Jenny McCarthy Again

2 Oct

McCarthy was at the latest TACA bunfight recently and took to the stage to give the crowd some of her patented Sale Increasing Controversial Big Fat Mouth. Her victim was a long time favourite of American news, Barbara Walters (whos now deceased sister was born ‘developmentally disabled).

About 3:15 today at the picnic on main stage jenny mccarthy in the most lisa ackerman style of feisty adorable commented that barabara walters said our kids CANT EVER GET BETTER and called her a bitch and said something about naysayers can stick her microphone up their BUTTS!
PRICELESS. This is perfect way to get sensationalistic 6:00 news attention to get this aired NOW!!!!!!!

Isn’t that lovely? I hope all those who were puzzled by the series of posts on here decrying Mccarthy’s self-appointed role as autism advocate can begin to appreciate why I – and plenty of others – feel as we do. That McCarthy is doing no favours to the autism community with this sort of behaviour. of course, some people, even within TACA realize this probably isn’t the best course of action:

What Jenny said at the picnic was for the benefit for TACA families, not for the 6 o’clock news or Entertainment Tonight. Jenny is doing a beautiful job of being our spokesperson, so let’s let her publicist and TACA’s publicist handle the media for right now. I know it was exciting stuff but let’s let this issue rest for now.

Well, no, actually. I don’t want to let the issue rest. This person has appointed herself spokesperson not just for TACA but apparently for autism itself. She needs to back off, grow up and start thinking about her actions for those of us without a celebrity income. Calling someone ‘a bitch’ at en event that you _know_ will be covered by the media is a stupid thing to do and gives the general public the idea that we’re all as childish as Jenny McCarthy. I would like once again to distance myself from this person publicly.

In the meantime, please enjoy this blog entry I found today. I don’t know who it is but I liked it.

142 Responses to “Jenny McCarthy Again”

  1. 666sigma October 8, 2007 at 12:19 #

    Joseph, you are doing exactly the same thing. The difference is that I don’t deny it.

    Jon, your digestive tract is that of a herbivore. It is not intended to digest grains. nor was it intended to digest another animal’s milk. Those are facts.

    Kev, strike four.

  2. Jon October 8, 2007 at 12:57 #

    Jon, your digestive tract is that of a herbivore. It is not intended to digest grains. nor was it intended to digest another animal’s milk. Those are facts.

    we’re evolved to be able to eat a wide range of foods, and live off a wide variety of different diets. Which includes – for most of us – being able to digest dairy. I’m not sure where ‘intention’ comes into this.

  3. Kev October 8, 2007 at 15:35 #

    _”Kev, strike four.”_

    ??? Are you lacking basic comprehension skills? Come on son, get with it, its really easy. You’ve been avoiding Joseph long before you avoided me. When Joseph is happy you’ve stopped squirming then I’ll take over.

  4. Joseph October 8, 2007 at 16:21 #

    Joseph, you are doing exactly the same thing. The difference is that I don’t deny it.

    I base my beliefs on confirmation bias, anecdotes and testimonials?

    While personal experience does tend to color one’s views, you’ll note that I mostly just discuss data and science. I won’t try to convince you of something because a friend of a friend told me this or that, or because a celebrity on TV “validated” some baseless thing I believed.

    I don’t know what it is that 666sigma wants. He’s just trolling I guess. I think he’s trying to make up for the thousands of recovered kids that were supposed to inundate us about now. Failed predictions from curebies are always fun and it seems you can always count on them as part of the discourse of the autism community.

    Sigma, did you see my most recent post? I mention you.

  5. 666sigma October 9, 2007 at 10:47 #

    Joseph, thanks for the plug. I see you have a blog of two otherwise I might have responded. I don’t feel like upping your readership.

    The one piece of information that you are missing is that only the girl has been identified to her pre-school as having autism. Out of the 4 boys, only one was identified by the school. We did tell our first pre-school, but moved our child to avoid the label. The new pre-school has not been told nor has the school noticed. So three (out of the five) are moving through schools without labels. So if we lived in CA and went to public schools, three of the five would not be identified.

    Now, I have seen a few other autistic kids, but we have not socilized with their families so my sample is not only small, it is biased.

    Your beliefs on GFCF are based on your own personal bias. Mine are based on my personal experience, as well as statements made by many other parents. You hold Jenny McCarthy in greater regard than I do.

    What do I want?

    What do you and Kev want?

    You both posted comments saying I was running. Ever since Kev has ran like a scalded dog. Yipe, yipe, yipe.

    Did I mention that my child lost their diagnosis? Did I mention that removal of casein appears to have helped?

    What I want is for a few parents to read your blog and not be swayed into doing nothing because you say there is some science behind it. Science has never proved any of your opinions on autism.

  6. Kev October 9, 2007 at 13:17 #

    _”I see you have a blog of two otherwise I might have responded. I don’t feel like upping your readership.”_

    Someone else not operating in their field? Don’t confuse the amount of commenter’s with readership son. To the trained professional your ignorance is painfully obvious.

    _”Did I mention that my child lost their diagnosis? Did I mention that removal of casein appears to have helped?”_

    This is the child that went from diagnosed to cured in 7 (or was it 9?) months right?

    In my opinion Siggy your child wasn’t autistic. If he was, he’s a miracle. How come you’re not on the front cover of some magazine?

    Yipe, yipe, yipe. I’ll get to you when you manage to stop running from Joseph. Yipe, yipe, yipe.

    But in the meantime (Yipe, yipe, yipe) please apply your professional training to the questions you’ve been running from in this thread

  7. 666sigma October 9, 2007 at 14:11 #

    Kev,

    I’m sure he’s got hundreds, if not thousands, of readers.

    I never said my child was cured or recovered. Those are your words. I said the diagnosis was removed. And you implied you were a professional. Deficits still remain, but not enough to qualify as PDD-NOS or ASD. You’re getting goofier with each post.

    My child just had their 4th birthday and it was lightyears different than the 3rd. The improvement was obvious.

    Finally, after beating around the bush, you get to your point. I never saw this before. Again, this stuff is not that important to me.

    I will re-look at the GR study when I get a chance. I’m certain that you’ve spliced the data so thin that it lacks statistical credibility.

  8. Joseph October 9, 2007 at 14:19 #

    My blog’s readership might not be at the level of LB/RB, but it does get around 400-600 unique visitors a day recently. If I may compare, that’s Autism Diva levels of readership 🙂

    Did I mention that my child lost their diagnosis? Did I mention that removal of casein appears to have helped?

    Not too often – only like 86 times. And this is evidence of what? Do we look like the kind of parents who still believe that a loss of label in autism is as miraculous as raising the dead? No Sigma, we do read autism research around here.

  9. 666sigma October 9, 2007 at 14:52 #

    I was wrong.

    The GR study shows a slightly higher rate of ASD for those unvaccinated. In terms of neurological disorders, it shows a significantly higher percentage for those who were vaccinated. I’m sure GR would argue that ADD and ADHD was a common misdiagnosis for ASD in the 90’s.

    Among boys, it does show higher rates of ASD and ADD among the vaccinated. However, for girls, ASD is significantly lower among the vaccinated while ADD is virtually unchanged.

    In cases pointed out by Kev, they have virtually no statistical credibility. I suggest a basic statistics course.

  10. Joseph October 9, 2007 at 15:08 #

    In terms of neurological disorders, it shows a significantly higher percentage for those who were vaccinated.

    You must mean, in terms of ADHD. Do you see that is was dishonest of GR to lump autism and ADHD together and claim that vaccines are a risk factor for “neurological disorders like autism and ADHD” when in fact there’s no finding relevant to ASD?

    That’s not to say that the ADHD finding is not easily explained by a couple confounds.

    The finding in boys were not statistically significant. In fact, I believe there’s a non-significant risk finding for “autism”, but not PDD-NOS or Asperger’s. Is that right?

    What do you think about their trick of removing a county they did not like and posting the resulting risk factors from that? What do you think about GR not publishing all the relevant risk factors and protective factors, such as the statistically significant protective factor for ASD in girls?

    Those are the kinds of things they could not have gotten away with in a peer-reviewed paper (or even a blog that allows comments).

  11. notmercury October 9, 2007 at 15:11 #

    Sig,
    You seem to make a lot of assumptions when it comes to the beliefs and experiences of some of the people who comment here.

    You may be surprised to know that I tried various dietary interventions and I too thought I saw improvements. My desire to believe that dietary intervention can change the course of autism was at least equal to or stronger than your own.

    However, my desire to question my observations, bias, beliefs, is greater still.

    For someone who claims to work in the pharmaceutical industry, your critical thinking skills must be a constant source of pride for your employer.

    Have you given any thought to how casein or gluten might even alter the course of a developmental disorder? Are you aware of any scientific investigation into the matter? Oh that’s right, you’d rather stick with your belief system and check your “What Would Jenny Do” bracelet.

  12. bones October 9, 2007 at 15:14 #

    Sigma-

    Unfortunately, the GR “study” wasn’t a study. Any conclusions drawn are absolutely meaningless without data transparency (eg, any Geier study).

    It cannot be replicated, and it is, therefore, pointless to speak of any conclusions.

    I’m begining to think you inflate your credentials just a tich. At the evry least, your lazy.

  13. 666sigma October 9, 2007 at 15:35 #

    Sorry, but I don’t think that much of GR or JM. I do think that JM has a good story about her son’s progress that is getting lost in the causation war between ND and EoH.

    NM, my critical thinking is not impaired. If you read my comments, we have not been 100% strict on the diet or supplementation. The effects of casein appear to be quite obvious. Under the right circumstances, I would have no problem volunteering our child for a study on the effects of casein.

    Milk is a huge allergen. That’s a fact. Man was never intended to drink cow’s milk. That’s another fact. Elminating milk is not harming my child. Periodically, we will re-introduce diary to the diet and see what happems.

    BTW, I don’t work for the pharmaceutical industry. Where did you come up with that one?

  14. 666sigma October 9, 2007 at 15:52 #

    Bones, I have wasted too much time on this topic. I don’t care that much about the GR SURVEY other than I find its results interesting. I do believe that the CDC will try to avoid doing any type of study between vaccinated and unvaccinated children at all costs. That doesn’t mean that vaccines cause any harm, but they’re not even willing to find out.

    BTW, lazy to you means that I don’t focus my energies on the things that interest you. I bust my ass on the things that matter to me.

  15. notmercury October 9, 2007 at 16:16 #

    So your argument:
    1) Milk is an allergen.
    2) Man was never intended to drink milk.
    3) It can’t hurt.
    4) I seen it wid my own two eyes.

    Welp, I’m convinced.

    “NM, my critical thinking is not impaired.”

    Clearly.

  16. Kev October 9, 2007 at 17:20 #

    _”I’m sure he’s got hundreds, if not thousands, of readers.”_

    Your numbers are irrelevant. I suggest a basic web development/marketing course 😉

    _”I never said my child was cured or recovered. Those are your words. I said the diagnosis was removed. And you implied you were a professional.”_

    So your son is _not_ recovered? And where did I imply I was a professional?

    _”In cases pointed out by Kev, they have virtually no statistical credibility. I suggest a basic statistics course.”_

    So in the _study_ (using your words) that GR performed, the stats that _they_ isolate as significant aren’t? lol…..you’re slippier than a politician on a greasy pole during election year ;o)

  17. Joseph October 9, 2007 at 18:34 #

    666sigma: You’re funny. You don’t care much about GR of its survey, but you found its results “intersting.” Plus you comment on its positive findings.

    I also find GR’s results intersting, BTW. What’s particularly interesting is the way they were spun and hidden away. Any comment on this interesting part of the survey other than to say that you don’t care that much for GR, except for its “interesting” results?

  18. 666sigma October 9, 2007 at 22:36 #

    NM, you are not required to believe. Your nonconcurrence will have no impact on me.

    Kev, you love to parse words so we will go round-and-round until one of us stops. You win. You have more time, energy and desire than I have. I answered your questions as I said I would.

    Yes, Joseph, I do find the GR’s survey interesting, but I don’t think it’s results are conclusive by any means. I agree that they spun the results, but if they hid things away you would never know.

    One interesting aspect is that boys do seem to be more affected by vaccines than girls and we all know that ASD and ADD are far more common in boys than girls. That is interesting.

    The GR survey is biased because parents with children with developmental challenges were more likely to respond, but that doesn’t make the results wrong. It makes them unreliable. I believe the real goal of this survey was to try to coerce the government, CDC or scientific community to do a real study on vaccines role in developmental delays and disorders.

    Besides, there have been several studies on thimerosal and MMR based on far less information than this survey. Thimerosal was largely speculation and the Wakefield study (even if it had been valid) was a handful of kids.

    You do not have to agree with me. But I do enjoy exposing your bias.

  19. notmercury October 9, 2007 at 23:23 #

    While we are exposing bias, how would you design a study on the effects of casein? How would you design a study to determine if vaccines play a role in autism, or not?

    If you feel so strongly about it, put something together and get some science done. Do something constructive with your time and brainpower for a change. Come on answer man. Enlighten us with your Random wisdom.

    btw, Humans were never intended to communicate through typing. It’s a fact.

  20. Joseph October 10, 2007 at 00:00 #

    You have really exposed me, Sigma, that’s for sure.

    What I mean by “hiding things” is that they did not report statistically significant protective factors. They simply pretended they weren’t there. They must have known about them, since they obviously calculated all the measures they could come up with in order to cherry pick the ones they wanted.

    The GR survey is biased because parents with children with developmental challenges were more likely to respond, but that doesn’t make the results wrong. It makes them unreliable.

    In this case it does make them wrong, simply because of the reasonable expectation that response rates in the vaccinated population would not be the same as those in the unvaccinated population, by far, so the bias could not have affected both populations the same.

  21. 666sigma October 10, 2007 at 13:23 #

    Joseph, you are correct that it is unlikely that both groups were affected exactly the same. However, the facts do support the premise that those affected by autism (regadless of vaccination schedule) were more likely to respond to the GR survey. Morevoer, it does not mean the results are wrong.

    The fact that the rate of autism reported by both groups was roghly 5 times the reported rate in the US is a strong indicator that those affected by autism were more likely to respond. However, it is impossible to tell which group was more biased. I’m certain that you feel that it was the vaccinated group, but you just can’t tell.

  22. Joseph October 10, 2007 at 13:43 #

    The bias in the vaccinated group was a factor of 5. This is not surprising. The vaccinated group is essentially the general population.

    We really don’t know what the bias was in the unvaccinated group. Parents who don’t vaccinate their children were probably much more likely to continue with the survey anyway, regardless of autism or anything else. In fact, GR found that 6% of those surveyed had unvaccinated children, whereas a prior published survey had found that only 0.3% of young children in the US had not ever been vaccinated.

    So I think the fact that GR failed to find a risk factor, given that obvious bias, must have been simply due to genetics in combination with the current media construction of autism.

  23. 666sigma October 10, 2007 at 14:05 #

    Pure speculation.

    However, I’m done beating a dead horse. You can go on and keep kicking if it makes you feel good.

  24. Kathryn October 10, 2007 at 14:08 #

    My first son died of a rare metabolic defect – a Fatty Acid Oxydation Disorder. When my second son was diagnosed with Autism at 20 months, he also had intestinal problems. I took him to a DAN doctor and began the diet and supplements. It not only helped his digestion problems, but he began to make eye contact and began interacting with us. He IS a different child.

    My question is: Does he really have Autism or does he have another rare metabolic disorder that causes autistic characteristics? He doesn’t have the same Fatty Acid Oxydation disorder – we had him genetically tested. How many other children may have these metabolic disorders vs Autism?

    I’ve researched Autism, and there’s just so much we don’t know. For so long the medical community has said it is “untreatable.” So, of course, I’d rather listen to parents who say, “Hey this works!” And because of these parents, and these “kook” doctors, my son IS better.

    I’m not naive enough to believe my son will be cured and I agree, there are plenty of people out there who prey on desperate parents’ wallets. I’m not convinced the vaccines are to blame. But what am I supposed to do, when 50-75% of parents say their ASD children improved with Chelation Therapy? Am I really going to be able to watch my son struggle later in life – wondering – maybe if I’d tried that . . .

    I mean, I already know that the “untreatable” is not true. I have strong evidence that this IS a metabolic disorder rather than Austism. Maybe my son DOES have a problem metabolizing metals.

    I don’t know. I just ask that before we start calling Jenny McCarthy and DAN doctors quacks, we need to be able to prove it and so far, they have more concrete evidence – the results.

  25. HN October 10, 2007 at 15:17 #

    Kathryn, My deepest sympathy for your loss and heartbreak.

    Kathryn said ” But what am I supposed to do, when 50-75% of parents say their ASD children improved with Chelation Therapy? ”

    Cite please. Where is this documented?

    Because it goes against real studies. Like this one on children with real heavy metal poisoning (lead):
    PEDIATRICS Vol. 114 No. 1 July 2004, pp. 19-26 “Effect of Chelation Therapy on the Neuropsychological and Behavioral Development of Lead-Exposed Children After School Entry ”

    Conclusion. These new follow-up data confirm our previous finding that the TLC regimen of chelation therapy is not associated with neurodevelopmental benefits in children with blood lead levels between 20 and 44 µg/dL (0.96–2.17 µmol/L).

    Kathryn continued “I don’t know. I just ask that before we start calling Jenny McCarthy and DAN doctors quacks, we need to be able to prove it and so far, they have more concrete evidence – the results.”

    Cite please. Where is this documented? Can we find it on http://www.pubmed.gov? It is up to THEM to prove it to us. One way to do that is not through anecdotes, but through actual collection of real data.

    What has been studied, documented and published in many journals are many previous thought of cures did not work. For example, secretin, I am at my two link limit, but this describes it with links:
    http://photoninthedarkness.com/?p=109

    There has been a small study on just over a dozen kids on the GFCF diet… :
    J Autism Dev Disord. 2006 Apr;36(3):413-20.
    The gluten-free, casein-free diet in autism: results of a preliminary double blind clinical trial.

    The conclusions included “Group data indicated no statistically significant findings even though several parents reported improvement in their children.”

    Did you notice that the parents reported good results, but the testing done by the researchers did not show it.

    The plural of anecdote is not data.

  26. Gonzo October 10, 2007 at 17:10 #

    HN said – It is up to THEM to prove it to us.

    Thank you! Exactly – it is up to the doctors and the pseudo doctors out there to prove their claims to US, the patients and/or parents. With peer reviewed, published, scientifically based studies. If they want to sell us their cures or treatments, THEY need to do the legwork of proof.

    Not through random testimonies and anecdotes found through Google.

  27. Kathryn October 10, 2007 at 18:29 #

    I read the 50-75% found improvement from Chelation in the books “Healing the New Childhood Epidemics” by Kenneth Bock and “Changing the Course of Autism” by Bryan Jepson.

    And before you discount them as quacks – how many children with developmental disorders have you seen? And how many have you helped? And which therapies have worked in your practice? And how are these results quantifiable?

    The heavy metal study you mentioned was for “..children after school entry.” The DAN doctors are in agreement with that. Chelation has decreased effects on older children, which is why Early Intervention is important.

    I’m also aware of the Secretin debate. And DAN doctors are in agreement that there is no conclusive evidence. But AT LEAST THEY WERE LOOKING.

    Listen, I’ve taken everything I’ve read and heard with a grain of salt. I haven’t jumped into anything. The most disturbing thing in my research is how little there is! Where has the medical community been?

    The second most disturbing thing I’ve found is that the number of doctors trying to refute the DAN protocols seems exponentially larger than the number of doctors actually trying to solve the Autism puzzle.

    So, while the medical community is busy agruing over who’s right and who has sold out to drug companies. I think I’ll take cues from the dedicated doctors, and loving parents who’ve stepped up, tried different therapies and seen improvement in their children.

  28. Joseph October 10, 2007 at 18:30 #

    Kathryn, sorry to hear about your first child. As to the second child, well, apparently you did not find a specific treatable disorder, right? What you tell us is no different to any anecdote of an autistic child making progress. Do you believe that autistic children generally don’t make progress unless you treat them?

    I think my recent all-purpose answer is in order. See also this.

  29. Joseph October 10, 2007 at 18:32 #

    Kathryn, I’m sorry, but you must be new to autism discussions. You see, unqualified claims such as “50% recovery rates!” need to be taken with a pint of salt. For example, Bernie Rimland used to claim that Secretin had a 70-75% improvement rate. Nowadays you’ll hear similar claims about Me-B12, L-Carnosine, HBOT, etc. They are all likely false, and are the result of people taking advantage of the placebo effect.

  30. notmercury October 10, 2007 at 18:44 #

    Books written by chelationists are a poor substitute for real research. It’s easy to embrace these books though when they are offering hope which is really what many of us want to hear.

    Kathryn, you won’t be convinced by anything you read here that goes against what you want to believe but do yourself a favor. Check legitimate sources of scientific research before you accept figures that can’t possibly be accurate. With response rates that high the chelation lists would be populated with thousands of parents of no longer autistic children.

  31. Matt October 10, 2007 at 19:02 #

    And DAN doctors are in agreement that there is no conclusive evidence. But AT LEAST THEY WERE LOOKING.

    no, they aren’t looking. They are experimenting. Sometimes rather dangerous experiments, often mild experiments.

  32. HN October 10, 2007 at 19:09 #

    Kathryn said “I read the 50-75% found improvement from Chelation in the books “Healing the New Childhood Epidemics” by Kenneth Bock and “Changing the Course of Autism” by Bryan Jepson.

    And before you discount them as quacks – how many children with developmental disorders have you seen? And how many have you helped? And which therapies have worked in your practice? And how are these results quantifiable?”

    Neither Kenneth Bock nor Bryan Jepson are consisered reputable researchers when compared to the vast amount of published work by these universities:
    http://www.nimh.nih.gov/research-funding/scientific-meetings/recurring-meetings/iacc/nih-initiatives/staart/index.shtml

    Actually, I am a parent of a 19 year old son with a severe speech and language disorder. In the course of his education and treatment I have met many other parents of similar children, including several children with different flavors of autism. He has also been treated by multiple neurologists, OT/PTs and speech therapists. His regular ed. schools have also had programs for his disability along with deaf and hard of hearing kids.

    I would wager a guess that I have known more disabled kids of varying types than you have.

    I am also fortunate in that I live very close to one of the STAART universities where real research on autistic children is occuring. When my younger son was three years old he participated in one research study on an autism evaluation protocol. They wanted to see how a “normal” child would react to the play and conversation scenarios that were to be used.

    So there is _real_ science going on. You just have to learn how to look for it. Learn how to use PubMed, check for information on various organizations like the American Speech and Hearing Association and the American Occupational Therapy Association.

    I would also suggest you read these books for insight on research and therapies:
    _No Time for Jello_ by Berneen Bratt
    _Unstrange Minds_ by Roy Richard Grinker
    _Not Even Wrong_ by Paul Collins

    I think you need to understand that the point of the chelation study was to show that even for REAL cases of heavy metal poisoning, chelation does not improve cognition. There are also case reports showing the same goes for younger chilren:
    http://www.cmaj.ca/cgi/content/full/168/2/201

  33. HN October 10, 2007 at 19:24 #

    notmercury said “Books written by chelationists are a poor substitute for real research. It’s easy to embrace these books though when they are offering hope which is really what many of us want to hear.”

    About Kenneth Bock:
    http://www.casewatch.org/depos/bock2004.shtml
    “At the time of the deposition, Bock was also president-elect of the American College of Advancement in Medicine, a group whose primary activity has been to promote nonstandard usage of chelation therapy.”

    Bryan Jepson was part of Thoughtful House, a place that sells questionable treatments.

    Reading books by them is similar to reading one of Glenn Doman’s books (_How to Treat You Brain Damaged Baby_, _How to do???_,) which are just advertisements for his clinic in Pennsylvania… and the subject of Bratt’s _No Time for Jello_ book.

    Their books are most likely ads for their treatments. You would be better off reading the ones I listed instead.

    Check out the record of some of the DAN! docs here:
    https://leftbrainrightbrain.co.uk/dan-doctors-us.html

    (one of the authors of the book you referenced is listed there!)

  34. Kathryn October 11, 2007 at 14:24 #

    So, are you saying that ALL of the parents who say their children have improved are lying or just wishful thinking? I’m really confused on that part of your argument. If it doesn’t exist in a medical published text, it is absolutely not true?

    And I’m not trying to be rude, but I have noticed that the “naysayers” do tend to be parents of children who the program hasn’t helped. To me, as a parent, to read and hear of other children improving and even losing their diagnosis while mine hasn’t budged would be maddening and infuriating. So, as much as I need to question my wishful thinking, you need to question your motivation for discounting thousands of parents’ “anecdotal” reports.

    I must say, that, I don’t blame these doctors for not publishing results. The time it would take to defend their results against the naysayers would be excrutiating and would take away from their continued work for these kids. AND no matter how well they defend their results, there will always be those, like you, who refuse to believe! So, why publish?

    And none of what you’ve said answered my questions about – maybe this isn’t Autism. Maybe it’s a metabolic defect that a lot of kids have and the program seems to help THESE kids and NOT truly autistic children.

    These doctors are peddling nutrition. I imagine THIS is why the doctors are so discredited! They’re experimenting with nutrition and not prescriptions! The horror!

    And all of you have misquoted what I’ve said, I never said “50% recovery rates” – I said 50-75% of parents saw improvements. I’ve already told you I don’t expect to ever have a neuro-typical child. What I did have was a child who sat in a corner, turned a car over and spun the wheel for hours and I now have a child who uses sign language and makes excellent eye contact and is engaging and responsive. And Luke made these improvements with NO MEDICAL TEXTS proving he would. He just made a change in his diet and increased vitamins.

    You guys are right. I’m going to believe what I’ve witnessed rather than all of the evidence that you provide me that says Luke will not improve with the diet. You’ve already been proved false when it comes to my child. You can keep naysaying but I hope other parents don’t listen to you.

  35. HN October 11, 2007 at 14:43 #

    Kathryn wrote: “So, are you saying that ALL of the parents who say their children have improved are lying or just wishful thinking? I’m really confused on that part of your argument. If it doesn’t exist in a medical published text, it is absolutely not true?”

    No. That they are biased and untrained, and do not recognize the difference between normal (albeit delayed) development versus what their hopes are.

    You said “And all of you have misquoted what I’ve said, I never said “50% recovery rates” – I said 50-75% of parents saw improvements. ”

    And yet, it is an unconfirmed observation from a biased source. You will have to learn the difference between bias and unbiased observation.

    You conitinued “You guys are right. I’m going to believe what I’ve witnessed rather than all of the evidence that you provide me that says Luke will not improve with the diet. You’ve already been proved false when it comes to my child.”

    Except that you already stated he used sign language.

    My son’s communication and attitude improved immensely with the introduction of sign language and NO change in diet. While he is not autistic, the mainstream therapy from a qualified speech langauge therapist gave him much more than any change of diet.

  36. Kathryn October 11, 2007 at 15:01 #

    He uses sign language NOW. Before the diet, he wouldn’t even look at me, much less notice what I was doing with my hands. There’s no way he could have learned sign language then. Now, he watches and imitates everything I do.

    But this has just been my biased and untrained observation.

  37. Joseph October 11, 2007 at 15:41 #

    But this has just been my biased and untrained observation.

    That’s a refreshing indication of rationality. We are all biased. We all make observations and draw conclusions from them. What I hate is people proclaiming to know “the truth” and making generalizations based on their personal experience or the anecdotes of others. I generally don’t mind people otherwise speculating and hypothesizing.

  38. Sonny October 11, 2007 at 18:56 #

    And none of what you’ve said answered my questions about – maybe this isn’t Autism. Maybe it’s a metabolic defect that a lot of kids have and the program seems to help THESE kids and NOT truly autistic children.

    I see the “truly autistic children” phrase used by parents in denial. I think for some people, it is a lot easier to think that your child has something more exotic.

    I do think that some parents of asd kids should pursue more genetic tests or tests for disorders other than asd. Recently on a support board, a mother was being counseled about a regression that her niece was going through. She had been talking and walking and was now not saying a thing and sort of lying on the floor.

    They were all saying that it sounded like asd–was if after a vaccine? Well, the post set off alarm bells with me and I told her to urge her sister to go to the ER. She posted later that

  39. Steve D October 11, 2007 at 19:14 #

    Kathryn –
    Let me try a clear and simple explanation of why you may be wrong. I say may because none of us really know, do we? The difference between you and the people you are discussing this diet/improvement issue with is that we realize we don’t know.

    Okay, I have an autistic son. He has “improved” (I’m using the same intended meaning as you are). We did not impose an elimination diet upon him. Therefore, his “improvement” was not a result of the GFCF diet. Easy enough.

    You have an autistic son. He has “improved”. You did impose the GFCF diet upon him. You are now attributing his “improvement” to the diet. You are assuming that correlation = causation. This is a tremendously tempting belief, but not necessarily true. You simply do not have enough information to know. No matter how many times you say you know, you simply do not. You believe. The scientific method is designed to test your “hypothesis” that GFCF diet causes improvements in ASD individuals.

    Well, at least one study has been completed on this hypothesis. The results were that the GFCF diet does not show statistically significant impact on improvements in ASD individuals. Does this close the issue? No. But it provides more than sufficient evidence that you should question your belief. Have you outruled all possible alternative explanations for the improvement? Perhaps, but unlikely.

    You are not dealing with bitter parents who are grumpy that “it” worked for them but not for us. You are dealing with rational people who understand that we all are subject to bias and self-delusion.

  40. notmercury October 11, 2007 at 19:55 #

    You post was cut off Sonny. What did it turn out to be?

    Something like that could be a genuine neurodegenerative disorder but you wouldn’t want to say anything to panic the mom. Good advice to get to the ER.

  41. Sonny October 12, 2007 at 00:15 #

    Sorry, NM. I am having trouble with posting lately.

    Unfortunately, it was a rapidly growing brain mass. I don’t have more info than that, whether it was a tumor or benign/cancerous. The neuro told the mother that a day or two longer probably would have been fatal. She posted that it was about to be removed after a draining procedure had been done. It’s been weeks since she posted and I think about it often. Hope they are all okay.

    I see mothers tell other mothers to deny the fragile X test–“What difference does it make to therapy anyway? They just want the extra money”–as a way of asserting power over the medical establishment. How sad that the medical care of the child becomes a game of one-upmanship.

  42. Infinity Auto Insurance October 14, 2007 at 16:12 #

    Hello, Very nice place you have here. You?ve done a good job & awesome blog on Autism news and opinion! infinity auto insurance

Comments are closed.

%d bloggers like this: