Archive by Author

Number of cases before the vaccine court drop off dramatically

28 Oct

We often hear about how there are about 5000 cases before the vaccine court claiming autism as a vaccine injury. What we don’t hear is that almost all of those cases were filed years ago.

Take a look at the data on the number of cases filed per year. Or, take a look at this graph I made of the data (click to enlarge):

Cases submitted to the vaccine court by year

Cases submitted to the vaccine court by year

Red shows autism cases filed. Black shows non-autism cases.

Not much needed in the way of discussion. Autism cases peaked in 2003, six years ago. Autism cases are now at about the same level or less than non-autism cases. It has been low and flat since about 2006.

I know I’ve done a lot of vaccine-oriented posts lately. This is a good indication that I need to spend time on other subjects.

Environment of Harmful Ideas

27 Oct

There used to be an email group on Yahoo devoted to the ideas in David Kirby’s book, Evidence of Harm? It was called Evidence of Harm or EOH for short. The book was ostensibly an exercise in investigative journalism.

  • Had there been a dramatic increase in autism amongst children born in the 1990s?
  • Was this increase caused by the increasing burden of mercury resulting from more thimerosal containing vaccines being added to the vaccine schedule at the beginning of the decade?
  • Was the government involved in a cover up?

Supporters of the vaccine-autism hypothesis saw the book as vindicating their beliefs. Hence the EOH group. But Kirby had always been clear about one thing. If mercury was a significant cause of autism then its removal from childhood vaccines should cause the numbers of new cases to fall. When the mercury was removed and numbers continued to rise Kirby wriggled a bit and then invoked environmental toxins as the reason. As a result the yahoo group Evidence of Harm changed its name to Environment of Harm. So now it was environmental mercury and not the mercury in vaccines. Well not any more. All versions of the Vaccine OS are a bit like Microsoft Windows . They have to be backward compatible with previous versions and are consequently laden with bloatware and very unstable. If you read the group today there are very few autism specific posts and lots of general anti-vaccine comments. This has slowed down the usual messages of sympathy for the perpetrator. But one member of EOH still managed this comment

But yesterday someone posted a link to yet another story of an autistic teen allegedly murdered by his mother. It is too early to speculate on the outcome and at least one newspaper has closed its online comment section on legal grounds until the trial is over. This has slowed down the usual messages of sympathy for the perpetrator. But one member of EOH still managed this comment. [edit]

To the group sadly I beleive we will see a rash of cases where , where they put there child to sleep. The same phenomena occured in england over a two year period , that force the UK gouv to increase funding Before they wake up , I suspect we will see many cases

Pierre

So murder is now “putting to sleep.” And heck it works! When parents went on a killing spree in the UK the government increased its spending on autism. I live in the UK I remember a few isolated cases of murder of autistics, no more, but sadly no less than what is happening in the rest of the world. I do not remember it leading to a growth in funding. What we have in the UK is a National Autistic Society that is committed to improving the lives of autistic people and their families. It operates across the lifespan. It does not demonize autism or cry wolf over vaccines and epidemics. Its campaigns section has enabled autistic people to talk directly to lawmakers and the law is changing. More services are on the way. But at no point were the deaths of autistic children exploited for campaign purposes. EOH is well named. If it can foster the sort of twisted thinking and disregard for the facts displayed by Pierre it truly is an environment of harm.

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Blogs raise the alarm on autism conference

27 Oct

That’s the title of a post on Canada’s National Post website. Another article on the main site reads Controversial autism conference got funds from Sick Kids
.

The pieces are about the fact that Sick Kids, a highly respected children’s hospital, is hosting a Canadian version of the Autism One conference.

AutismNewsBeat attended and reported on a previous AutismOne conference, should you wish to see what happens at such conferences.

The Canadian version of the AutismOne conference appears to be much smaller than its American counterpart. Here is the list of speakers:

Jonathan Alderson, EdM
Evdokia Anagnostou, MD
John DeMarco, BCBA
Wendy Edwards, MD
Richard Frye, MD, PhD
Paul Hardy, MD
Martha Herbert, MD, PhD
Sonja Hintz, RN
Bryan Jepson, MD
Derrick MacFabe, MD
Valerie MacLean
Lindsay Moir
Manon Noiseux, MsC
Jon Pangborn, PhD
James Partington, PhD
Dan Rossignol, MD
Stephen Shore, EdD
Chantal Sicile-Kira
Lauren Underwood, PhD
Rudi Verspoor, HD(RHom), DMH
Sueson Vess, AutismOne Chef
William Walsh, PhD

Compare this to the last Chicago AutismOne conference speaker list:

Lisa Ackerman
Tim Adams, JD
James Adams, PhD
Alanna Apap, BCBA
Lynne Arnold
Tapan Audhya, PhD
Carmen Augustin, MSW, LCSW
Mary Lynch Barbera, RN, MSN, BCBA
Jeffrey Becker, OD
Marion Blank, PhD
Mark Blaxill, MBA
Kenneth Bock, MD
Tom Bohager
Mika Bradford
Kerry Brooks
Gregory Brown, MD
Jeff Cantor, DDS
Jane Casey
Ved Chauhan, PhD
Charles Chapple, DC
Lillian Chen-Byerley, MS, OTR/L, RCTC
Sylvia Chin-Caplan, JD
Rob Coben, PhD
Ken Cook
Laura Corby
Mark Corrales, MPP
Lee Cowden, MD
Mary Coyle
Mary Beth Cull
Dorinne Davis, MA, CCC-A, FAAA
Dennis Debbaudt
Vicky Debold, PhD, PN
Amy Derksen, ND
Richard Deth, PhD
Lisa Dietlin
Tami Duncan
Stephen Edelson, PhD
Mayer Eisenstein, MD, JD
Michael Elice, MD
Lark Eshleman, PhD
Seyyed Hossein Fatemi, MD, PhD
Barbara Fischkin
Barbara Loe Fisher
Richard Frye, MD, PhD
Carolyn Gammichia
Andrew Gammichia
Patricia L, Gannon, DDS
Mark Geier, MD, PhD
David Geier
Kristin Selby Gonzalez
Dana Gorman
Doreen Granpeesheh, PhD
Cindy Griffin, HD (Rhom), DSH-P, DIHom
Katherine Guttshall, MA, BCBA
Louise Habakus, HHP, AADP
Boyd Haley, PhD
Elaine Hall
Paul Hardy, MD
Martha Herbert, MD, PhD
John Hicks, MD
Betsy Hicks
Sonja Hintz, RN
David Holmes, EdD
Devin Houston, PhD
Diane Isaacs
Laurette Janak
Pam Johnson, DDS
Oliver Jones
Michelle Lancaster, DDS
Raun Kaufman
KP Khalsa, DN-C, RH
Cheryl Kilmer
Brian King, LCSW
David Kirby
Steven Kossor
Robert Krakow, JD
Arthur Krigsman, MD
Andrea Lalama
Mary Jo Lang, PhD
Lindyl Lanham, DSH-P, BS Spec Ed
Jeffrey Lewine, PhD
Carolyn Lewis
Allen Lewis, MD
Derrick MacFabe, MD
Cynthia Macluskie
Mark Macluskie
Jackie Marquette, PhD
Vicki Martin, RN
Julie Matthews, CNC
Jenny McCarthy
Woody McGinnis, MD
Mary Megson, MD
Joseph Mercola, DO
Claudia Miller, MD
Elizabeth Nickrenz
Mark Noble, PhD
Nancy O’Hara, MD
Melissa Olive, PhD, BCBA
Dan Olmsted
Valerie Paradiz, PhD
James Partington, PhD
Mitchel Perlman, PhD
Kathryne Pirtle
Jon Poling, MD, PhD
Sym Rankin, CRNA, APN
Kerri Rivera
Rick Rollens
Mary Romaniec
Dan Rossignol, MD
Jennifer Salcido, ND
Sarah Clifford Scheflen, MS, CCC-SLP
Harry Schneider, MD
Norm Schwartz, MD
Alice Shabecoff
Stephen Shore, EdD
Chantal Sicile-Kira
Terrie Silverman, MS
Allan Sosin, MD
Jane Sparks, RN
Pramila Srinivasan
Kim Stagliano
Cheryl Steinberg
Sandra Stewart
Carol Stott, PhD
Rev. Lisa Sykes
Catherine Tamaro
Theoharis Theoharides, MD, PhD
Polly Tommey
John Turner, DC, CCSP, DIBCN
Lauren Underwood, PhD
Anju Usman, MD
Sueson Vess
Aristo Vojdani, PhD
Andrew Wakefield, MB, BS, FRCS, FRCPath
David Warner
Vicki Warren, EE
Toby Watkinson, DC
Stacey Whetlow
Robert Weiner, PhD, CST-D
Amy Yasko, PhD

Yes, Canada will miss out on Jenny McCarthy and Andrew Wakefield, who was recently given “The first annual Andrew J. Wakefield Award for Courage in Medicine” by AutismOne, if that gives you an idea of AutismOne’s leanings. Does Sick Kids want to be hosting future “Andrew J. Wakefield Award for Courage in Medicine” award ceremonies? Do they want to have HBOT balloons smoking in their exhibit hall? Do they want to host future conferences with speakers from SafeMinds (Mark Blaxill), TACA (Lisa Akerman), the “National Vaccine Information Center” (Vicky Diebold and Barbara Loe Fisher), together with Mark and David Geier (bad armchair epidemiologists and, worse yet, purveyors of Lupron as a therapy for autism), Mayer Eisienstien, Joseph Mercola…?

I join Orac at Respectful Insolence in asking, what was Sick Kids thinking?

David Kirby: No friend to my autistic kid

27 Oct

David Kirby is certainly no friend to my autistic child.

I don’t know why I let David Kirby annoy me. It is a pretty safe bet that whenever he blogs he will write something that rubs me the wrong way. Whether it is his clear lack of science acumen or his faux fence sitting “I’m just trying to spark a national debate” ruse, he never fails to write something offensive.

Recently he responded to the very strong possibility that the number of autistic adults is much higher than previously thought with what amounts to essentially, “Autistic adults? Nope, I’ve never seen ’em. They must not exist”.

The right answer in my view would be, “We need to confirm this right now and find out who may be getting no support or the wrong support.” That’s what a friend to my kid would say. By denying the existence of autistic adults Mr. Kirby has shown himself to be about as far from a friend as I could imagine.

In his recent interview with Sharyl Attkisson Mr. Kirby noted that he didn’t see any autistics on the subway or in his neighborhood, therefore there can’t be 1 in 100 autistic adults. Therefore, according to his logic, there is an autism epidemic. Of course he says this is to support the idea that we need to take the vaccine issue seriously.

It was nonsense when he first said it and I pointed it out. I thought that having embarrassed himself on national TV, Mr. Kirby would quietly drop the idea that somehow “I know ’em when I see ’em” is either valid or respectful. I’ve watched Mr. Kirby for too long to even hope that he would apologize or do a real retraction without real pressure but I will say I was surprised to see him write a blog post basically defending his autistic-radar.

In a recent blog post Mr. Kirby has expanded his scope of not-finding autistics. It isn’t just his recent subway ride that was devoid of adult autistics, it is his entire life:

I have lived in many different cities, worked at nine different jobs, and met thousands of men and women throughout my years. I cannot recall people who showed the characteristics of high-functioning autism, though I must have met some along the way, at least in passing. But there were not 1-in-60 boys with ASD in my schools and there are not 1-in-60 men with ASD in my area. I think I would have noticed them by now.

Repeated for emphasis:

I cannot recall people who showed the characteristics of high-functioning autism

In an entire lifetime, no one who might be high-functioning autistic?

David Kirby has been around the autism community for a while now. Somehow I think he must have seen some adult with high functioning autism. Are we to believe that no autistic adults attend the DAN conferences, the Autism One conferences, or the myriad other alternative medicine conferences that hold David Kirby as a hero? Are we to believe that no autistic adult parents of autistic children attend these conferences?

One specific question that popped into my mind: Has Mr. Kirby never been to a conference with Teresa Binstock? Ms. Binstock is one of the authors of Autism: a novel form of mercury poisoning (a faux-journal paper in Medical Hypotheses). Ms. Binstock is also reported to be an autistic adult (Asperger syndrome). Mr. Kirby has never met her? Possible, but unlikely.

According to his interview Mr. Kirby’s criteria for Asperger syndrome are:

“restrictive, repetitive and stereotypical patterns”

“interests and behaviors that are abnormal”

“Repetive motor mannerisms such as hand or finger flapping”

“Significant impairment in social, occupational and other important fuctions”

I guess as Mr. Kirby was passing people on the subway platform he had some test of social functions? He can tell what your interests are (and somehow label them abnormal) just by looking at you?

For Mr. Kirby’s edification, here are the DSM-IV criteria:

(I) Qualitative impairment in social interaction, as manifested by at least two of the following:
(A) marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
(B) failure to develop peer relationships appropriate to developmental level
(C) a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people)
(D) lack of social or emotional reciprocity

(II) Restricted repetitive & stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:

(A) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(B) apparently inflexible adherence to specific, nonfunctional routines or rituals
(C) stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)
(D) persistent preoccupation with parts of objects

(III) The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning.

(IV) There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years)

(V) There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood.

(VI) Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.”

Here’s another hint: if diagnosing ASD’s was as simple as a checklist there wouldn’t be tests like the ADOS.

Mr. Kirby continues the old ruse that autistics are so obvious that one couldn’t possibly miss them, even in passing. Contrary to Mr. Kirby’s assertion, it is possible that he could have missed some autsitics in his subway travels. When the autism rate for children in Cambridgeshire was recently reported, the researchers noted that a large fraction (1/5 to 1/3) of autistic students were undiagnosed. Yes, even educational professionals who spend every day with a kid can miss the fact that the child has an ASD.

In his blog post Mr. Kirby bolsters his argument with a quote from Anne Dachel, probably best known to readers here as an blogger at the Age of Autism. Ms. Dachel states:

“an insult to thousands of teachers and counselors and doctors – who apparently ‘stupidly’ ignored these kids in the past. If they were always here, but we just called them something else, then what did we do with them?”

I am always saddened when an educator like Ms. Dachel confuses intelligence with knowledge. Intelligence (smart/stupid) is not the same thing as knowledge (or ignorance). When previous generations didn’t diagnose a child with an ASD there were many reasons. One big reason–the diagnostic criteria were different then. That is and example of ignorance. I feel silly pointing this out to an educator, but in 1980 they didn’t know (in fact couldn’t know) that the diagnostic criteria would be different in 2000. How many times have we heard, “autism wasn’t covered in medical school back then”? This is used to “show” that autism was rare then. Well, if they didn’t get the training, they were very likely ignorant of the differences between autism and other disabilities. They were certainly unlikely to know the diagnositic criteria for Asperger syndrome, since it didn’t exist at the time.

To answer Ms. Dachel’s question, “what did we do with them”: many autistics services were served under the label of mental retardation. This isn’t even speculation. In a recent study King and Bearman showed that a large number of autistics in California were diagnosed as having mental retardation before 1987. As the criteria changed and awareness grew, these individuals (both children and adults) were also given autism diagnoses. They checked the actual records of actual people and documented it.

To further answer Ms. Dachel’s question, “what did we do with them”: many of “them” were unserved–just like today. Remember that study in Cambridgeshire we just mentioned?

Back to David Kirby’s blog post: he shows us that he is truly “concerned”:

In my opinion, to shrug and treat this story as if things have probably always been this way is, frankly, wishful thinking and unsettling.

It is Mr. Kirby’s response that is unsettling. Heck, it is beyond unsettling. Way beyond.

I think his response the NHS report (that there are 1 in 100 autistic adults) by claiming that since he can’t see “them”, “they” don’t exist is beyond wishful thinking and unsettling. Mr. Kirby acts as though the study doesn’t exist. Worse, he acts as though it shouldn’t exist.

I usually try to avoid speculating on motivations. But, I can’t help myself with these latest comments by Mr. Kirby. Why did he feel the need to downplay the existence of adult autistics in high numbers? The report that there is a high number of unidentified autistic adults is a direct threat the the idea that vaccines caused an epidemic of autism. How does that play to someone who has made a career out of “Evidence of Harm. Mercury in Vaccines and the Autism Epidemic: A Medical Controversy”.

Consider, if you will, what happened when people like Mr. Kirby pushed the idea of an epidemic of vaccine-induced autism. When the ideas came forward that the MMR vaccine or the vaccine preservative thimerosal could be causing autism, the scientific community took it seriously and responded with multiple studies looking for better evidence. But now that there is evidence of a large contingent of adult autistics, Mr. Kirby joins the denialists and defends the old-guard thinking. Ironic, that.

It has always been a reasonable assumption that there is a large contingent of unidentified autistic adults. The active denial of this possibility has long bothered me. The denial in response to the UK survey of autistic adults is just beyond the pale.

Mr. Kirby is just no friend to my kid. My kid needs advocates who will fight to make a better world for autistics. How can we do that if we deny their existence? How can we prepare for the kids of today to become adults if we don’t start supporting autistic adults now?

Are blood mercury levels an important metric in autism?

26 Oct

A recent study shows that autistic children do not have more mercury in their blood than typical children. When it came out I didn’t have time to discuss it. I have some time now, and other people have blogged it, so I decided it was time to address some thoughts here.

The study, from the U.C. Davis MIND Institute: Blood Mercury Concentrations in CHARGE Study Children with and without Autism concluded:

After accounting for dietary and other differences in Hg exposures, total Hg in blood was neither elevated nor reduced in CHARGE Study preschoolers with AU/ASD as compared with unaffected controls, and resembled those of nationally representative samples.

This paper and its conclusion were sure to be criticized by the alternative-medical autism community. Why? because the autism communities are still battling the idea that autism is a “novel” form of mercury poisoning. Anything, no matter how small, that challenges that idea will be (and is) challenged.

The idea that autism and mercury poisoning are similar was put forth in a paper in the pseudo journal Medical Hypotheses. The paper, Autism: a novel form of mercury poisoning, by SafeMinds founders Bernard S, Enayati A, Redwood L, Roger H, Binstock T., purported to show similarities in autism and mercury poisoning.

The abstract of the SafeMinds paper states:

Autism is a syndrome characterized by impairments in social relatedness and communication, repetitive behaviors, abnormal movements, and sensory dysfunction. Recent epidemiological studies suggest that autism may affect 1 in 150 US children. Exposure to mercury can cause immune, sensory, neurological, motor, and behavioral dysfunctions similar to traits defining or associated with autism, and the similarities extend to neuroanatomy, neurotransmitters, and biochemistry. Thimerosal, a preservative added to many vaccines, has become a major source of mercury in children who, within their first two years, may have received a quantity of mercury that exceeds safety guidelines. A review of medical literature and US government data suggests that: (i) many cases of idiopathic autism are induced by early mercury exposure from thimerosal; (ii) this type of autism represents an unrecognized mercurial syndrome; and (iii) genetic and non-genetic factors establish a predisposition whereby thimerosal’s adverse effects occur only in some children.

The paper is discussed on the SafeMinds website as a “cornerstone document”:

In April of 2000, SafeMinds founders put forth the first definitive work reviewing the link between mercury and Autism Spectrum Disorders. This effort showed that the autism presentation mirrored mercury toxicity. This research was key to propelling the issue into the awareness of the public and government officials. The resulting report, “Autism: A Novel Form of Mercury Poisoning” (Bernard, Enayati, Redwood, Roger, Binstock) was and remains recognized as a cornerstone document to the discourse on medical mercury exposure and toxicity and its effects on health.

They still hold to this idea, even though the it has been thoroughly rejected by actual specialists in mercury toxicity. Heck, it’s been rejected by non-specialists. Autism and mercury poisoning are just not the same thing.

If you spend any time with the online autism community you already know the mercury hypothesis is still alive and well. Chelation, a drug therapy to remove some of the body’s mercury burden, is still applied to autistics by alternative medical practitioners. Join one of many autism discussion groups and the idea is bound to come up.

Given that, it may seem counterintuitive that the evidence for the mercury hypothesis is so weak that any study that purports to support it is quickly cheered by the alternative medical community.

Such was the case when, in 2007, two researchers looked at what was then an already existing dataset of blood mercury levels in autistic children and declared that contrary to the previous reports, autistic kids do have high levels of blood mercury. The reanalysis paper, Blood Levels of Mercury Are Related to Diagnosis of Autism: A Reanalysis of an Important Data Set, was itself immediately reanalyzed (epiwonk, epiwonk-2, Autism Street, leading to a response analysis by the Age of Autism blog, to name a few).

The quick and multiple responses to the DeSoto paper serve show how important the idea of autism as mercury poisoning is in some circles.

Shortly after the DeSoto paper came out, Mark Blaxill of SafeMinds (a very vocal proponent of the mercury hypothesis) wrote at the Age of Autism blog:

This is an important and unexpected finding. It supports one of the central hypotheses at the heart of the autism-mercury controversy and suggests that the excretion deficit in autistic children might persist longer than anyone had guessed

Mr. Blaxill has also used the DeSoto paper in his congressional briefing to support the idea that “Autistic children metabolize mercury differently”. Beyond the question of whether DeSoto is an accurate analysis of the data, this assertion by Mr. Blaxill is clearly not what the DeSoto paper showed.

That said, Mr. Blaxill’s remarks show how the DeSoto paper was obviously a major milestone in the attempt to legitimize the mercury hypothesis.

This struck me as odd at the time, as the prevailing wisdom was (and remained) that blood levels of mercury were not a good metric. Check any autism-biomed discussion and you will find loads of discussions about all sorts of odd tests for mercury: chelation challenge tests, urinary porphyrin tests, hair tests…pretty much everything except blood tests. The reason is simple, and sad. Autistic kids aren’t suffering from mercury poisoning, and blood tests show it.

The recent MIND Institute paper clearly refutes the DeSoto analysis paper. The MIND study is larger and uses a cohort of kids of similar ages (DeSoto uses a broad age range) and, very importantly, the MIND study controls for mercury exposure from diet and other sources. These are factors missing in the data analyzed by DeSoto. This puts the alternative medical autism community into a bit of a quandary. The MIND Institute and the lead author (Dr. Hertz-Picciotto) are well respected in those quarters as they generally support the idea of a real rise in autism incidence and the idea that vaccine-causation should be researched. And, yet, the MIND study would speak against autism as mercury poisoning.

One thing about waiting to do a longer blog post is that I can see what others have said. For example, the comments over at the Age of Autism blog were predictable in suggesting that blood levels are not an accurate metric. Here are a cpouple of examples:

This study on children’s BLOOD mercury levels does not take into account the fact that the mercury (and aluminum) is stored in tissues and organs including especially the BRAIN. The body protects itself from heavy metals by encapsulating this in fat cells especially, and in an infant or child, the largest concentration of fat is in the brain. The vast majority of the mercury (and/or aluminum) is NOT IN THE BLOOD.

and

Blood levels are always inaccurate. Best to get urine after chelation, then you see the difference. Even kids with autism, after many rounds still don’t dump the stuff. And by the way, selenium soils is a key thing Maria…because the lowest selenium soil states have the highest autism. And visa versa. Lest we forget, many other metals also cause problems…did they look at those or bother?

And let’s get this straight…mercury not only causes autism, it causes behavioral problems, immune problems, metabolic problems….just looking at one aspect of the outcome is not a study.

Another desperate attempt to downplay mercury, not going to work guys…

I bring this up because similar observations were not made when the DeSoto paper was being discussed. Yes, even though the prevailing wisdom is that blood levels of mercury are not the “correct” metric, none of the people at blogs like the Age of Autism spoke up.

Back to the present, I note also the SafeMinds response to the MIND Institute study, which includes this line:

Research has demonstrated that certain subgroups, including children with autism, show potentially higher susceptibility to environmental stressors like mercury (James, 2009; Ralston, 2008; Sajdel-Sulkowska, 2009). Some recent studies have indicated increased mercury in tissues and organs of people with autism relative to controls (Adams, 2007; Sajdel-Sulkowska, 2009; Desoto, 2007; Desoto, 2008). Given equivalent exposures, as indicated by the CHARGE study, SafeMinds feels that it is imperative that research is conducted that determines not only exposure, but differences in how individuals with autism handle mercury exposures and its impact to the body’s tissues and organ systems.

Yes, that is the same DeSoto paper they are citing. I am a bit of a loss as to what SafeMinds is trying to say. They cite DeSoto, an analysis of a study which did not control for exposure and because of this is a paper which to this observer is clearly refuted by the MIND Institute study. Without controling for exposure, DeSoto can’t be claimed to show increased mercury in tissues.

Sound confusing? That’s because it is. Mercury in the blood is important to the biomed community. At least it is if it is a paper (like DeSoto) that supports the idea that mercury causes autism. Mercury in the blood is not important if the paper (like the one from the MIND Institute) doesn’t support the link. The DeSoto paper is important because it supports the hypothesis, even when SafeMinds are using the MIND study which refutes DeSoto…

Yes, all this is confusing. There isn’t a consistent view on whether blood levels are important, except to say that data which supports the mercury hypothesis is good, data which doesn’t is bad.

If this is so confusing, what can we say? We can say that no, mercury in the blood is not a good metric for anything having to do with autism. Not because blood levels aren’t a good measure, but because autism is not a novel form of mercury poisoning.

Paul Offit honored by American Academy of Pediatrics

24 Oct

Paul Offit has been honored by the American Academy of Pediatrics for Outstanding Service.

Here is the press release:

WASHINGTON, DC – The American Academy of Pediatrics (AAP) will present Paul Offit, MD, FAAP, with the President’s Certificate for Outstanding Service at the National Conference and Exhibition of the AAP. The award recognizes an individual’s outstanding service and long-term, personal dedication to the mission of the AAP and to the health, safety and well-being of children. Dr. Offit is a pediatrician, chief of infectious diseases and the director of the vaccine education center at the Children’s Hospital of Philadelphia. The AAP is honoring Dr. Offit in recognition of his ongoing commitment to promote immunization.

Dr. Offit is a co-inventor of a vaccine against rotavirus. He is also the author of the book, Autism’s False Prophets.

Hat tip to “I Speak of Dreams“

The war on Tom Insel and the IACC

23 Oct

Tom Insel is director of the National Institute of Mental Health (NIMH) but he is better known to readers of this blog as the chair of the Interagency Autism Coordinating Committee. If you read other autism blogs, he’s probably very well known to you, as he has been the target of a concerted attack from the vaccines-cause-autism groups for a few months now. They even got the publicist, David Kirby, to take their battle to the public in a CBS interview.

Let me take a moment to make a side point. The vaccines-cause-autism groups (SafeMinds, Generation Rescue, the National Autism Association, Talk About Curing Autism (TACA)…I’m probably missing one or two), are basically a single consortium as evidenced by their single blog and their shared membership. I don’t see the need to treat them as separate entities. I really don’t see that they should be given multiple representations on the IACC.

I’ve been watching the IACC pretty closely for some time. I’ve also been watching the vaccines-cause-autism consortium. I’ve been watching the consortium build pressure against Dr. Insel.

One thing I’ve noticed: this level of pressure directed at Dr. Insel wasn’t always the case. Less than a year ago, Dr. Insel was not their target.

Take a look at one of the classic pieces of IACC intimidation: a piece called “Grinkers Stinker“. This is dated January, 2008. It was timed to coincide with a 4-day workshop that was the kick-off for the Strategic Plan process.

“Grinker’s Stinker” was a piece about the Dr. Joyce Chung, the former IACC coordinator. She is the wife of Prof. Roy Richard Grinker, anthropologist and author of the book Unstrange Minds. Dr. Grinker has publicly stated that he accepts the scientific consensus that vaccines did not cause an epidemic of autism. Dr. Chung has made no public statements (at least that I can find), but the lack of actual information about her or her opinions didn’t stop a blog post decrying her position on the IACC. From the blog post:

Does Joyce Chung agree with her husband? Did they ask her this question before she took the job?

Oddly, the last comment to that blog piece, by Generation Rescue’s “DC Liason” Kelli Ann Davis, starts with the question, “Can I suggest that we try and put an end to all the mudslinging?”

History has proven that, no, the Age of Autism can’t put an end to the mudslinging. Unfortunate, that.

Take a look at the blog post. There is no mention of Dr. Insel. No one decrying his “lack of leadership”, no one claiming “collusion” or “malfeasance”. None of the mudslinging terms currently used against members of the IACC, especially Dr. Insel. In fact, the first mention of Dr. Insel is in the comment by Ms. Davis. In her comment Ms. Davis suggests that Dr. Insel will be watching out for conflicts of interest.

Times certainly have changed. The Age of Autism likes to demonize those it disagrees with, and Dr. Insel certainly has been a recent target.

What happened?

Dr. Insel (a) had the IACC reconsider an initiative to call for a vaccine-autism study to be included in the Strategic Plan and (b) spoke before a congressional hearing about why vaccine/autism studies are not a high priority.

Not surprising to many of the readers here, I am sure, the vaccines-cause-autism consortium have a single issue (vaccines). As long as Dr. Insel’s position on vaccine/autism research, there was hope for the consortium and they left him alone. Once his current opinion formed and was public, he was public enemy number one. Yes, Dr. Paul Offit (vaccinologist and outspoken critic of the notion that vaccines cause autism) has been superseded.

Recently, Dan Olmsted (owner of the Age of Autism website) called for Dr. Insel to resign. Again, it boils down to the single issue: vaccines.

So, here we are. The vaccines-cause-autism consortium has declared war on Tom Insel for opposing their single-item agenda. If you think “war” is too strong a word, take it up with Mr. Olmsted. In referring to the recent incident where notes from an IACC member were made public:

…notes dropped on the floor (see the notes here) at the IACC, recovered by friendly forces and reported on our blog…

Yes, the Age of Autism people are “friendly forces”.

Here’s my perspective on Dr. Insel, for whatever it may be worth. He is the chair of the IACC. In my opinion, his role is to run the meetings and manage the staff. He should be getting good people in to serve on the IACC and the subcommittees and good people to consult on the topics that are discussed. Basically, his role is that of a facilitator–get good people together with the tools they need to do their job. He needs to be knowledgeable enough on the subject (autism) to do this.

You know what? Given the fact that his full time job is director of the NIMH, he’s actually done a pretty good job.

Is there room for improvement? Heck yeah. How about putting a greater emphasis on research into the needs of autistic adults? The majority of autistics are adults. And yet only 5% of the funding is being applied to this critical area.

But, of course, the squeaky wheels (the vaccines-cause-autism consortium in this case) get the grease. The squeaky wheels have been calling for research into environmental causes of autism. Tens of millions of dollars are being focused on this. Why are the squeaky wheels unhappy? Because the squeaky wheels didn’t really mean “environmental causes”. That was only a code word for vaccines.

This level of tension is not just sad. It is detrimental to the progress of the IACC. There are a lot of autistics, parents, professionals and organizations who are interested in working with the IACC. Why spend any more effort on the groups that have declared war?

(note, I made a number of changes in this piece shortly after publishing it)

Gentle autistic man murdered

22 Oct

If someone says, “there’s a murder in the news and an autistic is involved”, what is the image that comes to mind for most people?

This story from the Sacramento (California) Bee: Slain student was “gentle, sometimes a target,” dad says..

There are some autistics who are non aggressive to the point of being unable to defend themselves. It sounds like Scott Gregory Hawkins might fall into that category. He was beaten to death with a baseball bat by his roommate.

“I would say that he was just very gentle, sweet, unassuming, kind of sometimes a little goofy, and he was kind of a nerdy kid who really loved his studies,” his father said.

Scott loved history and wanted to be an educator.

Landmark autism law passed today

22 Oct

The Autism Bill passed its final stage in the House of Lords today to become England’s first ever disability-specific law. The National Autistic Society (NAS) heralded the new law as ‘groundbreaking’ and said health and social care services could now face legal action if they failed to provide support for people with the condition, which affects over half a million people in the UK. The Autism Bill started out as a Private Members’ Bill drafted by the NAS on behalf of a coalition of autism charities and was championed through Parliament by Conservative MP Cheryl Gillan. It has had support from all parties.

Mark Lever, chief executive of the NAS, said:

“Thousands of adults with autism told us they were experiencing serious mental health difficulties due to a lack of support. After a year of lobbying, this is the watershed moment they have been waiting for – this law could literally transform lives. It will add serious weight to the forthcoming adult autism strategy so now we’ll be keeping the pressure up on Government to make sure they get it right and deliver lasting change for people with this serious, lifelong and disabling condition.”

“I’d like to thank everyone for their support. It is extremely rare that a Private Members’ Bill goes on to become law, so this is a triumph for people with autism and their families. It’s a real testament to the overwhelming level of parliamentary support for this chronically excluded group. I hope it will make the crucial difference in their lives that people with autism need and deserve. We’d like to thank Cheryl Gillan MP and the thousands of autism campaigners, MPs and peers for their support – together we have made legal history.”

Once it receives Royal Assent the Bill will officially become the Autism Act. Under the new law the Government’s forthcoming adult autism strategy will be legally enforceable and must be published within the next six months. New responsibilities the NHS and local authorities will be expected to fulfil will include providing diagnostic services for adults with autism and better training for health and social care staff.

The NAS is also calling for the strategy to tackle the woeful number of people with autism in employment. New research for the charity’s Don’t Write Me Off campaign, launched last week, found that a third of people with autism – that’s over 100,000 – currently live without a job and worryingly without benefits.

The Autism Act was backed by

  • The National Autistic Society,
  • Wirral Autistic Society,
  • Autism Research Centre,
  • TreeHouse,
  • Hampshire Autistic Society,
  • Staffordshire Adults Autistic Society,
  • Research Autism,
  • Autism Anglia,
  • The Wessex Autistic Society,
  • Autism Education Trust,
  • Autism Speaks,
  • Autism West Midlands,
  • Autism in Mind,
  • Autism Initiatives,
  • Sussex Autistic Community Trust
  • Tyne and Wear Autistic Society.

I hope everyone will join with me in congratulating the NAS and their partner organizations and all their supporters who have campaigned and lobbied to make this possible.

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It’s time to stop the intimidation tactics towards the IACC

21 Oct

The Interagency Autism Coordinating Committee (IACC) is group of government employees and autism community stakeholders who are chartered with coordinating research activities within the U.S. government’s Department of Health and Human Services (HHS).

The official charter is:

The Interagency Autism Coordinating Committee (Committee) shall coordinate all efforts within the Department of Health and Human Services concerning autism spectrum disorder to combat autism through research, screening, intervention and education. The Committee’s primary mission is to facilitate the efficient and effective exchange of information on autism activities among the member agencies, and to coordinate autism-related programs and initiatives. The Committee will serve as a forum and assist in increasing public understanding of the member agencies’ activities, programs, policies, and research, and in bringing important matters of interest forward for discussion.

The IACC predates the Combating Autism Act (CAA), but has taken on the role of coodination and strategic planning for the CAA.

This is no small effort. We are talking about a group that helps to set the goals for about $100M in research funding a year. The U.S. government’s research efforts into autism are the largest in the world. The research portfolio covers causation through supports for autistic adults.

I don’t think I will surprise anyone when I say that the autism communities, like any communities, have many different ideas of what focus should be placed on autism research. I would also expect little argument that the loudest voice in that discussion comes from the groups promoting the notion that vaccines caused an autism epidemic. Most of these groups are sponsors of the Age of Autism blog.

These groups lobbied hard to get vaccine research included in the Combating Autism Act. The failed. They did manage to get some senators to mention vaccines in the “colloquy“. These were statements made by senators when the Act was passed. Basically, these are speeches, not law. These statements were also not very strong. Consider this statement by Senator Enzi:

However, I want to be clear that, for the purposes of biomedical research, no research avenue should be eliminated, including biomedical research examining potential links between vaccines, vaccine components, and autism spectrum disorder. Thus, I hope that the National Institutes of Health will consider broad research avenues into this critical area, within the Autism Centers of Excellence as well as the Centers of Excellence for Environmental Health and Autism. No stone should remain unturned in trying to learn more about this baffling disorder, especially given how little we know.

The strongest argument that can be made is that three senators made a nonbinding statement that the National Institutes of Health should “consider” research on vaccines.

The Combating Autism Act was signed over three years ago. Since that time it has become even more clear that vaccines are not a primary cause of autism. The two major theories that the MMR vaccine or that Thimerosal cause autism have been shown to have very little scientific basis. Both were discussed at length in the Autism Omnibus Proceedings. The MMR causation theory has already been rejected as “not even close” and upheld by three separate appellate judges. The thimerosal theory has not been decided as yet, but the science was no better than that used for MMR. I expect that the Thimerosal theory will suffer the same fate as the MMR theory.

The number of people applying to the “vaccine court” for compensation for autism peaked six years ago. 2,437 families petitioned the Court for hearings alleging autism as a vaccine injury in 2003. In 2008 that number shrank to 253. The vaccines-cause-autism theory is clearly losing ground even within the autism community.

That doesn’t mean that the vaccines-cause-autism organizations are giving up. Quite the opposite. They are ratcheting up the pressure, focusing on individuals.

I actually find it hard to consider the vaccine/autism groups to be separate entities. These groups are SafeMinds, Talk About Curing Autism (TACA), the Autism Research Institute (ARI), Generation Rescue, and The National Autism Association (NAA). They do vary in their approaches to some topics. For example, TACA and Generation Rescue put more resources into direct contact with families than, say, SafeMinds. But, when it comes to lobbying about vaccines, they are pretty much a single organization, sharing a significant amount of key personnel.

These organizations are represented on the IACC by Lyn Redwood of SafeMinds. The grassroots activist efforts of the organizations is coordinated through their blog, the Age of Autism. It is a particularly clever and effective construct: the advocacy organizations can claim to be separate from the particularly nasty rhetoric of their own blog. As a separate entity, the finances of the Age of Autism blog will not be made public.

That all said, the Age of Autism should be considered the voice of these organizations and the actions coordinated on that blog are the actions of its parent organizations.

I can understand why groups such as SafeMinds or Generation Rescue would want to be able to claim some distance from the Age of Autism (AoA). AoA is used to coordinate serious intimidation efforts.

The recent departure of Dr. Story Landis from the IACC was engineered by AoA. They found notes made during an IACC meeting and planned a surprise attack to coincide with an IACC meeting. As an ironic twist, AoA got someone sympathetic to their cause to resign the IACC.

AoA has also targeted IACC member Yvette M. Janvier, M.D., twisting her words “the idea that autistic kids are sick offends me!” into “I am offended by sick autistic kids”.

AoA launched an attack on IACC coordinator Joyce Chung. This coincided with a week long IACC meeting to iron out the Strategic Plan. Her “crime”? She is married to Richard Grinker, author of Unstrange Minds. Dr. Grinker is public in his belief that there has not been an epidemic of vaccine-induced autism, a belief held by the vast majority of the autism research community. What does Dr. Chung have to say publicly on the subject? Nothing as far as I can see. What actions did she take that warranted an attack? None.

The good people at AoA have attempted legal intimidation as well. They got a Congressional Oversight Committee to investigate the IACC. When that didn’t pan out, they sought “legal advice” on alleged FACA violations. No word on what, if anything, became of that effort either. The Age of Autism isn’t shy about touting their attacks. It would seem safe to assume this one failed.

AoA has recently set their sights on the IACC’s chair, Dr. Tom Insel. I am sure this came as no surprise to Dr. Insel. Earlier this year he called for a re-vote on a proposal to add a vaccine study to the IACC’s Strategic Plan, and later made public statements in a congressional hearing that there wasn’t enough data to warrant a vaccine-autism study.

Other than being bold enough to discuss the view held by the vast majority of autism researchers, what is Dr. Insel’s greatest crime? His brother invented a vaccine. Yes, Dr. Richard Insel helped develop a vaccine for Haemophilus influenza B (Hib). This vaccine has been quite effective in reducing Hib infections. But, any contact with vaccine research or company is considered a fatal conflict of interest to the bloggers at the Age of Autism.

I’m sure that there is more going on behind the scenes.

If this were all to the story, it would be sad but uninteresting. Unfortunately, there is fallout from all of this intimidation. I already know that good researchers have avoided autism as a subject in order to avoid the groups represented by the Age of Autism. I suspect that good people are avoiding participating in the IACC meetings as well. But, the most direct fallout is that the IACC members are unable to speak their minds on the subject of vaccines. Beyond vaccines, they have to live in fear of any possible infraction of the rules or any statement that could be misinterpreted will be used against them. A prime example was given above where “the idea that autistic kids are sick offends me!” was warped into “I am offended by sick autistic kids”.

If this were some minor, make-work bureaucratic committee with no real impact I wouldn’t care. But this is the group that sets the plan for the largest autism research in the world. Not only is this sort of intimidation a crime in general, it is hurting my kid’s chances at a better life.

It is time for the intimidation to stop. The Age of Autism bloggers should learn a lesson from their recent, childish attack. Acting out without thinking can hurt even them. This event is being noticed. Both the journals Nature and Science have blog posts about this recent debacle. The Simons Foundation interviewed the director of the NIH on the subject.

I’ll say it again: it is time for the intimidation to stop.

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