On Saturday, Story Landis, PhD, director of the National Institute of Neurological Disorders and Stroke, an agency of the National Institutes of Health, abruptly resigned from the federal government's premiere autism research panel - the Interagency Autism Coordinating Committee (IACC) - citing embarrassing notes she had left behind at a recent meeting.
But now, the Director of the NIH, Francis Collins, has come forth to blame "tension and a lack of trust," (presumably among autism parents) for forcing Dr. Landis's resignation.
Dr. Landis resigned from the powerful panel on Saturday after the Age of Autism blog published handwritten notes - assumed to be written by Dr. Landis - speculating on the motives of an autism mother and IACC member, Lyn Redwood - who wanted research into autism as a multisystem biological disorder, as opposed to a purely mental health disorder.
For more details on Dr. Landis's resignation from the IACC, see here.
Meanwhile, Dr, Francis Collins, head of the NIH, has spoken out on the resignation of Dr. Landis from the IACC, in a video clip posted by the Simons Foundation Autism Research Initiative.
Dr. Collins called autism a "disease" (as opposed to a disorder) that "ravages" children, and conceded that parents have "understandably" been left frustrated and impatient. He also rightly stated that we need to "poke around in every possible way" and not assume that there is just "one path" to solving the riddle that is autism.
But, some parents also wonder, was the NIH Director admonishing them for making Dr. Landis feel it was "necessary" for her to resign from the IACC? Was Collins also demanding that parents "step back" from pressuring federal offcials to find the cause of their children's disease?
It is not possible to tell from his rather vague comments. I will ask for a follow up interview to elicit more context for his remarks, which were as follows:
Clearly the area of autism is one where great passions have come to bear, and you can understand that. Parents who have kids with this disease, who have seen every day the ravages that this has brought down upon the heads of their child and on themselves, are impatient, and understandably so. Frustrated, and understandably so. And different perspectives about what is the right direction to take have certainly bubbled up at the IACC at times, in a rather tense way.
The recent experience where Dr Landis found it necessary to resign from the IACC is just one example of the level of tension and lack of trust that seems to have appeared in that environment. My hope would be that this experience might cause people to step back a little bit from the intense battles that seem to be going on and say, "Wait a minute, what can we really do here that is the right thing to do to get the answers?" That's what we all want. I know that is what everybody wants. We don't know what the answers are right now. And so it's critical to poke around in every possible way that might give those answers, and not assume that there's just one path that's going to get to the truth.
Time will tell if Collins is able to resolve all the "tension" and "lack of trust" at the IACC, but he has his work cut out for him.
"This is disingenuous condescension on the part of Collins. Step back? Who manipulated the agenda, both procedurally and substantively, to make sure vaccine research would not happen?" Robert Krakow, an attorney and the father of a child with regressive autism told me.
"Step back?" Krakow continued. "After years of inaction? My reaction to Collins is that we should step up, not back, and intensify our advocacy, not temper it. His words are too little, too late for us to put our trust in the NIH. They have had their chance. They have lost our trust. Now someone at NIH needs to step up to do the right thing. That burden should not be on beleaguered parents who are seeking answers from the 'experts.'"
And Sallie Bernard, an autism parent with the Coalition for SAFE MINDS, attributed parental impatience and frustration to "15 years of NIH autism plans and millions spent with only modest, incremental advances. We are at 1 in 100 children and NIH can't explain why. Instead of asking parents to 'step back,' he should acknowledge the failures in NIH leadership, such as telling Congress that no extra money is needed for autism research. Dr. Collins could send a welcome signal to parents that NIH will do the right thing by finally holding its autism team accountable for real progress."
On the other hand, Dr. Collins may end up being more in agreement with these parents than other leading medical figures in the country, who still insist - despite mountains of evidence to the contrary - that the answers to autism's mysteries lie almost exclusively in the human genome.
On Sunday, Dr. Collins gave a speech at the Society for Neuroscience meeting in Chicago, and, if you were to judge solely by the article written by Virginia Hughes on the website of the Simons Foundation, you would surmise that his autism research focus is almost exclusively centered around genetics.
"Collins was head of the National Human Genome Research Institute for 15 years, and led the high-profile Human Genome Project, so he is no stranger to the limelight," Hughes fairly gushed. "But as head of the NIH, in charge of a $31 billion annual budget, he is a powerful man with big ambitions."
During his speech in Chicago, Collins spent a good deal of time talking about autism, "a disease of great public concern and great scientific puzzlement," as he put it. And, as Hughes wrote, "He said that high-throughput technology has already identified more than 50 (genetic) variations, both rare and common, linked to autism spectrum disorders. He added that $30 million dollars of funds from the American Recovery and Reinvestment Act will be used for full sequencing of target genes and, for a few individuals with the disorder, whole-genome sequencing."
But Hughes did not write about Dr. Collins's dedication to studying environmental factors in autism as well. In another video clip of his interview with the Simons Foundation, the NIH Chief had this to say:
There have been some insights, in some cases of children, of environmental or genetic contributions, but more still remain unexplained. But, in part due to the Recovery Act, NIH is beefing up its autism research to a considerable extent in several areas. One is to look at environmental factors that might play a role that haven't been discovered. Another area is to study the interventions that have been proposed to see which ones work best for children with autism. And a third is to try to understand what the genetic influences might be.... But it may be that autism at the DNA level is not one disease, but it may be 100 or 1,000 different diseases, all of which have in common this effect on the brain.
This wasn't the first time that Dr. Collins has recognized that autism "must" have environmental as well as genetic influences. Back in 2006, while testifying before the House and Senate Subcommittees on Labor-HHS-Education Appropriations, he said the following:
Genes alone do not tell the whole story. Recent increases in chronic diseases like diabetes, childhood asthma, obesity or autism cannot be due to major shifts in the human gene pool as those changes take much more time to occur. They must be due to changes in the environment, including diet and physical activity, which may produce disease in genetically predisposed persons. Therefore, GEI (NIH's Genes and Environment Initiative) will also invest in innovative new technologies/sensors to measure environmental toxins, dietary intake and physical activity, and using new tools of genomics, proteomics, and understanding metabolism rates to determine an individual's biological response to those influences.
Dr. Collins is on the record: 1) He recognizes that at least some autism cases have been associated with environmental influences, 2) He wants to study all potential environmental factors in autism, including toxins, and 3) He wants to study "proposed interventions" that can actually help those with autism -- which he called a "disease" -- get better.
It is not clear exactly to whom Dr. Collins was speaking when he said to "step back" from the tensions at the Interagency Autism Coordinating Committee. But I do hope he will "step up" to convince scientists that the search for answers to autism's "mysteries" is to be conducted as much in our modern environment than in our DNA.
This post originally appeared on the Age of Autism site.
David Kirby: Is Autism Associated with A Viral Infection?
Autism - Wikipedia, the free encyclopedia
Autism Fact Sheet: National Institute of Neurological Disorders ...
Study: Mercury levels not elevated in children with autism
From Haircuts to Movies, Businesses Reach Out to Autism Families
Cloudy With a Chance of Allergies or Autism?
Screening for autism: New tool looks at child's speech patterns
http://aje.oxfordjournals.org/cgi/content/abstract/170/9/1118
http://aje.oxfordjournals.org/cgi/content/abstract/170/9/1118
Do we see a pattern here folks?
You must think people are awfully stupid - you posted this point further down and I pointed out exactly what was wrong with it. The average age of parents at birth may be moving up -it didn't leap up by say 10 years between 1986 and 1992 for which birth cohorts autism incidence rocketed (notably in the UK).
GenX are having their kids later...that is a fact. With the increased age of the parents, one would see an increase in.....common' John, say it with me....the incidence of autism. Why do you deny this? These are facts and yet you deny it in favor of your world-view.
What else changed during that time, John? When did the DSM go from III to IV? When did autism awareness and support service come to be common in our schools? When were teachers and pediatricians taught to recognize individuals who might be on the spectrum? When did the internet make its way into our homes, bringing the autism community together? Or, when webaites and blogs became available, flavoring peoples' perceptions of the numbers of cases?
Do you think, John, that it might, just might, be several factors contributing to this phenomenon?
What insight do you have on neurobiology and autism? I'm curious as to how you think changes in brain structure result in the characteristic behaviors described as ASDs. According to your toxin explanation, how are onl specific parts of the brain affected and not others? If I consume too much inorganic mercury, many of my organs will be affected. Nerves in my hands will be affected, as will many throughout my brain. How does your toxin-induced autism result in such specificity?
Not unreasonable at all, since glutathione levels decline as we age. However, anecdotally speaking, it doesn't apply to me, since I was 19 when I had my first, and 29 when my third was born. (2 out of 3 autistic, the other mildly learning disabled).
Or perhaps a change in pain reliever?
http://www.grc.nia.nih.gov/branches/rrb/dna/pubs/Becker%20and%20Schultz%202009.pdf
Nah, couldn't be as simple as a switch from aspirin to Tylenol after aspirin was found to be linked to Reye's Syndrome in the 80's? Or could it?
Interesting article. Of course Tylenol was popular long before the dramatic increase in autism. However, the use of temperature reducing drugs may be an issue and associated with increased risk of autism.
Sure it was, but Tylenol still had to compete with aspirin until 1980. Once aspirin was found to be linked to Reye's Syndrome, however, that competition was eliminated.
From Wikipedia, the free encyclopedia
Raggedy Ann is a fictional character created by writer Johnny Gruelle (1880–1938) in a series of books he wrote and illustrated for young children.
Gruelle created Raggedy Ann for his daughter, Marcella, when she brought him an old hand-made rag doll and he drew a face on it.
Marcella died at age 13 after being vaccinated at school for smallpox without her parents' consent. Authorities blamed a heart defect, but her parents blamed the vaccination. Gruelle became an opponent of vaccination, and the Raggedy Ann doll was used as a symbol by the anti-vaccination movement.
http://en.wikipedia.org/wiki/Raggedy_Ann#cite_note-0
http://www.naturalnews.com/027311_vaccines_drug_companies_medicine.html
Bracing Ourselves for More Sham Vaccine Studies
http://www.globalresearch.ca/index.php?context=va&aid=15669
http://childhealthsafety.wordpress.com/2009/10/24/autismenvironmental/
Dr. Collins,
"Stepping back" is not what is needed. "Stepping up" by government officials, scientists setting health policy decisions and research agendas is what has been needed for (really longer than) a decade now. Do the uncomfortable-but-should-have-already-been-done vaccinated verses never-vaccinated studies. Release the actual current autism rate for children by year birth cohort. Let the people see the tax-payer funded data that belongs to them for themselves.
To these officials, including those on the IACC, I would suggest that they look…
No, first… Stop pretending no one is being harmed (open your eyes), and then look at the children being harmed and look at the children who are recovering and the interventions that seem to be helping and make those options known and available, covered by real health insurance.
I think they would find that parents and some doctors of these children already have far more to offer in “combating autism” than anything the “national” research agendas will come up with in decades. Impeding access to this knowledge and these interventions seems to me to be medical neglect on a national scale.
Why is it that these "doctors" that are offering unconventional autism treatments do not do what they are morally obligated to do and demonstrate the efficacy of these supposed treatments in properly conducted trials and publish the results? If the trials are successful, many others could adopt those treatment options and help more patients. Now why do you think that is?
Also, many "unconventional" treatments are nutritional, not under the same regulation as manmade substances, but study of the existing literature on their effects and training in their use (or at least some kind of integration of nutritionist with our children's care) would be a beneficial part of pediatric medicine I believe.
Read more at: http://www.huffingtonpost.com/alison-rose-levy/a-guide-for-the-perplexed_b_327242.html?show_comment_id=33294151#comment_33294151
This is major & I can't believe people aren't discussing it more than they are.
Drug Giant Merck – “Destroy” Critical Doctors “Where They Live
"Court evidence now available on-line at the University of California library shows drug giant Merck systematically targeted “hit-lists” of doctors to discredit, neutralise or destroy critics of the safety and effectiveness of Merck’s drugs."
This included the controversial matter of Andrew Wakefield who's a British medical doctor who put children's health & safety over autism & the MMR vaccine before his career & has been hounded by big money ever since.
People here in these same type blogs who delighted in working to help discredit & smear him haven't said a word about this & I'm wondering what they're thinking?
^smile^
http://childhealthsafety.wordpress.com/2009/10/12/merckdestroydoccritics/
Be sure to check out the whole site. It's wonderful to see so many articles & educational documentaries that bury all the deception our people have been fed for far too long.
I'm a grandmother who worries for all our children & want to take this opportunity in offering thanks to Huffington Post for being here in giving our voice platform.
I notice more & more people becoming aware & speaking out & I want to thank all of you who are doing that & encourage you who are reading & silent to please add your voice when ever situations arise where you can help.
The more voices we are the more those who practice to deceive will be drowned out.
We all have to do our part for the sake of the children.
In this thanks I want to especially mention David Kirby & John Dan Stone for all the work they do in trying to keep those who are supposed to have our well being at heart, on their toes.
You guys rock & will be among the heroes who will save "US" all. Thank you so much for caring enough to do something about it. The children in future generations will some day thank you, too.
here are some papers
[Lack of association between MMR vaccination and the incidence of autism in children: a case-control study
Przegl Epidemiol. 2009
Autism and vaccination-the current evidence
J Spec Pediatr Nurs. 2009
Are Neuropathological Conditions Relevant to Ethylmercury Exposure?
Neurotox Res. 2009
Each of these studies demonstrates that there is no evidence for a link between vaccines and autism. Does it make sense now when I say that although we have not PROVEN vaccines and autism have nothing to do with each other, as of yet there is no connection.
When I said "this was besides the point" I meant that correlation is the weakest form of evidence (it isn't evidence at all, merely an indicator that something may be going on). The most important form of evidence is a biological mechanism by which vaccines may cause autism. Whatever autism is, it is most certainly not an immune disorder. I have yet to hear any proposed mechanism by which this could possibly happen. So, even if there was a vague correlation it is still a far way off from being a proven cause.
Well, we agree at least about one thing, that epidemiology is a weak form of evidence. Which is why the treatment of Andrew Wakefield is so utterly wicked - having disposed of him the medical establishment
http://childhealthsafety.wordpress.com/2009/10/09/cbs-news-research-links-kids-vaccines-brain-damage/
then hid behind some very poor epidemiology, which might well have supported him if it had been competently carried out:
http://www.bmj.com/cgi/eletters/339/sep09_1/b3658#220537
Not sure what to make of your three studies - one in Polish, one focussed on the propaganda value of nurses rather than original research, and the last rather open ended:
"In this review, we have discussed the hypothesis that exposure to thimerosal during childhood may be a primary cause of autism. The conclusion is that there are no reliable data indicating that administration of vaccines containing thimerosal is a primary cause of autism. However, one cannot rule out the possibility that the individual gene profile and/or gene-environment interactions may play a role in modulating the response to acquired risk by modifying the individual susceptibility."
John Stone, Contributing editor www.ageofautism.com
"However, one cannot rule out the possibility that the individual gene profile and/or gene-environment interactions may play a role in modulating the response to acquired risk by modifying the individual susceptibility."
OK. Fine. This study cannot rule that out, but that's not a conclusion. It's a statement that addresses the limitations of this particular piece of research.
"Scientifically speaking it is very very difficult to "proove" a negative, you usually only show a lack of evidence for a positive. After a while, and enough studies continual lack of evidence to support your conclusion is a pretty good sign that you are barking up the wrong tree."
There are two incorrect assumptions you make in the above statement:
1) Lack of evidence is relevant if the appropriate study was done -- a poor assumption
2) Volume of studies is relevant only if you assume they are all credible -- also a poor assumption
"Does it make sense now when I say that although we have not PROVEN vaccines and autism have nothing to do with each other, as of yet there is no connection."
To paraphrase, you're asking if the following statement is true:
"As of yet, there is no connection between vaccines and autism"
No, the following would be an accurate statement: "Based on the epidemiological studies done to date, there is no statistically relevant evidence of a connection between vaccines and autism."
Your statement is still incorrect because there is actually a temporal association between vaccine application and autism. There are also cases where where vaccines have been determined to have triggered Autism. Your evidence is limited to epidemiological study alone.
If there is a study which definitely shows that vaccines triggered autism please share it. If that is true, if that has definitively been shown than I take everything back.
I also appreciate the frank and scientific responses.
"And yes John, it is a red herrring-people keep bringing up mercury for no reason. First MMR, then mercury, now is Al once. Also, not that many people get the flu shot, and the newer vaccines (chicken pox, rotovirus, etc) do not have Hg. So why the rise in autism over the resent years-b/c we're giving pregnant women shots? Please, we do not even know if these shots contain perservatives."
Well, one reason to be bothered is the mercury has never really made a proper exit - it may be less but it somehow keeps sneaking back in. I don't believe these queastions are resolved - I don't really see the robust studies and I can't possibly see how you plan to go on expanding the schedule indefinitely as if there ar no risks. And yes, mercury and aluminum are highly toxic metals.
The pharmaceutical industry will never be credible so long as it takes this cavalier attitude.
John Stone, Contributing editor www.ageofautism.com
"Science, Nature, and NEJM are "garbage links". What do you consider appropriate source material for the presentation of original research?"
The links were garbage, not because of the sources - but because they failed to establish your point - I saw nothing which would explain why these mutations would suddenly occur en masse over a few years, which had only been rarely seen before. Collins doesn't seem to think this can happen either.
"As for parental age, you continue to regress toward some perception that all cases of ASDs are all alike, all driven by the same factors. We know this is not true."
Tis is a non-sequitur just put up to confuse - I made no claim that all ASDs are alike..
Uggg. No John no! No, no, no!
The point and only point of the links is to explain to you what CNVs are and how they relate to autism. That's it. We didn't have the technology to identify these things, but until a few years ago (and so we obviously didn't know about them). CNVs exist. Flat out. It is a real biological phenomenon. It has been shown that correlations of types of CNVs exist in autistic and schizophrenic populations. There is no denying this fact (unless you chose to flagrantly be irrational).
"Tis is a non-sequitur just put up to confuse - I made no claim that all ASDs are alike"
Right, which is why in your previous quote you say "I saw nothing which would explain why these mutations would suddenly occur en masse over a few years, which had only been rarely seen before", as if all diagnosed cases today are going to be attributed to this one underlying cause.
But you still haven't shown why these mutations whether multiple or single (I am not prejudiced) would suddenly occur much more?
I am interested that you readily agree that you set out to confuse. Having withdrawn the point about multiple types of autism in relation to parental age, I now stand accused equally irrelevantly in regard to CNVs.
The whole point of the exercise for you as far as I can see is to make the exchange unintelligible to outsiders. Now, why would you want to do that?
John Stone, Contributing editor www.ageofautism.com
No. That is not correct. Read John.
"Although these new genes will teach us much about how the brain develops and functions, we are not likely to find many single-gene Mendelian disorders in psychiatry. Even in autism, which has the highest heritability of any psychiatric disorder, as many as 10 genes have been suggested on the basis of modeling the inheritance pattern (15). Rather than looking for rare mutations in genes with big effects, complex genetic disorders involve relatively common variations in multiple genes, each of which has a weak effect."
http://ajp.psychiatryonline.org/cgi/content/full/160/4/616?etoc
Well, that was in 2003 - although what he says here doesn't absolutely preclude the view he seems later to have adopted - in the light of science or events - he may have been being over-optimistic. In 2006, for instance, he acknowledged that there was a real rise in autism, whereas the orthodoxy had very much been (quite irrationally) that incidence was static.
In general scientists are very much more sceptical of genetics to solve all our problems than they were a few years ago.
A lot of time has been wasted by people denying the obvious, mine in particular.
John Stone, Contributing editor www.ageofautism.com
"Now as evidence you cite the suppressed clinical histories of our children. What is this? How is this medical evidence for something? I am not dismissing it, I am genuinely curious I have never heard of this."
Disingenuous. The message to any parent that witnesses their child go down after a vaccine event is "prove it!", with the medical profession and the courts tipped against you. You illustrate the prejudicial mind-set impeccably.
"If i were going to be blunt, I would say I would rather my child have autism than die from whooping cough."
Not much of a choice, is it?
John Stone, Contributing editor www.ageofautism.com
Not much of a choice, is it?"
My first post reacting to this was deleted by the moderators. I'll re-phrase then.
Comparing the preventable death of a child with one who has been diagnosed as on the spectrum and very different, John. Most parents would take that choice, the life of their child over a tragic loss.
Well, one question that we ought to be able to ask uncontentiously is whether medical practice is as safe as it might be. If you are not allowed to discuss the damage, subjected to the aggressive dismissal that we get from the likes of you and Seldon, and the medical profession at large then the practice will be inherently hazardous - science conducted by bullying. If you are trying to make out that autism is a trivial condition then you are obviously clueless - and you are playing the moral superiority card with people who have to live with the consequences. It is not an attractive performance.
There are other issues relating to pertussis vaccine - for instance, whether it actually works. The present practice is getting to be to give ever more doses because it doesn't, or not very well.