• Author: Kev
• Comments: 92

• ARI
• Autism
• Chelation
• DAN!
• David Kirby
• Mercury
• Quackery

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Comments

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

1. 
   Jeanette
   March 29th, 2007
   11:26:37

   Our youngest child just turned 6, he is also beginning to improve in the areas of speech, eye contact, and attention.
   Amazing how this is all happening without any biomedical interventions at all!

2. 
   Harold L Doherty
   March 29th, 2007
   12:58:31

   I do not subscribe to the thimerosal causes autism theory because there is a solid consensus of world scientific opinion which states that there is no evidence to support the theory. It would be of benefit to persons with autism disorder though if both the Kirby camp and the Neurodiversity camp would refrain from the childish taunting back and forth and let science and research explore causality issues in autism.

3. 
   Broken Link
   March 29th, 2007
   14:03:17

   Just wait a minute here. Katie took her child to Krigsman, according to EoH. He’s a big GI/MMR doc. And according to Katie, he’s the doctor who really turned Christian around. Then, it’s MMR that’s the problem for Christian? Not mercury? So why does David Kirby feel vindicated in any way by this?

   Moreover, if Christian is 5, then he was born in 2001 or 2002. At that time, statistically speaking, he had about a 5.6% or less chance of receiving a thimerosal containing vaccine. A review of his immunization records should make it clear whether or not there was ANY chance of him receiving mercury in his shots. I’m betting, based on very good odds, that he didn’t receive any.

4. 
   Lisa/Jedi
   March 29th, 2007
   16:21:04

   I am struck by how she speaks of his eye contact & attention as “returning”... from where? Young children are not particularly known for their ability to attend to things. Sounds to me that Christian is learning these things at his own pace. The “returning” thing is very hype-y & make me wonder what she was expecting from her child, behaviour-wise, in the first place.

5. 
   anonimouse
   March 29th, 2007
   16:58:36

   I’d like to know how many kids Krigsman has seen that DIDN’T have “gut issues”. If it’s like the other quacks in the mercury circle of doom, I’d say it’s probably very few.

6. 
   Kev
   March 29th, 2007
   18:40:24

   “It would be of benefit to persons with autism disorder though if both the Kirby camp and the Neurodiversity camp would refrain from the childish taunting back and forth and let science and research explore causality issues in autism.”

   Harold, do shut up you pompous idiot. How exactly does Neurodiversity stop or hinder science and research explore causality?

   Here’s the last scentence from my post:

   “However, they cannot force science to show something that it does not.”

   That works all ways. And if you want to call someone on being childish then take a look in a mirror just before you write another piece stuffed full of lies about how ‘the neurodiverse’ don’t want to treat autistic kids and deny the existence of ‘severe’ autistic people.

   If this debate is so abhorrent to you – feel free to stay away.

7. 
   anonimouse
   March 29th, 2007
   20:53:17

   I hate to be a bastard – ok, I LIKE to be a bastard – but I have to ask this question.

   How much of the “gut” problems in autistic children stem from real disease and how much of them are either imagined/wildly overstated by parents or caused in part by a autistic child stressed by his parents overreaction and pressure? I don’t really want to be the jerk here, but a lot of these so-called “severe gut” problems don’t seem that far removed the general variability of human digestive processes.

8. 
   Ms. Clark
   March 29th, 2007
   21:11:26

   According to the book “Zebras don’t get ulcers” which is all about the effect of stress, including social stressors… stress causes all the same gut symptoms that the biomed parents complain their kids have.

   But I think that some of it is also that they may be more prone to having problems digesting some sugars, dissaccarides (like Fructose) and the common Lactose intolerance.

   I think that the kids may be less able to communicate the pain from these common problems, and that on top of the stress is what’s causing most of the “gut” issues in autism. Not MMR and not leaky gut.

   And autistic kids are not stoned out of their minds on opiods from undigested wheat and dairy, you can see that Krigsman isn’t even telling these parents that their kids are obviously getting their hands on some contraband cookies and cheese (because all autism is is leaky guts). He’s just trying to calm down inflammation, when he finds it, with heavy duty drugs, from what I have read that he’s giving the kids.

   One other complication could be that some of the kids have genetic disorders (for instance Amanda Baggs has gut problems related to a genetic disorder – she was born with it, it didn’t come from the MMR shot). If 10% of autistic kids have some kind of genetic disorder than can affect the gut (apart from stress) then that should be investigated so that the kids can get treatment that actually addresses the underlying cause.

   But in Christian’s case, mommy and gramma (of the over-large cranium) KNOW that it was those dratted vaccines that made Christian’s belly get bloated, not lactose intolerance or something simple like stress from hour upon hour of ABA therapy (which conceivably could have been running concurrently with the gut problems).

9. 
   caseofthevapours
   March 29th, 2007
   22:40:20

   Bring paregoric back and let’s see how quickly all those childhood GI problems resolve.

10. 
    Harold L Doherty
    March 29th, 2007
    23:32:34

    You’ve really distinguished yourself this time Kev. The level of your comments to me are no more mature than your silly remarks in your DAN doctors, paedophiles and Scientologists. Keep slinging mud, with each volley your credibility declines accordingly and those seeking help for persons with autism disorder have one less obstacle to overcome.

11. 
    María Luján
    March 30th, 2007
    00:04:40

    anonimouse
    The answer to your question – at least in my son´s case- is a big NO. I invite you to read some comment on published science on the topic I have summarized in my blog.
    You don´t “imagine” a severe deficiency of IgA//IgA secretory, the lack of gut flora, 500 times normal of Candida albicans overgrowth, chlostridia and others parasites imbalances, celiac disease, food intolerances and nutritional imbalances. You do not “imagine” clinical analysis results properly done in serious labs; you do not “imagine” severe GERD, you do not “imagine” pain with night awakenings in scream, etc, etc.
    That stress can be collaborating ? Sure, but it is part it is not the only aspect to consider. I do not understand why always the exclusion is proposed
    It is this ( stress) and SURELY NOT that (a real GI issue that can be properly tested/diagnosed)because THEY say it.
    For me it is stress AND ….(depending on the individual) AND probably genetics in some degree (remember MET for example) AND unknown in some degree. In my son´s case, it was a combination of factors.

12. 
    Another Voice
    March 30th, 2007
    02:29:51

    Mr. Doherty

    Why do you see the acceptance of autistic people as such a threat to your agenda?

    I have not seen anything on this blog to discourage science from pursuing the study of autism. I see the opposite, I believe there is encouragement for real scientific efforts to determine what autism really is, how it comes about and how to improve the very difficult manifestations that accompany it.

    I have seen, and I welcome, a very keen insistence that the science be factual, professional and subjected to peer review. How can that be bad?

    I support autism research. I also support autistic people, in fact I love two of them. I do not see these avenues as mutually exclusive. I have tried to read as much as I can about autism but I still don’t know what it really is. I hope that one day science can answer that for me, I am not capable of researching that on my own.

    There are already a large number of children and adults among us that are autistic. They are being devalued because of a label, because they are different. That bothers me a great deal, I want to change that. I want them to have every opportunity and all of the respect that we afford any other person.

    I think we could all be on the same page.

13. 
    livsparents
    March 30th, 2007
    02:53:02

    Oh boy! Gut Issue are really getting buried under a pile of literary vomit today, huh? From stress induced GI issues brought on by overbearing parents with runaway imaginations and overzealous ABA therapists to every crackpot theory doctors Wakefield and Krigsman ever came up with. Kev why is it that that because only 49, 35, 20 or even 10% of the autistic population have GI symptoms, that there couldn’t POSSIBLY be a link?

    Even if not, wouldn’t it be better that those parents should be on the lookout for the general variability of the digestive process in those stressed out autistic kids (especially those non verbal ones who may not be able to express their discomfort)?

    Really guys, you could scare many parents into thinking their kidsa couldn’t possibly have anything wrong with their gut…

14. 
    daedalus2u
    March 30th, 2007
    03:45:37

    A lot of the enteric nervous system is nitrergic, that is NO is what controls it. The anal sphincter is relaxed by NO, constipation might be due to insufficient basal NO.

    Stress causes low NO, so yes, stress does screw up the enteric nervous system. If you subject the enteric nervous system to “stress”, it can have a “meltdown” too. My hypothesis is that low NO reduces the connectivity of the enteric nervous system, and when it drops below the percolation threshold, all “hell” breaks loose, and it doesn’t work “for shit”, so to speak.

    How about trying an old remedy (1907) for constant and excessive vomiting?

    http://www.harvestfields.ca/He.....01/086.htm

    3,000 to 6,000 micrograms of calomel every hour or half hour until “there is a decided change in the color and character of the stools” (aka a sign of mercury poisoning)

    I suspect that this does not meet the current “standard of care”. But at the time, it wasn’t woo, it was state of the art medicine. Boy, isn’t it a good thing we are no longer living in the dark ages? Where children were given many milligrams of mercury and they got better? Children today are so “weak” that even a microgram of mercury is more than they can deal with. Children 100 years ago could tolerate 10,000 times more.

15. 
    Ms. Clark
    March 30th, 2007
    04:05:10

    Livsparents,

    Kev isn’t talking about stress and the gut, I am. Did you see the part where I said that some kids are autistic because of a known or knowable genetic disorder that may also (or usually does also) impact the functioning of the gut.

    The answer is first of all work with a real doctor, one of which I am not, but if it was me in charge of the kid’s health, if your kid really can’t digest food and is really truly constipated and his diet isn’t the usual autistic one (very restrictive) then try to take him to a gastro-enterologist. If that doesn’t work, try to see if the pediatrician will check to see if he’s got problems with lactose intolerance, if that doesn’t work, see if he can’t digest fructose (supposed to be quite common), if that doesn’t work. I think all autistic kids need a really good visit to a genetecist since up to 50% of ‘autistic’ kids might have a diagnosable, but perhaps subtle form of a known genetic disorder.

    See if the kid has food allergies. By all means if the kid needs to stay away from some particular food, keep it away from him.

    But first of all see how much stress the kid is under. You can’t always tell from their faces either, you can tell by how much cortisol is in their spit, at least it works in experiments.

    You better believe that parents put unusual amounts of stress on their kids, Bill. Autistic kids get smacked for doing thing they don’t understand is offensive, at least in cultures where parents regularly hit their kids, and no I’m not against spanking, intrinsically, I am against abuse. Then there’s the wholesale difficulties in related to other children which can turn ugly sometime before age 5 if my memory serves me.

    If a child is not speaking at age 2, don’t you suppose he’s under stress quite a bit? Don’t you think it could cause an ulcer?

    It is known that autistic kids are under more health endangering levels of stress and that their cortisol levels stay higher following stressful events than in normal kids. Are you going to just blow that fact off?

    I believe autistic kids can suffer from gut problems, I just don’t believe for a minute that treating the gut problem is going to change the core issues that are eminating from the way the brain is wired from before birth.

    As yummy as it sounds to “cure the gut, cure the autism,” “change the diet, get rid of the autism,” it just does NOT happen that way in real life.

16. 
    Michael
    March 30th, 2007
    05:05:15

    Hi Kevin,

    I agree with much of what you said. However, there may be a connection between gut issues and autism.

    My son was part of a leaky gut study to see if kids with autism are more likely to have a leaky gut. It turned out that kids with autism are more likely to have a leaky gut than a typical kid.

    The implications of this are still most unclear though. For example, does leaky gut cause behaviors associated with autism? Or does autism increase your chances of having a leaky gut.

    Anyway, I thought I would drop that bit of information here.

    Thanks

17. 
    Friend in California
    March 30th, 2007
    05:11:23

    Harold – I am sorry you have developed such a distaste for the views expressed by the “Neurodiverse”. I strongly believe that your analysis of the views espoused by many of us who frequent this site, among others, is incorrect.
    While I have not viewed the debate between you and Michelle Dawson, it was referred to by Kevin as a primary factor in your dissatisfaction with the ND crowd.
    At issue, apparently, was your disagreement with Michelle on the topic of ABA, whether it is effective, whether it is appropriate, whether it is even humane. If you look back at some of my comments, I also dispute Michelle’s views on this topic, albeit perhaps more respectfully than I would gather you do, based on your tone in comments made here.
    The fact that I do not see eye-to-eye with Michelle – on this one topic – does not mean I am at odds with the entire community that associates with Michelle, nor with Michelle herself (who I do not know personally).
    Nor does it mean that I do not believe in seeking help for autistic persons. Nor does it mean that I deny the existence of persons more severely affected than my own son.
    I’m, sorry, Harold, but you need to get over your anger on this whole topic. I have read your blog and I know you have sunk a lot of effort into bringing about what you feel is an appropriate response for your local government to take. Please take notice that your actions – deliberately waging a war of words against the ND community – many of those being the population whom you have fought hard to help, is not only counterproductive, but also hypocritical.

18. 
    Kev
    March 30th, 2007
    08:30:34

    “You’ve really distinguished yourself this time Kev. The level of your comments to me are no more mature than your silly remarks in your DAN doctors, paedophiles and Scientologists. Keep slinging mud, with each volley your credibility declines accordingly and those seeking help for persons with autism disorder have one less obstacle to overcome.”

    Harold, I’ve tried being polite to you on your own blog, on Kristina’s and on here and I simply can’t be bothered any more. You’re an idiot. You demonstrate this idiocy by lying about the beleifs and motives of people that threaten your world view.

    What is your issue? Why do you find it necessary to simply make stuff up? And when people call you on it why do you get sulky? Why not try defending your stance?

    re: DAN! docs. Believe it or not, some are paedophiles. Some are scientologists. Roy Kerry is a DAN! doctor? Don’t these things worry you? Or are you more concerned about scoring points?

    Lastly, I couldn’t give a fig for ‘credibility’. This is my blog where I voice my opinions. I’ll leave the spin and political back slapping to you.

19. 
    Kev
    March 30th, 2007
    10:18:18

    “I agree with much of what you said. However, there may be a connection between gut issues and autism.”

    Of course there may – but is there? And in what proportion of autistic kids?

    “My son was part of a leaky gut study to see if kids with autism are more likely to have a leaky gut. It turned out that kids with autism are more likely to have a leaky gut than a typical kid.”

    Which paper is this Michael?

    I think we have to be very, very careful about assuming that because some kids with autism have leaky gut that it is a de facto ‘part’ of autism. Some autistic people have Asthma (inc Meg) – does that mean Asthma is a de facto ‘part’ of being autistic? Are these things in existence in significant numbers?

    We’re barely scratching at the surface of accurate epidemiology as it pertains to autism. I can’t see how we can possibly know enough to start saying these things.

    How about Epilepsy? A significant percentage of autistic people have epilepsy. Does that mean epilepsy is ‘part’ of autism? If so, why isn’t it in the DSM? How come there are epileptics who are not autistic?

    Michael – obviously leaky gut is part of your sons autistic ‘experience’ – as it is for Christian but I don’t see how we can proceed on the basis of anything except here’s something that maybe a significant comorbidity, but equally may not be.

    Does that mean it shouldn’t be addressed and treated? Of course not. It should. Does it mean that (right now) we can add leaky gut to the list of things that ‘are’ autism? No way.

20. 
    Dawn
    March 30th, 2007
    11:52:08

    I’ve been reading this blog for a while, and I think what’s getting lost here is what Kev keeps pointing out.

    NO ONE is saying a child in distress from pain, whether abdominal, head, or whatever, should not be diagnosed and treated. What they are saying is that you can’t blame all of the child’s problems on this one issue, and curing this issue will “cure” the child.

    Maria points this out, as does Ms. Clark -IF a child has any health problems, diagnosed by a reputable practitioner, then those issues should be treated. But treating those issues will not cause the child to be less autistic. Treatment may decrease any behaviors related to coping with pain/discomfort/stress/whatever, but it does not cure the autism.

    And, what Kev et all are saying, as I see it, is that while some problems may be more prevalent in the autistic community, they are not ‘markers’ of autism and should not be included in the diagnostic criteria.

    Kev…keep up the good writing.

21. 
    María Luján
    March 30th, 2007
    12:48:55

    Hi Dawn
    What I can say is that many of the supposed symptoms to diagnose autism under the DSMIV- surprisingly for me I must say- were very much ameliorated or disappeared completely when all the issues I mentioned were properly addressed.
    You know, I have problems with the position
    “Cure (gut/immune system/Whatever) and you will cure autism”- how are the bases in the DNA going to be changed if you heal GI issues/immune dysregulation and so on- but also with ” to heal GI issues/immune dysregulation and so on has NOTHING to do with ASD”- because gene expressions, epistasis- that is interaction between genes- and all the proteomics /metabolism/biochemistry that genes/epigenetics can be affected by. Also all the emotional/psychological effects of the many effects of a different genetics , such as in ASD, and different gene expresion can have.
    For me, is very much complex.
    Am I going to “cure autism” with any of the treatments of whatever I can find as Concomitant medical problems ?
    NO- for now with the status of the knowledge and the problems about the definition of what autism is.

    Am I going to touch the different genetic expression and the consequences of these with the environment?
    PERHAPS; Who can be sure of the NEGATIVE or the POSITIVE if nobody has studied properly the overall issue as it deserves at the autistic people population of all ages? What I can say is that in the case of my autistic son, I did and I healed – and am in the process of healing- CMP with impressive effects in his well-being and happiness.
    The main problem is when the debate is reduced to CAUSE/CURES of “autism”. For me , as a parent/mom, I want the best health for my autistic son-what I find that can be producing pain/distress/hindering of the best outcome. As a scientist I would want to know the causes- that BTW, is not only one and are not- as such- the ones that are currently discussed many times. For me it is much more complicated and somehow ambiguous and different for each one and so on.

22. 
    anonimouse
    March 30th, 2007
    13:15:31

    I do not discount the possibility that autism and GI disorders COULD be related. (or that there is a particular pathology that causes autism and GI disorders in a subset of kids)

    My problem is more along the lines of some parents assuming that any GI disorder is related to their child’s autism, and furthermore, caused by some hideous environmental factor that has to be expunged from the body through unproven drugs. It is certainly possible for a child to have Chron’s and be autistic, for example.

23. 
    Michael
    March 30th, 2007
    13:28:01

    Hi Kev,

    Let me address your questions in turn here:

    “Of course there may – but is there? And in what proportion of autistic kids?”

    I don’t have the numbers off hand, but there was a higher likelihood that kids with autism will have leaky gut. Not that all do, but simply that kids with autism are more likely to have it than typical kids.

    “Which paper is this Michael?”

    The paper on this should be released in another month or so. It is my son’s developmental pediatrician so I was able to ask her about the conclusions before she published them.

    “I think we have to be very, very careful about assuming that because some kids with autism have leaky gut that it is a de facto ‘part’ of autism. Some autistic people have Asthma (inc Meg) – does that mean Asthma is a de facto ‘part’ of being autistic? Are these things in existence in significant numbers?”

    I much agree with what you say here. The study just points out the leaky gut rates of typical v. autistic kids. It does not mean, of course, that all autistic kids have a leaky gut or will have one.

    “Michael – obviously leaky gut is part of your sons autistic ‘experience’ – as it is for Christian but I don’t see how we can proceed on the basis of anything except here’s something that maybe a significant comorbidity, but equally may not be.”

    That was the point of the study Kev. To see if there is a relationship between autism and leaky gut. It seems, there is. What that means, who knows!

    I will try to get the doc on the podcast once she releases the study. It is interesting stuff and worth exploring. It is, as usual, not the one thing that means autism. Rather, it is appearing to be on of the many things.

    Thanks,

    Michael Boll

24. 
    notmercury
    March 30th, 2007
    13:36:54

    Given that disturbances in serotonin levels, transport, and storage are one of the most consistent findings in autism, why is it surprising that GI disturbances would be more frequent in autistic people?

    As ‘daedalus2u’ pointed out, there are many similarities between the ENS and the CNS. Something that may effect one will probably effect the other. That’s a long way from establishing a connection between GI disturbances and autistic behaviors and very far from a role for mercury as the causative agent.

    There’s an IMFAR abstract that reports an increased rate of gastro symptoms.
    http://www.cevs.ucdavis.edu/IM.....stid=11351

    Conclusion: Preliminary findings confirm increased rate of GIS in PDD possibly related to diet and IQ with no differences in gut permeability between children with PDD and those without.
    Not a bad conclusion, in my opinion. Does anyone have or know an autistic child with a less than typical diet?

25. 
    María Luján
    March 30th, 2007
    13:51:47

    Hi not mercury
    Yes, I saw that; and I also found the potential connection between the serotonine levels and the Brain Derivated Neurotrophic Factor in autism- very interesting (for me) to look at.

    Int Rev Neurobiol. 2004;59:111-74.
    Serotonin and brain development.
    Sodhi MS, Sanders-Bush E.
    ...The role of the serotonergic system in the neuroplastic events that create, repair, and degenerate the brain has been explored. Synaptic plasticity occurs throughout life and is critical during brain development. Evidence from biochemical, pharmacological, and clinical studies demonstrates the huge importance of an intact serotonergic system for normal central nervous system (CNS)function. Serotonin acts as a growth factor during embryogenesis, and serotonin receptor activity forms a crucial part of the cascade of events leading to changes in brain structure. The serotonergic system interacts with brain-derived neurotrophic factor (BDNF), S100beta, and other chemical messengers, in addition to ts cross talk with the GABAergic, glutamatergic, and dopaminergic neurotransmitter systems. Disruption of these processes may contribute to CNS disorders that have been associated with impaired development…

26. 
    livsparents
    March 30th, 2007
    14:21:14

    “My problem is more along the lines of some parents assuming that any GI disorder is related to their child’s autism”

    But in a manner of speaking, don’t GI play a role in autism? Forgive me, because we are facing a case and point at this moment. We beleive she is having some distress, possibly constipation, might be something else, but for the past week we have been wondering if it was a more assertive behavior; a problem with transition. Even with people ‘in tuned’ to the possible symptoms of GI-type distresses, it’s still sometimes a crap-shoot (had to work THAT on in ;)). I wonder how many kids are dealing with this that are labled ‘behavior problems’ and they just plain hurt and no one can understand.
    I agree that causation is one thing to fight against when talking about GI issues, but their effect could show just as much promise for other kids if we could get them ‘fixed’.

27. 
    Kev
    March 30th, 2007
    14:32:07

    Michael – sounds look a very interesting paper. Is there anything else you can talk about? I understand you might be under embargo but any tidbits would be welcome. Looking forward to the ‘cast!

28. 
    Ms. Clark
    March 30th, 2007
    16:01:02

    I don’t see any evidence that changing diet or adding a drug, is going to change “the gut” and also change the core attributes of autism.

    Sure a kid might spend less time staring and flapping if he feels good than if he feels awful, he might spend less time head banging or pacing, but guess what? The underlying autism is still there and if a bad toothache or a parent’s divorce or bullying or death of a pet affects the child later on, the staring, flapping and head banging might return, just as easily as it went away when the belly pain disappeared.

    To me, that’s the logical way of looking at “the gut and autism.”

    Anything else, like the hypothesis wherein a leaky gut allows opiods into the brain which take a perfectly normal kid and make him “smacked out of his mind,” and therefor autistic, as a commenter on a YouTube video said (according to a recent video by Christschool that documents that comment) is just pathetic and the stomping ground of quacks.

    And none of my comments mean that I have some kind of influence over what research will be done in the future on the “gut” in autism.

    Here’s my message to all the autism researchers and gut researchers (who don’t read what I say anyway): Make sure you study the gut in autism, and if you want to make me happy, start with studying the effect of the massive amounts of cortisol that autistic “guts” are exposed to.

29. 
    anonimouse
    March 30th, 2007
    17:35:31

    But in a manner of speaking, don’t GI play a role in autism? Forgive me, because we are facing a case and point at this moment. We beleive she is having some distress, possibly constipation, might be something else, but for the past week we have been wondering if it was a more assertive behavior; a problem with transition. Even with people ‘in tuned’ to the possible symptoms of GI-type distresses, it’s still sometimes a crap-shoot (had to work THAT on in ;)). I wonder how many kids are dealing with this that are labled ‘behavior problems’ and they just plain hurt and no one can understand.

    Of course it can. But an autistic kid can get a stomach virus just like an NT kid. An autistic kid can withhold stool just like an NT kid, causing constipation alternating with diarrhea. While I don’t discount the idea that there might specific GI issues inherent with autism, I also think there are many issues that are common in all kids that are simply harder to deal with in autistics.

    The challenge, obviously, is to separate the wheat from the chaff – to determine which ones truly are related to autism and which ones aren’t.

30. 
    JessicaSimpson
    March 30th, 2007
    18:50:25

    I just think all of these parents having kids with autism, and not wanting them to get better and all they do is just trash biomedical interventions…bunch of idiots…if your kid was diagnosed with a chronic and painful, and terminal illness, wouldn’t you do anything as a parent to make your son/daughter feel better? or save him/her? Wake up and smell the coffee people…vaccines, environmental factors, the world in general is just freaking toxic, anything and everything causes autism, developmental delays, etc…and by the way, any of these were even heard of back in the 80’s when I was growing up….wouldn’t you do anything to have your autistic kid look at you and tell you how much he/she loves you? and just seeing your kid happy and enjoy childhood….Well I’m a parent of autistic kids that I love with my entire soul and would do anything and everything for them….and yes they’re both improving tremendously with biomedical interventions….thanks to the world for DAN doctors who have taken their time to help us out and give some of us hope and give us our children back…...all these people that all they do is trash biomed, and put these stupid blogs together just to bad mouth people who are helping our autistic kids, you outta take a look at your life and think wouldn’t you play your wild card just to see your kid happy? just take the chance in helping your kid? well obviously you don’t…your brains are just full of judgements…just feel sorry for you people, don’t know what you’re missing, stop wasting time writing your negative crap because the truth will prevail one day, and you guys will realize how much precious time you just wasted in being judgemental….....js.

31. 
    María Luján
    March 30th, 2007
    19:00:40

    anonimouse
    You are right in the sense of how we assign “symptoms” that my child can not tell if it hurts something, how much and so on. This is one of the worst aspects when dealing with CMP: to know about what is happening to him in terms of disconfort.
    Is he screaming because of pain? Is he more hyper because of pain? Has he a headache? HAs he changed his behavior for worse/better because of … what? these are common questions for me.Sometimes I can find an answer. Sometimes.
    Recently he has been able to tell me sometimes if his stomach hurts or if he has a headache. I also think that the same medical condition is presented/communicated differently by an autistic child,especially if there is no verbal language.

32. 
    anonimouse
    March 30th, 2007
    19:42:26

    Dear Ms. Simpson,

    I’m not sure the star of any movie based on the television show “Dukes Of Hazzard” needs to be lecturing on the subject of autism.

    But I digress.

    I’m not sure what people don’t understand about the concept of “false dichotomy”. This issue is not “treat” or “leave alone”.

    It’s about a legitimate question of whether issues like chronic GI issues are part of the pathology of autism. (or a subset of autistics)

    It’s about whether the biomedical treatments promoted by DAN doctors are of real benefit, especially when there is little or no peer-reviewed medical literature on most of them.

    It’s about assigning the blame for autism to vaccines, mercury, or nebulous environmental causes, when the scientific evidence supporting that claim is at best sketchy and at worst non-existent.

    I don’t think it is ever appropriate to just throw treatments at a wall to see if they stick, especially when some of them come with legitimate side effects and burdens on both the child and the family. There is a process – a real process – for determining whether a particular intervention helps a child. It’s called a study. And it should concern you that there are few, if any, studies that support the use of these treatments published in legitimate medical journals.

    Because let’s face it, you have no clue whether your child was helped by these treatments or whether your child was helped by other therapies or even the passage of time. You might THINK it helped, or even believe it did. But you don’t know.

    Or would you rather just spend your money and time without knowing?

33. 
    Michael
    March 31st, 2007
    01:15:31

    Hi Kev,

    “Michael – sounds look a very interesting paper. Is there anything else you can talk about? I understand you might be under embargo but any tidbits would be welcome. Looking forward to the ‘cast!”

    No embargo on my end. I just don’t remember too much about the details of the conversation I had, but figured I would chat about it more on a podcast.

    It just seems to me that the causes of autism seem to be emerging a bit lately. They also seem to be a variety of factors rather than a single cause.

    Take care,

    Michael

34. 
    Jennifer
    March 31st, 2007
    01:29:38

    Many parents of autistic kids note that their children have very long eyelashes. Does that mean that long eyelashes are a symptom of autism that needs treating? Do we even know that long eyelashes are more prevalent in children with autism, or is is just that kids with autism are very cute? ;)

    But seriously, no one is suggesting that kids with autism who ALSO have GI problems do not deserve proper medical treatment. Of course they do. Pain in children should always be treated, particularly if the child is unable to tell what the problem is. But does that automatically suggest that these GI problems are in any way connected with autism? After all, GI problems are very common in children in general. I personally know an NT child who required surgery to remove a seriously impacted large block of fecal matter, caused by his fear of pooping on the toilet. He deserved treatment, but that doesn’t mean he had autism.

    Maria,
    I know your son has medically diagnosed problems, which happen to coincide with those problems highlighted by DAN! as typical of autistic children. But his problems also happen to be very common in children with or without autism. Don’t you think that it is possible that DAN! is selecting those problems just because they are very common (and many times are readily treated) and assigning them to “autistic symptoms”?

35. 
    Kassiane
    March 31st, 2007
    05:37:57

    “Miss Simpson”,

    No vaccines for you huh? So you didn’t go to school? I grew up in the 80s and had vaccines. I’m autistic. GENETICALLY AUTISTIC.

    And I went to school. Maybe that’s why I know how to punctuate and make paragraphs, because I had vaccinations and could go to school? A 40 line run on sentence is extraordinarily…noncoherant.

36. 
    Ms. Clark
    March 31st, 2007
    05:53:53

    Thanks, Kassiane. :-D

37. 
    Kev
    March 31st, 2007
    06:31:18

    “Many parents of autistic kids note that their children have very long eyelashes. Does that mean that long eyelashes are a symptom of autism that needs treating? Do we even know that long eyelashes are more prevalent in children with autism, or is is just that kids with autism are very cute? ;)”

    Exactly Jennifer. ‘Association’ is a powerful word. Are GI issues associated with autism? Are long eyelashes? Is an abiding fondness for Thomas the Tank Engine?

    Non autistic people have these aspects to their lives also. But non autistic people do not exhibit the symptoms shown in the DSM.

    “It just seems to me that the causes of autism seem to be emerging a bit lately. They also seem to be a variety of factors rather than a single cause.”

    I agree with the second part of that. A variety of factors for a variety of ‘autisms’ no doubt. I’m not sure that causes are emerging though. I see a greater understanding of how some autistic peoples lives play out – medically, in this case – but I don’t know that we know anywhere near enough to start talking about causes yet.

38. 
    7
    March 31st, 2007
    17:35:54

    Both sides of the issue are full of people with lousy, lousy, critical thinking skills. I can’t believe all of the rage from the majority of people who refuse to acknowledge the possibility that SOME KINDS of autistic symptoms are autoimmune and function in a feedback loop with the GI system. Your pompous, stupid, terrified, rage. Maybe your kids DON’T have immune system irregularities, and so NOONE ELSE better have a kid who responds to this treatment. You’re just jealous. You revert back to “ooh, this is all mercury, ooh, this is all mercury” because you can’t admit that there really are sophisticated immunological hypotheses. My own child’s symptoms improved to the point of being almost indetectable when her severe allergies were treated in a matter of 3 weeks. She didn’t “develop” out of it. I’m lying? No, you fucking asshole, I’m not.

39. 
    Kev
    April 1st, 2007
    12:40:24

    Your personal anecdote is an example of your critical thinking skills 7?

    Interesting.

40. 
    daedalus2u
    April 1st, 2007
    19:45:09

    No, it isn’t mercury, it is nitric oxide, it is all nitric oxide.

    Actually, immune system activation supports the low NO hypothesis of ASDs.

    One of the things that the immune system does when it is activated is crank-up the production of superoxide, which is dismutated to H2O2, so it can diffuse to the extravascular space where myeloperoxidase uses it to destroy anything and everything that the immune system “wants” to destroy (and some stuff it doesn’t).

    Similarly, NFkB (the “master switch” of the immune system) causes expression of iNOS, which makes lots of NO and also superoxide, which also diffuses to the extravascular space where myeloperoxidase uses it to destroy stuff. The “net” result is oxidative stress, which exacerbates low NO.

    iNOS is only around transiently (about a day or so), and then it goes away, leaving the system in a state of oxidative stress (which necessarily is a low NO state).

    NFkB is inhibited by basal NO, so if you are in a low NO state, when NFkB gets activated, it causes the expression of more iNOS than it other wise would. A low NO state exacerbates over activation of the immune system.

    There is what I call the “low NO ratchet”. When there is immune stystem stimulation, NFkB is activated and causes the expression of iNOS which generates a transient high level of NO. This high NO can feed-back on the expression of eNOS and nNOS, and so reduce the constituative espression of NOS enzymes, and so lower NO levels after the iNOS goes away in a day or so. This leads to NO levels that are lower than before the immune system activation. This makes the immune system more sensitive, and the next time it is activated, causes even greater overproduction of iNOS. Every time the immune system is activated, basal NO levels ratchet lower.

    If basal NO levels get low enough, they start to impact things like mitochondria biogenesis, which then induces a permanant state of oxidative stress.

    Fix the state of oxidative stress, then basal NO levels can go back up, and normal physiology can be restored. Supplemental antioxidants don’t work to remove oxidative stress, they can actually make it worse (see JAMA article)
    http://www.ncbi.nlm.nih.gov/en.....med_docsum

    I think this may be the “cause” of the anecdotal temporal associatioin of ASD symptoms with vaccination, or with illness, or with allergies. It isn’t the mercury in vaccines, it is the immune system stimulation, which is the “therapeutic” effect of vaccines.

41. 
    notmercury
    April 1st, 2007
    21:28:40

    daedalus2u: “Actually, immune system activation supports the low NO hypothesis of ASDs.

    How does your hypothesis explain elevated NO and nitrites reported by several investigators?

42. 
    Anon, anon
    April 1st, 2007
    22:26:29

    The thing is, severe pain is very distracting. It is very well known that children undergoing painful treatments for various other diseases (or who are ill for a material length of time) are developmentally delayed: the brain focuses on that to the exclusion of other growth, and probably rightly so—survival is at stake. So for a group of children for whom there is some GI problem, treating that problem (by REAL doctors) could make a huge difference. We know that from celiacs who seem autistic, only to prove “false positive” if you can just fix the underlying problem.

    But no amount of scoping is going to change something that was formed at the very earliest stages of embryonic development in a completely different part of the body. Because the diagnostic criteria for autism describe symptoms, and those symptoms can be caused by different issues, we should not be surprised to find that some things turn out to be generated by another cause other than neurological difference. As to the other digestive issues we see in autism, the “white” diet surely must play a heavy role. I do wonder what came first, the gut problem or the white diet. ;) In my own son, we work to diversify the diet as much as possible, but he also gets chewable fiber pills that have greatly improved his situation. He likes pears and LOVES yogurt smoothies. In the “least invasive approach first” theory, we just took a straight-forward approach to the tummy and got fabulous results.

    In his case, the gut was not an issue. He’s never had bloating or any such thing: he was merely constipated a good bit from downing nothing but apples, dairy, and white bread. But I know for certain (because I looked) that his vaccines were thimerosol free. His heavy metal tests (ordered as part of diagnosis, not my idea) were perfectly clean. Home boy is just wired differently in the head, not the gut.

    And it frustrates me NO END when well-meaning people with NO idea will say to me at parties “oh, I heard that has been proven to be caused by vaccines!!” Then I have to smile and explain that the opposite has been pretty conclusively proven. Indeed, the chelation nuts have done quite a number on getting their story out into the urban legend network.

    I believe, for myself, that it has a genetic basis that is enhanced by environmental factors (ie, the experiment we’re running in this country and Western Europe in delayed childbearing, in all its interesting implications). I get angry when I think of children dying of preventable diseases, or their mothers contracting them while pregnant from their unvaccinated toddlers, because of a myth.

43. 
    Kassiane
    April 1st, 2007
    22:58:02

    It’s ALL nitric oxide?

    1 word for you: MECP2.

    And 2 more: mitochondrial diseases.

    Both proven (yes PROVEN) causes of clinical autism. Neither having much, if anything, to do with NO. Or metals for that matter.

44. 
    daedalus2u
    April 1st, 2007
    23:44:35

    Nitrite is the terminal metabolite of NO. NO has a very short half life, seconds (depending on the compartment and concentration), there has been no measurement of actual NO levels in ASDs (it is actually not possible with current techniques). Measuring nitrite and attempting to infer NO concentrations is like measuring CO2 and attempting to infer O2 concentrations. They are not (necessarily) related.

    The complimentary principle (sort of) to NO, is superoxide. Superoxide and NO distroy each other with diffusion limited kinetics. You can’t have both present at the same time, which ever one is in excess will destroy the one that isn’t. Superoxide is mostly confined to vesicles, like mitochondria, peroxisomes and microsomes. It is vectorally produced to the inside of the vesiscle. As an anion, it can’t go through membranes except through anion channels. NO is freely diffusible and so can go into these vesicles and be destroyed.

    What is important is not the absolute amount of NO or superoxide, but which one is in excess. If superoxide is in excess, then you have a system dominated by superoxide, the “oxidative stress” state. If NO is in excess, you have the opposit of an “oxidative stress state”.

    What triggers mitochondria biogenesis is NO.

    http://www.ncbi.nlm.nih.gov/en.....s=15545607

    Not enough basal NO, not enough basal mitochondria biogenesis.

    What regulates O2 consumption by mitochondria is NO. NO is intimately related to many aspects of mitochondrial physiology under normal and abnormal conditions. Many proteins in mitochondria are regulated by NO via nitrosylation during hypoxia. Many proteins are nitrated and denitrated during hypoxia. There is some thought that that this nitration and denitration is some sort of regulation, but the details remain unknown.

    MECP2 deficiency cause Rett syndrome, which has some similarities to ASDs, but it distinct from them. The vast majority of ASD individuals do not have MECP2 deficiencies. The mechanism by which MECP2 causes Rett syndrome remains unknown. I suspect it will involve NO.

    I have put some stuff on my blog about NO physiology. NO is involved in thousands of pathways. The largest class of transcription factors are the zinc finger proteins. Moving zinc onto and off of proteins is regulated by NO.

    The point I make in today’s blog is that a change in the basal NO level will affect all NO regulated pathways with no threshold. Because NO is already in the “active range”, that is it is already “controlling” something, any change in the basal level will affect the output.

    What happens when you change thousands of different pathways in one direction? It is not something that can be predicted a priori.

45. 
    Kassiane
    April 2nd, 2007
    01:14:20

    Actually, they DO know how MECP2 works….the protein that MECP2 regulates plays in turning methylation genes on & off and if it isn’t properly functioning then Rett can develop.

    Or something that looks kind of like Rett (several varieties of nonclassic Rett, including early onset Rett, which is the kind with no regression but delayed development from the beginning, and speech & hand use preserved Rett).

    And some people who look just plain AUTISTIC without the other associated features have been found to have MECP2 mutations, as well as women with sort of Rett sort of not brain conditions NOS.

    I’m SPV Rett/autistic via MECP2. This one I KNOW. Everyone has their pet theory. Too bad pet theories aren’t always right, eh?

46. 
    daedalus2u
    April 2nd, 2007
    03:10:14

    I had a comment which I posted and was lost. I am too tired now to recreate it. I will do so later.

47. 
    Friend in California
    April 2nd, 2007
    04:13:15

    Daedalus2u – I think, having read the blog post that you referred to, I have to ask for clarification. Are you hyposthesizing that modern hygienic practices are linked to autism?

48. 
    daedalus2u
    April 2nd, 2007
    12:49:24

    Yes, 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.

    The lower NO/nitrite levels then mimic the effects of “stress” (which is a low NO state), and so invoke all the “stress” physiological responses. Those responses while adaptive in the short term (to respond to the stress), are maladaptive in the long term (otherwise we would have them all the time).

    I think that all the so-called environmental toxic effects are actually caused by low NO. Endocrine disruption for example. NO regulates steroid synthesis by inhibiting the cytochrome P450 enzymes that are the rate limiting step in steroid synthesis. Steroid synthesis is pretty complicated, with multiple enzymes and multiple compounds acting both as product and substrate for different enzymes in different comparments. But lower NO levels and you affect all of the enzymes in a characteristic way. I think, that this is the mechanism by which antibiotics in animal feed increase size, feed efficiency and accelerate sexual maturity in farm animals (the actual mechanism remains unknown). The antibiotics inhibit these bacteria, lower NO levels and invoke the “stress” response of growing bigger, maturing faster and using feed more efficiently. I think that bathing is doing to us, what antibiotics do to farm animals. The age of menarche has dropped from nearly 17 150 years ago to maybe 12 now?

    ASDs are a spectrum, at one end, you have NTs, then people with Asperger’s, then people who have much more difficulty. I think the difference is (mostly) the level of NO during development in utero and early childhood. But increasing NO later does help. I have experience remarkable changes and I am now 52.

    I think that ASDs are fundamentally human traits, that all humans have to some degree. It is what makes us human. But like all evolved features, it can be pushed to an extreme and dysfunctional state, sort of like anaphylaxis. Anaphylaxis is bad, but a strong immune system is good. I presume that with enough immunosuppressants you could prevent the possibility of anaphylaxis, but then you would be extremely susceptible to infection.

49. 
    Friend in California
    April 2nd, 2007
    18:54:35

    Daedalus2u – You will forgive me, I am sure, if my initial reaction to your hypothesis is one of skepticism.
    I am in no way qualified to comment on the quality of your information or conclusions, but I guess my first question would be: What exists in the way of epidemiological evidence to support your hypothesis?
    I would assume that hygienic habits vary from location to location around the globe. Do the diseases and developmental abnormalities you are referring to in your hypothesis also vary by region? There many more specific questions that would follow this line of reasoning, most of which you have likely already considered, so I will just leave the question broad-based so you can answer as you see fit.

50. 
    daedalus2u
    April 2nd, 2007
    20:42:33

    I lost another big post.

    Yes, there is epidemiological evidence. All of the degenerative diseases which have been characterized in the literature 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. When people migrate from regions of low incidence to regions of high incidence, their incidence approaches that of their new region. People with ancestors from tropical regions tend to be hit harder by these diseases, I think because their ancestors didn’t evolve compensatory pathways to deal with the loss of NO from these bacteria during winter.

    If you look at figure 1 in this

    http://www.ncbi.nlm.nih.gov/en.....med_docsum

    the age of menarche has dropped from nearly 17 in 1850, to about 12 now. One of the health changes that occurred in that time frame was the advent of municipal water supplies and the germ theory.

    http://www.bmj.com/cgi/content.....1/DC4?fbdm

    The “conventional wisdom” that it has to do with diet seems unlikely to me. It is inconceivable that parents in 1850 would allow their children to be malnourished if they could help it. In the US, there was no inflection during the depression, suggesting that individual privation was not the cause.

    Bathing per se, has nothing to do with preventing disease. It was the removal of pathogens from drinking water that did that, and hand washing prior to food preparation. Bathing one’s body has no positive health effects (so far as I have been able to ascertain). Every culture that has a seasonal cold period has the custom of sweat baths. The use of soap and running water for bathing afterward is a very late (and I think counter productive) addition to the custom.

    In the “wild”, it would be impossible for humans to not develop a biofilm of these bacteria, which (in the absence of bathing) is stable for years.

    I think that there have been multiple technological advances that have slowly caused a decline in these bacteria. First, the advent of municipal water supplies and the germ theory. Second, the use of modern purification techniques which remove all bacteria (as opposed to use of untreated well water). Third, the use of alkylbenzene sulfonate anionic detergents which are toxic to these bacteria at ppm levels. Fourth, the advent of conditioning shampoos, which allow daily hair washing without one’s hair turning to straw. Fifth, the use of anti-microbial everything for absolutely no reason.

    These bacteria are not rare, they are universally found in all soils, all natural water supplies, including in many mineral springs. I have found them as commensal organisms on diverse eukaryotes, including clams, mussels, lobsters, turtles, earthworms. They are responsible for the first step in the process of nitrification. Most plants absorb nitrogen as nitrate. Some plants have a biofilm of these bacteria on their roots.

    A biofilm in vivo produces NO promptly (

51. 
    daedalus2u
    April 2nd, 2007
    20:56:51

    I think it truncated my post.

    A biofilm in vivo produces NO promptly (

52. 
    notmercury
    April 2nd, 2007
    22:55:14

    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.

53. 
    Friend in California
    April 2nd, 2007
    23:08:26

    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”.

54. 
    Friend in California
    April 2nd, 2007
    23:19:21

    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.

55. 
    daedalus2u
    April 2nd, 2007
    23:22:26

    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.

56. 
    daedalus2u
    April 3rd, 2007
    00:34:08

    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/en.....med_DocSum

    http://www.ncbi.nlm.nih.gov/en.....med_DocSum

    http://www.ncbi.nlm.nih.gov/en.....med_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.

57. 
    daedalus2u
    April 3rd, 2007
    00:50:18

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

58. 
    Ms. Clark
    April 3rd, 2007
    06:27:17

    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.

59. 
    daedalus2u
    April 3rd, 2007
    11:45:09

    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.

60. 
    Barbara J
    April 3rd, 2007
    12:40:49

    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.

61. 
    Tom
    April 3rd, 2007
    13:04:12

    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.

62. 
    daedalus2u
    April 3rd, 2007
    13:48:02

    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.

63. 
    daedalus2u
    April 3rd, 2007
    15:07:30

    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.

64. 
    daedalus2u
    April 3rd, 2007
    15:10:23

    I can’t seem to post here.

    look for my reply at my blog

65. 
    Friend in California
    April 3rd, 2007
    15:15:04

    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

66. 
    daedalus2u
    April 3rd, 2007
    17:49:46

    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.

67. 
    Prometheus
    April 3rd, 2007
    18:00:53

    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

68. 
    daedalus2u
    April 3rd, 2007
    18:27:04

    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/en.....t=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”.

69. 
    Friend in California
    April 3rd, 2007
    22:48:58

    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 :)

70. 
    Broken Link
    April 4th, 2007
    03:07:13

    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?

71. 
    Barbara J
    April 4th, 2007
    13:13:25

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

72. 
    anonimouse
    April 4th, 2007
    13:27:47

    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.

73. 
    daedalus2u
    April 4th, 2007
    14:21:55

    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).

74. 
    Joe Herr
    April 18th, 2007
    00:02:59

    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.

75. 
    daedalus2u
    April 18th, 2007
    01:01:30

    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.

76. 
    HN
    April 18th, 2007
    01:29:44

    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/co.....2h6t3308m/

    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.

77. 
    HN
    April 18th, 2007
    05:06:53

    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.

78. 
    notmercury
    April 18th, 2007
    19:18:11

    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?

79. 
    Friend in California
    April 18th, 2007
    19:56:25

    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!

80. 
    Tito Rajarshi Mukhopadhyay
    April 19th, 2007
    00:43:49

    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

81. 
    Ms. Clark
    April 19th, 2007
    01:23:16

    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.

82. 
    Tito Rajarshi Mukhopadhyay
    April 19th, 2007
    01:41:15

    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

83. 
    Ms. Clark
    April 19th, 2007
    02:03:33

    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…”

84. 
    Kassiane
    April 19th, 2007
    02:37:45

    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.

85. 
    daedalus2u
    April 19th, 2007
    02:40:39

    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?

86. 
    Ms. Clark
    April 19th, 2007
    02:56:20

    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.

87. 
    Kassiane
    April 19th, 2007
    03:37:52

    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.

88. 
    daedalus2u
    April 19th, 2007
    03:46:49

    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.

89. 
    Kassiane
    April 19th, 2007
    05:49:55

    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.

90. 
    Tito Rajarshi Mukhopadhyay
    April 19th, 2007
    12:26:32

    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

91. 
    Kassiane
    April 19th, 2007
    20:13:47

    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.

92. 
    generic lipitor
    May 23rd, 2007
    16:47:21

    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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• Sharyl Attkisson to receive media award
• Redwood City teacher accused of slapping, kicking special needs students
• A Multisite Study of the Clinical Diagnosis of Different Autism Spectrum Disorders
• Yale Daily News: Redefinition of autism sparks concerns
• Transcripts from the GMC hearings
• Estimating the Prevalence of Autism Spectrum Conditions in Adults: Extending the 2007 Adult Psychiatric Morbidity Survey
• Mother Jones: Rep. Dan Burton’s Legacy: Lots of Sick Kids

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• J.B. Handley Forsworn
• The blogger and the doctor
• Md. suspends autism doctor's license
• 10 deadly myths about childhood vaccines Pictures
• The Crash and Burn of an Autism Guru
• Health experts stress importance of MMR
• Todd Drezner: Learning to Embrace Autism
• Vaccines, autism, and Andrew Wakefield's wake
• The Panic Virus: A True Story of Medicine, Science, and Fear -- Grinker 168 (3): 332 -- Am J Psychiatry
• Jenny McCarthy: Still Sticking with Debunked Autism Theory and Using ‘Mob Mind’ as Excuse