Inflammatory
November 23, 2009 2:42 PM Subscribe
"We were concerned that the study would raise a lot of controversy and be misused," Pardo said. "We were right." Some practitioners treat autistic children with the anti-inflammatory intravenous immunoglobulin, citing a study by Carlos Pardo, et al. showing inflammation in the brains of deceased autistic patients. Pardo: "modulators of immune reactions (e.g. intravenous immunoglobulins, IVIG) WOULD NOT HAVE a significant effect." Others, following the work of Simon Baron-Cohen on autism and the male brain, treat autistic children with testosterone inhibitors, a prospect which Baron-Cohen says "fills me with horror." Another anti-inflammatory treatment, hyperbaric therapy, is supported by one recent clinical trial, but looks bad in another. Side effects include horrible death by fire.
(via the Chicago Tribune)
Oh god. I'd be surprised if this ended well. I have a cousin who is autistic, and his parent's car sports the following label: "Autism: It's not a mystery, it's Mercury!"
posted by anotherpanacea at 3:00 PM on November 23, 2009
posted by anotherpanacea at 3:00 PM on November 23, 2009
Glad that guy keeps busy in his spare time when he's not being Borat or Bruno.
posted by scrowdid at 3:03 PM on November 23, 2009 [5 favorites]
posted by scrowdid at 3:03 PM on November 23, 2009 [5 favorites]
That last link is pretty damn disingenuous.
posted by mikoroshi at 3:07 PM on November 23, 2009 [1 favorite]
posted by mikoroshi at 3:07 PM on November 23, 2009 [1 favorite]
Few things anger me more than people who abuse science and take advantage of desperate parents.
posted by lexicakes at 3:19 PM on November 23, 2009
posted by lexicakes at 3:19 PM on November 23, 2009
his parent's car sports the following label: "Autism: It's not a mystery, it's Mercury!"
His parents must be going on faith because there is zero evidence to back that up.
posted by cjets at 3:21 PM on November 23, 2009 [4 favorites]
His parents must be going on faith because there is zero evidence to back that up.
posted by cjets at 3:21 PM on November 23, 2009 [4 favorites]
escabeche: "Side effects include horrible death by fire. (via the Chicago Tribune) "
PLEASE READ THE ARTICLES YOU GOOGLE BEFORE MAKING A POST OUT OF THEM:
posted by boo_radley at 3:38 PM on November 23, 2009 [2 favorites]
PLEASE READ THE ARTICLES YOU GOOGLE BEFORE MAKING A POST OUT OF THEM:
Pesce had been keeping her grandson company inside the pressurized oxygen chamber, where he was getting therapy for cerebral palsy.
posted by boo_radley at 3:38 PM on November 23, 2009 [2 favorites]
boo_radley, the link is actually a reference to the side effects of one of the treatments (see previous links). No need to be so harsh.
posted by stinker at 3:46 PM on November 23, 2009
posted by stinker at 3:46 PM on November 23, 2009
CONFLICTING STUDIES ARE WHY GOD GAVE US REVIEW ARTICLES.
posted by The White Hat at 3:47 PM on November 23, 2009 [1 favorite]
posted by The White Hat at 3:47 PM on November 23, 2009 [1 favorite]
Glad that guy keeps busy in his spare time when he's not being Borat or Bruno.
Simon Baron-Cohen is actually Sacha's cousin.
posted by Faint of Butt at 3:54 PM on November 23, 2009 [6 favorites]
Simon Baron-Cohen is actually Sacha's cousin.
posted by Faint of Butt at 3:54 PM on November 23, 2009 [6 favorites]
His parents must be going on faith because there is zero evidence to back that up.
In fact, there's considerable evidence to the contrary.
Maybe it's an old bumper sticker. Once the mercury deal was widely discredited, they moved on to saying it must be the fact that that several vaccines are given at once, overloading the child's still-developing autoimmune system. There is also no evidence for that, and any immunologist will tell you that a child on a daily basis deals with shocks to their immune system that make the vaccines look insignificant. But it hasn't been as widely discredited as the mercury thing, so it still has some currency among people who know nothing about science.
They also claim they're not anti-vaccine. Apparently, it's just a coincidence that their unsupported moral panic has twice landed on vaccines as the culprit. At best its a wasted effort; at worst it is siphoning funding, attention, and activism away from tracking down the actual cause of autism. No, scratch that. At worst, it's killing children.
posted by Astro Zombie at 3:57 PM on November 23, 2009 [6 favorites]
In fact, there's considerable evidence to the contrary.
Maybe it's an old bumper sticker. Once the mercury deal was widely discredited, they moved on to saying it must be the fact that that several vaccines are given at once, overloading the child's still-developing autoimmune system. There is also no evidence for that, and any immunologist will tell you that a child on a daily basis deals with shocks to their immune system that make the vaccines look insignificant. But it hasn't been as widely discredited as the mercury thing, so it still has some currency among people who know nothing about science.
They also claim they're not anti-vaccine. Apparently, it's just a coincidence that their unsupported moral panic has twice landed on vaccines as the culprit. At best its a wasted effort; at worst it is siphoning funding, attention, and activism away from tracking down the actual cause of autism. No, scratch that. At worst, it's killing children.
posted by Astro Zombie at 3:57 PM on November 23, 2009 [6 favorites]
Yes, cjets, I think that was anotherpanacea's point. Not just faith - BAD faith, and pseudoscience and, as lexicakes said, the abuse of science and its practitioners. Amy Wallace's recent profile of Paul Offitt in Wired, and the aftermath for her as documented in her Twitter feed, is a jarring, sobering example of all this, covered in this previous post.
posted by yiftach at 3:57 PM on November 23, 2009 [1 favorite]
posted by yiftach at 3:57 PM on November 23, 2009 [1 favorite]
Few things anger me more than people who abuse science and take advantage of desperate parents.
Well, if you're in the mood to be angry I can introduce you to a cash upfront DAN! doctor whose first order of business is to have you get your child tested for heavy metal poisoning and then put them on a GF/CF diet.
Jenny McCarthy sums up the DAN! angle pretty concisely; "We believe what helped Evan recover was starting a gluten-free, casein-free diet, vitamin supplementation, detox of metals, and anti-fungals for yeast overgrowth that plagued his intestines". I love the intestine thing. She of course gives some credit to more traditional therapies; "Once Evan's neurological function was recovered through these medical treatments, speech therapy and applied behavior analysis helped him quickly learn the skills he could not learn while he was frozen in autism."
We're sticking with the ABA,PT,OT and ST. Remember folks - some of the heavy metal detox methods can be fatal to your child.
posted by MikeMc at 4:13 PM on November 23, 2009
Well, if you're in the mood to be angry I can introduce you to a cash upfront DAN! doctor whose first order of business is to have you get your child tested for heavy metal poisoning and then put them on a GF/CF diet.
Jenny McCarthy sums up the DAN! angle pretty concisely; "We believe what helped Evan recover was starting a gluten-free, casein-free diet, vitamin supplementation, detox of metals, and anti-fungals for yeast overgrowth that plagued his intestines". I love the intestine thing. She of course gives some credit to more traditional therapies; "Once Evan's neurological function was recovered through these medical treatments, speech therapy and applied behavior analysis helped him quickly learn the skills he could not learn while he was frozen in autism."
We're sticking with the ABA,PT,OT and ST. Remember folks - some of the heavy metal detox methods can be fatal to your child.
posted by MikeMc at 4:13 PM on November 23, 2009
Simon Baron-Cohen is actually Sacha's cousin.
This guy's entire semi-immediate family tree is fascinating.
posted by june made him a gemini at 4:37 PM on November 23, 2009 [2 favorites]
This guy's entire semi-immediate family tree is fascinating.
posted by june made him a gemini at 4:37 PM on November 23, 2009 [2 favorites]
We're sticking with the ABA,PT,OT and ST
This.
We use all of the above (My son actually started out with floor time before graduating to ABA). Advanced Behavioral Analysis, Physical Therapy, Occupational Therapy and Speech Therapy are the best ways to treat a child with Autism.
They all involve a lot of time, hard work and patience. But with perspective of years, you can see where the progress is made.
posted by cjets at 4:41 PM on November 23, 2009 [1 favorite]
This.
We use all of the above (My son actually started out with floor time before graduating to ABA). Advanced Behavioral Analysis, Physical Therapy, Occupational Therapy and Speech Therapy are the best ways to treat a child with Autism.
They all involve a lot of time, hard work and patience. But with perspective of years, you can see where the progress is made.
posted by cjets at 4:41 PM on November 23, 2009 [1 favorite]
PLEASE READ THE ARTICLES YOU GOOGLE BEFORE MAKING A POST OUT OF THEM:
How does the article conflict with what he said? A kid was being treated in a hyperbaric chamber, and he died due to a fire that occurred. He was being treated for cerebral palsy rather then autism, though.
After reading this article it makes me wonder if testosterone inhibitors wouldn't have been a good idea.
posted by delmoi at 5:02 PM on November 23, 2009
How does the article conflict with what he said? A kid was being treated in a hyperbaric chamber, and he died due to a fire that occurred. He was being treated for cerebral palsy rather then autism, though.
After reading this article it makes me wonder if testosterone inhibitors wouldn't have been a good idea.
posted by delmoi at 5:02 PM on November 23, 2009
It's sad. My little sister is autistic, and for a while, my mom really dearly hoped that it was vaccine-based mercury poisoning, and was actually considering chelation therapy. She never did it, though, which was for the best, especially with all the new studies coming out, and the fact that it seems like few autistic kids other than Jenny McCarthy's son got better by that method.
Today, on public radio, there was a call in show with a guy who wrote a book on "denialism," which included a section on the anti-vaccine movement. One of the callers was an angry parent who said he knew about all the papers and studies that showed that there was no correlation between vaccines and autism, but that he felt it would be impossible for one of those scientists to say such a thing to his face, as a father of a son who developed autistic tendencies the day after his shot. The author calmly explained that while it was awful that his son had developed a developmental disorder, if there were a correlation like that on a statistically significant level, it would show up in the papers. The caller angrily then said that he knew firsthand that vaccines caused autism, because he saw it with his own eyes, and that the author would know the truth if he saw it for himself. The poor man heard why he was wrong, and stuck to his guns.
It really goes to show that scientific thinking is not something innate to our species, and that we're apt to lose it when something awful happens. I truly do feel bad for the caller, but he's just plain wrong. Vaccination starts at 18 months, and autism typically first manifests around the same time. Scientists directly seek to test claims, and there is a big incentive for writing a paper showing a strong link between vaccines and autism. The media would love that.
posted by mccarty.tim at 5:04 PM on November 23, 2009 [5 favorites]
Today, on public radio, there was a call in show with a guy who wrote a book on "denialism," which included a section on the anti-vaccine movement. One of the callers was an angry parent who said he knew about all the papers and studies that showed that there was no correlation between vaccines and autism, but that he felt it would be impossible for one of those scientists to say such a thing to his face, as a father of a son who developed autistic tendencies the day after his shot. The author calmly explained that while it was awful that his son had developed a developmental disorder, if there were a correlation like that on a statistically significant level, it would show up in the papers. The caller angrily then said that he knew firsthand that vaccines caused autism, because he saw it with his own eyes, and that the author would know the truth if he saw it for himself. The poor man heard why he was wrong, and stuck to his guns.
It really goes to show that scientific thinking is not something innate to our species, and that we're apt to lose it when something awful happens. I truly do feel bad for the caller, but he's just plain wrong. Vaccination starts at 18 months, and autism typically first manifests around the same time. Scientists directly seek to test claims, and there is a big incentive for writing a paper showing a strong link between vaccines and autism. The media would love that.
posted by mccarty.tim at 5:04 PM on November 23, 2009 [5 favorites]
It seems to me like there's a lot of 'practitioners' out there who see autistic patients as little guinea pigs, ready to be treated with whatever weird treatment seems passingly plausible. I'm always surprised at the variety of crap being given to autistic children. Surely other children aren't experimented on in this way? Sadly the parents involved don't seem to understand that you need some kind of scientific mechanism to have an effect, just testing random stuff in the hopes that it might do something is unethical.
The anti-inflammatory treatments here are a good example. Even if the type of inflammation found really is a cause of autism the treatments applied have no way of reducing that particular inflammation. There's no mechanism, it's the wrong treatment. But it gets done anyway because it sounds plausible when described at a vague, undetailed level and the people pushing it are good at looking legitimate. It must be so hard to try and unravel the real science when so much almost-but-not-quite-true stuff is thrown around.
posted by shelleycat at 5:05 PM on November 23, 2009 [1 favorite]
The anti-inflammatory treatments here are a good example. Even if the type of inflammation found really is a cause of autism the treatments applied have no way of reducing that particular inflammation. There's no mechanism, it's the wrong treatment. But it gets done anyway because it sounds plausible when described at a vague, undetailed level and the people pushing it are good at looking legitimate. It must be so hard to try and unravel the real science when so much almost-but-not-quite-true stuff is thrown around.
posted by shelleycat at 5:05 PM on November 23, 2009 [1 favorite]
"Autism: It's not a mystery, it's Mercury!"
The planet?
The Ford auto marque?
The late lead singer of Queen?
I mean, we know it isn't the element.
posted by Sidhedevil at 5:06 PM on November 23, 2009 [9 favorites]
The planet?
The Ford auto marque?
The late lead singer of Queen?
I mean, we know it isn't the element.
posted by Sidhedevil at 5:06 PM on November 23, 2009 [9 favorites]
few autistic kids other than Jenny McCarthy's son got better by that method
We don't even know if Jenny McCarthy's son's reported improvement was caused by chelation therapy; we just know that he is reported to have improved, and that he is reported to have had chelation therapy.
posted by Sidhedevil at 5:07 PM on November 23, 2009 [3 favorites]
We don't even know if Jenny McCarthy's son's reported improvement was caused by chelation therapy; we just know that he is reported to have improved, and that he is reported to have had chelation therapy.
posted by Sidhedevil at 5:07 PM on November 23, 2009 [3 favorites]
Has there been any word on this study, which found a possible link between the locus coeruleus and autism, behind the fact that autistic children tend to function better when they have a fever?
There's a radio interview here (scroll down to "Fever and Autism"), a press release here, and a lecture here.
It sounds really compelling, especially for the fact that it claims epigenetic therapy could serve as treatment to reverse autism. My mom and her friends with autistic children all claim they had made more progress when their kids had fevers. I know the plural of anecdote is not data, but the paper does confirm the trend.
posted by mccarty.tim at 5:13 PM on November 23, 2009
There's a radio interview here (scroll down to "Fever and Autism"), a press release here, and a lecture here.
It sounds really compelling, especially for the fact that it claims epigenetic therapy could serve as treatment to reverse autism. My mom and her friends with autistic children all claim they had made more progress when their kids had fevers. I know the plural of anecdote is not data, but the paper does confirm the trend.
posted by mccarty.tim at 5:13 PM on November 23, 2009
"Autism: It's not a mystery, it's Mercury!"
The late lead singer of Queen?
That does explain some aspects of this.
Please don't hate on me.
posted by hippybear at 5:17 PM on November 23, 2009
The late lead singer of Queen?
That does explain some aspects of this.
Please don't hate on me.
posted by hippybear at 5:17 PM on November 23, 2009
>
I meant that half-sarcastically. A good number of kids (not the majority, of course) who show autistic tendencies grow out of them, especially if they get help through conventional therapy. I think that, if anything, the chelation therapy did more harm than good.
Jenny McCarthy took her son to both regular therapy and the unproven chelation therapy, and he got better. That's still an inconclusive annecdote no matter how you slice it. It's not enough evidence to write a paper, and it certainly shouldn't be enough evidence to get on Oprah and scare parents across the nation into risking their children's lives.
posted by mccarty.tim at 5:17 PM on November 23, 2009
I meant that half-sarcastically. A good number of kids (not the majority, of course) who show autistic tendencies grow out of them, especially if they get help through conventional therapy. I think that, if anything, the chelation therapy did more harm than good.
Jenny McCarthy took her son to both regular therapy and the unproven chelation therapy, and he got better. That's still an inconclusive annecdote no matter how you slice it. It's not enough evidence to write a paper, and it certainly shouldn't be enough evidence to get on Oprah and scare parents across the nation into risking their children's lives.
posted by mccarty.tim at 5:17 PM on November 23, 2009
After a recent and somewhat embarrassing incident involving my misunderstanding of the Hygiene Hypothesis I'm just going to throw my hands up and surrender on this one. All I can say is I know a Neurologist who is highly respected who says that Thimerosal is not necessary very safe for some groups of kids. I'll trust this opinion over the immunologists.
posted by Pseudology at 6:13 PM on November 23, 2009
posted by Pseudology at 6:13 PM on November 23, 2009
Pseudology: "All I can say is I know a Neurologist who is highly respected who says that Thimerosal is not necessary very safe for some groups of kids. I'll trust this opinion over the immunologists."
So you're saying that you trust one neurologist's opinion because a) he's highly respected, and b) because you know him personally. And you don't just trust his opinion over "the immunologists" you trust it over the consensus of the entire scientific community.
Did you learn the scientific method from Jenny McCarthy?
posted by inoculatedcities at 6:20 PM on November 23, 2009 [3 favorites]
So you're saying that you trust one neurologist's opinion because a) he's highly respected, and b) because you know him personally. And you don't just trust his opinion over "the immunologists" you trust it over the consensus of the entire scientific community.
Did you learn the scientific method from Jenny McCarthy?
posted by inoculatedcities at 6:20 PM on November 23, 2009 [3 favorites]
By the way, I was very pleased to see this article, especially in light of so much of this recently.
Whenever anybody I know starts up with this crap, I point them to this handy summary of the evidence, from Science-Based Medicine.
posted by inoculatedcities at 6:27 PM on November 23, 2009
Whenever anybody I know starts up with this crap, I point them to this handy summary of the evidence, from Science-Based Medicine.
posted by inoculatedcities at 6:27 PM on November 23, 2009
"So you're saying that you trust one neurologist's opinion because a) he's highly respected, and b) because you know him personally. And you don't just trust his opinion over "the immunologists" you trust it over the consensus of the entire scientific community."
I'm not sure if consensus is the right word though. Scientists disagree all the time about tons of stuff. So rather than have the arrogance to assume I'll have a perfect understanding of what's going on I find someone who I know has a better understanding of autism than your average immunologist who specializes in making vaccines and only glossed over the disorder in med school and I trust his opinion rather than waste 20 hours reading this stuff and getting half of it wrong.
So a) yes and b) yes. I know it's not the scientific method but then again, as a non-scientist I can afford the luxury of just deferring the decision to someone else who knows more than me.
posted by Pseudology at 6:45 PM on November 23, 2009
I'm not sure if consensus is the right word though. Scientists disagree all the time about tons of stuff. So rather than have the arrogance to assume I'll have a perfect understanding of what's going on I find someone who I know has a better understanding of autism than your average immunologist who specializes in making vaccines and only glossed over the disorder in med school and I trust his opinion rather than waste 20 hours reading this stuff and getting half of it wrong.
So a) yes and b) yes. I know it's not the scientific method but then again, as a non-scientist I can afford the luxury of just deferring the decision to someone else who knows more than me.
posted by Pseudology at 6:45 PM on November 23, 2009
Pseudology - When the overwhelming majority of researchers and all of the major health organizations in the world deny a link between microgram dosages of ethylmercury in the preservatives of vaccines and autism, that's called consensus.
Pointing to a chorus of pseudoscientific quacks hawking dangerous miracle cures and the opinion of the one neurologist you know, then admitting that you aren't familiar at all with the issue does not a scientific controversy make.
A manufactured controversy, sure. But not a scientific one.
posted by inoculatedcities at 6:56 PM on November 23, 2009
Pointing to a chorus of pseudoscientific quacks hawking dangerous miracle cures and the opinion of the one neurologist you know, then admitting that you aren't familiar at all with the issue does not a scientific controversy make.
A manufactured controversy, sure. But not a scientific one.
posted by inoculatedcities at 6:56 PM on November 23, 2009
I feel so bad for these parents, and while I don't believe the mercury theory, there was a reason that it gained such currency. There is a history in American medicine (Tuskegee experiments, involuntary sterilizations) of giving bad treatment or advice to patients, as well as quite a lot of corporate indifference to pollution that ends up in our water and food. Combine that with the less-than-stellar reactions of the medical community/vaccine makers to the questions that came from parents when the mercury theory first began to circulate, and you have a lot of understandable fear and confusion. Autism is terrifying, invisible, mysterious, and heartbreaking; what makes it worse is that it takes away a child who seems normal and replaces them with one who has maddening, intractable, problems that, if they're severe enough, wipe out hope for an independent productive life.
The story of thimerosol-as-culprit was therefore extremely convincing, even if it was wrong; I really really dislike the scorn poured on the parents who believed it before any conflicting studies came out. It really doesn't make sense to a layperson that something as dangerous as mercury could be a safe agent in a vaccine. It really did seem that the epidemic of autism had a likely connection to the use of thimerosol, and that the vaccine makers and medical complex were just completely blase about the increasing number of vaccines children were required to have and dismissive of parental concerns about the impact of those on a child's immune system.
Parents are given constant warnings about not feeding their child solids too soon, or cow's milk, or sugar, peanut butter, fish, or cheeses, or lunchmeats; monitoring what goes into your child's body, even though it seems harmless to you, is something we tell parents to do, all the time. We cannot expect them to just turn off that mode of thinking and blindly accept what all of us smart people tell them is right before we have evidence in hand.
We have the evidence now, but would we without the huge groundswell of fear and outrage that triggered it?
It is the job of parents to protect their children, and the bigger the threat, the more reassurances they are going to want that something is safe. It should also be the job of medicine and the government to be prepared to defend treatments for children and to not dismiss parents with concerns as crazy hippie know-nothings.
/rant
Having said all that, snake oil salespersons (and their willing idiots like McCarthy) who prey on parents of disabled kids should go to hell.
posted by emjaybee at 7:11 PM on November 23, 2009 [4 favorites]
The story of thimerosol-as-culprit was therefore extremely convincing, even if it was wrong; I really really dislike the scorn poured on the parents who believed it before any conflicting studies came out. It really doesn't make sense to a layperson that something as dangerous as mercury could be a safe agent in a vaccine. It really did seem that the epidemic of autism had a likely connection to the use of thimerosol, and that the vaccine makers and medical complex were just completely blase about the increasing number of vaccines children were required to have and dismissive of parental concerns about the impact of those on a child's immune system.
Parents are given constant warnings about not feeding their child solids too soon, or cow's milk, or sugar, peanut butter, fish, or cheeses, or lunchmeats; monitoring what goes into your child's body, even though it seems harmless to you, is something we tell parents to do, all the time. We cannot expect them to just turn off that mode of thinking and blindly accept what all of us smart people tell them is right before we have evidence in hand.
We have the evidence now, but would we without the huge groundswell of fear and outrage that triggered it?
It is the job of parents to protect their children, and the bigger the threat, the more reassurances they are going to want that something is safe. It should also be the job of medicine and the government to be prepared to defend treatments for children and to not dismiss parents with concerns as crazy hippie know-nothings.
/rant
Having said all that, snake oil salespersons (and their willing idiots like McCarthy) who prey on parents of disabled kids should go to hell.
posted by emjaybee at 7:11 PM on November 23, 2009 [4 favorites]
emjaybee: While I agree with your comment in general, I have to say that it is incredibly irresponsible to cause a panic based on very little evidence. The whole Thimerosal scare started with one study, which has since been proven wrong at best, and fraudulent at worst. I can understand why parents were freaked out by this before there were further studies done. And as a parent, I understand how difficult it can be to resist the urge to freak out about something like this.
However, there was no reason to take one preliminary study and a handful of anecdotes and use it as a basis to resist vaccinations. The anti-vaccine crusaders who stirred up this panic are guilty of endangering the lives of thousands of children. And the "biomed" charlatans are just as guilty of endangering the welfare of the children they claim to be treating.
I don't demonize the parents for doing what they think is best for their children. They are victims, just as their children are. What I have trouble understanding, though, is how people can continue to believe quackery in the face of evidence.
Having said all that, I do think that many people in the scientific and medical communities are failing to express the proper amount of compassion for parents. We need to find a way to educate people without sounding arrogant and condescending. There is a certain percentage of the population who just distrust doctors and "Big Pharma," but I think there's also a significant percentage who are just desperate parents looking for ANYTHING to help their children.
posted by lexicakes at 7:34 PM on November 23, 2009 [2 favorites]
However, there was no reason to take one preliminary study and a handful of anecdotes and use it as a basis to resist vaccinations. The anti-vaccine crusaders who stirred up this panic are guilty of endangering the lives of thousands of children. And the "biomed" charlatans are just as guilty of endangering the welfare of the children they claim to be treating.
I don't demonize the parents for doing what they think is best for their children. They are victims, just as their children are. What I have trouble understanding, though, is how people can continue to believe quackery in the face of evidence.
Having said all that, I do think that many people in the scientific and medical communities are failing to express the proper amount of compassion for parents. We need to find a way to educate people without sounding arrogant and condescending. There is a certain percentage of the population who just distrust doctors and "Big Pharma," but I think there's also a significant percentage who are just desperate parents looking for ANYTHING to help their children.
posted by lexicakes at 7:34 PM on November 23, 2009 [2 favorites]
Agreed, Emjaybee. I don't hold the parents who blame vaccines in contempt. I feel bad for them, and understand why they feel that way. For a while, I thought it was true, too. My mom was very passionate about it, and I was a freshman in high school. It was about 7 years ago now, so the science wasn't as developed, either.
I do get upset when people rally against medicine and pitch out-there alternative treatments. I don't think the majority of autism "cures" are intentional snake-oil. The people who come up with them are usually well-meaning quacks who come up with simple, but wrong, hypothesis. It's not that they're deliberately doing bad, but the fact that they are doing tangible harm (at least fiscally, at worst mortal harm to the child) is what seriously bothers me.
I think the best way to go about this is rationally. After all, no parent wants to be the parent to do the "good" thing by not vaccinating, and then end up giving their kid meningitis.
posted by mccarty.tim at 7:42 PM on November 23, 2009
I do get upset when people rally against medicine and pitch out-there alternative treatments. I don't think the majority of autism "cures" are intentional snake-oil. The people who come up with them are usually well-meaning quacks who come up with simple, but wrong, hypothesis. It's not that they're deliberately doing bad, but the fact that they are doing tangible harm (at least fiscally, at worst mortal harm to the child) is what seriously bothers me.
I think the best way to go about this is rationally. After all, no parent wants to be the parent to do the "good" thing by not vaccinating, and then end up giving their kid meningitis.
posted by mccarty.tim at 7:42 PM on November 23, 2009
His parents must be going on faith because there is zero evidence to back that up.
Yeah, I'm sorry that wasn't clear. I'm just thinking about seeing them again, with the holidays coming up, and whether I'll be able to hold my tongue. It's this weird kind of claim to expertise/authority, that goes something like this: my child is autistic so I can see what the cause of autism is, while those scientists are so biased with their evidence that they are blind to the truth.
Anyway, I'm not safe at Thanksgiving if I've read any recent studies on this idiocy, so when I indicated that a controversy was brewing, I didn't mean here.
posted by anotherpanacea at 7:52 PM on November 23, 2009
Yeah, I'm sorry that wasn't clear. I'm just thinking about seeing them again, with the holidays coming up, and whether I'll be able to hold my tongue. It's this weird kind of claim to expertise/authority, that goes something like this: my child is autistic so I can see what the cause of autism is, while those scientists are so biased with their evidence that they are blind to the truth.
Anyway, I'm not safe at Thanksgiving if I've read any recent studies on this idiocy, so when I indicated that a controversy was brewing, I didn't mean here.
posted by anotherpanacea at 7:52 PM on November 23, 2009
The story of thimerosol-as-culprit was therefore extremely convincing, even if it was wrong; I really really dislike the scorn poured on the parents who believed it before any conflicting studies came out.
it wasn't convincing to me and this story came out at the same time i discovered MY child was autistic
i'd like to rant a little too - it just plain pisses me off that when i go to barnes and noble, there's one magazine that's specifically about autism and it's full of fucking claptrap and nonsense about mercury and quack miracle diet cures
god forbid that the community of autistic people and their parents be served by a magazine that actually tries to deal with the subject rationally and fairly
they're not making my task dealing with this any easier with all the bullshit they're spouting - they do NOT SPEAK FOR ALL OF US and i wish they'd stop it
i do not know what the cause of autism is - they do not know what the cause of autism is - what i do know is that sometimes in life you have to accept what you've been given to deal with and learn how to cope with it - and a bunch of psuedo-scientific bullshit "cures" aren't going to do that
our children are autistic - accept it and find ways to help them deal with it
posted by pyramid termite at 8:36 PM on November 23, 2009 [16 favorites]
it wasn't convincing to me and this story came out at the same time i discovered MY child was autistic
i'd like to rant a little too - it just plain pisses me off that when i go to barnes and noble, there's one magazine that's specifically about autism and it's full of fucking claptrap and nonsense about mercury and quack miracle diet cures
god forbid that the community of autistic people and their parents be served by a magazine that actually tries to deal with the subject rationally and fairly
they're not making my task dealing with this any easier with all the bullshit they're spouting - they do NOT SPEAK FOR ALL OF US and i wish they'd stop it
i do not know what the cause of autism is - they do not know what the cause of autism is - what i do know is that sometimes in life you have to accept what you've been given to deal with and learn how to cope with it - and a bunch of psuedo-scientific bullshit "cures" aren't going to do that
our children are autistic - accept it and find ways to help them deal with it
posted by pyramid termite at 8:36 PM on November 23, 2009 [16 favorites]
I have to say that it is incredibly irresponsible to cause a panic based on very little evidence.
Totally agreed. There is plenty of blame to go around. I may be a little oversensitive, as I was pretty convinced about thimerosol due to input from other parents in various communities (who were generally sensible), my SIL who teaches autistic kids and believed it too, and the Robert Kennedy Jr. piece in Salon.
At the time, we were only considering starting a family, and while I never bought vaccines=bad (being a history geek who especially loves the history of epidemics), I did run into plenty of doctors who, instead of explaining the science, were just outraged that these parents dared to question the way things were, or dared to ask for split-up vaccine schedules. Basically taking the attitude that being worried about your kid getting a horrible disease was no reason to disrupt their scheduling or change their procedures.
It's a cost-benefit decision that I sometimes think non-parents have trouble understanding. Facing something as fearful as autism, many parents are going to say, why not try something (thimerosol-free or split vaccines) that may prevent this from happening? If you're wrong you've only inconvenienced your doctor, if you're right, you've prevented your child from getting autism. When it seemed like that might be the decision you were making, the answer was clear. Sadly, many desperate parents went too far and decided the entire medical community was fraudulent, leaving them easy prey for con artists.
posted by emjaybee at 8:36 PM on November 23, 2009 [1 favorite]
Totally agreed. There is plenty of blame to go around. I may be a little oversensitive, as I was pretty convinced about thimerosol due to input from other parents in various communities (who were generally sensible), my SIL who teaches autistic kids and believed it too, and the Robert Kennedy Jr. piece in Salon.
At the time, we were only considering starting a family, and while I never bought vaccines=bad (being a history geek who especially loves the history of epidemics), I did run into plenty of doctors who, instead of explaining the science, were just outraged that these parents dared to question the way things were, or dared to ask for split-up vaccine schedules. Basically taking the attitude that being worried about your kid getting a horrible disease was no reason to disrupt their scheduling or change their procedures.
It's a cost-benefit decision that I sometimes think non-parents have trouble understanding. Facing something as fearful as autism, many parents are going to say, why not try something (thimerosol-free or split vaccines) that may prevent this from happening? If you're wrong you've only inconvenienced your doctor, if you're right, you've prevented your child from getting autism. When it seemed like that might be the decision you were making, the answer was clear. Sadly, many desperate parents went too far and decided the entire medical community was fraudulent, leaving them easy prey for con artists.
posted by emjaybee at 8:36 PM on November 23, 2009 [1 favorite]
Side effects include horrible death by fire. (via the Chicago Tribune)
What a pants on head retarded line of reasoning. You could also die in a horrible car crash while driving to the pharmacy to get antibiotics for an acute bacterial infection but I don't see calls for that to be a black box warning on a box of Amoxicillin.
posted by Talez at 8:47 PM on November 23, 2009
What a pants on head retarded line of reasoning. You could also die in a horrible car crash while driving to the pharmacy to get antibiotics for an acute bacterial infection but I don't see calls for that to be a black box warning on a box of Amoxicillin.
posted by Talez at 8:47 PM on November 23, 2009
The problem is thimerosol was removed from vaccines and the anti-vaxers just moved on to the next reason for why vaccination is bad. Logic and reason have no place in this area and people die because of it. We're not just talking fiscal harm, the anti vaccination movement has a body count. I find it impossible to brush that off as being well meaning and a bit clueless, quack medicine is dangerous and the people doing making money off it don't care.
posted by shelleycat at 9:31 PM on November 23, 2009 [1 favorite]
posted by shelleycat at 9:31 PM on November 23, 2009 [1 favorite]
I did run into plenty of doctors who, instead of explaining the science, were just outraged that these parents dared to question the way things were, or dared to ask for split-up vaccine schedules.
I think that you could turn this around and say that there are plenty of parents out there who are outraged that these doctors dare to question what they think is best for their children.
It's a pretty difficult issue to address, it seems. I think there's a lot of contempt on both sides, and the only way to really remedy this situation is to figure out how the medical community can better communicate with parents and vice versa. On the one hand, parents should have the freedom to decide what is best for their children. On the other hand, making that decision is difficult when there is so much misinformation out there. A doctor's job should be to help parents make informed decisions, but I can see how it would be frustrating to have to explain over and over again why the quacks are wrong.
posted by lexicakes at 9:35 PM on November 23, 2009 [1 favorite]
I think that you could turn this around and say that there are plenty of parents out there who are outraged that these doctors dare to question what they think is best for their children.
It's a pretty difficult issue to address, it seems. I think there's a lot of contempt on both sides, and the only way to really remedy this situation is to figure out how the medical community can better communicate with parents and vice versa. On the one hand, parents should have the freedom to decide what is best for their children. On the other hand, making that decision is difficult when there is so much misinformation out there. A doctor's job should be to help parents make informed decisions, but I can see how it would be frustrating to have to explain over and over again why the quacks are wrong.
posted by lexicakes at 9:35 PM on November 23, 2009 [1 favorite]
All I can say is I know a Neurologist who is highly respected who says that Thimerosal is not necessary very safe for some groups of kids. I'll trust this opinion over the immunologists.
This is basically true of most vaccines, since a threat of anaphylactic shock which can lead to brain injury, is associated with most vaccines. So it is definitly true that vaccines aren't 100% safe, and if this is what your neurologist friend meant he was not at odds with mainstream science.
On the other hand there is no evidence that any vaccines cause autism, so if he was implying that he was expressing an opinion far outside of the accepted facts.
posted by afu at 10:13 PM on November 23, 2009 [1 favorite]
This is basically true of most vaccines, since a threat of anaphylactic shock which can lead to brain injury, is associated with most vaccines. So it is definitly true that vaccines aren't 100% safe, and if this is what your neurologist friend meant he was not at odds with mainstream science.
On the other hand there is no evidence that any vaccines cause autism, so if he was implying that he was expressing an opinion far outside of the accepted facts.
posted by afu at 10:13 PM on November 23, 2009 [1 favorite]
I was reading about Ben Franklin's son, Frankie. Franklin believed in inoculation, but didn't get around to inoculating Frankie, who died of smallpox. Fucking smallpox. Franklin never forgave himself for that. Smallpox has since been eradicated. How? Ring vaccination. When there was an outbreak, those who contracted it were isolated and everybody who lived nearby were immunized. Since humans are the only carriers of smallpox, if anybody who might catch it was left unimmunized, the disease could be passed along.
By the way, when Franie Franklin died, there was mass fears against the smallpox vaccination. In 1736. Now, the vaccine wasn't invented at the point, but smallpox had a long history of being contained by something called variolation; it wasn't foolproof, but the fatality rate was thought to be about 2.5 percent. When Washington later ordered his troops inoculates, the mortality rate proved to be closer to one in a thousand. Smallpox mortality, in the meanwhile, was roughly 30 to 35 percent.
So why weren't the colonies immunized in general? Widespread fear about variolation, probably based around the fact that variolation really did expose them to the disease and there really was a mortality rate associated with it (actually, there is with the smallpox vaccine, but it's minuscule; nonetheless, it's the reason we don't inoculate for the disease anymore, beyond the fact that it's supposed to be eradicated.)
Nonetheless, a vaccine was available, and genuinely reduced smallpox fatalities by an overwheming margin. But people were afraid of it, and so Frankie came in contact with somebody who carried the disease, and caught it, and died.
We would think this story would be from the dark ages of medicine, but no. Vaccines still cause this weird moral panic, parents still seize on excuses to avoid it or blame their kids' illness on it -- ignoring the actual scientific evidence in favor of a paranoid theory that Big Pharma is deliberately poisoning children for the pennies they make from vaccines. And children still die as a result. There are a lot of things about Ben Franklin that I wish we would adopt; his having a dead son due to underutilized vaccines is not one of them.
posted by Astro Zombie at 10:24 PM on November 23, 2009 [7 favorites]
By the way, when Franie Franklin died, there was mass fears against the smallpox vaccination. In 1736. Now, the vaccine wasn't invented at the point, but smallpox had a long history of being contained by something called variolation; it wasn't foolproof, but the fatality rate was thought to be about 2.5 percent. When Washington later ordered his troops inoculates, the mortality rate proved to be closer to one in a thousand. Smallpox mortality, in the meanwhile, was roughly 30 to 35 percent.
So why weren't the colonies immunized in general? Widespread fear about variolation, probably based around the fact that variolation really did expose them to the disease and there really was a mortality rate associated with it (actually, there is with the smallpox vaccine, but it's minuscule; nonetheless, it's the reason we don't inoculate for the disease anymore, beyond the fact that it's supposed to be eradicated.)
Nonetheless, a vaccine was available, and genuinely reduced smallpox fatalities by an overwheming margin. But people were afraid of it, and so Frankie came in contact with somebody who carried the disease, and caught it, and died.
We would think this story would be from the dark ages of medicine, but no. Vaccines still cause this weird moral panic, parents still seize on excuses to avoid it or blame their kids' illness on it -- ignoring the actual scientific evidence in favor of a paranoid theory that Big Pharma is deliberately poisoning children for the pennies they make from vaccines. And children still die as a result. There are a lot of things about Ben Franklin that I wish we would adopt; his having a dead son due to underutilized vaccines is not one of them.
posted by Astro Zombie at 10:24 PM on November 23, 2009 [7 favorites]
Here's how it works, for those parents who withhold vaccination
Parent imagines that there is a possible chance of harming their child through vaccination (even though there is no causal link).
Parent compares this "risk" to that of child becoming sick from not being vaccinated, and reasons that they would rather risk their child being harmed from something outside their control than from something they have deliberately sanctioned, regardless of the relative "risks". If there's a perceived chance of a child being harmed from vaccination, that outweighs any odds of the reverse.
Reasonable people need to vigorously attack the causality of the vaccines-are-risky argument, but also try to understand the psychology and epistemology at work here. It's not unreasonable, just misinformed.
posted by GeorgeBickham at 12:17 AM on November 24, 2009 [1 favorite]
Parent imagines that there is a possible chance of harming their child through vaccination (even though there is no causal link).
Parent compares this "risk" to that of child becoming sick from not being vaccinated, and reasons that they would rather risk their child being harmed from something outside their control than from something they have deliberately sanctioned, regardless of the relative "risks". If there's a perceived chance of a child being harmed from vaccination, that outweighs any odds of the reverse.
Reasonable people need to vigorously attack the causality of the vaccines-are-risky argument, but also try to understand the psychology and epistemology at work here. It's not unreasonable, just misinformed.
posted by GeorgeBickham at 12:17 AM on November 24, 2009 [1 favorite]
I realize this is off-topic, but the story in the last link raises more questions than it answers:
posted by Kirth Gerson at 3:37 AM on November 24, 2009
Such treatment is restricted or prohibited in Italy because of the risk of fire.Why is there a risk of fire associated with hyperbaric chambers? What was "The blast" that dislodged a tube resulting in an explosion and fire? Why did dislodging a tube do that?
The blast at the Lauderdale-by-the-Sea clinic dislodged a tube attached to a hyperbaric chamber, resulting in an explosion and flash fire, authorities said. The investigation is continuing.
posted by Kirth Gerson at 3:37 AM on November 24, 2009
Pressurized enriched oxygen lowers ignition temperature. Pressurized nitrogen conducts heat more efficiently, increasing the rate at which fire spreads. Confined space. Static electricity.
posted by weapons-grade pandemonium at 5:52 AM on November 24, 2009
posted by weapons-grade pandemonium at 5:52 AM on November 24, 2009
A very dear friend of mine is absolutely, almost rabidly, anti-vaccine. There is nothing I can say to her that would change her mind. She did her 'research' and feels that only what she's read is the truth and everything else is just big pharma and conventional medicine hiding the truth and anyone who believes in them are sheeple who haven't done their research. I told her that I had also read about vaccinations and my opinion differed from hers and she looked at me with pitying eyes.
There is nothing that can be done to change her mind.
I really wish her and her family all the best (I do everything in my power to avoid the subject when I'm around her now because if I try and show her actual scientific studies she gets incredibly defensive and has a million alternative medicine books and websites that she puts up as evidence against anything I have to say; for instance, I once told her that thimerosol is no longer used in vaccines and her instant response was 'that's a lie, it is' - I'm not a scientist or a doctor so I can't prove it to her and she doesn't believe what they have to say anyway. I know that there's not a damned person in the world that can change her mind on that subject) but oh, it makes me both sad and incredibly frustrated.
If I forced the issue with her we would no longer be friends and that would not be my choice, it would be hers. There are so many good things about her, but her anti-vax position is not one of them.
posted by h00py at 6:33 AM on November 24, 2009
There is nothing that can be done to change her mind.
I really wish her and her family all the best (I do everything in my power to avoid the subject when I'm around her now because if I try and show her actual scientific studies she gets incredibly defensive and has a million alternative medicine books and websites that she puts up as evidence against anything I have to say; for instance, I once told her that thimerosol is no longer used in vaccines and her instant response was 'that's a lie, it is' - I'm not a scientist or a doctor so I can't prove it to her and she doesn't believe what they have to say anyway. I know that there's not a damned person in the world that can change her mind on that subject) but oh, it makes me both sad and incredibly frustrated.
If I forced the issue with her we would no longer be friends and that would not be my choice, it would be hers. There are so many good things about her, but her anti-vax position is not one of them.
posted by h00py at 6:33 AM on November 24, 2009
Even with H1N1, a disease that threatens young children, parents say, "it's too fast to market and I don't think it's proven safe" and therefore choose not to immunize their children.
I shake my head. I got my regular flu shot and I'm waiting for it to be my turn for H1N1.
I don't understand how knowingly exposing your child to a dangerous disease is better than immunizing them, even if you falsely believe that the vaccination is somehow flawed.
H1N1 has caused hospitalization for 98,000 people, and death in 3900. Numbers of casualties and/or fatalities for side-effects of the vaccine? If someone has those numbers, I'm really interested in knowing.
posted by Ruthless Bunny at 7:48 AM on November 24, 2009
I shake my head. I got my regular flu shot and I'm waiting for it to be my turn for H1N1.
I don't understand how knowingly exposing your child to a dangerous disease is better than immunizing them, even if you falsely believe that the vaccination is somehow flawed.
H1N1 has caused hospitalization for 98,000 people, and death in 3900. Numbers of casualties and/or fatalities for side-effects of the vaccine? If someone has those numbers, I'm really interested in knowing.
posted by Ruthless Bunny at 7:48 AM on November 24, 2009
Metafilter: Side effects include horrible death by fire.
posted by infinitywaltz at 9:32 AM on November 24, 2009
posted by infinitywaltz at 9:32 AM on November 24, 2009
I'm pretty sure Franklin didn't inoculate Franky against smallpox when he knew it was going around because the boy was ill with something else at the time--dysentery, maybe? It wasn't because Franklin was slacking about it; he was following medical advice (which is still valid today) about not giving vaccines when someone is ill.
That said, I agree that his statement about it is very moving.
posted by Sidhedevil at 11:16 AM on November 24, 2009
That said, I agree that his statement about it is very moving.
posted by Sidhedevil at 11:16 AM on November 24, 2009
We're spending Thanksgiving with a good friend and her family, including her sister and niece. Our friend is a nurse practitioner. The sister is thoroughly anti-vaccination. No one else in the family is particularly big on woo in any form, and the anti-vax thing caused much shouting and exchanging of emails with links to various studies etc., and the subject is pretty much taboo at this point. If H1N1 comes up in conversation, I don't know what will happen. The sister is very smart, and is charming and creative and generally a delight to be around, except about this one thing. It's incredibly frustrating to know this about her, and know that there's not a damn thing that anyone can say that will change her mind.
posted by rtha at 11:43 AM on November 24, 2009
posted by rtha at 11:43 AM on November 24, 2009
Autism does not invariably become apparent at approx 18 months. My son, who is profoundly autistic, showed clear evidence of severe learning difficulties from birth. My suspicion, based entirely on observation and personal anecdotal evidence, is that natal autism and late-onset autism are different conditions that present in similar ways and are, I'd imagine, caused by different genetic and environmental factors.
If this suspicion is right, it might go some way to explaining why it's proving so hard to pin down factors that are consistently present in studies that search for the causes of autism.
posted by MinPin at 12:06 PM on November 24, 2009
If this suspicion is right, it might go some way to explaining why it's proving so hard to pin down factors that are consistently present in studies that search for the causes of autism.
posted by MinPin at 12:06 PM on November 24, 2009
The thing is, it's not necessarily illogical to avoid vaccination. Consider the situation where everyone else is vaccinated. Should you get yourself vaccinated? If the risk of adverse effects from vaccination is 0.1% and the risk of catching the disease is less than that (and the adverse effects are similar in severity), then it's reasonable to avoid vaccination. Selfish, sure, but logical.
That said, the thing to do then is to proclaim yourself in favor of the vaccination while quietly avoiding it. Encouraging others to avoid it is liable to hurt you. I suppose that's how people assuage their feelings of guilt.
Of course, once the vaccination rate drops to the point of serious outbreaks, it becomes obvious once again that it's safer to get vaccinated. And so it'll go in cycles, with everyone attempting to manage their individual level of risk as best they are able. The true victims are those who are unable to get shots, because they're too young or too immunocompromised.
posted by alexei at 8:33 PM on November 24, 2009 [1 favorite]
That said, the thing to do then is to proclaim yourself in favor of the vaccination while quietly avoiding it. Encouraging others to avoid it is liable to hurt you. I suppose that's how people assuage their feelings of guilt.
Of course, once the vaccination rate drops to the point of serious outbreaks, it becomes obvious once again that it's safer to get vaccinated. And so it'll go in cycles, with everyone attempting to manage their individual level of risk as best they are able. The true victims are those who are unable to get shots, because they're too young or too immunocompromised.
posted by alexei at 8:33 PM on November 24, 2009 [1 favorite]
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I have been to several Autism conferences and it would turn your stomach to see these people pushing their "miracle cures" on these poor desperate parents.
posted by cjets at 2:57 PM on November 23, 2009 [7 favorites]