I’ve said a few times on here and a few times on other blogs that it is dangerous and irresponsible to maintain an absolutist position on just about anything to do with autism. I can’t remember who said it but whenever I see someone claiming to know for sure what causes autism or what the best course of treatment for autism is I recall a quote that goes something like this:
Follow the man seeking answers, flee from the man who says he knows them all.
However, on occasions I have been known to break this self-imposed belief. This is such an occasion.
Skeptico is a blogger that has commented a few times on various aspects of the thiomersal/mmr/autism ‘connection – notably a thorough debunking of the RFK Salon.com piece earlier this year.
Skeptico mailed me today to draw my attention to a comment made on his site to the effect that the wearing of a tinfoil hat designed to prevent alien abduction can successfully treat autism.
As of Dec. 2005 a hat with velostat worn by autistic children has improved their performance markedly. Michael Menkin is seeking more autistic children in the Seattle, Washington area to try the hat. Some of the autistic children who improved after wearing the hat with velostat for over three months are not related to UFOs or any alien phenomenon.
The researhc of Michael Menkin into alien abductions, with interview of several people with encounter experiences, was featured on KINGTV Evening News Program on November 16, 2005.
This is the sort of shit that one has to wade through to find decent research about autism. Is it on a par with the whole thiomersal/mercury thing? Well yes and no.
No because I can at least see a theoretical connection even if I don’t believe that theory and yes because its another example of a theory driven by anecdotal, unverified, untested belief.
Up until Skeptico mailed me this story, my favourite other crackpot theory was the idea that plastic cups cause autism. Again, this is the sort of mindless crap that detracts from valid science, strips autistic people of the dignity they deserve and only extends ignorance.
Notable in the plastic cup story is the role of one Dr. Stephanie Cave, one of the darlings of the thiomersal/autism connection and listed on page one of the Generation Rescue Hall of Fame. She lent support to a theory that claimed:
…that a toddler became seriously ill and, eventually, “began to exhibit autistic behavior,†after drinking from a plastic spill-proof cup made by Playtex. [Dallas-lawyer Brian R. Arnold ] claims the spill-proof cup was designed in a defective manner that allowed bacteria and mold to build in the cup. Alleging the bacteria caused the child’s condition, Arnold accused Playtex of negligence in distributing a defective cup and demanded $11 million in damages.
Cave claimed that the bacteria and mold caused Dysbiosis, a medical term used pretty much exclusively by the alternative health movement.
She was abetted by William Shaw who owns a laboratory famed amongst thiomersal = autism believers as providing accurate tests for elevated mercury. Shaw said that:
…the child had elevated levels of yeast by-products, indicating a “yeast/fungal overgrowth of the gastrointestinal tract.†Dr. Shaw says such yeast infections cause autism.
Unfortunately for Shaw, it seems that the bacteria found on the plastic cup was not the same sort found on the child in question. Good to know that these labs that so many people claim are accurate obviously double check their work.
Autism is a fertile breeding ground for such hocus-pocus and rubbish because it defies current understanding. That we let this sort of thing grow unchecked is dangerous for the health of children (one wonders if this child went on to be chelated based on such a pack of ineptitude and assumption), dangerous for those of us who wish to find a bit of respect for the state of being autistic and ultimately dangerous to us as a society that we are so willing to let such people treat our children.
This is why we need proper, peer reviewed science performed by those who are proponents of theories and treatments that currently have no efficacy or safety studies. If we continue down this road then treatments like the wearing of a tin foil hat used to prevent autism and alien abduction and causes like a plastic cup will become the norm and our children will truly become lost – not in autism but in the real hell of a frenzied knee-jerk search to treat the increasingly bizarre and to forget about what our _children_ who happen to be autistic need more than anything else. I hope you already know the answer to that. If you don’t then I suggest you step away from the quasi-science.
Left Brain Right Brain 
Clone wrote:
“Yes. We wouldn’t want people practicing outside of their chosen professions now, would we? Next thing you know we’ll have sex therapists treating children in hotel rooms. Pathologists injecting vitamin cocktails. Allergists performing euthanasia…”
-At least these people understand that it is dangerous to inject poor infants with neurotoxins. Duh? I’ll take a sex therapist over a mercury-loving quack anyday.
-Sue M.
Dave wrote:
“I mentioned you along with Erik because you both seem to have so much difficulty having a discussion without resorting to ridicule, and to me that is indicative of a mindset that sees any dissenting view as a threat”.
-Right back at you, Dave. Are you blind to the ridicule that those like Eric and I put up with here on a daily basis. What is your opinion of that? By your own definition, it looks as if MANY (not all) on this list are very threatened by what we have to say. Before you tell me to just leave then, I can only say that I have very strong skin so it doesn’t really bother me.
-Sue M.
To the computer-literate people on this list. What did I do to get that funny line through my post above?
Sue M.
Sue M. said: “Are you blind to the ridicule that those like Eric and I put up with here on a daily basis. What is your opinion of that? By your own definition, it looks as if MANY (not all) on this list are very threatened by what we have to say. Before you tell me to just leave then, I can only say that I have very strong skin so it doesn’t really bother me.”
I’m not going to justify ridicule on anyone’s part, nor am I going to make any false claims of impartiality. However, in my opinion you and Erik have both done plenty to attract negative responses. That could have easily been avoided if you didn’t stoop to doing things like like calling people “clinically insane”, or if Erik didn’t make his silly references to “the NDs” for no other reason than to provoke people. Neither of you seem to realize that many of the people reading this blog are on the spectrum themselves, and see comments like that as part of a pattern of intolerant harrasment that they have been dealing with their entire lives. And those of us who are parents are very concerned with trying to protect our children from these attitudes.
It’s not my place to ask you to leave, and I wouldn’t do so even if this were my own blog, unless you became inexcusably abusive. I simply wonder why you bother.
Sue, you pitched it high and right over the plate and Jeter swung so hard and low that he knocked himself over.
or see
http://www.htmlcodetutorial.com/_STRIKE.html
Sue,
I want to say that I do not feel threatened by what you say. It does scare me however. I think that the science is not strong in some of the things you state and that the harm to children could be tremendous.
You might be surprised to find that I agree with you about removing thimerosal from vaccines. I don’t think the data sugest that it caused even a single case of autism, however there is a loss of faith by many in it. Maybe that justifies its removal, which has already made a lot of progress.
Also I will make a prediction that the removal of thimerosal will not affect the prevalence rate. This is a prediction not belief, that means I can be proven to be wrong. That will have to be assessed uing well desaigned epidemiology, not the DDS and not the IDEA which we have over and over and over tell nothing about actual incidence.
I think you should note that Fombonne is one member of a research group. His group may have will contain experts in subjects he is not expert in. This is just as true in my research group.
You might also be surprised to find that I agree that pediatricians should notify parents about possible effects of vaccines. I also think that they be better informed about autism and various interventions in general. I have this suspicion that what we would want on the curriculum of those lessons, would be very different however.
I would want that class to be based on journal reading (both for and against) I should mention that this class would only be taken after research and statistical methods courses.
Is this the same as your wish?
David Ayoub MD – Thimerosal Definite Cause Of Autism.
To what degree of scientific certainty can we prove that current epidemic of autism was caused by the mercury-based preservative, thimerosal, in childhood vaccines?
In response to this question, David Ayoub, MD, told Independent Media TV, “I can state that the certainty of the science supporting mercury as a major cause of autism is probably more overpowering than the science behind any other disease process that I studied dating back to medical school.”
“I think a disease that effects more individuals than AIDS or cancer, in previously normal infants and children,” he states, “has created a sense of urgency amongst researchers.”
According to Ayoub, “A growing number of experimental, epidemiological and biochemical research, has unequivocally shown that mercury is directly linked to the development of autism spectrum disorders and is significantly toxic to the gastrointestinal, immunological, metabolic and neurobiological systems in children.”
“The science of causality is known and understood down to the manner in which mercury impairs the neural pathways of attention,” he adds, “I really don’t see the need for more research to prove causality.” He believes the focus should be “directed towards methods to remove mercury from the body and repairing those biochemical systems that are injured by mercury.”
He’s plain wrong. Sorry. There’s no science or research that has proven, or even offered evidence for, causality. Is this man really a Doctor?
Aha – its an article written by my favourite ranter and ignorer of facts Ms Evelyn Pringle. You’ll note that these studies which demonstrate
_”the science supporting mercury as a major cause of autism is probably more overpowering than the science behind any other disease process that I studied dating back to medical school”_ aren’t actually discussed or even _mentioned_ in Evelyn’s latest rehashed rant.
You mean this guy?
David Ayoub
The Prairie Collaborative for Immunization Safety
Check this out and don’t howl too loud (scroll to the letter at the bottom):
http://www.vaclib.org/links/animal.htm
(get it, howl, vets)
So vaccines don’t cause autism, they cause cancer! It’s so clear now.
So the Griers blame schizophrenia, ALS, ASD, and other neuro conditions on thimerosal and now we have cancer too.
When can we hear from Dr. Al-Bayati, the AIDS denilaist buddy of these guys?
Dr. Ayoub said,
It is sad when the veterinarians and dog owners are warned about vaccine dangers yet we struggle to get AMA officials look at the mountains of evidence that vaccines are injuring our children.
Thimerosal was removed from vaccines for cats and dogs in 1992, but thimerosal-free hepatitis B vaccine was not available for babies until 2000.
It is also alleged that the CDC and the FDA colluded with pharmaceutical companies at a conference in Norcross, Ga., in June 2000 to prevent release of a study showing a statistical correlation between thimerosal exposure and autism, attention deficit disorder, and speech and language delays.
Instead of releasing the data presented at the conference, the author of the study, Dr. Thomas Verstraeten, later published a different version of the study in the November 2003 issue of Pediatrics, which did not show a statistical correlation. No explanation has been provided for this discrepancy.
777-300,
Which epi studies is he mentioning?
Hi again 777-300,
A number of thoughts. Is there any evidence that vaccine makers plotted with the CDC/FDA to obscure data?
Would it be shown in the transcripts?
If so, is a cover up revealed?
I have read the entire thing. It is pretty dull and discussion about the results sound like a lot of other discussions of what research means that I have seen in other research groups.
I want to bring to your attention, the gap of several years between that conferance and the likely submission for publication of that research. If I gained extra data between those times, I would put it in too.
Dave wrote:
“That could have easily been avoided if you didn’t stoop to doing things like like calling people “clinically insaneâ€, etc..
-Dave, I will apologize for using this phrase. I am sorry that people were offended by this comment. I typically don’t use such language. If I might show you where I was coming from when I used it, it may help. We will start at the beginning of this blog entry.
1) The start of the blog entry has Kev talking about tinfoil hats and plastic cups. He then goes on to somehow relate that to the autism/thimerosal connection.
2) Next, we have Nana make the comment:
“You must rub the cream to cure, drink raw milk, gluten free diet, IV therapy, mega supplements, chelate, chelate, chelate. What must these little ones think of parents gone whacko”.
3) Then, we have David:
“There’s some weird parents get lost in a cycle of looking for someone/thing to blame, invest heavily in the treatment against that thing or the lawsuit against that someone, and con themselves into thinking that the process is working (as was said elsewhere, cognitive dissonance is a wonderful thing; it’s the advertiser’s best friend… and the quack’s)… and then they go around trying to convert others to their fucked-up way of looking at the world. And treating these others like shit when they don’t convert. We have seen this”.
4) and David again:
“(let’s face it… after the case of the wee lad who died… we know that position there: better dead than autistic!)”.
5) Then MW chimes in with:
“As for causes of autism; there is of course the ‘Thomas the Tank Engine’ theory”.
6) Then MW again with:
“My new one is the ‘not enough lead’ theory. You take the lead out of paint in the 60s, take out all those lead pipes, stop sweetening wine with lead – and rise in reported autism! If it wasn’t for those darned ‘mainstream’ medics I could start up my own quack business, with lots of lovely reproduction Victorian lead teething rattles for children. Pcha”.
7)Then Bartholomew wrote:
“I’ve taken the comments out of his/her program:
2 N=0
10 Got no science
20 So throw up a screen
30 Step aside
40 Backtrack a bit
50 Get huffy
60 Shoot off nastygram
70 N=N+1
80 If hours on free AOL CD”
8) Then HN:
“But most importantly, I’ve annoyed the 777-300 ( http://www.boeing.com/commercial/777family/300back/index.html ) by asking questions that it dare not answer, because it might show a crack in its view of “realityâ€. It has yet to answer any of my questions satisfactorally… and I’m sure Jonathan may find deficits in the answers from the poster known as an aircraft—- but in reality resembles this:
http://en.wikipedia.org/wiki/Fremont_Troll“.
9) Mome rath wrote:
“So there oughta be plenty to “site.†Maybe Mark Blaxill could come and ‘splain the autism epidemic to us. Maybe Lyn Redwood could come tell us about secretin. Maybe Ray Gallup can tell us about aliens or the MMR conspiracy. They could even sign in with pen names. Like “Sallie†instead of “Sallyâ€, like. Maybe someone could pay Mr. Kirby by the word to defend the mercury conspiracy tale on Kevin’s board”.
So, Dave, I am sorry that I used the term “clinically insane”. It was wrong for me to “label” people. However, when you look at the background behind it… I find it quite comical that all the above comments went through without a peep and then you want to scold me for my comment. Somewhat laughable.
-Sue M.
From the meeting at Simpsonwood,
Dr. Weil: Page 208: “The rise in the frequency of neurobehavioral disorders whether it is ascertainment or real, is not too bad. It is much too graphic. We don’t see that kind of genetic change in 30 years.†(Sounds like the Geiers)
Dr. Brent: Page 229: “The medical legal findings in this study, causal or not, are horrendous and therefore, it is important that the suggested epidemiological, pharmacokinetic, and animal studies be performed. If an allegation was made that a child’s neurobehavioral findings were caused by Thimerosal containing vaccines, you could readily find a junk scientist who would support the claim with “a reasonable degree of certaintyâ€. But you will not find a scientist with any integrity who would say the reverse with the data that is available. And that is true. So we are in a bad position from the standpoint of defending any lawsuits if they were initiated and I am concerned.â€
Dr. Clements: Page 247: “I am really concerned that we have taken off like a boat going down one arm of the mangrove swamp at high speed, when in fact there was not enough discussion really early on about which way the boat should go at all. And I really want to risk offending everyone in the room by saying that perhaps this study should not have been done at all, because the outcome of it could have, to some extent, been predicted, and we have all reached this point now where we are left hanging, even though I hear the majority of consultants say to the Board that they are not convinced there is a causality direct link between Thimerosal and various neurological outcomes. I know how we handle it from here is extremely problematic …
SueM: “Get over yourself, M. I guess it was not very PC of me to use clincally insane… insert ignorant instead. I apologize to all the true clinically insane people on this list whom I have offended.”
Nasty little piece of shit, aren’t you?
Related to that idiot Best?
You show a lot of traits in common with him….
SueM: “-It should have been….”
Why?
And can you prove why?
No?
Thought not.
Bye bye.
I’m going to bed.
David N. Cert SpEd Andrews PgSp BA-status,(pending) PgSpBAEdCertSpEd BA-status David N. SpEd said,
Nasty little piece of shit, aren’t you?
Related to that idiot Best?
You show a lot of traits in common with him….
???????
You call Sue M. a piece of shit and Best a idiot and then you say Sue has a lot of his traits? Sue does?
Jonathan,
There was definitely a cover up after the 2000 Simpsonwood CDC conference.
After the conference, the CDC continued to withhold Dr. Verstraeten’s findings, although they had been slated for immediate publication. The CDC also told other scientists that Verstraeten’s original data had been ‘lost’ and could not be replicated. To thwart the Freedom of Information Act, the CDC handed its database of vaccine records over to a private company, declaring it off-limits to researchers. By the time Verstraeten finally published the amended study results in 2003, he had gone to work for GlaxoSmithKline while in the midst of reworking his research results to fix the data around the CDC’s objective of obscuring the link between thimerosal and autism.
Would you consider Wikipedia to be a bias mercury parent website?
“Wikis are no better than the people who make them. Deal with it. No warrantee is given nor implied. This is inherent in the open source paradigm. What’s true for software should be true for words, too.”
The next SCO suit
Hollywood dude you’re like so totally jaded dude! Your post are like so totally tripindicular dude man!
Like barf me with a spoon!
thanks, dude!
“Would you consider Wikipedia to be a bias mercury parent website?”
YES, Trip-sev. I would.
You know why? Because I’ve seen biased mercury parents edit certain wikipedia pages to support lies.
And Wikipedia’s official policy of “NPOV” really means that any disagreement can only be resolved having both sides in the disagreement come to an agreement.
Anyone can edit Wikipedia. It’s great for things that aren’t contested – and USELESS for things people would lie about, because there is nothing that will reliably remove the lies.
You may be right about Wikipedia Sotek.
Although you were definitely out in left field when you made the first comment on this thread.
Sotek said,
Is Kevin aware that TD-DMPS is *also* not FDA approved?
I mean, if that’s his main objection to everything else …
I guess you missed it when Kevin C. said this earlier in that thread,
When I came home from AutismOne the first thing I did was contact my son’s DAN doctor in Boston and told them I want TD-DMPS! That DAN doctor told me he couldn’t prescribe it because it’s not FDA approved.
_”1) The start of the blog entry has Kev talking about tinfoil hats and plastic cups. He then goes on to somehow relate that to the autism/thimerosal connection.”_
You obviously didn’t read the whole thing Sue. I didn’t ‘somehow’ relate it to the thiomersal/autism belief – I showed how it was definitely related via people like Stephanie Cave and William Shaw.
If you’d like to debate the original entry then go right ahead cos at the moment all you’re doing is your usual tactic of bait and switch every time someone shows you up.
777-300: You’re going to have to do better than some A-CHAMP promoted conspiracy theory about Simpsonwood. Simply quote mining bits that sound shocking won’t do it. Read the whole paper.
Kev wrote:
” Read the whole paper”.
-I have read the whole paper (as has 777-300, I’m sure). It is a gross example of incompetence on the part of the doctors and pharm reps there. They were/are scared to death of the reality. Instead, of dealing with it then they decided to embark in a cover-up which ultimately injured many more children. Sad.
David wrote:
“Nasty little piece of shit, aren’t you”?
-Thank you for those kind words. At least you have helped to prove my point.
-Sue M.
Trip7: “… then you say Sue has a lot of his traits? Sue does?”
Trip can’t read.
I had said: “You show a lot of traits in common with him….”
Traits (such as they exist) do not belong to anyone… people have them in common.
Sue can’t make an honest apology, which would mean that she’d have to accept responsibility for having offended someone… her apology to Dave Seidel (on the “clinically insane” issue) was, if I recall correctly, not a true apology, since she had to leave a parting shot in it.
Best used to do that sort of thing, and a few other things she does (such as JBJr’s behavioural predeliction for insulting people who disagreed with him, or for failing to cite any real scientific references, and so on; essentially hostility in the face of evidence, trying to make the evidence fit his belief system rather than the other way around… and, given that the adaptive way to deal with conflicting evidence is to construe its replications in order to see what it leads to and amending one’s world view with it, the idea of bashing the evidence into submission strikes me as being little more than a pathological attempt to prove one is right – even when the evidence shows otherwise – since being wrong is such a threat to a seriously weak ego).
Sad, really.
777-300 has inadvertently revealed his true identity on Orac’s blog. Welcome to the conversation, Mr. Champagne.
Prometheus.
Hi 777-300,
Whether I consider a wikipedia article to be accurate depends on the what is being said in relation to how much evidence backs it up. It is possible to find both garbage and gems on wikipedia. This is precisely because anyone can make edits and the referee process (while existant) is still limited.
I am looking at your quotes and I promise to get back to you on them. I am out of time for the moment though.
_”777-300 has inadvertently revealed his true identity on Orac’s blog. Welcome to the conversation, Mr. Champagne.”_
I knew who he was awhile ago, as did Ms Clarke – but he was being good so I was happy to let it slide. Lets see how he responds now :o)
_”I have read the whole paper”_
You obviously read it as well as you read this blog entry Sue. I mean, lets look at this one:
_”The medical legal findings in this study, causal or not, are horrendous and therefore, it is important that the suggested epidemiological, pharmacokinetic, and animal studies be performed. If an allegation was made that a child’s neurobehavioral findings were caused by Thimerosal containing vaccines, you could readily find a junk scientist who would support the claim with “a reasonable degree of certaintyâ€. But you will not find a scientist with any integrity who would say the reverse with the data that is available. And that is true. So we are in a bad position from the standpoint of defending any lawsuits if they were initiated and I am concerned.”_
How you get ‘cover up’ and ‘conspiracy’ from a quote like that is beyond me. The guy is quite obviously saying (quite rightly as it turned out) that there are legal and altie wingnuts who stand ready and salivating over anything that they can misrepresent as having scientific meaning when there is none – for God’s sake, Geier somehow got away with being an expert witness in a specialism he isn’t a part of and doesn’t understand – Seems to me that the Doc here is not only right but psychic!
Kev wrote:
“How you get ‘cover up’ and ‘conspiracy’ from a quote like that is beyond me”.
-Hello. Earth to Kev. Where did I say that I got cover-up and conspiracy from THAT quote? Oh yeah, I didn’t. I did like this line from the above quote:
“But you will not find a scientist with any integrity who would say the reverse with the data that is available. And that is true”.
-Who are “your” scientists again? You know the ones with no integrity?
-Sue M.
_”Hello. Earth to Kev. Where did I say that I got coverup and conspiracy from THAT quote? Oh yeah, I didn’t”_
Oh, I _see_ – so you read the whole thing except for that part? That makes perfect sense Sue.
_”But you will not find a scientist with any integrity who would say the reverse with the data that is available. And that is true”_
Hello, Earth to Sue – he’s quite clearly saying that no scientist with an ounce of integrity is going to be able to say that there’s definitely _no_ causative link also. How could anyone possibly say that? The only way we’ll _definitely_ know for sure is when David Kirby’s prediction either comes true or doesn’t and the amount of autism either does or doesn’t stay the same or increase. Whats your take on that Sue? As a fan of Kirbys and one who continually exhorts me to read the thing from cover to cover. Do you agree with him that the amount of cases needs to fall by the end of this year for the thiomersal case to continue to have some form of merit? I hope you don’t go quiet like Erik did when I asked him.
Note to self:
Self, when you are updating your blog, make sure you sign out and sign back in again under your other name before going over to diva’s blog.
That was a dumb move, you got me!
What name can I use here now?
Note to self: “The likes of SueM and JBJr and Trip7 are not worth the bandwidth…. Mr Rankin, I am open to discuss with you anything since you are more open than most who have posted here…. Just because I don’t answer immediately doesn’t mean I have nothing to say to you… it just means I am sporadic in my access here… but I’d far rather discuss stuff with you than the likes of SueM, etc…. At the very least, you read and consider things put before you, and I respect that! Ever so…
SueM: “David wrote:
“Nasty little piece of shit, aren’t you�
-Thank you for those kind words. At least you have helped to prove my point.”
I was commenting on your total lack of empathy…. do I need say more?
Thought not….
I’ll bet that if we all started wearing those helmets tomorrow, none of us would be abducted by aliens.
Plus, wearing the helmets might make it harder to hear when people call you “clinically insane” or “retard” or the other epithets that some people like to hurl at autistic people.
But if you could hear them jeering at you while you were wearing the helmet, then you could give them a really good head bonk with it on.
Sev: So … the fact I interpreted his declaration that his doctor (who told him TD-DMPS couldn’t be prescribed was because it wasn’t FDA-approved) wouldn’t give him TD-DMPS due to a power struggle between the doctar and Buttars as indicating he DIDN’T know that TD-DMPS isn’t FDA approved means …
… what? That I’m “clinically insane” for saying it’s not approved?
That my point that he rejected OTHER things for not being FDA approved makes his acceptance of TD-DMPS inconsistant is somehow false?
Help me out here. Why am I way out of touch with that comment?
Everyone keeps harping on the misplaced clinically insane comment. I can take the criticism. I’m pretty sure that I won’t be using it again. Point made. The next time maybe I will be replacing it with whacko or baby killer … Those words seem to fly right past most of you.
-Sue M.
Well, since I haven’t killed any babies lately, I don’t take it NEARLY as personally as an attack on my sanity, which has at least a tiny dose of meaning to it, Sue.
Of course, I’m NOT insane … but thinking differently from the norm is sometimes enough to get one called that, and I do get a little defensive when people who seem to think that rationality is inferior to emotional arguments insult MY sanity, yes.
Would you like being called a child abuser for giving your kid biomedical treatments? Because that’s got about the same level of accuracy.
Sotek wrote:
“Well, since I haven’t killed any babies lately, I don’t take it NEARLY as personally as an attack on my sanity, which has at least a tiny dose of meaning to it, Sue”.
-I’m sorry that you took the comment that way. I know that you may not believe this but honestly, I did not mean it as an attack on anyone’s true “sanity” or mental status at all. I get it now that I was out of line for using that term. Yes, I have learned something here. Really, when you go back and look at the discussions which were going around previous to my comment such as: Whacko parents who use biomedical treatments, David insinuating that some of us would even consider the phrase better dead than autistic, the “not enough lead theory”, etc. There really was what I consider rude and foolish comments going around. I picked an innapropriate term to describe it. For the record, my son has “sensory integration disorder” and has been getting picked on at school lately… I am not one who is out to malign anyone for ANY reason when it comes to this. If you don’t believe anything I say, at least believe that.
-Sue M.
SueM: “The next time maybe I will be replacing it with whacko or baby killer”
Proves my point.
SueM has no empathy and no genuine remorse for her comment at all. I don’t care about the “maybe” in there… the fact that she can consider using such language (and expect others not to use similarly nasty language at her) shows how non-genuine her “apology” was.
Both the other terms are as bad as “clinically insane”, but SueM doesn’t really care… as long as she gets to hurl insult after insult at people who do not agree with her views.
She then balks at having nasty language hurled back at her. Can’t have it both ways.
She’s lucky it isn’t *my* blog.
SueM: “Point made”
Yes. It was made, but evidently it didn’t stick in her head, did it?
SueM: “Everyone keeps harping on the misplaced clinically insane comment”
And the totally non-empathic SueM demonstrates how much of what gets said here sinks into her mind.
SueM’s brain/mind is made of teflon. Fuck all sticks to it.
David wrote:
“Both the other terms are as bad as “clinically insaneâ€, but SueM doesn’t really care… as long as she gets to hurl insult after insult at people who do not agree with her views”.
-David, you are misunderstanding my point. My point is that others on “your side” have called us whackos and have called some of us babykillers. Would you like me to point out those references? I guess I didn’t make it clear. David, be assured, I wouldn’t spend a minute on your blog. You and I just don’t mix very well.
-Sue M.
SueM: “I did not mean it as an attack on anyone’s true “sanity†or mental status at all.”
So what DID you mean it as?
SueM: “I’m sorry that you took the comment that way.”
What the fuck kind of apology is that? You’re sorry that Sotek took your comment in a particular way? But you’re not sorry that you were using offensive comments anyway?
That’s a classic way of avoiding accepting responsibility for your behaviour!
Accept that!
SueM: “David insinuating that some of us would even consider the phrase better dead than autistic”
When the lad who died in chelation died, the major concern for the mercury lot was not that a child died needlessly…. but that the doctors involved wouldn’t get into trouble!
There was fuck all concern shown for the fact that a child died with absolutely fuck all need to do so!
The impression gained by most here (if not all) was that “better dead than autistic”.
SueM should read this: http://www.kevinleitch.co.uk/wp/?p=265
David-
I am choosing not to engage with you any longer about this. It is obvious that you and I disagree and that no matter what I say, it will not be good enough for you. I am sorry that I have offended you.
-Sue M.
Sue: People on your side have expressed the “better dead than autistic” belief. Never in so many words, of course – that’d be bad PR.
But when the common response to a treatment killing a child is “Well, it hasn’t killed all the kids who’ve done it, and WE CAN’T STOP OR OUR KIDS WILL BE AUTISTIC FOREVER!!” … yeah, that’s the same stance.
Thank you, Sotek. Thank you.
Sotek,
What you missed when you commented on my son over on Pat Sullivan’s blog was that I already pointed out that the doctor would not prescribe TD-DMPS because it was not FDA approved but prescribed another chelator that was also not FDA approved. I pointed out that both were not FDA approved. My point was that the doctor gave me this big liability lecture about Dr. Buttar’s formula being not FDA approved but then he writes us a prescription for a different non-FDA approved chelator. I didn’t care that they were not FDA approved, like FDA approval really means anything.
By the way, they are both FDA approved for compounding. Like FDA approval really means anything.
Sotek said,
People on your side have expressed the “better dead than autistic†belief. Never in so many words, of course – that’d be bad PR.
No one is saying “better off dead than autistic”! No one! Notta!
In my opinion, our kids are better off the way they were, developing typically until they were around 18-36 months of age. Not better off dead!
They were not born this way. If they were born this way, show me one study that proves it. If you’re a religous person, god didn’t create these kids this way. Conventional medicine did this and alternative medicine is taking it out. Notice, I said “in my opinion”. Whatever that’s worth. That and a dollar will buy you a $.99 cup of coffee.
What’s the third leading cause of death in the United States, or if David Andrews wants to answer, let me ask in a different way so that he will better understand. What is the fucking third leading cause of fucking death in the United fucking States?
Just kidding David! Merry Christmas!
Sotek wrote:
“Sue: People on your side have expressed the “better dead than autistic†belief. Never in so many words, of course – that’d be bad PR”.
-I’ve never heard anything similar to the comment “better dead than autistic” in ANY of the biomedical boards that I am on. Not even close. The only place that I have heard it is here. Now, I look back at Kev’s posting where you were talking about the little boy’s death and I see some of the comments that you may be speaking about such as:
EoH board quote:
” And what are the alternatives? Life in a gastro hell with seizures”.
“But it only strengthens my and my husbands resolve to do everything we can to help our Ryan. His life was a tortured hell before biomedical…”
Sotek, don’t these quotes indicate to you a sense of despair, frustration, sadness, etc. about a MEDICAL issue as opposed to Autism itself? Here, they are talking about serious GI issues, etc. Now, I know that Kev has been able to separate these two ideas before (autism and medical issues) by saying that being autistic and having serious medical issues (ie GI distress, etc) are TWO separate things. I am assuming that you would agree with this. So, here it looks as if you are trying to combine them together again because it fits your argument. Is that legit? It is my believe that the parents that I have access to everyday on the biomed boards are MOST concerned about their child’s medical difficulties. Things like GI problems, food intolerances, etc. from toxicity issues. Many are able to see that once those problems are addressed many of the other issues seem to improve.
On that old post, Kev wrote:
“Better dead than autistic. Better dead than an inconvenient ‘parents worst nightmare’. Better dead than making me get off my fat arse and work with my child”.
-What do you say to the parent (fat arse or not) who is unable to work with their child because their child is in serious discomfort the majority of the time? How do we address that? I understand that this is not the case for all people on the spectrum. I understand that many do not suffer from these medical issues at all BUT many do. They deserve the same respect that many of you want. Stop labeling them as “only” autistic when, in fact, they have serious medical concerns along with their autism diagnosis.
-Sue M.
SueM: “Things like GI problems, food intolerances, etc. from toxicity issues. Many are able to see that once those problems are addressed many of the other issues seem to improve.”
Now THAT is different.
If the issues in GI tract or the food intolerences etc are from toxicity or not, it doesn’t matter… they need to be sorted. My and my ex did that with our daughter, and she remains an autistic child… but a far happier one.
SueM: “Stop labeling them as “only†autistic when, in fact, they have serious medical concerns along with their autism diagnosis.”
This issue of medical concerns along with autism is actually a separate issue, and should be dealt with as such… even if there is a strong correlation. However, I do actually agree that – if another issue is presenting alongside that set of things which gets the diagnosis of autism, etc – then those issues too should be identified. I have fuck all patience for diagnostician who refuse to do dual dx (or even other multiple) because they think that it’s *being greedy* (I ask you…..!) to need more than one dx (this actually happens in Finland!).