Vaccines and autism: a thoughtful debate 1

I have just started watching the video of the debate between David Kirby and Arthur Allen on the subject of autism and vaccines. Kirby wrote a book, Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy which starts from the premise that the rapid growth in recorded cases of autism in the USA that began in the early 1990s represented a real growth in numbers and could not be explaind by increased awareness, better diagnostic procedures or a change in the criteria. There had to be an environmental trigger. At the same time changes in the mandatory vaccination programme for children in the USA  increased exposure to thimerosal, a preservative that contains ethyl mercury.  

Did the thimerosal cause an autism epidemic? Kirby believes it did. Allen once thought it was a credible hypothesis. But in the course of researching his book, Vaccine, the Controversial Story of Medicine’s Greatest Lifesaver, Allen changed his mind.  Allen has also begun to question whether there has been an epidemic or not. See his review of Roy Grinker’s book, Unstrange Minds, Remapping the World of Autism. 

I was looking forward to the debate. But within minutes I was hitting the pause button and diving into my archive of autism related papers. Kirby began, quite rightly, with a discussion of epidemiology. But his version seemed at odds with what I thought I knew. Still, this was an important debate. Kirby must have checked his facts beforehand. So I went to check mine.

Kirby’s Fact 1.

In the 1980s autism prevalence in the USA was between 1 and 2 in 10,000

If anyone has a reference to an epidemiological study for this extremely low figure I would love to have it.  When Lorna Wing surveyed the major epidemiological studies carried out between 1966 and 1992 she referred to two studies in Utah (Ritvo et al 1989) and North Dakota (Burd et al 1987) that found rates of 4 and 3.3 in 10,000 respectively for DSM III autism which use very similar criteria to Kanner’s criteria. She also mentioned a study by Treffert which found a prevalence of 3 in 10,000 in 1970 in Wisconsin. When I considered Wing’s survey in an earlier post  I remarked upon the robust nature of the figures. Researchers who combined consistent epidemiological methods with Kanner’s diagnostic criteria found rates of between 4 and 5 in 10,000.

Kirby’s Fact 2.

In the late 1990s autism prevalence in the USA was 20 in 10,000

Kirby offers no citations for this figure. Probably the most well founded study in the USA in the 1990s was by Yeargin-Allsopp et al in Atlanta in 1996 which found a rate of 34 in 10,000 in 3-10 year olds. It was reprinted in JAMA in 2003. In the same edition Fombonne considers this an underestimate and thinks the 5 to 8 year olds in the study provide a more reliable estimate of 41 – 45 in 10,000. (JAMA 2003 Volume 289 Issue 1.)For comparison Wing and Gould found a rate of 20 in 10,000 in the Camberwell study in 1979. This study confined itself to children with learning dificulties in special schools and never looked at children in mainstream classes where most autistic children are found today.

Kirby’s Fact 3.

By 2000 autism prevalence in the USA was 40 in 10,000

Again there is no citation. And autism prevalence in whom? What is the age cohort?

Kirby’s Fact 4.

By 2004 autism prevalence in the USA was 60 in 10,000

We do have a lot of epidemiology for this figure.It is supported by the Medical Research Council in the UK and the Centers for Disease Control in the USA. But it is usually taken to mean that we have now reached a reasonably accurate estimate of prevalence figures for the entire autistic spectrum across the entire population. Kirby sems to be using these figures to suggest a year on year increase in incidence which is not the same as prevalence. Generation Rescue made a similar mistake last year which I commented on.

When you are dealing with statistics it is important not to get incidence and prevalence muddled up. Incidence refers to the number of new cases in a population over a period of time. Prevalence refers to the total number of cases in a given population at a specific time.

Kirby’s Fact 5.

By 2004 th USA figure of 60 in 10,000 was the same as in the UK. But the USA had 40 in 10,000 with autstic disorder and only 20 in 10,000 with other ASDs. In Britain the figures are reversed: 20 in 10,000 with Autistic disorder and 40 in 10,000 with other ASDs.

Kirby’s explanation is simple. Here in the UK we only ever had half the thimerosal in our vaccines compared to our American cousins. So we only got half the autistic disorder. OK. Thimerosal causes autistic disorder. There is a linear relationship. Double the thimerosal and you double the autistic disorder. So what causes PDD-NOS and Asperger Syndrome? Why should they be twice as prevalent in the UK as in the USA? Is that environmental or genetic? Perhaps we Brits are naturally more high functioning than the Yanks :-)

By this time I was beginning to get a little bit sceptical about Kirby’s figures. He actually did mention a source for his 40 in 10,000 with autistic disorder, Brick Township. I remember that one; 40 in 10,000 for autistic disorder is correct. But the figure in Brick Township for other ASDs was not 20 in 10,000. it was 27 in 10,000. 67 in 10,000! That is a lot of autism, except for one fact. It was a very small sample; 60 children aged 3 to 10. The authors acknowledge the problems in generalizing from their data.

As mentioned earlier, the major limitation of this study was an inability to ascertain higher functioning individuals who were not in any special education class in public schools or had not been seen by participating clinicians. Consequently, because of these case-finding limitations, the results from Brick Township must be considered a minimal prevalence for autism. Categorical distinctions between autistic disorder and the other ASD were probably limited because the ADOS-G has been found to over estimate autistic disorder relative to PDD-NOS. Also, because clinical assessments could not be conducted for 17 children and the diagnosis had to be based on records alone, the reliability and validity of the diagnosis for those children is limited. Discrimination between PDD-NOS and autistic disorder also may have been influenced for these cases given that over 56% of the children who participated in the clinical assessment were determined to have autistic disorder in comparison to only 27% of the children assessed by record review only. Finally, the prevalence rates for autism obtained in this study must be generalized with caution since the community was selected for study because of a suspicion of increased numbers of children with the disorder. Studies of larger populations, such as one that included surrounding communities, may yield different findings.

They may indeed.

Kirby’s Fact 6

Denmark removed all its thimerosal way back in 1992 and it has a rate of only 8 in 10,000.

Yes, except that according to this study autism rates went up in Denmark after they removed the thimerosal. Actually the base rates for autism in this study were so low it is ridiculous, less than 1 in a 1000 throughout the seventies and eighties. That is less than Brask found in 1972 in Denmark for Kanner’s autism. (4.3 in 10,000) A more recent study suggests the real rate for ASDs in Denmark is closer to the 34 in 10, 000 that Yeargin-Allsopp found in Atlanta in 1996. the authors conclude:

We found that the estimated prevalences of the PDDs studied were probably underestimated. Furthermore, the increasing prevalence and incidence rates during the 1990s may well be explained by changes in the registration procedures and more awareness of the disorders, although a true increase in the incidence cannot be ruled out.

So much for Denmark then. I cannot say that  I am looking forward to the rest of this debate if this is the standard of evidence employed by Kirby. But I will resist the temptation to fast forward to Arthur Allen. I will do my blogging duty. Speaking of Arthur Allen, he has written about the debate on his blog and is open to comments. Kirby, despite boasting that whenever he writes on the Huffington Post he goes straight to number one, has yet to share his thoughts on the debate with a wider audience.

 STOP PRESS Kirby has made the slides  from his presentation available on his website. I wont be downloading them just yet. I don’t want to spoil the ending.

to be continued …

EDIT

… or not. Kev has blogged the debate here and here. So has Joseph, BC and D0′C. And Diva has set it to music.

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24 thoughts on “Vaccines and autism: a thoughtful debate 1

  1. In the 1980s autism prevalence in the USA was between 1 and 2 in 10,000

    When I was born, in 1983, I was very obviously SOMETHING. Continued being very obviously SOMETHING until this very day. That SOMETHING went by…more names than I want to think about…until someone finally went ‘Autism’.

    So, would I be in his ’1 to 2 in 10000′ or his ’60 in 10000′? Both? Neither? Do I start being a part of his count when I’m diagnosed (that would be part of the 40, I believe. The 60, definitely. It’s sad how much track I’ve lost.)? If the latter, does it then appear that I’m some shiny new case instead of the crazy thing bouncing around that was finally named that I am?

    Do you think this even occurred to him?

  2. One strange thing about this debate is the Hollywood intro to the debate on the video (viewable at the DAN! website) in the credits viewable on YouTube, it says the “screenplay” was by Bernie Rimland. Did Bernie tell them what he wanted the video to include before he died? Did he say that Kirby ought to look like he was too big for his suit? Did Bernie tell David to act like he was on uppers, talk too fast, gesture too fast, and sway back and forth nervously as if he looked like he knew he was lying? Was Kirby directed to charm an audience that was pre-packed with adoring fans? Maybe so. I’d like to see Kirby try his little act out on an audience of skeptics.

  3. I’ve started watching the “debate” and what really struck me was the decision of the camera person, or the boss, to focus on the two men as they spoke. When scientists listen to a presentation, they could really give a rat’s tail if somebody is picking their nose up there as long as there is effective dialog to support and explain the slides on the screen. I really, and I mean really, don’t want to see Kirby’s mug, rather, it would have been much more meaningful to have had the camera focused solely on the slides during that portion of the presentation. The audio could have had their explanations while the slides were in full view including any laser pointing to accentuate certain points. This format would have forced a full and proper explanation of slides and it would have been quite obvious when vague and unsubstantiated innuendo was being passed as documented science. It’s interesting that Kirby decided to put them up on the net afterword – I guess even he can identify a glamor shot posing as a debate video when he sees one.

    This little movie ARI made is pure fluff. Lisa Ackerman is right when she said, “And I agree– it was hardly a debate”. The one funny part is that she seems genuinely surprised that she had a difficult time getting anyone to debate Kirby. The only thing that the MTV wannabe producers were missing in this character study production was a red carpet pre-show analysis of the wardrobes. Note to the morons who set this charade up: if you want facts and meaningful discussion, focus on the information being presented rather than paying homage to someone’s stage presence; what you have is documented proof that the camera loves style rather than substance. In short, this video of the presentations is a missed opportunity for delivering science to the masses while at the same time being a golden opportunity for TACANOW.

    Btw, one has to wonder if Hillary will debate Lyndon Larouche.

  4. I’m looking at the slides and the graphs he shows and the papers he refers to don’t say what he says they are saying.

    Slide number 11 is a very misleading graph crafted by Mark Blaxill of SAFE MINDS. He shows the IDEA data (slide 9) and says that it shows the epidemic, but what it shows it lots of kids being added to the schools counts as autistic as opposed to whatever else they would have been categorized as previously, since they didn’t have a category for “autism” before 1992, the point where his graph takes off. It looks like autism is this massive category because the stability of the total number of kids is used as a comparison, but autism is a very slim slice of the pie compared to MR and SLI, it would be easy for a small percentage of MR and SLI kids to slide over into the autistic category, there are overlaps in symptoms. He doesn’t show the drop in the total number of MR kids. Why? Pregnant moms and infants are being BOMBARDED by every horrific chemical in the book, led by mercury… but the rate of Mental Retardation is DROPPING?

    It’s just all so old and tired at this point. Pathetic. They had to package it with something like glitz or the pathetic-ness of his arguments would show throw very quickly.

    I find it interesting that the Kirby minions went over to Arthur Allen’s blog and did their best to insult Arthur and claim a victory for David Kirby, but Kirby won’t respond to comments on Huffpoof or elsewhere, in writing. Oh, he might respond to a comment like on the EoHarm group like, “nice haircut!” or “you da man!,” but nothing about Burbacher or Vargas from people he hasn’t convinced. I guess we can see who has the courage to defend his statements and who doesn’t.

  5. It was recently stated, in the Canadian House of Commons, that *10 years ago* the rate was 1 in 10,000. Pure fiction this 1 in 10,000 number in every case I’ve heard. The prevalence of autism in the 1960s was estimated at 4-5 in
    10,000 (Lotter, 1966).

  6. Someone really needs to do something about those “facts” that float around in Canadian politics. I think the 1 in 10,000 number can be traced back to Generation Rescue.

  7. Pingback: Left Brain/Right Brain » David Kirby/Arthur Allen Debate Part II

  8. Sorry, the FOCA sheet isn’t much better. It used to say “Ten years ago the prevalence of autism was 1 in 10,000 births.” until Jennifer challenged that “fact” (and a number of others). Now it says “20 years ago the prevalence of autism was 2 to 5 in 10,000 births*.” but there is no footnote to go with the “*”. It was seen as quite an outrage that anyone would dare challenge the “fact” on the Fact Sheets the Canadian autism advocates are pushing. Much name-calling etc …… followed by a “revised fact sheet”.

  9. That “fact” sheet (the one promoted by FEAT, that jypsy linked to) is the basis for the major decisions made about autistics in Canada.

    It has been quoted in the House of Commons and the Senate, and I’ve been told by an MP that this “fact” sheet must be true–on the grounds of her unshakeable belief that it was provided to Canada’s leaders by expert autism researchers. I wonder who told her that.

    Andrew Kavchak, one of its authors, is one of the most eminent of our famous Canadian autism advocates. That “fact sheet” has been given to every MP and Senator in Canada, and none has even questioned it.

    I don’t know how to put in a URL here, but I’ve written about some of the consequences of accepting Mr Kavchak’s epidemiology, which has the effect of denying the existence of most autistics in Canada. I’ll try a hyperlink here. In case I’ve totally screwed up, here’s the URL in total too http://autismcrisis.blogspot.com/2006/10/strategy-to-deny-autistic-lives.html

    When the MP Ruby Dhalla repeated the 1 in 10,000 figure in the House, she was praised by Harold Doherty for this (for educating Canadians about autism). That is, she was praised for denying the lives of most autistics in Canada.

    Isn’t it remarkable that those who have claimed to be representing all autistics in Canada, as FEAT does, as Mr Kavchak does, as Mr Doherty does, are the ones who are telling Canada’s political leaders that most autistics in Canada don’t even exist (or are praising these leaders for rendering non-existent the lives of most autistics in Canada).

    FEAT et al. are lobbying to deny most autistics in Canada any services or assistance whatsoever. They are telling governments that they have no obligation to provide help to or even acknowledge the existence of most autistics in Canada. People who don’t exist don’t need services (or even recognition, much less rights and a voice).

  10. Is there actually nobody other than yourself daring to say anything about the experiences of real autistic lives in Canada?

    Gee David, you almost sound like some of the advocates here who think Michelle, Jennifer & I are the same person ;)

    Some of us do dare to say something now and then, but I for one don’t say it as well and don’t have near the scientific knowledge behind it.

    It isn’t very pretty when we do either. These folks don’t respond on blogs and such the way they do on private lists and in private emails. Behind the scenes it’s a very, very, ugly picture.

    I’m still wondering if this new movement Mr. Doherty has coined a name for will get it’s own hate site too….

  11. Hi Mike,

    I came here via your invitation over on Arthur Allen’s blog. I’ve had a look around the Autism Hub as you suggested. I must say I am quite impressed. Calm, rational folks who have fact to back up their statements. A refreshing change from the “woe is us, the sky is falling” attitude that seems to be making the headlines these days.

    Thanks again for leading me here.

  12. Hiya jypsy,

    “Gee David, you almost sound like some of the advocates here who think Michelle, Jennifer & I are the same person ;)”

    Nah… I know you’re all different – and I should point out here that I was not taking a shot at Michelle with my comment; I was seriously asking on the basis of her being probably the most vocal person known to those of us outside of Canada… so many we don’t get to know about here in the far frozen wastes of Finland.

    “Some of us do dare to say something now and then, but I for one don’t say it as well and don’t have near the scientific knowledge behind it.”

    This is what I meant… with Michelle daring to say more than most would. This is not a negative criticism of her work.

    “It isn’t very pretty when we do either. These folks don’t respond on blogs and such the way they do on private lists and in private emails. Behind the scenes it’s a very, very, ugly picture.”

    Yeh, I can imagine, after the things said about me by certain bloggers who shall remain nameless at this juncture.

    “I’m still wondering if this new movement Mr. Doherty has coined a name for will get it’s own hate site too….”

    He had a go ay me for what I said about his question to Kassie the other day. Given his clear reputation for being Canada’s answer to a certain blogger, I couldn’t care less if or no he respects me… I’ve seen how he reacts to sensible argument… not clever, really.

  13. Thanks jypsy and Michelle. I am honored to be thought to be in any way similar to you ;) But really, I’m not either of you.

    It’s is amazing to me that the nastier of the Canadian autism activists are not called to account more often by the regular parents. I’ve spoken to many after some of my more vocal bouts of opposition, and I keep hearing positive things “Keep up the good fight” etc. But they are all afraid to speak up publically. Maybe they are afraid of being slammed. Or maybe they simply think that anything that brings attention to autism is OK, even if it is a lie. They need to think of what is going to happen to their children when they grow up and find they are discriminated against because “everybody knows that you belong in an institution”.

  14. Mat
    I think you must be one of the hidden horde. If you lived in Canada you would not exist. Ask Michelle.

    hipponymous and TACA swings and a miss
    Kirby is a showman. It was all style over substance and when you look closely at the substance as Ms Clarke points out, you can see why he had to put on the style.

    Another Voice
    Arthur was thoughtful and reasonable. He did not make wild claims and did not try to play to the crowd. He presented the facts as he understood them. I wish they would invite me todebate Kirby. I have substance AND style.

  15. Regarding all the comments about prevalence and the situation in Canada.

    What you guys are up against is horrendous. Do peoplelike Fombonne get involved in these debates? Has anone asked him about the 1 in 10,000?

  16. RealScienceisDead

    welcome. I am glad you like what you found. The merchants of doom may have themoney and the slick PR. We have to rely on the facts. Though the money would be nice as well ;-)

  17. Pingback: Left Brain/Right Brain » David Kirby/Arthur Allen Debate Part III

  18. Maybe they are afraid of being slammed.

    Well, if they are observing what’s happened to some of us why wouldn’t they be? Who needs that kind of abuse?!

    What gets me is that I know that they don’t want their children treated the way they are treating adult autistics when their kids are our age.

    sad, sad, sad…

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