Manufactured Medical Consent Versus Informed Consent
To the Autism Mom in the Waiting Room

Age of Autism Weekly Wrap: Mistakes, They’ve Made a Few

AofA Red Logo Ayumi YamadaBy Dan Olmsted

Every journalist who has been at it for a while (in my case, four decades or so) has a treasure trove of bone-headed mistakes they can recount.

-- A friend of mine at the paper back in Danville wrote up a short item about a drunk driver being arrested by a state trooper. What could possibly go wrong? Well, you could inadvertently switch the names of the state trooper and the drunk driver. ...

-- Filling in for the county government reporter, I ignored something called the “multiplier” and wrote that taxes were going up when, in fact, they went down for the first time in years. My editor said the subsequent story, which we artfully attributed to “new information,” was the first time the paper ran a (disguised) correction bigger than the original article.

-- OK, one more, told to me by an assistant city editor from Kansas, possibly apocryphal but too good to omit. A paper in his home state had two big front-page stories the same day – a dilapidated barn burned down, and the mayor’s wife died. You may sense where this is going: Under the barn photo the headline read, “Mayor’s Wife Dies at 70.” Under the mayor’s wife? “Old Eyesore Gone at Last.”

So, mistakes happen. It’s funny in retrospect, but not so much at the time. The trick for journalists is to learn how easy it is to get things wrong before we look like complete idiots when it really matters.

By that standard, Steve Silberman, John Donvan and Caren Zucker look like complete idiots to me. They make mistakes in their new books on autism (the former’s NeuroTribes and the latters’ In a Different Key) that suggest they don’t really know what they’re talking about. And they don’t know it in a way that shows the biased a-s-s-umptions they substitute for real reporting.

Several AOA contributors, in particular our indefatigable Anne Dachel, have pointed up the macro-mistake of both these books – the idea that autism has been around forever and basically needs TLC rather than a massive public health response. To my mind, a mistake this big requires getting a lot of little things wrong, little things that add up to a complete lack of mastery. “To compare great things to small,” as Milton put it, here are a few.

NeuroTribes, by Silberman, says that parents first raised concern about mercury in vaccines. No -- it was the government.

“After an outcry from organizations like (Barbara Loe) Fisher’s National Vaccine Information Center, the Centers for Disease Control in Atlanta and the American Academy of Pediatrics asked vaccine manufacturers to remove thimerosal from the their products. …”

No, no, no! The FDA was ordered by Congress to look at medicines that contained mercury, leading to the government announcement in 1999, leading to parents’ outcry.

You make this kind of mistake when you think the idea that mercury might be dangerous in vaccines is so absurd that the crazy anti-vaccine parents must have started it; when you think Fisher is a wild-eyed loon who can help you make whatever point you want.

Ditto In a Different Key. The authors report that in response to 9/11, Congress added the infamous “thimerosal rider” to the bill creating the Department of Homeland Security, sparing Eli Lilly from liability.

“The discovery of the rider caused a brief outcry,” they write. “Families were now obliged to pursue their cases through a process known as vaccine court.”

That was some “brief outcry”! Donovan and Zucker appear not to know it was repealed under massive public pressure, and not just from anti-vaccine nut jobs. Thus it had no effect on whether families were obliged to pursue their cases through vaccine court.

In a Different Key mangles the other foundational issue for vaccine safety concerns – Andy Wakefield’s study in 1998. According to Zucker and Donvan, the study reported that, “the measles virus was present in all 12 children.”

No! If you’re going to spend seven years on this, read the damn paper! I sent that to Andy, who commented: “Absolute garbage! The Lancet paper makes no reference to detection of measles virus. A later paper by Kawashima from Japan, on blinded samples of cases and controls, found measles genetic material in some autistic children. He published this result.”

But of course, since Andy is a fraud, he must have said that!

History is built of blocks called facts. Before you try to interpret the edifice they create, you need to make sure the foundation is solid.

One more: Silberman completely mangles a story about Leo Kanner, before he discovered autism. It's not worth untangling the whole thing here, but it totally confuses the way Kanner went about looking for a neurological form of syphilis in Native Americans. Silberman makes a cautionary tale out of his messed-up version, portraying Kanner as a glory hound intent on sniffing out a disorder to stamp his name on -- as he would subsequently do with autism, in Silberman's fevered version of things. 

I could go on and perhaps I will in a follow-up because there is much more here – Zucker and Donvan misspell my name, for cryin’ out loud – but let me just say again that, as a journalist, these kind of mistakes are red flags. How much, to compare great things to small, should we rely on the depth of their understanding of the autism-as-epidemic argument? How much should we care about Donvan and Zucker's column in the Washington Post Saturday doling out tips to presidential candidates and calling a vaccine link “scaremongering”?

“The autism world, like the world in general, needs less discord,” they write, spreading the kind of soothing caca that suits their mistaken, mistake-prone view of autism.

No! The autism world needs a loud and persistent revolution with as much unpleasantness as is required until eyesores like that are gone at last.

 --

Dan Olmsted is Editor of Age of Autism.

Comments

Birgit Calhoun

My boss once told me there is no law against making things up in journalism. The whole thing depends on honesty and integrity. But what's going on here is something that relates to burying the evidence of what really happened, and when the truth reappears, a book has to be written quickly to fictionalize the whole thing as fast as possible. Who pays them for the effort? That's anyone's guess. But some pharmaceutical corporations might do that.

Angus Files

Thanks to the ones who remain silent pharma thanks them. Because without this silence Pharma would not be able to do what it does.

MMR RIP

Margaret

Please keep the term "hack" in mind when reading Silberman, Donvan, and Zucker. In the old days, hacks took liberties with the facts to boost newspaper circulation or to make a point of some kind that would be useful to someone somewhere with an agenda. Real reporting means a willingness to look at some very unpleasant truths. Real journalists dig for the truth and are often greatly feared, which is why they don't always have a long life expectancy. No one is afraid of hacks. They're easily bribed, and they're too stupid and lazy to dig for facts.

Ted

Then there's the article in The New Yorker about the history of autism that claims Wakefield et al claimed it was the thimerosal in the MMR that caused autism. Arrgh!

cmo

Thanks Anne for the information below.

The children would have to be old enough before a parent can notice a “regression” which is not too difficult at 18 months. How does a parent see “a regression” at 2-6 months ? These children are not allowed to get old enough to show a regression.

The real regression rate is probably nearly 100 % rather than the 30% that the AAP might agree to.... and of course it is nearly impossible to find an unvaccinated “sudden regression” case of Autism.

I would like to see a nursing home with say 50 residents, replaced for a month with 50 Autistic children... with the same staff to take care of them. Interviews of the staff would be quite interesting after 30 days.

Tim Lundeen

When someone claims that "autism has always been here, we just diagnose it better", you can refer them to the Social Security's statistics for disabilities::

Age Group Autistics One-year age groups
5–12 92,648 11,581
13–17 38,365 7,673
18–21 39,807 9,952
22–25 32,747 8,187
26–29 15,446 3,862
30–39 9,385 939
40–49 1,765 177
50–59 1,013 101
60–64 219 44

In other words, the number of disabled autistic people per year has increased dramatically (by more than 250 times) in the last 60 years. Note that there is a clear incentive for older disabled people to get diagnosed, so that they can receive disability income. If there were really larger numbers of disabled autistic adults, we would see that here.

(The third column is the total number of disabled autistics in that age group divided by the number of years spanned by the age group, so that you can compare groups with different age spans.)

Also note that disabled autistics have the fastest growth of any category, increasing by THREE TIMES from 2006 to 2014. The next highest was developmental disorders, increasing by 1.67 times in that period. Overall disabilities show that our overall health is deteriorating rapidly, with an 1.18 times overall increase in that period, much faster than the 1.03 increase in population.

Source: https://www.ssa.gov/policy/docs/statcomps/ssi_asr/2014/sect06.html

(Thanks to Ed Yazbak for the link to this resource.)

Denise Anderstrom Douglass

Thank you for this article, Dan. They really are counting on the thing to just go away, but it's not going to!

Patience (Eileen Nicole) Simon

Anne, thank you for continuing to ask where all the elderly parents like me are??? After my son was admitted to the children's unit at the Massachusetts Mental Health Center, a weekday inpatient unit, I learned of a small Boston-area organization, AMIC (Association for Mentally Ill Children). Then NSAC, National Society for Autistic Children was founded, which I believe is now the Autism Society of America.

Autism was very rare back in the 1960s, 70s, and 80s. I don't need newcomers like Silberman, Donvan, or Zucker to set me straight. But I am just a parent, and I can tell you that deliberate stigmatization of families was as rampant back in the 1960s (and before I am sure) as it is now.

The medical establishment is evil, and always has been when questions of safety come up. The association of autism with difficult birth could not be clearer, and predates the increase in childhood vaccines. That the brainstem auditory pathway is easily damaged by oxygen insufficiency (and toxic substances like alcohol and mercury) has been in the medical literature for more than 50 years, and re-confirmed many times over in research using Sokoloff's deoxyglucose method.

Greg

Listening to the exciting news that scientists discovered gravitational waves, proving Einstein right yet again, it's truly amazing what can be achieved with the thirst for knowledge and truth. Yet, with autism research, one wonders how researchers bear the great dissonance, when they must check such desires at the door.

Anne McElroy Dachel

Dan, thanks for those examples! A little humor to start my morning.

I seriously think Silberman, Donvan and Zucker have one purpose: They're programmed to MAKE THE EPIDEMIC GO AWAY. (And at the same time, talk about the vaccine controversy in the PAST TENSE, which is exactly what they're doing! In this recent Wash Post story, the link between vaccines and autism was neatly sidelined.


https://www.washingtonpost.com/opinions/here-is-the-conversation-candidates-should-be-having-about-autism/2016/02/11/19d208b0-cb49-11e5-a7b2-5a2f824b02c9_story.html

"In years past, the clash between those who believed vaccines caused autism and those who didn’t reached epic proportions.")

They foster the totally unsubstantiated claim that autism affects adults just like it does children--the only difference being that we've ignored all the ASD adults out there. (I seriously want to know how that could possibly be true given the fact that I can pick out a child with classic autism across a crowded mall.)

They tell us there are 3 million Americans with autism, which includes applying the rate across the population.

And how does their theory that we just used to hide them away in institutions figure into this? These institutions don't exist today, right? SO WHERE ARE THE ADULTS RIGHT NOW?

40, 60 and 80 year olds with autism are supposed to be undiagnosed/misdiagnosed and floundering SOMEWHERE.

As professional journalists for ABC, Donvan and Zucker have an obligation to LOOK FOR THEM. (And I don't want to hear about the quirky professor or the accountant who has OCD.)


Experts tell us that 25 percent of children with autism are non-verbal. Furthermore, 30 percent of them experienced a loss of learned skills and regression. Another 30 percent have seizure disorder. And 50 percent of children with autism are prone to wandering. Finally a child with ASD is 3.5 times MORE LIKELY to have GI disease.

I want to see large numbers of adults just like this.

I'm talking about ones who don't talk, who rock, spin and flap their hands. I want to see the ones who are prone to wandering and beating their heads. AND...I want to see middle aged and elderly adults whose medical history includes regression as toddlers. AND...I want to see the autistic adult with seizure disorder and GI problems.

Donvan and Zucker like to point out that the adults are coming; there are 500,000 kids with ASD who will be aging out of high school with no place to go. How is that possible, unless THEY ARE VICTIMS OF AN EPIDEMIC OF RECENT ORIGIN? IF, as these two claim, the adults are already out there, there would have to be services and support ALREADY SET UP.

This is such a no brainer, it's hardly worth mentioning--ONLY NO ONE IN THE PRESS EVER DOES.

Incredibly, last month on Good Morning America, hosted by the pharma-friendly/controversy denier, George Stephanopoulos, Donvan responded to a question by saying, "It shouldn't matter if there's an epidemic..."

http://abcnews.go.com/GMA/video/book-explores-autism-case-today-36355836

Actually, it has to because we're going to have to pay for the services for the lifetime of this disabled generation. Doesn't anyone ever think about that? It is an Alice in Wonderland-type fantasy to believe that autistic adults are all living at home, being cared for aging mothers and fathers. (How many autistic adults in their 60s are tucked into bed every night by their 90 year old parents?)

These are the critical questions that all three of these authors should be made to answer.

Anne Dachel, Media

Jeannette Bishop

“After an outcry from organizations like (Barbara Loe) Fisher’s National Vaccine Information Center, the Centers for Disease Control in Atlanta and the American Academy of Pediatrics asked vaccine manufacturers to remove thimerosal from the their products. …”

A version of Offit's the-only-reason-they-removed-the-mercury-was-to-reassure-parents?...

which is contradicted by the fact that mercury stays in the schedule, and that parents are not reassured (otherwise why would we "need" mandates?), and we have no evidence with the wave of mandates instead of reforms in the schedule that the CDC, AAP (pharma really) etc are swayed in any manner by parental concerns, except to force their will...so maybe it's best to not get too picky about details?

And I've seen the NCVIA confused with the Eli Lilly rider before...not sure why...except it maybe doesn't seem intuitive that we would have two instances of legislating liability protection (and again it's possibly particularly "unproductive" for the promotion of vaccination to spell out and clarify these instances)... and the post-outcry over-turn of ? (whatever) meant ??? ... Do the writer's of In a Different Key believe that right to redress remains intact for those they advocate for?

I don't understand the mindset that we can continue to injure at the current rate, if we're just a little nicer in the way we don't acknowledge we are injuring, because the short-term cost of realizing how fallible we are (or maybe it's how fallible our "healthcare providers" are?, or how corrupt our "leadership" just might be, is WAY TOO MUCH TO BEAR nevermind the potential exchange of reducing and preventing life-long and life-shortening chronic illness (for maybe about as many as about 50% of the population, maybe improved viability for all the population)...at least I guess that's the most sense I can make of these types of "efforts" without falling into cynicism...

kapoore

How do people get away with just making things up?

Gary Ogden

Dan: Would that UPI article get published today? It would be incendiary in the current climate created by the astroturfers, the WHO, DHHS, Gates, and all the rest of the criminal drug pushers. Thank you so much for this post. The state of journalism has become so dreadful I don't read any of it, other than Sharyl Attkisson, Ben Swann, and Glenn Greenwald. Cancelled the local paper (that I had read fifty years) last year after they continued to print lies about Dr. Wakefield (although they did publish my letters setting the record straight) in their campaign for SB 277. I find AoA, NVIC, and a few blogs to be the only sources of reliable information. What a hell of a state we've come to. This is why Trump and Bernie have done so well. Trust in public institutions is gone. By the way, I've been wondering for some time, are you any relation to Frederick Law Olmsted, the great landscape architect and journalist?

Dan Olmsted

cmo -- i edited that article! mark benjamin's interest in this topic is what got me into it...

Carol

I think the authors are on a better legal footing if they can plead ignorance rather than ignore-ance. Perhaps that entered into their thinking.

cmo

Thanks for all you do Dan,

The UPI item below goes back a few years but as "nothing changes very fast" at the CDC it is still current.

I send it out to a lot of new parents... and parents to be.

http://www.upi.com/Odd_News/2003/07/21/UPI-Investigates-The-vaccine-conflict/44221058841736/

Of course the current media hype is the "yup it is Zika" causing all the problems in Brazil... they figure out some things so fast...

and then it is right to next big pile of money to solve the problem.


Linda1

Journalists in 2016 are messengers delivering the current official version of reality. Accuracy has nothing to do with their mission. Like carrier pigeons, they may have no idea of how they're being used.

Dan Olmsted

the description of why secondary sources might be more appealing is spot on!

Cait from Canada

I just want to add that Dildine's remarks did not refer to Donvan and Zucker. His article is about the origins of the AIDS epidemic and a possible link to testing of a polio vaccine in Africa.

The quote is from his discussion of a misleading Wikipedia entry. As he puts it: "Wikipedia, valuable and useful as it is, is not always a reliable source for information on controversial subjects as the public editing can result in manipulation of content."

Cait from Canada

I am interested in your comment about the importance of primary sources.

Wakefield et al.’s 1998 case study is a short paper readily available online (despite its retraction). So why would Donvan and Zucker reference Deer’s writing about the paper instead?

A recent article in Green Med Info by Robert Dildine casts some light on their decision. "Why cite secondary sources when the primary source is equally available? Perhaps it is because the secondary sources make claims of finality that are not found in the original paper.... Citation to the actual paper would not be useful if the purpose is to suppress the debate, because the paper is balanced and nuanced."

Referencing primary materials is a desirable strategy ONLY IF one is seeking the truth.

Dan Olmsted

Carol, thanks for the question. first, as i tried to suggest, mistakes do happen, and there are a few things i would fix in a new edition of Age of Autism. It's the frequency and the materiality of the mistakes in these books, and their tendency to buttress the authors' biases, that bother me.

I would say there are two ways mark and i tried to get things right in our book

-- using primary materials. there is a maxim in journalism to rely as much as possible on primary sources. so i can assure you i've read andy's paper, kanner's, and aspergers many times (MANY times!). to say that andy reported all the kids had measles virus suggests an unfamiliarity not only with the debate surrounding the paper, but with the paper itself.

-- footnotes. there are plenty of footnotes in these books, but based on a quick look at some of them, i don't believe they really backstop key assertions. to continue with the same example, the claim that andy's paper reported that all 12 children tested positive for measles virus is attributed in a footnote to brian deer's documentary, as part of a discussion of andy supposedly ignoring pathology findings. to my mind it should be attributed to the wakefield paper itself, with a direct quote that confirms it. that's how you catch yourself in your own mistakes -- if you even care about such things..(brian deer's work, as i've tried to show, is false and misleading throughout, so one relies on him at one's peril.)

as i said, since these authors view andy as a fraud -- "the greatest fraud," as a chapter heading says -- they are inclined to believe whatever is said about him.

Carol

Dan, would you briefly describe how your books are fact-checked?

John Stone

Dan

Well written.

Unwilling to discuss their ideas and their evidence. I wonder why ever not? Actually we could have a civilised and well mannered discussion if they would allow it - no one needs to be threatened by the truth or by a measured exchange of opinions. Yes, they should be saying, this is such an important matter that every detail of the research has to be right. But that is not what is afoot. Nothing must be allowed to challenge the public myth-making (claims which are either wrong or cannot possibly be substantiated) which is of course a defence of policy.

Even Hillary is now saying apparently that she is worried about the pharma (a little late) but it is not only corrupt practices it is the perversion of policy, the domination of public debate by money and professional intimidation: the exclusion and marginalisation of informed opinion which goes hand in glove with bad medicine and medical tyranny.

As to Silberman, Donvan and Zucker part of the big message is they are really nice big hearted people. Well even if true it is not relevant. It is just another way to usurp real, intelligent discussion. Competitive sensibility (like in Jane Austen novel), people insisting on their refined motives and feelings, while behaving in oppressive an unpleasant ways. Actually, they are stinkers, God help us.

Patience (Eileen Nicole) Simon

Where is any discussion by neurologists? At best journalists may report on recent autism research. Most AoA parents realize autism research has become ridiculous.

Seizure disorder, auditory system abnormalities, repetitive movement disorder, and diminished environmental awareness should be the priorities. Face recognition, eye tracking, and gene loci related to autism traits in parents are examples of "research" without meaningful underlying hypotheses.

Dan, thank you, and please keep up the heat. I submitted 30+ comments for the last IACC meeting, and asked for discussion by members of the committee who are graduates of medical schools. A summary of topics submitted was all the discussion offered. I will continue to have more to say...

Bob Moffit

“The autism world, like the world in general, needs less discord,” they write"

Of course .. any "stakeholder" desperately wants "less discord" .. far better for the "wide-ranging stakeholders" if the peons continue doing exactly what they require the peons do.

AND THE BAND PLAYS ON .. AND .. ON

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