Respectful Insolence

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Regular readers of this blog know pretty much what I think of Jenny McCarthy. In brief, she’s an opportunistic, scientifically ignorant but media-savvy twit whose hubris leads her to believe that her Google University education, coupled with her personal anecdotal experience, render her proclamations that vaccines cause autism and that “biomedical” quackery can cure it more convincing than all that boring science, epidemiology, and clinical trials. Indeed, her critical thinking skills are so poor that she was once a huge booster of the “Indigo Child” movement, but had to try to purge the Internet of all traces of her involvement with that woo in order to be reborn as a “mother warrior” fighting to cure autism–or at least to keep parents from vaccinating their children. Or, as the mad Photoshopping skills of Rebel Macaque parody her, she’s a medical whackaloon, much as all the others parodied are. (The tattoo on her right arm is a particularly brilliant addition to the parody.)

But if you think I’m tough on poor ol’ Jenny, you ain’t seen nothin’ yet. Check out this series of posts from The Daily Gonzo:

  1. Jenny and Me
  2. …and now I must go and bleach my brain
  3. “What’s Wal-mart? Do they sell walls and stuff?”
  4. Generation Revenue
  5. Emotional Wellness

Personally, what I find most amusing about Generation Rescue and Age of Autism is how hypocritical they are. They castigate, for instance, Dr. Paul Offit for having had his work funded by pharmaceutical companies, going so far as to call him “Dr. Proffit”; yet they chase after every dollar they can from sponsorships by purveyors of dubious “biomedical” treatments for autism. Meanwhile, Jenny and Jim command big bucks on the speaking circuit (Jim more than Jenny; being a real, as opposed to washed-up, star has its advantages).

Anyway, it’s very relaxing and amusing for me to let someone else dump on Jenny McCarthy and her “autism charity” Generation Rescue for a while, while I just sit back and enjoy. Every so often, even Orac needs some down time.

Comments

  1. #1 Patrick
    March 9, 2009

    :)

  2. #2 wfjag
    March 9, 2009

    “They castigate, for instance, Dr. Paul Offit for having had his work funded by pharmaceutical companies, [yet they ignore that their hero, Dr. Andrew Wakefield, had his work funded by trial lawyers seeking to sue pharmaceutical companies and that he was seeking to have his vaccine replace the MMR vaccine so he could profit from royalities from pharmaceutical companies.]”

    How’s that?

  3. #3 Uncle Dave
    March 9, 2009

    McCarthy Reveals: Bathing with laundry balls cures autism!

    Did she bath with the laundry balls or did she put her child in?
    Which brand of laundry balls?
    Which setting do you use?
    Do you put your kid in alone or do you put him in with knits or cottons?
    How long?
    obviously not a high heat setting?

    Dammit! You call this a science blog yet you have no specifics!

  4. #4 Chemgeek
    March 9, 2009

    yup, but she sher is perty

  5. #5 notmercury
    March 9, 2009

    No, it’s true but they have to be magnetic zeolite clay laundry balls.

  6. #6 Stacy H
    March 9, 2009

    That Jenny McCarthy would use botox is just about the funniest thing I’ve ever read. Not only is does she lack brains she also lacks a sense of self awareness and humor. I shall sit here and giggle myself silly at the spectacle of Jenny “Toxins Are Bad” McCarthy injecting herself with actual (GASP!) toxins for the silliest of possible purposes.

  7. #7 Orac
    March 9, 2009

    “They castigate, for instance, Dr. Paul Offit for having had his work funded by pharmaceutical companies, [yet they ignore that their hero, Dr. Andrew Wakefield, had his work funded by trial lawyers seeking to sue pharmaceutical companies and that he was seeking to have his vaccine replace the MMR vaccine so he could profit from royalities from pharmaceutical companies.]”

    How’s that?

    Better than my version, actually.

  8. #8 zeno
    March 9, 2009

    Stacy said: “I shall sit here and giggle myself silly at the spectacle of Jenny “Toxins Are Bad” McCarthy injecting herself with actual (GASP!) toxins for the silliest of possible purposes.”

    Now, if it had been for some life-saving treatment, we might have forgiven her…but to get rid of wrinkles???

  9. #9 Rogue Epidemiologist
    March 9, 2009

    I have to hand it to her cosmetic surgeon: Jenny’s plastic-enhanced breasticles look quite natural.

  10. #10 Jake Crosby
    March 9, 2009

    Orac,

    I like how you make fun of the Indigo Movement while linking to a site that apparently supports neurodiversity. Apparently, one kind of quackery is fine but another isn’t? If you’re a skeptic, shouldn’t you also be skeptical of neurodiversity?

    It’s not pharmaceutical companies in particular anyone is against, merely the conflict of interest that the ties with them would cause due to all the drug patents, grant support, corporate loyalties and financial royalties. On the other hand, autistic people have been taking vitamins since before anyone knew thimerosal was even in shots.

    As you know, ScienceBlogs is owned by Seed Media Group. And Seed’s CEO Adam Bly spoke at the renowned “Council of Competitiveness” in front of other big corporate leaders on the councils exec committee, including Richard Clark, CEO of Merck Pharmaceuticals. Bly did scientific research at the age of 16, is that right? That was the same age when I was proving myself academically. The year before I had an aide in most of my classes. What I’d have given to have been at the functioning level of Bly (who is neurotypical, right?) at that age…

    Btw, how long does the effectiveness of Menactra last? I got one summer of 2007 before going to college and plan on getting a booster when the effects from the first one wears off. I figured you must have a lot of knowledge about vaccines since you frequently blog about “anti-vaccination lunacy.” Surely you can answer my question, can’t you?

  11. #11 SKFK
    March 9, 2009

    “Now, if it had been for some life-saving treatment, we might have forgiven her…but to get rid of wrinkles???”

    Since her physical appearance is the only thing that makes it possible for her to earn a living, I’d say that’s a “life-saving treatment.”

  12. #12 wfjag
    March 9, 2009

    Thank you. It’s not copy-righted, so fair use means you can use it whenever you wish (and, I don’t remember the first place I read it — Prometheus? Dr. Novella? Autism Diva? Neurodiversity? Those facts are well known by those familiar with Dr. Wackfield, and well-documented in the court records. They just aren’t often noted, despite the irony of Gen. Res., et al, constantly bleating “Offit makes a profit from his patent.” So, please, remind your readers as often as necessary — especially when noting the irony of Dr. Wackfield’s supporters).

  13. #13 The Gonzo Girl
    March 9, 2009

    Whaaa! :O
    Thank you, Orac!!!!!
    Writing this series was a lot of work, so I really appreciate it. :)

  14. #14 The Gonzo Girl
    March 9, 2009

    …and wow, I just got an e-mail from my local “Rescue Angel” in which she advised me to go on a diet “free of carbohydrates”.
    How can people, who’ve obviously never had a single lesson in biology give dietary advice?
    Mind-boggling.

  15. #15 Jake Crosby
    March 9, 2009

    Orac,
    I notice you link these criticisms to an ND website, shouldn’t a skeptic like yourself also criticize neurodiversity if he is also criticizing the Indigo Movement. You’re a skeptic, right? You’re only skeptical of one kind of ridiculousness but not another?

    It’s not pharmaceutical companies alone that we have a problem with, it’s the conflicts of interest that would arise from pharmaceutical corporate ties such as a vaccine patent, grant support, corporate loyalties, and millions of dollars in royalties which all apply to Paul Offit. These COIs don’t apply to vitamin sellers, autistic people have been taking vitamins since before we knew mercury was even in vaccines.

    Besides, your blog is owned by Seed Media Group. The CEO of which, Adam Bly, spoke for the Council of Competitiveness in front of corporate CEOs who sit on the council’s executive committee including Richard Clark, CEO of Merck. Bly carried out biological research when he was sixteen, becoming the youngest person in Canada to do so and instantly making himself a prodigy. At that age I was in the middle of proving myself academically when just the year before I had an aide supervise me in most of my classes. What I’d have given to have been at the functioning level of Adam Bly (who is neurotypical, right?) at that age.

    Btw, how long does Menactra last? I got it in the summer of 2007 before starting college and am planning on getting a booster after it wears off. I figured you would know the answer to this since you frequently blog about “Antivaccination lunacy,” and therefore must have some knowledge about vaccines. Surely you know the answer to this, don’t you?

  16. #16 Orac
    March 9, 2009

    Besides, your blog is owned by Seed Media Group. The CEO of which, Adam Bly, spoke for the Council of Competitiveness in front of corporate CEOs who sit on the council’s executive committee including Richard Clark, CEO of Merck. Bly carried out biological research when he was sixteen, becoming the youngest person in Canada to do so and instantly making himself a prodigy. At that age I was in the middle of proving myself academically when just the year before I had an aide supervise me in most of my classes. What I’d have given to have been at the functioning level of Adam Bly (who is neurotypical, right?) at that age.

    I see you’ve been reading the other medical whackaloons over at Age of Autism.

    That’s a lame attempt at a pharma shill gambit, even by the low standards of AoA. Oh, and you can tell J.B. Handley I said so.

  17. #17 HCN
    March 9, 2009

    Project much, Jakey?

    So you are playing the Pharma Gambit:
    http://scienceblogs.com/insolence/2006/09/the_pharma_shill_gambit_1.php

    How lame is that!?

    Do me a favor, young Master Crosby, show me exactly what actual factual scientific evidence shows that the MMR is worse than measles, mumps and rubella and that the DTaP is worse than diphtheria, tetanus and pertussis (by the way, the latter is still killing more than a dozen American babies each year, and that number is increasing).

    Remember, it has to be in a real scientific paper that I can access through my local medical school library. Though I will reject out of hand anything written in Medical Hypothesis (look up the word “hypothesis” if you want to know why), or anything paid by lawyers or the hired guns of lawyers (that eliminates Wakefield and the Geiers). You can just tell me the PubMed Index number, that will be sufficient.

    Remember I have a kid who has had seizures caused by a real disease, and who has a genetic heart condition who can be killed by something as “simple” as measles or pertussis, so be very careful when suggesting that kids who die from vaccine preventable diseases deserve to die.

    By the way, if you have issues understanding some of the issues surrounding vaccines I suggest you listen to a podcast. The podcast I would highly recommend is this:
    http://www.quackcast.com/spodcasts/files/48f9db861d8a83f764792aa4b77990f8-29.html

  18. #18 Orac
    March 9, 2009

    By the way Jake, do you notice one difference here, compared to your usual stomping grounds of AoA?

    That’s right; I let people who disagree with me post unhindered except for the occasion getting caught up in the spam trap if there are too many links or certain “spammy” words. You can hate my guts, call me an idiot, cuss me out, whatever, and I’ll let you have your say. Contrast that to AoA, where if anyone gets too critical their comments are censored, where you and yours exist happily in an antivax echo chamber, where never is heard a discouraging word.

    Of course, you have to be able to deal with my skeptical readers, who are more than capable of dealing with the likes of you without any intervention on my part. In fact, that’s all the more reason for me to sit back and enjoy. Anyone got any popcorn?

  19. #19 Rjaye
    March 9, 2009

    Jake, You are now irritating. You are young, and have been fed the koolaid since you were a lad, I bet. Where do you think money is going to come from for research? Hm? And who will make drugs? I’m going to assume you are ignorant of what it takes to develop drugs and other treatments.

    The criticisms your group makes of Paul Offit is disingenuous, as it’s deflecting the very real criticism and concerns we have of your group’s leaders. The difference between Paul Offit and anyone representing the antivaxxers is that he is a real expert and he was upfront about all of his activities, which is something Blakefield, McCarthy, and the Geiers were not. They weren’t open with their “work,” (ie, working with lawyers suing major pharmaceutical companies in order to further their own financial interests, and lying immensely to scam vulnerable families with pseudo-science).

    Also to assume if you weren’t autistic, you would have been something like Adam Bly is a concern. That’s quite a dream, as Bly is a rare breed. If you didn’t have autism, you probably would have been quite ordinary, like most human beings. The fact you are in college is an indicator that you aren’t like normal human beings as most people don’t go to college. Just that fact puts you in the upper levels of human intellectual ability.

    You assume as well that just because many of us and Orac are critical of the antivax crowd that we don’t have concerns about the more extreme parts of the ND movement. The difference between antivaxxers and the ND movement is that the ND movement is for research into treatments and therapies that WORK for people on the spectrum, and do not (usually) advocate the lunacy and non-evidence based woo advocated by many on the antivax side. Contrary to the antivax movement, at least the ND movement has respect for those with severe ASDs, something I don’t get from the antivax movement. As an adult of middle years rapidly approaching those tinted golden, and with uncles and my father having been on the sprectrum, I find antivaxxers deluded at worst, and dangerous at most. As a daughter of a woman who died of post-polio syndrome and discovering one of my acquaintances is also suffering from it and facing a horrible death, I have no sympathy for those on the antivax side.

    I also am concerned that you are full of self pity. That is another result of the views you were raised with. It’s also typical of adolescence, so I hope that’s what it is. I hope you learn to appreciate yourself for your positives, and not keep carping on the negatives. To be so down on yourself is no way to live life.

    You are an example of what is wrong with the antivax side and Jenny McCarthy’s complicity and misleading statements: a young man with obvious talents, in college, and able to communicate very well verbally thinking he’s some kind of waste of humanity. It oozes from your words. And that’s tragic.

  20. #20 HCN
    March 9, 2009

    Well, Jakey, young man… I am one of those people who AoA has only let a couple of comments go through. They seemed to object to me asking Mr. Olmsted about his non-existent visit to the http://www.clinicforspecialchildren.org/CSC/Research.html

    Oh, and here is this interesting bit of maps I saw linked to from Dr. Benway’s website… it is the difference in the levels of pertussis in the USA in the past few years. Look at the map for 2001, and then for the more recent one:
    http://www.pertussis.com/locate.html … Do you notice how the areas in red are getting bigger? That means that due to the diligent efforts of Mr. Handley, Ms. Fisher, Ms. McCarthy and others fewer people are getting the DTaP vaccine, and that pertussis is coming back bigtime.

    Pertussis is caused by a lovely bacteria that creates a real honest to goodness toxin! That toxin loves to kills children under the age of one year old (basically by choking them to death as they try to breathe between coughs, doesn’t that sound fun!).

    Since my oldest son had neonatal seizure he was denied the DTP, but instead only got the DT vaccine. The reason was the scaremongering caused by Barbara Loe Fisher and her friends. They claimed that the pertussis part of the vaccine caused more seizures (it turned out that was false). At that time our county was going through a pertussis epidemic. Do you know what an “epidemic” is?

    I had to be very very careful who he came into contact with.

    To get an idea of when this was, it was in the same time period that over 120 Americans died from measles. Something that may happen again if your friends at AoA have their way.

    So go and do some real research, and tell me exactly what real actual factual scientific evidence shows that vaccines are worse than the diseases.

  21. #21 Joseph
    March 9, 2009

    When neurodiversity becomes a scientific hypothesis that is inconsistent with established scientific principles, by all means, be critical of neurodiversity. As it is, it’s simply a philosophical model; a way to think about disability, ability and the different types of brains that people have. It is independent of medicine or causation debates. (I realize you don’t get this point, Jake, judging by your recent post on neurodiversity.) It’s like saying that feminism should be criticized by scientific skeptics.

    In fact, many, though not all, neurodiversity proponents are adamant about the standards of ethics and science that should be in place when autistics are studied, but often are not. For example, behaviorism is considered a very effective evidence-based autism treatment modality, and yet, the only randomized trial of a behavioral treatment had results that were rather poor.

  22. #22 Rogue Epidemiologist
    March 9, 2009

    Jake Crosby, I feel sorry for you. You hate yourself so much.

  23. #23 wisdom teeth removal
    March 10, 2009

    wow at that cover…. google u, rolleyes

  24. #24 Vindaloo
    March 10, 2009

    Crosby – ditch Handley’s talking points and start thinking for yourself. You are confused and it’s pretty tough to watch you flounder like this. Here’s a hint: a philosophy is different than a scientific discipline. There are some obvious connections, but not in the way you imply.

    Look, if you’re angry about neurodiversity then so be it. But your little band of Jenny-worshipers just don’t have any science to back up your steadfast and evidence-free beliefs about either autism or vaccines. You’re throwing rocks at the moon.

  25. #25 notmercury
    March 10, 2009

    Orac: “Contrast that to AoA, where if anyone gets too critical their comments are censored, where you and yours exist happily in an antivax echo chamber, where never is heard a discouraging word.”

    Antivax echo chamber. Perfect!

  26. #26 Jen
    March 10, 2009

    Do you notice how the areas in red are getting bigger? That means that due to the diligent efforts of Mr. Handley, Ms. Fisher, Ms. McCarthy and others fewer people are getting the DTaP vaccine, and that pertussis is coming back bigtime.>>>>>>>>>>>>>>>>>>>>>>>>

    Odd…according to the link that YOU provided, the increase in pertussis is due to previous under-reporting and misdiagnosis. It doesn’t say anything at all about the increase being attributed to anti-vaccine groups.

    Now, since pertussis most certainly can be lethal to infants, and since it is often spread to them by underimmunized adults that have very mild symptoms that often go unrecognized as pertussis, I’m sure that you and everyone else here are up to date on your pertussis boosters, right?

  27. #27 Dawn
    March 10, 2009

    Actually, Jen, I am probably due for a booster and will ask my doctor about it when I have my next annual exam. However, since I apparently went through a bout of pertussis a few years ago (oh, the joys of coughing until you are breathless and vomiting…oh, and rib breakage, too…) so he might want to do titers first he said.

  28. #28 grenouille
    March 10, 2009

    Why Jen! I am touched by your faux concern.

    As a matter of fact, I am completely up to date on my pertussis boosters. Because of the large number of pseudo-intellectual anti-vax parents and their offspring in our area, I made sure I got vaccinated before I got pregnant. I was terrified of getting pertussis while pregnant and passing it on to my newborn.

    Thanks for asking!

  29. #29 ababa
    March 10, 2009

    Yes, Jen – I’m up to date on my DTaP and so is my family. Thanks to dipshits like you and Jake the world will have to worry about pertussis for a long time to come.

    Seriously, put down the keyboard. Let go of the mouse. How many hours a day do you spend fighting the good fight on the Internet, and how many tending to their children’s special needs? I have sympathy that you have two children that are autistic, but come on.

    Millions of people involved in a conspiracy or just a few con men and scared (but well meaning) taking advantage of the situation. Which is more likely?

    And Jake, while you are at it, ask JB how much Generation Rescue has spent on research versus advertising in the past 5 years or so. Yeah, he is really interested in helping. They could fund a really good study by now, the problem is they have a hard time finding reputable scientists to do a study with pre-determined results.

    Full page ads in newspapers pull in more donations than research though, so I wouldn’t hold my breath for any of that to change. Holding your breath that long will cause damage, unlike the non-existent mercury.

  30. #30 Clay
    March 10, 2009

    Jake wrote (on 14 Jan, AoA):

    “For me, the thimerosal-autism link was a logical explanation for my condition, and it was reassuring to know that my issue had nothing to do with who I am. This allowed me to accept my condition and disclose it to others.”

    Son, from your 16 yr old vantage point, it may have seemed a possible explanation, and you jumped at it, because it absolved you of any blame for being who you are, this was something that was done to you by greedy Doctors, pharmaceutical companies, corrupt politicians, etc. etc. I can see how this seemed a reasonable explanation, given your experiences, i.e., your mother trying to treat you with vitamins and whatever else. You sensed that she saw you as defective, and wanted to cure you. I can’t really blame her for that either, you can only go by what you know.

    Let me give you a more reassuring explanation: There is no blame for being born autistic, or AS, or PDD-NOS, whatever, for the same reason there’s no blame for being born black, or gay, or female, or any other group that society has ever looked down on.

    You are what you are, there’s no one to blame, not yourself, not your parents, not your Doctors; but if you want to blame God, then go right ahead. Then go on to make the best of your life. Identify your strengths and weaknesses. Utilize your strengths, make the most of them. Work on improving your weaknesses, or avoid those situations where they would come up. Don’t be hard on yourself when you fail to do something you’re just not naturally good at.

    One last bit of advice, (good for anyone), don’t get locked into a position before you have thoroughly researched it. One can be swayed by emotional appeals for this or that “cause”, and their arguments may sound good and altruistic, but they don’t tell the whole truth, such as how they will profit by “converting” you.

  31. #31 Vindaloo
    March 10, 2009

    As I read Jake’s words here and at Handley and Best’s AgeofIdiocy site, I feel both sorry for the young man and anger at Handley/Best/Blaxill/Geiers/Erb/Antivax Dawn for playing the kid.

    For shame Bradford, for shame.

  32. #32 Clay
    March 10, 2009

    From Wikipedia – Vaccination controversy – History
    Read about some anti-vaccinationist crackpots, Jake.

    Religious arguments against inoculation were advanced even before the work of Edward Jenner; for example, in a 1722 sermon entitled “The Dangerous and Sinful Practice of Inoculation” the English theologian Rev. Edward Massey argued that diseases are sent by God to punish sin and that any attempt to prevent smallpox via inoculation is a “diabolical operation”.[59] Some anti-vaccinationists still base their stance against vaccination with reference to their religious beliefs.[70]

    After Jenner’s work, vaccination became widespread in the United Kingdom in the early 1800s.[71] Variolation, which had preceded vaccination, was banned in 1840 because of its greater risks. Public policy and successive Vaccination Acts first encouraged vaccination and then made it mandatory for all infants in 1853, with the highest penalty for refusal being a prison sentence. This was a significant change in the relationship between the British state and its citizens, and there was a public backlash. After an 1867 law extended the requirement to age 14 years, its opponents focused concern on infringement of individual freedom, and eventually a 1898 law allowed for conscientious objection to compulsory vaccination.[3]

    In the 19th century, the city of Leicester in the UK achieved a high level of isolation of smallpox cases and great reduction in spread compared to other areas. The mainstay of Leicester’s approach to conquering smallpox was to decline vaccination and put their public funds into sanitary improvements.[72][73] Bigg’s account of the public health procedures in Leicester, presented as evidence to the Royal Commission, refers to erysipelas, an infection of the superficial tissues which was a complication of any surgical procedure.

    In the U.S., President Thomas Jefferson took a close interest in vaccination, alongside Dr. Waterhouse, chief physician at Boston. Jefferson encouraged the development of ways to transport vaccine material through the Southern states, which included measures to avoid damage by heat, a leading cause of ineffective batches. Smallpox outbreaks were contained by the latter half of the 19th century, a development widely attributed to vaccination of a large portion of the population.[74] Vaccination rates fell after this decline in smallpox cases, and the disease again became epidemic in the 1870s (see smallpox).
    1904 cartoon opposing the mandatory vaccination law in Brazil. “The Congress”, depicted as a Roman Caesar, threatens “the People”, in rags, with a sharp object and shackles.

    Anti-vaccination activity increased again in the U.S. in the late 19th century. After a visit to New York in 1879 by William Tebb, a prominent British anti-vaccinationist, the Anti-Vaccination Society of America was founded. The New England Anti-Compulsory Vaccination League was formed in 1882, and the Anti-Vaccination League of New York City in 1885.

    John Pitcairn, the wealthy founder of the Pittsburgh Plate Glass Company (now PPG Industries) emerged as a major financer and leader of the American anti-vaccination movement. On March 5, 1907, in Harrisburg, Pennsylvania, he delivered an address to the Committee on Public Health and Sanitation of the Pennsylvania General Assembly criticizing vaccination.[75] He later sponsored the National Anti-Vaccination Conference, which, held in Philadelphia on October, 1908, led to the creation of The Anti-Vaccination League of America. When the League was organized later that month, Pitcairn was chosen to be its first president.[76] On December 1, 1911, he was appointed by Pennsylvania Governor John K. Tener to the Pennsylvania State Vaccination Commission, and subsequently authored a detailed report strongly opposing the Commission’s conclusions.[76]. He continued to be a staunch opponent of vaccination until his death in 1916.

    In November 1904, in response to years of inadequate sanitation and disease, followed by a poorly-explained public health campaign led by the renowned Brazilian public health official Oswaldo Cruz, citizens and military cadets in Rio de Janeiro arose in a Revolta da Vacina or Vaccine Revolt. Riots broke out on the day a vaccination law took effect; vaccination symbolized the most feared and most tangible aspect of a public health plan that included other features such as urban renewal that many had opposed for years.[77]

    In the early 19th century, the anti-vaccination movement drew members from across a wide range of society; more recently, it has been reduced to a predominantly middle-class phenomenon.[78] Arguments against vaccines in the 21st century are often similar to those of 19th-century anti-vaccinationists.

  33. #33 Tsu Dho Nimh
    March 10, 2009

    Clay – “The mainstay of Leicester’s approach to conquering smallpox was to decline vaccination and put their public funds into sanitary improvements.”

    The sentence before that said:”In the 19th century, the city of Leicester in the UK achieved a high level of isolation of smallpox cases and great reduction in spread compared to other areas.”

    They put their efforts into strict quarantines and vaccinated contacts … the “cordon sanitaire” approach.

  34. #34 Daniel J. Andrews
    March 10, 2009

    Clay…good advice in your 10:57 a.m. post. Nicely said and succinct.

    Jake, if you ignore everything else, at least read Clay’s words.

  35. #35 catgirl
    March 10, 2009

    I have synesthesia, so I often wonder if the indigo movement is just a case of synesthesia gone horribly wrong. I’m thankful that I’ve always known the “auras” aren’t real.

  36. #36 DT
    March 10, 2009

    Odd…according to the link that YOU provided, the increase in pertussis is due to previous under-reporting and misdiagnosis.

    Actually that’s not correct. The web site says: “The increase in pertussis cases is in part attributed to….” And what do you think the other “part” of the increase might be due to?

    Well several factors are at play. Any drop in vaccination rate will play a part, and we know rates have declined, albeit slightly. The other reason may be that older children and adolescents are losing their immunity. This isn’t such a big deal for them, as an infection in this age group is no more than a bad cold usually. But if this is happening, these people serve as a reservoir for exposing and infecting the infants, which is a problem as these kids are susceptible until they have vaccine immunity of their own to protect them, and pertussis in an infant is pretty nasty.

    Personally, I’d like to see adolescents all get booster doses of pertussis vaccine, which would help quite a lot.

  37. #37 JennyJo
    March 10, 2009

    This is so nice, I read that Jenny grew up with three parents. I’m so happy for her.

  38. #38 Jacques Hughes
    March 10, 2009

    Damn, some people are misguided, sure. But others are so dumb it hurts to read the words they write. I’ve been a reader here for a while, and various other SEED blogs (wooo, Big Pharma…!!!) because I get to read FACTS.

    The whole situation reminds me of a post I wrote regarding Houdini and Arthur Conan Doyle (post Sherlock, when he started beliving in fairies at the bottom of the garden). Conan Doyle was shown, by Houdini, how it was ‘possible’ to walk through a brick wall using a rubber mat and a trapdoor under the wall. Doyle shook his head and, reputedly, said “No Harry, I believe you can walk through walls”.

    Evidence doesn’t work with the wilfully ignorant. Ever.
    Hopefully, evolution will do us all a favour and de-select the gene that predisposes for gullibility.

    JH

  39. #39 Clay
    March 10, 2009

    Jacques Hughes said:
    “Hopefully, evolution will do us all a favour and de-select the gene that predisposes for gullibility.”

    But, from all reports, autism is on the increase. :-)

  40. #40 daedalus2u
    March 10, 2009

    Clay, actually people on the autism spectrum tend to be somewhat more literal and fact based and less willing to take thing on faith than people who are NT. It is (mostly) the NT parents of people on the ASD spectrum who are the followers of the anti-vaxers. Virtually all of the so-called “autism advocacy groups” have essentially no adults with autism in any policy positions.

    I think there is a reason for this. My hypothesis is that it relates to what I consider to be the great trade-off along the autism spectrum, the trade-off of a theory of mind for a theory of reality.

    http://daedalus2u.blogspot.com/2008/10/theory-of-mind-vs-theory-of-reality.html

    I think there is great danger in trying to eliminate autism by preventing the birth of individuals who have genes associated with autism. I think that will tend to increase the gullibility of the human population. I also don’t think it will work to prevent autism.

  41. #41 Clay
    March 10, 2009

    Hi Daedalus,

    I guess I should have introduced myself, I’m a recently retired Aspie who only now has the time and opportunity to peruse the various blogs on the Hub. Of course, I’ve read this blog occasionally for years, but not all that often, and I didn’t have the time to respond. I never did see that blog you linked to before, but found it very interesting. (Okay, I didn’t have time to read all of it, but I will.)

    I’m sure you’re far more educated than I am, and I would be a fool to argue with you, so I won’t. In fact, I have a personal anecdote that lends credence to your stress/NO theory that I’ve never discussed with anyone. My mother once told me that my father once aimed a shotgun at her stomach shortly after she realized she was pregnant with me. (She was always tearing him down to me, he’d left her for a younger woman who owned her own beauty shop.) If true, it might have been about 6 weeks after conception. How’s that for stress?

    I was Dxd nearly 10 yrs ago, July ’99, and have been on autistic advocacy Lists most of that time, so I’m up to speed on things; we don’t disagree on anything of importance. I will say, however, that there have been many times when I have been naive and gullible. So many of my Listmates have said similar things that it seems to be a common experience among many Aspies. And then there was the tale of William Cottrell, the fella who was convicted of torching SUVs in an ELF protest of gas-guzzlers. An extremely intelligent Cal Tech student working on String Theory, he was set up by his “friends”. I’d call that being naive and gullible.

    I’ve included my URL this time, so click on my name for more info.

  42. #42 Clay
    March 10, 2009

    Sonofagun, something’s happened to my web page, all the pics are absent, leaving only the poetry below. I dunno.

  43. #43 K
    March 10, 2009

    “Having an autistic child, tragic.” By the subject photoshop artist

    Bring on the photoshop, however, I don’t consider my life nor my son’s neurology tragic. Again, I point out the hypocrisy of the pro-vaccine ND’ers “advocacy”. An enemy of my enemy is not necessarily an ally of autistic folks. While we are all high fiving the obvious, lets not ignore the gigantic turd laid by the subject artist.

  44. #44 K
    March 10, 2009

    Oh, the the photoshop artist also has a quite unique, and I’m sure rather humorous to him use of the word retard here:

    http://hellsnewsstand.blogspot.com/2009/03/celebutard-monthly.html

    That’s the kind of crap that undermines ND when it is ignored. Its indicative too of why I chose to be delisted from the Hub. Somehow autistic self advocacy has become intertwined with this type of ableist “ally” crap-ola.

  45. #45 Anne
    March 10, 2009

    Kent, I understand what you’re saying, but I don’t think that “enemy of my enemy” is an accurate way to look at the intersection of autistic self-advocates and skeptical bloggers. I think of it more as a common interest in one discrete area that affects autistic people.

    I do agree that a number of skeptical bloggers are not allies of autistic people (yet) but, on the other hand, autistic science types have infiltrated their blogs and the skeptics are getting used to them. I’ll bet Orac has changed the way he thinks about autistic people over the years just by having them participate on his blog. Maybe he’s not a good example, though, since he gets branded as an “ND” by association anyway.

    I think you should go ahead and make comments like you just did when you see something that needs to be pointed out like the “retard” thing. Go ahead and call these guys out. Raise their consciousness, as we used to say. I think it’s worth doing, and Daedalus2u can’t do it all by himself.

  46. #46 Joseph
    March 10, 2009

    @K: You’re taking things too personal if you think that someone who agrees with you about one thing should be in general an “ally” to you or your kind. It’s not great if people are ableist, but they are. Basically everybody is ableist one way or another. It’s ingrained in culture.

    It’s reasonable if you expect that Hub members should be allies. But people outside the Hub, why?

    Really, the anti-vaccination issue is a scientific issue. Its relation to autistic self-advocacy is tangential. It’s almost as if I were involved in discussions about global warming (which I have been) and expected those who agree with me about AGW to also be mindful of autistic rights and disability politics. It would be a totally unrealistic expectation.

    The same applies to the Brian Deer thing. Now, I didn’t like what he said either, and I told him. But you shouldn’t expect him to be an “ally.” He doesn’t have to be.

  47. #47 Anne
    March 10, 2009

    Jake Crosby, I liked Clay’s comment to you, and I think he gave you some great non-medical advice. In fact, it’s great advice for me, too, even though I’m a neurotypical lady of a certain age rather than an autistic young man.

  48. #48 Antaeus Feldspar
    March 10, 2009

    Orac,

    I like how you make fun of the Indigo Movement while linking to a site that apparently supports neurodiversity. Apparently, one kind of quackery is fine but another isn’t? If you’re a skeptic, shouldn’t you also be skeptical of neurodiversity?

    Orac,
    I notice you link these criticisms to an ND website, shouldn’t a skeptic like yourself also criticize neurodiversity if he is also criticizing the Indigo Movement. You’re a skeptic, right? You’re only skeptical of one kind of ridiculousness but not another?

    Jake, Orac practices what is called “scientific skepticism” or “rational skepticism”, which has to do with distinguishing those claims about factual issues which have strong evidence supporting them from those claims about factual issues which are weak in supporting evidence.

    The Indigo Movement is based on claims about factual issues; the very identifying feature of “indigo children” is the alleged indigo shade of their “auras”. If double-blind experiments were to show that people who see auras can consistently distinguish the auras of “Indigos” from those of “non-Indigos”, that would be supporting evidence for the key claim that there actually is some difference between “Indigos” and “non-Indigos”.

    Sadly, however, there is no supporting evidence for the claim that auras have any reality at all outside of the mind of the observer, let alone for the claim that people with auras of a particular color have some special gifts or abilities outside of the mind of the observer.

    Neurodiversity, by contrast, is not a claim about factual issues but a way of looking at the factual issues that no one disputes. No one disputes that people who have autism and those who have Asperger’s are different from those who do not have these conditions. But some people look at those with autism/Asperger’s as “abnormal” and those without as “normal”. Those who favor the neurodiversity approach, however, see all three kinds of people as “normal” — quite different, yes, but not “abnormal”. Since this is a value judgment, and not a claim about factual issues, there is nothing there for a rational skeptic to be skeptical of.

  49. #49 Clay
    March 11, 2009

    Thank you, to Daniel J. Andrews and Anne, for your endorsements of my advice. I hope Jake reads it, and responds.

  50. #50 Joseph
    March 11, 2009

    Those who favor the neurodiversity approach, however, see all three kinds of people as “normal” — quite different, yes, but not “abnormal”

    Small correction here. Those who favor neurodiversity are not very likely to say autistic people are “normal” nor do they usually believe autistic people or normal or near normal, or anything like that. That type of wording in general is not used. Those who are not autistic are referred to as “non-autistic” or “neurotypical” (which don’t mean exactly the same thing, and it’s questionable whether anyone can really be called “neurotypical.”)

  51. #51 daedalus2u
    March 11, 2009

    My view of ASDs, NTs, ND, what is normal and what that means is complex.

    I heard a discussion on NPR last night where someone used a German expression which he translated as “if you will not be my brother, I will bash your skull in”. In effect saying that I am willing to relate to you as an equal, but only on my own terms and will kill you if you don’t agree.

    I see this as completely analogous to what the curebie community is (in effect) saying (by their actions) to the ASD community and to the ND community. People with ASDs can be related to as being fully human and deserving of human rights only after they have become NT. Anyone who is not NT is not relatable to, and is worthy of having their head bashed in. Anyone who opposes trying to convert ASDs to NTs (i.e. NDs) is worse because they are actively trying to deny ASDs the opportunity to be related to as human, and are therefore compelling the curebie community to continue to hate ASDs and compel them to bash ASD heads in, and so it is necessary to attack the NDs in defense of ASDs.

    Xenophobia is a common NT trait. As a common trait, it can be considered a “normal” trait. “Normal” traits are not necessarily traits that are beneficial. My understanding of xenophobia is that it is analogous to the mythic green-beard effect, which compels people with the green-beard gene to kill all individuals without a green-beard.

    My hypothesis is that when curebies use the term “normal”, what they mean is sufficiently like me such that that xenophobia is not invoked. That is a very self-referential definition, a definition based on “truthiness”. Not a definition based on any logic or scientific understanding, but based on a “gut feeling”.

    http://en.wikipedia.org/wiki/Truthiness

    I recommend that people try to understand the meaning of truthiness because it really explains a great deal about how the curebie community and the anti-vax communities, the creationist community and the CAM communities think. They actually don’t think, they feel. They don’t have an intellectual understanding of their ideas, they don’t have an understanding of those ideas based on facts and logic, they have feelings about those ideas. They don’t have the intellectual honesty or the capacity to let their intellectual capacities “trump” their feelings. This is the fundamental problem in trying to deal with such people. They don’t have the intellectual honesty to do real science; they can only do cargo-cult science. They are also (for the most part) completely unable to distinguish between what is real science and what is cargo-cult science. I think that is why many of the CAM practitioners support each other, even though their different CAM modalities are completely incompatible. I think that is why many religions support each other too, even though they are completely incompatible.

  52. #52 notmercury
    March 11, 2009

    The class act that is Jenny McCarthy. [WARNING - NOT EVEN CLOSE TO BEING SAFE FOR WORK]
    http://www.youtube.com/watch?v=BwkAhmzUVgs

  53. #53 Antaeus Feldspar
    March 12, 2009

    Small correction here. Those who favor neurodiversity are not very likely to say autistic people are “normal” nor do they usually believe autistic people or normal or near normal, or anything like that. That type of wording in general is not used. Those who are not autistic are referred to as “non-autistic” or “neurotypical” (which don’t mean exactly the same thing, and it’s questionable whether anyone can really be called “neurotypical.”)

    I was trying to communicate the basic idea of neurodiversity to a young man who clearly has either very little knowledge of the concept or very little experience to give him context for that concept. If you think you can communicate the concept to him more clearly than I did, go ahead, but I have to say that your “explanation” confused me.

  54. #54 Lucas McCarty
    March 13, 2009

    I suppose Neurodiversity is best explained by inventing a completely new term and then making a comparison.

    Sexualdiversity is a way of interpreting the information we have about sexuality. For example; some people think homosexuals DO have equal rights to heterosexuals because they both have the right *to marry the opposite sex. A person adopting the position of Sexualdiversity rejects this totally and says it most certainly is not an example of equal rights: it’s a position which in fact only permits such rights when a person is de facto a heterosexual.

    Likewise, you could say wheelchair-users have equal access rights to the same buildings as anyone else, but someone who is serious about disability rights rejects the suggestion that providing the means for them to access buildings in the form of a ramp is ‘special rights’ or ‘extra rights’. Even elevators intended for wheelchair-users only are not ‘extras’ for them.

    Neurodiversity simply takes these assumptions an extrapolates them to neurological conditions. Like sexuality and physical disability rights, the arguments against are always the same: the differential needs are framed as unreasonable, expensive, bizarre and a waste of time. The individuals concerned are not spoken off very nicely either.

  55. #55 Jake Crosby
    March 13, 2009

    Orac,
    Adam Bly is a young, ambitious corporate CEO who was a prodigy as a kid and started up a magazine when he was only 19(one year younger than me). Now as an adult, he’s reaching out to other corporate CEOs to get his media group promoted, just as any good media outlet would do to survive. And you, Orac, seem to be a part of his promotional campaign. Pharmaceutical corporate CEOs must love Bly after seeing this site and reading posts from a blogger with a strong, loyal readership from the neurodiversosphere.

    HCN,
    I would, accept that MMR/thimerosal deaths often get written off as SIDS or Shaking Baby Syndrome in which the parents are blamed and get thrown in jail,like Alan Yurko.
    Excluding studies solely on the basis of journal prejudice is ad hom, I could say just the same thing about those that get funding from big pharma. If you will not believe doctors who say their is a link between c ertain vaccines and autism because they get paid by prosecuting lawyers then you should discount those who say there is none for working for the plaintiffs such as the government and the pharmaceutical companies themselves. Oh wait I forgot, the government exonerates pharmaceutical companies from liability on one of their most lucrative products, replacing it with a kangaroo court where the government is liable while having the right to exonerate itself.
    I am very sorry to hear of your immunocompromised child and his seizures. I was tested for them when I was young. Your description of him reminds me of Katie Wright’s child whom she describes as having the immune system akin to a late-stage AIDS patient.

    Orac said,
    “You can hate my guts, call me an idiot, cuss me out, whatever, and I’ll let you have your say.”
    That’s just the type of mentality that allowed Michael Savage to stay on the air!
    also:
    “Of course, you have to be able to deal with my skeptical readers, who are more than capable of dealing with the likes of you without any intervention on my part.”
    They post a lot, but they really take up posting space more than anything else.
    You still didn’t answer my question about Menactra.

    Rjaye,
    I was not “fed” anything. I saw a FOX5NY news report four years ago, didn’t discuss it with anybody until my mother mentioned chelation to me last year, started talking to others about it and then became outspoken about the issue.
    “that he is a real expert and he was upfront about all of his activities”
    Claiming that a child can withstand up to 100,000 vaccines at once and never mentioning that he personally made between 29-44 million dollars off RotaTeq? Yeah, he’s an “expert” alright. :S That is what I’d call “lying immensely to scam vulnerable families with pseudo-science.” The closest he came to divulging his vaccine royalties was bragging that they were like winning the lottery. What kind of greedy, selfish person would say that?
    I never suggested I’d be like Adam Bly, nor do I want to be. What I said was that basically no autistic person I know of would be developmentally capable of carrying out scientific research at the age of sixteen. Meanwhile, this very high-functioning NT whose probably never had a speech delay in his life, never had to fight his way out of special ed, never struggled socially, and never had meltdowns is now trying to get PR points to make some cash and boost his ego since his prodigy days are over. Obviously, his strategy is to start “ScienceBlogs” which would include someone who previously had very low readership in the blogosphere who would personally attack any doctor whose tried helping autistic people beyond superficial and abusive ABA and dangerous anti-psychotics. Bly should be ashamed of himself.
    You are totally unfamiliar with the ND movement. The point of neurodiversity is to counter the consensus that autism is a disorder and ultimately get it de-medicalized, like anorexics who deny help for their mental problem. Your claim of “respect” for severe ASDs is ridiculous. Most of the AoA team is made up of parents of children w/ severe ASDs.Your mention of polio is a straw man argument by the way.
    No, for your information, I don’t “pity” myself or think I’m a “waste of humanity,” just because of my condition, it does not define who we are. As an autistic person, I have a right to express my experiences without anyone else speaking for me, including you, and find it offensive that an NT such as Adam Bly has taken on the issue of autism on his blog. He’s never grown up facing any of the challenges I have and was practically born with a silver spoon in his mouth. I’d like to see how far he’d make it if he were stricken with my disorder. Just to give you an idea of how different things might be: I knew an autistic guy whose non-autistic father graduated from Yale, but never even graduated from college himself. He was almost thirty last I spoke to him.
    See my still unanswered question to Orac above if you think I’m so “anti-vax.”

    HCN,

    The children you claim Dan Olmsted “missed” in fact have Fragile X, a genetic condition and a whole other spectrum of disorders separate from autism which include phsyical abnormalities. Phenotypically, autistic people look like everybody else.

    If the CDC did basic calculations of the safety levels of ethylmercury in shots, assuming lack of immunization is the reason behind this, the pertussis comeback you complain
    about wouldn’t have happened. It’s like blaming Andrew Wakefield for increased measles rates when the NHS is too cheap to provide seperate measles, mumps and rubella vaccines.

    Joseph,
    The fact that neurodiversity proponents such as yourself claim that autism is not a problem and calls for a de-medicalization of it as such is related to causation and medicine. It contrasts with the accepted mainstream view that all autism spectrum disorders are listed as such in the DSM-IV and ICB-10. In that sense, it very much goes against what the scientific consensus or medical establishment thinks. Not surprisingly, a so-called “Science Blogger,” rather than labeling this as “quackery” has instead embraced it. If he did, most of his readership, who are mostly pro-ND autistic people, would turn on him. He’d lose the base of his support and he’d be kicked back to blogspot with all the other random bloggers. He would inflict irreversable harm to his only hobby.
    “It’s like saying that feminism should be criticized by scientific skeptics.”
    If being a woman is on par with having a mental disorder. You might want to watch what you say, this can come across as sexist.

    Vindaloo said,
    “Look, if you’re angry about neurodiversity then so be it.”
    Except that by allying yourself with them uncritically like Orac and other skeptical bloggers, you do not make yourself look very convincing.
    And:
    “…(I)just don’t have any science to back up your steadfast and evidence-free beliefs about either autism or vaccines. You’re throwing rocks at the moon.”
    Speak for yourself.

    Clay said,
    “Son, from your 16 yr old vantage point, it may have seemed a possible explanation, and you jumped at it”
    Reread my article, I did not talk about it with anybody for three years. That’s hardly “jumping” at anything.

    and:
    “There is no blame for being born autistic”
    I know, I’m well aware of my mother’s amalgam fillings.
    and:
    “but if you want to blame God, then go right ahead”
    I’m actually an atheist (no offense to anybody), but thanks for the advice.
    and:
    “but they don’t tell the whole truth, such as how they will profit by “converting” you.”
    Like Paul Offit and his $29 million(minimum) vaccine royalties?

    Vindaloo said,
    “I feel both sorry for the young man and anger at Handley/Best/Blaxill/Geiers/Erb/Antivax Dawn for playing the kid.”
    The first three you mention are parents of autistic children who regret getting their children certain vaccines, so I doubt they would want to live with the burden that their childrens’ autism could have been prevented. I ask Dr. Geier questions every bit as critical as I ask of all of you. I’ve never heard of the last two you names you mention. FYI, John Best has nothing to do with Age of Autism.

    Clay,
    You tell me to read up on early, religious-based anti-vaccination movements of the nineteenth century on wikipeida. I will if you read about the much more recent, previous scandal relating to the MMR:

    From the UK: The Betrayal of a Nation’s Children

    Two weeks ago, the Director of vaccine policy at the UK Department of Health, Professor David Salisbury, moved to stifle all criticism of himself and the Department’s policies by letters warning of writs for defamation, against a number of vaccine damage campaign websites. These legal letters asked that websites take down Martin Walker’s last essay, To Encourage the Others. In the writ Salisbury tried to distance himself from the Joint Committee on Vaccination and Immunisation (JCVI).

    In two weeks time, in April of this year, vaccination policy in Britain will change radically when it is handed over to a committee appointed by a quango that consists almost entirely of drug company insiders. In this new statute, it will become compulsory for the government to enact the wishes of the Joint Committee on Vaccination and Immunisation (JCVI). From April onwards the New Labour government will abdicate all responsibility for vaccine policy, mass vaccination programmes, licensing, deaths and adverse reactions to the pharmaceutical industry.

    To understand this massive gift to Big Pharma, US observers in particular should bear in mind that in Britain, conditions have never been so favourable nor citizens’ criticisms of the pharmaceutical companies so acute as they are at the moment. So powerful is Big Pharma in little Britain, that there has never been a single successful court action against a pharmaceutical company; that all British Vioxx and MMR claimants were denied legal aid; for two years now, Dr Andrew Wakefield and two other doctors have been on trial before the General Medical Council, for suggesting that MMR might cause inflammatory bowel disease and Autistic Spectrum Disorders; and as 1,340 adverse reactions are announced following the Cervarix mass vaccination, ongoing for=2 0six months, the drug company-funded regulators have told the British people, that they can live with these minor events.

    Between 1988 and 1992 the British government, in fear of putting off parents from having their children vaccinated and endangering pharmaceutical profits, neither acted upon, nor made public, information about deaths and adverse reactions that affected thousands of children given the mumps, measles and rubella (MMR) vaccination. The Urabe Farrago, Martin Walker’s latest essay, takes the expose of vaccine politics in Britain further than ever before, describing a state of near regulatory anarchy in the licensing and administration by the government of MMR vaccination.
    http://www.ageofautism.com/2009/03/from-the-uk-the-betrayal-of-a-nations-children.html#more

    Anne,
    Or rather, it WOULD have been good advice had I not already known about my prenatal exposure from mercury emitted from amalgams. Mercury exposure for me at least began from the moment of conception. I’ve had noise sensitivities as early as three weeks to the rustling of plastic bags of all things, so Clay might actually be right.

    Mr. Feldspar,
    Of course people dispute the views of neurodiversity, it’s highly controversial. To claim such a condition that’s been growing exponentially in recent years is natural and should be de-medicalized goes against the beliefs of the scientific consensus, and would fit in with what Orac would call “quackery.” Very many people, even people in public health who deny their own institution’s role in this epidemic would dispute neurodiversity. Orac doesn’t.

    Orac, you’ve not answered my question about Menactra, I’m very disappointed with you. I thought you knew these things, instead I had to go to the health center at my college and ask the people there myself, and wait for them to give me an answer. For a self-styled vaccine defender such as yourself, you really don’t know a whole lot about the product you’re defending. What’s even funnier is that I got Menactra in 2007, well after I learned about the harm thimerosal can inflict. Pretty “anti-vax,” don’t you think?

    Anyway guys, it’s been fun, but I can’t let this divert attention away from my studies. Thanks for your responses. With the exception of the “anti-vax” straw men and insults, I appreciate them.

  56. #56 Joseph C.
    March 13, 2009

    Like Paul Offit and his $29 million(minimum) vaccine royalties?

    You seem to suggest that Dr. Offit’s compensation constitutes a rational argument against him. Bzzt. Bzzt. Wrong-O. Dr. Offit spent an extraordinarily long time developing a safe and effect vaccine. Longer than you’ve been alive, in fact. You’ll never do anything as useful in your life. Count on it.

  57. #57 Joseph
    March 14, 2009

    @Jake: You get called on your nonsense, shown that you don’t know what the heck you’re talking about, but then keep coming back for more. You’re persistent, I’ll give you that.

    I’ll only take part of what was addressed to me.

    Not surprisingly, a so-called “Science Blogger,” rather than labeling this as “quackery” has instead embraced it. If he did, most of his readership, who are mostly pro-ND autistic people, would turn on him. He’d lose the base of his support and he’d be kicked back to blogspot with all the other random bloggers.

    Quackery is a term that describes unproven or fraudulent medical practices. For example, someone who claims Lupron or Nicotine can cure autism is practicing quackery. No question. If Neurodiversity were promoting unproven “cures” of autism, it would be guilty of quackery as well, and I’d be the first to call them on it.

    Now, the part about Orac depending on neurodiversity advocates as his audience is complete nonsense. I understand Orac has in the order of hundreds of thousands unique visitors a month. Yes, he has an order of magnitude more visitors than AoA.

    Jake also showed up at my blog after I posted about a completely erroneous article that he wrote for AoA. Then in trying to rebutt my criticism, he posted yet more errors. A couple of my readers came and called him on his nonsense as well.

    I sincerely hope the young man stops regurgitating the claptrap he’s overheard at AoA and comes to realize he’s unfortunately gotten involved with a bunch of cranks who can’t get facts right and who are unable to interpret science.

  58. #58 Jake Crosby
    March 14, 2009

    “If Neurodiversity were promoting unproven “cures” of autism, it would be guilty of quackery as well, and I’d be the first to call them on it.”

    It’s advocating against any kind of cure at all, whether it’s unproven or not, on the basis of false and unproven beliefs about autism and against the wishes of doctors and many autistic people, which is what I would call quackery. You still have yet to call them on that.

  59. #59 Joseph
    March 14, 2009

    It’s advocating against any kind of cure at all, whether it’s unproven or not, on the basis of false and unproven beliefs about autism and against the wishes of doctors and many autistic people, which is what I would call quackery. You still have yet to call them on that.

    When there’s a proven cure of autism, which is ethical (as an example, “shock treatment” would not be ethical), let me know. Whatever neurodiversity advocates believe now, if there ever is a real cure, proven to work, which doesn’t result in more problems than it solves, the vast majority of neurodiversity advocates will not likely be opposed to it.

    If you think neurodiversity advocates have factually incorrect beliefs, you should engage them and provide evidence that their beliefs are in fact erroneous. You will note that the blogs owned by neurodiversity advocates generally don’t censor comments like AoA does.

  60. #60 Jake Crosby
    March 14, 2009

    Neurodiversity is an idea which asserts that atypical (neurodivergent) neurological development is a normal human difference that is to be recognized and respected as any other human variation. This belief is neither cure-friendly nor factually correct.

    “You will note that the blogs owned by neurodiversity advocates generally don’t censor comments like AoA does.”

    because we don’t follow this sort of mentality:

    “You can hate my guts, call me an idiot, cuss me out, whatever, and I’ll let you have your say.”

  61. #61 LW
    March 14, 2009

    “because we don’t follow this sort of mentality:”

    And you’re proud of that?

  62. #62 Militant Agnostic
    March 14, 2009

    Jake – I think you will find that many of the regulars here have had polite thoughtful comments that did not call people idiots or contain profanity censored at AofA.

  63. #63 Joseph
    March 14, 2009

    Neurodiversity is an idea which asserts that atypical (neurodivergent) neurological development is a normal human difference that is to be recognized and respected as any other human variation.

    Scary philosophy, right? (I don’t know why they have the word ‘normal’ in the definition you copied from Wikipedia.)

    This belief is neither cure-friendly nor factually correct.

    It might not be “cure-friendly.” The same is true of gay rights. It’s not “friendly” towards a cure for homosexuality. Nevertheless, neurodiversity advocates generally stay out of the way of scientists who medically investigate neurodiversities (unless they are quacks.)

    Humor me, though. How is it not factually correct?

  64. #64 Lucas McCarty
    March 14, 2009

    Mr Crosby, those advocating a cure never cease to misrepresent what Autism is.

    Currently the science is at a stage where there are some good ideas, but a general admission that *we do not actually know what Autism is*. The ideas supported with evidence, such as the Extreme Male Brain theory and Different Perception theory, do not support claims that a cure is necessary or even desirable. None of them. Repeatedly however, those advocating a cure use descriptions of Autism and Autistics which conform to *no evidence-based theory* of Autism in order to raise funds or awareness. The ‘normal person trapped in a shell’ hypothesis is the most used but is almost creationist-like in it’s simplistic misrepresentation of what is known about Autistic perception and thought processes.

    At this moment in time, there is no single supported theory about what Autism is: we do not know what Autism is. But still, the majority of Autism organisations in North America(who pro-actively exclude Autistic people from any significant roles) declare loudly what the only solution must be. If they already have the answers, what is the question?

    This is an accurate account to the best of my knowledge of the situation curbies are in and how they behave. In this light, I gladly welcome any question of my position as that of a neurodiversity proponent: nothing I could possibly say, no matter how bad, could make me seem as unreasonable as the other side on this matter.

    Do I actually need to point out to Mr Crosby that what makes humans different from animals relies heavily on how our neurology diversified? I don’t suppose there is a single animal with a more diverse range of neurologies, behaviours and psychology than humans. It’s our advantage and it is normal for our species. Not always good, not always bad, but it’s normal.

  65. #65 Dedj
    March 14, 2009

    It’s only ‘not factualy correct’ if one asserts that it is a ‘fact’ that ‘normal’ equates with ‘not different’.

    As neurodiversity challenges (as physiodiversoty challenges the assumption that people with diabeties or asthma are ‘not normal’) that ‘fact’ by indicating that ‘normal’ is an artifact of consensus and not extant outside of a social context which allows for the delineation, using that ‘fact’ to argue against neurodiversity merely indicates that the challenger is insufficiently informed about neurodiversity or how ‘normal’ is defined.

    ND challenges the assumptions over what ‘normal’ versus ‘not normal’ signifies as either a proscriptive or descriptive label. To debate ‘facts’ about words indicates that you haven’t even grasped what level the debate is at, much less provided a counterpoint.

    Jake Crosby also makes another bizarre point here:

    “”It’s like saying that feminism should be criticized by scientific skeptics.”
    If being a woman is on par with having a mental disorder. You might want to watch what you say, this can come across as sexist.”"

    Being a woman *was* considered a mental disorder until comparativly recently, with women being considered intrinsically incapable of making rational decisions. Even early moral theory held that one had to be a man in order to have the potential for moral action. Feminism is exactly equitable to ND in this case.

  66. #66 HCN
    March 14, 2009

    Young Master Crosby said “I would, accept that MMR/thimerosal deaths often get written off as SIDS or Shaking Baby Syndrome in which the parents are blamed and get thrown in jail,like Alan Yurko.”

    You are actually activating for a known criminal who murdered his girlfriend’s baby? He was still in jail when the child was conceived.

    What kind of child hating loser are you?

    By the way, Yurko was an anti-vax loon cause, until he landed himself in jail again. Read up on it:
    http://www.ratbags.com/rsoles/comment/yurko.htm

    By the way when I ask for real actual factual evidence that the MMR and DTaP are worse than measles, mumps, rubella, diphtheria, tetanus and pertussis — I want papers that I can find in my local medical school library (or your local college library, try spending time there, you might learn something). Not whiny made up stories about SIDS (which by the way, has decreased considerably in the last few years), and excuses to get criminals out of jail for shaking babies to death.

    Try again.

  67. #67 HCN
    March 14, 2009

    More on baby murderer Alan Yurko:
    http://www.ratbags.com/rsoles/comment/yurko1.htm

    CASE INFORMATION
    Number: CR-05-473467-G
    Caption: THE STATE OF OHIO VS ALLAN YURKO
    Status: CASE OPEN
    Judge Name: LILLIAN J GREENE
    PO Name: N/A
    Next Event: PRE TRIAL CONFERENCE SET FOR 01/11/2006 AT 09:00 AM IN ROOM 16C JUSTICE CENTER
    Arrested: CLEVELAND PD

    DEFENDANT INFORMATION
    Number: 96328
    Name: ALLAN R YURKO
    Status: DEFN JAIL
    Date of Birth: 12/11/1969
    Race: WHITE
    Sex: MALE

    BOND INFORMATION
    Bond Number 482731
    Amount 2500
    Type CASH/SURETY/PROP.
    Date Set 12/16/2005

    ACTIONS
    Event Date Event
    09/21/2005 ARRESTED
    11/17/2005 INDICTED ORIGINAL
    12/01/2005 CAPIAS
    12/14/2005 JAIL
    12/16/2005 ARRAIGNED

    CHARGES
    Statute Description
    2925.11 DRUG POSSESSION

  68. #68 Joseph
    March 14, 2009

    Shaking Baby Syndrome in which the parents are blamed and get thrown in jail,like Alan Yurko.

    That’s just sick, Crosby. The baby had broken ribs!

    I know you think it sucks to be you. I’m inclined to agree at this point.

  69. #69 Chris
    March 15, 2009

    It looks like Jake Crosby has swallowed all the lies fed to him by the AoA infectious disease promotion squad hook, line and sinker. Perhaps in time as normal development takes hold he will learn to think for himself and get an open mind, and also learn how to distinguish good information versus made up stuff.

    I would suggest one way to do this is to only use the computer for actual school work (stay away from AoA, here, and any online networking site). Actually attend each class and do the homework. Since it is obvious that he is not as learning disabled as my son, it is a shame that he is throwing away any opportunities to learn (like his statistics class).

  70. #70 Kent Adams
    March 15, 2009

    It is my contention that Mr. Crosby does not have an Autistic Spectrum Disorder as others proclaiming online have. Some of Mr. Crosby’s critics eschew an official diagnosis themselves.. Mr. Crosy attends Brandeis University, without supports. I’ve been told by others claiming an online diagnosis that they did not need a support system. They were able to navigate the social environment while attending a university with no problems, did not have executive functioning issues while navigating course criteria etc. I had terrible problems with these things. I did manage to achieve academic success, but with considerable effort and hardship. I have a BS and a MBA from UNC Chapel Hill and a PhD from Duke University. But it was an agonizing process. An ASD diagnosis in adulthood is a difficult and lengthy process and I feel some are passing themselves off as having an ASD when they do not and cheapening the struggles I and others have to face. Of course this will be denied and those posting here know of whom I’m speaking of. You can cling to your dogma, but it is obvious to me, from my own experience as well as my support group that what you ain’t autistic. I support ND, but I don’t support fakers and pretenders who eschew an official diagnosis and claim no issues with sensory, social and executive functioning as being autistic.

    It disturbs me that I supported these folks for so long and I come to find out that their “autism” ain’t anywhere near mine, and I’m considered extremely “high functioning”. Somehow acknowledging my “deficits” is considered off the “party line”. My position is that one can acknowledge their reality, with a medical/social model neutrality, and still be ND. Those that deny they have social, executive and sensory issues aren’t autistic. The diagnosis is being cheapened by this crowd as they spend all their writing energies on subjects that have nothing to do with the realities that autistic people face throughout their lives. If your only concern for autistic people is causation and supporting a pro or anti-vaccination position, you don’t understand autistic people and what we face everyday (you only understand childhood controversies). Stop spending wasteful hours creating charts and statistics and start focusing on accommodations, education, opportunity, independent living, legal protections, and discrimination in various societal settings, etc. Acknowledge that there is an added burden on those of us lower on the spectrum!

    Here is some dirty laundry for you folks. The Seidel’s ain’t autistic allies in my view, despite their efforts to bring down some of quackery surrounding autism treatments. Kathleen runs a website which profits off the backs of autistic people with Amazon Associate advertising to books and resources on quackery. A true ally wouldn’t have a click for dollars entry on their website that promotes false assumptions of autistic people. I’m sure I’ll be pummeled for that one as the faux autistics come to her support. These same “autistics” that never needed accommodations in academia because they did not have sensory, executive functioning or social impairments and were perfectly capable of navigating their academic careers.

    The Autism Hub is not exactly autism friendly. Parents drugging their children with anti-psychotics, inclusion of an individual that defends the methods of Matthew Israel and Dave Seidel refusing to even entertain an autistic as the administrator of the Autism Hub. Moderation of only autistic members (not very autie communication style friendly) on the Hub’s private email list. Amanda Baggs holding other autistic members hostage to her views. I also doubt her diagnosis. What person becomes autistic in their teen years? How does someone become “severely” autistic in their teen years? Autism begins at birth, unless you believe in fairies. I, a person with AS, let alone non-verbal “severe” autism, struggled in school from the beginning. No one would have thought I was qualified to attend a college in my teen years. Good grief.

    The over-representation of female “autistics” to a statistical absurdity. Male autistic voices moderated to the point where one believes they have to be neutered in order to be accepted. If your autistic, you must be a certain type of autistic in order to be accepted by the Hub administrator. You can be an aspie supremist. You can be a homophobe. You can even be a racist. But don’t dare to be an autistic that calls to task Hub members supporting (even tacitly) Matthew Israel. I once asked the Hub to support blogging against the recertification of Israel’s Judge Rotenberg Center. Not a single member blog against recertification! Go to the Hub’s blogs and look at how many fellow member parents comment on “autistic” member’s blogs. You won’t find many. Everyone is interested in only fighting the public’s perception of autism. That’s fine, but no one wants to get down and do the really hard stuff like lobby legislatures for change. Why? Because they would rather talk about themselves and their lives than do the hard work of lobbying.

    I expect the AoA crowd to ignore the issues of autistic folks and to denigrate autistic lives. I didn’t expect the Autism Hub to do it but they do everyday and when you point this out to the Administrator, he asks you to leave, which I gladly did.

    I posted this here because I expect the “perpetrators of distraction” to follow comments here and I’m addressing these comments to them. Get off your asses and start writing about discrimination, housing, education, employment and supports. Put down this crap masquerading as autism advocacy.

  71. #71 Joseph
    March 16, 2009

    @Kent: Get off your high horse and stop telling people what they should do. That’s absolutely ridiculous. If someone wants to do autism advocacy, it’s their right to do so. If they want to discuss anti-vaccination or the economy or global warming all day long, it’s their right to do so as well.

  72. #72 Lucas McCarty
    March 16, 2009

    Projection much Mr Adams?

  73. #73 Joseph
    March 16, 2009

    What’s sad is that Kent seems to think he’s engaging in autistic advocacy when he undiagnoses people over the internet. In effect, he’s engaging in exactly the opposite.

    He’s even tried to undiagnose Donna Williams for Christ’s sake. Is it because she’s female? I bet. All this at the same time he’s at the receiving end of the same sorts of over-the-internet assessments.

  74. #74 Kent
    March 16, 2009

    “He’s even tried to undiagnose Donna Williams for Christ’s sake. ”

    I keep good company in my skepticism of Ms. Williams. I agree with Fred Volkmar (Yale University Professor of Psychiatry and DSM committee member, chair of it I think http://www.med.yale.edu/chldstdy/faculty/volkmar.html) on Donna Williams. Let’s just say she feels the same about me. That’s ok with me. Donna has certainly gone on forums and said the same about me. I have comfort in knowledge so it doesn’t bother me if someone questions my diagnosis and because I don’t have a monetary motivation to sue others over my diagnosis, I won’t be engaging in that behavior. I have nothing to prove. Donna on the other has threatened to sue me for questioning her’s. I can certainly understand her response. She has a lot of $ to lose if she is faking it.

    “What’s sad is that Kent seems to think he’s engaging in autistic advocacy when he undiagnoses people over the internet. In effect, he’s engaging in exactly the opposite.”

    It’s not sad Joseph. True, I use to believe as you do. But my thinking on this has evolved as I’ve been presented with additional evidence. My beliefs are not dogmatic and I’m willing to listen to convincing evidence. However, I don’t feel supporting what I believe to be an Al Jolsen type expression of autism to be in the best interest of autistic people nor of neurodiversity. “Severe” autism, like my son’s, is not something that suddenly appears in adulthood nor in the teen years. However, if you have evidence that this is possible (severe autism occurring in the late 20′s or in the teen years, I’m certainly capable and most willing to change my views on this.

    Yes, I do think that what I described as good advocacy (fighting for accommodations, expanded educational opportunities, vocational training, expanding living arrangements, legal protections and acceptance) is important for autistic people. Its certainly not the only way, but I’ve found it effective locally. No adult in my support group, which is my demographic I rely on for feedback, would think that talking about vaccinations endlessly does them one bit of good. Come to my group and explain to them why they need to think differently and why spending so much energy and advocacy “capital” on causation will positively impact their lives. Most are just struggling to survive and gain independence. It was after joining this group that I realized how silly these views were that I once held (namely the over-weighting of causation as an issue). Being presented with such counter-evidence changed my thinking. It would do you a great deal of good to get this viewpoint rather than the echo-chamber of the Hub. Neurodiversity should be more than what is routinely served on some blogs on the Hub. In my opinion, the Hub is destroying that very idea by being so strongly linked to vaccination issues and its surrounding cabal of silliness. There are some blogs on the Hub I think are great. I don’t want to give the impression that I think its all bad. But I think it could be better.

  75. #75 Kev
    March 16, 2009

    Kent, all you have to do if you don’t think the Hub is what it should be is start your own. Or you could just carry on moaning like a child. Your call.

  76. #76 Joseph
    March 16, 2009

    “Severe” autism, like my son’s, is not something that suddenly appears in adulthood nor in the teen years. However, if you have evidence that this is possible (severe autism occurring in the late 20′s or in the teen years, I’m certainly capable and most willing to change my views on this.

    @Kent: First of all, I’m surprised you describe your son as having “severe” autism. I’ve seen videos of your son, and I recall, for example, Erik Nanstiel (I think it was) saying that your son doesn’t even appear classically autistic. Certainly, your son is by no means more “severe” than my own son, from what I’ve seen.

    Second, yes, some autistic people do report that they become “more autistic” in adulthood. They call that a “regression.” It doesn’t mean they became autistic in adulthood. By definition, they couldn’t be autistic if that’s the case.

    No adult in my support group, which is my demographic I rely on for feedback, would think that talking about vaccinations endlessly does them one bit of good.

    I don’t dispute that. They absolutely shouldn’t talk about vaccinations endlessly if they have better things to do. (Unless anti-vaccination happens to be one of their perseverations; in that case, I assume you would not discourage it.)

    Come to my group and explain to them why they need to think differently and why spending so much energy and advocacy “capital” on causation will positively impact their lives.

    Who says they need to think differently? Besides, I’m not you to go around telling people what they should do and think.

    I fail to see that “advocacy capital” is being spent on causation. That assumes that the people who discuss causation could be doing advocacy instead. If I were good at doing advocacy, I’d be doing advocacy. As it is, I prefer to do whatever the heck it is that I decide to do with my time. And FYI, I have perseverations that have to do with autism and perseverations that don’t have to do with autism. I’m certainly not going to change my perseverations based on the wishes of Kent Adams.

    I think there are people who are producing good results with their advocacy, e.g. ASAN. They should be encouraged. You, on the other hand, simply appear to be smearing certain autistics you don’t like or disagree with. That’s your accomplishment in “autistic advocacy.”

  77. #77 Kent
    March 16, 2009

    “Or you could just carry on moaning like a child. Your call.”

    Not the first time nor the last time someone will dismiss me as being “childlike”. But, neither of our children will benefit as adults from this silliness on vaccines. It won’t protect them from abuse by institutions, it won’t expand housing opportunities, it won’t expand educational and employment opportunities and it won’t expand legal protections. Vaccine talk and arguments won’t inform the public of the real hurdles faced by the vast majority of autistics and that, that, is what is sad. Its a great platform, but it should move on and forward rather than cling to its past.

  78. #78 Kent
    March 16, 2009

    “@Kent: First of all, I’m surprised you describe your son as having “severe” autism. I’ve seen videos of your son, and I recall, for example, Erik Nanstiel (I think it was) saying that your son doesn’t even appear classically autistic. Certainly, your son is by no means more “severe” than my own son, from what I’ve seen.”

    Joseph, I’m an expert on my 6 year old son, not you nor Erik Nanstiel. The both of you should give up on your fascination with him. I’m the only one, besides his other family members, allowed to be fascinated with my son :-) I choose to show my son in ways I think he would be proud of. I choose to give a 3 dimensional view of my son. However, it would be quite easy to demonstrate his bona fide’s if that’s what your interested in. But, I’ll let him make that choice when he gets older. This I can guarantee you though. He won’t receive a college acceptance at 14 and attend university at that tender age.

    “That’s your accomplishment in “autistic advocacy.”

    Well, nearly 2 million video views (including some apparently from you), having one’s work included in MIT lectures, having special education instructors from across the country using my material in inclusion discussions ain’t bad, and getting separate and unequal buildings and entrances removed from a $700 million local bond issuance ain’t bad. However, its not about me. Its about what could be. How we could make a bigger and better impact, IMHO. I could care less about the personalities mentioned upstream in the comments. I’ve never made those comments publicly until now, and I’m sure you would like to make that the issue but it isn’t in so far as what I’d like us to accomplish. I’d like to see things change. Both sides of this issue I feel have hijacked what ND’s true message is and is creating enemies out of potential allies. All you parents just go after each other back and forth instead of trying to find common ground. Let’s see who can throw the most gorilla dust at the other.

  79. #79 Joseph
    March 16, 2009

    Closing thought for Kent in this tangent.

    Just as you undiagnose autistics at will because they are not representative, in your view, the same could happen to you or your son. Someone could easily point out that you’re a parent, probably married now or in the past, that you have a PhD, that you write and speak in a normal way, and proclaim that you’re not autistic. What if your son happens to be successful in life and is also dismissed as a phony autistic?

    Is that the legacy you want to leave behind with your advocacy?

  80. #80 Kent
    March 16, 2009

    “the same could happen to you or your son.”

    It already has, you just basically did it earlier. It doesn’t bother me. There is strength in knowledge.

    “Someone could easily point out that you’re a parent, probably married now or in the past, that you have a PhD, that you write and speak in a normal way, and proclaim that you’re not autistic.”

    They certainly could and have. Donna Williams among the many luminaries which have done exactly that (source: http://tinyurl.com/da9wes page down to the bottom for Donna’s comments). I’m ok with that, it doesn’t matter. Why should I care?

    What if your son happens to be successful in life and is also dismissed as a phony autistic? Do you mean by being successful that he no longer appears autistic and thus people question his authenticity? If that is what your implying, I don’t think he’ll encounter that issue. However, he has papers from childhood, the distinguishing factor that separates himself from others claiming classic autism. He could have been diagnosed with AD, as he has been with the original DSM criteria. Besides, he already is successful in life to me. My goal is to get others to feel somewhat the same as I do.

    I’m a bit surprised that you would characterize me “smearing” autistics by questioning their adult diagnosis of “severe” autism and then you turn around and do the same with my 6 year old son.

    Is that the legacy you want to leave behind with your advocacy? The legacy I’m leaving him with is to be a better father and advocate for him than mine was to me.

  81. #81 Antaeus Feldspar
    March 16, 2009

    “Mr. Feldspar,
    Of course people dispute the views of neurodiversity, it’s highly controversial. To claim such a condition that’s been growing exponentially in recent years is natural and should be de-medicalized goes against the beliefs of the scientific consensus, and would fit in with what Orac would call “quackery.” Very many people, even people in public health who deny their own institution’s role in this epidemic would dispute neurodiversity. Orac doesn’t.”

    Jake –

    First of all, the idea that autism is “growing exponentially” and constitutes an “epidemic” is not itself a “belief of the scientific consensus.” It does happen to be an article of faith among the antivaccination crowd, which is where you might have developed your mistaken impression that it’s scientific consensus and any dissent from it is therefore scientifically dubious.

    Secondly, while some neurodiversity advocates do believe that autism is a naturally occurring variation, one does not need to hold that belief to be a proponent of neurodiversity — any more than one must believe that all deafness is “natural variation” to believe in “deaf culture”. I have no idea what Orac’s actual position is on neurodiversity is, to be honest, but even if your assertion that he is an advocate of it were correct, your deduction that he must therefore hold some particular belief upon the etiology of autism would still be incorrect.

  82. #82 Kev
    March 17, 2009

    I’m not dismissing you as childlike Kent. I’m saying you’re behaving like a child. You presume to dictate to others what form others advocacy should take and claim yours is the only valid path.

    What I’m saying to you is that if you don’t like the shape of others advocacy, stop whining about it and set up something to express your advocacy beliefs. People can then choose for themselves to listen to you.

  83. #83 Joseph
    March 17, 2009

    However, he has papers from childhood, the distinguishing factor that separates himself from others claiming classic autism.

    @Kent: And how do you suppose adult autistics today could by and large have official papers from childhood, considering that autism was seldom diagnosed a generation ago? Apples and oranges.

    I’m a bit surprised that you would characterize me “smearing” autistics by questioning their adult diagnosis of “severe” autism and then you turn around and do the same with my 6 year old son.

    Except I never did that. Like I told you before, you assume people have said things they never said.

  84. #84 Dedj
    March 17, 2009

    Personally speaking, I don’t have autism papers from my childhood.

    Why? Because my ‘form’ of autism wasn’t recognised then. It didn’t exist until I was 17.

    I could not have been diagnosed, even though my diagnosis is based on symptoms present in my medical, familial and school record.

    Secondly,

    Jake said:

    “Of course people dispute the views of neurodiversity, it’s highly controversial.”

    Neurodiversity isn’t that highly controversial. Both the medical and the health and social care establishements have been moving towards it for some time now. Merely presenting with a diversive trait is no longer legal of ethical grounds for treatment, and anyone who treats atypical traits on anything other than a client-centred, needs led basis is very likely to be breaching thier professional codes and the terms of their professional registration.

    ” To claim such a condition that’s been growing exponentially in recent years is natural and should be de-medicalized goes against the beliefs of the scientific consensus,”

    Well no, there’s no evidence that autism – even iatrogenic autism if it exists – is unnatural. To say that ND wants autism to be de-medicalised is to both misunderstand how the term ‘medicalised’ is interpreted in this context and what the main ND view on it is. ND argues that autistic traits (Contrary to your claim of lack of evidence, the traits are the basis of diagnosis) are not intrinsically impairing, but that the impairment comes from ill-fit between autistic habituation and socio-cultural context.

    To argue that ND -proponents want autism demedicalised is both an untrue and quite insulting over-simplification. There is no basis for claiming or implying ND proponents believe autism confers no disadvantage – especially not when one considers how many are involved in autism services or research.

  85. #85 Kent
    March 17, 2009

    Joseph wrote: “First of all, I’m surprised you describe your son as having “severe” autism. I’ve seen videos of your son, and I recall, for example, Erik Nanstiel (I think it was) saying that your son doesn’t even appear classically autistic. Certainly, your son is by no means more “severe” than my own son, from what I’ve seen.”

    Kent wrote: “you just basically did it earlier”

    Joseph – “Except I never did that. Like I told you before, you assume people have said things they never said.”

    @Joseph – Well Joseph, you felt confident in the same comparison Nanstiel made (doubting his functioning level), that is, placing your personal opinion as to my son’s “severity”.

    Joseph asked: “Kent: And how do you suppose adult autistics today could by and large have official papers from childhood, considering that autism was seldom diagnosed a generation ago? Apples and oranges.”

    I don’t think most could, considering AS wasn’t a diagnosis a generation ago and AS makes up the majority of diagnosed ASD’s. Classic autism though has been a very well known diagnosis in psychiatry for decades. One does not become severely autistic in 2005 at the age of 20 something. Sure there are misdiagnosis, I don’t doubt that.

    I realize that this is a salacious topic for you to continue on this tangent, but it really isn’t serving a good purpose. You’ll continue to write about issues that have nothing to do with advocacy inho, the Hub will continue to be what it is, and I’ll continue to whine about it in a childish manner as Kev put it.

    I want to go back and address something you wrote earlier. You wrote: “that I have perseverations that have to do with autism”

    Can you tell me how this perseverations affects your daily life?

  86. #86 Joseph
    March 17, 2009

    Classic autism though has been a very well known diagnosis in psychiatry for decades.

    Just because it was a known diagnosis for decades, that doesn’t mean it was diagnosed often.

    Lotter (1967) said the prevalence of classic Kanner autism was 4.5 in 10,000. Do you really think 4.5 in 10,000 people were actually diagnosed with autism in the 1960s? They had to locate them and evaluate them in order to do the study.

    You misunderstand autism epidemiology if you think “severe” autism was always recognized as autism.

  87. #87 Kent
    March 17, 2009

    Joseph, I don’t put much weight in a 1967 study.

    “You misunderstand autism epidemiology if you think “severe” autism was always recognized as autism.” I stated earlier that I do believe misdiagnosis occurs. Autism epidemiology means little to me. The particular study you presented has nothing to do with anything that helps autistic people, thus I have little interest in it. Its just gorilla dust.

    Tell me, how does your perserveration affect your daily life?

  88. #88 Joseph
    March 17, 2009

    @Kent: So first you claim that autism was a known diagnosis for decades, so surely “severe” autistics must have gotten recognized as autistic. At the same time, you claim that autism epidemiology doesn’t matter.

    That is completely inconsistent. It means you’re not interested in facts. You just want to make claims without foundation that support your prejudices.

    BTW, don’t question my perseverations. I hate that. Do you go around questioning the perseverations of other autistics?

    “Like trains? So what do you gain by liking trains?” Ridiculous and insulting.

  89. #89 Kent
    March 17, 2009

    Joseph wrote: “Kent: So first you claim that autism was a known diagnosis for decades, so surely “severe” autistics must have gotten recognized as autistic. At the same time, you claim that autism epidemiology doesn’t matter. That is completely inconsistent. It means you’re not interested in facts. You just want to make claims without foundation that support your prejudices.”

    Know, I think I’m very consistent. I think an adult diagnosis in 2005 and in the 1990′s, of “severe” autism is incredible. AD was added to the DSM in 1980, 29 years ago or 3 decades. I think that is consistent. Because you haven’t gone through the process of an official diagnosis in adulthood and all that entails, at least for me in my experience, I don’t think you really understand the presentation of certain things and what they look like and how they affect adults.

    “BTW, don’t question my perseverations. I hate that. Do you go around questioning the perseverations of other autistics?”

    I wasn’t questioning your perserverations. You brought up your preserverations and based on an earlier conversation on another blog about executive functioning and social impairment (and your self professed non impairment in these issues while in school) and the claim that one only has to have no friends to fit an AS diagnosis, I was curious about how perserverations affect you and whether you really know much about it in adulthood. I don’t question people’s individual perserverations. I’m more interested in how it presents in your case. I’m tying to tease out whether you know the difference between an interest and a perserveration.

    “Like trains? So what do you gain by liking trains?” Ridiculous and insulting.”

    Your mixing up too different subjects. One was dealing with my opinion on studies that have nothing to do with advancing a progressive agenda for autistic people and my question to you on how important a perserveration is to you. I make no value judgement on perserverations per se, I just don’t think you know what it is and how it manifests itself in adulthood.

    Me thinks thou dost protest a bit too vigorously to a simple question. It seems perfectly acceptable to you to question my son’s functioning level, which by the way you have no personal knowledge of, but somehow I’m insulting in asking you how important a perserveration is to you and how that perserveration affects you. I was looking for something very distinctive from you without giving away to you what I’m looking for. Consider it a form of “leading the witness”.

    However, seeing that you seem a bit defensive over the subject, I’ll leave it there and move on.

  90. #90 Joseph
    March 17, 2009

    I think an adult diagnosis in 2005 and in the 1990′s, of “severe” autism is incredible.

    Yet, it can be proven that it happens. There are people who get diagnosed with Rett Syndrome when they are elderly, for Christ’s Sake. I would show you data, but I don’t think you’re interested in data at all.

    You brought up your preserverations and based on an earlier conversation on another blog about executive functioning and social impairment (and your self professed non impairment in these issues while in school)

    That is something you fabricated out of thin air. You do that, Kent. I never said I had no impairments in executive functioning or socially. You completely made up a falsehood. Whenever you want to support your prejudices, you make stuff up.

  91. #91 Kent
    March 17, 2009

    “That is something you fabricated out of thin air.”

    That’s a lie. Link your blog. You said you had no need for accommodations while at the University and you managed just fine. If you had no need for accommodations, managed just fine, you have no clinically significant impairments that would warrant an AS diagnosis. There is a reason its called clinically significant.

  92. #92 Joseph
    March 17, 2009

    You said you had no need for accommodations while at the University and you managed just fine.

    The point is that you made up the stuff about me not having executive functioning or social impairments. You can’t jump to conclusions like that and fabricate falsehoods about people. I think you owe me an apology, frankly.

    I said I did not get accomodations and managed. For that matter, you did not get accomodations either, did you? And you got through college. You have a PhD now.

    You will say the difference is that you struggled. Do you think only autistics struggle in college? That’s nonsense. It varies from one person to the next whether your struggle in college. I’d say at least 50% of students struggle in college. There’s no basis for you to blame autism on it.

    Do you want to review the literature on autistics who went to college, or do you want to keep the discussion completely without foundation?

    Either way, I frankly couldn’t care less if you or anyone else thinks I’m autistic or not. It makes a zilch of a difference. I could simply say I’m just another parent.

    But don’t make stuff up about me. Just don’t.

  93. #93 kent
    March 17, 2009

    “I could simply say I’m just another parent.”

    You have no idea of what it is I am even talking about or how its related. I agree with the above statement you made and I won’t apologize for the fact that you did imply what I stated.

    “And you got through college. You have a PhD now”, that’s because I’m a tough son of a bitch that doesn’t give up:-)

    I struggled like hell because of sensory, executive functioning and a serious social impairment, all of which effects every facet of my life, including my time at the university. I don’t blame anything on my autism. Its an argument for accomodations, and if none of these rose to a level that seriously interfered with your ability to function, which is a requirement for a diagnosis, then you don’t have an ASD. An ASD is a lot more than an intense interest and lack of friends.

  94. #94 Joseph
    March 17, 2009

    @Kent: You continue to make stuff up, and you continue to misrepresent. You keep making assumptions about the personal lives of people you’ve never met. I’m still waiting for that apology.

    There’s no criteria for ASD that says you must absolutely have to have struggled academically to be diagnosable.

    To further show you don’t know what you’re talking about, let me quote some excerpts from Kanner (1971) and Kanner (1972), the first adult outcome studies on classic Kanner autistic children.

    Donald T:

    Since receiving his A.B. degree in 1958, he has worked in the local bank as a teller… In College his major was French and he showed a particular aptitude for languages.

    Case #1:

    At 12 years of age, he was at the top of his class in the sixth grade. The school considered him “adjusted,” though he was still looked upon as a “queer fellow.” Thomas’ marks were excellent. He spent one term each in the school’s athletic association, art club, and newspaper, and helped the librarian after school. He also took on a central part in a demonstration during a folk dance. Teachers liked him because of his good academic performance.

    Case #2:

    After finishing high school, Sally was successfully enrolled in a woman’s college, graduating with a B average.

    Case #3:

    Edward finished high school at 19 and wanted to go to college. She attributed this to the pressure he felt to do like the others in the family. Tests were arranged which showed him high on verbal ability and mediocre in performance. It was felt, however, that he could try. Edward went to a state university and took courses in horticulture. He could not master the chemistry, shifted to history and got his B.A. degree at the end of five years. He lived at the dormitory but made no lasting friends.

    Case #4:

    Clarence graduated from high school in June, 1958, with excellent marks and superior achievement test scores. After spending the summer with his parents, he was admitted to a college in Illinois, where he received his B.A. degree in 1962. While there, he “socialized” with a girl for a while. Going then to a college in Massachusetts on a scholarship, he felt isolated, and went home to write his thesis. After obtaining his Master’s Degree in economics, he studied accounting at his home state university.

    Case #5:

    On June 29, 1962, at 19 years of age, he entered the armed services. Upon completion of basic training, he was assigned to one of the intelligence services, received a top security clearance, took courses until December 6, 1962 (the nature of which he could not disclose because they were of a “highly confidential nature”), and received an honorable discharge on January 18, 1963.

    Case #9:

    At 23 years of age, Fred is doing well at a university where he has a B plus average and is gifted in mathematics. He has adjusted well in college life and his schoolmates respect his academic prowess.

    This is “Not counting the gifted student of mathematics killed accidentally and the young man whom we have so far lost track after 1962 when he was in college…”

    But hey, maybe Leo Kanner didn’t know as much as Kent about how you’re supposed to diagnose Kanner autism.

  95. #95 Kent
    March 17, 2009

    “But hey, maybe Leo Kanner didn’t know as much as Kent about how you’re supposed to diagnose Kanner autism.”

    Joseph, I’m familiar with all of Kanner’s papers. While Kanner was important, and a pioneer, his paper’s don’t represent at all what I’m talking about, nor do I understand why you keep referencing this stuff.

    “you must absolutely have to have struggled academically to be diagnosable.”

    Joseph, here is where you lose me and why I don’t think you know what your talking about. I may be able to do the work academically, but that has nothing to do with anything. Executive functioning issues cause me to forget and become disorganzied. I may be a brilliant mathmetician, but I can’t get to class on time which could be due to any number of factors including being confused about the time of day, or what I need to bring to class or forgetting I had a class or going to the wrong class or being so anxiety ridden I stay in bed all day suffering from a fear of failure or any other number of obsessive thoughts that might enter the mind.

    Sensory issues caused a lot of problems with my ability to tolerate large lecture halls and living in a dorm room. Panic attacks, overloads etc. I can’t function with any noise at all when studying. I found that I couldn’t stand the touch of public showers and would go days without taking a shower. I stunk! and didn’t even know it.

    Can you see how these things could be disruptive to my functioning? It’s clinically significant, it interferes with daily life functioning. You see, you need a point of reference to understand what I mean when I say these things. Without that reference point, you assume its a cognitive issue or something when I mention problems with an academic setting.

    I think a problem here is that we are talking back and forth and away from each other because we don’t share a common reference point or experience.

    You want to talk about these issues, I want to talk about a progressive agenda for autistic folks. Your spending far too much energy trying to establish your bona fide’s.

    If you live in a large urban setting, try joining an AS support group. You may find it illuminating.

    I have no interest in discussing Leo Kanner or Brian Deer or any number of folks that aren’t putting roofs over folks heads, or advocating at an SSI hearing, or fighting a lack of educational supports or job opportunities. Real stuff that affects folks that is immediate. These things are immediate and urgent. My point is that the Hub should have more of that and less on the latest vaccination war score and charts and other bullshit.

    Anyway, lets move on. You and me don’t share a reference point on this and we are just talking past each other.

  96. #96 Kent
    March 17, 2009

    Joseph, I found this video and you may recognize the leader of the support group. This is a lot like my support group, mainly older folks with AS. The male to female ratio is about right too and is representative of my group as well. Now, flip the timeline back 20 years on these folks and tell me that they functioned well in academic settings which tend to be highly social, highly group oriented, requiring independent living skills, the ability to navigate a complex hierarchy of social classes that exist in a dorm, classroom, and administration. This is “vanilla” Asperger’s Syndrome. These are not folks that can “manage” an academic environment without extreme struggle. It took me 18 years to achieve what I did, twice the time of most folks. I never gave up and I had an enormous support network which if absent, I wouldn’t have been able to finish. Its not enough to be able to do the course work, it simply isn’t for the vast majority of us.

    Go to a support group in your area.

    http://www.youtube.com/watch?v=zkVYDo8vVLc&feature=related

  97. #97 Joseph
    March 17, 2009

    I may be able to do the work academically, but that has nothing to do with anything.

    I’ve pretty much run out of ideas on how I should explain things to you, Kent. First, autism is not a syndrome that describes Kent Adams exclusively, and anyone who is not like Kent Adams is not autistic. Autism is very heterogeneous. It’s not up to you to set the boundaries of the syndrome.

    Second, you make assumptions about the impairments other people you have not met might or might not have, and you fail to consider that you could be mistaken in your evaluation.

    Kanner might not be current, but you’re not going to tell me the autistics from Kanner (1971) and Kanner (1972) were not actually autistic.

  98. #98 Kent
    March 17, 2009

    “Second, you make assumptions about the impairments other people you have not met might or might not have,”

    “@Kent: First of all, I’m surprised you describe your son as having “severe” autism. I’ve seen videos of your son, and I recall, for example, Erik Nanstiel (I think it was) saying that your son doesn’t even appear classically autistic. Certainly, your son is by no means more “severe” than my own son, from what I’ve seen.”

    Good grief what a hypocrite you are Joseph.

  99. #99 Kent
    March 17, 2009

    “It’s not up to you to set the boundaries of the syndrome. ” Nor is it right for you to carry on with your “minstrel” show.

  100. #100 Dedj
    March 17, 2009

    Conditional information is one of the cornerstones of any intervention or service provision, alongside interactive information and knowledge of the ethics and processes involved.

    If one isn’t interested in the aetiology of autism that’s fine, but in order ford ones advocacy for autism will result in an effective change, we need to have people who ARE interested in it to back us up on the technical details , otherwise we will just end up with services that we won’t even know are going to be appropriate or not.

    We need this discussion in order to actually know the details of what we’re supposedly advocating for. Period. What we don’t need are the anti-vaxxor flies buzzing around. Go take it up with them.

  101. #101 Clay
    March 19, 2009

    Hello Jake,

    I haven’t checked this particular blog post for several days, so I didn’t know that you had responded to my post. You responded to *many* people’s posts at the same time yet; I’m quite impressed! Personally, I would have found it very difficult to address so many things at the same time. Not even sure how to edit this, so, bear with me, huh?

    Clay said,
    “Son, from your 16 yr old vantage point, it may have seemed a possible explanation, and you jumped at it”
    Reread my article, I did not talk about it with anybody for three years. That’s hardly “jumping” at anything.

    Not talking about it with anyone for 3 years has nothing to do with “jumping at it” as an explanation in your mind. It pleased *you* as an explanation, and you accepted it then and there.

    and:
    “There is no blame for being born autistic”
    I know, I’m well aware of my mother’s amalgam fillings.

    So you blame your mother’s fillings? Highly unlikely.
    Earlier in this thread, I read Daedalus2u’s hypothesis about pre-natal stress, and I responded, telling about how my mother once told me that my father had aimed a loaded shotgun at her stomach shortly after she realized she was pregnant with me. His theory explains something about 6 weeks after conception, making this a plausible explanation. SO FRIGGIN’ WHAT??? Even if this explanation were true, how could it possibly help me with anything in life? Just to have something I could point to, saying, “Blame IT, not me!” Okay, now how does that help?

    and:
    “but if you want to blame God, then go right ahead”
    I’m actually an atheist (no offense to anybody), but thanks for the advice.

    It makes no difference that you’re an atheist, blaming God would also have no effect, whatsoever, either way. I’m sorry that you didn’t get my point that you have to go on with your life, just as you are, so you might as well accept it. There’s simply no USE in blaming anything or anyone.

    and:
    “but they don’t tell the whole truth, such as how they will profit by “converting” you.”
    Like Paul Offit and his $29 million(minimum) vaccine royalties?

    Irrelevant. Please, while you’re in college, take a class in “critical thinking”. I think you’d get enormous benefit from it.

  102. #102 Jake Crosby
    March 20, 2009

    “Not talking about it with anyone for 3 years has nothing to do with “jumping at it” as an explanation in your mind. It pleased *you* as an explanation, and you accepted it then and there.”

    I didn’t “accept it then and there,” otherwise I wouldn’t have waited three years to share it with anybody.

    “Just to have something I could point to, saying, “Blame IT, not me!” Okay, now how does that help?”

    Even the FDA concedes that it may cause damage to developing fetuses and children, so you’re claim I’m just looking for something else to blame is invalid.
    http://www.fda.gov/cdrh/consumer/amalgams.html

    “There’s simply no USE in blaming anything or anyone.”

    Yes there is, by preventing it from happening to future generations.

    “Irrelevant. Please, while you’re in college, take a class in “critical thinking”. I think you’d get enormous benefit from it.”

    So doctors saying thimerosal causes autism have COIs, but Paul Offit’s benefitting financially from his ties to a vaccine manufacturer is irrelevant? What kind of critical thinking is that? Mady Hornig was denied grant support from the NIH, Boyd Haley was demoted from his position as Chairman of the Chemistry Department at the University of Kentucky, Mark and David Geier were accused by the CDC of confidentiality breaches relating to the VSD that they could not possibly have carried out, and Andrew Wakefield stands trial before the General Medical Council, chaired by a doctor who at least up until recently held considerable stock holdings in GlaxoSmithKline, and is facing the possibility of a revoked license. Meanwhile, Paul Offit, other than bragging that his earnings were like winning the lottery, made no mention of the minimal $29 million he earned from the vaccine he patented through Merck. While all these doctors who’ve shown a link to autism from thimerosal or the MMR through their research have put their careers on the line in doing so, Offit has at the very least 29 million more reasons to rail against these advances, placing total emphasis on epistudies of very poor quality instead.

  103. #103 Joseph
    March 20, 2009

    Mady Hornig was denied grant support from the NIH, Boyd Haley was demoted from his position as Chairman of the Chemistry Department at the University of Kentucky, Mark and David Geier were accused by the CDC of confidentiality breaches relating to the VSD that they could not possibly have carried out, and Andrew Wakefield stands trial before the General Medical Council,

    @Jake: That’s because you’re involved with a bunch of cranks and autism profiteers who often commit scientific improprieties. Some day you might see that.

    Mady Horning was denied grant support from the NIH? That’s the least we can say about her. There are some unresolved ethical questions about her Rain-Mouse study.

    Boyd “Mad Child Disease” Haley? He’s pushing an untested environmental heavy metal chelator for use in children.

    The Geiers? It’s been shown they plagiarized a paper and made up their own IRB to oversee their research. Also, I’ve read their papers. It boggles the mind why they haven’t been caught for scientific fraud yet.

    Wakefield? Why even bring him up?

  104. #104 Dedj
    March 20, 2009

    “Paul Offit, other than bragging that his earnings were like winning the lottery, made no mention of the minimal $29 million he earned from the vaccine he patented through Merck.”

    First, I’m suprised people are still going on about that ‘lottery’ quote. Dig up something more substantial or clear off.

    Second, I’m amused that we’re supposed to be surprised that Offit – who is even listed as the patent holder on his wiki page – makes money from his career as a vaccine inventor and doesn’t declare it.

    What next? Plumber Joe in ‘cash for plumbing’ shocker? Obama in ‘money for being president’ scandal?

    Harolds to the lot of you!

  105. #105 Jake Crosby
    March 21, 2009

    Mady Hornig lost NIH grant support not because of anything related to ethics, but purely on the excuse that there was no need to continue studying thimerosal in relation to autism on the basis of the kangaroo IOM Report. And yet, the NIH had no problem funding a study two years later which purported to be of the same design.

    You misunderstand, his analogy to Mad Cow Disease raised the valid point that the government responds much quicker to mental health problems in animals than in people OSR is actually an anti-oxidant, and there is no evidence that it is unsafe, nor is there evidence that chelation on autistic kids is unsafe.

    The allegations arose from a letter, citing similarities to the unpublished Simpsonwood study addressed to the Editor-in-Chief of Medical Science Monitor. The similarities can best be explained by the fact that the Geiers were using the exact same database used in that earlier study to find links to NDs. The person who sent the letter was Dr. Frank DeStefano of the National Immunization Program, one of the CDC researchers who coauthored the paper, claiming it was the first draft of the Verstraeten study published in Pediatrics. This is false, there was another study done before that, on each page were the words “CONFIDENTIAL,” and “DO NOT COPY OR RELEASE,” which DeStefano coauthored. In that study, the relative risk for autism was shown to be 2.48, exceeding legal minimum level of causation, 2.0. This is not counting the tables of the original data sent to him and another colleague via email by Verstraeten before that, where the risks on one table were as high as 11.35, asking advice as to how to bring them down despite all previous efforts. So DeStefano’s claim that the Simpsonwood study was the first phase of the Verstraeten study rather as opposed to previous confidential write-up before that where causal associations were still confirmed even after the first data-fixing on the tables sent to him in 1999 where they were even higher, can best be explained by the fact that he was telling a lie, yet another one told by the CDC.

    FDA guidelines for IRBs are as follows:

    (a)1 The IRB must have at least five members.
    (a)2 The members must have enough experience, expertise, and diversity to make an informed decision on whether the research is ethical, informed consent is sufficient, and appropriate safeguards have been put in place.
    (a)3 If the IRB works with studies that include vulnerable populations, the IRB should have members who are familiar with these groups. It is common for an IRB to include an advocate for prisoners when considering research that involves them.
    (b)1 The IRB should include both men and women, as long as they aren’t chosen specifically for their gender.
    (b)2 The members of the IRB must not be all of the same profession.
    (c) The IRB must include at least one scientist and at least one non-scientist. These terms are not defined in the regulations.
    (d) The IRB must include at least one person who is not affiliated with the institution or in the immediate family of a person affiliated with the institution. These are commonly called “Community Members.”
    (e) IRB members may not vote on their own projects.
    (f) The IRB may include consultants in their discussions to meet requirements for expertise or diversity, but only actual IRB members may vote.

    There is no evidence the Geiers breached any of those rules.

    Because Wakefield is yet another doctor trying to help autistic people get better and is getting persecuted worse than any other doctor who’s conducted such research. Because contrary to MMR apologist claims, his findings have been replicated by multiple researchers. Because the reason why he stands trial is because of some phony allegations forged by a sham journalist. Because that sham journalist continued reporting on the story from a bias perspective after that when he shouldn’t have, because he denied starting the investigation even though this is contradicted in a letter he sent addressed to the GMC, lying like DeStefano.

    You’ve got it totally mixed up who the cranks are.

  106. #106 Orac
    March 21, 2009

    There is no evidence the Geiers breached any of those rules.

    Wrong, wrong, wrong, wrong. See:

    http://scienceblogs.com/insolence/2006/06/antivaccination_warriors_vs_re.php

  107. #107 Joseph C.
    March 21, 2009

    Because contrary to MMR apologist claims, his findings have been replicated by multiple researchers.

    Bwahahahahahaha. Were those findings replicated in your ass?

  108. #108 Chris
    March 21, 2009

    Young Master Crosby, would you care to share the journal, author, title and date of where Wakefield’s “research” was replicated?

    By the way, from information available Wakefield did not do any “research” to help autistic children, but to line his pockets with more money. From legal aid (this is public tax funds!):
    http://briandeer.com/wakefield/legal-aid.htm

    … and from desperate parents paying for lots of useless tests and “cures” at Thoughtful House.

    You are a bit naive, and a tool. Please, take this advice:
    Only use your computer for school work, attend class, and do your homework (no more dropping out of class!). Stay away from networking sites, and very very far away from all blogs (especially Age of Autism).

    Learn to find the actual data, and think for yourself.

  109. #109 Jake Crosby
    March 22, 2009

    Orac said: “Wrong, wrong, wrong, wrong.”

    (a)1 The IRB must have at least five members.

    There are 7.

    (a)2 The members must have enough experience, expertise, and diversity to make an informed decision on whether the research is ethical, informed consent is sufficient, and appropriate safeguards have been put in place.

    There is no evidence this rule was breached.

    (a)3 If the IRB works with studies that include vulnerable populations, the IRB should have members who are familiar with these groups. It is common for an IRB to include an advocate for prisoners when considering research that involves them.

    This includes parents of autistic people.

    (b)1 The IRB should include both men and women, as long as they aren’t chosen specifically for their gender.

    There are 4 men, 3 women and no evidence any of them were chosen for their gender.

    (b)2 The members of the IRB must not be all of the same profession.

    Professions include geneticist, lawyer, clergy, lawyer etc.

    (c) The IRB must include at least one scientist and at least one non-scientist. These terms are not defined in the regulations.

    5 scientists, 2 non-scientists.

    (d) The IRB must include at least one person who is not affiliated with the institution or in the immediate family of a person affiliated with the institution. These are commonly called “Community Members.”

    There are 3.

    (e) IRB members may not vote on their own projects.

    There is no evidence Mark or David Geier voted on their own projects.

    (f) The IRB may include consultants in their discussions to meet requirements for expertise or diversity, but only actual IRB members may vote.

    This last point only infers what the IRB can do, not what they can’t, so this last rule is irrelevant to the topic.

    Chris,
    http://www.rescuepost.com/files/deer-letter-.jpg

  110. #110 Orac
    March 22, 2009

    Jake,

    I really urge you to be more careful when you post, as you really don’t have the background to know what you’re saying on this matter. You don’t understand how IRBs work, how they are put together, and what their mandate is, any more than J.B. Handley knows about clinical trial ethics. (His “One Wing” post was so ridiculous and demonstrated such an ignorance or willful misunderstanding of clinical trial ethics that I was tempted to apply some not-so-Respectful Insolence to it, but decided that he thrives on the attention and conflict too much.)

    I realize that my telling you this will likely piss you off, but that’s just tough. It is utterly unethical for Mark Geier to be the Chair of an IRB considering a protocol for which he is the principal investigator. No university–hell, not even a large pharmaceutical company–would permit such a massive conflict of interest on an IRB! Think about it. The Geiers have created an IRB so full of COIs that even big pharma wouldn’t have equaled it. Think of it this way: How would you and J.B. Handley have reacted if, say, Merck had constituted an IRB to evaluate a clinical trial of a new vaccine where the chair of the IRB was the principal scientist who led the team developing the vaccine, his wife, a lawyer who defended the pharmaceutical company against vaccine lawsuits, and an activist for the vaccine? You’d quite properly be screaming bloody murder about it, but when it comes to the Geiers you have a double standard. It doesn’t matter to you that the Geiers stacked their IRB with themselves, family members, and advocates for their cause, because to you they are on the “right” side.

    Indeed, aside from Mark Geier, it is utterly unethical for his wife and David Geier’s mother to be on that IRB; again, there are unacceptable COIs. It is also utterly unethical for a parent of a research subject to be on that IRB. The reason is objectivity; everyone on that IRB is a true believer in the thimerosal/vaccine/autism link. That alone violates (a)2; this IRB does not have the requisite knowledge and diversity to objectively make an informed decision over whether human subjects safeguards and informed consent are adequate for this protocol.

    Jake, you simply do not have the requisite background knowledge and experience to know what you are talking about. I’m sorry if saying so offends you, but sometimes a dose of reality is needed when a young man talks smack on something about which he is clueless.

  111. #111 Jake Crosby
    March 22, 2009

    Orac,

    First of all, I really appreciate you actually responding to me finally, even though you never got back to me about my question to you regarding when the next appropriate time would be for me to retake my Menactra vaccine. Secondly, I understand that IRBs are regulated through guidelines established by the FDA. Thirdly, your claim that this IRB violates rule (a)2 is not true, as it makes no mention about the opinions of the members. If you’re still displeased with this, I advise you concentrate your respectfully insolent efforts on the FDA instead.

    Just so you know, I have no quarrel with being corrected. It doesn’t bother me or “piss me off” as you say which I assume is your attempt to relate to me on a generational level. Just so you know, Aspie young adults don’t use slang that much. It pains me to say this but your claim that “big pharma” wouldn’t have equaled the COIs of Mark and David Geier is simply not true. I am not even concerned at this point about big pharma’s influence on IRBs that follow rules laid out by the government, because big pharma’s influence has extended into the government reaching the upper eshalons of power. The ACIP, the committee within the CDC which determines national immunization policy, is mostly representatives of pharmaceutical companies. George W. Bush’s own father served on the board of directors for Eli Lilly, Bush’s white house budget director Mitch Daniels is a former Lilly exec, Rumsfeld served on the board of directors for Eli Lilly’s business partner company Amylin Pharmaceuticals, Alan Arza went to work for Eli Lilly right after leaving his post as deputy HHS secretary, Tommy Thompson, the same HHS secretary who appointed Julie Gerberding, also appointed an Eli Lilly VP Gail Cassell to a committee that reported directly to him, and former CEO and still Chairman of Eli Lilly Sidney Taurel served on Bush’s own counter-terrorism committee. Obama has only been in two months so I can’t judge him or his staff, but based on the person he’s nominating for HHS secretary whose staff ignored concerns about thimerosal years ago, and the newly appointed FDA commissioner who is reportedly “good for industry,” things don’t look so hopeful. So as far as I’m concerned, screaming “bloody murder” at an IRB would be a waste. There’s an old Russian proverb that says the fish rots from the head, and that’s what’s at play here.

  112. #112 Jake Crosby
    March 22, 2009

    “your claim that “big pharma” wouldn’t have equaled the COIs of Mark and David Geier is simply not true.”

    CORRECTION: Big Pharma’s COIs wouldn’t have equalled those alleged of the Geiers, they far surpass them.

  113. #113 Dedj
    March 22, 2009

    “CORRECTION: Big Pharma’s COIs wouldn’t have equalled those alleged of the Geiers, they far surpass them.”

    You can’t really surpass knowingly and deliberately front loading the review commitee with people likely to pass your proposal purely on the basis that it furthers their own agenda.

    You can’t surpass knowingly and deliberately front loading the commitee with people chosen for their dependance on the furtherance of your own career.

    The Geier behaviour – if true – is shockingly bad in terms of the conflicts of interests in it’s members, and the transparencies of the influence of those self same interests in the selection of those members.

    To compare this behaviour to the routine protocols of Big Pharma is totally laughable, to the point where it could be held to be a delusional belief or sign of bias.

  114. #114 Shiritai
    March 22, 2009

    “Thirdly, your claim that this IRB violates rule (a)2 is not true, as it makes no mention about the opinions of the members.”

    This is patently false. As you have not bothered to read rule (a)2, here is the section that I believe Orac was referring to:

    §46.107 IRB membership.

    (a) Each IRB shall have at least five members, with varying backgrounds to promote complete and adequate review of research activities commonly conducted by the institution. The IRB shall be sufficiently qualified through the experience and expertise of its members, and the diversity of the members, including consideration of race, gender, and cultural backgrounds and sensitivity to such issues as community attitudes, to promote respect for its advice and counsel in safeguarding the rights and welfare of human subjects. In addition to possessing the professional competence necessary to review specific research activities, the IRB shall be able to ascertain the acceptability of proposed research in terms of institutional commitments and regulations, applicable law, and standards of professional conduct and practice. The IRB shall therefore include persons knowledgeable in these areas. If an IRB regularly reviews research that involves a vulnerable category of subjects, such as children, prisoners, pregnant women, or handicapped or mentally disabled persons, consideration shall be given to the inclusion of one or more individuals who are knowledgeable about and experienced in working with these subjects.

    Source: http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.htm#46.107

  115. #115 Joseph
    March 22, 2009

    The similarities can best be explained by the fact that the Geiers were using the exact same database used in that earlier study to find links to NDs.

    That’s the most ridiculous thing I’ve ever heard, Jake. Anyone can read both papers and see the blatant plagiarism. Plagiarism that consists of using hundreds of the same sentences and moving words around cannot be explained by them using the same database.

    I can’t believe you’re actually defending plagiarism and fake IRBs. I think it’s completely unethical for you to do so, and tells me something about your character.

  116. #116 Chris
    March 22, 2009

    Young Master Crosby is a naive tool.

    Really, young man, step away from the computer, go to class, do your homework and only use the computer for schoolwork.

  117. #117 Jake Crosby
    March 22, 2009

    Shiritai,

    I simply don’t understand the point of that copy and paste move you did. It really does not back up what you say anymore than the FDA’s rules for IRBs I posted originally. Nor, for that matter, does it make sense. The FDA dictating the opinions of IRB members is not only non-existent but would be unconstitutional. Our government is bad, but not that bad.

    Joseph,

    The fact that those allegations originated from a letter by a CDC official who lied that a confidential study he took part in showing autism causation didn’t exist says something about YOUR character. Similarities bewteen papers are open to subjectivity, lying is NOT. This guy’s name is on a study dated February 29, 2000, now in the public domain only because of a FOIA request, THREE MONTHS before the next study presented to the Simpsonwood (illegal)conference that he claimed to be the first. Unless he suffered some sort of blunt trauma to the head causing him to lose all memory of everything he did before June 2000, there is absolutely no excuse for this. The fact that the confidential study he’s denying shows a strong association between autism and thimerosal makes what he did all the more nefarious, way beyond anything you’re accusing Mark and David Geier of doing.

  118. #118 Jake Crosby
    March 22, 2009

    And another thing Joseph:

    Frank DeStefano, the person who lied, not only co-authored the Verstraeten studies, but also co-authored that NEJM study you claim to be quite thorough.

  119. #119 Jake Crosby
    March 22, 2009

    “Unless he suffered some sort of blunt trauma to the head”

    Didn’t mean to sound violent, amnesia has many causes.

  120. #120 Orac
    March 22, 2009

    Thirdly, your claim that this IRB violates rule (a)2 is not true, as it makes no mention about the opinions of the members. If you’re still displeased with this, I advise you concentrate your respectfully insolent efforts on the FDA instead.

    I don’t know why I bother with you, because you are so willfully dense on this matter and apply such a double standard; so I’ll make it very, very simple. You are completely wrong on this issue. You do not know what you are taliking about. I can’t put it more simply than that. Your citing of the relevant rules on the constitution of an IRB goes against your argument.

    Suffice it to say that none of the examples you cite equals the horrific COI of a principal investigator of a clinical trial not just sitting on the IRB that is going to make a determination on his clinical trial but actually chairing the IRB. In a university, if a member of the IRB submits a protocol for consideration, one of two things happens. Since most universities have more than one IRB, that member’s protocol would be considered by a different IRB. If the university has only one IRB (as is the case for smaller universities), then that member, as well as any others associated with him, would have to recuse themselves from the discussion. The IRB might even consider farming the protocol out to a different IRB at a different university.

    The bottom line is that you really should stop embarrassing yourself by making such patently wrong assertions.

  121. #121 Dedj
    March 22, 2009

    I sometimes think I have dyslexia. Why?

    Well……… I read the word ‘Update’ on the DeSteffano document to mean that it was an update on a study and not an actual study in itself. A study, of course, being the process and data that is written up in a document, and not a document in itself – the two terms having tangibly distinct meanings.

    Thus, when the study was presented to Simpsonwood, the original update (clearly marked ‘update’ on the original) counted as an update, not a study.

    Orac – have I misread, or is Jake talking out of it again?

  122. #122 Chris
    March 22, 2009

    Orac said “I don’t know why I bother with you,”

    Because, like me, you think this young man is not a lost cause. You think that his silly postings are due to him being naive and guided by not so nice adults (especially with invoking the Yurko crap, a guy who became an anti-vaccine hero after shaking his girlfriend’s baby to death: the child was conceived when Yurko was in jail, plus the poor child had broken ribs!).

    Many of us (cough, cough) older folk remember when we thought stupid things, and know that there is hope in getting an open mind as we grow older and break from our parental bonds (which for me included a dad who insisted that ghosts were real, and other silly things).

    As I said before (why do you keep coming back Young Master Crosby?):
    Really, young man, step away from the computer, go to class, do your homework and only use the computer for schoolwork.

  123. #123 Jake Crosby
    March 23, 2009

    Orac,

    How am I completely wrong on the issue? How does citing the relevant rules laid out by the FDA for IRBs hurting my case? What other specific rules, if they exist, do Mark and David Geier need to follow that they are not. If there are indeed no other rules other than the ones I have brought up and you yourself posted on your blog, why are you going after them? These are two private citizens merely working within the confines of the regulations laid out for them by the FDA. If you have a problem with that, why not blame the FDA for allowing this to happen?

    Are you kidding me? Of coarse none of the COIs I mention, penetrating the highest levels of government, equals your qualms with this one IRB. They make what Mark and David Geier did look like a canard, and that’s what it looks like at this point. I hear what you’re saying about IRBs at universities, but isn’t that because the protocol if approved would not only represent the person approving it but the institution as a whole? That asked, would it not make sense that this particular strategy would be adopted by universities? Just because universities follow IRBs this way, does that mean everyone has to? Shouldn’t it just be the rules according to the FDA that matter?

    Dedj,

    I’m sorry, but how does anything in your post wedded to specific terminology contribute to the discussion, if at all?

    Chris,

    I’m open to all sides, but on what basis is Alan Yurko guilty? Because a site called “Ratbags” says so? Doesn’t Yurko deserve a fair say?

  124. #124 Joseph
    March 23, 2009

    The fact that the confidential study he’s denying shows a strong association between autism and thimerosal makes what he did all the more nefarious, way beyond anything you’re accusing Mark and David Geier of doing.

    Jake, you not only keep defending blatant and obvious plagiarism, but you obviously don’t know what you’re talking about. That was not a confidential study. That was an early draft of a study that was published in 2003. The early draft had many shortcomings. I believe they weren’t even controlling for confounds at that point. That’s what the Geiers plagiarized – an early draft with a number of shortcomings.

    Furthermore, the early draft did not show an association between autism and thimerosal. It simply did not.

  125. #125 Chris
    March 23, 2009

    Young Master Crosby said “but on what basis is Alan Yurko guilty?”

    By the report that showed several broken bones in the baby. Also, did you not notice that he is back in jail?

    Now, please — stop defending the crook, get off the computer, go to class, do your homework and only use the computer for school work.

  126. #126 Joseph
    March 23, 2009

    Now, please — stop defending the crook

    More like: stop defending the crooks.

  127. #127 Kathleen Seidel
    March 23, 2009

    Jake, you’ve rationalized as acceptable the Geiers’ unattributed, largely unmodified appropriation of vast tracts of text and data from Verstraeten et al’s draft report of an early phase of the study eventually published in Pediatrics in 2003. Perhaps now you can take the next logical step — i.e., print out the Verstraeten draft, the Geiers’ “Two-Phased Study,” and my 2006 article comparing passages from the two, ask one of your professors to read them all, then ask whether the “Two-Phased Study” conforms to Brandeis University’s Standards of Academic Integrity.

    Perhaps you can also consider the odd fact that there’s no mention of IRB approval in the “Two-Phased Study,” even though IRB approval is required for all studies involving the VSD, a database containing private individuals’ medical information. Perhaps it’s because the Geiers’ didn’t “us[e] the exact same database used in that earlier study,” but rather borrowed data originally gathered by other researchers, and borrowed those researchers’ descriptions and interpretations of that data, too.

    If you were to engage in the same kind of shenanigans during your academic career and your instructors were to catch on, I daresay you’d be at serious risk of being expelled from the university.

  128. #128 Dedj
    March 23, 2009

    “Dedj,

    I’m sorry, but how does anything in your post wedded to specific terminology contribute to the discussion, if at all?”

    WTF? Is this even a serious question?

    I pointed out that you suddenly and without any show of conscience decided to switch arguements completely without attempting to address any of the concerns raised with your initial arguement.

    This is not about strict use of terms, and you know it, you uttetrly confused two seperate processes in an attempt to dodge the initial point. It is about your dishonest attempts to detract from your initial errors. Your attempts at throwing out whatever you can in order to save face are laughably incompetant.

    You have not addressed any concerns about your behaviour or arguementation. Stop these childish attempts at putting words in my mouth and start putting up or shutting up.

  129. #129 Scott
    March 23, 2009

    I just had an interesting thought. I wonder how much of Jake’s difficulties in college had to do with AD versus his (repeatedly demonstrated) complete lack of critical thinking skills?

  130. #130 notmercury
    March 23, 2009

    I blame Bing.

  131. #131 Joseph
    March 23, 2009

    The thing is, while autism is known to cause scarcity of citations in term-papers (and consequently, grades of C or less) it does not prevent writing 26-point (crap) rebuttals of blog posts.

    /s

  132. #132 Broken Link
    March 23, 2009

    Jake wrote:”Orac,

    How am I completely wrong on the issue? How does citing the relevant rules laid out by the FDA for IRBs hurting my case? What other specific rules, if they exist, do Mark and David Geier need to follow that they are not. If there are indeed no other rules other than the ones I have brought up and you yourself posted on your blog, why are you going after them? These are two private citizens merely working within the confines of the regulations laid out for them by the FDA. If you have a problem with that, why not blame the FDA for allowing this to happen?”
    ___

    Jake, let’s consider this from another point of view. Suppose you had a small group of people that were interested in vampirism. They wish to perform experiments on children to see how much blood they can suck out of them before doing irreversible harm. They have a protocol which involves taking blood, and then doing various tests to see how the children are doing. Suppose the leader of this group just happens to be a doctor, and he recruits his lawyer, his wife and his son, as well as a parent of a child who all are also into vampirism. Would it then be OK for this group of people to form their own IRB, and approve this blood-sucking research? Would it be OK, just because they have the appropriate number of people, and of the correct genders to make up the IRB?

    I thought not.

    And that’s why you need a proper IRB, without all the COIs that the Geiers’ IRB has. You are so blinded by the fact that you agree with what the Geiers are doing that you can rationalize that it’s right. It’s not right.

  133. #133 Chris
    March 23, 2009

    Joseph said “The thing is, while autism is known to cause scarcity of citations in term-papers (and consequently, grades of C or less) it does not prevent writing 26-point (crap) rebuttals of blog posts.”

    Which is why he should go to class, do his homework and only use the computer for school work and not for visiting any kind of networking sites, like blogs, forums, Facebook, etc!

    And if his parents are encouraging him to be the token naive fool tool for AoA, they should be ashamed of themselves. They need to stop denigrating their son, and make him get his butt to class and encourage him to get his nose on to the academic grindstone.

  134. #134 Kent
    March 23, 2009

    What a bunch of crap. Two sides bickering about a bunch of crap. One side steals my argument (Crosby) for a blog, while the other side (Joseph) belittles the idea that autistic people can have trouble in school directly related to the same criteria that is the basis of their diagnosis and placing blame on them for those difficulties as if they were personal failings. That’s the logic you wind up with when two faux’s go after each other.

  135. #135 Chris
    March 23, 2009

    Young Master Crosby could probably work on his academic problems by actually doing his homework and not writing long blog posts and replies. What is illogical about that?

  136. #136 Chris
    March 23, 2009

    Also, my son gets disability services at his community college. The main thing it gives him is counseling, and the chance to take tests in a quiet room without a time limit. My son had a final this morning and did say he did very well.

    Perhaps you should encourage Young Master Crosby to take advantage of the disabilities services and accommodations at his school, along with going to class, doing his homework and not wasting his time online. Also, it would help if you would encourage him and not use his autism as a reason to denigrate him, nor as an excuse for him not doing his homework.

    Just sayin’

  137. #137 Dedj
    March 23, 2009

    I’m not aware of anywhere Joseph has said that people with ASC’s do not/can not have academic troubles related to their ASC.

    What he has challanged is the implicit idea that people with ASC’s who have trouble academically intrinsically do so because of their ASC.

    This pinning of all negative traits on a diagnosis is a well known problem in autism services, and one we need to be aware of if we wish to deliver effective autism services.

    It’s also hugely hypocritical of anti-ND people to pin non-diagnostic traits onto autism as long as they’re negative, but refuse to allow ND-people the same courtesy when it comes to positive traits.

    But this is all crap according to the Gospel of Kent. We don’t need to talk about conditional information (despite it being a cornerstone of delivering appropriate services), we don’t need to talk about the wider social issues of autism (despite this affecting recruitment, funding and even legislation of services) and we don’t need to properly address the aetiology of impairments (despite this being the key to appropriate referrals to appropriate services).

    Nope. The only way to help people with autism is to talk about services, whilst avoiding any talk of any issue that actually affects those services or the daily life of people with autism.

    Because that stuff is ‘just crap’ you know.

  138. #138 Chris
    March 24, 2009

    May I just mention that the “counseling” that a person with disabilities can get is in not only the educational realm, but in the psychological realm.

    Now I have paid good money to a psychologist to talk to my son during a time he refused to do homework in high school. While my son did not actually talk to the psychologist, it did indicate I was concerned, and he was not going to get away with the “I am disabled” crap. He was dismissed from the psychologist and actually started to complete his homework. (by the way it turned out my son was being bullied and he refused to talk about it… apparently just by pulling him out, trying to make him talk about it was enough to make him get over it… I have no idea why).

    Anyway, take the anecdote as you will. Perhaps a qualified psychologist could help… or perhaps reminding Young Master Crosby that he is still young and has lots to learn, but he needs to actually “work on it” is all that is required.

    He really needs to focus on his school work. He should not be asked to write articles for AoA, and he should not be posting comments on any blog. Leave him alone and encourage him to attend class, do his homework, write his term papers and only use the computer for school work. And for heaven’s sake — make sure that you love him for who he is, and remind him about his talents. Love the boy, don’t denigrate him!

  139. #139 Jake Crosby
    March 24, 2009

    Mrs. Seidel, I am not rationalizing this as acceptable, as I never stated whether they did or did not plagiarize this. However, as you know since it’s quoted on your website, this allegation of plagiarism was first raised in a letter to the editor-in-chief of the medical journal where the Geier study was published written by Frank DeStefano of the CDC National Immunization Program, in which he said: “Much of the text and the “Phase II” results in their article are nearly identical to a draft manuscript written in June 2000 by Thomas Verstraeten, Robert Davis, and myself for the VSD investigators. This was the first draft of a study whose final results were ultim ately published in Pediatrics in November 2003 (reference #29 in the Geier and Geier article).”
    http://neurodiversity.com/weblog/article/108

    And yet, scroll down past the illegal meeting transcript which ends on page 259 and tell me what you see after that. It is a study dated “02/29/00″ with the names of Thomas Verstraeten, Robert Davis and Frank DeStefano, titled “VSD, Phase I.” Note that on every page are the words in bold capital letters, CONFIDENTIAL, DO NOT COPY OR RELEASE. Graph 3, top of page 14 of the study is especially interesting, showing that the relative risk for autism is 2.48 for=2 0children receiving more than 62.5 mcg of ethylmercury in their first three months of life, exceeding minimum level of causation, 2.00. Children at this time received 75 mcg during these months according to CDC recommendations. I received 75 mcg of ethylmercury, but over a 6 MONTH period.
    http://www.safeminds.org/legislation/foia/Simpsonwood_Transcript.pdf

    So in short, Frank DeStefano essentially lied that a confidential study showing autism causation by thimerosal didn’t exist, but clearly did since it was obtained in a SafeMinds FOIA request. I hear what your saying of IRB requests, but it’s been four years since this study was published. Wouldn’t someone from any one of those HMOs involved come forward and say their IRB did not approve the outside researchers access? All we have is a letter of speculation by a very high-up figure in the CDC who compromised his integrity in the same piece of writing where he accused others of similar improprieties. I also find it odd that you are suspicious of the lack of IRB mention when there is also no mention of Simpsonwood in the DeStefano letter. Instead, he said it was presented at the public ACIP meeting later that month, not the illegal meeting at the Simpsonwood retreat weeks before. Now when a researcher states the place when and where his study was presented, doesn’t he typically refer to the first presentation?

  140. #140 Kent
    March 24, 2009

    Dedj said: “But this is all crap according to the Gospel of Kent. We don’t need to talk about conditional information (despite it being a cornerstone of delivering appropriate services), we don’t need to talk about the wider social issues of autism (despite this affecting recruitment, funding and even legislation of services) and we don’t need to properly address the aetiology of impairments (despite this being the key to appropriate referrals to appropriate services).”

    Obviously Dedj, you have no idea of what my beliefs are because you frame this as the typical us vs. them. You folks are hapless and ill informed and I truly wonder how much time you spend around autistic people if any at all.

    Dedj wrote: “What he has challanged is the implicit idea that people with ASC’s who have trouble academically intrinsically do so because of their ASC.”

    Not in the case here. In the case here, he takes individual stories and explicitly denies them as if the individuals experience has no merit, without actually knowing the individual. That’s advocacy?

    Dedj Wrote: “It’s also hugely hypocritical of anti-ND people to pin non-diagnostic traits onto autism as long as they’re negative, but refuse to allow ND-people the same courtesy when it comes to positive traits.”

    I’m unsure if this was addressed to me or not. I am ND, but I’m not an ND that denies that autistic people struggle or have issues. Some autistic traits are negative, that’s a fact. Most autistic people I know suffer from anxiety. Is that positive? Should that be eliminated? I think it does. The positive traits most ND people focus on is often Aspie shininess. ND is becoming an Aspie movement to the exclusion of others on the spectrum. That’s where I part.

    Dedj I think your completely baffled by my position. Its the only explanation I have that would explain why you don’t understand it because I don’t fall neatly into either of the two camps your using to box people in.

  141. #141 Joseph
    March 24, 2009

    Kent is not worth talking to, in my opinion. He reads one thing here, one thing there, and then makes general statements like “I’m not an ND that denies that autistic people struggle or have issues.”

  142. #142 Joseph
    March 24, 2009

    So in short, Frank DeStefano essentially lied that a confidential study showing autism causation by thimerosal didn’t exist, but clearly did since it was obtained in a SafeMinds FOIA request.

    @Jake: Maybe you didn’t see it the first time. Again, that was not a confidential study. It was an early draft of a study that was eventually published. Of course unpublished drafts of important studies will be confidential.

    And again, the draft did not find an association between autism and thimerosal.

    The final paper, Verstraeten et al. (2003), was not a negative study. I’m not sure why people are under the impression that it was a negative study. Why do you think Thompson et al. (2007) was done?

    If you want to argue stuff, at least get your facts straight.

  143. #143 Kathleen Seidel
    March 24, 2009

    Jake, while it’s true that you haven’t explicitly said, “the Geiers committed plagiarism and that’s just fine with me,” your “Look! A pony!” gambit suggests that you regard their appropriation of text and data from the 2000 Verstraeten draft as less worthy of concern than a twelve-week discrepancy in dates — or, alternately, that you’d rather not consider the possibility that your heroes might be less heroic than you’ve been led to believe.

    There is nothing insidious about the fact that Verstraeten et al discussed a preliminary draft of the first phase of their study at a meeting of their fellow researchers prior to presenting their preliminary findings to the public. It would have been irresponsible for them not to solicit feedback from other professionals capable of offering an informed critique prior to presenting their work to the public. You are really grasping at straws and missing the point when you castigate Dr. De Stefano as a “liar” for describing it as a “June 2000″ draft in his letter to the editor of Medical Science Monitor. The point of Dr. De Stefano’s letter was to call Frank Stefano’s attention to the similarities between that draft and the Geiers’ paper, and to the absence of IRB approval. Dr. Stefano’s failure to offer any substantive response doesn’t mean that those concerns were investigated and found to be without merit; it does mean that Dr. Stefano chose to remain silent about concerns that, if they were found to have merit, might reflect poorly on his editorial judgment.

  144. #144 Dedj
    March 24, 2009

    “It is a study dated “02/29/00″ with the names of Thomas Verstraeten, Robert Davis and Frank DeStefano, titled “VSD, Phase I.” Note that on every page are the words in bold capital letters, CONFIDENTIAL, DO NOT COPY OR RELEASE”

    It was not a study, it was an update to the study. The word ‘Update’ is even written clearly on the cover sheet. Of course, you would have seen this had you actually checked the document yourself.

    If you’re going to accuse people of lying, it helps if your evidence doesn’t contradict you on the first place.

    I’m sorry, but you’re just a joke now.

  145. #145 Kathleen Seidel
    March 24, 2009

    Correction: George Stefano is editor of Medical Science Monitor (and also, quite interestingly, a co-editor of Neuroendocrinology Letters, which failed to respond to my concerns about the Geiers’ paper, “A clinical trial of combined anti-androgen and anti-heavy metal therapy in autistic disorders”). Frank De Stefano is the epidemiologist who co-authored the 2003 Pediatrics study.

  146. #146 Dedj
    March 24, 2009

    “Obviously Dedj, you have no idea of what my beliefs”

    Of course I’m aware of what your beliefs are, you’ve written them down multiple times.

    “I am ND, but I’m not an ND that denies that autistic people struggle or have issues.”

    So…..that puts you in with people like Murray, Turner, Arnold, Stanton, Gotts’, Golubock, Sinclair, Blackburn, Leitch then. It’s surprisingly how many of the ND movement are actively involved in services, not just talking about them.

    “Dedj I think your completely baffled by my position”

    Not really. You’ve got to the end of your tether with talk of aetiology and life experiences.

    You just want to talk about services.

    However:

    Conditional reasoning is one of the cornerstones for advocacy and services. You have to know how many/who/what you’re advocating for otherwise you’re just asking to return to the dark ages of ‘people warehousing’.

    If you don’t want to discuss vaccines or iatrogenic autism that’s fine, but don’t pretend we don’t need to discuss what autism actually is as a lived experience outside of the diagnostic criteria, and don’t pretend that we don’t need to discuss what the traits of autism actually are.

    If you want to blame someone for all this guff about vaccines then at least blame the right people – AoA, Generation Rescue, Jenny and Jim, Wakers, and people like Jake.

  147. #147 Kent
    March 24, 2009

    Joseph wrote: “He reads one thing here, one thing there, and then makes general statements like “I’m not an ND that denies that autistic people struggle or have issues.”

    Joseph, as you know, I’ve been “reading” for years before I recently came to the opinions I have today. Its not as if this has been a sudden change. I have a strong sense of social justice and I have become disenchanted with what is passing for ND on the Hub and you and others on this board are members of that Hub. Like I have said repeatedly, and only recently, is that it (the Hub) has taken a turn and for the worse. Unfortunately, the Hub is now the public face of ND. I don’t think ND should include defenders of Matthew Israel, aspie supremists, racists, homophobes, etc. I’m also of the belief that the Hub should be run by an autistic member. However, I’m a minority of one on that issue. Nevertheless, I think its the right thing to do.

    Perhaps you can come to my son’s school for his IEP in May, argue against supports and services because his difficulties in a school environment is his fault and he just needs to buckle down, pull himself up by his velcro straps and get on with it. Oh wait, your for supports and services? Why would that be? After all, you’ve written that some people just blame their autism for their failures, thus implying its a personal failing.

    I’d really be interested in your knowledge in this area because you’ve never demonstrated it on your blog. In fact, you’ve demonstrated you have very little interest based on what you write about. Your too busy with Wakefield, Deer, Geier and Hornig etc. to be bothered with changing the lifelong system imposed on autistic people. Much better to write about childhood issues because that is the only point of reference you really have.

    I just took a look at your blog titles all the way back to February 2006. All of it has to do with the “autism wars” between biomed and anti-biomed. That’s childhood issues Joseph. To me, that demonstrates the total lack of awareness of issues beyond childhood for someone that says they are an autistic adult. So for all these years you have been blogging, not a single blog post about lifespan issues faced by adults other than institutions are bad? Not a single word written about anything other than childhood controversies.

    I think its important that these fights move on and find common ground amongst folks that can put aside differences to work for a common and progressive agenda. It’s like your all at the playground throwing sand at each other. Its ridiculous.

  148. #148 Dedj
    March 24, 2009

    “After all, you’ve written that some people just blame their autism for their failures, thus implying its a personal failing”

    Uh, some people do just blame their autism for their failings, even when their failings appear to be more to do with attitude and motivation, or aren’t in the diagnostic criteria.

    It’s a known problem in autism services, even amongst staff and professionals.

    Acting like people don’t do this is insane.

    Sorry, but your personal vendetta against Joseph has no place here. I’d advise you to quit it before you risk becoming as much of a laughing stock as Docherty or Mitchell.

  149. #149 Joseph
    March 24, 2009

    BTW, these discussions around the Verstraeten et al. drafts are quite old. Jake is rehashing a debate that might have been appropriate in 2005. The Simpsonwood conspiracy theory was thoroughly debunked by Skeptico back then.

    I’ve read the two earliest drafts of Verstraeten et al. In neither of them is autism associated with thimerosal. The biggest autism risk ratio of all the measures between the two drafts occurs in the earliest draft (2.48), but the confidence interval is huge, crossing 1.0. That is, there was no statistically significant association, with n=16.

    Then there are what SafeMinds calls “Generation Zero” tables that come before the drafts. I could go into detail, but let’s just say there’s a reason SafeMinds doesn’t make these tables readily available. It took me a while to find the original tables obtained via FOIA.

    Also, the US Senate investigated the matter to see if there was a cover-up of sorts, and found nothing underhanded.

  150. #150 Kent
    March 24, 2009

    “and don’t pretend that we don’t need to discuss what the traits of autism actually are.”

    Uh, where did I do that? In fact, its my contention that autistic traits are being ignored here or dismissed as personal failings or not addressed at all. I see this quite opposite from you on what I’ve wrote about here.

    “If you want to blame someone for all this guff about vaccines then at least blame the right people – AoA, Generation Rescue, Jenny and Jim, Wakers, and people like Jake.”

    I blame both sides because neither has attempted to reach out and find common ground to move beyond this seemingly all encompassing preoccupation and distraction.

    “Sorry, but your personal vendetta against Joseph has no place here. I’d advise you to quit it before you risk becoming as much of a laughing stock as Docherty or Mitchell.”

    Dedj, I often get laughed at and dismissed, its common among autistic people and I don’t have a personal vendetta against Joseph, I’m just addressing things that he brings up and in the context of things he brings up. That may be uncomfortable, and I may appear to have some social and communicative problems with understanding when is enough for NT’s, but its my only form of communication. Joseph is just a symptom of the problem I see. I give equal weight to the larger body (not all) at the Hub and AoA as causing these problems.

  151. #151 Jake Crosby
    March 24, 2009

    “One side steals my argument (Crosby) for a blog”

    That is ridiculous. My article has to do with a specific ASD-related experience I encountered at college, furthermore I submitted it to AoA on March 6, over a week before you started posting on this thread.

  152. #152 Kent
    March 24, 2009

    “furthermore I submitted it to AoA on March 6, over a week before you started posting on this thread.”

    You didn’t steal it from this blog but an earlier one and I challenged you at AoA on your original post writing that if you didn’t require accommodations while in a university you aren’t autistic. If you require no accommodations, despite them being clearly available at Brandeis you aren’t impaired enough to rise to a diagnosis (difficulties have to rise to a clinically significant level). If you require no accommodations, your doing better than Professor Grandin and Professor Vernon Smith, both of whom require accommodations and one being a Noble Laureate.

  153. #153 Kent
    March 24, 2009

    Jake : “nor do I take accommodations for having an ASD. Even after openly accepting that I have Aspergers, I did not take academic accommodations”

    In an age when every campus,including Brandeis, has a disability office and recognition of AS as a disability to say you don’t take accommodations means to me that your difficulties don’t rise to the level of clinically significant and if they don’t rise to that level, you don’t meet the requirements of the diagnosis.

  154. #154 Jake Crosby
    March 24, 2009

    “You didn’t steal it from this blog but an earlier one and I challenged you at AoA on your original post writing that if you didn’t require accommodations while in a university you aren’t autistic. If you require no accommodations, despite them being clearly available at Brandeis you aren’t impaired enough to rise to a diagnosis (difficulties have to rise to a clinically significant level).”

    So you were the one blogged under the pseudonym “TD” claiming you have a low-functioning autistic son, right?

    “I would suggest that Jake doesn’t have AS if he doesn’t need accomodations. People with true AS have a disability. If they don’t need accommodations, they don’t have a disability.

    My son won’t be able to survive without accommodations so I’m not sure who Jake is speaking for but he sure isn’t speaking for my LFA son. My son won’t ever attend Brandeis University or any university for that matter so Jake doesn’t know real autism.”
    http://www.ageofautism.com/2009/03/the-age-of-neurodiversity/comments/page/2/#comments

    First of all, that is not stealing. My article in no way resembles your pseudonymous comment.

    Second of all, why weren’t you truthful about yourself rather than apparently pretend to be someone else, the father of an autistic child no less?

    Third, I qualify for accommodations, I just trudge along without them as any person persistent to overcome his disability would, and I do face difficulties as I have stated in my latest article.

  155. #155 Kent
    March 24, 2009

    Nope Jake that isn’t it. Its from Joseph’s blog and was posted 3 days before your article, though I wouldn’t doubt that the comment you pasted affected your thinking either. I challenged you by my name at AoA. Olmstead contacted me for particulars over concern that you were plagiarizing.

  156. #156 Jake Crosby
    March 25, 2009

    Mrs. Seidel,

    I am disturbed at your apparent lack of concern that a CDC official, who was at that time in charge of the National Immunization Program, lied about his earlier findings to a medical journal editor. This is neither a “pony” nor a “gambit” but proof of dishonesty from the CDC, ironically in a letter accusing outside researchers of similar improprieties. It doesn’t matter whether it was 12 weeks or 12 days before the second draft, there was a confidential draft that showed a very strong association with autism with his name on it that he essentially denied the existence of, falling short of statistical significance at .93 at 50 mcg exposure before relentlessly climbing to 2.48. This draft was before the data munipulations made to create the second, in which it was flooded with children too young to be diagnosed, bringing the relative risk down even more. This further compromises DeStefano’s claim as to whether or not Mark and David Geier had VSD access, which would essentially be the determining factor in whether or not they committed plagiarism. When they requested access to the VSD, the data Verstraeten examined were high on their demands so they can see how it matches up with their own earlier VAERS findings. So if they were granted permission to study the information to replicate the findings of Simpsonwood or any Verstraeten draft for that matter, it would be mutually understood that it was for the purposes of study replication by outside researchers. Moreover, the HMOs were mentioned in the study and thus far no one other than Frank DeStefano has come forward to state doubts on the matter, while lying in the same letter.

  157. #157 Jake Crosby
    March 25, 2009

    FIRST of all, you need to be specific if you are going to accuse me of plagiarism. Tell me WHERE the comment is, WHAT it is and WHEN it was posted. I do not appreciate being accused of plagiarism without any reference to the posts you allege I copied.

    I looked through all your posts on that blog. In none of them did I see you mention anything about trouble with citations, getting C/C+s, OR issues you have with the medical establishment’s laissez-fair approach to our condition. Thank you for making me waste my time.

  158. #158 Jake Crosby
    March 25, 2009

    Btw, that last comment is addressed to Kent.

  159. #159 Jake Crosby
    March 25, 2009

    I’ve decided to separate a whole new post for Simpsonwood, as this concerns the Sunshine Act:
    http://www.accessreports.com/statutes/sunshine.htm

    Open Meetings

    (a) For purposes of this section —

    (1) the term “agency” means any agency, as defined in section 552(e) of this title, headed by a collegial body composed of two or more individual members, a majority of whom are appointed to such position by the President with the advice and consent of the Senate, and any subdivision thereof authorized to act on behalf of the agency;

    (2) the term “meeting” means the deliberations of at least the number of individual agency members required to take action on behalf of the agency where such deliberations determine or result in the joint conduct or disposition of official agency business, but does not include deliberations required or permitted by subsection (d) or (e); and

    (3) the term “member” means an individual who belongs to a collegial body heading an agency.

    (b) Members shall not jointly conduct or dispose of agency business other than in accordance with this section. Except as provided in subsection (c), every portion of every meeting of an agency shall be open to public observation.

    And here we have the requirements need vote on whether a meeting should be closed, like Simpsonwood:

    (c) Except in a case where the agency finds that the public interest requires otherwise, the second sentence of subsection (b) shall not apply to any portion of an agency meeting, and the requirements of subsections (d) and (e) shall not apply to any information pertaining to such meeting otherwise required by this section to be disclosed to the public, where the agency properly determines that such portion or portions of its meeting or the disclosure of such information is likely to —

    (1) disclose matters that are (A) specifically authorized under criteria established by an executive order to be kept secret in the interest of national defense and foreign policy and (B) in fact properly classified pursuant to such executive order;

    (2) relate solely to the internal personnel rules and practices of an agency;

    (3) disclose matters specifically exempted from disclosure by statute (other than 552 of this title), provided that such statute (A) requires that the matters to be withheld from the public in such a manner as to leave no discretion on the issue, or (B) establishes particular criteria for withholding or refers to particular types of matters to be withheld;

    (4) disclose trade secrets and commercial or financial information obtained from a person and privileged or confidential;

    (5) involve accusing any person of a crime, or formally censuring any person;

    (6) disclose information of a personal nature where disclosure would constitute a clearly unwarranted invasion of personal privacy;

    (7) disclose investigatory records compiled for law enforcement purposes, or information which if written would be contained in such records, but only to the extent that the production of such records or information would

    (A) interfere with enforcement proceedings,

    (B) deprive a person of a right to a fair trial or an impartial adjudication,

    (C) constitute an unwarranted invasion of personal privacy,

    (D) disclose the identity of a confidential source and, in the case of a record compiled by a criminal law enforcement authority in the course of a criminal investigation, or by an agency conducting a lawful national security intelligence investigation, confidential source information furnished only by the confidential source;

    (E) disclose investigative techniques and procedures, or

    (F) endanger the life or physical safety of law enforcement personnel;

    (8) disclose information contained in or related to examination, operating, or condition reports prepared by, on behalf of, or for the use of an agency responsible for the regulation or supervision of financial institutions;

    (9) disclose information the premature disclosure of which would —

    (A) in the case of any agency which regulates currencies, securities, commodities, or financial institutions, be likely to

    (i) lead to significant financial speculation in currencies, securities, or commodities, or

    (ii) significantly endanger the stability of any financial institution; or

    (B) in the case of any agency, be likely to significantly frustrate implementation of a proposed agency action;

    except that subparagraph (B) shall not apply in any instance where the agency has already disclosed to the public the content or nature of its proposed action, or where the agency is required by law to make such disclosure on its own initiative prior to taking final agency action on such proposal; or

    (10) specifically concern the agency’s issuance of a subpoena, or the agency’s participation in a civil action or proceeding, an action in a foreign court or international tribunal, or an arbitration, or the initiation, conduct, or disposition by the agency of a particular case of formal agency adjudication pursuant to the procedures in section 554 of this title or otherwise involving a determination on the record after opportunity for a hearing.

    Do any of these apply to Simpsonwood?

    If so…

    Vote to Close Meetings

    (d)(1) Action under subsection (c) shall be taken only when a majority of the entire membership of the agency (as defined in subsection (a)(1)) votes to take such action. A separate vote of the agency members shall be taken with respect to each agency meeting a portion or portions of which are proposed to be closed to the public pursuant to subsection (c) or with respect to any information which is proposed to be withheld under subsection (c). A single vote may be taken with respect to a series of meetings, a portion or portions of which are proposed to be closed to the public, or with respect to any information concerning such series of meetings, so long as each meeting in such series involves the same particular matters and is scheduled to be held no more than thirty days after the initial meeting in such series. The vote of each agency member participating in such vote shall be recorded and no proxies shall be allowed.

    Is there any evidence regarding the confidentiality of Simpsonwood was voted on?

    which leads to…

    (3) Within one day of any vote taken pursuant to paragraph (1) or (2), the agency shall make publicly available a written copy of such vote reflecting the vote of each member on the question. If a portion of a meeting is to be closed to the public, the agency shall, within one day of the vote taken pursuant to paragraph (1) or (2) of this subsection, make publicly available a full written explanation of its action closing the portion together with a list of all persons expected to attend the meeting and their affiliation.

    If a vote on the matter happened, was a written copy made available to the public?

    Notice of Meetings

    (e)(1) In the case of each meeting, the agency shall make public announcement, at least one week before the meeting, of the time, place, and subject matter of the meeting, whether it is to be open or closed to the public, and the name and phone number of the official designated by the agency to respond to requests for information about the meeting. Such announcement shall be made unless a majority of the members of the agency determines by a recorded vote that agency business requires that such meeting be called at an earlier date, in which case the agency shall make public announcement of the time, place, and subject matter of such meeting, and whether open or closed to the public, at the earliest practicable time.

    Was a public announcement made a week in advance for Simpsonwood?

    (3) Immediately following each public announcement required by this subsection, notice of time, place, and subject matter of a meeting, whether the meeting is open or closed, any change in one of the preceding, and the name and phone number of the official designated by the agency to respond to requests for information about the meeting, shall be submitted for publication in the Federal Register.

    Was the name and contact information of an official with information about the meeting published?

    Closed Meetings

    (f)(1) For every meeting closed pursuant to paragraphs (1) through (10) of subsection (c), the General Counsel or chief legal officer of the agency shall publicly certify that, in his or her opinion, the meeting may be closed to the public and shall state each relevant exemption provision.

    Did whomever this would apply to in the CDC in connection to Simpsonwood state that the meeting should be closed and why?

    Transcript of Closed Meetings

    (2) The agency shall make promptly available to the public, in a place easily accessible to the public, the transcript, electronic recording, or minutes (as required by paragraph (1)) of the discussion of any item on the agenda, or of any item of the testimony of any witness received at the meeting, except for such item or items of such discussions or testimony as the agency determines to contain information which may be withheld under subsection (c).

    Were any transcripts that did not contain information that applied to subsection (c) made readily available to the public?

    If the answer to all, some or even one of these questions is “NO,” then wasn’t this meeting illegal?

  160. #160 Chris
    March 25, 2009

    You would probably do better in school if you actually put as much effort in your term papers! Except, you would get points off for cherry picking and distorting data.

    Again… stop coming here. Go to class, do your homework (and actually follow the directions!) and only use the computer to do school work. Do not go to any networking sites like Facebook, MySpace, DeviantArt, or any blogs (especially Age of Autism, that is a silly place), or forums. Sit you butt down and do the work. Unlike my very learning disabled son, you got into college — don’t screw it up!

  161. #161 kent
    March 25, 2009

    Jake, I think you’ve o.d.’d on B12.

  162. #162 Kathleen Seidel
    March 25, 2009

    “I am disturbed at your apparent lack of concern…
    Posted by: Jake Crosby | March 25, 2009 12:03 AM”

    Well, try not to lose any more sleep over it, Jake.

  163. #163 Antaeus Feldspar
    March 25, 2009

    FDA guidelines for IRBs are as follows:

    (massive quotation skipped)

    There is no evidence the Geiers breached any of those rules.

    Jake, let me see if I can explain what makes the Geiers’ “IRB” so wrong in terms that you can understand.

    Suppose you are a third-grade math teacher. You are giving your students a quiz, and because you are trying to instill good habits in them, you remind them that they should double-check all of their answers before turning in their test.

    You have a student, let’s call him Mark, or David, who completes his test and immediately starts bragging about how his answers are so right, he just knows he scored higher than every other student in the class and he’s even pretty sure that if there’s a difference between his answers and the answer key it means there’s an error in the answer key. He’s confident, all right — perhaps even arrogant, rather than confident.

    When it comes time to check his answers, however, it turns out that they have serious mistakes. For instance, on the very first problem, “75 – 3″, David (or Mark) put down “74″, instead of the correct answer “72″. “How could you get that so wrong?” you ask Mark/David. “Even if you did the arithmetic wrong in the first place, you were told to double-check your work. Surely when you added together ’74 + 3′ and you didn’t get back an answer of 75, you would have realized there was an error somewhere.”

    “But I did double-check my work!” insists David/Mark. “After I wrote down what is undoubtedly the correct answer, I leaned over to the next desk and asked my best friend whether I’m the smartest guy in the whole school and whether my answers are almost certain to be right. And he said yes, so my work was double-checked!”

    Jake, you quoted a long paragraph of rules governing IRBs and claimed that the Geiers’ IRB was fine because it didn’t violate any of those rules. But if an IRB violates the very purpose of having an IRB then it is wrong and useless, period.

    The purpose of an IRB is to double-check the answer to a question, except the question here is not a math question but the question “Does the proposed study meet our standards of medical ethics?” It’s a question which needs a double-check because, among other scenarios, sometimes investigators who stand to gain a lot of glory and career advancement and financial remuneration if they do a study and the results confirm their hypotheses are bad at seeing reasons why their study as proposed would be unethical, and results that challenge their hypotheses.

    It goes without saying that a so-called “IRB” which stands to gain just as much glory and career advancement and financial remuneration as the original researcher cannot truly serve as a double-check to the original researcher. No one who actually understands why IRBs exist would try to pretend that a spouse or a business partner of a researcher is an appropriate person to sit on an IRB checking that researcher’s work.

  164. #164 Dedj
    March 25, 2009

    “If the answer to all, some or even one of these questions is “NO,” then wasn’t this meeting illegal?”

    Whereas these are legitimate questions, what relevance would it being illegal have to your case?

    Would this make any data or opinions therein invalid?
    Would it act as a datapoint for iatrogenic autism in itself?
    Is the ‘illegality’ of the conference the responsibility of the contributors?

    The answer to all of these is no.

    It’s sad that you actually think that we’d fall for such a simple and obvious attempt at trying to bolster your case with such a weak point.

    Have more respect for us please.

  165. #165 Joseph
    March 25, 2009

    When it comes time to check his answers, however, it turns out that they have serious mistakes. For instance, on the very first problem, “75 – 3″, David (or Mark) put down “74″,

    In Geier’s case, the answer would be 720. Order of magnitude error.

  166. #166 Joseph
    March 25, 2009

    I am disturbed at your apparent lack of concern that a CDC official, who was at that time in charge of the National Immunization Program, lied about his earlier findings to a medical journal editor.

    I missed the part where you explained what it is that he lied about.

    It doesn’t matter whether it was 12 weeks or 12 days before the second draft, there was a confidential draft that showed a very strong association with autism with his name on it that he essentially denied the existence of, falling short of statistical significance

    If it falls short of statistical significance, why do you think it was a “very strong” association? You could have a risk ratio of 30.0, but if there’s no statistical significance, it doesn’t mean much. It’s only a possible trend.

  167. #167 Dedj
    March 25, 2009

    “I missed the part where you explained what it is that he lied about. ”

    Apparently he lied about doing an earlier study. However since it’s been pointed out that this was an ‘update’ to the study subsequently presented (as marked on the very first page of the document), Jake has chosen to relabel it a ‘draft’. Jake has not presented any source where DeSteffano denies the existence of the Feb 29 document, nor has he shown any understanding of the process of refinement and elimination of confounders – both legitimate reasons for re-drafting a study and often part of the process, as Jake will discover when it comes to his dissertation.

    Jake has made no attempts to show the refinements were wrong, or that their elimination of confounders was biased. The best he can come up with is alluding to dishonesty in DeSteffano, based purely on his own misreading of a clearly marked document.

    Funnily enough, Jakes’ sources even mention lack of diagnostic services as the reason why the rates of autism was under-recorded in one district (and thus implying that the autism risk was unduly biased downwards in the final phase). Yet, dare any of us suggest quality of diagnostic services as a reason for the rise in autism cases……

  168. #168 Iris Erlingsdottir
    June 29, 2011

    I wonder if she also has silicone in place of a brain…