Around a week or two ago, I found out that this conference is to be held literally within walking distance of my house. To be blunt, it's a spectacular quack convention. Wakefield is keynoting (although the "keynote" will be delivered at the end of the conference in a notable break from standard protocol). The list of presenters is practically a "who's who" of the quack community, and the conference is to be held by one of the major national anti-vaccination organizations.
I am thoroughly disgusted by this and am presently trying to organize a protest. Unfortunately, this leaves me with limited time (and energy) to blog.
Relevant support -- from anyone who can provide it -- would be greatly appreciated.
Thursday, October 29, 2009
Wednesday, October 28, 2009
Reasons Why The Autistic Community Should Fight The Anti-Vaccination Quacks -- A Working Document
This is the working document for a future entry. The items below are not in any particular order (I plan to do a countdown, listing them in ascending order of importance and descending number), and the below is not a complete list. I am more than open to suggestions and I will add links and references when I finally get around to posting the final document.
1. "Don't vaccinate your children because vaccines cause autism" demonizes autism, portrays autistics as "damaged goods", and contributes immensely to psychosocial stigma.
4. The vaccine/mercury causation hypothesis is the nominal basis for a number of harmful quack treatments, such as chelation and the Lupron protocol.
5. Allies against the anti-vaccination quacks are generally highly motivated, skeptical, highly intelligent, and/or well-placed to help us fight other forms of quackery. The foot-in-the-door phenomenon applies, and the alliances formed accordingly can be used to our political advantage.
6. We can make a difference in the fight.
7. Sitting back and allowing one form of quackery to go unfought leaves the door open to others.
8. The anti-vaccination movement kills people. As the anti-vax movement targets the families of autistic children, this often means that it's us or our families who get sick and die.
9. Killing or recklessly endangering other people in the name of preventing people like us from existing is most certainly not acceptable.
10. Anti-vaxxers guilt-trip the families of autistic children over vaccinating their autistic child. This can have tragic consequences for autistic people.
11. The anti-vaccination crowd often acts as a concerted mob, bullying and acting to exclude people who disagree with them (and especially those on the spectrum who do so). This greatly adds to the difficulties in having reasoned discourse between autistic individuals and parents, and contributes to our exclusion from the discussion about autism. (Thanks to Kim Wombles)
1. "Don't vaccinate your children because vaccines cause autism" demonizes autism, portrays autistics as "damaged goods", and contributes immensely to psychosocial stigma.
2. It's the right thing to do.
3. "Vaccines cause autism" is wrong -- in the sense of "incorrect". We have enough junk science in the field of autism even without the vaccine causation hypothesis.4. The vaccine/mercury causation hypothesis is the nominal basis for a number of harmful quack treatments, such as chelation and the Lupron protocol.
5. Allies against the anti-vaccination quacks are generally highly motivated, skeptical, highly intelligent, and/or well-placed to help us fight other forms of quackery. The foot-in-the-door phenomenon applies, and the alliances formed accordingly can be used to our political advantage.
6. We can make a difference in the fight.
7. Sitting back and allowing one form of quackery to go unfought leaves the door open to others.
8. The anti-vaccination movement kills people. As the anti-vax movement targets the families of autistic children, this often means that it's us or our families who get sick and die.
9. Killing or recklessly endangering other people in the name of preventing people like us from existing is most certainly not acceptable.
10. Anti-vaxxers guilt-trip the families of autistic children over vaccinating their autistic child. This can have tragic consequences for autistic people.
11. The anti-vaccination crowd often acts as a concerted mob, bullying and acting to exclude people who disagree with them (and especially those on the spectrum who do so). This greatly adds to the difficulties in having reasoned discourse between autistic individuals and parents, and contributes to our exclusion from the discussion about autism. (Thanks to Kim Wombles)
Wednesday, October 14, 2009
On Attitudes
I don't think any regular readers of this blog will be terribly surprised to hear that the sort of attitudes they take and encourage their members to take is one of the things that most continuously frustrates me about the various parents' groups in the autism community.
It is worthwhile, however, to once and a while contemplate just what a healthy attitude is. It's also worthwhile to acknowledge that organizations dedicated to other disabilities often get it right.
I was recently reminded of this by a series of ads by United Cerebral Palsy. Some of them were especially classic.
These aren't all recent, of course, but they do help to illustrate what a healthy attitude towards a disability consists of. Now if only the autism organizations would start to follow UCP's lead...
It is worthwhile, however, to once and a while contemplate just what a healthy attitude is. It's also worthwhile to acknowledge that organizations dedicated to other disabilities often get it right.
I was recently reminded of this by a series of ads by United Cerebral Palsy. Some of them were especially classic.
These aren't all recent, of course, but they do help to illustrate what a healthy attitude towards a disability consists of. Now if only the autism organizations would start to follow UCP's lead...
Monday, October 12, 2009
Vaccination Quackery Revisited
The following is adapted from an e-mail I recently sent. The response I got was... "interesting".
I am a scientist by training. When asked scientific questions, I tend to answer them as a scientist. Scientific questions, like the question of whether vaccines cause autism, are not about belief. They are about evidence and facts -- and the fact is that the courses of action suggested by the anti-vaccination movement kill people. Worse, the advice and propoganda in question kill people, and not only the people who take it. This is why I take the time to study something before I comment on it or talk about it. I'm aware that bad advice and bad information kills.
I am not joking about this. I consider this sort of thing to be a (literally) deadly serious matter. I also don't make unqualified or categorical statements in this sort of matter without a lot of very strong evidence.
England has recently seen a resurgance of measels, resuling in considerable suffering and death. Australia has seen a tragic pertussis outbreak. A very large number of illnesses and deaths here in the US can be directly attributed to vaccination refusal. This is without breaking herd immunity -- and the thought of that happening (what happened in a small segment of Australia), frankly, scares me.
In addition to this, this sort of thing creates and exacerbates the problem of what are known as nocebo and harmful observer-expectency effects. To give you an illustration of how powerful nocebo effects can be, chemotherapy trials have been known to cause the control group (who are not recieving real drugs) to lose hair, start vomitting, and generally suffer all of the negative side-effects of chemotherapy... despite having only been given a saline drip.
This happens purely because said controls expect it to. It's not an effect of the drug, which they haven't been given.
Now, if this can happen with a saline drip (which is about as harmless as it gets), just what makes people think vaccines are immune from this? Things get worse when harmful observer-expectancy effects are factored in. Expectancy effects have killed people.
Of course, all of the above consequences could be forgiven if there were a legitimate danger the anti-vaccination groups were warning against. Leaving aside just how insulting the "don't vaccinate your kids because vaccines cause autism" rhetoric is (and how, exactly, do you think it makes autistic individuals feel when they see parents going on national television and advising other parents to risk both their children's lives and the lives of other people's children rather than risk having a child like them?), there is also the matter of the truth of these claims, which are pretty much universally bunk.
To provide an illustration of just how bad it is, the e-mail which provoked the original version of the above linked me to this website. I didn't have time (or the stomach) to go through and debunk everything said there, but I did provide an example to give her some idea of just how bad its information is.
The site's first citation to "prove" that flu shots are dangerous (and thereby presumably the one they regard as "best") is a paper by Mark and David Geier, which was published in 2003 in the Journal of American Physicians and Surgeons.
The authors of that study are infamous quacks who are guilty of academic fraud and who make their living by chemically castrating children. The "journal" it was published in is an infamous hotbed of quackery which, among other things, has published politically-motivated articles claiming that abortion causes breast cancer and that shaking your baby is safe (and that shaken-baby syndrome doesn't exist), racist articles with utterly absurd claims about illegal immigrants (e.g. this one), and articles condemning both the practice of science-based medicine (e.g. this one) and peer-review (e.g. this one).
And this is without going into the methodological quality of the article (poor) or any of the scientific tactics I'd use to demonstrate that the article was utterly, totally meaningless.
That is just one example. Think about it.
I am a scientist by training. When asked scientific questions, I tend to answer them as a scientist. Scientific questions, like the question of whether vaccines cause autism, are not about belief. They are about evidence and facts -- and the fact is that the courses of action suggested by the anti-vaccination movement kill people. Worse, the advice and propoganda in question kill people, and not only the people who take it. This is why I take the time to study something before I comment on it or talk about it. I'm aware that bad advice and bad information kills.
I am not joking about this. I consider this sort of thing to be a (literally) deadly serious matter. I also don't make unqualified or categorical statements in this sort of matter without a lot of very strong evidence.
England has recently seen a resurgance of measels, resuling in considerable suffering and death. Australia has seen a tragic pertussis outbreak. A very large number of illnesses and deaths here in the US can be directly attributed to vaccination refusal. This is without breaking herd immunity -- and the thought of that happening (what happened in a small segment of Australia), frankly, scares me.
In addition to this, this sort of thing creates and exacerbates the problem of what are known as nocebo and harmful observer-expectency effects. To give you an illustration of how powerful nocebo effects can be, chemotherapy trials have been known to cause the control group (who are not recieving real drugs) to lose hair, start vomitting, and generally suffer all of the negative side-effects of chemotherapy... despite having only been given a saline drip.
This happens purely because said controls expect it to. It's not an effect of the drug, which they haven't been given.
Now, if this can happen with a saline drip (which is about as harmless as it gets), just what makes people think vaccines are immune from this? Things get worse when harmful observer-expectancy effects are factored in. Expectancy effects have killed people.
Of course, all of the above consequences could be forgiven if there were a legitimate danger the anti-vaccination groups were warning against. Leaving aside just how insulting the "don't vaccinate your kids because vaccines cause autism" rhetoric is (and how, exactly, do you think it makes autistic individuals feel when they see parents going on national television and advising other parents to risk both their children's lives and the lives of other people's children rather than risk having a child like them?), there is also the matter of the truth of these claims, which are pretty much universally bunk.
To provide an illustration of just how bad it is, the e-mail which provoked the original version of the above linked me to this website. I didn't have time (or the stomach) to go through and debunk everything said there, but I did provide an example to give her some idea of just how bad its information is.
The site's first citation to "prove" that flu shots are dangerous (and thereby presumably the one they regard as "best") is a paper by Mark and David Geier, which was published in 2003 in the Journal of American Physicians and Surgeons.
The authors of that study are infamous quacks who are guilty of academic fraud and who make their living by chemically castrating children. The "journal" it was published in is an infamous hotbed of quackery which, among other things, has published politically-motivated articles claiming that abortion causes breast cancer and that shaking your baby is safe (and that shaken-baby syndrome doesn't exist), racist articles with utterly absurd claims about illegal immigrants (e.g. this one), and articles condemning both the practice of science-based medicine (e.g. this one) and peer-review (e.g. this one).
And this is without going into the methodological quality of the article (poor) or any of the scientific tactics I'd use to demonstrate that the article was utterly, totally meaningless.
That is just one example. Think about it.
Friday, October 9, 2009
On "Restricted and Repetitive" interests
Everyone has their hobbies, their interests, and their experiences. These, of course, vary... but their usually is a pattern to them.
And no, I'm not referring to the relationship to one's life story. If that's incorporated, there's always a pattern to them.
This isn't to say, mind, that the pattern is always the same... or even of the same type. Every person has their own pattern of interests.
This pattern says a lot about that person, too... but this isn't really the forum for a discussion of that.
Perhaps more importantly, there's a relationship between components of this pattern. My interest in Japanese langugage, for instance, is strongly related to my interest in Japanese culture. This, in turn, is a portion of my interest in cultural anthropology. My interest in cultural anthropology is a minor focus area within my interest in the scientific study of people. To be more specific, that particular interest extends across psychology, microsociology, and cultural anthropology. How my interests in psychopharmacology and experimental methodology tie into this should be pretty obvious.
The thing is, autistic interests tend to follow generally different patterns than neurotypical interests. The connections (and definitions!) of autistic interests tend to be different as well.
To me, there's an infinite variety in the peer-reviewed literature. By reading through it, I can learn about endless topics, find out all sorts of really neat things... it's like an infinite and ever-expanding cornucopia of knowledge about whatever obscure topic I might want to learn about. I can get lost within that for hours, days... or even weeks.
To someone else, it probably looks like I'm just reading all the time -- a "restricted" and "repetitive" interest. But... what of the main activity of many biblical scholars? What do you call it when they not only read all the time, but read the same book? Similar things can be said of most, if not all, autistic perseverations.
To put it another way, both the degree to which something is "restricted" and the degree to which it is "repetitive" are highly subjective.
Of course, this isn't to say that an unusual pattern of interests doesn't come with its fair share of disadvantages. For instance, someone who loves sports can always find someone to chat with about the latest Cubs game (or whatever). Someone who loves romance novels can usually find someone to ask if they've read any good books lately.
Now... imagine the stares I'd get if I were to just casually ask someone, "Read any good methodology papers lately?"
That is, in my opinion, the largest problem with having a "restricted and repetitive" set of interests.
And no, I'm not referring to the relationship to one's life story. If that's incorporated, there's always a pattern to them.
This isn't to say, mind, that the pattern is always the same... or even of the same type. Every person has their own pattern of interests.
This pattern says a lot about that person, too... but this isn't really the forum for a discussion of that.
Perhaps more importantly, there's a relationship between components of this pattern. My interest in Japanese langugage, for instance, is strongly related to my interest in Japanese culture. This, in turn, is a portion of my interest in cultural anthropology. My interest in cultural anthropology is a minor focus area within my interest in the scientific study of people. To be more specific, that particular interest extends across psychology, microsociology, and cultural anthropology. How my interests in psychopharmacology and experimental methodology tie into this should be pretty obvious.
The thing is, autistic interests tend to follow generally different patterns than neurotypical interests. The connections (and definitions!) of autistic interests tend to be different as well.
To me, there's an infinite variety in the peer-reviewed literature. By reading through it, I can learn about endless topics, find out all sorts of really neat things... it's like an infinite and ever-expanding cornucopia of knowledge about whatever obscure topic I might want to learn about. I can get lost within that for hours, days... or even weeks.
To someone else, it probably looks like I'm just reading all the time -- a "restricted" and "repetitive" interest. But... what of the main activity of many biblical scholars? What do you call it when they not only read all the time, but read the same book? Similar things can be said of most, if not all, autistic perseverations.
To put it another way, both the degree to which something is "restricted" and the degree to which it is "repetitive" are highly subjective.
Of course, this isn't to say that an unusual pattern of interests doesn't come with its fair share of disadvantages. For instance, someone who loves sports can always find someone to chat with about the latest Cubs game (or whatever). Someone who loves romance novels can usually find someone to ask if they've read any good books lately.
Now... imagine the stares I'd get if I were to just casually ask someone, "Read any good methodology papers lately?"
That is, in my opinion, the largest problem with having a "restricted and repetitive" set of interests.
Monday, October 5, 2009
Megavitamin Stupidity, Part Two
As I observed in a previous post, people tend to think of the effects of having not enough of a vitamin, but tend to ignore the effects of having too much. As such, I've compiled a list of some of the known effects of the latter. This is not intended to be a comprehensive list or anything -- just a simple list of some of the health hazards of having too much of a vitamin in your system. It's not even a full list of the effects of every vitamin, just the few that were easiest to find data on. As I note below, my research methods for this were not anything special.
It's also worth noting that there are differences between chronic and acute vitamin toxicity. Acute toxicity generally requires a higher dose of the vitamin in question, while chronic effects occur from a lower dose over a longer period of time. Both can present substantial health risks.
Finally, parenteral administration is generally more dangerous than oral. There are a number of safeguards that normally prevent the body from absorbing a massive overdose of certain vitamins that don't necessarily apply to "vitamin shots" (thiamine comes to mind here).
My research strategy was hardly anything to write home about -- I went down to NSU's medical library and checked out a textbook. This isn't information that's hard to come by... unless you're trying to get it from the various fad "health gurus", from DAN doctors, or from other, similar sources.
So, without further ado...
It's also worth noting that there are differences between chronic and acute vitamin toxicity. Acute toxicity generally requires a higher dose of the vitamin in question, while chronic effects occur from a lower dose over a longer period of time. Both can present substantial health risks.
Finally, parenteral administration is generally more dangerous than oral. There are a number of safeguards that normally prevent the body from absorbing a massive overdose of certain vitamins that don't necessarily apply to "vitamin shots" (thiamine comes to mind here).
My research strategy was hardly anything to write home about -- I went down to NSU's medical library and checked out a textbook. This isn't information that's hard to come by... unless you're trying to get it from the various fad "health gurus", from DAN doctors, or from other, similar sources.
So, without further ado...
- An overabundance of vitamin A is associated with hair loss, ataxia, bone and muscle pain, cheilitis, conjunctivitis, headache, liver damage, hyperlipemia, hyperostosis, membrane dryness, itching, pseudotumor cerebri, various skin disorders, and visual impairment. Vitamin A also acts as a teratogen, but this usually isn't relevant to the use of DAN-reccommended megavitamin supplements (i.e. I've never heard of a DAN protocol being used to treat a pregnant woman).
- Vitamin D poisoning can result in hypercalcemia, hypercalciuria, anorexia, nausea, vomitting, thirst, polyuria, muscular weakness, joint pains, diffuse demineralization of bones, disorientation, and irreversable calcification of the heart, lungs, kidneys, and other soft tissues. The vast majority of the death-by-vitamin-overdose case reports I've read (which may or may not be a representative sample) have been due to hypervitaminosis D.
- Vitamin B3 overdose effects depend on the specific form of the vitamin involved. Nicotinic acid toxicity is associated with vasodilation, burning or stinging sensations in the face and hands, nausea, vomiting, diarrhea, hyperpigmentation of the skin, abnormal glucose tolerance, hyperuricemia, peptic ulcers, hepatomegaly, and jaundice. Nicotinamide overdose has been known to cause liver damage and may cause cancer (further research was required according to the textbook I read, which was published in 2001. I have not conducted a search for more recent information).
- Chronic overdose of Vitamin B6 has been associated with neuropathy (motor, sensory, and peripheral), vesicular dermatosis, loss of reflexes, impaired touch sensation in limbs, dizziness, nausea, breast discomfort or tenderness, and photosensitivity.
This is nowhere near a complete list, even from within the sole book which served as my reference. Think on that.
Reference:
Rucker, R., Suttie, J., McCormick, D., & Machlin, L. (Eds.). (2001). Handbook of Vitamins (3rd Ed., Revised and Expanded). New York, NY: Marcel Dekker, Inc.
Sunday, October 4, 2009
A Brief Comment on Experimental Design
In a hilarious demonstration of why proper experimental design (and specifically data analysis) is so important, researchers managed to "show" (in a recent conference poster) that a dead salmon responds to human emotion.
Obviously, there was no such thing actually going on.
The correct conclusion? That if a study isn't properly designed (and I include analysis as part of the design), it's quite possible for it to find effects that aren't really there.
We see this sort of thing all the time in the field of autism research... and no small part of it is due to groups like DAN. Gyah.
Obviously, there was no such thing actually going on.
The correct conclusion? That if a study isn't properly designed (and I include analysis as part of the design), it's quite possible for it to find effects that aren't really there.
We see this sort of thing all the time in the field of autism research... and no small part of it is due to groups like DAN. Gyah.
Megavitamin Stupidity, Part One
The principle of homeostasis is one of the most basic in medicine. My experience with parents of autistic children has been that they don't understand this.
Oh, don't get me wrong -- it's not their fault. It's hardly reasonable to expect every parent of an autistic child to have an understanding of it.
To expect at least most them to have heard about it, yes -- it's covered in most high-school biology courses (or it's supposed to be). Understanding, however... let's just say that American high schools often fail in their goal of promoting understanding of the subjects they're supposed to teach.
In essence, however, the principle states that organisms exist in a state of balance, maintained by a series of feedback mechanisms. Too little of something important can be bad -- but so can too much of the same thing. While the relationship between insulin and blood sugar is perhaps the most common example of this referenced in a purely medical context in popular culture (mostly because of the conditions of hyperinsulinemic hypoglycemia and diabetes, each of which is defined by the a type of breakdown of this balance), there are countless others.
So -- why is this important for understanding the problems with megavitamins?
Well, the principle of homeostasis accounts for why the same thing can have radically different effects depending on how much of it is involved... or, for that matter, why extremely low amounts of it and extremely high levels of it can have the same or similar effects.
It's all about the dosing... which is where the problem comes in.
Vitamins, like all other chemicals (and yes, vitamins are chemicals -- get over it), are subject to this. Simply put, it's quite possible to overdose on them.
I have heard -- anecdotally -- mentions of a child overdosing on Vitamin C from drinking too much orange juice... but most of the stories I hear of involve supplementation.
No, not megavitamin supplementation, either. I'm talking about regular, normal, over-the-counter dietary supplements. There's a very good reason why modern multivitamins are really, really careful about their iron content, for instance (although that's technically a mineral, not a vitamin).
Vitamins are one of the classic cases of "a little medical knowledge is worse than none" -- and, as I write this, I'm visualizing an exchange:
"But it's good for you!"
"Yeah, well, it's good for you to have enough... too much and it becomes a poison. Homeostasis and all."
Anyway, the point of all of this (beyond general medical education) is pretty simple -- as with all drugs, it's quite possible to overdose on vitamins.
And yes, vitamins, when taken as suplements (at least -- their status as such when consumed in food is more debatable), are drugs.
There's even a medical term for this -- it's called "hypervitaminosis".
So, in short -- people always tell you about the health benefits of vitamins. They don't tell you about the hazards thereof. Going overboard is stupid and can risk serious health problems.
QED.
Next time, I'll detail exactly what happens with overdoses of certain vitamins. I think my readers will be unpleasantly surprised.
Oh, don't get me wrong -- it's not their fault. It's hardly reasonable to expect every parent of an autistic child to have an understanding of it.
To expect at least most them to have heard about it, yes -- it's covered in most high-school biology courses (or it's supposed to be). Understanding, however... let's just say that American high schools often fail in their goal of promoting understanding of the subjects they're supposed to teach.
In essence, however, the principle states that organisms exist in a state of balance, maintained by a series of feedback mechanisms. Too little of something important can be bad -- but so can too much of the same thing. While the relationship between insulin and blood sugar is perhaps the most common example of this referenced in a purely medical context in popular culture (mostly because of the conditions of hyperinsulinemic hypoglycemia and diabetes, each of which is defined by the a type of breakdown of this balance), there are countless others.
So -- why is this important for understanding the problems with megavitamins?
Well, the principle of homeostasis accounts for why the same thing can have radically different effects depending on how much of it is involved... or, for that matter, why extremely low amounts of it and extremely high levels of it can have the same or similar effects.
It's all about the dosing... which is where the problem comes in.
Vitamins, like all other chemicals (and yes, vitamins are chemicals -- get over it), are subject to this. Simply put, it's quite possible to overdose on them.
I have heard -- anecdotally -- mentions of a child overdosing on Vitamin C from drinking too much orange juice... but most of the stories I hear of involve supplementation.
No, not megavitamin supplementation, either. I'm talking about regular, normal, over-the-counter dietary supplements. There's a very good reason why modern multivitamins are really, really careful about their iron content, for instance (although that's technically a mineral, not a vitamin).
Vitamins are one of the classic cases of "a little medical knowledge is worse than none" -- and, as I write this, I'm visualizing an exchange:
"But it's good for you!"
"Yeah, well, it's good for you to have enough... too much and it becomes a poison. Homeostasis and all."
Anyway, the point of all of this (beyond general medical education) is pretty simple -- as with all drugs, it's quite possible to overdose on vitamins.
And yes, vitamins, when taken as suplements (at least -- their status as such when consumed in food is more debatable), are drugs.
There's even a medical term for this -- it's called "hypervitaminosis".
So, in short -- people always tell you about the health benefits of vitamins. They don't tell you about the hazards thereof. Going overboard is stupid and can risk serious health problems.
QED.
Next time, I'll detail exactly what happens with overdoses of certain vitamins. I think my readers will be unpleasantly surprised.
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