2/25/2010

Oh, AoA, you, with the trolls, sheoples, and the whole denying thing.

A fly-by post, if you will, as I head off to bed. I hate to admit it, but I now find the antics of AoA more sadly amusing than anger-stirring. I wrote earlier this week about assessing the state of rationality of one's opponents and adversaries and deciding just how much time and attention they really warranted.

AoA can no longer be taken seriously (not that they ever had much going for them, but whatever cache they had is squandered). In their short three year history, they've become laughable. Today cemented it. Anne Dachel calls Roy Grinker an "autism denialist." Stagliano, never one to stand by in the wings and let someone steal her limelight, had to chime in tonight with a note that McCarthy's portrayal in Time was being covered at HuffPo: "They've just posted about it there and as you can imagine, it will soon be a Trollfest of vaccine injury and treatment deniers."

Let me, on behalf of all those the AoAers love to hate, be the first to say: you've outfonzed the Fonz and continue to jump that shark on a near daily basis.

I could never talk about AoA again and still stand daily as a counter to them, as do the hundreds of autistic bloggers and parent bloggers who choose rationality over emotionalism, science over woo, and acceptance over eradication.**for those who are are overly literal: acceptance of the autistic neurotype over the eradication of the autistic neurotype**

Also a note to Jonathan: you must not have read enough parents who have ACTUALLY written that death is preferable. That they wished their child had died. That would rather risk death than deal with autism. It runs the gamut at AoA (and on the biomed forums), from well-intentioned but loving and misguided parents to munchausen-by-proxy parents who want the attention for themselves and will put their kids through all sorts of the unnecessary and dangerous treatments in order to remain in the limelight, to hystrionic parents who actually state these things. Thank you for visiting.

....


I believe there are many parents who are desperate to help their children live better lives. I'm not referring to those parents. The folks running the show at AoA, the ring-leaders and their top commenters: I believe they love their children every bit as much as I love mine. I believe, however, that they see their children as less than, damaged goods who need to be recovered at all costs, whatever those costs be. Their emphasis is on gaining a child of their own imagination and making rather than in seeing the children they have and helping their actual children achieve their potential. I think these parents don't think about how their actions will be perceived or received by their children, how their actions can psychologically destroy their children.

There's a reason the saying "The road to hell is paved with good intentions." Parents do all manner of abusive, neglectful things to their children in the name of good intentions. It's an entirely inadequate excuse. "But I meant well!" Emotionalism rather than rationalism. Rationalization rather than objective assessment of the situation. Self-justification so that they can escape cogntive dissonance.

16 comments:

jonathan said...

acceptance over eradication? So you really think these people want to destroy their own children rather than trying to have them lead better lives, even if their intentions are misguided, you should conceive they are well-intended.

KWombles said...

Posted in the blog itself, as well:

**for those who are are overly literal: acceptance of the autistic neurotype over the eradication of the autistic neurotype**



Also a note to Jonathan: you must not have read enough parents who have ACTUALLY written that death is preferable. That they wished their child had died. That would rather risk death than deal with autism. It runs the gamut at AoA (and on the biomed forums), from well-intentioned but loving and misguided parents to munchausen-by-proxy parents who want the attention for themselves and will put their kids through all sorts of the unnecessary and dangerous treatments in order to remain in the limelight, to hystrionic parents who actually state these things. Thank you for visiting.


....
I believe there are many parents who are desperate to help their children live better lives. I'm not referring to those parents. The folks running the show at AoA, the ring-leaders and their top commenters: I believe they love their children every bit as much as I love mine. I believe, however, that they see their children as less than, damaged goods who need to be recovered at all costs, whatever those costs be. Their emphasis is on gaining a child of their own imagination and making rather than in seeing the children they have and helping their actual children achieve their potential. I think these parents don't think about how their actions will be perceived or received by their children, how their actions can psychologically destroy their children.


There's a reason the saying "The road to hell is paved with good intentions." Parents do all manner of abusive, neglectful things to their children in the name of good intentions. It's an entirely inadequate excuse. "But I meant well!" Emotionalism rather than rationalism. Rationalization rather than objective assessment of the situation. Self-justification so that they can escape cogntive dissonance.

jonathan said...

Actually Kim, no, with the possible exception of John Best who may have made a sort of half assed statement to that effect probably just to goad you and other ND's, I have never as far as I can recall reading a parent ever saying they preferred their children were dead than being autistic. I wish you would post or link to some examples of this as I am rather skeptical that they actually exist.

Sadderbutwisergirl said...

In Autism Every Day, Alison Singer says that she was contemplating driving herself and her autistic child off a bridge, but only refrained from doing so because she didn't want to deprive her non-autistic child of a parent. I also know people personally who say that if they could find out if their fetus would turn out autistic, they would readily abort it. Some have even said to me that they would rather be dead than be autistic.

KWombles said...

Jonathan, you don't get out enough, then.

http://stanford.wellsphere.com/autism-autism-spectrum-article/the-vaccination-question/514280

http://stanford.wellsphere.com/autism-autism-spectrum-article/the-vaccination-question/514280

http://www.autistics.org/library/whatis.html --not brought up by parents directly here, but obviously raised enough to be addressed.

http://www.amazon.com/gp/aw/cr/0449906647/n=17/s=rd/f=/ref=aw_cr_i_17 criticism of a book Let Me Hear Your Voice.

http://www.neurodiversity.com/response_to_my_name_is_autism.html

http://www.child-autism-parent-cafe.com/my-name-is-autism.html

http://www.mndaily.com/2009/12/09/autism-%E2%80%98cure%E2%80%99-understanding-5

http://www.blisstree.com/articles/autism-and-cancer/

http://www.ageofautism.com/2009/07/autism-perception-a-bump-in-the-road.html conveys the idea that autism has rendered the child dead: "She is dead. That Eve is dead, and I don’t care if people hate me for saying that because that’s how I feel and that’s how I will always feel and there is no closure and there is no comfort just because she can talk now. I want that Eve back! I want THAT Eve! I want to know who she was, damn it! I want to know who she could have been! Who she SHOULD have been! I want to know what she would have said as a toddler and if she would be an amazing athlete like her father and if she was funny or witty or serious and so much more. I want to know how our family would have been different and how my marriage would have been different. I want to know how my life would have been different."
--While not quite the whole dead is preferrable thing, conveys the depth to which some parents fall.


http://www.reuters.com/article/pressRelease/idUS106778+08-Sep-2009+PRN20090908?sp=true

http://demonized.autistics.org/?cat=18

http://www.patriciaebauer.com/2009/09/14/columnist-vaccinations-autism-22373/

http://leftbrainrightbrain.co.uk/2008/09/better-dead-than-autistic-2/

Several of my first interactions at Huffington Post involved parents expressing their belief that risking death was preferable to risking their child have autism, that outright. Yes, those willing to express the idea outight that a dead child would be preferable to an autistic one are thankfully few, but they are indeed there, if you read the comments at AoA, if you read the autism related Huff Posts, and some of the forums.

Others wish their child had cancer instead, also a death wish, instead of autism: you either get better or you die, right, with cancer? One of the other, as long as it isn't autism.

However, this was not the point of my post and you misinterpreted the acceptance not eradication of autism to be eradication of the autistic, which I find more than a tad interesting considering you believe autism to not be an integral part of you. These parents believe autism is not integral to the child; the child has been damaged, had this done to them.

Pleasant Miss A said...

Ha Ha. Jonathan got link-bombed.

KWombles said...

Why, yes, yes he did get link-bombed. :-) I could have kept going, but I have other more pressing matters than hammering my point into the ground and then some. It's not hard to find the stuff. Go back to Huff's autism posts by Stagliano, Kirby, Gordon, Carrey, and others by those on the science side and they're all but a dime or dozen. I've already waded there, some of my first posts over at Detritus and here deal with hystrionic parents who think that risking their child's life out of a misguided fear of getting autism is acceptable Russian roulette. It's not. It's flat out stupid. :-)

Cube Angel said...

http://ultimatesuperset.blogspot.com/2010/02/submission-humility-and-blaming-others.html

Kim

I have another link. On my blog, I could be wrong about all of the things I am saying. Everyone of my thoughts could be wrong as well. I do not know.

Cube Angel said...

I can say this to all sides of this debate including our side. Metaphorically, the trees will eventually bear fruit either way no matter who is right and no matter who is wrong. Reality will be the final determiner of who is right and who is wrong and which fruit will come out strong and sweet.

Clay said...

"Jonathan, you don't get out enough, then."

KWombles, are you sure not actually British? That's gotta be the understatement of the century, even by their standards.

Jonathan doesn't get out much, because the neighbors on one side have a Pekingese, and on the other side, a poodle. They're old now, but they've taught Jonboy to stay the hell away from their territory.

Clay said...
This comment has been removed by the author.
Clay said...

PS. It would be nice if Jon's mum would let him have his own dog, so he could have someone to love and accept him no matter how much of a schlub he is.

I mean that, Jonathan, I wish you love. Cocker spaniels are nice.

Sullivan said...

"I also know people personally who say that if they could find out if their fetus would turn out autistic, they would readily abort it"

Saderbutwisergirl--

I've heard that one mother in a study at MIND did abort when she heard that she tested positive for the fetal brain antibodies--even though there isn't enough data yet to say that these are causal for autism.

It happens. It will happen as better tests become available.

It is aweful.

Sullivan said...

Kim,

for a media editor (or whatever her self-appointed title is), Anne Dachel is pretty poor at reading and understanding the media.

Dr. Grinker's daughter has an autism diagnosis. Pretty clear in everything he writes, including his Op-Ed piece.

Does that matter? I think not. Asperger syndrome is a disability. Asperger syndrome *is* autism.

phoenixwoman said...

Wow, I wonder where Jonathan went? Heh.

Rule #1: Do not mess with KWombles.
Rule #2: DO NOT mess with KWombles.
Rule #3: If someone yells "Stop!", goes limp, or taps out, the fight is over.

Benjamin X said...

I've met Dr. Grinker, he's a genuinely nice person and a brilliant anthropologist.