AGE OF AUTISM

Beware of Autisms

By Mark Blaxill

(reprinted with permission from The Autism File)

There’s a new fad in some quarters of the autism world. Frustrated by their lack of progress in pinning down the biology of autism, many scientists have begun planning a retreat, a way to avoid owning up to their failures and to keep doing what they want to do in autism research despite the fact that little of it has been working. Some have been trying out an innovative branding concept. Instead of using the familiar label “autism”, they’re proposing to change the name and the message by adding a single letter, an s at the end of the word. Changing the name of the disorder we know as autism to “autisms” may seem like a small matter. It may even seem intriguing and attractive: a way to recognize the diversity and individuality of our children. But beware of scientists bearing semantic shifts. There is more to autisms than one additional s.

The autisms idea is coming from the highest levels of the research establishment. The man currently in charge of developing a strategic plan for autism research at the National Institutes of Health, Thomas Insel, had this to say in a press conference convened by the CDC on March 6, 2008 on “vaccines and autism.” “We tend to think about this, actually as a group of disorders”, Insel offered tentatively. “Sometimes we talk about autisms rather than autism per se.”

For the autism parent community, there’s a certain appeal in this seemingly modest comment. After all, parents know more than anyone that while children with autism share common behavioral features; they also differ enormously from one another in ways that might be medically important. “Co-morbid” conditions like diarrhea, seizures, and sleep disorders are more common in autistic children, but they are not universally shared in the same way the core symptoms are. So why wouldn’t it make sense to acknowledge, indeed even celebrate, the diversity of the condition rather than adhering to rigid and monolithic nomenclature?

The answer is that there’s a trap in autisms.

Mark Blaxill at Autism One

Mark speaking live at A1 on Bettelheim and "homicidal mothers." Bernie Rimland dispelled the myth of the homocidal mother. Bettelheim committed suicide. Fascinating pres on speaking out on behalf of our kids where so many have failed them.

(It's not easy to live blog a speaker!) KS

Not yet...

Latest Autism Gene Studies Find….Not Very Much

By Mark Blaxill

There’s a familiar rhythm to the most prominent autism gene hunt publications. Their authors hype their newly minted study aggressively in the media. The prestigious journals that publish them lend their imprimatur to press releases that say, “this study is a big deal.” The findings sound impressive in the press release (and the authors get plenty of time on camera and in leading newspapers to tell us how truly impressive they are).  In the meantime--in papers that are so densely written that making sense of what they really say requires far more reflection than the media hype cycle permits--skillfully concealed evidence reveals the truly important news in the findings: the authors whisper quietly (if at all) that the new analysis negates the most important findings of some of the most prominent previous gene hunts, while crucial detail on their new findings is often relegated to “supplementary material” that’s not available on the publication date.

All of these patterns will almost certainly be on display today as the latest missive from the autism-genetics establishment bursts forth in the form of not just one, but two major papers in the journal Nature. But I warn you, don’t be fooled by the hype. These two studies report a few moderately interesting findings, which isn’t a bad thing. Broadly speaking, trustworthy and actionable biological findings about autism are something all autism parents should welcome, whether they’re about genes or the environment or the interaction between the two. And indeed, most autism parents I know generally agree that there OUGHT to be some kind of genetic susceptibility that we can discover in autism. 

But what’s truly remarkable in these two papers is how so much will be made about so very little.
--
That said, the publication of these two papers--one on the risk of rare mutations (copy number variants) in “autism genes”, the other on common inherited genes (reported here in the form of “single nucleotide polymorphisms” or SNPs) that may increase autism risk--creates an opportunity to review the current state of the great autism gene hunt, something I’ve wanted to do for a while. I’ll break the review into four pieces

1. What you should know about the lead authors and their funding
2. What the paper on “copy number variants” really says
3. Why the paper on common genetic variations will get the most hype
4. How to distinguish faith from reality in reading the results

When Our Government is Out of Control

By Mark Blaxill

We are witnessing an extraordinary set of revelations about the behavior of the Federal Government of the United States during the Bush Administration. Administration officials at the highest level made policies that permitted torture, employees of federal agencies carried out torture, and the unitary executive branch concealed evidence of torture in an effort to paint its activities in the most favorable light.

We’ve heard all the excuses. It wasn’t really torture; it was a set of “advanced interrogation techniques.” We didn’t kill anyone. We got valuable information that prevented terrorist attacks (this point was disputed by the head of the FBI). It all depends on what the definition of the word “torture” is.

Pretty appalling stuff. As the light is shining on what really happened behind the scenes, many Americans are outraged at what we’re learning. One of the top three stories on the Huffington Post this week (with Jim Carrey’s post, “The Verdict on Vaccines is In???” only two slots behind) was on Fox News anchor Shepherd Smith’s passionate outburst, in which Smith declared, “We are America. We don’t f---ing torture!” Watching Smith’s emotional appeal, I found myself asking a different question.

What was different about the Bush administration’s behavior in dealing with the autism epidemic?

New (And Improved?) IOM Panel to Convene on Vaccines

Editor’s note: The IOM is at it again. Julie Obradovic raises some important questions below about the role and accountability of one IOM staffer who has worked on previous vaccine safety reviews, reviews that have shown a greater concern for politics than the truth. (Dr. Stratton:...The point of no return, the line we will not cross in public policy is pull the vaccine, change the schedule. We could say it is time to revisit this, but we would never recommend that level. Even recommending research is recommendations for policy. We wouldn't say compensate, we wouldn't say pull the vaccine, we wouldn't say stop the program (p.74).)
Although it has branded itself as a kind of “science court” for controversial issues, the IOM’s performance as a trustworthy tribunal has been poor: when the rules of jurisprudence are unlikely to lead to the outcome the sponsors and the staffers have been looking for, the IOM changed the rules instead of taking the heat. In October 2006, a few members of the autism community met with IOM President Harvey Fineberg to share a blistering critique. A short version of the materials we presented is (HERE) and a longer version (HERE). Mark Blaxill

By Julie Obradovic
 
A New IOM Panel
 
On March 20, 2009 the Institute of Medicine officially notified the public of the provisional appointment of a new IOM Committee related to vaccines. The committee was contracted by HRSA to review epidemiological, clinical and biological evidence regarding adverse health events associated with specific vaccines covered by VICP (Vaccine Injury Compensation Program). Vaccines to be reviewed include Varicella Zoster, Influenza, Hepatitis B, and HPV; additional vaccines could be added to the review if more funding is secured.
 
The committee will author a consensus report with conclusions on the evidence bearing on causality and the evidence regarding the biological mechanisms that underlie specific theories for how a specific vaccine is related to a specific adverse event. The provisional appointments to the IOM's new Committee to Review Adverse Events to Vaccination have been posted on the Current Project System on the National Academies Website. There is a 20 day period for formal public comment beginning the day of this notice.
 
The project will be directed by Dr. Kathleen Stratton.
 
Who is Dr. Stratton?
 
If Dr. Stratton's name looks familiar it is because this is not the first time she has served on an IOM committee regarding vaccines.  In fact, Dr. Stratton has served on several IOM panels, most famously perhaps as project director for the panel that reviewed the role of Vaccines in Autism (2004). In this instance the panel she directed came to the conclusion the evidence favored rejection of a causal relationship; even more, her committee went so far as to suggest further study of the relationship wasn't warranted.

A Character Assassin Caught in the Act

By Dan Olmsted and Mark Blaxill

At the source of the General Medical Council’s (GMC) investigation and trial of Dr. Andrew Wakefield lies a man named Brian Deer. In his first Sunday Times article on February 22, 2004, Deer accused Wakefield of launching a “public panic” over the connection between the MMR vaccine and autism by failing to disclose his conflict of interest and participation as an expert witness on behalf of a group of families involved in vaccine litigation against the British government. Since then, Deer has alleged many things. Among them are the following: that he is an independent, investigative journalist; that he is not a complainant in the GMC investigation; that Wakefield is guilty of medical misconduct; and that Wakefield and his co-authors committed scientific fraud.

According to documents obtained by Age of Autism (Melanie Philips of The Spectator reported on these documents last month, but we provide for the first time a copy of the key document HERE and new information on Dr. Wakefield’s complaint against Deer; a copy of Dr. Wakefield's original 3/13 complaint to PCC is HERE and the addendum is HERE. Deer’s claim that he is not the complainant in the GMC investigation is false. In a February 25, 2004 email addressed to Tim Cox-Brown of the GMC, Deer first listed the GMC reference numbers of Drs Andrew Wakefield, John Walker-Smith and Simon Murch, and then wrote the following opening sentence.

“Following an extensive inquiry for the Sunday Times into the origins of the public panic over MMR, I write to ask your permission to lay before you an outline of evidence that you may consider worthy of evaluation with respect of the possibility of serious professional misconduct on the part of the above named registered medical practitioners”

Authors in Search of a Little Legal Research

Editor's Note: Dan Olmsted and Mark Blaxill are working on a book on the roots and rise of autism (that's us in the photo on a recent weekend hip deep in studies and books). AOA readers have generously collaborated with us on research and translation, which has helped greatly. Now we are in need of some hopefully brief legal research that is beyond us. If you are a lawyer and/or have access to a legal database, there are a couple of very specific things we could use some help checking out -- this would not be an extensive or elaborate effort. Please e-mail olmsted.dan@gmail.com if you could provide assistance. We expect our book to be published next year.

Best of A of A: More Bullshit from the Apparatchiks

Managing Editor's Note: We thought this piece deserved a second run - Mark wrote it after the Hannah Poling decision last year when the press referred to Miss Poling as having "autism like symptoms." 

By Mark Blaxill

Some people get a little squeamish when others use the word bullshit to describe a certain kind of bureaucratic doublespeak. Not me.  I like to remind the squeamish among us that bullshit is a precise term in the philosophy of science and it’s entirely respectable to use the word in polite company. To support my case, I point friends to Harry Frankfurt, emeritus Professor of Philosophy at my alma mater, Princeton University, who elaborated on the relevant philosophical concepts at some length in his wildly popular essay, On Bullshit, in which he famously distinguished bullshit from lying.

Bullshitting is not exactly lying, and bullshit remains bullshit whether it's true or false. The difference lies in the bullshitter's complete disregard for whether what he's saying corresponds to facts in the physical world: he does not reject the authority of the truth, as the liar does, and oppose himself to it. He pays no attention to it at all. By virtue of this, bullshit is a greater enemy of the truth than lies are.

Voting Himself Rich: CDC Vaccine Adviser Made $29 Million Or More After Using Role to Create Market

By Dan Olmsted and Mark Blaxill

Dr. Paul Offit of the Children’s Hospital of Philadelphia (CHOP) took home a fortune of at least $29 million as part of a $182 million sale by CHOP of its worldwide royalty interest in the Merck Rotateq vaccine to Royalty Pharma in April of last year, according to an investigation by Age of Autism. Based on an analysis of current CHOP administrative policies, the amount of income distributed to Offit could be as high as $46 million.

There is nothing improper about receiving compensation for a patented innovation; but the extraordinary valuation placed on CHOP’s patents raises concerns over Offit’s use of his former position on the CDC’s Advisory Committee on Immunization Practices to help create the market for rotavirus vaccine -- to effectively vote himself rich.

Offit has steadfastly refused to say how much he made from the vaccine. Based on the income distribution guidelines set forth in CHOP’s current administrative policy manual (HERE) entitled “Patent and Intellectual Property Policy,” Offit’s share of this transaction -- the “inventor’s share of net income” -- would have earned him a personal distribution of 30%. In a Moody’s report dated June 2008, CHOP reported net proceeds from the Rotateq transaction of $153 million, a deal basis that would put the value of Offit’s 30% share at $45.9 million.
 
Although the royalty transaction amounts and current CHOP inventor shares are publicly known, several factors complicate a precise calculation of Offit’s income. Royalty Pharma paid $182 million for the Rotateq royalty stream, but CHOP reported proceeds of only $153 million. Since most universities calculate income based on net royalties, the lower number might more closely reflect the basis for calculating Offit’s income. If CHOP applied an inventor share of 30% to a transaction value of $153 million they would have then been required to distribute $45.9 million to Offit.

Mark Blaxill on ABC's Chronicle: Toxic Kids

Age of Autism Editor at Large Mark Blaxill was featured on Boston's Chronicle news program in a feature about toxic kids. 

What is making American children sick? Cancer rates are climbing. Cases of autism, attention-deficit hyperactivity disorder, and asthma are through the roof. Is the answer all around us – in the food our kids eat, the air they breathe, and the clothes they wear? Tonight, Chronicle investigates a provocative thesis about the American lifestyle and its effects on children's health

The show featured the book, Poisoned Profits: The Toxic Assault on Our Children (see the website HERE) by Philip and Alice Shabecoff.  Take note of the link to our sponsor www.SafeMinds.org on the WCVB site!

The four progam links are below. Mark is in the first link. See the show website HERE.

First segment, with Mark Blaxill

Second segment

Third segment

Fourth segment