Wednesday, March 07, 2007

Fear Pressure

For some time now, I’ve wondered why promoters of the mercury-causes-autism get so hostile when they talk to us skeptics. Time after time, I’ve been accused of:

[1] Preventing parents from treating their children with (insert therapy).

[2] Preventing parents from hearing about (insert therapy).

[3] Keeping kids from getting (insert therapy).

This, of course, is utter nonsense.

I’m not standing in the way of parents who want to “treat” their autistic children with whatever voodoo they want to use. I’m just a single person writing a single ‘blog – I’m not blockading their homes, picketing “supplement” stores or standing in the doorway of even one DAN! doctor.

Parents have a wide variety of woo-based websites, parental support groups, newsletters etc. to inform them of the latest in woo-based autism therapies. I can’t hope to compete with the amount of baloney available to parents. I’m just a single voice shouting (actually, writing) in the wilderness.

I’m not hacking websites (although folks on the “other side” have done that), I’m not buying up web domains with similar names (although folks on the “other side” have done that) and I’m not trying to harass, intimidate or litigate against people who want to tell their side of the story (although folks on the “other side” have done that).

Finally, I’m not doing anything to keep the children from getting whatever therapies – woo or otherwise – their parents see fit to inflict on them. Nothing but quietly telling my side of the story.

Yet, they are offended by my skepticism. More than offended – enraged. People have said things to me and about me that are offensive, accused me of base and dishonorable behaviors and have told me – in no uncertain terms – to SHUT THE F**K UP!

Why does my lack of belief in their viewpoint make them so angry?

To be honest, it’s not just me. They seem to hate anybody who’s not on board with their “program”. And "hate" is the correct word - make no mistake about that.

A few days ago I found myself with a bit of unstructured free time, so I decided to spend the time trying to understand the anger I seem to provoke in the mercury-causes-autism believers.

I started by imagining that I had a child with a poorly-understood disability of unknown origin and uncertain prognosis. That was the easy part.

Then, I pictured what it would be like to have someone – or a group of someones – tell me that they had discovered THE CAUSE and THE CURE of the dread illness that was afflicting my child. So far, so good.

Then I tried to imagine what it would be like to have other people, perhaps people with expertise in medicine and science, disagree with THE CAUSE and THE CURE.

How would that make me feel?

Frankly, I was at a loss to see why I would give two shakes of a lab-rat’s tail what the “experts” might think if I had (or thought I had) a cure for my child’s ailment. As long as they weren’t getting in my way, why should I care they thought?

After all, in the post-modern world, people ignore the experts all the time. In the US, they’ve raised it to a cultural icon. The only thing that “the people” distrust more than “experts” is “the government”.

Indeed.

But then I considered how I would feel if I was doubtful about whether or not THE CURE worked.

That would change things. A lot.

If I was harboring secret doubts, doubts that I scarce could admit to myself, then someone else doubting THE CAUSE and THE CURE would be a big problem.

As long as everyone around me was chanting the party line (“Mercury causes autism and chelation is its cure.”), I could bury my own doubts. After all, if I was the only person with doubts, then it must be true.

Right?

But once I started to hear other people doubting THE CURE or THE CAUSE then my own doubts would start gnawing at me. They’d start keeping me up nights.

And why, you might ask, would I have doubts?

Well, maybe the improvement wasn’t as dramatic as I was making it out to be. Of course, my child was getting better, but he wasn’t CURED, not like all the other kids were being CURED. And the other kids I saw, they weren’t as CURED as they were made out to be.

Of course, I wouldn’t be tactless (or stupid) enough to tell the other parents that their “recovered” kids didn’t look all that “recovered” to me. And I certainly wouldn’t be bold enough to say that I didn’t think that my child’s improvement was as much as I expected, based on their descriptions.

Of course not. That would be like saying…oh, I don’t know…like saying, “The Emperor has no clothes!”

And we wouldn’t want to say that, would we?

So, what are my options? I can’t admit to myself – or my spouse or fellow mercury-causes-autism parents – that I have doubts about THE CURE or THE CAUSE. That would cause unacceptable mental anguish, since I’d not only have to admit that I was wrong (never an easy thing to do, in the best of circumstances), I’d have to admit that I didn’t have a cure for my child’s illness.

That’s not going to happen. Uh-uh. Nope. Never.

And the other option? I can get angry at the doubters. I can accuse them of bias, corruption, ignorance, arrogance, insensitivity, or whatever else comes to mind. I can circle the wagons and excommunicate anyone who admits to doubt.

And why would I do these things?

Because I’m afraid.

Very afraid.

Because without THE CAUSE and THE CURE, I’d have nothing to offer my ailing child.
I would be defeated.
I would have no hope.

Or so I might think.

So, when the mercury-causes-autism proponents take their next poke at me, I’m going to try my very best to remember that, although their actions are hostile and belligerent, they aren’t really angry with me.

They’re just afraid that I might burst their bubble. That I might force them to face their own doubts.

And they’re not ready for that.

Yet.


Prometheus

15 Comments:

Blogger David N. Andrews MEd (Distinction) said...

"They’re just afraid that I might burst their bubble. That I might force them to face their own doubts.

And they’re not ready for that.

Yet."

Correct.

And I'm not sure that the vast majority of them will be ready. Abubakar's parents should have listened to any doubts they had before leaving the UK.

The title of this post is very accurate indeed as a descriptor of how that particular 'gospel' gets spread.

08 March, 2007 01:16  
Anonymous Ms. Clark said...

I think you hit the nail on the head. The other thing that enrages them, in my opinion is that some of them have big hopes in a big payoff from some law suit and they don't want anyone messing with their chances of getting that payoff. It would appear that some (many) of the current parents signed on to the Omnibus autism lawsuit, don't have kids with solid autism or ASD diangoses at all, maybe their kid flapped in front of the doctor once, and got a shakey provisional ASD dx, that over time proved to be wrong, or maybe these people are like the ones who are caught on camera deliberately throwing themselves down on the floor in a supermarket in order to sue the owners for some non-existent negligence.

Maybe they are kind of like the mom in Washington state who raised a couple kids getting money from SSI or something, by teaching them to act "retarded," when they were actually normal.

I think at least half, maybe many more than half of the parents who are enraged at us are more like you describe, they are something like victims of a cult and afraid to lose all their world-view (and maybe lots of their new mercury friends) if they let go of their beliefs. They have heroes, too, that they'd have to see as badly in error, at least. Too much cognitive dissonance hurts, people avoid it.

08 March, 2007 01:24  
Blogger mcewen said...

Excellent posting. Fear is powerful and we can't be expected to cope well with cognitive dissonance.
Best wishes

08 March, 2007 05:44  
Blogger notmercury said...

Somewhere along the way, the parent of a newly diagnosed child will discover a group of parents who appear vastly more intelligent and better informed than they are.

Whether it is in person or through internet groups, the parent will be awed by how much these other parents know about autism and treatments they probably haven't heard of before.

Spend enough time listening to other people in your same situation as they discuss these things as granted and it becomes very easy to believe these stories of hope.

Now if the parent has come to admire some of these other brilliant parents then it's very easy to transfer those feelings of admiration and respect over to the doctors or scientists they respect.

They may not fully understand the science involved but they know people who seem to understand it and that's good enough for them.

Once a person becomes invested in a treatment plan, and the person or persons offering the treatment, they will want to resist anything that forces them to cast a critical eye toward their source of inspiration and hope. It's even more difficult when the parent sees the professional as a friend and they feel a sense of privilege with the relationship.

It's nearly impossible to remain objective in that situation and entirely understandable when a parent defends one of these professionals and their treatments no matter how scientifically unsound or dangerous it seems to others.

08 March, 2007 05:52  
Blogger Bartholomew Cubbins said...

I remember the day when I realized that guilt sucks and that my child's autism is due to me just like his eye color is due to me. I love the whole package. That day was an important milestone in my neurodevelopment.

I'm still avid in my search to understand the roots of autism, but the shift that occured that day helped me to see what's really important in life.

Great post, P.

08 March, 2007 06:36  
Anonymous Anonymous said...

You've got that right. The amount of vituperation spewed is inversely proportional to one's confidence in the notion that one is defending.

08 March, 2007 07:30  
Blogger Club 166 said...

I started off LMAO at your post, and finished reading it with a warm smile on my face.

I think you've gotten to the (psychological) heart of the matter, and you've stated this better than anyone else I've seen.

08 March, 2007 08:57  
Blogger Another Autism Mom said...

I don't think they're angry because they are having doubts. It's quite the opposite. They are angry because they are fervent believers in the theory that vaccines (thimerosal or MMR) caused their child's autism, and they can't understand why mainstream science is not following this lead. They think it is a major conspiracy from CDC and "Big Pharma" that is preventing the "truth" to be revealed and spread out. It is exactly like a fundamentalist religious group, trying to impose their point of view to the world and casting their wrath at the "infidels".

Their radicalism is pathetic. The other day I read an extremely rude e-mail from Generation Rescue's JB Handley (making its rounds on the parents' discussion lists) bashing Autism Speaks and personally attacking its directors, because they are not promoting DAN doctors and the DAN protocol in their website, and because, in his words, Autism Speaks is "pissing their money down the genetic rathole" instead of the vaccine-causes-autism theory. One of his laughable points is that he thinks the Wrights are guilty of "listening to dinosaurs with degrees instead of their daughter, Deirdre Imus, and others speaking the truth, myself included."

08 March, 2007 10:34  
Blogger Prometheus said...

As Another Autistic Mom so clearly put it, some of the hostile and aggressive people involved in the mercury-causes-autism movement ("Mercury causes autism and chelation is its cure"...say it over and over again until the doubt goes away) have created a new religion.

Still, I have to wonder if fear isn't a large part of their reaction to resistance to their ideas. Rather than accept that "mainstream" science and medicine are not ready (and may never be "ready") to accept their mercury-causes-autism "theory", they spin a story of corruption, cover-up, conspiracy and greed.

The "true believers" are afraid that they might be wrong, and so need to have some reason to discount what the "mainstream" scientists and doctors say - which is usually "There is little or no data to support that claim - and there is ample data refuting it."

Again, given the choice between doubting their own, often uninformed (or parroted), beliefs or believing in a massive and pervasive conspiracy, they make their choice based on fear.

When it comes right down to it, which scenario is more likely:

[a] The CDC, "mainstream" medicine and a grand majority of scientists researching the field are all involved in a conspiracy to hide the true cause of autism and to suppress an effective treatment.

[b] A few thousand people have convinced themselves that autism is caused by mercury and treated by chelation and have perseverated in that belief despite mountains of data to the contrary.

I'd bet on [b].



Prometheus

08 March, 2007 20:28  
Blogger Fore Sam said...

If you were to disagree with me publicly about the horses I choose, I'd be very happy. Uninformed people would listen to you and my odds would go up.
In this case, when uninformed people listen to you, their kids don't get the help they need. I don't like watching kids suffer the way my kid suffers. It does not have to happen to any more babies. Thimerosal needs to be gone from ALL shots, worldwide. Their is no justification for continuing to use it. You can not justify knocking treatments that cure kids.

08 March, 2007 21:30  
Blogger Kev said...

I can get pretty annoyed on occasion but my annoyance usually follows some patronising person telling me they'll pray for my child (because I'm not chelating them you see), but the anger and the threats of violence I have read that come from the mercury boys and girls is pretty incredible. Not just that it exists but its raw, deep seated hatred.

A lot of it is fear but a lot of it is also bewilderment.

The rich people (which to a lot of people equates to 'better' or 'smarter') at Gen Res or SafeMinds told 'em it was vaccines and promised them proof. When people like us point out that there isn't any then they act like anyone who's been hoodwinked - people don't like to think of themselves as gullible so they lash out at the messenger and the message.

09 March, 2007 06:35  
Blogger Prometheus said...

Fore Sam implies that when "...uninformed people..." listen to me, they get bad information. The corrolary to that would be that when they listen to him or others of his ilk, they get "good" information.

By this, I assume that he feels that his opinion is "informed". That would imply that Fore Sam has some data showing that chelation is better than placebo at treating autism. Or at least better than no treatment at all.

If so, I'm all ears (eyes). Bring it out and let us all bask in the glow of your data, Fore Sam.

We're waiting. Still waiting.

Fore Sam then goes on to say "You can not justify knocking treatments that cure kids."

Absolutely true. Couldn't agree more.

However, chelation for autism hasn't been shown to be more effective than either placebo or no treatment at all.

When (if) chelation is shown to be effective, I'll be behind it 100%. Until then, I'm not "knocking" it, I'm just stating a fact - it hasn't been shown to be effective.

Show me the data.

Please.

Pretty please.


Prometheus

09 March, 2007 10:15  
Anonymous anonimouse said...

I think it's become increasingly clear to me that the autism-mercury "movement" - while perhaps not being a true cult - certainly has cult-like elements:

-They display zealous and unquestioning belief in the mercury/autism hypothesis.

-They strongly discourage dissent and ostracise anyone who choose to disagree with the hypothesis.

-They strongly encourage (to the point of almost dictating) how parents should treat their children - what kind of foods they should eat, what schools they should send them, what other therapies they should get involved in.

-They have elitist qualities and their leaders are narcissistic enough to believe that they know more than generations of scientists who have studied the issue.

-They have an us vs. them mentality.

-They have an "ends justifies the means" mentality.

-They engage in peer pressure and persuasion to convince individuals to continue to pursue treatments related to the autism/mercury hypothesis.

-They try to convince folks that friends and family members who disagree with the mercury/autism hypothesis are not acting in the best interest of the child and should be ignored.

-The groups are preoccupied with bringing in new members and raising money.

I can go on, but you get the idea.

What is happening is that the autism/mercury groups are creating an environment that is (at least on the surface) welcoming, inviting and hopeful. They talk about recovery and cure and it sounds great to a parent who may be confused about what autism is or what it means to their child. It becomes a very difficult thing to break away from the comfort zone, even if you realize that the time and money you're spending isn't getting you the results you'd hoped for.

http://www.csj.org/infoserv_cult101/checklis.htm

09 March, 2007 11:30  
Blogger Bronze Dog said...

I've been recently tempted to move to Missouri, just so that I can say I'm from The "Show Me" State.

So far, all Fore Sam's done is get himself caught pretty well in the top center of this flowchart, minus the anti-Randi sentiment.

09 March, 2007 20:17  
Blogger Ruth said...

Bronze Dog-

We moved to Missouri 2 years ago-there is lots of woo here, search for MO-FEAT to read about the local Hg militia.

(Also lots of great spec ed teachers, OT's, etc)

15 March, 2007 08:17  

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