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The myth that the IACC doesn’t support environmental causation research

21 Oct

Say a lie often enough and people will believe you. That is the strategy over at the Age of Autism blog, and for the organizations that sponsor it.

One of their favorite lies is the idea that the IACC (Interagency Autism Coordinating Committee) doesn’t support research into environmental causes of autism.

We are lucky that the IACC has published their research portfolio, showing not only the budgeted amounts, but the amounts committed so far. Below is page 11 from this document, for “Question 3. What Caused This to Happen and Can This Be Prevented?”

Question 3. What Caused This to Happen and Can This Be Prevented?
3.1 Initiate studies on at least five environmental factors identified in the recommendations from the 2007 IOM report “Autism and the Environment: Challenges and Opportunities for Research” as potential causes of ASD by 2010. IACC Recommended Budget: $23,600,000 over 2 years. 2008 research funding $7,600,673

3.2 Coordinate and implement the inclusion of approximately 20,000 subjects for genome-wide association studies, as well as a sample of 1,200 for sequencing studies to examine more than 50 candidate genes by 2011. IACC Recommended Budget: $43,700,000 over 4 years. 2008 research funding $4,065,392

3.3 Within the highest priority categories of exposures for ASD, identify and standardize at least three measures for identifying markers of environmental exposure in biospecimens by 2011. IACC Recommended Budget: $3,500,000 over 3 years. 2008 research funding $713,227

3.4 Initiate efforts to expand existing large case-control and other studies to enhance capabilities for targeted gene – environment research by 2011. IACC Recommended Budget: $27,800,000 over 5 years. 2008 research funding $4,603,867

3.5 Enhance existing case-control studies to enroll broad ethnically diverse populations affected by ASD by 2011. IACC Recommended Budget: $3,300,000 over 5 years. 2008 research funding $184,628

3.6 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. IACC Recommended Budget: $25,100,000 over 7 years. 2008 research funding $1,803,628

3.7 Conduct a multi-site study of the subsequent pregnancies of 1,000 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. IACC Recommended Budget: $11,100,000 over 5 years. 2008 research funding $2,742,999

3.8 Identify genetic risk factors in at least 50% of people with ASD by 2014. IACC Recommended Budget: $33,900,000 over 6 years. 2008 research funding $36,966,711

3.9 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. IACC Recommended Budget: $44,400,000 over 5 years. 2008 research funding $17,297,788

Adding those topics funding environmental causation and gene-environment causation, I get a budget of $135,500,000 for six topics.

Summing the gene only projects (3.2 and 3.8) I get $77,600,000, for two projects.

Yes, about 60% of the causation budget is on environment and gene-environment mechanisms.

Why isn’t the Age of Autism blog writing about this? Why aren’t Generation Rescue, SafeMinds, the National Autism Association…all of the “environmental causation” organizations happy with this level of funding?

Why isn’t Lyn Redwood, IACC member and SafeMinds co-founder claiming a huge victory? How about Mark Blaixill, who is on an IACC subcommittee, and is also a member of SafeMinds? Why isn’t he discussing this?

The reason is obvious, to me at least. There isn’t a specific project calling for research into vaccines.

Guess what, there isn’t anything ruling out vaccine research either.

If the vaccines-cause-autism groups want to call for transparency in the process, why don’t they practice it? Why are they hiding information from the autism community? Do they actually care about environmental causation aside from vaccines? It doesn’t seem like it to this observer.

NIH director on the lack of trust within the autism community

20 Oct

This video is taken from the Simons Foundation blog. The Simons Foundation was able to get NIH Director Francis Collins to make a statement about the resignation of Story Landis from theIACC .

I am impatient for answers. If there were any good evidence that vaccines were causal in autism, I’d be pushing for research on that subject.

As Dr. Collins notes, we should not assume that there is “just one path” that will get us to the truth. I would assert that it is precisely the vaccine/autism organizations who can’t leave behind their one path. We need to move forward, not spin our wheels in the same place that hasn’t proven fruitful for the past 10 years. It’s time to move beyond vaccines.

http://vimeo.com/moogaloop.swf?clip_id=7156587&server=vimeo.com&show_title=1&show_byline=0&show_portrait=0&color=6854a1&fullscreen=1

Neurodiverse intimidation

20 Oct

A recent comment on this blog used this video as an example of how the Neurodiverse community uses “intimidation”. Take a look for yourself:

video below

I thank Mr. Crosby for bringing this video to my attention. It is awesome. I also appreciate the opportunity to see what people mean when they make claims that the neurodiverse community. What others label “intimidation” is to me–and I bet to the almost everyone who would watch this video–as a very respectful presentation by a well spoken person.

Wired Magazine: an epidemic of fear

20 Oct

Amy Wallace has written her first piece for Wired Magazine, and it is sure to draw a lot of attention. The article, An Epidemic of Fear: How Panicked Parents Skipping Shots Endangers Us All, covers a lot of ground. The main focus is basically an extended interview with Dr. Paul Offit.

Just in case there are any readers who haven’t heard of Dr. Offit, he is an infectious disease specialist, co-inventor of a rotavirus vaccine, and outspoken critic of the idea that vaccines caused an autism epidemic. Or, as Ms. Wallace writes in her introduction, “To hear his enemies talk, you might think Paul Offit is the most hated man in America.”

Orac, over at Respectful Insolence, has already blogged the article.

The piece points out the very real dangers of vaccine preventable diseases. It also discusses briefly some of the luminaries of the anti-vaccine movement: people like Jenny McCarthy, Robert F. Kennedy Jr and his deeply flawed article in Rolling Stone, Barbara Loe Fisher…unfortunately it is a long list.

Ms. Wallace also discusses autism’s thriving alternative medical community. Search for “Enter the snake oil salesmen” if you want to find that section quickly. Ms. Wallace attended an Autism One conference and reports on her findings.

In discussing how the membership in the CDC’s Advisory Committee on Immunization Practices has changed from mostly medical and vaccine professionals to mostly epidemiologists and public health professionals, Ms. Wallace writes:

That’s not by accident. According to science journalist Michael Specter, author of the new book Denialism: How Irrational Thinking Hinders Scientific Progress, Harms the Planet and Threatens Our Lives, the controversy surrounding vaccine safety has made lack of expertise a requirement when choosing members of prominent advisory panels on the issue. “It’s shocking,” Specter says. “We live in a country where it’s actually a detriment to be an expert about something.” When expertise is diminished to such an extent, irrationality and fear can run amok.

Dr. Offit makes a very good point in the article about risk:

“The choice not to get a vaccine is not a choice to take no risk,” he says. “It’s just a choice to take a different risk, and we need to be better about saying, ‘Here’s what that different risk looks like.’ Dying of Hib meningitis is a horrible, ugly way to die.”

Unfortunately, we now have highly visible doctors like “Doctor Bob” Sears who recommend that people who don’t vaccinate “hide in the herd” so to speak. He tells people in his book that if they don’t vaccinate they should keep quiet about it so that vaccination rates stay high and their family remains protected by the rest of us who do vaccinate.

While morally reprehensible, Dr. Bob’s advice is accurate. From the Wired story:

The frightening implications of this kind of anecdote were illustrated by a 2002 study published in The Journal of Infectious Diseases. Looking at 3,292 cases of measles in the Netherlands, the study found that the risk of contracting the disease was lower if you were completely unvaccinated and living in a highly vaccinated community than if you were completely vaccinated and living in a relatively unvaccinated community. Why? Because vaccines don’t always take. What does that mean? You can’t minimize your individual risk unless your herd, your friends and neighbors, also buy in.

Wired makes special note of the organizations which are particularly vocal in the “anti-vaccine” message:

Anti-Vaccine Websites

Though many of these organizations would not define themselves as such, these are the most active organizations and websites in the current battle against vaccines:

National Vaccine Information Center
Autism One
Generation Rescue
SafeMinds
Treating Autism
National Autism Association
Autism File

As Orac points out, the Age of Autism blog would fit in well with the above list.

I wish I could bet on the criticisms that are headed towards Dr. Offit after this article. I’m fairly confident I can pick out the paragraphs that will be focused upon.

If you read the article, you will understand this: Bonnie, thanks for loaning us your husband. He is a true friend to children.

Federal judge stops IHSS cuts in California

20 Oct

California is facing severe budget shortfalls. High on the chopping block for cost-cutting are services to the disabled.

One form of support is IHSS (In Home Supportive Services).

The IHSS Program will help pay for services provided to you so that you can remain safely in your own home. To be eligible, you must be over 65 years of age, or disabled, or blind. Disabled children are also eligible for IHSS. IHSS is considered an alternative to out-of-home care, such as nursing homes or board and care facilities.

Here is an update from CDCAN, the California Disability Community Action Network.

OAKLAND, CALIF (CDCAN) [Updated 10/19/09 12:10 PM (Pacific Time)- Federal District Court Judge Claudia Wilken in Oakland blocked the state from implementing cuts to eligibility and services under the In-Home Supportive Services (IHSS) program,
granting a preliminary injunction requested by attorneys representing persons who receive In-Home Supportive Services, saying from the bench that substantial harm, damage and injury which would result if the cuts went forward.

The judge’s order represented a sweeping major victory for advocates for persons with Disabilities, mental health needs, the blind, low income seniors, their families, IHSS Workers and advocacy groups.

The judge’s order blocks the State from implementing major cuts to eligibility based on a person’s “functional index score” and reductions in domestic and related services based on a person’s “functional index rankings”.

Judge Wilken said that the State’s use of the “functional index rankings” and “functional index scores” were clearly not based on need, that essential services could be withdrawn arbitrarily, and that “people could lose something irreplaceable – the ability to remain safely in their homes.”

The judge issued her injunction that stopped the cuts from going forward as scheduled Because she believed that the plaintiffs – the persons with disabilities and others who filed the lawsuit were likely to win in a the trial that the cuts to services under IHSS using the “functional index score” and “functional index rankings” as the basis to make cuts to eligibility and domestic and related services violated federal law. The judge denied a request (motion) from the State to “stay” (delay effect date of her injunction) until her ruling can be appealed (“staying” her injunction would have allowed the cuts to go forward until the case could be heard in the US 9th Circuit Court of Appeals)

The judge issued her ruling from the bench from a two hour hearing this morning.

More details later today.

In other words–the cuts to IHSS are on hold during the state’s appeal. The alternative, make the cuts while the state appeals, would have surely meant that some people would have lost their ability to stay “in home”.

Blood Mercury Concentrations in CHARGE Study Children with and without Autism

19 Oct

New paper, just out from the U.C. Davis MIND Institute: Blood Mercury Concentrations in CHARGE Study Children with and without Autism.

The Authors are

Irva Hertz-Picciotto, Peter G. Green, Lora Delwiche, Robin Hansen, Cheryl Walker, and Isaac N. Pessah.

Abstract:
Background: Some studies have reported higher blood Hg levels in persons with autism, relative to unaffected controls. Objectives: To compare blood total Hg concentrations in children with autism or autism spectrum disorder (AU/ASD) and typically developing (TD) controls in population-based samples; to determine the role of fish consumption in differences observed.

Methods: The Childhood Autism Risk from Genetics and the Environment (CHARGE) Study enrolled children aged 2-5 years. After diagnostic evaluation, we analyzed three groups: AU/ASD; non-AU/ASD with developmental delay, DD; and population-based TD controls. Mothers were interviewed about household, medical and dietary exposures. Blood Hg was measured by ICP-MS. Multiple linear regression analysis was conducted (n=452) to predict blood Hg from case status controlling for Hg sources.

Results: Fish consumption strongly predicted total Hg concentration. AU/ASD children ate less fish. After adjustment for fish and other Hg sources, blood Hg levels in AU/ASD children were similar to those of TD children (p=0.75); this was also true among non-fish eaters (p=0.73). The direct effect of AU/ASD diagnosis on blood Hg not through the indirect pathway of altered fish consumption was a 12% reduction. DD children had lower blood Hg concentrations in all analyses. Dental amalgams in children with gum-chewing or teeth-grinding habits predicted higher levels.

Conclusions: 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.

I don’t have the time to read and summarize the paper yet. But it looks like another nail in the (already nailed down) coffin lid of the mercury hypothesis.

Dr. Landis resigns from IACC: Vaccine-autism lobby shot themselves in the foot

19 Oct

Here’s a big “oops” moment for the good people at the Age of Autism blog and the organizations it represents.

They may have forced the resignation of someone sympathetic to their cause.

Here’s the back story. Dr. Story Landis is one of the government’s representatives on the Interagency Autism Coordinating Committee (IACC). She wrote some notes during a past meeting. After the meeting, someone found the notes and passed them to a blogger at the Age of Autism, who published one of them with a scathing blog post calling for her resignation.

Dr. Landis has resigned.

Note that the blog post was timed to coincide with last week’s IACC meeting. Also note that no one appears to have contacted Dr. Landis prior to posting the blog piece. For that matter, no one appears to have contacted her prior to her resignation.

Here’s what the note read:

I wonder if Lyn Redwood is pushing autism as multisystem disorder to feed into vaccine injury?

Would be a good justification for looking at vaccine injured kids who have gotten awards.

Mr. Kirby has blogged the incident. He includes an email he received from Dr. Landis, quoted below:

I can understand people’s reaction seeing just the note that I wrote during the recent IACC scientific workshop. I felt it important to apologize immediately to the autism community, which I did at yesterday’s IACC, subcommittee meeting. Let me repeat my apology for the record: “I have seen some thoughts that I jotted down during the recent IACC meeting posted on Katie Wright’s blog. I am very sorry that my personal reflections during the meeting have been taken out of context and have been interpreted by the community in ways that I would never intend. As a responsible and committed member of the IACC I am sorry for the upset that it has caused and the concerns that it has raised.”

The other part of my note addressed the fact that it is important for autism researchers to study the children who have been most profoundly affected by their response to vaccines. That in no way mitigates my sincere apology to the families who interpreted my note to be uncaring and disrespectful.

Repeated for emphasis: “The other part of my note addressed the fact that it is important for autism researchers to study the children who have been most profoundly affected by their response to vaccines. ”

If things are as they appear, the Age of Autism bloggers may have just gotten someone sympathetic to their goals to resign from the IACC.

Mr. Kirby’s comment about this explanation set of an irony meter:

A lot of people I have spoken with were also surprised by the statement, given the general hostility toward vaccine research they have encountered at the IACC.

Hostility? When it comes to the IACC there is a lot of hostility, I will grant that. But it flows from certain autism groups and the Age of Autism blog in particular towards the IACC. Mr. Kirby has joined his fellow Age of Autism bloggers in the intense hostility shown towards the IACC and its chair, Dr. Thomas Insel. Watch the recent interview that Mr. Kirby did with Sharyl Attkisson if you would like to confirm this.

I realize that many people are upset that the IACC is not funding vaccine research (even though I am not one of them). But, “hostility”? No. The IACC and Dr. Insel have remained respectful on the subject.

Let’s recap many of the mistakes made in this story

1) Dr. Landis should have been more careful with her private questions and not left the notes behind

2) Whoever did the “dumpster dive” embarrassed the autism community. I’m sure it would have been considered justified if they hadn’t screwed up and forced the resignation of someone sympathetic to their cause. But that leads us to:

3) The Age of Autism decided that a surprise attack was more important that gathering all the facts and published the blog piece without comment from Dr. Landis.

4) Bloggers, including myself, didn’t step forward to defend Dr. Landis’ right to pose reasonable questions.

5) Dr. Landis didn’t defend her own right to pose reasonable questions.

6) Dr. Landis resigned. Yes, I consider that a mistake.

7) Apparently Dr. Insel accepted her resignation. I consider that a mistake as well.

Let’s take a look again at the question Dr. Landis posed that caused such a stir: “I wonder if Lyn Redwood is pushing autism as multisystem disorder to feed into vaccine injury?”

Why is this such an outlandish question? Ms. Redwood represents SafeMinds, an organization which promotes the idea that vaccines caused an epidemic of autism. In their web page on Ms. Redwood’s activities on the IACC, SafeMinds made it extremely clear that autism as vaccine injury was the number one priority for the meeting where Dr. Landis wrote her note. It was perfectly reasonable for Dr. Landis to wonder how the idea of multi-system disorder ties into the idea of autism as vaccine injury. It could have been phrased better. Better yet, it could have been phrased better and posed as a question directly to Lyn Redwood. Unfortunately, the very same hostility that the bloggers Lyn Redwood’s organization sponsors make that nearly impossible. The same politicization of any statement about vaccines and autism that her organziation and Mr. Kirby, their publicist, make it nearly impossible to have that discussion.

Yes, there were people who thought the Age of Autism blog post was a good idea. Many probably still do. The same people are likely writing this post off as gloating at their mistake. This isn’t gloating. This is disgust. This is anger that a bunch of people have ratcheted up the hostility towards the IACC to a level that impedes discussion and progress, and then have the gall to blame the IACC for the hostility.

The fact that you guys shot yourselves in the foot in the process only serves to prove my point.

Don’t Write Me Off

13 Oct

This is the slogan of the latest campaign from the National Autistic Society. It launched today at a reception in Parliament where over100 MPs heard NAS Council member Thomas Madar talk about his experience as an autistic adult and saw the latest campaign video.

The campaign addresses the lack of support adults with autism face when looking for a job or trying to access benefits. New NAS research has revealed that, of the adults with autism we surveyed:

· One third are currently without a job or access to benefits

· Over half have spent time with neither a job nor access to benefits, some for over ten years

· Just 15% have a full-time job

· 79% of those on Incapacity Benefit want to work

· 82% who have applied for benefits say that they needed support to apply.

As with previous campaigns these statistics will be brought to life with the personal stories of adults and parents directly affected by these issues. For news, resources and to take part in the campaign visit the campaign website

Tags: , ,

Comments of the Month from the Men of the Hour in science

10 Oct

Sometimes I read old magazines and newspapers for articles on disability. It is quite depressing reading about a time when eugenics was discussed openly and an accepted idea.

In such a search recently, I found this article. It is titled, Comments of the Month from the Men of the Hour in science.

Masthead for Comments from Men of Science

Masthead for Comments from Men of Science

This is from the magazine Popular Science, from 1923.

I cut out a depressing comment, from “Man of the Hour”, William Starr Myers of Princeton University. He makes a comment about the feeble minded (one of the old terms for intellectually disabled) and how the “Class A and Class B people do the work of the citizenship of this country.”

Then I saw the “Man of the Hour” listed beneath that sad statement. Prof. Frederick J. Rogers of the physics department Stanford University.

Class A brain Frederick J Rogers

Class A brain Frederick J Rogers

[edit]
If you find that tough to read, here it is typed out:

PROFESSOR WILLIAM STARR MYERS
Department of History and Politics, Princeton University

OF 105,000,000 persons in the United States, statistics show that 45,000,000 are subnormal and never would have the mentality of a child of 13: 15,000,000 are feeble minded and their brain power forever would be that of a child of 8. Of the remaining 45,000,000, at least 25,000,000 are classified as mediocre: 5,000,000 are rated as class A in mentality, and 15,000,000 as class B.

“Class A and Class B do the work of the citizenship of the country.”

followed closely by:

PROFESSOR FREDERICK J. ROGERS
Of the Physics Department, Leland Stanford, Jr., University, whose body accidentally, came in contact with a 3000 Volt electric current–a voltage usually used for electrocution.

ELECTROCUTION is an entirely painless way of inflicting death. It knocked me cold. I never had a pain or a pang–in fact I never knew what happened to me until I was revived 15 minutes later.

“I can’t describe how it seems to be dead. For I have no recollection of sensations until I was revived.

“Death in electrocution is usually caused by stoppage of the heart. Sometimes stoppage of respiration causes asphyxiation.”

I wonder how many people in 1923 found it ironic that a “Class A” person like Prof. Rogers, the type upon whom we all depend, was “Man of the Hour in Science” for having electrocuted himself.

Very often it isn’t the gifts you are given but how you use them that counts.

Sharyl Attkisson interviews David Kirby…and oh is it bad

8 Oct

Have a look for yourself:

http://cnettv.cnet.com/av/video/cbsnews/atlantis2/player-dest.swf
Watch CBS News Videos Online

David Kirby, interviewed by Sharyl Attkisson. Talk about faux-news. For those luckily unfamiliar with Ms. Attkisson, here are some of the pieces done on this blog about her. Ms. Attkisson has a history of interviewing other members of the press and not being critical at all of their unsupported claims. She did this with Bernadine Healy, who made some unfounded claims about the IOM. When a study came out disproving a study by Maddy Hornig on mice and thimerosal that is, Ms. Attkisson blogged the Thoughtful House (Andrew Wakefield) press release on the subject. There’s more, but that gives you a taste of her history.

Today she interviewed David Kirby, author of “Evidence of Harm” and Huffington Post blogger.

To start, David Kirby apparantly has rewritten his book (yes, that is sarcasm). It is titled, “Evidence of Harm, Mercury in Vaccines and the Autism Epidemic: A Medical Controversy”.

But according to the interview, his book isn’t primarily about mercury in vaccines. Instead it is all about “increasing environmental exposures, toxins in children throughout the 1990’s and into the early 2000’s from both mercury background mercury environmental mercury which is on the increase and also mercury and other heavy metals and toxic metals that are included in vaccines that we give our children.”

Notice how thimersosal (mercury in vaccines) is downplayed compared to environmental mercury. That’s called revisionist history. Take a look at the back cover from the book (click to enlarge):

Back Cover from David Kirby's Evidence of Harm

Back Cover from David Kirby's Evidence of Harm

A commenter on this blog called the recent National Children’s Health Survey to be the worst sort of prevalence study. It can get much worse. For example–according to David Kirby, when he went through the subway he didn’t see anyone obviously autistic. Yes, David Kirby, epidemiologist and diagnostician has found a dramatically low prevalence amongst the New York subway riders.

David Kirby reminds us all that Asperger’s syndrome is a disability. Mr. Kirby, go back and tell that to Lenny Schafer, the “commenter of the week” on your blog, the Age of Autism.

If someone made a comment on this blog like Mr. Shafer did he would be booed off the stage. Here’s an excerpt:

And let us hope that the upcoming DSM-V gets clearer about defining autism only as a disability — and kicks the high functioning ND autism squatters onto the personality disorder spectrum where they belong.

Your blog gave him a free T-shirt. Don’t lecture us about disability.

Dr. Thomas Insel, director of the National Institutes of Mental Health and chair of the Interagency Autism Coordinating Committee declined to be interviewed by Ms. Attkisson.

A sincere “good job” goes out to Dr. Insel. After the way Ms. Attkisson showed a clear bias in doing her story on Dr. Offit, I can completely understand Dr. Insel declining the interview.

The second half of the interview discusses Mr. Kirby’s new book, the use of antibiotics on large farms.

No, seriously, they moved from Autism to animal farms.

Way to plug David Kirby’s new book, Sharyl!

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