I was looking through the feeds on the autism blogs directory, as I do everyday, and reading the various thumbnails, clicking through on those blog posts that I thought would be helpful to read, and I was struck again by the diversity of bloggers--the various opinions, beliefs, and experiences of them, and how it can be a bit disconcerting to be hit with this huge spectrum (pun intended) all on one page.
Some of the parents write about recovery and how slow it's going. Some write posts in support of Wakefield. Others write about triumphs, about fights with the school districts, about the heartache they feel when their child struggles. Then there are posts by autistic individuals sharing their experiences and their realities, often arguing strongly and effectively that their opinions, their words, should matter when it comes to how others are discussing autism.
The entire gamut of perspectives is there, and I try, each day, to read a few of the posts so that I can be reminded of just how diverse we really are in our experiences, beliefs, and opinions. I think that's important, to read them with a willingness to listen to their realities without judging.
That not judging part is hard. It really is, especially the farther away these other people's realities get from our own realities. And that's why it's all the more necessary to keep reading those people whose lives are drastically different. I don't want to be in an echo chamber where I only get high-fives, and I don't want to be in an us versus them contest, either. I don't want to have a sparring contest to see who can get the most points. I don't want to see other people as adversaries or as nemeses to be taken down.
I've gone soft, mushy, disconnected from much of my snark most of the time, and there's a good reason for that, I believe. I've been volunteering for hospice for nearly a year now, and one of things, the most important thing, that we do is to accept families and the dying patient where they are. We support unconditionally. We don't challenge beliefs. We don't judge those beliefs as wrong. We simply try to be there and offer comfort.
I think it's impossible to be that kind of person in that setting and not have it color your perception in other settings. Having been allowed access to some of the most difficult, painful, private moments in strangers' lives, it changes how one looks at other people and their realities.
It can't remove all judgment, of course, as we're human, but it does tinge many experiences with empathy and compassion. So when I read posts by parents supporting Wakefield, certain that vaccines are the culprit, that recovery from autism should be sought by using every available means, I no longer get angry and feel I need to react to them personally and tell them how horrible they are or how wrong. Am I saddened, disappointed, frustrated? Yeah, but...I'd rather offer support for where they are emotionally then attack and make their lives worse. I don't want to make somebody's day worse, and I regret when I've done that in the past.
I know the vaccine wars rage on--I read those posts, too, and facebook pages where each side is certain of the superiority of its position and the quackery and nastiness of the other. There's not much difference in tone or language between the two groups as they wage war against each other. And it is war, a pitched battle, where the other side is often seen as evil--certainly, villifying the other side is the name of the game.
Take the bleach cure, for instance. Those parents who have used MMS cannot believe that it is bleach--will not. Even if they were willing to be open to what the FDA says, it's going to be an uphill battle to reach them. Mike McCrae writes about Deanna Kuhn's categories of how we evaluate evidence, noting that we move through stages, with the first stage being a realist--we believe what we see, so one can see how anecdotes would be the most important evidence to a realist. McCrae continues to the second stage--that of the absolutist, which is exactly what it sounds like--other people may think differently than us, but they're wrong and we're right. Many of us move beyond those two stages and become able to consider multiple perspectives and "open to negotiation."
When the stakes are high, and we are invested deeply in something, like parents of autistic children trying desperately to help their children become normal or healthy (if they are sick or see them as sick), being realists and absolutists is often understandably where they're going to be stuck. How can one expect a parent who's read Humble's promises (or Boyd Haley's) and bought into them to be willing to consider for even a minute that they were wrong--to confront the horror that they used industrial bleach or mining chelators on their children? And so the more we confront them, the more entrenched they will become.
We cannot, as a skeptical, scientifically-minded community of bloggers who write about this stuff, expect that we're going to convert those people who have bought into these charlatans offering cures. The best we can hope for is to reach those parents who haven't bought into it yet.
Anger at child abuse, and make no mistake, it is child abuse to give a child industrial bleach orally or rectally, is a must--it will fuel our future writings and prompt us to action to make sure that no more children have this happen, to make that product unavailable so all those children who have been subjected to it will never suffer that abuse again.
At the same time, we need to realize that almost none of those parents will ever accept or believe they did anything wrong.
People are complicated--our brains are wired in such a way as to make it hard to know when we're being steered in the wrong direction--we discount information that doesn't agree with what we know, and some of the time even before we are conscious of that discounting--we just flat out don't notice it.
It's a wonder we get anything right. It's why the scientific method is so important. It's why being aware of how we tend to be absolutists is our best bet for avoiding it--or at least letting us limit the damage.
I am both amazed and unsurprised at the parents who keep insisting that MMS is not bleach, even when one shows them several sources showing it's industrial bleach (which means it's stronger). I don't get it, from an emotional level--how they can so discount that evidence. But I do get it when I look at it from the cognitive perspective, from what I know neuroscience has shown about how our brains work.
There aren't any easy fixes-- no way to make those who believe differently to jump that divide and see what we're saying is the correct information. There isn't. They have to get there on their own.
So in the meantime, we'll simply have to work hard to shut down the charlatans and get the dangerous quack treatments off the shelves. We'll have to continue to put out accurate information and hope that it has an impact.
Is it an uphill battle? Yeah, it is. And it's not for the faint of heart. I think of friends and people I know who've spent decades fighting this uphill battle, how wearying it is. But they keep fighting the good fight, and they do it with civility and with substantiated evidence. Day after day, year after year. In the end, we have to live up to our convictions and do so in a way that allows us to look in the mirror and respect what we see, and I think that if we lose our compassion for others, if we allow ourselves to see those who believe differently as enemies with evil intentions*, we lose a vital part of ourselves and any chance of bridging divides.
*Just because the "other side" does doesn't mean we have to follow suit.
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