9/05/2010

Redrawing the Maps: Choosing Ingroups

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.

18 comments:

kathleen said...

Yes! compassion..understanding.. supporting each other.building a community. The most important things. If we want to make the world a better place for people on the spectrum-we have to put aside our differences in that respect. However, there is a lot of misinformation-and people making choices, arguments etc. based on something they heard..well, it makes my head spin.Providing the correct information is essential. It's hard because sometimes even then, it gets interpreted as "right fighting" and that is just a waste of time. I wish that I had an easy answer...

Clay said...

I dunno. I hope your approach works, eventually changes some people's minds. At least, you're getting correct information out there, so that maybe people will find your site first when they google, out of desperation.

lifewithasperger said...

I agree. I hope it works. it seems like an incredible uphill battle though.

Autism Mom Rising said...

Since vaccine are delivered sub-cutaneously (sp?) does that mean that at no time do the viruses and other components enter the bloodstream? Sincere question.

I don't read AofA much anymore. For those concerns I prefer Ginger Taylor because she writes without emotionalism.

I have nothing against emotionalism. I am emotional. My blog is emotional, but I don't write about the controversial stuff either. I just think if one is writing on controversial topics emotionalism makes it hard for people to take what you are saying seriously. Better to just stick with the logic of the topic, IMO. You do that well too.

A few weeks ago Ginger opened a post that simply read (paraphrase): "Did anyone know the CEO of Reuters was on the board at Merck?" Then she goes on to question if such could influence reporting on Gardisal and other drugs. She simply raised a question. No emotionalism. Could that affect reporting? She didn't prove that it does by any means, but it is a fair question. These close alliances of media outlets to multinationals, to the extent it is now, is fairly new...since media deregulation in the 80's allowed news conglomerates to merge and grow ever bigger. So, it is a fair question to raise: could these close connections influence reporting, not just on drugs or vaccines, but on any number of issues involving the business of large multinationals. That's why I like Ginger's work. She raises good questions.

I tend to think on many issues in life, including this one, truth lies somewhere near the middle, that there is some truth from column A and some from column B. So, on the controversial aspects of Autism, between reading Ginger and Countering, I get the best information from each side and I make up my own mind. My concerns are a synthesis of concerns from both sides. I most certainly wouldn't claim to have all the answers though.

In many ways I'm rather sick of the topic. I keep thinking vaccines is what we should do the next installment of "A Dispatch" on. Part of me is like, No, I don't wanna go there, no way. I go out of my way to not talk about tha on my blog. BUT, if anyone can go there in a two sided discussion, in a way that is respectful, it is you and me. Maybe there is some need for that inside this Autism bubble.

Autism Mom Rising said...

I was just thinking about how you mentioned that people often say that vaccines are injected directly into the bloodstream, when they are not. People pass this around as if it were fact. That is an excellent point and I stand corrected. Thank you :)

It does work both ways. I can't tell you how many times I've heard people say, "Autism rates went up after mercury was removed from vaccines". Yet, based on the information on the CDC's own website, we cannot yet possibly know if this is true:

Mercury was removed from all vaccines except some flu shots in 2001 -

http://www.cdc.gov/vaccinesafety/concerns/thimerosal/thimerosal_timeline.html

The current calculation of the Autism numbers (2006) is based on eight year olds born in 1998 -

http://www.cdc.gov/ncbddd/autism/addm.html

Until they start using data based on children born 1998 we cannot know if the actual numbers went up or down since mercury was removed.

I don't bring this up to make some statement about mercury's role in autism or if it even has any. As far as I know my own son never had mercury in his shots. I am just making the point that many people, no matter their position on vaccines, make assumptions that end up having no basis in fact.

Dawn said...

@Autism Mom Rising: vaccines given by injection are either subcutaneously (right under the skin, like the TB test) or IM (intra-muscularly - right into a large muscle. For babies, that's usually a thigh; buttock aka gluteal for children, and upper arm or gluteal for older children and adults.)

You need a large muscle so you DON'T hit a blood vessel and for slow absorption. You want the body's white blood cells (WBCs), T-Cells, B-cells etc (I will use WBCs to refer to the entire immune system to save typing) to have the time to identify the "foreign substance" so they can develop antibodies. If a vaccine was given into the blood, it would probably be broken down by the liver and kidneys (the organs that "detoxify" the blood) before the body had time to react to it. So, no, the components don't really enter the circulatory system except as handled by the immune system. Remember that MOST vaccines given by injection are "dead" bacteria or viruses(or parts of them); the body can still identify them and create antibodies. The few live vaccines (MMR) have too few antigens to usually cause the disease.

I made this pretty basic because I don't have any immunology books here and don't feel like googling much on Labor Day. :-) But I hope it answers your question, or at least gives a start. Arthur Allen's book "Vaccine" is a really good history of vaccines and how they work.

KWombles said...

AMR,

I think what follows may reflect some of my frustration, but it's not directed towards you. :-)

I get frustrated with the focus on vaccines, too. I've written before that it serves as a distraction from the more important things, but it certainly is a symbol of one of the more obvious divides within the autism community.

I think the bottom-line problem is that a lot of the human body is a mystery to most people; as a society our knowledge about our bodies is completely inadequate. It's one of the reasons so many people are willing to accept the idea that magnetic bracelets and crystal salt lamps can heal dozens of diseases.

Even a years' worth of anatomy and physiology (and do you realize that the entry level nurse, an LVN, hasn't had these classes, chemistry, or microbiology?) is not an adequate preparation to understand how the body works, and yet, we have all these websites passing along awful information that is readily accepted in part because the vocabulary is more easily understood and the websites cater to popular misconceptions.

Our science background in general in this country is terrible. Our critical thinking skills are abysmal. Add to that the emotionalism with which people tend to respond, and it's no wonder we're in a quagmire.

KWombles said...

To your question: do vaccines enter the bloodstream at some point? By injecting IM or SQ, the vaccine should first enter the lymphatic system and antibodies will begin to be created. These antibodies will circulate the bloodstream so that if a person is exposed to the pathogen, the body will recognize it and mount a defense before the pathogen has a chance to create illness. Is it possible that some of the antigens will circulate in the bloodstream before being effectively destroyed by antibodies? I assume so, but I've spent the morning searching my immunology textbook and two books on vaccines for laypeople without getting an answer to that question.

I'm not a doctor or an immunologist, and I respect that my knowledge has limits.

If people are concerned about vaccines and the ingredients, there are numerous good sites and books.

http://www.chop.edu/service/vaccine-education-center/home.html

http://www.virology.ws/

Offit & Bell. Vaccines: What Every Parent Should Know.

Myers & Pineda. Do Vaccines Cause That?! A Guide For Evaluating Safety Concerns.

After having spent 18 months in the online trenches of combating vaccine misinformation, I believe that the focus on vaccines by parents is a red herring and a way to avoid dealing with the very real, here-and-now issues that we face as parents to children on the spectrum. I believe it takes away time, energy and focus on the things that most affect us and our children. It prevents acceptance of our children's disabilities and issues, and it keeps us from attending to the very real issues we do face: what therapies and interventions are best, the use of restraints in school systems, how our children should be educated, what programs are in place for them when they reach adulthood, services and homes for adults on the spectrum who cannot live independently.

I see no choice but to divert some energy and effort to combating the misinformation, but it is NOT how I would prefer to spend my time despite the time I do devote to it.

Perhaps A & P, microbiology and immunology courses should be taught at the high school level, along with critical thinking classes beginning in kindergarten. Maybe that would fix some of the obviously glaring deficiencies in our educational system, but the truth is as long as some of the primary and secondary education teachers are not grounded in critical thinking skills, well, that won't fix it. I never forget that one of the more off-the-deep-end commenters at AoA is a teacher and that at least three of the bloggers are as well (and one of them a science teacher).

People like Mercola, Wakefield, Oz, etc, are good reminders that being a doctor doesn't mean one has a lick of sense, either.

I don't have any easy, fast answers. I have an abundance of questions, though. :-) And fortunately, most of the time, I have enough patience to wade through and try to figure out where people are coming from and why, as well as the willingness to accept that not everyone is going to agree with me. It's human nature, though, to assume that I'm right (who would willingly continue to believe something he knows is factually wrong?) and anyone who thinks differently is wrong. And therein lies one of humanity's problems. :-)

KWombles said...

My last two comments were being written while two other comments, one by AMR and one by Dawn, were being made. I'm going to read those now, as I just noticed them after hitting publish.

KWombles said...

Dawn,

Thanks for that explanation!

AMR,

I think you meant that until we have autism rates for children born after most thimerosal was out of the shots (say after 2003 just to be extra safe).

I think that's another of those red herrings, as well, though. With several studies showing no link between thimerosal and autism, scientists tend to consider that question resolved.

It's one of those questions that those who believe autism is caused by vaccines raise. David Kirby dropped that whole thing when California rates of autism didn't drop despite their earlier withdrawal of thimerosal from vaccines (and that examination did involve children born after the thimerosal was removed). He shifted it to mercury from coal plants, and look, now he's moved on completely to factory farming.

Again, I tend to view this whole matter of pursuing vaccines as the root to all evil (most folks who think autism is caused by vaccines also tend to believe it to be responsible for SIDS, MS, asthma, etc) as a way for many parents to distract themselves. It serves no good purpose. Well, it may serve a good purpose for them, but it doesn't help my children or yours or the adults on the spectrum with inadequate support and services.

And as long as people hammer each other about it, it creates further division, deeper animosity, and plenty of vitriol, but not one iota of community building and support for each other. It's just another way to establish ingroups and outgroups.

It leaves me having to repeat that there are no easy answers. We all have to decide individually how we are going to decide who belongs in our ingroup, how we'll set that barrier. Each of us is going to define that differently, and depending on the need, we may move that line. It's not something I like one bit, because once you've pushed someone to the outgroup you immediately show less compassion, less understanding, and afford them less humanity. That's not okay to me. In fact, it really irks me.

It shouldn't have to be us against them, and I know Kathleen would agree with me, it was our whole point when we started Respect for Infinite Diversity: it's about accepting all humanity as part of our ingroup, even those we emphatically disagree with.

:-)

kathleen said...

I do agree Kim :) It many times is an "us against them" feeling..it turns it in to a no-win situation no matter what. Vaccines have become the red herring..first it was mercury..now it's too many too soon..and I think-how does this help anyone? What purpose is being served? That worries me. It detracts from the things that are so desperately needed-supports, services..acceptance, inclusion..sigh..
You know what might be beneficial in all this as well? It is one thing to list vaccine ingredients-but most people do not understand the ingredients by themselves. Don't understand that they ingest most of these things in larger amounts every day-just by..well..living. That might be an interesting post..say by someone who writes that type of post..(hint hint) hahahaha...;0

Roger Kulp said...

I the neurodiversity movement has made a big mistake,not actively reaching out to those who have autism as a part of complex medical syndromes,be they metabolic, chomosomal,autoimmune/inflammatory,or any combination thereof.ND bloggers and groups like ASAN need to be pushing for healthcare,and education of doctors,as much as they do for hiring,and workplace accomidtion.

Those of us who have both autism, and complex medical syndromes,are ignored.It has only been the antivaxers that have acknowledged that autistics are also physically sick,but they recognize it for a reason based on lies and fraud.I look back on a lifetime of sickness,and one close call/brush with death after another,and think of how much worse if it would be, if I had a parent who only treated me with HBOT and chelation. Hardcore antivax parents are no better than Christian Scientists, for exactly the same reason.I would love to know how many autistic children die,or suffer even further disability because an antivax parent did not properly treat a problem caused by an underlying immune and/or metabolic based problem.This on top of children getting sick,and dying from vaccine preventable diseases.

We need to see the antivaxers for what they are,a dangerous cult group,that as among its core beliefs,a rejection of all scientific causes of disease, including genetics,and germ theory.Who because of their beliefs,and their increasing hostility,and political clout, are becoming a serious threat to both public health,and the country at large.

Hopefully people won't wait until President Palin appoints Sherry Tenpenny as surgeon general,to realize we need to organize a counter movement that is as large or larger.

Clay said...

Just found this elsewhere:

The Dunning–Kruger effect is a cognitive bias in which an unskilled person makes poor decisions and reaches erroneous conclusions, but their incompetence denies them the metacognitive ability to realize their mistakes. The unskilled therefore suffer from illusory superiority, rating their own ability as above average, much higher than it actually is, while the highly skilled underrate their abilities, suffering from illusory inferiority. This leads to the situation in which less competent people rate their own ability higher than more competent people. It also explains why actual competence may weaken self-confidence: because competent individuals falsely assume that others have an equivalent understanding. “Thus, the miscalibration of the incompetent stems from an error about the self, whereas the miscalibration of the highly competent stems from an error about others.”

The Dunning–Kruger effect was put forward by Justin Kruger and David Dunning. Similar notions have been expressed–albeit less scientifically–for some time. Dunning and Kruger themselves quote Charles Darwin (”Ignorance more frequently begets confidence than does knowledge”) and Bertrand Russell (”One of the painful things about our time is that those who feel certainty are stupid, and those with any imagination and understanding are filled with doubt and indecision.”

KWombles said...

Thanks, Clay.

I've actually written about the Dunning-Kruger Effect before. :-)

http://kwomblescountering.blogspot.com/2010/08/social-responsibility-which-is-it-needs.html

http://kwomblescountering.blogspot.com/2010/06/dear-lord-its-knee-deep-over-there-and.html

http://kwomblescountering.blogspot.com/2010/06/media-studies-and-misunderstanding.html

Clay said...

I checked out those links this time, and though you made reference to it twice, and a link to it once, the significance was lost on me, because most people can't be arsed to click on every link provided. What I pasted in there is a pretty succinct explanation of it, I think.

It explains so many things...

Roger Kulp said...

So that's really just a fancy way of saying the antivaxers figuratively have their fingers in their ears,and are screaming "La la la can't hear you." at the top of their lungs.That may have been the case a couple of years ago,but I would argue they have moved on to creating their own reality,and want to live in their own fantasy world where bacteria/ viruses don't cause disease,poor diet,and taking Big Pharma's vaccines does.

KWombles said...

Yes, Clay, the summary of the effect was apropos; on posts dealing with anti-vaccine, pro-woo rhetoric, I could easily call attention to the Dunning-Kruger effect each time.

(You're supposed to click a link if you're unfamiliar with the term! I know, I know, we don't always click every link!)

Clay said...

Musta been busy that day, or sick. Yesterday, I was sick as a dog.