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Autism Vox

The Vaccine Witch Hunt

by Kristina Chew, PhD on October 12th, 2007

“A childhood free of serious illness is now taken for granted.”

So writes Paul Howard in an op-ed in today’ Washington Post that is entitled On Vaccines, Immune to Reason. Howard is Senior Fellow at the Manhattan Institute Center for Medical Progress, is Editor of the daily blog Medical Progress Today. It is this assumption—belief—-that Howards suggests is one reason that, despite more and more scientific evidence to the contrary, many still think that there is a link between vaccines and autism. Howard concludes:

….critics are effectively demanding that scientists prove that thimerosal does not cause illness — an impossible standard.

The very success of vaccines has become their downfall. As Dr. [Paul] Offit writes in Vaccinated, “When [vaccines] work, absolutely nothing happens. Parents go on with their lives, not once thinking that their child was saved.”

It is time to rescue vaccines from the witch hunts that go on when science fails to provide easy answers for complex diseases like autism. First, policymakers should end the opt-out option for VICP. If society is going to mandate vaccines for school children and encourage companies to invest in their development, companies must be shielded from the volatile passions of the jury box.

Second, and perhaps most importantly, policymakers must invest more in vaccine education, so that parents understand the benefits of vaccinations (along with their real, but very rare risks).

The benefits and the “real, but very rare risks”: Howard does not deny that vaccines can harm as well as help. But the question is, has too much harm been done to the public understanding and trust in vaccines, so that the word “vaccine” has only negative associations?

POSTED IN: Vaccines

60 opinions for The Vaccine Witch Hunt

  • Chuck
    Oct 12, 2007 at 12:11 pm

    The risks are very real and not nearly as rare as Howard would like to make them out to be.

  • Joseph
    Oct 12, 2007 at 1:19 pm

    The risks are extremely rare, whereas the risks of not vaccinating are substantial. Quackwatch has a good summary.

    http://www.quackwatch.com/03HealthPromotion/immu/immu04.html

  • Chuck
    Oct 12, 2007 at 1:33 pm

    The information at quackwatch is incomplete and over a decade old and uses CDC data, which is also incomplete.

  • Kristina Chew, PhD
    Oct 12, 2007 at 2:45 pm

    On a similar note, “the risks of chelation therapy, properly done, are few” but still real and acknowledged.

  • Chuck
    Oct 12, 2007 at 2:51 pm

    Yes, but chelation is voluntary, whereas vaccination, supported by government funding and mandated by government, is not.

  • Patrick
    Oct 12, 2007 at 2:52 pm

    Do you have a more complete or updated location we could look at for better ideas about how rare or common these risks are?

  • julie
    Oct 12, 2007 at 3:05 pm

    As far as I was aware parents do have the right to opt out of vaccines as long as there is a resonable reason for that decision. I would assume that most doctors do not find unsubstantiated paranoia to be a valid reason. My children did not recieve the pertussus vaccine until it was no longer live and they were older because we have a family history of people having reactions to that vaccine. Some mild some much more severe. I have never had a doctor give me hard time about this and they all have agreed that this was a wise decision. I get angry with the parents who do not want to vaccinate but can not say why other that they are unsafe and they make children sick. Childrens lives are saved by vaccines every day and the more people do not use them the more at risk all our children are.

  • Kristina Chew, PhD
    Oct 12, 2007 at 4:40 pm

    Patrick, do you mean about chelation—Dr. Kenneth Bock mentions about the risks of chelation in his recent book, mentioned in this post.

  • Ms. Clark
    Oct 12, 2007 at 4:42 pm

    It’s easy to bash vaccines, all people have to do is make something up. It’s also easy to find associations between vaccination and any sort of bad thing.

    Every year people who are vaccinated die in car crashes the same day they are vaccinated, they don’t have to be driving, they just die in a car crash. Not too many but some must. Because car crashes are not that rare and getting vaccinated is common.

    Seizures are not that rare. If you vaccinate everyone then some will have seizures following a vaccine (an hour, a day, a week, a month later). In order to figure out if it’s the vaccine that causes the seizure you have to get the data on a large number of people getting the vaccine and subtract the number who would have have had seizures anyway in a day, week, month.

    People have tried to blame everything on vaccines, even hair loss. “I got a flu (hepatis A or tetanus…) vaccine and soon after my hair started falling out.”

    Well, what about all the other things the person was exposed to at that time? What about the fact that the person’s mother and sister both had their hair fall out suddenly (not following a vaccine)?

    It’s way too easy to blame vaccines, partly because the vaccine phobes and frankly paranoid psychotic people (of the sort that fear vaccines, not all paranoid psychotic people are focused on vaccines, but some are) have devoted their lives to undermining confidence in vaccines thinking that they are actually promoting health in doing so.

    This dissemination of lies and half-truths about vaccines is sad to me personally, and openly threatening to public health, but there it is. Distrust is rampant and the antivaxers are playing on it as you can see being done in your comment section here.

  • Patrick
    Oct 12, 2007 at 5:24 pm

    Sorry for the lack of direction in my first comment, but Thanks for the link to the Bock post, I will review it again.

    My first question was intended for Chuck, as he was the one mentioning the ancient and incomplete risk data, but offered no better source to consult.

  • Chuck
    Oct 12, 2007 at 5:32 pm

    I fully agree with Ms. Clark, we should stop people from making things up about vaccines.

  • With Autism or Autistic?
    Oct 12, 2007 at 6:11 pm

    […] of that child. Some who think that their child “became” autistic due to something like a vaccine or something in vaccines suggest that autism is something separate and distinct. Therefore, using a phrase such as […]

  • sick o' the antivaxers
    Oct 12, 2007 at 7:03 pm

    Chuck,

    We can’t stop people from making stuff up about vaccines. No need for paranoia about that.

    Now, if some of those who spread falsehoods about vaccines would take their meds, they’d be less likely to listen to the voices in their heads telling them that the CDC is evil and using vaccines to implant tracking devices… destroy the health of chidlren so they can’t grow up and reproduce… turn black people into white people… not sure if that would help JB Handley and Jenny McCarthy, but they might find that the right meds might be worth a try. Meditation on some science textbooks might help, too.

  • Chuck
    Oct 12, 2007 at 9:56 pm

    Sick O,

    Are speaking from experience about hearing those voices, or are you unable to accept other peoples differences?

  • HCN
    Oct 12, 2007 at 10:33 pm

    Patrick wrote “Do you have a more complete or updated location we could look at for better ideas about how rare or common these risks are?”

    Yes.

    A simiple “Compare the Risks” chart:
    http://www.metrokc.gov/health/immunization/compare.htm

    For absolutely all of the information with the journal papers in the references, an explanation about the vaccine, the consequences of the disease… that would take a whole book.

    Fortunately it is accessible online:
    http://www.cdc.gov/vaccines/pubs/pinkbook/pink-chapters.htm

  • Chuck
    Oct 13, 2007 at 11:13 am

    Neither of the sources HCN gave provided the effectiveness of the stated vaccines in preventing the illness. The second link to the CDC did provided some random case studies, but they cannot be extrapolated to the general public nor can they be confirmed from study to study or case by case.

  • amy
    Oct 13, 2007 at 8:19 pm

    Well. I don’t think vax education is either warranted or likely to be effective, because most people just don’t care that much. Vax propaganda, on the other hand, can be extremely effective. So I fully support more vax propaganda, as well as the practice of sending out visiting nurses. I would bet that much of the no-vax problem has to do with parents, esp. single parents, not having the time, insurance, or money to schlep around to the doctors’ office when the child isn’t sick. And of course doctors don’t want to give vaccines when the child is sick.

    I’m not convinced that the paranoiacs have really got that much influence. They don’t seem to stop people from giving the kids non-organic milk, McD’s, or foods made from GMOs. (That GMO thing still burns me up. I understand the problem from the farming side, but as far as the “eating this will make you sick” side goes, I’ve yet to hear an advocate adequately answer the question, “How does my gut know the difference?” That’s because it doesn’t. Nevermind, let’s all run from the (wrong) GMO hobgoblin.)

    Anyway. Vax propaganda.

  • Kristina Chew, PhD
    Oct 13, 2007 at 10:50 pm

    But then, what isn’t propaganda and misinformation—-DAN! and other providers of biomedical treatments could be critiqued on the same grounds.

  • amy
    Oct 14, 2007 at 12:15 am

    Kristina, I’m not criticizing, just naming the rhetoric. Public education campaigns aren’t about teaching; they’re propaganda. They have to be. Very few people are going to sit down and wade through the studies. Even fewer are qualified to do it. Which works better, 4000 pages on costs of litter, or “Give a Hoot — Don’t Pollute”? Journal studies on neurochemical changes due to prolonged drug abuse, or “This is your brain. This is your brain on drugs”?

    I particularly dig the ’90s anti-smoking propaganda with the woman smoking through her trach. Now that’s effective. Beats the black lung slice any day.

    A public vax campaign would have to be about as blunt and simple as that. Should be cake. Those diseases are not nice at all. TV and radio: “I didn’t vax my kids, and they got _____, and my son [awful story]. Don’t put it off. Get your kids vaccinated.” Follow up with mailings that use b/w shot from ad, tell where to get free/reduced-cost vax, include short faq addressing concerns, give phone numbers for appointments.

  • Kristina Chew, PhD
    Oct 14, 2007 at 12:33 am

    A read of the numerous websites about biomedical treatments reveals a great deal of rhetoric which disguises itself as truth and science. Critical reading skills are necesary to unmask both this and what you mention.

  • amy
    Oct 14, 2007 at 2:13 am

    “Critical reading skills are necesary to unmask both this and what you mention.”

    Sure. They’re in short supply, though. And besides, I think you’re right, I think the vax story is a modern changeling story. I don’t believe reason will go far in overpowering it. The people who’d be susceptible to that will already have had their kids vaccinated, by & large.

    It’s not like people were happy about the idea of live vaccine, either.

  • Justthisguy
    Oct 14, 2007 at 2:55 am

    I got my measles immunity the old-fashioned way, by getting sick with the measles. I got my asymmetrical myopia the old-fashioned way, by catching scarlet fever. It was treatable by antibiotics, which I didn’t get.

    Dammit, I did so want to be a Naval Aviator!

  • Kristina Chew, PhD
    Oct 14, 2007 at 12:34 pm

    I think if we’re going to cast such a critical eye on what the CDC etc. has to say about vaccines, equal critical analysis needs to be cast on biomedical practitioners. The Internet seems quite rife with websites promoting their treatments, and the same tough questions needs to be asked of them.

    I got my myopia the truly old-fashioned way—genes.

  • amy
    Oct 14, 2007 at 2:11 pm

    Kristina, I’m assuming you’re not talking about propaganda in that last post. But I think what you’re neglecting is that these battles are fought with propganda backed by substance, not with substance. The MMR-autism link was substantively demolished long ago. But it doesn’t matter unless you have the propaganda in hand. You can tear apart the “cure” research, but again, without effective propaganda, you haven’t got anywhere.

    As far as a biomedical approach goes…this is a separate issue, I think. So long as there are people who view their children’s autism as a tragedy — and how is it not their right to do so? — you’ll have cure seekers. I expect you’re right in saying that eventually this will lead to development of fetal genetic tests and abortions based on those tests. I think women should have that choice, but I guess my question for you at this point is “are you looking just to put down bad ‘cure’ promotions, or are you looking to stop ‘cure’ research and — as a side effect — cut off development of fetal genetic tests?”

  • Chuck
    Oct 14, 2007 at 3:17 pm

    Some people are not as myopia due to their experiences and environment. So what is more important, nature or nurture?

  • Kristina Chew, PhD
    Oct 14, 2007 at 3:41 pm

    amy, have you mentioned that about the “MMR-autism link” being “substantially demolished long ago” to the writers on the RescuePost? To the supporters of Andrew Wakefield? The discourse of autism is fascinating to critique on all fronts—the rhetoric of cure, the ethics of (prenatal) genetic testing, the age-old “nature-nurture” (physis/techne to the ancient Greeks question. Autism seems to be a topic that enables these kinds of questions to be raised and reconsidered.

  • Cliff
    Oct 14, 2007 at 3:53 pm

    We do need effective propaganda (though others might call it PR, propaganda really is pretty much right) to get anything out. You’d wish that wasn’t so, but it’s true.

    On the biomed, though, I do think there is a moral culpability to calling something internal (I’ll argue any day it’s internal) an innate tragedy. It quickly falls into “you are a tragedy, a mistake, unworthy, to be terminated” very, very fast (I can say that because it has).

    It is a good question, though, regarding genetic fetal tests. I am wary about giving people that power because, like genetic modification, it will fall quickly into abortion until you get that “perfect kid”, which will, in time, create a completely homogeneous population, or some genetic mistake (like inbreeding) will occur before then. So I’m not sure exactly where I fall on that issue, as much as I like choice. I usually advocate for abortion when you aren’t ready for a kid in some way, but specifying thereafter is dangerous.

    Cliff

  • amy
    Oct 14, 2007 at 4:55 pm

    Cliff, if you don’t allow the choice, you end up with people having autistic children they’re not prepared to raise and don’t want to spend their lives raising and caring for, regardless of the hypothetical help available. You cannot make people want to do this. Nor can you make them take good care of autistic children. You can’t even make people take good care of easy non-autistic children.

    It needs to be a choice.

    I can tell you that if genetic testing were not available for several diseases and internal conditions, including Down’s, and if abortion weren’t available, I wouldn’t have risked having a child. If any of the tests had come back positive I’d have had an abortion. Why? Because I like my life. I’m happy to be able to live this way, and I have things to do besides caring for children. I’m willing to give years to a child, and I’m aware that surprises and accidents happen. But I wouldn’t have a child knowing the odds were high that I’d be turning the rest of my life over to the child. I’d be even less inclined to do it if I already had children. One reason I’m not having another is that I got lucky the first time, and I’m a pat-on-17 kind of gal. No need to roll those dice again.

    I’m not all that worried about a completely homogenous population. I think it’s unlikely to happen, but even if it did, in the fairly homogenous populations that exist, so long as you control for serious genetic problems, I don’t see social problems related to homogeneity.

    I also think there’s a very important distinction to be made between “you are a tragedy” and “autism is a tragedy”. Unless, of course, you are nothing but autistic, and defined by nothing but autism. I also think it’s hella presumptuous to tell an old lady that she’s wrong to feel, privately, that her grandson’s autism is a tragedy not just for the son but for her own child. She can see a long story ahead of “what might reasonably have been expected”, and there is this instead. If you want to propagandize for Holland, that’s fine, but don’t get mad when someone tells you that’s all very well, but honestly, she wants to exchange her tickets.

  • amy
    Oct 14, 2007 at 4:58 pm

    Before someone makes an unwarranted leap of logic: No, I am not advocating that people use this sense of tragedy to do cruel cure-seeking things to their autistic kids. I am saying that they may legitimately feel that the condition, whatever its cause, is tragic.

  • Cliff
    Oct 14, 2007 at 5:21 pm

    It’s true that autistics are more than most people are expecting to raise, but I would suggest that when you have children, you’re taking a chance with what child you get, at least in traditional terms, and you are then expected to be dedicated to that individual, in realistic way. That’s usually considered the terms of parenting. And that includes some things like Down’s Syndrome. If you like your life, maintain that, certainly, but do you really maintain your life with any kid, at least assuming you don’t abandon him/her?
    I do think that homogeneity has been a historical issue, and I don’t feel the need to bring up such incidents in detail. But there is a danger in assuming even the survival of the human race when you have duplicates.
    I don’t think that distinction is needed. “Compassion is a tragedy” targets those with compassionate characteristics, assumes they are inferior, and morally validates eliminating compassionate people. The quality therein is enough to distinguish the person from everyone else. And, as a society, we have said it is unacceptable to go out and damn people even in cases where it is external and not in and of itself a threat, notably race. It would be something even more extreme to damn for something internal that is not a threat. Autism itself is not a threat, and it is part of the person. So to damn autism is to damn autistics, too, not just autism. This is, of course, based on the understanding of autism is internal.
    I’ll agree, though, on something. I am presuming general moral values and codes of conduct we use in society. You can say that any behavior of hatred and dislike should be reserved for other people as desired, regardless of type and basis. That’s fine, so long as you then come around to accepting racism, sexism, and a slew of other things people don’t generally accept. And then you have to accept that if the feelings are fine, the actions therein are too.

    Cliff

  • Cliff
    Oct 14, 2007 at 5:28 pm

    Err… dropped an important word. “I am presuming some general moral values and codes of conduct we use in society”.

  • amy
    Oct 14, 2007 at 6:52 pm

    “And then you have to accept that if the feelings are fine, the actions therein are too.”

    No, that’s wrong. We don’t prosecute people for thoughts or feelings. We prosecute for actions. I accept that sexism, racism, all these other isms exist in the world, because they do, and they are genuine. Lust and rapaciousness also exist in the world and are genuine. But we do not accept rape.

    “I would suggest that when you have children, you’re taking a chance with what child you get, at least in traditional terms, and you are then expected to be dedicated to that individual, in realistic way. That’s usually considered the terms of parenting. And that includes some things like Down’s Syndrome.”

    No. That’s why there are tests for Downs, so that you can make that choice. While there may be accidents and unexpected problems for any child, we work with odds. The odds are that most children will grow up without major incident, leave the nest, and require no or minimal help from you. Your tour of duty is expected to be about 22 years. If your karyotype comes up funny, you can expect it to be considerably longer.

    You can also suggest that people be devoted, but in fact the bar is pretty damn low. What you see on this board, and the sort of thing I do, comes across as a sort of heroism. It still surprises me, but apparently most parents do not show this level of commitment. I think this is an instance where confusing “ought” with “is” is likely to be quite cruel to the child. For a long time.

    “If you like your life, maintain that, certainly, but do you really maintain your life with any kid, at least assuming you don’t abandon him/her?”

    Well, it surprises me, but my life’s actually pretty similar to what it was before I had a child. The last year’s made a world of difference that way, the year between 3 and 4. The main difference is that I need to make more money, I maintain a bigger house, and I haven’t the same freedom to travel. The money part’s been motivation to find higher-wage work, so my actual work hours are about the same. She’s not quite ready to travel with me, and we have custody issues, so we’ll mostly stay put for a few more years. But eventually she’ll be ready to go, and I’ll take her around with me.

    I also did a fair amount of prep to make sure I’d be able to keep on this way even in the event of divorce. I’ve watched friends struggle as single mothers, and that was plenty for me.

    My life’s substantially different from the life of the parent with a child who has severe autism, esp. the single parent of a severely autistic child, and it’ll probably diverge further as my child grows up and becomes more independent. This is, of course, something else we haven’t talked about here; the idea that if the parents do not want to raise a high-needs child, but you don’t allow testing or abortion, and the child is autistic, there may well be a single unwilling parent raising an autistic child. And that’s a one cruel story.

  • Cliff
    Oct 14, 2007 at 7:21 pm

    Ok, I did phrase that wrong. In terms of punitive punishment, motive isn’t in and itself in a crime. But there are feelings and ideas that do cause people to shun someone and reject them from society.
    I do, though, think there is a degree of dedication that is, or at least should be, with parents, and though most of the time the dedication level is sufficient, not beyond, that usually people expect at least that. And unless the child can be defined as the definite villain, the parent is usually at least socially reprimanded.
    Now, here’s a catch in the phrasing. The traditional value of parenting, as defined, does not usually account for, or really allow for, testing such as that for Down’s Syndrome. It’s not that parenting the kid you receive is generally accepted, but that is what is expected of the parent. However, the contradiction is ignored in cases of a “death” condition like Down’s.
    I’ll admit your report is contrary to many of those I have heard from parents. But it sounds like, in the least, it is affecting you in a more practical manner, which is something to say in and of itself.
    And, again, I’m not generally for selecting kids for problems related to homogeneous populations that arise from that. Parenting is a big decision, one to be considered carefully, for that reason. I have no issue aborting if you aren’t ready to parent.

  • Justthisguy
    Oct 14, 2007 at 11:41 pm

    I’m happy to have been vaccinated against smallpox, and mostly happy to have been vaccinated against poliomyelitis. I remember when the Salk vaccine came out in the early fifties; one of my earliest memories is of getting stuck with that particular needle. Later, when I was in elementary school, we were given the oral Sabin vaccine, and I remember thinking that vaccines give you lifetime immunity, why should I have to do this again?

    I found out later about the monkey viruses in some doses of some polio vaccines. I do hope, both that I did quit smoking soon enough so as not to require a lung transplant, and that the polio vaccines I got didn’t have that bad monkey virus in them, which would come back to haunt me if my immune system were suppressed by drugs given to me as a consequence of said transplant

  • Kristina Chew, PhD
    Oct 14, 2007 at 11:54 pm

    Speaking as the parent of a child who some would say is “severe,” “lf,” “many defects” (another commenter wrote words to that effect in the past few weeks)—-life is good and I don’t know if others would want my life (one lovely boy, a lovely husband and friend, full-time job—these can be construed as brags; so be it), but it, again, is good.

    My hang-up with vaccines is that I see the word and think “cow,” Latin vacca.

    I know that parents may choose not to have a child with a disability because of assumptions of how hard life might be, for the child and then. But I think we forget that so much can happy to any of us: You could have the “perfect child” and see them become addicted to drugs or alcohol and damage themselves. It’s hard to predict.

    My sense is that genetic testing and personalized medicine for more and more conditions is on the horizon and I do think it’s best to be informed, and certainly about how neither Down Syndrome nor autism ought to be see as a “death” condition (to borrow your phrase, Cliff).

  • Cliff
    Oct 15, 2007 at 12:08 am

    I have been, indeed, referring to not just “disorders”, as you will, but a random shot as far as general behavior and existence is concerned.

    It’s odd how that perfect child thing works; my sister was a perfect child, but she turned out to have significant ADHD and brain damage largely because her mother (underage) had anesthetic during pregnancy. I was, obviously, not normal, but then I had that burden for some years after I had smoothed rough edges after ABA, but that changed with more verbalization and understanding. Then my brother got all that burden and then he turned out ADD and had educational issues not really of his own fault (by this I mean that, despite his placement in a Gifted and Talented program, he ended up with a very elderly and ill teacher who, well, couldn’t teach). So, in the end, we were all something of a burden, and all a lot of work (we all still are, actually).

    Cliff

  • amy
    Oct 15, 2007 at 12:35 am

    Sorry in advance about the length.

    Cliff, I’m curious what you mean when you say my report is contrary to others you’ve heard.

    :) I just spent half an hour with a post-tantrum child, who earnestly explained that her brain doesn’t want to be mean, but her body makes mean words that are strong inside her, and the feelings make the words come out of her mouth, and her brain can’t stop them. (Sigh) And who doesn’t have that problem occasionally? Yes, in these respects my life is different than it was before.

    I’m gratified that halfway through her explanations, she recognized that the explanations were not going to win her back the privilege of a bedtime story tonight, accepted that and kept telling me what was up.

    Cliff, most parents apparently don’t bother sitting and talking with a 4-year-old this way. (Or a 16-year-old.) Or working out 76-page IEPs with the teachers. I didn’t get it for about the first two years of dealing with social workers and therapists wrt my ex’s problems. I thought they were putting on the awe about how good our parenting was. And maybe some of it really was put on. But eventually I started hearing the stories about what they usually see. No, those parents don’t usually get reprimanded. People mind their own business. Barring the awful CPS stories like ex-spouses making malicious reports, you have to do genuinely heinous things to your children, repeatedly, before the state will intercede.

    There is a considerable difference between “not ready to parent” and “fine with parenting, but not wanting to do it daily for the next 40 or 50 years.” I don’t see anything wrong with going in looking at the odds rather than with eyes tight shut. You may as well shrug about things like retirement planning, too. After all, we’re all going to get old (if we’re lucky), and who knows what might happen? Banks fail, wars and crime happen, you never know. That’s true. But it’s also true that the odds are very good, if you plan and save and don’t just say “OK” when your employer says, “Here, pal, I’ll take care of that for you,” that you’ll have some decent money saved when it comes time for retirement.

    This, by the way, is another reason I really wasn’t up for knowingly having a child with serious long-term needs. I’d like to retire someday and have money saved for taking care of myself when I’m old or sick. (Don’t talk to me about Social Security. We’re on Year 3 here of trying to get SSD benefits for my ex.) One reasonably mid-level-maintenance kid with in-state tuition is about what I can pay for, probably. I wouldn’t knowingly let myself in for more.

    The Down’s decision was actually not an easy one for me, particularly because the week before my amnio, a story came out in the Times Sunday Magazine by a severely disabled woman, a lawyer, who spoke passionately for the quality of life possible for the disabled. She was quite impressive. I had about a week to make a decision after that. But the child is not the only consideration. I looked at my husband, already sick, though I didn’t yet know how sick; I looked at myself, and I said hey, I’ve only got so much juice. That’s more work than _I_ want to do. And thank God my daughter was as spectacularly healthy and ordinary as she was. I spent the year after her birth taking care of her ordinary physical needs, trying to shore up and find care for my increasingly ill husband, and working after he lost his job. I was a wreck. I remember taking myself to the mall for my birthday when she was a year old — that was my big present — and seeing myself in the mirror, and saying, Holy crap, I look like the no-English cleaning lady who goes home and gets beat up every night. So sad and beaten down and exhausted. A high-needs child on top of that? I’d have been in the loony bin myself. So yes, I feel fine about that decision.

    Your key issue really seems to be the genetic diversity one, and it’s a little perplexing to me. Assuming — and this is a big assumption — that the issue is something like carriers of some collection of genes, rather than a random mutation, the genes for autism will persist in the population. It’s no different from, say, CF that way. There’s no shortage of CF carriers. The only difference would be that the actual incidence of (assuming a relatively fine-grained test, another big assumption) severe autism would be manifested much less often in the population. I fail to see how this is a bad thing, and I don’t say that in an “autism/autistics are bad” sense. I say that in the sense that if we really do have a marked increase in the incidence of autism now, that means that we got along swimmingly with a lower incidence for a long time. There’s no reason to assume that we wouldn’t get along that well societally again.

    Also, if you look at the testing that’s done for other genetic conditions, you’ll find that it doesn’t result in the condition disappearing from the population. Some people don’t want the tests and prefer to take whatever they’ve got. Some people take the tests just to get used to whatever’s coming. Some people go in meaning to abort with a positive, and change their minds.

    I do, btw, understand the “maintain the culture of ______” sentiment. However, I think forcing people to participate in it by withholding either abortion or info that might lead to abortion is wrong.

  • Kristina Chew, PhD
    Oct 15, 2007 at 12:41 am

    Can’t say that I was perfect on all fronts as a child myself!

  • Kristina Chew, PhD
    Oct 15, 2007 at 12:45 am

    My friend Brett noted (and he may correct me if I am wrong) that it is too bad that every child does not have the careful attention paid to their education as the child with the IEP does.

  • Cliff
    Oct 15, 2007 at 1:11 am

    Oh, no, I like length.

    Usually, I have heard parents, like Kristina, who say that parenting has been a uniquely altering and life-changing experience, so the sentiment that your life hasn’t changed is a little contrary to that, but an interesting difference.

    Notice, though, the very existence of the social workers stories, which say something in and of themselves by existence in terms of expectation. And, in the end, it’s why you hear a lot of “Mommy Dearest” stories. It may not be an immediate effect, but in experience I have seen a lot of shunning and a raised eyebrow when talking about bad parenting, as well as a lot of pleading for forgiveness.

    And I do see that point regarding the odds of a “disabled” person, but I still think that if you are going to parent, it might be worthwhile to accept consequences thereof, including the small chance of a much more “severe” issue. To be honest, you take this chance regardless of disability; drug addicts can be both a heart breaker and a serious drain, for example. I recognize that people looking forward to accepting the potential consequences is an ideal, at best. I may never be a parent for this reason, or at least I will have to be in a circumstance where I think I can deal with the consequence.

    Now, onto the genetics. I am assuming a test that can really detect autism, and not just one that can do a rough test. Now, from that, anyone will know of an autistic kid and can act to remove them. Now, when presented with what at least now comes across as an “inferior” being, the majority, say 75%, will opt to eliminate. That might be fine, perhaps. But that’s not going to stay, because total personality and decision making isn’t passed generation to generation, and another 75% will be knocked off each time until… nothing to speak of, really. The genes of the carriers will be diluted, because they will have kids who will have fewer and fewer of those genes, and in a few generations the entire condition will cease to exist.

    But I also suspect something else; that the genetics for autism are complex enough that around the time we can check for autism we might well be able to see the entire phenotype presented. And, in these areas, parents will again select for these traits by even the crude means of abortion. With that, every “negative” trait is likely to go to the eventual genetic wayside. Admittedly, populations already genetically select by mating (not quite abortion, but similar in regards). This usually is baffled by genetic mutation, though. However, genetic testing will preempt that. And when a population stagnates…

    Now, I see the argument of “some will keep”. In generational terms, though, they don’t, and the next generation will dispose at the same rate the first did (roughly), and eventually there is a full elimination. In fact, I will go far enough to say that Down’s Syndrome will not exist all that much longer, though I won’t put a date of any sorts on it.

    Cliff

  • Cliff
    Oct 15, 2007 at 1:13 am

    I share that sentiment, Kristina.

    Cliff

  • amy
    Oct 15, 2007 at 4:18 am

    Oh, I see what you mean, Cliff. No, of course being a parent has been uniquely altering and life-changing. But I’m essentially the same person with a new aspect. How I spend my days and do my work are much the same, too. And for me, that’s the important thing. Now that wasn’t true while she was a baby and toddler, or when I was involved in my ex’s care. This year, my life’s just about back to normal. Next year I’ll have to get on the school district’s sadistic schedule (8:20 am? This is not a time for civilized people to be abroad), but on the whole my time’s my own, and life is pretty good. We have an excellent, way relaxed daycare, I telecommute freelance, got good gyms. I got to run a road race last weekend and will go to a conference next month. If I really wanted to see more movies, there’s no shortage of sitters.

    But I remember very well what it was like taking care of someone who couldn’t be left alone for long, where there was always that taut band of fear hiding somewhere in the reprieve — the next emergency, the next surprise (I’m speaking of my ex, not my daughter). I’m not entirely free of that now, but again, it’s got more to do with my ex than with my daughter. I know, for instance, that he’s not doing well now — I can hear and see it. I only see him for a few minutes a day, but I’m ready for a phone call from him in tears, asking me to pick up our daughter; or some angry threatening sally about the divorce; or something erratic in the proceedings. Something will come. But I’m spared most of the lead-in. In a few days I’ll ask him what drugs he’s on now, and for how long, and see if I have to begin doing the driving again. For me, all this is time-limited, and whatever is going on with him will wane eventually. I have about 12-14 years on the clock.

    I’m not sure what you mean about the “Mommy Dearest” stories. The social workers try pretty hard not to have expectations of clients’ parenting, but ours was so fairyland-beyond-the-norm that they finally explained what “normal” meant to them. The amount of “kids are resilient, kids bounce back” that’s necessary in those stories really makes me wince. Apparently people are usually pretty horrible in divorce, too. As horrible as our divorce has been, it hasn’t involved meanness and using the kids, and I guess that’s standard. I don’t even want to go into what qualifies as adequate parenting in the court’s view. But the point is that an awful lot of parents just aren’t up to it. I think sparing some parents an autistic kid, and vice versa, is probably a wise idea. I cannot imagine, for instance, how my ex would manage with an autistic child.

    Your genetic accounting doesn’t make much sense, there, Cliff. It assumes autistic kids are going to have children, and apparently they mostly don’t. So they knock themselves out right there. The carrier population will persist in non-autistic offspring, just as carriers for CF, Tay Sachs, color-blindness, and other recessive traits persist.

    Nobody would abort a carrier fetus. A large minority of the Ashkenazi Jewish population are Tay Sachs carriers. That’s why so many of us get tested before marrying other Jews. But very few people would hesitate to abort a fetus that actually had Tay Sachs.

    You have the wrong idea for Downs, too. Downs comes from an error in cell division, not assortment. Inheritance isn’t going to matter there. So long as you have old mothers, you’ll have Downs.

    What you’re saying about accepting consequences, Cliff — of course a parent has to accept consequences once the child’s born. But — and for some reason, there’s a large part of the population that seems allergic to these arguments — there’s much you can do to stack the odds. Genetic testing, good prenatal care, seat belts, bike helmets, vaccination, health insurance and prompt medical attention, swimming lessons, safe neighborhoods, curfews, the Thousand Eyes of Neighborhood Parents, getting to know children’s friends’ parents, connection to community, avoidance of tractors, all those things increase the odds that your child will be born without serious problems and grow up without them, too. There are always surprises. But I’ll take some risk of a surprise over a guarantee. Most children do not become addicts, TBI patients, etc. Plenty continue to be a tremendous pain in the ass well into adulthood, but it’s not really the same thing.

    I think also you’re jumping to conclusions with the “inferior” talk. I’m sure there are some parents who would regard a Downs or autistic child as inferior. But I am sure there are many more who would just regard them as too much work, worry, and expense, and regretfully say no on that basis.

    Finally, yes, we are all burdens. But there are burdens and burdens. I see what the woman down the street lives with, and I see what I live with. It’s night and day, and I don’t think there’s reason to blur the distinction. I won’t go on in that vein, though.

  • Julie
    Oct 15, 2007 at 8:45 am

    The odds are that most children will grow up without major incident, leave the nest, and require no or minimal help from you. Your tour of duty is expected to be about 22 years.

    I am not sure I agree with this. We have three children a 10 year old a 7 year old and a 5 year old only our 7 year old daughter has autism. The bys are not just fine but extremely weel adjusted. We have found that at different times our children require different things. We are fortunate and she has done remarkably well with her treatment but as far as medical bills her older brother has her beat. He was born with spinal menengitis and spent two weeks in the hospital hooked up to everything our insurance at the time was not very good and we ended up with lots of bills. I have lots of experience working with people who have gone through rehab as well as been born with a disability and there are lots of things that can happen even with a child who is born perfectly healthy. I do not care for the use of the word perfect since no one is. My children all of them I am sure are going to be more of a commitment than just 22 years. ( I hope anyway) My children have changed my life and do cost money all things that I am grateful for. I think a person who does not want to be a parent should not and commend anyone who is able to say this is enough or I am not cut out for this and sicks by their decision even if there is pressure to have a child. I just think that the testing does not tell you what you are in for there are wide spectrums involved in these developmental disorders even downs syndrom and there are no guarantees that your child will not be in some horrible accident and end up needing care that is more extensive and costly that any developmental problem. When you have a child you sign up for the unknown and I like to see that as part of the joy each days brings something new and exciting, yes work but a labor of love.

  • amy
    Oct 15, 2007 at 2:39 pm

    Julie,

    You are right. But again, as others have done here (and as people do routinely because we don’t teach math well), you are confusing possibilities with probabilities. “Could happen” with “odds are”.

    It is true, you never know what will happen. Many children will have a bout of serious childhood illness or a hospital stay. However. Most children do not end up in their parents’ care as adults. Although many live at home after college, if the parents threw them out, the vast majority would fly. Most children will grow up, get jobs, have children. Odds are they’ll manage the bulk of getting there on their own. While they will continue to need and love you, you won’t see them every day. You won’t take care of them every day. On an ordinary day, you won’t make therapy appointments for them, coordinate their care and aides, help them get through their work, make sure they’re taking care of basic hygiene and that others are treating them well. You’ll have another life, a freer life, unless you choose to take on other responsibilities. When they ask you for help, the request will probably be pretty circumscribed. Most parents don’t have reason to investigate special-needs trusts for their children.

    And that’s despite the reality that everyone has problems and adult children come back sometimes looking for help and money. Nearly every adult I’ve known has had a rough stretch, or many rough stretches, but we get through largely on our own. (Sure, I’ve been physically disabled, had a seriously ill spouse, and am now a single mother, but there’s no reason for me to go live with my parents, or for them to help me through the day.) After a certain point, we expect the flow of help will reverse, and that adults will help take care of, or arrange care for, their aging parents (and frequently they do).

    Note that nowhere in here is the word “guarantee”. But it is a reasonable expectation. The odds are that this is how it will go.

    If you have an amnio that tells you, “Your child is very likely to be seriously autistic”, or “Your child has Trisomy ____”, you cannot expect any of those things. What you can reasonably expect is that you will be involved fairly intensively in their daily care for the rest of your life, and you will have to set up the best thing you can manage for after you’re gone. It’s a very different picture.

    Anyway, I think I’ve hammered that in enough. One of these days I’ll find a link to a stats page that teaches in some simple way the difference between possibility (anything could happen) and probability (this will likely happen) and how useful probabilities are.

  • Julie
    Oct 15, 2007 at 5:01 pm

    I do understand the difference between possibility and probability. What I am saying is that telling someone that it is proboble that their child could have autism or downs syndrome is vague because that could mean having a child that is able to move out after college and be self sufficient or a child who demands an enormous amount of care I am just not sure that the probability that your child will need life long care from a developmental disability that you find out about before they are born is much greater than having something that can not be forseen happen. We hear a lot more about the previous one because it is considered more acceptable by society to turn your back on a child that has a “problem” before they are born than one who is born and then experiences a tradgedy.

  • Cliff
    Oct 15, 2007 at 5:29 pm

    I understand the distinction between possibility and probability, which is why I rather specifically state accepting possibilities rather than probabilities, though you might see I define possibilities a little lose, as below.
    Anyway, about the prior post. Again, notice that the social workers tell those stories. And “kids bounce back” is a defense mechanism, truth be told, to many of the circumstances. I have familiarity with those in the family court, and many will say that many of the people they deal with are the worst of humanity, and that though the bar is low, it is still not a truly acceptable one.
    Now, there’s something I do want to point out. I am not inherently a pro-life, anti-abortion person. I do tend to fall under the following, however; if you aren’t ready to have a kid (any kid), abort the kid. If you are ready to have a kid, but (for whatever reason) you can’t deal with the result, adoption is a very good thing.
    Now, that may seem a little contradicting to accepting consequences, but really it’s not quite. I do think that people (for genetic reasons mainly) should have the kid they are going to have, and that the parent has an obligation to support the kid in one way or another. That may well include handing the kid over to a parent willing to take care of them, if odds turn out they can’t. Really, then, what you’ll see is that the issue I have isn’t with abortion, but with human selection of phenotypes.
    Now, onto the genetic argument, something I don’t think I explained well (as usual, because I’m terrible at explaining my own views). I am not assuming, in one way or another, the autistic kid passing traits. I am assuming, though, the general genetic principle that the kids of a carrier, when a the genetics a carrier is mixed with a non-carrier, the genetics of the carrier in regards to the condition are not as many. Then the process happens ad infinitum.
    You are partially right about Down’s, come to think, because it is both age and familial (I don’t remember the exact term for the familiar aspect, though I remember it had a name derived from a typical first name. I remember that because, like first seeing Californium, I had to laugh).
    And I have no issue protecting the kid (albeit to a reasonable extent). Again, the issue is selection.
    I understand what you are saying. Interesting, though, how perspective works in this regard, to be honest.
    Cliff

  • Cliff
    Oct 15, 2007 at 5:30 pm

    Err… sorry for the bad typing.

    Cliff

  • amy
    Oct 15, 2007 at 5:55 pm

    Julie, most kids with Down’s do not go to college. Recent stories about those who do note that they’re in “just about everyone gets in” classes, and the point is not really academic achievement so much as it is social experience. While it is possible that a Down’s child will go to college, graduate, move out, get a job and be able to take care of him- or herself, etc., it is not likely. The average IQ range is 40-70. Even supportive sites talk about how adults with Down’s “may be able to live semi-independently”. The rates of certain health problems are very high, including Alzheimer’s (25%+) after age 40. The bottom line is that if you have a child with Down’s, you will likely be heavily involved in that child’s day-to-day care and life until you die. If you think that’s fine, great. But plenty of people — reasonably — look at that future and say, “No, I don’t want the likelihood of that.”

    With autism, if you couldn’t quantify the risk of disability, yes, that would leave it very cloudy. But you could still use probabilities. Of those diagnosed, what proportion are disabled to the extent of requiring care and assistance as adults? OK, there’s your rough guide. If you want to roll the dice, fine. If not, you can have the abortion.

    “I am just not sure that the probability that your child will need life long care from a developmental disability that you find out about before they are born is much greater than having something that can not be forseen happen.”

    This is easy to figure out. What percentage of formerly normal adults have accident-related disabilities that have landed them in their parents’ daily care or a group home? Now: What percentage of adults with [genetic disability affecting cognition and social skills] are in their parents’ daily care or live in a group home?

    The numbers will vary with condition, but I betcha the percentage from the genetic-disability group is considerably higher.

  • Julie
    Oct 15, 2007 at 7:55 pm

    What percentage of formerly normal adults have accident-related disabilities that have landed them in their parents’ daily care or a group home? Now: What percentage of adults with [genetic disability affecting cognition and social skills] are in their parents’ daily care or live in a group home?

    I agree if you only look at formerly normal adults but include formerly normal children in the equation and I believe that the gap would close. There are always new ways of teaching especially when you are talking about Autism and the chances that your child will be able to learn and become a productive part of society is something that you can not know just because of a test that shows a predisposition to autism. I am not convinced that the number of children who are born with a predisposition for autism have a higher number of adults who grow up to still need their parents constant care more than the percentage of children born with out a condition that have something happen to them and then need care. I would be interested in seeing any information that is out there on this since I think that most look at only the negative when they hear autism downs syndrome and other childhood disabilities. I have found first hand the many positives that come fro it. Learning that I am stronger than I thought. I have learned more patience and compation. I am a less judgmental person than I once was and my daughter although has her moments is one of the most loving souls that I know. She does not show it in the same way but she does get her point across in her own way and that is beautiful. I do not believe in making people have children that they do not want. I am pro choice. I would be concerned that parents would start to have abortions because of a risk of having problem. Many of our family memebers have the same traits as our daughter just not as severe and have never had a diagnosis and did go to college and are self sufficient. The risk involved with autism is not always clear and even if the child has many issues when they are young many are learning and improving as they get older.

  • amy
    Oct 16, 2007 at 12:57 am

    Julie writes: “I am not convinced that the number of children who are born with a predisposition for autism have a higher number of adults who grow up to still need their parents constant care more than the percentage of children born with out a condition that have something happen to them and then need care.”

    Julie. You’re steadfastly misreading.

    First, I’m not talking about “a predisposition for autism”, whatever that might mean. I posited a genetic test that could determine with some fair accuracy that a child would be autistic to the point of serious disability.

    Second, you can’t seriously be suggesting that non-genetically-disabled children require lifelong care at the same incidence that Down’s or autistic children do. Few “normal” kids have terrible accidents that leave them needing lifelong care.

    Think of all the cognitively more-or-less normal kids you went to school with. How many of them had terrible accidents and ended up having to be taken care of through their adult lives? Can you name any? Can you name five? I’m sure you can name some who had serious problems in their lives. But five who never achieved independence? I can name two. Out of a couple-three hundred. Both were schizophrenic, and both are semi-independent, I suppose. That’s an incidence of about 1%. Now that seems to me low, given what I’ve seen of families over the last 20 years. I’d guess that closer to 5% of “normal” children require care through adulthood and really would not fly on their own if the parents let go. So one in 20.

    That’d be a cause for wild celebration in the Down’s community, one in 20 needing care through adulthood.

    Now I’m not saying bad things don’t happen. Classmates of mine have died. Of the rest, some have had terrible cancers, bouts of severe depression and uncontrolled bipolar disorder, financial and career disasters, addictions, family problems. But that’s not the same thing as needing their parents to hold their lives together, keep them safe and solvent, protect them through adulthood.

    “I would be concerned that parents would start to have abortions because of a risk of having problem.”

    That would be precisely the point of the test, and why I think it’s a good thing. Let people decide what odds they’re willing to take. Yes, certainly there are new therapies, there are new hopes. But until it’s clear that a diagnosis of autism is essentially benign — that the child is probably going to be like any other kid when it comes to independence, work, etc. — you cannot get around the fact that this is an unusual, lifelong burden that some parents will not want to pick up.

    Again, if you want to quantify it — which is what probability is about — you can put it this way: “Mrs. X, your amnio says your child will very likely be autistic. Now what does that mean? Well, as of now, of the children born with autism, about [30% — or whatever the real number is] will probably require intensive services while young and some sort of home or institutional care throughout their lives, and another Y% will live somewhat independently. The rest will be pretty much normal. To put that in context, maybe 1-5% of children without a condition like autism will require lifelong help.

    “So this result does not guarantee that your child will be severely autistic. But it says that you’ve got about a 30% chance of having a child who’ll need intensive lifelong help, and about a [30+Y]% chance of your child’s having some measure of disability. On the up side, there are always new therapies being developed, so something may come along that would make the child’s life much easier, and yours along with it. There is also a substantial chance that your child will seem more or less normal, maybe even very bright and successful. Here’s a handout on autism, and here are some names of various groups and communities of autism parents, and they can give you some idea of the realities involved in having autistic children.”

    I don’t know how you could ask for any more useful info than that, beyond refining accuracy. You’re not going to get any guarantees. Someone like me could look at that and say, 30+% risk of lifelong care, too high, let’s schedule. [Again, that’s a made-up number, I don’t know what the real one might be.] Someone like you or Cliff could say, I can live with that; let’s love whatever comes.

    Making decisions based on best estimates of risk, it’s what we do every day.

  • Kristina Chew, PhD
    Oct 16, 2007 at 1:08 am

    I’ll just inject that I know more than two adults who have mostly lived their lives in a very dependent fashion. (Anecdotal information, of course.) I don’t have any more numbers than amy posits. Perhaps it is the notion of “independence” itself that can be reconsidered here, and reevaluated in the light of disability.

    “There are always new ways of teaching”: Another lesson learned from raising Charlie, for sure, along with learning to humble myself to others’ opinions.

  • Justthisguy
    Oct 16, 2007 at 6:22 pm

    This reminds me of a story. It seems that there was this extreme grumpy-loner libertarian guy who went off to live in Alaska, all by himself, and be totally self-sufficient. After a while, he got a toothache, and decided he needed to pull the tooth. He got his pliers and grasped the tooth with them. That really hurt. He kept trying, and each time he touched the tooth with the pliers, it was more difficult for him to make himself do that. It got to the point where he was using both hands on the pliers and his mind was struggling against himself so much that he could not make himself bring the pliers anywhere near his mouth.

    At that point, he got on the radio and called a helicopter to take him into town to see a dentist.

    Of, course, as an Aspie, I am aware of an engineering solution to this problem, which I found in a piece of online survivalist fiction:

    What he shoulda done was bend over a springy sapling and tie it that way, then tie a string from the tooth to the sapling, lie down and cut the rope holding the sapling bent.

    NTs ain’t smart enough to be real grumpy loners

  • Schwartz
    Oct 17, 2007 at 8:24 pm

    Sorry Joseph,

    Without publishing the risk of contracting the disease in the area you live, the statistics you provided are pretty useless.

    Additionally, no references are provided for the information, and I’ll bet they’re based on worldwide numbers which would be skewed toward deaths in 3rd world countries — hardly a useful statistic for someone living with modern healthcare.

    You really should provide scientifically useful and relevant data next time instead of some quack’s website.

  • Schwartz
    Oct 17, 2007 at 9:31 pm

    Kristina,

    “But then, what isn’t propaganda and misinformation—-DAN! and other providers of biomedical treatments could be critiqued on the same grounds.”

    If only your web blog associates would actually do that. I see nary a scientific criticism of the CDC from anyone despite it’s numerous flaws (including it’s mandate).

    I certainly apply the same critical eye to both organizations, and I find them both severely lacking.

    When I was investigating (and I mean really following up the references quoted by the government sources), it became extremely clear to me that there is piss poor information available to parents looking for reliable information on Vaccines.

    The reality is that there is little credible information on both the efficacy or the safety of most of vaccines. Add to that, unreliable published information about the diseases themselves (i.e. what is the risk of contracting and suffering permanent damage from measles in Canada?). Additionally, the last couple of decades have ushered in a significant increase in recommended vaccines when the whole premise behind the logic of some of these is not anywhere near proven. (i.e. eliminate the 7 of 90 most common types of illness X and hope that the replacements don’t cause more problems later)

    Add to that the lack of real safety testing, and this information leaves an investigative parent in a real quandry — Did you know that the safety trials of many vaccines don’t compare against placebo?

    Combine that with acknowledged conflicts of interest in the CDC, FDA, and peer-reviewed journals — let alone clear examples of spectacular failure to protect the public — and the case supporting vaccines is not nearly as strong as most people would espouse.

    And if you think your doctor is informed, that’s laughable. (my child’s doctor actually was remarkably well informed and does not object to not having vaccinations when I asked) Interestingly, several studies have shown that larger percentages of doctor’s (non-paediatricians) don’t follow the recommended vaccination schedules (10% in Sweden in a published study). That’s a pretty big percentage of medical health workers. I’ve seen a statistic here in Canada that 23% (can’t remember the source of this one) of Doctor’s don’t vaccinate their children for the flu.

    You can tell who’s actually doing their homework. The reality is that there is very little credible scientific information available at all and so choosing not to medicate is not at all unreasonable.

  • amy
    Oct 18, 2007 at 12:03 am

    (sigh)

    Schwartz. Medical research is mostly cobwebs. We do not know how most drugs work, really. On the whole, docs say goodbye to mol bio after boards; they don’t know the pharmacology. Unless you’re taking only medications and treatments that have been around for decades, you are a guinea pig.

    That said, the vaccine-related information available to parents with an internet connection, the ability to use Pubmed, and journal access is pretty freaking spectacular. You should thank Al Gore.

  • Schwartz
    Oct 18, 2007 at 12:57 am

    amy,

    I assume that Al made it all available online? That is a good thing. Good luck to the average Joe on parsing it though, and it doesn’t help that all one can read is the abstract most of the time.

    I personally purchased a number of studies when arguing with some science student online about some MMR issues. When I actually got the study I was shocked how disparate the conclusions were based on the content of the study. And this was from “peer-review”. So unless you have access to study details, and then take the time to read the study and references, you probably won’t really know the truth from junk science.

    Add to that, the fact that the statistics are manipulated more often than not, so unless you have source data, access to a critical review, or thoroughly understand statistics yourself, it is near impossible to discern the quality of the analysis.

    So yes, I can now read the abstracts and conclusions, but they often contain the same junk that the garbage science press likes to repeat like parrots.

    The only redeeming part is being able to find and read critical reviews. But quality ones are few and far between.

    But it was the access to information that totally destroyed any remaining trust in the medical esblishment. They no longer get the benefit of the doubt from me, everything must be referenced and checked. Especially enlightening was reading transcripts from the CDC meetings.

  • Cliff
    Oct 18, 2007 at 2:34 am

    Believe me, Schwartz, it doesn’t take that much effort to find someone critical of the CDC. Now, in regards to the mainstream scientific community, there’s another issue in regards to why that position isn’t mainstream. Why would the average grad student who has no connection to the government who writes in a peer-reviewed journal not write in the journal? I’ll leave that answer to you.

    Also interesting is how you find all of our doctors laughable, and yet yours in specific is knowledgeable because, and tell me if I’m wrong, he shares a viewpoint with you. Can you explain that access to all of our doctors?

    On a similar note, you state “you can tell who is doing their homework”. In fact, I can’t tell who is doing their homework, at least in regards to the post. Can you explain that?

    I’d also like an elaboration on the article you supposedly read very closely. After all, you took all that time to read it, so you must know the general procedures, the conclusions, and the general data. Could you generalize that?

    And what transcript at CDC meetings? Where did you find those, and can I be directed to that too?

    Cliff

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