Tuesday, December 7, 2010

The Woo of Woo

Over on the blog formerly known as Countering Age of Autism there was a post a few weeks back that claimed to be a guide to help parents avoid "woo".  The premise of the post was that there are a lot of sites on the internet that try and sell treatments for autism and it can be difficult to separate the good ones from the bad ones -
How do we evaluate the claims of these products and prevent ourselves from (1) wasting precious financial resources, and (2) putting our precious children in harm's way? There are some key things that one can look for that indicate woo and pseudoscience. We don't have to be experts in a field; we just have to know how to evaluate claims and evidence.
The post continues with six tips on how to avoid bad treatments, aka "woo".  The tips start out with phrases to look out for such as "Natural", "Organic", and "Doctor recommended", continue on with an admonition about discounting testimonials, anecdotes, guided questionnaires, and illegitimate published articles, before finally ending with the suggestion that only people with an appropriate pedigrees can make a good product.

While I do agree with the overall theme of the post - that it is hard to determine whether a particular treatment is worth it - I have to disagree with the idea that all you need is a cheat sheet of things to avoid.

As anyone who has seriously looked into treating autism can tell you, it can be difficult to determine whether any treatment - mainstream or alternative - will be able to deliver on its promises.  And, even when you can establish that a treatment can work, it is still very difficult to know whether a specific treatment will work for a specific person with autism.  Take a well-supported, mainstream treatment like ABA - for some children it can do wonders and give them back their ability to function while others won't respond to it at all.

The problem is that, because so little is known about what autism is or what causes it, it is hard to know what exactly what will help in general let alone what will help a specific person.

In general, science understands very little about autism and, specifically, has no clue why some things will work for one person but not another.  "Woo" or "pseudoscience" has nothing to do with it.

Although, I have to say, I strongly dislike the idea of "woo".  Science is about the open exchange of ideas and is a methodology for trying to understand the world.  There is absolutely nothing about science that proclaims that the current understanding is "The Truth" and everything else is wrong.  If anything, the idea of "we know that isn't true" is almost the opposite of what science is about.  Science is more "we think this might be the case" but is willing to quickly change its mind if some new bit of evidence comes along.

Sure you will find people who cling onto an idea long past the point that there is any evidence supporting it, but that problem applies equally to those who think that they know what "Science Says".  As soon as you get too attached to the idea that you know something and consider the "other side" to be the great unwashed who worships woo, you have missed the entire point.  You have become the problem rather than the solution.

Arrogance is the antithesis of science.

So, rather than labeling something as "woo" simply on the basis of required legal disclaimers and marketing terms, I would suggest putting down the woo detector and using your head instead.  It is possible to develop a general understanding of a subject area without having to spend years and years becoming an expert.

It is important to develop this general understanding because, most of the time, the responsibility for treating a child's autism is left up to the parents.  Sure, in a perfect world you would have an expert medical team on your side that can evaluate your child's specific situation and come up with an appropriate care plan.  But the chances of that happening are remote.

The majority of time, parents are left on their own and have to sort through a large set of possible treatments and decide what is appropriate with very little guidance from medical "experts".

So, if you are a parent and want to treat your child's autism, you are going to have to develop at least a basic understanding of what it is that you are doing.  You will have to have a way to determine what is an appropriate thing to try and what is not.

I personally find it helpful to find out the answers to the following questions whenever I run across some new treatment option -

1. What exactly is the treatment?
2. What is it supposed to do?
3. How is it supposed to work?
4. Do other independent and reputable sources agree?

And then look at the specific reasons for trying this treatment with this child -

5. What specific problem am I trying to address?
6. Why do I think that this treatment will help with this problem?

Before finally getting to the problem of reputation -

7. Do I trust this specific company or entity to provide this treatment?

If I don't know or am uncomfortable with any of the answers to the questions then I would not try the treatment.

This list of questions doesn't just apply to those "woo" treatment like vitamins and probiotics but rather to any treatment that you are thinking of trying.  You need to take the time to understand what it is any why you would want to do it because it is unlikely that anyone is going to do it for you.

22 comments:

  1. I didn't even know what Woo was until I read this post.
    I'd like to ask the developers of this "enlightened" system if they could come over to my house, observe our circumstances and advise us on the absolute "right" way to proceede but I doubt they'd be willing to come down off of their high horse to help me out.
    Actually I don't want to ask them anything because I have no interest in their opinion. NONE!

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  2. MJ, I'm afraid that you have constructed a strawman fallacy by beginning your post conflating truth and evidence. You say you agree with Kim's premise and even go so far as to list reasonable criteria for a potential treatment. So where is the disagreement really?

    Astrology is woo, straight chiropracty is woo, homeopathy is woo, facilitated communication is woo, secretin and chelation for autism is woo. All by the criteria that you have set forth. I sense that you perhaps take exception to the use of the term woo because you have ventured outside the realm of evidence-based treatments yourself. If I am wrong, then I do apologise in advance.

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  3. Thank you for your extended commentary on my post. First, to clarify, I never concluded that “all you need is a cheat sheet of things to avoid.”

    Second, you write, “The problem is that, because so little is known about what autism is or what causes it, it is hard to know what exactly what will help in general let alone what will help a specific person.” Later, though, you conclude, “It is possible to develop a general understanding of a subject area without having to spend years and years becoming an expert.” Which is it? Either “little is known” or we can “develop a general understanding”? It seems, at least within the area of autism, which you’ve decided “so little is known,” that being aware of pseudoscientific claims is all the more important, since you charge that “science” “has no clue why some things will work for one person but not another.”
    Third, you allege that my last tip was “only people with an appropriate pedigrees can make a good product.” That is, at best, a really poor paraphrase. It was “Look at the credentials of the persons running the company.” Instead, you seem to be suggesting that trust, in your list of tips, is more important than whether the individuals selling the product are actual experts in their fields. Trust. Hmm. Forgive me, but I believe I’ll look to whether individuals have the requisite training to provide the treatments they offer. It’s the difference between going to someone who says they do ABA and someone who is licensed to do ABA, for example.


    Autism Mom, I appreciate the idea that I am an enlightened we and on a high horse; that's the inherent problem in reading someone's take on a piece rather than reading the original piece yourself.

    On a completely unrelated note, I've added you to the family members section of the Autism Blog Directory, our 250th family member blog. MJ, you're 251! :-)

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  4. Like the list.

    We did the diet, but our eldest had daily diahhrea, daily nightmares/terrors - including during nap time, and a Dr that said he was teething and a Dev Ped that said "some children with autism are like that".

    No... they aren't. Were we doing it for a "cure"... no... we were doing it to get some sleep and help with toiletting. Did it help? Yes. Turned out he was dairy intolerant and within 48hrs all our symptoms were gone. A week later, a tiny bit of butter and we had a VERY miserable 24hrs.

    Saying that, do I recommend it as cure... no... I have a severely autistic child as well... no stomach upsets, no nightmares or terrors and guess what... no changes on the diet.

    Then there was the ABA fiasco....

    We simply do what is right for us and they are thriving. I find in internet-land and RL, those that do what is right for their family and don't listen to the "camps", have better outcomes than those that get stuck in a rut b/c someone said "this is the only therapy, the only diet, the only..." Flexibility and an open mind.... always.

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  5. Farmwife Two, I love that:" Flexibility and an open mind.... always."

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  6. We simply do what is right for us and they are thriving. I find in internet-land and RL, those that do what is right for their family and don't listen to the "camps", have better outcomes than those that get stuck in a rut b/c someone said "this is the only therapy, the only diet, the only..." Flexibility and an open mind.... always.

    This is a valid point. But I think it gets dodgy when venturing off into the realm of the completely unknown and often biologically implausible 'cures'. I think that anyone can find sufficient "evidence" if they look hard enough but the tough questions to ask oneself are, 'Does this have any empirical evidence behind it?', 'Is this really biologically plausible?', 'Does this treatment have the potential for harm, if so, what?', Do the potential benefits truly outweigh the risks?' and 'Do we know those risks and benefits?'

    An open mind is awesome, but not so open your brains fall out.

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  7. Hello friends -

    Interesting discussion.

    I think the extreme 'sides' of this argument are largely arguing the wrong thing; that treatments necessarily need to be a 'cure' for them to be useful, or not useful. With no small amount of happiness, I notice that there seems to be examples of nuance on both sides in this relatively short discussion.

    Similar to FarmWifeTwo, our son (and now, family) are GF and largely CF, not because it cures his autism, but rather, because he experiences difficult to misinterpret gastro issues and/or excema when he gets those items. We think (?) his behaviors are affected, but do we really need validation of that when we can readily identify the gastrointestinal effects?

    Similarly, I believe we are beginning to learn enough about the physiological findings in autism to know what to test for, to see if a particular supplement or other action might be benificial; at least in some instances, to address some of ScienceMom's 'tough questions', as long as we are hoping to make a child with autism healthier, as opposed to 'cure' them.

    Of course, the problem of discerning other effects is a big one, one that probably isn't given the weight it should be. The more I read, the more I become convinced that 'side effects' ought to be called 'unwanted effects', and anytime you try to monkey around with something as fundamental as fatty acids, oxidative stress, immune function, neurotransmitters, or lots of other areas in autism, you aren't only going to hit your target (assuming you are going to hit your target at all), but you are going to be tinkering with lots of other stuff too, and subtle changes are still changes. Unfortunately, I don't really forsee a time when our analytic capacities allow us to gain full grasp of this in a meaningful timeframe when many of us have children that are struggling, or suffering, now. There will likely be some best guesses for quite some time to come, for good or for worse.

    - pD

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  8. What struck me about Kwombles post is that it was a bit of a strawman. I don't know of anyone who decides on a treatment for anything by looking at an advertisement...oh, except for prescription drugs.

    No, in real life, a real person would hear from another real person something like this: "my kid has been doing really well since we started doing MB12 shots."

    The next stage would involve some general research on MB12 shots and what they might or might not do for a particular child with a particular mix of symptoms and challenges.

    After that, if it sounds like it might be helpful, a sensible person would dig a bit deeper, ask for references from other folk, do some PubMed searches...

    At the very end of the process, THEN you start looking at people who sell the product. Starting from the people who sell the product is crazy. Except, of course, when it comes to prescription drugs, where the patent system gives you one brand and one brand only until the patent expires.

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  9. Minority,

    Since I didn't argue that people made decisions solely on an ad, the rest of my post is not a strawman argument.

    There are things people should be aware of when viewing ads selling products that indicate an absence of evidence for the product. I can't imagine why anyone other than the advertisers would have a problem with people being aware of key words indicating propaganda that they should be skeptical of.

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  10. Science Mom,

    I'm afraid that I don't quite follow you. I understand the difference between truth and evidence but I fail to see how that applies to "woo". Calling something "woo" is making a far stronger statement than simply saying that you believe that you have evidence on your side. It is, at least to me, the same as saying that you don't just think the the opposing view is wrong, you know it - and then adding an extra helping of scorn on top - how could they be so stupid as to believe that.

    As for venturing outside "evidence-based" treatments, that depends on your definition of evidence. Every single thing we have tried with our children has been because a medical professional with the appropriate pedigree has recommended it OR there is sufficient evidence for us to think - based on the criteria above - that the treatment will work and involve an acceptable risk.

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  11. KWombles,

    "First, to clarify, I never concluded that “all you need is a cheat sheet of things to avoid.” "

    OK, you didn't specifically call it a cheat sheet but you did call it a primer and give tips for avoiding "woo". I think the basic idea is the same. Six of one, half dozen of the other.

    "Which is it? Either “little is known” or we can “develop a general understanding”? "

    Perhaps I was little confusing. The "little is known" was meant to refer to autism as a whole while the "general understanding" was directed at understanding what a particular treatment was meant to accomplish. I can simultaneously know very little about autism but know enough about what a specific treatment, say giving an omega-3 supplement, is supposed to do to make an informed decision.

    "That is, at best, a really poor paraphrase. It was “Look at the credentials of the persons running the company.”"

    Actually, I think it was a completely appropriate phrase. Simply having a few letters behind your name or having attended a well-known program doesn't mean you know what you are doing. I am not saying that education is worthless but rather basing a decision on that is problematic at best.

    You first decide whether the treatment as a whole is worthwhile and then decide if a particular provider is on the up and up, not the other way around. For example, I would first consider whether a probiotic was an appropriate treatment to try for my children before I would look to see if CytoFlora was the probiotic to use.

    "Trust. Hmm. Forgive me, but I believe I’ll look to whether individuals have the requisite training to provide the treatments they offer. "

    Let me ask you this, what is the difference between trusting the individual or company and looking to see whether an individual has the appropriate training? I think that you are simply shifting your trust from the individual who is actively doing the work to the institution that issued a little piece of paper.

    "I've added you to the family members section of the Autism Blog Directory"

    Thanks.

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  12. Farmwifetwo & pD -

    You both brought up an excellent point that I think gets frequently overlooked. Treatments for autism are usually meant to treat some symptom that a child has rather than to be a cure for autism.

    Two of my daughters are on a GFCFSF diet and we keep them on the diet because it appears to treat some of their symptoms. It isn't a cure for their autism but we are fairly certain that it has helped some physical symptoms that they had and gives them a better ability to focus. It may be a pain to keep them on the diet but the risks (which can be easily mitigated) are far out-weighted by the rewards (less physical symptoms, better attention, less stims).

    We use ABA with all three of our daughters - not because it "cures" but because it helps teach them the skills that they need.

    The same goes for other treatments that we use with them. None of the them is a cure but each is designed to slowly chip away at the disabling aspects of their autism in an attempt to give them back the abilities that autism took from them.

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  13. What struck me about Kwombles post is that it was a bit of a strawman. I don't know of anyone who decides on a treatment for anything by looking at an advertisement...oh, except for prescription drugs.

    @ Minority, really? OSR anyone? A visit to the Yahoo mercury-autism group should clear up that misconception for you. The vast majority of 'autism treatments' are predicated upon advertisement, whether that is in the form of word-of-mouth, internet or print advert. We are very aware of the follys and foibles of the pharmaceutical industry, it's a red herring for the topic of this conversation.

    @ pD, great post!

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  14. @ MJ:
    I'm afraid that I don't quite follow you. I understand the difference between truth and evidence but I fail to see how that applies to "woo".

    Well let's take a look at your statement, "Although, I have to say, I strongly dislike the idea of "woo". Science is about the open exchange of ideas and is a methodology for trying to understand the world. There is absolutely nothing about science that proclaims that the current understanding is "The Truth" and everything else is wrong. If anything, the idea of "we know that isn't true" is almost the opposite of what science is about. Science is more "we think this might be the case" but is willing to quickly change its mind if some new bit of evidence comes along."

    This is a strawman since Kim mentioned nothing of absolute truths. Simply the current body of evidence does not support the use of X, Y, or Z for whatever, some is outright fallacious (beware of woo) so do your homework before embarking on a particular course and here are some tips.

    Calling something "woo" is making a far stronger statement than simply saying that you believe that you have evidence on your side. It is, at least to me, the same as saying that you don't just think the the opposing view is wrong, you know it - and then adding an extra helping of scorn on top - how could they be so stupid as to believe that.

    You are not looking at her statements in the proper context. She provided specific examples of BioRay's products and vacuous claims and sciency-sounding rhetoric which are woo, like it or not. It's not always that we need evidence of inefficacy to deem something wooey, but sometimes no evidence of safety and efficacy for certain claims.

    Since woo isn't an accepted scientific term, it would be inappropriate to use it in a professional paper, or conference. But it's use in a blog as a rhetorical tool is not. I believe that your objection to the term originates from your being open to using unproven modalities but don't wish to acknowledge that you would be so pedestrian to do so.

    As for venturing outside "evidence-based" treatments, that depends on your definition of evidence. Every single thing we have tried with our children has been because a medical professional with the appropriate pedigree has recommended it OR there is sufficient evidence for us to think - based on the criteria above - that the treatment will work and involve an acceptable risk.

    The definition of evidence-based isn't so vague you know, your appeal to authority notwithstanding. It would be more helpful if you provided specific examples for DAN! doctors routinely recommend dubious 'treatments', often based upon tenuous biological associations and/or very questionable tests. There is also the question of interactions, with little to no qualification of experimental autism treatments, particularly in the form of proper research, there remains a big black hole of numerous negative consequences.

    Operating within the realm of evidence-based treatments that are appropriately monitored, e.g. GF/CF diets, that do provide positive results and you negate the negative ones, you get no argument from me. It is perfectly reasonable to address co-morbidities or symptoms to improve one's quality of life.

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  15. Science Mom,

    "This is a strawman since Kim mentioned nothing of absolute truths"

    And if I was quoting Kim or talking about her statements at that particular point in the post, you might have a point. But I wasn't, I was talking about the concept of "woo" as I have seen it used.

    "She provided specific examples of BioRay's products and vacuous claims and sciency-sounding rhetoric which are woo"

    OK, lets take a look at one of the tips - the use of the words "natural" or "organic". She claims that is is a "gimmick" and "operates off people's inferences". But in the case of Bioray that isn't even accurate. They actually spell out exactly what they mean by the terms -

    http://www.bioraynaturaldetox.com/bioray-organic-standards/

    and

    http://www.bioraynaturaldetox.com/bioray-organic-standards/quality-assurance.aspx

    Now, you can argue whether all of this is needed but it certainly isn't just a "gimmick" or "implication".

    And that is the entire problem with a list of tips. If you were to follow the advice you would see "organic" and "natural" and assume "woo" when in fact there is substance behind those words. The decision should be whether you think that testing for specific types of contamination, using sustainable growing techniques, or any of the other items on those pages are worth it.

    You need to consider the substance of the matter, not the appearance.

    "I believe that your objection to the term originates from your being open to using unproven modalities but don't wish to acknowledge that you would be so pedestrian to do so."

    I thought I already answered you on that point.

    "The definition of evidence-based isn't so vague you know, your appeal to authority notwithstanding."

    As I am sure you know, there are many different levels and strength of evidence, so it does depend on how much evidence you are comfortable with. Some people want randomized, placebo controlled trials while some people would be happy just with a specific doctor's educated opinion - and then there is everything in between.

    And, no, it wasn't an "appeal to authority" but rather a factual statement. If one of the several medical professionals who are involved in treating my children makes a suggestion for a treatment and they have a basis for that statement then we are likely to follow their advance.

    For example, a developmental pediatrician tested my children's zinc and iron levels and found that they were deficient in both. He suggested that we give them daily zinc and iron supplements to raise their levels and we did. As a result they are no longer as deficient in iron or zinc, although they still have trouble maintaining their levels of both.

    To me, that is evidence based even though I have never seen any formal study that demonstrates that oral iron or oral zinc supplementation can raise the respective nutrient levels. Would you consider that evidence based or not?

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  16. "She provided specific examples of BioRay's products and vacuous claims and sciency-sounding rhetoric which are woo"

    OK, lets take a look at one of the tips - the use of the words "natural" or "organic". She claims that is is a "gimmick" and "operates off people's inferences". But in the case of Bioray that isn't even accurate. They actually spell out exactly what they mean by the terms -

    http://www.bioraynaturaldetox.com/bioray-organic-standards/

    and

    http://www.bioraynaturaldetox.com/bioray-organic-standards/quality-assurance.aspx

    Now, you can argue whether all of this is needed but it certainly isn't just a "gimmick" or "implication".

    And that is the entire problem with a list of tips. If you were to follow the advice you would see "organic" and "natural" and assume "woo" when in fact there is substance behind those words. The decision should be whether you think that testing for specific types of contamination, using sustainable growing techniques, or any of the other items on those pages are worth it.


    Yes, let's look at what Kim actually said: "Tip off number 1: Natural. Natural implies better, safer, but has no particular relevance when it comes to safety or efficacy. It's a gimmick and operates off people's inferences. Look for words like "natural" and "organic."

    Emphasis mine. I absolutely agree with this statement and if you do adhere to your own criteria, you should too. Sure BioRay qualifies their organic status and GMP status, but what is conspicuously absent are the certifying organisation for organic and they also use a private company for GMP certification, rather than the top U.S. standards of the FDA and the U.S. Pharmacopeia. But more importantly, what is also conspicuously absent is any evidence of

    Efficacy and Safety.

    The utilisation of 'organic' and 'natural' are empty qualifications that are intentionally marketed for the average consumer who erroneously places far too much weight on those, rather than effective and safe. The decision to use a particular treatment should be predicated upon empirical evidence, not slick marketing devices.

    You need to consider the substance of the matter, not the appearance.

    Agreed, but BioRay's (and the like) products are all show and no go.

    "I believe that your objection to the term originates from your being open to using unproven modalities but don't wish to acknowledge that you would be so pedestrian to do so."

    I thought I already answered you on that point.


    I didn't see how you answered this.

    cont...

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  17. As I am sure you know, there are many different levels and strength of evidence, so it does depend on how much evidence you are comfortable with. Some people want randomized, placebo controlled trials while some people would be happy just with a specific doctor's educated opinion - and then there is everything in between.

    A doctor's educated opinion sans replicated clinical studies is not evidence-based, regardless of whether you or someone else wishes to construe it as such. I would say the same thing with regards to many pharmaceuticals too. Evidence-based isn't a sliding scale dependent upon individual comfort. It's not, "oh hai, this sounds good to me and it's recommended by a doctor who took a weekend course on autism". I understand your statement to be rather apologetic and tractable in order to be able to accommodate anyone's biases.

    And, no, it wasn't an "appeal to authority" but rather a factual statement. If one of the several medical professionals who are involved in treating my children makes a suggestion for a treatment and they have a basis for that statement then we are likely to follow their advance.

    For example, a developmental pediatrician tested my children's zinc and iron levels and found that they were deficient in both. He suggested that we give them daily zinc and iron supplements to raise their levels and we did. As a result they are no longer as deficient in iron or zinc, although they still have trouble maintaining their levels of both.


    A specific example is helpful. No rational person is going to disparage you for this, quite the opposite actually. This is not woo. As an aside, if they are having difficulty maintaining these levels, have you either a.) looked at the bioavailability and dosages of the supplements that you are giving? and/or b.) Probed for metabolic disorders that might account for this observation? I don't desire an answer, this is just some food for thought and hope that it doesn't sound patronising.

    To me, that is evidence based even though I have never seen any formal study that demonstrates that oral iron or oral zinc supplementation can raise the respective nutrient levels. Would you consider that evidence based or not?

    Ah, don't confuse what you don't know with what is unknown. There are copious data regarding oral supplementation that your physician is, no doubt, aware of. But more importantly, you are not self-dosing, it is under medical management. So the short answer is yes, I consider this course of action evidence-based.

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  18. Hi Science Mom -

    A doctor's educated opinion sans replicated clinical studies is not evidence-based, regardless of whether you or someone else wishes to construe it as such. I would say the same thing with regards to many pharmaceuticals too. Evidence-based isn't a sliding scale dependent upon individual comfort.

    and

    Ah, don't confuse what you don't know with what is unknown. There are copious data regarding oral supplementation that your physician is, no doubt, aware of. But more importantly, you are not self-dosing, it is under medical management. So the short answer is yes, I consider this course of action evidence-based.

    I respectfully disagree with your first point, and would use my personal experiences towards zinc suppplementation in our son as a reason why, in fact, evidence need not be comprised of replicated clinical studies. They're best, of course, but not necessarily mandated.

    This is a difficult path for me to tread; the discussion is already somewhat meandering, but I do think that you have inadvertantly described a portion of why some people have gone to DAN doctors, and eventually, why some may have embarked on treatment paths with less than sound grounding in evidence, or indeed, have fostered a deep mistrust of the mainstream medical community.

    The only people willing to test your child for things, even simple things, like zinc deficiency, are DAN doctors.

    If you ask your pediatrician for a blood test for minerals you might get one, but you are very, very unlikely to have one recommended to you. You are just as likely to be told that there is no reason to run such a test.

    This may be changing some (?), but four years ago, when my son was diagnosed, our run of the mill pediatrician offered absolutely nothing for us. He was facing an array of terrifying problems, chronically self injurioius (head banging 30 / 40 times a day), he had literally chewed all of his fingernails off, did not speak, offered no eye contact, was aggressive towards others, had no concept of potty training, and was alternating between diarheah and constipation, but never, ever normal stools.

    One thing in particular we asked our pediatrician about was his constant biting of fingernails. His doctor, a nice enough guy, recommended behavioral approaches; i.e., soak his fingers in something that tastes poorly. What a joke, our son was a tasmanian devil of activity and reacted violently to being restrained, or in many cases, touched at all.

    At our first DAN appointment the doctor looked at his fingernails and told us our child was low in zinc; and probably high in copper. She claimed to have seen similar patterns in a great many children. She told us she had seens over a hundred children with autism, I have no idea if that was true, but we were on a waiting list for several months before we could get an appointment.

    We had blood drawn for tests, which indeed, showed very low levels of zinc. We started zinc supplementation, and within days, our son stopped biting his nails. If it was a coincidence, we absolutely welcomed it with open arms. Bring it on!

    . . .

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  19. . . . continued

    Our DAN doctor at the time predicted that our son's zinc levels would be below normal, and indeed, that copper would be paradoxically high [it was]. There was very, very little in the literature which might conform to a biomarker study in this regard, much less repeated studies. There was this:

    http://onlinelibrary.wiley.com/doi/10.1002/jtra.20002/abstract

    And subsequently, this paper, which also measure copper and found the same inverse relationship we saw in our son's bloodwork in 2006.

    http://www.ncbi.nlm.nih.gov/pubmed/19280374

    This speaks towards the problems of appropriately quantifying strength of evidence. I believe our DAN doctor had run red blood cell element tests on hundreds of children with autism, and had seen with regularity decrased zinc levels, and this was the only reason his zinc levels were tested. I am not sure where this type of 'evidence' fits within your model. (?)


    I've come around to the idea that the shotgun approach that some DAN doctors take is a shitty idea; and indeed, some of the treatments they propose or sell have very little biologically plausible mechanism, or perhaps, have mechanisms that work in very tiny subsets of children by accident; i.e., hitting a different target than they think they are. Some children are likely being changed in ways we cannot predict, or in fact, hurt. But a lot of parents I have spoken with have experiences that mirror my own, absolutely no help from mainstream doctors, and observed tangible results from alternative sources.

    In the case of something far, far removed from the DSM, constant nail biting, a simple blood test and supplementation coincided with a ceasation of behaviors that had been ongoing, every day, sometimes every hour, for months. The decision to test for the deficiency was based on nothing more than personal experience. And we were left wondering to ourselves, why didn't our pediatrician know this? The answer was, there was almost nothing in literature on this, the only people who knew, were people who were running tests on lots of kids with autism. That DAN doctor likely fit some of the criteria of a woo practioner as described by Kim (never read the full post), but she was also right; at least about some things.

    Until we can come to a place where parents do not have to seek out alternative practioners to have these kinds of simple things evaluated for and treated, the woo meisters will continue to have patients.

    I don't know how to accomplish this; there aren't any easy answers. There are good reasons to be outraged at some practices behing promoted, but at the same time, the discussion frequently becomes vitriolic and embraces broad generalizations, and in those instances, the advocates of proceeding with a firm basis in evidence and caution may lose the new autism parent who has observed changes in their child.

    - pD

    [sorry for being so long! plus, blogger is acting up - MJ if this double posts, nuke one.]

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  20. Science Mom,

    "Natural implies better, safer, but has no particular relevance when it comes to safety or efficacy"

    Just to quibble about the safety part, I would say that an organically produced product - assuming that it really is produced in a proper organic fashion - is likely to be cause less problems and as a result be safer than a comparable non-organic product.

    Products with a proper QA and testing regimen are likely to be safer as well. An example would be the contamination issues that Kirkman had earlier this year. Although I would agree that that organic or natural doesn't imply that it works better.

    "Emphasis mine. I absolutely agree with this statement and if you do adhere to your own criteria, you should too."

    Its funny how different people focus on different parts of the same thought. I focused more on the gimmick part while you focused on the safety and efficacy.

    "Sure BioRay qualifies their organic status and GMP status..."

    But that is still a step up from the a good part of the supplement industry that doesn't even bother to go that far.

    "The utilisation of 'organic' and 'natural' are empty qualifications ..."

    They can be, yes, but you have to look for the substance and not cry "woo" at the first sight of the words "natural" or "organic".

    "The decision to use a particular treatment should be predicated upon empirical evidence, not slick marketing devices."

    That is basically the point of my post.

    "Agreed, but BioRay's (and the like) products are all show and no go"

    That is too much of a generalization for me. I am not defending this company's products but I would not be willing to say that they are all worthless without taking the time to look at them.

    "I didn't see how you answered this."

    This was my answer -

    As for venturing outside "evidence-based" treatments, that depends on your definition of evidence. Every single thing we have tried with our children has been because a medical professional with the appropriate pedigree has recommended it OR there is sufficient evidence for us to think - based on the criteria above - that the treatment will work and involve an acceptable risk.

    "A doctor's educated opinion sans replicated clinical studies is not evidence-based, regardless of whether you or someone else wishes to construe it as such."

    I would disagree with you there. A doctor's expert opinion can be considered evidence-based, of course depending on the doctor. I wouldn't take a random doctor's word for it but if a mainstream specialist in a field gives his/her opinion on a topic from their field, I think it has a certain weight. Not as much as a proper clinic trial but certainly more than a parental anecdote.

    "I understand your statement to be rather apologetic and tractable in order to be able to accommodate anyone's biases."

    Not really, no. I think if you look back and other things I have written on this site it should be clear that I don't just accept everyone's opinion.

    "This is just some food for thought and hope that it doesn't sound patronising."

    I never mind helpful suggestions. The short answer is those deficiencies paired with other problems with basic nutrients leads me to believe that they do have some sort of problem in that area. But after extensive poking and prodding we can't find anything specific.

    However, we have had some success with biomed (such as zinc,iron, and other things) in correcting the problems. And, possibly as a happy side effect, we have also seen some improvements in the core of their autism symptoms as a result. It may be a co-morbid condition or it could be the root cause of their autism, who knows.

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  21. pD -

    I hope I got the correct comment, Blogger likes to complain about comments being too large even when they aren't. And don't get me started on the "Request too large" message you get half of the time when you post a comment or the spam filter...

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  22. "The utilisation of 'organic' and 'natural' are empty qualifications ..."

    They can be, yes, but you have to look for the substance and not cry "woo" at the first sight of the words "natural" or "organic".

    I don't believe Kim was doing that. I interpret it as, "don't be snookered by the use of 'organic' and 'natural' in the absence of safety and efficacy data. Take their NDF for example: http://www.bioraynaturaldetox.com/store/product-detail.aspx?id=9

    They claim that it is organic, but no certifying agency is listed, next, even if it is organic, that doesn't mean that there isn't the presence of metal contaminants, only molecular distillation of the culture water will remove those. But most importantly, where is the safety and efficacy data? We know that chelation is a bogus 'treatment' for autism and we know that chelators aren't specific for just the 'bad' metals, they scavenge essential trace metals too. So at best, you have expensive algae water and at worst, you could be leeching essential nutrients from your child's system. Either way, it's woo.

    "Agreed, but BioRay's (and the like) products are all show and no go"

    That is too much of a generalization for me. I am not defending this company's products but I would not be willing to say that they are all worthless without taking the time to look at them.

    Alright, look at any of BioRay's (or pick another) products. Why lead in with Organic! Natural! with vague claims of what they 'treat' rather than what they are, what they do and the literature citations? In other words, if the fact that they are organic and natural are their lead-ins, they are probably woo.

    I know there is more but I am a victim of the silly season and still haven't responded to pD's post. It's been interesting.

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