How to investigate the "autism epidemic."
- From: "montygram" <nazztrader@xxxxxxxxx>
- Date: 30 Oct 2005 14:04:21 -0800
Here's a journalist who has encountered some of the same problems I
have. He asks a simple question about doing an easy and inexpensive
study to determine whether "orthodox" notions, which have never been
established in a way that meets the standards of the scientific method,
contain some major problems. If one starts asking scientific
questions, the "experts" in charge realize, light will be cast on how
tenous their claims are. However, one thing they cannot do is change
basic information, mainly demographic data, much of which is available
on the internet now (for instance through the WHO site), as well as the
biochemical studies (the abstracts of which are mostly available, at
www.pubmed.com). And that is why I am attempting to explain how one
can use this evidence to make decisions that should add decades onto
your life (lived in great health!). Does anyone have detailed
information on "typical" Amish diets? It appears that they do not use
any of the refined and highly polyunsaturated oils that are in almost
everything in the "typical" American diet these days (even in "health
food stores" you find that canola, sunflower, safflower, etc., oils are
in many of the prepared foods they sell. Supposedly, there is very
little "heart disease" and cancer in these populations as well. They
don't need to take fish oil pills or eat salmon. "Though their diet
consists of meat, potatoes, gravy, cakes, and eggs, the Amish have
extremely low rates of heart disease and cancer."
http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/1074778113932_24?s_name=&no_ads=
The vaccinations may set off a chain of reactions, but I doubt that
this would be a problem if the childrens's bodies were not made into a
bubbling cauldron of biochemical activity by eating large amounts of
these oils, along with foods high in iron and other co-factors that are
common in the "typical" American diet.
The Age of Autism: The Amish Elephant
By DAN OLMSTED
A specter is haunting the medical and journalism establishments of the
United States: Where are the unvaccinated people with autism?
That is just about the only way to explain what now appears to be a
collective resistance to considering that question. And like all
unanswered questions, this raises another one: Why?
What is the problem with quickly and firmly establishing that the
autism rate is about the same everywhere and for everybody in the
United States, vaccinated or unvaccinated? Wouldn't that stop all the
scientifically illiterate chatter by parents who believe vaccinations
made their children autistic? Wouldn't it put to rest concerns that --
despite the removal of a mercury-containing preservative in most U.S.
vaccines -- hundreds of millions of children in the developing world
are possibly at risk if that preservative is in fact linked to autism?
Calling this issue The Amish Elephant reflects reporting earlier this
year in Age of Autism that the largely unvaccinated Amish may have a
relatively low rate of autism. That apparent dissimilarity is, in
effect, a proverbial elephant in the living room -- studiously ignored
by people who don't want to deal with it and don't believe they will
have to.
Here are a few cases in point.
Earlier this month the National Consumers League conference in
Washington held a session on communicating issues around vaccine
safety. I was on the panel and talked about the Amish and autism. In
the Q&A session that followed, the first question was for me.
"Is this a proper role for a journalist, or is this just a straw dog
set up there with a preliminary answer? It not only showed up where you
wrote it. It was all over the place. You did very, very well for UPI
(at which point I said, 'Thank you -- please tell my bosses that!') but
the question is, did you do very, very well for America?
"Is it appropriate for a journalist -- you weren't reporting, you were
investigating. And I just wonder if you think it's an appropriate role
for you to play."
My answer: "There's different roles for the press. That's certainly a
reasonable question. That is investigative reporting. This idea is
something that's already been discarded -- that there's any reason why
you would want to look in an unvaccinated population.
"One of my favorite comments about journalism is that it's the wild
card of American democracy. The First Amendment says we can do (in the
sense of reporting about) whatever we want. So one of our privileges is
to get an idea in our head and go look at it."
My questioner was not finished. "I wasn't questioning whether you have
a First Amendment right to do it. I think this is more of a question of
the ethics, of what value we are bringing to the debate."
My response: "That's probably not a good one for me to answer.
Obviously I thought it was ethical."
At that point a fellow panelist, Dr. Louis Cooper, former president of
the American Academy of Pediatrics and a staunch vaccine defender,
spoke up. "I would jump in and say I thought it was ethical and I think
it was useful," said Cooper, a courtly and unfailingly courteous
Manhattan pediatrician.
"As you've learned, it was annoying to many people. I wasn't annoyed by
it because I thought you kept the process and the debate and the
discussion going forward. And we have to do that for one another."
That did not end the discussion. A few minutes later a public-health
professor from -- where else? Harvard -- did her own version of
Jeopardy!, offering the correct "answer" in the form of a question.
"This question is for Dan. Did you mention the outbreak of polio that
happened in the Amish community in the Netherlands that caused
widespread problems there, and also the fact that there'd been some
context with respect to history in our country in trying to reach out
to the Amish to actually encourage them to try to benefit from some of
the vaccine technology to the extent that we could?
"So there's been a long history in this country of the CDC trying to
reach out to them to the extent that they could. Also with respect to
polio, I think what's really amazing is it's such a great story, this
is such an exciting time, in the sense that we are very close to global
eradication. What that means is we've gone from 1988 when we had
350,000 estimated paralytic polio cases in the world every year to
roughly a thousand. It's very exciting that in fact we don't have the
terror or the hysteria and all of the fear that surrounded disease.
"I just want to remind everyone that one thing that's very important in
the context of reporting these stories is making sure that people do
remember and also realize with infectious disease is these things can
come back, and until they are eradicated they can come back and
devastate us just as much as they did before, except now there are a
lot more people.
"There's some related news that people might find interesting. A
headline in the Washington Post today, 'Polio outbreak occurs among
Amish families.' So I thought people might be interested in that."
At that point the moderator, Dr. Roger Bernier of the Centers for
Disease Control, said time was getting short -- why was I not
surprised? -- and asked for the next "question."
One thing I've noticed is the more that people want to lecture instead
of learn, the more they speak in breathless run-on sentences that are
hard to stop, slow down or even diagram. They leave one with the
unspoken idea that dialogue -- opening the door to new information --
is somehow dangerous.
These exchanges reminded me of the response I got from Dr. Julie
Gerberding, the CDC director, when I asked her this summer, verbatim:
"Has the government ever looked at the autism rate in an unvaccinated
U.S. population, and if not, why not?"
Her answer, verbatim:
In this country, we have very high levels of vaccination as you
probably know, and I think this year we have record immunization levels
among all of our children, so to (select an unvaccinated group) that on
a population basis would be representative to look at incidence in that
population compared to the other population would be something that
could be done.
But as we're learning, just trying to look at autism in a community the
size of Atlanta, it's very, very difficult to get an effective
numerator and denominator to get a reliable diagnosis.
I think those kind of studies could be done and should be done. You'd
have to adjust for the strong genetic component that also
distinguishes, for example, people in Amish communities who may elect
not to be immunized (and) also have genetic connectivity that would
make them different from populations that are in other sectors of the
United States. So drawing some conclusions from them would be very
difficult.
I think with reference to the timing of all of this, good science does
take time, and it's part of one of the messages I feel like I've
learned from the feedback that we've gotten from parents groups this
summer (in) struggling with developing a more robust and a faster
research agenda, is let's speed this up. Let's look for the early
studies that could give us at least some hypotheses to test and
evaluate and get information flowing through the research pipeline as
quickly as we can.
So we are committed to doing that, and as I mentioned, in terms of just
measuring the frequency of autism in the population some pretty big
steps have been taken. We're careful not to jump ahead of our data, but
we think we will be able to provide more accurate information in the
next year or so than we've been able to do up to this point. And I know
that is our responsibility.
We've also benefited from some increased investments in these areas
that have allowed us to do this, and so we thank Congress and we thank
the administration for supporting those investments, not just at CDC
but also at NIH and FDA.
The latest response to my pesky persistence comes not from academia or
government but from my own profession. Last week the prestigious
Columbia Journalism Review published an article whose main thrust --
with which I concur -- was that a vigorous debate over a possible link
between vaccines and autism was being thwarted by the self-induced
timidity of the press.
Some reporters told the author, Daniel Schulman, that they have
basically given up on the story because the criticism -- some of it
from their own editors -- was so fierce, and the story was so
complicated.
Schulman described Age of Autism's efforts to come at the issue
"sideways," looking for possible clues to the cause of the disorder in
the natural history of autism. And he mentioned our reporting on the
Amish:
"Privately, two reporters told me that, while intriguing, Olmsted's
reporting on the Amish is misguided, since it may simply reflect
genetic differences among an isolated gene pool. ... Both reporters
believed that Olmsted has made up his mind on the question and is
reporting the facts that support his conclusions."
Ouch. Being slammed by one's peers is never enjoyable, although
reporters need to have thick skins and realize they dish this kind of
thing out every day. (And those anonymous sources really are annoying,
especially when I am happy to be quoted by name about everything.)
What's interesting about the reporters' "private" remarks is the degree
of presumed expertise they suggest -- that looking at the Amish is
misguided "since it may simply reflect genetic differences among an
isolated gene pool." Really? Where did these guys get their doctorate
in genetics, Harvard?
This assertion -- that the Amish gene pool could explain everything,
based on no data that I'm aware of -- is the kind of self-interested
speculation masquerading as expertise that has beset the
autism-vaccines discussion for far too long. The term I learned for it
long ago is "convenient reasoning," and it does not always have to be
conscious.
The Amish have all kinds of standard genetic mental and developmental
disorders -- from bipolar to retardation -- and a lot more genetic
issues to boot from this supposedly protective "isolated gene pool."
The doctors who actually know something about the Amish have never
suggested to me that genes have anything to do with a low rate of
autism. They seem perplexed.
In upcoming columns, we'll put that question to the right people --
geneticists -- and tell you what we find. It's called reporting.
This ongoing series on the roots and rise of autism welcomes reader
response. E-mail: dolmsted@xxxxxxx
Copyright 2005 by United Press International. All Rights Reserved.
Source:
http://www.sciencedaily.com/upi/index.php?feed=Science&article=UPI-1-20051030-10222300-bc-ageofautism.xml
.
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