Saturday, November 26, 2005

MS. CLARK

[Note: the following post is NOT about Dr. Buttar or about the relative merits of IV-EDTA; it’s about who I am and why I do this. Please keep that in mind when posting comments.]

Like most bloggers, I spend a little time every now and then checking out what other people are saying. I try to include blogs by people with whom I disagree and yet respect. One such blog I visit on occasion is Kevin Leitch’s Left Brain/Right Brain. Although Kev usually maintains an appropriate tone of civility, the public comments to his posts always seem to degenerate into bitter mud fights because people on both sides of the issue can’t seem to control themselves. For that reason, I decided not to post comments there as often as I once did. Sometimes, though I feel compelled to join in the conversation, hoping to make it a dialog of diverse ideas, but a recent experience shows the folly in doing so.

Kev posted his thoughts on recent reports that Dr. Rashid Buttar now offers IV-EDTA as a chelation protocol. I really don’t know Dr. Buttar; in fact, I may be the only person on the internet that does not have strong feelings one way or the other about the man. But I do maintain an interest in various biomedical protocols that are being tried in the autism world, and that interest includes finding out why IV-EDTA has been used by some doctors. I left a simple comment on Kev’s post trying to explain its place in the biomedical world, and, as could be predicted, the attack came. This time, it was from “Ms. Clark.”

Here’s an excerpt from the first salvo she fired in my direction:
Wade Rankin, you have no idea what you are talking about.



I wish you and your friends, and people like Craig Westover, would stop influencing parents to chelate their kids when you yourselves have no idea of what you are discussing. You pass around third-rate, third-hand knowledge and if you think that you couldn’t contribute to another child’s death you are wrong.

Where is your conscience in this?

I’m really appalled at your behavior, not that you should care what I think of you, but I really must comment. I hope you will all stop playing doctor before another child is killed.

Ms. Clark gives me far too much credit. If she saw my Site Meter reports, she would know my capacity for influence is pretty darn limited. Heck, I think I’m probably on a first-name basis with everyone who visits the site. And judging by the comments that are usually left, I can’t think of anyone who I’ve influenced to try any particular protocol. I can only think of one post that I devoted to the particulars of biomedical treatments for ASD, and that one was pretty much ignored (for good reason; it was not my best stuff). Even that one emphasized that parents who wanted to consider a biomedical approach should only do so in consultation with a qualified physician, and should educate themselves on every aspect of the process. I made the same point that I state pretty often whenever and wherever I write about all this; there is no one-size-fits-all solution.

After I responded at Kev’s blog to some specific mischaracterizations by Ms. Clark, she favored me with yet another comment, and that’s when I decided to write this post. I suppose I could have posted it as another comment to Kev’s blog, but that would have taken the discussion too far from his original point. In any event, Ms. Clark’s second comment that spurred me to respond went back to her original accusation:
You are influencing people to believe that autism can be caused mercury poisoning. That’s what I believe.

If my opinion is not true in the least, then no parents will say, “I’m sorry my child is dead now. I wish I hadn’t believed that autism was the result of mercury poisoning, but we thought that Mr. Rankin had some crediblity and that he must know what he was talking about since he’s a lawyer and educated, and he’s so nice, too.”

Ms. Clark probably doesn’t read much of what I write. While it’s true that I believe thimerosal exposure played a key role in the dramatic increase in autism rates in recent years, and I further believe it played a key role in the development of ASD in my own child, it’s not the whole story. Indeed, I am somewhat of a heretic in that I think ASD is too complex of an issue to place all of the blame on one factor. But that being said, I’ll accept as true that I have stated that mercury poisoning can help trigger ASD. I still find Ms. Clark’s estimation of my influence -- and her underestimation of the intelligence of parents with children on the spectrum -- to be laughable.

I can just picture parents sitting around discussing worries over their child, and one says to the other: “Let’s go to that nice lawyer’s blog … you know, the one who talks about everything but science. He’ll tell us what to do.” Give me a break. I concentrate my efforts on issues other than the science of autism. I tend to address educational issues, the semantics that unfortunately separate the biomedical and neurodiversity communities, the hypocrisy of some vaccine manufacturers, the ridiculousness spouted by one particular doctor, and the propriety of seeking a cure for ASD. The closest I come to writing about scientific issues comes when I discuss the lunacy of the IOM’s reliance on very flawed epidemiological studies. To a certain extent, science has to be mentioned as part of my general discussions, but science is not the focus. I’m more interested in improving the tone of the dialog than I am in trying to win a debate.

Ms. Clark apparently feels my failure to debate anyone on the scientific studies is because I either haven’t looked at the science or because I don’t understand it:
You have bought a lie if you think that in any way your child has become autistic because of mercury in vaccines and that any form of chelation will help an autistic child become less autistic.

If you can counter my statement with science then do it. But you can’t.

I have looked at the science. I don’t know what you are looking at but it’s junk if it’s telling you that any treatment to remove any heavy metal is going to cure your child or in any way rewire his brain.

Teaching him can rewire his brain, up to a point. Mercury is not going to stop him from learning and taking out imaginary or real mercury is not going to improve his learning to the point where he can learn not to be autistic.

What about the minicolumns, what about the Purkinje celsl[sic]? What about the extra white matter. Have you read any of Casanova or Courchesne’s work?

It might surprise Ms. Clark to know that I have looked at the types of studies she mentions, including some of the work of Dr. Manuel Casanova and Dr. Eric Courchesne. In fact I even understand them pretty well. The fact that certain brain architecture is found in some autistics does not necessarily tell me that the clinical indications by which our children are diagnosed with ASD were not triggered in whole or in part by an environmental insult. Nor does the fact that an increase in brain size -- after birth -- has been noted to coincide with diagnosed autism does not necessarily mean that environmental insults, including but not limited to mercury poisoning, do not play a role in causing autistic dysfunction. A decrease in Purkinje cells certainly makes sense in all models of autism to explain the hows but not the whys.

All the studies Ms. Clark mentions, along with numerous genetic and neurological studies not usually cited by “our” crowd, have a place in our developing understanding of the autism spectrum. The biological and clinical studies we more often cite (e.g., James, Burbacher, Hornig, Deth, Wakefield) also contribute to our understanding of the problem. But none of the studies begins to tell the whole story. Despite a mountain of paper, science has only begun to scratch at the surface of autism. We can’t even agree on what autism is!

And that’s why I avoid debating science; there’s simply not enough to debate. Until we know enough to start putting together the pieces, all we can do is talk in broad generalities. That’s why the main comment I make on science is that we need more of it.

I will gladly admit that Ms. Clark may know more than I about the specifics of some studies bearing on a particular model of autism. But just as I believe ASD is too complex to be explained by an explanation that it is merely misdiagnosed mercury poisoning, I likewise believe that neurological studies do not tell the whole story. I cannot and will not debate someone who refuses to acknowledge that autism is about more than what the brain looks like.

It is no secret that I believe we are in the midst of an autism epidemic (something Ms. Clark disagrees with, I know), that the epidemic results from increased exposure to environmental insults in genetically predisposed children, and that it may be possible to reduce or eliminate some of the clinical manifestations of ASD by various protocols. I don’t claim to be an expert in any of this. I am only a parent trying to make sense of it all.

49 Comments:

Anonymous Anonymous said...

Mr Rankin:

The "I'm only a parent" lament has grown stale and tiresome.

You have an ethical responsiblity as a blogger, whose blog IS read by people you are NOT on a first-name basis with, to try to inject some truth into your "scientific" commentary and not spout the same old junk science the Mercury Mafia uses and misuses.

You are an attorney who has a way with words -- you are not some poor, naive "parent".

Have you looked on the autism diva blog to see what the researchers whose cites were misused by Generation Rescue have to say?

11/26/05, 4:08 PM  
Blogger Wade Rankin said...

Dear "anonymous,"

1. Being a parent is not a "lament." It is a joy I give thanks for every day. I proudly wear the title "parent" as a badge of distinction.

2. I don't believe I've ever claimed that I'm "naive." If I was naive, my opinion truly would be worthless. But thanks for the compliment about having a way with words.

3. While it is somewhat off-topic, I will tell you, yes, I looked at your blog and saw the letter from the one group of researchers who were worried about being associated with Generation Rescue. I was especially impressed with the following paragraph from the letter to the New York Times:

"Autism is an extraordinarily complex condition likely arising from a number of distinct causal pathways each probably comprising multiple steps. We do support continued research of mercury exposure and neurodevelopment - particularly work focused on identifying those more highly susceptible to mercury. However, if mercury’s potential role in autism is overemphasized other promising lines of research may be jeopardized."

In other words, autism is a complex problem, and mercury is but one piece of the puzzle. That sounds an awful lot like what I have been saying (although I certainly believe that mercury is a pretty big piece of that puzzle).

11/26/05, 8:42 PM  
Blogger Kristina Chew said...

Even when you're getting slings and arrows thrown at you, you always keep the discussion civil and courteous. And this parent for one knows you're making a real contribution to helping us all think sensibly and thoughtfully about issues very close to our hearts.

11/26/05, 9:18 PM  
Blogger Eileen said...

I agree with Kristina's comment. We ARE all parents trying to make sense of it all together. Your writing has always been respectful and I understand your intentions are for us to all learn from one another.

11/27/05, 6:27 AM  
Anonymous Michelle Dawson said...

It isn't respectful--or courteous or civil--to disseminate false information about a group of people.

One of the most effective ways to harm people is to comprehensively spread false information about them. This very nearly guarantees they will have poor outcomes. They will suffer, have a hard time, and fail. They are likely to be endangered.

But Mr Rankin hasn't only spread false information about autistics and amply endorsed others who do the same. He has also, as have many who he endorses, routinely accused numerous clinicians (including those I work for) of gross negligence in misdiagnosing mercury poisoning as autism.

I doubt Mr Rankin would consider me courteous, civil, or respectful if I routinely spread false information about his nature (the complex puzzle of the Rankins) and the nature of everyone I judged to resemble him. And would we oblige Mr Rankin to respect people and organizations whose knowledge of law is as meager and biased as Mr Rankin's knowledge of autism, should they routinely and publicly accuse him of gross negligence in carrying out his professional duties.

And I'm not impressed by Mr Rankin's excuse, which in effect is, he can be as irresponsible as he chooses, because he can justify this with his belief that his irresponsiblity is unlikely to harm anyone.

Nice example to set. As I've written somewhere else, ethics have never really caught on in autism.

11/27/05, 3:36 PM  
Anonymous Anonymous said...

Dear Mr Rankin:

In re: your #1 --

It's my interpretation that you are using your way with words in attempts to misquote me. I referred to the "I'm ONLY a parent" lament (sometimes phrased as "I'm JUST a parent.") This is used in attempts to excuse/justify anything the writer may have said that could be incorrect; not scientific; trying to make a belief be a statement of fact; etc.

You did this at the close of your blog post entitled: "MS CLARK". Your statement reads:

"I am only a parent trying to make sense of it all."

I did not state in any way, shape or form that being "a parent" is a "lament".

In re: your # 3 --

I had to read this several times.

You stated: "I will tell you, yes, I looked at your blog...."

I did not quite understand this as I did not know to what blog you referred. I can only surmise you think I am Autism Diva. Is that what you meant? Please correct me if that is not what you meant, as I am actually confused.

Furthermore, I notice your quote-mining from the letter the researchers wrote in reply to Gen Rescue's attempt to legitimize its motto, and I paraphrase: "All autism is mercury poisoning."

Here's what the researchers, whose citations were misused, really had to say:

"... we do not believe there is a proven connection between mercury and autism."

"... if mercury’s potential role in autism is overemphasized other promising lines of research may be jeopardized."

"... we believe GenerationRescue’s advertisement. . . may actually mislead the public into thinking that the mercury-autism hypothesis has stronger support in the scientific literature than it actually does."

These are really important statements. They are especially important to me, as I have a child on the spectrum, who is not "mercury poisoned" and I am greatly interested in valid research being done in certain areas of autism, including neuroimmunology and neuroendocrinology.

As an aside: I really enjoy the blog "My Son Has Autism". I find Christina Chew to be an extraordinary writer. I wonder if Mr Handley is a reader of her blog? It would be most refreshing if he were, but his statement: "My role models are those parents with RECOVERED children", leaves me to rather doubt it.

I don't know if either Ms Chew or Eileen are aware that my knowledge of you comes only as your being a supporter of Mr Handley, whom you defend on various other blogs. I am sorry if they see acrimony towards you, but I feel an enormously great need to protect my own child from Mr Handley's attempt to "save", "rescue" or "fight" for him/her.

_____

- "Fight" quote:

http://adventuresinautism.blogspot.com/2005/11/orac-gets-punked.html

- paraphrashing of "motto":

"Generation Rescue believes that childhood neurological disorders such as autism, Asperger's, ADHD/ADD, speech delay, sensory integration disorder, and many other developmental delays are all misdiagnoses for mercury poisoning."

http://www.generationrescue.org/index2.html

-- quotes from researchers whose citations were misused:

http://autismdiva.blogspot.com/2005/11/general-confusion-and-nyt.html

11/27/05, 4:04 PM  
Blogger Wade Rankin said...

Ms. Dawson:

You state that I have “routinely accused numerous clinicians (including those [you] work for) of gross negligence in misdiagnosing mercury poisoning as autism.” Could you please give me an example of when I might have made such an accusation. I do not recall accusing any clinician of gross negligence, and I certainly would not make that accusation for misdiagnosing mercury poisoning as autism because I do not believe in such a misdiagnosis. The one disagreement I have with Generation Rescue is that I believe autism is autism. Although I believe mercury poisoning can, in whole or in part, trigger autism in certain children (and I certainly believe thimerosal is largely responsible for the increase in ASD rates in the last decade or so), I do not believe that mercury is the only possible trigger. Again, I would greatly appreciate your referring me to any statement I have made that can be interpreted in such a way that an accusation of gross negligence can be inferred. I take such things VERY seriously, and I would want the opportunity to clear things up.

“Anonymous:”

Yes, I did use the term “your blog” as I had reason to believe you were Ms. Clark. If I am wrong, I apologize, but I can’t help but notice that you did not say I was wrong in that belief.

I am in complete agreement with you about one thing: Kristina Chew is an extraordinary writer. I consider reading her blog, and Eileen’s as well, to be important parts of every day.

If you know me only by my being a supporter of J.B. Handley, then I can only say that you do not know me very well at all. In the almost four months that I have been doing this blog, and the month or so before that in which I posted comments at other sites, I could count my mentions of J.B. on one hand of my late grandfather who was missing a digit or two. If you are referring to the fact that I have a link to Generation Rescue’s site on my blog, I would point out that I also have links to Kevin Leitch’s and Kathleen Seidel’s sites. My inclusion of any of those links does not imply that I agree with every word they have ever written or said. But that’s a subject for a complete post, which I will try to write in the next couple of days.

11/27/05, 9:42 PM  
Anonymous Ian Parker said...

Wade, don't change a thing (other than to add more). And in my opinion you are not a heretic.

As a non-chelating 'bio-med' parent, I'm getting quite concerned about the disintegrating tone of the shouting match (calling it a debate is too charitable) between the extreme elements on 'both' sides, and value your efforts to keep the communications both open and civil. This is important, as it potentially affects key influencers and from there public opinion, the willingness to fund research, and the willingness of researchers to work in this area, and I worry that the tone is having a negative effect on the amount and quality of autism research.

The extremist 'ALL-autism-is-mercury-poisoning' group does not speak for all bio-meds (although it gets labeled by opponents as such). I would suggest that their premise is refuted by the facts that a) autism and other ASDs existed prior to vaccinations, b) not all ASD kids or their parents have had an exposure to mercury, c) 165 of 166 in the same environment do not get the diagnosis, (suggesting at a minimum a different level of vulnerability / susceptibility), and d) the odds of the next child in an ASD family having ASD is 1 in 20, not 1 in 166. The latter point would suggest either that autism is contagious (obviously false), or that there is at least an underlying genetic susceptibility.

Also, while it is probably reasonable to suggest that nearly all DAN practitioners and bio-med proponents would support a theory of environmental damage (including -potentially but not limited to - vaccines and/or mercury) contributing to autism, not all are advocates of chelation. One of our DAN practitioners is against it, and another is reluctant. My understanding is that the DAN protocol recommends a series of other interventions prior to considering chelation. The point I'm trying to make is that the bio-med label includes more than just the autism = mercury group. It is getting a little tiresome listening to many reduce 'bio-med' to this simple equation.

On the other side, to argue that all autism is genetic, and/or naturally occurring, and/or should be accepted rather than treated also has a few vulnerabilities. While not everyone agrees with the 1 in 166 number, it is not that controversial to state that there has been a significant increase in the number of cases of ASD in the last 50 years, accelerating in the late 20th century. If you accept that rates of autism are increasing then there must be non-genetic causes at play in addition to any underlying natural rate of autism. The gene pool doesn't change that fast. And if these non-genetic factors (be they mercury, environmental pollutants, or other) are contributing to a rise in autism then treating and/or eliminating them would presumably not be violating someone’s natural genetic expression?

I'd suggest a weakness in the 'autism is just another genetically based way of thinking, not a disease' viewpoint is that REGARDLESS of how advantageous a genetic expression is to the individual, genes require reproduction to make it into the next generation. Without reproducing at the same rate as the general population, any genetic variation will eventually disappear. While there are obviously autistics who have children, evidence would suggest that reproduction is not occurring at a rate required to maintain the autistic population.

Conversely, if autism is a genetic disease (or collection of diseases with similar symptoms), or mis-expression or 'commonly occurring' mutation of genes that do get passed on, then it would continue to occur at a relatively constant rate over time. A similar example may be sickle cell anemia, which may be a mutation linked to a gene giving a selective advantage against malaria. (Given that many autistics are reported to be visual thinkers and learners, perhaps autism is related to a propensity to visual thinking styles? Or maybe visual thinking is an adaptive measure. Just a thought).

Genes are basically a mechanism to manufacture proteins. If autism is a range of mutations causing changes in the rate of manufacture of proteins then it may be theoretically possible to treat it. This does not automatically mean that we should treat it, but it does suggest that treatment is also not automatically a violation of one's right to 'be autistic'. There are currently a lot of unproven treatments out there, and no one should be demonized for not wanting to use them on themselves or their children. But if autism is a disease, one should also not be automatically demonized for following a course of intervention that may ameliorate it or its comorbidities.

In addition, the failure to ‘cure’ does not automatically imply that the suggested cause is incorrect. My (admittedly limited) reading of brain research suggests that the brain is an amazingly plastic and adaptable organ (which may be a source of some of the intellectual gifts that some autistics possess), but that so far this plasticity and adaptability has not proven to be unlimited. The fact that chelation has not been proven (as distinct from anecdotally/observationally suggested) to ‘cure’ does not mean that mercury is not an environmental trigger.

I totally support some of the goals of the neuro-diversity movement. Regardless of whether autism is a disease or natural condition, autistics have a right to acceptance, assistance to lead a full and secure life, and the same basic rights as everyone else. On this the movement has my full support. But the neuro-diversity movement does not speak for all autistics, just as GR does not speak for all bio-meds. Our primary DAN practitioner has a lot of adult autistic clients. While 'cure' may not be an option or a goal, they are willingly being treated, having sought out our practitioner. When I asked about this, mentioning the views of the neuro-diversity movement, my practitioner’s reply was that the goals of many of the adults are to 'get out of the box that autism has put them in'. Just as GR does not speak for all bio-meds, the neuro-diversity movement does not speak for all adult autistics. Some on both sides need to realize this.

11/27/05, 10:46 PM  
Anonymous Anonymous said...

Hello:

Anon here again. I must admit I agree with several of the things Ian Parker has stated.

Mr Rankin, I have no idea why you had "reason" to believe that I am Ms Clark. I honestly thought your # 3 contained a typo and did not realize that I needed to state: I am not Ms Clark, Camille or Autism Diva.

I can honestly say I know her as well as I know you. All I know of you is your posts on a few other blogs where you have supported Mr Handley and your posts on your own blog against Paul Offit(sp).

I find it a little disconcerting that you were so convinced I was Ms Clark, especially when I posted about my interest in neuroimmunology and neuroendocrinology. I am just perplexed -- that's all.

I have grown weary on these blogs with the division being the mercury group vs. the "ND" group. Shouldn't everyone be "ND"? Isn't that sort of a basic civil right?

I am of the opinion the mercury-causation theory has gotten in the way of getting real funding into autism research. The Vargas study has come very close to what I see as getting more to the issues of what is going on in ASD, but Handley took that and used it for his gain -- much to the chagrin of those researchers.

I believe you stated it was "one group of researchers" who were "worried" over "being associated with Generation Rescue". It was not just one group: Those who expressed their dismay at Handley's actions include researchers at JHU, Mass Gen, Kennedy-Kreiger and U of Mich.

On the issue of the term bio-medical, I have argued in the past it is being misused when many really mean "alternative medicine." I feel I can really no longer use the term because it is now taken as code for chelation. There are other biomedical oriented treatments for the co-morbidities that occur among some with ASD. Some seem to think it's either chelation or no treatment at all.

I am all for treatment of the co-morbidities and have followed a medical approach since the late 90s. It is a mixture of things, but at its core is the treatment of immune dysregulation. The closest thing I can point to you by way of reference would be this:

www.nidsnnyclinic.org

However, please understand I am NOT any of the individuals involved in this clinic (so no one please bother them) ... it's just the closest reference I can give you as to what I can say has worked in our case.

I am very sorry if you feel I have wrongly categorized you, but perhaps Prometheus said it best, and I quote but a snippet:

"... the rather transparent attempt to put words in people's mouths - to make it appear that they agreed with something they did not - will not reflect well on Generation Rescue or on other autism organisations. They will all get a splash of tar from the brush that coats Generation Rescue."

I am very concerned about that "tar splash" and how it affects the future of my child.

Again, Mr Rankin, my apologies if I have wrongly viewed you as a staunch proponent of Handley and GR.

Just sign me,
Not In Any Camp

~Peace~

11/27/05, 11:51 PM  
Anonymous Michelle Dawson said...

Mr Rankin,

You unshakeably believe that a great deal of autism (enough to cause an "epidemic") results from mercury poisoning.

Therefore, any clinician who diagnoses more than a few autistic children, but fails to notice that some or most of these children are in fact mercury poisoned, is being grossly negligent.

Mercury poisoning is very serious. Any medical practitioner who repeatedly overlooks this is obviously being as grossly negligent as a medical practioner failing repeatedly to diagnose other serious and harmful kinds of poisoning.

The group I work with diagnoses more than 100 autistics every year. According to you, many or most of these autistics are also mercury poisoned. So you are claiming that the clincian in charge is being grossly negligent. He is failing to notice obvious signs of mercury poisoning.

Diagnosing autism is not a wild-guessing kind of thing. A clinician has to be expert in what autism is not, and be sensitive to the slightest anomalies. Why? Because if you are not careful, you will miss brain lesions, very rare metabolic disorders, etc. Missing anomalies has serious consequences. And you have to sort autism out from the other 750 named neurodevelopmental disorders.

Your own certainties about autism require that clincians who can spot very subtle signs that something in addition to or other than autism is present at the same time routinely fail to diagnose mercury poisoning. Whether you believe autism is mercury poisoning, or autism is caused by mercury poisoning, doesn't alter the accusation you are making if you are right.

Many of the newly minted autism "experts" have repeatedly made this accusation publicly (e.g., Craig Westover, apart from Generation Rescue and many others too numerous to list).

Either you are serious about your position, or you aren't. If you are serious, you are saying that clinicians are, by any standard, being grossly negligent. You cannot be serious about what you claim and not de facto be making this accusation.

11/28/05, 1:34 AM  
Anonymous Michelle Dawson said...

A few comments re what Mr Parker wrote.

The autism research community rejects any notion that there has been a secular (versus an apparent) increase in numbers of autistic people. This is not even a "controversy". All the evidence points away from an "epidemic". People, including those running funding bodies, are free to ignore the evidence, and they irresponsibly do. But that isn't "controversy", that's irresponsibility.

I disagree with how Mr Parker frames this "argument". I don't belong to any "movement", but I side with concepts like "accuracy" and "ethics" and "respect".

I spent years trying to find someone who would fix me or train me to be normal. This resulted from my having been given huge amounts of false information about autism by people and organizations claiming expertise for themselves.

Interacting with these people and organizations made me gullible and easy to push around. Experiencing intolerance and denigration as a daily reality didn't help. Nor did knowing that the groups claiming to represent me supported and enacted this intolerance and denigration. I figured, for a long time, that autistics must be the worst people in the world. I wrote quite a lot about not being human, because that's what I was told about myself, and that's how I was treated.

The only "treatment" for this was to inform myself from sources that were not pushing agendas or selling treatments, and to acquire critical thinking as a habit. Any professional who had set out to "treat" me based on my, and/or their, ignorance about what autism is (swell, we're not empty shells any more, we're in boxes), would have violated all kinds of basic ethical and scientific principles. But we don't care about stuff like that in autism.

11/28/05, 2:32 AM  
Blogger Wade Rankin said...

Ian:

It’s always great to see a comment from you. Yours is a voice of reason that is badly needed in these discussions. When are you going to break down and start blogging?

Anonymous (a/k/a “Not in Any Camp”):

I stand corrected on your “identity,” and can only assume that you are not insulted by my error. Again, I apologize for making that mistake; I should know better than to jump to conclusions.

Your latest comment certainly helps to clarify your position, and I am happy to say that we are not as far apart in our positions as might have appeared at first blush. As Mr. Parker and you both point out, a biomedical approach (and I will continue to use that term despite your misgivings) may mean different things to different people. The primary difference between us, if I understand you correctly, involves the place of chelation. You seem to feel that it is never warranted; I feel it may be helpful in many cases; and, of course, there are those people who believe it is necessary for all autistics.

The real question is how do we respond to ASD (and I use the word “respond” carefully). We may disagree on what a biomedical approach includes (I see it in far broader terms than just “chelation” although chelation may be an appropriate element in individual cases), and we may also disagree on whether we are treating comorbidities or conditions that cause the clinical indications by which a diagnosis is made. But we seem to agree that some response is required, and we certainly agree that the treatment of “immune dysregulation” is a key to the process.

I continue to believe that any response to ASD can only be formulated on an individual basis by either the person with autism or by his/her parents acting on a child’s behalf. Formulating that response must be a deliberate process, taking into account all of the circumstances and available information. One reason I do not discuss the particulars of any protocols we use with our son is because I do not want to present the decisions my wife and I made, and continue to make, as a model. Every well-reasoned decision is worthy of respect, and your decisions certainly seem well-reasoned.

On another point you raised, my reference to the “one group” of researchers, I did not mean to imply that the group was limited to one study, but rather that they acted as a group in drafting and signing the letter. That group obviously does not comprise all of the researchers mentioned in the GR ad. As I tried to say before, I understand that this group does not want there to be any implication that they think the connection has been conclusively established; there is obviously far too much more to learn before any such statement can be made.

I agree with you that other areas of research must also be explored, as there are many pieces to this puzzle. But I would also argue that the mercury connection is promising enough that further research in that area may help to not only prove or disprove that hypothesis, but can also help define the other areas that need further exploration.

As I mentioned before, I need to write a post explaining just what my position is with regard to Generation Rescue. Normally I would not feel a need to do so, but recent events seem to be creating such an unnecessary polarization, that some comment is needed. With the caveat that I would like to more fully explain my position in greater detail (something I tend to overdo), I want to make sure I do not mislead you. My position in a nutshell is this. I do not agree with GR’s single-minded focus on the mercury issue, and I do not always agree with Mr. Handley’s style or tactics. I nevertheless am in substantial agreement with most of GR’s goals, and I think their site adds to the exploration of the issue and includes a lot of good information (apart from the “misdiagnosis” mantra).

Thank you so much for making the effort to add another comment. I now feel I understand your points much better, and I hope I’m doing a better job of explaining my own views.

And finally to you, Ms. Dawson:

You seem to live in such a black-and-white world. You, of all people, should know, the issues of ASD are simply not that simple.

I would never make an accusation of “gross negligence” against any clinician who exercises professional judgment in the face of what he/she believes to be true. I can only assume that the professionals in the group you work with are aware of the hypothesized link, and reject it as being unproven. Whether they are being short-sighted or not is not something I could begin to address without knowing how far they have looked into the question.

My assumption of any clinician is that they do a complete and thorough job of diagnosing and treating their patients based on their understanding of the problem. To label such conduct as “gross negligence,” a term that implies a complete and utter disregard for someone else’s well being, would be plain wrong. In fact, it would be almost as wrong as implying that someone has made a false allegation when, in fact, that person has only expressed a broad opinion on a particular subject.

Your statement that I have “certainties” about the relationship of environmental factors and the triggering of ASD shows that you have not bothered to read very much of what I actually wrote, despite your having left many comments in the past. I have beliefs based on what I have learned, but not certainties. The state of the emerging science right now is such that nobody -- on any side of the debate -- should proclaim a certainty.

You say that I am either serious about my position or I am not. I am serious about my position. But you fail to understand my position. Once again, I believe that an emerging body of evidence supports the hypothesis that environmental insults may trigger ASD in genetically predisposed children. I believe that the most prevalent environmental insult in the recent past (and possibly now) has been thimerosal in childhood vaccines. I believe that the mercury poisoning resulting from thimerosal exposure can help trigger ASD, and can also impair a child’s immune system (or further impair and already impaired immune system) to the point that other environmental insults (e.g., lead or other heavy-metal exposure, live-virus vaccines) may likewise contribute to the development of ASD. But the key words in my position are “believe” and “emerging science.”

I do not advise anyone to simply take what I am saying as a statement of scientific fact. I do encourage parents, or anyone else interested in the subject, to examine the evidence on all sides of the question for themselves, to learn what they can, and to act accordingly. That hardly seems to be an irresponsible position.

We obviously disagree on many things, but your comments are always welcome, Ms. Dawson. You have an impressive intellect, and you generally conduct yourself in a civilized manner. If you are going to attack me, however, I would appreciate your confining the attack to something I have actually said. I am a big boy, and I can handle the heat.

11/28/05, 10:40 AM  
Anonymous Michelle Dawson said...

Mr Rankin,

I have a mediocre and uneducated brain. I live in the same world you do. I didn't attack you in any way, except that I took your position seriously and explained its consequences.

I was inspired by the many posts where you cling loyally to mercury/autism hypotheses--maybe the blog title also swayed me, and your total loyalty to the indefensible "epidemic", your mercury-laden links section, etc.

For a clinician, failing to identify a rare but known and named metabolic disorder which mimics or accompanies autism (which means, failing to identify that you have an anomaly, and failing to get expertise if you don't have expertise yourself) would be a serious error and could legitimately be called neglect.

Now repeat this error dozens (at least, for one clincian) times a year, year after year, in a situation where the metabolic disorder has become no longer rare, and is present in many or most of the those who show up in your autism clinic.

So far as I can tell, you're arguing that an equivalent misdiagnosis of mercury poisoning is okay. Consider me agog.

Mercury poisoning isn't trivial, and it isn't invisible. It is both a clinical (there are symptoms) and testable diagnosis. But now you take the position that a clincian failing to diagnose mercury poisoning dozens (at least) times a year, year after year, is not being negligent. It's as if you don't take mercury poisoning seriously.

11/28/05, 3:35 PM  
Blogger Moi ;) said...

Ms. Dawson: >>Mercury poisoning is very serious. Any medical practitioner who repeatedly overlooks this is obviously being as grossly negligent as a medical practioner failing repeatedly to diagnose other serious and harmful kinds of poisoning.<<

Well, that's No Duh. Is it any wonder the government, drug companies, and physicians in this country are covering their rear ends? Or don't they do things like that in Canada? Here, it's par for the course - they are not about to admit they did anything wrong, especially not in the numbers being discovered every day... Look at Merck and Vioxx if you need proof.

As for your clinic - Your clinic can diagnose whomever with whatever, and no one is going to sue you until someone can prove that mercury CAN cause autism or at the very least, autistic traits. Using the negligence argument is fairly useless at this point.

Funny though, how my son's pediatrician now lets ME decide whether he injects any more mercury into my son or not (i.e. flu shots, tetanus, etc.). Funny how my son's dentist lets ME make the decision whether he should have a white filling or an amalgam... Funny how that is....because they never used to do that.... Think they know SOMEthing is up?

I don't feel that Wade is spreading false information at all. Wade's opinion most certainly is not hindering autism research. After 13 years of experience trying to figure things out, I have come to the same conclusion, and it wasn't because of anything Wade has written! (Gee, Wade, you been blogging that long?) Funny how Wade doesn't seem to be alone in his opinion, either.

At this point, whether my son has mercury poisoning, or whether TPTB want to call it autism, I really don't care. That's all water under the bridge. If a word gets him services, then that's the word to use. And if that word is autism, that's the way it goes.

If you want to make it your crusade to change the definition, be my guest. Of course, you'd have to prove that autism actually Wasn't able to be caused by mercury, and I think that would be difficult, at best.

***

Wade: >>The real question is how do we respond to ASD (and I use the word “respond” carefully).<<

Wade, my own personal question is not how I/we respond to ASD. (And pardon me, but I'm about to get POed and it's not at you, lol. OH BTW this is also not about Dr. Buttar, I don't know a thing about Dr. Buttar and have no opinion at this point.)

I have never understood why people who can obviously communicate well, especially who are supposedly on the spectrum, why those people would denigrate those of us who seek to enable our kids to Just. Freaking. Live. All because they don't want the word autism associated with mercury poisoning.

Of course, they can't prove that the two AREN'T associated, either. Don't tell them that, though, or we will be the bad guys...and we will be accused of being uncivil, lol.

Back to my question...

What we do we do with all the children-soon-to-be-adults who will never be able to communicate - much less communicate as well as Ms. Dawson? What do we do with all the children-soon-to-be-adults who will never be able to live on their own? (OK, two questions...;)

Seems to me Ms. Dawson is a pretty lucky autistic, to be able to do both. Many of our children who are diagnosed with autism can't, not without intervention on many levels.

Those who have all the answers need to share with those that don't.

We do not chelate but I am not against it, to each their own. I would never tell someone Not to do something that they feel is benefitting their child.

For the record, I am not trying to "change" my son - I am trying to ENABLE him. There is a big difference.

Personally, I think my son enjoys talking. I think he enjoys not having gastric problems. I think he enjoys being able to go to a regular school and do well. I think he enjoys having friends.

I think someday he will enjoy being to live on his own, to have a family and a job, to have a fulfilling life, whatever he chooses to do. I KNOW he would not enjoy living in a cardboard box. I KNOW he would not enjoy communicating with his hands, or through a straw, or however else.

Of course, I could be wrong.... :>*

The damage that has been done to him can NOT be "cured." Do you people REALLY think he'd be better off if I'd just sat around and let him be "neurodiverse"??

He IS freaking "neurodiverse" - but DAMNIT he can read. And he can TALK. Of course, if I'd done what the NDs want, I'd have sat with my thumb up my proverbial hind and let him just be "neurodiverse."

No, THAT is NEGLECT.

****

To Anonymous: People who visit websites leave a trail in the form of their IP. Leaving your name/email makes you credible - You don't want people to think your words are just Junk Comments.... :>*

11/28/05, 5:15 PM  
Blogger Kristina Chew said...

A neuroscientist whose brother has autism put it like this: Of course he respects neurodiversity (he acknowledged his own non-NT-ness); of course he wants to do nothing more than to help his brother and individiuals like him have better lives, and he is able to do this with his research.

His brother had to live in a group home at one point. He would put up a huge fuss at the end of home visits with his family--it turned out that he was being abused at the group home. He is non-verbal and it was long, too long, before the family learned about what was really going on and could move him to a safe place.

The scientist almost burst into tears after telling this, in a public forum. And this story is yet one more reason why, we can all agree to disagree but we all must agree, we've got to make the world safe for autism.

11/28/05, 5:57 PM  
Anonymous Michelle Dawson said...

I didn't mention being sued. I wrote about the kind of positions that are being taken by Mr Rankin and those he supports, and the consequences of these positions. I don't have a clinic and I'm not a clincian. What I wrote applies to any clinic that diagnoses a lot of autistics.

Anyone who wants to prove the mercury/autism hypothesis is free to do what the rest of the research world does. Conduct studies and publish them.

I don't think Mr Rankin will have any effect on autism research. It's actual people who are harmed when false information is spread about us.

I disagree that accuracy and respect are harmful to autistics.

Among the most dangerous and harmful pieces of false information routinely spread about us is that we can't communicate.

All autistics communicate. But when someone decides you can't communicate, this becomes true. Having speech doesn't matter when someone decides that you are too stupid to communicate. Those kinds of decisions have been repeatedly made about me and they certainly harmed and endangered me.

If you want autistics to be in danger all the time, keep saying that some of us can't communicate. I know from a lot of experience that this ensures that the person making decisions about any autistic is then free to decide that this is one of those autistics who can't communicate, speech or no. And this happens all the time.

People who spread the grossly false, anti-scientific, and harmful message that some or all autistics are inherently hopeless, cannot communicate, etc, are the people who make sure that we get hurt.

Deciding that an autistic who is still a child or a young adult cannot communicate and is doomed (will never do this, will never do that) is reprehensible. Most of us have been written off repeatedly throughout our lives.

The more false information is spread about us, the less likely it is that any of us will be safe anywhere, and the less likely it becomes that we will get the assistance we need in order to succeed as autistic people.

Mandatory reading http://www.gettingthetruthout.org/ Don't stop once you start.

11/28/05, 7:18 PM  
Blogger Moi ;) said...

The group I work with diagnoses more than 100 autistics every year. << (other post) >> I don't have a clinic and I'm not a clincian. What I wrote applies to any clinic that diagnoses a lot of autistics. <<

Oh, you Work for them, but it's not "yours." I see.... @@ OH, PLEASE. Don't get into semantics with me. You will not win.

Again - Prove to me the information is false. Prove to me that autism or autistic traits are not caused by mercury poisoning. Have proof that does not include government, drug company, or research supported by the AMA. Those groups are corrupt and untrustworthy.

There are plenty of private agencies and educational foundations/research hospitals that are doing studies looking for the mercury/autism connection. It will happen, it's only a matter of time. Heavy duty research on autism has only really been happening since we activist parents have been advocating for our kids. It's only come to the forefront because of US, only been given funding because of US. We don't control the research. Before that, what did YOU do to enable research to this degree?

>> According to you, many or most of these autistics are also mercury poisoned. So you are claiming that the clincian in charge is being grossly negligent. He is failing to notice obvious signs of mercury poisoning. << (next post) >> I didn't mention being sued. <<


You don't have to. That's implied. Then again, you are in Canada. @@ In this country, you get Sued for negligence. Semantics again.

>> All autistics communicate. But when someone decides you can't communicate, this becomes true. Having speech doesn't matter when someone decides that you are too stupid to communicate. Those kinds of decisions have been repeatedly made about me and they certainly harmed and endangered me.

If you want autistics to be in danger all the time, keep saying that some of us can't communicate. <<


You make absolutely no sense. Who said that I wanted autistics to be in danger? Who said autistics were stupid? Melodrama is good entertainment, but not good for debate with Moi ;). And I'm not even a lawyer, lol.

It takes TWO to communicate. I could stand in front of you, and yell in your face. If you were deaf, and couldn't read lips, or if you spoke another language, we wouldn't be communicating. The other person has to UNDERSTAND what you are saying. THAT is communication. The very first definition for the word Communication is " something that is communicated by or to or between people or groups." Note that it's PLURAL.

So - tell me - How do you plan to teach the billions of people in the world how to communicate with the hundreds of different ways autistics have of communicating? This is NOT a rhetorical question. How? I mean, you're the self-proclaimed expert here, right?

I teach instrumental music. There ARE no words in instrumental music. So if ANYONE here knows about communicating without words, it's ME. Of course, since you know so much about communicating without words, you should be able to tell me what story Mozart's Flute Concerto in G is telling after one listen. (No, you can't Google it, it's not there. Heh.)

Nobody "decided" my son "couldn't communicate." I am sorry, but going "EEEEEEEEEAAAAAAAAAAAAAAAAA" indiscriminately is NOT communicating. And yeah, it sounded like Elaine's imitation of the fax machine on Seinfeld. Ask a cop or fireman what EEEEEEEEAAAAAAAAAAAAA means. See if they can tell you. If anything would have put him in danger, EEEEEAAAAAAAAAA would have been it.

YOUR way would PUT him in danger. I don't see YOU doing anything to change that. And BTW, a friend of mine has come up with the method that the PA state police now use with non-verbal autistics.

It is a real shame, if it bothers you that I was successful in teaching him, or that he loves to talk. If it bothers you that he is actually ABLE to use his brain in a neurotypical manner in any way, then you have a real chip on your shoulder. Not only that, YOU are a BIGOT, if you think having any neurotypical qualities is bad! Do NOT use your personal experience to justify why ALL autistics should feel the same way as you do. To use your own propaganda (from that website), Don't speak for MY kid.

AND - are you actually saying that any autistic child who can't talk, should NEVER talk because that isn't the way autistics SHOULD communicate? That they HAVE to be totally different BECAUSE they are autistic? Are YOU giving THEM the choice? Doesn't sound like it!

For those who can never be verbal, of course there are other ways, and should be more ways, of enabling them to communicate. I never said there shouldn't. But you have absolutely no right to tell anyone that talking or using language should not be an option! Aren't you writing in English? You ought to get on your knees and thank whoever you want that you CAN do that. That you ARE able to make people all over the world understand what's in your head.

But you are not grateful for that. You are too hung up on what other people thought of you before, that you were "written off".... Bag that, get over yourself, get on with your life. You want respect? HELP other people, YOU teach them, instead of TELLING us what to do with and for our own kids.

You have yet to give us any legitimate information disproving anything, you have yet to answer any of our questions. You see things only one way, which is exactly what you accuse US of doing. That's pretty hypocritical, don't you think? Even a tad bit phony. You may be autistic, but that doesn't excuse bad behavior and poor attitude. If you are going to come on our websites and our blogs, and basically accuse us of being horrible people, of endangering our own kids, you'd better be able to back it up.

BTW Your friends at autistics.org (owners of that site, thanks to http://whois.net) might want to reconsider the name before www.truthout.org comes after them. Talk about lawsuits from two directions......

11/28/05, 10:50 PM  
Anonymous Michelle Dawson said...

The previous post is proof that once people decide that autistics can't communicate (and will never do this, never do that, and are doomed), they become unable to hear us, much less respect us.

Instead, once they have ignored and disrespected us, they will claim to be the authorities about what we've said, what we've done, what we've written, what we think, what we're worth, where we belong, etc. And they will tell us what to do, what decisions we must make, how we should conduct ourselves, how lousy we are, etc. And they will mock and ridicule us too.

11/29/05, 6:03 AM  
Blogger Moi ;) said...

No one is mocking or ridiculing any group of people here. That you say it's happening doesn't make it so. Show me where I did either.

You are, plain and simple, a bigot. And, BTW, you have to Earn respect. Answering my questions would have been a good start on your part.

You've proven My point by your obstinance.

11/29/05, 7:37 AM  
Anonymous Michelle Dawson said...

I forgot to add that I've never stopped being amazed when some non-autistics are (obviously) furious that there are people out there (autistics, parents, siblings, professionals, etc) trying to argue for the repectful, accurate, scientifically and ethically sound, etc, portrayal and treatment of autistics.

My (real) view is that the standards, ethics, etc, which have served to protect all other human beings should be applied to autistics. This is the point of everything I've posted chez Mr Rankin, though since I've been told (in so many words) I'm not welcome, I won't be adding any more.

11/29/05, 7:50 AM  
Blogger Wade Rankin said...

-> "... since I've been told (in so many words) I'm not welcome, I won't be adding any more."

Ms. Dawson:

As I have mentioned on numerous occasions, you are always welcome to post any opinions you wish. I have never censored or moderated anything you have posted.

I am well aware that autism does not necessarily mean a complete inability to communicate. Through this blog, I have been able to communicate with quite a few adults on the spectrum; I have enjoyed that communication; and I have found a deep respect for the folks I have communicated with. The concept of communication, however, implies more than the ability to state one's thoughts. Meaningful communication also involves the ability AND THE WILLINGNESS to listen as others state their thoughts. You need not agree with everything -- or even anything -- someone else says, just listen and consider.

I have a true respect for your intellect and your passion. I am in sympathy with your desire to change the world so that autistic adults are looked upon as being worthy individuals with unique talents. That we disagree on many other things does not diminish that respect.

I will continue to welcome your comments. But keep in mind that the passion of others runs as deep as yours. The nature of an open forum is such that people will often disagree.

11/29/05, 9:33 AM  
Anonymous Ian Parker said...

A couple of comments:

Michelle:

1. I for one would be saddened if you stopped posting comments to this site. I may not agree with everything you write, but you have as much right as any of us to write it. You have an informed POV that adds to the discussion, and it would be missed if absent.

2. I would suggest that it is possible to decouple respect for autistics and the rights of autistics from belief that 'autism is not a treatable disease but an label for a collection of diverse ways of thinking'. My respect for you, your rights, and your freedom to excercise them is not conditional on my agreeing with your position on autism. One can respectfully agree to disagree.

Anonymous (Not In Any Camp)

I checked out the link you suggested, and if much of the content of the site matches your way of thinking and experience re: ASD then a) I'm very much in agreement with your approach to this issue and b) would be interested in discussing this further. If you are also interested then there are ways of communicating while still protecting your anonymity. Having said that, I'd also suggest that you can adopt a unique handle while still remaining anonymous, if you choose. Why not go with 'Not In Any Camp'?

Wade

Thanks for the kind words.

11/29/05, 10:33 AM  
Blogger Moi ;) said...

Meaningful communication also involves the ability AND THE WILLINGNESS to listen as others state their thoughts. You need not agree with everything -- or even anything -- someone else says, just listen and consider.

Wade, Willingness...yeah, that's the ticket....lol....

If she REALLY wanted to hear anyone else's side of it, she would have. She is not an idiot - she just didn't want to. So much for standards and ethics.

11/29/05, 12:41 PM  
Blogger mommyguilt said...

Hi. I found you through Moi's blog and felt compelled to pop in. I'm really frustrated with the fact that everyone is so hung up on WHAT causes autism than where we can go from here. Whether mercury, genetics, whatever, there is always going to be a "what if" factor...

With Mercury, it will always be, "How could I have exposed my child to this?" and "What if I choose not to vaccinate? What will I be exposing my child to if I choose that route?"

With genetics people will question if they should continue to have children, people may begin demanding a test during pregnancy to see if there is a autistic gene within the baby's DNA - as done with Down's....

We are all parents who are touched in some way by some form of ASD. Let's work together on figuring out how we can get the best we can for those we love. Absolutely continue to find a reason...a solution to this puzzle. There may be many causes of autism, there may be one. Until we know for sure, let's educate all of those who don't "get" our children, who don't understand. Let's work together for THEM. Pursue the genetic theory, follow the mercury theory. Let's find a reason, but let's stop this ridiculous bickering. It's our children who will ultimately suffer and I KNOW that mercury or genetics,chelation or GFCF, ABA or RDI none of us want that.

Wade, I think you have a wonderful posting here. The amount of comments and the content of all tells the true tale of what a HUGE issue this is. You, like the rest of us, are a parent who wants to make sure that our child receives everything possible and that everyone who comes in contact with your child is educated and "gets" it. Kudos to you for standing up and speaking your mind - whether or not people agree.

11/29/05, 2:14 PM  
Blogger Wade Rankin said...

Thanks for stopping by MommyG. The primary reason to discuss the causes of autism is to learn how to effectively respond. Unfortunately, too many people are so fixated on there being a single cause (and that applies to both the mercury and genetics proponents) when I really think we’re going to find out that there are multiple causation scenarios. Then there are the other arguments about whether there is an “epidemic” and whether it is moral to seek a “cure.”

I’m not too worried about there being disagreement on these points so much as I mind the tone of the discussion. Everyone is so busy trying to tally debate points that there is no consideration of “the other side’s” thoughts. The only way to learn is to listen, and we all have a lot to learn. This post started because someone felt she knew what I believed and stood for based on misperceptions. And her biggest misperception was a belief that I automatically dismissed the validity of a particular model of autism because someone else believed it to be false.

I’ve heard it said of both the ND and biomed “communities” (and that word is used rather loosely) that getting the members of either group to agree on anything is like herding cats. It’s hard enough to find a consensus within the groups much less across the lines. Add in the group of people with no real connection to autism other than a scientific, cultural, or political interest in the issue, and you wind up with a real free for all. Despite what some people think, I’m not really here to debate or argue. I’d rather have some calm discussions and maybe learn something.

11/29/05, 8:13 PM  
Blogger Anne said...

Responding late to your post, Wade, I think you are overlooking the cumulative effect of what people say about autism. Sure, you're just one guy with a blog. But you add your voice to others, and you do have credibility as an educated and intelligent person.

Most people know next to nothing about autism because they don't have to know about it, or because they should know about it but they don't have the time or the inclination to study it deeply. The little they do know is gleaned from whatever passes by them in newspapers and magazines, on TV, and on the internet. This is why media organizations like Generation Rescue take out ads in the New York Times, and why an organized group of parents waged a campaign to get lots of media attention for David Kirby's book, Evidence of Harm. It is why the MIND institute commissioned a bunch of print and video ads that, thankfully, never ran as far as I know.

It is why many of us, including those of us who don't blog, write letters in response to articles in newspapers and magazines, to try to balance out the picture a little bit in the minds of readers who may not care that much, but whose lack of understanding could become important.

Many of the people whose casually gained understanding about autism are people who have to make decisions about hiring autistic people or renting apartments to them or admitting them to colleges. They are social workers who deal with family crises that might occasionally involve autistic people, and judges and mediators who deal with domestic relations cases that might occasionally involve autistic family members. They are general education teachers who occasionally have autistic kids included in their classrooms. They are just regular people who might be considering being a friend or spouse of an autistic person. They are legislators who make public policy about dealing with autistic people.

The cumulative effect of media portrayals of autism influences how autistic people are perceived by others and treated in their daily lives. Maybe no single one of us is so influential that people would look specifically to us for advice, but that doesn't let us off the hook and allow us to take a cavalier approach to what we say. All the misinformation and unwarranted negativity adds up to something that doesn't help our kids in the long run. I think we have a responsibility to at least try to be accurate.

11/29/05, 11:11 PM  
Blogger Wade Rankin said...

Welcome back, Anne. I agree with much of what you say. I certainly try not to take a cavalier approach to what I say and I do try to be accurate. Some may disagree with something I say or believe it to be inaccurate, but an intelligent comment from someone like you makes it clear that my opinion is not the only way of looking at the problem. The point is that making blanket statements about people who may share some common goals but not the same opinions is wrong. I don't judge Kev by Kathleen Seidel's words, and I don't judge Kathleen by Michelle Dawson's posts. The blanket statements Ms. Clark made at Kev's blog and Ms. Dawson made here are inaccurate and show the same cavalier approach that you find wrong.

11/30/05, 6:36 AM  
Blogger mommyguilt said...

Thanks, Wade, for the welcome. You are right, as long as we all keep in mind the important issue at hand and not which theory is right or wrong, we can keep moving forward.

Once everyone stops and listens to each other without bias and with an open mind, we will all begin to make progress. I liken this to politics where each side is so bent on their view being 100% correct and the other being 100% incorrect that there is no room for listening and finding out, "hey, we might actually agree on something."

Keep posts like this coming. Truthfully, it's great to know that so many people do feel strongly about autism, genuinely care about finding out what is behind ASD and what the future can hold. It would be nice if we could all find some common ground and listen to each other. I think this is a great jumping off point, Wade. Keep 'em coming.

Thanks for the link, btw.

11/30/05, 8:53 AM  
Blogger Moi ;) said...

The primary reason to discuss the causes of autism is to learn how to effectively respond. Unfortunately, too many people are so fixated on there being a single cause (and that applies to both the mercury and genetics proponents) when I really think we’re going to find out that there are multiple causation scenarios. Then there are the other arguments about whether there is an “epidemic” and whether it is moral to seek a “cure.”

I’m not too worried about there being disagreement on these points so much as I mind the tone of the discussion. Everyone is so busy trying to tally debate points that there is no consideration of “the other side’s” thoughts.


Geez, if I was ever able to get into a debate to begin with, I'd faint, lol. BTW I do agree there are probably multiple causes, as well as multiple diagnoses. Meaning that the autistic traits may be only that in name and actually symptomatic of something else entirely.

Personally, I have not taken a total approach of ANY sort with Bug, yet I am lumped into the biomed category by the NDers, because I try to understand and stand up for, or find the good, in EVERY approach. The parents in the "biomed" movement are very accepting of other opinions, they do not bash opinions which don't gel with what they say. Yet the ones in the ND movement are not, they are intolerant.

I do agree with anonymous (I think it was she) who said something to the effect that biomed = chelation these days. Talk about Stupid. Let's just throw all the research on diet and health out with the bath water on that one, ya know?

11/30/05, 11:35 AM  
Blogger Kev said...

Moi said:

"The parents in the "biomed" movement are very accepting of other opinions, they do not bash opinions which don't gel with what they say. Yet the ones in the ND movement are not, they are intolerant."

John Best Jr, Generation Rescue Rescue Angel said:

"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….. 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."

Link.

Moi (not sure if you or your child is Thomas) - you are deluding yourself if you feel that one side is more accepting than another.

For me, this isn't about being 100% right but trying to bring a bit of realism in. Its simlpy not good enough for very powerful organisations to claim that all autism is one thing or another. We cannot put our hands over our eyes and pretend that a lot of people are not using very very powerful treatments on their children that have never been safety tested.

Moi also said:

At this point, whether my son has mercury poisoning, or whether TPTB want to call it autism, I really don't care. That's all water under the bridge. If a word gets him services, then that's the word to use. And if that word is autism, that's the way it goes.

Sadly, thats what autism seems to be reduced to - something to get services. Call me old fashioned but I prefer a medical diagnosis to be rooted in fact. I'm not blaming you Moi but unfortunately, progressing with autism is not helped by such slapdash reporting. It really does matter in a variety of ways what we call something and how we treat it.

"If you want to make it your crusade to change the definition, be my guest. Of course, you'd have to prove that autism actually Wasn't able to be caused by mercury, and I think that would be difficult, at best."

Change the definiton? You're arguing an impossibility Moi. The definition of autism is freely available and doesn't mention Mercury anywhere. You're asking people to prove a negative which is impossible (prove to me God doesn't exist). No, I'm sorry. You seem to be the one challenging the current paradigm Moi - its up to you to back it up.

Just to reiterate - getting along irrespective of beliefs is vital in my opinion. The battle for appropriate education and services will be an ongoing one but that does not mean we should pretend this debate is not important. Its vital.

12/2/05, 1:59 AM  
Blogger Wade Rankin said...

In my post, I said: “We can’t even agree on what autism is!” I can’t help but notice that most of the definitions of autism found at the link Kev provides above refer to autism as a “disorder.” I wonder how many of the people who leave comments at Kev’s blog would agree with that part of the definition.

12/2/05, 9:51 PM  
Blogger Bartholomew Cubbins said...

I don't think any blogger, as an individual, has an ethical responsibility to be fair in any argument as long as s/he's representing only him/herself. Maybe it's annoying, but not unethical unless the term is restricted to the accuser's defined set of guidelines, and then it needs to be accepted by the group involved or else it's really moot. Someone representing an organization is another matter.

On the other hand, the question of whether a blogger has a professional responsibility is entirely different. While the setting was a bit different I submit that this theme is quite similar to The Daily Show's Jon Stewart tangling with the former CNN talking heads over his responsibility to have grilled John Kerry the way he does to most of his "guests". It's complicated and I'm sure it'll be argued about for a good long time.

Moi ;) said, "Prove to me that autism or autistic traits are not caused by mercury poisoning. Have proof that does not include government, drug company, or research supported by the AMA. Those groups are corrupt and untrustworthy."

and
"Melodrama is good entertainment, but not good for debate with Moi ;)."

How does being paranoid help autistics?
btw, here's a secret:
Grant Number: 5P51RR000166-430174
PI Name: BURBACHER, THOMAS M.
PI Title: ASSOCIATE PROFESSOR
Project Title: THIMEROSAL IN VACCINE SAFETY STUDY
Institution: UNIVERSITY OF WASHINGTON
Office of Sponsored Programs
SEATTLE, WA 98105
Fiscal Year: 2004

You're willing to throw out his research on the fact that he's associated with the gov't, right? Doesn't evil rub off?

Also, if you don't believe the epidemiology and if you find the GR extolled research to be flawless, then you might as well challenge a person to prove that autism isn't related to the growth in the internet. The simple answer you'll get is, "I am not convinced by the data on whale.to urging me to believe the connection."

Moi ;) said, "All because they don't want the word autism associated with mercury poisoning."

and
"Of course, they can't prove that the two AREN'T associated, either. Don't tell them that, though, or we will be the bad guys...and we will be accused of being uncivil, lol."

and
"I teach instrumental music. There ARE no words in instrumental music. So if ANYONE here knows about communicating without words, it's ME."

and
"YOUR way would PUT him in danger. I don't see YOU doing anything to change that."

and
"Melodrama is good entertainment, but not good for debate with Moi ;)."

and
"It is a real shame, if it bothers you that I was successful in teaching him, or that he loves to talk. If it bothers you that he is actually ABLE to use his brain in a neurotypical manner in any way, then you have a real chip on your shoulder. Not only that, YOU are a BIGOT, if you think having any neurotypical qualities is bad!"

and
"Melodrama is good entertainment, but not good for debate with Moi ;)."

and
"You've proven My point by your obstinance."

and now...
"Personally, I have not taken a total approach of ANY sort with Bug, yet I am lumped into the biomed category by the NDers, because I try to understand and stand up for, or find the good, in EVERY approach."

btw - 1.99 and iTunes will get you the Lost ep. at good resolution.

12/3/05, 12:42 AM  
Blogger Kev said...

et tu Rankin? ;o)

I've used that link before - just to reinforce what the accepted definition of autism is. Is a paradigm that people such as I have to challenge also.

12/3/05, 2:20 AM  
Blogger Anne said...

He IS freaking "neurodiverse" - but DAMNIT he can read. And he can TALK. Of course, if I'd done what the NDs want, I'd have sat with my thumb up my proverbial hind and let him just be "neurodiverse."

Maybe you would, but fortunately, we have people like Michelle Dawson hard at work finding out how autistic kids learn so that more effective educational methods can be used. Her contribution to autism research will dwarf anything that you, I or Wade will ever do, since we mainly just care for our own kids and like to hear ourselves talk. LOL @@. And luckily, Camille goes to the trouble of actually reading relevant current studies and posting a link for the interested, along with her entertaining and informed commentary.

So let's let them do the heavy lifting, they're the autistic ones anyway. Plus, somebody has to stop perseverating and get stuff done, otherwise our dogs would have nothing to wear! Heh, I'll bet Michelle Dawson never went shopping for dog clothing, not even online. I don't know about Autism Diva, but I'll bet she would just pick something a little too froufrou. Don't you?

As far as the term "biomedical" goes, it is very broad, and to me encompasses genetic studies and the use of psychiatric drugs, as well as nutritional approaches and chelation. It's all "biomed" @@ to me, lol.

12/3/05, 11:32 PM  
Blogger Moi ;) said...

Kev: Its simlpy not good enough for very powerful organisations to claim that all autism is one thing or another.

Now that I would agree with. And that goes for both sides.

However, it's the parents' choice as to what avenues they take with their children. You can NOT tell another person what to do, it is up to them to decide what is safe and what is not.

As for John from Generation Rescue, well, BOTH sides have their extremists. I am still not going to tell someone else they can't agree with him. That's their prerogative.

Sadly, thats what autism seems to be reduced to - something to get services. Call me old fashioned but I prefer a medical diagnosis to be rooted in fact.

I agree with the medical Dx part. However, services are integral for a lot of our kids who are on the edge of whether they will be able to live on her own or whether they won't. It IS a shame autism gets reduced to that. But until the schools start getting their priorities straight, that's the main way I have to deal with my son's future.

I'm not blaming you Moi but unfortunately, progressing with autism is not helped by such slapdash reporting. It really does matter in a variety of ways what we call something and how we treat it.

I'm not treating anything. I am, however, trying to give my son a chance. And that's nobody's business but my own.

I think people forget that. People's business IS their own. And whatever a parent chooses, that IS THEIR business. None of us are in the same shoes and none of us have a right to judge that.

Change the definiton? You're arguing an impossibility Moi.

No sheet, Sherlock. ;D

Gotta run -

12/4/05, 10:46 AM  
Blogger Moi ;) said...

Her contribution to autism research will dwarf anything that you, I or Wade will ever do, since we mainly just care for our own kids and like to hear ourselves talk.

Just wanted to say real quick that you can speak for yourself. I advocate for parents in my area, and I also help people online through various educational venues. Lots of parents have gotten services for their kids because of my work. So please don't include me in with you.

I Walk the Walk.

12/4/05, 10:50 AM  
Blogger Kev said...

"Now that I would agree with. And that goes for both sides."

What very powerful organisations exist on 'my' side of the debate?

"You can NOT tell another person what to do, it is up to them to decide what is safe and what is not."

Which is exactly what I've said numerous times. However, that should not stop lively debate on the subject. There seems to be a lot of people on your side of tehd ebate who'd like to pretend treatments like chelation don't carry any risk. Its only through the sorts of discussion that 'my' side bring to the table that that is challenged. I'd also strongly suggest that if you have an issue with people equating biomed with chelation that you take it up with Generation Rescue.

"As for John from Generation Rescue, well, BOTH sides have their extremists."

Which is exactly what I said.

"I'm not treating anything. I am, however, trying to give my son a chance. And that's nobody's business but my own."

Thats your perogative but its also other peoples perogative to disagree with the methods you use. Such is the nature of free speech. Simply pretending things like chelation aren't very dangerous is silly. NB - I'm not saying you do or don't use chelation.

12/4/05, 11:55 AM  
Blogger Anne said...

Moi, I'm so glad you clarified. I had somehow gotten the impression that you think everyone should mind their own business and nobody should advocate for anyone else's kid. My mistake, lol.

12/4/05, 12:46 PM  
Blogger Wade Rankin said...

Kev said...

"What very powerful organisations exist on 'my' side of the debate?"

What "very powerful organisations" exist on "our" side of the debate? GR may be well-endowed enough to buy full-page ads, but that does not make it "very powerful." One of the most potent political forces in this country is the pharmaceutical lobby. GR is but a single flea on the tail of that dog. That flea may eventually grow and cause somme trouble for the dog, but it ain't there yet.

12/4/05, 2:01 PM  
Blogger Moi ;) said...

Moi, I'm so glad you clarified. I had somehow gotten the impression that you think everyone should mind their own business and nobody should advocate for anyone else's kid. My mistake, lol.

You don't get it.

I advocate for EDUCATION. Services.

As far as biomed and whatever other things people do, that's up to them. I don't advocate for or against that, THAT is what I am talking about being "their business."

12/4/05, 6:46 PM  
Blogger Moi ;) said...

Kev - I second what Wade said about the drug companies.

If you think about it, it's really like they are the third side, trying to split apart the other two sides. With this kind of debate going on, they are succeeding, in a fashion.

Oh, and don't put that Autism Shrieks bunch in with "our side." I don't know about you, but I think they smell of something (I haven't figured out what all yet, though).

There seems to be a lot of people on your side of tehd ebate who'd like to pretend treatments like chelation don't carry any risk. Its only through the sorts of discussion that 'my' side bring to the table that that is challenged. I'd also strongly suggest that if you have an issue with people equating biomed with chelation that you take it up with Generation Rescue.

I don't pretend chelation doesn't carry any risk, that's one reason why we don't have a use for it. But that's me. I did the research - and I really doubt that the parents who DO do chelation with their kids don't know that it's dangerous as well. I am sure they know all about the negative aspects. They aren't ignorant when they make their decisions.

And ask for taking up that biomed=chelation thing, it's really not a bad idea. ;) Vitamins, nutrition et al are really not even in the same ballpark.

"As for John from Generation Rescue, well, BOTH sides have their extremists."

Which is exactly what I said.


Not to Moi. Must have missed that somewhere. ;)

...its also other peoples perogative to disagree with the methods you use. Such is the nature of free speech.

No one said it wasn't. I don't mind people disagreeing with me. I don't like it when people choose to ignore the questions I ask, and then proceed to just reiterate their position without listening to what the heck I said. I don't like it when people tell me to be tolerant, yet they are even less so. It's not very productive.

Just my opinion...

12/4/05, 7:00 PM  
Blogger Anne said...

You don't get it.

I advocate for EDUCATION. Services.


Okay, I see. There was no way to know that from your postings here, which mainly had to do with mercury, not education and services.

When you posted to Michelle Dawson, who researches autistic cognition, you challenged her to prove that autism isn't caused by mercury poisoning, implied that you had been the impetus for meaningful autism research and she had not, and so forth. I didn't make the connection that you are in fact an education advocate, so that Michelle's work bears directly on your area of advocacy.

So, do you have problems with the work of Dr. Mottron's group, then? Is that why you feel that Michelle is not doing anything to help autistic kids and that she has failed to earn your respect? If so, in what way do you disagree with their work?

As far as biomed and whatever other things people do, that's up to them. I don't advocate for or against that ... "

But you advocate against those who try to foster learning and development in an atmosphere of acceptance, using methods that make sense for the kid. I think you are operating under a serious misunderstanding about what "ND'ers" are saying. I think maybe you are concerned that "acceptance" means "no services, no education and no development" and living in a cardboard box. It doesn't.

If you are involved in education advocacy and you have a teen-ager, then you must get into the area of teaching the kids self-advocacy, which is one of the things that schools are supposed to do. From my perspective, it is hard to advocate for yourself from a position of weakness. You have to have the sense that you are deserving, that it is legitimate to have needs that non-autistic people don't have, and perhaps even not to have needs that non-autistic people have. If you think of yourself as fundamentally diseased and defective, it makes it more difficult. If you live the life of a victim, it is hard to stand up for yourself.

This is a big part of what parents like me, who have adult kids, are concerned about. When I see an education advocate for autistic kids saying that autistic people don't have a right to have and express opinions about autism, it worries me. I want our kids to have that right. And it has nothing to do with Mercury.

12/4/05, 10:34 PM  
Blogger Kev said...

"What "very powerful organisations" exist on "our" side of the debate? GR may be well-endowed enough to buy full-page ads, but that does not make it "very powerful." One of the most potent political forces in this country is the pharmaceutical lobby."

I'm not sure how the pharma lobby applies in this case - aren't we discussing the non-absolute nature of autism?

"Oh, and don't put that Autism Shrieks bunch in with "our side.""

I have no idea who Autism Shrieks are.

"Not to Moi. Must have missed that somewhere. ;)"

You said:

Yet the ones in the ND movement are not, they are intolerant."

I said:

"you are deluding yourself if you feel that one side is more accepting than another."

Then you said:

"As for John from Generation Rescue, well, BOTH sides have their extremists."

Which is, as I said, exactly my point.

12/5/05, 11:45 AM  
Blogger Wade Rankin said...

Kev said:

""What "very powerful organisations" exist on "our" side of the debate? GR may be well-endowed enough to buy full-page ads, but that does not make it "very powerful." One of the most potent political forces in this country is the pharmaceutical lobby."

I'm not sure how the pharma lobby applies in this case - aren't we discussing the non-absolute nature of autism?"

Actually we were discussing whether or not I'm too dense to understand science, but the discussion certainly included the non-absolute nature of autism. I was responding -- albeit with a lack of clarity -- to your reference to a lack of very powerful organizations on your side of the debate. Specifically, I assumed you meant to imply that GR was a "very powerful" organization, which I really do not believe to be true. (That assumption may be based partly on the fact that we can't seem to avoid discussing JBH and GR these days.) I mentioned the pharmaceutical lobby merely to provide an example of what I consider to be a VERY powerful organization.

12/5/05, 2:14 PM  
Blogger Moi ;) said...

If you read my posts here, or my blog, you would already know that I am an advocate. :)

BTW when I talk about services, I am not talking about Government services as a rule. I am talking about school services. Yes, in a sense government, but that is splitting hairs.

Most of the parents who post here and have their own blogs are not at the point where they Need government services yet. They need to get the kids through school first....

Is that why you feel that Michelle is not doing anything to help autistic kids and that she has failed to earn your respect?

She doesn't have my respect because she blew me off. She ignored every question I asked her. She did not Listen to me.

At least if you and I are discussing something, you answer me if I ask you something!

When you posted to Michelle Dawson, who researches autistic cognition, you challenged her to prove that autism isn't caused by mercury poisoning, implied that you had been the impetus for meaningful autism research and she had not, and so forth.

No, when I posted to her, it was in response to her statements about mercury poisoning and autism, also her assumption that doctors really would not misdiagnose one for the other. If you have a child with autism, then you know how much the doctors DON'T know.

Mercury has never been proven NOT to cause autistic traits or autism. I prefer to use the term "autistic traits" rather than autism itself - I think the two ARE different. And Yes, I do think mercury poisoning and autism are misdiagnosed.

But she ignored me. So that's that.

But you advocate against those who try to foster learning and development in an atmosphere of acceptance, using methods that make sense for the kid. I think you are operating under a serious misunderstanding about what "ND'ers" are saying. I think maybe you are concerned that "acceptance" means "no services, no education and no development" and living in a cardboard box. It doesn't.

Actually, it does.

If you want everyone to "accept" them as they are, then they sure as hell will. Especially if it is going to cost them money. I am speaking of the schools. They'd be happy to leave autistic kids the way they are, it would be a lot cheaper. You can't advocate this way to the schools. The school administrators are only concerned about the bottom line - thanks in part to NCLB - and the less they have to do, the better!!

They won't make any effort to provide social skills classes, anything remedial except a dumping group with all the E.D. kids and they will take advantage of your ignorance every chance they get. Schools aren't obligated to provide social skills groups, life skills - they are obligated to provide an academic education. They would sooner take your kid and stick 'em in a special school - and not because the kids in the mainstream classes can't handle the diversity! My son has never had an acceptance problem, he has been mainstreamed his whole life - and he has a full-time aide, to boot!

With the recent SCOTUS decision, IDEA has been thrown into the trash. Can't fall back on that any more, either.

IMO the NDers need to say it differently, if they don't mean that.

If you are involved in education advocacy and you have a teen-ager, then you must get into the area of teaching the kids self-advocacy, which is one of the things that schools are supposed to do. From my perspective, it is hard to advocate for yourself from a position of weakness.

It is even harder when you aren't aware when you need to advocate for yourself. That, IMO, is what the mercury has done to him. It has taken away that kind of awareness. The schools don't teach that. At least not here in PA.

I must say that my son doesn't feel he's undeserving of anything, lol, his self-esteem is fairly high. He's really not very aware that the Asperger's affects anything, or how, or when. If he were, I am sure it would be a bit lower.

Unfortunately I can't help it if other parents allow or cause their child to have low self-esteem. I say "allow" in the context of allowing other people to take advantage of them. But I can sure help them prevent the school from doing it to the kids. And believe me, they do it all the time.

They tried to do it to my son, too. They violated his civil rights more often than I care to count. You'd think they'd learn, they never win with me. Life's a bitch and so am I. ;D

12/5/05, 4:27 PM  
Blogger Moi ;) said...

""What "very powerful organisations" exist on "our" side of the debate? GR may be well-endowed enough to buy full-page ads, but that does not make it "very powerful."

I would tend to agree with that, Wade. I had never heard of GR until I clicked on a link to it on someone's blog a couple of months ago.

It's still basically unknown outside of the autism blogosphere.

12/5/05, 4:31 PM  
Anonymous Ian Parker said...

Some quotes:

Kev: I've used that link before - just to reinforce what the accepted definition of autism is. Is a paradigm that people such as I have to challenge also.

Anne: If you are involved in education advocacy and you have a teen-ager, then you must get into the area of teaching the kids self-advocacy, which is one of the things that schools are supposed to do. From my perspective, it is hard to advocate for yourself from a position of weakness. You have to have the sense that you are deserving, that it is legitimate to have needs that non-autistic people don't have, and perhaps even not to have needs that non-autistic people have. If you think of yourself as fundamentally diseased and defective, it makes it more difficult. If you live the life of a victim, it is hard to stand up for yourself.

Michelle Dawson: The previous post is proof that once people decide that autistics can't communicate (and will never do this, never do that, and are doomed), they become unable to hear us, much less respect us.

Instead, once they have ignored and disrespected us, they will claim to be the authorities about what we've said, what we've done, what we've written, what we think, what we're worth, where we belong, etc. And they will tell us what to do, what decisions we must make, how we should conduct ourselves, how lousy we are, etc. And they will mock and ridicule us too.

---

I don’t want to put words anyone’s mouth, but It sounds to me like the authors of some of the comments in this post do not see autism as a disease (in some cases the quote is illustrative, in others I’m also bringing in an interpretation of a pre-existing body of writing). The definition of disease I’m using is
“an impairment of the normal state of the living animal or plant body or one of its parts that interrupts or modifies the performance of the vital functions and is a response to environmental factors (as malnutrition, industrial hazards, or climate), to specific infective agents (as worms, bacteria, or viruses), to inherent defects of the organism (as genetic anomalies), or to combinations of these factors.”

Source: Merriam-Webster's Medical Dictionary, © 2002 Merriam-Webster, Inc.

The reason I bring this up is that I may be misinterpreting, but it seems to me that more than a few who subscribe to an ND POV often bundle together the ideas that a) autism is not a disease but another way of thinking, with b) if one believes in treatment for autism (as distinct from co-morbidities) then one is not being respectful, and c) that therefore one either wishes to deny autistics their rights or may influence autistics to feel that they are not deserving. If I’m interpreting their words correctly then I have to disagree.

On the first point, I would suggest that autism can be both a disease and another way of thinking. Some of what I’ve read suggests that a common thread among autistics is a tendency to have an impaired ability (which is NOT the same as no ability) to carry out Emotional Coordination and Experience Sharing. From Dr. Gutstein’s “Solving the Relationship Puzzle”, pg 33, “While typical children carry out Emotional Coordination effortlessly… it is actually a highly complex process, requiring the integration of a number of different brain centers. Success requires rapid attention shifting, careful observation and evaluation of subtle emotional states, an awareness of personal space and internal reactions to a number of other elements. If at any point even one of the many components does not function, the entire process of Emotional Coordination breaks down.” Presumably this at least occasional ‘break down’ is responsible for some of the social impairments that many with autism face.

If you interpret the condition described in the quote above as meeting the definition of a disease then autism could be classified as such, regardless of views of whether other symptoms (e.g. sensory integration difficulties, etc.) are part of the pathology or ‘merely’ co-morbidities. I would argue that there’s nothing pejorative in the above statement, and that the described condition DOES NOT a priori diminish other cognitive or reasoning capabilities. Difficulty in integrating incoming information does not invalidate the thought processes of autistics, or render them more or less distinct, diverse, or valuable, regardless of whether the thought processes are influenced by genetics, environment, or both. The above does suggest a disease state though. And Kev, just as you mentioned in posts this week that you fear an autism = mercury link may force certain types of treatment on your daughter, I fear that ‘autism as merely an alternate state of being’ lets people off the hook for treating an expensive disease on the grounds that it is not a disease at all.

For the record, my daughter is not part of an RDI program, although it is something that we (my wife and I – our 29 month old daughter very much enjoys some of the activities but has yet to state an opinion) are interested in pursuing and are currently looking into.

Second, implying that calling autism a ‘disease’ or suggesting treatment shows a lack of respect suggests that disease, treatment, and respect for the person cannot go together. I think it would surprise and anger a lot of people to hear that the three cannot co-exist. Are people with CF considered less worthy of respect? How about MS? Cancer? Angelman Syndrome? Down’s Syndrome? Depression? All of the above are recognized as diseases. Or is autism the only disease for which those afflicted are unworthy?

There is a legitimate concern that some people may see any physical, mental or neurologically based disease as rendering a person less ‘whole’ or less ‘worthy’. But the issue is with the person who holds such thoughts, not with the person who has the disease. The answer is to educate and enlighten those who hold these opinions, not to deny that the disease exists and label it as an alternate way of being, giving people a way to ignore it.

Third, the linkage is made between belief that autism is a disease and the lack of rights of an autistic person, through either denial by others or lack of assertiveness due to self-worth issues. My daughter is entitled to all of the same rights as anyone else, including the right to treatment (coupled with the right to not be subjected to unnecessary or risky treatments), the right to security of person, the right to an education, and the right to assistance (equality of opportunity) to enable her to become the best, happiest, and most self-actualized person she can be. As a parent I'll do my best to teach her to stand up for herself and exercise those rights. By recognizing her autism and challenging it, my goal is to give her opportunities and choices for her to make that she might not otherwise have. I don’t believe that this will change her personality or thought processes. But I do believe that it will add to her capabilities. Not doing all that I can – if I believe that it will help her - would be a denial of her rights.

I will oppose anyone who seeks to deny her rights because they see her as unworthy or less deserving, for whatever reason, including her autism. But I will also oppose those who feel that her right to treatment interferes with who ‘they’ think ‘they’ are or who my daughter should be. I respect others’ right to treat or not treat, depending on their view of risk and effectiveness. But it sounds like not all on the other ‘side’ are willing to allow me the same latitude, implying that I am disrespectful or want to deny them their rights if I disagree with them.

12/5/05, 6:45 PM  
Blogger Moi ;) said...

I fear that ‘autism as merely an alternate state of being’ lets people off the hook for treating an expensive disease on the grounds that it is not a disease at all.

Loved your post, Ian. Unfortunately I have to snip and clip.

Letting Them Off The Hook - that is the core of the whole idea I've been trying to get through. Maybe I can't see for too much "fluff".... @@

There are a lot of people who get let off the hook if we just let autism be thought of as another way of thinking, another way of being. The doctors, the schools, the drug companies, the government, the therapists, the researchers and scientists, you name it.

The answers are not always medical, however, we need to be able USE the medical labels and therapies to our children's advantage. What works for you may not work for someone else.

I have no intention of letting the school off the hook for my son's education. However, autism as a way of being or another way of thinking would most certainly do that.

Autism as another way of thinking or "an alternate state of being" is not in the DSM-IV, it's in there as a Mental Disorder. Schools don't teach to your way of thinking unless it IS in the DSM-IV. If co-morbidities get in the way of an autistic's education, don't think that an autistic state of being will get them the services they need to access education, either.

There are a lot of ways a person can "be" - from everything from religion to race to hair and eye color to learning and/or physically challlenged. "Being" in and of itself does not entitle anyone to any kind of treatment or education. I want to use what DOES get them the treatments and the education. A state of being isn't going to cut it.

BTW Ian, I think you are going to be an excellent advocate for your daughter. Start learning your state school code Now (it will take that long to digest, lol) and spend a lot of time on the Wrightslaw site.

implying that calling autism a ‘disease’ or suggesting treatment shows a lack of respect suggests that disease, treatment, and respect for the person cannot go together. I think it would surprise and anger a lot of people to hear that the three cannot co-exist.

That I think is what made me angry in the first place. It was assumed that I did not respect people - because of what? Because I didn't agree with them? I really don't care what they think or do about their/their child's autism. It's not my business. I respect them any way they want to go. Until they get personal with Me.

BTW The schools DO consider autism a disease - a Mental Disorder. That's what the DSM-IV is - Here's a link. That is what they use for the guidelines of getting the children services, the proper educational tools, etc.

There is a legitimate concern that some people may see any physical, mental or neurologically based disease as rendering a person less ‘whole’ or less ‘worthy’. But the issue is with the person who holds such thoughts, not with the person who has the disease. The answer is to educate and enlighten those who hold these opinions, not to deny that the disease exists and label it as an alternate way of being, giving people a way to ignore it.

Thank you thank you thank you!!! Of course there is that concern. And when people who have children on the spectrum are berated because of their outlook on a different way of treatment, or their outlook on autism in general, that is a waste of beration better spent elsewhere. Because most of these parents DO find their children worthy, don't ya think?

12/6/05, 11:39 AM  
Anonymous MAría Luján said...

Dear Mr Wade Rankin
I really share the majority of your feelings about the debate of Autism causes and treatments. Unfortunately we have seen a polarized discussion where open mind, respect by others and flexibility seems to be absent. In a world of decissions for our children in an individualized basis, in a territory of grays, the white and black polarization is really painful.
The need to know more about the ASD complexity has been extremely strong in my case and , after near 2 years of continuos reading and commentary, I do think that the puzzle is extremely complex. My preferred answer is "not all". It seems to ME that even in the totally opposite sides of the fence, there are some true and some wrong for the general idea. Not all children are affected by thimerosal-but some, not all children are affected by MMR- but some, not all children has ASD only genetic-but some, and combination of these and also other things and on and on.
Thank you for your blog and for sharing your ideas with other parents.
MAría Luján

12/17/05, 1:35 PM  

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