Saturday, August 28, 2010
I consider myself a skeptic (albeit a not-completely 'informed' one, as I've taken a winding road to get here). I was raised in a (very) 'moderate' Christian home...Anglican, where it doesn't really matter what you believe as long as you like the music and continue donating. It didn't do me a whole lot of harm at the time because I was older when I learned about the treatment of the Canada's [aboriginal people](http://www.cbc.ca/canada/story/2008/05/16/f-timeline-residential-schools.html)- I learned to sing, learned the Bible (which is a pretty good start for learning Western literature), and learned that other religions weren't evil (never mind my own). Became an agnostic about 35 years ago, still miss a few things about the church, but can't sit through a sermon without wanting to either jump up and debate or crawl off to a corner and throw up. Despite that, I can still see some good in the 'community' that can form in a moderately religiously forum, so I don't regret that time of my life. I've got autistic triplets, and have been through the whole autism wringer. I am very happy that [the appeal on the autism court ruling was rejected](http://www.reddit.com/r/skeptic/comments/d6jbg/appeals_court_rejects_autism_vaccine_link/)).
Skepticism fails, on some very visceral levels, for those people who need it most. I can't blame a lot of people for being skeptical of 'science' these days with all of the lawsuits against Big Pharma/Advertisers etc. I've seen the difference that anti-depressants can make for some people, I was trapped in my house for 4 months during a pertussis outbreak (I'm vaccine resistant), I'm not 100% sure that Bisphenol A is Satan, but I'll still take vaccination over chelation for my autistic kids any day, because I've still got a basic faith that peer-reviewed studies actually mean something as opposed to someone talking out of their ass. Even when our system of 'peer-reviewed studies' and following the scientific method is screwed up, it's still better than any alternative that we've seen yet. But, it's still not reaching the people who need it most.
We need better science education in our schools, so that people understand the difference between correlation and causation. We need better education on childhood development, so that parents know what to look for in the early years and months. We sure as hell need better information and education (and public friendly publications) on vaccines and what they actually do and don't do. We also need to be taught some basic scientific reasoning so that people don't need to listen to the [most vocal starlet](http://www.jennymccarthybodycount.com/Jenny_McCarthy_Body_Count/Home.html) on the news every day. Our society functions on sound bites, and Simon Baron-Cohen or Peter Szatmari sure don't compare to Jenny McCarthy with her boobs hanging out. My kids are actually pretty lucky, because yeah, they're autistic, but I haven't tried to detox them from mercury or feed them a weird diet or throw them in the water with dolphins (although really, who doesn't want to swim with dolphins).
I don't see this vaccine court decision as much as a failure of the courts as of our society that thrives on sensationalist sound bites. There should be a [Vaccine Court](http://en.wikipedia.org/wiki/Vaccine_court) for people who are harmed by vaccines, but autism just doesn't fall under that category. I feel for the Cedillos, because I've been in that place where I've seen my kids struggling and hurting and would have grabbed on to almost anything to get us all out of there, or at least make someone pay for what they go through every day. I was 'lucky' in that none of my kids would have survived without 'science' (10 week preemies, 1 kid with a rare cancer), so I learned early and often that if every single doctor and second opinion that you get tells you that something is true, you'd better bone up on what studies are all about. Our family has been so lucky. I was also 'lucky' that I managed to go to University, have more than 2 years of post-high school science, and have enough friends who are doctors and researchers to have been exposed enough to science education to have even a vague clue what to believe. I'm hardly priveleged, but I'm heads and tails above a lot of people's education, and those are the people who are being ignored.
The skeptical community fails to get their message across to the people who are making day to day decisions in their own lives. Pointing a finger and laughing at people in crisis because they don't understand the scientific method or peer-reviewed studies isn't helpful to anything, especially the 'cause' of skepticism". I want to live in a world that reason rules, and even more so, I want my kids to live in that world. Finally, even the 'autism community' (which is really thousands of splinter communities) are starting to pay attention to the fact that some of us have been saying for years- vaccines do not cause autism. Skepticism **is** winning in some ways, but it could sure be made more accessible to the mainstream.
The skeptical community needs to step up and promote the things that **do** work. If autism/vaccination is your cause, advocate for increased early intervention to 'catch' autistic kids before they hit the news. Advocate for family support, for adult living plans and communities, for changes to inheritance taxes and 'special living' wills that enable us to advocate for our family members and provide for them. About the only thing that we do know for sure about 'treating' autism is that one-to-one intervention in the early years means a lot in terms of later abilities, and more importantly to governments, later tax-paying abilities. No one can 'solve' my children's struggles, and (even though I'm Canadian), I don't expect Joe and Jane taxpayer to fund the bill for my kids in any way beyond what my taxes cover, and what I pay for directly. I don't expect anyone else to help us, but when the only people who offer when you're in a bad situation are the religious or psycho people...it's damned tempting. When my daughter had cancer a church kindly volunteered two great wigs for her to wear- there sure weren't any secular people offering. (And yes, I took the church's wigs...I wouldn't let an 8 year old go bald to satisfy my philosophical objections).
Don't point and laugh at the people who swallow the antivax garbage, the people who use homeopathy, or the people who still think that (beyond reason) shark cartilage is going to cure cancer. Are they deserving of our scorn? Yeah, probably, but we're the ones who've managed to surmount our education and actually look for answers that are based in what we think of as scientific truth. That doesn't mean that their kids or relatives should be tossed on the trash. Maybe that's Darwinism, but I've met enough of my online cohort to think that it's pretty much usually sour grapes. Give them alternatives, and real things to believe in other than a vague concept of "science is the answer". The scientific/medical community (at least in the U.S.) doesn't really give you a lot to hold on to if you're in crisis and you don't have the money to pay for it.
I've been a bit luckier in Canada, but would it ever be awesome (as a parent of autistic kids) to have someone say - "Vaccines didn't cause it. We don't know for sure what does, but we've got some very good ideas. Here are some scientific principles that have been shown to work that will help your kids live healthier, happier lives. Because we believe in science, and because we really don't want to have your kids be a drain on the taxpayers for the 60 years after they become adults, we're going to put our money behind science and encourage you to pursue these therapies." We *have* that knowledge, but no one ever, ever hears that when their child is diagnosed.
It's not rocket science- it really isn't. Skeptics don't fill the void for religion, or snake-oil salesmen, and as much as we want them those things to disappear, it's not happening quickly enough.
I'm sure that you can tell, I'm not a scientist. I have bothered to research the science around the various conditions that my kids are faced with and in areas that I care about. I am a skeptic, about almost everything. Show me someone that promises a miracle cure and I'll be looking in their pockets to see what they get from it. Promise me some kind of existential answer and I'll laugh in your face. Any 'religion' that I've ever read about or been involved about either has a really powerless God, or one that doesn't give a shit, and I can't really say that 'science' is that far ahead (but I'm hoping).
"Skeptics" could do a lot better at actually trying to make a difference, instead of just pointing fingers. I find a bit of comfort in knowing that since my daughter survived her cancer she's only got a 6% chance of a recurrence, and that the struggles that two of my children are going through at the moment will likely be mostly resolved in a few years, because that's what all of the studies show about autistic people going through puberty say. Neither of those things mean a hell of a lot when you're a parent or a child or a concerned person watching someone that you love go through an ordeal, and that's where 'skepticism' falls down. Churches, snake oil salesmen, starlets, and morons promise at least some support, if not relief, while skeptics just laugh. There often is no actual relief, and a lot of us don't expect any, but the skeptical community could actually get off their ass and do something.
I don't think that a great number of people 'want' to be religious anymore, or even want to go to quacks. Very slowly, in most of our lives, rationality seems to be creeping in. I don't concentrate as much on the 'people losing their faith' demographic any more, because face it, I'm Canadian, and even our fundamentalists hesitate to shove it in anyone's face...Canada sucks at the moment, but we're not going to be taken over by religious morons any time soon. I've had more than a few people trying to shove 'GFCG diets/Chelation/OMG aren't you a horrible person because your kids were vaccinated and no wonder they're autism' crap down my throat, but realistically, it's gone down a lot since the 70s. In my experience at least, with 12 years experience in the 'autism world', people DO want to believe...they want to believe in science, but no one gives them any incentive at all to.
Skepticism/Atheism/Agnosticism should not be a religion, but there **are** things that you can do to make an actual difference aside from commenting online. Run for your school board trustee/superintendent if you really want to make a change. Unless you're in a hugely 'important' electoral district that's going to be contested by money from the big parties, you can help to ensure that the students in your area are getting a real education. And realistically, except in the big money districts, no one gives a shit which gives you a real chance to make a difference.
Volunteer. You really care about the autism/vaccine question? There are organizations in every area that will let you work with autistic or at-risk children (even if you're male, and I am well aware of the appalling discrimination against males in child-centred organizations), where you can make a difference. Let parents (some of whom are the people who can afford the chelation treatments and fund the woo nutbags) see that you're willing to put your time where your mouth is. Pissed off about the encroaching red splot on your state? Work with underprivileged children in your area. Tutor a high school kid who wants to go to college, donate your textbooks to your public library, grow an extra row of vegetables in your garden and donate it to a school breakfast program so that kids don't need to start their school day already hungry before they sit down to learn what an 'hypothesis' is. No one has the time or money to give any extra- we never, ever do. I've worked for non-profits and also (more often) brushed off people who have wanted me to donate, because we're all stretched. I can't think of one time in my life that I've said "great- I have 20 extra hours a week or $200/month, so I'm going to be useful". But I have, on different occasions, and likely you could do the same. And as skeptics, and people who want to be taken seriously because we truly believe that science and rationality are a basis for decision making in our lives and societies, it's time to step up to the plate and offer some real support (and even incomplete answers) to people who are looking so that they don't fall for the bullshit.
I think that skeptics are the one hope that we as the 'human race' have, and I say that as a thinking person, as a parent, and as a parent of disabled kids. I didn't expect kids, didn't particularly want kids, was completely blindsided by the whole disability/cancer thing. You never know what life expects. But again, science came to the fore, because if nothing else, science always surprises us. What we can do is to approach science and skepticism with a sense of 'let's deal with what we have according to the rules that we understand now'.
We have a lot of problems in the world- overpopulation, the whole mess that we've made of the environment, the laughingstock that is anything resembling a space program, the growing polarization between skepticism/science and population/fundamentalism. Skepticism and science can help with all of those, but only if we also understand some of the basic human impulses and needs. Right now, skepticism is not fulfilling those needs, at least according to my experience.
Friday, September 11, 2009
Saturday, April 04, 2009
NTs Are Weird � Blog Archive � An End to the Divide: "Online, there is often a very strong divide between some autistic adults and some parents (I recognize that there are people who are both autistic and parents, and this obviously doesn’t apply to them).
I think I can sum up the divide simply. Autistic adults generally want their rights respected, both in the short-term and in the long-term. Parents want the best possible services and supports for their children.
Neither of these is bad. And these goals aren’t at war with each other."
Monday, March 30, 2009
Friday, March 27, 2009
Where has this guy been all my life? I know what the next book on my list is going to be at the library, but better yet, he keeps his website up to date with the latest news about eating sushi responsibly. I'm in love (with sushi).
Thursday, March 26, 2009
Understanding the world of children with autism - One day soon, in the ED or a pediatrics unit, you likely will care for a child with an autistic spectrum disorder. Here's what you should know to prov
I'm going to print this out and take it to our next ER/hospital visit...it's an excellent guide to autism for nurses, by a nurse, on how they can make hospital stays easier for people on the spectrum.