Progress/No Progress

22 Jul

It’s fascinating to me how things seem to go in circles, an idea is challenged, is rejected, you think you’ve moved on and then you find that same idea being used as a strawman argument against you.

In recent days following the massively successful petition regarding the ‘Autism Every Day’ video and the flurry of blog posts regarding the murder of William Lash IV I’ve seen a remarkable return of an idea I thought long dead from the mercury militia – the ‘my problems are worse than yours’ gambit.

Numerous people have tried to insinuate that everyone who has either signed the petition or denounced the murder of William Lash IV are people who’s kids must be ‘high functioning’ and that therefore we cannot have any real understanding of how difficult it is to parent a ‘low functioning’ child.

This is fallacious for numerous reasons. Mostly though its fallacious as its simply untrue. From speaking with a lot of the parents who these people are referring to its clear that they do not have ‘high functioning’ kids. Like my own child, they are considered ‘low functioning’. These are kids who used to smear faeces on walls, run into traffic, have meltdowns at excess noise/smells/tastes/light quality, bang their head against the wall, not communicate, not be toilet trained etc etc. The only difference between ‘them’ and ‘us’ is what we chose to do to move forward. In terms of the challenges, pitfalls, low points and stress we know _exactly_ where ‘they’ are coming from. Parenting a special needs kid is bloody hard work.

The goals for us as parents for _all_ our three kids are as follows: that they are happy, confident and respectful of others. That’s it. If they are happy, confident, respectful of others and rich then that’s great. If they are happy, confident, respectful of others and using a keyboard to communicate then that’s great too.

So how do we do that? I believe that a happy child is a child that is loved unconditionally, that _knows_ it is loved, that _knows_ it is valued exactly as they are. That is engaged first and foremost as a child. I don’t believe you can do that – honestly and totally do that – unless you can genuinely accept that child. That is _not_ to say that some parents don’t love their kids. I believe Erik loves his daughter. I believe JB loves his son. But it seems to me that they see their kids first and foremost as a medical puzzle to solve. No child should be the battleground for their parents hurt and anger.

So – acceptance – that’s the same as doing nothing right? Hardly. Acceptance (to me) means accepting that one’s child has a) a way of perceiving the world that necessitates a parent to alter their teaching and parenting methods and b) that that different perception is equally as valid a state of existence as any other. It seems obvious to me that an inability to see one’s child existence as valid can only result in a child not feeling valued or confident.

Acceptance is just the start. The child still requires teaching and parenting. That means they can be cute, naughty, rude, hilarious, moody, loving and silly. All these states require handling as a parent but for us the approach we take stems from the concept of acceptance.

But I am not suggesting it is not hard work and depressingly difficult sometimes. Of course it is. My objection to the ‘Autism Every Day’ video was not that it showed the bad things. Its that it _only_ showed the bad things and it had to stage manage the situations in order to show those bad things. Nothing good can come from dishonesty.

Sorry but I’ve removed some bits of this post dealing specifically with my daughter. Upon reflection I guess I’m still not comfortable putting out things about her to the whole internet.

106 Responses to “Progress/No Progress”

  1. David N. Andrews BA-status, PgCertSpEd (pending) July 29, 2006 at 08:26 #

    Kev: “There are thousands of parents on the various biomed groups – where are all the recovered kids? If we had thousands of recovered kids then this would be international front page news.”

    We keep getting told of these children but there are never any around… we’re shown no proof of these ‘cures’….

  2. María Luján July 29, 2006 at 11:38 #

    Hi Kev
    You said
    “They start (as you did) with GFCF diets and that seems to have some effect (although that effect is on health not autism ) but they note it doesn’t eliminate the core attributes of autism so they move on to B12 sprays, megadose’s of vitamins and supplements and that doesn’t quite cut it either so they move on to chelation and again, that doesn’t do it either, so some start Lupron.”
    but for many of us the experience has been totally different.
    I found first that my son was celiac and milk allergic, with a lot of GI issues. After near 6 months in GFCF diet- and checking for HM, I found very high levels of Hg in blood-checked many times and in different labs. My husband and I were shocked, because it was ununderstable- no commercial lab, no near fish consumption or exposure, no accident. We were no searching for a “cure” or specific “causes”- have never and will not- but to improve his life´s quality, as I explained many times. And In our case, the medical conditions- many more were evident after careful and adequate testing- appeared in front of us as abnormal tests if we knew what to search- always local labs, many times more than 2 local labs, careful discussion with lab´s staff about procedures. What we have searched was based on biomedical books and other parent´s experiences. What we have done after in terms of what tests, what protocol of test, what lab, what analysis of the results was done under our personal research and consultation with mainstreamed doctors. The interpretations has been done with the combined effort of familiar and my son´s doctors research, based on published science. And much more in terms what treatments to choose. I respect every parent´s choice- even if I do not share- but I do not share-personally- some of the approaches you mentioned- because of safety´s concerns; efficiency´s concerns or both combined and I am extremely interested on the science behind.
    What I see many times is the generalization of the experience, the approach and the treatments . I assure you that the experience in biomed is totally different for each family and depends on a lot of circunstances.
    MAría Luján

  3. Ban me... please July 29, 2006 at 14:22 #

    Kathy N. wrote:

    “I’ll definitely follow up on it, but I have to mention that I do find it interesting that if my son DID turn out to have Wilson’s disease, the treatment would most likely be 1) supplementation with zinc (which we’ve just begun ramping up on because other “biomed” parents suggested using zinc to lower my son’s copper level) and 2) irony of ironies—chelation”.

    Zinc and Chelation… that is simply hilarious… you go girl! Follow your gut. The GF/CF diet worked wonders for my son as well. Of course, I had to go through a plethora of allergy tests and an intrusive GI procedure before a DAN! actually ran some tests and recommended that we go full throttle with the diet. We had been holding off due to our ped’s concern that he wouldn’t be getting enough nutrients. Huh? Everything that he ate prior to GF/CF came out within a few minutes/hours after eating anyway (major diarrhea) so call me crazy but I doubt he was getting all his nutrients before implementing the diet. Of course, I’ve never taken a class in med school about pediatric nutrient content so what do I know? Of course, I DO KNOW that my son’s gut healed and he stopped the diarrhea soon after implementing the diet and a few supplements including a glutathione cream… but again, no med school here so what do I know? Oh I also KNOW that many of his “sensory issues” began to magically disappear after implementing a very limited DAN! program. Again, though, no med school. Go figure. I’m just happy that I saved my money instead of going to med school…

    p.s. they probably wouldn’t have accepted me into med school… I have way too much common sense for them.

  4. Joseph July 29, 2006 at 18:39 #

    I’ll definitely follow up on it, but I have to mention that I do find it interesting that if my son DID turn out to have Wilson’s disease, the treatment would most likely be 1) supplementation with zinc (which we’ve just begun ramping up on because other “biomed” parents suggested using zinc to lower my son’s copper level) and 2) irony of ironies—chelation.

    I understand they use special chelating agents for Wilson’s, such as D-penicillamine or trientine hydrochloride. Even if the kid doesn’t have Wilson’s (which is likely), these might be helpful in bringing down copper levels.

    There are two reasons I’m going to a DAN! doctor rather than trying to accomplish everything through our regular pediatrician. The first reason I’ve already mentioned: she has doubts about the biomed path.

    If you go to a regular pediatrician and mention extraordinarily high levels of copper, and your concerns, I doubt the pediatrician will go, “nah, let’s ignore it”. Following a mainstream approach seems a lot better because of the potential risk of trying experimental treatments, and also because you’re less likely to be duped. The DAN! doctor could also not care about the specifics in this case and recommend the usual, DMSA plus ALA, which might not be the what the kid will benefit from.

  5. Joseph July 29, 2006 at 18:58 #

    I just did a quick search and found one of the reports showing the results of Dr. Cade’s research. http://www.lightlink.com/lark/opioid

    Unfortunately, that’s not double-blind. The parent knows quite well when the kid is the diet and when they are not. It’s similar to the study Jennifer cited on the Ketogenic diet, which showed 60% improvement rate. But like I said, 60% improvement rate is known to be reported on placebo. So they need to follow those up with methodologically sound studies. It’s possible the diets are helpful to an extent, but it would be important to know if they are helpful compared to placebo, and what exactly they are helpful with, and which subgroup of autistics they are able to help.

  6. Joseph July 29, 2006 at 19:09 #

    María,

    After near 6 months in GFCF diet- and checking for HM, I found very high levels of Hg in blood-checked many times and in different labs. My husband and I were shocked, because it was ununderstable- no commercial lab, no near fish consumption or exposure, no accident.

    I’m curious if you were able to determine where the high levels of mercury came from. (Clearly, it’s not possible for high levels of blood mercury to come from 120 micrograms in vaccines). And are they high enough to cause neurological impairment, or is that totally unrelated to autism in this case? Did you test for lead as well?

  7. clone3g July 29, 2006 at 21:18 #

    Kathy,
    Response to GFCF diet has nothing to do with opioids and peptides as many DAN! suggest. If they are wrong about that, what else have they been wrong about?

    Sue M: they probably wouldn’t have accepted me into med school… I have way too much common sense for them.

    Yes. I’m sure that’s the reason.

  8. Ban me... please July 29, 2006 at 22:46 #

    “Yes. I’m sure that’s the reason”.

    Ok. Maybe it has to do with the fact that I would never have fallen for the “it’s good to poison babies” philosophy?

  9. Kathy N July 29, 2006 at 23:14 #

    Hi again.

    Kev–Thanks for your response. How long did you keep going with the GFCF diet and were you super careful about it when you did it (i.e., did you make sure to avoid cross-contamination and so forth)? Also, what would you consider the “core attributes” of autism? (I’m not being sarcastic or facetious here…just curious.) Are you speaking to the diagnostic criteria in the DSM-IV–wait, I think you’re in Great Britain and I can’t remember the name of the equivalent document there, but you probably get my meaning). I think my child has made progress in almost every way (in a very short time), so I’m curious to see what you’d consider as relevant areas for improvement. And by the way, I’m not trying to say that I think the diet works for all autistic kids; I think I mentioned earlier that there are probably as many effective treatment combinations as there are types of autistic kids (okay, maybe not that many, but lots!). 🙂

    You wrote:

    “But seeing good results in one area does not automatically validate all the other ideas. At its heart the question ‘does mercury/thiomersal/vaccines/ cause autism?’ is a science one. It can only be answered with good science. I don’t see how it can be answered by saying ‘yes, because the GFCF diet worked for me’.”

    I don’t believe I ever said or even implied that mercury/thimerosol/vaccines cause autism. I also don’t think I said or implied (I certainly hope I didn’t) that the results we’ve seen with the GFCF diet is validation for all of the other biomed ideas. What I said (to the best of my recollection—I’m too lazy to scroll that far up and check right now) was that it’s the biomed folks who are suggesting that people try the GFCF diet. We’ve seen great results with the diet. It’s the biomed folks who suggest testing for and potentially treating for heavy metal poisoning. I don’t know if we’ll go the chelation route. What I do know is that I was very skeptical about the GFCF diet but it has panned out for us. Because of that, I’m willing to be more open-minded to what the biomed folks are saying, so I’m looking into other types of biomed treatments, just one of which is chelation. Okay, I probably didn’t word it exactly that way before, but that’s what I was getting at both then and now.

    Joseph–I can’t imagine a remotely feasible way for someone to do a double-blind study to test the efficacy of the GFCF diet. To start, the logistics are a nightmare. I mean, how would you manage to keep the parents and children from knowing whether the food the children were eating was GFCF, not to mention the fact that the food issues so many of these kids have would preclude many from even touching the food if you tried to give them some sort of pre-packaged food offerings for the control group versus the experimental group? Perhaps the biggest problem with trying to do a double-blind study of the diet (as if the above reasons aren’t enough) is funding. I don’t know of any organization or company that would fund this research (much as I would love to see the results were it somehow, some way done). I understand the reluctance to blindly accept (pun intended) the anecdotal evidence that is out there (no matter the preponderance of it–and there is a LOT of it out there); however, when a double-blind study is not an option, that doesn’t mean that no research can be done to study the issue. I think that Dr. Cade’s research is very convincing and shouldn’t be discounted just because there is no feasible way to accomplish a double-blind study on the subject matter.

    David – You wrote:
    “We keep getting told of these children but there are never any around… we’re shown no proof of these ‘cures’….”

    I’d suggest joining two biomed type Yahoo groups I’ve found of recent: GFCFKids and Mercury-Autism. Now please don’t be rude when on the lists (we’re all (hopefully) courteous, mature adults here). I would just ask nicely for people to respond to you to tell you of their successes with the diet and/or chelation. If you prompt by saying that you’re very skeptical, you’ll probably get even more results.

    Clone–You wrote:

    “Response to GFCF diet has nothing to do with opioids and peptides as many DAN! suggest.”

    Could you please point me to research (I’ll gladly look at double-blind and NOT double-blind studies) that proves your point above? Again, I’m not being sarcastic here. I gladly read info from both camps (hence I’m posting on this blog–and thanks, Kev, for sharing space for the postings here).

    Cheers!

    Kathy

  10. David N. Andrews BA-status, PgCertSpEd (pending) July 29, 2006 at 23:29 #

    Kathy: “Now please don’t be rude when on the lists … ”

    Get off your high horse, and you might find people more amenable here.

    What exactly was “rude” about what you quoted? I was stating a truth: many claim to have cured their children of being autistic but they never come up with the goods. You might wish to talk to the curebies about this and ask them to give a properly objective evaluation… they don’t, because they can’t. Not even Lovaas could really do it… so it’s unlikely that the biomeds can.

    “what would you consider the “core attributes” of autism? ”

    You set this for Kev, but as an applied educational psychologist qualified to make the diagnosis, I can tell you.

    The core attributes are those set out in any of the following:

    DSM IV-TR
    ICD 10
    Gillberg & Gillberg, 1989

    … do I go on? They do not include the things usually bandied about by the biomed lot as being autism-related issues.

    Kathy: “Joseph—I can’t imagine a remotely feasible way for someone to do a double-blind study to test the efficacy of the GFCF diet. To start, the logistics are a nightmare.”

    Okay. Wrong. It is possible, and has been done (and this diet was found wanting in the central issues pertaining to autism as it occurs in children). I can try looking for a study, if you really need one, but I won’t sacrifice my MEd thesis for you… so unless you’re prepared to wait, you get to choose one of the following: accept that someone who has been researching autism for the past 10 years might know somethign about this, or go and pester someone else.

    Kathy: ” I would just ask nicely for people to respond to you to tell you of their successes with the diet and/or chelation.”

    Unless a proper study has been conducted to account for as many of the confounding variables as possible, this is not going to be a line of inquiry adhered to on this blog, I can assure you. So far, the evidence pertaining to chelation has not been encouraging, when subjected to proper scientific scrutiny.

    Kathy: “I think that Dr. Cade’s research is very convincing and shouldn’t be discounted just because there is no feasible way to accomplish a double-blind study on the subject matter.”

    Has he actually explained, within the scientific paradigm, why a DB study is unfeasable, or can he just not be arsed to conduct one?

    Cade has got a good-sized set of critics, as I hear tell.

  11. Do'C July 29, 2006 at 23:33 #

    “I can’t imagine a remotely feasible way for someone to do a double-blind study to test the efficacy of the GFCF diet.”

    Kathy

    There is a study planned or underway or something – I don’t know the actual progress of it.

    http://www.nimh.nih.gov/autismiacc/rochesterautism.cfm

    Essentially, all the kids will go GFCF, but while at school, some kids will be given back the wheat and dairy without the parents knowledge.

  12. Ban me... please July 29, 2006 at 23:49 #

    Kathy,

    You seem like a wonderful person… Get out while you still can! Seriously 🙂 They could get 1,000 anectdotal stories like ours here and it means nothing to them. Do you see how David didn’t even get what you wrote about being rude on the lists? He completely didn’t get it. Don’t be confused, it’s him, not you 🙂 Peace out.

  13. María Luján July 30, 2006 at 01:27 #

    Hi
    Clone 3g said
    “Response to GFCF diet has nothing to do with opioids and peptides as many DAN! suggest.”
    Research points to another direction
    “Mechanisms of disease: the role of intestinal barrier function in the pathogenesis of gastrointestinal autoimmune diseases.”:http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16265432&query_hl=1&itool=pubmed_docsum
    “Understanding the role of the intestinal barrier in the pathogenesis of gastrointestinal disease is an area of translational research that encompasses many fields and is currently receiving a great deal of attention. This review is timely given the increased interest in the role of a ‘leaky gut’ in the pathogenesis of gastrointestinal diseases and the advent of novel treatment strategies, such as the use of probiotics”.
    “Tight junctions, leaky intestines, and pediatric diseases.”:http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16092447&query_hl=1&itool=pubmed_docsum
    “Intestinal permeability, leaky gut, and intestinal disorders.”:http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=10980980&query_hl=1&itool=pubmed_docsum.
    María luján

  14. Jennifer July 30, 2006 at 04:28 #

    Kathy
    If you find that your child does better without wheat and milk, this may easily be due to allergies to these substances. These are among the most common childhood allergies. Or your child may have lactose intolerance.

    The opiod theory of the GFCF diet is pretty well debunked in the serious scientific literature. There is no particular indication of opiod peptides, when they are analysed for in a rigorous way.

    http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=12578238&query_hl=3&itool=pubmed_docsum

    Moreover, the first double-blind crossover study found no effect of the GFCF diet for children wth austim

    http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16555138&query_hl=9&itool=pubmed_docsum

    Can you show us something that Dr. Cade has published in the peer-reviewed literature? When my child was diagnosed many years ago (6), he was already working in this area. I don’t think he’s published anything since then.

  15. Joseph July 30, 2006 at 04:52 #

    Joseph—I can’t imagine a remotely feasible way for someone to do a double-blind study to test the efficacy of the GFCF diet.

    Seems difficult, but that’s not an excuse to not do it. (I’ve heard the same thing about ABA). If you seach Google Scholar for “double-blind diet” you’ll find some examples of how that’s been done before. (example).

    Regarding BioMed in general, there are good reasons why it has had very little to show for itself (and I should write a lengthy post analyzing why this is). There is considerable evidence that autistics have substantial neuroanatomical differences compared to non-autistics (e.g. brain size, neuron size, neuron density, grey and white matter distribution, and so on). While I probably can’t generalize and say 100% of autistics have specific neuroanatomical peculiarities, the findings are significant. So we’re not talking about a simple biochemical imbalance that you might correct with a diet or by chelating. It’s different with something like Phenylketonuria or Wilson’s disease, which I’d argue should be medicalized for good reason. Now, certain medical conditions might be more common in those with an autistic neuroanatomy. And it’s fine to medicalize these conditions as they are generally treatable. But clearly, while you can make a child more healthy by treating these conditions, the autistic neurology remains. So if a child truly has the autistic neurology, that child could at best emulate NT behavior but never be truly NT.

  16. Joseph July 30, 2006 at 05:09 #

    Anecdotal evidence is nothing.

    And the fact is that there are easily over 1000 anecdotal stories out there, if you count those that people keep to themselves. (For the math on that, see my latest post). There are anecdotal stories of people who don’t do any biomed, except the people who don’t do any biomed don’t generally use terms such as “recovered” or “cured”. They’ll just proudly tell you things such as “my autistic child made the honor roll”.

  17. Kathy N July 30, 2006 at 05:57 #

    Ban Me – Thanks for your kind words. Don’t worry about me, though. I had a good chuckle as I read through David’s post.

    Do’C – Thanks for your post and the link. I will check it out after writing this.

    David–You seem to suggest–no, actually you state quite bluntly–that I have been brash and offensive. I find this amusing considering your last post, and perhaps I shouldn’t even dignify your post with an answer, but here you have it nevertheless (though this might be my last on the subject since I don’t want to hog so much of Kev’s blog commentary space).

    You wrote:

    “Get off your high horse, and you might find people more amenable here.”

    I’ve actually been very impressed with the caliber of the discourse going on within this blog, and the only person I’ve found not to be amenable thus far is you. Since you seem to be quite wrapped up with the worth of degrees, I’ll just let you know that mine are in English and sociology, though I minored in psych in undergrad.

    After reviewing what I’ve posted and what you’ve posted, I can only come to the conclusion that your definitions for rudeness and brashness are significantly different from mine (and, I daresay, from Webster’s and most other dictionaries’). If you find a person to be rude and brash just because they disagree with your point of view, there is not much that I can do to change your mind. I would, however, like to let you know the meaning behind my comment that started you off on your diatribe. I think you probably already figured it out upon re-reading my post (following the prompt from Ban Me), despite your subsequent attempt to bluster through an explanation for your hostility). You wrote:

    “What exactly was “rude” about what you quoted? I was stating a truth: many claim to have cured their children of being autistic but they never come up with the goods. You might wish to talk to the curebies about this and ask them to give a properly objective evaluation… they don’t, because they can’t. Not even Lovaas could really do it… so it’s unlikely that the biomeds can.”

    I was not commenting that you had said anything rude in the text I quoted. I was merely asking you to refrain from being rude upon joining the Yahoo groups I mentioned. I was concerned that you might join a group and then rant something to the effect of “you’re all so stupid to believe that biomedical treatments can be effective.” I now see that my concern was warranted based on your response to my request. I can’t help but think back fondly to one of my favorite psychology professors who said that psychologists (and psychiatrists) are the most messed up people one could ever hope to find. (Truly no offense meant to any psychologists/psychiatrists reading this, but it was quite a funny statement.)

    Kathy

  18. Ms Clark July 30, 2006 at 06:31 #

    The Rochester study has been going on for a couple of years now… UCD has done or is doing a GFCF or maybe it’s just GF or CF study, too. Dr. Rodier, of Rochester U, explained that one reason they wanted to study the GFCF diet is that sometimes the kids ended up with too little vitamin D in their diets because they weren’t drinking milk. (you can find video of her saying this on the MIND institute’s website).

    The whole opiod theory is that autism is really just being stoned. Take away the opiods and the kid can get “sober” or whatever. It’s a really stupid idea because you can look at autistic brains and see that they are different. It’s not the kind of difference you can change with diet. The neurons are different, the brain is constructed totally differently and functions differently.

    Mostly what parents notice with the GFCF diet is not that their kids seem less “stoned” but that they now don’t have pain in their guts, the same thing that normal kids would experience.

    You should know that if you go to a DAN! doctor you have a really good chance of being fed a bunch of lies and half-truths. They aren’t going to tell you why it’s a bad idea to use Doctor’s Data Inc. labs. They aren’t going to tell you truth that there hasn’t been an autism epidemic.

    You can read about Dr. Laidler’s experience being in the middle of the DAN! world on the autism-watch website. He was a top DAN! doc, I highly recommend that you read what he writes about his and his wife’s experience with DAN! http://autism-watch.org/about/bio2.shtml

    I don’t know anyone who bashes GFCF diets outright. They help some kids feel better, going GFCF helped ballastexistenz (an autistic woman) feel better, Kassiane (rettdevil.blogspot.com) has celiac, she doesn’t eat gluten, it makes her sick. They are fully autistic. The problem comes from people like Wakefield, who says that all autistic kids should go on the diet, and stay on it perfectly for one full year before they can possibly know if it will help the child. In a year a kid is going to grow, of course, in a year he will seem “less autistic” or “less developmentally delayed” on some measure.

    The mercury parents seem to get a kick out of calling us “anti-everything-biomed,” regardless of the fact that it’s an absolute lie. Most of us are against stupid quack treatments, including chelation, which was a stupid quack treatment long before it was applied to autism, and will be a stupid quack treatment after it goes out of vogue with autism. There are legitimate uses for chelation, but you don’t go to a DAN! doctor for legitimate chelation, you go to a DAN! doctor for quack therapies like RNA drops and magnetic clay baths, mild (read, pointless) HBOT, and far-infra red saunas and toxic dosages of vitamin A or IV disodium EDTA pushes that can kill and have killed.

    DAN! is bad news. The best of DAN! you can get from a mainstream MD, the worst can kill your child.

  19. Kathy N July 30, 2006 at 06:40 #

    Joesph–Sorry I didn’t include this in the prior post. I started writing that post a long time ago and then finally got back to finishing it a few minutes ago. Anyway, you wrote:

    “There is considerable evidence that autistics have substantial neuroanatomical differences compared to non-autistics (e.g. brain size, neuron size, neuron density, grey and white matter distribution, and so on).”

    Hmmm…it’s late and I’m too tired to search for it right now, but I think sometime in the past few months I read a refutation of the rationale for using these brain differences as proof that autistics were never and could never be NT. I think that the paper (or book) I read said that the brain tissues examined were all from adult autistics by way of autopsy. The point made in the document was something along these lines: After years of continuous damage, the structures of the brains would most certainly have changed from their original state. I’m sure that I’m not doing justice to the refutation, but that’s the best I can do at this late hour. 🙂

    Here’s something I do know for sure…my son is beginning to “get” humor. He will change the words to a song I frequently sing to him to get me to laugh with him about it. (The song ends “a doodle-oodle-oodle, a doodle-oodle-oodle, a doodle-oodle-oodle-oo-oo, oh yeah.” He reverses the words and sings “Oh yeah, oh yeah, oh yeah, oh yeah, oh yeah, oh yeah, oh yeah, oh yeah, oh yeah, oh yeah-yeah, a doodle.”) His articulation has a long way to go, but I’m thrilled he is doing it. Five months ago, I was saying to my husband, “Will our son ever be able to say, “I love you,” in return when I put him in his crib for the night?” What a difference five months (and in our case, the GFCF diet) can make!

    One last thing…you wrote:

    “And the fact is that there are easily over 1000 anecdotal stories out there, if you count those that people keep to themselves.”

    Now YOU I would definitely trust to go on one of the biomed Yahoo groups with some objectivity and couth. Have you ever joined one of those groups and asked people to share their biomed experiences with you? It’s worth giving it a shot if you haven’t. I think you might be surprised by the numbers of people who will gladly tell you their success stories (as well as their trials and tribulationss) with biomed treatments.

    Have a good night,

    Kathy

  20. Kev July 30, 2006 at 06:58 #

    _”How long did you keep going with the GFCF diet and were you super careful about it when you did it (i.e., did you make sure to avoid cross-contamination and so forth)?”_

    We started it a few weeks after getting Megan’s diagnosis. Looking back now we did it for the wrong reasons. Meg had intermittent constipation and very occassionaly dihorrea but we thought at that time that doing the diet would ‘cure’ Meg. We didn’t realise that it doesn’t alter the core attributes of being autistic.

    We kept it up for a few weeks and yes, we were very careful at the time.

    _”Are you speaking to the diagnostic criteria in the DSM-IV—wait, I think you’re in Great Britain and I can’t remember the name of the equivalent document there, but you probably get my meaning).”_

    Yes and no. I think that the core attributes of autism run wider than the DSM and the DSM makes no mention of the documented advatages. But yes, in essence I believe a restricted diet can help a vast range of people but no I don’t believe being on it would mean someone would lose their diagnosis.

    _”I don’t believe I ever said or even implied that mercury/thimerosol/vaccines cause autism. I also don’t think I said or implied (I certainly hope I didn’t) that the results we’ve seen with the GFCF diet is validation for all of the other biomed ideas. What I said (to the best of my recollection—-I’m too lazy to scroll that far up and check right now) was that it’s the biomed folks who are suggesting that people try the GFCF diet. We’ve seen great results with the diet. It’s the biomed folks who suggest testing for and potentially treating for heavy metal poisoning. I don’t know if we’ll go the chelation route. What I do know is that I was very skeptical about the GFCF diet but it has panned out for us. Because of that, I’m willing to be more open-minded to what the biomed folks are saying, so I’m looking into other types of biomed treatments, just one of which is chelation. Okay, I probably didn’t word it exactly that way before, but that’s what I was getting at both then and now.”_

    What I responded to was this:

    _”I’m leaning toward the biomed point of view because I’ve seen really good results just from dietary measures.”_

    I take your point about your lack of indication regarding mercury but for all that, we both know that going down a DAN!-led biomed path will nine times out of ten revolve around metal poisoning and chelation.

    I’m not saying don’t see a DAN! doc – its your money – all I’m saying is go there very sceptically. One leading DAN! Doc apparently used to recommend exorcism for autism. Another one hospitalised a child for twelve days by poisoning them with huge doses of vitamins. Another one used to regularly lambast the evils of mercury in vaccines and also recommend ayurverdic treatment options – which contain mercury.

    They only use a tiny handful of expensive labs. The reason they don’t use mainstream labs is they say that these labs can’t detect the problem. This is bull. What sort of metal testing lab can’t detect metals? One ex-DAN! charges people $800 per hour to see his nurse. They are not self regulated, not all are actually doctors at all – anyone can be a DAN! – and they all follow a very single minded party line. Please take everything they say with a very large pinch of salt then research it all yourself.

  21. David N. Andrews BA-status, PgCertSpEd (pending) July 30, 2006 at 09:25 #

    Kathy: ” I can’t help but think back fondly to one of my favorite psychology professors who said that psychologists (and psychiatrists) are the most messed up people one could ever hope to find.”

    Sadly, on that one we can agree. Especially in Finland, where I live, that is pretty much the case.

  22. David N. Andrews BA-status, PgCertSpEd (pending) July 30, 2006 at 09:29 #

    Kathy: “Ban Me – Thanks for your kind words. Don’t worry about me, though. I had a good chuckle as I read through David’s post.”

    Be careful with SueM, Kathy. Her sole objective here is to cause and maintain trouble here. She has a record here of being an obnoxious person… she is more than willing to pick fights on threads about very sensitive topics (in fact, Kev L had to make a serious comment to her on that matter… for which she failed entirely to apologise, by the way!). Not someone you’d find any good in allying yourself with here.

    Kathy: “I now see that my concern was warranted based on your response to my request.”

    Was it? What is ‘rude’ or ‘uncouth’ about this statement: “You might wish to talk to the curebies about this and ask them to give a properly objective evaluation… they don’t, because they can’t.”

  23. Ruth July 30, 2006 at 13:33 #

    Kathy-

    Before we moved to St. Louis, I joined a MOFEAT listing. I learned which schools were the best-my daughter has wonderful special ed and mainstream teachers. The parents on that list were rude when I questioned anything biomed. Asking why magnetic clay should draw mercury when mercury isn’t attracted to magnetics (only nickel and iron are) got me no end of grief. No biomed has demonstrated how baths can draw anything out from the blood and tissues to the surface and out through the skin. I am a scientist (med chem and tox), so I can examine biomed pretty well. Most is smoke and mirrors. That is not rude, just fact. My exposure to DAN says they are dedicated to separate you from your money, just like diet quacks and the cream to increase bust size.
    What has worked for us is speech therapy, social stories, sensory OT (my daughter has problems with vestibular and proprioceptive systems), and taking her obsessions to constructive ends. She is still autistic, but has fewer meltdowns, has matured to the point where she can handle social interaction, and has found respect from classmates for her skills in math and computers. She will never be a social butterfly, but maybe she will be happy in a cubicle with a computer.

  24. andrea July 30, 2006 at 14:22 #

    One doesn’t need to be a social butterfly to be happy. The two NTs of our family are happy being such, and the two AS in our family are happy sharing our special interests with a few others who also do and otherwise puttering around on our computers. It’s still being happy, just expressed differently, and certainly doesn’t preclude being contentedly married et cetera.

    Every parent wants their children to grow up to be happy, relatively healthy adults. Being non-average or even disabled doesn’t preclude from that. Being “abnormal” is not the automatic crisis that some unimaginative or narrow-minded people paint it to be. It can in some ways be liberating, once you realise that trying to be “normal” all the time is simply stressful, and that focusing your energies on doing things in a more functional (if not more imaginative) way will still enable you to achieve what you need.

  25. Ban me... please July 30, 2006 at 14:42 #

    David wrote:

    “Be careful with SueM, Kathy. Her sole objective here is to cause and maintain trouble here. She has a record here of being an obnoxious person… she is more than willing to pick fights on threads about very sensitive topics (in fact, Kev L had to make a serious comment to her on that matter… for which she failed entirely to apologise, by the way!). Not someone you’d find any good in allying yourself with here”.

    I think that Kathy is smart enough to understand that things can get pretty heated around here, so I’m not too concerned about her truly believing that I am an abnoxious troublemaker. She can make up her own mind about that. As for Kev L having to “make a serious comment to her(me) on that matter…” What are you talking about? Don’t be so cryptic. Spell it out for me, David. You guys seem to think that you have the uperhand when it comes to being kind, considerate and well-meaning. I hate to break the news to you but many of you are the worst of the worst when it comes to being accepting. Sorry if that surprises you. How many well-meaning people like Kathy N. have to come to this site to try to open up discussions with you on these matters and then get forced out due to the nastiness here. The only reason that I still hang out around here is that I want to be around when the ground comes crumbling down around you. When you learn that hey, gee… mercury is really more neurotoxic than water? Crap, I wish I had listened to those biomed people… they’ve been telling me that for years.

  26. Ruth July 30, 2006 at 15:27 #

    Botulism is more toxic than thiomersal, but at FDA-determined doses, botulism is safely used by many (Botox). At doses given in vaccines, thiomersal is well below the no-effect dose, especially as Burbacher has shown how quickly ethyl mercury is excreted. DOSE MAKES THE POISON!

    I disagree with many things Maria says, but she is thoughtful and polite. She has never tried to pretend to be someone else. She gives references (to understate the case) and sticks to facts. Many of us here are literal-minded and like to stick to data. My daughters improvement is not a controlled experiment, but studies have shown some kids will improve without intervention.

  27. Joseph July 30, 2006 at 16:03 #

    I think that the paper (or book) I read said that the brain tissues examined were all from adult autistics by way of autopsy.

    That might be true of studies that actually look at brain tissue — and I agree there are some methodological questions regarding those types of studies. But there are studies that use MRI, for example. See this, this, this, this, and this.

    Also, there’s no evidence of brain damage that accumulates as time goes by as you suggest.

  28. Joseph July 30, 2006 at 16:12 #

    Here’s something I do know for sure…my son is beginning to “get” humor. He will change the words to a song I frequently sing to him to get me to laugh with him about it. (The song ends “a doodle-oodle-oodle, a doodle-oodle-oodle, a doodle-oodle-oodle-oo-oo, oh yeah.” He reverses the words and sings “Oh yeah, oh yeah, oh yeah, oh yeah, oh yeah, oh yeah, oh yeah, oh yeah, oh yeah, oh yeah-yeah, a doodle.”) His articulation has a long way to go, but I’m thrilled he is doing it. Five months ago, I was saying to my husband, “Will our son ever be able to say, “I love you,” in return when I put him in his crib for the night?” What a difference five months (and in our case, the GFCF diet) can make!

    That, you must excuse me, is plain silly. Doctors and the information on the internet are partly to blame because they propagate myths such as “autistics can’t understand humor” or “autistics can’t love”. My son who is 5 now and quite autistic says “ee-ya-u” (means “I love you”). There are things he finds quite funny when he’s watching TV. It’s true that an autistic may be the last to understand certain types of jokes. This is different to not having humor. It’s true than an autistic may avoid pursuing romantic relationships. This is different to never falling in love.

  29. clone3g July 30, 2006 at 16:36 #

    María Luján said: Research points to another direction
    I disagree. I’m not saying food derived peptides can’t pass through the intestinal barrier when integrity of said barrier is less than ideal.

    I’m saying that there is no evidence to support the hypothesis where autistic children have more permeable guts allowing food peptides to partially degrade or self-assemble into opiate like molecules which can resist DPPIV proteolysis. pass through the BBB, bind with opiate receptors, cause a person to act autistic, and still manage to be excreted in the urine at detectable levels.

    The opioid excess hypothesis arose from the notion that autism is caused by mercury poisoning therefore the only way to explain anecdotal reports of improvement through dietary restriction is to conjure a Geier-esque scenario whereby key enzymes are indefinitely inhibited by mercury interfering with the ability to break down certain peptides…

    20 GOTO 10

  30. Joseph July 30, 2006 at 16:47 #

    I think you might be surprised by the numbers of people who will gladly tell you their success stories (as well as their trials and tribulationss) with biomed treatments.

    I’m familiar with the stories. They abound. I’m not doubting they exist. I noted that in my latest post. I’d expect that a large portion of young autistic children currently diagnosed will pass for normal when they are adults. This can be inferred from past studies on outcome, and the fact that most kids diagnosed these days are for sure mildly autistic in comparison to autistic kids from the outcome studies.

    Let me refer you to a few such anecdotes:

    Raun Kaufman (cured with Son-Rise, a sort of acceptance therapy)

    Max (cured with Carcinosin, a homeopathic remedy)

    Parker Beck (recovered with Secretin)

    Child cured with some sort of holding therapy and discipline.

    Roll Call of assorted therapies believed to be successful (includes one that says “a regular nursery school with a shadow”).

  31. clone3g July 30, 2006 at 16:48 #

    Ban Common Sue said: How many well-meaning people like Kathy N. have to come to this site to try to open up discussions with you on these matters and then get forced out due to the nastiness here.

    The difference between Kathy and the other “well-meaning people” you refer to is that Kathy is polite and open to other points of view. Maria, David H., and several others also seems to be open to intelligent discussion (to some degree) but every other well-meaning commenter you admire and defend has come here to educate the silly “NDs.”

    Come here stating unproven hypotheses as fact and you are sure to receive a few discourteous replies.

    You get what you give.

  32. GMAC July 30, 2006 at 17:16 #

    Ruth and Andrea-
    I completely agree with what you are saying. It sounds like you have done your absolute best with your children and it shows in the results.
    As for the reference to “being happy in a cubicle with a computer” I confess that statement gave me the giggles. Many people ARE deliriously happy in a cubicle. They are bright, inquisitive and social in their own ways, not some cookie cutter defined way. Does that make sense? My (maybe?) NT husband is a complete genius with computers, and likes the predictability of them. When I took programming courses, one of the first things I learned is that computers do exactly what we tell them to do; if there is an error, it is a human error. Maybe this is why so many auties prefer the computer variety of company. Computers do what you tell them, and if there is a miscommunication it is a logical one. NTs are far from logical much of the time, and don’t always do what you tell them…
    Joseph-
    Your son sounds like a sweet boy. I agree that the sense of humor is there, it just may be a little delayed or off-center. Our family has a twisted sense of humor, as I suspect yours may. Feel free to correct me if I am wrong, but I mean it as an absolute compliment. As for love, well, love can be expressed with or without words. When one of my daughters was younger, she came up and gazed at me and said, “Do you know what I’m doing?” I said I couldn’t tell, so she enlightened me. She said, “I’m loving you with my eyes.”
    Without humor and love, there is nothing. You have both with your son, and I would love to hear more about him. smooches to all the great kids out there.

  33. Kev July 30, 2006 at 17:25 #

    Sue, as others have said, its quite easy to disagree and maintain courtesy. I disagree with Maria on occasion but I have the utmost respect for her. Same goes for David H. So far, Kathy seems open to debate – why would I ‘force her out’?

    I’m not sure who these people are you are referring to who’ve been ‘forced out’ but its really very simple. Be courteous – receive courtesy. Be abusive – receive abuse. And then a suspension and if you still can’t grow up – a ban. I have three kids and no desire (or time) to parent you too.

  34. María Luján July 30, 2006 at 19:13 #

    Hi clone3g
    You said
    I’m saying that there is no evidence to support the hypothesis where autistic children have more permeable guts allowing food peptides to partially degrade or self-assemble into opiate like molecules which can resist DPPIV proteolysis. pass through the BBB, bind with opiate receptors, cause a person to act autistic, and still manage to be excreted in the urine at detectable levels.

    I have problems with the way many researchers have presented these ideas as FACTS, proven facts and also with absolutes statements in the sense: Autism is CAUSED by opioids and so on. BUT this is different FOR ME, IMHO, that saying that all has been studied in the field. That a different approach must be considered I agree, that there are a lot of confussion, I agree, that there are contradictory statements I agree . But this is different to say that ALL is wrong. I think that we need more studies to know what is wrong and what is useful or can be at the level of improvement of life´s quality in some autistic children/teens/adults related at an individual level to the leaky gut/food allergies/ impact in behaviors.

    The opioid excess hypothesis arose from the no
    tion that autism is caused by mercury poisoning therefore the only way to explain anecdotal reports of improvement through dietary restriction is to conjure a Geier-esque scenario whereby key enzymes are indefinitely inhibited by mercury interfering with the ability to break down certain peptides…

    I disagree in this point. Clone, respectfully this is a personal interpretation of yours but mine is different. You can have celiac disease and leaky gut and nothing to do with Hg poisoning. Again, I am surprised that , even if there is a group that think in terms of CAUSES for autism (HM, vaccines, etc, exogenous causes) many of us- and I have insisted almost in every post here or in other blogs to see these as insults. CAUSE, final CAUSE is genetics.
    You can have for me or one or the other or two or all ( talking about celiac disease, milk allergy, leaky gut HM poisoning)- and other medical conditions-but all must be correctly diagnosed. If two or more are present some correlation can be present in terms of impact of one in another but further research is needed about the impact of HM in GI issues in autistic people IF- and emphasis in IF- HM poisoning is adequately confirmed . BTW, celiac disease and other medical conditions have not been totally elucidated. What I am trying to point out is that the fact that some people- even some doctors – present this way the hypothesis do not imply that every of us doing biomedical agree. I disagree with so many things that it is long to mention, related to DAN! approach to treatments and tests and also with mainstreamed medicine in general. BUT this is different to say that ALL is wrong, in advance. I have found, as I mentioned many times, a lot of medical conditions when I searched locally for them, based on anecdotical evidence from DAN! and other parents. What I did after in terms of what tests to choose, where, what interpretation and what to do after in terms of treatments is a totally different world and my prerogative and my responsability (our) also.
    About the scenario I can mention that there are specific tests to diagnose celiac disease, milk allergy and also leaky gut as a possibility- available in my local lab.
    I will try to present you some published papers on the field of
    -Importance of DPPIV, disaccharidases, etc.impact in CNS when expressed in gut and in lymphocites (for example as CD26)
    -I mentioned about leaky gut above
    -impact of celiac disease and milk allergy in behaviors.

    You can find in these links the related links, that I found very interesting
    “Cell-surface expression of CD25, CD26, and CD30 by allergen-specific T cells is intrinsically different in cow’s milk allergy.”:http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?itool=abstractplus&db=pubmed&cmd=Retrieve&dopt=abstractplus&list_uids=11112900
    Please see the first link. The previous one did not work for the specific paper I cited
    “Circulating levels of soluble CD26 are associated with phobic anxiety in women.”:http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16797816&query_hl=3&itool=pubmed_docsum

    “CD26/dipeptidyl peptidase IV differentially regulates the chemotaxis of T cells and monocytes toward RANTES: possible mechanism for the switch from innate to acquired immune response”:http://intimm.oxfordjournals.org/cgi/content/full/11/3/417
    “Behavioral characterization of CD26 deficient mice in animal tests of anxiety and antidepressant-like activity.”:http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16712972&query_hl=3&itool=pubmed_docsum

    “T-cell activation via CD26 and caveolin-1 in rheumatoid synovium.”:http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16622717&query_hl=3&itool=pubmed_docsum

    Seeming immune dysfunction in ASD children important, reactions can be much more stronger.

    Animal models of effects of reductions of DPPIV
    “Extreme reduction of dipeptidyl peptidase IV activity in F344 rat substrains is associated with various behavioral differences”:http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=14568317&query_hl=11&itool=pubmed_docsum

    “CD26 expression determines lung metastasis in mutant F344 rats: involvement of NK cell function and soluble CD26”:http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?itool=abstractplus&db=pubmed&cmd=Retrieve&dopt=abstractplus&list_uids=14627126
    About endogenous opioids
    Endogenous opioids and reward • ARTICLE
    European Journal of Pharmacology, Volume 405, Issues 1-3, 29 September 2000, Pages 89-101
    Jan M. Van Ree, Raymond J. M. Niesink, Leo Van Wolfswinkel, Nick F. Ramsey, Marleen (L. ) M. W. Kornet, Wouter R. Van Furth, Louk J. M. J. Vanderschuren, Mirjam A. F. M. Gerrits and Caroline L. Van den Berg
    Abstract
    The discovery of endogenous opioids has markedly influenced the research on the biology of addiction and reward brain processes. Evidence has been presented that these brain substances modulate brain stimulation reward, self-administration of different drugs of abuse, sexual behaviour and social behaviour. There appears to be two different domains in which endogenous ioids, present in separate and distinct brain regions, are involved. One is related to the modulation of incentive motivational processes and the other to the performance of certain behaviours. It is concluded that endogenous opioidsy play a role in the vulnerability to certain diseases, such as addiction and autism,bu t also when the disease is present, such as alcoholism.

    “Neurochemical correlates of autistic disorder: A review of the literature”:http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16002261&query_hl=15&itool=pubmed_docsum.

    This manuscript points to endogenous opioids but the supposed trouble is with the exogenous proteins that are converted in opioids because of altered absorption.

    As you can see, CD26 has a lot of other functions and alterations in expression can have a lot of different impact depending on individual, apparently.

    You can find here
    “Autism and diet”:http://www.kevinleitch.co.uk/forum/viewtopic.php?id=40
    more discussed papers about in an exchange of ideas I have in Kev´s forum with Steve Z.
    María Luján

  35. clone3g July 30, 2006 at 23:21 #

    ML: I disagree in this point. Clone, respectfully this is a personal interpretation of yours but mine is different. You can have celiac disease and leaky gut and nothing to do with Hg poisoning.

    No, it is not a personal interpretatation of mine. That was (and may still be) the hypothesis suggested by the DAN! clan.

    You can have celiac disease and leaky gut and nothing to do with Hg poisoning.

    Precisely why I said nothing about either condition. I also said nothing about the effects or potential effects decreased DPPIV/CD26 activity may have on ones health.

    This is what I did say:
    “There is no evidence to support the hypothesis where autistic children have more permeable guts allowing food peptides to partially degrade or self-assemble into opiate like molecules which can resist DPPIV proteolysis, pass through the BBB, bind with opiate receptors, cause a person to act autistic, and still manage to be excreted in the urine at detectable levels.”

    Better yet make that undetectable levels since most labs aren’t able to find these peptides in autistic’s urine.

    Unless you can prove me wrong on any or all of these points then I’m afraid I have missed your point.

  36. María Luján July 30, 2006 at 23:37 #

    Hi clone 3g
    My point is that the the fact that contradictory results arose, looking at the problem with a wide scientific approach can be assigned
    1- The tests were ill done
    2- The selected patients with ASD have not the problem of leaky gut
    3-The pattern of excretion was not considered-if any
    Therefore instead of consider 1 and to determine the problem solved with some published evidence on a very few number of autistic patients, I do think that a different approach is the correct one to answer the question. The fact that SOME published papers did not find peptides in urine does not imply that the theory is wrong, for sure. The fact that milk allergy affects CD26 expression is important to me. The fact that leaky gut is possible in GI issues and related to pediatric conditions has its place in the general picture. These are my points ( not only one)
    Only in patients with leaky gut correctly diagnosed AND with biomarkers of celiac disease these kind of studies would be providing some clue about if the peptides can have some impact in symptomatology. Without a careful selection of the right autistic patients, why an autistic patient selected without a criteria is going to show the problem? The problem I have are
    1- to consider that the peptides ARE THE CAUSE of autism
    2-to consider that 4/5 or more studies without carefully selected patients- that can/can not show the problem- prove for sure the negative. Not for me.
    For me , in these studies the question is wrong done. for me the question must be done in the sense
    Does autistic children with celiac disease and milk allergy and leaky gut evidence of peptides in urine? Or at least, if the test for leaky gut is difficult to perform, Does autistic children with celiac disease and milk allergy show peptides in urine?
    María Luján

  37. Ban me... please July 31, 2006 at 00:39 #

    “Sue, as others have said, its quite easy to disagree and maintain courtesy”.

    Why don’t you do it then? 🙂 — that’s a smiley face.

  38. Kev July 31, 2006 at 04:33 #

    With you? Various reasons. Firstly, from your very first comment on this blog you showed yourself to be sneering, condescending, rude and opinionated. At no point have you changed that style despite requests, warnings and even a suspension so as far as you’re concerned I have no inclination to continue trying.

    Secondly, this thread is a perfect example of what happens whenever you’re around. We start off discussing something and then you turn up and all of a sudden we’re discussing Sue M. I’m bored of indulging your unrelenting desire to talk about you. Even your current username has the word ‘me’ in it.

  39. Mike McCarron July 31, 2006 at 05:23 #

    Kathy,

    I sincerely hope you find these few additional observations useful. I am not a doctor or any other type of clinical person, just a well intentioned person willing to share a perspective.

    I have never viewed diet as a “bio-med” treatment. If someone can not handle a type of food, don’t feed it to them. I think that “bio-med” enters the picture when one begins to treat a stomach condition. Here the range of treatments can get pretty wide; from mild supplements to radical. You may need help and multiple opinions in evaluating just how much and how quickly any ingredient is going to go into the child’s body and possible side effects. I think the further out on the treatment spectrum you go the more careful one needs to be. You mentioned getting with a doctor. Try two if at all possible.

    Also, depending upon where you live, ask for the release forms you will be asked to sign prior to treatment. Ask for these up front and read then closely. In the U.S. medical malpractice law suits have resulted in many doctors having these prepared by their attorney, they are very informative. Basically, the release forms take you away from the general discussion of how wonderful a plan of treatment may be and get you down to what possible results and side effects may occur for which the doctor does not want to be held accountable. It is not just paper work. I view these as the don’t blame me documents, read them and reflect upon them.

    Another thing to check on is “could” the procedure be performed in a hospital. Don’t listen to the statement “we do it in the office to contain cost”. While that may well be true, the real question is would the hospital allow the plan of treatment within their facility, even in an outpatient setting? A no answer should raise a flag. It may be worth finding out why they wouldn’t allow it.

    I hope some of these thoughts prove useful to you.

  40. andrea August 1, 2006 at 00:14 #

    My brain has been MRI’ed twice, by diferent hospital staff in different cities. Everything checked out fine both times. There’s nothing rotting in here (taps parietal lobe). Not even from decadal tetanus booster shots, annual flu shots, dental fillings, sushi consumption et cetera.

  41. andrea August 1, 2006 at 02:33 #

    … and if the child isn’t “cured” or “recovered”, then what?

    (sorry, the word “recovered” always reminds me of reupholstering)

  42. Ban me... please August 1, 2006 at 02:53 #

    “So, the child should be cured/recovered by this upcoming Spring of ‘07. End of story….”

    I certainly won’t speak to that… The point is not moot however. My point (at that time) was that Kev had lied about what JB said. That remains true.

  43. Brian Deer August 1, 2006 at 06:24 #

    Actually, the leaky gut, opiod excess blah blah stuff was invented for the purpose of UK litigation. Since there was no way of explaining how MMR could cause autism, they made up this convoluted mechanism, in the apparent belief that, although it may not convince a judge (none are THAT dumb), it would at least convince the legal funders to cough up millions for lawyers and their “experts”. That litigation has now collapsed, but leaky gut/opiod excess continues as a nice little earner on the testing/products market.

  44. Kev August 1, 2006 at 11:38 #

    Once again Sue, you’re quick with the silly accusations. I didn’t lie at all. I put forward my opinion, based on what I’d read from JB himself. I didn’t lie and say JB had claimed Jamie was recovered. I said that I was curious as to what a recovered child _would_ be like (‘would’ being a reference to the future in case you have troubles with tenses).

    Once again, you display an incredible arrogance in _yet again_ trying to make this thread about you. It’s not. You don’t set the agenda here and I’m sick to death of you spraying your irrelevancies around like a badly trained dog. You constantly resort to sneering and scoffing to try and cover up for the fact that you have little to no idea what you’re talking about. Your claim that you’re offended by lies is hilarious given the fact that you regularly try and play down the fact that David Kirby lied regarding autism numbers. I guess that’s different.

    Here’s another point to ponder Sue. If JB didn’t want people talking about his situation then maybe agreeing to an interview with a member of the press was a bad idea.

    _”A suspension? You mean when you banned me for being off-topic?”_

    Suspension: a temporary lifting of posting priveledges. I told you in June you were being suspended until the beginning of July. That’s what happened.

    Ban: a permanent lifting of posting priveledges.

    Internalise these concepts for future reference Sue. Your one remaining chance starts here. Feel free to talk about the subject under discussion. Do not feel free to keep making everything about how hard done by poor little old Sue M is.

  45. María Luján August 1, 2006 at 12:04 #

    Hi
    I found these citations

    “Gastrointestinal symptoms and intestinal disaccharidase activities in children with autism,” Rafail Kushak, Harland Winter, Nathan Farber, and Timothy Buie, Abstract of presentation to the North American Society of Pediatric Gastroenterology, Hepatology, and Nutrition, Annual Meeting, October 20-22, 2005, Salt Lake City, Utah.

    This journal ( Journal of Pediatric Gastroenterology and Nutrition) has an impact factor of 1.764.
    “Gastrointestinal symptoms and intestinal disaccharidase activities in children with autism,” Rafail Kushak, Harland Winter, Nathan Farber, and Timothy Buie, Journal of Pediatric Gastroenterology and Nutrition, Vol. 41, No.4, October 2005.

    “Harvard Study”:http://www.autismcanada.org/Research
    /HarvardStudy.htm

    Some 2006 manuscripts about the role of disaccharidases:

    “Intestinal sugar transport”:http://www.ncbi.nlm.nih.gov/entrez/
    query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16586532&query_hl=8&itool=pubmed_docsum

    “Altered folding, turnover, and polarized sorting act in concert to define a novel pathomechanism of congenital sucrase-isomaltase deficiency”:http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids
    =16543230&query_hl=8&itool=pubmed_docsum

    “Disaccharide digestion: clinical and molecular aspects”:
    http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16527688&query_hl=8&itool=pubmed_docsum

    María Luján

  46. Joseph August 1, 2006 at 15:22 #

    This gives the false assumption that you have a clue about J.B.’s son’s original condition or his progression.

    J.B.’s son is 3 and has a vocabulary of 100 words. A generation back that would’ve been called “normal”. (I keep thinking about that, because the medicalization of a child who’s just a little different is shocking to me).

  47. HN August 1, 2006 at 17:46 #

    SIXTEEN MONTHS ! ? ! ?

    And here I was having “helpful” people tell me that 3 year old my son was going to be okay even though he had less than a dozen poorly enunciated single-syllable approximations for “words”!

    Oh, good grief.

    Fortunately, our family doctor was on the ball and referred us to speech/language therapy when he was 2 years 3 months old. The child was also seen by a child neurologist who prescribed the speech therapy and told us the he was NOT autistic, but did test for Landau Kleffner Syndrom (negative). (autism is NOT the only reason for speech and language problems… our son had a history of seizures, he is almost 18 and still has some serious learning disabilities, but it is helped that he does not have ADD).

    I spent many years on a listserv where the moderators were always assuring newbies that any age before 3 years was too young for any definite diagnosis. It seems to me that those who were trying to medicalize their kids before age 2 are showing a bit of “Munchausen by Proxy”.

  48. Ban me... please August 1, 2006 at 19:37 #

    Kev wrote:

    “I put forward my opinion, based on what I’d read from JB himself”.

    Unfortunately your “opinion” was based upon facts which you could not back up at all. In fact, as it turned out you were proven wrong. Remember?

    Whatever. I’m not going to start analyzing JB’s son progress. If he wants to that’s fine.

  49. Kev August 1, 2006 at 20:10 #

    And there endeth the last chance of Sue M. Just couldn’t keep to the subject under discussion could you? Or keep yourself out of it.

    No, I don’t remember being proven wrong but you’re right to say my opinion was based on facts. However, your opportunity to participate further has just expired. Please go and troll someone else’s blog to get your attention fix.

  50. GMAC August 2, 2006 at 17:31 #

    HN,
    Funny you should mention Munchausen by Proxy. I have wondered about some of the more visible parents displaying their “nearly recovered” or “almost free of autistic symptoms” kids at every available media opportunity and wondered the same thing. But it’s not enough for them to parade their child in front of cameras, oh no. They have to keep chelating, HBOTing, Lupron-ing, and supplementing their kids to the nth degree to justify the progress. I really do worry about some kids’ health. But then, I’ve been labelled a “lazy” parent because I don’t follow the same paths as the attention-seekers. So be it. The only time my children go to the doc is when they are really sick, which isn’t very often.

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