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Redrawing the Maps: Choosing Ingroups

September 5, 2010

The best post ideas come from conversations with friends, and as yesterday’s post was generated from a comment, so to is today’s. I won’t repost my long two-part response here, but I’ll continue with some of my thoughts on the lines that have been drawn in the autism community.

The most familiar line in the online autism community has to be the vaccine line. Do vaccines cause autism? The most vocal proponents of this idea (see any AoA post) go far beyond that concern and question all vaccines. They also provide really bad information in general on vaccines. And I mean that; it’s just flat out bad information. Even worse, though, than the misinformation spread by folks like Blaxill, Olmsted, and Heckenlively, are the comments left by individuals who frequently cross the line of decency  as well as veering into woo-woo land: they post vast conspiracy theorist ideas about how the government is plotting with big pharma to wipe out a generation of kids or are trying to make everyone autistic or other such nonsense.

Alright, so there are probably some good dividers here. If you think it’s good you don’t have a plane or you might fly it into a particular building, well, we ain’t gonna be on the same side of the line anytime soon. I think there are some clear dividers that I prefer to keep in place. Doesn’t mean I don’t feel a whole heap of compassion for the person and I’m certainly feeling it for the family, too.

At the same time that these folks are hysterical about vaccines, they are unabashed in their support of quack treatments as well as dangerous treatments for their children. No small irony there. They complain about the 14 studies, tout the monkey studies that lost monkeys, and give their kids mining chelators that have no studies behind them, then rail that their mining chelator has been taken away from them. Not a whole lot of critical thinking is occurring here. How often do we read one of these folks talk about injecting vaccines directly into the bloodstream? This gets picked up by others and carried forth, even though no vaccines are delivered into the blood stream. It’s like the 10% myth regarding brain use. We hear or read things and we accept it without even realizing it.

Remember when the AoAers were up in arms about the pig virus in the rotavirus vaccine? They couldn’t be bothered to look up how this vaccine was adminstered (orally, by the way). And yet, for some parents of autistic children, giving their children tapeworms from pigs is the thing to do. No small irony there, either.

Some parents insist that their autistic children are victims of heavy metal toxicity from the small amount of thimerosal in some vaccines and chelate their kids for YEARS. No gap in critical thinking skills there.

In other words, there are plenty of things that could serve to divide us as a whole, if we choose to put our focus there, and it’s hard at times not to.

I don’t have any easy answers. I have an abundance of questions, I have some clear principles I believe in, and I have a genuine desire to work to make the world a better place for all our children.

How do I best do this, though? I believe that the misinformation being spread by people looking to make a fast buck off of desperate people has to be countered. That’s one way to make the world a better place: provide good solid information and hope that it gets in.

Another way is to provide my students with the tools to think critically and evaluate claims. That definitely has the chance to impact at the individual level, and perhaps when these students have children, they will be equipped to make better choices. If I do my job right, I don’t have to tell them what to believe; they’ll be able to assess claims and evaluate the veracity of them on their own.

Okay, so those are the two ways that most long term readers of me are familiar with. But I also believe in redrawing these divisions that people put out there, redirecting the focus away from things that aren’t constructive. We can’t make other people believe the way we do. We can’t make them change their minds. Hammering them will not make that happen. It only alienates them and makes it impossible for them and us to see ourselves as part of the same group.

And we are a part of the same group. We are parents who are concerned about our children and their place in the world. We want our children to be successful. We want them to be safe and well. We want them to be happy. We go about it differently, perhaps, but for the most part, we want the same things. In those cases, we can and should set aside those dividing lines and offer support and community.

And there are undoubtedly some folks within the group as a whole who need a lot of help, who have more issues than their children do, and who are nearly as dangerous as those who are selling woo to desperate parents. I’m not sure what we do with those folks other than to have compassion and to reach out offering support to some of them, while with others we’re better off avoiding direct interaction with them and hoping that their local communities will see the need there and find a way to reach out to them to help them and limit the damage they’re doing to themselves and their families.

The Autism Blogs Directory is Kathleen’s and my attempt to redraw the lines in the online autism world. There are plenty of folks’ blogs represented there that I am not in agreement with. There’s even a fair amount of what I consider woo. Sometimes I personally find that uncomfortable; am I supporting woo? Or am I doing what I do with my students, providing some tools through this site to thinking critically and respecting people to make up their own minds as they venture out into the community? I’d like to believe it’s the latter. I’d like to think that we can all rise above the lines we’ve drawn and make our own decisions about supporting others emotionally while offering counterpoints to factually incorrect information when necessary.

I’d like to believe that compassion can win the day and help those who are struggling to find more adaptive coping methods, that care and concern can lighten another’s load, make the day a little more bearable, provide some glimpse of light. In short, that we can in fact make the world a better place right now for all of us, not just for our children in the future.


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