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Sunday, September 20, 2009

A Critique of Ginger Taylor

Lately, my attention has been brought to the writings of a Mrs. Ginger Taylor, who describes herself as the following on her AoA article:

Ginger Taylor holds a master's degree in Clinical Counseling from Johns Hopkins University that Dr. Gorski thinks she should not mention so much. She is an autism mom with a really messy house because she believed that those pretending to serve man kind actually were and spent way too much time trying to get them to look at evidence that a generation of children are being severely injured by over vaccination and pollution. She blogs at Adventures in Autism, where she will be absent for a bit in order to clean up her life after all the time and energy she has wasted on posers who don't give a shit about sick children. Her current projects include praying to God to take away her bitterness and anger, and playing Farm Town with her sons where her blueberries are at 23%.

Her article on the AoA site is what can be summed up as a general complaint at the lack of concern and appropriate response to a letter she wrote to several professionals. She has posted the exchange on her blog HERE. She has mentioned responses to this exchange by people who weren't originally addressed in the original letter. Well, to that, I'll have to remind her that when something is posted onto the internet, it becomes part of the public domain, of a sorts. Yes, one can claim copyright laws, but once published publicly, everyone can see it and everyone is allowed to comment.

And so, this individual, who happens to be autistic, will comment and examine Mrs. Taylor's words.

Okay, first we have the usual story: child gets vaccines as per doctor's orders, child is diagnosed with autism, mother believes the vaccines caused her child's autism and feels betrayed by science-based medicine.

May I point out that Mrs. Taylor has a Master's in Clinical Psychology? This means that not only has she gone through the undergraduate program, but she has also gone through the graduate program. The next level in post-secondary education is doctorate, however, that is for people aiming for certain jobs, research and interests. An undergraduate degree develops critical thinking skills, the ability to take information and apply it to different situations and be able to argue one's stance. A Master's degree means that a person has written a thesis and successfully presented a valid argument. Someone working towards their doctorate degree would then present work that is potentially publishable in peer-reviewed journals, and then begin on, well, doctorate work. The particulars of this system may differ in the various departments, however, in every department, an undergraduate degree depends on the ability to do appropriate research, make the right documentation and present critical thinking skills. Also, I might add, that university libraries are not reserved for just current students, but are open to every person in every field to do research and expand on information. This means that should Mrs. Taylor wishes, she can go to her public university library, do research and have the skills to properly cite and document the information.

Let's look at the sources of information that Mrs. Taylor has read about autism:

Vaccine package inserts, a few studies, AAP/CDC web sites, a few media accounts

Hmmm, I can't help that she doesn't mention which studies and which media accounts she has been reading. Given that she refers to the question of whether "autism, an autoimmune disorder where in the immune system attacks the central nervous system" being caused by the Hepatitis B vaccine, I can't help but suspect that she did not read any official documentation about autism, or even looked it up in the DSM-IV-TR. If she had done so, as someone with a Master's in Clinical Psychology would be able to do since even an undergraduate in Psychology would be able to do so, then she would know that autism is NOT an autoimmune disorder, but is considered to be a Pervasive Developmental Disorder that is neurological.

She then refers to her pediatrician not looking over highlighted vaccine inserts and the lack of response from the American Academy of Pediatrics, apparently using her experiences as evidence that the entire field of health professionals are inconsiderate of parent's concerns regarding vaccines.

Mrs. Taylor then cites David Kirby's Evidence of Harm. I point out here that Mr. Kirby is a journalist; it's his job to sensationalize every little thing that may turn out to be a selling story. So, at best the information that he provides is ignorant and at worse is downright lying.

From what I can tell from the research that Mrs. Taylor has been doing, the data in which she is using is also quite dated. Meaning, that the way the industry ran many many years ago is not necessarily the way in which it runs today. For example, safety protocols are always being re-applied, processes are updated and knowledge is constantly being discovered. I can't help but notice that many studies that are being quoted are quite dated and therefore are incorrect in today's context. Not that she mentions very many studies or where she is getting most of her information, as an academic should.

However, the rest of her post is largely her grievances over individual science journalists and bloggers whom disagree with Mrs. Taylor on 1) the definition of autism 2) the probable cause of autism and 3) the treatments and supports that autistic people need. Apparently, some of these people have viewed her as yet another of the crowd that believes mercury/vaccines cause autism and have treated her un-courteously and condescending, causing her to be very angry and frustrated. She excuses her public display of behavior with

And that anger apparently began to push me over some line somewhere, because today, three weeks later, I just don't care about giving myopic, immature, biased and unprincipled "science writers" the benefit of the doubt or a hundred more chances any more.

As she reports, Mrs. Taylor "asked them to do some self-evaluation. Demanded really" and the response was the following:


The response from "them" to my challenge that their dismissals, their insults, their lack of insight into themselves, their inability to self-correct and refusal to examine and address "our" concerns might be the problem, was to dismiss me, insult me, demonstrate an extreme lack of insight into themselves, display an inability to self-correct and to refuse to examine and address my concerns.

They responded to my accusations of failing to live up to the standards of their chosen industries, by failing to live up the standards of their chosen industries.

I called them biased, and to prove me wrong, they showed me their bias.

Giving Mrs. Taylor the benefit of the doubt, I followed her link to the letter she posted and sent to Lori Kozlowski. At the beginning, it seemed like a very reasonable response to Mrs. Lori Kozlowski's article. However, the letter slowly becomes what can only be described as an attack at the science-based medical community at a whole, based on the actions of a few skeptics and critics of the vaccines-causing-autism manufactured "controversy". Mrs. Taylor, in presenting her arguments, fails to present proper documentation for her sources and barely acknowledge or even consider the scientific data that has been gathered since the first time that these concerns were addressed to scientists in 1998, over ten years ago. When she does acknowledge the studies that have been done for her and others benefit, she does so to remark on supposed behavior of the scientists involved and does not even address the findings, never mind treat the subjects in a professional manner befitting of her academic status.

Instead, in her letter to a few of the journalists and skeptics, she makes a comparison of science with religion, calling on scientists to have a religious experience in their fields, forgetting that the nature of science is not to be about the individual, but rather about the entire population as a whole, and that scientists may not even be religious. Actually, it's very likely that the majority of scientists are not religious and such a demand for soul searching and conversion to faith-based studies is quite inappropriate for the field.

I am not going to address the issues concerning the studies, because I am not a scientist. Nor am I a journalist, or a science journalist/blogger, whose job is to write about the latest science news in an attempt to relate said news to the general public. However, as an individual, I can see the harm and immense cost (that would have to cover entire continents to be done properly as has been stated) in attempting to do some of the studies demanded, not to mention irresponsible to put so many people at risk of disabling and even fatal diseases. However, if they want to argue the specifics of such a study, they should address this and work with scientists to achieve a reasonable compromise, since previous scientific studies in the past have not satisfied people such as Mrs. Taylor.

Now, looking at Mrs. Taylor's conduct, in the entire letter, I did not see evidence of an objective academic who was using her critical thinking skills and acting in a professional manner in addressing other academics. I did not see the level of maturity expected for her age, the professionalism expected for her profession, nor the proper documentation for citing and the thorough research that is necessary for a Bachelor's degree, never mind for a Master's degree.

Returning to the entry with Mrs. Taylor's documentation of the exchange, she continues to respond subjectively to the responses that she received to her very subjective letter, and thus "proves" to herself and the rest of her reading public how dismissive the scientific journalism community and the science-based medical community is towards concerned parents. However, I may point out that no where has Mrs. Taylor demonstrated that these few individuals that she addressed actually represents the entire fields she attacks, nor has she demonstrated the objective skills and professionalism that these few apparently "lack" in their responses to, not professional or academic literature, but a personal letter.

Neither does Mrs. Taylor frame her concerns in the contexts to actual data gathered within the last ten years of studies that does address her concerns, rather dismissing the data as being made up information based on the fact that pharmaceutical companies fund the research, and with no regard to the actual scientific processes that renders funding sources as being irrelevant. Instead, Mrs. Taylor fires off her questions towards journalists and science bloggers without citations and references other than to her own blog and once to a newspaper article, and does not even a proper give a frame of reference.

To her credit, one of the responses that Mrs. Taylor was blunt and perhaps a tad unprofessional (to which Mrs. Taylor response with a barrage of questions, forgetting that such studies are easily accessible through university libraries and that in all science-based studies, there have been no indication of autistics having any unusual levels of health difficulties, including autoimmune, seizures and gastrointestinal issues, than the general public), in; however, the rest of the responses she received that she displays shows journalists responding appropriately to questions about their articles, their writing practices concerning science news, and a plain all-out attack on themselves as professionals. At one point, Mrs. Taylor urges Lori Kozlowski to quit journalism, as well as Ginny Hughes when she politely and nicely asks whether any of Mrs. Taylor's readers would be interested in a poll that might actually be in their favor.

In general with her letters and responses, Mrs. Taylor declares that not only is the LA Times "dying", but "...morality, honor and wisdom in scientific journalism is dying" due to the actions of the journalists to favor science-based medicine. She finishes her entry with one last jab at the original target, Chris Mooney, who was the author interviewed in Lori Kozlowski's article profiling his book, claiming that he and other scientists were trying to sell their "view of science" and that she "was their audience".

Not exactly Master's degree material, Mrs. Taylor, and not very professional of you, should you be wanting to present yourself as better than your opponents.
.

15 comments:

  1. This...is easily the best work you've written on this blog thus far. I hope that you have a way to forward this onto Ms. Taylor so she can take a look at such a detailed, point for point examination of her supposedly reasonable arguement.

    Well done!!

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  2. Hi,

    I have not read the whole piece, but will tomorrow, but wanted to clarify something that you address.

    The section of my piece when I refer to evidence that you rightly pointed out is dated, was what I initially read as I was beginning to research the vaccine/autism connection... it is by not by any stretch the body of evidence I am looking to today.

    My point was that I had lots of questions that arose from this initial inquiry, and when I went to the establishment to get answers, I got a cold shoulder.

    This all refers to things that happened five years ago.

    I am sorry if I was not more clear.

    My point is that I went to the mainstream science community first, was turned away, and for the last five years (beginning with that episode, up until this last exchange last month) it has all been the same.

    I just got fed up with it after five years and published a sample of the exchanges that I had gotten.

    And this post was written to my usual audience, that has presumably read all that I have written about the research and such in the last five years. So I can see how, since I left out the entire middle of the journey, you might think that the beginning and end was all their was.

    And please keep in mind, this was not a piece from the professional/objective point of view of a Therapist, but an angry mother who knows enough about science to know shenanigans when she sees them.

    Will examine this with fresh eyes tomorrow morning.

    Thanks for looking at my piece.

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  3. Corina,

    Well reasoned and diplomatically done.

    Ginger,

    When the angry mom trumps the reasoned academic in approaching experts in their fields, you've already lost a great deal of credibility. Had you not harangued people, believing with a fervor that your righteous anger should trump the day and cause them to have a wake-up call to see the world through your eyes, perhaps you would not have gotten negative feedback or what you feel is dismissivesness back. Had you not recast autism into a disease process that no one in mainstream medicine agrees on, you might have gotten further. Had you not relied on a journalist's book as what appears to be your main source, your advanced degree might have received more appreciation.

    Corina is correct; you didn't use that knowledge your degree should have provided you, especially considering a master's in child psychology should have provided you a level of expertise in developmental delays. When you yourself do not use the knowledge base your degree conferred, why would the people you are attacking acknowledge it?

    In addition, as someone with a graduate degree in psychology, perhaps when you have fresh eyes, you can reread that massive tizzy of an essay and that biography at the end of the AoA article that approaches a huge pity party and attempt towards martytrdom and think of what the psychologist in you would tell that angry mom in you.

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  4. That reminds me, Mrs. Taylor, have I gotten your title correct? as in, you are a Mrs.?

    Also, I appreciate your honesty and your response to this. However, I believe that we should have a civil discussion. So yes, please, have a nice cup of tea or relaxing beverage of choice, and come back to this refreshed and with time.

    If you feel that you are too angry, then please, take your time to relax and get the anger out before returning to the discussion.

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  5. Corina,

    Did my last post seem angry in any way? I didn't think so. Please don't read it with any anger intended.

    I don't know if you have ever read any of my writing before this piece, but I am actually someone who has spent the last five years trying to drain the anger out of these discussions so that they could be rational and move forward in understanding.

    There have only been a few ocassions that I have "written angry".

    That is why this piece was highlighted. After five years of attempts at rationed discussions with journalists, public health officials and members of the "skeptic" community, where clearly the people I was trying to have reasoned disucssion with were not acting in good faith, I just had enough.

    To have this piece be an introduction to me is well.. probably not the best representative sample.

    I probably should share that I do not have the same level of frustration with the ND community by any stretch. We may dramatically disagree on causation and treatment, but we completely agree that those with autism have value, should have as much say in their own destiny as possible and that the rights of those with ASD should be respected and defended vigalently.

    KW... reason and anger can coesist quite well together. Emotion and reason are mutually exclusive and can operate independently of one another.

    Yes... this is a very emotional piece, but if you feel the reason in it is lacking, then let me know where so that I might have a chance to clarify or or correct it.

    So, yes I am still angry.. but I am not angry with you guys.

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  6. “If she had done so, as someone with a Master's in Clinical Psychology would be able to do since even an undergraduate in Psychology would be able to do so, then she would know that autism is NOT an autoimmune disorder, but is considered to be a Pervasive Developmental Disorder that is neurological.”

    This comment really runs to the heart of the problems in the state of “autism” definition, research and approach, and it informs on the vast disconnect between my community (treating parents) and yours.

    You are correct, “Autism” is a DSM behavioral diagnosis. That is the problem.

    “Autism” is just a bunch of behaviors and the diagnostic criteria does not address the underlying physical illness that we are seeing in our children. I have made the argument in the past that using the word “autism” is about as medically accurate as diagnosing someone with “the vapors”. If some one closes their eyes and drops to the floor, are they hemorrhaging, are they pregnant, are they drunk?

    “Autism” is a useful label educationally and socially, but medically it has no anchor points. No official biomarkers.

    And we believe, because examining and comparing our kids medical histories, that “Autism” is actually several different physiological syndromes. Or perhaps more specifically, there are several different biological states that have as a result the behavioral symptoms of “autism”.

    I never get into an argument with a parent or adult that claims that their/their child’s “autism” was not vaccine induced or can be treated, because they may be absolutely right. Fragile X “autism” is absolutely genetic. Regressive “autism” after vaccination where a child clearly crashes, begins seizures, looses all skills, has lab tests that show metal toxicity, an active autoimmune process and scopes of GI damage, which subsequently receive compensation from the Vaccine Injury Compensation Fund is clearly an environmental disease.

    My (sometimes angry) question is… how in the world are both of these things called “autism”, and then bundled together to be studied for causation and treatment? It makes about as much sense as doing research on severe mental retardation and using as your sample both people with downs syndrome and people who were hit by drunk drivers when they were in college.

    So technically no… autism is not an autoimmune disorder… except that my son’s autism is an autoimmune disorder, and thousands of children’s lab results show autoimmune reaction and thousands of children with autism who are treated for autoimmunity show abatement in their “autism” symptoms.

    So a lot of the problems that we have (your community and mine) are over semantics. Semantics that the medical establishment should have worked out long ago, and the media should have held the medical establishment accountable for doing so that we are still not having these arguments of what “autism” is.

    Frankly, I think there is a case for loosing the word autism all together in medical practice.

    cont...

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  7. ...

    And it plays out in our homes every day. Chandler is seven and has not been actually sick with a virus in three years. This summer he got the flu (probably H1N1) and an actual fever. When he did, and his immune system actually had a job to do, it left his brain alone for a day or so and I got the most wonderful eye contact and quick response from him to my questions. I just sat with him and drank in the eye contact and asked him as many questions as I could becase I knew that window would close when he got better.

    And that is a common experience for many families. But not all. So clearly, autoimmunity is not responsible for every case of “autism”.

    But our community’s question is, what percentage of people diagnosed with “autism” have this autoimmunity, neuroinflamation, GI damage, toxicity disease that doesn’t have a name but is called “autism”?

    Because what my son has is a medical disorder. A whole body syndrome that affects his functioning and cognition. Not a “brain disorder”. (I have not even touched on his GI problems… when he was two and we put him on the GFCF diet, he began making eye contact, answering to his name and having normal bowel movements with in 48 hours).

    And my son’s illness may not be what you have. If hearing about GI problems and autoimmune symptoms does not resonate with you or your experience, then why should you both be described as having “autism”?

    Further, what the adult ND community has that has been labeled “autism”, and what the massive wave of children diagnosed with “autism” have, might be two different phenomena. Genetic “autism” may exists and stayed stagnant, where environmental induced autism has grown exponentially. Our two communities might be so angry with each other for the way they define each other because they are actually two different communities that have been mislabeled as one. Does that make sense?

    So part of my anger is that the powers that be have been able to get away with keeping this vague, unhelpful “autism” tag alive, rather than recognizing and naming a medical disorder which results in “autism”.

    But all of this would have been understood by my usual readers, as we all have the same beef.

    cont...

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  8. Would you like me to pull some of the research on autism and autoimmunity? I can if you are interested, but my piece was not about research, it was really about the media’s refusal to earnestly look at the research, and look at research with a critical eye.

    The autoimmune connection is becoming pretty firmly established. You can go to pub med and type in “autism autoimmune” and see for yourself.

    Also… I have a link to the Maine CDC Autism conference on my web site. Martha Herbert gives a good intro on the evolving understanding of autism that I would encourage anyone who is interested in causation and treatment to see.

    But honestly, if you are an adult with autism and don’t want anything to do with treatment options, or causation discussions or any of this part of the ‘autism’ world, I have no problem with that at all.

    Parents like me (and me specifically) are very medically focused and tackling all the problems in the bodies of our little ones is practically a full time job. But its really worth it because when they are well, they are so much happier, so much more engaged with their world and most importantly, not in pain and discomfort and sick all the time.

    In my uber medical focus (and to be honest, just keeping my son safe from all the dangers that he just cannot see and rushes towards), I have not engaged the ND community much (except in advocacy efforts for individuals) and frankly I am not versed in the discussions that are going on in ND land or what your understanding and experiences are with all the things we are focused on. So please forgive me if I am telling you stuff that is already in your lexicon.

    My focus is too narrow in this respect, and I attribute it to the fact that my son is still young and well… not completely healthy yet, so my world had just not expanded to issues beyond early elementary school much yet. As he is getting older though, they are on my radar.

    So again… while I am angry with the hatchet job that is being done in the media on our kids health issues, please don’t generalize that to you guys.

    I truly think that the disconnect between our communities over causation and treatment is unfortunate, because we have much more in common than we do in opposition. After all, all the treatment that I am doing with my son is so that he can one day advocate for himself as you guys are and connect with others as you guys do. Right?

    And sorry if I am doing any stereotyping, as I know that is verboten ;)

    More when I have time later… again, thanks for reading.

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  9. also...

    The CDC/AAP et. al. are now recognizing that GI problems are associated with autism.

    http://www.medicalhomeinfo.org/health/Autism%20downloads/AutismAlarm.pdf

    The "autism alarm" screening notice that goes out to pediatricians now recommends looking for GI problems as a part of the initial assessment.

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  10. and KW...

    In the last five years I have approached from every possible angle. They are a brick wall. There is no approach that they are open to.

    Doesn't matter how professional, angry, reasoned, gentile, harsh or even if I offer them a doughnut... there is no approach that garners the appropriate response from them.

    I five years of email I could share with you.

    They have made up their minds that they are not going to look at this. Maugh's reaction is proof of that.

    And Gorski... I have been polite and professional with him since 2004. He actually wrote to me after I posted this piece and told me that he was disappointed that I posted his emails and had considered me an honorable person before that. Go back and read what he wrote about me on his blog, the conclusion of which was that I didn't matter. I didn't count. That is how he treats someone that he privately admits is "honorable".

    Would they have responded differently if I was cooler? Can't say for sure, but I doubt it. Lori was all about getting hits, the truth was not on her radar. Mooney has blown off earnest attempts at debate in the past from others. Mooney also mocks parents like me publicly. Sharil? Who knows?

    But Gorski and Hughes... I had already worked to earnestly engaged them... Dr. Gorski going back five years... I have been a sweet as pie to them, and they just run roughshod.

    This is about who is earnest... who really cares about kids and adults with autism, and who is just trying to make a name for themselves.

    People who really care about the impact their words have on the lives of people who are struggling don't behave like Mooney, Gorski and this crew.

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  11. very well done Corina. It is nice to see dialogue afterwards as well. I look forward to your response. I will say this about my kids though...I have four. None of them have fragile x...all of them are extremely healthy. three of them are on the spectrum-
    Autism, p.d.d.(nos) and aspergers. I am more interested in making the world a more accepting place for my kids than in arguing causation. I have never thought they were "stolen" "empty shells" or needing "recovery"..there is a whole lot of money being made on those words as well...My children work very very hard-because I ask them to. They also thrive. We have done nothing medical or biomedical..I find it maddening when someone tells me they aren't autistic "enough" maddening.
    I absolutely agree that many people are trying to make names for themselves-and careers. I find it fascinating that adults on the spectrum are not considered-their experiences, thoughts, ideas-that is what the majority (not all) of the so called autism parents community run roughshod over-those are the people whose voices SHOULD count the most.
    sorry if this is a little fragmented-I am holding a three year old as I type...or she's holding me..either way it's making typing interesting. :)

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  12. Ginger,

    "...reason and anger can coesist quite well together. Emotion and reason are mutually exclusive and can operate independently of one another."

    Perhaps you will be able to clarify these sentences for me? Anger is an emotion; if it is mutually exlusive from reason, then it can not operate in conjuntion with it, so your statements are contradictory.

    Anger clouds judgment and gets in the way of sound reasoning. Perhaps your emails in your post and much of what you wrote at AoA and in the rest of your post on your blog reflects a new response that you have previously not engaged in with these individuals; I have no way to judge, nor the time to read all of your blog, although I have read it upon ocassion.

    You should have adequate understanding of human nature, though, with your professional background to know that the blog post and the article at AoA will do nothing to further the medical establishment or the media listening to your claims.

    "This is about who is earnest... who really cares about kids and adults with autism, and who is just trying to make a name for themselves."

    Whether you believe that only those who agree with you that your son's (and your audience's children's) autism is in fact an autoimmune disorder are in it for the kids or would include those parents of autistic children as well as autism-related professionals who disagree with your ideas of autism, I cannot say. This is something you should clarify. It strikes me as emotionalism and not reason. Gorski isn't making a name for himself off of autism or vaccines, and he's not making an income off of it. Kirby is. Kirby's selling books off of it. You'll forgive me if I doubt his desire to help the kids. You'll forgive me if I have my doubts that AoA, who derides anyone who disagrees with the autism/vaccine link as pharma shills and sheople dogs, is in it for the kids, especially with their need to hawk unproven treatments and collect their money from the nutraceutical companies.

    And you'll forgive me if I wonder if this isn't somehow more about the parents than it is the autistic individuals.

    What I do know is that autism is not a progressive disease process; it is a neurological difference, and that imaging studies provide more detailed information on how the autistic brain differs from the brains of control subjects with each passing year.

    I don't know whether your child has an autoimmune disorder, nor whether he is an ill child. I know that no reputable, mainstream scientist considers autism to be a progressive disease process.

    I know that my three autistic children are not ill, not sick, and not vaccine damaged. They are wired differently from the so-called norm. I know that the anger and rampant emotionalim of parents who have children with special needs and who feel the need to rage at governmental and industrial conspiracies to harm an entire generation of children DO NOT help my children or any other special needs children or adults, for that matter.

    I know the company you keep, and while I won't assume that all the views at AoA reflect your own, when you preach to them as if they were the choir and take your high fives from them, you are perhaps not reflecting as much a concern about the children as you might think.

    Anger and vindication may feel good, but I'm not sure they are terribly productive.

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  13. Kim, just mentioning that this sentence hurt my brain for a couple of minutes:

    "Whether you believe that only those who agree with you that your son's (and your audience's children's) autism is in fact an autoimmune disorder are in it for the kids or would include those parents of autistic children as well as autism-related professionals who disagree with your ideas of autism, I cannot say."

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  14. I worked on it for a minute to try to get it streamlined, but ran out of time. It hurt my head to, but you should have seen how tortuous it was before I edited. I am the queen of convoluted sentences. I have a 129 word one I wrote that I use to point out the opposite of conciseness in my freshman comp class.

    How about this:

    To Ginger:

    I don't know if you would include those who disagree with your theory regarding autism as an autoimmune disorder caused by vaccine injury within the body of people you think are in it for the kids.

    I have the sense from having read some of Ms. Taylor's writings that she would be disinclined to do so.

    Any better?

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