A Note to the Autism at About.com Community

Just out of curiosity, which part of the discussion did you find to be problematic? I looked over the google cache of the page and I did not see anything that was particularly egregious in the comments that I could see (up to about 74).

Perhaps you could, without calling specific people out, give a little more detail on what you found to be problematic so that the same mistakes could be avoided in the future?

I think there were a lot of good comments made by many people on that post and it is a shame to see them all disappear.

Lisa -
To me, deleting the whole thread was similar to swatting a fly with a sledge hammer or doing major surgery for a cough.

I disagree that the comments became abusive. To me, that is too strong a word to describe any of the comments on that thread. If the conversation was getting a bit heated, you could have removed the last few comments and stopped accepting more comments, rather than deleting the whole thread.

The news coverage of the Wakefield et al issues (in press, radio, & TV) has for the most part been incredibly one sided and inaccurate. Good journalism allows for both sides to have a say. I spent a lot of time posting comments to try to express that there are other sides to this story. It is unfortunate that my (& other) comments on this thread are now gone.

Also gone is your ground-breaking statment that, “I don’t think there’s a question that vaccines can have a negative neurological impact… and given that ‘autism’ is a set of symptoms which can come from any cause, it seems almost certain that some cases of autism are causally linked to vaccines,” which was in comment #58.

I am reminded of the article Drug Test by Daniel Schulman published about 5 years ago in the Columbia Journalism Review. An excerpt:

“A reporter for a major media outlet, who did not want to be identified for fear of retribution, told me that covering the thimerosal controversy had been nearly ‘career-ending’ and described butting heads with superiors who believed that the reporter’s coverage – in treating the issue as a two-sided debate – legitimized a crackpot theory and risked influencing parents to stop vaccinating their children or to seek out experimental treatments for their autistic sons and daughters. The reporter has decided against pursuing stories on thimerosal, at least for the time being. ‘For some reason giving any sort of credence to the side that says there’s a legitimate question here – I don’t know how it becomes this untouchable story, I mean that’s what we do, so I don’t understand why this story is more touchy than any story I’ve ever done.’”

I agree that there were some great comments on the thread.

The problem is that asking folks to calm the tone didn’t seem to help… and while I absolutely DO want open debate and conversation, I DON’T want those debates and conversations to wind up with the tone of a hornet’s nest!

One of the toughest issues with this site is the fact that many newcomers to autism find it as one of their first points of reference. I want to be sure they are able to join in the conversation and feel that they have a voice and will be heard.

I’m also loathe to get involved with too much individual taking-to-task. I may feel like I know you guys well through our blog interactions, but the truth is I don’t know any of you personally, and I don’t know your history with one another.

Sorry to take such a draconian approach; it’s only happened once before, and I very much hope not to do it again!

Lisa

My 2 cents,

This is Lisa’s/about.com’s site.

Their sandbox–they make the rules.

Anyone that doesn’t like the rules is free to take their shovel and pail and go play in a different sandbox.

W&N

Hi Twyla,

What do you expect? In this case the legitimate news coverage is one-sided because the facts are so one-sided.

Now the essence of your position is that basically the entire world (Scientific/Medico/legal/political) is wrong, and now so too is the professional news coverage.

Or maybe your side is wrong? Maybe your sources aren’t reliable?

Reminds me of the infamous Wakefield Monkey studies.

Scientifically they were totally bogus–obviously nothing more than marketing ploy$. And they were flagrantly unethical.

These problems have been well documented online but I can’t find any good-faith attempt to address them on AoA, GenR etc, etc….I can find scatological attacks on the people that brought attention to the problems with the monkey studies.

What happens now that the journal has forcibly withdrawn the paper from publication?

The only response I have seen from the Wakefield supporters was more personal attacks. All just a way to avoid the scientific and ethical facts of the story…

W&N

I have great respect for those who take control so all can feel free to comment. When a site has no boundaries and is a free-for-all, that’s what readers see. Once the boundaries are set forth, that’s what those who comment will follow.
It is a shame the whole topic had to be deleted, however it then more protects those who were warned than deleting only their comments for everyone to see. Lisa did the right thing, and instead of questioning her judgement and asking her to justify her actions which is far out of line, all we need to do is acknowledge her effort to keep the peace.

I was not attempting to question Lisa’s judgement or her right to take the action that she did. This is clearly her site and, as such, she gets to make the rules.

I even agree with the principal of what she did it – I have a policy on my site of deleting any comments that are personal attacks and while I have not had to do so often, I have done so on occasion.

However, I was just confused as to what specifically she saw that was problematic (again, non-judgement, just curious). It did not look like any of the comments that I saw were that problematic and it looked like the discussion was winding down, so I was not sure if it was something that was said earlier in the conversions (ie did I stick my foot in my mouth too many times) or was it a later comment that I missed that was the reason.

But, since she does not care to elaborate, that is the end of the matter as far as I am concerned.

Lisa…you did the right thing.

My comment was overall, and not directed towards you, MJ. You do have a good point, a set of basic rules would be helpful for some, but I think most of us already know what internet etiquette is.

The google cache does not show every post, it only showed my last #74. It’s better if Lisa didn’t elaborate, that would then defeat the purpose of deleting the topic. Deleting the whole topic also demonstrates how a few will effect the whole.

The message I get is follow etiquette or the whole topic will be removed. It gives a far better incentive, don’t you think?

The message I got is that perfectly valid comments can be censored for no reason. If some comments are offensive, censor those comments.

Twyla, I think you know that I don’t censor people based on the content of what they have to say relative to issues such as causes of or treatments for autism.

I asked people twice to moderate the very personal tone of their comments, and they wouldn’t do so.

Had I cut just some comments, I know I would have been told that I was discriminating on the basis of content. That’s why I simply cut them all.

This particular site, unlike many blogs, is not specifically focused on debate (though debate is welcome). That’s in part because its mission, to a large degree, is simply to provide basic information in the form of articles and links. Many of the people who come to this site are brand new to autism, and completely unaware of the complex politics we often discuss.

While debate is welcome, I don’t want to create an atmosphere that makes newcomers feel that they’ve stepped into the middle of a hornets nest. Rather, I’d hope that they will feel that they’re welcome to come in, say hello, and learn more.

Given that everyone commenting on the Lancet article would like newcomers to hear their perspective, I’m hoping you’ll all understand and respect my request for civility.

Lisa

Lisa, you said -

“While debate is welcome, I don’t want to create an atmosphere that makes newcomers feel that they’ve stepped into the middle of a hornets nest”

Actually, I would disagree with you here. One of the problems you face as a parent with a newly diagnosed child is attempting to grasp all of the information and all of the issues out there – and there are a lot of them.

What people are first exposed to is going to shape their opinions for at least a while and I think it would be helpful for newcomers to realize that there are multiple valid opinions – even on issues like Wakefield and vaccinations – and that these discussions can sometimes get heated.

Most of the other popular sites have a strong bias one way or the other and very little discussion from the “opposing” side. As a result, people who land there don’t realize that there is more than one way of looking at the issue.

I know I would have welcomed that knowledge three years ago when I first starting looking into autism.

“Had I cut just some comments, I know I would have been told that I was discriminating on the basis of content. That’s why I simply cut them all.”

So the lesson is that if a person (or persons) don’t like the tone of the comments all they have to do to get the entire conversation wiped is to be obnoxious? Doesn’t that give them the power to censor everyone’s words rather then just get their own comments censored?

My opinion is that it is it better to censor one or two people and be accused of being biased instead of giving other people the power to stop the entire conversation.

But, that is just my opinion, and, as this is clearly your site, you make the rules and if we wish to comment here we have to abide by them.

MJ – yes, I agree that folks will quickly discover controversies within the autism community, whether they come to this site or any other.

But it’s important, I feel, to make it possible for “newbies” to enter the conversation without fearing that a flying plate will whack into them as they say hello!

In other words, I know that the people commenting on this site have positive intentions – and I would hope that those positive intentions could be reflected in the tone of the conversation.

As regards the notion that a person can simply behave like a jerk in order to shut down conversation – here’s my feeling about that.

There are individuals out there who would do that, and they are trolls. I can recognize a troll when I see one, and address them individually.

But honestly, no one in this conversation is a troll. This is a group of well-intentioned individuals with strong feelings expressing themselves. For whatever reason, on that particular thread, the conversation got out of hand – but that’s not because one person behaved trollishly. In fact, I could see that most of the people IN the conversation were fine with the level of confrontation… but some were not. I asked folks to tone it down twice, and they either wouldn’t or couldn’t.

If this were simply a personal blog (and not a medically-reviewed website with many parts and many different readerships) I wouldn’t have cut the comments. But because I’m trying to welcome a wide range of people, I want to keep the conversation civil, and avoid pushing anyone away.

One possible solution, if you’re interested, is to take the more heated personal debates to the forum on this site… which would allow individuals to continue heated debate as they choose, while allowing the blog comments to be a bit more subdued.

Best,

Lisa

Lisa, you said, “its [this site's] mission, to a large degree, is simply to provide basic information in the form of articles and links.” My motivation was & is to provide basic information. I don’t expect to convince (for example) ANB, W&N, or Sandy of anything, but I feel it is important for opposing views and sources of information regarding Wakefield et al to be presented so that other readers know that there are other sides to this story. For the most part, the news reporting on this has been quite one sided.

Usually (with rare exceptions), I’m pretty good at letting the various barbs slide off me and not responding in kind. My goal is not to one-up or offend someone but just to present information and viewpoints.

You said, “Had I cut just some comments, I know I would have been told that I was discriminating on the basis of content. That’s why I simply cut them all.” I would not have protested at all if you had ended the commentary at some point, a bit retroactively — deleting all comments after a certain point and not allowing any further comments. Does this site have the ability to close off comments to a post?

And I don’t think you should be afraid to delete certain specific comments, even if people complain. That’s part of your role in managing the blog, and you know that you are never going to make everyone happy. You mentioned that you don’t know us or our history with each other, but I don’t see that as a hindrance, as you would be making judgements purely based on what is posted and whether the comments are a positive or negative contribution to your readers in general.

Like MJ, I was thinking that this approach of deleting the whole thread could give anyone the power to delete info/comments they don’t like, just by staging a heated abusive debate.

Up until now, I have always really appreciated when you stepped in to tell us to tone it down and be civil. I really do appreciate you wanting to keep the conversation polite, in the best sense of the word, and not hostile, unpleasant, vindictive, etc. I do not understand the level of vitriole in many debates, and often feel like quoting Rodney King, “Can’t we all get along?”

Just to clarify any apparent incongruity, duplication, or unresponsiveness, FYI I posted my last comment before I saw Lisa’s last comment.

Is this new and interesting study giving us a hint that autism is NOT present at birth?

Autism’s earliest symptoms not evident in children under 6 months
Condition is characterized by a slow decline rather than an abrupt loss of skills, study says
(SACRAMENTO, Calif.) — A study of the development of autism in infants, comparing the behavior of the siblings of children diagnosed with autism to that of babies developing normally, has found that the nascent symptoms of the condition — a lack of shared eye contact, smiling and communicative babbling — are not present at 6 months, but emerge gradually and only become apparent during the latter part of the first year of life.

Researchers conducted the study over five years by painstakingly counting each instance of smiling, babbling and eye contact during examinations until the children were 3. They found that by 12 months the two groups’ development had diverged significantly. Intentional social and communicative behavior among children developing normally increased while among infants later diagnosed with autism it decreased dramatically. The study is published online early and will appear in the March issue of the Journal of the American Academy of Child & Adolescent Psychiatry.

My son reacted badly to his first series of shots, had I trusted my instincts I believe he would be fine today, instead I trusted the pediatrician who didn’t think a 105 temp was a big deal, and ,even though , I put it off for a year, the second shot took away all of his verbal and many of his social abilities. I can flip through pictures and see the once bright eyed smile transformed to a droopy sick eyed and very ill looking child , a condition that persisted for months. The measle shot probably would have taken him “out” in the sense of adding the intestinal problems ,skin conditions, etc. that we experienced with my sister’s child, had we gotten it on “time”. I don’t for a minute doubt that Wakefield is correct in his finding measles virus in the sick study group, however, I believe the measle virus is enhanced by the dtp’s that precede it/given at same visit/or closely follow it. That information has been available long before Wakefield, we know/knew that the dtp suppresses the immune system.

While many illnesses and allergies have been associated with the dtp, in the case of measle virus in the gut and Wakefield’s findings.

I find this comment telling. The time has run out on genetic studies we are losing too many children to autism, the focus clearly needs to be on vaccines.

“pertussis toxin has been shown to prolong intestinal hypersensitivity to antigens present in the digestive system at time of pertussis administration. (23) please note 23

Acknowledgment: Some of the reference material quoted here was obtained from the writings of Dr Viera Scheibner

References
1.Odent MR, Pertussis vaccine and asthma; is there a link? JAMA, 1994; 271:229-231.
2.Alm JS et al, Atopy in children of families with anthroposophic lifestyle, Lancet, May 1, 1999; 353:1485-1488.
3.Shaneen SO et al, Measles and atopy in Guinea-Bissau, Lancet, June 19, 1996; 347:1792-1796.

4.Kemp T et al, Is infant immunization a risk factor for childhood asthma or allergy? Epidemiology, November, 1997; 8(6):678-680.
5.Eibl M et al, Abnormal T-lymphocyte subpopulations in healthy subjects after tetanus booster immunization, (letter), NEJM, 1984; 310(3):198-199.
6.Sutter RW et al, Attributable risk of DTP (Diphtheria-Tetanus-Pertussis) injection in provoking paralytic poliomyelitis during a large outbreak in Oman, Journal of Infectious Diseases, 1992; 165:444-449.
7.The Hazards of Immunization, Sir Graham Wilson, Athlone Press, University of London, 1967, Pages 265-280.
8.Personal Communication, Dr. Viera Scheibner, 2002.
9.Black S et al, b-CAPSA 1 Haemophilus influenza type b capsular polysaccharide vaccine safety, Pediatrics, 1987; 79:321-325.
10.Daum RS, Sood SK, Osterholm, MT et al, Decline in serum antibody to the capsule of the Haemophilus influenzae type b in the immediate post-immunization period, J Pediatr, 1989; 114:742-7.
11.Storsaeter et al, Mortality and morbidity from invasive bacterial infections during a clinical trial of acellular pertussis vaccines in Sweden, Pediatric Infect Dis J, 1988; 7:637-645.
12.Jeffreys R, T-cells and vaccination, Lancet, 2001; 357: 1451.
13.Tanchot C, Rocha B, Peripheral selection of T cell repertoires: the role of continuous thymus output, J Exp Med, 1997; 186:1099-1105.
14.Parfentjev IA, Bacterial allergy increases susceptibility to influenza virus in mice, Proc Soc Exp Biol Med, Nov., 1955; 90:373-375.
15.Brody JA, Overfield T, Hammes IM, Depression of tuberculin sensitivity by live viral vaccines, NEJM,1964; 711:1294-1296.
16.Brody JA, McAlister R, Depression of tuberculin sensitivity following measles vaccination, Am Rev Resp Dis; 1964; 90:607-611.
17.McChesney MB, Altman A, Oldstone MBA, Suppression of lymphocyte function by measles virus is due to cell cycle arrest in G1, J Immunol, 1988; 140:1269-1273.
18.Nicholson JKA et al, The effect of Measles-Rubella vaccination on lymphocyte populations and subpopulations in HIV-infected and healthy individuals, J Acquired Immune Deficiency Syndromes,1992; 5:528-537.
19.Craighead JE, Report of a workshop: Disease accentuation after immunization with inactivated microbial vaccines, J Infect Dis, 1975; 1312(6):749-754.
20.Imani F, Kehoe KE, Infection of human B lymphocytes with MMR vaccine induces IgE class switching, Clinical Immunology, Sept., 2001; 100(3):355-361.
21.Akosa AB, Ali MH, Khoo CT et al, Angiolymphoid hyperplasia with eosinophilia associated with tetanus toxoid vaccination. Histopathol, 1990, 16:589-593.
22.Suko M, Ogita I, Okudaira H, Preferential enhancement of IgE antibody formation by Bordetella pertussis, Int Arch Allergy Appl Immunol, 1977; 54:329-337.

23.Kosecka U et al, Pertussis adjuvant prolongs intestinal hypersensitivity, Int Arch Allergy Immunol, July, 1999; 119(3):205-211.

BarbaraJ – hadn’t seen the study you mention in #16; will look into it. Had been under the impression that some studies were seeing signs of autism in the youngest infants, but perhaps (again!!!) we’re seeing subgroups.

I have to say that my own son showed no overt signs of “differentness” that I (or anyone else) noticed until he was somewhere around 2.5 year old.

Thanks for that,

Lisa

Interesting article, odd place to include it however. It would not be too easy to determine autism at birth, but that does not mean it isn’t or couldn’t be present. It means it’s not identifiable in means of recognizing symptom’s (babies having a repetitive cry or coo? They’d call it colic. Fixated on one baby toy… babies don’t play with toys. Babies can smile but it’s an involuntary muscle movements) Recognizing autism at 6 months is a leap compared to being 2 or 3 year olds. Right about at 6 months is when a child would start to show autism symptoms which they may have had right at birth. Of course this study does not address the etiology of autism or causality. Some portions not included along with the link would be

Autism’s earliest symptoms not evident in children under 6 months
Condition is characterized by a slow decline rather than an abrupt loss of skills, study says
http://www.eurekalert.org/pub_releases/2010-02/uoc–aes021210.php

“This study provides an answer to when the first behavioral signs of autism become evident,” said Sally Ozonoff, the study’s lead author, a professor of psychiatry and behavioral sciences and a researcher with the UC Davis MIND Institute. “Contrary to what we used to think, the behavioral signs of autism appear later in the first year of life for most children with autism. Most babies are born looking relatively normal in terms of their social abilities but then, through a process of gradual decline in social responsiveness, the symptoms of autism begin to emerge between 6 and 12 months of age.”

The study is notable because of the accuracy and precision of its prospective methodology, assiduously recording exact numbers of social and communicative behaviors during lab visits. Previously, researchers have constructed evidence of autism’s earliest manifestations by interviewing parents about when they believed their children’s symptoms first arose or by reviewing home movies for clues to when children begin exhibiting symptoms of autism.

The children’s development was evaluated at 6, 12, 18, 24 and 36 months of age using a series of widely implemented diagnostic tools, including the Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview-Revised (ADI-R). Examiners were not told which babies were at high- or low-risk when evaluating the participants’ development.

The researchers found that there were few discernable differences between the two groups at the outset but that after six months, 86 percent of the infants who developed autism showed declines in social communication that were outside the range for typical development. “After six months,” the study found, “the autism spectrum disorder group showed a rapid decline in eye contact, social smiling, and examiner-rated social responsiveness.” Group differences were significant by 12 months in eye contact and social smiling and all other measures by 18 months, the study found.

“Until now, research has relied on asking parents when their child reached developmental milestones. But that can be really difficult to recall, and there is a phenomenon called the “telescoping effect” where people usually say that they remember something happening more recently than when it occurred,” Ozonoff said. In addition parents frequently will turn off the video camera when their children are behaving poorly — precisely when autistic symptoms may appear.

Ozonoff said that the study does not address the etiology of autism or causality. In this study, the infants who participated were at high risk due to having strong family histories of autism, suggesting that genetics play a major role in the later autism diagnoses, despite the fact that their symptoms were not apparent at birth.”

Sandy – I’ve seen a couple of studies that suggest that certain types of neurological tests might be appropriate for very young infants… but of course such tests aren’t typically used. What’s more, I’m not completely sure how useful they’d be.

At one point, I remember a study suggesting that moms of kids at risk for autism should be taught intensive infant bonding techniques which, in theory, could “prevent” symptoms of autism. IMO, it sounds a bit unlikely – but who knows?

Lisa

Lisa~ typically, babies aren’t required do to very much but eat and poop, so recognizing signs would be quite difficult and you’d end up with parents watching every movement of their baby and a doctor telling you you’re a worry wart.
I’ve also seen the studies where video’s were looked at and while the scientists/ doctors seen the signs, the parent didn’t recognize it as a sign.

My child had no different reaction to a vaccine, never regressed farther. He’s always had a bond with me and aside from past postings, he did show restricted behavior/ choice on some things, like which side he nursed and was held, as an infant he was under reactive and at other times for lights and noises over reactive but as a parent, I blew it off as these things were all new to him. I still have that bond with my child, and I have read children with autism will bond with one parent over the other but that certainly didn’t help him when I sent him to day care to an over whelming number of children I think a child at 12 weeks old is just too young for being taught functional skills of social interaction and for some with autism, it’s life-long learning.

“I don’t expect to convince (for example) ANB, W&N, or Sandy of anything..”

I don’t expect you to either, as long as you’re quoting fringe anti-vax websites and scientists like Andrew Wakefield, whose latest monkey study has been withdrawn by Neurotoxicology. Oops.

Post # 16 was a clear example of poor internet etiquette and forcing views upon others who give their opinions and it wasn’t even directed towards the any 3 listed above (which by the way I do not appreciate being used in that manner nor should it be allowed to finger point but there it sits to reflect onto 3 commentors some ones personal opinion of them) if one doesn’t expect it, why point it out other than for the purpose of naming names. Poor internet etiquette form.
This is what the general public views, and any new parent to this site would wonder what this community is all about. It’s a no win situation, get blamed for the action taken or loose readers since the content retained never ends up being what the blogger first intended, and it’s really disappointing.
All sites sensor, I can name quite a few but some sites wont even allow differing opinions to topic let alone personal ones towards another. Sites which sensor is appreciated when it goes beyond topic to poor internet etiquette. If I continue to be ‘named’, I will find a better site which is there for the benefit of all.

To clarify, post # 16 of the previous topic to which this topic is about

I am very confused by your reference to comment # 16, Sandy.

As far as the comment that ANB referred to, I did not mean any kind of insult to you (Sandy), ANB, or W&N. I’m simply saying that I have never seen any of my comments influence your or ANB’s or W&N’s opinions, and my goal is not to change your opinions (which would not be a realistic goal), but simply to put information out there for all to see. For example, it is important to me that anti-Wakefield posts be balanced with what I believe is valid info in support of him. No reason for you to take offense at that, Sandy — certainly no offense intended.

Lancet’s Retraction of Wakefield Paper Like Gasoline on a Fire~ which is what this topic is about, and the reasoning for the actions taken (deleting the comments)~ post # 16 was a clear example of poor internet etiquette.
I don’t think it’s an issue of influence or balance (unless that is the intent onto others besides those named or why name any); it’s more an issue of internet etiquette which is part of “The problem is that asking folks to calm the tone didn’t seem to help”.

I don’t know as much as anyone on this site, but I had a question about immunization and autism. I was born in 1963, and immunized by the standard american schedule then. Now, I know that my babies immune system is adapted from me and my husband who was immunized by 1957 american standards. Breast feeding I understand transmits my immunities to my baby. Then my baby born in 1984 is immunized for things we were, and more. Could it be too much? Overkill? It seems to me we should look at populations who don’t immunize for their rate of autism. Also,we shouldn’t be sticking the same dose in every kid. Wouldn’t developing a screening, pre-immunization,help? I’m off to check autism in non-immunized populations.

Let’s not rehash all the comments in the Wakefield thread, but instead move ahead in a positive manner.

I JUST this morning deleted a really nasty post in another thread… this time by someone who is new to the site and seemed to have a desire to be mean spirited for the sake of doing it.

Thanks all,

Lisa

Maryanne, I think you are considering an important issue. While our parents suffered from many of the illnesses that today are preventable through immunization, we do have to wonder why , for example, most didn’t catch measles as infants, most didn’t catch whooping cough, chicken pox etc, until their school years. Was natural maternal immunity so much better? Did we make immunizations necessary by disrupting nature? We’ve shifted some pretty dangerous conditions, like shingles to a much younger population, mrsa has replaced the more common pneumonias in children putting it above hiv/aids as a killer. I find your question, could circulating maternal vaccine antibodies adversly affect a child getting his own vaccines, worth discussion.

Most didn’t catch these things until school years?

During the 1950s an annual average of greater than 500,000 cases of measles and nearly 500 deaths due to measles were reported in the United States. More than half the population had measles by the time they were six years old, and 90 percent had the disease by the time they were 15 years old. Prior to the vaccine, breast feeding and shared immunity didn’t seem to make a difference. Unless one tested to see if they did build immunity from the vaccine, they wouldn’t know if they had and not every one does.

As for pertussis, before vaccines, an average of 157 cases per 100,000 persons were reported in the U.S. with peaks reported every two to five years; more than 93% of reported cases occurred in children under 10 years of age. The number of deaths increased from 4 in 1996 to 17 in 2001, almost all of which were infants under one year. More than 50% of babies with reported cases of pertussis must be hospitalized.

As for chicken pox, no matter what age you do get it or the vaccine, (however getting shingles due to the vaccines is a lower risk than acquiring the virus naturally) the only way to avoid shingles is to totally avoid exposure to chicken pox. As for younger children getting shingles at an earlier age due to a vaccine, that risk is lower however it can stay dormant forever. In some people, when disease, stress, or aging weakens the immune system, shingles appears. I’d like to see evidence that younger children are getting shingles. Personally, the only people only people I know who have shingles are elderly and never had the vaccine, and my sister who never had the vaccine but does have immune issues.

source NIH, measles (pre-vaccine era) in developed countries infected children in the age group 4-7.
While you are correct, illnesses such as whooping cough and measles were more dangerous in infants,that population was less likely to be infected. We are speaking to circulating maternal antibodies.
In the case of chicken pox, the little boost we all got during the years of outbreaks increased our immunity through exposure,lacking this “boost” we are all more likely to develop shingles. In the past, a waning, aging, immune system, or a person with an immune disorder, yes, was more likely to develop shingles, that is no longer the case.

Depending on when the mother had the vaccine, and depending on if the immunity was shown to be there, and depending on if like many vaccines, the immunity wouldn’t be life-long to begin with, there’s a whole lot of ‘depending’ about circulating maternal antibodies. Children who are breast fed still get sick due to viruses just as the mother would. Also, age 4-7 doesn’t directly link the school for exposure or age of getting the illness, either. It is a common place where many children are at one time and if someone has the flu, more than likely many of the schools population will also get the flu however what about those younger siblings at home? The fact still remains those who did die due to the childhood illness were infants. More than half the population had measles by the time they were six years old in the 1950’s. Back in those days, parents didn’t always send their kids to kindergarten until age 6. Let’s not forget rubella, that effected more unborn population than any population. Would the mothers immunity protect from that?

I don’t know, Maryanne brought up the fact that moms carry vaccine antibodies, and perhaps they are interfering in some way with the early vaccines given to infants. It seems reasonable that they would. Research aimed at such an “idea” may lead to a safer vaccine schedule. For example, what about the moms who were vaccinated in those few years with killed measles, early sixties, where that vaccine seemed to be followed by atypical measles in many of the vaccinees. Could these women, passed child bearing age perhaps now, have played some part in autism to their children born in the nineties? Wouldn’t that be a good finding? We could all give a sigh of relief that the “epidemic” was over.

Like I said, you are assuming vaccines leave life-long antibodies, or that there’s antibodies built at all. There’s no way to know if the person has created those unless they are specifically tested. Even if there was antibodies still present from a vaccine given when the mother was a child, you’re then assuming the child spefically built their own antibodies off of that, and if that were the case the mothers immune system given to the child should also be life-long for childhood diseases. The mothers immune system would act like a vaccine, giving exposure to the child and it just doesn’t work that way.

Time will tell, eventually this will all be sorted out. Sadly they are finding simian virus from polio vaccine in the cancers of grandchildren of those vaccine recipients, so retroviruses do persist and have been proven deadly.

We’re talking about autism, not cancer. Interesting about those grandchildren. Most of the studies if not all have been done on those exposed to the vaccine, not the next 2 generations. Ton’s of studies have been done. IOM reported in October 2002, which concluded that the scientific evidence was insufficient to prove or disprove the theory that exposure to poliovirus vaccine contaminated with SV40 resulted in cancer in humans.

The problem with studies and conclusions, is that there may be (using the old term) hot lots.
XMRV for example and simian 40, likely would not be contaminants in vaccines used for study, and likely would not be contaminants in the bulk of vaccines. However, XMRV is a relatively common lab contaminant, and since it does seem to affect cns, as most retroviruses do, it becomes suspect, imo. Yep, I have “lotsa’” suspects. and..while measles is not exactly a retro.. measles contains an RNA genome like retroviruses..leaving it suspect,as well. Then we have adjuvants that exponentiate the power of antigens,preservatives that on their own are neurotoxic, and unexplainable synergy between metals . Would it be too much to ask that vaccines become a bit greener?

And what exactly should or could be greener in vaccines? That’s like asking for antibiotics to be greener. You can buy 409 cleaner or make your own out of citrus however that ‘greener’ is hardly the same when considering medicine. You could make your own mold and eat it I suppose, that would be considered ‘natural’ and ‘greener’ than getting an RX.

As for your simian, look up the studies. Of course they didn’t conduct any studies on current vaccines contaminants. Many studies all around the world were conducted on those vaccinated with the vaccines which had the contaminant. IOM reported in October 2002, which concluded that the scientific evidence was insufficient to prove or disprove the theory that exposure to poliovirus vaccine contaminated with SV40 resulted in cancer in humans, be it the individual who had that vaccine way back when or their grandchildren.

BarbaraJ – by “greener” do you simply mean “less likely to have a damaging impact on the human body?”

It would certainly take someone better versed in chemistry and biology than me to determine whether it is feasible to remove all the items you mention from a vaccine and still ensure that the vaccine is -

* effective
* capable of being shelved for a period of time
* capable of traveling from manufacturer to user
* safe relative to NOT including those items

One of the difficulties, IMO, is that we are talking about a chemical compound that must do a great many different things, and do them as well as possible.

If the vaccine is “green” but ineffective, there’s no point in making it. If it’s “green” but can’t be transported any distance, it’s not going to be very feasible to use it.

Yet to throw up our hands and say “better no vaccines than vaccines that are not completely safe” seems counterproductive.

The reality is that “completely safe” products don’t exist in the world. We take very significant risks every day without thinking about it; the likelihood of severe injury or death as a result of driving a child to therapies or slipping and falling in the tub is far greater than the risk of injury through vaccines. Unless, of course, one believes (contrary to any research I’ve ever seen or heard of) that “we are all vaccine injured.”

Lisa

No, I don’t suggest we put vaccines out to spoil. Yet, I do think we are a developed country, by definition, and methods such as refrigeration could conceivably cut down on bacterial growth, perhaps lessening the need for the “amount” of preservative. We know, at least it seems we do from the H1N1 vaccine provided this year in this country, that antigens can be up’d in numbers reducing the need for adjuvants, and we know ,as well, that companies, such as merck have been shut down for cleaning from time to time to reduce the contamination of their “products” . This last one is uncalled for, we need safety standards in place to reduce the possibility of contamination with murine viruses, mycoplasma, and an array of fungal and bacillus pathogens. By green I simply suggest we do the BEST for our children and expect quality to be assured across the board,and for vaccines to be consistent from one supplier to the next. There is nothing worse, than being told, “the one your child received was contaminated”, or “the one your child received had twice the thimerosal of the “other” manufacturer. When I refused my son’s (1996) dtp, my doctor called NIH and the director told her to give my son the dtap because it was shortly to be cleared for use as the first shot, and he had done so with his grandchild. When I suggested my son receive a polio shot rather than take the chance with sabin, I was given clearance ,as well. Had I known about thimerosal, I would have looked for single shot doses. The parent can’t possibly be the informed consumer,we don’t have access to the information. If the risks can be lowered with choices, there should be no choices, the safest product available should be the only one marketed. So yes, Lisa, my use of “greener” suggests what you said,“less likely to have a damaging impact on the human body?”

Daily I see information, such as this one ,http://www.drugs.com/news/lung-infection-up-wake-kids-pneumonia-vaccine-22029.html

that does suggest we are causing more harm using vaccines, we are causing a shift in virulence. There was a very old theory about “bugs”, that seems to be proven out in this century,”if we have a virus, it’s possible that a new one won’t have the “space” to invade”, we shouldn’t play God and eliminate some to make room for something worse.
We assume, as parents, that the drug companies are using some sterile culture, such as eggs, and growing vaccines under clean conditions, not true, the soup of contaminants varies from product to product, the particles , such as prions and bits of dna and worse, are there, we haven’t removed them. While autopsies are showing damage to the brain consistent with HIV/retro virus damage in autistic children, for some reason we don’t want to believe that it is very possible that our children have been injected with a retrovirus. We can’t consider pseudotypes, because we as parents don’t have that knowledge,but it can happen, the WHO investigated the possibility of this combining of measles with an avian retro, couldn’t find it, but couldn’t dismiss the possibility. We didn’t read that anywhere did we? We didn’t read that the testing couldn’t be done properly because of other processes that occur during incubation times,and while it wasn’t proven that it happens, it could not be proven that it doesn’t. Did I say, vaccines damaged most of us, if I did I stand by it.

What bugs me about these conversations, BarbaraJ, is that we’re discussing apples and then applying the information to ice cream cones.

Is it possible that vaccines can damage children? OF COURSE! In fact, we know that it sometimes happens, though IMO it happens quite infrequently.

Is it possible that drug companies have unsafe procedures, improper testing, and so forth? OF COURSE! We see that this happens all the time.

Could the FDA approve drugs that are not fully tested, or that have known or unknown harmful side effects? OF COURSE! We see this happening on a regular basis.

Does ANY of this tell us “vaccines cause autism?” OF COURSE NOT.

What we wind up doing, when we try to link all these points together is, is create a false logic that looks compelling, feels compelling, but means very little.

In a sense, we’re saying “the capitalist medical-industrial-governmental complex is likely to cut corners for profit and turn the other way. as a result, people get hurt. as a result of THAT, vaccines cause autism.”

Of course, these statements don’t follow one another logically, though they may appear to.

If your point is that we, as a human race, are meddling in biology we don’t fully understand to make a profit – and sometimes cutting corners as we do so – I’d say you’re probably right. And I’d agree that we KNOW we’ve made mistakes before and are likely to do so again.

If your point is “and therefore vaccines cause autism,” I just don’t see the connection.

Lisa

I understand that we all process information differently. When I point out the many neurotoxins in vaccines, I do so as disclosure, never to say vaccines cause autism. I avoid those sites that “know”, because more information IS needed. We as parents and future grandparents should not have to read about secret WHO meetings and discussions that go on for years suggesting some of these vaccines are a recipe for disaster. We are not treating vaccines as responsibly as we are covering vehicles, the recalls are slow in coming when they come at all, and the truth is hidden behind words such as “cleanliness/quality control”. I would tell a parent that allowing a baby to crawl on a golf course is a dangerous possibly deadly action, because I KNOW what the deadly soup of pesticides including fungicides and insecticides are. I have read most of the MSD sheets, I understand “to a degree” the LD50’s, this information is given under freedom of information, we don’t seem to have this information when making decisions with regard to vaccines. We trust that they are safe, or the safest they can be, and my thinking, which could be quite in error or could be correct, we are accepting unknown toxins and dangers. Rare? Infrequent? not acceptable terms IMO when it comes to my child.

I disagree that ‘we as parents’. You cant base yourself on all parents. That’s like saying they cant give you a ticket since you didn’t know the speed limit. Everyone should had known vaccines carried side effect risks, and the info about vaccines were always there and obtainable. Parents had access, who ever didn’t access it or read the packaging is their own doing, you simply cant put the full blame unto the makers of vaccines.

I would bet you have more germs and bacteria in your house than a vaccine makers lab does. So would a grocery store. These microscopic things are just that, and every where and as much as any try to prevent them, there is no alarm that goes off to detect these tiny things. The fact is during the recent recalls, there were recalls, they are checking for contamination and they are making it public.

As for your article (which has nothing to do with autism but overall finding any flaws with any vaccine and then so it must relate some how to autism)
“The vaccine may be getting rid of the pneumococcal bacteria that cause most pneumonia and other types of invasive pneumococcal disease. But the bacteria that are left over that the vaccine doesn’t protect against that are more likely to cause empyema may increase because they don’t have to compete against the other pneumococcal bacteria anymore.”
Last I knew, and I could be wrong, bacterial pneumonia is far worse and one of my sister’s almost died from it. This study shows bacterial pneumonias have decreased. Looks to me like another vaccine is in the making. This study also is off of a data base only. It doesn’t show which kids had the vaccine and or other health issues. The thing with this article however is you recover from pneumonia, most times unless there is other medical conditions. No where in this article mentions long term effects or deaths due to pneumonia but even without the vaccine, we all know pneumonia happens. The thing with these such articles is the power of suggestion, and then making it ‘fit’ what you want it to fit.

No one is playing God. Medical science has saved many lives as did vaccines. Maybe we should go back to horse drawn wagon’s since whoever invented that motor car didn’t imagine speeds as high as 75 MPH and all the accidents and deaths it would cause. They didn’t consider the pollution or DUI drivers, either. Science isn’t perfect and I hate to inform you but neither is the human body. No human body is exactly the same. If you’re expecting perfect, you’re never going to get that. That’s what ‘green’ means to you. You want perfection in an imperfect world and have yet to show “the one your child received was contaminated”, or “the one your child received had twice the thimerosal of the “other” manufacturer” (<– who was told that?) resulted in long term anything or autism.

Sandy, I have heard many things, and have read many things, and I KNOW I could not just dismiss anyone’s theories , not until we know more. I’ve heard, for example, that the reason for white upper middle class CA residents increased risk of autism, is that they are Republicans who lack empathy to begin with. I laughed, but, is there some science behind this too? Maybe it’s not so funny, but that’s just it, we don’t know.

One must separate theories to todays current guesses and opinions, such of that of Republicans. Ones choice of political party leads to the opinion of empathy then leads to autism, and if you do not want to dismiss that as leading to autism (which is a medical condition) you’re going to end up researching every whim that shows up on the net. It could be those in CA have Asperger’s to begin with, and as an adult decided to become a Republican but the two are not related. It would be a waste of science to study that one.

Maybe you could elaborate further on which vaccines are a recipe for disaster, and be able to show and determine for which people would be in that diaster risk? Just what were the unknown toxins and dangers?

Correct me if I’m wrong, but I believe Barbara’s point is simply that we shouldn’t dismiss possibilities out of hand.

And I think she has a point: we simply DON’T KNOW what might or might not be a cause of autism in any individual case… and at this point in history it does make sense to keep an open mind.

By the same token, though, I think we need to be careful not to suggest that “autism” means “lack of empathy” (it’s a whole lot more than that!). Or that the fact that big business is sometimes corrupt means “therefore big pharma causes autism.”

IMO, keep an open mind, but no so open that the flies get in!

Lisa

Lisa, you have a point, are we talking about individual cases or as a whole? Of course, everyone should and should have looked into their own individual cases prior to making choices however if we’re as a whole (on a forum) to consider Republicans is suggestive to the whole of CA autism rates and does not imply individual cases. That ‘theory’ really has nothing to do with an open mind, but some of those theories could throw other theories right out the window. Same with vaccines are a recipe for disaster, for some it might be but not knowing which or the circumstances surrounding those cases, it’s a blank statement generated to the whole.

Sandy – I’ve never heard anyone suggest that vaccines always cause autism, or that republicans are always autistic!

IMO, the vast majority of thoughtful people are clear that there are many types of autism and many causes (and potential causes).

Lisa

Well I’ve heard it, many times and many times right on this forum.

I’ve never heard anyone suggest that vaccines always cause autism.

Medical Hypothesis came pretty close when it published
“Autism: A Novel Form of Mercury Poisoning” in 2000.

When I point out the many neurotoxins in vaccines, I do so as disclosure, never to say vaccines cause autism.

Salt is a neurotoxin.

Y’know, I guess I must be listening to the wrong people or generally giving too much credit where it isn’t due…

If there are those who comment on this blog and believe that vaccines are the only cause of autism, I’ve somehow missed seeing those people… so, my bad.

To be honest, I’ve always felt that the people who comment on this blog, while they disagree on many things, all seem to agree on one point: that autism is a complex disorder with multiple causes, presentations and responses to treatment.

Maybe it’s my rose colored glasses, but by and large I think this community (here, on this site) is pretty well-versed and smart.

Lisa

I know people who say that vaccines sometimes cause autism, but nobody who says that “vaccines always cause autism”. I know people (myself included) who believe that vaccines are a major factor (maybe the primary factor) in the increase in autism rates that we have seen during the past 25 years, but nobody who says that ALL autism is caused by vaccines. The paper, “Autism: a Novel Form of Mercury Poisoning” certainly did not say that vaccines always cause autism. If vaccines always caused autism, we would almost all be autistic. If about one percent of kids today are autistic, and something like 80 to 95% are vaccinated, clearly vaccines do not always cause autism.

If you’ve “somehow missed seeing those people”, Lisa, so have I!

Quite interesting. Not sure how anyone could miss the blank statement ” some of these vaccines are a recipe for disaster.” which is pretty one-sided, not open-minded and when you’re on an autism blog, just what is the reader suppose to make of that? The only real disaster we’re talking about is autism. I of course have not seen a blog entry about Republican’s empathy and autism, and the only real time long threads occur is when the topic is vaccines as a cause to autism, which is where this thread originally came from; the MMR vaccine.
Maybe it’s selective reading.

Sandy – a car with bald tires in the snow is a recipe for disaster, but that doesn’t mean every car accident is caused by bald tires in the snow.

I guess I don’t see that statement as being an absolute faith statement about vaccines and autism.

There’s no doubt in my mind (nor, I’m sure, in anyone else’s) that some people are damaged by pharmaceuticals some of the time. Some people who would have survived at home die in the hospital.

That doesn’t mean the medical community is evil, that pharmaceuticals are bad things, or that a plot is going on to poison our kids! But it does mean, IMO, that (as you’ve said many times) we need to be aware, ask questions, and consider the implications of medical decisions.

Lisa

It would seem that one person’s rose colored glasses are another person’s reluctance to follow the evidence.

Bald tires would be your choice, there’s no secret meetings keeping you from seeing you have bald tires. We of course aren’t talking about bald tires or dying in a hospital, or other pharmaceuticals however you read that too.

Are you saying you’re ok with those blank statments?

What blank statements? You mean “recipe for disaster?”

Of course I’m okay with statements like that, which express an opinion based on an individual’s research and experience. They may be wrong or right, but it’s certainly their right (and yours) to speak their mind.

I’m presenting information, but I don’t have access to the smokefilled rooms, or a tap on Jenny and Jim’s phone!

In other words, I don’t KNOW what causes autism, what (if anything) cures it, who is doing what behind closed doors, or what (if any) evidence is being suppressed or fabricated.

I DO know that Wakefield’s 1998 paper and a more recent paper have been withdrawn by the publishers and that Wakefield himself stepped down from Thoughtful House.

I do NOT know whether all these events occurred strictly because of Wakefield’s unethical actions or whether there is more behind it.

I DO know that vaccines have saved countless lives. I also know that some people are damaged by vaccines. Based on the evidence I have in hand, I think it’s likely that some tiny group of children probably do develop neurological problems as a result of vaccines which could be accurately diagnosed as “autism spectrum disorder.”

I do NOT know whether evidence is being suppressed, whether it would truly make a difference in safety if the elements in vaccines were “greener,” or what various individuals’ motivations are at the NIH, CDC, etc.

In short, I don’t have the answers. And so long as people are respectful toward one another in expressing their opinions (and their opinions are not libelous, etc.), I’m find with reading them on the blog.

Lisa

Those blank statements are not personal opinions when they are not speaking about themselves only, and include the ‘we’ and ‘us’ into whatever their own evaluation is of what they decided to research and form an opinion on. It is offensive to many when blank statements are made “we as parents”, “we are not”, when it was they as A parent. That is not a personal opinion or speaking about ones self, it is a forced opinion unto the we’s and us’s.
Are you’re saying you agree with those statements?

Let me put it this way. I may agree or disagree with a “we” or “us” statement, and I’m not shy about saying whether I agree or disagree.

But as long as the statement is made in good faith, and respectfully, I’m fine with such statements being made on this site.

In other words, if someone says “we as parents want to see ABC policy passed,” I am fine with it. I might disagree, saying “THIS parent doesn’t want to see ABC passed, but instead would rather see XYZ passed.” But I see that as reasonable debate.

On the other hand, if someone says “we as parents know that Dr. X is poisoning our children and we should go out and physically attack Dr. X” I am NOT ok with it. I will immediately delete such a statement as soon as I see it, and I’ll let the poster know that such comments are not acceptable.

Similarly, I am fine with someone saying “I and many other parents disagree with you, and would make different decisions for our children.”

But I am not ok with someone saying to another commenter “Your ignorant comments show that you are clearly unable to make intelligent decisions for your child.”

I hope this makes sense.

Lisa

Based on the evidence I have in hand, I think it’s likely that some tiny group of children probably do develop neurological problems as a result of vaccines which could be accurately diagnosed as “autism spectrum disorder.”

Remind me again – what evidence would that be? Because I’ve been under the impression for years that there is no credible evidence linking vaccines to an autism spectrum disorder. Dr. Andrew Zimmerman, Hannah Poling’s physician, believes the same thing, according to his testimony in vaccine court. And please don’t bring up Bailey Banks and Hannah Poling. We’ve been down that street before, and it doesn’t lead anywhere. A court finding is not the same as a scientfic finding – the US Supreme Court ruled 110 years ago that the tomato is a vegetable, for crying out loud!

ANB, we know that vaccines occasionally cause neurological damage. Neurological damage can manifest in many ways, with “autism like symptoms” being one of those ways.

Since “autism like symptoms” appearing in a child under age 3 is identical to “autism,” it seems reasonable to assume that some of those children who are neurologically damaged by vaccines become autistic.

No, I am not stating this is “scientific fact.” No, I do not have a list of studies to trade with you. No, I am not taking half my day to debate this. I am simply making what I believe is a logical and reasonable assumption.

Lisa

If you’re not being scientific when you refer to “the evidence I have at hand”, then how are you forming your “logical and reasonable assumption”? Do you have unscientific evidence? If so, then your logical chain of assumptions is faulty from step one. It’s like saying “Penguins have wings, birds need wings to fly, therefore it’s possible that a very small subset of penguins can fly.”

C’mon Lisa, it shouldn’t take half your day to find one example in peer reviewed scientific literature where vaccines cause autism. I’m not talking about the studies where Boyd Haley dumped a sack full of mercury on a nerve cell and cracked the petri dish. Just one scientifically confirmed case of vaccine-induced autism, and I’ll stop. It should take you ten minutes, max. After all, the evidence is “at hand”, right?

It sounds to me like you’re still perpetuating the debunked myth that vaccines cause autism. Yes, I know it’s impossible to prove that vaccines don’t cause autism, in the same way we can’t prove reindeer don’t fly. But what exactly is the “evidence at hand” that it has ever happened? Not court cases. Scientific evidence.

Do you know why the vaccine-autism myth isn’t going away anytime soon? It’s because people like you are keeping it alive. Even People Magazine knows better.

Sandy, I think you mean “blanket statement” rather than “blank statement”.

ANB, are you suggesting that vaccines NEVER cause neurological disorders that manifest in autism-like symptoms? Can you show me a piece of research that supports that perspective?

I can list dozens of pubmed papers that point to neurological damage as a result of various different vaccines (http://www.ncbi.nlm.nih.gov/pubmed/7906066, etc.). You can then dissect each study, saying that the neuro damage is not officially “autism.” I can then say that the symptoms are “autismlike,” which, according to Susan Levy of CHOP, is synonyous with autism.

And we can continue this all day. But I’m not sure what the point is.

I am not saying “vaccines are the root cause of an autism epidemic.” I am saying that vaccines can, on rare occasion, cause neurological symptoms that look an awful lot like autism – and if it looks like autism and the patient is under three, then it IS autism.

Lisa

By the way – if you read the fine print on almost any pharmaceutical product, of course you find that there are rare instances of severe reactions. Even an antibiotic, given to the wrong person, can cause death.

The same goes for foods, of course: peanuts can kill you if you’re severely allergic.

Vaccines are no different from anything else: sometimes they cause damage. When that damage looks like autism, it is autism.

All of these events are rare in the extreme. But they do occur.

Lisa

…are you suggesting that vaccines NEVER cause neurological disorders that manifest in autism-like symptoms? Can you show me a piece of research that supports that perspective?

You know better than this. No, I cannot prove a negative. Can you?

The AAP releases a study next week that says 1 in 5 parents “continue to believe that some vaccines cause autism in healthy children, despite scientific research to the contrary.” How do you suppose 20% of parents got that idea? Do you think mainstream media outlets might be part of the problem?

All I’m saying is be more careful about what you write. I know it’s “just a blog”, but until you carry a black box warning to ignore everything you write, you might want to put a little more thought into your 500,000 page views a month.

Of course you can’t prove a negative.

But you know as well as I do that saying “never” is just plain silly.

You’d prefer that I simply relay the studies coming out of the CDC and NIH, and say “there’s no evidence, based on these studies, that vaccines are responsible for a significant rise in autism.” I have relayed that information.

But because I DO think a good deal about what I write, I think it’s right to ALSO note that these studies have limits… that vaccines are not risk free (any more than any pharmaceutical can be called risk free)… and that brain damage can, very rarely, occur. For goodness sakes, it’s in the literature, on the CDC site, and the basis for the vaccine court – obviously it’s true.

You’re right in thinking that people may take that admission and run away with the wrong idea. But that shouldn’t be a reason for bending reality.

Lisa

So, if someone is talking about their very own child, anyone has a right to debate that? You don’t view that as an attack?

If some one is including the all or we and us into their opinion, as long as they are being nice, you see nothing wrong with that and don’t see the harm inflicted to others? No one really has the right to tell anyone what they should be doing, which is what this is. Or that someone tries to enter words to my opinion?

A blank statement is what I wrote and exactly what I meant and exactly what I am talking about.

“I am saying that vaccines can, on rare occasion, cause neurological symptoms that look an awful lot like autism –”
This goes right back to my question(s) about blank statements. Why should the all, we and us be inflicted and have expectations to others? I of course do not see Lisa doing this, it’s many other’s that do and it puts an over bearing tone to those who wish to give opinions when they know it’ll be turned into an all we and us issue. It seems to me that if these things are being done, sweetly or otherwise, it’s acceptable.

I’m not sure if this is what you’re asking, Sandy, but I will not be editing or deleting comments simply because they include the words “we” or “us.”

By the same token you (or anyone else) are most certainly welcome to make it clear that you do or do not feel included in that “we” or “us.”

BTW, when people say “my child had this experience,” or “we tried that and it helped my child,” I think it’s probably just fine to have folks chiming in with questions like “were you using other therapies at the same time?” or “how did you measure progress?”

That type of interaction, I think, helps people to think outside the box and reflect on what changes they’ve really seen, etc.

Telling someone they’re a bad parent for choosing the “wrong” therapy, though, is not ok.

Lisa~ without understanding what I am asking, not sure why you’d then give an answer however your answer did in turn partly address the question(s).

Although you do have good topics and I have enjoyed many of them for a long time, I comment to many of them aside from vaccine/ autism issues, the comments end up taking away from your intent and it is those comments that I have myself been subjected to, as well as others. So really what you’re saying is although I don’t treat others in that manner, I can as long as I’m nice about it or hope that you miss the comment(s) all together. Where as some sites totally block opposing opinions, this blogs welcomes them with open arms however it clear over the last few months the tone of this blog has changed.

On a final note, and appropriately place, I am still wondering why, considering this topic, that no one is addressing the recent developments of Andrew Wakefield? In the autism community, one would think it would rank top blog topic and be credible news to the autism community.

But because I DO think a good deal about what I write..and that brain damage can, very rarely, occur.

Why are you talking about brain damage? I understand that you could fill the Grand Canyon with the great deal of thought that you put into that sentence, so I can only assume there is something that I am not seeing. Is autism the same as brain damage? Or did I wander into About.com:BrainDamage by mistake? Or is that just you being unscientific again?

And why did you write this:

But you know as well as I do that saying “never” is just plain silly.

I must have left my silly hat at the circus, because I don’t recall using the N word. So why bring it up? Isn’t it enough to just say there is no instance in the medical literature of vaccines causing autism, that the myth was largely started by irresponsible media reports, going back to the DTP scare of the 70s, and move on? Why speculate about something as important as immunizations for deadly diseases? I suppose if you had a point, it would be OK. But I still don’t see what your point is, other than to wink in the direction of the vaccine rejectionists, to let them know you appreciate their page views. I hope I’m wrong.

ANB and Sandy, I’ve spent a lot of today going back and forth with you guys, trying to explain why I do what I do on this site… but you both know me very well, and I think we’ve gone over the ground often enough.

If you don’t like the approach I take, there are many other blogs out there that you can connect with. If you do enjoy commenting on this blog, I invite you to do so.

Lisa

I really do not get it. You said ” became so personal and abusive that I issued a request for more civil conversation. Unfortunately, commenters weren’t willing to tone down the tenor of their remarks, and I was forced to delete all the comments on the blog.” I am trying to figure out, and rightfully should be aware, what those guidelines are. Agreeing with comment #1 from MJ on this topic, prior topic post 74 was not the last comment and post 69 where you directed attention directly at 2, as long as you’re nice about it, it’ll fly? Now I happen to know why you chose to delete the whole topic although in my opinion, post #16 warranted attention as much as you thought the 2 you warned needed attention, although we’re talking about opinions and that is what the 2 were offering. Post 16 was a direct attack of some one’s opinion, and the topic went on to 76 posts. Maybe you need to look back at those posts.
My question again is, every site has boundaries, where is this sites? If it has no boundaries, I’ll keep that in if I decide to continue at this site which once was my favorite of all.

I thought I was very, very clear. I will write a list of rules.

1. no personal attacks on others commenting on the blog
2. no personal attacks on people in the autism community
3. unless a celebrity sets himself up for comment (eg, Denis Leary or Michael Savage), no persona rants
against celebrities

Here’s what IS ok:

1. expressing opinions
2. disagreeing civilly with one another

OK?

Honestly, I was NOT and AM not interested in being a blog policeman. I don’t want to have to spend my days saying “she said a mean thing,” or “he stepped over the line.”

I assume that most people are adults. In the case of the one blog, the conversation got out of hand several times. So I deleted it.

But this is not school, I am not the principal, and I assume that most people will behave like civil adults. As you are doing now, and as almost every does almost all the time.

Lisa

How about conveying demonstrably false or misleading information? OK? Not OK? Are improbable conspiracy theories acceptable as substitutes for real evidence? I’m OK with not allowing personal attacks, but what about baseless attacks on institutions such as the AAP, CDC, NIH, etc? Can someone say, for instance, that the AAP will sacrifice childrens’ health if it helps land more pharma cash?

Can I still refer to Jenny McCarthy as a soft-porn comedienne?

ANB~ as long as it’s your personal opinion, there’s no reason why you shouldn’t be allowed to express it. We shouldn’t be limited to Denis Leary or Michael Savage, unless a celebrity sets himself up for comment is a personal opinion as well. That’s the same as saying “only if that person sets themselve up, you’re then allowed to attack them back”. We’d also need to define personal attacks or plain opinions on like say Wakefield, who is part of that autism community. If someone expressed their opinion, and another then said that was hog wash, just what would that be considered? Being civilly polite?

Hmmm… hogwash MAY be okay… so long as it isn’t actually bulls*&t.

Honestly, ANB and Sandy, 99% of the time, you say exactly what’s on your mind, and you’re read by quite a few people. Others are extended the same opportunity.

That means ANB gets to say that Jenny is an ex soft-porn star (because she is). And others get to say that they think Wakefield has been framed, because that’s their opinion.

I will protect ANB’s right to say his piece, but I also protect the rights of those with whom he disagrees.

Unless he flames them personally, in which case I’ll delete or edit, and/or get in touch and ask to PLEASE cool it.

If that’s not okay with you, then feel free to not participate on this blog – you’re under no obligation either way.

Lisa

So someone gives an opinion, and a reply is given hog wash directly to that person, it is ok but bulls*&t isn’t? Why, because it’s not swearing? What’s the point of giving an opinion?

OK. No need to go further, you’ve answered all my questions.

Sandy that was intended as a joke, but you’re right. There is no point in going further. If you want a site where someone is babysitting every word and editing every remark, this is not the right site for you.

Good luck in finding the site that suits your needs.

Lisa

Well, you never addressed the use of jokes haha. This site never had attacks before, and it’s too bad you don’t have better expectations being in the autism community and a blog providing info. Babysitting every word and editing every remark has yet never been requested of you, you are in fact the one who decided to delete the topic.

I never said I was going any where, I might just follow your rules.

Is it too soon to call Wakefield a fraud? Because I can’t think of a better description.

It’s not too soon to call Wakefield unemployed from Thoughtful House (it seems they thoughtfully reconsidered after the UK findings) he has yet to release his newest adventure.

Dr. Wakefield is not a fraud. And he was not let go by Thoughtful House. He left of his own accord.

Hi Everyone,
One of the things I truly value about this blog is it is a place where people of opposing views can civilly discuss their points of view. And I am deeply grateful to Lisa for that.
Most autism blogs cater to one point of view only, which can be very insular.
I think that the knowledge gained by multiple viewpoints is sometimes necessary to put a picture together.

ANB, you made a comment aboutt brain damage and autism. There are twin studies that show that hypoxia at birth ( which of course causes brain damage ) is a high risk factor for autism. A quick search of the net defines Tuberous Sclerosis,also linked with autism as “a rare genetic hereditary disorder characterized by benign tumor like nodules of the brain or retina, skin lesions, seizures/and or mental retardation” Brain tumors causing seizures and mental retardation would also be considered a form of brain damage…
Maternal infection of rubella causes encepalopathy which is linked to autism.

Completely unrelated, but am feeling very frustrated with the education system at the moment.. perhaps education challenges is one issue many of us have in common to varying degrees?
Tryng to figure out the best solution is not easy.

By the way in terms of vaccine safety, was reading about a new way of potentially giving vaccines, by skin scratch, which may be safer and less liable to have side effects.

It is experimental, though of course that was how the first vaccine ( cow pox to prevent small pox) was given.

Thanks, Hera and Twyla, for chiming in!

Indeed, brain injury is among the known causes of autism (though of course one can be brain injured but not autistic!).

I was very surprised to learn that – contrary to what seems like common sense – ANY time the symptoms of autism are present before age 3, REGARDLESS of their cause, autism is an appropriate diagnosis. That apparently means that a child can be autistic if they are brain injured or oxygen deprived at birth, born with FAS, etc. This is from a Big Wig at Children’s Hospital in Phila – and vetted by the About.com medical reviewers who’s a Big Wig at Mt. Sinai!

Re education, I too would think this would be a big topic on this site. I’ve written many articles on the subject, though, including in-depth articles on public, private and home options; preschool; etc. – and they’re rarely read.

At this point in history, MOST people seem to be very focused on symptoms, causes and therapies, and NOT with living on the spectrum. Perhaps the assumption is that, if autism can be cured, one needn’t worry about living with it??

Lisa

If, according to the Big Wig, if the signs of autism symptom’s arise prior to the age of 3 it’s then autism, then that would explain those high autism rates to explanable causes and vaccines would rank lowest to causes, wouldn’t it? This would be regardless of Autism Society and many otherorgs stating there is no known cause(s) for autism.

Well now Twyla, as much as I can appreciate your differing opinion, did Wakefield himself tell you he left on his own accord? My ex tells me this all the time as well. Either way, quite suspicious chain of events so soon after the UK findings.

Sandy, re your comment #90, YES!!!! If FAS, brain injury, and all sorts of other conditions may also be appropriately diagnosed as autism, it does explain a lot.

It floored me, because it seemed so counter to common understanding of what autism is, where it comes from, etc. But it does support the simple idea that autism is not a “disease” but is rather a set of symptoms… which, if you read the diagnostic criteria, really does make sense. Levy says about 20% of autism cases come from known causes.

I interviewed this lady after our online conversation (yours and mine) on this very subject. I wanted to be sure I wasn’t off base.

She runs the autism center at Children’s Hospital of Philadelphia, and is major player in the mainstream autism world. And the reviewer here at About.com was very enthusiastic about both her credentials and her point of view. Here’s the link to the article I wrote, citing her: http://autism.about.com/od/causesofautism/f/realautism.htm.

Lisa

So autism is a catch-all. Why have any research when we already know the causes for probably more than half the diagnosed rates? This of course would explain why some want subgroups; you’d have a sub group of those with brain injury, a sub group of those with oxygen deprived at birth, another of FAS and then of course the final sub group of those very few who don’t fall into any of those previous sub groups. You’re correct, autism isn’t a disease, it’s a number of known things lumped together to make a single ’sort of’ diagnosis of symptom’s which may or may not be neurological at all. If you read the diagnostic criteria as you’re reading it, a zillion things are lumped into it. So I don’t get it, if this is acceptable, then why isn’t lumping asperger’s into it acceptable as well.

I too am very grateful for Lisa for putting up this blog and allowing for comments on it too. I think she has been doing a very credible job, especially considering how determined certain people here are in their disagreements over certain issues.

This morning I went through my usual Google route to find this blog and for the first time in a long time it did not come right up at the top of the list and, for a moment, I was afraid that perhaps this recent onslaught of tensions had caused Lisa to give up on it. I was relieved when I was able to eventually locate it.

Please, Lisa, continue to keep this blog up despite everything that has gone on lately. Although I only comment rarely and in fits and spurts, I do really enjoy reading it frequently and have gleaned much helpful information from it.

ANB, Regardless of whether or not you disagree with her comments or her actions in deleting the one thread, Lisa certainly shouldn’t have to post a warning to her readers to “ignore everything she says.” It stands to reason that every person should be careful about what they say in public. As a reader, I appreciate living in an area of the world where I do have the freedom to choose for myself what media I want to ignore and what I want to pay attention to and I’d like to maintain that right, please.

The 20% of holdouts on the vaccine issue you mentioned do have a right to their opinion regardless of what opinion you have of them or what you might believe caused them to form that opinion. True, a good argument may convince some of them to change their minds, but demanding self-censorship of the other sides of the issue probably will not. I feel it’s only fair to let you know that after reading that comment, I felt myself becoming more inclined to ignore your side of the argument, not Lisa’s.

Still, I do think I am one person who has not completely made up her mind on the vaccine issue and, as such, I am still interested in hearing out arguments on both sides whether they are completely scientific or not. I do promise, however, that I will consider the quality of the science involved prior to coming to my own opinion. However, it would be helpful to me in understanding the issues if the tones of the comments were dialed down somewhat. Thank you.

Sandy, maybe you misunderstood me. I did not say “here is my opinion about the definition of autism spectrum disorders.” I said “here is what a major expert in the field of autism diagnostics says, as supported by another pediatric expert.” On this site, which is medically reviewed, I am going with that definition for the articles I write (until and unless that definition changes, which seems likely).

Again, according to Levy only about 20% of causes are known – not 50%.

IMO, the reason to break autism spectrum disorders into discrete groups is to better understand those groups. There does not appear to be a single “autism,” nor does there appear to be just one (or even several) causes for the set of symptoms we call autism spectrum disorders.

Lisa

FYI: If Lisa chose not to run this blog, it wouldn’t disappear, it would be handed over to some one else as it was handed over to Lisa. She would resign and some one else would be appointed. Prior to 2006, Adelle Tilton ran this area (I’ve been on this site for a long time) neither owns this site. When this site first started, all it was, was a bunch of links to media stories.

Anyone watch Mystery Diagnosis? A baby had an upward fixed gaze, also had some serious crying fits which seemed to be pain-caused. Took the child to the doctor and they diagnosed autism with sensory issues to account for those bouts of crying. Turns out, it isn’t autism. Even though at age 3 the child is developmentally delayed, had no speech and would fit the criteria of autism, this child had the diagnosis of only the tech term for the upward gaze; no autism diagnosis. Depends on the docotr you see as to the accurate diagnosis you end up with.

Quite right: this site is part of About.com, and a new person would come on board to run the blog and site. IMO, that person would almost certainly be much more mainstream in their opinions and commentary, since About.com Health has started hiring medical professionals for most of their health blogs (and I’m a mom/advocate/writer).

Lisa

Interesting User agreement of this site. I wonder how many people actually read it before they started using this site.

And no Lisa, I was aware it was not your opinion, but the opinion of those Big Wigs you mentioned however many claim and are deemed an expert (Wakefield was one) but that doesn’t mean it’s agreeable. ‘Definitions’ is one thing, fitting every one with what ever disorder into that definition is another.

Thank you for the FYI Sandy. I was expressing a fear as it actually happened. Admittedly, it does appear to have been an unfounded one and I’m thankful for that.

Lisa, thank you for your commitment to allowing debate. We are, after all, in the United States of America, and one of the principals upon which this country was founded was the principal of open discussion.

In some countries, a dictatorial government decides what people are allowed to say. Those in power believe they know what can safely be discussed, and believe that certain ideas threaten the public good. In contrast, our founding fathers believed that topics could and should be openly debated and then people could make up their own minds.

Sometimes belief in vaccines becomes like a religious belief in a country with one religion, where nobody should be allowed to raise questions about vaccine safety. Apparently ANB and Sandy believe that they know the Truth about vaccines, that they are Right, and that others are Wrong and should therefore be censored.

I believe that in time it will be generally accepted that vaccines can cause autism and other health issues, and that during the past 25 years or so our vaccine program has been overly influenced by pharma company profits and by our government and medical establishment’s reluctance to admit to problems and mistakes, which have been swept under the rug instead of investigated. In the meantime, conversation about these issues should not be forbidden.

Again, I am not anti-vaccine. I believe that vaccines play an important role in fighting communicable diseases. But like any medical treatment (such as drugs, surgery) there are risks which must be understood and monitored and weighed in relation to the risks of the medical condition.

Lisa, you said, “Re education, I too would think this would be a big topic on this site. I’ve written many articles on the subject, though, including in-depth articles on public, private and home options; preschool; etc. – and they’re rarely read.”

Even though vaccines is the topic that generates the most comments on your blog (as far as I have noticed, anyway), please don’t give up on writing about the other very important topics such as education!

Twyla, very well put.
Lisa, I truly value what you do here,and the fact that this site is open to various opinions.I think you provide a wonderful service to the autism community.
I sometimes wonder of the reason we don’t comment so much on education is because those topics are so close to home?
And because there just aren’t any easy answers all the time.
One topic I’d be deeply interested in is any “out of the box” ways of teaching basic things such as math and writing. Does anyone have any really good resources or programs they have used? Or even ideas to get a particular concept across?
As I think I’ve mentioned before, my youngest has disabilities but does not have an autism diagnosis, though he has the same brain structure as the gentleman portrayed in the Rainman movie,and is missing the corpus callosum.
Sandy, I sometimes think that is part of the confusion; certain things, FAS, brain damage at birth etc can result in an autism diagnosis, but most of these things do not always result in an autism diagnosis. And as Lisa pointed out, 80 % of people diagnosed with autism don’t have a known cause yet.

At the moment, it seems that it seems that Aspergers is differentiated because there are “no clinically significant delays in early language”, and “no clinically significant delays in cognitive development or in age appropriate self help skills” The DSM IV TR goes on to comment ” The child may appear to the parents to be precocious (eg with a rich or adult vocabulary).” With autism, the DSM IV TR states “in most cases there is an associated diagnosis of Mental Retardation which can range from mild to profound”
I suspect that in real life the boundaries between the two get more blurred depending on who is doing the diagnosing, and of course it looks now like the next edition may change the definitions completely…

Hera,

This is just a suggestion and not part of the debate thread, OK? I’m not sure if this is really an out-of-box suggestion regarding math either… Have you tried finger math? It did help get around some (not all) of the initial stumbling blocks my son had with math. If you’re not sure what it is, there have been some textbooks published exclusively on the technique. Way back when, I just borrowed one from the library and learned the technique myself first and then taught it to my son at home.

Apparently ANB and Sandy believe that they know the Truth about vaccines, that they are Right, and that others are Wrong and should therefore be censored.

Apparent to you, maybe. I would never say I know the truth about the vaccines. But i do feel comfortably presenting credible evidence, and I’m pretty good at spotting specious and dishonest arguments that try to link vaccines to autism.

As always, when I see real evidence that truly challenges my beliefs, then I will change my point of view. And if you have any real evidence, now would be a good time to present it.

Mary,
Thank you so much! Finger math is something I had not heard of before, and looks like it might be great way to teach even division and multiplication. Despite being fairly bright, my son has a great deal of difficulty with memorizing stuff,and I wasn’t sure if times tables would ever be possible at all. He is finally getting two digit addition and subtraction now;Yes!!( though still uses his fingers to count forward and back, so this might really work for him.)
Off to learn more about a new topic..
Can very much relate to the getting out a book from the library and learning a new topic; in the early days, when speech looked like it might not be going to happen our family ended up learning basic sign language.(”Signing Time” tapes are a great resource if anyone is going that route).
Amusing though; we discovered that as we were focusing on teaching sign language to a toddler, our sign language conversational ability had some pretty heavy blind spots which became obvious the first time we tried to sign with a deaf adult..
Important conversational gambits such as “Do you want milk??” don’t really cut it for adult conversation..We ended up using pen and paper to have a nice adult conversation by writing everything down.
Again, I so much appreciate the finger math suggestion, it could make a great deal of difference to his ability to do math; thank you.

Re finger math – do be careful that he’s actually understanding what he’s doing with calculation. We had Tom in TouchMath for years, and he did very well; problem was that he never truly grasped basic number concepts (what, exactly, IS five? why count up to and by tens? what is place value?).

We found Tom could do a drill sheet of, say, double digit multiplication just fine on Monday, and on Tuesday have no clue what to do.

Last year, after going through many math tutors, we found a man who is a dyscalculia expert (like dyslexia, but with numbers) to work with him. And it is like night and day. The kid actually understands math, and LOVES it!

Lisa

I agree completely Lisa. It was the same with my son. Like most things, finger math is not a “be all, end all” solution and needs to be filled in with other approaches to round out the child’s understanding as much as possible. It did help my son get over being completely stuck about some of the basic math concepts though.

Thank you both very much. Concepts versus what to do is a tricky one; he gets that you can’t take away 7 candies if you only have 3, but don’t think he really gets why you have to carry a one,and sometimes gets a bit confused as to whether he should be counting more or less for adding versus subtracting.
Which is all much better than it used to be, so the improvement is still great…
Can very much relate to the sometimes he can do it, sometimes he can’t Lisa; that is pretty much the way it is with a lot of things for him; good days are great, bad days it can be like it is completely foreign to him. He seems to do better with overlearning.
Don’t think there are any dyscalculia experts anywhere near here; but it does sound like that approach might also be really useful. Do you have any book resources or techniques that were used that you might be able to point me towards?
Thank you both again very much for all the info.

Hera – I may actually winding up WRITING the book along with this tutor, whose name is Mahesh Sharma. It’s a surprisingly straightforward method of teaching; it uses a lot of cuisinaire rods.

Email me offline (autism.guide@about.com) and I can give you a lot of the details; bottom line, you’re building pattern recognition, a real understanding of base ten, a real understanding of place value, then moving to doubling.

Lisa

Lisa