been made in public perception, the demand-supply relationship continues.

    Again, this is not meant to justify Autism Speaks. It is unlikely that most of the people in that organization are motivated by hate. Most are likely motivated by a myopic perception of autism, and the belief that they are genuinely doing good -- i.e. they are misinformed. The parents who create the demand that Autism Speaks are also not likely to be motivated by hate, but are more likely to be motivated by fear which can transform into some very hate-like actions.

  16. You can't 'support Autism' and also eugenics at the same time...apparently Autism Speaks will never know the difference.

    Bravo Bev... you rock.

  17. Stephanie,

    Thank you for the thoughtful comment. I agree with much of what you have written. I understand that most AS supporters are not hateful people.

    On the other hand, I am certain that those in power are aware that they are being grossly offensive toward autistic people. This is less important, and the very real consequences of promoting these lies are less important to them than the pipe dream of eliminating autism.

    Part of the problem is that they, those in power, the Wrights and others, get away with trash like this on the backs of people who are trying to do the right thing but are poorly informed. Those who promote the hate then hide behind the sincere do-gooders who defend the organization with impunity.

    So the question is how to reach the sincere and help them understand why pity is not productive or even tolerable. Which is why I usually try not to get too mean here. I try not to let bitterness win. Sometimes I cross that line, out of frustration, from having to say the same things over and over, from hearing the same stale excuses. But I know that is not the way to reach the most people. As you say, many just don't know a better way.

    The leaders at AutSpeaks are not in that category. They are devoid of human decency, claiming to speak for those they refuse even to listen to.

  18. The Wrights are definately a part of and a product of the "Me" society, it's not just that they do not concern themselves about our sensibilities they don't care much about the sensibilities of established and hard working organisations either in there somewhat rude and inconsiderate (and often untruthful) struggle to push themselves to the front of the queu.

    There is an old saying that when you are climbing the ladder of success you do not urinate on the person struggling up the ladder behind you, because you might meet them again on the way down.

    Autism Speaks seem to have very weak bladders in this respect and are making few real friends, they will eventually find that money cannot buy them everything they want, because what they desire simply is not reasonable or even rational.

  19. I agree with most of what Stephanie says and I think her analysis of the forces that enable organizations like "Autism Speaks" to exist are probably pretty much on the mark. I suspect similar forces are at work that enable the MDA to not only to use Jerry Lewis to continue his "pity pitch" year after but also continue to raise millions of dollars out of it.

    I also agree with parts of what Bev says in response. Or at least I think I do, I have a headache and am having trouble thinking straight tonight.

    To add another layer of complexity, I think another factor at work in all this is that many people do not grasp just how destructive pity truly is. Many who have not themselves been subjected to significant, on-going pity quite honestly & sincerely believe pity is more or less the same as sympathy, empathy, or compassion. They see pity as a benign sentiment, or even positive. They think pity is the opposite of hatred because, after all, pity makes people "want to help." And what can possibly be wrong with wanting to help?

    Many people seem to have a lot of trouble grasping the concepts that

    1. Just because a person sincerely MEANS to help, WANTS to help, and is genuinely TRYING to help doesn't mean that their "help" actually helps.

    2. Help for the wrong reasons can sometimes be so demeaning to the recipient that it washes out whatever genuine "benefit" might result from the attempted "help"

    3. Pity robs the target of dignity. Anyone who thinks this doesn't matter probably has never been robbed of their dignity. Dignity can be as vital to the human soul as water is to the body. And I'm not sure this can really be grasped until you've been robbed of it. Dignity is so basic I think most of us take it for granted until we’re deprived of it.

    4. Pity, as opposed to actual compassion or empathy lends itself more easily to stereotypes, including those that can lead people to make choices with harmful consequences for people with disabilities. For example, if you assume that a person is completely incapable of doing anything whatsoever and pity them for it, then of course you're not going to trust them with a responsible job. That has harmful economic consequences. You might not trust them to make important medical decisions on their own behalf. That may lead to taking steps to ensure that someone else has the power to force medical treatments on them that they don't want, or withhold ones they do. And so forth.

    But for most people who have not experienced these harmful effects at first hand, and not been in a position to actually SEE pity leading directly to these consequences, these connections seem very abstract, remote, even preposterous. How can Autism Speaks lead to unemployment? The chain of reasoning has far too many “if then” and “when then” clauses in it, how can they be proven in a logical manner to someone who hasn’t any empirical experience of it?

    Their honest, sincere inability to see how insidious pity truly is leads many people to genuinely believe that the objection we have to "pity" is an issue of hurt feelings. So many people are simply left very confused about why this issue of "hurt feelings" should stir up so much passion. ESPECIALLY when they see the issue in life and death terms (Jerry’s kids) or in terms of a “stolen life” (Autism Speaks). Surely (so they think) saving lives is more important than protecting feelings, yes?

    I hope this comment has made some modicum of sense. I fear I have babbled on far too long. Sorry, I'm having extra trouble tonight getting my thoughts in order.

  20. I hope it's clear I'm not in any way defending Autism Speaks either (or Jerry Lewis for that matter). Just attempting, in the same way Stephanie has attempted, to analyze one component of the forces that enable them to succeed, or that enable people to rationalize the "need" to override what some people may genuinely believe is just a minority fringe group reaction.

  21. Bev,

    Thank you for your response.

    "On the other hand, I am certain that those in power are aware that they are being grossly offensive toward autistic people."

    I cannot say. People tend to filter out what they don't want to hear. They very well may understand exactly what they're doing and they may have very sinister motives, but they may also be so utterly convinced of their own opinions that they are completely unaware of the real harm they are doing. Either way those in power are most likely unreachable -- in the sense that any of us could convince them to stop.

    However, the people who support them, who may be reachable, are going to be alienated by those who villify them. Whether or not they are villains, we don't really know what's going on inside their heads. Claiming to know damages our own credibility and vicariously the credibility of the neurodiversity movement. It's an understandable reaction, but not beneficial.

    "So the question is how to reach the sincere and help them understand why pity is not productive or even tolerable. Which is why I usually try not to get too mean here. I try not to let bitterness win."

    That is definitely the preferred strategy. There are people whose minds are not made up, who turn to organizations that promote cure because they are not aware there are other choices. The stronger the neurodiversity movement becomes, the fewer those people are, but they're still out there. But the venom of some of the discussions that goes on is a big turn off for a lot of those people, especially some of the parents.

    What Autism Speaks is doing is intolerable, and it should not be tolerated. The movement against them is impressive, and it is positive. It helps reach those who aren't already convinced Autism Speaks is wrong. But some of the comments and posts I've seen are down-right hateful. That defeats the purpose. It's understandable, but counter-productive. It alienates anyone who isn't already a believer.

  22. Andrea S.,

    "To add another layer of complexity, I think another factor at work in all this is that many people do not grasp just how destructive pity truly is."

    I would certainly agree with that. I get the pity-response all the time when I tell people I have three children with autism. The best defense I've ever found is to tell them, "The hardest thing about having three children with autism is all the paperwork." Their eyes get very big, but it gives me the opportunity to explain that autism is not the problem. Having to jump through hoops because my children have atypical needs not readily met by our social constructs is the problem. It makes the notion of neurodiversity much easier to understand for people who haven't been immersed in it, and it also sloughs off their pity like so much rain on my shoulders.

    And Autism Speaks surely plays on the pity "owed" to traumatized parents, but also fails to address the trauma. That's a personal motivation for me in speaking out. The trauma some parents experience is very real. And there are many different individuals and organizations that are feeding on that trauma like parasites, reinforcing that trauma, and affirming autism as the cause of the trauma.

    But autism is not the cause of the trauma. The cause of the trauma is the same social forces that makes being neurologically different so difficult. Some people are so trained to give in to those forces, they are not equipped to handle having an autistic child. They try to love the child and hate the autism, not realizing the harm they are inflicting on their child. I desperately want to help those parents, both for the sake of the children and the sake of the parents. Organizations like Autism Speaks just preys on them.

  23. As a NT, I'm not especially keen on 'Autism Speaks', but I think these posters have pretty obscured meanings.


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