By J.B. Handley
“I am sure that only an open debate, searching for new mechanisms and many more experiments may solve the problem of what caused the rise of the incidence of autism that is becoming more and more real the more we investigate the problem.”
- Kris Turlejski, Acta Neurobiologiae Experimentalis, Editor-in-Chief
Despite no mainstream reporting about the recent edition ( Vol. 70, No 2 ) of the medical journal Acta Neurobiologiae Experimentalis, it represents a watershed moment for the autism community: multiple scientists coming together and challenging many of the autism epidemic’s most pernicious myths.
AoA, appropriately, has focused on one study from the journal by Hewitson and colleagues comparing vaccinated and unvaccinated primates, which ANE’s editor notes “support[s] the possibility that there is a link between early immunization and the etiology of autism.”
Another excellent paper in ANE’s current edition was written by Mary Catherine DeSoto, Ph.D. and Robert Hitlan, Ph.D., titled "Sorting Out the Spinning of Autism: Heavy Metals and the Question of Incidence.” Dr. DeSoto is a welcome voice in a debate about autism that has grown ugly, partisan, and close-minded, particularly amongst the mainstream scientific community. An Associate Professor from the University of Northern Iowa and a published scientist with nearly two dozen works to her name, Dr. DeSoto makes a powerful case regarding two of the more heated arguments in the autism debate: is the rise in autism cases real and do heavy metals play a role in autism?
There’s no fact or data set more important than reaching a consensus amongst every stakeholder in the autism debate that the incidence of autism is truly on the rise. If it is, than our money should be focused on finding the environmental trigger for all these new cases. If it isn’t, perhaps the money should be best spent on improving education and services. How do we find a cause for something if we can’t even agree that it’s indeed growing or that there might be a trigger for it? She writes:
“But we believe that recent studies and recently available data sets are providing convergent evidence for a secular increase [in cases of autism] across numerous countries.”
Also in her paper, Dr. DeSoto pulls no punches in challenging her scientific colleagues for “spinning” the message about autism and its relationship to toxins and argues that:
“It cannot be said there is no evidence for a link between heavy metal toxins and autism: although the question may still be open-in sum, the evidence favors a link.”
Dr. DeSoto also shows tremendous courage in wading into the topic of the bias and “spin” that many in the mainstream scientific community appear to provide when speaking about the science of autism incidence and autism and heavy metals. She writes:
“If a person has publicly staked his/her career on a certain position being right, it may become harder to keep a truly open mind, even when new data become available and even when the original intent was to be objective. A way this bias might manifest itself is an over-statement or slight misstatement of results.”
Our community would be pleased to know that Dr. DeSoto uses none other than the Dark Lord himself, Paul Offit, as an example of a pundit propagating this spin:
“For example, Paul Offit concludes that Thompson and others (2007) study ‘found no evidence of neurological problems in children exposed to mercury-containing vaccines’ (Offit 2007, p. 1979). But is this really true? According to the article’s authors, they detected only a ‘few significant associations with exposure to mercury’ (Thompson et al. 2007, p. 1281). Of some interest to the question of early exposure and autism, ‘Increasing mercury exposure (in the first month of life) was associated with poorer performance of a measure of speech articulation.’ (Thompson et al. 2007, p. 1281), although this finding is in need of replication, it is of interest since poor articulation occurs in those with autism…"
This is the sort of bias, whether conscious or unconscious, that occurs. Because some of the authors of the Thompson study have publicly aligned with opposing a mercury-autism link (by taking consulting fees), they may be unconsciously more prone to review studies that support their view, less likely to review opposing viewpoints, and may eventually become unaware of relevant research (e.g., Newland et al. 2008). By using 42 measures and finding only a small handful of effects, it is easy to say the obtained relations are chance occurrences. Then, another scholar summarizes the study and slightly changes the results based on a worldview that there is no effect of thimerosal, ‘found no evidence of neurological problems in children exposed to mercury-containing vaccines’ (Offit 2007, p. 1279). Then this assessment gets quoted by those who do not bother to look carefully at the original study, and scientific advancement becomes stifled.”
* * *
I was so impressed with Dr. DeSoto and her writing that I sought her out for an interview. Below, please find the email interview she was kind enough to do for AoA. Her words speak for themselves, and I express my gratitude to Dr. DeSoto for taking the time to engage our community:
Q: Is criticizing published science of others a wise career move?
Dr. DeSoto: Honest debate is how issues in science get resolved. Scientists are supposed to be critical thinkers. Usually, there are different views on a topic, debate occurs, and slowly consensus emerges. Criticizing published science is part of the scientific process. Criticism should be factual and logical. Publishing means one is putting their work out in the public arena for others to evaluate.
Q: What would you say to the CDC and AAP, two groups that today do not acknowledge a real rise in the number of children with autism?
Dr. DeSoto: It should also be noted they never say there is not an increase. They seem reluctant state the conclusion their data leads them to. I suspect that soon a true increase will become “official.”
Q: If autism is truly on the rise, does that require some sort(s) of environmental trigger?
Dr. DeSoto: Yes, it does. Genetic changes and natural selection do not result in noticeable shifts in phenotypes within one generation. Exceptions to this would be expected to occur under catastrophic situations (like half the population dies and all of the survivors who pass on genes have a certain gene type). Barring an extremely strong and abrupt selection pressure where many (many many) suddenly do not reproduce, observable changes due to natural selection take multiple generations.
However, the same gene pool can have marked differences in observed outcomes if the environment changes. This is because environment effects the functioning of genes. (e.g. Identical twins with the same genes are not always the same even on things that are largely genetic – like height.) There is an important process called DNA methylation. Methylation changes how the DNA is transcribed—it alters gene expression. Once methylation occurs within a gene, the change can be passed on when and if the cell divides.
In effect, the gene will be functioning like it was a slightly different genetic code. The many ways this happens are getting to be well understood. Methylation is a normal process, but toxins and environmental exposures can cause methylation to happen at times and locations that it would not normally be occurring, or can prevent normal methylation that should be occurring. Autism on the rise does not require a shift in the gene pool, just a shift in how genes are functioning. A shift in the gene pool would occur over many generations under natural selection, but a change in environmental triggers can change the functioning of the gene pool. Then it gets complicated because presumably natural selection would become responsive to this trigger, but that is getting beyond your question. The answer is, yes.
Q: What is your reaction to the fact that over 95% of the dollars spent to date on autism research have been on genetics (and not genetic-environmental interaction at that)?
Dr. DeSoto: It is a little surprising, if this is the case. I think it has generally become well understood that considering genetics or environment in isolation reflects a lack of appreciation for how genes work. Genes and environment work together, they influence each other (yes, both ways).
Epigenetics and interaction studies should be at the forefront, with support for genetic centered studies as well as exposure-centered studies. Obviously, I think that research on autism should not be limited to just one aspect of etiology, but that multiple approaches should be supported.
Q: There is a study published in Acta Neurobiologiae Experimentalis alongside yours that deals with vaccinated and unvaccinated primates. Do you have a reaction to the study or its conclusions?
Dr. DeSoto: All the primates were vaccinated, the difference was whether there was a heavy metal additive. This is a potentially important study. There are a few weaknesses that prevent strong conclusions. The size of the control group is small (apparently n=2). Given that rhesus neural development within the brain region of interest is not all that well documented, a larger control group would have been desirable. This weakness is acknowledged by the authors.
Isolating the infant monkeys shortly after birth is a significant change from normal environment. The severing of the maternal bond and being raised essentially alone (only visual contact was maintained with the peer infants) affects every aspect of development – including neural development. There is evidence that brain volume is specifically affected by isolation. The rearing situation in the study, in my mind, is not very comparable to normal development, especially if the outcome of interest includes brain volume.
That said, this is the only study that has compared the net effect of multiple vaccination additives on brain development. Above all, I have to editorialize and say this seems difficult to understand (that is – why is this the only study?). If some scientists and some parents question the safety of the vaccine schedule, such studies as this one are the way to investigate the concerns.
Now, the one study that exists (even if there are caveats that go with pilot research) suggests there are differences. Whether one is of the opinion that individually testing vaccines is as good as testing the combined effect or not – at this point it is imperative that additional studies be conducted on the additive effect of the full vaccine schedules.
To be clear and to repeat, if one thinks that the vaccines with additives given in close succession have no effect on neural development– this ought to be established empirically. One thing that I noticed in the study is the main effect for difference in brain volume (no time effect). It should be noted that this suggests the early administration of additive-containing vaccine (first four rounds) was a culprit of interest.
Q: The word "aluminum" was not mentioned in your article in the context of vaccines. Was this omission intentional?
Dr. DeSoto: No. Although technically aluminum may not be considered a heavy metal, I was including it in my mind under the umbrella of heavy metals. I would include it any list of toxins to consider in relation to a disease of neurodevelopment.
Q: You mentioned receiving highly emotional responses and threats when you re-interpreted the Ip data. What was the nature of the responses and threats? (what were people concerned about?)
Dr. DeSoto: I did get some calls at home, but they were within realm of reason. A couple of emails said negative things (things like “if you believe that XXX then you are a fool” or “you are really not much a scientist and wrong…” The threats were along the lines of coming to my school and causing problems and/ or telling others how bad I am. The really ugly things were posted anonymously on the internet. People found my personal website and such and posted pictures of me with a wine glass, stuff like that. Far more bothersome than any of that were the blatant falsehoods circulated about the data and the paper. Hate that, it is the antithesis of science and knowledge.
FYI there is a website all about this…. If you are interested:
Q: Is studying the link between autism and vaccines career suicide for any well-intended scientist (you take great pains in your paper to make the discussion more global re: heavy metals and autism)?
Dr. DeSoto: It might be suicidal, but scientists should actually be free to investigate any topic their education and mind leads them to. No topic of investigation should be stricken from the list of acceptable topics.
For me, and my read of the literature as a whole, and not discounting parental anecdotal reports, I do not think that vaccines can be the sole – and probably not the principal cause of an autism epidemic. I will add that it is beyond dispute that some children are harmed by the vaccine schedule. It seems almost beyond dispute that for at least a few children, vaccination served as a trigger for a cascade of events that ended up as something people recognize as autism. I feel very comfortable defending that. What is needed is a better understanding of how genetics and triggers fit together; how things work together (aluminum, organophoshates, pollution, emissions, lead, vitamin D, infections, mercury, food additives ) and which kids these things might matter for.
I think that some will be disappointed to read that I doubt that vaccines are the sole (or principal) cause of the rise in ASD. This is because of well done longitudinal research such as Eskenazi that suggest that early exposure to other non-vaccine related toxins also predict ASD. I could be wrong -- and the question is an empirical one -- but for now I tend to suspect that many things can be a trigger within a susceptible child. I am open minded, and the research to fully test this has not been done. More research like Hewitson did is what is needed (with a larger control group raised in a more normal manner). Anyway, this is my thinking for the time being.
Q: Your paper states that you feel the weight of the evidence favors a connection between heavy metals and autism, although it's not well understood. With the limited knowledge we now have, what advice would you give a mother preparing to have her first child?
Dr. DeSoto: Make an effort to avoid toxins in all forms. Get a little sunshine most every day. Eat mostly non-processed and natural food. Learn about which common products have toxins and unsafe additives. Don’t assume that just because something is available, it is safe. There is no substitute for taking the responsibility to be informed.
The weight of evidence certainly favors a link. Here is the table that shows our count of the empirical literature from the Spinning of Autism article (DeSoto and Hitlan, 2010, p. 168). This is not a self-selected survey of the literature. This is ALL of the articles than hit when one searches for Autism and mercury OR autism and heavy metals http://www.uni.edu/desoto/pubmed_search_autism.htm
Q: Do you think blood is a reliable indicator of overall toxicity within a human body?
Dr. DeSoto: You mean whether blood levels are a valid indicator of toxins within the key organs. Blood levels are not perfectly valid, no. I think that the degree to which blood measures match tissue levels and exposures is not uniform across individuals, or across ages within the same individual (this should not be taken to mean blood levels are useless—ask if this is not clear).
Q: Many parents in our community report almost no excretion form Urine Toxic Metals tests until they have actively chelated their child with DMSA/DMPS for 4-6 weeks or more. The theory is that somehow the children with autism either hold on to the metals more strongly or that their excretion systems are shut down. Are you aware of this anecdotal information and does that impact what you think of the tests that have been done?
Dr. DeSoto: I am not aware of any anecdotal information.
Q: Parents of children with autism feel like they are running against the clock to try to help their children. Should your paper influence the approach parents take to treating their autistic child?
Dr. DeSoto: I don’t think I feel qualified to answer that one.
Q: Are their simple studies that could be done right now that would give us more complete and actionable information about what has happened to our kids? If so, could you please describe it to me?
1. Studies like Hewitson et al’s.
2. Pockets of high incidence should be documented and studied (e.g. Somali immigrant populations).
Q: Do you think 100% unvaccinated children should be studied to compare their neurodevelopmental outcomes versus vaccinated peers?
Dr. DeSoto: Yes. MRI’s are not invasive, but there is so much variation one would need a fairly high sample size. If this were done, it would be ideal to also test DNA for genes associated with handling toxins. If such a study were done (a test between vaccinated and non-vaccinated on say amygdale or brain stem) the question would be “does it look like there is a difference?” Markers of oxidative stress might also be a good outcome to consider. Again, gene differences would be important to consider as well. It could be that genes and exposure are needed. If one did not then measure (and essentially control for) genes, any effect might be missed.
J.B. Handley is Co-Founder of Generation Rescue.