Saturday, January 06, 2007

FOR WHAT IT’S WORTH

The title of this post comes from an old Buffalo Springfield song, written and sung by Stephen Stills:
There’s battle lines being drawn,
Nobody’s right if everybody’s wrong.
It’s been a while since I last wrote directly about the neurodiversity movement. For a period of time, we had a conversation going on here that involved responsible ⎯ and some less than responsible ⎯ voices from differing viewpoints. But the conversation died out when it became clear that we were speaking different languages, with the line drawn over the definitions of three words: autism, cure, and acceptance.

We can’t agree on the nature of autism. While most of us in the biomed community see autism as a physical disorder with varied mental, behavioral, biological, and neurological sequellae, some ⎯ but not all ⎯ vocal espousers of neurodiversity see it more as a different cognition that may involve certain challenges but needs no cure.

Ah, cure: now there’s a word we can’t agree on. You can’t even get the same definition among those of us who are curebies. There is truly a spectrum running between a few who think no intervention at all is necessary, and a few who think the idea of intervention is necessary to create some mythical status of “normal” (when the essence of human “typicality” is diversity). Most of us fall somewhere in the middle of that spectrum, and yet we tend to identify ourselves as either pro-cure or anti-cure.

Those who are anti-cure argue that the pro-cure folks lack acceptance of their children. Most of us who are pro-cure on the other hand, will gladly say that we accept our children; what we can’t accept is something inside of them that goes well beyond what genetics intended for them ⎯ something that prevents them from using all of the gifts that genetics have bestowed on them.

What has divided the two camps, however, is more than just the definitions we give the words we use; the divide really results from philosophical differences that can’t be resolved. Although we have been able to politely listen to one another on questions about the nature of autism, the root causes of autism, and the matter of acceptance, there is one difference that seems to keep us from even being civil to one another. That is the issue of “cure.”

It is ironic that most of us agree that some intervention is necessary (even if we can’t agree on the nature of the intervention), and yet we divide ourselves over the word we use to describe the process of intervention.

Truly, battle lines are being drawn and the rhetoric is escalating. Lately I have seen measured responses to attacks by members of the on-line neurodiversity movement. My particular favorite, a commentary in the Huffington Post by Lisa Stagliano, makes the point quite nicely, and with a fine sense of humor, that all of our children have unique challenges, and nobody ⎯ but nobody ⎯ can define the autism experience for our children and dictate the right road.
I will never stop trying to help my girls recover from their autism. I can not tell you what recovery means. It varies by kid and according to God’s grace. If recovery means only that Peanut understands she should sit on the toilet, not play in the toilet, I’ll take it.

Recovering your kids doesn’t mean denying their value as people. To the contrary, it means we are willing to devote our lives, our savings, our sanity to their improved health, development and well being.
Most of what I have seen from the other side lately after Lisa’s piece, or the recent opinion piece by David Kirby, also in the Huffington Post, have either hit on the same, tired themes of how there is no epidemic and it’s nothing to be cured, etc., or there have been howls of protest that some are using the word “neurodiverse” to describe the adherents of the neurodiversity philosophy.

Okay, I get it. Neurodiversity is not a condition but a philosophy. But let’s face it; “the neurodiverse” is a lot easier to type out and reads more cleanly than “the adherents of the neurodiversity philosophy.” I suspect that’s the prime reason the term came into use rather than any intention of using it in a derogatory manner. Can the same be said for the constant labeling of all of us in the biomed community as “members of the mercury militia?”

Although most of us believe quite firmly that mercury poisoning has played an active role ⎯ and perhaps the key role ⎯ in triggering our children’s autism, and that some of the symptoms we see are consistent with heavy-metal poisoning, it is equally true that most of us now accept that we must look beyond the question of mercury to help our children. Of course, the neurodiversity community knows that. Their favorite target is Andy Wakefield, whose work (which has been replicated, something that tends to be ignored) has little to do with the question of mercury poisoning.

Despite its inaccuracy, I haven’t seen anyone complain about seeing the term “mercury militia” used with an obvious tone of derision. Most of us realize that there are far better things to be worried about than what we are called. So go ahead and call me a member of the mercury militia if you like; I’ll wear it as a badge of honor. I’ll gladly be a little militant if it means helping recover my child and perhaps help prevent the need for recovery in children yet to be born.

In the meantime, I will continue to keep reading what the adherents of the … oh, what the hell … the neurodiverse (some of whom I am lucky enough to consider friends) have to say in the hopes that I can learn more about autism from those who have something to say. And I hope some day that a civil dialog may resume. But I won’t hold my breath.

29 Comments:

Blogger mcewen said...

As a new blogger the controversy between the parents of autistic children claiming to be on opposite ends of their own spectrum, is distressing. I strongly adhere to a united front regardless of any underlying differences in principals and approach. 'Reasonable people can agree to differ,' may be a platitude but I believe it is appropriate in this forum.
Cheers

1/6/07, 7:02 PM  
Anonymous Anonymous said...

Please link to the pubmed page where Waker's study was replicated.

"Truly, battle lines are being drawn and the rhetoric is escalating."

Seems that way, see below:

"hit on the same, tired themes of how there is no epidemic and it’s nothing to be cured, etc., or there have been howls of protest"


"all of our children have unique challenges, and nobody ⎯ but nobody ⎯ can define the autism experience for our children and dictate the right road."

JB Handley and the Geiers disagree.

1/7/07, 4:55 AM  
Anonymous Anonymous said...

Expect to see the mainstream media, TIME, Newsweek (even) US News (already) to start stating the fact that there hasn't been an epidemic as a fact. Expect to see the mainstream media understand that "neurodiversity" does not in any way equal "autistic adults". Notice that "autistic adults" is pretty easy to write and more accurate than "ND" or neurodiverse for autistic adults.

People like Estee and Kathleen Seidel who are not autistic themselves might prefer to be called "pro-neurodiversity" or something like that, though, again, "neurodiversity" is not about autism, it's about all kinds of people who are labelled non-typical, and usually "unwanted."

Right now if you call Kathleen "ND" many people will think that means she's autistic.... because it's been used as a slur against autistic people.

Too bad you missed the point that there hasn't been an autism epidemic and too bad that you missed the so called "replications" of Wakefields work were shams like his original work which found no measles at all in the kids, not in their intestines and not in their CSF (for which they were subjected to dangerous spinal taps). Trivia: one of the original twelve kids studied by Wakefield suffered a punctured intestine from the scoping they did. That's a little more that "ooops" when they didn't need to scope the kid and there was nothing special about "lymphoid hyperplasia" anyway. It's found in lots of people, who aren't autistic.

1/8/07, 3:07 PM  
Blogger María Luján said...

Anónimo

The fact that certain people have certain kind of language approach to ASD and the neurodiversity concept is totally different to dismiss the true problems that many autistic people have, even if this people mention them as part of their presentation of ideas.
To confuse all as the same and to say that all has been said on for example viral/bacterial/immune concomitant problems to the diagnosis in autism is- at least- very premature, especially with for example the extremely high mutation rate of MV and the capability of exchange of RNA with other viruses, mainly with an abnormal immune system, the hidding ability of MV and many many other facts about virology/specific immunology that even the experts are prone to recognize their lack of evidence/studies in autistic people.
About lymphoid hyperplasia, it´s found in lot of people and it is considered as a sign of immune dysfunction , such as you can see here, with also other facts
Focal-enhanced gastritis in regressive autism with features distinct from Crohn's and Helicobacter pylori gastritis

It seems that a subgroup of children with autism has a distinctive- difficult to specify- intestinal condition.

These findings demonstrate a focal CD8-dominated gastritis in autistic children, with novel features. The lesion is distinct from the recently recognized focal gastritis of Crohn's disease, which is not CD8-dominated. As in the small intestine, there is epithelial deposition of IgG.
*CD8 is a glycoprotein- that is a protein with a sugar attached- When the cytotoxic T-Cells have a CD8 attached they are called CD8+Tcells. A cytotoxic T cell is a cell that can kill cells infected by viruses or other pathogens after activation.
*The epitelial deposition of IgG is suggestive of gut autoimmunity following
Torrente et al
* Relation of intestinal inflammation with food allergy has been presented also by other authors
1-Lymphonodular hyperplasia on the mucosa of the lower gastrointestinal tract in children: an indication of enhanced immune response?
2-Intestinal lymphonodular hyperplasia of childhood: patterns of presentation
3-
Lymphonodular hyperplasia of the terminal ileum associated with colitis shows an increase gammadelta+ t-cell density in children.

* The gamma delta +Tcells may be our first line of defense, limiting the extent of infection until an MHC restricted alfa/beta response can be mounted. These cells may recognize bacterial peptides OR heat shock proteins produced in infection areas.

CD8 T Cell Recall Responses Are Regulated by the Tissue Tropism of the Memory Cell and Pathogen


4-Diagnostic role of upper gastrointestinal endoscopy in pediatric inflammatory bowel disease

Nothing is so simple as it is presented by the journalists and by many other people, especially related to autism . And even when Wade can present his defense extremely well, I consider he has not missed the point.

Today, dialogue has become almost impossible/inexistent. And this is part of the point, IMHO , of Wade.

1/8/07, 7:20 PM  
Blogger kristina said...

If all could think "dialogue," I think (I would hope) we might make some progress in talking about these discussions----it's easy (for me, at any rate) that once you step outside of Autismland the curebie/neurodiversity disputes seems like fine distinctions. It is still not easy to get those who are not "directly" in contact with an autistic person to pay attention and think about the complexity of the issues, and your (as ever, very thoughtful) posting here helps to maintain perspective.

And dialogue.

1/8/07, 7:35 PM  
Anonymous Anonymous said...

Maria, I could be anonima.

First of all, since you're the brains on this site, could you provide a PubMed link to the study that Wade is touting? I want the non-basura, peer-reviewed, PubMed-indexed article. Please. Because I really don't want to think that Wade is a filthy liar who speaks with dismay about rhetoric all the while blathering on in typical spin doctor fashion. Maybe I should say, howling in spin doctor fashion.

About the links to the varied literature you posted - what does that have to do with lying about finding MV? For a second there, I almost took you to be a Wakers apologist looking for some complicated answer as to why his experiments shouldn't be dismissed out of hand simply due to his scientific incompetence. You know very well that any graduate student in your department would be admonished severely for pulling the kind of meidra that Wakers got away with.

Let's get beyond Wakers and simply ignore the entire MMR lie, it's distracting away from the real issue, which is thimerosal, unless you consider the California numbers in which we start to rely on Aluminum, and when we realize that's a garbage theory we start to blame testosterone, which leads us to the Kings of Plagerism and Make-Believe-Science, over whom Erik Geier-Apologist Nanstiel fawns.

By the way, it was nice to see Brian Deer kick that guy's ass. But as a believer in psychics, I guess Erik saw that coming.

1/9/07, 8:53 AM  
Blogger mommyguilt said...

I had a nice long comment a moment ago until my computer decided to have a brain cramp.

I agree that we absolutely must have a dialogue. We need to agree to disagree and to accept that other people will disagree with us just as we may disagree with them.

Whether you are pro-cure/anti-cure, environment, genetics, mercury, complications at birth...whatever, it doesn't matter...we can learn from each other. We need to have grown-up conversations.

We cannot stop this from happening to future generations until we figure out, definitively, what factor(s) are causing autism. Only then can we work towards making autism a thing of the past.

Let us educate each other instead of bashing each other. I'd like to find a cure, but that most certainly, under NO circumstances means that I deny my son's value as a human being. His father does plenty of that.

Our children, as we ourselves, are affected by different points on the spectrum - some at the extreme low functioning end of autism, some at the high functioning/asperger's end, and some smack dab in the middle. What we have in common is the spectrum. We're all there. It's in all of our lives. It IS all of our lives.

If "she" says it's genetics and "he" says it's mercury and "someone else" says it's both, and "she" says anti-cure, and "he" says cure, and all insist that their way of thinking is THE end all be all, and all else are wrong and totally crazy, then will we EVER make any progress?

Let's keep the lines open. Let's keep our minds open. Let's keep talking and see where our conversations lead.

Thanks, Wade, for bringing this back to the front!

1/9/07, 12:50 PM  
Blogger María Luján said...

Hi "anonimo"
you said
"Maria, I could be anonima".

Of course, I only answered to the “anónimo” description of your post.

This is a-non exhaustive-. list of manuscripts with the finding about measles and immunity problems related to measles :

Ashwood P et al. Intestinal lymphocyte populations in children with regressive autism: evidence for extensive mucosal immunopathology. J Clin Immunol. 2003 Nov;23(6):504-17.

Torrente F et al. Small intestinal enteropathy with epithelial IgG and complement deposition in children with regressive autism. Mol Psychiatry. 2002;7(4):375-82, 334. PMID: 11986981

Furlano RI et al. Colonic CD8 and gamma delta T-cell infiltration with epithelial damage in children with autism. J Pediatr. 2001 Mar;138(3):366-72.

O'Leary JJ et al. Measles virus and autism. Lancet. 2000 Aug 26;356(9231):772.

Quigley EM, Hurley D. Autism and the gastrointestinal tract. Am J Gastroenterol. 2000 Sep;95(9):2154-

Kawashima H et al. Detection and sequencing of measles virus from peripheral mononuclear cells from patients with inflammatory bowel disease and autism. Dig Dis Sci. 2000 Apr;45(4):723-9.

Vijendra K. Singh, Ph.D. Autism, Vaccines, and Immune Reactions. IOM presentation, Feb 9, 2004.

Singh VK, Jensen RL. Elevated levels of measles antibodies in children with autism. Pediatr Neurol. 2003 Apr;28(4):292-4.

Singh VK et al. Abnormal measles-mumps-rubella antibodies and CNS autoimmunity in children with autism. J Biomed Sci. 2002 Jul-Aug;9(4):359-64.

The genetic susceptibility to the altered management of xenobiotics (including vaccines) is a clear component of the Picture. Recent published work such as
this is important to address the impact that environment can have in autistic people.
I imagine that you are talking about
Pediatrics. 2006 Oct;118(4):1744-5.
No evidence of persisting measles virus in peripheral blood mononuclear cells from children with autism spectrum disorder.D'Souza Y, Fombonne E, Ward BJ.
Division of Infectious Diseases, McGill University

However, unfortunately, this work has several problems that their authors acknowledged and it is not a full exoneration of the MMR , such as it was published or promoted.
Obviously, I am not a virologist, but there are several important issues that these authors and many others did not analyze or even consider. Science is out to be discussed and criticized. If they are going to exonerate MMR , I would expect a more rigorous analysis that the one they done.
The viral manipulation of the host cellular and immune environments to enhance propagation and survival: a focus on RNA viruses
Let´s go to analyze what is the core of the scientific debate-Dr Ward et al tell that Wakefield et al did not find measles virus but “something” that does not match with Edmonton strain. They did the full sequence copy considering a particular kind of procedure to avoid contamination. Dr Wakefield et al en general did not the full sequence characterization- and the procedure was no optimum-, but only part, and they say that it is MV This is a very short explanation but it puts the things in perspective.

There is another possibility that neither of them published and no other analyzed/studied/measured. To exonerate MMR, what about mumps and rubella? What about the abnormal immune status that many autistic children have-please look above? Beyond stress contribution the GI issues immune related are more and more published as found in higher percentages in ASD vs non-autistic- and in this sense I included the LHN citations. The MET findings are particularly interesting, such as the neuropeptides recent research on the topic.
Measles as an RNA virus has a very high level of mutation at each replication. RNA viruses can also exchange RNA material with other viruses and of course with human host.
a-Why is going to be the full sequence of the “something”Ward et al detected Edmonton strain if a persistent infection with cyclic replication – such as it is found in otosclerotic tissue, must be considered? What about mutation in vivo of the Edmonton strain, the possibility of exchange with mumps and rubella of RNA information AND obviously the presence of human RNA? What would be the management of an abnormal immune answer such as it is demonstrated in ASD of this kind of viral mutation in vivo because of the abnormal answer ?
b-Where are the homology studies TO DISCARD that the “something” has not mumps and rubella sequences and the consideration of the possibility of a mutated MV?
c-Wakefield et al can be partially wrong, such as Ward et al. With the possibility of avian leucosis contamination and the introduction of reverse transcriptase, where are the detection of reverse transcriptase in autistic children to discard the possibility of “chimeric” measles in vivo, attenuated but with cyclic replication?
d-Research on viruses is continuous
Multiple Amino Acid Substitutions in Hemagglutinin Are Necessary for Wild-type Measles Virus to Acquire the Ability to Use Receptor CD46 Efficiently

Why do you think that the explanation is so easy such as “they did the wrong procedure”? To say this, ALL the other possibilities must be discarded, including the limitations of PCR techniques.
Measles is very tricky to be detected:
Acta Otolaryngol. 2006 Aug;126(8):811-6. Links
Molecular detection of measles virus in primary cell cultures of otosclerotic tissue.Gantumur T, Niedermeyer HP, Neubert WJ, Arnold W.
Department of Otorhinolaryngology, Klinikum rechts der Isar, Head and Neck Surgery, Technical University of Munich, Ismaningerstr. 22, 81675, Munich, Germany.

CONCLUSION: Primary cell cultures were established from otosclerotic/otospongiotic footplate bone particles. Although this procedure is time-consuming, the quality and quantity of RNA isolated from these cells were much higher in comparison with the direct isolation of RNA from footplate bone samples and the preparation was more suitable for the detection of measles virus (MeV) RNA. OBJECTIVE: Morphological and biochemical investigations suggest that persistent MeV infection participates in the development of otosclerotic foci. However, this hypothesis is controversial because the detection of MeV in otosclerotic foci is inconsistent since the results are dependent on the presence and stage of foci in the investigated bone particles. Unfortunately, this cannot be confirmed before investigation. To study the presence of the MeV by different techniques in otosclerotic foci, stapes footplate fragments were collected during stapedectomy from patients suffering from clinical otosclerosis. MATERIALS AND METHODS: MeV-specific RT-PCR was performed on total RNA isolated directly from four fresh frozen footplate bone fragments and from the cells of 16 primary cultures of otosclerotic tissue samples. In order to rescue persisting MeV, the primary footplate cells were cocultured with MeV permissive B95a cells. RESULTS: MeV was not detected in RNA from fresh frozen otosclerotic materials, but analysis of the RNA from 5 of the 16 primary cell cultures showed MeV-positive results. Nucleotide sequencing of a 317 bp MeV-specific RT-PCR fragment confirmed the presence of the MeV RNA genome. Here, we report the first determination of MeV sequences in total RNA isolated from primary cells cultured from otosclerotic tissue. Persisting MeV in primary footplate cells could not be recovered by coculturing with B95a cells.
Or
Acta Otolaryngol. 1995 Mar;115(2):300-3. Links
Otosclerosis: a measles virus associated inflammatory disease.Niedermeyer HP, Arnold W.
Department of Otorhinolaryngology, Head and Neck Surgery, Klinikum r.d. Isar, Technical University, Munich, Germany.

The etiology of otosclerosis is still unknown. Immunohistochemical studies have revealed the characteristics of chronic inflammation in the otospongiotic area. Paramyxoviral structures have been identified by electron microscopy and the expression of measles virus antigen has been observed by immunohistochemistry in active otosclerotic tissue. By use of the polymerase chain reaction, measles virus related sequences have been detected in otosclerotic bone tissue but not in control specimens. The aim of our study was i) to detect measles virus genome in affected patients using a more sensitive PCR system and ii) to search for anti-measles virus IgG in the perilymph. In 13 out of 14 specimens of bone fragments from surgically removed stapedes of patients suffering from otosclerosis, measles virus RNA sequences could be detected while other tissues from the same patients and from a negative control group lacked such sequences. Furthermore, IgG anti-measles virus antibodies were detected in the perilymph of 6 patients. Our results support our previously stated hypothesis that otosclerosis is a measles virus associated disease which provokes a local immune response within the inner ear.

The problem in these studies (also of inflammatory status therefore related) was a) the timing because of the possible status of the virus as non-replicative and b) as a persistent infection, the localized (very) of the RNA virus in certain tissues/zones.
Again, very tricky to detect. There have been also a lot of discussion about the viral nature of the Chron´s but the kind of lesion and immune answer found in Autism – CD 8 mediated detected up to now- is different from Chron. BTW,Dr Ashwood reported that several of his patients have an hyperimmune answer- and it has been reported including to measles - whereas other have an hypoimmune answer. High titers to MMR have been found in some children with ASD, such as happen in otosclerotic patients.

Well, where are the published manuscripts to discard in autistic people of all ages all the possibilities I have mentioned to you?

To comment about ASD research, you do not need to have a PhD in something. It helps to the most rigourous aspects but you only need to research and to have open mind and idea of scientific rigor. And interest.
You say
"Because I really don't want to think that Wade is a filthy liar who speaks with dismay about rhetoric all the while blathering on in typical spin doctor fashion. Maybe I should say, howling in spin doctor fashion."

I completely disagree with you about Wade. He is not a liar, his analysis are well thought and prudent.
You said
"About the links to the varied literature you posted - what does that have to do with lying about finding MV? For a second there, I almost took you to be a Wakers apologist looking for some complicated answer as to why his experiments shouldn't be dismissed out of hand simply due to his scientific incompetence. You know very well that any graduate student in your department would be admonished severely for pulling the kind of meidra that Wakers got away with."

I am an apologist of nobody. I am interested on science. I considered your language out of place here.
BTW your comment about me, is totally not fair and out of order. I consider that in Wade´s blog his contributions- and from many of the posters here- are extremely valuable, important and sound to me and they have enriched my life and my understanding of ASD. As a scientist, the wrong doing of a procedure in a peer reviewed study is the last option I choose when I analyze science, because it is the more easy, especially if they do not match my own experiments. Generally-and mainly in medicine-Occam´s Razor is being replaced by the idea of inherent complexity, esepecially in highly systematized and interconnected systems.

In general, I do not consider journalists opinions much more than journalists opinions and their analysis, valid only in certain contexts.

Wade, I apologize by the space in your blog with this answer.

1/9/07, 2:06 PM  
Blogger Ian Parker said...

This comment has been removed by the author.

1/9/07, 6:11 PM  
Blogger Ian Parker said...

I quite like this post.

Just a few thoughts:

Regarding the neurodiversity label, I tend to think in terms of the neurodiversity community, neurodiversity proponents, and neurodiversity advocates, using ND as an abbreviation sometimes, and I think that these are the terms that I’ve been using when writing. I definitely don’t use these terms as a slur, and if they are, that is not the intention.

I’d also agree that the ‘debate’ is getting a bit repetitive – 'tedious' also comes to mind. Even when there is some deviation from the usual themes, the comments usually become fairly interchangeable after the first few. Sometimes I feel that this is the ND equivalent of ABA, breaking things down into small component parts and repeating ad infinitum. At that point I start looking around for the M&M payoff, but I guess I’m expected to supply my own?

Regarding ‘cure’, while most agree that some intervention is necessary, I think one of the major differences is that the ND side sees the purpose of intervention as to support accommodation rather than ‘fixing’ what they don’t see as requiring a ‘fix’. I quite like the way Wade framed up the pro-cure side’s approach:

“Most of us who are pro-cure on the other hand, will gladly say that we accept our children; what we can’t accept is something inside of them that goes well beyond what genetics intended for them ⎯ something that prevents them from using all of the gifts that genetics have bestowed on them.”

I think the difference is that the ND side tends to bundle together the idea of ‘cure’ with changing ‘who they are’ or – a thought probably shared by more than a few on the ‘cure’ side and in the population in general - the idea that if ‘cure’ is a goal then in their ‘non-cured’ state they are perceived as being of diminished value or worth. I can see how these thoughts came to be bundled together, but I’m not sure why such couplings should be just accepted or even assumed to be correct rather than being challenged. Unfortunately this is too complex an idea to be stated in a comment, but it is probably worthy of further exploration. Until these ideas are de-coupled, I would suggest that the divide between the various sides will remain.

1/9/07, 6:16 PM  
Blogger Wade Rankin said...

Sorry to be away for awhile, but I've been a little busy elsewhere.

Anonymous,

The two Singh studies Maria cited were what I had in mind, although there are certainlly others as well. I would also appreciate a more civil tone from you, but I try not to censor nastiness that is only directed at me and I won't start that unless it gets really offensive.

1/9/07, 7:14 PM  
Anonymous Anonymous said...

Relax and don't howl about it, Wade. A good little hypocrite knows
when to quit.

Aaah, the Singh papers. And I thought you couldn't lowball lower
than Wakefield. Have you read them? Don't answer, I already know
the answer. Would you like me to tell you a nice little story about
them? They suck. Plus, they don't replicate MV RNA studies because
there was NO PCR and NO RT done. There's simply a very dirty Western
that gets quantified. The background of the blot is higher than the
audience at a Petty concert. Sounds like a joke, huh? You tell me
that Waker's experiments were replicated and you pull out Singh.
Maybe you meant to say Krigsman, the spoken tale passed on from DAN!
to DAN!?

Maybe I can rephrase the request: please show me the valid journal
article that replicates Waker's findings. A bolus of articles
dealing with antibodies are cirmcumstantially interesting (if they
were competent), but don't answer the question. You are defending
Wakefield and I'm calling you out to support it.. Maybe the next
time you call (listen to the bootlickers come running) for civility,
you ought to think about practicing it first.

And please, don't make me read any more of Singh's papers - they suck
almost as hard as Wakers himself.

BTW, it dissapoints me to hear this coming from a scientist: "To
exonerate MMR, what about mumps and rubella?" Guilty before proven
guilty? Even Wakers was assumed to be right initially and given the
chance to defend his junk, which never happened. God help a graduate
student who's faced with that kind of advice.

1/9/07, 8:24 PM  
Blogger Wade Rankin said...

Okay, here's the thing Anonymous. This post was not so much about Dr. Wakefield as it was about the inability of certain parties to the discussion to move past their little agendas in the hopes of listening to one another. I think you are helping to prove why the dialog is languishing.

As I indicated before, I have a pretty high tolerance for personal insults. I've known plenty of assholes in my day, and I guess there's always room for more. Still, I think you've said what you wanted to say multiple times. Maybe it's time for you to move on.

1/9/07, 9:10 PM  
Blogger María Luján said...

Anonymous
You demonstrated with your words exactly what Wade wanted to show.
Phylosophy of science development relates about how much we can construct validated theories based on previous work, even if uncomplete based on the merit of the idea. Perhaps the best current parallel is the cord theory and the supergravity in the field of physics and the search for "the overall theory"- in terms of complexity.
And about these ideas on MMR I did not say nothing about proofs, but about lack of studies in autistic people.You are entitled to think what you want about me, this does not make your opinion the true- mainly because simply you are not interested on discussion- and tells much more about you than about me.

1/9/07, 10:29 PM  
Blogger Joseph said...

There's a difference between bringing attention to any co-occurring medical problems autistic children have (and it's scientifically debatable which are truly in this category) and demonizing autism. It's possible to speak of AIDS, for example, without demonizing homosexuality. And it's possible to do the opposite. Do you see that?

In your view, Wade, parents trying to cure a homosexual child would be accepting of that child or not? What if the child was an adult and had Hepatatis as a direct result of homoexuality, for example?

1/10/07, 11:03 AM  
Blogger Fore Sam said...

Joe, You bring up homosexuality a lot, are you gay?

1/10/07, 9:18 PM  
Blogger Wade Rankin said...

Joseph,

I would not seek a cure for a homosexual because it is not disabling. I'm assuming your point is that autism, in and of itself, is not disabling. That is one of those issues that divide us; you see the disabling characteristics as resulting from "comorbidities," whereas I would see them as part and parcel of autism. Whether those characteristics are qualitatively dominant enough to be truly disabling is the question, and the answer is different for each autistic individual. You may not need the kind of interventions my child needs, but you are not in a position to know my child's needs.

1/10/07, 10:06 PM  
Blogger Joseph said...

No Wade, the anti-cure position, either in homosexuality or disability, is not related to whether the condition is disabling. There's something called the social model of disability which exists in opposition to the medical model of disability.

Another example might be left-handedness, which is clearly disabling if not accomodated.

Why is disability in absolute need of a cure? What is the foundation of this idea?

I can find you medical opinions from a long time ago about how homosexuality must be treated and cannot be accomodated because it causes a lot of suffering and so forth.

My point about how it's possible to demonize a minority using associations is also not related to disability in any way, and you did not address that.

To John: No, I'm married and have a son, remember? (Not that some married men might be gay actually).

1/11/07, 11:28 AM  
Blogger Wade Rankin said...

Well, Joseph,

Once again my point is made by someone else. You are entitled to opinions, which should be accorded due respect, but you are not entitled to ignore opinions of others. Neither are you entitled to tell me what my opinion must be if I am to be a member of the cure community.

Of course, it's possible to demonize a "minority," but that's not what this is about. Most of us aren't into demonizing our children because they're autistic. As I have often -- very often -- stated, interventions should be specific to a condition, and the benefits and risks must be weighed. The extent to which a particular condition is truly disabling is an obvious factor to take into account. Most of us take that process pretty seriously.

1/11/07, 5:48 PM  
Anonymous Anonymous said...

I felt compelled to share something with you. Forgive me if I take up a lot of comment space, but I think it's important.

I'm the mother of a 6 year old autistic boy. I have been having him treated biomedically (not chelation, though) for the last year.

A couple of weeks ago, I decided to explore the blogs, to get a sense of not only what those of us who choose biomedical treatment are talking about, but what those in the autism community as a whole were talking about.

I've seen the degeneration you speak of...on both sides. It scared me...to the point of where I began questioning myself. Not a good feeling at all.

Last night, I gave it up to my higher power and asked for some help in this. This morning, your blog was the first thing I came across. Coincidence? Maybe. But I'd like to think of it as more than that.

Your post put all of this into perspective for me. I think there are those who are prone to a more "militant" (for lack of a better term) mindset on both sides of the issue.

One thing I promised myself and my son when he was first diagnosed, is that I would never lose sight of him. That in my quest to learn all I could about autism (as suggested by his neurologist), the child I loved and adored would still be standing prominently within my vision. And he is...to this day.

I think what has happened to the more militant thinkers of this issue, is that they have lost sight of what is important and replaced it with their adamant quest to be right and stand triumphantly over those they perceive to be wrong. Nobody likes to be wrong, granted, but giving oneself tunnel vision just be viewed as right is only self-serving, IMHO. That's when communications break down. That's when commonalities fall apart...when ego supercedes understanding of one's fellow man.

Anyway, sorry to have rambled. I just wanted to thank you for putting things into a better perspective...and help me keep sight of what is truly important. I've bookmarked your blog, so I plan on being a frequent reader.

All the best,

K. in New Jersey

1/12/07, 9:05 AM  
Blogger Joseph said...

Wade: On what basis do you suppose I've told you what your opinion must be? If I have, then I could say the same thing about most of your blog posts. Apparently you are telling people what their opinions must be by presenting arguments.

And again, David Kirby and Kim Stagliano have demonized autism. It doesn't matter if that was not their intent. It doesn't matter if what they said had some factual basis. Here's an example of something that most people would agree constitutes demonization. No doubt there's some factual basis to what it says. That's not the issue.

Finally Wade, "neurodiverse" is a derogatory term coined by detractors of neurodiversity. Have you ever heard an autistic self-advocate refer to themselves as "neurodiverse"? I would suggest it is no different to any other derogatory term used to refer to any minority, disabled or not.

1/12/07, 10:18 AM  
Blogger María Luján said...

Hi Joseph
As Dr Gernsbacher told very well, it all depends on the eye of the beholder. You consider anything that does not match with your view of ASD a demonization of ASD. This is not true-neither in intention or factual. There are, I do not doubt it, parents/researchers who demonize really ASD, but I do not think it is the majority of parents/researchers in ASD. Because also it all depends on what mind/emotional status certain opinions are written and read and with what preconcepts about, especially considering Who write. What is written and how is understood many times are not the same. The opinions change sometimes-about the tone and the content- depending on WHO is writing. Because A is known to have these ideas therefore whatever is said- no matter how offensive is to those thinking different-is right/helpful. Because B is known to have the opposite ideas to A therefore whatever is said is wrong/harmful. The assignation of certain intentions/agenda, even if they are imaginary, is a very common situation. And qualified as demonizating ( to parents or to autistic people, depending on who is talking).
The positive way to oppose certain extreme positions it is not , IMHO, to develop another kind of extreme position, but it is what has happened here.
And Wade is an exception to these extremisms, such as other people belonging to a minority, a minority I am very proud to belong to. A minority that has been also very much qualified with derogatory terms by people thinking different.
About derogatory terms, the use of"mercury militia" and others- much less educated-, probably is the other side of the coin. And it is not different to any other derogatory term used to refer to any minority. Don´t you think?
Certain defenders of the idea of ND use “mercury militia”/"antivax "- with a lot of other derogatory terms –applied to anyone presenting an environmental contribution to ASD (heavy metals; immune stressors, etc) and I tell certain because ND is an idea that personally I embrace, but honoring diversity of opinions, under my own view. As in the case of Autism and our differences of opinion about what is, the concept of neurodiversity related to ASD has a lot of personal content, IMO.

1/12/07, 12:09 PM  
Anonymous Anonymous said...

Anonymous wrote: "when we realize that's a garbage theory we start to blame testosterone, which leads us to the Kings of Plagerism and Make-Believe-Science, over whom Erik Geier-Apologist Nanstiel fawns.

By the way, it was nice to see Brian Deer kick that guy's ass. But as a believer in psychics, I guess Erik saw that coming."

Anonymous, you're not Kent Adams/Christschool, are you? 'Cause you sound like him. For the record, Brian Deer did not kick my arse. He went on a tirade after I made fun of his diminuitive stature. I found it hilarious that he found it necessary to state twice that he's really 5'9"... which is far from true. He barely reaches my chest, and I've seen him up close in person.

You take snipe at the testosterone/mercury issue without understanding it, or listening to the parents who are treating their children's hyperandrogenicity. Let me tell you this: Lupron is safe for this use. We've had no side effects. And it WORKS. Before Lupron my daughter was a tornado on legs, and twice as furious. We loved her all the same, but were grieved to see how she suffers. Now that we're detoxing her with chelation and a little help from Lupron... she's an amazing girl with possibilities, where she hadn't had them before.

As for the psychic thing... I was talking about an astrologer on EOHarm and some of the uncanny predictions he has made. At least three of them have come true where I'm concerned... but I'm keeping an open mind on such subjects.

Is it really so ridiculous? Any more so than walking on water or turning water into wine... or somehow getting a few loaves of bread and some fish to feed a throng of hundreds? I was raised to believe that... and there's a chance you believe that too. Can you prove that any more than you can disprove the possibility of a sixth sense?

Didn't think so.

Erik

1/12/07, 1:46 PM  
Anonymous Anonymous said...

Joseph said: "There's a difference between bringing attention to any co-occurring medical problems autistic children have (and it's scientifically debatable which are truly in this category) and demonizing autism."

I suppose you have to define "demonize" and then define "autism."

In my daughter's case, we have chronic measles, herpes & rubella infections in her intestines. We have mercury toxicity, an impaired glutathione pathway and a resulting runaway production of testosterone. Whenever we've treated any of those conditions, we saw amazing cognitive and social gains with reduced sensory integration problems.

As a result, we're thinking "keep going, this is working!" We love our daughter, dearly, and tell her so about every five minutes... waiting for the day, hopefully, when she may be able to tell us the same. Considering the severity of her injury at 15 months, and the fact that her biggest medical problem (her gut) has confounded our efforts to heal it... we honestly do not know if we'll recover her completely... or what exactly that recovery will mean. She will likely always be a little different, and we'll accept her as we always have.

But for now, we're desperate to give her a future of her choosing... the ability to be independent and high functioning. If she were as advanced as some of the folks who CLAIM to be autistic... I probably wouldn't be bothering with all this. If she could communicate and support herself as an adult, we wouldn't be here arguing.

Erik

1/12/07, 2:12 PM  
Anonymous Anonymous said...

But the issue Joseph was addressing (I think) isn't whether "most parents" or "most researchers" demonize autism--although I think it's undisputable that many do. The issue is whether Kirby and Stagliano in particular demonize autism. Between Stagliano's self-pitying complaining about how horrible her life is and Kirby's absurd description of autism ("kids who spin like firecracks", "rivers of diarrhea"--what's with the constant bowel movement obsession, anyway?), I think it's pretty hard to argue that they *don't* demonize autism. I think it's rather sad Wade would hold Stagliano up as a positive discussion of civil discourse, but YMMV. Kirby/Stagliano are quite disrespectful towards *autistic people.* Why tolerate intolerance?

-an autistic person diagnosed as "extremely high-functioning" but who nevertheless would have fulfilled several of Kirby's criteria as a child

1/13/07, 12:03 AM  
Blogger Wade Rankin said...

Anonymous,

I have never heard any disparaging words from either Mr. Kirby or Ms. Stagliano directed towards autistics based on their being autistic. But then, based on their words, they -- and I as well -- view autism as something one has and not as something one is. You may disagree, but that disagreement does not give one license to mischaracterize their opinions.

1/13/07, 8:21 AM  
Anonymous Anonymous said...

I agree with Wade on this.

Erik

1/13/07, 8:50 AM  
Blogger Wade Rankin said...

Anonymous,

Your comment is pretty nonspecific. Although there's things that Erik, who I consider to be a friend, and I disagree on, I think he and I are pretty much in tune on the issue covered in this post.

1/13/07, 11:32 AM  
Blogger mommyguilt said...

Hey Wade -

Wanted to let you know how much this post has been in the forefront of my mind lately - After reading and commenting, I went home and talked to PC about it and we both agreed with the idea of no one is getting anywhere - cuz nobody's right if everybody's wrong.

Not 24hrs later, my bro-in-law calls us up and said what a great song that would be for the band to do.

I think that was the sign - We're most definitely thinking about adding this song into our sets, given the current state of affairs in the country it seems appropriate, but additionally, we can dedicate this one to autism awareness!

1/19/07, 11:05 AM  

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