6/29/2009

Beyond Disgusted --work in progress

I have a busy day ahead, so this will be a work-in-progress blog as I have the opportunity to pop back in and deconstruct in agonizing detail what's wrong with this picture. I may even have to bite the bullet and go back and read Obradovric's part one and two again and do the same for them.

Suffice it to say that my first pass through this part three leaves me beyond disgusted with AoA and Obradovic for many reasons. The dishonesty in the two positions she provides is more than enough. Reminds me of Bush's 'you're either with us or against us' nonsense. Just like the spectrum, the positions parents take on their child's ASD depends on who they are, what they know, their coping skills, the degree of their child's impairment, and million other things.

I was watching Religulous last night; Maher asked a senior Vatican Priest, Father Reginald Foster what one did about people who believed nonsense (essentially, it was in the context of the priest mentioning that a survey of Italians showed Jesus was 6th on the list of saints they prayed to). The priest said there was nothing to do; “They just gotta live and die with their stupid ideas.” I sincerely hope that is not the case in this situation.

http://www.ageofautism.com/2009/06/14-studies-part-3-ladies-and-gentlemen-take-your-positions.html#more

My response (again, dare you, double dog dare you to have the guts to let any dissent or criticism on and to then allow any follow up comments on after the feeding begins):

If Age of Autism wished to be taken seriously in its deconstruction of the studies concerning autism and vaccines (actually more like 23), it would have given the organization at least a patina of credibility had it gotten a PhD in the field to do so.

What possible reason should parents follow the reasoning of someone with no science background? http://scienceblogs.com/insolence/2007/10/julie_deardoff_and_the_mercury_militia_d.php

Had you found a scientist with no "stake" in the matter, someone who neither worked for big bad pharma nor was clearly on the side of vaccines cause autism and had that person critique the studies, I might have nodded my head towards your stated intent by Olmstead to "follow the truth wherever it leads."

And, there are far more than two positions by parents concerning autism; to reduce it to what you consider your reasonable position (not) and everyone else wanting to let children with autism be completely untreated and unhelped is dishonest at best.

2 comments:

Connie said...

It seems to me that it's going to take someone "within the movement" to counter the most egregious kinds of articles and comments that are found at AoA. Lord knows they're certainly not going to run anything I might send them.

I remember a while back someone in the comments section claiming that the vaccine program in the United States is part of a plot by the U.S. government to control population -- the government "knows" that vaccines "kill a lot" of kids, so they encourage widespread vaccinations to keep population growth lower than it otherwise would be.

I wrote a rebuttal, but it didn't get past the moderators.

Now, in a previous post here, Craig W expressed disdain for some of the material that's posted at AoA. Good for him. Wouldn't it be wonderful if he tried to write an article along those lines for AoA? Or maybe send some emails directly to the folks who run the site, pointing out to them that the especially crazy articles and comments do very little to advance "the cause"?

Craig's posts here show me that not all of the "regulars" at AoA are eaten up with rage. But the rage is really hurting lots of people out here. It's hurting my family. Isn't there a way to tone it down?

I mean, my sister literally believes ANYTHING she reads on AoA. It doesn't matter if one thing contradicts something else. She believes it. She hates anyone who doesn't, and I think she's encouraged in her feelings by AoA.

Now, you might simply say that that's her personal problem, and it's up to her to sort out the good from the bad -- and it is, to some extent -- but the anger and crazy is tossed around so GLEEFULLY at AoA that sorting things out is really hard . . . especially when seldom is heard a discouraging word.

To cite one thing Craig mentioned previously, he obviously loaths Dr. Andrew Moulden. My sister thinks he's a genius. It would be really helpful -- not just for her, but for others like her (and I assure you, there are many) -- if one of the trusted regulars like Craig wrote something critical about him. Not just a comment, but an article. A few buried comments wouldn't have nearly the same impact as some well-spoken articles.

I'm afraid I'm being more disjointed here than usual -- rough day, sorry -- but I hope I'm getting my main point across at least. Folks like me or Kim have zero chance of helping people at AoA dial back the anger and outrage. Because we're not "believers," and therefore anything we say is rejected. (That's certainly how my sister treats ME.)

But folks like Craig COULD help.

And it's needed. It's so needed. So many people out here are simply not moving on with their lives, and with their kids, because it's being drummed into them that they SHOULD be angry and they SHOULD feel like victims and that's ALL they should feel and if they don't then they don't want to help their kids.

And that's hurting kids like my nephew -- and my neurotypical nieces -- an awful lot.

KWombles said...

Connie,

You make excellent points as always. And bring a personal expression to the harm that AoA can do.

I hope you'll join the Facebook group and add your story and this post to the group's discussion board. It would enrich the group and provide a perspective that parents in the middle of the initial anguish (which some hold onto for longer) might not have imagined: what it feels like for a sibling to watch as the brother or sister spirals into depression, bitterness, and rage when his or her child is diagnosed with autism.

My hope, at least, is that we can provide realistic perspectives on autism, on parenting children with autism, whatever the level of functioning, and on coping adaptively. And on making sound, rational decisions on therapies, based on the sound scientific evidence for the efficacy of the treatments.