Tuesday, May 29, 2007

The Next Revolution?

As the chelationistas rediscover/redefine/remarket themselves, surely there are parents who are feeling a little misled, deceived or perhaps even exploited. Maybe it's time for another "revolution" in autism? And this time, it's the chelationistas who need to be overthrown.

For years, the various organizations representing the chelationistas have been telling parents that they are their advocates, that they respect parents, listen to parents and learn from parents. It's the "other side" - the doctors, "the government" and, worst of all, Big Pharma (cue spooky music) that lies to parents, disrespects parents, ignores parents.

Now, it turns out, the chelationistas are admitting that they don't respect parents - they don't even trust the parents' intelligence enough to tell them the whole truth. And telling less than the whole truth is....that's right; lying.

The chelationistas are now claiming that they knew all along that autism wasn't just mercury poisoning - despite earlier claims to the contrary (see here, also). The fact that they didn't tell parents is explained as "not wanting to confuse the issue". Or, it could be argued, not wanting to risk losing parents' support on a complicated and complex issue.

So, the chelationistas respect parents, but not enough to tell them the truth.

And the chelationistas listen to parents, but don't hear them when they say, "we want the facts".

And the chelationistas learn from parents, but only in order to better market their product.

Many people may now find themselves unsure when the chelationistas are telling the truth (hint: only when their lips aren't moving).

After all, if it is true - as the chelationista revisionistic propaganda says - that the chelationistas hid the full scope of possible causes of autism from the parents, then those parent have the right - no, the duty - to ask a simple question:






Why?







Ironically, it appears - again, from the chelationistas' own "clarifications" - that the chelationistas didn't trust the parents' ability to understand a more complex issue. The chelationistas didn't want to muddy the water with facts.

In other words, they are claiming that they lied to parents in order to further the chelationista movement.

Funny - that's pretty much what the chelationistas accuse the government and "mainstream medicine" of doing.

Of course, another possibility is that the chelationistas really did believe that mercury caused autism (and may still believe so) but are afraid that parents will start to doubt them as the mountain of data refuting the mercury-causes-autism hypothesis bears down. So, in order to keep from looking like uninformed dolts, they lie about having known "all along" that autism was "more complex than just mercury poisoning".

Either way, the chelationistas have been caught in a lie.

Now, the majority of parents caught up in the chelationista's web will buy the "clarification" and will not be offended by the blatant condescension that it contains. A few will have their eyes opened and will leave. Most will leave quietly, burning in silent resentment, but we can only hope that a couple of parents are angry enough at this travesty to lead a revolt.

After all, the only way to bring down a cult is from the inside.

I have a theme song in mind for this revolt:



Devo, Jerkin' back 'n' forth
(from the album "New Traditionalists")

I know I let you tell me what to do
You were confident, you knew best
Now things aren't working like you want them to
Your confidence is what I detest

You got me lookin' up high
You got me searchin' down low
You got me - I know you know
You got me jerkin' back 'n' forth



That pretty much sums it up, doesn't it?

It's time for parents of autistic children to stand up and say they won't be manipulated, deceived or dismissed - not even by organizations that claim to represent them. It's time for parents of autistic children to demand the truth - especially from organizations that claim to represent them.

It's time for a new revolution.


Prometheus

11 Comments:

Blogger laurentius rex said...

Will not be televised, but it may appear on youtube :)

http://www.youtube.com/watch?v=uTCQSk2l8bc

29 May, 2007 12:23  
Anonymous Ms. Clark said...

I hope a few hundred thousand parents vote with their feet and decide to get help from people who don't lie and don't promise the moon. That leaves out all the major autism organizations in the US. There are non-spectific-to-autism organizations that might be a better way to get help. Places like ARC that used to help "retarded" people and in doing so always have helped autistic people, too. (as many autistic would have been thought of as merely "retarded" and many are or seem to be both). I hesitate to say tha anyone should start a new organization. If they could toss out all the chelationistas from ASA it might be able to be rehabilitated, though it was founded by Bernie Rimland, so it might be unremediable.

29 May, 2007 19:37  
Blogger Bartholomew Cubbins said...

So Prometheus = Che Rivera?

"And the chelationistas learn from parents, but only in order to better market their product."

Such a beautiful scam.

Nice post.

29 May, 2007 19:41  
Blogger Prometheus said...

BC,

Did you mean Che Guevara? Or did I miss the joke (not the first time, I assure you)?

I have a hard time seeing myself as a Che Guevara type - mostly because of the beard, which I can't seem to grow.

Ms. Clark,

I truly wish that there was a bricks-and-mortar organization that parents could turn to that would give them support, help, a shoulder to cry on and good, practical advice without trying to get them started on some Alice-in-Wonderland, down-the-rabbit-hole treadmill of untested interventional therapies.

Wouldn't it be nice if parents of autistic children - or children with any disability - could go somewhere to just be and not have to do?

Over time, I have begun to see that many, if not all, parents of autistic children go through a period of blaming and a period of frantic cure-searching before they (or at least most of them) settle down to quiet acceptance. I've tried to help people avoid this time-consuming, energy-sucking and money-squandering phase, but I'm beginning to believe that it cannot be bypassed. It seems to be one of Kubler-Ross' stages of grief - an immutable part of the process.

I'd appreciate hearing from readers on this topic. Is it inevitable that parents will go through a period of blaming and cure-searching after receiving the news that their child is autistic? Are there any parents out there who managed to skip it?


Prometheus

30 May, 2007 14:49  
Blogger Bartholomew Cubbins said...

no joke, just a casualty of not previewing.

About your poll - I didn't manage to skip the blame/cure phase.

30 May, 2007 21:28  
Blogger Prometheus said...

BC,

Thanks for the info - I didn't skip the blame or cure stages either; I suspect few people do. What concerns me is that certain organizations (that shall go nameless) seem to exist solely to keep parents fixated in those stages.

This can't be good - not for the parents, not for the children and not for society as a whole.

Prometheus (the beardless)

31 May, 2007 13:38  
Blogger Do'C said...

I did manage to skip the blame/cure phase. I'm not sure I can say the same for my wife, although she didn't spend too much time there. How was I able to skip it (and her for the most part)? I think the answer is complex, but a few key pieces stand out.

A. I had experience with life-altering events (a severed limb) that helped me understand the role of adapting to non-reversibility way ahead of time (although that wasn't an overnight thing at the time).

Blogged Here

B. We had a diagnosing doctor who was reality-based - a complete straight shooter.

Blogged Here

C. A handful of websites like Autism Diva, Left Brain/Right Brain, and Quackwatch/Autism-Watch provided great discussion material for my wife and I.

Blogged Here

D. A reality-based early intervention team whose focus was family-based education for the whole family, not "fixin".

31 May, 2007 20:38  
Blogger mumkeepingsane said...

I mostly skipped that stage although not completely.

I knew Patrick was autistic almost a full year before the final diagnosis came through (it took that long to get him through the system). I DID do a heavy metals test (which was negative) and I did read A LOT about cures, causes, etc. But while I read that stuff I recognized the garbage for being just that.

I didn't really go through the emotional "I've gotta find a cure, I've gotta blame someone/something" rollercoaster that I hear about. I did cry. I did wonder "why me". I did worry and angst over his future and prognosis. But this only lasted for a few days. I quickly learned that my son was a gift and the best thing I could do for him was give him the most opportunites to realize his full potential...focusing on education and support.

01 June, 2007 07:53  
Blogger Phil Schwarz said...

Bricks-and-mortar, face-to-face support groups that do not pressure families new to a diagnosis about how time is running out to "cure" or "recover" their child: one such is up and running in Toronto, through the efforts of the Autism Acceptance Project: http://www.taaproject.com

Another organization to turn to is the Autism National Committee, http://www.autcom.org -- since 1990, they have been at the forefront of the struggle for civil and human rights for autistic people and empowerment of autistic people through adaptive communication technology and strategy.

And finally, there are now two annual conferences produced by autistic people for autistic people (and their families and supporters): Autreat, in North America (June 25-29 this year in Philadelphia -- see http://www.ani.ac), and Autscape, in Europe (August 7-10 this year in Bath, England -- see http://www.autscape.org).

All of these organizations and venues promote constructive alternatives to the "autism-is-tragedy" and "cure-at-any-costs" messages most families new to a diagnosis are inundated with.

At Autreat this year, there will be an evening discussion about how to support groups in other cities who want to replicate what TAAP is doing in Toronto.

-- Phil Schwarz
Aspie father of an autistic son and a daughter in the broader phenotype, and married to a loving and patient nonautistic spouse

And also vice-president of the Asperger's Association of New England, http://www.aane.org -- another constructive alternative bricks-and-mortar/face-to-face autism spectrum community here in the Boston area and in chapters across the rest of New England

04 June, 2007 21:02  
Blogger Prometheus said...

Phil,

Thanks for the information - I hope that it will be of help to people out there.

Unfortunately, the "autism-is-a-tragedy" and "cure-autism-at-any-cost" (even death) message gets more "air time", because it is more in line with the catastrophism that the new media prefer.

Anyone else who knows of organisations that support autistic people and their families without trying to prosletize them into the Church of Cure, please get the word out. There are a lot of desperate parents who are looking for some words of comfort and encouragement - and all they're getting are words of panic and cure-seeking.


Prometheus

05 June, 2007 09:38  
Anonymous HCN said...

Perhaps it is an odd blessing that my son's seizures were when he was barely 48 hours old. I was certainly thankful they happened while we were still in the hospital...

But, still... with those long periods of him shaking and staring off knowing that sporatic electrical impulses were going on in his brain, along with the year on phenobarbitol --- it is not surprising that something was actually wrong.

Granted, if he had learned to speak and be like other children the seizures would just fade into a story we would tell occasionally. But, no... they turned into a reason for him not be vaccinated against pertussis, a reason for 10 years of speech/language therapy, a reason to get to know too many neurologists... and a way to find out about the "vaccine caused my kid to not be normal" faction.

sigh

Well, at least my younger kids benefitted by me being more relaxed with their normal behavior. (note: My younger son thinks the authors of the cartoon "Zits" has a camera planted in our house!)

12 June, 2007 22:06  

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