It’s time for David Kirby to disavow the autism epidemic

3 Aug

The idea that mercury caused an epidemic of autism is both wrong and very damaging to the autism communities. Many contributed to this damaging notion., but David Kirby without a doubt carries a good quantity of the blame for his book “Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy” and efforts since.

Mr. Kirby often tries to hide behind the notion that he is just “trying to spark a national debate”. Sorry, but that is nonsense. He actively promotes the idea that vaccines cause autism. It is unclear to this reader whether Mr. Kirby is currently being paid for his efforts. In the past he cherry picked information and packaged it in seemingly self-consistent packages to convince people that an epidemic did occur.

He has now moved to a tag-team approach for presentations to the US congress. He presents information to support the idea that vaccines could cause autism. He then let’s Mr. Mark Blaxill take over to promote the epidemic with the old, tired arguments.

It’s like Mr. Kirby still wants to be able to say, “I never really said there was an epidemic. I was just sparking a discussion.” It’s Mark Blaxill that is actually calling it an epidemic.

Nonsense.

This has been bothering me for some time. It came up again strong when Mr. Kirby commented on a blog piece. David Kirby doesn’t generally participate in the online discussions-even to the point of not answering comments on his own blog pieces. He broke that tradition recently in a blog piece on the Mother Jones website: Breaking: Vaccines still don’t cause autism

My response to Mr. Kirby incorporated much of what I was considering for a future blog post. So, rather than paraphrase what I wrote, here it is in full:

Mr. Kirby,

I see your usual arguments above. I see, also, the usual gaps in your discussion. Over the years, you have gone from promoting the “vaccines caused an epidemic of autism” to dancing around the subject of the false “epidemic”, neither stating that there was an epidemic, nor admitting your mistake. Could you comment somewhere, on the record: was there an “epidemic” of autism caused by mercury? You seem to leave that to your colleague, Mr. Blaxill, giving yourself some form of plausible deniability. It is irresponsible.

You rely heavily now on the NVAC recommendations. Why do you leave out so many comments by NVAC?

The NVAC is assured by the many epidemiological studies of the effects of mercury exposure done in a variety of populations, which have demonstrated that thimerosal in vaccines is not associated with autism spectrum disorders in the general population.

Are you prepared to agree with NVAC that the data are in and that there has been no epidemic of mercury caused autism? It would be the honest thing to do.

You rely heavily on the idea that mitochondrial disorders are related to autism. You pushed heavily on your blog the idea that mitochondrial disorders are caused by mercury, without substantiation. In fact, this idea is strongly rejected by the very experts you rely upon.

Further, you leave it implied that children with mitochondrial disorders and autism indicate a link to autism as a vaccine injury. This is clearly not the case.

Why do you leave out the fact that most children with mitochondrial disorders and autism do not show regression. Without regression, it is clear that vaccine injury is not causing autism in these individuals?

Why do you leave out the fact that in the one study of children with mitochondrial disorders and autism, it is clear that vaccines are not causal in the vast majority of cases, and could be questionable in the one case cited so far?

You cite that there could be a sizable population of autistics who have a mitochondrial dysfunction. Yet you leave out the public statements by one of the very doctors who supported the Hannah Poling case in vaccine court that any such injuries are rare. This from the few doctors who support the idea of mitochondrial disorder as a vaccine injury. Other specialists have stated that it is far to early to draw a conclusion that mitochondrial disorders caused by vaccination is even “rare”.

Why have you not removed your blog piece that was so erroneous that you were forced to rewrite it within a day, with an admission that you seriously erred? Isn’t that a form of dishonesty?

Are you prepared to join Rick Rollens, one of the strongest proponents of the vaccines-cause-autism notion, in stating that the idea that MMR causes autism has been tested and MMR is no longer suspect?

I will ask again, if you are going to cite NVAC, are you willing to join them and state that mercury did not cause an “epidemic” of autism?

Would you at least be willing to include quotes from NVAC that are, shall we say inconvenient, to the notion of a vaccine induced “epidemic” of autism? Quotes such as:

Vaccination almost certainly does not account for the recent rise in ASD diagnoses; however, public concern regarding vaccines and autism coupled with the prevalence and severity of ASD warrant additional study in well defined subpopulations.

This quote makes it clear that
a) NVAC does not support the idea of an autism “epidemic” caused by vaccines
b) NVAC is not calling for studies of vaccines and autism due to evidence presented so far, but, instead, by public concern.

Mr. Kirby, your half truths and misleading arguments cause great harm to the autism communities, as well as to public health. You personally are responsible for much of the public’s misconception that mercury caused an “epidemic” of autism. Don’t you agree that you personally should publicly refute your previous stance?

Being wishy-washy on the epidemic question and letting your colleague Mark Blaxill push the idea in your tag-team briefings is just dishonest. Either you still believe in the mercury-caused-epidemic (and you are wrong) or you should be clear that it was a mistake.

It was a mistake. Earn some respect. Admit it.

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32 Responses to “It’s time for David Kirby to disavow the autism epidemic”

  1. Jake Crosby August 4, 2009 at 03:50 #

    You are one to talk, “Sullivan,” your delayed rebuttal of my open letter to Newsweek was filled with errors, if not lies. You basically created a straw man of your own in order to claim I created one.

  2. Sullivan August 4, 2009 at 04:00 #

    Mr. Crosby,

    you are welcome to point out any errors you may think are in my posts.

  3. AutismNostrum August 4, 2009 at 05:44 #

    If he ever did, you know the true believers would say he sold out to big pharma. Oh, the irony.

  4. Michael Kingsford Gray August 4, 2009 at 11:13 #

    You do not need to inquire as to whether he is being paid for his egregious fraud, for he is a member of a ‘religious’ cult that feeds his pathetic ego, and raises him from obscurity to a brief time in a spotlight.
    He needs no monetary reward for this notoriety.

  5. David N. Brown August 4, 2009 at 21:45 #

    I agree with Gray that whether Kirby is making money need not be important. I have long believed that financial gain is not a major motive for scientific fraud, at least where legitimate professionals are involved. My latest article at evilpossum.weebly.com looks at three especially notorious frauds, and the lack of evidence of a profit motive.

  6. Sullivan August 4, 2009 at 22:06 #

    Mr. Gray, Mr. Brown,

    I agree that the question of whether he is paid is low priority. I do think that if he is being compensated for his time to talk to people at the U.S. or U.K. Legislatures, he should announce that in his talk.

    Mr. Kirby’s background is in public relations, as I recall. The motive to keep his own name in the public’s eye can’t be discounted.

    I would say that perhaps he just feels this is his mission. Except that he made it clear that it isn’t.

    Also, I find it frankly distasteful that he considers himself a spokesperson for the autism community.

    He has autographed books:

    Thnak you so much
    for your service to
    the autism community.
    Keep up the work!
    David Kirby

    Besides the fact that I don’t think he should be doling out thanks for “service to the autism community”, I think he should make it clear what side of the fence he is on. Does he consider himself an impartial journalist making observations from the outside, or is a “community insider”? Again, that should be made clear to people he gives “briefings” to.

    (note, formatting and small changes were made shortly after this comment was submitted)

    • Sullivan August 4, 2009 at 22:15 #

      Perhaps Mr. Kirby could just use his own words when he gives briefings:

      Finally, to all those who are going to post comments about the autism rates in California not coming down, following the removal of thimerosal from most vaccines: You are right. The most likely explanation is that thimerosal was not responsible for the autism epidemic. But that does not mean that it never harmed a single child.

      Maybe he could say that right after Mark Blaxill gives his talks?

      and

      I am not an autism activist, and this is not my crusade

      If he is not an “autism activist”, who is he to be thanking people on behalf of the “autism community”?

  7. Jake Crosby August 5, 2009 at 01:35 #

    “Sullivan,”

    You misrepresented who told me about the article Ari Ne’eman will have in Newsweek. I put the link to the blog of the person who told me in the paragraph introducing my letter at the beginning of my post, who was a different person from the one who you claimed told me.

    You also said that the article was already on its way to press, and there was no way it can be changed, as if I had anyway of knowing that. At the time, I made it clear in my letter that I was not even sure an article for Ari Ne’eman was going to run, much less if one was going to run in a week no matter what.

    Even if the Ari Ne’eman article was destined to run, does that automatically mean the opportunity for equal coverage was closed? Couldn’t the magazine have released a later article this time publicizing an interview with a pro-cure autistic?

    To name a few…

  8. Sullivan August 5, 2009 at 01:53 #

    Mr. Crosby,

    these comments would be best made in the blog piece you are commenting on.

    I never said who told you about the article. I noted that the information I had said who made the initial leak. I noted that one of the worst people ever to work as a “Rescue Angel” blogged it. I did not state who told you. Very clearly.

    I said that the article was in press, true. From your source, “It is supposed to be published in a couple of weeks.” Sorry I thought it common knowledge that non time-critical stories are not changed in major magazines close to publication.

    Would you like to address the real issue? You appear to be avoiding the major question I raised in my blog piece. You base your letter on a clearly mistaken belief:

    Neurodiversity is an ideology supported primarily by some autistic individuals and parents who do not believe that autism is a disability

    Quoting the article:

    The task he has taken on is daunting and controversial: he wants to change the way the world views autism. Autism is not a medical mystery that needs solving, he argues. It’s a disability, yes, but it’s also a different way of being, and “neurodiversity” should be accepted by society.

    Quoting the ASAN webpage, the first two sentences of their mission statement:

    The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement in the world of autism. Drawing on the principles of the cross-disability community on issues such as inclusive education, community living supports and others..

    Would you like to publish your correction now?

    Couldn’t the magazine have released a later article this time publicizing an interview with a pro-cure autistic?

    Absolutely. I just think you proved yourself to be inappropriate given the fact that you clearly were promoting an idea that is clearly and demonstrably false (neurodiversity advocates don’t believe that autism is a disability).

    Perhaps if you were to correct your mistake you would earn some credibility and be a more appropriate candidate for a rebuttal story. Serious suggestion. Consider it.

  9. Jake Crosby August 5, 2009 at 03:11 #

    As I recall, you had to sign in in order to make comments on this blog at the time of that post. Plus, the point I am trying to make is that it is hypocritical to accuse others of discrepancies you are guilty of.

    You said:
    “Here’s one bit of advice for Mr. Crosby: when you are pickup up stories from John Best, fired Generation Rescue “Rescue Angel”, you are putting yourself in really bad company.”
    Read more: http://leftbrainrightbrain.co.uk/?p=2479#ixzz0NGiAkYWq

    Grammatical errors aside, you basically said I picked up the story from John Best. What’s most ironic is that you go on about how bad a person he is, yet I honestly cannot think of anyone who has given him greater publicity than NDs such as yourself. If you think he is such a horrible person, why boost his search rankings?

    The definitive status of an upcoming story would not be common knowledge to those who don’t even know for sure whether the story is going to run at all.

    As for your statement of my alleged mischaracterization of Neurodiversity, I don’t think Ari should’ve gone onto national television to speak over the caption “There’s nothing wrong with us!” if he didn’t want people to believe he didn’t think ASDs were a disability in its legal, solely-defined meaning. At the very least, he should have later issued a retraction, disassociating himself with that statement. He never did.

    It seems there are a lot of inconsistencies the how the NDs define their perception of disability and how it relates to autism. They don’t use the actual definition of disability in their characterization of autism, but the social definition, that does not fit the actual definition of disability and is actually concocted to challenge it, but then when people say Neurodiverisity does not believe autism is a disability you say they are misrepresenting your views. It seems in doing so you make a number of false assumptions: 1.) That the precise definition of disability is up for interpretation and 2.) That others not only automatically know what your “social model of disability” is when few actually know about it other than its proponents, but mean that estranged version of “disability” rather than the word’s actual definition. You can read my latest article addressing the issue here:
    http://www.ageofautism.com/2009/07/why-asperger-syndrome-is-a-legal-disability.html#comments

  10. Jake Crosby August 5, 2009 at 05:58 #

    “Sullivan,”

    You have shown me examples where the ND group ASAN uses the words “disability,” but nothing that tells me whether they mean the word’s actual definition, or their so-called “social model” version.

    • Sullivan August 5, 2009 at 07:18 #

      Take the first link in my previous comment. A more complete quote gives an idea of what they mean by disability:

      The autism spectrum is a very real developmental disability affecting millions of Americans. It includes a series of impairments in social interaction and communication, executive functioning, sensory processing, and motor skills.

      Impairments in communication, executive functioning, sensory processing and motor skills.

      That statement is followed by what is required to respond to disability:

      Adults and children on the autism spectrum often require substantial supports, services and education across the lifespan.

      I don’t know what you mean by “social model” vs. “legal” definitions of disability. People with impairments to executive functioning and motor skills sound disabled by just about any common definition of disability I can think of. Choosing Wikipedia because it is late and it is on the first page of my search, “Disability is defined by the Americans with Disabilities Act of 1990 as “a physical or mental impairment that substantially limits one or more major life activities.”” It appears from the above quote that ASAN and Mr. Ne’eman are defining autism as having impairments both mental and physical.

      I could only find two hits for a search of the ASAN website for “social model”.

      Here is a quote from a paragraph citing the phrase “social model

      Perhaps the largest consequence of the neurodiversity movement and its associated ideas is the emergence of a community of people on the autism spectrum along the social model rather than the medical one. While generally associated with the mildest diagnoses of autism – Asperger’s Syndrome – the autistic community consists of many members with more “severe” types of characteristics as well, including people who have received the diagnosis of “low-functioning autism”. To view the autism spectrum as a disease means a limited role for a community of autistics beyond supporting each other in those aspects related to the disease. This “support group” model certainly exists in the autistic community, but it does not encompass the entirety of what that community is. As it exists today, the autistic community has cultural, social and even political elements well beyond that which would usually exist in a group bound solely by a common medical condition.

      The “community” is formed on the “social model”.

      Note that the line that immediately precedes that paragraph states:

      Autism spectrum characteristics range from severe difficulties with speech and cognitive disabilities to above average intelligence with significant social skills difficulties.

      Again, using Wikipedia for a definition of “Social Model of Disability”:

      The social model of disability proposes that systemic barriers, negative attitudes and exclusion by society (purposely or inadvertently) are the ultimate factors defining who is disabled and who is not in a particular society. It recognizes that while some people have physical, sensory, intellectual, or psychological variations, which may sometimes cause individual functional limitation or impairments, these do not have to lead to disability, unless society fails to take account of and include people regardless of their individual differences. The model does not deny that some individual differences lead to individual limitations or impairments, but rather that these are not the cause of individuals being excluded. The origins of the approach can be traced to the 1960s and the disabled people’s Civil Rights Movement/human rights movements; the specific term itself emerged from the United Kingdom in the 1980s.

      For emphasis, I pull out: “The model does not deny that some individual differences lead to individual limitations or impairments, but rather that these are not the cause of individuals being excluded.”

      I’d encourage you to take a little time to consider whether you may have made statements based on some incorrect assumptions.

      I’ve taken you at your word: you honestly thought that there was time to change the story, and you didn’t get the information from Mr. Best. I’ve updated the post to reflect that.

      Should you, after careful consideration, consider that your comments about Mr. Ne’eman could be updated to reflect that he does consider the autism spectrum to be a disability, you could make a similar correction.

      • Sullivan August 5, 2009 at 07:33 #

        One more comment:

        I don’t speak for Mr. Ne’eman. I am basing these comments on exactly the same information available to you. I don’t profess to know what he thinks. I do know some of what he has written. I have read much more tonight responding to these questions. I would encourage you to do the same–go to the source.

  11. Clay August 5, 2009 at 06:57 #

    Big surprise, he chose number 1. (But he’ll probably go to work on number 2.) heh heh.

    • Sullivan August 6, 2009 at 00:32 #

      Clay,

      I didn’t think things through. AoA generally doesn’t like to acknowledge the other blogs by name. Good possibility he isn’t trolling for blog fodder, but is just honestly partaking in the conversation.

  12. Jack August 5, 2009 at 11:06 #

    Interesting that “Jake Crosby” wants to debate these issues here, in a thread that has nothing to do with them, when he objected to another article of his being discussed on the Autism Speaks forum. There he demanded that his Age of Autism articles be discussed ONLY on Age of Autism. He’s uncomfortable with not having the power to delete contrary comments before they’re published, apparently.

    • Sullivan August 5, 2009 at 18:22 #

      Well, he may want to drive traffic to his site. (I can understand that)

      I don’t read that forum, but did he bring up his posts there? If so, it would be good form to discuss them there.

  13. Jake Crosby August 5, 2009 at 19:46 #

    Now here is the portion I emphasize:

    “It recognizes that while some people have physical, sensory, intellectual, or psychological variations, which may sometimes cause individual functional limitation or impairments, these do not have to lead to disability, unless society fails to take account of and include people regardless of their individual differences.”

    So, while it may acknowledge certain limitations, it seems to be saying that autism can only be a disability if society mistreats people with autism.

    • Sullivan August 5, 2009 at 20:01 #

      I guess I am a bit confused as to your point. From your recent blog post:

      “disability is defined by lack of functioning”

      From the section you quoted above:

      “which may sometimes cause individual functional limitation or impairments”

      How is a functional limitation or a functional impairment different from a lack of functioning?

  14. Jake Crosby August 5, 2009 at 20:38 #

    You seemed to have cherry-picked the quote from its original context:

    I am saying that autism itself is what leads to disability, which is how the word is legally defined.

    What you NDs seem to say is that poor treatment from society for having autism is what leads to disability by your own definition, not the actual, legal definition of the word “disability.”

    • Sullivan August 5, 2009 at 21:32 #

      I pointed out that the very quote you are relying on clearly acknowledges your definition of disability. Your writing tends to lead people to believe that people with the various neurodiversity views don’t see autism as being diabl

      Just so we are on the same page–here is part of the legal definition of disability from the ADA:

      (1) Disability. The term “disability” means, with respect to an individual
      (A) a physical or mental impairment that substantially limits one or more major life
      activities of such individual;
      (B) a record of such an impairment; or
      (C) being regarded as having such an impairment (as described in paragraph (3)).

      There is substantial language further defining these terms, but I think the above is sufficient for this discussion.

      I recall you making a statement once that the legal definition is not up for interpretation–or something to that effect? Quite the opposite, legal definitions are always up for interpretations. Judges do it all the time. It is their job. It is unfortunate, because the definition of disability in the ADA has been misinterpreted much throughout its history.

      Again from the ADA

      (3) while Congress expected that the definition of disability under the ADA would be interpreted consistently with how courts had applied the definition of a handicapped individual under the Rehabilitation Act of 1973, that expectation has not been fulfilled;

      I bring this up not to correct you. Rather, I bring this up because ASAN has worked with other disability orgs to clarify the definition of disability in the ADA by lobbying to remove the idea of “mitigating measures”. I.e. ASAN has worked to make harder to misinterpret the definition of disability.

      Here is some of the language in the ADA now:
      http://www.ada.gov/pubs/adastatute08.pdf

      (E) (i) The determination of whether an impairment substantially limits a major life activity
      shall be made without regard to the ameliorative effects of mitigating measures such
      as
      (I) medication, medical supplies, equipment, or appliances, low-vision devices
      (which do not include ordinary eyeglasses or contact lenses), prosthetics
      including limbs and devices, hearing aids and cochlear implants or other
      implantable hearing devices, mobility devices, or oxygen therapy equipment and
      supplies;
      (II) use of assistive technology;
      (III) reasonable accommodations or auxiliary aids or services; or
      (IV) learned behavioral or adaptive neurological modifications.

      The idea of “mitigating measures” was used to legally define some people with autism as not being “disabled” because “mitigating measures” could be used to overcome the disability.

      The reality is opposite of what you have been stating. ASAN worked to redifine the legal definition of disability in such a way as to insure that more people with Asperger Syndrome (people who could use mitigating measures) would still be defined as disabled.

  15. Joseph Romer August 5, 2009 at 20:56 #

    I’m very curious as to what Mr. Crosby considers the “legal definition of the word disability”.

  16. Dedj August 5, 2009 at 21:46 #

    “So, while it may acknowledge certain limitations, it seems to be saying that autism can only be a disability if society mistreats people with autism.”

    Indeed, that is exactly how one delineates between an impairment and a disability, although your use of the over-simplification of ‘mistreats’ indicates that you haven’t grasped the nuances of the social model, or even correctly understood the actual wording of the quote you included.

    ALL current definitions of disability -, there are more than the one as you wrongfully implied (note – implied means you failed to reference it competantly or even at all) – have a ‘significant’ or qualatative element to them.

    An impairment becomes ‘significant’ if there is no or little accomadation for it, i.e. if the lack of accomodation leads to a significant (or disabling) loss of function in everyday life.

    The social models argues that the disabling factor is the lack of accomadation for atypical characteristics. It looks at HOW we delineate between ‘different but not disabled’ and ‘different to the point of being disabled’.

    At no point does the social model contradict the supposedly ‘singular’ and ‘actual’ definition of disability unless you read it to mean that the limitation is strictly from the impairment only, which would of course require you to already follow the medical model. The social model argues that the factors that effect the ‘substantial limitation’ can and does have formal and informal social and institutional input.

    The supposed ‘inconsitencies’ and ‘contradiction’ between the ND arguement and the ‘official’ definition of disability disappear once one realises that the social model is a model of where the concept of disability comes from and what makes an ‘impairment’ ‘significantly limiting’.

    In essence, once one knows what they’re talking about, Jake’s points seem poorly informed and badly thought out.

    Again.

    • Sullivan August 5, 2009 at 22:58 #

      Dedj,

      I do not profess to be any sort of an expert on disability definitions. Feel free to educate/correct me as well.

  17. Dedj August 6, 2009 at 01:14 #

    “Dedj,

    I do not profess to be any sort of an expert on disability definitions. Feel free to educate/correct me as well.”

    I don’t think there will be much need, as it is patently obvious that you are significantly more well read and have a better understanding of how disability is defined than Jake does, even if we accept only the ADA definition as valid.

    Of course, without the minimal effort from Jake to actually reference the definition he is referring to, we can only do his work for him and assume he is reffering to the ADA. This holds little to no legal standing outside the US, and is surpassed by the DDA definition in the UK, and the WHO definition which explicitly mentions factors that effect what is ‘considered normal’ including the very factors that are implicated in the social model.

    Of course, none of this changes that fact that Jake attributed a opinion to a person who explicitly stated the opposite opinion in easily found and publically available sources (which Jake somehow managed to overlook) and that Jake then avoided this by asserting that this person was somehow responsible for the captions on GMA, which Jake attributes to another ND on his May 19, 2009 cripchick blogpost.

    So basically, you caught Jake out good and proper and his only defence is too blame it on someone else over something he knows they didn’t say in a format they didn’t control.

    Par for the course for Jake I’m afraid.

    • Sullivan August 6, 2009 at 01:38 #

      Dedj,

      I would actually prefer a good discussion of the what is/what makes disability and learn something than discuss how another blogger didn’t do his homework.

      But, right now I can’t think straight. I need to walk away form the computer and stop looking up stories about the murder case I just posted.

  18. Dedj August 6, 2009 at 02:01 #

    I would prefer a good discussion as well, but I have discussed many things with Jake before, on this site and others, and seen many of his discussions with others.

    A good discussion is unlikely to be within his capabilities, nor within his intent.

    You are welcome to try. I had more to type but have realised how futile discussions with him have always been. He must be the only person on the planet who never misreads sources, never makes an error and who never gets it wrong. You will discover that he MUST be right no matter what.

    Exactly the last person you can have a decent discussion with.

    • Sullivan August 6, 2009 at 04:12 #

      Dedj…I was thinking of a good discussion with you!

  19. Dedj August 7, 2009 at 03:41 #

    I’m not sure what I could already tell you that wasn’t already freely available through google, and that isn’t already within your evidently quite comprehensive understanding.

    Having said that, I’m merely a health professions student with a mere three years of academic and clinical experience working with people with disabilities. I’m merely in a country where many health care trusts, disability organisations and professionals are adopting the social model (tip to Jake – type ‘nhs social model of disability’ into google – yes, I know that you clearly have no idea how to use google but I’m sure one of your parents will help you if you ask).

    I can’t possibly know more than a suddenly and coincidently absent history student whose main claim to relevant expertise is having a couple of articles published on a blog.

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