Friday, April 06, 2007

If Everything works, is Anything Working?

A few weeks ago, I wrote about ARI’s parental survey and how that could be used to show the natural progression of untreated autism. Today, I’d like to delve a bit deeper into some of the implications of all of those “effective” (or not) treatments.

Even with the caveats previously noted about the shortcomings of the survey results, one thing that can certainly be said is that a rather large number of therapies are felt to be effective in the treatment of autism. Picking a threshold level of 10:1 on ARI’s “better:worse” scale (see previous posting for a discussion on this), the following treatments are felt to be “effective”:


Antifungals: Diflucan
Antifungals:Nystatin
Calcium
Candida Diet
Cod Liver Oil
Detox.
(Chelation)
Digestive Enzymes
Fatty Acids
Feingold Diet
Folic
Acid
Food Allergy Treatment
Gluten- /Casein-Free Diet
Removed
Chocolate
Removed Eggs
Removed Milk Products/Dairy
Removed
Sugar
Removed Wheat
Rotation Diet
Vitamin A
Vitamin B3
Vitamin B6
with Magnesium
Vitamin B12
Vitamin C
Zinc


Again, even if these treatments aren’t actually effective (and most, if not all, probably aren’t), this still speaks to the dizzying number of treatments that parents are claiming work to treat autism.

Now, I’ve read the chelationista apologists’ hypotheses of how all (or most) of these treatment “successes” can be explained by mercury poisoning, but I’m still waiting for the data. “Could be explained…” is a long, long way from “Is explained by…” – despite what many of the chelationistas might wish.


So, we have a large number of treatments with no discernible connection that are all reported to be effective in the treatment of autism. And that’s if we apply a pretty high cut to the pack.

And what does it usually mean when a disparate group of treatments are all felt to be effective for a single disorder?

[1] The disorder isn’t a single entity; it’s a group of several disorders with similar presentations (but different causes and underlying abnormalities).

[2] None of the treatments is effective, which is why so many of them seem equally effective. Placebos all trend toward the same degree of effectiveness with prolonged use.

[3] Both [1] and [2] are true.

Case [1] is what we saw up to the late 1800’s in the treatment of “fever”. A variety of different (and usually unrelated) treatments showed true effectiveness, but only in certain patients. Quinine worked for some, willow bark for others but it wasn’t until modern microbiology developed that we understood why (it wasn't until the late 1900's that we understood how willow bark actually worked).

Case [2] was widely seen up to the early 1900’s, when not only a variety of treatments but also entire treatment philosophies had relatively equivalent efficacy. Homeopathy, naturopathy and chiropractic were equally as effective (or equivalently ineffective) as “mainstream” medicine of the time. It was only when “mainstream” medicine developed safe and effective treatments and medicines that it began to show a distinct “edge” over the others in effectiveness.


It is only fair to say that some of the myriad of “alternative” autism therapies may eventually be shown to be effective in a subset of autism – or whatever autism fragments into in the future. All that can be said today is that the few “alternative” treatments that have been studied in a scientific manner have been found wanting (e.g. secretin).

You would think that, having seen secretin burst onto the scene, become wildly popular (with countless anecdotes of success) only to crash and burn when it was tested, that the others would be somewhat more cautious in their claims.

But it hasn’t worked out that way. The pattern to date has been one of over-ambitious claims (one might even say hyper-inflated claims) followed by dozens of testimonials and speaking engagements, then disappointment, retrenchment of the “true believers” and eventual consolidation into a core of die-hard followers.

In a way, it reminds me of the evolution of a white dwarf star.

http://imagine.gsfc.nasa.gov/docs/science/know_l2/dwarfs.html

The sad thing is that the people in the middle of it all – the poor parents – don’t have the historical perspective to see it coming (or they are assured, “This isn’t like secretin – our treatment really works!”). So, they are either consumed in the inflationary helium burning stage, blown out with the planetary nebula or remain as the white-hot core of “true believers”.

Oh, if they could only know and believe the history of such things!

Here is another point to ponder.

“Mainstream” medicine is not a very fastidious entity; it will absorb anything that works, regardless of its history. When H. pylori was found to be a causative agent in stomach ulcers, “mainstream” medicine gulped it up without so much as a “by your leave”. The same thing has happened time and again – whenever “alternative” medicine comes up with something that really works, “mainstream” medicine takes it, like a schoolyard bully taking a ball.

Poor “alternative” medicine is left with the dregs – the therapies that don’t work or haven’t (yet?) been shown to work. To take the bully analogy a bit further, they are left with the broken toys and the ones they can’t figure out.

My point is this: if these therapies actually worked - if they could truly be shown to work – then they wouldn’t be “alternative” anymore. “Mainstream” medicine would have scooped them up and claimed them for itself.

Maybe that’s why the “alternative” practitioners won’t release their data – they’re afraid of the playground bully: “mainstream” medicine.

So, to get back to the title of this post, if there are so many disparate "therapies" that "work", what does that tell us in the absence of any hard data? Again, if everything works, then it is all too likely that nothing is working and we are simply seeing the unaltered natural course of the disorder.

We have some hint of this in that many of the "alternative" autism practitioners are still using secretin (again, a therapy very thoroughly discredited in the treatment of autism) and claiming that "it works!". If secretin - which is no more effective for autism than placebo - works as well as the rest of their "therapies", well, that's all we need to know.



Prometheus

16 Comments:

Anonymous Anonymous said...

Obviously, you have failed in your research. Treatments for autism are widely available, especially for children. I don't see how you can fail to note the success of removing "toxins" via the feet.

http://nutritionworld.biz/

http://www.reikitoronto.com/detox.htm

http://www.villagehealing.ca/ioncleanse.htm

http://www.reachagoal.com/id29.htm




I don't know why autistic adults cannot be helped with these treatments, though.

06 April, 2007 15:30  
Blogger Prometheus said...

Anonymous,

I'm not sure if your post is meant to be taken seriously or not. Unfortunately, the "alternative" autism therapy world is so "over the top" that it is hard to tell when somebody is making fun of it.

On the off chance that you're serious, I'll simply reiterate that there is no shortage of proposed "treatments" for autism, just a shortage of data showing that any of them have worked.

And the ones that do have data? It shows that they don't work.

If, on the other hand, you're trying to be wry and satiric, I did laugh when I first read your post, but then it occurred to me that you might just be serious.

Sorry.

Prometheus

06 April, 2007 16:19  
Blogger María Luján said...

Hi Prometheus
I will present a summarization about for what the list you did works- considering the published literature and Doctors in practice vademecum and any peditrician you consult:
Candida positive in FS and problems with gut flora (such as in transplanted people or immune depressed or even neonates with intubation):
Antifungals: Diflucan
Antifungals:Nystatin
...for Candida overgrowth
Calcium
...for Ca deficiency
Cod Liver Oil
...for vitamin A as cis retinol tested deficiency
Detox.
(Chelation)
for heavy metal poisoning/wilson or Fe bioaccumulation
Digestive Enzymes
for lack of digestive enzymes
Fatty Acids
for FA defficiency
Feingold Diet
, this is controversial;
Salycilate allergy is listed as a problem to begin with- Long to comment.
Folic Acid
..for celiac disease- generally CD is present with folic acid defficiency
Gluten- /Casein-Free Diet
Removed
...for gluten allergy /intolerance ( including CD) and milk allergy (lactose or casein allergies, both able to be properly detected)
Chocolate
.. because of the relation with allergies-many people has chocolate allergy and relation with migraines
Removed Eggs
...if there is egg allergy. Egg allergy is listed in several places as a problem in susceptible people
Removed Milk Products/Dairy
Removed
please see above
Vitamin B3
..for vitamin B3 deficiency
Vitamin B6
...for vitamin deficiency
with Magnesium
...for Mg deficiency
Vitamin B12
..for vitamin B12 deficiency
Vitamin C
the same
Zinc
the same

MAny children with autism have concomitant medical problems-CMP
Are these "treatments for ASD"? NO
Are these treatments of some CMP that can be properly tested/diagnosed/detected/treated? Yes
Are these treatments going to "cure autism"? NO
Is it a problem to consider the treatments of some CMP as "treatments of Autism"?Yes
Is it a problem to consider that CMP are not affecting autistic children well being? Yes

I do think that we need a different, equilibrated view of the situation, nor "yours" or "theirs".

06 April, 2007 16:39  
Blogger daedalus2u said...

It is very simple. The reason all of these treatments "work", is because they are all placebos, and since ASDs are a consequence of low nitric oxide, and the placebo effect works by raising nitric oxide levels.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15874901&query_hl=6&itool=pubmed_docsum

When you have a disorder that is characterized by low nitric oxide, it is particularly sensitive to the placebo effect.

When you compare these placebo treatments against other placebos, they fair about the same (I would predict).

There is also the wishful thinking effect, where parents perceive their children to be getting better because they want to see them getting better. So you have children getting "better", for years on chelation therapy,, but never quite being "cured", until the parents run out of money.

Meditation can raise NO levels too.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16369463&query_hl=12&itool=pubmed_docsum

Which also reduces some symptoms of the metabolic syndrome:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16772250&query_hl=10&itool=pubmed_docsum

Of course, other methods of increasing NO might work too.

06 April, 2007 17:58  
Anonymous Ms. Clark said...

"When many cures are offered for a disease, it means the disease is not curable" -Anton Chekhov

I haven't checked to see if it's a true quote, but that's what the mom has on her signature line.

06 April, 2007 18:04  
Blogger mcewen said...

I'm no scientist, but I suspect from the two autistic children I know quite well, that if their diet is atrocious, then quite small changes can yield great benefits, as they would for anyone who expanded from a mono diet.
In fact if anyone could tell me what the 'one' perfect food is then I'll give up all this dietary stuff and stick with that one.
Cheers

06 April, 2007 18:32  
Anonymous Judy Wyatt said...

@anonymous:

The television News3 program in Las Vegas "failed to note the success of removing "toxins" via the feet"

http://www.kvbc.com/Global/story.asp?S=6095483&nav=menu107_2_6

The machine produces its own rust. Whether there are any feet in the water or not. But you can believe that "toxins" (whatever they are) are being released from the body by this magical foot bath. I'll bet it feels real nice, though.

06 April, 2007 23:18  
Anonymous isles said...

I guess people are attracted to "alternative" medicine in spite of its lack of demonstrated efficacy because they are soooooo special and have very special bodies and very special needs; therefore, just because something doesn't work for a member of the ordinary rabble doesn't mean it won't work for them. Especially when it's prescribed by a practitioner who says s/he is concocting this therapeutic regimen just for that one special patient.

Eye of newt, anyone?

07 April, 2007 07:11  
Blogger Prometheus said...

Maria,

I'm sure you had a point in there somewhere, but I couldn't see it. It appears that you're trying to say that a number of these "therapies" have legitimate medical uses - which is true for most of them.

Certainly, autistic children (and adults) can have medical conditions in addition to their autism and that would require the use of therapies that have been shown useful in treating those conditions.

However, this does in no way support the use of, for example, diflucan in the treatment of autism because autism is presumed to be due to "yeast". Demonstrate a clinically relevant yeast infection (in a strain that is susceptible to diflucan) and then initiate treatment.

My favorite (or most appalling) example of this sort of "circular non-reasoning" was a quote from one of the "alternative" autism therapists, who said:

"I test all autistic children for yeast. If they come up positive, I treat them with Diflucan for a month and Nystatin for a year. If the test doesn't show yeast, I treat them anyway, since the test often misses yeast infections in autistic children."

Any questions? I may 'blog further on that sort of "reasoning" in the near future.


Daedalus2u,

I'd appreciate hearing about any data you have showing that autistic children (or adults) have low NO levels. This seems to be an idee fixe of yours, with nearly every post I've seen from you expounding on how NO is responsible for nearly everything.

It is not surprising that a cell-signally molecule like NO would be involved in a wide variety of processes, but I think that you have yet to demonstrate that it is a cause or even a significant effect of autism.

If I've overlooked some vital bits of data, please let me know.

McEwen,

Too right! I often wonder how much of the effect of "therapies" like vitamin A, vitamin C, vitamin B12, B6, B-whatever and the lot have to do with treating the effects of the eccentric diets frequently reported in autistic children.

The classic is, of course, Bernie RImland's (in)famous vitamin B6 and magnesium, which he touted from the early 1970's until his death last year. Assuming that it actually had an effect (as opposed to acting as a placebo), it may well have been to correct the results of an atrocious diet. In one child or perhaps a few children.

Dr. Rimland then - in rather classic American fashion - assumed that "if one is good, two hundred will be better" and initiated the "megavitamin" craze in autism "therapy".


What many of these "therapies" have in common is that they "worked" in one child (e.g. secretin) or a few children and were then sold to the community of parents as a "cure" for all autism. Or, at least, as something that every parent had to try if they wanted to be sure that they were doing "everything they could to help their child".

Another thing that most (or all) of these "therapies" will also have in common is that - when they are adequately tested - they will fail to be better than placebo (which, according to Daedalus2u, means that they work by increasing NO production - oi!).

I'm not using my crystal ball to make these predictions of failure, however. Most of these "therapies" have been around for years. If they were as dramatic as they were touted to be, they would have been subsumed by "mainstream" medicine long ago.

Additionally, despite numerous claims, testimonials and spittle-spraying diatribes, none of these "therapies" has exactly taken off. If there was a therapy that worked well for the majority of autistic children (or did wonders for a smaller subgroup), there would be no stopping it.

Yet, none of these therapies has even reached the level of excitement and hype that secretin got in its heyday. And secretin is no better than placebo for autism - an undeniable fact.


Prometheus

08 April, 2007 07:53  
Blogger María Luján said...

Hi Prometheus
You said
However, this does in no way support the use of, for example, diflucan in the treatment of autism because autism is presumed to be due to "yeast". Demonstrate a clinically relevant yeast infection (in a strain that is susceptible to diflucan) and then initiate treatment.

and I agree completely with you. I have the same problems with
a- The introduction of "all these" as "treatment for autism" as "cures" looking at the concomitant medical problem as "CAUSES" - with proven clinical data or supposed ones because "all the autistic children have them"
b-the lack of the clinical accepted proofs of the need of these therapies.

I do not see disagreement in these points. However, I consider that IF these situations are present under proper testing-under the known standards of for example strains resistant to fluconazol and other known testing in these cases-; there are several; the proper treatment would be affecting positively well-being.

08 April, 2007 09:13  
Blogger Another Autism Mom said...

Hi Prometheus and María,

I do believe there's a subgroup of autistic kids with a compromised immune system. More serious studies are now being done to map out the different autism phenotypes and how they affect individuals in each case.

However it makes me cringe when I hear that DAN! doctors are prescribing the same treatments to all kids in their practice even when their tests come back negative for what María calls CMPs. María, I understand you live in Argentina; I don't know if they have DAN! doctors in your country yet, but here in the US they're a big influence misguiding parents with all their dubious and sometimes dangerous treatments. What's worse, parents convince other parents that the only way to go is through a DAN! doctor. They say the regular pediatricians will never take care of the CMPs that your autistic child may present. Which is a lie. My son's pediatrician tested my boy for everything - candida, allergies, immune defficiecies - and his results came back normal. But if they hadn't, he'd surely prescribe the correct and safe treatment.

08 April, 2007 09:16  
Anonymous returning anonymous said...

Prometheus,your first impression was correct for my intent. I figured toxins in quotes would be a large clue to that, if nothing else. I am sure your exposure to scientifically dubious treatments and their supporters is at least an order of magnitude greater than mine. You have my great respect.

08 April, 2007 11:01  
Blogger daedalus2u said...

Prometheus,

I have sent you some material by email. As I have posted elsewhere, I subscribe to the Stephen J, Gould definition of "fact", that is:

In science, fact can only mean confirmed to such a degree that it would be perverse to withhold provisional assent. I suppose that apples might start to rise tomorrow, but the possibility does not merit equal time in physics classrooms.
--Stephen Jay Gould

That is where the "low NO hypothesis" of ASDs is in my mind.

Getting all the "data" that I am relying on into a form that others can understand it is difficult and time consuming, but I am working on it.

08 April, 2007 15:19  
Blogger Jamie said...

My comment to this when it was posted seems to have gotten eaten, I'm not quite sure why I am having trouble replying, but I will try again.

I would love to see you, or another skeptic like Orac or whatnot, take on dietary options like Feingold and Failsafe.

Someone above mentioned Salicylates, which is a focus of Failsafe, which is a refined and expanded version of the Feingold diet. Neither of them, in any way, purports to be a 'cure' for anything, so much as one building block in a larger treatment regime, specifically in regards to behavioral management.

I'd like to see this because, while I am a generally skeptical person, I have been unable to deny that Feingold and Failsafe have definite impact on children's behaviour, and indeed in my partner's behaviour. But I know that is is /not/ a cure-all, or effective for everyone; it doesn't do much of anything for me, in fact.

A bit of history. My partner and I have been together 10 years, and we have two children. We have both always been believed to be borderline ADHD (I say borderline as it has, sadly, become a very diluted term) and as a child, my partner was raised on the Feingold diet (Very 'new' in the early 80's ).

So, when our kids started exhibiting concentration, bladder control, and other issues, one of the first things she reverted to was diet restriction, cutting out salicylates (I can't spell that word. :( ) and other things. And I had to admit, the difference was amazing.

Within days, both we and our son's daycare proctors saw a difference; it wasn't just psychosematic, as we hadn't actually told our son's teachers that we were trying something new. Likewise, giving him something from the 'banned' list was a very risky thing that tended to make him very irrational and cranky.

At that time, we lived in the US, and we had a high degree of flexibility with things, a fair bit of give in how much we could push the limits. Once we moved back to Australia, to where the overall allergy load is /much/ higher, we have found that the slightest straying from the diet (Which happens pretty regularly, I admit) will have a noticible impact.

Things got more interesting for us in the last year. My son was set to start prep last year (Something like US kindergarten, only more advanced. Kind of K.5 you could say), but when his school evaluated him, they felt that while his intelligence was extremely high, his social development was very low, and they requested we wait a year so his social development could 'catch up'.

Well, a year passed, and in that time we focused on his social development, doing what we could to help him, but it was a struggle. And when he started Prep this year, because of the way the laws worked out and the ages, he was in a class with kids close to two years younger than him. And yet he was, hands down, the least socially developed kid in the class.

After two weeks, in which he was completely overwhelmed with anxiety, lashing out violently, and otherwise srtuggling, we had a sit down with the school; they suspected he has Asperger's, a mental condition in the Autism sphere (I personally refuse to call it a disorder, because I very much believe that the pros outweight the cons in many ways).

This was an eye opening thing for us as we started researching a condition we'd only vaugly heard of. Our son hit pretty much every criteria in the DSM IV, albeit mildly, for diagnosis. It was also shocking to see just how many of the symptoms that alwas reminded me of my own childhood were stereotypical Aspie traits.

We have since all been evaluated, by very talented and respected psychologists and psychiatrists, and it's pretty much a given that I am also an aspie.

So why does diet help with my son's behaviours and not mine? Well, for one thing, he has a history of food allergies. We discovered early on, when he was about 6 months old, that was was anaphylactic to peanuts. So he inherently is carrying a higher histamine and allergy load than I am; all I ave is seasonal allergies a few weeks a year when spring changes to summer, and summer to autumn. Also, he has less body mass with which to handle an allergy, while I have, umm, considerably more body mass than I need.

There are probably other reasons. My partner is almost as sensative as our son, so it's possible he gets it from her. It's hard to say.

I've strayed a lot off topic here, so I will wrap up. =) I believe that the chances are, few of the 'therapies' listed above will have a major impact on Austic children. That said, I think dietary management can be a /huge/ benefit, especially in dealing with some of the more extreme behaviors like violence, concentration, and stimming.

Bear in mind that with food additives, the FDA does /not/ take behavioural impact into account. In fact, they have no mandate to do so at this point. All they care about is 'will it kill people?' when it comes to food additives. As we see with things like calcium propionate , plenty of really nasty things can get past that and be perfectly legal and common. So I find that people that follow Failsafe and Feingold also /generally/ have much healthier diets, because to avoid those additives, you have to have a much higher focus on fresh and natural foods, over prepacked, microwaved, preservative and sugar and coloring laden foods that aren't healthy to /begin/ with. As someone on another blog (Or was it this one? I forget!) said, any food that has to claim to /be/ food, /isn't/ food.

I think that's enough for now. To sum up, I hope that you or a compatriot will take on elimination diets and give a skeptics take on them. I know Sue Dengate, who authored the Failsafe diet with her husband, would probably cooperate fully in the research.

I know that one family doesn't define whether something works or not. But it did work for us, and it has worked for many others. There is more to food and addatives than we know about. We see it all the time; look at Jamie Oliver's experiment at putting 'real food' in UK schools, and the behavioural changes they noticed in those children; he wasn't following Failsafe or Feingold specifically, but he was mirroring a lot of what they are.

We need scientific studies done on this. Because I am sure that once these studies are done, people will be shocked at what things make their kids 'bounce off the walls'.

Oh, and in regards to the question 'Why, then, don't more doctor's espouse them?', well. When we started this, we talked to a couple doctors about it. Those that had heard of Feingold and Failsafe's reply amounted to 'Oh, yes, we know they work and do wonders, but it's such a big lifestyle change that we don't think people will be able to do it, so we push drugs instead'. It's disgusting... but it's probably also true. Having to make chips from raw potato takes a lot more effort than snipping open a bag of frozen chips and dumping them in the fryer. And while everyone will agree that fresh, baked chips are healthier than the corn syrup enriched frozen ones, they still balk at changing, because it's just /easier/ to be unhealthy. :(

WAY over limit here, so really, done. I hope you reply. I hope this goes through. Thanks for your time, consideration, and a thought-provoking discussion.

08 April, 2007 22:30  
Blogger WHISKEY PUZZLER said...

gr8 job u'v done MR/MRS:photon in the dark, thats so unseen, but looks like ur work reflects who u r!

09 April, 2007 15:24  
Blogger Prometheus said...

Jamie,

If your previous comment was as long as this one, the system may have rejected it for length. As it was, I had to "rescue" this one from the "reject" basket.

As for the Feingold and other such diets, there is little good data to support them. Of course, the lack of data doesn't mean that they don't work, just that there is no data.

Part of the problem with studying dietary interventions is that it is so darned hard to make sure that the things you are trying to eliminate don't creep back into the diet. This is especially hard with something like the Feingold diet, where the "something" that you're trying to eliminate is often somewhat vague.

I've seen only a few good dietary studies and they all relied on a laboratory kitchen - which few universities have - to prepare the meals. This is also a very expensive and time-consuming proposition for everyone involved. As a result, most diet studies are of low reliability, especially if they are trying to eliminate a substance from the diet.


Whiskey Puzzler,

Thanks, I think. Maybe you ought to ease off a bit on the whiskey - it seems to be affecting your typing.


Prometheus

09 April, 2007 16:05  

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