A Review of Discover’s Autism: it’s not just in the head
Overview
“Autism: it’s not just in the head” contain reference to real science and some careful and respectable theoretical statements. It also includes errors of fact, a lack of a skeptical perspective, and defense of credulity.
Introduction
In the April 2007 edition of “Discover”, Jill Neimark presents a thesis that autoimmune and gastrointestinal issues cause the differences in the brain in children with autism. Anecdotes and interviews from doctors and parents who theorize such a connection are given in support of this view.
Review of Graphics
The author offers picture of a distended stomach of a child with autism, and claims that such are comment with children with autism. A claim not supported by well designed research.
The author offers a graphic of Texas comparing the counties with the highest toxicity and the rates of autism. Seemingly these are special education data, of assignment to the autism service category and not recordings of actual cases.
The author offers us two samples of handwriting of a home-schooled autistic child taken a month apart, before and after a child started treatment with antifungal medication. However, the author does not offer us multiple samples let alone a month’s worth of samples. We have no idea of the conditions at the time of these writing, whether the child was hurrying to get the former done in time for a favorite show or activity. These factors would be good to know.
Review of Article
In the article begins with a quote from a mother of two autistic children. I relates to her suicidal thoughts upon learning that her second child also met criteria for autism. The anecdotes of suicidal thoughts of mothers of autistic children has recently been popular making several appearances in documentaries or written work where the mothers advocated a vaccine etiology of autism or a specific treatment modality.
The author writes “and a 2003 report by the Center for Disease Control suggests that as many as one in every 166 children is now on the autism spectrum, while another one in six suffers from a neurodevelopmental delay.”
However the 1 in 6 statistic includes autism as well as other disorder. Furthermore, these disorders include thing like Attention Deficit Hyperactivity Disorder, which are not delays, but disorders or differences. Moreover, 1 in 6, corresponds to 16%. This is the percentage, equal to or below one standard deviation from the mean in a normalized curve. In terms of a given measure such as adaptive behavior or academic achievement, I should (based on the statistics) expect that 1 in 6 children to be at least 1 standard deviation below the average. The confusion here is similar to the confusion that leads to shocked outcries, when it is revealed that ½ of the population perform below average on an IQ test.
Further, it is worth mentioning that many of the advocates of alternative treatments in autism or the vaccine etiology of autism are inconsistent as to whom this 1 in 6 applies to. It can range from describing brain disorders to asthma and food allergies depending on the source.
Another doctor, Martha Herbert states “In spite of so many years of assumptions that a brain disorder like this is not treatable, we’re helping kids get better. So, it can’t just be genetic, prenatal, hardwired, and hopeless”.
It should be asked here for what studies show that any biomedical treatment improves the quality of life for children meeting criteria for autism. At the moment there are no studies that indicate this, perhaps in the future this will change, but it seems that Dr. Herbert’s statement has moved ahead of the data.
In addition, more than one disorder that is genetic and pre-natal offer problems or complications that can be treated, outgrown, or overcome via medical treatment or education. The examples are too numerous to name. What is more, no one who has an even rudimentary familiarity with autism research in the last 20 years would call autism “hopeless”. This is a caricature or straw man fallacy, of those who advocate a theory of idiopathic or genetic etiology of autism.
Dr. Herbert goes on to state “On very striking piece of evidence that many of us have noticed is that when autistic children go in for certain diagnostic tests and are told ot to eat or drink anything ahead of time parents often report that their child’s symptoms improve – until they start eating again after the procedure.”
This statement is reminiscent of one by Dr. Krigsman, who advocates a biomedical treatment approach to autism and a gastrological etiology theory. The endoscopies he performs requires only clear liquid be drunk for a period before hand, so as to offer better vision during the procedure. He mentions that on such a clear liquid diet, the parents claim the child’s behavior improves. Such a diet is devoid of gluten or casein and is somewhat similar the gluten free and casein free diet that Dr. Krigsman advocates. It is notable that this diet did not show improvement in the only controlled study of the subject thus far (Elder et al. 2006). Moreover the majority of parents in the previous study couldn’t tell if their child was on the control diet or the GF/CF diet. Perhaps there are parallels to Hoover & Millch (1994) who found that after giving children artificial sweetener and telling parents it was sugar, the parents rated the children’s behavior significantly worse than controls.
The author mentions an emotional reaction reading the original 11 case studies by Dr. Kanner, the first person to organize autism under a given name. The author finds evidence of autoimmune and gastrointestinal problems within the original case studies. However, this is unfortunate as not every child in those case studies had either sort of problem. This seems like an example of shoe-horning or confirmation bias.
Furthermore, the correlation that struck many more professionals at that time was that many of the children had highly educated parents. This helped give birth to the cold-mother etiology of autism theory, which was propped up, for at least a generation by the lack of organized and consistent biological findings.
At another point Dr. Herbert say’s “I can’t think of it as coincidence anymore that so many autistic kids have a history of food or airborne allergies”. However, these findings are demonstrated within the research. Many typically developing children have a history of environmental allergies as well. Dr. Herbert needs to demonstrate that these occur more frequently in children meeting criteria for autism for this point to stand.
The author states that a ‘Copernican-scale” shift in under way in the world in autism. The author then goes on to site improvement of several children via chelation. The author may indeed by right. However, one may hope that if so, this theory like the theory of a heliocentric universe, will be propped up by excellent proof rather then the anecdotal proofs any faith healer of witch doctor could likewise provide.
The author later cites Dr. Jill James work tracking 8 nchidlren who were treated with folinic acid, trimethylglycine, and methyl-B12. Dr. James found that an increase in markers for methylation and glutathione production within the children. Which is good news, because the researchers theorize that autistic behavior may be related to oxidative stress which might be eliminated by treatment with the above named factor. Unfortunately one of those treatments has been assessed and found to not produce statistically significant results (Deprey et al., 2006). Perhaps these factor in combination will produce notable effect. We will have to see.
A particularly disturbing statement by the author summarizing a statement by Dr. Herbert is: “In other words treat now before the gavel of science strikes a final judgment which might be decades away”. And then the author gives examples of parents ding just that. It seems that the author has assumed what the science will eventually say. This looks like faith based reasoning, not actual logic or science. But, even if the author actually means that at the moment we don’t know what the science will say, but certain treatments anecdotally looks promising so they should be tried, is still poor logic. Some of these treatment are expensive and or dangerous. And even the lowest risk treatment that costs very little money such as the GF/CF diet still takes time and effort on the part of child, the parents, and sometimes that other siblings and grandparents. And diet based intervention are by definition restrictive and can be alienating.
Also, the author points out a anecdote from a mother who’s child broke out in welts after the child was no longer provided with milk. The mother states that is seems that the child was going through a detoxification reaction. The mother seems to have persevered and stuck to the restriction whereas other mothers might have stopped withholding milk or looked for allergens in whatever alternatives where being provided, such as soy milk. This reaction seems similar to what is called a “healing crisis” or “Herxheimer reaction” in alternative medical circles.
Late in the article the author refers to Dr. Yasko’s work concerning polyphorisms and methylation. The author states that Dr. Yasko “seems immune to controversy”, which is a very interesting statement to a skeptic. The author quotes Dr. Yasko (on her decision to focus on treatment rather the scientific publication) as saying “I was on those cliffs you see in the movies and you’re going to jump. You don’t know if there is water below, or enough momentum to get to the other side, but you just jump.” One rather hopes there is enough momentum or at least deep water and that no child will be hurt by Dr. Yasko’s decision to jump off the cliff.
The final statement of the article says “If we can crack the puzzle of autism and be clear about how we did it, that may have huge implications for other chronic environmentally triggered systematic illness. Autism may be a much-needed wake-up call to us all”.
It seems that the author will end as several others have done, will a canary in the coal mine simile.
“Autism: it’s not just in the head” contain reference to real science and some careful and respectable theoretical statements. It also includes errors of fact, a lack of a skeptical perspective, and defense of credulity.
Introduction
In the April 2007 edition of “Discover”, Jill Neimark presents a thesis that autoimmune and gastrointestinal issues cause the differences in the brain in children with autism. Anecdotes and interviews from doctors and parents who theorize such a connection are given in support of this view.
Review of Graphics
The author offers picture of a distended stomach of a child with autism, and claims that such are comment with children with autism. A claim not supported by well designed research.
The author offers a graphic of Texas comparing the counties with the highest toxicity and the rates of autism. Seemingly these are special education data, of assignment to the autism service category and not recordings of actual cases.
The author offers us two samples of handwriting of a home-schooled autistic child taken a month apart, before and after a child started treatment with antifungal medication. However, the author does not offer us multiple samples let alone a month’s worth of samples. We have no idea of the conditions at the time of these writing, whether the child was hurrying to get the former done in time for a favorite show or activity. These factors would be good to know.
Review of Article
In the article begins with a quote from a mother of two autistic children. I relates to her suicidal thoughts upon learning that her second child also met criteria for autism. The anecdotes of suicidal thoughts of mothers of autistic children has recently been popular making several appearances in documentaries or written work where the mothers advocated a vaccine etiology of autism or a specific treatment modality.
The author writes “and a 2003 report by the Center for Disease Control suggests that as many as one in every 166 children is now on the autism spectrum, while another one in six suffers from a neurodevelopmental delay.”
However the 1 in 6 statistic includes autism as well as other disorder. Furthermore, these disorders include thing like Attention Deficit Hyperactivity Disorder, which are not delays, but disorders or differences. Moreover, 1 in 6, corresponds to 16%. This is the percentage, equal to or below one standard deviation from the mean in a normalized curve. In terms of a given measure such as adaptive behavior or academic achievement, I should (based on the statistics) expect that 1 in 6 children to be at least 1 standard deviation below the average. The confusion here is similar to the confusion that leads to shocked outcries, when it is revealed that ½ of the population perform below average on an IQ test.
Further, it is worth mentioning that many of the advocates of alternative treatments in autism or the vaccine etiology of autism are inconsistent as to whom this 1 in 6 applies to. It can range from describing brain disorders to asthma and food allergies depending on the source.
Another doctor, Martha Herbert states “In spite of so many years of assumptions that a brain disorder like this is not treatable, we’re helping kids get better. So, it can’t just be genetic, prenatal, hardwired, and hopeless”.
It should be asked here for what studies show that any biomedical treatment improves the quality of life for children meeting criteria for autism. At the moment there are no studies that indicate this, perhaps in the future this will change, but it seems that Dr. Herbert’s statement has moved ahead of the data.
In addition, more than one disorder that is genetic and pre-natal offer problems or complications that can be treated, outgrown, or overcome via medical treatment or education. The examples are too numerous to name. What is more, no one who has an even rudimentary familiarity with autism research in the last 20 years would call autism “hopeless”. This is a caricature or straw man fallacy, of those who advocate a theory of idiopathic or genetic etiology of autism.
Dr. Herbert goes on to state “On very striking piece of evidence that many of us have noticed is that when autistic children go in for certain diagnostic tests and are told ot to eat or drink anything ahead of time parents often report that their child’s symptoms improve – until they start eating again after the procedure.”
This statement is reminiscent of one by Dr. Krigsman, who advocates a biomedical treatment approach to autism and a gastrological etiology theory. The endoscopies he performs requires only clear liquid be drunk for a period before hand, so as to offer better vision during the procedure. He mentions that on such a clear liquid diet, the parents claim the child’s behavior improves. Such a diet is devoid of gluten or casein and is somewhat similar the gluten free and casein free diet that Dr. Krigsman advocates. It is notable that this diet did not show improvement in the only controlled study of the subject thus far (Elder et al. 2006). Moreover the majority of parents in the previous study couldn’t tell if their child was on the control diet or the GF/CF diet. Perhaps there are parallels to Hoover & Millch (1994) who found that after giving children artificial sweetener and telling parents it was sugar, the parents rated the children’s behavior significantly worse than controls.
The author mentions an emotional reaction reading the original 11 case studies by Dr. Kanner, the first person to organize autism under a given name. The author finds evidence of autoimmune and gastrointestinal problems within the original case studies. However, this is unfortunate as not every child in those case studies had either sort of problem. This seems like an example of shoe-horning or confirmation bias.
Furthermore, the correlation that struck many more professionals at that time was that many of the children had highly educated parents. This helped give birth to the cold-mother etiology of autism theory, which was propped up, for at least a generation by the lack of organized and consistent biological findings.
At another point Dr. Herbert say’s “I can’t think of it as coincidence anymore that so many autistic kids have a history of food or airborne allergies”. However, these findings are demonstrated within the research. Many typically developing children have a history of environmental allergies as well. Dr. Herbert needs to demonstrate that these occur more frequently in children meeting criteria for autism for this point to stand.
The author states that a ‘Copernican-scale” shift in under way in the world in autism. The author then goes on to site improvement of several children via chelation. The author may indeed by right. However, one may hope that if so, this theory like the theory of a heliocentric universe, will be propped up by excellent proof rather then the anecdotal proofs any faith healer of witch doctor could likewise provide.
The author later cites Dr. Jill James work tracking 8 nchidlren who were treated with folinic acid, trimethylglycine, and methyl-B12. Dr. James found that an increase in markers for methylation and glutathione production within the children. Which is good news, because the researchers theorize that autistic behavior may be related to oxidative stress which might be eliminated by treatment with the above named factor. Unfortunately one of those treatments has been assessed and found to not produce statistically significant results (Deprey et al., 2006). Perhaps these factor in combination will produce notable effect. We will have to see.
A particularly disturbing statement by the author summarizing a statement by Dr. Herbert is: “In other words treat now before the gavel of science strikes a final judgment which might be decades away”. And then the author gives examples of parents ding just that. It seems that the author has assumed what the science will eventually say. This looks like faith based reasoning, not actual logic or science. But, even if the author actually means that at the moment we don’t know what the science will say, but certain treatments anecdotally looks promising so they should be tried, is still poor logic. Some of these treatment are expensive and or dangerous. And even the lowest risk treatment that costs very little money such as the GF/CF diet still takes time and effort on the part of child, the parents, and sometimes that other siblings and grandparents. And diet based intervention are by definition restrictive and can be alienating.
Also, the author points out a anecdote from a mother who’s child broke out in welts after the child was no longer provided with milk. The mother states that is seems that the child was going through a detoxification reaction. The mother seems to have persevered and stuck to the restriction whereas other mothers might have stopped withholding milk or looked for allergens in whatever alternatives where being provided, such as soy milk. This reaction seems similar to what is called a “healing crisis” or “Herxheimer reaction” in alternative medical circles.
Late in the article the author refers to Dr. Yasko’s work concerning polyphorisms and methylation. The author states that Dr. Yasko “seems immune to controversy”, which is a very interesting statement to a skeptic. The author quotes Dr. Yasko (on her decision to focus on treatment rather the scientific publication) as saying “I was on those cliffs you see in the movies and you’re going to jump. You don’t know if there is water below, or enough momentum to get to the other side, but you just jump.” One rather hopes there is enough momentum or at least deep water and that no child will be hurt by Dr. Yasko’s decision to jump off the cliff.
The final statement of the article says “If we can crack the puzzle of autism and be clear about how we did it, that may have huge implications for other chronic environmentally triggered systematic illness. Autism may be a much-needed wake-up call to us all”.
It seems that the author will end as several others have done, will a canary in the coal mine simile.
Conclusion
This article does offer some service in that it explains certain basic research and provides quotes from certain players in the field. Howver, there are factual problems, a reliance on anecdote, and lack of a skeptical voice. Autism may not just be in the head, but if certain treatments are to be used, then research offered must show that "effective biomed treatments" are not just in the advocates' heads.
References
Elder, J, H., Shankar, M, Shuster, J., Theriaque, D., Burns, S., Lindsay Sherrill. (2006). The Gluten-Free, Casein-Free Diet In Autism: Results of A Preliminary Double Blind Clinical Trial. Journal of Autism and Developmental Disorders. 36(3), 413-420.
Deprey LJ, et al "Double-Blind, Placebo-Controlled, Cross-Over Trial of Subcutaneous Methylcobalamin in Autism: Preliminary Results" AACAP 2006; 33:F47.
posted by Interverbal at 7:07 PM
21 Comments:
“I was on those cliffs you see in the movies and you’re going to jump. You don’t know if there is water below, or enough momentum to get to the other side, but you just jump.”
Even if there is no water, and you don't make it to the other side, there could be a big pile of fat soft wallets to catch your fall.
Yeah, and there's a big pile of soft headed parents down there with those big padded wallets who can help spread the word. "my child was cured, I tell you cured!, well sort of almost, and we were doing 10 other things at the same time and it did take $10,000 in Amy's RNA drops and visits to the HBOT clinic"
I need to read this Discover article but first, might I point out the optical havoc your background wrecks on those toggling between yours and 'white' background websites. Not bigotry, but you may be guilty of copyright infringement as a toy like this is already on the market:
http://www.kltv.com/global/story.asp?s=6217415
Happy mesmerizing,
Bill
Hi friends -
I am a believer in the scientific method. Well designed research studies are important. Even more important, however, is what you see with your own eyes.
If you are a parent of an autistic child and you have stumbled onto this site, please, please do not believe that a lack of studies meeting Interverbal's criteria means that you cannot help your child today by dietary changes and paying attention to what is happening in their gut.
Our son had messy stools / diarheah every day for a year since he stopped breastfeeding until a week after we removed gluten and caesin from his diet. Somehow, even without the help of a peer reviewed article to tell me that the contents of his diaper were different, I was able to make this distinction. This may strike some as amazing, but I stand by my conclusions.
Removing all complex carbohydrates from his diet yielded significant behavioral gains noted by everyone, including those unaware of the dietary change.
Likewise, my son was banging his head 40+ times a day, every single day, for several months. Within a week of giving him anti fungal agents it reduced to perhaps, once a week. Once again, common sense tells me there is a relationship.
He also develoepd a rash similar to what is described in the magazine article; one which his pediatrician had no explanation for, "I've never seen anything like this."
My son's distended stomach reduced greatly upon application of anti fungals and digestive enzymes.
Can I tell you that this will work for every autstic child? Of course not. But it has helped many children.
Testing for yeast metabolites is very easy. If your yeast metabolites come back high, what does it matter if there is a peer reviewed article telling us it helps autistics or not? Treat it. Likewise, testing bacterial populations is also very easy and can tell you if there are imbalances in the intestinal flora that can be addressed.
My son is not healed. But treating his gut has helped him tremendously. It is inexpensive and simple to begin dietary interventions and gains can often be seen within a few weeks. Your primary investment is in labor, and possible, the change to your own eating habits. But the possible rewards are great.
- pD
Hi Jonathan. Thank you for another interesting review.
Thanks for tackling this Jonathon.
So nice of Discover Magazine to provide free advertising to the DAN! organization and Dr. Amy's magic RNA drops.
I guess the real science is hidden in the back pages where you can order magnetic fuel alignment devices and DIY death ray blueprints.
Hello Passionless drone,
“I am a believer in the scientific method.”
I believe you.
“Well designed research studies are important. Even more important, however, is what you see with your own eyes.”
But isn’t this exactly what the scientific method teaches us not to rely on? I think any stage magician worth her name could quickly show us the limits of relying on personal experience or uncontrolled observation, as could a faith healer or witch doctor.
”If you are a parent of an autistic child and you have stumbled onto this site, please, please do not believe that a lack of studies meeting Interverbal's criteria means that you cannot help your child today by dietary changes and paying attention to what is happening in their gut.”
It is not the intent of my posts to dictate that what treatment are and are not effective. It is my intent to review the evidence for a given treatment and find it, or not, as the case might be.
Moreover, the types of existing studies I review fall into a well known categories that I did not create, but occupy well known niches. Further, the criticisms I offer (when I do) are not out of the blue, but based on known methodology issues or logical failures.
What is more, I do not the take the position that jury is out on these issues. I rejected the logic of the editor of Pediatrics, that this issue is now closed and there is naught more to be said, as you may have observed, in my last post.
But if, one puts science ahead of anecdote and if one values applied research over basic research when answering if a given treatment is effective. Then one will note the lack of these things in biomedical treatments of autism and this will likely cause concern.
Our son had messy stools / diarheah every day for a year since he stopped breastfeeding until a week after we removed gluten and caesin from his diet. Somehow, even without the help of a peer reviewed article to tell me that the contents of his diaper were different, I was able to make this distinction. This may strike some as amazing, but I stand by my conclusions.
”Can I tell you that this will work for every autstic child? Of course not. But it has helped many children.”
Evidence?
Parents, note that this site does not say that many of these therapies are necessarily bunk, but is only saying that they need further careful study and should not be considered anything more that experiments until further studies are done.
PD- I don't necessarily agree with our host, but I also need him as a voice of reason. Of all the people who are critical of biomed, he is probably the most even handed with his criticisms. I may side more with you as far as gut issues, but I'll side with our host as far as needing proof.
BTW "Evidence?"
Sorry, I'm just another testimonial for an autistic child helped by helping her gut issues...
Bill
A few thoughts in no particular order.
I worked in oncology when everyone was convinced that beta-carotene was a cancer prevention agent. Practitioners were telling their patients to take beta-carotene. There were ads from supplement companies extolling its virtues. Then a large NIH clinical trial found that beta-carotene actually increased lung cancer rates in smokers.
I now work in ophthalmology and have witnessed two different unproven therapies gain currency only to have clinical trials find that they actually accelerated vision loss.
Martha Herbert is an MD, PhD steeped in both medical arts and the scientific method. That someone of her background would ignore the essential credo "first, do no harm" and suggest that we practice alchemy on children is bizarre.
Many of these therapies are not trivial, especially in children. Shutting down a child's endocrine
system, flushing out essential minerals, and exposing a child to hyperbaric oxygen are unwarranted in the extreme and potentially dangerous.
Before putting a child on an incredibly restricted diet that has no clear rationale, I'd seek the diagnostic talents of a gastroenterologist. There are many possible reasons for GI issues that could be resolved without a difficult diet that could well lead to nutritional deficiencies.
Untrained eyes can be fooled by many optical illusions. Parents are not qualified to diagnose GI problems based on the contents of diapers. Similarly, pediatric neurologists who do neuroimaging studies are not qualified to comment on the genetics of disease.
I would like to remind Passionless Drone that correlation does not equal causation.
First of all, the question that should be asked isn't whether some autistic children have gut problems (yes, of course some do) but whether they have significantly more gut problems than children in the general population. That hasn't been established, and even if it were, it wouldn't necessarily prove that the gut problems caused the autism, as there might be other reasons for a correlation such as unusual food preferences, etc.
My son also had digestive problems after he stopped breastfeeding. After a while, the pediatrician diagnosed lactose intolerance, recommended giving him lactase enzyme tablets with dairy foods, and said that he might outgrow it after a while (which he did).
Several people in my family are autistic, however, and my son is the only one who had any digestive issues, so it seems clear that (at least in my family) the cause is genetic and any gut problems are just coincidental.
Interverbal -
Superb post on this article. Thanks for your efforts.
My son's SpEd teacher sent a copy home last night for me to read, so I had just gone through the process of analysis that you had, and agree on all points. I would take a harsher view of the Texas Toxicity maps, though, as they did not relate well to the content of the article, did not specify in any way what toxins were being measured, and in fact did not show a very strong correlation to begin with.
"Before putting a child on an incredibly restricted diet that has no clear rationale, I'd seek the diagnostic talents of a gastroenterologist. "
You mean the GI doctor who attributed my daughter's vomiting to 'stimming'?
Just as Ped Neurologists are not qualified to discuss gentics, nor are GI doctors qualified to discuss psychological issues...but they do.
Many GI doctors are not trained in the potential issues of autistics (whether there is a correlation between GI issues and autism or there is something they missing because of communication issues is up for discusssion). We should figure out the concomitants of autism and share the results with pediatricians and GI DRS...
Bonnie Ventura, does the term 'Castrol' mean anything to you? I can't remember where I heard your name, but I think Castrol has something to do with it...
Livsparents -- the only Castrol that I'm familiar with is motor oil, and I don't have any connection to that company. Maybe you're thinking of someone else?
Hi Interverbal -
"But isn’t this exactly what the scientific method teaches us not to rely on? I think any stage magician worth her name could quickly show us the limits of relying on personal experience or uncontrolled observation, as could a faith healer or witch doctor. "
I am not attempting to detemrine how someone retrieved the king of hearts from a deck of cards, but rather, if the contents of a diaper resembles soup, or formed logs. What is more, my spouse, as well as my son's therapists and teachers have made the same observations as I have. How would you propose I disprove the possibility that all of us suffer from identical illusions at the same time?
"But if, one puts science ahead of anecdote and if one values applied research over basic research when answering if a given treatment is effective. Then one will note the lack of these things in biomedical treatments of autism and this will likely cause concern. "
Applying a sound methodology for determining inputs, outputs, and relationships does not always necessitate a double blind study. I've never seen a double blind study towards determining if people with their shoes untied fall more frequently than those that tie their shoes. Should I discount someone who makes the claim that they fall more often when they don't tie their shoes for this reason? Should I remind them of the chance that they did not actually fall more often, but merely believe they have?
That is, of course, a very simple scenario. My wife was extremely skeptical of possible benifits of dietary restsrictions. After he had been on the diet for a few weeks, we were in agreement that his stools had changed, as well as his behavior. However, this could have been coincidental to starting the diet. [It is also possible we were under the influence of a group illusion, and his stools were not improving.] It seemed the way to gain confidence in the diet (or not) was to provide him with things that had been restricted and observe the results. As a test, we fed him grilled cheese sandwhiches, waffles, ect for a few days. Following this we (apparently) found the contents of his diapers to be quite a bit different than they had been and his behavior had reversed somewhat. This test has been repeated on several occasions, each time with the same result. In one instance, this was performed in a single blind fashion; our son acting very strangely after school and with very mushy stools. The next morning I questioned his teacher, who admitted that our son had stolen a handful of cookies and eaten them before he had been noticed. That afternoon my teacher apologized profusely; she had had a very difficult and diaper intensive day with my son; she has since become much more appreciative of the dietary restrictions were are placing on our child.
Tell me, how many times do you think I should perform the same experiment and get the same result before I can have confidence that providing my son gluten results in differences in his stools and behaviors? Ten times? One hundred? Can I never gain that confidence without the backing of a double blind study?
Likewise, before starting on anti fungal agents, certain predictions were made to me. Your son will act very poorly for a few days. He may develop a rash. Subsequent stool tests will reveal fewer yeast metabolites. His aggressive behavior will subside. In my case, all of these predictions came true. I personally know other families who have had identical experiences. Should I attribute this to pure luck, or some type of mass optical illusion because there is no double blind study to back up what my spouse, my son's therapists and teachers, and my wife experienced every day? Can you not see why this strikes me as more than a bit absurd?
"Moreover, the types of existing studies I review fall into a well known categories that I did not create, but occupy well known niches. Further, the criticisms I offer (when I do) are not out of the blue, but based on known methodology issues or logical failures. "
This is, I believe, why it may have been inappropriate for me to begin a conversation here.
My position is that I've known many children to be helped by therapies for which there are no double blind studies. Further, I find it tragic that low cost, low danger therapies might be ignored by parents of a child that may be helped by them because of this lack of study. Your focus is very different.
"What is more, I do not the take the position that jury is out on these issues. I rejected the logic of the editor of Pediatrics, that this issue is now closed and there is naught more to be said, as you may have observed, in my last post. "
Your admission is noted and appreciated.
Take care.
- pD
(ps - I'm not sure the preview function is working)
“I am not attempting to detemrine how someone retrieved the king of hearts from a deck of cards, but rather, if the contents of a diaper resembles soup, or formed logs.”
I do not question the existence of gatro issues in your child. I question the connection of this to autism and to treatments that simultaneously are geared to treat gastro issues and autism. If the issue was limited to treating a child’s gut problems then there would be little argument from me.
“What is more, my spouse, as well as my son's therapists and teachers have made the same observations as I have. How would you propose I disprove the possibility that all of us suffer from identical illusions at the same time?”
In this case you can’t. In science we could design a study where we treat your child with a let’s say an anti-fungal and placebo. We could have the parents rate the consistency of the stool but they would be blinded as to what the child received.
I think in real life, communal reinforcement may explain why groups of people see or experience incredible things. I remember being sure as to existence of coyotes in a woods near my home as child and when a friend was with me we were even more certain we saw or head coyotes, we reinforced each others beliefs. I have seen adults do this too.
Applying a sound methodology for determining inputs, outputs, and relationships does not always necessitate a double blind study.
Agreed; a DB group study should only be used if that design best answers the question.
“I've never seen a double blind study towards determining if people with their shoes untied fall more frequently than those that tie their shoes. Should I discount someone who makes the claim that they fall more often when they don't tie their shoes for this reason?”
Probably not, it probably doesn’t merit the time it takes to do this study and it seems common sensical.
But, lets say that I note an increase in knee injuries affecting teenagers. I note a fashion trend among teenagers who now wear their shoes untied. I am very concerned about this and I want these children to be happy and healthy. I theorize a connection between the two and I work to pass legislation that would make it a misdemeanor to have untied shoes. But I have imposed upon these kids and if my law passes it will require enforcement which takes time and money. Further some kids claim that they know lot of other kids who have never hurt themselves because of their untied shoes and they show how in this style the laces are too high up on the shoe to cause the tripping and they say the actual reason for more knee injuries are an greatly increased interest in soccer among teenagers.
Maybe in this case, a study would be required as my commons sense may not be enough to justify what I propose.
“That is, of course, a very simple scenario. My wife was extremely skeptical of possible benifits of dietary restsrictions. After he had been on the diet for a few weeks, we were in agreement that his stools had changed, as well as his behavior. However, this could have been coincidental to starting the diet. [It is also possible we were under the influence of a group illusion, and his stools were not improving.] It seemed the way to gain confidence in the diet (or not) was to provide him with things that had been restricted and observe the results.”
Understandable, something very similar was once recommended for the Feingold diet for hyperactivity in the 70s-80s. This was one of those proofs that propped that diet up. Unfortunately, the research showed that the diet didn’t work, so why then did kids appear to worsen when given restricted foods? Maybe Hoover & Millch (1994) have something to teach us here.
Likewise perhaps the improvement of your child coincided with maturation and regression towards the mean. Or, perhaps there really was an affect. But, no matter what the case, I am truly happy your child is feeling better.
“Tell me, how many times do you think I should perform the same experiment and get the same result before I can have confidence that providing my son gluten results in differences in his stools and behaviors? Ten times? One hundred? Can I never gain that confidence without the backing of a double blind study?”
I don’t think the number of reversals matter so much as the quality of control. One day GF/CF one day unrestricted. You may not be able to control this on a school day, but on vacations you might be able to.
“Likewise, before starting on anti fungal agents, certain predictions were made to me. Your son will act very poorly for a few days. He may develop a rash. Subsequent stool tests will reveal fewer yeast metabolites. His aggressive behavior will subside. In my case, all of these predictions came true. I personally know other families who have had identical experiences. Should I attribute this to pure luck, or some type of mass optical illusion because there is no double blind study to back up what my spouse, my son's therapists and teachers, and my wife experienced every day? Can you not see why this strikes me as more than a bit absurd?”
I can, but, ironically these are very things a good study whether DB or single case design would control for. The research assumes that these could very well be a problem and deals with them. And the fact is, this is a population where the research shows spontaneous and random improvement.
“This is, I believe, why it may have been inappropriate for me to begin a conversation here.”
Not so, your criticisms, ideas, and disagreements are welcome here.
“My position is that I've known many children to be helped by therapies for which there are no double blind studies. Further, I find it tragic that low cost, low danger therapies might be ignored by parents of a child that may be helped by them because of this lack of study. Your focus is very different.”
Correct.
{"What is more, I do not the take the position that jury is out on these issues. I rejected the logic of the editor of Pediatrics, that this issue is now closed and there is naught more to be said, as you may have observed, in my last post. "
“Your admission is noted and appreciated.”}
I not an admission, it is simply an accurate summery of what I have already written.
Thank you PD.
I am appalled that anyone would put out an article touting chellation without noting the risks. And even if (a big IF) it is effective in removing heavy metals and/or improving the impact of autism on functionality, um... what if your kid's autism isn't caused by heavy metal poisoning? Not all autism corrolates to heavy metal poisoning.
I really hope you write a letter to the editor. I was crushed to read yet another bunch of BS in a publication that pretends to be about science and has such a large audience. How irresponsible of Discover!
Monica REynolds
Ann Arbor, MI
Hi Interverbal -
I was doing some reading and came across this study:
Frequency of gastrointestinal symptoms in children with autistic spectrum disorders and association with family history of autoimmune disease.
I'm curious on your take on this study. It, of course, does not show causality between autism and gastro issues; but it does appear to show a relationship between the two.
Another study seems to indicate that nutritional intake did not correlate with stool consistency in children with autism and gastro issues.
Relationship of dietary intake to gastrointestinal symptoms in children with autistic spectrum disorders.
This would seem to cast doubt on the theory that autistics have more gastro issues due to self selecting diets.
I am genuinely interested in the most skeptical opinion available.
Thanks!
-pD
Hi PD,
I don't think I can claim the most skeptical opinion available, but I can give you my take on these studies both of which I have read in full before now.
I have problems with the first study. If I remember correctly, the autistic particpants were recruited from a hospital program. This means there is a fair chance they already had gastro issues.
In research we call this a "Texas sharpshooter" after a marksman who would shoot into a wall, find a cluster of bullet holes, then draw a bulls eye around the cluster.
It would be like doing a study of autistic kids who are on an eye dotors mailing list. It would make it seem as if near-sightedness was related to autism.
However, the second study is well designed for the main question it seeks to answer and it does point to gastro issues in autism, but in a more limited way, as the study was not really designed to show this.
You seem to be very upset that the article in Discover says that many results have been recorded, but they didn't also publish a list of those results. However you must admit there's only so much space within the pages of a single issue, and they cannot be expected to give family and doctor names for every referenced result. And finally, your comment "And even the lowest risk treatment that costs very little money such as the GF/CF diet still takes time and effort on the part of child, the parents, and sometimes that other siblings and grandparents." - Wow. Yes, because God forbid anyone put forth any /effort!/ Banish the thought! Everything should be handed down on a silver platter, or a little white pill, because goodness knows we don't want to expend any /effort!/
Hi Kelley,
It is not that I am upset with the author's contention that many results are recorded. My criticism is that these results were not achieved using an valid scientific procedure that would control for threats. This is pseudo-science, not science and that is a problem.
There are many ways that these problem could be addressed. The advocates of such theories can push for well designed trials of their treatments. Of course doing so will mean their theories will be harmed if the evidence is against them. I wonder if they will have the courage to take this step.
As to your other comment. Many things in the world of autism take work, sometimes hard work. I have seen examples where even the youngest members of families will make sacrifices if they believe it will help a sibling or a parent. And I think that is beautiful.
So, you see, I do not oppose hard work, I oppose mislabeling something that can take hard work as simple or easy, when it may not be either. People should be told that the GF/CF diet can take a fair bit of time, it can effort, it can take a whole families cooperation.
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