But it works…..!
October 10th, 2007
Or does it?
Why placebos “work”.
I doubt that a week goes by that I don’t hear from some parent upset or enraged that I have “dissed” their favorite “alternative” or “biomedical” treatment for autism. Their argument usually boils down to this:
“It worked for my child!”
So, why is it that I can doubt parents’ anecdotes about how [fill in the blank] helped their child’s autism?
Let me start out by stating that I do not suspect the parents of lying, deceiving, or otherwise fabricating their story. I am confident that they are telling the truth…as they know it.
So, why would people report that a treatment improved their children’s condition if that were not so? There are a number of potential reasons:
[1] Natural history of the disorder/disability
Change is the nature of the human experience. We fluctuate in weight, height (slightly), temperature, mood, energy level, appetite, etc. This is true also for people with diseases, disabilities or disorders – possibly even more so. A person with a “common cold” will experience a rapid increase in symptoms followed by a slower improvement. Even people with chronic diseases, such as emphysema, congestive heart failure and chronic pain have “good days” and “bad days”, “good months” and “bad months”.
Children with autism are not an exception to this general rule of humanity. Like “typical” children, they have days and weeks where they struggle to learn some new skill, followed by the sudden breakthrough and the slow attainment of mastery. This is then followed, in turn, by the struggle to learn some new skill. The disability of autism may make their progress slower, but it does not abolish it entirely.
So, when a parent is trying a new “therapy” on their child, be it “biomedical” or “mainstream”, there is always the chance that they will start this treatment just before their child has that “breakthrough”. The treatment had no impact on the “breakthrough” – it would have happened regardless – but the treatment gets the “credit”.
The chance of this sort of erroneous assignment of “credit” goes up dramatically if – as is often recommended by “biomedical” promoters – the parents are trying a number of different “therapies” one after the other (or in combinations). Since many of the promoters of “biomedical” therapies advise – in apparent good faith – that it may take months or even “years” for the “therapy” to work, they have a much longer “window” in which to receive the “credit” for improvement they did not cause.
Imagine, if you will, that you are suffering from a bad “cold”. At the peak of your suffering, you take an herbal remedy offered by a co-worker. He or she advises you that it may take “a few days” for it to work. Sure enough, you are better in two days! Was the herbal remedy a miracle cure or just a placebo? Since you took the remedy at the peak of your symptoms, it was predictable that you would be feeling better in a day or two, so the herbal remedy most likely had no effect.
Picture the same scenario, except now you are treating a child with a condition that is life-long and is characterized by slowed development. And also imagine you are told that the “remedy” may take up to two years to work. Is it not possible that at some time within that two year window there might be some improvement, just based on the child getting older?
Just speaking hypothetically, mind you.
[2] Placebo response
One of the reasons that clinical drug research uses placebos as a control is that people often feel better simply because they’re taking a medication they think will make them feel better. This often goes by the misnomer “placebo effect” but, since placebos (by definition) don’t have any effect, it is better to call it the “placebo response”.
The placebo response can occur in anyone – it doesn’t have to be just in the person taking the placebo. So, it is common for parents to feel that their child is doing better even when their child is getting a placebo. I saw this happen a number of times in drug trials – including the now-famous Repligen secretin trials.
Parents were often shocked when we told them (after the study was over) that their child had been receiving the placebo. More than one insisted that we give them the composition of the placebo – they were so convinced that it had helped their child that they wanted to continue giving it. That’s right – they wanted to keep giving the placebo.
By the way, nobody should be reading this with a smug, superior attitude. I’ve seen people from all walks of life, all levels of education and intelligence, fall for the placebo response. It has nothing to do with gullibility – all you have to do is want to have it work.
[3] “Accentuate the positive, eliminate the negative…”
It is simply the very natural tendency of human beings to give higher “weight” or authority to information that “confirms” what they already believe and to give less authority or “weight” to information that contradicts their beliefs. If this is done consciously, it is called “Cherry Picking”.
Parents treating their children have several psychological “pressures” pushing them to see improvement even when there is none. First, of course, is the innate desire of every parent to see their child healthy, happy and productive. Parents want to see their children get better, develop and succeed – it’s part of being a parent. And so, they will naturally tend to “accentuate the positive, eliminate the negative…”.
In addition, there is also the very human tendency to persist in a course of action once begun. This is doubly so if the course of action is taken at some cost. This “cost” can be either monetary or emotional – such as starting an unproven “therapy” that doctors, friends and family find questionable – or both.
Once parents have decided to take the “alternative therapy” route, they often feel committed to continue, if only to prove the “doubters” (e.g. doctors, friends and family) wrong. This only serves to increase the pressures to see improvement which, as mentioned above, are already a natural part of the human condition.
This is why parental reports are always viewed with a degree of suspicion by researchers. It’s not because the researchers think that the parents are lying – it’s because good researchers know the psychological pressures involved. And that’s why a good study will include a placebo – to help balance out the natural human tendency to want to see our children be healthy and happy.
[4] Errors in diagnosis
Given the variety of educational and experience levels of the people making the “diagnosis” of autism, it is not surprising that some of these diagnoses are in error. For that matter, the “diagnosis” of autism is so broad that it is quite likely that it includes many different conditions, with very different developmental trajectories.
This is not a problem limited to autism, to be sure. I often wonder how many of the “miraculous” cures attributed to “alternative” cancer therapies are due to an error in diagnosis.
At any rate, when parents of a child with a mis-diagnosis of autism try a therapy – “alternative” or “mainstream” – and their child improves faster than autistic children are “supposed” to improve (see: The Myth of Developmental Stasis), they attribute the “recovery” (or “cure”) to that therapy.
As alluded to above, there is a sub-category of “errors in diagnosis” that would be better named “errors in prognosis”. At the risk of sounding repetitive, there is an urban myth currently in circulation that children with autism do not develop without some sort of “therapy”, preferably “alternative”.
To be fair, there are also a number of medical practitioners who – to put it kindly – are “reading from an older edition”. They have not yet been brought up-to-date about the “New Autism” and are still telling parents that their autistic child will never talk, never make friends and will need to be institutionalized. They are just as wrong as those “lay experts” who say that autistic children will never talk, never make friends and will need to be institutionalized unless they receive chelation, HBOT, vitamin B6, methyl B12, …etc.
Summary:
There are a number of reasons why parents are not the best people to evaluate whether or not their children are responding to therapies. For that matter, the practitioners who recommend or administer the therapies are also not good, neutral observers.
Humans naturally try to find patterns in the world around them – even when there are no patterns. They also tend to give more credence to information that confirms what they already believe. This is not lying and it is not a moral failing – it is human nature.
The scientific methods of placebo and blinded observers (observers who do not know if the subject they are evaluating has received the treatment or placebo) were developed to keep us from fooling ourselves.
Prometheus
Filed under: Autism Science, Autism Treatments, Critical Thinking
October 10th, 2007 at 4:02 pm
The thing is, presumably any doctor engaged in biomedical treatments for autism would, I assume, be highly educated in the matters that you’ve outlined. Therefore, how do you explain these doctors reliance on this anecdotal evidence as validation for the therapies that they are administering? If they were really trying to help as many children as possible, wouldn’t they be pushing for proper clinical trials so that these alternative treatments could be proven, and thus embraced by the mainstream and find their way into the treatment plans of many more families as a result? Does the fact that they seem to actually prefer this anecdotal evidence as “proof” (the web pages of many of these doctors are full of anecdotes and testimonials) say something about their integrity?
I just can’t believe that there are that many unethical doctors out there, but I cannot get beyond this reliance on anecdotal evidence, testimonials, and PR style “research”. Then again, all I have to do is remind myself all the horrid boob jobs and hair transplants that are walking around out there, and it remind me that education (or profession) and ethics do not neccessarily coincide.
October 10th, 2007 at 5:29 pm
[Hate-filled off-topic rant deleted]
John, you can consider yourself in a permanent time-out
Prometheus
October 10th, 2007 at 5:36 pm
More than one insisted that we give them the composition of the placebo
That’s interesting. I’ve referred Phil Commander to this post, since we were discussing this very thing.
October 10th, 2007 at 5:54 pm
Ah, another one to put away in the vault.
Thanks again for your concise and accurate writing.
Joe
October 10th, 2007 at 6:29 pm
Brook Trout,
Doctors have been taught about the “placebo response” and the need for blinded observers. However, this may not alter their actions.
Just as every modern motorist knows that they shouldn’t speed or drive drunk (and especially not both!), yet every day there are people doing both.
I may be in the minority, but I believe that “anecdote-based” practitioners are NOT consciously trying to defraud their patients. The have - for reasons they find sufficient - decided to ignore what they have been taught in order to believe in things that are not supported by data.
I suspect that many of these practitioners have convinced themselves that they are far too intelligent to be “fooled” by the things I have posted above.
But they’re wrong.
They’re human, too (even if they forget that at times).
Prometheus
October 10th, 2007 at 7:01 pm
you gentlemen seemed well intentioned enough but the facts remain.
Fact.
I was told that MB12 worked in specific areas of development. In other words I would see certain type of results.
Fact.
In the first week of MB12 shots I saw dramatic improvement in those EXAXCT areas I was told I would see improvement.
Fact.
After the first month the results were miraculous.
Fact.
I was told that the progress rarely goes on for more than six months.
Fact.
By the sixth month I stopped because our progress stopped in the fouth month.
Now I know you are all saying that these are not facts they are my opinions and anecdotal.
But my story is the same as scores of others who have done MB12 shots.
Many see no results though.
I’m sure you will say this certainly isn’t science but I refuse to believe in science if it blinds me to what is right in front of me like it has to all of you.
I do not mean to offend, it is simply a shame that you are telling parents not to pursue medical treatments that their children may really need.
You are not doctors and have not examined these children so to tell parents NOT to seek medical attention is in itself a Medical Opinion.
I tell parents to look into these interventions and talk to doctors and other parents and make the decisions that are best for them and their children. I show them videos of my results.
You tell them NOT to seek medical attention.
Very dangerous business you guys are involved in.
Phil
October 10th, 2007 at 7:42 pm
Thanks - I agree. I also do not think that they are all intentionally defrauding parents. Heck, what do I know, they might actually be helping. It does seem suspicious, the lack of what’s considered proper medical evidence for these treatments that they keep harping on, however, and it’s what keeps me away from their practices, though I do admit being swayed by the anecdotes (not from the internet - from people I know in real life who swear by this stuff - it’s hard to ignore).
I wonder if there might be some sort of a ‘rock star’ or ‘professional athelete’ psychological effect, too - these doctors just over and over again get told that they are performing miracles and rescuing children and receive, I’m sure, a lot of adoration and high levels of income from these treatments.
Being told again and again how brave and good and effective you are must affect pyschology and perhaps skew their perspective. Kind of the opposite of the intellegent, competent woman being told over and over again that she’s stupid, worthless, etc. by her no-good husband/boyfriend - eventually, they believe it. It probably works in reverse, too. Look at Michael Vick - people like that - constant adoration and being surrounded by sychophants must alter one’s perception of reality, over time.
October 11th, 2007 at 12:14 am
I second what Club 166 said. You do have a way with words, Prometheus.
October 11th, 2007 at 4:41 am
I was listening to a lecture out of UC Berkeley on a podcast (available on iTunes). The topic was public health. The professor was saying that one problem (related to the placebo response) with doing studies with medications is that there is a default assumption (I can’t remember what he called it, now) that whatever is newer IS better. So a new drug is bound to be better than the old treatment, just because it’s new. He said that even doctors tended to fall for this.
It was fascinating to me, because we see it in autism wingnuttery all the time, and in healthfraud wingnuttery all the time, too. (The context of the professor’s remarks was about FDA approved drug trials, and it’s a problem their too, obviously.)
In “biomed” sometimes the “new” thing is just a recycled “old thing” but it’s been “out” so long that now it’s seems new and it’s back “in”. Like with Jenny McCarthy and the “oh, autism is all about yeast!” thing.
Secretin’s been out long enough, maybe it will make a come-back. It’s not like the quacks are afraid of the parents doing a pubmed search. The “Brave Maverick Doctors” will always have a few suckers in line who won’t question the recommendations and promises, no matter how vague and improbable they are.
October 11th, 2007 at 9:01 am
Hi Promotheus -
What about when it isn’t just the parents that notice, but therapists and/or teachers?
My son’t ABILLS worksheek shows sudden and unmistabkable spikes when we started chelating him. For six months he shows absolutely no skills in several categories; within a month of chelating, he begain steadily gaining skills across four or more classifications. The nice thing for us here is not only were the therapists blinded to the start of therapy, but they are all about the data. There is no ‘accentuate the positive, eliminate the negative’ possible for the ABA therapists; they tracked zero skills, five days a week, for at least six months before we started chelating. Suddenly, he begins gaining skills at the same time my wife and I notice gains. It could be a coincidence, but I tend not to believe in them; especially when what we (and the therapists) saw, was predicted.
As far as the placebo response, this cannot account for differences in labs taken before and after specific treatments are undertaken. In our case, at our first appointment with a DAN! our son had a bowel movement, and the doctor immediately said, ‘Yeast, this kid has yeast’. We took a urinte sample and had it measured for yeast metabolites, which were quite high. We applied anti fungals. It appeared to us that his stools improved and aggression, and especially self injury subsided nearly immediately (after a quite spectacular round of die off with associated rashses). Subsequent lab tests for yeast metabolites came back negative. Once again, improvement in stools and aggression, and especially a period of intense irritability was predicted. Again, it could have been a case of ‘natural history of the disoder’; perhaps my son was already going to go from banging his head forty times a day to once a week in the weeks after we started Nystatin. But what good reason do I have to believe this might be the case? And if it was, the fact that his yeast metabolites decreased at the same time, makes the likelyhood of a coincidence much, much lower, does it not?
My point is, there are many areas of biomedical treatment that can be tested for before and after treatment to assess if particular phsyiological condition is being affected. Of course, testing for yeast or other anamolies is not soley the domain of DAN doctors; but the fact is most regular pediatricians are not going to tell you to check your autistic child for things like abnormal vitamin and mineral levels, yeast metabolites, or bacteria levels.
No doubt you get your share of rant emails, but the picture you paint of people trying stuff out at random and associating gains with their latest try is not always accurate of how the biomedical community operates.
Take care!
- pD
October 11th, 2007 at 11:39 am
Mr. Commander,
You make the all-too-common mistake of assuming that, because I tell people that there is no data to support these treatments, that I am asserting that they do not work.
On the contrary, some of these treatments (apart from the ones already proven to NOT work), may someday be shown to work (maybe).
It is ALSO incorrect to assert that I am telling people to NOT get medical attention. That seems to be a “straw man” of your own making, since I cannot find it anywhere in my writings.
I DO say (again) that these therapies have not been adequately tested and the “data” supporting them are purely anecdotal. And, as must be often repeated, data is not the plural of anecdote.
As I have stated - repeatedly - I am willing to have my mind changed. I would be perfectly willing - given proper data - to write on this very blog that [fill in the blank] treatment is effective for autism.
So many people tell me that these treatments are “working”, yet nobody can give me the simplest bit of data to support their claims.
I’ll make it simple. Just provide the raw, unblinded efficacy of - for example - methyl B12. I won’t even ask you to show that it’s better than un-methylated B12.
All you need to do is go to a doctor who uses methyl B12 to treat autism and ask them to provide the total number of children treated with methyl B12 and the number who improved. That would be a great step toward bringing this treatment out of the shadows and into the light.
I know that it is much more satisfying to attack me for advocating that people not seek medical attention or to claim that I am “standing in parent’s way”, but as satisfying and righteous-indignation-generating as that might be, it has one simple flaw.
It’s not true.
Again, I emphasize that I am NOT saying that these treatments DON’T work (except for those already shown to not work), but that they haven’t been SHOWN to work. I’m not standing in any parent’s way of using “biomedical” therapies for autism - in fact, I’m sitting at my desk, far from the office of any DAN! doctor.
What I AM telling people is that these treatments are not supported by data. I’ve found that THIS is a point that is often left unsaid by parent-advocates (such as yourself) and DAN! doctors.
Passionless Drone,
See above.
Prometheus
October 11th, 2007 at 12:02 pm
Good show. From my own experience I can attest to the attraction of the parent story. Unfortunately, I haven’t seen a single miracle cure claim stand up to scrutiny so I’ve chalked it up to parents desiring something so bad that they “see” what they want to see. It’s a normal thing to do.
October 11th, 2007 at 12:03 pm
Phil also told me that I’m telling parents not to seek medical attention. I’ve rarely encountered such a dishonest misrepresentation of people’s statements.
If anything, Phil is the one giving out medical advise in his videos. For someone who has trouble grasping simple scientific concepts such as the placebo response or biased perception, I do wonder about his qualifications.
October 11th, 2007 at 12:58 pm
Hi Promotheus -
“You make the all-too-common mistake of assuming that, because I tell people that there is no data to support these treatments, that I am asserting that they do not work. ”
I made no such assumption, but merely showed ways in which the four criteria you have provided as why would people report that a treatment improved their children’s condition when it really was not responsible can be discarded with a little work.
Before and after lab tests showing changes in values allows us to safely disregard the notion that the improvement was the result of ‘Natural history of the disorder/disability’, does it not?
The fact that ABA therapists who are blinded to treatment show improvements at the same time treatment is started allows us to discard the notion that said improvement is the result of placebo, does it not?
Unless they have decided to jeapordize their careers, how can we argue that suddenly ABA therapists have decided to “Accentuate the positive, eliminate the negative…”?
My son has been given the diagnosis by a series of individuals from a variety of different organizations. If he was diagnosed in error, everyone is making the same error again and again.
I made none of the assertions or assumptions you defend yourself from in the post; presumably in response to PhilCommander.
As far as methyl-b12, there is one very small study showing improvement. It suffers from small sample size, and likely other flaws. It does seem to fit your criteria when you say this, though:
“I’ll make it simple. Just provide the raw, unblinded efficacy of - for example - methyl B12. I won’t even ask you to show that it’s better than un-methylated B12. ”
http://sciencelinks.jp/j-east/article/200515/000020051505A0451312.php
Take care!
- pD
October 11th, 2007 at 3:05 pm
Passionless Drone,
The study you linked to:
NAKANO KAZUTOSHI, NODA NAOKO, TACHIKAWA EMIKO, URANO MAN, TAKAZAWA MIYUKI, NAKAYAMA TOMOHIRO, SASAKI KAORI, OSAWA MAKIKO. A Preliminary Study of Methylcobalamin Therapy in Autism. Journal of Tokyo Women’s Medical University. 75 (3/4):64-69 (2005).
This is a preliminary study using thirteen (13) autistic children ranging in age from 2 years, 3 months to 18 years. They were treated with methyl B12 for between 6 and 25 months (!) and scored using the CARS test.
This was an open-label test (all evaluators knew that all 13 children were receiving methyl B12) and the children were compared to their own score (done 6 to 25 months previously).
Unfortunately, Journal of Tokyo Women’s Medical University is not available in my university library, but it would appear from the abstract (it’s also not listed in Medline or Web of Science) that this study does not provide the information I requested.
While the study DOES provide the number treated (13), there is no indication (apart from the mean and standard deviation) HOW MANY improved.
I might also point out that this study suffers from the flaw of assuming that, in the absence of therapy, there would be NO change in the CARS score. This has NOT been born out in other studies.
But, I DO appreciate the effort.
Prometheus
October 11th, 2007 at 3:05 pm
I believe the UC Davis MIND study that started out as a sort of, almost double blinded stage one trial concluded that it wasn’t worth to move on to stage two trial because there was no evidence that the B12 had done ANYTHING. There was an attempt to say that one child made a big leap, but in autism in any group ONE kid can make a big leap. Some parents on the placebo arm of the study also saw improvements. If they had seen something convincing they’d be moving on the the stage two trial with more kids, but it looks like they have let the study die without saying so. There are known possible dangers in giving high methylating vitamins. There’s no reason to give this methyl B12 by injection (except that it amplifies the placebo response in the parents, they become more invested in the outcome, injectibles are seen as more effective than pills and Neubrander exploits this).
Phil and PD are excellent examples of the inability to get perspective on the situation, they have religious like faith in “biomed” and are made uncomfortable by anyone questioning biomed. They go straight to insults and pouting if anyone questions their dearly held belief system. They refuse to acknowlege placebo effect by proxy and the fact that autistic kids randomly or at the encouragement of their parents and teachers make huge leaps forward in development (as do normal kids.) Then they can’t cope with the idea that they shouldn’t be giving out medical advice to strangers on the internet, they get absolutely high on the idea that “they too are smart, just like the doctors!!!”.
October 11th, 2007 at 3:45 pm
http://beta.bordersstores.com/online/store/ArticleView_iamamerica
I just read Stephen Colbert’s speech at the White House Correspondents dinner.
For some reason the thinking it parodies it put me in mind of Phil “Commander” and pDrone and JB Handley and Jenny McCarthy who got her PhD from “googling” and her fame from taking off her clothes and cavorting alone or with someone, in front of a camera, or not.
“Excerpt
I Am America (And So Can You!)
By Stephen Colbert
White House Correspondents’ Dinner Speech
…
Mark Smith, ladies and gentlemen of the press corps, Madame First Lady, Mr. President, my name is Stephen Colbert and tonight it is my privilege to celebrate this president. We’re not so different, he and I. We get it. We’re not brainiacs on the nerd patrol. We’re not members of the factinista. We go straight from the gut, right sir? That’s where the truth lies, right down here in the gut. Do you know you have more nerve endings in your gut than you have in your head? You can look it up. I know some of you are going to say, “I did look it up, and that’s not true.” That’s ’cause you looked it up in a book.
Next time, look it up in your gut. I did. My gut tells me that’s how our nervous system works. Every night on my show, The Colbert Report, I speak straight from the gut, OK? I give people the truth, unfiltered by rational argument. I call it the “No Fact Zone.” FOX News, I hold a copyright on that term.
I’m a simple man with a simple mind. I hold a simple set of beliefs that I live by. Number one, I believe in America. I believe it exists. My gut tells me I live there. I feel that it extends from the Atlantic to the Pacific, and I strongly believe it has 50 states. And I cannot wait to see how the Washington Post spins that one tomorrow. I believe in democracy. I believe democracy is our greatest export. At least until China figures out a way to stamp it out of plastic for three cents a unit.
…
Ladies and gentlemen, I believe it’s yogurt. But I refuse to believe it’s not butter. Most of all, I believe in this president.
Now, I know there are some polls out there saying that this man has a 32% approval rating. But guys like us, we don’t pay attention to the polls. We know that polls are just a collection of statistics that reflect what people are thinking in “reality.” And reality has a well-known liberal bias.
So, Mr. President, please, pay no attention to the people who say the glass is half full. 32% means the glass—it’s important to set up your jokes properly, sir. Sir, pay no attention to the people who say the glass is half empty, because 32% means it’s 2/3 empty. There’s still some liquid in that glass is my point, but I wouldn’t drink it. The last third is usually backwash.
…
I stand by this man. I stand by this man because he stands for things. Not only for things, he stands on things. Things like aircraft carriers and rubble and recently flooded city squares. And that sends a strong message: that no matter what happens to America, she will always rebound—with the most powerfully staged photo ops in the world.
…
And I just like the guy. He’s a good Joe. Obviously loves his wife, calls her his better half. And polls show America agrees. She’s a true lady and a wonderful woman. But I just have one beef, ma’am. I’m sorry, but this reading initiative. I’m sorry—I’ve never been a fan of books. I don’t trust them. They’re all fact, no heart. I mean, they’re elitist, telling us what is or isn’t true, or what did or didn’t happen. Who’s Britannica to tell me the Panama Canal was built in 1914? If I want to say it was built in 1941, that’s my right as an American! I’m with the President—let history decide what did or did not happen.
The greatest thing about this man is he’s steady. You know where he stands. He believes the same thing Wednesday that he believed on Monday, no matter what happened Tuesday. Events can change; this man’s beliefs never will.
As excited as I am to be here with the President, I am appalled to be surrounded by the liberal media that is destroying America, with the exception of FOX News. FOX News gives you both sides of every story: the President’s side and the Vice President’s side.
But the rest of you, what are you thinking, reporting on NSA wiretapping or secret prisons in Eastern Europe? Those things are secret for a very important reason: they’re super-depressing. And if that’s your goal, well, misery accomplished.
…
I was vying for the job myself. I think I would have made a fabulous press secretary. I have nothing but contempt for these people. I know how to handle these clowns.
In fact, sir, I brought along an audition tape, and with your indulgence, I’d like to at least give it a shot. So, ladies and gentlemen, my press conference.
…”
October 11th, 2007 at 3:51 pm
Is it possible that B-12 has a stimulant/euphoric effect that makes the kid perk up and become more interactive, behave better, more social, etc - kind of like the two cups of coffee I have to drink each morning so that I can face the day? I asked this question before, and someone posted some studies or anecdotes or something indicating that B-12 may affect mood in a positive way or something.
The tutor that works with my children works at a private autism school. She says that B-12, in her observation, actually does have an effect, but the effect is immediate and it is temporary. She says she actually has a student who requests the B-12 shots when he’s not feeling well. She says that the kids become more talkative, social, etc - but that they talk more, not neccessarily better.
The way she describes it, it almost does sound like the effect that these things have are just a short lives mood enhancing affect more than anything, and if so, it doesn’t really sound like a treatment for autism, any more than Ritalin or coffee is.
How’s the stuff supposed to work? What positive effects is it supposed to have - and, are these general effects are effects that target the symptoms of autism specifically?
October 11th, 2007 at 4:11 pm
The interesting part about pD’s and, say, John Best’s anecdotes, is not that the children improved with the treatment. It’s that the kids were supposedly not making gains at all before the treatment. That’s pretty unusual. I suppose it can happen. At least in John’s case it seems ridiculous; 7 years with no gains whatsoever. I don’t think anyone has ever observed such a phenomenon. In pD’s case I guess it’s harder to explain since he claims the analysts were taking measures.
October 11th, 2007 at 4:12 pm
Hi Ms Clark -
“Phil and PD are excellent examples of the inability to get perspective on the situation, they have religious like faith in “biomed” and are made uncomfortable by anyone questioning biomed.”
LOL! LOL! If you are who I think you are, this statement is coming from someone who censored me in the past. As such, I’ll take the notion of being called ‘uncomfortable with questioning’ something with a huge grain of salt. In any case, we took my son off b12 shots; we simply didn’t see the results some others do. My belief in biomed was unshaken. Many of us realize that with a heterogeneous set of physiological differences in autism, things that work for some kids won’t work for others. Some people may not feel the same.
On a slightly off topic note, in my opinion, the heterogenous nature of physiological differences in autism can lead to some big problems when crafting a study on treatments that only uses the label of autism as criteria for entry as a participant.
“They go straight to insults and pouting if anyone questions their dearly held belief system”
I’d be very, very interested in seeing if you could provide a quote wherein I insulted anyone. Or pouted, for that matter. I will concede to any accusations of sarcasm. Did I insult anyone, or pout in this thread? Perhaps I should make some broad, insulting generalizations about you?
“They refuse to acknowlege placebo effect by proxy and the fact that autistic kids randomly or at the encouragement of their parents and teachers make huge leaps forward in development (as do normal kids.) ”
I believe that I addressed the fact that in many instances with biomedical treatments, you can control for the random changes (i.e., Natural history of the disorder/disability) by evaluating the results of lab tests before and after a treatment. For encouragement, we encouraged my son to make progress every day, as do his therapists. Even with your history of creating generalizations about me, I doubt you’ll stoop so low as to accuse me of not encouraging my son to progress until we started treating him biomedically. (?)
As far as placebo effect by proxy, it seems to be a term you are quite endeared with, but very few others. How do you propose that my son’s therapists, who were unaware of the treatment, were affected?
“Then they can’t cope with the idea that they shouldn’t be giving out medical advice to strangers on the internet, they get absolutely high on the idea that “they too are smart, just like the doctors!!!”.”
LOL! You are the one practicing psychoanalysis here, not me. ROFL!
Take care!
- pD
We stopped giving out son B12 shots becasue we didn’t see the results.
October 11th, 2007 at 4:16 pm
Well, Prometheus, once again you’re wrong.
Biomed does work.
My son had severe deficits in language, behavior, and socializing. Once he was treated he has shown steady improvement, to where he is mainstreamed for many classes. What was his treatment, you ask?
He was vaccinated.
Don’t question my results. My child is my science!!
October 11th, 2007 at 10:55 pm
Dear Prometheus:
First, thank you again for another excellent and clearly presented article, and also for responding in language that laypersons can understand to the various comments. I have been recommending your site to parents of ASD children, and have heard several favorable comments about it. A research scientist who takes the time to patiently explain what is known, what is not known, and the limits of current scientific understanding in non-technical language is very much appreciated (and too rare).
Second, a point on the placebo effect that isn’t directly discussed above is the fact that whenever a new “treatment” [I'm putting that in quotes to include educational programs, therapies, other services that may be provided pursuant to an IEP, and similar attempts to help, although they do not qualify as treatments as you use the term] is begun, there is also likely more one -on-one interaction with the ASD child. The most successful educational programs for ASD students are based on intensive, one-on-one programs. Unlike what some of the commentators appear to imply, the situation does not remain the same, as an increase in the one-on-one interaction may be an important factor in any improvement - whether or not the treatment actually provides any benefit.
Third, and highly related, is that various types of Self-Fulfilling Prophesies likely are coming into play. Not only do parents and providers expect to see improvements, but also many ASD persons are very perceptive. They likely also understand that there should be improvements, and so may work harder to fulfill those expectations (their own, and those of their parents and providers). This may also be an important factor.
Finally, I fully agree with your skepticism of anecdotal evidence. Any attorney with even the most limited trial experience learns that “eye witness testimony” is both the most dramatic and least reliable type of evidence. We see what we see, and not infrequently see what we want to see. Memories are not perfect, and influenced by many factors. Still, to convince a jury, some sort of Perry Mason Moment is needed — the witness recalling with great emotion what he/she saw, heard, smelled, and felt. Of course, with the type of anecdotal evidence offered to you, you don’t even have the basic assurance that the person providing it has personal knowledge of the supposed events, and the person relating it isn’t subject to cross-examination (which can be quite brutal) or being faced with contradictory evidence presented by others. Your skepticism is warranted. However sincerely believed, most anecdotal evidence is untrustworthy. While this usually isn’t meant either as an insult or to question the relator’s honesty or sincerity, the relator not infrequently takes it as an insult or as questioning his/her honesty or sincerity.
I appreciate that you put up with quite a few unfair personal attacks. However, there are many who are learning much of value from you. Thank you for your efforts and patience.
October 12th, 2007 at 4:22 am
So Passionless drone shows exactly that s/he is totally clueless about the meaning of placebo effect by proxy. Thanks for the demonstration that shows where your knowlege level is: abysmal.
If there’s no placebo effect by proxy why are parents/kids/teachers/experimenters all blinded from the treatment arm in medical treatments in autism???
What lab tests did you use? If you have a lab test that shows physiological change in your kid, a true known improvement, say, for instance, an increase in hematocrit level in a kid who was anemic… fine, wonderful. Goody for you! Great for your kid!
Now, do you have a double blinded study that showed it had ANY effect in the least on how any kid’s brain is WIRED? No? How about a true measurement in symptoms of autism and intellectual development? No? That’s what I thought.
Without them, your anecdote is worthless. If you want to make a point that taking a kid off of gluten when gluten makes him sick, makes the kid feel better, go for it. I’m totally for putting kids who are intolerant of gluten or allergic to it on a gluten free diet. I’m for putting kids who are allergic to peanuts on a peanut free diet, too!
But, your demonstration of understanding of the rat PPA study was just **pathetic**, and yet, you have the unmitigated nerve to try to pretend like you have something vaguely like a grasp on science?
Sorry.
Ain’t gonna fly.
You have already shown that you don’t get it, but that you gullibly swallow what’s going around on the web as “truth”. Don’t feel too bad, you have plenty of company. The number of people utterly clueless about science, and the psychology of flim-flammery, who also have Internet access is just incredible.
Go take some classes in biochemistry, physiology, study design, research ethics, and human brain development, then you may be able to understand what you think you understand currently.
October 12th, 2007 at 11:10 am
Hi Joseph -
“The interesting part about pD’s and, say, John Best’s anecdotes, is not that the children improved with the treatment. It’s that the kids were supposedly not making gains at all before the treatment. That’s pretty unusual. I suppose it can happen. At least in John’s case it seems ridiculous; 7 years with no gains whatsoever. I don’t think anyone has ever observed such a phenomenon. In pD’s case I guess it’s harder to explain since he claims the analysts were taking measures.”
You are taking what you want to read from my postings, not what was there.
Development is a big word, and encompasses a lot. Taking specific lab measurements before and after treatments is a lot different than just saying, ‘my son’s development is improving. It is a fine grained before and after evaluation of specific parameters.
Evaluation of ABILLS score sheets is similar; it isn’t ‘is my son more developed?’, but rather, has my son moved from B2 to B3? I’m not sure if you are familiar with ABA, but it is a precise tracking mechanism of very small steps; especially when you start at near the bottom of every category. There is a big, BIG difference between saying ‘my son isn’t developing at all’ (which I did not do) versus saying, ‘my son hasn’t learned to tap his stomach when I do, even though I’ve modelled the behavior for him ten times a day, five days a week, for four months, and I have data for each one of those days to prove it.’
What I find interesting is that no one has bothered to address my ideas on how the errors Promotheus describes can be overcome in some situations. I have been referred to a list of assertions and assumptions I have not made, I have received a two bit psychiatric evaluation, and I have had inaccurate summaries of my statements analyzed. But thus far, no one has explained why evaluating lab results might still allow me to experience placebo based error, or how they could be the result of the nature of development. No one has explained how or why ABA therapists would be subjected to accentuating the positive. No one has explained how ABA therapists are experiencing placebo effect by proxy when they were blind to treatment.
I am perfectly willing to admit I may still be subject to the errors described here; but for whatever reason, no one has decided to try to address my thoughts on how to avoid them. Go figure.
Take care!
- pD
October 12th, 2007 at 2:51 pm
“What I find interesting is that no one has bothered to address my ideas on how the errors Promotheus describes can be overcome in some situations.”
Check out Interverbal’s latest post. While you can try to do something about it, there’s just no perfect replacement for a double-blind placebo-controlled study.
You say the analysts were blinded, but you were not, and I assume you and your wife did interact with your child. Coincidence also cannot be ruled out. I can see why coincidence doesn’t seem plausible to you, as an observer, but to the rest of us, it’s no big deal. To take an example, I don’t expect to ever win the lottery, but I expect that there are many people out there who have won the lottery. I wouldn’t be surprised to meet one.
And even in a DBPC study you could have coincidence (5% chance that the results are outside the 95% CI). That’s why replication is important.
October 14th, 2007 at 9:09 am
Hi Joseph -
“Check out Interverbal’s latest post. While you can try to do something about it, there’s just no perfect replacement for a double-blind placebo-controlled study. ”
I do not believe at any point I said that the strategies I outlined provided a perfect replacement for anything; merely, mechanisms by which the likelyhood of encountering these types of errors could be mitigated. If I was unclear, I apologize.
“Coincidence also cannot be ruled out. I can see why coincidence doesn’t seem plausible to you, as an observer, but to the rest of us, it’s no big deal. To take an example, I don’t expect to ever win the lottery, but I expect that there are many people out there who have won the lottery. I wouldn’t be surprised to meet one.”
For someone who is so big on science, you sure don’t seem bothered by jumping head first into hyperbole when it suits you! No doubt, if I were to say something like: ‘mercury is the second most dangerous substance on the planet, and it hits my son’s infant brain like a freight train’, you would take me to task. But when you want to tell me that I might be experiencing a coincidence along the lines of the one in thirteen million it takes to win the lottery, I’m supposed to see a correlation, and indeed, sound reasoning. LOL!
What’s more, if it is a coincidence, it is a coincidence that was predicted. If I told you I was going to win the lottery next Saturday by playing 1,22,44,58, and 23, and then I did; would you still think it was a coincidence? What’s more, if I remember correctly, it was on your site that the 74% CAM rate was discussed (can’t remember, but it was definitely an autism hub site); how many of these parents do you propose are experiencing the same lottery odds style of coincidence?
Take care!
- pD
October 14th, 2007 at 2:56 pm
pD,
With some studies showing that up to 19% of children diagnosed with autism will spontaneously “move off the spectrum”, I would say that the odds of having that happen at the same time as an intervention is tried are pretty high. Much better odds than the lottery.
(Kleinman JM, Ventola PE, Pandey J, Verbalis AD, Barton M, Hodgson S, Green J, Dumont-Mathieu T, Robins DL, Fein D. Diagnostic Stability in Very Young Children with Autism Spectrum Disorders. J Autism Dev Disord. 2007 Oct 9)
In your case, the improvement happened “as predicted” - how about the people who received the same prediction but didn’t get the improvement?
In a future posting, I will discuss how a few “successes” can overshadow the fact that the majority of people don’t get what was predicted.
In addition, if the prediction was (as I have often heard), “Your child will get better in the next two to three months” (or “two to three years), the “window” for coincidence is exceptionally wide.
The more “alternative” treatments that are tried and the more time we are told to wait for results, the greater the chance of a coincidence being mistaken for an effect.
Prometheus
January 23rd, 2008 at 3:38 pm
I personally feel that autism is caused by so many different things that finding a treatment isn’t even a valid goal for all autistics. Now if you divide the autistics into sub groups based on causation and address their particular needs that is where you will show progress. For me milk free diet helps, for my son gfcf works. I discovered this quite by accident trying to treat my infant daughter’s reflux. I was breastfeeding her and she had terrible reflux and her GI dr recommended that I eliminate milk from my diet to see if it helped her. It did, she went from throwing up 10+ times per day to throwing up 2-3 times per day. At the same time I put my son(pre diagnosis) on my own milk to see if his excema would clear up. My life long excema went away and so did his, but I also noticed that I felt so much better and my sensory issues were much more controllable and my mood was much more even and my need to stim was quite reduced. My son began to make some eye contact and interact with me and his therapists and stim less. Although he was not dx and I had no idea about the gluten free casein free diet at the time, I did have him in early intervention with speech and OT. I then started looking into behavior and diet and found the info on gfcf and autism which prompted me to see a neurologist to ask about autism and he was diagnosed. And the rest is history. I never expected that milk could cause that much difference, but it did. Was it the placebo effect or did he just spontaneously improve and diet had nothing to do with it? I can’t be for certain, but every time I have challenged my theory it proves itself. I purposely give him something with milk in it in hopes that he has outgrown his sensitivities and his teacher asks me what is going on without me having told her. I hope someone can find a way to study this stuff so we aren’t left guessing as to what might help.
January 24th, 2008 at 2:25 pm
Jenny,
“I hope someone can find a way to study this stuff so we aren’t left guessing as to what might help.”
I’ve talked with some of the people who would be my first choice to study “this stuff” (i.e. unproven autism “cures”) and their response was pretty consistent.
Having seen the underwheming response to the thorough debunking of Secretin as a cure for autism - many of the “top DAN! practitioners” still use Secretin - they aren’t interested in wasting their time on studies that won’t be used.
In short, it does nobody any good to agitate for “studies” if they don’t intend to act on the results. If people are convinced that milk-free diet, GFCF diet, chelation or whatever have “cured”/”recovered” their child, there is little point in doing a study that might not support their “belief”.
I have to admit, I’m not to encouraged by what I see. “Stories” about “recovered children” get a lot more traction in the general public that solid research studies that show no difference between the “cure” and placebo.
I fear that we are reaching the point where the propaganda of “Big Autism” (e.g. Autism Speaks, ASA, NAA, SafeMinds, etc.) is drowning out any consideration of the data, or even any discussion that doesn’t follow the “received wisdom” of starlets and fringe scientists.
I’m afraid, Jenny, that the “stories of hope” will always trump the “data of reality”, at least in the public forums.
Prometheus
April 28th, 2008 at 2:05 pm
[...] a syndrome of developmental delay, not developmental stasis, which is why randomized studies with a placebo-control group are so critical. Particularly telling is Dr. Buttar’s statement that he “doesn’t [...]