How a zealot’s word led us astray on autism

[Javaman]

Opinion: Tiny, flawed vaccine study a case study in biased medicine

http://www.msnbc.msn.com/id/35218819/ns/health-health_care/

A dozen years ago, a British physician named Dr. Andrew Wakefield published a paper in the prestigious medical journal The Lancet that did immeasurable harm to children.

Wakefield, who back in 1998 was working at London’s Royal Free Hospital, claimed in the article that the vaccination of 12 children with measles/mumps/rubella (MMR) vaccine had caused a reaction in their bowels that caused autism.

>snip<

As it turns out, for the study Wakefield took blood samples from children at his son's birthday party, paying them 5 pounds each.

>snip<

Wakefield’s study was both tiny and flawed. Nearly all of his 13 other co-authors eventually bailed out on the article. Still, the press could not resist from spreading the scary news over and over again, even though no one could get the same findings as Wakefield did. And Wakefield himself, supported by a fanatical anti-vaccine lobby that to this day cannot let go of the vaccine-autism connection, continued to spread fear of vaccines right up to the time of his disciplinary hearing.

More at link

[SidDithers]

1. But Jenny McCarthy says her son got teh autism from vaccines...

and she's moderately famous for her big boobs and blonde hair!

Thanks for posting. Hopefully, now that Wakefield has been finally, totally discredited, this vaccine-autism nonsense will go away.

Sid

[Swede]

2. I hope so.

But it seems anti vaxxers are still clutching this hoax.

[SidDithers]

5. And they've got a willing media vehicle at HuffPo...

with the exposure they're giving to David Kirby.

Sid

[trotsky]

6. Speaking of the devil,

he already put up a piece to step awaaaaaaaaay from Wakefield but yet claiming he was right anyway. And of course shifting the goalposts YET AGAIN.

[liberal_at_heart]

7. It will not go away until we know what causes autism

I am a mother of a son who has autism and although he had all his vaccines as a baby I am concerned about getting him more vaccines as he gets older. Scientists know that along with a genetic link there are environmental links they just don't know what they are and there are more vaccines out there than just the MMR vaccines not to mention how many they give in such a short time. Some scientists have come out stating there could be underlying medical issues that could be aggrevated by vaccines and we need to know what those underlying medical issues are and if our children have those underlying medical issues. Unless you have a child with autism you have no idea what it is like so I would be careful about making judgments about people who are only trying to do the best for their children. I will do whatever I can to protect my child and I don't care what anybody says about me. You can call me an anti-vaccine nut. You can call me stupid. I don't really care. My number one priortiy is my child. And as far as those out there that say that parents who don't vaccinate their children don't care about he population at large I would say what about the public who doesn't seem to care about these autistic children?

[SidDithers]

10. I wouldn't call you a stupid, anti-vaccine nut...

unless you're recommending that people not vaccinate their children.

Sid

[Warpy]

11. It's nothing you did or didn't do. It's congenital

He was born with it. He was always going to get it.

They know a few genetic markers. They have found differences in the umbilical cord. Autism isn't the only congenital illness that appears in late infancy and early childhood. Early testing is in the pipeline but not available yet. Parents will have warning in the future.

Don't waste time being guilty. This isn't your fault. Your job isn't pointing fingers or assessing blame. Your job is to enjoy your child and help him to become as high functioning as possible.

(And yes, I do know what autistic kids are like)

[lumberjack_jeff]

12. No, there is (are) envronmental trigger(s)

http://www.ucdmc.ucdavis.edu/welcome/features/20090218_autism_environment/index.html

Clearly there's a genetic correlation, but there's just as clearly an epidemic. Since there's no such thing as a genetic epidemic, the rate of increase is due to an envionmental cause.

We simply don't know what they are.

[Warpy]

13. Research is extremely sparse and very preliminary

and nothing has been proven, as yet.

Remember, there wasn't a differential diagnosis of autism until the 1930s and getting children specifically diagnosed instead of lumping them into the categories of mental retardation or childhood psychosis has been slow to change. That's responsible for the increase you've seen.

They might find an environmental trigger eventually, but that trigger is likely to have been pulled in utero. My own suspicion is that it will be neurotoxins, pesticides, but that's only a vague suspicion at this point.

[lumberjack_jeff]

14. Read the UC Davis study.

The rate of increase can't be accounted for by changing diagnoses or greater awareness. It's a real epidemic.

http://www.scientificamerican.com/article.cfm?id=autism-rise-driven-by-environment

[Warpy]

15. I read it.

I just don't agree.

[lumberjack_jeff]

16. Everyone's entitled to an opinion.

I simply provide links to substantiate mine.

[Warpy]

17. The problem is that they didn't account for ASD

which is used to categorize children with Asperger's and other children who are just a bit odd.

Those kids were just dismissed as oddballs not too long ago. Now they've been diagnosed as being somewhere on the autistic spectrum.

Picking holes in a study doesn't require Dr. Google, just careful reading.

Remember, ADHD and depression in children are also "epidemics" according to the methodology of this study.

[liberal_at_heart]

18. That adjustment was made and yet it has jumped from 1 in 150 to 1 in 100

I remember hearing about how better diagnosing accounted for the the 1 in 150 estimate so the adjustment has been made. But now the number is 1 in 100. There is something more going on here that just better diagnosing cannot account for.

[Warpy]

22. That latter number is incorrect. It's still 1:150

But since you're so heavily invested in your belief system, I'll just let you go on.

Don't think you can sway any health professional with nonsense, though. It's just not going to work.

[liberal_at_heart]

24. I will go on being a proud and protective mother of an autistic person

Your judgements of me mean nothing to me.

[liberal_at_heart]

27. That number of 1 in 100 by the way is given in a new CDC report

[lumberjack_jeff]

19. Incorrect.

They did account for shifting diagnoses and found that those diagnostic changes could account for no more than half the increase.

http://www.environmentalhealthnews.org/ehs/news/autism-and-environment

[unc70]

32. That study is intrinsically unable to prove or disprove anything

I looked closely at that study, found it somewhat interesting wrt their methodology and attempts at dealing with the problems using most of the so-called data, but see no basis for proving or disproving anything. An interesting collection of anecdotes, but so lacking consistent methodology and definitions it precludes systematic data validataion and analysis.

I sense that the cell biology researchers doing the basic science to understand how cells function, DNA, RNA, proteins, ... will soon reach a "critical mass" of knowledge enabling dramatic leaps in our understanding of many diseases, including autism. Later this month, I will find out a bit more of the details.

After over 40 years around these research areas, in spite of all that we have learned, popular culture still projects "blame" for autism onto the parents, moving from it being from "bad parenting" to the current focus on vaccinations, pollutants, or almost anything else. Similar for ADD and the rest.

My current working hypothesis is that each of these conditions is likely several different conditions with different causation, but with similar manifestations. Most of these will be found to have genetic components, with other factors involved with rates and severities.

I suspect that there are auto-immune components associated with some of these conditions.

BTW My own wildly speculative "hypothesis" is that the wide-spread use of soy protean by the food industry could play a role in this. It needs a lot of study for lots of other important concerns.

[lumberjack_jeff]

37. The purpose of the study was simple.

"Can the rate of increase of autism diagnoses in California in the 90's be attributable to changing diagnoses or changes in demographics?"

They demonstrated convincingly that no more than half of the increase could be thus explained away.

There is demonstrably a genetic component at work in some cases. But at a bare minimum, some environmental factor is triggering symptoms in people who are genetically vulnerable to it.

[unc70]

45. Simple purpose. But study and underlying data fatally inadequate to the task

there are far too many problems with the data they are working with that are impossible to resolve during validation and statistical analysis. The problem with the study is that it is trying to resolve the issues encountered trying to compare subjective diagnoses using different definitions, biases of all types, with no internal consistency over time or between observers.

Other studies looking at these problems "suggest" that the increases in autism rates are roughly matched by declines in rates for certain alternative designations.


BTW My first peer-reviewed article about data validation issues and methods was published over 30 years ago.

[lumberjack_jeff]

47. I would be interested in seeing any of those studies.

...Provided they are more recent than the UC Davis study.

[mike_c]

38. but why can't you see the glaring flaw in your own argument...?

If there is no legitimate connection between autism and childhood vaccines-- and the data are unambiguous on that point, THERE IS NO SUCH CONNECTION-- you DO increase your autistic child's risk of disease, deformity, and death by withholding vaccinations, and you do put other peoples' children at risk, FOR NO REASON WHATSOEVER.

Please-- THERE IS NO CONNECTION BETWEEN CHILDHOOD VACCINES AND AUTISM. None. Yet you turn right around and discuss that nonexistent connection as justification for withholding vaccines in your post. That argument is deeply flawed. Why use it as justification for putting your own child and others at risk?

[eridani]

54. Jeff is suggesting environmental causes OTHER THAN vaccines n/t

[mike_c]

55. I'm sorry, I was responding to LAH....

eom

[eridani]

56. Sorry--too many thread branchings here n/t

[ProdigalJunkMail]

3. crap...i unrecced by accident!

flawed science should be discarded as this is being. the problem is, too many people now have it in their heads that vaccines=autism. there are still people who believe we never went to the moon.

sP

[cbdo2007]

34. I recc to make up for your accidental.....I wouldn't compare this to the moon landing

though, just that many of us didn't know any better.

It's just one of those things where you hear something that's barely relevant to you if you don't have kids, but now that I've got one on the way I thought back and was like, "geez, I remember hearing something about vaccines causing autism, I don't know...." and then I looked into it and quickly found out that it was a false statement. It wasn't that I was hard core belief the other way, I was just thinking about it like a rumor that scared me.

[ProdigalJunkMail]

42. I have three girls...

and I have thought about it...but in my examination of the data that I could find found the 'link' to be spurious at best. And I know there are lots of people out there who aren't entrenched...but those that are entrenched on the whole vaccine scare are very much likened to the flat earthers and that sort.

sP

[MrsMatt]

46. I equate the anti-vax argument

with the old wives tale about cats suffocating newborns because they suck the delicious milky breath out of their bodies.

They are BOTH old wives tales.

[Berry Cool]

4. This is why scientific studies need to use larger bodies of subjects and select them at random

(using methodical means of random selection) rather than using small numbers of subjects gathered from a single source.

I am still amazed that his study and paper passed as legit in the scientific world for as long as they did. For all he knew, the reaction in these kids' bowels was from his son's birthday cake!

[LeftishBrit]

8. Absolutely - I'm surprised the paper passed peer review in the first place.

[Warpy]

9. Stories like this can't be posted often enough

It's absolutely earth shattering for a stodgy medical journal like the Lancet to admit they were hoaxed by a quack. Such rare occurrences are generally ignored and everybody hopes they're quickly buried in an avalanche of articles to the contrary.

Wakefield is different. Playing on the fears of nervous and guilty parents, he's caused terrible harm in the UK by causing a resurgence in easily preventable diseases that have the potential to harm and kill children.

Now he's moved to the US to continue his quackery on the Hollywood cocktail circuit where he joins with medically ignorant hysterics in spreading this utter nonsense.

Wakefield is the worst sort of quack, an educated man who started with an erroneous conclusion and rigged evidence to support it instead of doing legitimate study (which has been done by other doctors) and admitting his beginning hypothesis was wrong. He's a zealot and a crusader and his crusade will end up killing children. His medical education gives him a veneer of knowledge that will fool the medically ignorant. Make no mistake, he's on a par with the quacks who used radiation to cure acne in the 1930s and who push magnets and magic water to cure cancer.

Wakefield belongs in prison for fraud, at the very least. Now he's our problem. The UK seems to have washed their hands of the man. Perhaps as severe illness rises in the US, we'll finally go after him via lawsuits.

[paulsby]

20. who is "us?"

it didn't lead ME astray.

it lead some hysterical idiots astray though

[RoyGBiv]

31. +1

[Jeff In Milwaukee]

21. And now the "Vaccines Cause Autism" meme will NEVER die...

It's like people who think the moon landing was faked. There will be a cadre of people who will never, EVER be convinced that this whole thing was a mistake and that vaccines save lives. You could bury them up to their neck in scientific literature to the contrary, but they will cling to some third-hand anecdote about how some kid developed autism after being vaccinated.

[rucky]

23. One honest question:

Where does the fanatical anti-vaccine lobby come from, and how do they benefit from lobbying against vaccines?

This is the only part of the saga that doesn't make sense to me.

[SlipperySlope]

25. people want to believe

[rucky]

26. Well what was this doctor's motivation?

get published? cause controversy for decades?

I suppose people have done more for less, but my usual "qui buono?" question isn't leading to any rational conclusions.

[cherokeeprogressive]

30. His motivation was his belief that he was right. n/t

[anonymous171]

33. He has his own, "safer" version of the vaccine

http://briandeer.com/mmr/1998-vaccine-patent.pdf

[rucky]

49. Okay, now it makes sense.

thanks

[Statistical]

44. People need someone/something to blame.

[MicaelS]

28. People can not accept the fact

That their genetic heritage is at fault. They search for anyone or anything to blame but themselves. It's much easier to blame things instead of people. That's my opinion.

[Hippo_Tron]

35. Refusal to accept that a product made by a big corporation can be good is part of it, IMO

There was a great episode of House where a clinic patient comes in with her sick baby and mentions that she has not gotten him vaccinated because she thinks that vaccines don't really work and the big pharma corporations just want us to think they do. House tells her that the baby industry is certainly happy that she believes that.

[donquijoterocket]

29. Journalism

I blame the dismal state of journalism and particularly the extremely dismal state of science journalism. Most reporters are little better than stenographers grabbing what's handy and easily digestible for them and their audience.I suspect they're reluctant to write about what's not easily understandable because doing so has a tendency to make them look less than competent and because complex subjects cause the average reader's eyes to glaze over after a short time. Had our fourth estate been practicing real journalism over the years people would be more accustomed to reading articles that present difficult concepts and complex analysis. A real good example in my mind is the one "global cooling" article the wingnuts continually cite. One reporter latched onto an incomplete preliminary study because it was a simple hook for a complicated subject and now we're stuck with it.
There are only a few real good science writers- Zimmer and Judson come to mind- but they've got a limited reach.

[Robb]

36. In defense of journalists, most haven't studied science.

Until you've seen a bunch of English majors trying to write about numbers, you haven't seen the newspaper business. :D

Now, as you note, there are exceptions. But they are few and far between. Similarly, most scientists can't write their way out of a paper bag.

[Berry Cool]

39. I had to take courses on research methods in journalism school

so I would understand scientific methods and how to properly conduct a poll. That's where I learned about the importance of random selection of subjects.

[mike_c]

40. with all due respect...

Most scientists that I know write for a living. Most academic scientists that I know write MUCH better than most of the english majors we teach, and whose written work we struggle to comprehend and correct.

One of the worst problems that I see is that journalists-- who as you say are often ignorant about the science in their stories and the background that gives them context-- most of those journalists insist on NOT allowing people who might not be so ignorant to have prepress access to their manuscripts for scientific review. That's one of the givens for scientists-- most of our written work is peer reviewed, as well as editorially reviewed. Journalists trying to write intelligently about things they utterly do not understand might learn from that example, especially if they're deceiving themselves by thinking that screwing the story up somehow keeps their journalistic integrity more intact than allowing prepress review by someone who knows what they're talking about.

As a general rule, I no longer grant interviews because I've been burned by journalists too many times.

[Robb]

43. With all due respect

With respect to the writing of academic scientists, well of course you prefer it. :D

[Odin2005]

41. This autistic person thinks Wakefield is a asshole and should be in JAIL.

[BlueIris]

48. I was wondering when we'd hear from you in this thread.

'Sup.

[unapatriciated]

50. Hey Odin, do you know where Whapeton, ND is?

My ex has family there.

[Odin2005]

51. Yep, about an hour south of Fargo!

:hi:

[unapatriciated]

52. my nephew still runs the family farm just outside of Whapeton.

His grandparents used to run the only general store in town.
I remember the first time I visited, made tacos for them. It was the first time they had them. (but that is going back 30 years for me)
:hi:

[Lorien]

53. OK, not vaccines. Then...what?

SOMETHING is actually causing a huge increase in children with autism. Several friends of mine have kids with autism. All of them are around the same age. When I was a child I never heard about it, nor did I meet any children displaying the characteristics of an autistic child. I'm discovering through my own health issues that I and many others have a combination of hypothyroid/ adrenal fatigue/ hormonal imbalances and heavy metal poisoning that went undiagnosed for decades until I was hardly able to function. Could heavy metal poisoning of the mothers have anything to do with this?

[Fire_Medic_Dave]

57. What types of heavy metals were you exposed to?