Autism Complementary and alternative medicine Medicine Quackery Skepticism/critical thinking

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.

By Orac

Orac is the nom de blog of a humble surgeon/scientist who has an ego just big enough to delude himself that someone, somewhere might actually give a rodent's posterior about his copious verbal meanderings, but just barely small enough to admit to himself that few probably will. That surgeon is otherwise known as David Gorski.

That this particular surgeon has chosen his nom de blog based on a rather cranky and arrogant computer shaped like a clear box of blinking lights that he originally encountered when he became a fan of a 35 year old British SF television show whose special effects were renowned for their BBC/Doctor Who-style low budget look, but whose stories nonetheless resulted in some of the best, most innovative science fiction ever televised, should tell you nearly all that you need to know about Orac. (That, and the length of the preceding sentence.)

DISCLAIMER:: The various written meanderings here are the opinions of Orac and Orac alone, written on his own time. They should never be construed as representing the opinions of any other person or entity, especially Orac's cancer center, department of surgery, medical school, or university. Also note that Orac is nonpartisan; he is more than willing to criticize the statements of anyone, regardless of of political leanings, if that anyone advocates pseudoscience or quackery. Finally, medical commentary is not to be construed in any way as medical advice.

To contact Orac: [email protected]

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