Search results for 'generation rescue'

AutismOne Generation Rescue conference expells registered attendees

2 Jun

Autism News Beat has this story in full in Listening to parents at AutismOne. AutismOne is a parent convention with a major focus on alternative medicine. To put them in perspective, Jenny McCarthy is a frequent keynote speaker and Andrew Wakefield was honored by AutismOne last year after it was revealed that his study was possibly tainted by misreporting of results.

If you recall, AutismNewsBeat was expelled from a previous AutismOne conference. He had just asked, respectfully, an important question of Hannah Poling’s mother (Hannah Poling is the child whose case before the vaccine court was conceded on the basis of vaccines aggravating an underlying mitochondrial disorder). To my knowledge, AutismNewsBeat has no been given a clear reason for the expulsion.

A filmmaker/Journalist was present at this year’s AutismOne. Lars Ullberg had applied for press credentials and was denied. AutismOne responded to this request stating:

Autism One is not prepared to offer press passes to you or your crew. Although you and each of your crew members may pay the registration fee as regular attendees, subject to the usual terms of attendance, neither you nor your crew members are permitted to conduct any videography, photography, audio recording, or press interviews; furthermore neither you nor your crew members are permitted to quote attendees, presenters, exhibitors, volunteers, or staff in any manner that will be quoted, “on the record,” or used for public or private media or instructional purposes. Additionally, you and your crew members must identify yourselves accurately with your affiliations to those to whom you speak and also not mislead them to think that you are simply seeking information with which to help your child. Finally, you may not eavesdrop on private conversations between attendees. In summary, Autism One grants no permission to you or your crew to report on this conference or its attendees. Should we become aware that you are not following these guidelines, we will not hesitate to ask you to leave the conference.

AutismNewsBeat asked AutismOne for details on why Mr. Ullberg was removed from the conference, but he has yet to receive a response.

I find the wording and possible intent of this sentence rather odd: ” Autism One grants no permission to you or your crew to report on this conference or its attendees”. If an attendee chose to be interviewed, would that not be OK? The conference appears to be speaking for its attendees.

In addition, a public health official was in attendance for this year’s AutismOne conference. This person also was asked to leave. According to AutismNewsBeat:

A staff member of a western state department of public health was reportedly attending a session on vaccines and parental rights. According to one source, the speaker was advising parents how to apply for and receive vaccine exemptions. The session was interrupted by an AutismOne organizer who commandeered a microphone to announce that a state health department staff member was present, so parents should be careful about what was discussed.

A short time later four Westin O’Hare security guards entered the room, identified the staffer, and directed her to leave the conference facility.

Perhaps in the case of the journalist, AutismOne was afraid of bad press. But haven’t parent groups been asking for some time for people to listen to them? A public health official attends the conference in order to listen and is expelled.

Generation Rescue and Autism One appear to be working in a very defensive, entrenched mode. Internet chatter is mentioning closed sessions where Andrew Wakefield spoke. Closed sessions? Expelling journalists? Refusing permission for journalists to report on what attendees have to say–even if the journalist clearly identifies himself? Asking public health officials to leave for no apparent reason? Again, this comes across to me as an entrenched, defensive mindset.

Jenny McCarthy asking for grant from Pepsi for Generation Rescue

9 Apr

Pepsi has a grant program, the Pepsi Refresh Project. The idea is simple, organizations and people can apply for grants in different categories ($5K, $25K, $50K and $250K). Those projects that get the most votes each month get funded.

Jenny McCarthy is asking people to vote for Generation Rescue’s plea: Help children with Autism throughout the USA. The stated purpose is:

– Provide biomedical treatment grants for families who can not afford it. Each grant provides two visits with a physician specifically trained to treat autism and diagnose the child’s needs. The grant also provides essential vitamins and minerals that scientific studies have shown are deficient in children with autism, as well as science-based laboratory testing.

– Each grant costs $2,500. The support of $250,000 will allow us to provide treatment for 100 families.

Here is what Generation Rescue had to say about their program on their website:

Generations Rescue’s Rescue Family grants are designed to provide support to individuals and families affected by Autism Spectrum Disorders. Each grant recipient will receive 2-doctor visits with a specially trained physician who treats autism; vitamins, minerals and supplements for 90 days, a Generation Rescue Rescue Mentor and dietary intervention training.

$2,500 buys $90 worth of supplements and two doctor visits?

The Pepsi idea is pretty cool. Here’s my suggestion: go to the website, search under the term disability, and vote for some cool projects.

What changes are in store for Generation Rescue?

9 Apr

If you haven’t read the celebrity gossip news you may have missed it (and good for you!). Jenny McCarthy and Jim Carrey have split. As an aside, in classic Hollywood fashion, news also just came out that her ex husband is in a new celebrity relationship. I’ll never understand the way Hollywood uses relationships for image promotion.

That said, this is not an easy thing to blog about. First, there is the fluff component. This isn’t a celebrity gossip blog. Second, Jenny McCarthy’s kid is only seven. He doesn’t deserve to lose another father figure. I wish him well.

One question this poses is whether Jim Carrey will continue with Generation Rescue?

It appears not. Generation Rescue has revamped their website. The picture of Jim Carrey, Jenny McCarthy and Evan McCarthy is gone. GR is now just “Jenny McCarthy’s autism organization”. Jim Carrey is no longer on the page of the Board of Directors.

Jenny McCarthy and Jim Carrey were the wealthy celebrity couple that revitalized Generation Rescue. And, let’s face it, Jim Carrey is the part of the couple with most of the celebrity and wealth.

The Generation Rescue website is probably in flux so we shouldn’t jump to any conclusions about what is missing as of now. That said, consider this:

Not only is Jim Carrey missing, but Dr. Jill James is no longer listed as a part of their science advisory board.

Mention of Desiree Jennings is gone. (She is the person who claimed that a flu vaccination caused dystonia, a claim that didn’t appear to hold up to scrutiny ). I don’t think this signals anything other than it was a convenient time to quietly pull support for someone who was, well, a liability.

On the main page for Generation Rescue, Jenny McCarthy is pushing hard to get a $250,000 grant from Pepsi. Is this prompted by the loss of Jim Carrey’s financial support? If you haven’t seen the plea from Ms. McCarthy, consider it. At least the first 20 seconds. That way you can hear her state that Generation Rescue “…helps and Treats thousands, millions of children with autism”

Yes, millions of children are supposedly helped by Generation Rescue. That would be more autistic kids than in the entire U.S..

I remember when Jim Carrey first hit the scene. He paid for a full page ad for Generation Rescue in USA Today. Just up and paid for it. Those ads cost over $200,000 as I recall. Now GR is pushing hard for a grant of that size.

Jim Carrey was a bit of a lightweight when it came to autism and disability issues. He demonstrated that clearly at the Green Our Vaccines rally. But, he was an asset to Generation Rescue. His leaving can’t be helping GR.

Is Generation Rescue trying to get Airborne to fund junk science?

8 Dec

The latest Generation Rescue newsletter leads me to believe that Airborne may be considering funding Generation Rescue. Here is the latest Generation Rescue newsletter:

Generation Rescue is in the final stages of receiving grant funding for a vaccine research study on the long term effects of the current U.S. recommended schedule. The last thing we need are declarations of support from our community who purchased Airborne Health.

1.) Did you purchase Airborne during May 1, 2001 – November 29, 2007?
2.) Do you support a vaccine research study on the long term effects of the current U.S. schedule?
3.) Do you support a study on vaccinated vs. unvaccinated children?

If you answer yes to all three of these questions, then you are a supporter and can help Generation Rescue provide ground breaking research.

The first 40 respondents will receive a free bag of revitaPOPS for completing a declaration of support.

Airborne is a supplement company that produces a product that claimed to be able to help people fight the common cold. They were involved in a class action lawsuit, resulting in an agreed payment of $23 million to consumers who purchased the product and who could prove they purchased it.

Steve Novella at Science Based Medicine discussed this.

My speculation: there is a big pot of the $23M left over, and Generation Rescue is trying to get Airborne to donate it to fund a vaccinated/unvaccinated study.

Of all the groups to manage such a study, Generation Rescue is way (WAY) down on the bottom of the list.

Generation Rescue has a history of misrepresenting and misusing science to forward their agenda. A few cases: their “phone survey” and their pseudo study on vaccination, childhood mortality and autism around the world.

The deadline to submit claims was December 5, 2009 (4 days ago). It strikes this observer as likely that only a small percentage of Airborne’s customers saved their receipts and were able to be compensated, leaving a large amount of money unclaimed.

I really wonder if Airborne knows what sort of group they are working with in Generation Rescue. Soon Airborne will receive testimonials from people who claim to have purchased their products, who want a Vaccinated/Unvaccinated study done by Generation Rescue.

The very fact that Generation Rescue is paying people to submit testimonials should raise red flags at Airborne.

In my opinion, if, for whatever reason, Airborne wants such a study done, they should find a group other than Generation Rescue to manage it. Funding Generation Rescue in this effort is just throwing money away. Airborne would do much better to fund something that could make a real impact in the lives of autistics.

Edit to add

1) Note that Airborne made no admission of fault in this settlement.

2) Here is a section from the settlement document, noting that money left over could be donated to a non-profit group

If the aggregate value of Valid Claims by Settlement Class Members is less than the amount of the Net Settlement Fund, the balance of the Net Settlement Fund, after payment of all Valid Claims of Settlement Class Members, shall be distributed cy pres to non-profit organizations. Class Counsel shall nominate the non-profit organization(s) that will be recipients of any cy pres funds, which shall then be subject to the consent of Defendants (which Defendants shall not unreasonably withhold) and approval by the Court. For purposes of this paragraph, Defendants agree
that in order to validly withhold consent, Defendants must demonstrate that including a non-profit organization as a recipient would substantially
undermine Defendants’ legitimate business interest or is otherwise improper, and that Defendants’ refusal to consent is not philosophically or
politically motivated. Plaintiff agrees that the Center for Science in the Public Interest will not be a recipient of cy pres funds.

It appears to this reader that the class action lawyers (Center for Science in the Public Interest ) get to nominate the possible non-proffits, and that Airborne has the right to reject. In order to reject a non-profit, Airborne would have to claim that the donation “would substantially undermine Defendants’ legitimate business interest or is otherwise improper, and that Defendants’ refusal to consent is not philosophically or politically motivated”

I wonder if class counsel has to prove that the nominations are not philosophically or politically motivated?

The kid’s autistic: the Generation Rescue website says so

30 Jul

If I were good at being respectfully insolent, I might try to make a joke out of how Generation Rescue has changed into Generate Revenue over the past year or so.  Generation Rescue’s website now offers multiple ways for people to spend money. From “let’s go shopping” to the multiple “shopping affiliates”, a portion of everything you spend from supplements to saunas could go to Jenny McCarthy’s autism organization.

But insolence is best left to the pros.

Aside: there is a link to have a personally autographed copy of Jenny McCarthy’s latest book sent out. I resisted the temptation to spend $99 to have a copy sent to CHOP with the inscription, “Paul Offit! You Rock!”

See, I should leave the insolence to the pros.

So, back to the story, I saw an interesting link on the Generation Rescue main page recently:

Concerned your child might have autism? Take our survey

Click the link and you get to a survey:

CARD Autism Symptoms Questionaire (ASQ – BETA) powered by: Generation Rescue

CARD being the “Center for Autism and Related Disorders”. They are an ABA group, headed by Doreen Granpeesheh, who also works at Thoughtful House (Andrew Wakefield’s clinic).

OK, I passed on the signed book, but I couldn’t resist the free survey.

I took the survey. I used information from a child I know very well; a child who is definitely not on the spectrum. Five minutes later I was surprised to find out that “A diagnosis of Pervasive Development Disorder Not Otherwise Specified (PDD-NOS, a mild version of autism) appears to be indicated.”

It wasn’t even close, according to the CARD/GR website.  Here are the results. The blue bar shows the results for the kid.  That bar is almost 6 times higher than the cutoff for PDD-NOS.  It’s also wider, what does that mean?

CARD/GR survey results (for non ASD kid)

CARD/GR survey results (for non ASD kid)


A little internet searching and I found this disclaimer for the survey in a Generation Rescue email: “This is not a substitute for a formal diagnosis by a professional, but it is a free and accurate way of determining if a diagnosis is likely.”

Accurate?  A non ASD kid is shown to to be well into the PDD-NOS range, and that’s accurate?

That was just one kid, and perhaps PDD-NOS is “mild” enough to be a common “misdiagnosis” of the survey. A friend of mine took the survey too, again using information from a real, non ASD kid.  The results?  Autism is indicated. Not PDD-NOS, but Autism.

At least the survey results included a link to the Generation Rescue guide to recovery.  With luck, and a lot of supplements, chelation, saunas, HBOT, we might just be able to recover these (non ASD) kids.

Maybe I can enter the recovery stories on the GR website to inspire others.

The reality of the situation is that this is no joking matter.  One major problem the California Department of Developmental Services ran into in recent years was early intervention groups who were both diagnosing and treating young “autistic” kids.  Funny thing, for some of the groups, none of the kids were eligible for services beyond age 3.

California is seeing big budget cuts to the Department of Developmental Services.  There is a very real possibility that groups are using inaccurate testing techniques to “diagnose” kids with ASD’s and then doing tens of thousands of dollars in possibly unwarranted therapies.   We just don’t have the money to throw away like that.  We never did.

Why Generation Rescue shouldn’t be on the IACC

27 May

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

3) This would lead to even more wasted time.

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

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

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

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

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

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

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

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

Sorry, you don’t vote down science.

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

6) They are rude.

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

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

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

MMR doesn’t cause autism: Generation Rescue study proves it!

7 May

Generation Rescue is making a big deal out of their “study” on autism and vaccines. This was a very dishonest attempt to promote their view on autism and vaccines, no doubts about that.

While analyzing their study, I realized how much easier it is to think like someone from Generation Rescue. Rather than challenging my own conclusions, why not go the GR way and start with a conclusion and look for data–any data–to support it! This is a LOT less work, and, heck, fun too!

Let’s take a look at the question, Does the MMR vaccine cause autism? Well, GR has conveniently given us enough data to draw a conclusion! Forget the fact that the GR “data” is bunk. Remember, no critical thinking allowed for this analysis–are we not pseudoscientists? We are Gee-Ar!

Let’s look at autism prevalence by country and compare that to whether they use the MMR vaccine or not. That sounds like we should be able to come to some definite conclusions!

Here are the autism prevalence by country and whether they use the MMR shot in their schedule. (European data are here, Israel here, Japan here).

We are going to ignore the data from the United States. Why? Because it doesn’t fit our conclusions, silly. If you are going to think like GR, go all the way, I say!

Country, prevalence, MMR status:

Denmark: 1 in 2,200. MMR at 15 months
Norway: 1 in 2,000. MMR at 15 months
Iceland: 1 in 1,100. MMR at 18 months
Israel: 1 in 1,000. MMR at 12 months.
Sweden: 1 in 862. MMR at 18 months
Finland: 1 in 719. MMR at 14-18 months
France: 1 in 613. MMR at 12 months and second shot at 13-24 months
Japan: 1 in 475. No combined MMR

Wait a minute–who has the highest prevalence? Japan!!!!

Who doesn’t use the combined MMR shot? Japan!!!

Pretty conclusive, I say (as long as I have my Generation Rescue Thinking Cap on!). MMR doesn’t cause autism!

Hey LeftBrain/RightBrain–this is too tempting. It is so much easier than real blogging. As compared to real scientific research, GR research is a snap! I may just have to accept the vaccine hypothesis just to save some time!

[edit to include correction from the comments!]

Generation Rescue: a dishonest autism charity?

6 May

Generation Rescue has a long history of promoting bad science. They even have tried their hand at it themselves before, with a phone survey that was so bad it would have earned a college freshman in epidemiology a failing grade.

So when they came out with their own “study” of vaccination rates around the world, you can imagine I didn’t expect it to be good. In fact, I just avoided it altogether until they sent me an email telling me how good it was.

So I looked.

It was worse than I expected. Far worse.

The “study” is here. Generation Rescue (GR) looks at the vaccine schedules for multiple countries and compares this with the infant mortality rate and autism rates in those countries.

I read it and, Oh…my…god… I expected bad science and poorly/biased interpretations. Instead, what I found was pretty clear evidence that Generation Rescue is knowingly distributing misleading information.

Before you get worried that this post is way long and question whether you really want to read the details, here’s the short version:

1) They compare infant mortality rates between the US and other countries–even though it is clear (according to their own expert no less!) that the US uses different criteria for infant mortality and it isn’t accurate to compare the US infant mortality to that in other countries.

2) They compare autism rates amongst countries to show the US has the highest rate, suggesting that the higher the number of vaccines the higher the autism rate. They just “forget” to tell you that the prevalences for the other countries are from old studies. We can debate why the reported autism prevalence is going up with time, but no one debates that the older studies report lower prevalences than we see now. So, why does Generation Rescue compare prevalence in the US using 2002 data for kids born in 1994 with, say, a Finnish study using 1997 data on kids born as early as 1979? I consider them very biased, but not incompetent enough to miss those fatal mistakes in their study.

3) They claim that the US has the highest vaccination rates and the highest autism rates. They conveniently ignore prevalence from Canada and the UK, which have comparable prevalences to the US and much much lower numbers of vaccines. Yes, you read that right, they left out the well known studies that would show that their conclusions are nonsense.

The worst part is that it is almost certain that Generation Rescue didn’t make an honest mistake. These are so obvious that whoever wrote that “study” had to know he/she was producing what amounts to the lowest form of junk pseudoscience.

For those who want the gory details, here they are:

Infant Mortality Rates

Generation Rescue points out that the reported infant mortality rate is highest in the United States, which also has the most childhood vaccines. All well and good, but can we really compare the infant mortality rates from country to country?

When I type infant mortality rate into a google search, the first hit is a Wikipedia page which, as it turns out, addresses exactly this question.The answer is a resounding “NO”, we can’t compare the US infant mortality rate with that of other countries.

While the United States reports every case of infant mortality, it has been suggested that some other developed countries do not. A 2006 article in U.S. News & World Report claims that “First, it’s shaky ground to compare U.S. infant mortality with reports from other countries. The United States counts all births as live if they show any sign of life, regardless of prematurity or size. This includes what many other countries report as stillbirths. In Austria and Germany, fetal weight must be at least 500 grams (1 pound) to count as a live birth; in other parts of Europe, such as Switzerland, the fetus must be at least 30 centimeters (12 inches) long. In Belgium and France, births at less than 26 weeks of pregnancy are registered as lifeless.

So, who wrote that 2006 article in US News & World Report?

Bernadine Healy.

Yep, the same Bernadine Healy that is Generation Rescue’s favorite “mainstream” doctor.

One has to believe that GR saw that article in Wikipedia and the US News article. They are, after all, Google Ph.D.’s. Given the author was Bernadine Healy, they have to have considered it accurate, don’t you think? And, yet, GR conveniently forgets to mention the differences in how the US and other countries count infant mortality in their vaccines cause autism “study”.

Autism Rates 1: Autism Prevalence by country

Start with the conclusion of the Generation Rescue “study”:

This study appears to lend credibility to the theory that the U.S. vaccine schedule is linked to the U.S. epidemic of autism, particularly when compared to the published autism rates of other countries.

Given this bold claim, it is critical that they use good data for the autism rates. By “good” I mean that they need data that they can accurately compare to the CDC reported prevalence of 1 in 150. That data was taken in 2002 on 8 year old children. I.e. kids born in 1994. Since reported prevalence numbers are going up with time, it would be very misleading if they were to use, say, prevalence numbers from the early 1990’s, wouldn’t it?

Any prevalence that they use would have to use prevalence numbers from about the same time, on kids of about the same age.

Here’s their table comparing the autism rates.

gr_table3

Let’s take a look at the studies they cited for their numbers, shall we?

Iceland: Prevalence of Autism in Iceland. This 2001 study uses kids from birth years 1984-1993. I.e. most (if not all) of the kids are from the time before the big upsurge in autism diagnoses. Hardly a good comparison to the 2002 CDC study, eh?

For Sweden, they use a paper called, “Is autism more common now than 10 years ago?” from The British Journal of Psychiatry. Published in… 1991. That’s pre DSM-IV. Amongst other problems, they won’t be including the other PDD’s in the autism spectrum, like the CDC study does. Besises, the kids from the CDC study weren’t even born yet, it was so old! Is there any wonder that the Swedish study shows a lower prevalence?

For Japan, they use a paper titled Cumulative incidence and prevalence of childhood autism in children in Japan. The study uses data from 1994 on kids who were born in 1988.

Are you starting to see the pattern here? Time after time, GR is comparing US 2002 prevalence data to much older data from other countries. Let’s go on:

For Norway, they use the paper Autism and related disorders: epidemiological findings in a Norwegian study using ICD-10 diagnostic criteria. The paper was published in 1998 on children 3-14 years of age. Simple math suggests they had kids with birth years going back to at least 1984 in that study. Hardly a good comparison to kids born in 1994.

For Finland, they use Autism in Northern Finland. Here is an updated version from 2005. The study uses data from 1996-97, on kids up to 18 years old. I.e. they are using kids that were born as early as 1979. Also, they are using data on patients from hospital records who used “communal health services”. Sounds a lot like “inpatient”–one of the critiques that GR uses against studies from Denmark. Also, the Finland study didn’t include Aspeger syndrome, as that was a new diagnosis at the time. Hardly a good comparison to the CDC study.

For France, they use Autism and associated medical disorders in a French epidemiological survey. This uses “French children born between 1976 and 1985”.

For Israel, they use Autism in the Haifa area–an epidemiological perspective. This paper looks only at autistic disorder (no PDD-NOS, no Aspergers, no Rett’s no Childhood Degerative Disorder). Right off the bat that reduces the prevalence and makes it impossible to compare the the CDC 2002 study. The Israell study also is, you guessed it, based on kids older than the CDC study: children born between 1989 and 1993.

Last, Denmark. If you’ve been following the thimerosal debate, you know this is going to be ironic. They use Madsen’s paper, Thimerosal and the Occurrence of Autism: Negative Ecological Evidence From Danish Population-Based Data. Generation Rescue refers to this study (incorrectly, I might add) as “This one goes beyond useless”. I guess “useless” is only when it is used to refute the thimerosal hypothesis? Come on, GR, this level of hypocrisy is just painful.

Missing Studies

There are some very well known studies that Generation Rescue somehow forgot to include in their “study”. Could this be due to the fact that they are very good counterexamples to the vaccine-hypothesis ? Let’s look at some and see, shall we?

United Kingdom: Pervasive Developmental Disorders in Preschool Children: Confirmation of High Prevalence ( study performed in 2002 with a prevalence of 1 in 170), and Pervasive developmental disorders in preschool children (study performed in 1998/9 with a prevalence of 1 in 160).

Canada: Pervasive Developmental Disorders in Montreal, Quebec, Canada: Prevalence and Links With Immunizations (birth years 1987 to 1998. Prevalence 1 in 154).

Wow, the United Kingdom and Canada have prevalence numbers comparable to those in the US!

So, let’s complete the comparison, shall we? What is the vaccine schedule like for the UK and Canada? Using the Generation Rescue “study” we get 20 vaccines for Canada and 21 for the UK.

Wow, that’s way less than the US (with 36), and they have the same autism prevalence as the US? How could that be? Is it, perhaps, that the autism is NOT related to the number of vaccines in a given country’s schedule?

Anyone doubt why GR left the UK and Canada off their table of Autism Prevalences Around the Globe? No, I am not giving them a pass that this could be an honest mistake.

To quote Generation Rescue’s top funny guy (Jim Carrey), “How stupid do you think we are?”

Generation Rescue: an autism research organization?

1 May

Generation Rescue has been trying to rebrand itself as a “research” based organization over the past year. This is a tough sell given their track record of promiting junk as science. Even if they didn’t keep touting their phone survey it would be difficult to forget it. Rather than write the effort off as bad, they cherry picked the “results” which support their political and public relations agenda.

I was reminded of this while I was writing a review of the Science Advisory Board for the newly minted Autism Science Foundation. Why not do the same for Generation Rescue?

it is worth noting that it would have been impossible to review GR’s science advisory board a year ago. It didn’t exist from what I recall. I recall checking fairly recently, and the advisory board consisted of one person.

But, that was the past. GR is ramping up their Advisory Board. Below is the current Advisory Board for GR. I use the ISI Web of Knowledge database to check for papers with the Science Adviser as “author” and the topic as “autism”, just as I did for the Autism Science Foundation. I also did a few other checks, as you will see.

S. Jill James

I get 11 autism papers for Dr. James papers in the search. One of which was cited 84 times (which is very respectable), but most of which have been cited 1 or 0 times.

I found something interesting on her website. Under “Research Support” she lists, “CDC: Mechanisms of Oxidative Stress in Children.”

I find it amusing that the top science adviser to Generation Rescue is accepting funding from the CDC. Were she on the “other side” of the fence on the vaccine question, GR would certainly have claimed that accepting money from the CDC is a clear indication of bias and would call for “independent” research.

I guess you can be independent and still accept money from the CDC.

Dr. Richard Deth

Dr. Deth was recently discussed by Kev, by the way. He has two autism papers in the ISI database. One of which was cited 31 times.

Woody R. McGinnis, M.D.

I only get 3 papers from the ISI Web of Knowledge database for McGinnis WR and topic=autism. Apparently they aren’t listing his papers in the Journal of Biochemistry and Biotechnology which came out last year.

Jerry Kartzinel, M.D.

I get no hits for an ISI search on papers for Kartzinel as author and subject=autism. He is, of course, the co-author with Jenny McCarthy on her recent book. Not exactly research, though.

This is not a group of heavy hitters in autism research. As noted, Dr. James has a few papers which have been cited a number of times. But, given the nature of this group (and of Generation Rescue) the question has to be asked–is this a real advisory board or is it for show? In general, this is a pretty lightweight group in the autism world. When Jill James is your “heavy hitter” you aren’t going to impress many people who actively watch autism research.

Besides, when has GR ever really acted like they want “scientific advice”? Seriously–they seem to be an organization which thinks scientists exist to confirm the observations of parents.

Compare this Science Advisory Board to that of the Autism Science Foundation, which we recently discussed. GR, an organization that has been around for years, is just putting together their Advisory Board and, well, the effort is slow to get moving. ASF had a reasonable Advisory Board at their launch.

But, Generation Rescue isn’t an organization to let their glass house stop them from throwing stones. You can imagine that when an organization like the Autism Science Foundation comes out with a stance against the vaccine/autism hypothesis it would see some “heat”. True to form, but I admit later than I expected, Kim Stagliano put forth a mild attack. As attacks go, it’s actually sort of amusing. Ms. Stagliano uses as her theme an idea that the ASF is stuck in the past in their approach to research. I find this attack by Ms. Stagliano amusing given Generation Rescue’s approach to research. GR’s concepts of research are like a neaderthal man found in a glacier: they represent ideas frozen in time, and ideas whose evolutionary path led to nowhere. You know the ideas: MMR and thimerosal caused an autism epidemic.

I am left wondering why Generation Rescue doesn’t have Dr. Andrew Wakefield as a science adviser. Certainly if anyone typifies the antiquated stance on science that Generation Rescue holds, it is Andrew Wakefield. GR certainly shows great admiration for the man who fueled the MMR/autism scare in 1998. But, it is one thing to admire the man, it is another thing to add someone to your advisory board whose research is considered an embarrassment by the vast majority of the research community. Who knows, Perhaps Dr. Wakefield turned GR down?

If I may take another minute on Ms. Stagliano’s blog post. She calls in the spectre of the Tobacco companies. It seems to be a favorite contrivance for her and the entire Generation Rescue/Age of Autism crowd. Favorite and patently ridiculous. Here’s what she had to say.

If the American Lung Association had spun off a new group headed up by those with a strong allegiance to Philip Morris and called themselves, INCS (“It’s Not Cigs Stupid!”) would anyone take them seriously outside of those with a financial interest in cigarettes?

The tobacco gambit is a bad comparison to autism from the outset. Epidemiology showed clearly that tobacco causes cancer. The epidemiology on MMR and thimerosal has shown they didn’t cause an “epidemic” of autism.

What takes the tobacco gambit from bad to ridiculous is when, only a few paragraphs later, Ms. Stagilano cites Bernadine Healy. Dr. Healy accepted tobacco company money as part of an organization which denied the dangers of second hand tobacco smoke. One sure sign that Ms. Stagliano’s post is basically propaganda–she refers to Bernadine Healy as “one of the most trusted doctors in America”. Er. Yeah. I would love to poll the “man on the street” and see how many have even heard of Bernadine Healy. Plus, I guess someone can be accept tobacco company money and still be “trusted”? Wll, at least as long as they support the “vaccines might cause autism” concept, eh Ms. Stagliano?

I actually wish Generation Rescue well with their effort to build a Science Advisory Board. I would hope that they would (a) find real scientists and (b) take their advice.

It would be a new direction for Generation Rescue.

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

22 Apr

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

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

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

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

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

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

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

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

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

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

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

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

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

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

3) This would lead to even more wasted time.

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

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

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

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

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

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

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

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

Sorry, you don’t vote down science.

6) They are rude.

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

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

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