How they do the voodoo that they do so well - Part 1
September 10th, 2008
You’ve probably heard the story. A child is diagnosed with autism and the desperate (yes, I said “desperate”) parents search for answers. The “mainstream” doctors tell them that there is little that they can do (note: ”mainstream” doctors almost never say, “There’s nothing that can be done.”). Not satisfied with that answer (and what parent would be satisfied?), the parents try “alternative” practitioners.
And sure enough, the “alternative” practitioner has just the answers the parents are looking for. He or she can help them “recover” their child.
Or can they?
Over the years, I’ve shown how many of the “therapies” that claim to “cure” or “recover” autistic children haven’t been shown to work. But how do the practitioners keep the parents “on the hook”, even when the treatments aren’t working? That’s the topic of today’s lecture.
Before I get started, I need to make one thing perfectly clear. Despite being a hard-bitten cynic, I am convinced that most of the “alternative” practitioners truly believe that what they are doing is helping their patients. There are, of course, a minority that are consciously trying to deceive their patients (or their parents), but I believe that the majority are convinced that their treatments actually work.
Once again, being honest is no protection against being wrong.
So, with that disclaimer, what are some of the techniques that the “alternative” practitioners use to keep parents satisfied even when the treatments don’t work?
[Note: the same techniques are used by most "alternative" practitioners, but I will approach them from the perspective of the parents of an autistic child.]
Opening gambits:
I am the one:
Excessive humility is not a failing among most “alternative” practitioners. Most are more than willing to tell you how their diagnostic and treatment techniques are far superior to those of anyone else. They are also usually willing discuss the failings of their colleagues – at least, those that are “mainstream” physicians – at great length. And the parents, having heard the cautious and tentative words of “mainstream” doctors – “This might help.”, “It’s hard to predict what your child’s progress will be.”, “Some children do better with this.” – are usually captivated by a practitioner who says, “I can cure your child.”
So, if parents want to hear “I can help your child!”, why do the “mainstream” doctors “hedge” so much? Well, mostly it’s because they’re telling the truth. And not just the “truth” of what they “believe” is true – it’s the truth of what the data support.
Data on the eventual outcome of autistic children is not terribly abundant, but several studies have shown that the initial degree of disability - seen at the time of diagnosis or early on in the child’s development - is not a good predictor of eventual functional level. Studies have also shown that there are no treatments - even “mainstream” treatments – that work on all or even most autistic children. “Mainstream” doctors – the good ones, anyway - don’t talk of “cure” or “recovery”, they talk of managing specific problems, of helping the child become as functional and independent as possible. They do this because it is unethical to lie to patients (or their parents), even if it makes them “feel better”.
Feel the anger, Luke!:
It’s a sad fact of human nature that most people – all people, in some circumstances – will more readily believe a pleasant lie than an unpleasant truth. If you believe in the Kubler-Ross stages of grief, denial and anger are the first two stages in dealing with a loss – and finding that they have an autistic child is a loss to most parents. A practitioner who feeds into that denial and anger is more likely to be believed than one who tries to get the parents past that and into acceptance. It’s just the way we humans are.
Interestingly, many of the more militant so-called “autism advocacy” groups also feed on the denial and anger of parents. And – strangely enough - those that do are also the most active in promoting “alternative” autism therapies. It is a synergistic relationship. Keeping the parents “stuck” in their denial and anger profits the “alternative” practitioners and swells the ranks of the militant “advocacy” groups.
Anger is a very “empowering” emotion that can help people keep from feeling other “negative” emotions – like loss, grief, sadness and guilt. I mention guilt because much of the “alternative” autism field – and “alternative” medicine in general – is about shifting blame and avoiding guilt. Parents of autistic children (and children with other disabilities) almost always end up – at some point – wondering if they are to blame for their child’s disability. “Should I have eaten only pesticide-free organic food when I was pregnant?” “Should I have removed my amalgam fillings?” “Was it my genetics (or my spouse’s genetics)?” “What about that antibiotic I took – did it cause the autism?”
By shifting the “blame” for autism to a clearly external source – such as vaccines or pesticides or plasticizers – the practitioner (and advocacy group) can relieve the parents of the guilt they may be feeling. This may seem like a good thing, since the parents really aren’t to blame (as far as the data can tell), but it doesn’t deal with the guilt or resolve it, it just shifts the guilt one square away. Someone is guilty, it’s just not the parents….except that it still is.
The problem with shifting the blame is that it merely changes the target, not the “game”. Now, instead of blaming themselves (or the other parent), they can blame “the government” (a perrenial favorite for blame-shifting), doctors, pharmaceutical companies, “toxins” in the environment, “non-green” vacines - the list is endless. Unfortunately, since blame and guilt are “still in the game”, they can always be shifted back. That’s the chief flaw in the “blame game”: if your new target for blame doesn’t work out - the data shows that the MMR vaccine isn’t to blame, for instance - then you need a new target.
Or you can simply ignore that part of reality that conflicts with your ability to blame the old target - you can convince yourself that the studies were flawed or even fraudulent. As King Lear says, “Oh, that way madness lies; let me shun that.“ Good advice. The more of reality that you have to ignore, the harder it gets to have open discussions with people who are not “in” on your way of seeing (or, more appropriately, not seeing) the world.
The advantage of the “blame game”, from the perspective of “alternative” practitioners and militant advocacy groups is that it “locks in” the parents. Since the parents have to ignore more and more “inconvenient truths” about their world, it is easier for them to associate mostly with people who have the same “world non-view”. It can also be used as a tool to keep the parents in line. If the parents don’t do what they’re told – give this supplement, do this treatment, buy this device, support this rally, etc. – they are guilty of not doing “all they can do to recover their child”. In other words, if the parents don’t play the game, they get their guilt back - with interest.
On the other hand, if the parents had been allowed to deal with and resolve their feelings of guilt – perhaps with a supportive practitioner who told them that there was nobody to blame – they wouldn’t be as vulnerable to “guilt-tripping”.
Middlegames:
Time is on my side (with apologies to The Rolling Stones):
To understand how time works to the advantage of “alternative” practitioners, you have to understand something about the nature of autism. As I have said innumerable times, autism is a syndrome of developmental delay – not developmental stasis. Kids with autism continue to make progress, although it is slower than their typical peers. And like their typical peers, their development comes in spurts.
Thus, if you wait long enough, any autistic child will get “better”.
There are people who insist that their autistic child “didn’t make any progress” until “alternative” therapy XYZ. They are either not remembering correctly or their child doesn’t have autism. I’ll say it once more – autism is a syndrome of developmental delay, not developmental stasis.
I have noticed that more and more the “alternative” practitioners and many of the more militant “autism advocacy” groups are claiming that autistic children will not develop beyond some very early level without some sort of “intervention”. Even though this is not true – and has been known to be untrue since “autism” was first described – it does make it easier for the “alternative” practitioners to claim that their “interventions” were the cause of any progress made by the children under their care.
Thus, the criteria for judging an “alternative” autism therapy to be effective has been moved from “more improvement than placebo” (the standard for real medicine) to “any improvement at all – even if it’s unrelated to the therapy”. That makes it so much easier for the “alternative” practitioners (and their cheerleaders) to claim “success”. Whether or not their therapies “work” is irrelevant, as long as they “feel” that they do.
However, reality being what it is, some of the more observant parents (and even practitioners) have noticed that it sometimes takes longer for one child to show “improvement” than others. This is usually dealt with in one of two ways: either by adding more “therapies” (see: “A Shotgun Wedding” below) or by of saying “It takes some children longer than others.” – with or without a pseudoscientific explanation (e.g. “Your child has a serious gut dysbiosis.”) or parental guilt-tripping (e.g. “If we only you had come to me when he was younger…”). As they accumulate more experience with a particular “alternative therapy”, a gullible but observant “alternative” practitioner will often conclude that the amount of time it takes for the “therapy” to “work” is extremely variable. They will usually encourage parents to “wait it out” and to “give it a chance”. [note: A less gullible practitioner would also at least entertain the idea that the therapy might not "work" at all. Sadly, few "alternative" autism practitioners do.]
Folks who have been watching the “alternative” autism therapy scene for a while will have noticed this trend. When chelation first came out as an “alternative” treatment for autism, the practitioners using it were claiming that autistic children were “getting better” in a matter of weeks. Then it was months. Then a year. Then two. Now, it’s three years.
Think about it – if an autistic child doesn’t show some improvement in three years, they need a thorough work-up, not just more chelation.
And it’s not just the practitioners telling parents that “you need to give it more time”. If you visit any of the myriad “alternative” autism therapy groups on the Internet, you’ll read parents telling other parents to “just stick with it” and “don’t quit before the miracle”.
In this way, parents are kept “on the hook” long enough for a spontaneous improvement in their child’s condition to happen. They are then encouraged – by their peers and the practitioners – to attribute that improvement to the therapy (or therapies) they were using at the time.
One effect of this is that parents are often puzzled about how various “alternative” therapies “stop working”. In fact, the therapies haven’t “stopped working” – they never worked in the first place. A spontaneous improvement was seen and erroneously attributed to a therapy, and then the improvement stopped – as it always does.
Even in typical children, periods of advancement are followed by a period of little or no progress. A child learns to walk and then spends weeks or months “consolidating” that skill before moving on to the next milestone. If an autistic child is started on a therapy just before one of these spontaneous periods of advancement, it would be the rare parent who didn’t credit it with causing the improvement.
By extending the window of time that parents will attribute improvement to a treatment, the technique of telling them to “give it time to work” merely increases the chance that parents will mistakenly believe that it is the treatment that caused the (spontaneous) improvement.
In fact, you only have to look at the hundreds of therapies that are said to “work” for autism. Everything from ABA to Valtrex to HBOT has its cadre of loyal believers who are convinced that it has “recovered” their children.
One of these treatments –secretin – was once said to work “with the first dose” in up to 70% of autistic children. Then (surprise!) its supporters said that it took several weeks of treatment. Then months…..you get the idea.
Eventually, the science caught up with the hype and we found out that secretin was no more effective than salt water (saline) injections. Sadly, there are still people who believe that secretin “recovered” their children and there are still practitioners who prescribe it. In fact, the “Autism Research Institute” recently came out with yet another smoke-and-mirrors, hand-waving, pay-no-attention-to-the-man-behind-the-curtain “explanations” of why secretin seemed to work so well in initial (uncontrolled) trials yet failed so miserably when it was actually tested (more about that in another post).
A Shotgun Wedding:
In “mainstream” medicine, “shotgun therapy” is considered bad form, if not bad medical practice. “Shotgun therapy” is the practice of starting a number of treatments at the same time in the hope that one of them will work. The preferred approach is to use one treatment at a time, stopping those that do not work and adding others as needed to deal with problems that persist.
If too many treatments are started at the same time, it is often impossible to tell which one(s) is (are) working, thus obligating the patient to either keep going with all the therapies or start a long process of trial and error. Contrary to popular “alternative” belief, most “mainstream” doctors want to have their patients on as few therapies as practical.
For “alternative” practitioners, however, the “shotgun” is their favorite tool.
There are some “alternative” practitioners who avoid the “shotgun”, but most seem unable to put it down. It is an all-too-common story from parents visiting an “alternative” practitioner – they are overwhelmed with the number of therapies recommended. Some “alternative” practitioners seem to take the position that all the therapies are equally effective (or equally ineffective) and leave it up to the parents to choose which ones to try. Others have their own favorite group of therapies and use them on every patient, regardless of their complaint or diagnosis (which begs the question of how “individualized” these therapies are).
From my conversations with parents, it seems that the practitioners give them little or no guidance, telling them things like:
“Parents know more about their children than any doctor.”
“The parents are the best lab test.”
“I’ve learned everything I know about autism from parents”
These all sound so….empowering. Who could disagree with that?
The problem is that professionals – including medical professionals – are supposed to give their clients – their patients – their professional opinion about the best course of action. Of course, there are times when there is no clear best course and all choices are equally good or equally poor. But every time? The “alternative” practitioners who abdicate that responsibility have reduced themselves to the role of a self-help video.
But…..one advantage of that approach is that the parents cannot turn around at some later time and accuse the practitioners of making the wrong choice or giving bad advice – the practitioner has made no choices and given no advice. By forcing the parents to play the role of medical professional, the “alternative” practitioner makes THEM responsible for any failure. Of course, the “alternative” practitioner is always willing to take credit for any successes.
Insurance? We Don’t Take No Stinking Insurance!:
The “alternative” practitioners usually frame this issue in a way that makes them out to be the Brave Maverick Doctor fighting against the mindless minions of orthodoxy. “No, my treatments aren’t covered by insurance – the insurance companies are in the pocket of ‘Big Pharma’ and the AMA.”
In truth, most insurance companies will pay for an examination and evaluation by any licensed physician – and many licensed non-physician practitioners. However, they don’t pay as much as some of the “alternative” practitioners charge. An initial (”new patient”) visit with our pediatrician costs $150 and is scheduled for one hour. A one-hour “initial consultation” with one “alternative” practitioner (who has not completed any specialty training) is $800. Insurance companies won’t pay that much, so there is little incentive for this “alternative” practitioner to bother with insurance, not as long as they have a waiting list for appointments.
Not taking insurance also sidesteps one of the most effective monitoring programs in medicine. State medical boards have been largely emasculated by laws passed to benefit “alternative” practitioners, so the only effective check on physicians who use substandard, unproven or dangerous therapies are the insurance companies (including Medicare and Medicaid), which have fairly effective quality control programs.
Another kind of insurance – one that most patients don’t think to ask about – is malpractice insurance. Some of the “alternative” practitioners can’t even get malpractice insurance because they don’t have a license to practice medicine; others simply choose not to carry it. Being uninsured not only saves the practitioner money on insurance premiums, but it also actually reduces their risk of being sued. Few tort lawyers will take a case on contingency if the practitioner isn’t insured.
Pay no attention to the man behind the curtain:
Many “alternative” practitioners encourage their patients (or their parents) to ignore any “skepticism” they may hear about the treatments. The practitioners’ explanations vary slightly, but generally revolve around the theme that the “mainstream” medical community and/or “Big Pharma” either refuse to acknowledge the “truth” or – more ominously – know the truth but are covering it up to protect their profits or to prevent lawsuits and embarrassment.
This serves to prevent any information about the efficacy, safety or even plausibility of the treatment from interfering with the relationship between the “alternative” practitioner and their prey…I mean, their patients.
The practitioners are aided and abetted by the more militant “autism advocacy” groups, many of which openly accuse doctors, pharmaceutical companies and government agencies of conspiring to “cover up” the “real” cause of autism. Although believing in this level of conspiracy is nearly diagnostic of psychopathology, it also helps them (the practitioners and militant “autism advocacy” groups) keep the parents isolated from other sources of information. After all, if they can convince the parents that doctors (except, of course, for the “Brave Maverick Doctors”) and governmental agencies are part of a conspiracy of deception, then the only remaining source of information is…. the “alternative” practitioners and the militant “autism advocacy” groups.
Well, that’s enough for today. Next up - Endgames and Discussion.
Prometheus
Filed under: Autism Practitioners, Autism Science, Autism Treatments
September 10th, 2008 at 9:39 pm
you do make some valid points. I was part of the Bettleheim era generation, underwent psychoanalysis for over ten years, went from nonverbal at 3 and severely autistic to being mildly autistic at 4. My psychoanalyst took full credit for the recovery, yet hardly anyone nowadays promotes this as an intervention.
In your analysis of the secretin saga, you forgot to include the fact that Steve Edelson at ARI also promotes the results of Cindy Schneider’s nonpeer reviewed stuff that was just presented informally in a conference. You can read what i wrote about secretin on autism’s gadfly if you are interested.
September 11th, 2008 at 11:31 am
Very well done post, I enjoyed it because I have witnessed the statements and feelings described in each section. It does, however, seem that with time guilt is overshadowed by shame and that creates an even greater need to place blame away from yourself.
September 11th, 2008 at 3:35 pm
The alternative practitioner need not promise a cure. “It does not work with all children, but every child needs be given the chance at improvement I can provide.”, works just as well.
The attack on mainstream medicine does not have to be so blunt as to conjure up doctors as the tools of pharmaceutical corporation executives all rubbing their hands together in avaricious glee. Parents are told that mainstream medicine is behind on the science. Often the doctor explaining this has left his regular practice behind to concentrate on helping those with autism. He also attends conferences dedicated to the development of alternative therapies. The doctor is keenly interested in what’s presented there as he is thoroughly convinced what he does is helpful. This gives that doctor the cachet of a caring healer.
September 11th, 2008 at 5:34 pm
You state mainstream doctors say, “There is little than can be done.” It begs the question of just can what can be done.
You seem to be lumping in ABA with chelation, did you intend to do that, or am I inferring something which you did not mean? Neither ABA nor chelation is a cure. Chelation is at worst fatal, and at best does nothing. ABA, an integral part of the EIBI programs is not generally seen as an alternative therapy.
September 11th, 2008 at 7:28 pm
Mayfly,
I don’t believe that I mentioned ABA at all. I can’t find it in my post - did I miss something?
While ABA is not a “cure”, there are some less-than-scrupulous “therapists” who claim that it is. Chelation is also not a cure, but there is no data showing that it is even of any benefit - as you pointed out.
Since - as you also pointed out - ABA is not considered an “alternative” therapy, I don’t believe it is covered in this post.
Personally, I have no strong opinion about ABA one way or the other. My interpretation of the studies that have been done is that the effectiveness seems highly variable and “operator dependent”. In the “community” overall, there seems to be a general opinion that it is helpful. There are also concerns that - at least as it is practiced by some therapists - it can border on abuse.
As for the “mainstream” doctors saying “There is little that can be done.” - that is often what “alternative”-leaning parents report. I suspect that most doctors say something like “Nothing can cure autism, but there are therapies that can help your child be as functional as possible.”
I believe that I said pretty much the same thing in the section titled “I am the one”, where I said:
As far as what can be done, there are a variety of pharmaceutical and non-pharmaceutical “interventions” which have decent data to support them. There are others - like educational support - that haven’t been formally tested but are essentially “common sense”.
However, from the point of view of parents looking to “recover” (i.e. “get back”) their child, there is “little” (or nothing) that can do that.
I hope that answers your question.
Prometheus
September 11th, 2008 at 10:28 pm
The reason you can claim that autistic children get better over time is because the ones who get better have the APO-E3 protein and can gradually get rid of some of the mercury. The rest remain 2 year olds for their entire lives unless you remove the mercury.
Common sense to have teachers cure mercury poisoning?!! What have you ben smoking?!
September 11th, 2008 at 11:20 pm
Back when I was desperate and willing to throw common sense out the window in hopes of a cure, I heard a lot of lulus from the alternative practitioners who were eager to (take my money) help my child. Here are my “favorites”:
- “Your son throws up every time you put the auditory integration headphones on? That means it’s working!”
- “Not seeing any change after three months of metronome therapy (at only $150/hour twice a week)? But our (subjective and completely unscientific) measures show he’s made incredible improvement from baseline scores!”
- “Your (world-renowned) neurologist says the hyperbaric oxygen chamber does no good and may be risky for your seizure-prone child? What does she know?”
September 12th, 2008 at 8:07 am
Prometheus, you mentioned ABA in passing
“In fact, you only have to look at the hundreds of therapies that are said to “work” for autism. Everything from ABA to Valtrex to HBOT has its cadre of loyal believers who are convinced that it has “recovered” their children.”
I understand you were linking these as all have been claimed to cure, but to mention them together suggests they share the same efficacy in addressing autism.
“In the “community” overall, there seems to be a general opinion that it is helpful.” A true statement, but one having no bearing on whether ABA is effective or not. Anecdotal endorsements from the “community” should carry no more weight than those made by people outside of it. Luckily there have been several studies on ABA with the great majority showing it is an effective treatment,
I also want to thank you for not attacking the intentions of parents who go down the alternative medicine path, but instead trying to educate them of their folly. Your arguments are based on the strength and confidence of your positions, and not animosity toward those who hold opposing views. This is indeed refreshing and all to rare on blogs.
September 12th, 2008 at 12:01 pm
Orca (with a whale.to address) nicely demonstrates the current attempt to re-define autism as a static condition, this time by conjuring up an obscure (and unsupported by data) hypothesis.
In fact, there have been a number of studies on the associations between Apolipoprotein E (Apo-E) genes and autism.
Raidford et al (2004) found no association between the three Apo-E isoforms (E2, E3 and E4) and autism in 322 families.
Persico et al (2004) found an association between autism and Apo-E2 in 119 families, but also found that the autistic children did not differ from their non-autistic siblings in their Apo-E isoforms.
Ashley-Koch et al (2007) studied 470 families and found no association between Apo-E isoforms and autism.
Orca - of course - offers no data or references to studies to support the idea that Apo-E3 is protective from mercury. This is not too surprising, since I can find nothing published on the subject.
There does appear to be an association between Apo-E4 and Alzheimer’s disease (AD) and some people have hypothesized that AD is caused by mercury, but the data connecting AD and mercury is weak, at best.
Any connection between Apo-E and mercury “detoxification” is currently without any support. However, you’ll note that this didn’t stop Orca from asserting the connection as though it were a well-established fact. Which it isn’t - not by a long shot.
You’ll also have noticed that Orca makes the claim that:
Of course, this is also not supported by any data and also runs contrary to what clinicians and researchers report, as well as what parents observe. In fact (do I really have to say this again?), autism is defined as a sydrome of developmental delay, not developmental stasis. If a child remains a two-year-old their entire life, they don’t have autism.
Orca’s ad hoc hypothesis is characteristic of the type of goal-post-shifting responses “alternative” practitioners come up with when the data contradict their beliefs. It sounds like science, but it isn’t. It’s like saying that the square root of orange is mauve - it sounds like mathematics, but it isn’t. It’s just pseudoscience and mumbo-jumbo dressed up in a lab coat.
Prometheus
September 12th, 2008 at 5:07 pm
In the entire history of autism, no person had ever improved until chelation was used to treat it. All of a sudden, pseudonymous neuroinsane asylum escapees started clamoring about spontaneous recovery to try to discredit chelation. So, what do we believe, doctors who observed autistics for about 70 years or a bunch of anonymous idiots?
September 13th, 2008 at 5:04 pm
Thank you for yet another elegant and masterly analysis. I only have one quibble. I disagree with your comment that educational supports are essentially “common sense.” As a specialist teacher I see a steady stream of children for whom the common sense solutions applied by mainstream educators have failed completely.
Educating and parenting an autistic child entails an understanding that is often counter-intuitive. In the UK the National Autistic Society has pioneered training for parents and particularly for fathers, as well as educators.
I teach mixed groups of autistic and non-autistic children with additional learning difficulties. It is my experience that when I succeed in creating an autism friendly learning environment it benefits the non-autistic pupils as well. Perhaps we need more pedagogy and less common sense when it comes to educating all our children.
September 13th, 2008 at 9:40 pm
Prometheus,
Great post (as always).
It is truly amazing what power the vodoo has over people’s lives. They will bankrupt themselvs, leave their spouses, subject their children to the most abominable “treatments” one could imagine, and for what?
False hope, relief from guilt, and the chance to rage at the world.
Meanwhile their lives slip away.
Joe
September 15th, 2008 at 4:11 pm
I am the father of an autistic child and a former member of the ‘AMA = Evil’ camp. Fortunately for my son I learned the importance of evidence and rid myself of the conspiracy-theory mindset before he was born.
I have pointed several of my friends and relatives towards this post. It is well-written, accessible, and (most importantly) backed up by evidence. Thank you.
September 16th, 2008 at 11:05 am
“It’s like saying that the square root of orange is mauve”
WHOA!!! I know this is off-topic, but that thought just made my day!
:) 
Off I go to contemplate the square roots of colors, and what they taste and smell like!
September 17th, 2008 at 12:26 am
Prometheus,
I just discoveered your blog. You write well and are well versed in medicine and clinical studies. Your interpretations are convincing and logical. I would boldly guess you have a medical degree or Ph.D. in a related field.
I generally agree with your sceptisism about “alternative” medicine. Indeed, a lot of it is based on hearsay, denial and imaginative interpretation of questionable data.
If you would be similarly sceptical of “mainstream” medicine we would be on the same page. Surely, there is a lot of good knowledge in “mainstream” medicine. My hat is off to the scientists who colect data and spend their life looking for answers to things we don’t understand and to all practitioners who try to apply this knowledge to help their patients. They are real heroes and they try their best. In no way am I trying to equate “mainstream” and “alternative” medicine.
Yet, I find it regretful how frequently medical authorities deny the limitations of their science and knowledge. Has anyone indeed studied, in a randomized, long-term follow-up, placebo controlled study, the safety of immunizing children on the day they are born? Has there been a placebo controlled study of the aggressive immunization schedule promoted by the AAP and the CDC?
When we examine the possibility that vaccines may have caused autism in some children, we have to admit that data to prove or disprove the link is not there. Even more, we have to admit that it may be impossible to collect such data. Statistical studies have their limitations, and this is especially true for retrospective, observational studies.
On the medical side, our understanding of the immune system is rudimentary. Our understanding of the interactions of genetics and the environment is almost nill.
A little humility in the face of things we don’t fully understand would help move our understanding forward. I have not seen such humility on neither side of the debate. Aggressive accusations from autism parents are met with aggressive denials and ridicule. Ignoring facts and providing questionable interpretations to advance a political agenda is common. We behave like little chidren. Sadly, we do this at the expense of our children.
Best,
Bisser
September 17th, 2008 at 11:20 am
Orca,
I suggest that you read the following before you attempt to reply:
Lord et al (2006) “Autism From 2 to 9 Years of Age”
(http://archpsyc.ama-assn.org/cgi/content/full/63/6/694)
Magiati et al (2007) “A two-year prospective follow-up study of community-based early intensive behavioural intervention and specialist nursery provision for children with autism spectrum disorders”
(http://www3.interscience.wiley.com/journal/117960640/abstract?CRETRY=1&SRETRY=0)
These are but two of the dozens of studies that have shown that - even without chelation - autistic children continue to develop, albeit slower than their “neurotypical” peers.
This sort of “documentation by assertion” may play well at whale.to, but it doesn’t work here.
Prometheus
September 17th, 2008 at 11:38 am
Mike,
I meant that the use of educational supports is “common sense”. Clearly, the form of those supports is the hard part.
Bisser,
In science, “humility” means staying within the bounds of the data. So far, the data we have strongly suggests that vaccines do not cause autism. The “other side” lacks data supporting their hypothesis that vaccines cause autism. If “they” ever come forward with some legitimate data, then we can discuss that.
The argument that we can’t “know” that vaccines don’t cause autism because we don’t know all there is to know about - for instance - the immune system is a fallacy. We can know that the data don’t support a connection between autism and vaccination even if we don’t know what causes autism and we don’t know everything about the immune system.
This sort of “we don’t know everything, so we can’t ever know that something doesn’t cause autism” argument is widely used among those who promote “alternative” autism treatments. It’s a variation of the “Argument from Ignorance” fallacy. It’s the same as saying that since we don’t know who did commit a crime, we can’t eliminate anyone as a suspect. Sounds pretty silly, doesn’t it?
Prometheus
September 17th, 2008 at 2:23 pm
Yes, Prometheus, humility means staying within the bounds of the data. We don’t have the data to eliminate vaccinations as a suspect. So far the only evidence exonerating vaccinations is epidemiological. I am a statistician and I have looked at the studies. I find them lacking in many ways. But even more importantly, epidemiology alone cannot prove conclusively that there is no causation.
Thinking about the problem in terms of “our side” and “the other side” is silly. This is not a game where there are “sides” or “teams”. Aren’t we all on the same side? Aren’t we all trying to understand what causes autism and to find ways to improve the lifes of people with autism? Who is the “other side” that needs to provide data for “their” hypothesis?
To make my point that we don’t have and cannot possibly collect data to reject the vaccination etiology hypothesis, let’s think what a good study will require. First, look at sample size. Assume one third of all autim cases are due to vaccinations and the rate in the vaccinated group is 0.6% (6 in 1000), thus the rate in the unvacinated group would be 0.4% (4 in 1000). A study with error level 5% and power 95% would require 26,917 vaccinated and 26,917 unvaccinated children (here is a sample size calculator ). Second, we would need to do a randomized, double-blind study. What are the chances of getting permission to recruit over 50,000 children and randomize them to immunization or placebo?
This “gold standard” hypothetical study does not even consider real life problems, e.g. children dropping out or the fact that autism is a subjective diagnosis which is not based on a well-defined biological measurement. Can we now agree that we don’t have the data, one way or the other? Can we agree that making a conclusion on epidemiology alone is all but impossible in this case?
Best,
Bisser
September 18th, 2008 at 9:02 pm
Bisser,
As an statistician, do you have an opinion about the quality of the “studies” that purport to show an association between autism and vaccination? My opinion, as a biologist with a great deal of experience in statistics, is that the “data” showing an association is below weak and beyond flawed.
This is the point. If the current epidemiological data cannot prove that vaccines don’t cause autism, then the available data also don’t prove (or even suggest) that they do.
For that matter, why single out vaccines? A lot of things have changed since the putative start of the alleged “autism epidemic” - TV viewing, cellular telephones, WiFi, etc. Why single out vaccines?
And while we’re on the subject, what do you as a statistician think about the data supporting the alleged “autism epidemic”? Surely you must have concerns about the quality and validity of the data sources, not to mention the drifting diagnostic criteria.
I can’t quite agree with you that we don’t have “the data, one way or another” - there is no data supporting the alleged connection between vaccines and autism, and there is a lot of epidemiologic data showing that there is no connection. Comparing epidemiological data - with all of its inherent limitations - to no data at all gives me reason to assume that there is no connection.
If you are arguing that we should assume that there is a problem until there is data showing that there isn’t a problem, then why should we stop at vaccines? How about plasticizers (currently in the news)? Or the increase in parental age? Or the increase in cellular phone use? Almost anything can fit, if your only criteria is that is hasn’t been proven to not cause autism.
I try very hard to keep an open mind - as befits any scientist. If someone has data showing that there is a connection between autism and vaccines (or cellular telephones or Britney Spears), I’m very interested in hearing it. However, if all they have is a story about how it might be possible or how we don’t know that [fill in the blank] doesn’t cause autism, then I’ll just listen (more or less politely, depending on my day) and move on to more fruitful matters.
Thanks for your input.
Prometheus
September 18th, 2008 at 11:41 pm
Prometheus,
There are no studies showing any connection between vaccination and autism, at least none that I know of. The “data” there is mostly anectodal. I find some of the stories rather convincing, but the objectivity of the parents and their interpretation of the sequence of events can always be disputed if you are so inclined.
I do not suggest that we single out vaccinations. Other potential contributors are environmental polution (especially mercury and pesticide accumulation), plastisizers, medical interventions during childbirth (e.g. pitocin), the use of antibiotics and other medications (which has incresed significantly over the years), bad diet (including food additives and preservatives), increased parental age… The list is very long. We simply don’t know what contributes to autism. Considering the variety of symptoms autistics exibit it is likely there is more than one biological condition that can cause “autism”. It is very likely there are many contributing factors. All I was trying to say is that vaccinations still belong on the list, we don’t have enough evidence to take them off.
The autism epidemic is another issue where data and its interpretation is questioned. If we look at the California special education data or at prevalence estimates over the years the trend is clear. Why do so many question the data? The problem here is that we really don’t have a good, objective definition of autism.
The “autism epidemic” controversy ties back to the previous discussion about vaccinations and other causes. The fact that we don’t have a clear answer even to this question, which should be a simple question for epidemiology to answer, should make us that much more suspicious about any epidemiology driven conclusions in autism.
Some people question the data which show multifold increase in autism over the years, yet they are very comfortable exonerating vaccinations using much weaker data as an argument. Other people do exactly the opposite and embrace the “autism epidemic” data, but question everything else. People choose what data to trust and what data to question based on their personal bias and political goals rather than the quality of the data. Frequently they don’t have the information and/or knowledge to evaluate the quality of the data at all.
You asked my personal opinion about the “autism epidemic”. I feel that while some of the increase is definitely due to changing methodology and incresed awareness, a large part of it is probably real. I cannot find a logical explanation as to why there would be such huge increase in awareness if there were no change in the “conditions on the ground” at all.
Data is important, but data collection, analysis and interpretation are not as objective as we would like. In theoretical statistics we can postulate abstract models and analyse them mathematically. Real life does not work like that. Science is about reproducibility, but one-time events cannot be reproduced. We cannot go back in time to estimate autism rates in 1940 by today’s methods, we cannot know what would have happened if this particular child was not vaccinated.
Epidemiology and statistics have limitations. We should look at a lot more than just statistical data. We should look at animal models, we should listen to anecdotes, we should look at in vitro data. We need to put all of these together.
So keep an open mind and listen to other people with the same respect you expect them to have when they listen to you. None of us knows all the answers and we can all learn from each other.
Good blog, keep up the good work!
Bisser
September 22nd, 2008 at 4:47 pm
That’s obviously John Best. Who else would post such nonsense? It’s his style.
Are we to believe that Kanner’s patients were chelated? Except for the ones who were institutionalized, I haven’t seen any indications any of the others didn’t “improve.”
September 22nd, 2008 at 4:55 pm
That is actually true. But in fact nothing can prove conclusively that there is no causation. It’s simply impossible to prove this type of negative. Can you prove that I can’t fly? It’s impossible. A moot point really. That’s why many scientists are cautious in their statements. They will say “there is no evidence that links autism and vaccines” rather than “it has been proven vaccines don’t cause autism.” But in the real world it’s clear that vaccines are not associated with autism, any more than I can fly.
September 22nd, 2008 at 8:53 pm
I agree. Well done.
I posted a title “Shotgun Therapy” several weeks back and it was included in one of the Skeptic’s Circle Meetings. I will have it linked in tomorrow’s post, along with several posts on sensory integration therapy. Come by to enjoy, but remember, I write for parents, not scientists.
September 23rd, 2008 at 5:31 am
An excellent article that I think should apply across the entire spectrum of “alternative treatments.”
September 23rd, 2008 at 12:48 pm
Bisser,
Doesn’t your sample size calculation cut both ways?
Perhaps antivaxxers are therefore correct to say that published epidemiological studies cannot disprove the link between vaccines and autism because no study has ever had sufficient power to detect a small but significant difference?
September 25th, 2008 at 9:05 am
“But in the real world it’s clear that vaccines are not associated with autism, any more than I can fly.”
This reminds me of an old math joke from my college years:
“If you can’t prove something, say it is obvious.”
September 25th, 2008 at 3:19 pm
DT,
Yes. This is exactly what I was trying to say.
June 15th, 2009 at 11:19 am
[...] he is helping autistic children with his “Lupron protocol,” as autism is a condition of developmental delay, not stasis. Many autistic children improve simply with growth and development, and without a control group and [...]
November 23rd, 2009 at 1:02 am
[...] that, as Prometheus has pointed out time and time again, autism is a disorder of developmental delay, not developmental stasis. [...]