Wednesday, October 28, 2009

Reasons Why The Autistic Community Should Fight The Anti-Vaccination Quacks -- A Working Document

This is the working document for a future entry. The items below are not in any particular order (I plan to do a countdown, listing them in ascending order of importance and descending number), and the below is not a complete list. I am more than open to suggestions and I will add links and references when I finally get around to posting the final document.

1. "Don't vaccinate your children because vaccines cause autism" demonizes autism, portrays autistics as "damaged goods", and contributes immensely to psychosocial stigma.

2. It's the right thing to do.

3. "Vaccines cause autism" is wrong -- in the sense of "incorrect". We have enough junk science in the field of autism even without the vaccine causation hypothesis.

4. The vaccine/mercury causation hypothesis is the nominal basis for a number of harmful quack treatments, such as chelation and the Lupron protocol.

5. Allies against the anti-vaccination quacks are generally highly motivated, skeptical, highly intelligent, and/or well-placed to help us fight other forms of quackery. The foot-in-the-door phenomenon applies, and the alliances formed accordingly can be used to our political advantage.
6. We can make a difference in the fight.

7. Sitting back and allowing one form of quackery to go unfought leaves the door open to others.

8. The anti-vaccination movement kills people. As the anti-vax movement targets the families of autistic children, this often means that it's us or our families who get sick and die.

9. Killing or recklessly endangering other people in the name of preventing people like us from existing is most certainly not acceptable.

10. Anti-vaxxers guilt-trip the families of autistic children over vaccinating their autistic child. This can have tragic consequences for autistic people.

11. The anti-vaccination crowd often acts as a concerted mob, bullying and acting to exclude people who disagree with them (and especially those on the spectrum who do so). This greatly adds to the difficulties in having reasoned discourse between autistic individuals and parents, and contributes to our exclusion from the discussion about autism. (Thanks to Kim Wombles)


  1. One more: the anti-vaxxers on the internet act in a concerted way as bullies. Standing up to bullies is the right thing to do. They do to others what they would rightfully bemoan being done to their autistic children.

  2. Actually, they've done that to adult autistics, too. I can testify to this firsthand. Good point!

    11. The anti-vaccination crowd often acts as a concerted mob, bullying and acting to exclude people who disagree with them (and especially those on the spectrum who do). This greatly adds to the difficulties in having reasoned discourse between autistic individuals and parents, and contributes to our exclusion from the discussion about autism.

  3. When you refer to those who you consider "anti-vaccination quacks" remember that at one time doctors such as Ignaz Semmelweis and Oliver Wendell Holmes Sr were called quacks for their ideas on germ theory and that diseases would not be spread from patient to patient if the doctors washed their hands when going from one patient to the next.
    A hundred years later Bruno Bettelheim was considered a "mainstream" doctor when he expounded his "refrigerator mother" theory which was the accepted idea about autism for the next 30 years.

  4. The people you are condemming as "anti-vaccination quacks" are all opposed to vaccinations. They have themes such as "Educate before you vaccinate" and "Green the vaccines".
    What they are opposed to is vaccines with toxic ingerdients and giving vaccines at close intervals.
    The people you are condemning as "anti-vaccination quacks" are not all opposed to vaccinations. They have themes such as "Educate before you vaccinate" and "Green the vaccines".
    What they are opposed to is vaccines with toxic ingredients and giving vaccines at close intervals.

    Doctors swear the Hippocratic Oath, part of which says "I will not give a lethal drug to anyone if I am asked, nor will I advise such a plan."

    But then they inject vaccines with mercury into humans.

    My first sentence should have read; "The people you are condemming as "anti-vaccination quacks" are NOT all opposed to vaccinations.

  6. Anonymous,

    I am quite aware of the rhetoric. Thiomersol is used, for instance, because it saves lives. Again, we get into the "anti-vaccination rhetoric kills people" thing. I'm also aware of the ingredients lists for vaccines (and not what McCarthy claims they are). Again -- not a convincing argument. The dose makes the poison, and the doses of those ingredients in vaccines aren't enough to harm.

    I could continue, but, instead, I'll just refer you to the writings of Orac over at Respectful Insolence, the writings of Ben Goldacre at Bad Science, and the writings of Prometheus at Photon in the Darkness.

  7. "Thiomersol is used, for instance, because it saves lives"?
    How does that happen?
    Thimersol was added to vaccines to prevent contamination when multiple shots were drawn from a vial. It was never used in live virus vaccines such as MMR and live polio.
    In 1999 when the FDA and Pharma noticed the increased mercury burden the increased number of vaccines was creating, they agreed to remove the thimerosal from most vaccines.
    Somehow, even without the thimerosal there is no contamination in the multi-dose vials and the vaccines still work.
    The thimerosal itself does nothing to save lives.

  8. Wow -- impressive set of misapprehensions and half-truths here. I won't address the errors in your history within a comment; frankly, there are too many for that.

    I will, however, answer your primary question.

    As you observed, thiomersol was added to vaccines in order to prevent bacterial contamination. It also works at doing this. As this sort of bacterial contamination is both nearly undetectable in a clinic environment and can kill people, thiomersol saves lives.

    This is not to say that it is the only way to prevent contamination, but all of them have drawbacks -- and these drawbacks can make their use inpracticable. When thiomersol was removed from most vaccines (which was not for the reasons you claim), these alternate methods were used. In the case of the flu shot, thiomersol was the only really practical way to go -- and so it's still used in the annual flu shots (and the H1N1 shot).

  9. If bacterial contamination is both nearly undetectable in a clinic environment and can kill people, thiomersol saves lives, how come it isn't needed in live virus vaccines such as MMR? Aren't they subject to contamination?
    As for the reasons you say I am incorrect about;
    Thimerosal is a mercury-containing organic compound (an organomercurial). Since the 1930s, it has been widely used as a preservative in a number of biological and drug products, including many vaccines, to help prevent potentially life threatening contamination with harmful microbes. Over the past several years,

    because of an increasing awareness of the theoretical potential for neurotoxicity of even low levels of organomercurials and because of the increased number of thimerosal containing vaccines that had been added to the infant immunization schedule,
    concerns about the use of thimerosal in vaccines and other products have been raised. Indeed, because of these concerns, the Food and Drug Administration has worked with, and continues to work with, vaccine manufacturers to reduce or eliminate thimerosal from vaccines.
    You can read the balance of the information at

  10. Just in case you don't read far enough down that link I just sent there are a couple of interesting sentences;
    A weak association was found with thimerosal intake and certain neurodevelopmental disorders (such as attention deficit hyperactivity disorder) in one study, but was not found in a subsequent study. Additional studies are planned in these areas.

  11. [sarcasm]Way to cherry-pick from the page! I couldn't have done better myself![/sarcasm]

    Honestly, you're misinterpreting those quotes -- both of them. The first one basically means that they're moving to get rid of thiomersol because people are worried, not because of actual evidence that it harms people.

    The second is essentially meaningless without the specifics of either study. The fact that they are doing further research is also unsurprising.

    I also note that you ignored the previous sentence: "Preliminary results indicated no change in autism rates relative to the amount of thimerosal a child received during the first six months of life (from 0 micrograms to greater than 160 micrograms)." There is far more extensive evidence than this one example, but I find it interesting that you ignored it while highlighting the subsequent sentence.

  12. I have been meaning to mention that I have to take umbrage with your number one statement.
    "1. "Don't vaccinate your children because vaccines cause autism" demonizes autism, portrays autistics as "damaged goods", and contributes immensely to psychosocial stigma."
    If people with autism aren't "damaged goods", as you say, they would not have a label, aka diagnoses.
    Even though the CDC and Pharma would like for everyone to have some kind of diagnoses, they still don't label "normal, healthy" people with DMS numbers.

  13. So you admit I have demonstrated my point?

  14. Alex,
    Do you know that you were brainwashed by Frank Klein to write the nonsense that you spew? Do you even know who Frank Klein is?
    Frank is the founder of Neurodiversity which exists to prevent anyone from curing autism. The drug companies who poisoned you don't want you to become mentally competent because then you would realize that you can sue the balls off of them for what they did to you.

  15. Mr. Wonderful: No, your statement managed to prove mine.

    Mr. Best: I am well aware of who Frank Klein is. I am also aware of what the neurodiversity movement actually is, and that is most certainly not what you characterize it as. I also might add that autism isn't what you characterize it as, either.

  16. And I would have to say that YOU do not know what autism is because you haven't lived with it. By your own admission, you were diagnosed with Asperger's Disorder at age 12. I doubt that you smear your own crap over walls, pull your hair out by the roots, escape out of your home and walk into traffic as if there weren't a car in the world.
    At the levels of development that Mr Best's son and mine are currently at, neither of them are capable of independent living as I assume you are.
    You are currently employed as a clinician and are a doctoral candidate. While I cannot speak for Mr Best, I know that if my son could achieve that level in a societal and academic achievement, I would say he no longer had autism.

  17. Somebody has pretty blatantly failed to comprehend major aspects of this blog, as demonstrated pretty conclusively by his highly insulting, exceedingly rude, and factually inaccurate post.

    Somebody has also managed to get me to put this blog's comments on moderation, mostly because I haven't figured out a way to block specific users.

  18. I'm sorry if I posted anything that you felt was rude or insulting. I have always thought that the purpose of a blog was for people to provide their opinions on a specific subject.

  19. I will take this comment as a statement that your rudeness was uninentional. As such, I'll point out exactly how and why it was.

    First off, you dismiss my clinical experience and credentials offhand when you state that I do not know what autism is. While I do not generally post a lot of clinical anecdotes to this blog, you should note that my clinical work is with autistic children -- and thus that I am quite aware of what they are like.

    Secondly, you dismiss and belittle my own disability (or disabilities, depending on conceptualization) within the same sentence. Within the field of disability etiquette, this is simply not done. It is phenominally rude, not to mention offensive.

    You also dismiss the importance of development in a variety of matters. For instance, while I've never been fond of feces art (that I can remember), I have a history of "pulling my hair out by the roots", as you put it (the medical term is trichotillomania). I don't do that anymore, mostly because I realized what I was doing and stopped myself... but it did get pretty bad for a while -- I'd pulled out more than half of my hair by then.

    As for escaping my home and running into traffic, there were incidents.

    You also engage in several factually inaccurate statements about my history and where I am today. For instance, your statement that I claimed to have been diagnosed at age 12 is simply false. Your statement that I am a doctoral candidate (a term which has a specific meaning in academia) is also false. I could continue, but believe I have made my point.

    Finally, saying that someone who is able to maintain employment and earn an academic degree is not autistic is simply false. Temple Grandin comes to mind as the most famous example of what I'm referring to, but it's hardly rare to find autistic individuals employed high in the ranks of academia.

  20. My purpose was not to be rude or insulting.

    I believe that what I said was that if my son had achieved your level of education and employment I would consider that he no longer had autism. That would be the autism my son has lived with for most of his 33 years.
    It isn't the autism that our neighbor sees every day in her nonverbal 17 year old granddaughter. Katie wears a diaper most of the time and drinks from juice packs or baby bottles because she hasn't mastered holding a cup or glass yet.

    I compliment you and others for having reached the high in the ranks of academia that you attained.
    In order to achieve your current position you have also gained the ability to interact with and freely communicate with others.
    When my son comes home from his day program I ask him something like "How was program today?" and his reply is "good".
    Then if I ask him what he did there, he replies "what did you do at program?"
    When he attends a social event he does not engage in conversation with his peers. He will sit with them but either says nothing or repeats lines from him favorite Disney or Nickelodeon shows.

    In your November 9, 2009 blog titled
    "About Me" you said "As part of the process of applying to Ph.D. programs, I've had to write a statement of purpose" and later that you "applied to Nova Southeastern University's postgraduate applied behavior analysis program."
    That would make most people presume that you are a doctoral candidate or working toward such a goal.

  21. A doctoral candidate is someone who has completed the coursework towards their doctorate and has passed their preliminary exams. In other words, they only need to complete their thesis to get their Ph.D.

    I, by contrast, am seeking entry to doctoral programs. I am not even a doctoral student -- which is someone who has been admitted to a Ph.D. program and is working on the requirements which a doctoral candidate has completed.

    As for your son, I cannot comment on his specific case as I don't know him. I am, of course, aware of the existence of people like him and your neighbor. I've worked with similar individuals (although not terribly many, simply because of the differences in age demographic -- most of my work has been with young children).

    What you seem to fail to understand, however, is that such individuals are only a minority of autistic people. What's more, such individuals rarely, if ever, have autism as their only "issue".

    I won't get into the appropriateness of the term "comorbidity", but no one is "just" autistic. I, for instance, also have several allergies, serious acid reflux issues, (prescription) drug-induced memory issues, and quite a few other things impacting my daily life. This is not atypical, either for autistics or for people in general, but does complicate things.

    Despite the fact that the belief that the belief that the majority of autistics are mentally retarded is a myth (see Edelson, 2006 for review), this doesn't mean that mentally retarded autistic individuals don't exist. In these cases, those people have two separate disabilities (autism and mental retardation) which add together to be more problematic than the sum of their parts.

    Other autistics have issues due to ill-chosen treatments (e.g. aftereffects of hypervitaminosis, cardiac issues due to Lupron treatment, chelation-induced brain damage), experiences of restraint and/or seclusion, psychiatric drugging, institutionalization, and/or being written off academically.

    I have experienced a number of these (restraint, seclusion, psychiatric drugging, and being written off at school) and managed to get to where I am today despite them. In large part, this is because my experiences in these regards were nowhere near as severe as those of others, but they continue to have a lasting effect on me and on my life.

    It's important to realize that these things aren't autism, but rather things that are also present in some autistic individuals and things which are done to autistics. This is part of why group data is so important; separating one thing out from all of the others that influence any one individual is nearly impossible.

    Or, in other words, the fact that I have a few things in common with your son doesn't mean that we're the same person... or that we'll live the same way.

  22. Mea Culpa. I refered to you as a doctoral candidate when in fact you are seeking a to a Ph.D. program. The point I was trying to make is that you have reached the academic level that you can seek a Ph.D. program.

    You say that you have only encountered a few people with autism who function at the level of Dave and Katie. Maybe That is because the programs you are involved with only deal with children with higher levels of autism. Most of the children I know and have been involved with function at a lower level.
    As far as the idea that some people with autism also have mental retardation, here is an article that says standard IQ test might not show the true intellect of people with autism.
    WISC and Stanford-Binet tests don't truely apply to people with autism for several reasons.
    For one thing, they may simply may not be interested in answering the questions.

  23. Your last paragraph "Or, in other words, the fact that I have a few things in common with your son doesn't mean that we're the same person... or that we'll live the same way." speaks volumes. Since all people with autism are individuals, as are all people in general, who should speak for ALL people with autism? For example, I have a visual impairment. When I was about 45 I started to need glasses in order to read. Other people have needed glasses most of their lives in order to see anything clearly and others have never seen anything in the entire lives.
    So, who should speak for those with visual impairments?

  24. I believe you misunderstand. I have encountered -- and worked with -- many people who "function at" that level or lower. The difference between the majority of them and people like Dave and Katie is age -- I've done most of my clinical work to date with preschool and kindergarten-age children. As such, I have only rarely run into teenagers or adults who fit that general description.

    I am also aware of the evidence that standard IQ tests do not accurately measure the intelligence of autistic individuals. I am also aware of the study referenced in that article -- it was a good read.

  25. Generally speaking, the best person to speak for someone is that person themselves. Failing this, the best substitute is someone close to them. The best people to speak for a demographic group are members of that demographic group -- or former members.

    For instance, the best people to speak for women as a group are women. The best people to speak for African American preschoolers as a group are African American teenagers and adults. The best people to speak for people with visual impairments are people with visual impairments (hence the NFB and ACB -- and note the parallel to events in the autistic community exhibited by NFB resolution 93-01).

    When talking about a group, however, it's not a single voice that matters, but rather the group as a whole. I cannot claim to speak for autistic individuals as a demographic group. The autistic community -- which I am, admittedly, a part of -- does.

  26. In your last paragraph you say "I cannot claim to speak for autistic individuals as a demographic group. The autistic community -- which I am, admittedly, a part of -- does."
    But the title of this blog is "Reasons Why The Autistic Community Should Fight The Anti-Vaccination Quacks -- "
    The "Anti-Vaccination Quacks" you speak of ARE members of the Autistic Community, either themselves or their close family members. And they aren't truly anti- vaccination. They are advocating for SAFE, poison-free vaccines. Most of them did in fact vaccinate their kids and believe that the vaccines caused their problems, whether it was autism, GBS or other conditions.
    You at one point called me rude and insulting for having different beliefs about vaccines from yours.
    But you refer to those who don't agree with you as quacks and trolls, which some people might consider rude and insulting.

  27. First, I suppose I should apologize for taking so long to clear your post. I've been travelling, and have had only sporadic access to the Internet during that time.

    I also probably should add that your post almost wasn't approved. It was a very, very close thing. A number of your statements are both factually inaccurate and highly derogatory (for instance, I have never called you rude and insulting for holding different beliefs -- for dismissing my knowledge and expertise on the grounds that I'm not disabled enough, yes; that's actually on this very page, but I have not done so for holding different beliefs).

    Additionally, unless you have suddenly gained a diagnosis (or started self-identifying as on the spectrum, etc.) without my knowledge, you are emphatically *not* part of the autistic community. You are part of the broader autism community, yes, but that is not the same thing. The people you reference are not part of the autistic community, either... and parents, even anti-vaccination ones, are not necessarily quacks.

    To *be* a quack, you have to actively peddle quackery. This makes Andrew Wakefield, for instance, a quack. Jenny McCarthy is on the borderline, but as she still commercially offers medical advice (via her books), she could be counted as such.

    Also, please stop arguing from nirvana fallacy. Nothing in life is perfect or perfectly safe. This includes both medicines and vaccines. Do I -- or most doctors, for that matter -- believe that vaccines can be improved? Yes, we do, and a substantial amount of research funding goes into doing exactly that. This is a given.

    Finally, I suggest you look into the meaning of the term "illusionary correlation". It explains -- rather nicely -- exactly what is usually going on in the incidents you reference.

  28. Study links the ingredient Thimerosal in H1N1 vaccine to brain injury
    December 18, 10:43 PMAtlanta Alternative

    Neuro Toxicology recently published a new study that lends further credibility to parents and scientist who question the increasingly aggressive childhood vaccine schedule and toxic vaccine ingredients.

    A research team at the University of Pittsburgh found that infant macaque monkeys receiving a single Hepatitis B vaccine containing the mercury-based preservative thimerosal showed significant delays in developing critical reflexes controlled by the brainstem. This was in sharp contrast to the control group who developed normally but did not receive the vaccines.

    Vaccine and Immunization Scheduled Increased in 1991

    In 1991 the government vaccine guidelines were expanded to include a Hepatitis B vaccine for all infants within a few days of being born. Hepatitis B is usually contracted through the use of dirty needles or as a sexually transmitted disease, something most new born babies are not exposed to that early in life. The introduction of the Hep B vaccine was part of a greatly accelerated vaccine schedule that coincides with the drastic increase of autism in American children.

    In 2000 thimerosal was removed from U.S. Hepatitis B vaccines but was not recalled from the market immediately. The toxin continued to be administered for approximately two more years and still remains in other vaccines including all multi-dose shots for both the seasonal flu and H1N1 swine flu vaccinations.

    Health officials currently recommend pregnant women and children as young as six months old receive both vaccines for seasonal flu and H1N1. Each patient will receive as many as four separate flu shots. “This also doesn’t take into account that nursing infants may be exposed to additional mercury through breast milk should both mother and baby be vaccinated,” says National Autism Association (NAA) board chair Lori McIlwain. “This study’s outcome confirms that such an over-the-top toxic vaccine schedule is an assault on the developing brains of our children.”

    According the National Autism Association the study specifically found:

    Thirteen newborn rhesus macaques were given a Hepatitis B vaccine containing a standardized dose of thimerosal adjusted for their weight, four received a saline placebo, and three were not given any shots.
    Vaccinated animals experienced a significant delay in the acquisition of three survival reflexes compared to unvaccinated animals. Root, snout, and suck reflexes, critical to animal survival in the wild, were delayed in the vaccinated macaques.
    These reflexes are controlled by the brainstem, a vital part of the brain that regulates automatic functions such as breathing, heart rate, and intestinal activity.v — Neonatal responses in unvaccinated control animals were not delayed.
    The delay in acquisition of three of the four survival reflexes was not contingent on birth weight or gestational age.
    Parents of children with autism as well as parents for natural living have been trying to health agencies to conduct studies comparing the health of vaccinated children against that of unvaccinated children. Parents of children with autism have lobbied governments and the FDA to remove thimerosal from all vaccines, without results.

    “This study underscores the lack of appropriate government action to ensure the safety of vaccines. Had our government agencies conducted the most basic research on the implications to children’s health from the vaccines they rigorously promote, they could have spared thousands of children the neurological injuries they endure today,” said Ms. McIlwain. “It’s shameful.”

  29. First off, the account of the results of any study given by any anti-vaccination group is automatically suspect, as is any mass-media account of science. I prefer primary sources -- meaning the text of the study itself.

    Of course, the "Atlanta Alternative" is not a publication I'm familiar with, meaning that I cannot comment on the reliability of its content. The name, however, does not exactly fill me with confidence.

    I am presently looking up the journal in question and the article referenced. I will comment further once I have found them.

  30. Okay. Browsing the abstract, a few things stand out.

    First off, the authors had a number of conflicts of interest. Not only was Wakefield one of the authors, but the lead author was from his company.

    Second: Total n for the entire study was 20, with three comparison groups. The smallest of these had an n of 3. This results in an analysis which is drastically underpowered to detect the sort of effects that they claim to, especially given the number of statistical adjustments involved.

    I suggest Ioannidis, 2005 for further reading on what I mean by this ( ). It's a good read.