Thursday, June 14, 2007

Vaccines on trial: NPR

Vaccines on trial
Talk of the Nation, June 14, 2007 · For years, many parents have argued that childhood autism is caused by vaccinations — yet studies have been unable to confirm a link between the two. A trial at a federal vaccine court will hear cases from parents who claim that routine childhood vaccines caused their children to become autistic.

[with guests]

Gardiner Harris, science reporter, The New York Times

David Amaral, professor of medical psychiatry, University of California Davis, M.I.N.D Institute

Dr. Peter Hotez, president, Sabin Vaccine Institute
Here are some notes (not everything is verbatim) from what was discussed, as transcribed hastily by Autism Diva.

Gardiner Harris: The special masters are accustomed to vaccine claims. This particular autism claim is overwhelming the system. There are 4800 families.

Neil Conan: How come it's taken so long to get to court?

Gardiner Harris: ... the claimants themselves have delayed the proceeding for many years in hopes of coming up with evidence. They've also tried to distance themselves from the 2004 IOM report that obviously concluded that there's no connection between vaccinations and autism....

Neal Conan: And as the trial got underway ... are there lawyers for each set of parents?

Harris: There are three initial cases. Looking at a relatively narrow part on these autism arguments one that has less to do with thimerosal and more to do with the ... MMR.

Conan: The special masters will decide it?

Harris: It's a little bizarre that way, because the lawyers for the claimants -- so normally when you go into a court where a judge is making the decision .... there's a podium right in front of the judges and the lawyers stand in front of the judges... in this case the claimants' attorney turned the podium around and spoke to the audience instead of to the special masters who will actually make the decision and I think it tells a lot about this case.

It's not clear that it's all about money or even about winning for the claimants. I think ... they are talking to a different audience.

There has been a lot of effort on capitol hill to help out the claimants. I think this is... part of a larger process that the claimants are looking for ... some sort of recognition. Not only that their ideas of problems with vaccines being right. More than that when you talk to them they just want to tell you how hard their lives are.

The politics of this thing, to me, this is a very curious situation, And I have never seen this on a widespread basis in any other science story I've covered. There's an extraordinary community really, of parents who believe something...fervently that nearly all available science says is not true. This may be because... first if they don't believe that vaccines did this, then where do they go?

This group of alleged experts on vaccines, then offer them hope that they can cure it. I think this is part of the persistence in believing in this.

Neal Conan introduced Dr. David Amaral of the UC Davis MIND Institute and then they took a call from a woman who got her public health and autism etiology training from reading the single-blinded-Dan-Olmsted "research" that seems to mostly exist as blog posts on a couple of Internet sites as opposed to their being real articles that are actually picked up by newspapers and printed. Olmted's "Age of Autism" articles are hysterically far from being anything like real science, filled as they are with patent untruths, like the Amish don't vaccinate and they don't have autism. Both which are false. But the caller stated with absolute certainty that the Amish did not vaccinate and the Amish have no autism.

Later, Peter Hotez said in regard to the so-called epidemic: It's not a true increase in autism, but a increase in diagnosis. In the past many of these kids would not have been considered autistic. There is no epidemic of autism. I think that's very important.

Amaral: I would agree that changing the criteria can explain some of the increase, that nonetheless there has been an real increase. ... Many of the parents I work with say, "Where are all the 50 year olds with autism?"
...
Dealing directly with thimerosal the case doesn't look very strong. It's estimated that around the end of 2002, most of the vaccines containing thimerosal were off the shelf. had 886 new children, the second highest quarter, the first highest quarter was in 2006. Those kids were for the most part were not receiving thimerosal, but the rates are still increasing.



A dad called in and accused NPR of being part of the (ultra sneaky vast international) conspiracy (to thimerosal manufacturers shield), essentially, because NPR takes money from Johnson & Johnson, and then he kept interrupting the host with stuff including a suggestion that they should have invited David Kirby.

It was interesting to see a couple of the parents who belong to this subculture of parents who are autism-is-caused-by-vaccines believers, referred to by Gardiner Harris at the beginning of the show, calling in to keep the conspiracy talk part of the public record.

It was nice to see David Amaral adding fuel to the fire by repeating the inane question about supposed missing 50 year olds "with autism" that he says he's heard from "parents" he "works with" (which may be a code-phrase for "the founding fathers" he works with, since Amaral works with monkeys, not with children and so is not so likely to be "working with" parents of the young study subjects seen at the MIND).


Coincidently, Autism Diva was at the MIND Institute last evening to hear Dr. Tony Charman speak on the epidemiological study that he and some others did that counted autism spectrum 10 and 11 year olds in the South Thames region (near London) in the U.K.

Dr. Amaral was there in the audience for the first talk, but didn't stay around for the second one. Had he done so he might have been able to answer that question coming from "the parents" he "works with". As Charman made it clear that there's no evidence for any large increase in real cases of autism, and this from the man who found about 1% of the kids in the South Thames had an ASD (the majority of whom had atypical autism or PDD,nos). Many of the "classic autistic" kids had been labeled as mentally retarded by their schools and were receiving services with that label. Some of the kids had co-occuring diagnoses like cerebral palsy and Down syndrome.

One of the most interesting things Dr. Charman said in his first talk was that they looked at this large group of kids all of whom had medical records that were accessed by the team. They started to look for patterns, commonalities that might enable them to find a way to subtype autism (a big goal for researchers is to find these elusive autism subtypes (or endophenotypes).
They divided the kids between ones who had regressed (as marked by a loss of language) and those who did not. When looking at these kids, who are now about 15 years old, they found no significant differences between the regressed and not regressed kids as far as IQ or ability to get along in day to day life in a adaptive way (take a bus, go shopping, put on their shoes, make a sandwich ....), no difference in their ability to use language and no difference in the amount of seizure disorders between the groups or in the amount of gastrointestinal problems.

Considering all the autistic kids together, they had fewer seizures than the researchers would have expected, and more gastro-intestinal problems, presumably than typical kids their age, though maybe the problems were all in their early childhoods. Dr. Charman didn't elaborate on what these problems were, or how severe or mild they were.

The video tape should be available on the iTunes, eventually, and on the MIND Institute's website, also.

The coolest thing about that is that both Dr. Amaral and "the parents" he "works with" will be able to view Dr. Charman's second talk and learn "where all the fifty year olds with autism" are!! How cool is that??


Autism Diva

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12 Comments:

Blogger Ian said...

Great post. Thank you.

12:04 AM  
Blogger Autism Diva said...

You're welcome. :-)

2:20 AM  
Blogger Bartholomew Cubbins said...

"A dad called in and accused NPR of being part of the (ultra sneaky vast international) conspiracy (to thimerosal manufacturers shield), essentially, because NPR takes money from Johnson & Johnson, and then he kept interrupting the host with stuff including a suggestion that they should have invited David Kirby."

Fantastic. More people need to be exposed to lunatics like this to gain an appreciation for the backbone of the antivax community.

It is cool that Amaral et al have a chance to learn something "new", but that doesn't mean that they want to or will.

4:51 AM  
Blogger BigTimeSynesthete said...

Too bad these parents who think autism is caused by mercury will persist on. We'll never be able to change them. But we can prevent future parents from believing the mercury theory. keep posting, Autism Diva!

8:06 AM  
Blogger Sam said...

I heard the NPR interview as well. It was...interesting. Particularly the part where one father essentially called NPR a pharma-shill. I had to comment on that bit on my own blog.

10:59 AM  
Blogger Steve D said...

Excellent summary as always, AD. Keep up the good work (and it is hard work).

11:43 AM  
Blogger Autism Diva said...

Thank you, bigtimesynesthete, same and steve d.

Yes, it's a lot of work, steve d.

Autism Diva is ready for a break.

Kinsbourne is testifying today. A few minutes ago it was shown that he was the third of the top three winners in the autism/mmr legal aide payments for expert witnesses game...
As you can see here:
here .

Autism Diva is surprised that Kinsbourne is an elderly man who hasn't seen any children in as a clinician in 20 years and that he has something that sounds much like a German accent.

So Kinsbourne may be quite invested in repeating the idea that Wakefield actually found measles. Unigenetics is O'Leary's lab that was found to have serious problems, and it seems that anyone using thte techniques and materials that O'Leary did would find "measles" everywhere, even where they are not.

On Monday the defense witnesses are due, with Eric Fombonne being the first in line. Fombonne will be enjoyable to listen to, if only because he says OAT-eezm and "eh-PID-emic" and everything else so pretty and French-like. :-) And also because he's so professional and probably doesn't have bizarre misstatements about his credentials on his CV.

12:24 PM  
Blogger Autism Diva said...

Apologies to any readers whose questions on older blog entries are not getting responses. Autism Diva doesn't have time right now to go back and revisit questions that have been answered many times, although she would do that if she wasn't so busy following the omnibus case.

Full Disclosure: Autism Diva doesn't get paid for anything remotely related to blogging and isn't compensated in some way other than the obvious (people have asked if Autism Diva gets paid by Big Pharma in creative ways like with expensive vacations, which is why Autism Diva is trying to delineate all the ways she isn't getting paid....)

12:27 PM  
Blogger Matt said...

Evidently, Autism Diva was up at 2am doing blogging...Autism Diva needs a vacation.

I heard the NPR thing. The guy who was trying to push Kirby (and other) names onto the show was not clear enough, I think, for most to understand. If you didn't know Kirby before, you probably didn't really understand him.

The NYT guy was pretty direct about the lack of evidence for mercury/vaccines-->autism. No attempt at softening the blow.

Neal Conan was not apologetic about not having the other side represented. He made it clear that the evidence is clear and the consensus of the experts is clear.

The "blog of the nation" shows that some parents did not take this well, as you can imagine.


Matt

1:51 PM  
Blogger Rosie said...

And in late 2000/early 2001 when I first heard about the possible Mercury-Autism link on NPR and it was treated credibly - NPR was a Johnson and Johson shill then, as well? People have convenient memories.

3:19 PM  
Blogger UnitarianPatriot said...

Can some of you who are well versed in this issue help me? I have no ax to grind or deep background on this issue. But after hearing most of the NPR broadcast I still had some questions.

1) If thimerosal can't cause autism or other neurological problems, why was it removed from vaccines? What I can find about thimerosal and especially about mercury says it can cause neurological problems, sometimes severe.

2) Parents by the thousands are saying that their kids' autism appears to have been caused or at least triggered by vaccines -- the direct injection of multiple biological agents directly into their infants' or toddlers' bloodstreams. Why is that so implausible? All the people on NPR said, "There's no evidence to support that." But what is the parents' observation and their children's experience if not evidence? I'm sorry, but if one study or one million studies discount what these people have observed, how "scientific" are these studies? How does science explain what happened to these people?

3) The closest the NPR program got to an explanation was that these people were just flat wrong about their own kids -- that there WERE signs of autism before those vaccines were given. I find that hard to believe, but let's say that's true. If that's the case, and it's also possible that something in those vaccines makes the autism worse, why in God's name isn't every kid who is about to be vaccinated diligently screened for those signs?

Help me here, folks. I think the truth lies somewhere in between the conspiracy theorists and the "scientific researchers" who blow off the reality of thousands of kids who radically change after they get these shots.

4) As for these studies, how do they get a control group? Are there really huge populations of affluent but unvaccinated kids in the modern world to use as a control group?

Thanks for any answers those of you who are really in the know about this can give me. It's an interesting and vital topic.

11:35 PM  
Blogger Autism Diva said...

unitarian patriot,

There are more than 600 posts to Autism Diva blog. If you start somewhere and read about half of them you'll get all of your questions answered. It might help to use the search function and look for certain words, like "thimerosal".

But if you stick around until tomorrow, and check the transcript and audio that the DoJ is posting (here)of the Omnibus hearing proceedings, you'll hear a good explanation of how it is that parents miss autism that was there plain as day before a vaccine, and yet claim that their child was absolutely normal before the vaccine.

Parents are not as perfect observers and we tend to think they are. Not that their observations are always, wrong, it's just that they can be very, very off.

In this case video shows that Michelle Cedillo was quite autistic and developmentally delayed during the period her parents claim she was absolutely normal. Michelle also had an increase in brain growth that is a hallmark of many autistic kids and it came on long before her MMR vaccine, starting at 2 months of age.

12:37 AM  

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