9/29/2009

Label Me This: Autism, Neurodiversity, Vaccines and the Biomed War

Controversy and contention seem to go hand-in-hand with autism. This isn't a new thing, either. Just think shades of the refrigerator mother day, something that was still in play in the early 90s when autism entered my vocabulary. The first work I ever read on autism was Bettelheim's crap. Needless to say, I have had an abiding aversion to that man and everything he touched since then. To find out he was a fraud, well, that was icing.

Today's controversies and areas of contention regarding autism are more numerous and rankerous than I personally have witnessed since 1993-94 when the word autism came into our lives. We'd had years of experience in dealing with an autistic child, certainly, as my oldest was born in 89. And, yes, as a friend and I were discussing about our children, some come out of the womb autistic. All three of mine did, even if it took time to accurately name it and accept it. There were no controversies other than the refrigerator mom one. No hint of vaccines, no woo treatments. Nothing. There was an absence of information, an absences of practical treatment options and tremendous pessimism regarding outcomes.

Today, there are vaccines and their role in causation, the role of digestive and intestinal issues, the role of gluten and casein intolerances, mitochondrial dysfunctions, the heritability of autism and the role of environmental triggers, regressive autism versus classical autism, standard evidence-based treatment versus non-tested or non-replicated treatments, recovery versus cures, autism as auto-immune disorder, neurodiversity, and disability rights. There's more as well: are we autism parents (NO), are we an autism community, autistic community, autism culture? Let's not even get started on the warrior parents thing. Kathleen has a much better name: worrier parents.

Sigh. As if all this isn't bad enough, there's this need, at least in the online autism-related community, to delineate everyone into two groups: pro-vaccine, pro-neurodiversity, anti-biomed, anti-cure people (said labeling done by anyone belonging to any of those opposite divisions) and anti-vaxxer curebie woo-bodies (by anyone belonging to the opposing side). It is so not that simple, and if I didn't think it were offensive to many of my autistic friends who really aren't all black and white thinking (some are), I'd say it goes a long way to proving the broader autism phenotype that you have all these parents categorizing people into either/ors instead of realizing that there are probably as many positions as there are people.

Every month or so, I end up needing to repost my positions to remind the people who want to mislabel me that the labels they apply I reject. Huh. I try not to label others one-dimensionally, so it'd be nice if people critical of me would at least be critical based on what I've actually said rather than their made-up contentions. I don't care if you disagree with me, I don't care if you hate me, but for goodness sake, do it for a real frakking reason. Man, I want to earn condemnation, so at least get your reasons for it right.

(Gosh, Jonathan, Roger, hell, and Lurker, too, that's a little bit about you as well). So, for all the new readers that my best new friend decided to bring me, here again are my positions.

I posted on GFCFKids; turns out I did actually belong to one of the groups that my best new friend decided to post my information to.

I, too, am sad and disgusted that this woman could make inaccurate and

misleading accusations regarding my behavior and my intentions and then believe

that her behavior is the moral one. I do not lurk on these boards, do not belong

to them, had not heard of them until the thread at LBRB. I do not make fun of

parents and I do not mock them. I do counter misinformation regarding autism,

vaccines, and related woo.


I would welcome readers to look over the thread at LBRB and at my blog at

Countering.

While my information is readily available for any to see, her inducement to

harassment violates the law and has already resulted in one threat against me.

I don't mind criticism, and I don't mind if other's don't find me their cup of

tea, but it ought to be based on something I've really done and not on the lies

of this woman.


KWombles



I received a pleasant response from a member, and I then posted this in response:


Absolutely, I understand that; I wouldn't want my children to have educators

working with them who didn't think they could improve, couldn't make tremendous

progress, and for a small but significant portion, improvement to the point of

functioning at the same level as their neurotypical peers. I have had

psychologists tell me that autistic kids don't get better. They didn't see my

family again.


And I've been careful to acknowledge that vaccines do have adverse effects for

some, as medications do. One can hold onto epidemiological analysis that says

vaccines don't cause autism while acknowledging the personal stories of parents

whose children have had immediate adverse reactions and wind up with an autism

diagnosis. One can also hold onto the idea, based on the research, that there is

not one cause to what we label autism; there are many autisms in that there are

many causes and varying presentations.


I believe vaccination choices are personal choices that should be made based on

non-emotional, evidence based information. I don't condemn parents for choosing

not to vaccinate; I argue against not vaccinating out of unwarranted fear and

misinformation. I am all for more research into making vaccines as safe as

possible, and the posts on my blog demonstrate this repeatedly.


I believe in working hard for our children so that they can achieve their

potential while at the same time working hard to make the world more accepting

of people who are different and disabled. It is possible to conceive of autism

as both a disability for those more severely impacted as my oldest is, and as a

difference, as it would appear that it will ultimately be for my two youngest,

fingers crossed.




It's not a full statement of what my positions are, so if new readers are interested, here are some of the blogs worth reading:

http://counteringageofautism.blogspot.com/2009/08/dialogue-between-roger-kulp-and-me.html

http://counteringageofautism.blogspot.com/2009/08/damn-fools-and-mythical-magical.html

http://counteringageofautism.blogspot.com/2009/07/reflecting-on-neurons-cures-and.html


Bottom line:

Neurodiversity.

Neurodiversity is about accepting people's value and worth is independent of their functional level.

It is about working to help people be accepted and supported.

It is about helping people reach their potential.

It is not inherently anti-cure; if it exists as a movement, it would reject the terminology.

It's about making people's lives better.

Biomed.

Damn stupid name. Everything is biological or medical in nature (even if it's physically related like PT, OT, and speech, it's working to rewire the neuron connections, hence it is biological.

How about evidence-based versus woo/alternative? Better distinction. Way more accurate.

I am for evidence-based practices and minimal to no woo.

Vaccines.

Does not appear to be a cause of autism at the epidemiological level.

Really not interested in arguing with individuals on their personal narrative level.

Adverse reactions do happen.

More research should be done on making vaccines safer, and on making the safest schedule for individuals.

Autism.

Multiple causes. Multiple variations. Not autism, but autisms.

Autism Community/Autism Culture.

I am not an autism mom.

I am not autistic.

I am the loving, accepting mother to three children on the spectrum.

 I am a member of the autism/autistic culture.

I hope that we can form an overarching community where people feel valued and accepted.



UPDATE 08/05/2011 The comments below which mock Jonathan Mitchell are ones I regret I allowed to stand. Because it would be disingenuous to remove them two years laters, I will leave them stand with my apology for not acting then. Apparently, Mr. Mitchell was deeply wounded by these, and I sincerely apologize for any role I played in that hurt.

9/28/2009

Anonyomous-proxied dumbass; I got me one

Anonymous said...


"Good to have your picture and class schedule. Makes it so much easier."

Browser Mozilla Firefox 3.5.3


Operating System Windows Vista

Screen Resolution 1680x1050



IP 130.94.107.245

I don't know, you think the person would get that if I want to take the time to pursue this with the police on my end that the police on his end could show up, wouldn't you?

I've turned the anonymous off again for comments.

Hey, Jen, you get what you wanted? You posted all my stuff out there like it was a big secret and begged folks to harass me. So, you happy? Yup, you're a nice, sweet, misunderstood mom.. Keep going with that one. You can't believe I'd put out a quote from your blog, with no identifying information, asking if the troll who was posting the crazier crap was in fact the same woman who could write about growing and learning, but your reaction, that was appropriate, huh? Oooh, I am quaking in my boots.

9/27/2009

To all my new friends over at Autism-Mercury and the other anti-vaxxer sites

How thoughtful of Jen to share the information so that you could find your way here. While you are here looking around, trying to decide if I am really a cat lady, or if flowers are more an obsession, I thought I'd take the time to invite you to our forum for positive support for both autistics and parents of kids on the spectrum.

It's called Raising Autism. You can find it at http://www.raisingautism.co.nr/.

Of course, we also have our Countering AoA facebook page, same mission as RA's: http://www.facebook.com/group.php?gid=91368243169 .

You know, it's always a good idea to actually read up on the folks you want to label as crazy or despicable, etc. See if they've ever said anything as offensive as "Your right, wacko woman, I trust our bodies and God to dictate how we will naturally be killed off. It will be how it will be. That saying…the good die young…it sounds like it has some truth!" I'm pretty sure I haven't.

Ah well, ya'll be the judge. And just for fun, I'll put a poll up on the right for ya'll to weigh in on.



Read more: http://leftbrainrightbrain.co.uk/?p=3144#ixzz0SMeRj1Oe


You know, blatant misrepresentation of a person just isn't right. And when you have to resort to that to get the warm fuzzies you need,  that's wrong.

Here's what she's posting around the internet:

"From: Jennifer

Sent: Sunday, September 27, 2009 8:51:36 PM

Subject: [GFCFKids] OT: Lurker Alert...


I know when we put ourselves out there via internet we should expect that there

is always a possibility someone out there will get a hold of your information.

I'm ok with that, but what this woman did is despicable and I want every group

to know this woman is/has joined certain yahoo groups only to use people's info,

stories, etc against them...to make fun or mock those who are anti-vaxxers or

those who are pro-gfcf diet &/or biomed. 4 days ago I tried to defend a mother,

whose words were copied and pasted from a yahoo group then made to sound like a

horrible mother because of biomed treatments, and when this woman had no

argument for me she decided to take my blog profile info and post on the groups

comments for everyone to see. I am saddened and disgusted this woman, who from

the looks of her blog is a teacher of some sort, is lurking on groups for the

sheer enjoyment of making fun of parents who choose to do something about their

child's Autism. I don't want to stoop to this woman's level but I feel it is my moral duty as a

member of each group to share this person's info with the group in hopes the

list owner will delete this person based on the fact she has no intention of

positive contribution to the group(s).


Here are her email address... Kim.Wombles@
wombles@

Here is her blog address...

http://kwombles. com/index. html

Here is her class notes/syllabus info...

http://kwombles. com/gp2301mainpa ge.html


And here is her blog address/link. ..

http://www.counteringageofautism/. blogspot. com/

more blog addresses of her's...

http://www.kwombles engl1301. blogspot. com/

I must say, she really loves to use the word woo!


Jennifer"

Now, were what she was saying true, it would be one thing, but regular readers know she's lying. Perhaps she's not aware of that, so half-cocked and on the martyr trail did she go.
 
I have never joined any of these groups, never looked at them before this week. The groups don't have any one to delete since I don't belong.
 
I did the GFCF diet for four years and WE all did it, not just the kids. I don't make fun of folks who do that.
 
And I don't make fun of parents, and I certainly didn't do so on the LBRB thread. I might call a dumbass a dumbass but I don't make fun of them.
 
And the intimation that I do nothing for my autistic children is bullshit. And for her to wear the martyr mantle, and to do so on threads primarily for parents of autistic children when she readily admits her child is not autistic, that's balls. Brass ones.
 
And damn straight I love to use the word woo. Deal with it. :-)

Names, I gots them, so says the cat lady

Hey, you know me, my winning personality, my charm, my wit. I constantly make new friends. I know, you ask, how do you do that, Kim? How do you manage to find just the nicest, sanest, most balanced people out there to be friends with? I'm telling you, I inspire people to start their own blogs, like Lurker; glad to see you are still lurking here. Am I arming you with new material? Like John Best Jr. Hey, shout out to you as well, since I know you still visit. I'm honored, I am.

This week I made a best new friend. I'm telling you, I am a regular miracle worker. I even got to add three new names to my list on the right. Wow. What a great weekend.

Ya'll get bored and want to see the nice, new, completely sound and totally decent friend I made, go on over and look at http://leftbrainrightbrain.co.uk/?p=3144#comment-65044. I bet ya'll can't guess who's my bestest new friend! :-)

Hey, she called me the cat lady. Do you think she meant that bad? Should I add that to my list of names, you think?

Oh, just for her, I'll add a picture of a cat. After all, if she'd looked here first, she might have called me the flower lady.


Hey, maybe she'll be like Lurker or Best and devote a post to me? Awww. Shucks.


And she did! Aww, I am totally honored. I am.

http://health.groups.yahoo.com/group/Autism-Mercury/message/266473

You know, you must be doing something right if the people who think nicotine patches on children are acceptable and that acute diseases are God's way of culling the population don't like you. Whatever will I do? The despair. I could be like Louise and say if that don't bounce my bosoms, but I don't have her cleavage. :-)


And the emails, I gots them, too. Aww. Shucks. Blushing.

From Jen, ain't it sweet? Maybe we will get to be best buds after all?



"--- On Sun, 9/27/09, Jennifer  wrote:


From: Jennifer

Subject: Re: OT: Lurker Alert...

To: "wombles@sbcglobal.net"

Date: Sunday, September 27, 2009, 9:04 PM


I'm over it. Thanks! I've already received at least a dozen emails. All saying the same, you are a very strange woman of three Autistic children. The overall feeling about you is the same...they feel pity for you and your family. I do have one question....why are you a a part of a yahoo group, such as A-M, that is really of no interest to you considering you don't agree with any of the principals???? What a way to end 4 days. I thank you, I've learned my lesson...it would be less painful to beat my head against the wall then to argue with a group who are committed to never opening their eyes to reality...poor kids."

My response:


I'm not, Jen, never have been a member of that group. Never saw it before Wednesday. Only things I read are AoA and Huff.

So glad you are over it, though. I was so worried about your well-being. Honestly. Glad you got the ego boost you needed, though. Shew.

If you thought you were going to make anyone buy into woo over at LRBR, you were sorely mistaken.
And for the record, I don't consider emails from strangers private communications. Think on that before you email again, as I have no problem using it on my blog.

I have no problem with folks thinking I'm a strange lady, and I don't care if they feel pity. Why would I? I just hope you're good with folks thinking you might be the one who's a wee bit off her rocker. Okay? If your group sides with you and my group sides with me, then we both get to walk away with our egoes boosted. Ain't it grand?




And I don't have any problem using it. Get my best material from this kind of stuff.

9/26/2009

It's Not an Entity that steals your children. I am Autism propaganda

http://community.livejournal.com/asperger/2415706.html Thanks to Codeman38 for providing the transcript of the I am Autism video.

I haven't gotten less irritated by this distortion of ASDs as the week has progressed, and the comments by two people over at http://leftbrainrightbrain.co.uk/?p=3226 have only strengthened my frustration. Of course, comments by anti-vaxxers at http://leftbrainrightbrain.co.uk/?p=3226 don't serve to lessen it either. Convuluted and tortuous logic abounds in these two in a misguided attempt to support the use of often dangerous and completely uneccesary treatments for autistic children. The argument that it reflects the depth of the mother's love for the child is poorly served considering that mothers who engage in exorcisms for their children undoubtedly love them, too. There is NO good reason to put a nicotine patch on a child. No good reason to think that lupron, IV chelation (round after round), HBOT or IVIG are effective, beneficial treatments. There are in fact clear evidences that none of these should be used on autistic children.

But, hey, once you watch the I am Autism video and pick apart the offensive narration, you begin to get an idea of why a subset of parents will go to such lengths. They've decided that autism is a monstrous entity out to frak with them and destroy their lives. Not the kid's life. Their lives. Got it?


"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."

What the hell does this mean? Too late for what? I'm visible in your kids but invisible to you? WTH, who is it visible to, then?


 "I know where you live, and guess what? I live there too."

Okay, considering that autism is neurological difference/disorder, it is a function of the neurological wiring of the person who has it. This menacing I am a thief in the night crap is annoying. First off, since the child is autistic, and they've presented autism as foreign entity invading, it tends to render the child a bit like Damien, doesn't it?

"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."

Again with the menacing. What the frak does this mean, I speak your language but I steal it, and I get a new one. Do these people think there is some amorphous entity moving from child to child and sucking the humanity from the child?

"I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined."

Bullshit. Since in all likelihood autism was set by birth and is a neurological difference, it didn't "work" quickly. Wow, way to get horribly wrong and seriously offend parents whose children have AIDS, cancer or juvenile diabetes.

 "And if you are happily married, I will make sure that your marriage fails."

Not the child's fault. Narcissists. And not all marriages fail. My husband and I will celebrate 21 years this December, and our autistic (and never leaving home to live an independent life) son will turn 20.

Oh, and that's not simply a testimonial masquerading as evidence. Here's an article linking to a survey that shows the divorce rate for parents of children with ASDs at 30%, well below the national average.
http://www.opposingviews.com/articles/opinion-what-are-the-divorce-rates-among-autism-families


"Your money will fall into my hands, and I will bankrupt you for my own self-gain."

I won't pretend that many families don't go deeply into debt for their children. We have not. And not because we had the cash to pay for the therapies ourselves. What the school system didn't provide, I did. I busted my ass for, well, damnit, nearly two decades. Thousands of hours spent providing one-on-one intervention. It was time well spent.

If you go bankrupt because you chose to go down the woo-trail or to pay 50 grand a year on ABA, I'm going to think there might have been a better use of your money and your time.

"I don't sleep, so I make sure you don't either."

I've written about fractured nights and splintered days. I had more than a decade of them. I walked around exhausted for literally years. I get it. You find ways around it. And it gets better.

"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."

First off, get over yourself. Embarassment is a choice. What the heck is the pain? Again, narcissistic. Struggle, well, that's possible. So, you learn what your kids' triggers are and what their currency is. You prep well in advance of an event and you bribe them. It's called operant conditioning. And if a stranger is an ass to you, you call the person on it. Seriously. How are you going to create a kickass kumbaya world for your kids if you aren't advocating for them? My children are beautiful children who, when we prepare them adequately, are generally well-behaved children. They have limits, so if I push them past those limits and they have a meltdown, who's fault is that? Mine.

 "You have no cure for me. Your scientists don't have the resources, and I relish their desperation."

Bleck. So much wrong here.

"Your neighbors are happier to pretend that I don't exist, of course, until it's their child. I am autism."

Mostly, it's a lack of understanding, which AS certainly didn't help. Yeah, like the neighbors are going to want to have anything to do with the family as a whole after seeing this announcement. Way to help, AS.


"I have no interest in right or wrong."

I don't even know what to say.

"I derive great pleasure out of your loneliness. I will fight to take away your hope."

Not about the autistic's perspective. All about that yuppy-ass, whiney ass narcissistic, pity-partying parent again.

"I will plot to rob you of your children and your dreams."

Totally know who they are appealing to: the anti-vaxxers who believe their children have been stolen.

"I will make sure that every day you wake up, you will cry, wondering 'who will take care of my child after I die?'"

Really? Are you friggin kidding me? Not about the autistic. Not about how to make society more adaptive for the autistic. Not about making the autistic's life better. All about the parent.

I admit that I think about what will happen to my son when his dad and I are gone. That's why we have a special needs trust in place for him. We aren't made of money, but we will do what we can to make sure he has a home to live in and a guardian to take care of the things he cannot. I do not think his sisters will need the same thing in place, but we will be ready if they do.

 "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."

Who ignored autism? And what the hell is autism winning? There aren't any more autistic children than there are autistic adults (new survey showing 1 in 100 adults is autistic. Oh, and kids are autistic at the same rate, according to another study). It isn't an epidemic. It isn't caused by vaccines. No one ignored autism. Decades of research and efforts to make the public aware of autism. Better and earlier diagnosis. Early intervention.


This public announcement is garbage. It should have been offensive to almost all people. I submit, again, that if you agreed with it, it says a great deal about you and how you view your child. Autism isn't about the parent (unless the parent is autistic, then it's about the parent). Parenting any child shouldn't be about the parent. It should be about the child's best interests.


I do not support Autism Speaks when it puts out offensive videos like this.

9/25/2009

Help Kat get a new wheelchair --

Woo-psie Doodles and Oh Noes on a Friday morning

This afternoon, my husband and I will pick our three children up early from the school and day center they attend. We will drive our children to the health clinic we use, and we will line up, all five of us, and we will get a flu shot. That's right: a flu shot. Probably not the mist, so this will undoubtedly be, gasp, a flu shot with thimerosal in it.

We will go and do this, as we do every year, not because we are sheeple as the vaccines-are-the-end-of-the-world people love to call people who use evidence-based medicine. We will do this knowing that even though we have never had an adverse reaction to a vaccination, one of us could this time. Just as everytime I swallow one of the medications I take each day, I am aware that there could be an adverse reaction. One of the meds I'm on can cause sudden liver failure. Seriously. I know it, and I have to weigh the extremely low chance of that with the condition it helps manage. Anyone who know me well knows that I don't tolerate side effects from meds. If it messes up my taste of soda, well, screw that migraine preventative. I like my diet pepsi. :-) I'm sure you get my point here. I make this decision with my husband regarding vaccination and I don't make it lightly.

No, I am not a sheeple because I choose to vaccinate. I don't accept blindly what doctors say, not for me, not for my children. I look at the available literature on the medication recommended, I look at the illness or disease information I can get my hands on, as well. I ask questions. I go back to the doctor and ask more questions. I remember that doctors are busy people who are often doing too much and who in all likelihood do not have my medical history or my children's in their minds as they make rapid decisions. I believe in making logical, reasoned medical decisions based on the evidence at hand and not on emotionalism.


So, my husband and I will go today with my three autistic children and we will get them vaccinated. Oh noes. With thimerosal. Oh noes. And I'm pretty sure we won't bring back more autistic children as a result of that. Happy meal toys, yes, and happy smiling children. They all understand that the flu shot should help them avoid getting the flu, that it is not a guarantee, and that their momentary discomfort from the shot will be ameliorated with a happy meal. A gluten and casein full happy meal. Double oh noes. And before anyone screams that means I don't love them, I did the GFCF diet for four strict years. Not a damn bit of difference except that I now have much happier children who occasionally get a happy meal.

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.

9/18/2009

Conversation goes a long way towards kick ass kumbaya

It's been an interesting week here at Countering; one of my posts (Sucked into the woo-vortex) has seen tremendous discussion and progress towards understanding where parents who appear to be locked in an unending war over vaccines and autism are actually coming from. If you read Huffington Post's articles on autism and vaccines, then you know what I'm talking about. There is an us-them mentality that prevails. AoA, which crossposts a lot of stuff at Huff, does what it can to stoke those fires so that parents who believe their child's autism was vaccine related don't have the opportunity or even the desire to relate to parents whose children's autism was not regressive, was not related causally or correlatively to vaccines. And Huff's format ensures hostilities take the court every time.

I don't know how long the war's been afoot on the internet; I just came to the table in March of this year. I'd never heard of AoA until March, although I had visited several blogs and forums related to autism before (mostly those run by autistics for autistics, since it was the autistic culture I was interested in). I know, you'd think since I've been dealing with autism for nearly two decades (autism awareness came to our house when Bobby was four, but his dififculties began at birth) that I would have really known all about this internet world of blogs, forums, and sites relating to autism and vaccines. I didn't. I knew about Wakefield when that came up in 98. I knew about secretin and every other woo idea that came along. I noticed, and I went on about my business of raising my son, teaching him, working with him, reading journals and scientifically based books about autism, and all the stuff on the internet passed me right on by.

As the vaccine controversy got louder, I began to pay a little more attention, but it was to get the articles on vaccines and study that, not to read what parents were throwing around. Anecdotes rarely move me. May make me cry, but do not move me. I'm interested in what we can know through science. We are such fallible creatures and believe all manner of woo, some of it harmless and frankly beneficial to our well-being and a great deal of it that is harmful. I may find a person's story compelling, but I won't make health-related decisions based on one person's story. No one should. Testimonials work, though, even when we know they should not. Psychology is every bit as fascinating as people watching, if you were wondering. It is people watching, but on a scientific footing.

In March, I had three weeks where I was stuck in my recliner and with a laptop in my lap. And I explored to my heart's content. Children in school, the bright boy settled into his life at the center, students being managed via email, and for the first time in my adult life, I had hours upon hours of time to fill. Oh my.

What a world I have found in these last six months! It has been life-changing, endlessly fascinating, and it beats video games or tv to pieces for entertainment and for creating a deep and abiding satisfaction. I love people and their stories; people watching is my favorite thing to do. The internet gives you the freedom to people watch more people than you could ever do in real life. And not only watch, but the opportunity to interact and form relationships that change your life and a depth to them you didn't even know you were missing. Tapestries being woven, that is what I see as I write my blogs, read the comments, read others' blogs, leave comments there, and watch relationships being built and grown over the passing months. Lovely stuff, even when it's dealing with the division within the autism community; funny, I know, but true for me.

So, I've spent the last four months (has it really only been that long since I started Countering on a whim when AoA wouldn't post my comments?) using this blog to deal with, well, countering AoA and other sites promoting woo. And I've developed the idea of kick ass kumbaya, a way of approaching this division in the autism community. It isn't enough to just woo fight, or for that matter, dumbass hunt. Fun, yes, in and of themselves, but not great for community building unless you are building it on exclusionary criteria. AoA, Gen Res and the like already have the corner on exclusionary community building. I'm interested in trying something different.

The autism community is that. A community. So, let's act like we're all members of the same in-group and see where we can get. I know, that's probably my love of  the ideases of Joseph Campbell and M. Scott Peck coming through, but, still, a community that accepts everyone to the table and holds them to be part of the ingroup. Sort of like family, you know. Gotta let them to the table and then deal with them. Find a way to live together. That begins with understanding where they are coming from. A little theory of mind in action (and no, I don't think autistic people lack an awareness that other people have minds of their own-- I think we all make that cognitive error at times, and assume that others know what we know, among other things).

Kick ass kumbaya works towards community building, says we take on the woo and those who would prey on others' vulnerabilities and stand for those who can't stand for themselves (and for those who want the company), but that we do it with real compassion for the people involved (okay I say that, but that's what kick ass kumbaya means to me).


That means consensus building where possible. And it means recognizing an innate need to create in-groups and out-groups. Once you know why you do some of the things you're doing, you have the ability to stop doing that when it is no longer advantageous.

We have a generation of autistic individuals coming of age. My son turns 20 this year. My daughters, who will be 6 and 8, are in the next cohort that will become adults at the end of the next decade. We have ten years or so to work to make the world a better place and a more accepting place for this current cohort of autistic children. Their autism isn't going to magically disappear; no amount of supplements and MB-12 pops is going to make their brain be wired differently. They see the world differently; they have more challenges to face and overcome. We need to focus on effective therapies to ease their challenges and help them be successful and we need to redefine what success is. Success should not have to be a square peg fitting into a round hole.

My goal is to make the world a softer place for my children and the hundreds of thousands of children in this country who are like them (and I'm not just talking about autism). Part of that fight to make the world more accepting of them and easier to navigate for them is fighting woo.

This woo says that my children need to be recovered and if I only through enough money at it, go down every possible avenue of quackery, I will have recovered my children. This woo denigrates who my children are; it dehumanizes autistic adults. It says they are damaged, defective and need to be fixed and made whole. It terrorizes parents and makes them hate the medical establishment all while promising expensive cures that medical insurance will not pay for. It's medicine, but it's maverick medicine. And we all know that the lone holdout has the courage of his convictions, and if he has the courage of his convictions he must be right. Need I remind anyone that courage of one's convictions manages to get a fair amount of people killed? It isn't courageous to be a lone voice when that lone voice profits off of parents' desperation. It's incentive to profit. It's hero-casting at its best. It is ego and pride. And desperate parents not listening to their woo radar.
 
We want our children to be healthy, happy, successful, to have every advantage, and to do better than we have. Autism, especially the way so many out there are trying to cast it, robs parents of their desires for their children. Except that it doesn't. That's bullshit and a decision that everyone makes for themselves. You can be autistic, you can be disabled, and be happy and be healthy. Successful? Yes, if you decide to define success on whether a person is a good person who tries to be of service to others to the degree of one's capacity to do so. On those measures, even on a bad day for my son, he has achieved what I wanted for him: he is happy, he is healthy and he is successful (he is who he can be and there is value and worth in his existence). Does he have every advantage? No. Will he do better than I have? Hmm. Depends on how we define it, doesn't it?
 
Too much of what's going on in the autism community isn't about the autistic individuals. It's about the disappointment that parents have faced upon realizing that their hopes and dreams have been dashed, that life isn't going to go quite the way they thought it would. It's about quick fixes and easy blames. It's about ego and id.
 
Many of the challenges our children face are daunting.  I don't make light of those challenges, nor how these challenges serve to challenge us as parents. I don't belittle the struggles that we all face to find a way to cope with caregiving beyond what we were planning for. Nor our fear for the future.
 
But you know what, what AoA's doing isn't doing anything to make that future any brighter. It's not. It's not building a strong, positive supportive community. It's not dispassionately examining the science, nor the gaps in the science. It keeps trotting out junk science disguised as the lone heroes finding proof of a vast conspiracy to keep us all dumb and down. It's dopamine and hero journeys.
 
 
Let's decide on a different quest. Let's decide to find the humanity and the commonalities between those who would appear to be on different sides. Let's show that actual deep, meaningful conversation in which the other's humanity is never forgotten is actually more satisfying and rewarding than knocking fake dragons off of fake castles. Seriously, let's find the dopamine in kick ass kumbaya.

9/14/2009

For God's sake, at least AoA could argue against a real position occasionally

Busy, busy day, but in my quest for a brief distraction from the stack of essays awaiting my grading, the psychology tests begging to be recorded (and not pretty grades, shame on 'em), the A & P quiz coming up this afternoon and the chem test tomorrow that I need to study for, I popped on over to my favorite place to get enervated (anger, outrage, disgust and occasionally sheer awe at the audacity of the woo and realigned universe that AoA apparently exists in are awesome for waking your ass up).

Wow. Okay, sometimes it's the articles. Christ, but Olmstead thinks he's a clever one. Too bad, isn't it? And then there are the comments. You know, I don't know anyone who argues that autism is purely genetic and when you say that folks who view, based on the frakking overwhelming evidence at hand, ASDs as primarily genetic conditions with environmental triggers are instead arguing that it's purely genetic, you look like an incredible (insert any of physioprof's descriptive word choices here or we'll use Thelma and Louise's) dumbass. Seriously. You really do.

Ya'll keep redefining autism into the twisted, deformed, frakking unrecognizable condition that you're so busily morphing it into so that ya'll can better sell the advertisers' and sponsors' products, and I'll keep thinking you have absolutely no moral compass whatsoever in addition to being complete idiots. Oh, I know, that is so harsh. I'm not talking about everyone, just the ones it fits.

I mean, I don't need a nap now; I'm energized and raring to go right back into that A&P, so, shew, man, I guess AoA is better than coffee for waking my tired and rather well rounded ass right on up. Thanks, ya'll, from the bottom of my compassionate, caring heart. I'd tell you you were the best, but I wouldn't want you to think I meant that in a good way.

:-) I gotta add, I get some of my best laughs from reading AoA. I really do. I'm sorry. I try, I really do, to be a kindler, gentler me, but I dare any of the woo fighters to go read some of the comments from the Olmstead article and see if you don't laugh. You gotta. Ain't no choice. Wow.

9/13/2009

Sucked into the vortex of the woo-nuts; a follow-up on Moffie's debate challenge

Warning: A not-so-brief rant at the damage that militant ant-vaxxers can do will now commense:

So, Dr. Sears has an article on vaccines and autism, right? So he can help parents sell his books. And somehow or another I found myself sucked back into the vortex of the woo-nuts (okay, we know who I'm talking about; it's not like I'm tarring all those ant-vaxxers with the same brush stroke).

I told Anne Daschel that if more folks thought critically they'd have less of a following over at AoA. Moffie decided to challenge me to a debate, and I told her I'd rather bang my head against a brick wall. Well, I would! Spent months countering her conspiracy theory crap before I realized that folks would either see she was off her rocker or not and I decided if they bought into the same woo, well, okay, harsh as it may sound,  you know where that train of thought is headed, right?

So, she responds to my post (which is somewhere below in another blog) with "I didn't think you'd be up for it. That says it all."


To which, I responded with:


Thank you sincerely for the chuckle reading your comment just provided. Moffie, with all sincerety, in order to have a debate there would have to be an agreement on the facts at hand so the interpretation could then be argued. You don't come to the table with any facts. And anyone reading your site in agreement with you is also not coming armed with any facts. There is absolutely no reason on God's green earth I should waste my time with "debating" you.

You spin it your way, Mof, go right ahead. Doesn't hurt my feelings in the slightest. :-)


Now, I would add here where I ain't gonna be censored that it certainly does say it all that I won't "debate" her. There's no point in debating every crackpot that comes along. You elevate the status of their crackpottery by doing so. And this person, who thinks that SIDS is caused by vaccines, that vaccines are worse than the diseases, that there is a vast government and industrial conspiracy to make everyone autistic (which is by the way the dumbest frakking thing I've heard), and that getting a vaccination is as bad as what those who were lined up for the gas chambers during the holoaust experienced because the fear is somehow equivalent, (I don't forget shit that folks have written even it some of it manages to disappear from Huff, not that that horrendous crap did), thinks I should debate her at her site. No. I think I'll pass. I'd much rather do my chemistry! And grade essays and study for A and P. And a million other things, like go clean my brother's colostomy bag before I'd want to debate you, Moffie.

I hadn't missed conversing with you, and I think I'll pass on future exchanges. What you do is beyond bad taste. You actively seek to make the elderly, most at risk of the flu, not get protected. Seriously. She's written about going into drugstores where the elderly are in line for their flu shot and scaring the shit out of them. I hope the next time you do that, it's noticed and the cops are called, Moffie. I really do.

To say that I have grown disgusted over the months with your level of  distortion, lies, and flat out crackpottery would be to minimize my reaction to what you spend your days doing. I have to admit that I'm grateful I had missed the last month or two of your work as just2curious. I just hope that your impact is minimal, that so much of your time is spent on Huff that you don't get out and about in the real world misleading people. But who knows, Moffie, maybe one day you'll have a counter up like Jenny does.

It's all about the Dopamine, even this.

I don't know about you, but I get a rush of energy when I wake up in the morning with something I want to write about. I feel a tug almost in my belly that pulls me towards that keyboard. I've got things to say, and I feel it in my bones, in my body, this yearning, pulling tug towards that activity. Sort of like shoe shopping, if you will.Writing is my shoe shopping (well, when I'm not actually shoe shopping). It's what gets that dopamine pinging in the ventral tegmental area and the nucleus accumbens.

It sets me off, fires me up, makes my day. It fuels me. I'm sure you can see where I'm going on this. We all have something that does that for us (people in the deep recesses of a depression do not have this, cannot imagine having this, don't believe they ever did, but that's another essay for another day). Even those folks who all they do is bitch, whine, and moan. They're doing it for the dopamine. I'd guarantee. I'd even run a study on it if I could get the grant to run funtional MRIs on them as they engage in the behavior. I'd hypothesize those two areas of the brain light right on up when they are in mid rant.

What am I saying?

Those folks over at AoA  and Huff who seem to be on a ceaseless rant about how awful their lives are and how it's big government and pharma's fault everything has gone wrong and it's a giant conspiracy? Huge dopamine releases. Has to be. Calling people sheople dogs and in the process mentally elevating oneself to a superior position? Dopamine.


Dopamine is a major motivating factor in why we do things. Major. And it isn't even so much about the event itself, but the anticipation of doing the event that leads to the dopamine rush.

Those diehards locked in a constant battle of one-liners, insults and some serious BS (of course on the anti-vaxxer side): dopamine. It's a heady rush. That's why they keep at it. It's obviously better than stamp collecting for them.

And in and of itself, there isn't anything wrong with doing what gets your dopamine flowing. The problem arises when your dopamine rush hurts other people. And I mean really hurts. When it hurts society. Drug abusers, in their almighty pursuit of that god dopamine, hurt their families and hurt society.

Rabid anti-vaxxers (and ping there went some dopamine for me) hurt their children, their families, and society. All for that dopamine rush they get from feeling morally superior, righteously angry and convinced that they know the truth and everyone else are sheeple and sheople dogs. They cast themselves as the heroes in their epic battles, the underdog who has been spat at, the lone maverick that the government and industry want to stamp out, the martyr who has sacrificed a child at the alter of big business who must now avenge that child.

To be fair, I'll acknowledge that those rabid anti-vaxxers (and no, not all AoA loyalists are) would say "I know you are, but what am I" because that is their mentality level. Have I not cast myself in the lone hero role, the lone blogger who takes on the giant autism "newspaper"? Nah, not even. First off, I'm not alone; there are many voices of reason (see, I'm not the lone voice) working together to promote critical thinking and logical evaluations of claims. I don't think there is a conspiracy of folks in a conglomerate out to get me, even if my laptop suspiciously crashed while looking at a frenemy's family photo.

About the only thing in common is that delightful dopamine rush. I'd say we have autism in common, but, no we don't. See, they've created a whole different explanation of why their kid is the way he is and take the label of autism they have been given for the child and twist it to fit their epic hero battle. They've lost the child, not from vaccines and not from autism, but in their pursuit for martyrdom. The child's actually right there, watching. You'd be amazed at what autistic kids actually observe (even those lower functioning ones). My three, even my bright boy, take in and absorb and hold onto for years, and I mean years, things that most folks wouldn't have even noticed let alone remembered as if it were yesterday.

I'm looking forward to seeing what these children of the anti-vaxxers have to say someday. Especially since so many of the loyalist AoAers and editors have high functioning autistic children who they write are recovered. I know that not all AoA loyalists (you can sure be a reader and not a loyalist) have kids who are high functioning or recovered, but it would appear that more do have children with less severely impaired children than do not, based on the comments and the articles. So, yup, your kids are going to be the autistic adults who get to blog and advocate for autism. I think society will be surprised in the next couple decades with the continued rise in the autism culture and how it morphs to become primarily about and by the autistic individuals themselves and not about the parents.

If you're doing it right, it was never about the parents in the first place.

And how can that not be kick ass kumbaya right there?

9/11/2009

Vaccines And Autism: What Can Parents Do During This Controversy?

http://www.huffingtonpost.com/dr-bob-sears/vaccines-and-autism-what_b_279745.html?show_comment_id=30673581#comment_30673581

Craig, you read me. What's before that kumbaya? Hmmm? Kick-ass. No, it's not harsh; most folks do not assess information critically. It's poorly taught in the school system and so much woo is advertised that it's not an easy thing to do, especially since research has demonstrated that the more we hear something, the more likely we are to believe it; that if we do hear it and take the message in, that we automatically believe it and have to critically examine it in order to reject it.

Yeah, so, no, it isn't harsh to say that some of the most dedicated commenters, at the very least, over at AoA are not critically examining claims, not AoA's claims, and not their own. Doesn't mean I don't wish them well and every happiness, but it also doesn't mean I pretend they are examining things clearly, either. That would be kick-ass kumbaya right there.

About Autism
Read the Article at HuffingtonPost

Challenged to a debate. Nah. I'm good. Besides, Moffie, you can always post here.

Marsha,

I believe that anyone with the interest and the time to kill could read back through our posts and see that you and I have debated this issue repeatedly. I'm sure you feel that you came out on top since you're still here cranking out the woo and I'm on my blog and elsewhere more than I am here. Works for me.

The truth is certainly the truth, but your "truth" is nowhere near mine nor many who are interested in objective science. Since that's true of many people relating to many things, there's not much you can do at the individual level. You believe what you believe and nothing is going to change that. So, not much opportunity for personal growth there, is there? Just a condensing of bitterness.

No, I'm not interested in debating you. Why on earth would I want to be beat my head against a brick wall? I decided I had better uses of my time than to spend my time pointing out just how factually incorrect your posts are on so many things and that if people agreed with you, well, heck, good for them. You wake up with your purpose; I wake up with mine, and I'm just fine that they don't intersect at all.

http://www.huffingtonpost.com/dr-bob-sears/vaccines-and-autism-what_b_279745.html?show_comment_id=30684622#comment_30684622

9/10/2009

Does anyone care about Rotavirus vaccination? by David Brown

By David N. Brown


In a recent article for Age of Autism, JB Handley refers to Rotateq in the headline as “the vaccine nobody wants”. On this occasion, there can be little doubt that Handley has a valid point. He argues, in a straightforward fashion, that despite ACIP/CDC recommendations, there is limited interest in Rotateq.. Most significantly, he reports that “27 of 29 other first world countries besides the United States DO NOT think Rotavirus is an important enough disease that the children of their country should receive a vaccine for it.” Unfortunately, Handley does not give details or cite sources, but his figures are approximately reproducible: Of 31 countries whose “official” childhood vaccination scheduled are available at euvac.net, only two (Belgium and Luxembourg) include rotavirus. Handley may also be right in implicating Paul Offit as responsible for the US decision to recommend rotavirus vaccination (notwithstanding his uncritical parroting of the canard that Offit made “tens of millions”). The lack of general concern over rotavirus which Handley reports parallels a suspicion I have long held about rotavirus vaccines: that safety issues with these vaccines, including the very real failure of Rotashield, lack what is necessary to draw significant concern from the general public.



For the purposes of this essay, I finally put my suspicion to the test. Using Google News searches, I compiled the number of articles about Rotashield and MMR from 1998 to 2005, the approximate time frame of the failure of Rotashield and the scare over MMR and autism. The results were as follows:

MMR Rotashield

98-99 503 145

00-01 1,540 84

02-03 2,990 32

04-05 3,120 76

Total: 8,153 337



In summary, MMR received more than 24 times the press coverage of Rotashield, despite the fact that the claims against MMR were never supported by a compelling volume of scientific evidence and opinion while problems with Rotashield were accepted by medical professionals as real and sufficient cause to remove the vaccine from use. I will offer several reasons for this, apart from the media circus created by Wakefield, Barr, Handley etc:



1. Measles is a well-known disease; rotavirus is not.

2. MMR was already widely used, creating a large pool for unsubstantiated claims.

3. As an older vaccine, MMR had already been a subject of many claims of injury, included substantiated reports involving the “Urabe” lot, making it a subject of pre-existing suspicion.

4. Autism was (increasingly) a heavily publicized disorder; intussusspection is not.

5. The claimed relationship of autism to MMR was based in no small part on other claims that both were associated with a number of other disorders, such as “leaky gut”, demyelinating nerve disorders and chemical poisoning. This maximized the basis for shared concern among members of the general public.

6. Portrayals of autism, particularly by those who attribute it to vaccines, resonate with psychologically powerful archetypes of myth and folklore, particularly the “changeling” legend. The known or alleged adverse effects of rotavirus vaccines lack these connotations.



There can be little doubt that “anti-vax” groups like Age of Autism would like to make Rotateq a subject of scandal comparable to that which beset MMR. Ironically, they could probably make a better case against it than they ever did against MMR. It would seem conceivable that, as it becomes better known and more widely used, Rotateq could eventual become the subject of a general scare. But I, for one, doubt it. I am (as I have written elsewhere) entirely satisfied that vaccine “scares” are impossible on a substantial scale unless medical concerns (valid or invalid) are complimented by psychological and cultural ones. To arrange such a confluence purposefully and successfully would be difficult even for those who understood the underlying forces involved. Of course, there is virtually no chance of such comprehension for those sincerely caught up in anti-vaccine ideology.

That, in my opinion, is why there has not been and may never be a “Rotateq scare”.

I gots to Handley you a DUMBASS and a LIAR ta boot! Louise and Kathleen's take

Kathleen from AutismHerd and Louise from Even Dumbasses Have Feelings have teamed up to bring us this blog post, posted first at http://www.evendumbasseshavefeelings.blogspot.com/:

Says Louise:

Now I reckin you folks remember that post I wrote on that feller Mr. Handley tha other day? The fella who is talkin about the big pharma conspiracy, adding vaccines that ain't neccessary an such. He is one a them co-founders a "Generation Rescue" along side the enhanced bosomed gal, and national television farter, Jenny McCarthy. He wrote the article for AoA called "Rotovirus: the vaccine nobody wants" In it, he talked about his discussion with the Oregon Dept. of Health. How they schedule their vaccines an such. He also made a point to further his smear campaign of Dr. Paul Offit-one of the creators of the rotovirus vaccine. Well, our friend Miss Kathleen decided ta do a little investigatin of her own. I'll let her tell it from here an such.


Adds Kathleen:

Thanks Louise, I feel quite flattered to be your first guest blogger. I read the article by J.B. Handley, and was appalled. Firstly, because of AoA's never ending effort to discredit Dr. Offit.

He, along with his colleagues created a vaccine that in effect has saved thousands of lives. Thousands. Instead of applauding him, AoA has made every effort to distort, misinterpret and flat out lie about him. Secondly, and more importantly, J.B. Handley, tries to discredit the need for the rotovirus vaccine. He further goes on to quote someone from the Oregon Dept. of health -"When it came to Rotovirus, the last vaccine I asked them about, I will just leave you with a quote from their spokesperson"-"[a brief chuckle] Well Rotovirus is just some diarrhea for a day or two. It's just not a big deal. That one will never be on our list." I found it interesting that a health dept. member would be so cavalier about so dangerous a virus. I further found it interesting that Mr. Handley didn't name the person he quoted. I did what any thinking person would do. I contacted the Dept. of Health in Oregon, and sent them a link to Mr. Handley's article. I asked them if in fact this were true. I asked them what their opinion of the Rotovirus was. I received their response today in the following email-

Kathleen,


Rotavirus is a cause of acute gastroenteritis in children. Illness can be severe. In both industrialized and developing countries rotavirus is associated with about one third of hospitalized cases of diarrheal illness in infants and young children under 5. It is not insignificant nor is it anything to laugh about. The attached link will provide more information about rotavirus infection http://www.cdc.gov/rotavirus/

I can't imagine a representative of the Oregon State Health Department responding in the manner portrayed in the article. I will see if I can find out who was interviewed by Mr. Hadley. I suspect they were misquoted.


Thank you for your email,


Maureen

P. Maureen Cassidy, MT, MPHEpidemiologist Immunization ProgramPublic Health Division Oregon Dept. of Human Services800 NE Oregon St., Suite 370Portland, OR 97232-2162

I am appalled at the way AoA twists information in order to further their anti-vaccination cause. I urge any parent not to rely soley on what they read on the internet, or hear from a celebrity, or a celebrity hanger on. J.B. Handley skewed the truth in his article. The very sad fact of the matter is that people will trust what he wrote. I certainly hope that no children die because of it.

Says Kim:

At this point in the setting up of this post, Thelma emailed me to say she had her two cents she wanted added in and suggested I go ahead and make it a party of four and add mine in, said something about I had probably had enough of the chemistry studying, and speaking of parties, she said to let readers know that Thelma and Louise will be having their Friday night dumbass huntin party at 7:00 pm central time at their blog. She said she'd fancy up a post sometime tomorrow for folks to share the dumbasses they have found this week or any other kvetches -- so without further ado, Thelma:

Gots ta admit  me ta a wee spot of envy; there Louise was emailin back and forth with Kathleen and cacklin as she went. Sounded like she sure were up ta no good at all an I sure did want in on it somethin fierce.

Now, I reckon tween this here nice young man David, Kim, Louise and Kathleen, that they really gots the Handley thing covered fairly well. Always room ta add that the man is a dumbass, course, that goes without the sayin, don't it?

Listen now, I been over there at Huff. Man sakes alive and at NAA, Then done stopped by at the Age of Asses. Buncha folks readin these things, mostways I figure they's decent folks wantin ta do tha right thing. Folks runnin the sites, though, ain't none too clear on their intentions. No sir, I sure ain't. Seems ta me that these here bloggers at Huff is selling their products. AoA is suckin tit ta some big woo companies as Kim would likely call em. So seems ta be this NAA, which looks ta be like AoA on the steroids and actually factually sellin the shit. not just getting paid for the advertising.

Lotta desperate people out there, and not all of em are dumb or dumbasses. Damn shame they being sold a bill of goods is what I'm sayin.

Ya'll come party Friday night.



Kim's turn:

I feel like Lawrence Welk, at least for a minute. It's been a busy week here, and I appreciate the help of David, Louise, Thelma and Kathleen and of course all my friends who take the time to comment here for making this an interesting adventure. It means a lot that you stop by, whether you stay awhile and chat or just breeze on by after a glimpse.


Getting along and being supportive are important things to do, and it's an important element of what we are trying to do at the Countering facebook group and at Raising Autism. They are growing slowly and could use your help by joining and posting occasionally to keep the conversations going.

That's not my only focus, though, as you well know. I stand to counter the woo. And to use my favorite word, frak, but there is tons of it. I don't do this alone, as this week has seen. I got called a devil's advocate this week for doing this, but I'm not sorry at all for standing up to what are provably lies. Lies. How that doesn't disturb the readers of AoA who tend to favor AoA's way of thinking is really unbelievable to me despite what I know about psychology. It's a damn shame. Paul Offit has offered two separate rebuttals on this website. AoA has known well before this week that what they were writing were lies. There are lies, damned lies, and then there are AoA's lies.

At some point, folks ought to decide where they stand. Do they tolerate lies? Do they tolerate the cesspool of hostility that it has become over there? Sheeple, sheople dogs, and the other ugliness because people disagree with what they (the editors at AoA) know are outright lies. Now Thelma and Louise might call a dumbass a dumbass, and I for sure have called folks chicken shits when they were and unbelievable asses, for that matter. But sheeple, what it implies, is seriously offensive, and I'm not even viewing it from a personal perspective, as there's no love lost. If I thought they were calling me a sheople dog, I'd add it to my list over there. It's offensive to those parents who read the science, talk to their doctors and choose to go with what the evidence says. AoA says that if you don't walk their line all the way, you are sheople/sheeple. That's what they think of dissenters. I don't imagine they think any better of their loyal readers, either.

Anti-vaccine propaganda circulated as fact by Reuters by David Brown

Anti-vaccine propaganda circulated as fact by Reuters


By David N. Brown

Yesterday, Reuters published the following article, attributed to the National Autism Association: “Offit's Failure to Disclose Jeopardizes Swine Flu Vaccine Program.” The following is offered in rebuttal to this article:

“According to CHOP documents, Offit's share of a royalty sale for the Rotateq vaccine to Merck is a minimum of $29 million and may approach $50 million.”
According to Bench to Bedside January 2007, CHOP policies in effect until late 2006 define the inventors’ share as 10% of gross, which in this case would be $18.2 million. Paul Offit has affirmed that this was the amount of the share. He also reports that the share was split between himself and two other doctors with their names on the same patent, making his income “only” 6 million. Claims that he received a much larger amount originate from Age of Autism, a “fringe” autism/anti-vaccine blog, and specifically a Feb. 2009 post by editors Mark Blaxill and Dan Olmstead. These authors made many incorrect assumptions and statements, such as the claim that the other patent holders were ineligible for shares of the royalties. Multiple questions and corrections have been sent by the present author, but most, including a forwarded statement from Offit, have not been allowed to appear or in any other way responded to on the AoA blog.

"`When Dr. Offit went on Dateline he was probably disinclined to criticize the MMR vaccine since it is produced by the same pharmaceutical company that made him a wealthy man,’ said Jim Moody.”

This is clearly primarily a point of opinion. On one point of fact, there is a significant error: While Merck does produce MMRII ant the similar ProQuad vaccines, several other manufacturers also make some version of MMR. Litigants claiming an autism-MMR connection have not limited this accusation to Merck in particular.

“Although the Rotateq vaccine that enriched Offit has no relationship to MMR, his close financial connections to Merck, if disclosed, are likely to affect the public's value of his opinions on the efficacy of the MMR vaccine.”

Paul Offit’s past associations with Merck have been disclosed multiple times. Merck’s role in MMR manufacturing is also a matter of public record. There was no compelling need to repeat these facts during a television interview.

“Offit has frequently accused Wakefield of being conflicted during his MMR research, claiming that Wakefield was being paid by a law firm for his expertise on MMR while also conducting his studies.”

Offit also accuses Wakefield of fabricating data, a charge widely affirmed by other scientists.

“Wakefield fully disclosed his relationship with the litigators in various UK media stories and publicly reported documents.”

Wakefield’s financial relationship with attorney Richard Barr were not made widely known until reported by Brian Deer in 2004. Wakefield responded with a lawsuit against Deer.

“Offit, however, has continued to back MMR as completely safe while failing to inform the public that the MMR manufacturer Merck has made him so wealthy he said `it was just like winning the lottery.’”

The statement, in the context where it was reported, is not about the amount he received: “To Offit, getting the money felt like “winning the lottery,” because he never expected his research to amount to anything more tangible than journal articles.” (Jason Fagone, “Will This Doctor Hurt Your Baby?”, Philadelphia June 2009.)

"`Offit has zero credibility in matters of vaccine safety,’ said Wendy Fournier, President of the NAA. `Not only does he advance the absurd suggestion that children could safety get 100,000 vaccines at a time, he opposes any studies of the comparative health of unvaccinated children that could shed light on the extent and nature of vaccine-caused injuries, leading to their prevention.’”

Offit’s “100,000” statement is specifically in response to the generally rejected theory of “vaccine overload”. It means that it would take the biological components of that many vaccines to harm the immune system or the body as a whole. No evidence is offered here or elsewhere that this is in error. Offit has never questioned the need to study the possibility of vaccine injuries. He has affirmed in principle and in specific instances that such studies have shown real and serious problems with vaccines. He has a difference of opinion with proponents of an MMR-autism link on what methods should be used: He maintains that studies using epidemiological methods are sufficient to rule out such a link, while proponents maintain that these methods are unreliable.


“Beyond Offit's financial conflicts, autism advocates are also dismayed about the physician's credibility on speaking about autism in general, as he does not treat patients with autism.”

Offit has received strong support from many autistics and autism advocates, particularly for challenging a subset of the “autism community” that compares autism to gross brain damage, and advocates “curing” autism using questionable and often dangerous or debilitating methods, such as chelation and Lupron. Furthermore, he has accurately reported what is already the strong consensus about the causes (genetic) and appropriate treatment (behavioral therapy and improved acceptance by society) of autism. It is groups like NAA and AoA who fail to represent “autism in general”.

9/09/2009

Seriously, sheople dogs?

"The sheople dogs are out in force. They think if they snap at everyone they will just jump back into line. But I have news for them, their behaviour is part of the problem - you can't talk about what happened to your family because it offends them. This is conversation which denies people their experiences. It is contemptuous of individuals and it skews the scientific base. It is 'scientism' not 'science'. And every time they snap at you it just demonstrates the ugly, bully boy mentality that underpins the policy."  From John Stone, contributing editor at AoA



My response:

John,

What happened to the veneer of civility you usually wear? Sheople dogs? Really? And then you talk about ugly, bully boy mentality? You wear that, but I won't say you wear it well.

About Autism
Read the Article at HuffingtonPost

Apparently, any comment you make over at Huff, you can now have posted on your blog! Wow. What advertising for Huff! I got rid of the photo of Jim Carrey and Jenny McCarthy they added. Frak. Really?

Now, you reckon they are going to put the comment up over there?

(And for ENGL 1301 students, this is not what I'm looking for on the Huffpicking assignments!) And to best buds who know I am supposed to be studying chemistry, I'm going to do it as soon as I hit publish. Promise! :-)

So, contacting Reuters is a lot like discussing things with....

...people who have an agenda and their fingers in their ears, oh, so like them folks over at AoA or the ahem woosies at Huff.

In its entirety is the chain from Reuters. My question is bolded and in green. So, I'm totally going to submit my own press release to Reuters as soon as I have the time to do a really inventive one. Anyone want to help? Let's create a group press release together and see if we can get it out there!

Recently you requested assistance from Reuters. Below is a summary of your request and our response.


Thank you for contacting Reuters.


Subject


Paul Offit press release from NAA

Discussion Thread


Response (Victor Serote) 09 09 2009 04:05 PM


Dear user,

Please send press releases to:


New York News Desk


E-mail: editor@reuters.com


London News Desk


E-mail: editor@reuters.com

Singapore News Desk


Fax: + 65 870 3820


E-mail: singapore.newsroom@reuters.com


Please note that we can only accept press releases in electronic format. Press releases are considered for news reports and not passed straight through in the manner of a press release distribution service. For time-sensitive material, please submit via PR Newswire or Bizwire.


Kind regards,


Reuters Corporate Webmaster


Customer 09 09 2009 10:35 AM


Any reason you can't get a story right and just instead publish smear talk unexamined?

Rebuttal from Offit can be found at www.counteringageofautism.blogspot.com


Auto-Response 09 09 2009 10:35 AM


Dear user,

The following Answers were selected for you based upon the context of your question.




Title: Is there a standard format for submitting a press release? What is the cost?


Link: http://reuters-en.custhelp.com/cgi-bin/reuters_en.cfg/php/enduser/popup_adp.php?p_faqid=102&p_created=1008161935



Title: How do I submit a press release to Reuters?


Link: http://reuters-en.custhelp.com/cgi-bin/reuters_en.cfg/php/enduser/popup_adp.php?p_faqid=25&p_created=977361513


Title: How does Reuters gather news?


Link: http://reuters-en.custhelp.com/cgi-bin/reuters_en.cfg/php/enduser/popup_adp.php?p_faqid=884&p_created=1133892907


Thank you,


Reuters Support Team

Paul Offit responds to the press release by NAA (and carried by AoA)

On the 8th, NAA sent out a press release rehashing the same misinformation that AoA habitually runs (it's almost like they got it right from them and Wakefield. They probably did). AoA picked it up and ran with it, and I spent a fair portion of my day trying to figure out who NAA was as well as mount an adequate rebuttal. I don't know that it's an adequate rebuttal, but it is what I can do.

I appreciate the researchers who work tirelessly in labs trying to figure out ways to save lives. I admire the diligence and commitment it takes to work for over two decades on one vaccine because you believe in it that strongly. Now, I don't reach the level of adoring fan like Wakefield's groupies apparently do (if you saw the Friday morning piece on the Today show before the Sunday Dateline, you know what I'm talking about), but I'm not a groupie kind of gal. Maybe those women are. My point is, this isn't blind adoration speaking. I've read Dr. Offit's books, all of them, because I wanted to know more about vaccines (read those first), and I read Autism's False Prophets, as well, because I wanted to see what he'd found out.

For most of my son's (who will be 20 this year) life, I have been focused on HIM. I homeschooled him for ten years, I spent the years before that often all day in the school system with him. He was the center of my world as I worked with him to help him. I didn't join support groups; I didn't talk to a lot of parents with autistic children. My husband and I labored alone for the most part. I wasn't desperate; I was determined. I read everything I could on autism, mostly the science because I am so not into the woo. If it was woo, I stayed away from it. Until March of this year when I realized how much was out there.

Why did I start looking, now, after all these years? My daughters are on the spectrum as well. They are 12 and 14 years younger than their brother and it seemed like I needed to see what was out there. Especially since I have students who ask about vaccines and autism. I delved deep into the science of it, and then into the woo. Not all the woo, mostly the easy access free stuff at Huff and AoA and like autism organizations. Gods, but there is a frakload of woo out there. And really nasty behavior on the part of the woo-ites. Like the threats that Dr. Offit receives. Not acceptable behavior period.

So, when this stuff hit, I emailed Dr Offit to ask if he'd like to rebut this latest round of trash talk. And, thankfully, he did.


Run with the permission of Dr. Offit:

Dear Kim,


Thanks for the support. At some point those who believe that vaccines cause autism will realize that I'm not their problem. The data are their problem. But I guess, absent supportive data, it's easier and more satifying to attack me (I would also like to point out that I didn't do any of these studies that exonerated vaccines as a cause of autism; I just explain them to the media).

Although it might sound crazy, I take some solace in the fact that those who oppose vaccines continue to get the facts wrong. It's somewhat reassuring to know that they hate me for the wrong reasons. And the Huffington Post blog by James Moore, a well-respected journalist, is completely off the mark. I would have expected more.

1) I am not a paid consultant to Merck.


2) I never "voted myself rich" while I was on the ACIP. RotaTeq came up for a vote in 2006, three years after I was no longer a voting member. And even if I were a member, I wouldn't have been allowed to vote. Further, I consistently declared my potential conflict. Although some people may find this hard to believe, I'm actually proud to be the co-inventor of the rotavirus vaccine and was more than happy to declare this at the beginning of every meeting.

3) What (the hell) does being the co-inventor of a vaccine have to do with standing up for the science of vaccine safety. It certainly doesn't affect my financial position one way or the other. I do it because I think that children are getting hurt by all of this (the same reason I went into pediatrics and worked on vaccines). The logic of the anti-vaccine folks escapes me here. Let me see if I've got this right; I invent a vaccine that can save as many as 2,000 lives a day so that I can make money so that I can lie about vaccine safety so I can hurt children.


4) I do not receive salary support or laboratory support from the Hilleman endowed chair. Five percent of that endowment does go to support members of our division, but not me.



5) I never received one penny of the $350,000 claimed in the Burton report. All of that money went to Dr. Fred Clark. I was totally supported by grants to NIH.

I really do appreciate your support, Kim. Few seem to be willing to stand up for me. And it does occasionally get me down. But mostly it just makes me angrier and more determined to hang in there.

Best,
Paul

9/08/2009

The NAA's got a plan: smear Offit the day before their "national" day of How Much Longer

I have a question. How much longer before folks wake up, wise up, and get over the woo and the woe? Oh my God. If you haven't heard of the NAA, they're certainly trying to make sure you do with this press release today on Offit, the day before they run their campaign to make autism look like a fate worse than death and the parents some of the whiniest, miserable crackpots around (wow, let it all out there, didn't I?). These folks make the "wackosphere" (as one of the AoAers calls the science based folks) at AoA look damn near reasonable.

They've got a letter to Obama that just defies description. Google their sorry rears (National Autism Association) because I am not linking to more than their lousy press release. And guess who has an online store to sell you the enzymes, supplements and other quackadoodlery that will heal (say it like a preacher would before he smacked you on the head to draw out the demons, would you, could you?) your vaccine damaged kids?

That's right. I've found someone worse than AoA.

Hard to believe, ain't it?


Oh, and someone called me a devil's advocate today because I have a problem with the lies and bullshit in this press release.

I'll be running a rebuttal from Paul Offit tomorrow as the main post and will try not to add too much posts around it so as not to distract from his words.






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

Censoring the truth about Offit at AoA

Second attempt: You keep running inaccurate information, though, and you know it. So, I'm going to go with intentional. Absolutely intentional.


Any reason exactly why you hate Offit so much? Is that rational, reasonable, sane?


Probably the same reasoning behind saying dentists are mental, huh?


http://counteringageofautism.blogspot.com/2009/09/paul-offits-mythical-millions-v-2-by.html


http://counteringageofautism.blogspot.com/2009/09/paul-offit-explains-money-side-of.html


Any chance you'll admit you consistently got it wrong?
 
 
First attempt was along the lines that this was a lie, they knew it was a lie, and I had the email from Offit showing the money amount and that it was posted at the blog.
 
 
Post yout attempts to get "heard" at AoA in the comments below. Let's give a show of just how many of us think AoA screwed the pooch on this one.

Paul Offit's Mythical Millions (v. 2) by David N. Brown

Paul Offit's Mythical Millions (v. 2)


By David N. Brown

This is a PUBLIC DOMAIN document (dated 8/18/09). It may be copied, forwarded, cited,

circulated or posted elsewhere. The author requests only that it not be altered from its current

form.

As I have written elsewhere, proponents of “vaccine-caused autism” and other dubious claims of

vaccine injury have long since come to rely on the doubtful premise that vaccines make their creators

rich, and that said creators thus have a financial motive and means to cover up vast numbers of vaccine

injuries. They have concentrated these allegations on Paul Offit, who has been especially vocal in

denying a link between vaccines and autism. He has been particularly condemned for allegedly

making a personal fortune of tens of millions from the Children's Hospital of Philadelphia's 2007 sale

of its rights to the patent on the Rotateq rotavirus vaccine. Most versions of this claim, mainly

circulating on the internet, either directly copy or cite (frequently inaccurately) a single article from the

blog Age of Autism. Written by Mark Blaxill and Dan Olmstead, it was provocatively (one may easily

say libelously) headlined, Voting Himself Rich: CDC Vaccine Adviser Made $29 Million Or More

After Using Role to Create Market. This article, and even less accurate and responsible secondary

literature, have created a large pool of disinformation, the sum total of which does not just to attack

Offit's credibility, but to present him as somehow powerful and sinister, and by extension reinforce

suspicion against vaccines and, for that matter, orthodox medicine in general Here are the major

myths, and the facts that refute them:

Myth 1: The inventor's share from the CHOP's sale was at least $29 million, and as high as $45M or

$55M.

Facts: I) Offit reports that the share was $18M, consistent with 10% gross as prescribed by

CHOP policy at the time the patent was filed (Bedside to Bench (in-house CHOP publication),

January 2007).

II. The $29M figure was suggested by Blaxill and Olmstead, based solely on the fact that the

hospital reported revenue of $153M rather than $182M. The difference is more likely to

represent the expense of arranging the sale.

III. The $45M figure, also suggested by AoA, was calculated as 30% of net ($153M) based on a

policy introduced in 2006. But there was apparently no attempt to apply the new policy to the

considerably older patent. Also, a significant theme in the 2006 revised policy is to broaden

eligibility for payment from the “inventor's share”. Hence, its application in the present case

might conceivably have reduced payment to the patent holders.

IV. The $55M figure, not endorsed by AoA, is undoubtedly calculated from 30% of the gross of the

sale. No past or present CHOP policy supports calculating the share on this basis.

Myth 2: Offit was paid the entirety of the inventor's share.

Fact: Offit is one of three inventors to put their names on the original patent, the others being Stanley

Plotkin and H. Fred Clark. AoA has denied that the other two patent holders were eligible for the

CHOP share, based on the fact that they previously received payment from the 2005 sale of the Wistar

Institute's rights to Rotateq. But Clark and Plotkin did hold positions at CHOP while Rotateq was

under development, and so had entirely valid claims to a part of the CHOP inventor's share. Offit has

confirmed that he and his coinventors received equal portions of the share, for a total of $6M each.

It deserves to be noted that, even if AoA's account had been accurate as far as the letter of patent policy,

it leaves a gaping hole in explaining how Offit could have exercised his claim without having to fight

for it in court. As it is, there would still seem to be ample grounds for a lawsuit against those who

received payment from many who did not, like the thirty-plus coauthors of Offit's pre-patent papers on

rotavirus. Two lessons can be learned: One is that patent laws and other policies centered on the

“individual inventor” are completely useless in addressing the realities of modern research science.

The other is that scientists are less litigious and “greedy” than typical members of the general public

might be under similar circumstances.

Myth 3: As CDC adviser, Offit voted for rotavirus vaccination to create a market for his own vaccine.

Fact: AoA maintains that it was inappropriate for Offit to participate in two votes related to rotavirus

vaccination. (See “Myth 4”.) This is a valid objection to his conduct. But any allegation that he was

influenced by conscious expectation of financial gain can be easily dismissed. From the perspective of

ca. 2000, any commercial success of Rotateq would have seemed a most improbable development. At

the time, the vaccine Rotashield was in position to dominate any market that might arise. If Rotashield

had not failed in trials, Rotateq might never even have been considered for commercial production. A

development which would have been even more unexpected was that annual Rotateq sales would be

over half a billion ($665 M in 2008) where decades of experience showed that even sales of very

important vaccines were relatively trivial.

Myth 4: As a CDC adviser, Offit voted to approve his own vaccine.

Fact: The vaccine on which Offit holds a patent, Rotateq, was never up for approval while Offit was

on the ACIP. The council did make three votes of long-term significance: the recommendation to

vaccinate against rotavirus, the approval of the Rotashield vaccine for that purpose, and the withdrawal

of approval for Rotashield. As duly noted by AoA, Offit voted in the first two votes, but recused

himself (while continuing to act in an advisory capacity) in the third.

Myth 5: Offit collects royalties on Rotateq.

Fact: As acknowledged by AoA, the 2007 transaction waived future royalties for CHOP and its staff in

exchange for a lump sum.

Myth 6: Offit denies vaccine-caused autism because of his financial interest in vaccines.

Fact: The vaccines alleged to cause autism are MMR and various ones containing thimerosal. Offit

has no financial or academic stake in these vaccines. In fact, he wasn't even alive when thimerosal was

introduced to vaccines (1942). Thus, he has nothing to gain or lose through any contribution to the

“controversy”.

David N. Brown is a semipro author, diagnosed with Asperger's Syndrome as an adult. Previous works

include the novels The Worlds of Naughtenny Moore, Walking Dead and Aliens Vs Exotroopers, and the

nonfiction ebook The Urban Legend of Vaccine-Caused Autism. This and other articles related to

autism are available free of charge at evilpossum.weebly.com.

Louise's Dumbass Rodeo

Louise from even Dumbasses offers this contribution (also available at their site --click on title to be taken to their site)



I know that my girl Thelma talked to ya'll yesterday bout what we doin this week an all. We on tha hunt for tha wild dumbass an such. Now our friend, Miss Kim, over at her blog rounded us up a whole truckload a dumbasses. She got herself a few a them time constraints, so she asked a couple a us for some help. Boy howdy! I understand time constraints an all! I am a popular gal in Vegas..I reckin there be plenty 'o times when one a my "friends" is a comin while another is a going! OOOEEEE! An a side o'box springs! You say goodbye and I say hello! Y'all smellin what I'ma cookin?




Yesterday, Thelma talked ta us about this Dr. Mark Hyman fella, gave us a link ta his website an all. I went back this mornin ta have me a closer look. Well jiggle my bosom an call it an earthquake! We found us a double dutch dumbass with a capitol ASS! This fella's a regular snake oil salesman. Talkin bout fixin broken brains an such! Broken Brains?? What in tha name a all things medical is that...? "This is the epidemic of depression, anxiety, memory loss, brain fog, attention deficit disorder or ADD, autism and dementia, just to give it a few names" Accordin ta this Dumbass, these "conditions" is caused by a" inflamed brain". "If your brain is inflamed, you feel nothing. Nothing that is, except depressed, unfocused,-or-worse-autistic or demented." Well pass tha "Preperation H" this man be thinkin with a inflamed hiney! A inflamed demented hiney! He aint nothin but a dumbass with hemmeroids.



Iffen ya take a look at his site, after every statement it says "buy the book now"..tells ya what he really about. Sellin books, sellin cures...makin scratch. Deceivin folks inta thinkin he got tha magic touch, tha answers they a lookin for, some secret knowledge ya aint gonna find anywhere else. For a price. He aint nothin but a pitchman, probably sells some a them "Sham-wows" on tha side!



Thelma my girl you was right on tha money with this un! We roped us a mighty fine dumbass-thats for true. Broken brains..shoot-more like breakin pocketbooks!