Respectful Insolence

You haven’t walked in my shoes!

At the risk of muscling in on Bronze Dog‘s territory, I’ve encountered a phenomenon that ought to be in his list of doggerel but doesn’t appear to be. It appeared in the comments of my post about the Arthur Allen-David Kirby debate and my discussion of how the human tendency to see patterns where none really exist, coupled with the emotional investment the parents of autistic children have in their children and fueled by unscrupulous purveyors of harmful woo like Mark and David Geier, manages to keep the myth that mercury in vaccines is responsible for the “epidemic” of autism alive. My point was not that these parents are stupid (as in any population of human beings, some are stupid, some are very intelligent, and most are somewhere in-between) but rather how the above factors can make the science that is increasingly failing to support the contention that mercury in vaccines causes autism seem at best indifferent to their plight or at worst part of the perceived conspiracy to hide the “truth from them.” My comments brought a stinging rebuke from a reader named Steve:

I love the comments from people who don’t deal with autism every day diagnosing the mind set and beliefs of those that do. I am the parent of an autistic child and I do believe mercury is a part of the issue. I watched my son’s communication and social skills diminish rapidly within a week of receiving a flu shot containing thimerasol. I have used chealtion therapy and seen it work, I have used special diets (GFCF) and biomed supplements and seen immediate results.

I was not anti-vaccine, I am now though having directly seen its impact. I am not anti Big Pharma, my father worked for Big Pharma for 36 years retiring as an executive with one of the largest pharma firms in the world. I am not looking to sue Big Pharma or the Government, I just want truthful answers from them. Remember when smoking was not bad for you, the same will eventually come out about thimerasol and the over vaccination of our kids.

Follow the money… You think us parents are in this for the money? I have spent over $70,000 on my sons care the past two years in therapy, supplements and medical care. All out of my own pocket, so to say we are in this for the money is idiotic. I would do it all over again as well because I have seen dramatic improvements in him.

If any of you critics ever walked a day in the shoes of the parent of an autistic child your mindset would change rapidly.


This is a tough criticism to deal with, but not because Steve makes much of a valid point. It’s tough to deal with because it’s clearly meant to imply, in essence, that his personal experience trumps everything, that his personal problems dealing with an autistic child render my observations invalid. In other words, it relies on emotion rather than addressing the argument based on evidence and, whether it is the intent of the person using this doggerel, seeks to embarrass the skeptic into silence. In essence, Steve is using the doggerel that says: “You haven’t walked in my shoes; so you can’t understand!” On one level he is correct. No doubt he has had many difficulties, and no doubt I would never be able to understand at a truly visceral level how hard it is for him or other parents, no matter how empathetic I may try to be. No one, least of all me, would ever say that it’s anything but extremely difficult to raise an autistic child, particularly if that child is lower-functioning. (Indeed, I’m not sure that I could deal with the day-to-day issues that no doubt Steve handles with aplomb.)

None of this means that my observations should be discounted just because I do not personally have an autistic child or that it’s valid to assume that my mindset would “change rapidly” if I were forced to “walk a day in the shoes of a parent of an autistic child.” It may or may not. Also, I assure Steve that, even though my mindset would probably change in many ways were I forced to walk in those shoes, there is no doubt whatsoever in my mind that, with regard to the now discredited idea that mercury in vaccines causes autism, my mindset would change not one iota, and that’s because the only thing that could change my mind about it would be convincing epidemiological and/or scientific evidence in support of the concept, evidence that is at present sorely lacking and shows no sign of being reported any time soon while study after study pile up showing no link between autism and mercury. Kirby’s risible handwaving and speculations would not seem any more plausible to me if I had an autistic child.

As for my observations about the “mindset” of parents of autistic children, I do not just speculate idly, but rather base them on the very words of many of those who post on my blog, and on Kevin‘s, Joseph‘s, Dad of Cameron‘s, and Autism Diva‘s blog, as well, plus numerous online conversations and forums. It is the subset of parents who voice these opinions about vaccines, big pharma, and the CDC about which I made my observations. Moreover, when coupled with, for example, my experience with alternative medicine aficionados, it becomes clear that there is a set of parents who, as I stated, erroneously generalize the diagnosis of their child’s autism near the time of his or her vaccination to mean that vaccines caused the autism, who truly seem to believe there was and/or is a conspiracy by the CDC to keep the “truth” about vaccines from them, and who fall under the sway of the cottage industry designed to sell them “cures” based on the mercury myth, even to the point of spending enormous sums of money to subject their autistic children to potentially dangerous “treatments,” such as chelation therapy and chemical castration with Lupron–all based on the mercury “hypothesis.” Again, all of this probably derives from the human mind’s tendency to look for and latch on to patterns, coupled with a parent’s understandable desperation to do something–anything–to help their child. Science is needed to see if those patterns are valid, if correlation truly does equal causation. In the case of mercury and autism, science has shown no correlation.

But back to the doggerel. Let’s take a closer look at this particular one. If we were to concede Steve’s point, then I’d have to ask: Does that mean that I can’t comment on cancer and cancer patients if neither I nor anyone in my immediate family has ever had cancer? (And how do you know that I or one of my family members hasn’t had cancer?) Does that mean I’m not suitable to comment on, for instance, homelessness if I’m not myself homeless or don’t have a homeless family member? Or what about religious cults? I’ve never belonged to one, nor has any of my immediate family? Am I therefore disqualified to discuss cults, the sort of thinking that leads to cults, etc.? (The list goes on.) Of course not. And, of course, it’s hard not to point out that David Kirby does not have an autistic child, either, but he’s certainly not shy when it comes to presenting his views on what the parents of autistic children want and believe. Just read his book and articles and listen to his talks. Why is it that this lack of any direct personal experience with autism is not a problem for David Kirby but it is for me and any skeptic who doesn’t happen to have an autistic family member? It couldn’t be because I’m critical of this focus on mercury (mainly because the science doesn’t support it), while David Kirby buys into the mercury conspiracy-mongering and tells parents like Steve what they want to hear, namely that it really is the mercury, could it? Perish the thought!

In any case, my usual counter to the doggerel that I can’t understand because or that my mind would change if I were forced to walk in the “other side’s” shoes is that almost certainly my mind would change about some things but that it would almost certainly not change about the pseudoscience in question, be it mercury and autism, the Hoxsey therapy and cancer, or whatever. That’s because I base my opinions on these matters on science, and unless new and convincing scientific evidence emerges to contradict existing evidence I see no reason to change my mind. Moreover, here’s another fallacy of the “shoes” argument: Being directly involved with something as demanding and emotionally draining as raising an autistic child can undermine a parent’s objectivity to the point where the transparently dubious arguments of someone like David Kirby start to sound plausible, particularly if that parent does not have the background in science to see them for what they are, so desperate to make their child “normal” again is he or she. Because autism is frequently diagnosed around the time period children are getting their vaccines, this is seen as evidence that vaccines cause autism, and parents spending $70,000 and more on interventions like chelation therapy and special diets look for any sign of improvement afterwards. Often they find it, thanks to confirmation bias and the lack of ever having observed a control group. They “see” what science does not, but what they “see” is misleading.

In any case, this bit of doggerel suggesting that because you haven’t experienced what the other person has experienced your opinion is not to be taken as seriously can occasionally be a valid argument (in the case where primary experience is essential to be qualified to form an opinion), and it is true that far too many people will spout off about topics about which they have no personal experience, but lack of personal experience is far less of an issue if the person has spent the time learning about the topic at hand. Far more frequently the “shoes” doggerel is nothing more than a distraction, a means of excusing oneself from having to address the substance of the argument being criticized.

Maybe Bronze Dog will add this one to his Doggerel series, perhaps with his own inimitable take on it.

Comments

  1. #1 Bronze Dog
    January 24, 2007

    Must be synchronicity. I was just thinking of coming up with another entry for the day. Count yourself added to the list.

  2. #2 Bronze Dog
    January 24, 2007

    Oh, and the series, as always, is ongoing. The suggestion box is still open, and I doubt we’ll ever run out of specious, contentless arguments to dissect.

  3. #3 Joseph
    January 24, 2007

    And the fact is that most parents of autistic children don’t attribute autism to vaccines.

  4. #4 Prup aka Jim Benton
    January 24, 2007

    I am not disagreeing with your main point AT ALL. Your point is more than valid about autism, (and, as you point out you HAVE both studied the science AND had the advantage of hearing the experiences of parents of autistic children).
    But your examples show both the dangers and the benefits of the ‘walk a mile in my shoes’ argument, and (sorry, BD) how dangerous it is to go too far in either direction. You need both the distance of studying the question from a ‘logical’ point of view AND the experiences.
    You mention a religious cult. No, you don’t have to ‘have been there’ to talk about it, but talking with people who have helps greatly to understand what they went through and why.
    On the other hand, you have to realize that they may have tunnel vision and magnify their own experiences too much. One problem with much of the atheist writing I read is that these people are really attacking the cult called ‘Christianity,’ and more importantly, think that the Christianity they were exposed to growing up is the same as Christianity as a whole, that ‘all Christians’ believe what they — the writers — were taught in their Sunday schools. Thus they condemn ‘Christianity’ for being homophobic, or creationist, or bigoted, or believers in biblical inerrancy — all of which is true of only some groups and sects of Christianity.

    But what really stirred me to responding was your mention of ‘homelessness.’ Unlike, I’m sure, the vast majority of people who read your blog, I HAVE been homeless — spending a period of almost six months living in a homeless shelter — not for ‘research’ but because I had to. My experience of homelessness was not, necessarily, what other people have had, but it was substantial enough that I can say most people — on both sides, the ‘they are all bums’ and the ‘they are all innocent victims of society and our messed-up economic system’ — who talk about it have no conception of the actual situation. (In fact, my own experience is that most people can’t grasp or discuss the situations of those a few steps, up or down, from themselves on the economic ladder. People who have never, involuntarily, missed a meal in their lives don’t know what it is like to have to live on a minimum wage, or to — as I did — be in a place where the bathroom was in the hall and you had to leave your door open when you went because if it closed, it had already been locked and you wouldn’t be able to get back into the room until you paid what you owed. On the other hand, people who live from paycheck to paycheck can’t fully grasp that the economic problems of people they’d consider rich are anything more than trivial.
    So don’t entirely dismiss the ‘walk a mile’ argument. Personal experience doesn’t trump science, of course, which is why your autism pieces are so powerful. But it can trump ‘logic’ which is always subject to the “GiGo” danger. (And THERE’S a subject worthy of a ‘Doggerel.’)
    Not the clearest post, rushed to finish before the cats — including a sick one — demand breakfast, but I hope my point came through.

  5. #5 Orac
    January 24, 2007

    Prup,

    I see your point, but I did say:

    In any case, this bit of doggerel suggesting that because you haven’t experienced what the other person has experienced your opinion is not to be taken as seriously can occasionally be a valid argument (in the case where primary experience is essential to be qualified to form an opinion), and it is true that far too many people will spout off about topics about which they have no personal experience, but lack of personal experience is far less of an issue if the person has spent the time learning about the topic at hand. Far more frequently the “shoes” doggerel is nothing more than a distraction, a means of excusing oneself from having to address the substance of the argument being criticized.

    I would argue that your example of homelessness is probably such a time when the “shoes” argument probably has validity. However, if you were saying, for example, that homelessness is a “government conspiracy” (something roughly analogous to what Steve was saying about vaccines and autism), then I’d have to say that, no, your bitter experience of homelessness probably doesn’t make your word on a “government conspiracy” much–if any–more authoritative than that of someone who has studied the issue. Similarly, if Steve had been discussing, for example, the difficulties he’s probably had taking care of his child, gaining educational services, etc., then I would not have used this argument. It’s all about relevance.

    As for your cult example, isn’t that exactly what I’ve been doing with the parents of autistic children, talking with them?

    In any case, I did realize that I might catch a lot of flak over this post, and in actuality I’m quite curious about what the parents of autistic children who check in here from time to time have to say (other than John Best, of course; I know what he’ll say, and his “contributions” are usually nothing other than hate and bile).

  6. #6 Dunc
    January 24, 2007

    Follow the money… You think us parents are in this for the money? I have spent over $70,000 on my sons care the past two years in therapy, supplements and medical care. All out of my own pocket, so to say we are in this for the money is idiotic.

    Nobody’s saying you’re in it for the money Steve – that would be ridiculous. We’re saying that some of the folks you’ve handed that $70,000 to are in it for the money.

  7. #7 Mustafa Mond, FCD
    January 24, 2007

    Geez, this guy needs less emotion and more facts. How could I possibly know what it’s like to walk in his shoes? He doesn’t even mention what size they are.

  8. #8 Do'C
    January 24, 2007

    Personal experience doesn’t trump science, of course, which is why your autism pieces are so powerful. But it can trump ‘logic’ which is always subject to the “GiGo” danger.

    Alien abductions come to mind.

    Are you suggesting personal experience isn’t always potentially subject to GiGo too?

    Your sharing of specific examples related to homelessness also suggest that you might think it is possible to impart experiential knowledge to others.

  9. #9 Ruth
    January 24, 2007

    2/3 of my ob/gyn’s were male, but they were quite as capable as the woman who had given birth prior to assisting me.

    Many of the mercury=autism parents reject my experience ‘because your kid is high finctioning’. Many of the non-verbal adults on autism hub have been accused of ‘not really being autistic like my kid’. They are not your kid, but they may have had the same issues as a child.

    A neighbor recently expressed surprise that my daughter is in special ed. I explained a bit about the hard work of the last 5 years needed to bring her to this point. She was open to the information, she had just not encountered much about autism before.

    I have delt with cancer, AIDS, autism and dementia in my immediate family. Knowing the likely outcome allowed us to make the most of the situation, without the waste of time, money and emotion that quackery will cause. I hate to see people preying on vulnerable parents, diverting time and money that would be better spent on good speech and occupational therapy.

  10. #10 Ruth
    January 24, 2007

    ‘Many of the mercury=autism parents reject my experience ‘because your kid is high finctioning’.’

    Sorry, that’s ‘high functioning’ of course.

  11. #11 Tanta
    January 24, 2007

    You know, Orac, I can’t walk a mile in my oncologist’s shoes. (Some days I can’t walk a mile in my own shoes. Some days I can’t find my own shoes.) I have no idea what it really, really feels like to write a prescription for chemo drugs. To cut off breasts. To bring up the Advance Directive in casual conversation with someone who doesn’t want to talk about it.

    But I try to understand what that’s like, if for no other reason (and there are plenty of other reasons) than that it keeps me from becoming a self-involved self-pitying whine bucket who is firmly convinced that you overpaid sadistic shills of the drug companies do this on purpose and NO MERE DOCTOR HAS THE RIGHT TO TALK TO ME ABOUT SUFFERING.

    I–and everyone else–overheard a young resident care for a patient like that in the infusion center a few months ago. I was so impressed by the way she made it clear that she understood why the whole awful conversation was happening, even while she didn’t stop acting like a doctor. I’ve said the same things that patient did, I just try to say them at home to the furniture, to get it out of my system, before I go back to hear what the doctor has to say next. But then I agree with you that the fact that my doctor doesn’t appear to have cancer–I haven’t seen his CT, you know–does not mean that he “cannot understand” why I sometimes sign the consent forms and sometimes don’t. It would seriously piss me off if he stopped trying to present the scientific side of the debate. Then we’d all be walking in my shoes.

  12. #12 anonimouse
    January 24, 2007

    I’ve always sensed that some parents of autistic children feel they have a right to do whatever they feel is necessary to “treat” their child. This is a far more common phenomenon when you’re talking about parents who believe in the mercury/autism/poisoning barely-a-hypothesis.

    And what these parents dislike, more than anything, is to be told that their attempts to treat their child with things like Lupron or chelation are bad ideas. That they might be harming their child instead of helping them. That the whole mercury-autism link is probably non-existent.

    I think that’s why so many of them lash out – because they believe they’re doing the right thing, they’re desperate to help their kids, and they don’t want to be told otherwise. If it means they have to break the rules of polite society from time to time (see the EOH board) or disregard public health policy, then so be it. That’s why you hear “you don’t understand what it’s like” so often, because in their minds their child’s situation is so dire and their options are limited and time is running out and you are not doing anything to help the situation.

    I think some, maybe most, of that desperation, is crafted by folks who have convinced people that autism is an awful thing, and that being autistic dooms a child to a sad and pathetic existence. That is what galls me more than anything, and why I get sad when many of these parents don’t listen to the adult autistics or attempt to minimize them. Or worse yet, when they don’t listen to the parents who explain that their kids do get better without spending $70,000.

    This isn’t about whether chelation works or doesn’t work in the treatment of autism. I don’t believe it does, but it’s always possible it might. This is about a mindset that autism is something so awful that people will go to desperate lengths to get rid of it, spending their life savings on unproven treatments or questionable therapies. And once you have that mindset, any attempts to question a parent’s tactics are going to be met with strong resistance.

  13. #13 qetzal
    January 24, 2007

    In case Steve or any others of similar mindset read this, I’d like to ask, in all sincerity:

    Which is more important to you – being certain in your own mind that mercury in vaccines causes autism, or determining beyond reasonable doubt what actually does cause autism (whether it’s mercury or something else)?

    Of course, if mercury in vaccines really did cause autism, we’d want to know that and accept it. But if it does not, we’d want to accept that too, so we can focus on trying to find the real cause. Agreed?

    People who have studied this scientifically are telling you that the evidence shows, beyond reasonable doubt, that mercury in vaccines does NOT cause autism. Not that it’s absolutely 100% proven, of course, but the evidence is quite strong. The only real way to dispute this evidence is to invoke highly unlikely things like conspiracies across a large segment of the scientific and medical community.

    Are your beliefs about vaccines so important that you’re willing to invoke such improbable scenarios to defend them? Is that really in the interests of your autistic children?

    Please understand this is not meant as an attack. Like Orac, I don’t pretend to know what you are going through. I sincerely sympathize with your situation, even if I can’t fully appreciate it. But I hope you’ll consider the possibility that blaming vaccines may be not just wrong, but actively harmful to the interests of autistic children.

  14. #14 notmercury
    January 24, 2007

    Ruth said: “2/3 of my ob/gyn’s were male”

    Well I hope it was the bottom 2/3 :-)

  15. #15 Jessica
    January 24, 2007

    Well, Qetzal, I can’t say I fall into exactly the same class as those to whom you posed your question, but, I’ll just mention this.

    When my son was diagnosed over 3 years ago, and he is quite low-functioning as horrible as that term is, my husband blamed me, my friends blamed vaccines, I blamed random chance, and my family just gave a collective shrug and said, “well, he’s ours and he is what he is.”

    I wanted to know if vaccines had anything to do with it, and it is so tempting, speaking as a parent, to kill yourself with accumulated debt in the desparate hope that you will have a miracle-recovery that you can call your own. And I used those terms, specifically. At first, I wanted my son recovered not so much to make his life better, but to make the household, and thereby my life, easier. I know, amazingly selfish, eh?

    But, the science didn’t bear out the hypothesis of mercury vaccines, so I discarded that. Both my children are completely vaccinated. Only my son is on the spectrum. I’ve dabbled with diet and found physical improvements, specifically the loss of “baboon-butt” which makes him feel better, and thereby we all benefit. We’re in a great school system, and despite wonderful attention by skilled professionals, we’ve seen little improvement.

    Now, those earnest and well-meaning folks around me are clamouring for chelation. But, I am too aware of the dangers to consider it. Frankly, it would make me sleep better at night to know that this was all the cause of some evil conspiracy, and I’d probably spend any amount of money on any crazy cure as long as it was a) proven effective and b) came with a true evaluation of risk. But, until then, we don’t have the luxury of spending money we don’t have on treatments that are dubious at best, and lethal at worst.

    But, I do understand that overwhelming desire to grasp at anything, no matter what, to change the course and to somehow re-attain that sense of equilibrium that is lossed immediately upon diagnosis.

    My son is a great kid, and saying that, yes, I’d love it if he could talk to me. Maybe he will. Maybe he won’t. But, I’m not willing to sacrifice him just to see…the possible outcome could be just too final.

  16. #16 Stephen
    January 24, 2007

    This is an extreme example, and perhaps rather unfair in the present context. But whenever someone says to me things like “you can’t understand this because you have no personal experience of it” I cannot help thinking of my conversations with white South Africans in the 1970′s and 1980′s. At the slightest whiff of criticism of apartheid they’d trot out the line that no-one could understand apartheid unless they’d lived in South Africa.

    Of course, as we now know, pretty well the only people who could not understand apartheid were the white South Africans.
    (Excluding of course the praiseworthy exceptions such as Donald Woods.)

    Sometimes personal experience clarifies things greatly. Sometimes it blinds you to the obvious.

  17. #17 anonisme
    January 24, 2007

    I’m high-functioning, and a scientist. And I want to stick in my two cents, as someone who lives it and also has the major sensory processing issues to boot.

    The vaccine connection, in my humble opinion, is not about mercury. It’s about the immune system. Whether it’s the SPD or the nature of what it does to us to live in your world, we are easily triggered and easily sick. It’s not the mercury, it’s the immune system stimulation. I’ve had to be very careful as an adult about immunization and boosters because of the weeklong reaction and the issues. But did I avoid it? No. It scared the shit out of me, but I had boosters under controlled circumstances.

    The other mercury/ diet/whatever connection. I have problems eating, problems with reacting to everything. I eat a high carb bland diet. I easily end up with malnutrition disorders. Food is always a struggle. I eat only ‘organic’ high quality food that is freshly prepared. Junk food would kill me. Most ‘average’ people including the well-meaning parents, like mine were, have NO IDEA how much crap is in our food, the stuff in the soap and laundry, the smells in the house… it drives me crazy. I feel like I will move into a bubble.

    The entire range of autism-spectrum disorders is a genetic, inherited, neurobiological wiring difference, and there is no ‘cure’ and frankly it’s not a disease. However trying really hard to reduce the SPD and triggers, and respecting our need for a different environment, goes a long way towards making our life liveable.

    Please give up on the mercury and the chelation and whatnot, and focus on the real issue: we don’t process our environment the way you do, and we never will. Help your kids or friends to not have to poison themselves with bad food, bad environments, and your judgements.

    Thank you.

  18. #18 Sid Schwab
    January 24, 2007

    Because I think it’s the most excellent, I repeat one of your points: whereas walking in the shoes gives certain knowledge and insights that others may not be able to obtain, it also specifically diminishes one’s ability to be objective about the science — especially when the science tells you what you desperately (because of the shoes) don’t want to hear.

  19. #19 Lucas McCarty
    January 24, 2007

    It is incredible though that whilst some parents continue to use that “Walk in my shoes” gambit, they are not averse to making the most tallest assumptions about Autistic adults they have never even met but simply disagree with them.

  20. #20 Flex
    January 24, 2007

    When I read that comment by Steve earlier in the day, I thought of responding myself. As usual, Orac, you have done a far better job that I could have.

    I do, however, have one further point to make. Orac suggests, IMHO rightfully, that if he was to ‘walk’ in Steve’s shoes, he would have a better appreciation of the problems facing Steve. So would I. Yet, if as a result of that experiance Orac did loose his critical thinking skills and started to embrace the idea of a vaccine-autism link, that still wouldn’t make the link true.

    Orac has done an admirable job showing there is no reasonable evidence of a link between vaccines and autism. Orac has also shown that this linkage has been studied, and no linkage has been found. The evidence that Orac has presented doesn’t go away, even if Orac himself starts to deny it.

  21. #21 notmercury
    January 24, 2007
  22. #22 Anuminous
    January 24, 2007

    Before you criticize anybody, you should always walk a mile in their shoes. That way, once you do criticize them, you are a mile away, and have their shoes.

    (thanks to Jack Handy)

  23. #23 Kev
    January 24, 2007

    As Dad to a daughter diagnosed with ‘low functioning autism’ I’d first like to say thanks to Orac for a great post and thanks to the commenter’s above me for great comments.

    There is no way to win against the mercury-autism folks in this respect. Even those of us who are ‘low functioning’ (and that’s not as rare as you may think) or who have ‘low functioning’ children ourselves are told we can’t possibly understand how difficult the lives/circumstances are that they live. Its a way to maintain the illusion that vaccines have done ‘something else’ to their kids.

    I used to ascribe to that and, like Jessica, after examining the science, I now don’t. However, I continue to see the very real damage that the mercury-autism people are doing not just to our respective national vaccination programs but also to the potential of our kids and the current generation of autistic adults.

    Ignorance and stigma are a million times more harmful than the MMR or any TCV. I don’t want a cure for my daughter, what I want is for knowledge to replace ignorance and familiarity to replace stigma. Then my daughter and all the others like her will be able to have a future. The mercury-autism hypothesis perpetuates ignorance and stigma and that’s why I fight it as much and as hard as I can and why I appreciate the words of others, like Orac, who do too.

    If Orac’s readers want to do one thing to help autistic people its to please be as vocal as you can about the unmitigated, stigmatising rubbish that is the vaccine/autism hypothesis.

  24. #24 pv
    January 24, 2007

    Excellent article. Articulate, informed and to the point. It concurs very much with my conversations here in Italy with researchers into Autism spectrum and Aspergers, and the parents and carers of the sufferers. I have reason on occasion with my son to visit an institution known as La Nostra Famiglia, where they research and care for the sufferers of most of these types of childhood disabilities. I have never once encountered a parent voicing or subscribing to the view that mercury causes autism. All seem to be firmly behind, and grateful for, the very difficult and harrowing work that serious researchers are undertaking. And I have to say this too. The the medical staff I encounter at La Nostra Famiglia in Conegliano and Udine are nothing if not deeply caring and sensitive about their work.
    When I read of the quacks who prey on the desperate, who do not one jot of proper research but falsify, mis-quote and cherry pick at the work of others, I am at a loss to understand how they can be so despicable and why they aren’t in prison.

    PS. to Jim Benton. Atheism, which is irrelevant to this topic, is not against the “cult” of christianity. I am an atheist (jewish father and protestant mother) and I do not believe in any deity, superstition or the supernatural. This includes the gods of christianity, islam, judaism, hinduism, seikhism… The problem of religion to atheists is that each religion seeks to foist its own exclusive world view on everyone not of that faith, on pain of death even. To an atheist all deistic religious philosophies are superstition, unsupportable, in addition to being absolutist. They are all exclusive and, historically, equally murderous and obnoxious. You mentioned christianity exclusively and I just wanted to correct your error.

  25. #25 LF
    January 24, 2007

    No way are mercury or vaccinations to blame for autism. This is not a new subject. It was seen in Gillberg’s 1980 study of Maternal age and Autism that the fathers were much older than the general population. The average mean age of the fathers was 34. In a study of 943,664 children in Denmark published in 2005, the highest risk for autism was found in families with a history of autism, Asperger’s syndrome and other PDDs in sibings.Also if the mother was diagnosed with a psychiatric disorder. And with increasing PATERNAL and not maternal age in families without prior history. It is commonly accepted knowledge that genetic factors are involved in the etiology of autism. Lauritsen, MB et.al.Child Psychology and Psychiatry September 2005. Sperm are quite subject to DNA damage with the age especially the genes having to do with neurological development. Autism is rare in, non-familial, cases in children of fathers under 30.

  26. #26 Inquisitive Raven
    January 24, 2007

    Hi, I was born in 1962, before this alleged autism epidemic, and it’s possible that I have Aspergers. I’ve never been formally diagnosed because when my parents sent me to a shrink in the mid-70′s, Aspergers was not a recognized diagnosis in the US. Apparently, the shrink told my parents that I have “something like autism.” I can’t picture either of them buying into the whole mercury scare since they were both MD’s, and my father was a researcher.

    I think that you could make a pretty good case for paternal gamete damage since 1) my father was, IIRC, in his late 20′s when I was born and 2)he spent his work days in the labs studying rats with cancer and giving hamsters emphysema. Please bear in mind that historically speaking late 20′s is late to be starting a family, and I don’t know what he was giving those rats to make them cancerous. He was injecting the hamsters with papain to give them emphysema.

    BTW, as evidence against whole medical establishment/Big Pharma conspiracy theory of suppressed cancer treatments, my sister died of an adrenal carcinoma that metastasized to her liver,and my parents never even considered any alternative treatments. Remember, my father did cancer research; they knew better. I remember my father commenting after a session with my sister’s oncologist where said oncologist had tried to be reassuring, that he knew too much about the subject to be reassured.

  27. #27 David Harmon
    January 25, 2007

    And what these parents dislike, more than anything, is to be told that their attempts to treat their child … are bad ideas. That they might be harming their child instead of helping them.”

    The trouble is, the refusal to confront this reality leaves the parents isolated from realistic responses to the situation in general. And as noted elsewhere, delusions seem to be habit forming. In the worst case, these parents can become Scott Peck’s “People of the Lie”, willing to commit almost any abuses rather than admit that they could have done something wrong.

    In direct contrast, we have among others, Jessica: ‘… my family just gave a collective shrug and said, “well, he’s ours and he is what he is.”‘ And there’s a much better beginning for doing something helpful….

    While I’m on the topic: Dr. Temple Grandin and Sean Barron, have just come out with another fantastic book: Unwritten Rules of Social Relationships. Besides being helpful for both autistics and their families, it makes a pretty good try at getting across to NT readers what it’s like to live on (in?) the autistic spectrum. (“NT” stands for “Neurotypical”. Feels a little funny, doesn’t it? ;-) )

  28. #28 mumkeepingsane
    January 25, 2007

    Wow, I could have written Jessica’s post, not every detail is the same of course but a lot of it applies to my family. It was almost eerie to read it and go “yes, uhhuh, yep, that’s us”.

    It didn’t take me very long to discount the mercury hypothesis. My son was born in 2002 in Canada and I checked every vial of vaccine he received. He’s never had a flu shot.

    My husband was in his early 20′s when we had our children and I can’t even find a genetic link (although that doesn’t mean it isn’t there).

    So basically, conclusion is we don’t know WHAT causes autism. Part of me hopes that one day we will but I don’t dwell on it.

    “and my family just gave a collective shrug and said, “well, he’s ours and he is what he is.”"

    “But, I do understand that overwhelming desire to grasp at anything, no matter what, to change the course and to somehow re-attain that sense of equilibrium that is lossed immediately upon diagnosis.”

    I agree with both of the quotes from Jessica’s comment. The best place to come from, IMHO, is that of unconditional love and acceptance. It was diffcult though. I personally went through a lot of “why me” and “this isn’t fair” and “how can I fix this, please, someone tell me how to fix this”.

    Raising a child with Autism is difficult. Before we had him I could not even imagine what it would have been like. But as Orac said, you don’t have to be in a particular situation to see bad science staring you in the face. I’m not sure I would have entertained (even briefly) the possibility of vaccines causing autism if my brain hadn’t been so clouded with emotion. Thank goodness I came out of that fog quickly before I did anything to my child other than do urine tests (which incidentally came back normal, which apparently to some mercury parents can be just as bad or worse than abnormal tests?? You gotta be kidding me).

    Sorry for the ramble. Thanks for letting me share my thoughts.

  29. #29 Junior
    January 25, 2007

    I also could have written Jessica’s post, but probably not as well. ;)I especially agree with this:

    “My son is a great kid, and saying that, yes, I’d love it if he could talk to me. Maybe he will. Maybe he won’t. But, I’m not willing to sacrifice him just to see…the possible outcome could be just too final.”

    I thank God that there are people in my son’s life that haven’t walked in my shoes, and so have a more objective view of the various treatment options. Emotional detachment is helpful for critical thinking. I am most grateful to my son’s pediatrician who saved us from going down a dubious treatment path, and did it with understanding and grace. To all the professionals like our pediatrician, keep up the good work.

  30. #30 rhubarb
    January 25, 2007

    I had the honor and the heartbreak of having a non-verbal autistic brother until his death at 21 in 1984 of testicular cancer, which he handled with grace, dignity, and even laughter at times (he found the spectacle of his hair falling out during chemo to be utterly entertaining). He was the youngest of us five kids, and my folks decided when he was diagnosed as autistic that, once they’d exhausted the paltry educational opportunities then available for him – every one of which they had to fight for in the courts – there was no question of institutionalization, the only other option at the time. Because my brother and I had something of a rapport, and because I loved him dearly and liked him, too, I made up my mind as a kid, and never doubted, that I’d step in full-time when they couldn’t look after him any more.

    I was spared that, if you want to look at it that way, and we were all spared the needless agony of the autism/mercury woo that still has a hold on so many desperate parents and caregivers. Both my parents, who are now in their 80′s, and I agree that Orac is doing an invaluable service for those who are fighting to do what’s best for their autistic loved ones. If I haven’t exactly walked in a parent’s shoes, I think I come close enough to reasonably comment about this issue. Jessica, mumkeepingsane, Junior, and all the other parents who are staying rational in an all-but-impossible situation have all my respect and sympathy.

  31. #31 Samantha
    January 25, 2007

    I have autistic children. I love my babies but I pay to God that no one else has to walk in my shoes. I read this blog not because Orac has walked in my shoes but because he saw parents like myself struggling in the shoes we have to wear and helped us by analyzing all of the stuff that is thrown at parents of autistic children. It is staggering the amount of false and untested information there is about autism causes and treatments. Orac I am so very thankful that you take the time to study it all. For me it frees up a few more brain cells to deal with the every day challenges of trying to teach my boys how to live in a world that is so alien to them.

  32. #32 Bill Brent
    January 26, 2007

    Here’s a paradox:

    ORGASM is a sensation you cannot describe or relate to easily unless you have direct experience, yet attempts to describe or relate it to others are often laughable, such as here:

    http://www.jackinworld.com/qow/q160.html

  33. #33 sneezy
    January 26, 2007

    ORGASM is a sensation you cannot describe or relate to easily unless you have direct experience, yet attempts to describe or relate it to others are often laughable, such as here:

    I disagree. I had heard the anticipation leading up to a satisfying and pleasurable sneeze analogy before (also mentioned on the linked page), and I thought it was pretty good. Not perfect, but definitely not paradox.

  34. #34 clone3g
    January 26, 2007

    Well I never tried Heroin but a junkie once told me the intense pleasurable sensation was similar to an extended orgasm. Believe it or not, I didn’t feel compelled to run out and score a bag of China White.

  35. #35 Xiaoding
    January 27, 2007

    Having a broken leg makes you an expert on what it’s like to have a broken leg. The guy who fixes broken legs is the expert on broken legs.

  36. #36 Mnemosyne
    February 3, 2007

    The vaccine connection, in my humble opinion, is not about mercury. It’s about the immune system. Whether it’s the SPD or the nature of what it does to us to live in your world, we are easily triggered and easily sick.

    Anonisme, that’s a fascinating theory. It would help explain why parents (at least anecdotally) associate the vaccinations their children receive with the initial onset of autistic symptoms.

  37. #37 Steve
    February 20, 2007

    Gee, this is great! It was fun to stir up the hornets nest. I was so successful that I got my own Orac the Magnificent article. Please send me a framed copy! Oh and my shoes are 10′s. Send me some cash to cover shipping and I’ll give you a pair of my shoes to have as your very own.

    To answer questions I saw when browsing comments:
    My primary care is to help my son, I do that by supporting his immune system, supplementation, diet and lots of ABA, Speech, OT and Special schooling. As I said, I also raise money for autism research by running marathons- so far over $18,000 in two years.

    I believe my son’s issues are caused by a few factors- Genetics primarily- genetic issues on both sides of the family, Immune/Gut issues- overuse of antibiotics for early ear infections, and yes I believe that a flu shot is a part.

    Again- I don’t know any of you, don’t give a rat’s ass about what you think of me or how I treat my son. I just think it is great that I earned my own post and was able to fill your compulsive need to have someone to rail against as “one of those people”

    For all those who have autistic children- whatever you believe or do, I wish you the best.

    For those of you that are autistic- Good luck in anything and everything you do.

    I am so happy I came back to see this, I accomplished my goal of aggitating you folks…