The Best of Intentions

Early in my undergrad years I had a conversation with an old school (as it were) special education teacher who had been in the business for 30+ years. In his presence, I expressed anger and frustration with some parents who had made a poor educational decision for their child. The teacher relayed to me a view that I have since heard repeated many times; that ultimately, parents just want the best for their children.

That argument made sense; it reminded me (A 19 year old undergrad at the time) that just because I might vehemently disagree with someone’s decisions or values, that it doesn’t make them a lousy human being. And so this attitude has value, it is simply one more way of reminding us that the world is very often a shade of grey and that we should avoid ad hominem reasoning.

Moreover, it can be aversive for people to experience criticism. It can cut into their enjoyment of an experience or hope in an idea. If a person is already frustrated or struggling, this could be emotionally devastating. Also, many people are increasingly aware that we live a diverse world that encompasses many views. The attitude of biting our tongues is defended so that a kind of harmony and cooperative spirit is maintained.
This is an ethical argument and perhaps could be described as Utilitarian in that it produces a “good” for the greatest amount of people. And for these reasons, focus exclusively on the positive or at least neutral is sometimes defended. There are many common formulations which represent this idea. Thumper’s Rule states: “If you can’t say something nice, don’t say anything at all”.

But recently this issue has returned to my thought and there are some aspects within it that trouble me. I expect this is due to my world view having evolved considerably since the time when I first heard these formulations.

I now operate under certain assumptions that would have been unthinkable to me as a 19 year old; namely, that even criticism and doubt may hold value. It is not that they intrinsically hold value, but simply that they can contain it. Nor would I argue that criticism must be given for the sake of criticism. Instead I would argue that criticism should only be given when merited. I contrast this with “scrutiny” which can and must always be given to decisions and ideas. I will even argue that proper “scrutiny” which I define as the scouring of an idea for merit, always precedes good criticism.

Moreover, criticism may help others realize a problem which may allow this issue to be reduced or resolved. It seems that by the non delivery of the criticism people may be exposed to harm. What is more, when a criticism leads to broad change it also brings a “good” to many people.

Therefore, we now have a conflict between the ethical arguments for avoiding criticism and the ethical arguments in favor of offering them when merited. Harm may come either way, so how can we read this issue?

To resolve this I call into play a philosophy of ethics, known as Deontology. This philosophy, declares that humans have a right to self-determine. It also states that we should treat ends and means as equally important.

In the deontological view we are bound by a duty, to speak the truth. In the absence of full truth we may not grant others the right to fully self-determine. And the harm the truth may emotionally cause does not outweigh the right of the individual to be treated as a “full person” and given the true ability to make a decision and given the entire truth.

In the US, these deontological points are the basis for the idea of informed consent, or the standard in which patients have a right to give, withhold, or withdrawal consent to a procedure. In the US, persons under the age of 18 are considered minors with the inability to make certain decisions. A proxy (Usually the parent) therefore makes these decisions for the child’s benefit; the law having made the assumption that the proxy’s informed consent matches what the minor would have consented to had they been of legal age. This is relevant to this case, because the parents making the decision are not making it for themselves, but for their child.

But while this assumption might be generally true it is also imperfect and this has been noted. There are cases where parents have refused blood transfusions for their badly injured child based on their religious beliefs and been overruled by court order. The informed refusal of the parents on behalf their child, was no longer considered a reasonable stand in for the child’s consent. It seems that in this case, the best of intentions of the parents, could lead to harm for the child.

And this takes us to several new fallacies for my list:

#72 Special Pleading

To argue against a general rule in a singular case, because of metaphysical, experiential, or emotional circumstance.

Example:

You don’t understand that how parents perceive things, so of course certain treatments seems ridiculous to you.


#73 The fallacy of Self-Righteousness

This is a subtype of Special Pleading. This fallacy confuses good intentions with an actual good or facts. This fallacy is almost the same as the Fallacy of Samaritan Intent. The difference is that the Fallacy of Samaritan Intent attempts to excuse an argument when harm has already been caused, whereas in this fallacy harm does not have to be present.

Example:

Mary: Why is your child on a drug that has a high rate of serious side effects?

Rick: I want him to be successful in school.


And this takes us to the last fallacy and the one most relevant to the topic of this post.

#74 The Fallacy of Good Intentions

This fallacy is used to try to avoid any future criticism of a given group based on that group’s good intentions. It is similar to self-righteousness, but it does not argue against specific criticism, instead it tries to totally avoid present criticism and prevent any future criticism. It is also similar to an appeal to the gallery, as it invokes specific groups’ sympathies. There is a cliché that encapsulates this idea: The road to Hell is paved with good intentions.

Example:

Parents just want the best for their children, so please don’t make any negative statements about what they choose for their children.

My conclusion on this issue is that remaining silent violates the deontological responsibility of any individual to speak up when others are offering false or misleading information. The excuse that those who offer such misleading statement are parents is no real excuse at all and that the best of intentions, is not enough by itself.

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.

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.

Hoover, D. W., Milich, R. (1994). Effects of sugar ingestion expectancies on mother-child interactions. Journal of Abnormal Psychology. 22(4), 501-15.

A Review of the Critiques of Fombonne et al. (2006)

Overview

The critiques of Fombonne et al. (2006) do point some relevant problems with that study. However, they also use some considerably problematic arguments themselves.

Introduction

Fombonne et al (2006) attempts to correlate data between an increase in the number of cases of the Pervasive Developmental Disorders and vaccine use in school children residing in Montreal, Canada. That research failed to reveal any such correlation. In addition the researchers found a prevalence rate of the PDD’s which match what is seen in the US (Bertrand et al., 2001), the UK (Chakrabarti & Fombonne, 2001; and Chakrabarti & Fombonne, 2005), the Faroe Islands in Northern Europe (Ellefsen et al., 2006), and matches data on Autistic Disorder in Japan (Honda et al., 2005)

Recently, two web based articles have been released and promoted based out of the National Autistic Association website. These articles were written by Dr. David Ayoub & Monica Ruscitti for one letter and Dr. Edward Yazbak for the other. These authors raise important and damaging points which call into question the validity of Fombonne et al. (2006). I note however, that not all the points raised in these critiques have equal merit; in fact some of the points raised are most notable for their lack of merit. The points raised in the critiques are discussed below.


Review of Ayoub & Ruscitti

The authors point out that Fombonne et al. (2006) only uses data from only one of Montreal’s five school districts. This district is specifically an English speaking section. The authors accurately point out that a selection bias may have occurred here. In addition the authors note that Fombonne et al. (2006) claimed they could not gain access to the other school districts’ data. The authors then claimed they gained access to this data and make specific claims about a notably higher rate of autism in the school district Fombonne et al. used. I note that these data and analysis methods are absent.

The authors note that English is only the third most common language in Quebec, the largest group being French and the second largest being assorted foreign languages. The authors note that access is restricted to the English speaking school district by a law designed to help protect the French language. However, the authors simultaneously make the claim that this English speaking school is more inclusive than the others. This claim seems contradictory. It is possible that while the English speaking district is more exclusive in general it is in fact more inclusive towards students with disabilities. However this point is not explained.

The authors correctly criticize Fombone et al. (2006) for describing thimerosal laden shots as “nil”. The authors go on to describe vaccines in Canada that continue to use thimerosal. However, the authors fail to note that none of these vaccines are actually required any longer and for that reason exposure should not be comparable.

The authors mention that fourth graders largely participated in a voluntary vaccination program for Hepatitis B, which contains thimerosal. However, the DSM-IV mandates that Autistic Disorder first appear in a child by age 3, even if it is diagnosed later. Fourth graders do not develop autism. Also, and rather remarkably the authors cite Roy et al. (1999) which is concerned with the health and safety including vaccination based on high risk behaviors of street youth in Montreal. The median age of that study was 19.5.

The authors criticize Fombonne in the following terms:

“he ignored the fact that autism rates increased following a doubling of the MMR exposure after 1996 when a second MMR shot was added to the immunization schedule and chose to emphasize that a rise in PDD rates coincided with a decline in MMR coverage rates. Obviously the increased amount of administered viral load to the population was far greater influenced by a doubling of shots administered than by a marginal drop in immunization coverage rates. He likewise ignored the potential impact of mass measles immunization campaigns in Quebec that delivered a second dose of measles to a large number of infants and children throughout 1996. (11) The subsequent rise in PDD shortly after that campaign is clearly depicted in their figures and would lead us to believe this observation supports an association between PDD and MMR exposure.”

The above assumes that the drop in thimerosal was not only made up, but actually exceeded by the increase in MMR dosage. For this explanation to work, one must simultaneously assume that both thimerosal and the MMR can cause autism. A more parsimonious explanation would be that the rate of autism would have risen regardless, which is certainly what we see in other locations including the no longer mandatory thimerosal exposure in California.


The authors also state:

“Numerous reports of higher PDD rates among immigrants have been reported in Canada and other industrialized countries.”

This claim is demonstrated no where in any research. It even seems to contradict some actual research (Kamer et al., 2004).

The authors go on to assert:

“Finally the paper’s observation about rising PDD rates seems to contradict Dr. Fombonne’s well-known contention of the lack of evidence of an autism epidemic. In an Inserm interview, Dr. Fombonne said, “to declare an epidemic, or sensible increase of the prevalence, it would take incidence studies, always the same, year after year, but this data is not available in any country.” (12) The database we obtained from the MEQ represents the type of dataset Fombonne stated was required to detect true increases in PDD. According to one Montreal-based autism organization, data from the MEQ revealed an increase in annual PDD cases in Quebec from 410 (1990-1991) to 4,483 (2005-2006), a nearly 1,000% increase over 15 years. (13) This is staggering and is strong evidence of a real rise in neurodevelopmental illnesses that cannot possibly be solely genetic in nature but supports an environmental etiology.”

The above statement is presents a false problem. An increase in this data set may not be attributable to real change in the actual number of cases. The system could be open to a lack of control for the six threats to statistical validity. This is a well known problem in other administrative data sets in the world of autism.

Review of Yazbak

The author submitted an letter to the editor detailing concerns about uptake of the MMR rate in Montreal and the increase in the PDDs. The editor forwarded this comment from Dr. Fombonne:

"This person is known to pursue the MMR-autism agenda at all
costs in order to 'demonstrate' a link he strongly believes in. The only way ahead is to encourage him to do independent research. All controlled epidemiological research thus far has concluded to the absence of such a link."

the editor of the journal had this to say:

“As a note, I believe the evidence of no link between MMR and Autism is sufficient. It's not worth publishing more on this subject. We will not be publishing this exchange of correspondence.”

I disagree with Dr. Fombonne’s approach to this situation. It is not relevant that Dr. Yazbak believes in a vaccine etiology of autism. I also disagree with his failing to address Dr. Yazabak’s criticisms which are specific and serious.

I also heartily disagree with the editor’s refusal to publish Dr. Yazbak’ criticism. While it is certainly his job to ensure that all matters within the journal merit inclusion under a serious scientific aegis, Dr. Yazbak’s criticisms are specific and fall into known categories of scientific criticism. Whether or not he believes it has no bearing on his responsibility to publish scientific criticism.

However, given the title Dr. Yazbak selected “Far-Fetched”, perhaps the editor had ground to refuse this letter or at least demand that it be re-titled. Pediatrics is a serious academic journal of high standard. In most such journals while a given level of sarcasm and dismissiveness is permitted, this seems to have crossed the line of acceptability.

Dr. Yazbak goes on to assert:

“When he was in France, Dr. Fombonne was a well known psychiatrist who published articles on psychiatric topics. He was still a psychiatrist when he moved to England …until Andrew Wakefield suggested that the link between MMR vaccination and autism should be further investigated and suddenly …Dr. Fombonne became a “psychiatrist / epidemiologist” and a consultant to the UK medical authorities on MMR vaccination and autism”

The Wakefield controversy began in 1998. So:

Fombonne, E. (1996). Is the prevalence of autism increasing? Journal
of Autism and Developmental Disorders, 6, 673–676.

Fombonne, E. (1997). The prevalence of autism and other pervasive
developmental disorders in the UK. Autism, 1, 227–229.

QED.

The author further asserts that:

“It is obviously customary to disclose sources of funding, Disclosing sources of “Non-Funding” on the other hand is unusual. In any case, it is nice to know that Dr. Fombonne’s research was never funded by the “Industry”.”

This is easily explainable in that Dr. Fombonne’s work has been informally criticized as being supported by the pharmaceutical industry, possibly with the intent that he would manipulate the data in favor of finding no association. This statement may have been given to help put such non-sense to rest.

Conclusion

It is important to remember that the weak criticisms in the critiques above do not remove the genuine and quality criticisms. The authors do point some genuine problems. The failure of both editor and Dr. Fombonne to make adequate response is also disagreeable.

By the same token some of the criticisms are remarkable for their lack of relevancy or factual basis. There are problems with these critiques that have a real potential to mislead others. It is to be hoped that the NAA and the authors will take steps to amend this, leaving their better criticisms intact.

References

American Psychiatric Association. (2000). Diagnostic and Statistical Manual ofMental Disorders, Fourth Edition, Text Revision. Washington, DC:American Psychiatric Association; 1994.

Bertrand, J., Mars, A., Boyle, C., Bove, F., Yeargin-Allsop, M., & Decoufle, P. (2001). Prevalence of autism in a United States population: the Brick Township, New Jersey, investigation. Pediatrics, 108, 1155-161.

Chakrabarti, S., & Fombonne, E. (2001). Pervasive developmental disorders in preschool children. Journal of the American Medical Association, 285,3093-3099.Chakrabarti, S., Fombonne, E., (2005). Pervasive developmental disorders in preschool children: confirmation of high prevalence. American Journal ofPsychiatry, 162(6), 1133-1141.

Ellefsen, A., Kampmann, H., Billstedt, E., Gillberg, I. C., Gillberg, C. (2006). Autism in the Faroe Islands. An Epidemiological Study. Journal of Autism and Developmental Disorders. [Electronically published ahead of print]

Fombonne, E. (1996). Is the prevalence of autism increasing? Journal
of Autism and Developmental Disorders, 6, 673–676.

Fombonne, E. (1997). The prevalence of autism and other pervasive
developmental disorders in the UK. Autism, 1, 227–229.

Fombonne, E., Zakarian, R., Bennett, A., Meng, L., McLean-Heywood, D. (2006). Pervasive developmental disorders in Montreal, Quebec, Canada: Prevalence and links with immunizations. Pediatrics. 118(1) 139-150.

Friis, R. H., Seller, T. A. (2004). Epidemiology for public health practice, 3rd ed. Sundbury, MA: Jones and Bartlett Publishers.

Honda, H., Shimizu, Y., Imai, M., & Nitto, Y. (2005). Cumulative incidence of childhood autism: a total population study of better accuracy and precision. Developmental Medicine And Child Neurology. 47(1), 10-8.

A. Kamer, A. H. Zohar, R. Youngmann, G. W. Diamond, D. Inbar, & Y. Senecky. (2004). A prevalence estimate of pervasive developmental disorder among Immigrants to Israel and Israeli natives. Social Psychiatry and Psychiatric Epidemiology. 39 (2), 141-145.

Roy, E., Haley, N., Lemire, N., Boivin, J. F., Leclerc, P., & Vincelette. J. Hepatitis B virus infection among street youths in Montreal. Can Med Assoc J. 1999;161(6):689-93.