Unfortunately, as we have been dreading for the last four months or so since her relapse was diagnosed, my mother-in-law passed away from breast cancer in hospice. She died peacefully, with my wife and the rest of her family at her side. As you might expect, I do not much feel like blogging. Because I foresaw this day coming, however, I did set up a series of “Best of” reposts to autopost for you while I am in mourning. Some I have even updated and/or spiffed up with actual editing. If you’ve been reading less than a year or two, they’re new to you. This particular one I’ve updated slightly. It also gives me an idea for a post about cancer which, perhaps, when I’m ready to produce new material for the blog again I’ll write.
At the risk of muscling in on Bronze Dog‘s territory, I’ve encountered a phenomenon that ought to be in his list of doggerel but doesn’t appear to be. It appeared in the comments of my post about the Arthur Allen-David Kirby debate and my discussion of how the human tendency to see patterns where none really exist, coupled with the emotional investment the parents of autistic children have in their children and fueled by unscrupulous purveyors of harmful woo like Mark and David Geier, manages to keep the myth that mercury in vaccines is responsible for the “epidemic” of autism alive. My point was not that these parents are stupid (as in any population of human beings, some are stupid, some are very intelligent, and most are somewhere in-between) but rather how the above factors can make the science that is increasingly failing to support the contention that mercury in vaccines causes autism seem at best indifferent to their plight or at worst part of the perceived conspiracy to hide the “truth from them.” My comments brought a stinging rebuke from a reader named Steve:
I love the comments from people who don’t deal with autism every day diagnosing the mind set and beliefs of those that do. I am the parent of an autistic child and I do believe mercury is a part of the issue. I watched my son’s communication and social skills diminish rapidly within a week of receiving a flu shot containing thimerasol. I have used chealtion therapy and seen it work, I have used special diets (GFCF) and biomed supplements and seen immediate results.
I was not anti-vaccine, I am now though having directly seen its impact. I am not anti Big Pharma, my father worked for Big Pharma for 36 years retiring as an executive with one of the largest pharma firms in the world. I am not looking to sue Big Pharma or the Government, I just want truthful answers from them. Remember when smoking was not bad for you, the same will eventually come out about thimerasol and the over vaccination of our kids.
Follow the money… You think us parents are in this for the money? I have spent over $70,000 on my sons care the past two years in therapy, supplements and medical care. All out of my own pocket, so to say we are in this for the money is idiotic. I would do it all over again as well because I have seen dramatic improvements in him.
If any of you critics ever walked a day in the shoes of the parent of an autistic child your mindset would change rapidly.
This is a tough criticism to deal with, but not because Steve makes much of a valid point. It’s tough to deal with because it’s clearly meant to imply, in essence, that his personal experience trumps everything, that his personal problems dealing with an autistic child render my observations invalid. In other words, it relies on emotion rather than addressing the argument based on evidence and, whether it is the intent of the person using this doggerel, seeks to embarrass the skeptic into silence. In essence, Steve is using the doggerel that says: “You haven’t walked in my shoes; so you can’t understand!” On one level he is correct. No doubt he has had many difficulties, and no doubt I would never be able to understand at a truly visceral level how hard it is for him or other parents, no matter how empathetic I may try to be. No one, least of all me, would ever say that it’s anything but extremely difficult to raise an autistic child, particularly if that child is lower-functioning. (Indeed, I’m not sure that I could deal with the day-to-day issues that no doubt Steve handles with aplomb.)
None of this means that my observations should be discounted just because I do not personally have an autistic child or that it’s valid to assume that my mindset would “change rapidly” if I were forced to “walk a day in the shoes of a parent of an autistic child.” It may or may not. Also, I assure Steve that, even though my mindset would probably change in many ways were I forced to walk in those shoes, there is no doubt whatsoever in my mind that, with regard to the now discredited idea that mercury in vaccines causes autism, my mindset would change not one iota, and that’s because the only thing that could change my mind about it would be convincing epidemiological and/or scientific evidence in support of the concept, evidence that is at present sorely lacking and shows no sign of being reported any time soon while study after study pile up showing no link between autism and mercury. Kirby’s risible handwaving and speculations would not seem any more plausible to me if I had an autistic child.
As for my observations about the “mindset” of parents of autistic children, I do not just speculate idly, but rather base them on the very words of many of those who post on my blog, and on Kevin‘s, Joseph‘s, Dad of Cameron‘s, and Autism Diva‘s blog, as well, plus numerous online conversations and forums. It is the subset of parents who voice these opinions about vaccines, big pharma, and the CDC about which I made my observations. Moreover, when coupled with, for example, my experience with alternative medicine aficionados, it becomes clear that there is a set of parents who, as I stated, erroneously generalize the diagnosis of their child’s autism near the time of his or her vaccination to mean that vaccines caused the autism, who truly seem to believe there was and/or is a conspiracy by the CDC to keep the “truth” about vaccines from them, and who fall under the sway of the cottage industry designed to sell them “cures” based on the mercury myth, even to the point of spending enormous sums of money to subject their autistic children to potentially dangerous “treatments,” such as chelation therapy and chemical castration with Lupron–all based on the mercury “hypothesis.” Again, all of this probably derives from the human mind’s tendency to look for and latch on to patterns, coupled with a parent’s understandable desperation to do something–anything–to help their child. Science is needed to see if those patterns are valid, if correlation truly does equal causation. In the case of mercury and autism, science has shown no correlation.
Suffice it to say that, whatever other insights having an autistic child gives, in and of itself it does not give a parent any particular insight into the science. In fact, it can be a hindrance to understanding the science because humans are prone to confuse correlation with causation, and having a close, emotional attachment makes the problem, along with those of confirmation bias, selective memory, being confused by regression to the mean, etc., even harder to overcome.
None of this means the parents who fall for the antivaccine snake oil are necessarily stupid or dumb (although, clearly, some–like commenters John Best or Dawn, not to mention celebrity antivaccine airhead Jenny McCarthy–are; any group of humans will have its morons). In fact, my spotty anecdotal experience suggests to me that it is the highly educated parents who tend to be most prone to rejecting the science based on their own personal experience. My speculation is that this is because they know they’re smart and can’t accept that they can be so easily fooled by the normal cognitive shortcomings and biases all humans have. Scientists know better, which is why we rely on the scientific method to minimize, at least as much as possible, the effects of such cognitive shortcomings and biases. The scientific method, far from being an expression of superiority, is a humble admission that scientists are human too, and that we share every single one of those cognitive shortcomings that interfere with our ability to make correct conclusions.
But back to the doggerel. Let’s take a closer look at this particular one. If we were to concede Steve’s point, then I’d have to ask: Does that mean that I can’t comment on cancer and cancer patients if neither I nor anyone in my immediate family has ever had cancer? (And how do you know that I or one of my family members hasn’t had cancer?) [Orac note: Obviously this post was written long before the sad recent events that resulted in my running “reruns” several days.] Does that mean I’m not suitable to comment on, for instance, homelessness if I’m not myself homeless or don’t have a homeless family member? Or what about religious cults? I’ve never belonged to one, nor has any of my immediate family? Am I therefore disqualified to discuss cults, the sort of thinking that leads to cults, etc.? (The list goes on.) Of course not. And, of course, it’s hard not to point out that David Kirby does not have an autistic child, either, but he’s certainly not shy when it comes to presenting his views on what the parents of autistic children want and believe. Just read his book and articles and listen to his talks. Why is it that this lack of any direct personal experience with autism is not a problem for David Kirby but it is for me and any skeptic who doesn’t happen to have an autistic family member? It couldn’t be because I’m critical of this focus on mercury (mainly because the science doesn’t support it), while David Kirby buys into the mercury conspiracy-mongering and tells parents like Steve what they want to hear, namely that it really is the mercury, could it? Perish the thought!
In any case, my usual counter to the doggerel that I can’t understand because or that my mind would change if I were forced to walk in the “other side’s” shoes is that almost certainly my mind would change about some things but that it would almost certainly not change about the pseudoscience in question, be it mercury and autism, the Hoxsey therapy and cancer, or whatever. That’s because I base my opinions on these matters on science, and unless new and convincing scientific evidence emerges to contradict existing evidence I see no reason to change my mind. Moreover, here’s another fallacy of the “shoes” argument: Being directly involved with something as demanding and emotionally draining as raising an autistic child can undermine a parent’s objectivity to the point where the transparently dubious arguments of someone like David Kirby start to sound plausible, particularly if that parent does not have the background in science to see them for what they are, so desperate to make their child “normal” again is he or she. Because autism is frequently diagnosed around the time period children are getting their vaccines, this is seen as evidence that vaccines cause autism, and parents spending $70,000 and more on interventions like chelation therapy and special diets look for any sign of improvement afterwards. Often they find it, thanks to confirmation bias and the lack of ever having observed a control group. They “see” what science does not, but what they “see” is misleading.
In any case, this bit of doggerel suggesting that because you haven’t experienced what the other person has experienced your opinion is not to be taken as seriously can occasionally be a valid argument (in the case where primary experience is essential to be qualified to form an opinion), and it is true that far too many people will spout off about topics about which they have no personal experience, but lack of personal experience is far less of an issue if the person has spent the time learning about the topic at hand. Far more frequently the “shoes” doggerel is nothing more than a distraction, a means of excusing oneself from having to address the substance of the argument being criticized.
Maybe Bronze Dog will add this one to his Doggerel series, perhaps with his own inimitable take on it.
37 replies on “You haven’t walked in my shoes!”
So only foot fetishists can voice an opinion on some topics? Whatever.
What idiot would walk a mile in a moron’s shoes?
The other problem with Steve’s argument is that smoking was known to have negative effects-it’s the culture that said tobacco was okay. There had been scientific evidence building for something like one hundred and fifty years.
Thimerosol? Vaccines? The longer we use them, the more we find how safe, and effective, they are. The evidence just isn’t there to show any relation between ASDs and vaccines.
It’s precisely because you’re not a parent of a child on the spectrum, and yet have devoted so much time to writing about vaccines and autism, the “alternative” treatments that parents have tried and keep trying, and much more, that gives all you say extra weight.
Thanks more than much from this parent (whose shoes you couldn’t walk in as it is—-they’re several sizes smaller than my son’s)
The problem I have with these people is that I walked in the shoes before there was all the hoopla. I have an adult son who needs transitional services between school and work, and it is not working.
He is too high functioning to qualify for the state’s Department of Developmental Disabilities, and he is failing community college and not really get good help in finding a actual job by the local organization who works with disabled folks for job hunting (contracted by the state’s Dept. of Vocational Rehabilitation). He is slipping through the cracks.
All of the focus on vaccines (and my son did not get several of them, though he did get seizures by having one of the diseases that there is now a vaccine for!), is taking away from the REAL needs of young adults like my son. There has to be something PAST the Individuals with Disabilities Education Act, which kind of drops young adults when they turn 21.
I tried to sincerely answer Mr. Champagne’s question without realizing the past history. I am betting that in ten years he will have some of the same issues we are having now, and will probably get the same lack of services due to the idiotic focus on vaccines.
Yes, I have walked in your shows… several miles ahead of you.
Wow, Chris… I hadn’t thought about that– about the young adults who are too high-functioning to get help, but not socially-developed enough to be able to get a job. One more reason for me not to sleep nights. Have you blogged about this issue anywhere? I’d be interested in reading more about the problems other people have encountered.
To me, the ironic part is that I have walked in “their shoes” and I eventually came to realize that we were chasing our tail with all the so-called “autism treatments” that the “alternative” crowd is proposing.
What I can’t understand is how parents who are into “biomedical” autism treatments and have little or no education or training in biology can read what I write and not get a cold chill. Here I am, a person with more education and experience in biology than 99% of the population, a person who tried the diets, the supplements, the wacky treatments, the behavioral programs, and I’m telling them that it doesn’t work and it doesn’t make sense.
What makes them think they know better than me?
When I was in the service, I saw one of the EOD (explosive ordnance disposal – the “bomb squad”) guys with a T-shirt that said “If you see me running, you’d better run, too!”.
That pretty much sums up my feeling about parents who discount my story and those of others who tell them “We tried it and it doesn’t work. We listened to the ‘explanations’ and they are nonsense.”
Prometheus
Chris pretty much sums up my thoughts and experience.
Just to add though: many of the anti-vaxx cranks have not walked in *my* shoes; that of a diagnosed Autistic adult that must deal with the consequences of the anti-vaccine movement. They justify this glossing-over by drawing solid lines between children, adults and Autism/Aspergers diagnoses which even Autism researchers don’t agree on. Ethics and science mean nothing to them.
Hi Orac –
To present somewhat of a dissenting view, what you might need to do is walk a year in someones shoes; not because it would teach you that raising a child with autism is difficult, but rather, you may realize that while your existing set of observations concerning the problems of pattern recognition, emotional attachment, or bad journalism are accurate, they fall short to describe the collective experiences of the people whom are sharing the journey of autism. In fact, they can begin to sound like one must believe in an amazing series of improbabilities in order to conform to what we are being told by the regulatory agencies.
If you were thrust into the autism community, you might find that when there are twenty sets of parents of autistic children in a room, at least one group will tell you that their child was speaking in full sentences the day they got the MMR, and didn’t say another word for a year, or ever.
After hearing a few times, it might occur to you that if such a dramatic, and life changing event in a child wasn’t a new phenomena, that it makes absolutely no sense that it was not until the last few years that pediatricians began to warn parents that a loss of skills was a sign for a downward developmental trajectory. For all our problems in detecting patterns where there are none, shouldn’t we have been able to detect a pattern that a loss of previously aquired speech was a problem if it had been occurring in 30% of people that were autistic for forever? Shouldn’t there be an old wives tale about the kid who was talking in full sentences, suddenly stopped one day, and went on to have a series of developmental problems?
You would also meet set after set of parents who told you that speech, OT, and behavioral therapies were going nowhere, absolutely nowhere, until the parents tried things like diet, supplements, or even chelation. It might occur to you that even though these people were spending thousands of dollars on therapists previous to starting on biomedical treatments, for some reason, they just didn’t see a pattern of improvement, until they started biomedical treatments. As someone who is not immersed in the autism community except as recipient of flames and attacks on poor science, you might be surprized to learn that a most parents who use biomedical treatments aren’t spurning more traditional therapies; and in fact, didn’t start biomedical therapies until they observed that the things their pediatricians recommended were not having a meaningful impact on thier child. It generally takes many months to get into see a DAN doctor; in the meantime, shouldn’t some parents be detecting patterns, even false ones, of improvement in their children?
Anyways, flame away!
– pD
pD said “at least one group will tell you that their child was speaking in full sentences the day they got the MMR, and didn’t say another word for a year, or ever.”
Except with recall bias and willful thinking many times we realize that is just wrong. Often times the video records shows that the delays were way before the MMR, not just right after. That is apparently what happened with the Cedillos, the video record did not jive with what they recalled, and as recently noted that the medical records of the children in Wakefield’s now discredited paper showed that many were concerns BEFORE the MMR.
The problem, pD, is you are just relying on stories you have read or heard, not the real science. There is no real connection between vaccines and autism.
By the way, I starting to walk in these shows almost a decade before Wakefield published his paper. The seizure was from an actual illness, not a vaccine.
pD,
The phenomenon you described has existed for years. Just because you willfully refuse to accept that point doesn’t make your treatise any more true.
And if the biomedical treatments you describe did work, then please, for the love of all things proper and decent, show me one study that shows they did work.
You can’t, can you. Yet I can point to a dozen studies that show that vaccines play no rule in autism.
There are so many different “autisms” that there just isn’t going to be a single cause of all, or a single solution, if any. But to date, no credible study has shown a link between vaccines and autism. So, it’s time to drop that one and look elsewhere. And yes, I understand why many parents connect their child’s vaccination to the onset of autism spectrum disorders. If I ever start my own blog I’ll write about it.
I have a child with a different severe disorder, so I do have some sense of the community. But I also believe in scientific evidence. All the anecdotal evidence is simply not finding support from research. The “collective experience” of the parents is not being borne out by scientific research. It also requires quite a series of improbabilities to say that somehow there must be some underlying truth that for some reason simply cannot be demonstrated.
As to the “old wives” tales, autism as a diagnosis is not all that old and was just about unheard of when I was a child. It’s not surprising there aren’t a lot of old wives tales about it.
pd – “you may realize that while your existing set of observations concerning the problems of pattern recognition, emotional attachment, or bad journalism are accurate, they fall short to describe the collective experiences of the people whom are sharing the journey of autism.”
Who the hell cares? I don’t want Orac scribing my journey with autism, I want him to talk about science.
Research, not Mesearch.
Are the homebrew biomed-oriented parents of autistics so damned self-centered that someone who fails to coddle them is automatically disregarded as a trustworthy source of information and analysis?
Are the homebrew biomed-oriented parents of autistics so damned self-centered that someone who fails to coddle them is automatically disregarded as a trustworthy source of information and analysis?
From what I’ve seen, often yes, and that makes me incredibly gun-shy about saying anything to them in fear that they would shut me out and never listen again. It KILLS me to hear parents talk about how science is “against” them and how if they can find just the right diet and chelation combo their child will be fine, they just know it. I had to stop going to my local autism spectrum support group because I just couldn’t handle listening to it, and every time I’d try to cautiously bring up information against it I’d get a cold shoulder and icy stares. Hell, there’s one woman in the group who has triplets, one autistic and two not, all were on the same shot schedules and environment, and she’s bought into it. Where do you even begin to dismantle what she’s built up in her head around that?
This isn’t directly related to the current post, but I just ran across a new (to me, at least) anti-vaccination argument that just completely boggled me here:
Guh!
So in other words, one child dying of a vaccine reaction is preferable to hundreds dying (and thousands sickened) by the disease.
That’s the cost-benefit ratio that Mother Nature works on. But I guess to anti-vax freaks, that’s preferable.
The relationship between Autism and treatment/services goes like this: You will not hear about the ones for whom nothing in particular ‘worked’.
If mainstream services(if they are even provided at all) do nothing, but then quackery is attempted and appears to work, there’s a cause to create organisations promoting this position.
If mainstream services(if they are even..) do appear to work, there’s a cause to create organisations promoting this position.
The ones you do not hear from are the ones who either did not need services due to very fortunate circumstances or are so passive and alone(diagnosed adults overwhelmingly belong in this catagory) that there is no cause or no forseeable way organisations which represent this position can be created, especially if what organisations do exist are drowned out by the very loud and very aggressive lobbying power to the others mentioned above.
This is how it is with Autism; outsiders only hear noise from the first two. When the MMR scare started and ever since, the LEAST likely voices you were going to hear from any source was an Autistic person or a parent with an Autistic child that saw the manufactroversy not just as nonsense but as a threat to their welfare. There’s nothing strange about the supposed consistent pattern of parents noticing skill loss like we hear in vaccine ancedotes; it’s just that the picture being presented is heavily edited and excludes a vast amount of ancedotes inconvenient to that proposed scenario. For every Autistic child alleged to have been made Autistic by a vaccine, there are at least three Autistic adults who could not possibly have had the same vaccine or set of vaccines and this is *assuming* that *every* Autistic child is the result of a vaccine.
You know, I just realized that when I read this kind of thing, or blather like passionlessDrone’s above, I actually experience a slightly less intense version of the feeling I get in the pit of my stomach when I read about famous serial killers and the way they saw the world.
The government and public health officials have agreed that a certain number of casualties and deaths as a result of being vaccinated is acceptable.
Not acceptable but inevitable. Just as using antibiotics means that a certain number of people will die of unsuspected allergies. In both cases, the number of people who die or are injured is much lower than the number who would have died if vaccines or antibiotics were not used, but there is a trade off, as there is with virtually anything in life.
Of course, when there is a clear and recognizable problem then things change: children (or adults) who have bad reactions to a given vaccine don’t get that vaccine any longer. When there is an identifiable systematic problem, the vaccine schedule changes. Examples are the delay of the MMR to reduce the chances of the (already extremely rare) SSPE or the development of the acellular pertussus vaccine. Such changes in the vaccine schedule and development of safer vaccines do not occur because someone had an anecdote that they believe, against all evidence, is meaningful but because of the very peer reviewed research that pD and others seem to hold in such contempt.
Not to defend the logic, but it’s actually not unusual for people to react differently to the idea of deaths that were allowed to happen, as opposed to deaths that were caused to happen. I’m too tired and running too late today to look up the work, but different areas in the brain apparently react to hypothetical questions in which someone is allowed to die so that others may live than react when the hypothetical involves killing someone so that others may live, even if the numbers are exactly the same. So yes, people might find it much more emotionally unpalatable to think of making choices that kill X number of people, even if not making those choices would allow 10X people to die.
Personally, I vote with preserving the largest number of children, but that’s a logical conclusion, not an emotional one. Lots of people don’t work that way.
So yes, people might find it much more emotionally unpalatable to think of making choices that kill X number of people, even if not making those choices would allow 10X people to die.
I would argue that in both cases you’re allowing X or 10X or 10^5X people to die, regardless of the method. It’s not like we’re throwing one kid into the volcano to propriate the gods. Everyone takes the same risk for the same benefit. If the risk is known to be higher for a given individual, then that individual doesn’t take the risk and accepts the risk of being unvaccinated.
And, yes, I understand that having a person die of anaphylaxis just after you give them a shot feels more like you killed them than having a person die of the disease for which you didn’t vaccinate them but ethically I’m not sure there’s any difference. To me saying “but how could we know that X would get measles if we didn’t vaccinate him/her” is sort of like driving with your eyes closed and claiming that you weren’t at fault for killing 23 pedestrians because you couldn’t see them.
Hmm…that last comment may have been a bit over emphatic. Particularly since it was responding to someone who was explaining a view that she didn’t necessarily share. The idea of letting people die is something of a trigger for me, which is why I responded so strongly. The bottom line is that I see where the feeling comes from but think that if it is a real obstacle then reframing is needed. Because otherwise more people will die.
Dianne,
I don’t disagree with you, I hope that was obvious. I’m just saying that there can be an emotional reaction to the idea of people dying because we did something that people don’t have when people die because we *didn’t* do something. As the quote says, actively pursuing goals that result in deaths can seem “cold-blooded” even when we’re actually saving lives overall, and to some extent that’s a bug in the human way of approaching these problems. I think people in the sciences get trained into relying on logic to make these assessments (and probably people who are more comfortable thinking this way wind up in the sciences in the first place), but to convince non-scientists, there may have to be a way of re-framing as you say – a way of making the right thing to do seem truly right on an emotional level as well as a logical one. Just pointing to the numbers isn’t going to work for some people.
The work I was talking about was by Joshua Greene at Harvard. Here’s his page, scroll down to the “Trolley Problem”
http://www.wjh.harvard.edu/~jgreene/
PD – Let me tell you about meeting Mr. B. I worked in my college library when I was a student. My first encounter with Mr. B was when he came up to me and told me to be sure to tell the reference librarian that you have to go through Iowa to get to Colorado. This would prove to be the most coherent thing he ever said to me. Much of my “conversations” with Mr. B consisted of me patiently listening him meander verbally until I recognized a relevent word among all the sound. I would then take him over to that part of the library and leave him to work.
Mr. B was an alumnus of my college. He had a law degree. He also had schizphrenia. There had clearly caused a reduction in his ability to communicate. But no one runs around trying to prove that schizophrenia is the result of some outside cause.
What about scientists who do have autistic children? Are the anti-vaccine crowd any more willing to listen to them? In the end, it doesn’t matter because the evidence is the same no matter who is talking about it and some people will listen to the evidence and others won’t.
catgirl said “What about scientists who do have autistic children? Are the anti-vaccine crowd any more willing to listen to them?”
No, they have shown no evidence of that.
A couple of those that the anti-vaccine crowd dislike are Dr. James Laidler (autism-watch.org/about/bio.shtml) and Dr. Michael Fitzpatrick (author of the book “Defeating Autism: A Damaging Delusion”), both of whom are fathers of autistic children. The same goes for anthropologist Roy Richard Grinker, who wrote a book about his daughter and international perceptions on autism called “Unstrange Minds.”
Another doctor who does vaccine research is Peter Hotez. See this article on him in the Washington Post:
http://www.washingtonpost.com/wp-dyn/content/article/2008/06/27/AR2008062703023_pf.html
@Terrie
You make a good point. Before autism was autism, it was known as “childhood schizophrenia” (or something along those lines). Just as someone can go thru 20-some-odd years of life “perfectly normal” and suddenly start hearing voices and acting erratically (the onset of schizophrenia), a child can be born “perfectly normal” and within two or three years develop the signs of autism. Perhaps it would help the anti-vaxers to think of autism as “childhood schizophrenia” again.
Good, we’ve identified the problem. Now how do we fix it?
“A custom loathsome to the eye, hateful to the nose, harmful to the brain, dangerous to the lungs, and in the black stinking fume thereof nearest resembling the horrible stygian smoke of the pit that is bottomless.”
–King James I of England and VI of Scotland, on tobacco
What a freakin’ joke!
http://www.huffingtonpost.com/jay-gordon/there-is-no-proof-that-ci_b_167157.html
“Follow the money… You think us parents are in this for the money? I have spent over $70,000 on my sons care the past two years in therapy, supplements and medical care. All out of my own pocket, so to say we are in this for the money is idiotic. I would do it all over again as well because I have seen dramatic improvements in him”
See, reading stuff like this is depressing. Although I’m a scientist and know what he believes is bulldust, I’m tempted to leave him alone with his dreams. If he wants to think he’s spent so much money and his son’s improved…why break his heart?
I guess by doing that I’ve fallen right into the anti-vacc brigade’s trap. Well, so be it.
Hi Animouse –
The phenomenon you described has existed for years. Just because you willfully refuse to accept that point doesn’t make your treatise any more true.
Has it? Perhaps you might explain to me why it was not until 2006 that pediatricians announced that any loss of skills or language was a reason to have your child evaluated immediately? Were we really so blind that this didn’t occur to people for the past couple of thousand years? How come it wasn’t noted that between 20 and 40% of children who went on to become diagnosed as schizophrenic (or whatever the diagnosis of the time) showed a loss of skills or language during development? Why did it take the medical community so long to come to this seemingly simple realization?
And if the biomedical treatments you describe did work, then please, for the love of all things proper and decent, show me one study that shows they did work.
Our understanding of the physiology of autism is nascent; however, we have several limited studies regarding dietary interventions that showed positive results. The one ‘gold standard’ study had horrible limitations in terms of tiny sample size, acknowledgements of children eating illegal foods, and the authors themselves noted that individuals did show improvement, but that at a group level, no improvement was noted. With a total number of children at 13, and ‘several’ children breaking the diet, it should be no surprize that group findings were a mess. From the dietary realm, what we have is more of a lack of quality studies on either end.
Following are four studies showing children with autism have differential immune responses to gliadin or casein than their undiagosed peers.
http://www.ncbi.nlm.nih.gov/pubmed/16613867?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum
http://www.ncbi.nlm.nih.gov/pubmed/15870662?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum
http://www.ncbi.nlm.nih.gov/pubmed/15526989?ordinalpos=3&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum
http://www.ncbi.nlm.nih.gov/pubmed/17974154?ordinalpos=7&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum
We also, of course, have thousands of parents who tell us exactly the same thing; my child improved immediately when we removed these items from their diet.
As for supplementation or medication, we have studies on fatty acid supplementation, B vitamins, and a growing number of trials with cholinergic modifiers and / or anti seizure drugs that have all shown positive effects.
From a clinical level, many of the supplements parents are using have been shown time and time again in experiments outside of the autism realm to improve a variety of metabolic processes identified as abnormal in autism.
Chelation, as we are all aware, has not been tested; but we do know that children with autism are more likely to have more mercury than their non diagnosed peers. We have two studies that tell us that GSTM1 polymorphisms known to increase mercury retention roughly double your risk of developing autism. We also have a study that GPX1 polymorphism, associated with increased anti oxidation capacity, is protective of receiving an autism diagnosis. These things, of course, would affect more than just mercury.
You can’t, can you. Yet I can point to a dozen studies that show that vaccines play no rule in autism.
Yes I can.
– pD
Hi Terrie –
“PD – Let me tell you about meeting Mr. B. I worked in my college library when I was a student. . . But no one runs around trying to prove that schizophrenia is the result of some outside cause. ”
That is a very nice story, thank you.
I can’t help but notice that it relies on a strawman argument, however, that I am arguing that all autism (or whatever it used to be called), must rise from a single, outside cause. I don’t make that argument here; I am completely open to the notion that there are multiple mechanisms by which a developmental trajectory like autism, or schizophrenia, or whatever, can be reached. In fact, this seems almost certain to be the case. But just because there are genetic cases doesn’t mean that there aren’t any environmental components.
Here is a story for you:
When researchers evaluate maternal exposure to organochlorines, or other pesticides they found associations with developmental delay and pervasive developmental disorders. Other researchers, found similar associations with autism. Another study found associations with neural tube defects.
http://www.ncbi.nlm.nih.gov/pubmed/17938740?ordinalpos=5&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum
http://www.ncbi.nlm.nih.gov/pubmed/18226078?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=4&log$=relatedreviews&logdbfrom=pubmed
http://www.ncbi.nlm.nih.gov/pubmed/16495467?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=1&log$=relatedarticles&logdbfrom=pubmed
This doesn’t mean that genetics can’t cause developmental disorders, ASD, or neural tube defects, does it? Should the fact that purely genetic cases of neurological deficits mean that we have nothing to learn from these studies? Should we take no policy actions because some schizophrenia is genetically based?
The lynchpin of your argument, and one made by several others here, is that we’ve always had autism, or schizophrenia, or whatever, at the same rates we are observing today; and thus, claims of rising incidence is foolish and, indeed, contempt of science.
Unfortunately, in order for this to be accurate, we need to find reasons to ignore, absolutely ignore, reams and reams of clinical studies regarding the impact of synthetic chemicals that are have become ubiquitous in our environment only in the past generation. Pesticides are just the start, we also need to ignore findings on a slew of flame retardants, plastics, and a variety of others that act as endocrine disrupters.
We also need to find increasingly exotic mechanisms by which we can explain away increases in disorders with similar immunological or metabolic profiles to autism, like asthma, type 1 diabetes, food allergies, and MS. Why should we do any of this? Because you met a guy who worked in the library who was weird?
Our evaluation of vaccines, unfortunately, is concentrated only on a single preservative, or a single vaccination. To point this out, however, somehow means that I am akin to a serial killer, or hold science in contempt. What a joke.
I appreciate your civil tone.
– pD
Spend 70k on something, and you may well resist accepting evidence that your money was thrown down a rat hole.
pD said “Chelation, as we are all aware, has not been tested; but we do know that children with autism are more likely to have more mercury than their non diagnosed peers.”
Yes, chelation has been tested, and it is not worth the risk. And no, children with autism are NOT more likely to have more mercury than any other child. Cherry picking studies is not going to change that.
What is true is that we have recently read that Mr. Champagne has paid a significant amount of money to a bunch of quacks who tortured his son. His son did development despite that torture, just as many autistic children do learn and improve.
He is angry at us for pointing out that he is a victim of a scam, and is unwilling to accept that the treatments were not justified.
I started the walk with a disabled children about twenty years ago… and I chose to read the science, and take my son to a real neurologist and real therapists (including some associated with the university autism research branch for little or no fee). I did not walk in his shoes because I took the science road, not the thorn covered road with grabby hands reaching for wallets.
Actually, I’ve always wondered if that might have been the origin of the myths about “changelings” — counterfeit children left behind by the fairies that stole the real one away in the night. If you lived in that time period and were one of the poor parents whose child regressed almost overnight to severe autism, you might think it a plausible scenario — possibly a heartening scenario — that your child was healthy and well, off with the fairies, and this wild child before you wasn’t yours.