9/23/2009

Autism Speaks Should Learn When to Shut the Hell Up: I am Autism. Not.

It's all over the blogosphere. If you read autism blogs, I'm not sure you could miss it, even if you do what you can to actually avoid some of the sites, forum, and organizations that focus on fringe elements in the autism community. I pick my poisons fairly selectively: how much bad crap can I handle in a given day, and pretty much that's whatever Huff has on autism related and AoA. Any more than that, and I have hit maximum capacity. Oh, I'll stray over to some of the woo-sies' websites to see what they're doing, what they're bitching about, but usually I stay within a more positive blogosphere relating to parents of autistic children or to blogs by and for autistics.

So, I was doing my early morning round of blogs; I hit AoA and growled to see the puppy's part 2 on the Science Blogs. Then I hit LBRB and seriously got my fun meter pegged out. Between Mary's martyrdom and what can only be a Munchausen-by-proxy like need to subject her child to a daunting list of "treatments" and the unbelievably offensive Autism Speaks  announcement, I was fired up and ready to go, with no time to get there. I fired off a quick email to Autism Speaks, though, to signal my intense disgust with the PSA and I encourage all readers, regardless of where you fall on the woometer, to do the same. Because if you think this video was okay, as I suspect some intense die-hard AoA fans will, you are seriously troubled.

The video is here, as well as embedded at several blogs: http://www.autismspeaks.org/press/united_nations_world_focus_on_autism_2009.php

The email address for Autism Speaks is contactus@autismspeaks.org.

I don't know if it was intentional that Autism Speaks was trying to signal they are all about the warrior parents; this PSA makes it look like they are all about the martyr parents, because you know those parents will spend every dime, will do whatever they can, to "fix" their child. This isn't about autism awareness or it would have been done from the autistic's perspective and not the selfish, self-centered, inconvenienced, lazy martyr parents who are so incredibly disappointed that they didn't get the trouble-free, work-free trophy kid they were expecting. I'm not kidding, and I am not a bit sorry if that's harsh. I don't think that's all parents, I don't think that's most parents, but it is some parents. The loudest, whiney-est, why-me-God-dest, I have it worse than everyone, look-what-I've-had-to-sacrifice sorry sacks I have ever had the misfortune to read. By gosh, if I were Thelma or Louise, and I had the misfortune of being in the same room with one of these parents who see autism as an anthropomorphisized monster that has ruined their lives, I do believe I would use the big purses T and L carry with them and whack those sorry assed parents upside the head. I might hug them, because no doubt they are hurting, but I would tough love them back into reality with a swift swing of the mighty purse.

39 comments:

Corina Becker said...

excuse me, I have an angry email to write.


and Kim, you'd like my purse. I carry a volume of the Oxford English Dictionary in it, perfect for swatting parents upside the head. Turns out, words can hurt you.

KWombles said...

Corina,

First really good laugh I've had today in conjunction with all this. :-) I love that: words can hurt, especially when you're purse is weighted with books. :-) I like the idea of it being a dictionary.

Hey, between all of us, I bet we've got some heavy purses. Mine is an easy 10 pounds. :-)

NightStorm The Aspiewolf said...

My blog has my response to the whole thing. I can't link it for some reason.

This whole thing is honestly typical, and just another reason to hate AutSpks. I am sure the curequeens will be ALLL over this like flies on shit.

One thing I notice is that, in the images with the autists not one of them is throwing a meltdown, they all seem happy or calm. What's up with that?

Corina Becker said...
This comment has been removed by the author.
davidbrown said...

As I commented on LBRB, the tone in which autism is portrayed is like an urban legend/parody about the "Bad Times" computer virus. Line left out in some versions: "It will replace your shampoo with Nair and your Nair with Rogaine."
Also, back in Jr. High, I nicknamed my backpack "the Anchor". I carried all my books in it rather than using the locker, so it was quite heavy, and pretty formidable for offensive and defensive use.

Corina Becker said...

**facepalm** excuse the deletion. I got NightStorm mixed up with Clay, and posted the wrong response. ... or maybe I didn't. either way:

@NightStorm, yeah, that's the weird part. All the parents sent in fairly happy footage, and look at what a voice over and music can do to vilify something.

@Kim, it's been a joke in the English world. At least, in my group of English Major friends. The pen may be mightier than the sword, but words don't really hurt unless you throw them.

I have no clue how much my purse weighs. Hell, screw the purse, I'll fill my backpack full of textbooks and swing that. Maybe some of the knowledge in the books will fall into their brains.

Oh wow, that was angry. But I don't think AoA can piss me off as much as AutSpks does.

Chromesthesia said...

I took out my batteries I was keeping, so my backpack isn't as heavy as it used to be unless I'm taking back 20 books to the library like I was the other day.
I've posted all over about how TIRED I am of Autism Speaks or Autism Speaks not Really Listening to Autism and Just Making it Out to be Miserable, Evil, Sad and Hopeless.
The kids looked rather sweet in the video too and the adults, just living their lives with that stupid voice over going on and on as if autism is this evil boogeyman. They don't seem to understand that groups like them are part of the problem. They do not put out the message of empathy and compassion, but fear and pity, and how does that help autistic people?
We need to scream louder than them some how.

kathleen said...

I have to tell you the entire thing didn't make sense to me...so first we have ominous autism..and then we have warrior families? Voo- doo? herbs? Tearing down brick walls? WTF??? This is the crap that leads people to wooville-
@ chromesthesia-you hit the nail on the head...groups like them are part of the problem-and it appears that they don't see it that way..
So my question to everyone is-what do we do?

lurker said...

"I do believe I would use the big purses T and L carry with them and whack those sorry assed parents upside the head" I'm nearly amazed that this is what you are really like. Well, you can't stop me from refuting your snot on my blog.

KWombles said...

Oh grow up, Lurker. You're nearly amazed? Awww, thanks for writing about me, I'm just thrilled to death. :-)

Not a phony, or were you not paying attention? I reckon you'd be the first to get the purse swing, but I doubt you'd get the hug.

KWombles said...

Oh, man, and I was your second blog post? I am so honored. As Thelma and Louise have so aptly noted, you are a dumbass.

And I'm pretty sure there are few people in the blogosphere who would consider you their friends. Hey, maybe Best, right?

Mom26children said...

Kim,
I was just going to call you and let you know that lurker thought he had the "Best" of you....but, I see you caught on..
I should never question your intelligence.

About Autism Speaks....they are really going to regret doing this video, I believe.
I have no words to say right now...they have stepped on all ten of my very sensitive toes.

Roger Kulp said...

Go read this if you haven't already,
http://www.autismspeaks.org/community/ownwords/intheirownwords.php

It's filled with heartwarming stories from parents and teenagers,about what a great thing autism is,and why it's a bad thing to want to cure it.

Autism Speaks isn't "about" anything.They want to be all things to all people.That is why Autism Speaks is a big fat joke.The trouble is only the anti-ND bloggers will talk about AS when they do something they don't like,they don't praise them when they run ND friendly stuff on their site,or write out big fat checks to ND types like Laurent Mottron.At least Generation Rescue and ASAN have picked a position and stuck to it.

Great video BTW.Autism sucks.

Thelma said...

Godamighty, Roger, done been wonderin where ya got yaself to, an here ya is. Reckon autism is not ya main problem, hun. Hard ta believe that someone could hate himself as much as ya appear ta hate yourself. Next ta Lurker, that is.

Chromesthesia said...

That video makes me cringe! The poem is terrible for one thing. The images of autistic people doing their own thing over that inaccurate voice spouting out such stuff!
AUGH!
All you need is for that anti-gay marriage group to get ideas from something like that. I got to wonder if there's a conspiracy to annoy me out there.

NightStorm The Aspiewolf said...

Roger you should seriously seek a proper therapist to deal with your self hate and self-esteem you make a poor role model to younger autists out there.

I admit Autism does suck once in a while, but I don't turn into a scapegoat for my own problems. I learn to deal with them with responsibility and try to self-manage a lot of destructive and painful behaviors. Right now I am out of medication, and I am figuring out how to get enough sleep tonight since I have insomnia.

Roger Kulp said...

As for Best,have you noticed nobody comments at his blog anymore.
Same stuff over and over again.

Chromesthesia said...

Well, we agree there.
That guy is extremely annoying, and quite rude.
Intelligent discourse is needed.

Thelma said...

Roger, ya done come back and commented again, first time I reckon I've seen ya do that! That's wonderful! Ya are conversatin!

Corina Becker said...

Awwww, Kim, Lurker posted his second post about you? That's so sweet of him! and oh look! He even mentioned me!!! That's so ADORABLE!!



And Roger, welcome to the conversation. See, not so scary after all, huh?

KWombles said...

Aren't we lucky, Corina?

Roger, glad to see you've come back and posted again. :-)

Dawncnm said...

My, my, Kim. You really upset poor Lurker. Shame on you. You drove the poor poor into using all kinds of foul language AND calling you and Corina names.

OK. Enough snark. I tried to watch the AS video and turned it off. Can't stomach it. As was pointed out above, why, if all the pictures seem to be of calm and happy children, are all the voiceovers talking about how horrible autism is?

We all have hopes and goals for our children. Sometimes life gets in the way. My sibling was a brilliant person, living independently with a great job, until the day xe was in a car accident and had a severe head injury. Now the goal is for xe to be able to dress xemself alone. Life got in the way. My parents are coping but this is not what they had planned for sibling.

a little OT: Nightstorm: hope you found something to help you sleep since you are out of medication. Insomnia sucks, I know. I'm fortunate enough to have meds for the times I can't sleep. If I am away and don't have my meds, I can luckily take the OTC meds to help me fall asleep.

NightStorm The Aspiewolf said...

a little OT: Nightstorm: hope you found something to help you sleep since you are out of medication. Insomnia sucks, I know. I'm fortunate enough to have meds for the times I can't sleep. If I am away and don't have my meds, I can luckily take the OTC meds to help me fall asleep

I took meletoin and a night time pain relief pill. Insomina is one of those lovely reprocussions of being Aspie, you learn get with it. I am gonna fill out my perscription this afternoon anyway :3

Chromesthesia said...

Hmm. I wonder if this explains why I can't go to bed at a "normal" time like 10 or 11 and instead have to go to bed at 2 or 3 am and even when I'm tired then, it still takes a long time to go to bed.

So If i am working, I have to take tylenol sleep to get to bed at 11 at least.
What a pain.
And it's a bit OT as well. Or perhaps I am just a night person

On topic, I continue to be annoyed about that stupid video and its terrible poem.
Get on my nerves.

Clay said...

Well, I'm delighted that the creepy Lurker finally found himself something constructive to do, (if you can call that 'constructive'). Maybe someone will take the notion to 'troll' him, put the smelly shoe on the other foot, so to speak. Me, I don't think I'll bother, I've wasted enough time with him.

Corina Becker said...

heh, indeed Kim. He seems to be unable to realize the difference between wanting to do something and actually doing it. For example, I have yet to meet someone who has not thought about doing something that they know they shouldn't do, yet, none of them do it.

and for the record, I documented what he said about me.

Sullivan said...

"and Kim, you'd like my purse. I carry a volume of the Oxford English Dictionary in it, perfect for swatting parents upside the head. Turns out, words can hurt you."

That is one of the funniest things I've read in a long time!

Corina Becker said...

@Sullivan **does a little curtsy** why, thank you. Glad to have contributed a laugh to the world.

Roger Kulp said...

Equating hating the suffering autism has caused in your life with hating yourself is a classic neurodiversity ploy.My autism is one of several diseases I have.My autism is not me.Anybody whose life is so meaningless that they claim their autism is themself is only to be pitied.

KWombles said...

Since autism appears to be an indelible part of the hardwiring of your brain, it may not be the entirety of you, but it is a fundamental part of you. Of course, you'd have to acknowledge that definition, wouldn't you?

It doesn't even appear to be a malfunctioning of the brain, but actual differences in the amounts of neurons in specific regions of the brain. It also appears that autistics may have more neurons overall than the neurotypical controls.

By rejecting a fundamental part of yourself, you cause yourself more pain than you have to have. You increase your suffering. It is unnecessary.

And then you misinterpret the suggestions that neurodiversity is about seeing the value in all of us to mean doing nothing to improve the lives of people who suffer.

Roger, we all have issues. When society places a negative value on a subset of the population whose issues make it difficult for them to navigate in society, it demeans the value of human life. Neurodiversity seeks to promote acceptance and assistance, with a goal of changing society to make it easier for those with differences to navigate, to function.

Even though I consider a great deal of what you say to be boorish at best, being a philosophical proponent of neurodiverity (the way I've defined it, not your horendous twisting of it)means I see your value as a human being as equal to mine. I do not cast you in the outgroup. I wish you well, and if conversation and a place to leave your often boorish comments leaves you feeling better, I am happy to have you here. If I ever believe your intent is to deliberately and intentionally be malicious, like Lurker, you won't be. I don't suspect that will be a problem, though.

Chromesthesia said...

Wow. What an evil ploy... acceptance and assistance. Seeing the value of all people...

For shame.

Kdding aside, my synesthesia is a part of me. If I have aspergers, which I suspect I do, that's a part of how I view the world. A part of how I see things.
Other folks' perspectives are very interesting.

jonathan said...

I'm still waiting for anyone in ND besides Alan Griswold to criticize laurent mottron for receiving money from AS. Nothing wrong with AS if they give money to someone you like and nothing wrong with them accepting it.

I am still waiting for a single ND to urge Michelle Dawson to resign from the Mottron group in protest. Seems not even Mr. Griswold wants to go there.

Anonymous said...

The idea that behavioural and neuropsychological characteristics are 'not part of the person' when they are atypical is a curious one.

Typical displays of such characteristics are seen as being part of that persons identity, as effecting their roles, and are taken as defining thier personality.

To claim that 'autism is not part of the person' is to disposses people with autism of the right to lay claim to characteristics which are otherwise implicitly assumed to belong to and define the person. This is an especially curious claim, given that autism is defined by repeated patterns of behaviour.

I for one fail to see why I should be dispossessed of the right to say 'I have this condition because this I am this way'.

Anyone who thinks this is about having a disability and solely defining oneself accordingly has one hell of a lot of catching up to do.

- Dedj

KWombles said...

Jonathan,

I had no idea you read my blog. It's nice to see you here. How would you like me to say it, here in the comments or do you think it merits a post of it's own?

Could it be that your issues with Dawson and Mottron color your perception of what NDs in general write about? Has it occurred to you that the autism research field is incredibly vast and that it's possible that Mottron and Dawson may not loom large on some people's radar? Or who they take funding from?

I don't like what Autism Speaks has done here with this announcement. For the most part I ignore the organization; I certainly ignore its forum. I ignore the autism walk, as well.

At this point, if I were a researcher with a basic interest in human rights, I would not take funding from AS without a complete retraction and a public apology announcement.


And what, if I am an ND, that makes you anti-ND? We've got to sort ourselves into two distinct and separate groups whether we feel we fit into your rigidly ascribed group roles? Come on, Jonathan, for a minute break out of this need to assign people as either yes or no. It's an unnecessary rigidity.

You want to be happier, more successful, less impaired. Who could argue with that? I want my children to achieve their potentials, to be happy and healthy. I've watched as you've butchered and maligned the concept of neurodiversity as a respect for the innate dignity and value for all human life and twisted it into something completely unrecognizable. And you've often done this at the side of some really unpleasant people. And I have to wonder, how's that working for you, Jonathan? What kind of support system has that created for you? What kind of close relationships has it helped you to build?

And don't tell me you can't form close relationships because you're autistic. I have close friendships with many autistic adults. I have close relationships with my chilren, who are on the spectrum. It isn't autism that stands in the way of caring about others and finding ways to communicate with them. You and Roger's biggest problems are not autism. Not by half.

That said, you are welcome here, as is Roger, as I do not see intentional maliciousness in your posts. And as long as I don't, I am delighted to engage in coversations with you.

And Lurker, anytime he decides to get his act straight and really wants to chat, is welcome to try again. I have to assume half his problem is loneliness. I'm going to be charitable anyway and figure it is.

So, Jonathan, was that adequately said for you regarding taking money from AS?

Anonymous said...

Okay then. Seeing as JM wants to ruin yet another good thread by bringing up something that only he thinks is relevant, I will say this:

Laurent Mottron should be more careful when accepting funds for his positively worded and potentially pro-ND work.

LM got funded for doing work that is potentially a big score for 'our side', and he managed to get it from the very people many in the ND movement would like to see a big change in. LM getting funded by them could be a very promising sign of positive change.

It's very odd to say that AS must have nothing wrong with them because it gave money to one of the 'good guys', as well as being unsupported by logic. The implicit idea that 'the nds' somehow 'must' criticise LM for this is also very odd given how positive his research appears to be.

Whereas one could criticise LM for his involvment with them, one could also regard it as 'one of us' getting his foot in the door.

Some of you people get some really strange out-there ideas.

-Dedj

Anonymous said...

Indeed, I had no idea who Mottron was, until he was mentioned by Harold as 'ND icon'. He was always portrayed as a colleague of sorts to Michelle Dawson.

I'd never heard him mentioned during any ND-friendly conference, blogpost, podcast, mail-shot, email or in conversation, unless it was a reference to his work. This includes whilst working in an ND-aware autism service and a charity that has several prominent 'ND' members in it's hierachy.

The idea that the whole ND-world 'should' be aware of him enough to criticise him isn't supported by his actual fame within it. I'd bet most people hadn't heard of him, except as a researcher.

-Dedj

jonathan said...

Kim, Thanks for the civil response. You don't need to devote an entire post about me but nice of you to offer. You are correct that Dawson's and Mottron's lack of scruples and morals in accepting funding from AS is probably not on the radar of most. It should be though, regardless of what side of the debate they are on and this is why I try to bring it to attention.

I don't believe I have misrepresented ND. ND is not about human rights and dignity. If it were, you would not laugh at the jokes that Clay Adams makes at my expense and the vicious insults he makes towards my parents on various blogs, becuase the man has such a massive chip on his shoulder and he is so jealous that he did not have devoted or supportive parents growing up. This is not to mention the very nasty and abusive comments your friend constanlty tries to post on my blog under assumed aliases. I have also received hate and personal attacks from others. ND is not about human rights, it is saying that autistic people are just fine the way they are and should not be cured if a cure were available. Or that AS should not fund research that will help autistic people overcome their problems.

I guess you are alluding to John Best. I agree his behavior is not appropriate, but I can understand where he is coming from as a father of a severely autistic child who has to constantly read posts by ND's trivializing his son's very serious disability.

I can relate to some persons, but I unlike yourself, I can't make a living (at least not anymore) get married or have a family.

If you saw the ND counterpart to the AS video, i.e. no myths video starring Ari Ne'eman you will see it is nothing about human rights, but only about propaganda claiming autistics are just fine they way they are. I believe this is harmful.

I hope this answers your question and though I realize Mottron and Dawson may not be on your radar and others, I believe it is an issue that should be discussed and perhaps you could condemn them for accepting money from the organization you detest so much.

KWombles said...

Jonathan,

I would respectfully submit that you take the personal animosity that you and Clay have for each other and extrapolate it out to other people. Neurodiversity is about valuing human rights. It isn't a touchy feel good everybody is nice to everybody and no one argues kind of philosophy. For example, I can hold that all people are worthy of respect and value and still think Lurker is an ass and Best is off his rocker and snake-bit mean.

I don't particularly appreciate it when you take a philosophical construction that I have carefully operationalized on several ocassions and say that I follow something else. It's annoying and its dishonest. And it's what you are doing (and Roger for that matter) when you call me ND -- you are using your definition and the contempt you heap upon that and placing it on me. And then you wonder why you have a hard time getting along with people.

I'll assume this isn't the first time you've read my blog. And if it is, I'll ask that you take the time and find some of those blogs where I specifically delineate my positions. And then I'd ask you to tell me where I fit in with your mythical, magical neurodiversity movement.

Are you suggesting that it's okay for anti-NDs to be asses and bullies, but if someone says they are ND (and I don't because I reject your definition of it) then they must be mindless tree-hugging acceptors of any and all behaviors, even those that are rude and bullying?

Jonathan, unless your behavior has been stellar, your heart warm and accepting of all, no unkindness ever shown, etc., I think perhaps you should pull the mote from out your own eye.

I can hold that the anti-vaxxing wackaloons like bensmyson have inherent value and worth and still think they are nutjobs and nasty people. Sort of that purse swinging with one hand and hugging with the other, as Thelma and Louise have written about.

Again, you are welcome here anytime. I think that if you could take the time to consider that there are more than two positions, you might be less lonely. And, god knows, I love a good conversation.

As to Clay, I am honored to call him my friend. He is incredibly clever; he has a sharp and biting wit, but he has a soft and tender heart, and I have no doubt that he would extend you a hand in friendship if you would quit casting ND as the devil that AS has cast autism as. He gives you a hard time; have you asked yourself why?

David N. Andrews M. Ed. (Distinction) said...

"I'm nearly amazed that this is what you are really like."

Lurker, we all know what like you are. A pathetic little whinger who has nothing better to do that argue that black is white. Full of crap, you are.

"Well, you can't stop me from refuting your snot on my blog."

I have never seen you manage to actually refute ANYthing yet. And when you've tried to use papers it's been obvious that you never actually read them before posting links and content of papers and abstracts. You're full of crap ... nasty, stenchy, putrifying crap.

Your blog... OMG .... you are full of crap, aren't you? And let's face it, since you're not autistic, you're not really fulfilling any real purpose by even looking in on these blogs here. Maybe someone pays you to sit on your arse and try to write pseudo-intellectual crap on people's blogs. Time for you to stop, Billy-boy: you've been long-since found out, and we know you can't refure anything... waste of space, you are, boy.

Autism Speaks, as far as I am concerned... hatemongers. If you side with them, Billy, then you are a hatemonger too.