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Congress says no to misleading autism information

16 Jul

Last year Mr. Mark Blaxill and Mr. David Kirby were given the privilege to misinform members of the U.S. government and their aids. Besides the fact that Mr. Blaxill has yet to retract his position (and pseudo-papers) claiming that autism is mercury poisoning, and the mish-mash that Mr. Kirby makes of science, there is the curious incident of the misquoted quote. Mr. Kirby made a serious error in his talk, misquoting a statement by the NIH, and was caught by a congressional staffer (an M.D. who was obviously well prepared).

It isn’t like this sort of inaccuracy was something new. Mr. Kirby was having a lot of difficulty with accuracy about this subject around that time. Epiwonk discussed in great detail how serious Mr. Kirby’s misinterpretations are here and here.

I don’t really understand Mr. Kirby sometimes. Epiwonk’s first blog post caused Mr. Kirby to admit he made a mistake and “pull” his blog post. Mr. Kirby posted a second, with this statement:

NOTE: My original post on this topic mischaracterized the 2003 CDC vaccine investigation as an “Ecological Study,” which it was not. I am reposting this piece to reflect that information accurately, but also to point out that many of the weaknesses identified in the CDC’s data and methods apply to the published 2003 “retrospective cohort” study, as much as they do to any future “ecological” ones. I regret and apologize for the error.

He apologizes for the error. He removed the direct link to the post from his main webpage. But, did he pull the blog post which even he declares was “in error”? Nope. It is still on the Huffington Post for all to see. Hence my quotes in the phrase “pull” his blog post.

What about the misquote in Mr. Kirby’s lecture? Well, last I checked it was still in the power point presentation he has on his website. No comment, no correction.

I’m sure Mr. Kirby is planning on being more careful this year. This year? Yes, he and Mr. Blaxill are being hosted to give another briefing to congress.

Last year, Mr. Kirby and Mr. Blaxill packed a small room. This year, they seem to be struggling to get people to fill even that small space. How do I know? Well, the good people at the Age of Autism blog have supplied us with a list of the people in the Congressional Coalition for Autism Research and Education (C.A.R.E) who will be attending, and who attended last year but not this year.

Want to run some stats? My unofficial and highly unscientific accounting based on the information on the Age of Autism blog:

C.A.R.E. has 11 offices attending who saw the briefing in 2008 returning in 2009.

However, C.A.R.E also has 26 offices declining the opportunity to observe Mr. Kirby and Mr. Blaxill for a second time. (including, oddly enough, Dan Burton)

Yep, you read that right. 70% of the C.A.R.E. offices who heard the briefing last year have decided to give it a pass this year. I actually doubt it is because Mr. Kirby was caught in a fabricated quote last year. My guess is that it’s just because Mr. Kirby and Mr. Blaxill basically had little accurate information of value to say last year, and little different to say this year.

Continuing with the stats:

C.A.R.E. has 8 offices attending for the first time in 2009.

C.A.R.E. also has 110 offices who did not attend in 2008 and are not attending now.

Summarizing these numbers, we see that, by far, most of C.A.R.E is not attending. ( I count 17 offices attending out of 153. Or, 89% are not attending).

Again, I don’t think it is because of Mr. Kirby’s lapse. The lack of a clear, scientifically sound message is much more likely the reason. Congress heard what Mr. Kirby and Mr. Blaxill have to say and there is no point in hearing it again.

Last year’s congressional briefing was the subject of three blog posts here:

Vaccines on the Hill. Vaccines on the Hill II. Vaccines on the Hill III.

New autism prevalence 1.5% in UK

31 May

A new study published (officially) tomorrow discusses ‘Prevalence of autism-spectrum conditions: UK school-based population study’.

Its an interesting study for quite a few reasons. Firstly, it offers a new autism prevalence of 1.5% (1 in 66). That’s the message that the press will no doubt focus on (and, as Kristina blogs, already have). And I’ve absolutely no doubt that our friends from JABS, Age of Autism and various other anti-vaccine fringe groups will be painting this as part of their ‘evidence’ that we’re in the throes of a massive autism ‘epidemic’.

However, the paper itself is very nuanced and is clear in its messages. However, to be absolutely sure I was correct in the conclusions I drew I had an email conversation with Professor Baron-Cohen before writing this entry.

Point 1: This study confirms the baseline rate of 1% as asserted by the Baird et al paper

Baird et al (2006) asserted that their findings would offer a baseline rate of autism prevalence, that prevalence being 1%. This figure was ascertained by looking at a SEN population of a South Thames cohort. Baron-Cohen et al (2009) confirmed that figure:

These authors took the decision to screen only the ‘at-risk’ population and assert that their estimate should be regarded as the minimum figure. Our results from screening the entire school-aged population support this assertion…

In other words Baron-Cohen et al also looked at the ‘at risk’ population and also found a prevalence of 1%.

Point 2: Baron-Cohen et al identify a further 0.5% to make a total prevalence of 1.5%

What is different about the Baron-Cohen paper is that as well as looking at the ‘at risk’ group they _also_ looked at mainstream schools. Using the CAST screening tool, this study identified a previously unknown prevalence of 0.5% within this mainstream environment.

Our results from screening the entire school-aged population…highlights the reality that there are children with autism- spectrum conditions, notably children with high-functioning autism, who remain undetected in primary schools. These children may use strategies to mask their social and communication difficulties such as going to the computer room at playtime. They may be quiet and cooperative at school and not difficult to manage and therefore teachers may not be aware that they have difficulties. Primary schools in the UK are typically small and foster a supportive and nurturing environment. It may not be until these children move to secondary school that their true differences are revealed.

Often I have heard people asking how it is possible that people with autism could possibly be missed. The Baron-Cohen et al paper gives a graphic answer to that question.

Point 3: Caution should be applied in assuming that results ascertained in Cambridgeshire could be applied across the rest of the country

The area is very affluent within the UK and has excellent autism resources for autistic children. It is a given that many families have moved into the area to try and exploit those services. This would have a positive effect on prevalence that is not consistent with the majority of the UK.

Our study does not report on migration of families but given the level of services for and awareness of autism-spectrum conditions in Cambridgeshire, this remains a distinct possibility. Caution should therefore be employed in assuming that the figures reported here can be applied nationwide.

Professor Baron-Cohen and I had the following exchange about the autism ‘epidemic’:

KL: What would you say to someone who says that your paper is strong evidence of an ‘autism epidemic’ (because you know they will)?

SBC: I think the term ‘epidemic’ of most value in relation to contagious diseases, which autism is not.

KL: Can I rephrase my question? Would you say your findings support the idea that there has been a true rise in prevalence? As oppose to the seven items you say have caused a seeming rise in autism earlier in your paper?

SBC: There has been a real rise in prevalence but what is at issue are the causes of this rise. In the paper we summarize the quite ordinary factors that might have driven the rise, such as better recognition, growth of services, and widening diagnostic criteria.

So next time someone who likes to bandy about the phrase ‘epidemic denier’ like he knows what he’s talking about when he claims that the ‘epidemic deniers’ say that autism is just better recognised these days, tell him there’s a lot more than just one reason:

Prevalence estimates for autism-spectrum conditions have shown a steady increase over the past four decades. In 1978, the consensus estimate for classic autism was 4 in 10 000; today autism-spectrum conditions (including classic autism) affect approximately 1% of the population. This massive increase is likely to reflect seven factors: improved recognition and detection; changes in study methodology; an increase in available diagnostic services; increased awareness among professionals and parents; growing acceptance that autism can coexist with a range of other conditions; and a widening of the diagnostic criteria.

Why Generation Rescue shouldn’t be on the IACC

27 May

I have been very critical of the lobbying efforts of Generation Rescue. I have found their actions to be far from helpful in the struggle to obtain quality research for people with autism. One issue I haven’t covered is the fact that Generation Rescue has been lobbying hard for a seat on the Interagency Autism Coordinating Committee (IACC).

The IACC, as you might guess, coordinates research efforts amongst various government agencies. They do this by creating a “strategic plan” which puts forth initiatives that should be funded. For example, one “short term goal” listed on the Strategic Plan is:

Launch at least two studies to assess and characterize variation in adults living with ASD (e.g., social and daily functioning, demographic, medical and legal status) by 2011. IACC Recommended Budget: $5,000,000 over 3 years.

We need a lot more research like that if we are to serve our existing adult population and prepare for the kids of today to transition into adulthood.

This sort of research, oddly enough, isn’t supported by many of the autism advocacy organizations. Instead, they see the IACC as a pathway to their singular goal: recognition of the supposed link between vaccines and autism.

The fact of the matter is simple–Generation Rescue should not hold a seat on the IACC. The reasons are simple, and are below:

1) Generation Rescue’s position is already represented on the IACC.

I have never heard any complaints from the Generation Rescue team about Lyn Redwood. Lyn Redwood represents, quite vocally mind you, the “autism is caused by vaccines” segment of the community. She pretty much dominates much of the discussion, steering it towards vaccines as much as possible.

Ms. Redwood is ably assisted in steering all discussions towards vaccines in one of the working groups by Mark Blaxill. Again, I have never heard anyone from Generation Rescue say, “Dang, that Mark Blaxill just doesn’t get our point of view!”

So, if the Generation Rescue position is already represented, why give GR an official position?

2) Just because there are multiple organizations, doesn’t mean that the IACC has to include them all.

Besides their position on vaccines, what do Generation Rescue, Safe Minds, TACA and the National Autism Association have in common?

You can’t join them and vote for their leadership.

I just see these as different faces to the same overall autism group. Actually, I see them as mostly vaccine oriented advocacy groups, not autism advocacy groups, but the point is the same: why give each of these groups their own seat on the IACC.

Think for a moment—why should a few people be allowed to create an “organization” and ask for separate representation? If each subgroup wants to have control over their own budgets and give each member big titles, that’s just fine. But, when it comes to representation on a government body, why should every faction of what is, really, one big vaccines-cause-autism group be given a seat at the table?

Yes, this is much like item (1)—all of these groups already have their opinions represented by Lyn Redwood. There is no need or value in giving them more seats on the IACC.

3) This would lead to even more wasted time.

The IACC is a group that has very limited time to work on a research plan. Work being the operative word. Already, a LOT of time is taken up carefully crafting each and every phrase that might give credence to the vaccines-cause-autism story.

Imagine now if even more time were taken up in these discussions. Please, no. There is a great deal of expertise represented by the scientists on the IACC. We as taxpayers and as members of the greater autism community deserve to benefit from their expertise. We don’t need to hear twice as much (or more) vaccine-oriented discussions.

4) Generation Rescue has clearly demonstrated itself to be anti-science.

Generation Rescue’s recent “study” on vaccines and health outcomes around the world was, in a word, dishonest. The fact that they would promote such a manipulation of facts should disqualify them from sitting on a research based committee.

They either don’t understand research, or they are willing to misuse “research” to promote a political agenda. Either way, I don’t see why good researchers in the field should have to share a committee with Generation Rescue. Moreover, I really don’t see how Generation Rescue can lead the way in directing autism research given their demonstrated lack of understanding of the principles of research.

5) They don’t want their voice heard, they want to be able to outvote the scientists.

As noted above, Generation Rescue’s positions are very clearly communicated on the IACC already by Ms. Redwood. What Generation Rescue wants is a large enough voting block to outvote the scientists on the committee.

Read that again—they want to outvote scientists on a committee designed to coordinate research.

Sorry, you don’t vote down science.

And, once again, why should all the different heads of the same beast (TACA/Generation Rescue/SafeMinds/NAA) be treated as separate entities?

6) They are rude.

The culture of Generation Rescue is not one of working as a team with others. You either agree with their position, or people shout “BullShit” loudly at you.

Yes, there is already rude behavior on the IACC. Mark Blaxill, for one, has spent considerable amounts of time calling anyone who disagrees with his untenable position on mercury “Epidemic Denialists”. We don’t need more of that, and Generation Rescue goes well past that level on the impoliteness scale.

Sorry, I just can’t find any advantage to having Generation Rescue represented on the IACC. I can see a LOT of disadvantages, though

Richard Deth – gambling man

27 Apr

Maybe you don’t know, or have forgotten who Richard Deth (pronounced to rhyme with ‘teeth’) is.

He is:

Richard Deth, Ph.D., is a neuropharmacologist, a professor of pharmacology at Northeastern University in Boston, Massachusetts, and is on the scientific advisory board of the National Autism Association. Deth has published scientific studies on the role of D4 dopamine receptors in psychiatric disorders, as well as the book, Molecular Origins of Human Attention: The Dopamine-Folate Connection. He has also become a prominent voice in the controversies in autism and vaccine controversy, due to his theory that certain children are more at risk than others because they lack the normal ability to excrete neurotoxic metals.

Deth became ‘hot property’ in the anti-vaccine autism groups after publishing a paper (with which there were numerous issues – see Bart Cubbins excellent video for details) that was funded by one of those anti-vaccine groups – Safe Minds. Interestingly, during an exchange with Kathleen documented at neurodiversity.com, it also came to light that Richard Deth was registered as a paid expert witness in the vaccine litigation omnibus proceedings. Professor Deth said:

“I thank you for alerting me to the fact that my name was included on that expert witness list. It was done so without my knowledge or permission. It might be related to a phone call from that law office that was logged to my office while I was away on vacation in February. I never returned the call.”

To which Kathleen replied replied:

“It was quite an oversight for the attorneys to fail to confirm your willingness to serve in that role prior to naming you as a plaintiffs’ expert in the Petitioners’ Initial Disclosure of Experts, and filing that document with the Court of Federal Claims. However, their certainty is understandable, given your indication during our brief telephone conversation that the lawyer with whom you discussed the matter was “Andy” Waters, lead attorney in the thimerosal cases.”

Deth didn’t comment any further. As many have discovered, if you want to go head to head with Kathleen you better make sure your i’s are dotted and your t’s are crossed.

One of the statements Deth made during their exchange stood out to me at the time.

…I would like to make a virtual wager that within the next 18-24 months scientific evidence will make the thimerosal-autism link a near certainty. If you are willing, I’ll let you name the stakes.

Deth sent his email on March 22 2006. Luckily for him, Kathleen took pity on him and declined his rather gauche offer.

So what does this mean? What does it prove?

Why, nothing. Nothing at all. I just wanted LB/RB readers to be perfectly clear that a strong _belief_ in a scenario doesn’t make one right. In fact, when we look at all the recent evidence for the various beliefs of the various anti-vaccine/autism groups – from the prediction that the Omnibus Autism cases would be a walkover for them, to David Kirby’s certainty that thiomersal causation would be vindicated by CDDS data in 2005, then 2007, to this example of ego from Richard Deth what we see is a clear picture of a set of people who are consistently and unerringly wrong. This is because they simply cannot see the science right in front of them. Even such an august figure as Richard Deth, Ph. D.

Why Generation Rescue doesn’t need a seat on the IACC

22 Apr

Generation Rescue has been lobbying hard for a seat on the Interagency Autism Coordinating Committee
 (IACC).

The IACC, as you might guess, coordinates research efforts amongst various government agencies. They do this by creating a “strategic plan” which puts forth initiatives that should be funded. For example, they f

For example, one “short term goal” listed on the Strategic Plan is

Launch at least two studies to assess and characterize variation in adults living with ASD (e.g., social and daily functioning, demographic, medical and legal status) by 2011. IACC Recommended Budget: $5,000,000 over 3 years.

Groups like Generation Rescue, Safe Minds, the National Autism Association and TACA would like to see the Strategic Plan state that autism is caused by vaccines and call for research on the topic. Well, that’s one opinion. One that is already well represented on the IACC. That is only one reason why adding an IACC seat for Generation Rescue would be a bad idea. Here are the ones that come to mind readily:

1) Generation Rescue’s position is already represented on the IACC.

I have never heard any complaints from the Generation Rescue team about Lyn Redwood. Lyn Redwood represents, quite vocally, the “autism is caused by vaccines” segment of the community. She pretty much dominates much of the discussion, steering it towards vaccines as much as possible.

So, if the Generation Rescue position is already represented, why give them an official position?

2) Just because there are multiple organizations, doesn’t mean that the IACC has to include them all.

Besides their position on vaccines, what do Generation Rescue, Safe Minds, TACA and the National Autism Association have in common?

You can’t join them and vote for their leadership.

Sorry, I just see these as different faces to the same overall autism group. Actually, I see them as mostly vaccine oriented advocacy groups, not autism advocacy groups, but the point is the same: why give each of these groups their own seat on the IACC.

Think for a moment–why should a few people be allowed to create an “organization” and ask for separate representation? If each subgroup wants to have control over their own budgets and give each member big titles, that’s just fine. But, when it comes to the IACC, why should every faction of what is, really, one big group be given a seat at the table?

Yes, this is much like item (1)–all of these groups already have their opinions represented by Lyn Redwood. There is no need or value in giving them more seats on the IACC.

3) This would lead to even more wasted time.

The IACC is a group that has very limited time to work on a research plan. Work being the operative word. Already, a LOT of time is taken up carefully crafting each and every phrase that might give credence to the vaccines-cause-autism story.

Imagine now if even more time were taken up in these discussions. Sorry, no. There is a great deal of expertise represented by the scientists on the IACC. We as taxpayers and as members of the greater autism community deserve to benefit from their expertise.

4) Generation Rescue has clearly demonstrated itself to be anti-science.

Generation Rescue’s recent “study” on vaccines and health outcomes around the world was, in a word, dishonest. The fact that they would promote such a manipulation of facts should disqualify them from sitting on a research based committee.

They either don’t understand research, or they are willing to misuse “research” to promote a political agenda. Either way, I don’t see why good researchers in the field should have to share a committee with Generation Rescue.

5) They don’t want their voice heard, they want to be able to outvote the scientists.

As noted above, Generation Rescue’s positions are very clearly communicated on the IACC already by Ms. Redwood. What Generation Rescue wants is a large enough voting block to outvote the scientists on the committee.

Read that again–they want to outvote scientists on a committee designed to coordinate research.

Sorry, you don’t vote down science.

6) They are rude.

The culture of Generation Rescue is not one of working as a team with others. You either agree with their position, or people shout “BullShit” loudly at you.

Yes, there is already rude behavior on the IACC. Mark Blaxill, for one, has spent considerable amounts of time calling anyone who disagrees with his untenable position on mercury “Epidemic Denialists”. We don’t need more of that, and Generation Rescue goes well past that level on the impoliteness scale.

Sorry, I just can’t find any advantage to having Generation Rescue represented on the IACC. I can see a LOT of disadvantages, though.

Thrown under the bus…but for a good cause, right?

21 Apr

America is a wonderful place. Where else can someone publish absolute garbage, refuse to retract it, accuse the government of being involved in a massive conspiracy–and still end up on a government committee?

I am speaking of Lyn Redwood. She is one of the coauthors on ‘Autism: a novel form of mercury poisoning’. This was ‘published’ in Medical Hypotheses. I put ‘published’ in quotes because Medical Hypotheses is a pay-to-publish pseudo-journal that has no review (peer or otherwise) at all. OK, the editor does check that the authors are talking about something medical, and makes sure that some sort of narrative is put together. But, scientifically? No review. Too many people, especially those parents with new autism diagnoses for their children, are unaware that “Medical Hypotheses” ‘papers’ have no place next to actual research papers.

If that piece of junk science wasn’t enough, Ms. Redwood was also a co-author on another less-than-worthless Medical Hypotheses ‘paper’, Thimerosal and autism? A plausible hypothesis that should not be dismissed. The first author on that “paper” was Mark Blaxill. Truly, one of the scary moments in the Omnibus proceeding came when the research head of ARI (Autism Research Institute) referred to Mark Blaxill as “brilliant”. No exaggeration–that was a frightening thought to this listener. Mr. Blaxill is probably rather bright and likely good at whatever he does professionally. But the idea that the information is traveling from him to the research head of the Autism Research Institute rather than the other way around is just scary.

The time to pay-to-publish retractions of these papers was years ago. Yet, both papers are still out there, and new parents usually won’t find out for a long time that those papers a junk.

Besides promoting bad science, what do Ms. Redwood and Mr. Blaxill have in common? Well, the Interagency Autism Coordinating Committee, for one thing.

Ms. Redwood sits on the Interagency Autism Coordinating Committee. This group helps coordinate the US Government’s research efforts on autism. Rather that fight for better understanding and services for, say, adults, the poor, or minorities with autism, Ms. Redwood filled meeting after meeting (after meeting) with struggles to get the wording of the Strategic Plan as close as possible to a government admission that vaccines cause autism.

Mark Blaxill sits on one of the working groups for the IACC, probably placed there by Ms. Redwood. Mr. Blaxill, also a co-author on a number of papers that any reasonable person would have retracted by now, has wasted considerable meeting time with long, insulting ramblings. I know there are people who appreciated Mr. Blaxill’s speeches, but I consider likening the other people on the committee to holocaust denialists insulting. Maybe I misinterpreted his repeated use of the phrase “Epidemic Denialists”. If so, I bet I’m not the only one. Somehow, I don’t think I’m wrong. It appears to be an insulting and deliberate choice of phrases.

Unfortunately for the undercounted communities like adults with autism, the poor with autism, minorities with autism–a number of our own–they present an “inconvenient truth” to people like Mark Blaxill and Lyn Redwood. They demonstrate that the numbers groups like SafeMinds use to promote the faux autism epidemic are terribly flawed. If we are still under counting people with autism in the U.S., how can we use the counts from the California Regional Centers or from education data so far as “evidence” of an “epidemic”?

I know I wrote about this issue recently. But, reading the expert report by Dr. Rodier, and writing about it, I realized anew that a few individuals have caused this harm. And, those few individuals could (and should) work hard to correct that harm.

So, in place of calling on the IACC to fund research that could help the under counted, Ms. Redwood and Mr. Blaxill got this paragraph:

Research on environmental risk factors is also underway. An Institute of Medicine workshop held in 2007 summarized what is known and what is needed in this field (Institute of Medicine of the National Academies, 2007). Numerous epidemiological studies have found no relationship between ASD and vaccines containing the mercury based preservative, thimerosal (Immunization Safety Review Committee, 2004). These data, as well as subsequent research, indicate that the link between autism and vaccines is unsupported by the research literature. Some do not agree and remain concerned that ASD is linked or caused by vaccination through exposure to Measles Mumps Rubella (MMR), imposing challenges to a weakened immune system, or possibly due to mitochondrial disorder. Public comment to the Committee reflected opposing views on vaccines as a potential environmental cause. Those who are convinced by current data that vaccines do not play a causal role in autism argue against using a large proportion of limited autism research funding toward vaccine studies when many other scientific avenues remain to be explored. At the same time, those who believe that prior studies of the possible role of vaccines in ASD have been insufficient argue that investigation of a possible vaccine/ASD link should be a high priority for research (e.g., a large-scale study comparing vaccinated and unvaccinated groups). A third view urges shifting focus away from vaccines and onto much-needed attention toward the development of effective treatments, services and supports for those with ASD.

Let’s just pull that last sentence out for emphasis, shall we?

A third view urges shifting focus away from vaccines and onto much-needed attention toward the development of effective treatments, services and supports for those with ASD.

It’s odd to me–I would have fought that language if I were Lyn Redwood. I would have pointed out that I have a broader perspective than just vaccines, and that I also care about development of effective treatments, services and supports. Isn’t it just a little sad that the people who are pushing the vaccine connection don’t have the view that effective treatments, services and supports for those with ASD’s are a top priority?

But, it wasn’t their top priority. It still isn’t. In the end, Lyn Redwood and Mark Blaxill, people who are on the IACC to represent the interests of the entire stakeholder community, threw the underrepresented autistic communities under the bus.

The vaccine debate has a real cost

31 Mar

Of course, this isn’t news. But usually the cost is characterized in the danger to public health.

What about the cost to people with autism? Here’s a blog post from the Simons Foundation. (as an aside–there is a real autism organization). They are quoting Cathy Lord and Paul Shattuck.

Given the diversity of the panel’s members, the strategic plan was, unsurprisingly enough, hotly debated, and continues to be scrutinized.

Most of the debate centers around the plan’s emphasis on environmental risk factors. Lord says this came at the cost of research on more worthwhile topics, such as how to expand treatment services to low-income families — a project for which she was hoping to be funded.

“It’s gone, just gone. I was pretty astonished to see that that had disappeared,” she says.

The report also doesn’t emphasize studying autism’s course beyond childhood, notes Shattuck. “The amount of money that goes into understanding services and aging and supporting people in their daily lives seems disproportionately small,” he says.

One of the problems with the vaccines-cause-autism groups is that they really don’t advocate for people with autism. They have abandoned entirely people of low income and minorities (except where they can be used for political gain).

It isn’t just that groups like SafeMinds, Generation Rescue and the rest can’t be bothered to spend the time worrying about minorities or adults. It’s the fact that the data those groups use to support the “epidemic” makes ZERO sense when you consider minorities.

Consider this: the “rate” of autism is 0.3 per 1,000 for Hispanics in Wisconsin, but 10.6 for Whites in New Jersey.

Why isn’t Generation Rescue calling for an investigating the Hispanics of Wisconsin? Shouldn’t they want to know what is “protecting” that subgroup from autism?

They don’t care, they don’t want to bring attention to the Hispanics in Wisconsin (or the under represented minorities across the nation), because it blows a big hole in the “epidemic”. Obviously we still aren’t counting all the people with autism in our prevalence estimates. How can we rely on the historical data that shows an “epidemic” if we aren’t doing a good job even now?

We’ve covered this many times in the past. It is one thing when the damage caused is more abstract. But when it become very real, when minorities are being left out in the cold, it is an outrage.

Hours and hours were spent in the IACC meetings wordsmithing the vaccine language. To groups like SafeMinds and people like Lyn Redwood, the Strategic Plan was a political document. It was a statement by the government, and it was critical to get as much “admission” of autism being caused by vaccines as was possible. So what if another generation of minorities gets mislabeled with Intellectual Disability or some other Special Education category when SafeMinds was able to get the IACC to admit that many parents think vaccines cause autism?

This is what happens when psuedo “Vaccine-injury” advocates pretend to be Autism advocates and take seats at the table. Lyn Redwood put her own interests and those of her organizations ahead of the well being of people with autism.

That’s just plain wrong.

What you talking about, Safe-Minds?

13 Feb

And the spin continues on the Omnibus decisions. Anyone surprised?

This time, Safe-Minds has chimed in on the Omnibus decisions with:

Federal Vaccine Court Rules Against Autism Families: Government’s Refusal to Fund Sound Science Stacks Deck Against Vaccine-Injured Children.
One more reason to distrust the government’s vaccine program, says SafeMinds

The main theme is a rather contradictory one:

The denial of reasonable compensation to families was based on inadequate vaccine safety science available to the court.

How many times have we all heard from groups like SafeMinds that the science is very conclusive?

If the science is inadequate, why are groups such as SafeMinds and Generation Rescue recommending chelation as a therapy for autism?

As a friend of mine used to say to other drivers while driving down the highway, “Pick a lane, buddy”. Either you got the science or you don’t. Seems like you don’t.

SafeMinds perseverates on the IACC. I do to, so I can’t blame them for that. I can blame them for misrepresenting what happens in IACC meetings:

Last month, the government-dominated Interagency Autism Coordinating Committee blocked critical vaccine-autism research studies from moving forward even though they had been requested by their own scientific advisors and autism advocates.

Uh, one of the BIG problems with the proposed vaccine research was precisely the fact that they were not recommended by the scientific advisory subcommittees. Nice spin, though.

and, again on the IACC, SafeMinds states:

The director of the NIH institute in charge of autism studies, Dr. Tom Insel, has admitted that HHS has a conflict of interest preventing NIH from allowing autism-vaccine science due to the court cases.

Uh, no. He raised the question of whether there is a conflict of interest. He didn’t “admit” to any conflict of interest.

I am actually getting very tired of this claim made about the vaccine court:

Many of these cases were quietly settled by the government so the public is not aware of them.

Sounds oh so conspiratorial.

Of course the government is quiet in the decisions. Quiet in they don’t advertise or call press conferences. What they do is put them on a public website. That is appropriate.

Is it the government’s fault that the vaccine-autism “advocates” never checked? Seriously, you are working on cases costing many millions of dollars and no no seems to have gone through the previous cases searching for the word “autism”?

Is it the government’s fault that the lawyers who worked on the previous cases involving autistics who were injured by vaccines weren’t savvy enough to think of communicating that fact to the Omnibus lawyers? C’mon, at least one of them is working on the Omnibus proceeding!

SafeMinds, you and your sister organizations found out about the other cases from Kathleen Seidel! That’s who is doing your homework.

Even leading vaccine proponents have accused the CDC of carrying out safety research “on the cheap,” and two major systematic reviews of vaccine research by the world renowned Cochrane Collaboration have found studies to be of “poor quality” and “inadequate.”

Who are these “leading vaccine proponents”? And, how many “leading vaccine proponents” think that a lot of time and money is spent on vaccine safety research?

That last sentence is why “..and the whole truth” is included in swearing in witnesses. How many studies did they find to be “poor quality”. The way it is phrased, SafeMinds is trying to make it seem like all the research is substandard. Ironic given that SafeMinds still has the Hornig mouse study on its website with no mention of the MIND study that refuted it.

That said, the Special Masters who wrote the decisions for the Omnibus hearings made it very clear that they had good evidence, good studies to work from.

Here’s a comment that goes to the heart of the future problems:

“The government must fund an extensive vaccine safety program, including studies of the health outcomes of vaccinated and unvaccinated groups,” stated Sallie Bernard, executive director of SafeMinds. “Trust in immunization will continue to deteriorate without the perception of a fair hearing. It is time for a neutral agency to oversee vaccine safety.”

Ms. Bernard: this was a fair hearing. The petitioners were given many years of extra time to get the research that they needed. Much research was done on vaccine safety in regards to autism in that time, and it only helped the defendents.

Also, trust in vaccinations may continue to deteriorate because of the publicity campaigns you and your sister organizations are putting on. Own the responsibility for your own actions.

The vaccine-autism org spin on the IACC

2 Feb

The vaccine-oriented autism orgs are claiming that the IACC acted improperly when they removed the vaccine initiatives from the Strategic Plan. They claim that this wasn’t on the agenda. Uh, yeah.

Let’s take a second look at this, eh? Because, from what I can see, not only is there a lot of spin being added to this story, the spin is filled with hypocrisy.

These vaccine initiatives were added at the December IACC meeting. Here’s the agenda for that meeting. I don’t see where it says, “Add new initiatives”.  And, yet, here they are in the draft of the Plan.  Note that the vaccine initiatives are in all red–they were added at that meeting.

That’s not “according to procedure”, if we take the SafeMinds/TACA/GR/NAA spin where it has to be clearly in the agenda.

It isn’t even “according to procedure” in the real sense.  Science based initiatives are supposed to be generated by subcommittees who vet them based on need and whether they have a reasonable scientific basis.

Or, to put it another way–vaccines were added to the Plan at the last minute as part of an end-run around the system by Lyn Redwood. And, now, she and the vaccine-orgs are complaining that the removal of these initiatives is part of a “improper action” or some such nonsense because it wasn’t in the agenda.

Not merely a weak argument, but hypocritical as well.

Let’s take a look at some similar actions.  The January IACC meeting included an attempt by Lyn Redwood to basically rewrite the introduction to the Plan. (By the way, one of the IACC members called Lyn Redwood out (politely) on her constant attempts to rewrite the Plan, noting how this has delayed the entire process considerably. Thank you, whoever you are.)

Let’s take a look at the agenda for the January meeting. Do you see any mention of rewriting the introduction in there? I don’t. So, what do we have here? We have Lyn Redwood attempting to circumvent the procedure and introduce new initiatives outside of the process. Then, when they are removed, she cries foul, claiming that others are working outside of the process?!?

Clearly, this is a political move.  Adding vaccines to the Plan was a political move, not a scientific move.   The complaints lodged against the removal of the vaccine initiatives are political, not reality based.

And, while all this plays out, good research is stalled.

That’s a complete shame.

Strategic Plan: fact and fiction

2 Feb

If you’ve been reading some of the autism blogs lately, you’d think that the only question that the NIH has to consider on autism is whether to study vaccines. That’s because, it’s all the autism organizations seem to be talking about with respect to the IACC and the NIH.

Yes, I’ll admit I’ve contributed to the pervasiveness of the vaccine discussion by responding to those blogs. Just to get that out.

The big stink lately is the fact that the vaccine-specific initiatives were voted out of the IACC’s Strategic Plan in January. Autism Speaks and the small groups like Generation Rescue, NAA, TACA and SafeMinds (as an aside—why are there so many clone orgs? Do they really represent different views?) all issued statements or harsh words about this change.

The story being propagated is basically this: “All the money is going into genetic research. We asked for this small thing and they blocked it”

So, let’s do something different than the vaccine-orgs, eh? Let’s look at some of the initiatives that are still in the Plan. Let’s discuss what is really happening on that front. There is a lot more to discuss about the reality of the Plan, but I figure since no one wants to actually look at the initiatives, it’s fertile ground.

The Plan is divided into section (think chapters) according to “questions”. Let’s look at a few sections and pick a few initiatives out to consider.

Question 1: When should I be concerned?

Identify a panel of biomarkers that separately, or in combination with behavioral measures, accurately identify, before age 2, one or more subtypes of children at risk for developing ASD by 2014. Estimated cost: $30,000,000 over 5 years.

Develop at least five measures of behavioral and/or biological heterogeneity in children or adults with ASD, beyond variation in intellectual disability, that clearly relate to etiology and risk, treatment response and/or outcome by 2015. Estimated cost: $40,000,000 over 5 years.

Holy Moly! I’d expect end-zone victory dances over something like that–$30M for biomarkers? Another $40M that includes biological heterogeneity? Isn’t this exactly what these organizations claim they want—recognition and research into the biological underpinnings of autism?

Instead of victory dances, we get silence from the vaccine-orgs on these initiatives. It’s all “what happened to vaccines!”

Here’s one that I wouldn’t expect them to trumpet, but my eye was captured by this:

Validate and improve the sensitivity and specificity of new or existing screening tools for detecting ASD through studies of the following community populations that are diverse in terms of age, socio-economic status, race, ethnicity and level of functioning by 2012. Estimated cost: $5,000,000 over 3 years.

My eye was captured, but that’s because I am really into the idea of identifying underserved populations like adults, and racial and ethnic minorities. I don’t expect the vaccine-orgs to support this since admitting there are underserved populations threatens the “epidemic”, so I didn’t expect the vaccine-oriented organizations to comment on that.

OK, let’s move on to the next “question”:

Question 2: How can I understand what is happening?

Support at least four research projects to identify mechanisms of metabolic and/or immune system interactions with the central nervous system that may underlie the development of ASD during prenatal-postnatal life by 2010. Estimated cost: $6,000,000 over 4 years.

Whoa! Did I read that correctly? $6M for studies on immune system interactions in the development of ASD? And, from the vaccine-orgs that called for this research? The sound of one hand clapping?

OK, the really big study for this section is this one:

Complete a large-scale, multi-disciplinary, collaborative project that longitudinally and comprehensively examines how the biological, clinical, and developmental profiles of children, with a special emphasis on females, youths, and adults with ASD change over time as compared to typically developing individuals by 2020. Estimated cost: $50,000,000 – $100,000,000 over 12 years.

Again, they are tracking the “biological” side of autism. Not a word of welcome from the vaccine-orgs.

The study above is one of the most critical that the Plan can call for, in my most humble opinion. How many times have we all asked or read others ask, “how will things look into the future?” Wouldn’t that really help answer questions about who “recovers”? Won’t Seriously, wouldn’t it be nice to understand how many people show large gains? Although lets face it, it happens even without “biomed”.

And, yes, I am very glad to see the extra emphasis on adults and females as well, by the way.

Question 3: What caused this to happen and how can it be prevented

This is the section where the vaccine initiatives were shoehorned in. Let’s take a look at what is still in.

Check out this big one:

Support ancillary studies within one or more large-scale, population-based surveillance and epidemiological studies, including U.S. populations, to collect nested, case-control data on environmental factors during preconception, and during prenatal and early postnatal development, as well as genetic data, that could be pooled (as needed), to analyze targets for potential gene/environment interactions by 2015. Estimated cost: $40,000,000 over 5 years.

Wow! $40M in gene/environment interactions. How much closer to the supposed agenda of the vaccine-orgs can one get? And yet, once again, the vaccine-orgs aren’t talking about it.

How about two more initiatives:

Determine the effect of at least five environmental factors on the risk for subtypes of ASD in the pre- and early postnatal period of development by 2015. Estimated cost: $10,000,000 over 5 years.

Conduct a multi-site study of the subsequent pregnancies of 1000 women with a child with ASD to assess the impact of environmental factors in a period most relevant to the progression of ASD by 2014. Estimated cost: $10,000,000 over 5 years.

Another $20M on environmental issues.

I think the point is made—just in this list there are something like $100M to $200M in funding for the biology of autism and environmental factors.

Why don’t the vaccine-orgs talk about these initiatives? One could speculate that it hurts their political maneuvering complaining about the removal of the vaccine initiatives. “Senator, they gave us $100M for exactly what we asked for, but we didn’t get everything”. Doesn’t sound so good, does it?

But, and this is important, these same vaccine orgs weren’t trumpeting the inclusion of all these biology and environment initiatives even before the vaccine initiatives were removed.

That’s why I keep referring to them as “vaccine-orgs”. It seems vaccines are the one and only issue they care about. Sure, they gave some lip-service to environment and biology. But now it’s as if these initiatives don’t exist and aren’t important. If you listen to their spiel: “Poor us, we asked for this small vaccine initiative, but all we got was genetics”.

Genetics? Yep, it is in the Plan. And rightly so, I will add. There is real evidence for genetic links to autism. If we are to understand autism, even environmental causes, we need to have the genetic information. Take this initiative, for example:

Identify genetic risk factors in at least 50% of people with ASD by 2014. Estimated cost: $30,000,000 over 6 years.

That’s a big project, and that’s what the vaccine-orgs would like everyone to think is the core of the Strategic Plan. But, as we’ve seen, it just isn’t fair to paint the Plan as emphasizing genetics while ignoring environment and biology.

There is a big push right now to stall the Strategic Plan (as though it hasn’t been delayed enough already by the constant attempts to rewrite the Plan by Lyn Redwood. If you think I am the only one who thinks this, listen to the last IACC meeting.) Yes, the same organizations who called for research into the environment and gene-environment interactions are willing to stall that research for one reason: vaccines.

Who thinks that TACA or Generation Rescue or any of the other small orgs would sit quietly by and see all this research stalled if it weren’t for the possibility of getting vaccines into the Plan?

Why should the rest of us sit quietly and let them stall progress towards a Strategic Plan that includes good research projects on topics like lifespan issues?

We shouldn’t.

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