Warriors, Diplomats & Bandwagon-Jumpers · 2005-07-26 11:11

Saturday morning I had an opportunity to read Robert F. Kennedy, Jr.’s latest article about the supposed link between autism and thimerosal, a preservative used to maintain sterility in multi-dose vaccines. First featured on The Huffington Post, it was then picked up by Yahoo, where after a day’s travel, I had a chance to take it in. There wasn’t much new there; it was the same grandiose vision of a nefarious, multi-institutional plot to conceal the supposedly iatrogenic nature of autism—a distinctive pattern of human development that, contrary to the assertions of autism-poisoning crusaders, is as old as the hills, and predates modern medicine.

The real news in the article was the extent to which The Daily Show’s host, Jon Stewart, appeared to have uncritically swallowed Mr. Kennedy’s arguments, not taking the time to consult either parents or professionals who might harbor a more nuanced perspective on the controversy, a more accepting attitude towards their family member’s disability, and a more charitable opinion of those who have supported preventive medicine through vaccination initiatives. This was not readily apparent in the televised interview; Stewart generously allowed Mr. Kennedy to do most of the talking. But in RFK Jr.’s follow-up article, Stewart was quoted as saying backstage,

if the story is true, the perpetrators should have their skin abraded with multiple incisions prior to being dipped in salt brine.

Stewart was not quoted on what should happen to the perpetrators of the current hysteria over vaccines if their stories are not true, or if their conclusions are in error, and if widespread acceptance of the antivaccinationist arguments promoted by many active participants in the crusade lead to ill-informed parental rejection of all vaccinations, with a subsequent resurgence of epidemic infectious diseases, and increase in numbers of those killed and maimed by those diseases.

Mr. Kennedy’s piece ended with this hair-raising finale:

A more appropriate punishment would be to force them to spend time in the lower level special education classes now bursting at the seams across America and see the autistic children lying on the floor screaming, many of them in dire agony from autistic enterocolitis.

This last sentence prompted me to leave a comment on Yahoo’s discussion board. If Mr. Kennedy and his associates would stick to arguing their case with facts and science, I might not respond to their statements as viscerally as I tend to do. It is their persistent indulgence in hyperbole and histrionics that riles me to no end.

Here’s what I had to say:

When, when, WHEN will the inflammatory rhetoric on the subject of autism end? When will Mr. Kennedy take a breath and consider the fact that the great majority of parents of children on the autistic spectrum have no reason whatsoever to attribute their children’s autism to a vaccine reaction? After an autism diagnosis, a lot of us eventually recognize that we have given birth to offspring a whole lot like ourselves, or others in our own generation, or in our elders’ generation.

Different people have vastly different experiences, and respond in different ways to their family members autism. Some seek scapegoats; some end up looking in the mirror and up and down the family tree. Mr. Kennedy is representing the position and agenda of a small, vocal, highly mobilized subset of the autism community, but he does not acknowledge this in his public statements; rather, he makes sensationalistic generalizations about all people on the autistic spectrum, to their ultimate detriment. Both autistic and neurologically typical children can suffer from GI problems, but the majority in both categories do not. What good does it do for any autistic person to have Mr. Kennedy broadcast melodramatic images of autistic children screaming on the floor in agony, their families “shattered” because they include an autistic child? (Yes, “shattered” was the term he used on The Daily Show.) What does he think our lives are, a soap opera?

I’ve been blogging about this at Neurodiversity Weblog.

Several hours later, I returned to Yahoo to check out the discussion thread, and found the following comment:

Kathlenn (sic) Seidel should have herself tested for mercury poisoning. Any parent who can not figure out that their autistic child is most likely suffering from mercury poisoning is too stupid to have children. Refusing to accept the fact that the autism epidemic has been caused by mercury just demonstrates a failure in reading comprehension. Any parent who is not chelating their autistic child is engaged in child abuse. Ms Seidel should shut up until she knows what she’s talking about.

Well, speak of the devil, I said to myself. This gem of diplomacy was the work of “bettwice33,” a.k.a. John Best, Jr. – one of Generation Rescue’s two “Rescue Angels” in New Hampshire, and self-styled citizen-diplomat. Only three days before, I had had the dubious privilege of hearing Mr. Best speak at the “Power of Truth” rally held outside the State House in Concord, a satellite rally connected to the slightly larger and more widely publicized “Power of Truth” rally held in Washington D.C., aimed at increasing public awareness and local support for the autism=poisoning crusade. Originally, I had not planned on attending the event in Concord, but that changed once I learned that Mr. Best would be speaking there. I have been digesting his extremist statements for several months now, and wanted to hear how he might present his views publicly, to those who might not already be converts to the autism=poisoning gospel.

As with RFK Jr.’s latest article, Mr. Best’s speech at the rally offered few surprises. I did not transcribe his presentation, but can affirm that his profoundly bitter message and tone were very much in keeping with his previous public statements. Here are a few.

“Anyone who is not chelating to get rid of the mercury is guilty of child abuse”—a “Rescue Angel” speaks about parents, doctors and infectious disease:

Parents.com
bettwice33
Re: why is there bashing and controversy on the Autism Board????
Posted: Jun 3, 2005 12:28 PM
The problem is that doctors keep telling people that autism is not caused by mercury to cover their asses. They screwed up by giving our kids way too much mercury. Those of us who know this don’t like seeing unknowing parents allowing their kids to rot in the abyss of autism. Wake up and smell the coffee is approprite. Anyone who is not chelating to get rid of the mercury is guilty of child abuse. Every doctor who is not telling their patients to chelate is guilty of malpractice. There was no autism until Eli Lilly started putting mercury in vaccines. Aside from fragile X which some say is not really autism, it is all caused by mercury. Any parent who listens to the doctors tell them that there is no known cause or cure for autism is too damn stupid to have kids.

Parents.com
bettwice33
Re: thought I would find insight here
Posted: May 19, 2005 11:14 AM
...Doctors are the ones who put the mercury into the kids and their opinions in this matter are not to be trusted. Ignore them and help your child.

Parents.com
bettwice33
Re: Why don’t more Drs. believe in alternative treatments?
Posted: May 18, 2005 9:06 PM
...when we all cure our kids via chelation, the medical profession is going to look like a bunch of fools for negligently poisoning all those babies. Are you a doctor? If so, how many babies did you poison by injecting too much mercury into them? Will you inject yourself with a proportional ammount to prove it is safe?

Parents.com
bettwice33
Re: AUTISTIC SPECTRUM DISORDERS
Posted: May 19, 2005 9:36 AM
... The risks that you discuss are ludicrous. Having the childhood diseases like measles, mumps and rubella help us develop our ability to fight off diseases. They are not the scourge that the money-grubbing vaccine industry would have us think.

“It is counterproductive to our position”—a “Rescue Angel” speaks about environmental sources of mercury:

http://groups.yahoo.com/group/EOHarm/message/926
From: “John Best Jr”
Date: Fri Apr 29, 2005 10:31 pm
Subject: Re: David Kirby speaks in Minneapolis on May 25th
...Since there was no autism epidemic when the whole country was heated by coal, I view any talk of mercury in the air as a problem as utter nonsense. It’s just propaganda to deflect blame from pharma and I don’t buy one word of it.

http://groups.yahoo.com/group/EOHarm/message/9892
From: “John Best Jr”
Date: Sat Jul 2, 2005 11:12 am
Subject: Re: [asd_solutions] chelating with mercury fillings
If mercury from power plants is so dangerous, how come there was no epidemic of autism when the whole country was heated by coal? I view any talk about this as a link as simply a ploy to draw attention away from vaccines.

http://groups.yahoo.com/group/EOHarm/message/9917
From: “John Best Jr”
Date: Sat Jul 2, 2005 2:11 pm
Subject: Re: [asd_solutions] chelating with mercury fillings
...I also think it is counter productive to our position to accept coal-burning as a factor.

“I want to be compensated”—a “Rescue Angel” speaks about justice, revenge, and money:

http://groups.yahoo.com/group/EOHarm/message/10208
From: “John Best Jr”
Date: Mon Jul 4, 2005 12:47 pm
Subject: Re: Time to show your cards: A letter to Pharma
I wouldn’t offer these swine anything. The 51 criminals who were at Simpsonwood should all be in prison. I don’t JUST want mercury out of vaccines. I want them to pay for me getting it out of my kid and I want them to compensate him for the portion of his childhood that he has missed. It might not work, in which case I want every dime they have for taking his life away. And, I want to be compensated for saddling me , my wife and my other kids with autism. I want to be compensated for the work I have missed and the jobs I have lost because my wife couldn’t handle my son and came screaming into my workplace for me to leave work and help her. And then I want them all to hang!

“Call it treason if you will”—a “Rescue Angel”’s mission of citizen-diplomacy:

http://groups.yahoo.com/group/EOHarm/message/4809
From: “John Best Jr”
Date: Fri Jun 10, 2005 1:28 am
Subject: Re: the media!!
...We should also be sending word to the Chinese letting them know that we poisoned their kids. If their Premier or whatever he’s called hasn’t been paid off, he could probably get some press coverage in asking Mr Bush for some answers.

http://groups.yahoo.com/group/EOHarm/message/7795
From: “John Best Jr”
Date: Wed Jun 22, 2005 8:56 pm
Subject: A Different Approach
I just wrote to the Chinese Government website and a Chinese newspaper with a brief synopsis of the facts about mercury and autism… I think if their Premier knows the truth that Mr Bush will find it a little more difficult to lie about it.

http://groups.yahoo.com/group/EOHarm/message/7812
From: “John Best Jr”
Date: Wed Jun 22, 2005 9:49 pm
Subject: It’s Time to Take Our Message Global
...We can bring Bush and his cronies to their knees if we can alert the leaders of every third world country that the US drug industry is poisoning their children, that is, if these people have not already been paid off. How would Bush fare at the United Nations if every African and Central American leader showed up with the Geier’s and some other experts to present the truth about thimerosal to the world?

http://groups.yahoo.com/group/EOHarm/message/10208
From: “John Best Jr”
Date: Thu Jun 23, 2005 10:43 am
Subject: Re: It’s Time to Take Our Message Global
...I sent letters to the editor to 6 Chinese newspapers today and wrote to the UN. It looks like Pharma has their hooks into WHO so talking to them would probably be like asking Bill Frist to help.

http://groups.yahoo.com/group/EOHarm/message/11529
From: “John Best Jr”
Date: Tue Jul 12, 2005 11:12 am
Subject: Take it Global
...I’ve been writing letters to politicians for years and conclude that I have just wasted my efforts. It is pointless to protest to people who are owned by the criminals… Call it treason if you will but I think we should mount an effort to inform every country on the planet of what we know about thimerosal. If the drug industry has not already bought off every leader in Asia, Africa, Central America and South America, these people could bring real pressure on Bush to stop poisoning their children. We all saw the effect that RFK had using his name to publish something that any one of us could have written. What effect would it have if Wen Jiabao (Chinese Premier) said it?

http://groups.yahoo.com/group/EOHarm/message/11534
From: “John Best Jr”
Date: Tue Jul 12, 2005 11:48 am
Subject: Take it Global
...One would think that countries who already hate us would be happy to gain information to use against us.

Do RFK Jr., David Kirby, Jon Stewart, Don Imus, Montel Williams, Joe Lieberman, Dan Olmsted, or any of the other politicians and media denizens eagerly jumping onto the autism=poisoning bandwagon, care one whit about the fanaticism, contempt and near-treasonous intent that abounds in this movement?

When they refer curious members of the public to Generation Rescue for information about autism, do they ever consider whether “Rescue Angels” like John Best, Jr. are appropriate sources of counsel for parents of newly-diagnosed children, or better sources of expert advice than professionals who have dedicated their careers to understanding autism and providing care to autistic individuals? (See On Generation Rescue’s “Rescue Angels” for another mother’s expression of concern about this.)

When they promulgate the demonization of public agencies and pharmaceutical companies, asserting that the United States is cravenly exporting “poisoned vaccines” to other countries, do they ever consider that this is exactly the kind of conspiracy theory that is responsible for the return of polio to Nigeria, and subsequently to other countries?

When they nod approvingly at statements like, “measles is not the scourge that the money-grubbing vaccine industry would have us think,” do they ever consider that measles can in fact be lethal, or can result in blindness, deafness, or other permanent neurological damage? (Indeed, the dangers of such a devastating disease as polio are often given short shrift by many parents currently influenced by anti-vaccinationist propaganda.)

When they join in the effort to paint “the medical profession” as a collective of malicious, uncaring mercenaries, dismissive of the concerns of parents of disabled children, do they ever consider that the members of that profession are not heartless monsters but human beings—men and women with families of their own, most of whom were motivated to enter the field of medicine by a sincere desire to reduce human suffering, and many of whom have family members with disabilities?

When they accept as God’s truth parents’ assertions that their children’s autism was cause by vaccines, do they ever consider the possibility that those parents may be mistaken, and that their convictions may have been strongly influenced by those who stand to profit from direct marketing of detoxification products and services, and by those who stand to profit from the perpetuation of conflict about vaccines?

I can only wonder: What are they thinking when they hold hands with folks responsible for statements like the ones quoted above?

Comments


  1. It is surprising that someone of Kennedy’s stature would act so impulsively and argue outside of the data. It only hurts the autism field when people don’t stick to the evidence. Thanks for your blog. — Larry Welkowitz    2005-07-26 11:33    #

  2. Kathleen,

    This John Best Jr. guy is quite the fellow!

    The apples don’t fall too far from the tree. The autism mercury movement is based on no science so they need lots of emotion (even rage) and hyperbole to keep the hypothesis in the public’s mind.

    The people who started this tend to present a calm face to the public, but they keep guys like John Best Jr. fired up. — Autism Diva    2005-07-26 17:30    #

  3. Boy, I knew he was extreme but wow. Scary guy. — Kev    2005-07-27 06:05    #

  4. Interesting timing, because we were just at the annual reunion for my mom’s family, and the NTs were definately in the minority. “Don’t worry,” my DS’s five year old second cousin said. “He needs his quiet alone time.” I don’t need to tell all of you how insanely frustrating this mercury discussion is – my MIL even sent me a chelation article in the mail a couple of months ago…”Oh,” DH said. “That is pretty dangerous, and we know the autism is genetic for us, so we’re just going to stick with speech therapy….” — Bridget    2005-07-27 08:28    #

  5. I don’t know what these spokespeople for the mercury parents are thinking, because they don’t respond to you or to me. I can only conclude that their interest is in the end and not in the means.

    I saw another post by a “Rescue Angel” about how a family was difficult to work with, but she succeeded in making them see the truth. Reading John Best’s posts, one can see how this is done. Take a person who is going through a crisis, tell her she’s a child abuser unless she does what you tell her to do, and that her refusal to capitulate will doom her child to life in an institution, whereas her agreement with you will result in a cure for the thing that used to be her child—and bingo, another convert.

    Hey, whatever it takes. — Anne    2005-07-27 12:08    #

  6. You know Kathleen, it is not very nice to copy posts and paste them somewhere else.

    So many of your secrets can be made public so easily. You need to stop trashing people before someone gets really mad. — Guess who    2005-09-16 00:46    #

  7. “You know Kathleen, it is not very nice to copy posts and paste them somewhere else.

    So many of your secrets can be made public so easily. You need to stop trashing people before someone gets really mad.
    — Guess who Sep 16, 01:46 AM #”

    Someone needs to grow up. His/her lot do it all the time. — David Andrews    2005-10-14 14:12    #

  8. Anne…

    “I saw another post by a “Rescue Angel” about how a family was difficult to work with, but she succeeded in making them see the truth. Reading John Best’s posts, one can see how this is done. Take a person who is going through a crisis, tell her she’s a child abuser unless she does what you tell her to do, and that her refusal to capitulate will doom her child to life in an institution, whereas her agreement with you will result in a cure for the thing that used to be her child—and bingo, another convert.”

    Isn’t that – um – duress? :-/ — David Andrews    2005-10-14 14:13    #

  9. Thanks for the publicity. Nice comments from a bunch of jerks who think curing autism is a bad thing.
    You should’ve introduced yourself to me in Concord, Kathleen. I guess a weasel who prefers sneak attacks wouldn’t have the guts for that. — John Best    2005-10-19 22:25    #

  10. John Best is angry. And rightly so. His child was injected with a huge amount of mercury and now his child has autism. You are all angry because he is telling it like he sees it and that makes you uncomfortable, because for whatever reason, you are choosing not to try chelation, when there is so much anecdotal evidence of it working. Chelation can cure Autism. Chelation has recovered my 3 children from ASD. It was quite cheap and easy. I am in no way connected with any organisation, but I applaud the efforts of generationrescue.org
    (Kathleen, in my family tree, there was nobody who never learned to speak,remained incontinent and spent their lives rocking, squealing, and twiddling switches- so no, I didn’t look at my severely autistic son and think oh, he is just like us) — Fleur Elmslie    2005-10-20 02:06    #

  11. _“there was nobody who never learned to speak,remained incontinent and spent their lives rocking, squealing, and twiddling switches- so no, I didn’t look at my severely autistic son and think oh, he is just like us”_

    Where are those things in the diagnostic criteria for autism Fleur?

    I don’t know how old your child is Fleur but John Best Jr’s is nine. Mine is five. All seemingly have a diagnosis of severe autism (whatever that means). I would hope that all of us are treating our childrens needs rather than what makes us angry.

    Personally I’m angry that someone as obviously unhinged as John Best Jr sees fit to call me a child abuser because I don’t share his beliefs. I’m not angry because I’m worried about him exposing ‘the truth’ when clearly he is not.

    You may well be happy to indulge your belief in the anecdotal Fleur but I’m afraid that it doesn’t make you right. What it does do however is add to the negative stigma and misinformation regarding autism and this fact makes me angry as I attempt to raise my daughter to have a valued place in society.

    What does your anecdotal evidence tell you? That thousands of parents are curing their childs autism using chelation?

    No, I’m afraid not. The symptoms of mercury poisoning and the symptoms of autism are nothing alike. Likewise, a recent study indicated that out of all treatments for autism that parents of autistic kids were trying or had tried, chelation only accounts for 7%. Interestingly, the figure for people that tried chelation in the past and discarded it is higher than that of its current usage indicating that most, if not all, parents who tried it tried it for awhile then moved on to something else when it didn’t work.

    Based on the symptoms you describe I’d say you haven’t really got to grips with what autism actually is. thats something of a shame given that you so obviously hate it so much. — Kev    2005-10-20 08:16    #

  12. Our Rescue Angels are American heroes. I applaud everything they do and say.

    Kathleen, you are the minority of a minority of a minority. I have never met a parent of an autistic child who would “accept� the wide range of physical maladies they display as O.K. and I think you are a coo-coo clock for pushing your agenda.

    JB Handley — JB Handley    2005-10-23 22:27    #

  13. Oh, and Kevin. It seems we at Generation Rescue drive you coo-coo, too. A word for you, mate. Human nature says that we rarely get impacted by things we know to not be true. However, when people are saying things we FEAR might indeed be true, and we haven’t faced that, we go nuts. Perhaps this explains the amount of time you spend trying to DISPROVE what we say.

    I think you and Kathleen should find 300 parents, set up a website, take some full page ads out in the newspaper, and let parents know that this autism thing is no big deal, you could call yourself “Inertia Angels� or “Denial Angels� – I’m sure parents would really appreciate it. You’d get a lot of takers. Also, make sure you encourage them to never do any medical tests and/or explore the possibility that people like me might be on to something. Why would you want their kids to join the thousands who are recovering every day?

    Best,

    JB Handley — JB Handley    2005-10-23 22:33    #

  14. “Our Rescue Angels are American heroes. I applaud everything they do and say.”—JB Handley

    “Brownie, you’re doing a heck of a job.”—George W. Bush — A friend    2005-10-24 07:32    #

  15. Our website has been up since May. We now have many parents who read the site, made a Doctor’s appointment, began treating their child, and have seen results. We receive dozens of emails a day thanking us and our Rescue Angels for giving hope back and putting their children on a path to recovery.

    If you are doing research on autism and treatment options and have stumbled upon this unfortunate site, note that the folks who lurk here want you to “accept� your child’s autism as a personality type that God has blessed them with, thus the term “neurodiverse�. These same folks never show any willingness to engage in a specific dialogue about the medical issues all of our children have nor the many tests we have that confirm what is actually wrong with our children. When told that our kids are getting better, they feign disbelief and ignorance or chalk it up to normal development.

    Tens of thousands of parents and more than 400 doctors know better, and the agenda of these coo-coos, of which there are only a handful, would serve to keep our children from receiving proper treatment.

    These coo-coos tend to hang onto posts that I write like trophies, so I look forward to reading this elsewhere on the web. These are the same coo-coos who actually contact our Rescue Angels in their homes and offices and harrass them – a practice that we find intolerable.

    Since May, more than 5,000 parents have begun treatment on their children after contacting our website and our volunteers – we give thanks everyday for our courageous volunteers.

    JB Handley — JB Handley    2005-10-24 10:00    #

  16. And, while I’m at it, a few more thoughts:
    – I’m not a litigant in any vaccine cases (which Kathleen Seidel wrote on her site I was, spreading untrue bullshit) nor have I ever been nor will I be
    – I have no economic interest in anything to do with autism

    These coo-coos try to infer that people like me and John Best have a hidden agenda. Our agenda is not hidden. Our kids are getting better, we want others to know why. These coo-coos tend to dismiss that mercury could cause harm.

    And, Kev, have you done research on the trailer-dwelling coo-coos you now are affiliated with? You keep harping on the symptom profile of autism. Look, mate, our kids ALL share the same physical symptoms. I had twin autistic boys over to my house this weekend. They are six. They’ve never been treated. They can’t talk, much less function, they require 24 hour care. They have all the same physical issues my son HAD, which have since resolved. In your coo-coo world these parents would do nothing. Shameful and idiotic.

    I post here only for the sake of other parents. You are an extreme and unfortunate minority, which should tell you something.

    JB Handley — JB Handley    2005-10-24 10:43    #

  17. All of my blog entries are available via the catalog page, and pre-blog writings are indexed in the right column under “Older Advocacy Letters,” for anyone who is interested in reading what I have written about autism.

    I have no problem with parents doing what needs to be done to nurture their children, and have never advocated that parents should deprive their children of appropriate medical care. I do have a problem with inaccurate generalizations about autism; premature and misleading claims regarding the effectiveness of supposed “autism cures”; sensationalistic negativity about the lives of people on the autistic spectrum; demonization of medical professionals; promulgation of conspiracy theories and vindictive attitudes; browbeating of people who have expressed their difference of opinion on private, personal medical matters; close-minded fanaticism and dogmatism; intimidation; and verbal abuse.

    In the category of verbal abuse, I include not only many of Mr. Best’s public statements, but also J.B. Handley’s juvenile name-calling (“coo-coos”), false accusations (“These are the same coo-coos who actually contact our Rescue Angels in their homes and offices and harrass them…”), breast-beating legal threats (“We will sue you for libel and we will go after your homes and assets. My lawyers live to investigate and sue people like you. This will be your only warning.”) and classist put-downs (“the trailer-dwelling coo-coos…”).

    I say it’s bullying, and I say to hell with it. — Kathleen Seidel    2005-10-24 11:32    #

  18. Right, JB.

    The people who are not impressed with Buttar’s miracle cure don’t have the money and time you have.
    You are special, aren’t you, you and your money… soooo special.

    Who lives in trailers? And if they did live in a trailer and couldn’t afford your million dollar home, what’s wrong with that?

    I wonder how many people who live in trailers can afford Buttar? huh? I wonder. Maybe none. And you and your money, will you pay for people to take their kids to DAN! docs or to Buttar? I doubt it.

    Your straw man argument, that people who oppose Buttar’s expensive sham chelation and other chelations, like the one that killed Abubakar…remember him?... is so silly and so old.

    We take our kids to get medical care and therapies. Duh. JB. Duh.

    Even people who live in trailers know that.

    Even people who live in trailers do that. They are smarter than those who get sucked into the chelation mess.

    If I had the money you do, JB, I think I’d be setting up programs for the kids that won’t get cured by chelation…no matter how long it’s tried. Because they are going to grow up and need help.

    But you don’t care about them, do you? They disprove your hypothesis that all autism is mercury poisoning and can be promptly cured with Buttar cream. — apparent    2005-10-24 13:38    #

  19. To any of you who dwell in trailers and treat your children medically, I applaud you.

    I care about any and all autistic children, or I wouldn’t waste my time posting on a list who preaches acceptance for chidren with a medical emergency.

    My “threat� of legal recourse was no threat, it was a promise. Certain members of the ND crowd have been actively harrassing our Rescue angels in their homes and offices and crossing legal lines in doing so, this is fact and those in the wrong know who they are. If you haven’t done this, the message was not intended for you.

    You are wasting my time and the time of parents who are treating their children successfully, myself included.

    I only post here because parents using Google may find this post and they need to know how fringe you guys really are. Coo-coo.

    JB Handley — JB Handley    2005-10-24 16:26    #

  20. As ever JB, you provide adequate amusement but no real substance.

    _“Human nature says that we rarely get impacted by things we know to not be true. However, when people are saying things we FEAR might indeed be true, and we haven’t faced that, we go nuts. Perhaps this explains the amount of time you spend trying to DISPROVE what we say.”_

    And also why you made 4 comments to this post in less than 24hours?

    You misunderstand JB – I don’t fear what you say might be true. Its quite obviously not and your continued insistence merely marginalises you and your cult. What I do fear however is that people might listen to what you say and be convinvinced by your certainty. Certainty is an attractve thing after all. Even a baseless one like yours.

    You do not care about autistic children as you choose, in the face of all reason, to believe there is no such thing as autism. Do not patronise and insult the intellegence of those who know otherwise. Instead get backin your fundementalist corner where you can label all of us who actually do care about autistic people as child abusers and terrorists.

    We don’t believe you have a hidden agenda, we believe you’re wrong. On the two occassions I’ve confronted you about your beliefs you turned tail and ran. I’ll challenge you again here and repeat that I’m happy to debate you in any online situation you care to mention. This will be the fourth time I’ve offered to do this. And I predict the fourth time you’ll tuck your tail between your legs and scuttle off.

    Oh and JB? I ain’t your mate. Mate. — Kev    2005-10-24 20:59    #

  21. LOOK AT THE AMISH! They do not vaccinate. Not only are they not ‘dying off’ from deadly diseases, they DO NOT HAVE AUTISM! The few Amish that have autism, had high levels of mercury. It’s the most perfect epidemilogical study that we could hope for.

    As far as name calling, it’s very difficult to put up with people who are getting in the way of a family experiencing the joy of a recovered child. The Handley’s are getting their son back and they want other families to know that they can also. Yes, it is great to have the finances to get the best for a child. But even a poor person can take some steps to help their child excrete toxins. The key is knowing that something can be done and Generation Rescue is publicizing this very important info. They have only one agenda: let parents know that more likely than not, their child can be recovered so that they can have a life of normalcy.

    I watched my granddaughter change both behaviorally and physically the day of her four month vaccines. Though our love for her can never be altered, we can establish a closer relationship with her by changing her behavior through biomedical treatments. Thank God for all the people who paved the way for us to help our granddaughter recover from vaccine poisoning. Trying to control behavior that is being triggered by a neurotoxin is getting the cart before the horse. First things first…get the poison out! You’ll then have a chance at a relationship with your child which is all any loving parent wants.

    Injecting mercury into babies is stupid; leaving it there is even more stupid. Linda Soderberg — Linda Soderberg    2005-10-25 00:17    #

  22. Linda, you say that “As far as name calling, it’s very difficult to put up with people who are getting in the way of a family experiencing the joy of a recovered child.� You seem eager (as Fleur before you was eager) to rationalize and minimize the ugliness of Mr. Best’s and Mr. Handley’s bullying behavior. No one is getting in the way of anyone “experiencing the joy� of having a good relationship with their family members. Your comment, “It is great to have the finances to get the best for a child,� suggests that you have missed the demeaning point of Mr. Handley’s reprehensible “trailer dwelling coo-coos� remark.

    I can’t help but wonder whether you or any of your fellow Rescue Angels have considered saying to your all-too-aggressive comrades, “Well, guys, if you talk to people in a chronically combative, verbally abusive manner, you’re going to alienate them, don’t you think?â€? — Kathleen Seidel    2005-10-25 01:39    #

  23. “LOOK AT THE AMISH! They do not vaccinate. Not only are they not ‘dying off’ from deadly diseases, they DO NOT HAVE AUTISM! The few Amish that have autism, had high levels of mercury. It’s the most perfect epidemilogical study that we could hope for.”

    A perfect example of the state of the scientific thinking in GR echelons.

    The Amish don’t use cars either Linda. Maybe autism is caused by cars. I’m guessing they don’t play XBox games either. Maybe its Microsoft poisoning us all!

    Hang on – the Amish all ride horses! Maybe horses offer some kind of natural autism-protection!!

    The point is Linda amongst my facetious examples is that correlation does not equal causation . If you want to use the Amish to indicate a scientific outcome then you must use study yhem scientifically. Not just rest on the word of one reporter. — Kev    2005-10-25 03:18    #

  24. The point about the Amish is that there is nothing special about their blood. When the Amish are exposed to mercury, they too get ‘mercury poisoning’. The other point is that they are NOT getting all the dreaded deadly diseases that will ‘supposedly’ occur if we stop vaccinating. Because of fear tactics, we now have the ‘Thimerosal Generation’. What a senseless tragedy. The bottom line is that injecting mercury into babies was, is, and always will be STUPID! Those responsible should be held accountable. — Linda Soderberg    2005-10-25 10:58    #

  25. My son is 100% recovered from an autism diagnosis. We have legal documentation (IEPs) stating he is autistic then later stating he is neurotypical. He is completely indistinguishable from his peers (academic, speech/language, social). We used numerous traditional and biomedical interventions including transdermal chelation. Prior to chelation our son was an extremely sick little boy unable to take advantage of therapies. He suffered from chronic, unrelenting diarrhea, allergic reactions to numerous foods (hives, eczema, red hot cheeks/ears, negative behavior) repeated ear/bladder infections and a few other physical maladies. For us, chelation WAS a miracle. In addition to the dramatic reversal of autistic-like behaviors all the physical issues are gone. GONE. (Yes, testing for mercury was intitally off-the-charts and now is non-detectable but I suspect you probably do not deem that reliable) I guess you may call my son an anecdote, or I guess I can’t speak to what you may call us but my son is BETTER. And I feel extremely fortunate that this is the case. I am also one of the rescue angels of which you speak. I get numerous emails from parents every day. I choose my words very carefully and never coerce or force an opinion. Most parents just want some local resources, a little support when they are feeling sad/overwhelmed and some hope. I wish that had been available for us when we started our journey. I have always found a strong sense of community in the autism “world.” It is what got ME through when my child was crying, stimming on car wheels for an hour while diarrhea ran down his leg for the 50th time. My personal belief is that mercury caused my child’s autism. I understand that you do not. We all live our own reality.
    Round and round we go.
    I don’t know why I felt compelled to write. But I did. — Julia Berle    2005-10-25 12:03    #

  26. Keith:

    Thanks for challenging my manhood so directly. As we say in America, “them’s fightin’ words.� Believe it or not, you’re not the first person to challenge me to a debate, although you’re certainly the biggest wanker. I respect your backbone, while disagreeing with most of what you say.

    Kathleen, you’d be well-served to invest in another layer of skin. I notice that a consistent strategy of yours is to latch-on, histrionically, to sound bites from people on my side of the table. As an example, you made a stink about a post I made to you about offering to pay for a hair test for your child, implying that I was trying to violate your privacy or some other such nonsense. Equally, you actually created a petition against Boyd Haley because of his use of the term “Mad Children Disease� which you took wildly out of context. These gimmicks are transparent and actually help publicize our position while reinforcing the perception of the 8-10 people who think like you do as being coo-coo. Of course, when you are coo-coo this can be more difficult to discern.

    Keith, before I agree to debate you, 2 comments:

    1.The coo-coo NDs are consistently unwilling to acknowledge the thousands of parents reporting enormous, consistent gains from the biomedical approach, most notably chelation. I think this is because they are scared shitless that they may have not done right by their kids. To them I say it is never, ver too late. Most of the science that makes our cse self-evident is very recent. Open your mind, get your child back. They never mention the more than 400 doctors, all of whom have taken a material pay cut to help these kids, who are serving more children every day. In 2000, we probably had 50-100 parents chelating their kids, today more than 10,000. In short, your position is being overrun because most parents are not coo-coo, they look at facts, do the tests, and make the best decision for their children.

    2.I believe, Keith, that your particular bug up the butt is that we have made the sweeping generalization that ALL autism is a misdiagnosis for mercury poisoning. Implicit in this, I’m guessing, is that you think your daughter is autistic but not mercury poisoned. Yet, when I’ve asked you to substantiate what medical tests you have done to assure yourself she isn’t poisoned, you’ve pulled a Kathleen and said that is private. This is what’s known as a “closed-loop argument� and is transparent to anyone with a brain.

    So, I accept your offer to a debate, with the following criteria that need to be met:

    -Substantiate who you are and why you are qualified to debate. You know my bio, it’s all over the internet. To me, you’re just a coo-coo Brit with an eponymous blog who posts correspondence with me like some sort of trophy.

    -I will only debate live. Autism One in May in Chicago would be a great venue. We can each bring a camera crew, so long as you sign a waiver that I can show the footage anywhere I want (I will sign the same).

    -You must, in advance, do three medical tests on your daughter and post the results for all to see (as I will do for my son):

    1.Base line toxic metals urine test from DDL
    2.Post-oral chelation agent toxic metals urine test from DDL
    3.Hair test with minerals from DDL

    -We need to agree on the debate topic. To me, it’s simple. You assert that all autism is not mercury poisoning, I say it is. So, let’s focus on our kids. You prove your daughter is not mercury poisoned but labeled autistic, you win.

    One of the most frustrating arguments I hear from the coo-coo brigade is that “chelation therapy is not approved for treating autism.� My point is that my son is mercury poisoned, not autistic, which is just a convenient label invented by a psychologist 50 years ago. We parents are, ironically, using the very treatment mainstream recommends for heavy metal toxicity: chelation! If, despite us shouting from the rooftops that our kids are getting better, you choose to not even have your child tested for what we say is wrong with them, that says a lot. To me, it says you are coo-coo.

    JBH — JB Handley    2005-10-25 12:19    #

  27. Julia, thank you for visiting and sharing your story. I’m glad that your son is healthy now, and hope that he is thriving at school.

    Your statement, “My personal belief is that mercury caused my child’s autism. I understand that you do not,� is a little surprising, since we have never met or corresponded, and I have never offered any opinion about your son’s medical condition to anyone. I have taken issue with the sweeping generalization made by Generation Rescue as an organization, and by many of its members, that all autism is a consequence of mercury poisoning. Calling an entire class of human beings “poisoned� is not justifiable simply because that is what one believes happened to one’s own children.

    I am more than willing to consider the possibility that there are children who have had vaccine reactions, who were not born autistic, and whose autistically-similar symptoms subside with appropriate treatment. There may also be autistic children who have experienced vaccine reactions, and thereby became much more miserable, more impaired and more visibly autistic than they might have been had they not experienced a reaction. However, I don’t for a minute believe that all autism is a consequence of vaccine damage. I have read all too many posts by parents who have no stories to tell about an immediate vaccine reaction, only about getting their child’s autism diagnosis, spiraling into despair, believing every worst-case scenario they encountered, going online or reading “Evidence of Harm,� deciding that mercury must be the culprit, and proceeding to join in the vindictive clamor against medical professionals, public health officials and pharmaceutical companies. By pushing extreme, unscientific, insupportable generalizations, Generation Rescue not only promulgates stigma-perpetuating inaccuracies about autism, it also does a disservice to people who possess solid evidence that their children have suffered adverse reactions from vaccines.

    I’m glad to hear you say, “I choose my words very carefully and never coerce or force an opinion.â€? Perhaps you can persuade some of your more publicly aggressive and dogmatic colleagues to do the same. — Kathleen Seidel    2005-10-26 12:22    #

  28. It is not surprising that J.B. Handley should answer my comments about his verbal abusiveness by recommending that I “invest in another layer of skin.� "You’re too sensitive" is a classic abuser’s comeback.

    Mr. Handley’s penchant for name-calling, insulting, ridiculing, belittling, making light of people’s values, casting aspersions upon others' character and mental soundness, ordering, and attempting to control, dominate, threaten and intimidate, are all elements of the well-recognized behavioral profile of adult bullies.

    My previous exchange with Mr. Handley can be found here. In his letters to me, he suggested that my children are somehow “toxicâ€? and in need of diagnostic testing, and that it would be appropriate to post the results of such testing on his website for all the world to see. He has now made the same request of Kevin Leitch. However, no one on this earth has any moral obligation to comply with such invasive requests, simply because an aggressive person insists that they do so. Not everyone chooses to display their family members’ medical records publicly, or to expose their children to public scrutiny, or put them into play as pawns in debate. Handley grants credibility only to those who make the same medical decisions he does, and insults the intelligence and questions the integrity of those who don’t, asserting that parents who make their own decisions but who do not feel the need to justify those decisions in response to a confrontation by a zealot, are somehow “in denial.â€? Although Mr. Handley’s offer to me was couched in superficially conciliatory language, his suggestion that any refusal on my part to accept that offer “would be tellingâ€?—that is, that it would reflect negatively on my sincerity and motives for speaking my mind publicly—made it quite obvious that his offer was little more than a dare. He employs the same approach in his challenge to Kevin Leitch. Such games of hardball and intimidation may serve Mr. Handley well in the business arena and on the rugby field, but they leave me absolutely cold. — Kathleen Seidel    2005-10-26 12:26    #

  29. “The Handley’s are getting their son back and they want other families to know that they can also.�

    I think the best “debate� would be for the Handleys to show up at the next Autism One with an absolutely 100% normal child, Jamie, the one who is now still very obviously autistic (and wonderful) from the description of him.

    If you can bring your child to Autism One and he has no perseverations, totally wants to hang with his buddies and follow all the latest fads. If he can make eye contact absolutely normally and his speech is 100% normal-hey, you’d have something there. But that ain’t happening – is it JB? Did you show off your son at the APA conference? If not why not? Time to admit the truth, even if it hurts.

    All your anecdotes mean nothing if you can’t prove that the kids even have mercury in their brains or that their brains look like mercury damaged brains, on an MRI or functional MRI or any other brain scanner.

    All your anecdotes mean nothing if the kids weren’t autistic to begin with but just had a developmental delay that they were going to grow out of anyway.

    All your anecdotes mean nothing if “losing the diagnosis� means that the kid got older and developed, but is still autistic by real measures.

    All your anecdotes mean nothing if the “scientists� leading you are a bunch of flakes, wingnuts and liars. And they are.

    I hear that you don’t care what Buttar’s credentials are. That’s handy. Fit’s right in with cult-thinking.

    Why don’t you pay for some research to prove that TD DMPS actually works? Pay for some real research with a neutral scientist and double-blind cross-over and real labs at real universities or hospitals. Doctor’s Data is a shady outfit. They look exactly like crooks, their lab reports are misleading.

    And who is “Keith�?

    Goodness, if someone is actually harassing your Rescue “angels� in their homes, I hope the police get them. As it is, I know of some of the ND who have had death threats for opposing your mercury insanity. Was that you, JB, one of your rescue angels? I hope not.

    JB, just fund some real science. You and your wife have money to burn, obviously. As it is you keep following a cult of belief with no empirical science to back it up. Time to back up the bluster bucko. But you won’t do it. You won’t do it, ever. You are afraid of the truth. You have more money that Kathleen, Kevin and 20 other parents combined. Use it to back up your silly idea with some real science, or just shut down your travelling medicine show before someone gets hurt.

    Telling Kathleen to get a new layer of skin is garbage. You need to learn that not all autism is mercury poisoning and you need to learn how offensive your ridiculous position is to people who have autistic kids who aren’t mercury poisoned. You, JB, are toxic, threatening, uppity, scientifically ignorant, elitist and you are needlessly and dangerously caustic, there isn’t enough skin in all humanity to protect a person from that. With angels like you, who needs devils? — science works    2005-10-26 12:38    #

  30. “We have legal documentation (IEPs) stating he is autistic then later stating he is neurotypical. �

    NT kids don’t have IEPs. What’s that about?

    School districts are notorious for wanting to bump truly handicapped kids out of special ed into normal classrooms, to get them out of the IEP system.

    Just because a school says your kid is normal, that sure doesn’t mean he’s normal. And it means nothing legally. — apparent    2005-10-26 12:43    #

  31. NT kids don’t have IEPs. What’s that about?

    **It was his Triennial, a mandatory requirement.

    Just because a school says your kid is normal, that sure doesn’t mean he’s normal. And it means nothing legally.

    **You are more than entitled to your opinion. I for one have tons of testing from a variety of sources and different medical arenas (not just the district) to say that he is. Not to mention that I live with him and his other 2 NT siblings everyday.
    And, an IEP is a legal document.

    **Kathleen, thank you for your respectful comments. He IS thriving at school. Thank you. With regards to the rest of it all, I will bow out and let you guys keep up the discussion. I, for one, DO have a thin skin! I wish for all of you happiness, however you define it, for your children. — Julia Berle    2005-10-26 14:24    #

  32. Linda Soderberg: “LOOK AT THE AMISH!” Yes, look at them. They demonstrate that when you have a closed genetic pool that happens not to include genes for autism, you don’t end up with autistic people.

    JB: Given that the effects of lead poisoning on the brain are not reversed by chelation, why do you think the effects of mercury poisoning on the brain can be reversed by chelation? You can make the metal come out, but the damage is still there.

    (I’m humoring you here, by the way, asking a question that presupposes that autistic children are mercury-poisoned. See how nice I can be?)

    Are you just about to say, “Look at how well the chelated kids are doing?” I agree with this method; let’s look at how children with a certain medical intervention compare to those without that intervention. But instead of chelation, let’s make that intervention the administration of thimerosal-containing vaccines. See where I’m going with this? You were almost about to say you believed in epidemiology for a minute there, until the topic became thimerosal.

    Oh, and asking Kev to subject his child to a chelation challenge? Tacky.

    The entire autism-mercury movement is described so well by this passage from an article in, of all places, Esquire magazine:

    “If we have abdicated our birthright to scientific progress, we have done so by moving the debate into the realm of political and cultural argument, where we all feel more confident, because it is there that the Gut rules. Held to this standard, any scientific theory is rendered mere opinion. Scientific fact is no more immutable than a polling sample. This is how there’s a ‘debate’ over the very existence of global warming…. The rest of the world looks on in cockeyed wonder. The America of Franklin and Edison, of Fulton and Ford, of the Manhattan project and the Apollo program, the America of which Einstein wanted to be a part, seems to be enveloping itself in a curious fog behind which it’s tying itself in knots over evolution, for pity’s sake, and over the relative humanity of blastocysts versus the victims of Parkinson’s disease.”

    And over whether vaccines cause autism. — Lisa Randall    2005-10-27 00:27    #

  33. I agree 100% with something someone posted up above:

    It is up to us to fund science to prove our position. Without it, too many children will go untreated.

    And, we are.

    To all you NDs who are hassling our Rescue Angels: please stop. We would prefer to spend our times helping families who share our beliefs about the cause of their children’s condition. If you think we’re wrong, leave us alone, and we will do the same. If you want to fight, a fight you will get.

    JB Handley — JB Handley    2005-10-27 01:20    #

  34. Kathleen, have you not heard of “netiquette”? Do you know it is impolite to copy and paste people’s posts out of context and add your own comments to it?

    Do you see all the trouble it has caused?
    Your “Evidence of Venom” letter kicked off this whole war.

    If you or others are offended by some of the things people say you should confront them directly and explain it to them. Your open letter to David Kirby was hostile and attacking. That is no way to establish a dialogue with someone.

    Instead of confronting the problem head-on you chose to create animosity.

    Do you honestly think that the people on EOH knew you were lurking and silently steaming over their statements? Why didn’t you post something to the EOH list? You are obviously very articulate. I’m sure you could’ve worded it in a way that expressed your frustration without creating ill-will.

    I was recently called a “cyber stalker” by Camille Clark on Kevin Leitch’s blog (for what reason, I cannot fathom.)
    Kathleen, I am sorry to say this, but your behavior very much resembles stalking. You have tracked down and compiled posts by Mr Best, EOH list members, many GR Rescue Angels and more. You have sent letters to the media about the EOHarm listserve – including one to the Des Moines Register.

    I was called an “attack dog” by Kevin Leitch on his blog. Do you know why I am “attacking”? I feel the need to defend myself. Why? Because I and many people that I consider my friends have been attacked by you. We were sucker-punched, taken completely off-guard. We had no idea we had offended anyone. If we had been approached in a rational way I am certain you would have gotten an apology. I and many others had no idea there was an “anti-cure movement” or “autistic liberation movement”. We had no idea that autistic people found our statements offensive. Heck, we didn’t even know adult autistic people had the skills to use computers. Instead of using this opportunity to educate and advocate you chose to humiliate the “offenders” and thus declared war.

    If this had been handled differently we could have been united instead of bitterly divided. — Ashleigh Anderson    2005-11-03 02:17    #

  35. Ashleigh Anderson’s suggestion that I “kicked off this whole war� with my letter to David Kirby is absurd. I was reporting on hostile statements made by an organized collective of political activists, not initiating a personal “attack.� If one re-reads the letter carefully, one will see that it was a sincere inquiry about a serious problem—a plea to David Kirby to take a conscientious look at the human damage being inflicted by a storm that he has helped to create and that has been floating his boat very nicely. Its title was obviously a play on the title of his book, and it accurately reflects the contents of the letter. The people I have quoted and those who sympathize with them have been understandably defensive and embarrassed that their toxic attitudes towards disability and disabled individuals, their vilifications of parents, researchers, medical professionals, public officials, autism organizations, and autistic citizens who do not hold to their theories or support their political agenda, and their contradictory statements regarding vaccinations, ever saw the light of day. It is well nigh impossible to function as a whistleblower without ticking people off. However, in all of my writings, I have bent over backwards to express myself in a civilized way—emphatic and passionate, but civilized.

    The EOH list is an open-enrollment group that serves not as a social club or quasi-therapeutic support group, but as the nerve center for an ongoing political action campaign. Although one must sign on to the list to read the posts, it can hardly be characterized as private. At the time I joined, approval was automatic, and list owner Lenny Schafer solicits new members in every edition of his 20,000-circulation newsletter.

    It is also absurd to suggest that any “unity� or constructive “dialogue� about the autism=poisoning crusade could be achieved in the context of a discussion controlled by Mr. Schafer. He has openly disparaged practically anyone on the autistic spectrum who is capable of communicating, and anyone who takes issue with his attempts to mobilize a biomedically-oriented, revenge-oriented, parent-dominated monopoly on public discourse about autism.

    I make no secret of the fact that I have written many essays and letters to editors of newspapers around the country expressing my opinions on the controversy over autism and vaccines; many of them are posted on this website. My letter to the Des Moines Register included two references to the publicly-viewable Autism-Mercury list, and one to an EOH post in which a list member stated that, “for “public consumption� I am just anti-mercury. No one can argue with that. Privately… I don’t foresee ever getting another vaccine for myself or my family.� No doubt many autism=poisoning crusaders would be ecstatic if someone exposed similar duplicity on the part of pharmaceutical companies or the government.

    Ashleigh Anderson states that my behavior resembles stalking and J.B. Handley accuses “ND’s� (i.e., his niggerizing abbreviation of the word neurodiverse) of “hassling our Rescue Angels� and contacting them “at their homes and offices.� I am the sole proprietor of Neurodiversity.com. I may be accused of violating “netiquette,� but not of violating the law. I have never made either explicit or implied threats of harm or legal action against anyone involved with the autism=poisoning crusade. I have never attempted to contact any member of Generation Rescue at their home or office, and have never encouraged anyone else to do so. I have never made intrusive or frightening communications. I have never damaged or threatened to damage anyone’s property. I have never interfered in any way with anyone’s pursuit of healing for themselves or their family members. Documenting one’s concerns about the speech and actions of participants in a political action campaign is hardly the same thing as “stalking.� Mr. Best’s condemnations of parents who do not choose to chelate their children are available not only on the EOH list, but also on public forums such as the Parents.com board, and more recently, AWARES. Mr. Handley’s outbursts are now well-documented on this page, as well as on other blogs.

    I am now closing comments on this blog entry. — Kathleen Seidel    2005-11-03 13:26    #