Off to Skepticon...

As this goes live I’ll be heading to the airport, my purpose being to wing my way to Skepticon 7, where I’ll be speaking tomorrow on a little ditty I like to call The Central Dogma of Alternative Medicine. It’ll be fun, and I’m looking forward to it. However, in true Orac fashion, I haven’t finished the slides and outline for my talk yet, something I hope to do on the planes (there are no direct flights to Springfield, MO from here) and the 3+ hour layover I have to look forward to in Chicago.

What this means is that I was busily tweaking my talk and making some slides last night instead of laying down the insolence you all know and crave every day. Such is life. It happens sometimes. You should, however, donate to Skepticon. It is, after all, free to attendees, which is amazing.

As for today, I guess we’ll just have to have an open thread. Of course, there is one thing that came up in my woo feed that you might want to use as a chew toy. Why it came up now, given that it’s a couple of months old, I don’t know, but it demonstrates a very significant principle in skepticism: Just because you’re a scientist in one area doesn’t mean you can’t be seduced by pseudoscience in others, even an area fairly closely related to your own. I’m referring to this article on Dr. Theresa Deisher, the molecular biologist who really should know better but doesn’t. She’s the one who found fragments of fetal DNA in various vaccines and, in this article, is claiming:

“It is possible that these contaminating fragments could be incorporated into a child’s genome and disrupt normal gene function, leading to autistic phenotypes.”

As someone with a not-insignificant molecular biology background and published papers in molecular biology, I hang my head in shame at such BS. I can understand why a pathologist might fall for such a ridiculous idea, but Deisher should know better.

Anyway, talk amongst yourselves. If something interesting happens at Skepticon, maybe I’ll write about it. In the meantime, off to the airport and continued tweaking of my talk. At least the weather there is a lot warmer than it’s been around here lately.

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As a pathologist, I THINK I've just been insulted!

Most pathologists I know do know batter.

By Michael Finfer, MD (not verified) on 21 Nov 2014 #permalink

I also think I may have been insulted, but I had a recent flu shot and may be suffering from thimerisol-induced dementia.

By Richard McMast… (not verified) on 21 Nov 2014 #permalink

I suspect that no scientific discipline is entirely immune from anti-vax tropes.[1] Earlier this week one of my LinkedIn contacts, a Ph.D. physicist (and bona fide rocket scientist), liked a post which was obviously anti-vax.

[1]Thank you. I'll be here all week. Remember to tip your server.

By Eric Lund (not verified) on 21 Nov 2014 #permalink

I'm not insulting pathologists. I'm just noting that physicians are not scientists and, having seen so many of them fall for pseudoscience in the past (and documenting it among many physician specialties), it doesn't surprise me that a pathologist would fall for something like this, any more than it surprises me that a neurosurgeon would fall for creationism or various physician specialties would fall for all sorts of quackery. That's all.

Of all the scientists who fall for woo, I think I was- and remain- most disappointed in Luc Montagnier. He made a truly significant discovery and then, years later I hear that he gives talks to the woo-entranced. It's abysmal and awful.

It seems that anti-vaxxers have certainly enlisted fallen scientists for their woo. It must be a long list by now.

-btw- Unfortunately, I won't need a plane but tomorrow I have to take a train somewhere ( roundtrip) however I'll get to see something involving anthropology and maybe some fine art.

@ Eric Lund:

We have ways to immunize for that!

By Denice Walter (not verified) on 21 Nov 2014 #permalink

I think this is the ideal place for me to drop this, which made me furious earlier today. At AoA, Kim Stagliano has written this:

By the way, my girls will never need birth control for the traditional reasons of family planning - because they DO have autism.

This just reinforces my view that the likes of Stagliano don't see people with autism as human. Do autistic people not have feelings for others, fall in love, have sex? Clearly not in Stagliano's world. Horrible, horrible people.

By Rebecca Fisher (not verified) on 21 Nov 2014 #permalink

Denice: Montagnier "made a truly significant discovery".

I've always been inclined to think that Françoise Barré-Sinoussi did that, but I'm prepared to be put right on the point.

By Brian Deer (not verified) on 21 Nov 2014 #permalink

Saw that work, and thought wow cool bio experiment. Saw the analysis thought wtf, did she really go Type1 intentionally??

Got my dose of thimerosal today. Mr Woo is even considering one.

By Lisa Beck (not verified) on 21 Nov 2014 #permalink

Do autistic people not have feelings for others, fall in love, have sex?

Of course they do. One of the principal characters in The Big Short, the guy who made a fortune by reading the prospectuses on a bunch of mortgage-backed securities and shorting the most egregious of them, learned that he was autistic after his son was so diagnosed--and he realized that the symptoms the doctor was describing in his son also applied to him.

I also have a neighbor who, as I may have mentioned before, may be autistic. (I don't know for sure because it's none of my business.) I don't know his current relationship status, but he has had girlfriends.

So yes, I think Ms. Stagliano will be in for a rude surprise when her daughters reach a certain age. Unless she is so monstrous as to prevent any contact with boys, that is.

By Eric Lund (not verified) on 21 Nov 2014 #permalink

@ Brian Deer:

I've heard similarly about that-
I should have said, " He has been recognized for a significant discovery" -
HOWEVER I doubt that that situation is so very rare- you know, women in labs, in offices, in studios etc. which is possibly changing.

By Denice Walter (not verified) on 21 Nov 2014 #permalink

So yes, I think Ms. Stagliano will be in for a rude surprise when her daughters reach a certain age.

Unless she has been telling them their entire lives that they're damaged goods and can't expect to lead lives like other girls; that might be an inhibitor.

@ Rebecca Fisher:

Oh, you are so correct.
I always wonder how much parents with issues of their own work against their children's independence and developing their own personality' - and not just when ASDs or SMIs are involved.

Because of her association with a group of care workers ( VOR) , I imagine that she plans to have one or more of her daughters placed in an institutional setting eventually
.
Interestingly enough, I've read a little about sexual expression in institutions- see Jay Neugeberger's books for a brief look from a non-scientist.

Now there's a topic for an open thread:
Sexual expression- in general or in particular.

By Denice Walter (not verified) on 21 Nov 2014 #permalink

@ lilady:

Sure. How about her 'sponge-worthy' essay?
Like seriously- what does a person's ( Jerry's) sexual desirability have to do with his comments? And furthermore, how does this relate to *her*?
Does she not realise that altho' she may enjoy comedians, she ain't one.

-btw- this computer is a b!tch for corrections and edits.

By Denice Walter (not verified) on 21 Nov 2014 #permalink

I have said all I am going to say about Ms. Stagliano. I wish the very best for her girls as they grow.

Since nothing is off-topic today (enjoy your trip, Orac!) I commend to you this article on sexual expression in one institution.

LA Weekly: In the Gay Wing of L.A. Men's Central Jail, It's Not Shanks and Muggings But Hand-Sewn Gowns and Tears

MCJ’s gay wing was set up in response to a 1985 ACLU lawsuit, which aimed to protect homosexual inmates from a higher threat of physical violence than heterosexuals faced. But something unexpected has happened. The inmates are safer now, yes. But they’ve surprised everyone, perhaps even themselves, by setting up a small and flourishing society behind bars. Once released, some re-offend in order to be with an inmate they love. There are hatreds and occasionally even severe violence, but there is also friendship, community, love — and, especially, harmless rule-bending to dress up like models or decorate their bunks, often via devious means.

Pardon my Teutonic:
The guy's name is NeugeBOREN.

By Denice Walter (not verified) on 21 Nov 2014 #permalink

Denice, could you check the spelling of "Jay Neugeberger"? Went looking for his books and could only find this post and a previous one from you.

@ Liz:

See how quickly I responded?

My error illustrates a few principles of LTM with which I won't trouble you.

By Denice Walter (not verified) on 21 Nov 2014 #permalink

For a glimpse into Neugeborn's writings on his brother

And just as I had been wondering how it could be that the spirited young man I had grown up with had turned into a debilitated, lifeless old man, so I now wondered about the mystery--and miracle--of his resilience. It never ceased to amaze: that people who had had the most wretched and unenviable lives were able, as Robert was, to survive and to do more than survive: to retain an ability to be themselves in all the complexities and contradictions of their identity, history, and feelings, and to be capable still of taking ordinary pleasure in this often cruel and incomprehensible world.

Heh. Telepathy. Also:

My memory is excellent -- it's the recall that's shot.

Eric Lund @5 -- Jeez! I hope this errant rocket scientist isn't one of our mutual acquaintances!

I mean, errant rockets are no joke!

By palindrom (not verified) on 21 Nov 2014 #permalink

Unless she has been telling them their entire lives that they’re damaged goods and can’t expect to lead lives like other girls; that might be an inhibitor.

Which means they'll be easy targets for any (emotional) predator, alas. So, yeah, Papa's in for a big surprise in a few years. Sigh.

It is truly despicable for a mother to think so about her own children. All I want in this life is for my child to be happy. Whether he be gay or straight, neurotypical or not, to be happy and have a good life. Love him to pieces. He is very outgoing and we have worked very hard to instill politeness. Today we went to lunch together (hubby and baby surprised mommy and took me to lunch) and he walked into the restaurant, waved at the greeter. Told him very politely Hi! I would like to order lunch please! Apparently he was really hungry today. It makes me sad that woman would think so poorly of her own babies. I would be doing everything to make sure they were able to live as independently as possible. Best of luck to the sweeties.

@ Kiiri:

Agreed.

Some AoA/ TMR parents parade their children's disabilities either in writing or in videos ( I'm sure you know to whom I'm referring- more than one person, -btw-). How does the child/ young adult feel if perchance he or she stumbles upon that? Probably not happy. I'd have been pretty angry or embarrassed if I found something like that displayed PUBLICLY when I was that age- disabled or not. All to showcase Mama"s martyrdom or forays into quasi-journalism.

Fortunately, my own late mother didn't brag or complain about my activities where everyone could read it.
And I gave her lots to complain about- including style that irked her mid-century fashion sensibilities. She was pleased that I had excellent grades, didn't get pregnant or addicted - and managed to travel about and not get arrested.

By Denice Walter (not verified) on 21 Nov 2014 #permalink

Injected DNA can be incorporated into the genome, eh? Does this mean if you shoot heroin, you turn into a poppy?

By hannah ma (not verified) on 21 Nov 2014 #permalink

Do autistic people not have feelings for others, fall in love, have sex?

Just the so-called high-functioning autistics, and we all know they don't really count as being autistic.

[toggle sarcasm off]

palindrom,

I mean, errant rockets are no joke!

I can't resist quoting Tom Lehrer, "'Once the rockets are up, who cares where they come down? That's not my department,' says Wernher von Braun."

By Krebiozen (not verified) on 21 Nov 2014 #permalink

I mean, errant rockets are no joke!

There's got to be an E. Myles Standish angle in here somewhere, but it's not coming to me.

Why, oh why, did I write "What is there left to say?" at the end of a post on this mess. This story is a mutant onion. You think you have the surface mapped, then the outer layer peels away and it's a whole different ballgame. You try to map that and it peels away again...

It's one thing for Orac to take a story in The Toronto Star as the straight dope. I find no fault with Orac for missing anything I detail below. But I'm supposed to know better, having trained in critical news analysis for my frickin' PhuD, written scholarly works in the field and whatnot. It's my job to unpack this sh!t. I'm the 'media studies professional' here, forcissakes. So... back to work...

Anyway, here's what I've got for today. In days ahead, who the hell knows what will turn up...

Checking on the details of Makayla Sault's withdrawal from chemo, I discovered yet another massive fail on the part of McMaster hospital. I'd seen some vague tangential references to this in other coverage, but not being Canadian, didn't understand them.

For both Makayla and J.J., the hospital chose to file reports with Brant FACS. FACS can only decide whether or not to place a child in protective custody. If the hospital knew anything about Brant FACS (and they have no excuse not to) they would have known the chances that agency would intervene in the case were basically bupkis. But they had another option.

They could have referred the cases to the Ontario Consent and Capacity Board (CCB), which has the authority to mandate a treatment plan. The CCB must issue a decision within 8 days of a filing, thus the Saults would have been obliged to return Makayla to chemo without a significant break in treatment, and she would have remained in her parents custody.

When the National Post inquired why McMaster did not refer Makayla's case to the CCB, a hospital spokesperson replied, in essence, that they believed the Saults would not comply with the CCB, and only a child protection order would force Makayla into treatment.

Which, if true, is evidence of gross incompetence. For them to rely on Brant FACS taking custody of Makayla to insure the resumption of her chemo would mean they are completely ignorant of the de facto nature and limited power of the Brant FACS, ignorant of the history of government custody of First Nations children, ignorant of the firestorm a custody order would set off not only in the New Credit and Six Nations bands, but among First Nations leaders and activists across Canada. And if McMaster believed a protection order was necessary to save Makayla's life, why didn't they file a court petition on her behalf as they later did for J.J.? It makes no sense.

Even more face-palm-worthy is the fact that with the results of the Sault 'investigation' known to them, they took the same route again with J.J. WTF? Did they think the FACS agency had magically transformed in the interim? When they filed notice with FACS for Makayla, the parents may have told the hospital and the FACS that they were resorting to 'traditional medicine,' which the authorities probably had no reason to doubt. They may well not have known that Clement would enter the picture. But by the time McMaster filed the court petition in an attempt to force FACS into action, if they didn't know Makayla had been off to Florida for a whole regime of woo totally unknown to pre-contact aboriginals, and couldn't guess J.J. was headed in the same direction (if she wasn't already gone), that's simply inexcusable.

I don't know what mechanisms Canadian law provides to enforce a CCB mandated treatment plan. I assume the Saults could not simply refuse to comply and that would be the end of it.

It's also far less likely the First Nations community would have backed the parents on refusing treatment plan under a dubious 'traditional medicine' claim alone. Perhaps a CCB mandate wouldn't even provide a basis for an Aboriginal Rights claim. Even if some attorney opined it might, it would have been politically stupid for the activists to put their eggs in that basket. It's the custody issue that got the First Nations leaders and rank-and-file to support the parents, raised the stakes to a serious rights issue. The whole 'traditional medicine' nonsense was never anything but a MacGuffin, a cover for the real issue that served to give cover to all the parties in the case in one way or another

The CCB is the body under Canadian law that adjudicates treatment choices. Period. It is composed of professionals who are well qualified to make such decisions (not M.D.s for obvious COI reasons, but the board members have enough literacy in medicine, ethics and law to do their jobs). It is not the province of the FACS to make judgements on the basis of medical science, as they have no competence to do so.

I can only imagine that the short wait for a CCB mandate would have bolstered an effort to seek protective custody for Makayla or J.J. had the parents refused the treatment plans.

And here's the kicker: what if the CCB had mandated a treatment plan along the lines proposed by Wayne Spear? What if the CCB had mandated McMaster to allow the kids to undergo any 'traditional medicine' treatment the parents desired along with mandated chemo? That would have taken the Aboriginal Rights issue right off the table, As I noted at #22, by Canadian law, a cultural practice can only be considered an Aboriginal Right if it was in place as a defining feature of the specific culture in question prior to its peoples' first contact with Europeans. How do you argue rejection of SBM was a defining feature of a culture before SBM existed?

It was McMaster that forced the court to chose between SBM and 'traditional medicine' as mutually exclusive treatment options. Hardly in the best interests of the kids in these cases. The more I contemplate these events, the more I think McMaster screwed the pooch with the language in the petition that J.J.’s mother “decided on August 27th to discontinue the [chemotherapy] with the plan to treat [J. J.] with traditional medicines.” The problem isn't just that they thus allowed Brian Clement's death-lab quack shop to pass as 'traditional', but that they used the term 'medicine' at all without putting it in quotation marks. It's not medicine! It's a cultural ritual. Religion, if you will. There is no reason to ask people to give it up. The question is whether J.J. gets chemo. Period. The petition should have stated that J.J.’s mother “decided on August 27th to discontinue the [chemotherapy]." Period! But, nooo. Dr. Vicky Breakey MD, Med, FRCPC, Assistant Professor McMaster University, Pediatric Hematologist/Oncologist McMaster Children's Hospital just had to take a shot at the stupid red people's woo — without taking the effort to get the details right at all. Dear Vicky, you can let J.J. have any plant concoction her folks want to feed her. You can let them call it 'medicine', because they are not doctors, nor are they pretending to be, so whatever the f**k they call the plant-sh!t carries no weight at all. You dear Dr. Breakey are the MD-Med-FRCPC-Professor-Hematologist/Oncologist. You cannot call it 'medicine' traditional or otherwise because it is just plant-shit. You do the real medicine which means calling for the chemo and only calling for the chemo. Oh, my Achey Breakey heart.

In the real world as I know it, folks with half-a-brain at least attempt to make personal off-the-record inquiries before going through official channels. So TPTB at McMaster didn't think to call someone like Wayne Spear for advice on dealing with a case involving a First Nations kid? So the McMaster PTB couldn't have sounded out Brant FACS before filing a report?
"Mr. Koster, this is McMaster hospital. Is there a snowball's chance in hell you'll issue a protection order for a First Nations girl dying from leukemia whose parents have pulled her from chemo?"
"Are you out of your f**king mind? F**k no! Take it to the CCB!"

But no. McMaster went right for the custody hammer, and the custody hammer alone. And they did it TWICE, knowing that FACS would do nothing the second time. Now, put yourself in the shoes of a First Nations leader at the point the court petition is filed, the third attempt by McMaster to remove a First Nations child from parental custody. You have the whole history of the residential schools burned into your mind. Is this about woo, or kidnapping? Would you use a thin woo excuse you might not actually believe as a MacGuffin to prevent a kidnapping? if you know J.J.'s family has the ability to book for Florida at the drop of the hat (assuming they hadn't done so already, which they probably had) do you sacrifice an Aboriginal Rights issue on child custody for a court order that isn't going to save J.J.'s life anyway, because she'll be safely ensconced in freakin' West Palm before the decision is read?

(It's important to note that neither the parents nor the bands were parties to the original petition, in which McMaster named only Brant FACS. The parents and bands were added to the case at the behest of Judge Edward, who also appears to have left out a significant passage in the case law in his decision... “Any right, aboriginal or other, by its very nature carries with it the obligation to use it responsibly. It cannot be used, for example, in a way which harms people, aboriginal or non‑aboriginal.” **sigh**)

If McMaster was acting out of mere stupid with Makayla, there was plenty of time for that to wear off before they petitioned the court on behalf of J.J. Given the facts revealed so far, one has to be credulous to see this petition as NOT an attempt to set a precedent for state custody of First Nations children on medical grounds determined by a hospital staff alone without qualified mediating authority. I do not doubt McMaster's sincerity in their desire to save the lives of gravely ill First Nations children. But by all appearances (at this point at least) they channeled that concern through an ongoing war by elements within Euro-Canadian society to exert oppressive control over the First Nations on a wide variety of concerns.

Here I shall digress a bit to examine an example of the kind of hostility the Six Nations band faces from some of its neighbors, which gets reflected to some degree in Canadian society in general, and news coverage in the mainstream press.

In the OP above, Orac cites a post by blogger Deyoyonwatheh (aka DeYo), "who works for McMaster but wasn’t involved in either girl’s care." I'm guessing Orac was alerted to DeYo's post by this comment in the previous thread. As I am not busy saving lives via surgical oncology, I took the time to look at other posts on DeYo's blog and use the Google...

Unlike the not-that-anonymous Orac, DeYo is utterly anonymous. DeYo does not claim to work at McMaster Hospital, but to have received some unspecified sort of medical training at McMaster University. News stories referencing DeYo's blog identify DeYo as being of First Nations descent. Not having scrutinized every page of the blog admittedly, I found only A.) a claim of "kinship connections [including], among others, the people of Haldimand County, the Delaware of Smoothtown, and the Lower Mohawk of the old Mohawk Village and Tyendinaga," and B.) a claim of Mohawk ancestry in some unspecified past post-1650 — noted for the purpose of identifying those distant ancestors as Christians — this in a post titled "Government Funded Domestic Violence Shelter Requires Six Nations Christians to Participate in 'Traditional' Practices or They are Forced Out." (Can I get an Amen!)

Note the careful wording by DeYo. "Kinship connections' don't mean squat. I have blood kin (first cousins) who are African-American, and I'm as white as Ivory soap. And so would I be even if I had a non-white ancestor in the 17th century. DeYo's blog is known on forums devoted to Aboriginal Rights politicking (pro and con), and there is significant suspicion that DeYo is 'passing'. There is no evidence whatsoever that DeYo has ever participated in or identified with a First Nations culture.

While DeYo's post on the leukemia patients seems eminently rational for the most part, a check of the other pages on the blog reveals it is devoted to attacking the Six Nations band on any and every front imaginable. And those attacks display just a wee bit [irony] of wingnut crankery. DeYo breathlessly informs us that the Six Nations are under the spell of "Communists, Anarchists, Palestinian groups, Black Panthers" and various other "rabble rousing extortionists" (e.g. Occupy, the Auto Workers and Public Employees unions, and a few of those dreaded humanities professors — Marxist/Anarchist Fronts All!).

Under the sway of this diabolical conspiracy, the Six Nations are somehow able to wreak "tyranny" on Christians and white Canadians, and have totally "intimidated" the press into silence and the police into inaction.

(We feel for ya DeYo. Here in the US, so-called Land of the Free, two goons named Gorski and Novella have cowed the press into silence about the CDC Whistleblower and the vast Big Pharma/Big Goverment conspiracy to spread autism for profit. And the damn do-nothing cops won't arrest said goons for their fraudulent shill "science" bought-and-paid for by said conspiracy — and our popo even have tanks and bazookas and shit that could get control of Wayne State and Yale hospitals quicker than you can say "Ferguson"! ••Can I get an Amen?•• No?)

The blog informs us that the trigger event for its creation was a traffic jam resulting from a Six Nations anti-fraking protest that impeded DeYo's return home from dinner at a local restaurant. The nerve of those people, I tell ya'!

I'd propose that it would be odd for a bunch of Lefty radicals to support the Sault family's withdrawal of Makayla from chemo on the basis of Evangelical faith-healing Christianity, but, you know, that's just how those insidious Commies roll.

The point is not that some anonymous Bircher is railing against the Six Nations. The point is the supposedly cowed mainstream Canadian press is citing this blog as a legit source on issues without doing any background digging or ID'ing the POV of the source. Confirmation bias, much? Of course, DeYo's partisan wiggitude doesn't mean all the critiques on the blog are invalid, but a proper journalist would find a credible non-anonymous source to confirm and use in any story for publication.
..............

'Blame' as used below is a subjective and contingent philosophical evaluation. It's not a call for any sort of action. It's not an assessment of malice. It's not a judgement of character. People have complicated reasons for doing what they do, or for not acting as we might think they should in the abstract. No one should pass definitive judgement on anyone without knowing a lot more than any of us know about about the details. So, as an abstraction, FWIW:

Revised Makayla and J. J. impending death blame list as of 2PM PCT, 11/21/14, in descending order:

• Brian Clement: Money-grubbing monster killing cancer patients for 34 years
• The State of Florida: There ought to be a law, but it's Florida...
• McMaster Hospital: Ideology-fueled bungling
• Brandt CAWS: Still butt covering cowards
• J.J.'s Parents: Irresponsible woo-dupes, fled jurisdiction
• Makayla's Parents: Irresponsible woo-dupe batsh!t fundies
• Canadian First Nations policies: Uh, oppressed people will oppose the kidnapping of their kids, even if you say "it's in a good cause."
• Racism: Why the bad policies exist
• Lawyers: Lawyers
• SBM advocates: Asleep at the wheel, didn't take the field until the ref had blown the last whistle

Not really culpable:
• Chiefs Hill and LaForme: With J.J. and parents having fled to FL, no option that would save her; pulled into the case by Judge Edward; had to act in best in best interest of the bands, playing the hands they'd been dealt, which in this case meant using the BS 'traditional medicine' MacGuffin to ward off a child-custody precedent clusterf**k created by McMaster's bungling in not going to the CCD.
• Judge Edward: Even had he invoked the "no harm" language in the case law, a ruing in favor of McMaster would not have saved J.J., as she was already in FL.

More importantly, the new blame list as of 2PM PCT, 11/21/14, in descending order, for future First Nations kids who may fall victim to potentially fatal quackery:

• The Quack: Monster still money-grubbing after Makayla is in the ground
• Parents: They shouldn't need to Google the quacks once Makayla dies
• The State of Florida: Hello! Rick! Dying kid in news stories all over the globe! Anybody home? ... [crickets]
• Canadian First Nations policies: The pols needed to help the bands set up their own Child Welfare and Protection Services a long time ago. No excuse not to move after this other than callous disregard for these kids lives
• McMaster Hospital: Ideology-fueled bungling opened the door for quacks to claim future victims. Failure to appeal Edward's ruing inexcusable under the circumstances
• Judge Edward: Used selective reading of case law to established a very bad precedent
• Chiefs Hill and LaForme: Their influence in parents' decisions is limited, but with the custody issue out of the way, they need to do everything they can to push the parents away from woo and into effective treatment for the kids
• Lawyers: Only if an appeal is filed, or another case brought to court

No longer really culpable:
• Brandt CAWS: Everybody should know the de facto limits of their power now
• Racism: The custody issue is (hopefully) settled, and no matter how racist the smack against 'traditional First Nations medicine' may be, that has nothing to do with the survival of First Nations kids because it ain't f**king medicine! The pols are responsible for rising above the bigotry of their constituencies

You'll notice I didn't put 'SBM advocates' in the second list. They could wind up on at or near the end of the blame list if they don't make some small positive contribution to the discussion that has a practical possibility of mattering. Outside parties have little actual say in what happens to these kids, but SBMers should fight like hell for them anyway. But to do that effectively they have to have a smarter ground game than the con-men. Just shouting "Science" does,not.work In the real world sh!t like history, culture, law, economics, ideology, structured inequality and social justice movements are the keys to how things actually happen. and that is never going to change.

In the greatest mythic American con-man narrative, Harold Hill has gotten away with his scam exactly because he does "know the territory" — the vulnerabilities born of hope and desire, the limits of the law, the limits of lay-peoples knowledge, the different kinds of appeals that work with different sorts of folks, the social vacuums ripe for filling with BS, the spots where money resides to be tapped, the traps to avoid...

When an innocent kid's life is at stake, I don't give a hoot in hell what's 'right'. I want to know what's going to work.

Just my two cents, as always... And subject to change at any time...

"I always wonder how much parents with issues of their own work against their children’s independence and developing their own personality"

A lot, it seems. I suppose it depends on the issues. Signs of certain mental health issues seem awfully common in AoA-etc. land. I don't take martyrdom to be 'normal'. I'm not a parent, but speaking anecdotally about friends my age who've raised kids successfully to adulthood now, I'd say they all connected "I want my child to be happy," with "doing everything to make sure they're able to be independent in every way." They all have great relationships with their kids. How did that hippie saying go: "If you love something, let it go, ...and then it will come back"?

I'd guess the TM's would proclaim more loudly than anyone that, "All I want in this life is for my child to be happy." By which they really mean they want their kid to be 'fixed.' But my guess is that even that's projection. What they really want if for themselves to be fixed. The psych literature suggests that personality disorders are largely the result of childhood trauma. True narcissists are horrible people, empty of true empathy, but also know at some that they are broken, and the reason they're broken has something to do with something bad somebody else did to them.

It's easy to imagine such a person wanting a child in the hopes that the child will fix everything, or at least redeem the hidden hurts of the parent by actually being the perfect person the parent pretend to be. It's easy to imagine a parent with narcissistic tendencies hovering over and smothering a child with a physical disability. But autism! What fate could be more 'cruel' to a narcissist than to bear a child who lacks empathic response and has difficulty communicating. The kids don't fix the parents' problems, they amplify them.

So their identity becomes one of suffering. They dote on their kids, perhaps feeling responsible for passing on some acquired characteristic. (Of course, they have to blame the vaccines as a psychological cover to keep their own sense of guilt under the lid.) They shower the kids with affection at the same time they resent them. Has any martyr-mom ever been described as anything but a loving parent by those around her? The TMs dont leave their kids with a sitter and go off to party do, do they? In some twisted way, acting all-about the kid is all about the parent: selfish selflessness.

Of course, that's all an amateur's conjecture. I wonder if anyone has studied the martyr ASD parents. There'd be several good PhD theses in sociology, social psych, maybe even anthropology in there. I wonder if any or how many warrior parents might be 'normal but deluded' or something. Of the ones that have issues, I wonder hat the issues actually are and how deep they go. Are there a number of different kinds of problems behind some of the common bizarre idea and behaviors, or does one sort of condition (e.g. nacissistic tendencies) dominate?

Beyond the initial question of how smothering warrior-parenting correlates with psych 'issues' I wonder how it correlates with other things — various demographic categories, a kid's position on the spectrum — both in general and in terms of different degrees of martyrdom/smothering/'movement' passion...

I suppose the kinds of studies needed t answer such questions would never get past an IRB. Where's Milgram when you need him? : -)

The point, I think is if A.) Parents are indeed harming their children's happiness and well being by keeping them as dependent as possible, and B.) We'd like to see these kids have happier more fulfilling lives, then we need to understand how the parenting psychology works — not just curse the parents for being awful. Narcissists ARE awful, but there's usually nothing anyone can do to change them. Some people aren't fit for parenting at all. Some people aren't fit to parent a special needs child. I don't see that our society is i a position to do anything about that, but more knowledge would be a good thing.

As I've said before here, I think it's really important to separate the warrior parents who have wigged out from the task of caring for an ASD child — the issue of meeting these kids need — and the parents who refuse immunization for their kids out of fear of autism — the issue of lowered collective immunity. I have to imagine that the vax-refusers are mostly 'normal' in the psych department (whatever that means). I also have to imagine 'normal' folks mostly run away screaming from the inner pages of AoA and other vax-conspiracy sites. I think the dropping immunization rates are the result of the crazy seeping out in it's more sane-looking masks, and getting passed on by word of mouth at several removes.

Thus, what would convince the reluctant parents to have the kids get their MMR on schedule would have zero effect on the AoA gang. That is, they're going to do what they do. The trick would be trying to put barriers between them and the general public, blocking the flow of bile, and offering the wary parents an alternative persective that appeals to their best instincts as parents. If you can't make 'em go away, try to drown out the noise. Or something.

Krebiozen @30:

Some folks have harsh words for this man of renown
But some say our attitude should be one of gratitude
Like the widows and cripples in old London town
Who owe their large pensions to Wernher von Braun.

I was once on hand for the launch of a rocket that suffered a first-stage motor anomaly. (That's NASA-speak for, "It blew up.") You don't laugh much about errant rockets after that happens to you.

By Eric Lund (not verified) on 21 Nov 2014 #permalink

There once was a fellow named Crockett
Who had an affair with a rocket
If you saw them out there
You'd be tempted to stare
But if you aint tried it, don't knock it!

-- Thomas Pynchon, Gravity's Rainbow, page 1 million or so

By palindrom (not verified) on 21 Nov 2014 #permalink

Eric Lund,

Like the widows and cripples in old London town [...] You don’t laugh much about errant rockets after that happens to you.

Indeed. My local area in east London was badly hit by various bombs and rockets during WW2. This map gives an idea of just how badly, while this one just shows the V2 rocket hits, which alone killed 9,000 people. There are large swathes of more modern buildings among the Victorian houses hereabouts that betray the bomb damage. A V2 rocket took out a row of houses not a hundred yards from where I write this, and there are a couple of houses nearby with a 'V' for victory built into the repaired brickwork.

I know my USian wife thinks that Brits are obsessed with WW2, and she doubtless has a point, but when its legacy is all around you, it's hard to forget, and I think it's important to remember just how nasty wars can be.

By Krebiozen (not verified) on 21 Nov 2014 #permalink

Forgot to close second link tag, but it works OK.

By Krebiozen (not verified) on 21 Nov 2014 #permalink

but also know at some that they are broken, and the reason they’re broken has something to do with something bad somebody else did to them.

Really?!?! Look, the reason people turn into psychiatric cases is because they have the genetic upbringing to do with it. I had a number of peoples do bad thing to me and I never turned into a narcissist is because I believe that most of the people I get to know are really good peoples. There's also the bad peoples but I'm terribly rough with them because I put one in jail recently.

Ask yourself, why, after a metric ton of harm that people inflected to me, I didn't become a narcissist or a person who live for me, myself and I. Do ask yourself.

It's only now that I get respect from the peoples I encounter on a daily basis.

Alain

Since it's open topic, I thought I'd mention something hilarious over at Timmy Bolen's site.

He's predicting (once again) that Dr. Stephen Barrett will lose the Doctor's Data lawsuit so badly that the bogus lab will recoup tens of millions of dollars in damages from the "cabal of skeptics" and, as part of the settlements, he's claiming that all skeptic blogs including Orac's will be seized by the government and turned over to Doctor's Data. (Never mind the logistics of how ScienceBlogs would accomplish that, but he's deluded...)

I won't do him any favours by linking, but you know where to find it. It's absolutely hysterical (and quite pathetic) how bitter and obsessed this sad little man is with Dr. Barrett, Orac, Peter Bowditch and the "skeptics."

By Woo Fighter (not verified) on 21 Nov 2014 #permalink

Found this tonight---chronic inaction:

Resolution of the Minnesota Board of Medical Practice November 8, 2014
Whereas: On March 10, 2010, the Minnesota Board of Medical Practice resolved to engage in a moratorium for a time period not to exceed five years; or the time at which double-blind, peer reviewed studies resolved issues relating to the presumptive diagnosis 'chronic Lyme disease'..
….Effective November 8, 2014, the Minnesota Board of Medical Practice will voluntarily engage in a moratorium for a time period not to exceed five years,...
At the end of the five year period, in the absence of such scientific studies which bring a conclusion to the issue of the legitimacy of this diagnosis and treatment, the Board will reexamine this issue based on evidence available at the time.

mho: the BoM in Minnesota is in a quandry. In 2010, the Legislature was threatening to pass legislation that would protect "Chronic Lyme" quacks from discipline by the Board.

The Board came up with this as a compromise to avoid legislative action. Looks like they've extended it because the legislative environment still is not favorable to cracking down on these quacks.

Ignorant state legislators can do a LOT of damage to health care because of special interest lobbying. In my home state of North Carolina, the Board of Nursing was pressured into adopting rules to allow unlicensed assistive personnel (CNAs basically) to administer certain medications (basically anything that isn't parenteral). The motive is financial: nurses cost more than CNAs. This will help nursing home operators cut back on nursing staff to administer medications, which are mostly PO except for insulin.

I was shocked. I hadn't heard anything about this. I'm definitely going to get more active in the NCNA as a result.

panacea, thanks! I thought it looked like the board wasn't doing anything, but stalling is a great tactic!
We have more bills coming up this year to for direct-entry midwives and naturopaths
asking for more and more, and this might be a helpful way to forstall action.

^ forestall

@ Woo Fighter: Bolen's place is good for laughs. Recently, he's been trying to muscle his was into the various anti-vaccine autism groups...with the goal, I suppose, of getting his greedy hands on the money of the wealthy benefactors who fund the Congressional critters reelection campaigns. They can all thank Jake Crosby for the divisions within their group.

A bit of disinterested promotion for a French book I just read over this week-end (for Francophones only, sadly - I don't think there is an English version yet):

Ambroise Paré : Un Urgentiste Au XVIe Siècle

It's a biography of a famous French barber-surgeon, a real "brave maverick scientist", who truly revolutionized the field. The book is full of anecdotes of surgical operations and treatments done at this time, including tumor resection, without much in term of anesthesia. There were some tough people.

By Helianthus (not verified) on 23 Nov 2014 #permalink

I received two notes this week that the Amish girl Sarah Hershberger's cancer continues to be resolved and is happy, healthy, baking bread, sewing her own clothes and it top scholar at school. It has been12 months now past the 6 month death date foreseen by Skepticons, the hospital and the oracles of all truth here. Perhaps the good food and food-based products as well as prayer helped after all. The family even thought that the 4 rounds of chemo had helped. Everyone is very thankful. But thanks for your opinions anyway that gave us all comic relief from a hard battle, fought and won. Fortunately Orac was wrong again on this one. http://scienceblogs.com/insolence/2013/12/09/i-fear-that-sarah-hershber…

Evidence, other than your report? Links?

Of course, I've explained on numerous occasions that there is a small possibility that Sarah can survive without additional chemotherapy, thanks to the two courses of chemotherapy she has already had. I also hoped that this would happen. Of course, one year isn't enough time to know if she's out of the woods yet, but I did predict that if Sara were one of the fortunate few to survive without relapse after only two rounds of chemotherapy, the quacks would trumpet this as "proof" that their quackery works, which is what they always do in these cases where the conventional therapy cured the patient before the woo started (e.g. Billy Best).

I have a question that I can't find the answer to by Googling, if there are any people here with a good science understanding maybe you could help me. How does PCP cause rhabdomyolysis (in layman's terms)?

By The Light's Bane (not verified) on 23 Nov 2014 #permalink

But thanks for your opinions anyway that gave us all comic relief from a hard battle, fought and won.

A cancer surgeon's warning that a family was putting a child's life in serious danger is "comic relief"? Does anyone really find gambling with a child's life funny?

By Krebiozen (not verified) on 24 Nov 2014 #permalink

Light's Bane @50 -- I have no idea, but for the benefit of other readers I might point out that PCP is a recreational drug that was said to have been developed as an animal tranquilizer -- it's apparently Really Bad Stuff.

It's not "Primary Care Physician", which one hopes is more benign, though I'm sure there are cranks out there who'd dispute that.

By palindrom (not verified) on 24 Nov 2014 #permalink

The Light's Bane,

How does PCP cause rhabdomyolysis (in layman’s terms)?

Interference with muscle metabolism, hyperpyrexia and seizures are all associated with PCP and can all cause rhabdomyloysis, which is essentially the breakdown of muscle tissue. This results in large amounts of myoglobin being released into the blood, sometimes leading to renal damage, since the kidneys can't cope with myoglobin.

The brown urine seen in rhabdomyolysis is characteristic - I used to test urine for myoglobin and have seen a few cases, mostly from crush injuries, and once in a woman with toxic shock syndrome, if I recall correctly.

By Krebiozen (not verified) on 24 Nov 2014 #permalink

Oops, I meant "rhabdomyolysis" not "rhabdomyloysis" .

By Krebiozen (not verified) on 24 Nov 2014 #permalink

I never really ran into doctors with "woo" beliefs until I moved to the West Coast. How cliche. Several docs in my small rural town use acupuncture and Therapeutic Touch. I don't think any have stooped to using homeopathy.

By NewCoasterMD (not verified) on 24 Nov 2014 #permalink

David
Ohio

Is that you, Augie? If so, speaking of comic relief, I think everyone would like an accounting of the funds you skimmed from "Sarah's Health Freedom Fund."

"Skimmed" implies that some was left for the nominal recipient.

By herr doktor bimler (not verified) on 24 Nov 2014 #permalink

I might point out that PCP is a recreational drug that was said to have been developed as an animal tranquilizer — it’s apparently Really Bad Stuff.

There's a fun-looking, but not particularly toxicology oriented, review of the dissociatives here (PDF). PMID 15021204 is also readily obtained, PMID 10802423 not so much.

But I digress. Watch out for buffalo fish.

Street version of PCP in the late 70s/early 80s cut with some unknown horror would cause psychosis like you would not believe. I was once in an ER situation where five burly guys were required to restrain someone who had overdosed on it and everyone involved still got injured. Patient survived with serious problems.

Entirely unrelated question related to the very entertaining Oz post and thread: How has this guy hung onto his legitimate appointment to perform real surgery on real people?

Thanks Krebiozen! So is PCP neurotoxic and can it case bladder trouble if someone uses it often like ketamine can?

By The Light's Bane (not verified) on 26 Nov 2014 #permalink

Thank you for the journal Narad. I really like it because I can understand it. I have dyscalculia and it effects my understanding of some aspects of science. But even I understand anti-vax, homeopathy, anti-chemo, toxins gambit and other woo is baloney. Is there any science people with dyscalculia could do? Maybe psychology? What are some science based harm reduction measures for when SWIM (Someone Who Isn't Me) uses dissociative recreational drugs?

By The Light's Bane (not verified) on 26 Nov 2014 #permalink

The Light's Bane,

Thanks Krebiozen! So is PCP neurotoxic and can it case bladder trouble if someone uses it often like ketamine can?

Simple answer, I don't know. My knowledge of 'drugs of abuse' is a bit stale, though I gave a few talks on the subject some years ago. PCP isn't seen in the UK (where I reside) much, though ketamine seems popular.

I don't know if PCP itself is neurotoxic or if it is whatever it is cut with that causes the problems, as Sara suggested. I also don't know of any reason for bladder problems with PCP and I wasn't aware that ketamine could cause such problems either until you mentioned it. The article Narad linked to says that ketamine is cytotoxic and that long-term use causes bladder and liver damage.

I would suggest persuading SWIY to stop using dissociatives altogether if at all possible, as I don't know of any way of using these drugs safely in a non-medical setting, unless you happen to have a team of babysitters. People's bodies tend to wander around doing stuff they are consciously unaware of on dissociatives, presumably acting out some sort of dreams/nightmares, which doesn't strike me as a good thing. I think the violent behavior Sara describes is unusual, but it's a risk probably not worth taking.

I remember one of the Fabulous Furry Freak Brothers comic books in which they are given some ketamine and only then ask what it does, to which the reply is, as the drug starts taking effect, "it gives you a 48 hour nightmare", which is not so far from the truth. John Lilly spent days at a time in a parallel reality on ketamine, while his physical body was up a tree IIRC. I believe it was at this time he decided to get breast implants (one of his associates told me this, though I can't corroborate it), which doesn't seem to me like a good decision for a straight non-TG male.

By Krebiozen (not verified) on 27 Nov 2014 #permalink

An oldie but goodie from io9

Many ideas have left the world of science and made their way into everyday language — and unfortunately, they are almost always used incorrectly. We asked a group of scientists to tell us which scientific terms they believe are the most widely misunderstood. Here are ten of them.

Enjoy.