Katie Wright and Autism Speaks – woo confirmed

29 Mar

For the last few weeks the subject of ire on the EoH maillist has been Autism Speaks, they’ve been the subject of some very nasty descriptions indeed. The reason is that the EoHers knew that Katie Wright, daughter of the owners of Autism Speaks, was taking her son Christian to a DAN! doctor and yet Autism Speaks were keeping this quiet.

Well, as blogged by David Kirby, Katie Wright has now confirmed that Christian is seeing a DAN! doctor (lets hope its not one of the paedophiles or Scientologists) and has gone ‘on the record’ as stating she believes vaccines caused Christians autism.

The mercury militia and David Kirby report this:

Many in the upper echelons of Autism Speaks have rejected any environmental hypothesis and insisted that autism is purely a genetic disorder — though Bob and Suzanne Wright (and the organization itself) remain officially neutral on this crucial question.

But now, Christian is getting better, and that wonderful news could change everything.

Well, firstly, I can’t recall anyone from Autism Speaks insisting that autism is purely a genetic disorder. If they did I think they’d be just about alone. Secondly, ‘Chrisitan is getting better’. Really? How is that described exactly?

“He’s definitely getting better,” Katie told me by phone. “He was a very sick kid, with an extended gut and inflamed intestines. We couldn’t do anything until we got that under control.” But once Christian started to improve physically, she said, he also began to get better emotionally, mentally and cognitively.

When Christian’s gut improved, his parents began trying other, still-unproven treatments like dietary changes (no wheat or dairy) chelation therapy (removal of heavy metals from the body) and methyl B-12, which could help restore a critical process called methylation – a needed tool for detoxification and proper nerve function that is apparently deficient in some autistic children.

“Christian is speaking now, though only when prompted,” Katie told me. “His eye contact is returning, and his crying and tantrums have subsided.” And she said, “His ability to attend has returned. Now he can sit and do his lessons and learn, whereas before he would just lie down and scream in pain, because his abdomen hurt so much. But he still has a long way to go.”

Perhaps most heartening to Katie is that Christian can now tolerate being in close contact with his brother, something that used to send the boy into screaming fits of anxiety.

Well I too am glad that Christian doesn’t have these gut problems anymore. But these aren’t autism and have nothing to do with autism. My daughter, who is also autistic, has never had an ‘extended gut and inflamed inststines’. Thats not to downplay Christian’s problems but its simply not realistic to equate these things with autism.

Christian (who is 5 and yet described by Kirby as a ‘toddler’) displays very similar behaviours to Meg at five (and at three) – she didn’t speak at all, she struggled with eye contact and she had big meltdowns. The thing she has in common with Christian is that their changes have occurred as they have grown older.

Kirby goes on to say:

So how will some Autism Speaks officials react to Katie’s statements? They could fall back on two recent, but highly inconclusive studies that support the autism-is-genetic paradigm, and continue to reject the environmental hypothesis. But I wouldn’t bet on it.

I’m unsure exactly what two recent genetic studies Kirby is talking about as he doesn’t name them but if they are written by decent scientists then I highly doubt they have written an off-the-cuff rejection of an environmental aspect to autism. If anyone does know what studies Kirby is referring to please say so I can check for myself. I find double checking Kirby’s words often reveals interesting things!

But hsi question is a good one. How _will_ Autism Speaks react? They are a ‘house divided’. They have the scientific teams that they inherited from NAAR and they have their ‘in house’ members that are media people. Will they go for the media or for the science? It seems that Kirby and the mercury militia are in no doubt about which way they _should_ go – they want a media driven Autism Speaks. An organisation that abandons science for woo.

It should be noted that the mercury militia are very, very good at media manipulation. From Brad Handley’s full page ads to Katie Wrights levering of Kevin Barry to get onboard Autism Speaks and of course, David Kirby’s fact free and often hilarious debating points. These are not people who let a media chance go unexplored. However, they cannot force science to show something that it does not.

92 Responses to “Katie Wright and Autism Speaks – woo confirmed”

  1. daedalus2u April 2, 2007 at 20:56 #

    I think it truncated my post.

    A biofilm in vivo produces NO promptly (

  2. notmercury April 2, 2007 at 22:55 #

    I think something following your paren ( was recognized as an HTML paragraph break.

    Daedalus, I don’t mean to throw the baby out with the bathwater but I worry that many of your opinions are presented with a level of confidence that approaches certainty.

    Though I personally find many of your ideas plausible and intriguing, I am not convinced that your ball of wax hypothesis manages to stay aloft under the bright glare of daylight.

  3. Friend in California April 2, 2007 at 23:08 #

    I apologize in advance, Daedalus, for my continuing skepticism on this issue. I can think of numerous alternative explanations for the “epidemiology” you are alluding to. The scientific method requires ruling out alternative explanations, and based on what (little) I have gleaned from your assumptions to date, I remain absolutely unconvinced that you have made significant efforts to consider these. You also are making statements such as

    …being associated with low NO, are virtually unknown in the rural undeveloped world, including obesity, diabetes, heart disease, liver failure, kidney failure, allergies, autoimmune disorders.

    Though you (notably) leave autism off this specific list, you have certainly included it in the discussion. But it is my understanding that prevalence of autism rates is fairly evenly distributed throughout all regional, cultural, and socioeconomic strata worldwide.
    Which leads me to a comment you have made on your blog which gives me pause…

    Competing financial interest: I am working on researching and commercializing products using skin resident commensal autotrophic ammonia oxidizing bacteria to naturally supply basal NO under normal physiological control via sweating to prevent and treat a number of disorders, including ASDs. Patents issued and applied for.

    Unless you can bring some more scientific findings to bear on this issue, I would strongly encourage you to think twice about trying to introduce a so-called “cure” to the autism “market”. These are real people and real families you are dealing with here, Daedalus. Yet another attempt to sell a product, if that product indeed has the lack of clinical evidence and proof of safety that I am beginning to suspect yours does, would not be a boon to autistic people and those who love them. If I am completely off-base here, tell me. Otherwise, I suggest you consider all possible outcomes – positive and negative – on your quest for a “cure”.

  4. Friend in California April 2, 2007 at 23:19 #

    Daedalus –
    I lost a post, too, so I’ll just redo it with the “short version”.

    On your blog, you have written:
    “Competing financial interest: I am working on researching and commercializing products using skin resident commensal autotrophic ammonia oxidizing bacteria to naturally supply basal NO under normal physiological control via sweating to prevent and treat a number of disorders, including ASDs. Patents issued and applied for.”
    This gives me pause. I sincerely hope that the “leap” you are making from your hypothesis to marketing a “cure” for autism is something you will step lightly on. As you have already applied for patents, I am concerned you will plow forward with the marketing of your skin-resident bacteria (seriously?) as a cure for autism.
    I urge you to consider all possible outcomes of this, many of which can very negatively impact autistic people and those who love them. Without proper clinical testing and rigorous safety reviews, no one has any business adding yet another “alternative” biomedical treatment to the appalling array already in existence.

  5. daedalus2u April 2, 2007 at 23:22 #

    It did trucate. I attempted to use the “less than sign”, which it didn’t like.

    A biofilm in vivo produces NO promptly (less than 1 minute) upon addition of ammonia. Some of the NO is absorbed into the skin (where I think it forms S-nitrosothiols in the external 100 microns or so which is perfused by plasma, but which contains no hemoglobin). I have measured NO production by these bacteria in vivo, coincident with a physiological effect known to be mediated by NO on multiple occasions (but in only 1 subject).

    I think that the “reason” for non-thermal sweating is to provide substrate for these bacteria to supply NO/nitrite to the body. I also think that the “reason” we have hair, is to provide a suitable niche for these bacteria. I can think of no other reason for underarm hair (certainly not to keep anything warm), which happens to be very close to lymph nodes, which require NO and nitrite for proper function.

  6. daedalus2u April 3, 2007 at 00:34 #

    Believe me, I am extremely cognizent of the potential harm that unproven “treatments” or “experiments” can do. I am being extremely careful in my research, and in the claims I have made, and in how I am proceeding. I am on the spectrum myself. I started my NO research before I knew I was on the spectrum. The only reason that I started doing research on ASDs was because my Asperger’s got better, a lot better.

    I have been using this on myself for over 5 years now. I have been actively researching the connections to ASDs for 3 or 4 (since I realized I was on the spectrum). I haven’t jumped to try and sell this, or lie to people about what I have, or what it will do for them. I am perfectly prepared to be wrong, but I don’t think I am, because I have read an extremely large amount of the NO and ASD literature. I am not quite hyperlexic. I can read (and understood) dozens of papers in an evening. As far as I can tell, everything in the literature is consistent with my hypothesis (after discarding the stuff that is wrong).

    I have been following the mercury/vaccine stuff very carefully, and have read virtually everything I could on it. There is no comparison between what I am doing and the fraud that is being committed by those quacks.

    So far, the only ASD individual that has used this is me. I would like to get a clinical trial going, but I don’t have a clinic or an IRB. I think the “risks” are near zero. But I only want a trial to go forward with everyone involved completely aware of every possible risk, even those that are extremely unlikely, or even impossible.

    I don’t really consider this to be a medical “treatment” or “intervention” per se, any more than a nutritious diet, or moderate exercise, or sufficient rest is a medical “treatment” or “intervention”. They are normal components of a healthy lifestyle. I think in time, it will be recognized that the proper surface biofilm of these bacteria is also a normal part of a healthy lifestyle.

    What are the “risks” of a nutritious diet, moderate exercise and sufficient rest? There may be “side effects”, but I don’t think there are any “adverse side effects”, or “risks”. People may disagree on that. I would be happy to discuss that with an IRB.

    I very much recognize that “cure” means different things to the ASD and to the NT communities. What I have has not made me “Asperger-free”. I can still enjoy playing minesweeper for 10 hours straight. There is no way that I could “pass” for NT. But I am much less anxious, my mood is a lot better, I am more functional in many ways. I think that every ASD would “like” the changes that my stuff produces. I think that many parents would “like” the changes that my stuff would produce in their ASD children because it will make them happier, and lead richer, more fullfilling lives as the ASD individuall sees it. I don’t think that my “cure” should be imposed on anyone who doesn’t “want” it.

    I think that some NTs won’t “like” what this does to ASDs, because it will make them less susceptible to bullying. I think that many NTs don’t appreciate how important bullying is in their interactions with other NTs and with ASDs (think of John Best for example, his only way of interacting is via bullying). I don’t think the “curebie” parents will “like it” because it won’t turn their children into the “Stepford children” that they want. What I think it will do is make ASDs more what the ASDs want to be.

    As I understand it, having a biofilm of these bacteria was how our ancestors evolved, back 5, 10, 50, even 100 million years. Our physiology has come to need these bacteria, and it suffers when we don’t have them. The loss of them mimics the effects of “stress”, and invokes all the stress compensatory pathways, one of which I think is the ASD phenotype. I think all the other degenerative diseases of the developed world are also the consequences of overactive stress responses.

    http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12070451&query_hl=1&itool=pubmed_DocSum

    http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12601303&query_hl=1&itool=pubmed_DocSum

    http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16369463&query_hl=1&itool=pubmed_docsum

    The mechanisms behind the “relaxation response” work because they cause the release of NO. Raising the level of NO with my bacteria rolls back the stress setpoint. It reduces the stress response to a given stressor. It does so without any “doping”, or cognitive impairment.

    One way to discribe it is that it increases the effectiveness of rest. It does so by restoring the “natural” setpoint of the physiological processes that are activated during rest.

    I am still working alone in ASDs. I have tried to interest clinicians, but they don’t have the background to understand what I am saying, and in my ASD way, I can’t explain it to them in the few minutes they have before they glaze over and think I am wacko and grandiose for thinking I can cure essentially every degenerative disease.

    I have tried to publish, but keep being told I need a larger n. I can’t get research grants because I don’t have an institution that fits the profile, and I don’t have any credentials and what I am proposing is too “high risk”. What they “mean”, is not that it is risky for patients, rather it is so “far out” that if it fails, the people who approved it will look foolish, something that NTs are extremely reluctant to even consider. Soil bacteria preventing disease? Who has heard of that? No one, because I discovered it.

    I think it would stop meltdowns in a day or so. Depending on severity. How things proceed from there are hard to judge. I think that everyone can appreciate that a large reduction in meltdowns would have beneficial effects that would increase over time. I only have an n of 1 to work with, and my understanding of ASDs is limited.

  7. daedalus2u April 3, 2007 at 00:50 #

    This doesn’t seem to be taking my post (which was quite long). I will post it as a blog.

  8. Ms. Clark April 3, 2007 at 06:27 #

    I don’t have a way to evaluate daedelus’s hypothesis, but I can say he’s a good guy. He has a good reputation among some of the members of the aut-advo list who remember him from a couple years ago.

  9. daedalus2u April 3, 2007 at 11:45 #

    Thank you Ms. Clark. I think I am a good person too, because being so is something I work at.

    As I have attempted to get my hypothesis disseminated I have noticed two characteristic responses. ASD individuals tend to say “I don’t understand it enough to evaluate it” (as Ms. Clark has said). NTs tend to say “it can’t be right because (insert fallacious reason here)”.

    If it is wrong, show me where. If you can’t show me where it is wrong, your belief that it is wrong is not based on facts or logic, but on something else.

  10. Barbara J April 3, 2007 at 12:40 #

    Daedelus, I’m NT (mostly) and I think your hypothesis is fairly sound, although I don’t know enough to evaluate it.
    And I also believe you to be a good and honest scientist, and person.
    Also, I tried your bacteria, and I didn’t smell nasty. Not to me, anyway!
    All the best.

  11. Tom April 3, 2007 at 13:04 #

    Daedalus2u said, “If it is wrong, show me where. If you can’t show me where it is wrong, your belief that it is wrong is not based on facts or logic, but on something else.”

    It is hard to know whether your NO hypothesis has merit until you publish rigouous animal model and clinical trial data to test this hypothesis in ASDs and other diseases. The burden of proof is on you.

    Until then, no matter how nice you are, it remains unproven. And if this is all a prelude to begin marketing an unproven panacea, then your actions will speak much louder than your words and you will be met with rightful skepticism and in some cases rightful hostility.

    If you hadn’t noticed, this group believes strongly in the scientific method and there are more than a few incomplete steps in your work.

    I have watched well-meaning people market all manner of untested interventions and woo with a genuine belief that they have hit upon a universal biologic panacea. It has grown very, very old.

    Conduct the laboratory and clinical trial work and then come back to us when you are a billionaire for having cured mankind of all manner of disease and say, “I told you so.”

    In the meantime, I look forward to reading about your patenting and licensing agreements in the trade papers. Because all manner of VC and pharma/bio tech companies will be beating a path to your door.

  12. daedalus2u April 3, 2007 at 13:48 #

    I accept that the burden of “proof” is on me. But a lack of “proof” doesn’t make it wrong, just unproven. I would love to do the studies to “prove” it. But such studies require funding and resources which I do not have. It is a catch-22. I can’t get funding until I have the studies, and I can’t do the studies until I have the funding. I am slowly working my way up the scientific ladder of credibility, and am working closely with a very senior researcher in the NO field. But he is in the process of moving to the UK, which will set back our working together at least 6-8 months.

    I believe in the scientific method too, and that is what has gotten me as far as I have gotten. As someone with Asperger’s, the science stuff is easy for me, a simple extension of how I live my life every day. The interpersonal stuff of convincing NTs that they should fund this is what is difficult.

    I agree that many people have (falsely) claimed to have discovered a similar “universal biologic panacea”. But that says nothing at all about what I have discovered.

    Unfortunately it is not the case that VC and pharma/bio tech companies are beating a path to my door. They don’t invest in things that they do not understand. They invest in things that they do understand, like viagra knock-offs.

    Barbara, did you get the email I sent you about ATP? If not, I have the wrong email addess.

  13. daedalus2u April 3, 2007 at 15:07 #

    This thread dropping posts is very annoying.

    I accept that the burden of “proof” is on me, but until it is “proven”, it is not wrong, but unproven.

    I know that “proof” will require research. Research require funding and resources which I don’t currently have. Obtaining such funding requires research results. It is a catch-22. The senior NO researcher I am working with is moving his lab to another continent (because of funding issues). That has set back our work together over a year already. Realistically he won’t be able to do anything for another 6 months. The focus of his work is not ASDs, but NO/NOx systems biology. They are all related, so there is no stretch at all me working with him.

    I believe in the scientific method too, that is what has made me a successful inventor and scientist, and what has gotten me this far. As someone with Asperger’s, the science part is easy, a simple continuation of how I live my everyday life. The interpersonal stuff necessary to convince NTs that my ideas are worthwhile is much more difficult.

    Unfortunately VCs and pharmo/biotech companies are not beating a path to my door. They are in business to make money on things they understand, things like viagra knock-offs, things that are “sexy” to other NTs. They are not in the business of funding research that they do not understand. No agency is. My approach is considered to be “high risk”. What that “means”, is not that it is has the potential to harm any patients, but that it is so “far out” of the mainstream that if it is funded, and fails, then the NTs who funded it will look foolish. NTs can’t abide being thought of as foolish. So the peers who (don’t quite) understand NO physiology look to ASD experts, who look to NO experts, who look to ASD clinicians, who look to neurophysiologists, who look to geneticists. None of them understand enough pieces of the puzzle to see the big picture, even when it is explained to them.

    It is unfortunate that many people have (wrongly) marketed what they (falsely) believe to be a universal biologic panacea. It has made my efforts more difficult. The false idea that “mercury causes autism”, has really poisoned the field in terms of considering the real biologic correlations in ASD physiology.

    That was the reason I become knowledgable about mercury, not because there is any basis for effects in ASDs, but because the senior clinician I was talking too regarding ASDs was too enamoured with mercury to have the mental capacity to think of anything else.

    “Curing” ASDs is a tiny market compared to the rest of what my stuff is good for. It is important to me because I have suffered from the effects of ASDs for my entire life. I know what it is like to be bullied until one is suicidal. I know that many NTs are simply unable to stop bullying. I think my stuff will greatly reduce the effects of that bullying on ASDs.

    Barbara, did you get the stuff on ATP that I sent you? If not, I need your email address.

  14. daedalus2u April 3, 2007 at 15:10 #

    I can’t seem to post here.

    look for my reply at my blog

  15. Friend in California April 3, 2007 at 15:15 #

    Daedalus2u –
    In my comment I was not attempting to attack you personally. I was simply commenting that new “cures” cause me lots of anxiety.
    I did read your blog post, and thank you for your clarification on the issue.
    Tom’s comment above is pretty much how I view the issue. In your blog post you mentioned the difficulties you have in progressing through established research and clinical trial channels. While I wish you the best in your process, and understand and acknowledge the personal investment you have in the process, and appreciate the amount of time and work you have put into the process to date, none of these things excuse you from the responsibilities that ethical research and development practices entail. Having read your blog comments, I feel like you are considering these issues, which causes me to relax a bit.
    And I’ll be the first to admit that your overall hypothesis is way out of my league in terms of any working knowledge I have of the biological systems involved. Therefore, my comments are geared towards the process, not the hypothesis itself.
    Regards,
    Steve

  16. daedalus2u April 3, 2007 at 17:49 #

    I appreciate the clarification. I am attempting to follow the “right” path to get to where I think this can go. My business partners are NT, and they don’t understand the technology. One of them has known me for about 20 years, and was one of the founders of the company we started to commercialize another invention of mine (the only honest one).

    They are frustrated because I can’t seem to get what they call “scientific validation”. What they actually “mean” is that I can’t convince non-scientists that my hypothesis is valid sufficiently for them to give us money. Senior scientists I have convinced, but senior scientists don’t have any money to spend on research not their own, or they have business interests which are in conflict with this.

    My mother died with advanced Alzheimer’s before I made this discovery. One of the things that has greatly informed my research, have been the effects that I have experienced having increased my NO level. I inherited her low NO physiology, which gave her Alzheimer’s, which made all of my siblings on the spectrum, and which gave me Asperger’s.

    I think that my stuff would stop the progression of Alzheimer’s, and prevent it from happening at all.

    A large part of what is motivating me, is not the billions I will eventually make, but rather the millions that are suffering right now from stuff that I think (know) I can prevent with a treatment that is completely natural and which poses near zero risk.

    It is extremely frustrating to me, because I know that I am right. Not because of my ego, but because I trust that the thousands of scientists who have put their results into the literature have done so honestly. I think those results are reliable because they all cross correlate with each other. Taken together (once the minor components that are wrong are discarded) they present a single (but very complex) picture of reality.

    In the fullness of time, these bacteria will become recognized as an important part of good health and their use will be widely practiced. Until then, the degenerative diseases that are plaguing the developed world will get worse. I feel like I am doing everything within my power to accelerate that time, but much if not most of it is outside my control.

    I appreciate that no one else can really tell if I am speaking the truth, or blowing smoke. Whether I am right, or just another self-deluded wacko.

    It reminds me of the old engineering truism

    Good, Fast, Cheap. Pick any two.

    Right now I am proceeding good and cheap because I don’t have the resources to do it good and fast. I am not going to do it fast and cheap.

  17. Prometheus April 3, 2007 at 18:00 #

    Daedalus2u,

    Your hypothesis – if I read it correctly – is that commensal ammonia-oxidizing bacteria are responsible for setting the basal NO/nitrite level. Where is this “basal NO/nitrite level” being “set”?

    You seem to hypothesize that this is occurring in the skin (see below):

    “…it is modern bathing practices, which by removing the very important commensal autotrophic ammonia oxidizing bacteria (which set the basal NO/nitrite level by oxizing the ammonia in sweat) cause a reduction in basal NO/nitrite levels.”

    If this is so, then how far can the NO travel before it is metabolized? I don’t believe that it can get very far. It certainly would not get to the brain, as that would require a complete trip through the venous system.

    You are also overlooking other small signaling molecules that have a profound impact on the mitochondria (and have a much longer half life). Perhaps you should also investigate H2S.

    I eagerly await your data.

    Prometheus

  18. daedalus2u April 3, 2007 at 18:27 #

    You are absolutely correct, NO as NO cannot diffuse very far. But NO does attach to other things, and those things can diffuse and be transported long distances.

    There are some retes in the vasculature that supply the brain, the function of which is not fully understood. Some veins from the scalp do penetrate the skull and join the venous drainage from the brain. There have been reports that some hormones are transferred from the venous blood to the arterial blood in corresponding retes in pigs. Is some NOx species being transferred too? I don’t know.

    http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10729013&dopt=Abstract

    The major protein in plasma is albumin, and the major S-nitrosothiol in blood is S-nitrosoalbumin. S-nitrosoalbumin does transnitrosate with other low molecular weight thiols, GSH and others, forming RSNO-thiols. A number of enzymes catalyze this, such as protein disulfide isomerase.

    I don’t pretend to know all of the mechanisms. I have no doubt that many things are important, including H2S. The focus of my work is NO/NOx from these bacteria. I think that NO is the most important of the small signaling molecules, but they are all important. Disrupt any of them and you will have bad health effects.

    I do discuss some of the background in my blog on what I term “basal NO”. It is not a very precise term because it is not constant in time or space.

    I came across a good quote this morning, something to the effect that “cells evolved to survive, not so scientists could understand them”.

  19. Friend in California April 3, 2007 at 22:48 #

    Daedalus2u said:
    “NTs can’t abide being thought of as foolish.”
    I can abide being thought of as foolish. As a matter of fact, I make quite a nice habit of it 🙂

  20. Broken Link April 4, 2007 at 03:07 #

    Daedalus2u,
    If I understand correctly, your hypothesis relies on the idea that the rates of autism have increased in recent years, or at least increased since people started bathing every day. But there is no very strong evidence for this. While science cannot rule out a small increase in the autism rates, it is clear that the vast majority of the apparent increase in autism diagnoses is due to better diagnosis and broadening of the criteria.

    So, if there is no real increase in autism, then why do we need to invoke any “modern” cause?

  21. Barbara J April 4, 2007 at 13:13 #

    Yes, thanks Daedalus, I did get your email! In the middle of my PhD, though, and haven’t replied yet!

  22. anonimouse April 4, 2007 at 13:27 #

    If I understand correctly, your hypothesis relies on the idea that the rates of autism have increased in recent years, or at least increased since people started bathing every day. But there is no very strong evidence for this. While science cannot rule out a small increase in the autism rates, it is clear that the vast majority of the apparent increase in autism diagnoses is due to better diagnosis and broadening of the criteria.

    So, if there is no real increase in autism, then why do we need to invoke any “modern” cause?

    That is my concern as well, as there is no reasonable epidemiology to discern whether modern hygiene has increased the incidence of autism. My fear would be that this is one of those interesting biological avenues that ultimately goes nowhere.

  23. daedalus2u April 4, 2007 at 14:21 #

    As I have mentioned, ASDs are a small part of what my NO research is about. There is a tremendous increase in obesity, heart disease, Alzheimer’s, diabetes, kidney failure, liver failure, allergies, and so on. These are not due to better diagnostics. Life expectancy is actually starting to fall in some places due to obesity (and other effects of low NO).

    I think that ASDs have been a human response to low NO caused by stress since before humans evolved.

    I think the diagnostic criteria for ASDs is completely arbitrary, and I agree that much of the “epidemic” is due to changed diagnostic criteria.

    There are probably at least a dozen things that will “cause” ASDs. Low NO from the loss of these bacteria will make all of them slightly worse, and perhaps can “cause” it all by itself in some individuals. Because stress is one of the things that can “cause” it, hysteria about ASDs will increase the prevalence and severity.

    Normal human neurodevelopment requires some of the characteristics of ASDs. If you don’t have them, you are not human. It is like being short vs tall. Everyone is either short or tall, where the cut off is is completely arbitrary. If you are not either short or tall, you don’t have a body, so can’t be a human (that is a gross simplification).

    Low NO could explain an increase if there actually is one. I am not “relying” on evidence of an epidemic as part of my core rationale for low NO contributing to ASDs. That is mostly based on my own experiences, my understanding of NO physiology and its effects on neurodevelopment, and the critical behavior of neural networks, and that all physiological symptoms associated with ASDs can be “explained” by low NO.

    It is not one, or two, or even 10 things that have convinced me, it is hundreds or thousands of things all taken together. I understand that kind of understanding is very difficult to convey to someone else. Writing it all down (which I am in the process of doing) takes hundreds of pages, and many references. I am at over 300 references in my (brief) write-up so far.

    I think the most important conclusion I have made is that ASDs per se, are not actually “disorders” (but by no means is that something new I have discovered). They do cause “problems”, but for the most part there are only 2 main problems. The first is that if NO is sufficiently low, the connectivity in the brain drops before a critical level and functionality “falls apart”, i.e. a “meltdown”. The second problem is how NTs view ASDs because of the “non-typical” mirror neurons that ASDs have. This is the only “problem” that I currently have, it is extremely difficult to find a girlfriend because the “chemistry” doesn’t “feel right” for her (because I don’t have the proper mirror neurons structures).

  24. Joe Herr April 18, 2007 at 00:02 #

    In my opinion the combination of bottle feeding and either MMR or DPT is the cause of regressive autism, but not birth autism.The combination of bottle feeding and either MMR or DpT underlie obstructive sleep apnea which causes reflux, diarrhea and ear infection and other stuff.

    I was going to suggest a search on PubMed for “herr [au] AND ear infection” but you will end up with the citation.A snort (A apnea termination expulsion of air) opens the eustachian tube and blows infectious organisms into the middle ear. Since gastric juices are introduced into the oral cavity by reflux, some of these juices are also introduced into the middle ear.

    (The concept of apnea termination blast etc is from Bluestone in 1976.) I won’t bore you with more, unless you want more of my style of information.

    I checked, it is 1976 for the Bluestone abstract. I visited the medical library in San Francisco to get a copy of the paper.

  25. daedalus2u April 18, 2007 at 01:01 #

    Actually some obstructive sleep apnea is due to low NO.
    One of the things that regulates breathing is nitric oxide. The breathing center sums signals from low O2 (hypoxia), high CO2 (hypercapnea) and high S-nitrosothiol (not yet named).
    When NO is low, then S-nitrosothiols are low, and the other two signals (low O2 and high CO2) have to get to more extreme conditions for breathing to be triggered.
    A similar thing happens in a number of end stage diseases, where the breathing reflexes become unstable in what is known as Cheyne-Stokes Respiration. (this mechanism is not fully appreciated because NO and R-SNO status is difficult to measure, and not well understood or appreciated).
    No doubt reflux would cause or exacerbate ear infections, but I think that is a an effect of obstructive sleep apnea, not necessarilly a cause.

  26. HN April 18, 2007 at 01:29 #

    Dear Mr. Joe Herr,

    I think you may have to do better than that. Perhaps even provide an actual cite. Oh, wait, here it is:
    http://www.springerlink.com/content/k84717u2h6t3308m/

    It is NOT a journal paper showing real research that may have included stuff like data, controls and other stuff. Like showing the difference between the populations who were breast fed and bottle fed.

    It is a letter to the editor, written by Joseph R. Herr.

    Now did you make sure to include ways to eliminate other causes that would create autism like disorders? Things like acquiring the actual diseases like measles and Hib? Or even seizure disorders like Landau-Kleffner Syndrome? Or accidental damage either through traumatic brain injury or oxygen deprivation?

    What is amazing is that there are things that effect the brain to create similar symptoms, but are from different things. Yesterday I met a young lady who has very similar special ed. problems as my son. But hers were not caused by seizures, but by a brain tumor that was discovered and removed when she was seven years old. Though in her case, she also lost all the hearing in one ear and a good portion in the other ear. But her short term memory problems along with written expression issues were remarkedly similar.

  27. HN April 18, 2007 at 05:06 #

    In other words: Do you think we are stupid?

    Many of us have been dealing with the anti-vaccine scaremongers for almost two decades. One of those decades in the USA there was a measles epidemic (which KILLED over 120 real people), and that does NOT include the increase in pertussis that has been killing infants too young to be vaccinated.

    Bottle versus breast… not exactly a glorious platform on which to place a scientific theory.

    So what are you going to tell the couple that adopted a baby from a teenage child who was in no place to care for the infant? Or to the woman whose nipples despite lots of medical and La Leche League would not cooperate? Or to the woman who gave birth AFTER a mastectomy? Or to other moms who gave birth after other disparate medical interventions to keep them and their baby alive (which includes one of the moms in my birthing class)?

    For the record… I breastfed all of my children until at least one year of age. My younger children went to past their second year… to the point where child #3 was requesting “mommy milk” while at her post three year old swim classes.

    I sincerely doubt that my future of breastfeeding was in any way the cause of my first born’s seizures when he was 48 hours (2 day) old. Trust me when I say that for a normal lactating woman… just thinking about a baby (when he was in Intermediate Infant Care Unit) causes milk to flow in a new mom. Been there, done that.

  28. notmercury April 18, 2007 at 19:18 #

    When did this blog turn in to http://www.ratemyautismhypothesis.com ?

    Listen up folks, the autism epidemic started when we switched from latex to nitric oxide releasing silicone rubber baby bottle nipples.
    Got it?

  29. Friend in California April 18, 2007 at 19:56 #

    Sorry, Not Mercury, I was too busy watching TV with my Older Dad, and must have missed those causes. Oops, that’s me cell-phone ringing – gotta go!

  30. Tito Rajarshi Mukhopadhyay April 19, 2007 at 00:43 #

    I am Tito Rajarshi Mukhopadhyay again.

    I wish someone could give me some information on ‘how it feels like to go through a seizure.’

    I do not have it. But others do have it and I know it is difficult to watch a loved one go through it.

    I once met a neurotypical person here in Austin, who also began having seizures in his adulthood. He said that there was a gush of ‘spiritual pleasure’ which he experiences. But the problem was that it never gave any warning when it came. So he once found himself lying on a street. He gave up driving after that. However he does not want treatment because of the intense experiences.
    His senses seem to experience some inner happiness due to extreme sensory stimulations.

    It makes me curious how an autistic person experiences it from the inside.
    Do any of you who have autism also have seizure in this forum? Can you share your experiences?

    But again, its up to you. You may choose not to. I was just wondering.

    Regards
    Tito Rajarshi Mukhopadhyay

  31. Ms. Clark April 19, 2007 at 01:23 #

    Tito,

    He’s probably describing temporal lobe epilepsy.

    People with TLE frequently report feeling something of a religious or spiritual nature. They may feel like they are getting special messages from God, and the outcome of those feelings are not always good. Not that TLE sufferers are bad people, but they can make really bad decisions based on the idea that they are suddently very special and getting special messages.

    I don’t think this has much overlap with autism, myself. That’s my opinion.

    There are different kinds of seizures, in some of them the person may freeze like a statue and be “absent” mentally. They are called “absence seizures”…
    Then there are minor seizures that are a little like a muscle twitch, I have those. If they are a little worse they might make someone drop a cup they are holding.

    Then there are grand mal seizures where people start shaking really badly. I think sometimes people are aware through the seizures and sometimes they are “gone” and not aware.

    I think there are probably lots of first hand accounts of seizures out there. Kassiane (Rett Devil blog) has had lots of scary seizures, she’d be much more of an expert than I am on the topic, she has the Rett syndrome mutation and is diagnosed autistic, too.

  32. Tito Rajarshi Mukhopadhyay April 19, 2007 at 01:41 #

    Well Madam Clark,
    That makes it sound like a ‘suffering experience’.
    I wonder…when I used to get claustrophobic, in a moving car or even in a long aeroplane travel, between the ages 12 and 16, I felt dizzy and hot.
    Sometimes I really got very desperate.
    They made me feel breathless.
    The doctor ( psychiatric) prescribed me Depacote.
    But perhaps mine were simple mental anxiety.
    Well, whatever it was, it was not something to boast about.
    Regards,
    Tito Rajarshi Mukhopadhyay

  33. Ms. Clark April 19, 2007 at 02:03 #

    Suffering is in the eye of the beholder, right? A man who is habitually drunk is probably not suffering while he’s drunk, but he may lose his job and become homeless, and the suffering is bound to catch up with him (or her) eventually.

    Even some people with delusions, in schizophrenia, have nice, happy delusions. Sometimes doctors will work with those patients to not drug the happy delusions out of existence. There was a situation like that my friend told me about, she is a social worker.

    It’s unfortunate that many delusions make people feel very frightened, and that, it seems to me would be suffering… on the other hand some of the treatments that these people get are just as bad as the original pain of delusions, so treatments need to be measured out carefully for the benefit of the patient, not to the harm of the patient.

    There’s another feature of seizures that is kind of scary, that is in the period following the seizure, the person may act normally. From their point of view they are normal, they are normal… except whatever they do for that time following the seizure they are not able to recall. So they may drive their car to work (perfectly safe) but not recall ever having driven the car to work.

    It’s just scary because, say the husband can tell his wife something about what happened at work. If she is in the post-ictal phase, she can engage in the conversation, but later remember none of the details of the conversation. But the husband wouldn’t necessarliy know that, and he might get very frustrated because his wife has no memory of the conversation. She might say, “you didn’t tell me that…”

  34. Kassiane April 19, 2007 at 02:37 #

    Seizures…are scary. I’ve had most of the kinds there are (atonic, clonic-tonic, myoclonic, atypical absence, temporal lobe, frontal lobe, had occipital lobe as a child and occasionally as an adult). My adoptive father has them too, but his are mostly temporal lobe.

    I don’t remember much of mine except the waking up on the floor with a huge headache part, or wondering how I GOT on the floor. My frontal lobe seizures are nocturnal only and look like parasomnias (Tito, you seem very smart so I’m going to talk as though you have my vocabulary. If I go ‘over your head’ I don’t mind explaining). If it weren’t for the morning headaches the frontal lobe ones would be mostly funny because I say really strange stuff-like once I said I was off on an expedition to the center of the earth to kill the ice demon or something like that. I also tried to drive off, which is bad.

    I’ve never had the religious thing, but I have made incredibly stupid decisions in the period of time pre seizure, and so has my dad. But I hit the ground and start twitching a lot faster than he does, he walks around and says the same word over and over, I flop and wake up with a headache and cough and sometimes throw up. The time during and immediately before is gone, as is immediately after. Immediately after I cannot communicate very well either, I use a little sign language after a seizure and do so very BADLY.

    I know of others who enjoy their seizures. I’d much rather do without them. But mine are quite severe and I am educated on the damage repeated seizures do to a brain. When they happen as often as mine did untreated it is life threatening.

  35. daedalus2u April 19, 2007 at 02:40 #

    There can also be brain damage associated with seizures. A process that is called “excito-toxicity”. If some brain cells are activated too much, they ablate themselves to avoid over activating down stream cells too (but I think that happens more early in the course of what ever is causeing the seizures, which is why seizures in children can be quite serious and need to be considered carefully).

    One of the things that happens following strokes sometimes is that sometimes inhibitory neurons are damaged, then without the inhibition that they provide, down stream neurons become over activated and die too, and that can propagate for weeks after a stroke. That is one of the reasons they don’t know how bad a stroke is going to be for quite some time.

    Seizures are really not something that has an upside.

    Ms Clark, what does a meltdown look like on an EEG? does it look like a seizure?

  36. Ms. Clark April 19, 2007 at 02:56 #

    I would think that meltdown’s have different appearances on an EEG. I don’t know if reaching the point of having a meltdown (the internal changes of the stress leading up to the meltdown) would trigger a seizure.

    My biggest experience with seizures is with my dog, who has pretty serious seizures about once a month. She doesn’t defecate or urinate during them, which I understand means and even worse seizure (for a dog)…

    the dog isn’t on meds for them, because I don’t want to go down that road. She seems ok in between seizures.

  37. Kassiane April 19, 2007 at 03:37 #

    Having seen meltdowns (mine) and seizures (also mine) on EEG…they look different. Even when the events look the same…good ol’ “rage seizures”…the outside looks the same but electrically it looks soooo different.

  38. daedalus2u April 19, 2007 at 03:46 #

    How do they look different? Frequency respose? magnitude?

    Seizures can reliably be induced by hyperbaric O2. That is enough O2 for long enough will always induce a seizure.

  39. Kassiane April 19, 2007 at 05:49 #

    A siezure has more waves/sec. of smaller amplitude. On me the only lobe that stays the same is right temporal, and thats because it switches between theta and delta waves regardless of sleep or wake and emotional states, it’s really not doing a blessed thing other than sleeping…

    And i’ve been saying that about hyperbarics for ages. But they don’t listen to ME….I’ve got my EEG reports memorized as well as the mechanisms of action for every damn drug Ive failed (all but the ones I’m on and the ones they can’t put me on, and I know the MOAs for most of those too)…but I cant know ANYTHING because of the young female autistic thing. Blegh.

  40. Tito Rajarshi Mukhopadhyay April 19, 2007 at 12:26 #

    Thank you for making me understand how terrible it is.
    I admire you for being so brave and facing it.
    I hope it gets better one day soon.
    I think siezure disorder is more important to get cured than autism.
    Regards
    Tito Rajarshi Mukhopadhyay

  41. Kassiane April 19, 2007 at 20:13 #

    I agree on curing seizures rather than autism. Seizures can kill people. Autism never has. Autism doesn’t even have to give anyone a headache provided the people around the autistic folks aren’t too difficult to deal with.

  42. generic lipitor May 23, 2007 at 16:47 #

    I have this work friend who has a daughter of 5 and recently she got some very serious improvements on speech, but most striking one is in eye to eye contact. He said he used some unconventional medicine for thins, but I do not trust in herbs doing something like this. Is it possible?

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