It’s Time For Vaccine Talk Detox
December 26, 2008 by Kristina Chew, PhD
Filed under Health
Seems a pity that, on seeing the words “top 10 unfounded health scares,” the first thing I thought about was……….vaccines and autism.
Many speak of a “debate” about an alleged vaccine-autism link and that there’s a “controversy” brewing here, but it’s a false controversy. 2008 saw the publication of more studies refuting a link, and yet there’s been a call for more studies—-among the $1 billion in research initiatives noted in the Strategic Plan of the IACC is an item about the “different health outcomes in vaccinated, unvaccinated and alternatively-vaccinated groups”—so it’s not as if this particular topic is going to go away.
Sometimes, one starts to wonder, will this particular topic ever go away? How many studies will it take to convince those who believe so very much that there is a link, that there really isn’t one?
Of the 3,393 or so posts I’ve written here, hundreds and hundreds and hundreds have been on vaccines. In the course of writing those posts, and reading about vaccines, about autism, about vaccines and autism, and about what people think about vaccines and autism and about why people think there’s a connection between their child becoming autistic and vaccines, the one thing I’ve mostly been left with is a sense of need—-a sense of needing to know—-of searching for the one answer about why and how this happened—-of needing to do the right thing. In an age when every single step of child rearing, from pre-conception to pregnancy, from labor to birth, from infancy to the first birthday to toddlerhood, from preschool to elementary school to hitting the double digits (10 years old!) to (gasp) adolescence, is not only scrutinized—-is written about in books, magazines, and websites galore, parents seem more and more haunted by the need to get it right.
And when one’s child is disabled, that need seems only to get compounded, as parents (myself included) seek “the best,” or the “most appropriate,” or the “highest quality” services, teachers, therapists, and programs for their child. As much as you know—as I know—that you and I did everything we should and could have done for our child, still that worry nags and lingers, that maybe you and I could have done something different. On the one hand, I’ve gotten pretty good at ignoring stares from strangers; on the other hand, there’s always an unspoken fear that maybe I am doing something wrong; that I’m a bad parent. Why else did those “autism is just another excuse for rotten parenting of rotten kids” remarks by Michael Savage and Denis Leary earlier this year strike such a note earlier this year?
What if we really are such bad parents; what if the likes of Savage and Leary are right?
And it’s that voice-in-the-back-one one’s mind, it’s that twinge, that “maybe” that has something to do with why, scientific evidence to the contrary, the notion that vaccines are somehow linked to autism just won’t die.
So here’s a possible resolution for the new year: How can we detox ourselves from talking about the hypothetical vaccine-autism “link”?
“So here’s a possible resolution for the new year: How can we detox ourselves from talking about the hypothetical vaccine-autism “link”?”
I agree, we need to move beyond this debate. Over the past year, I have started to ignore stories about vaccines and autism, ignored blogs about vaccines and autism and basically I am completely indifferent to it now because there are bigger issues affecting the lives of autistic people. There will always be a small cadre of folks who believe in conspiracies, who refuse to use reason and seek out the latest “information” to reinforce whatever it is that they believe in. For me, it has been good to make a public statement that further discussion about vaccines and autism, no matter what side of the debate one is on, is a waste of time and harms moving the conversation forward on the “real” issues affecting autistic lives and to continue to expend energy and resources on this debate is actually harmful to autistic people (both sides).
I’m in agreement with you, CS—–I suspect I’ll still be mentioning the vaccine issue, but I want to do so in the context of how it’s diverted — monopolized, even—energy away from what we really need to be talking about. Certainly there’s plenty of websites and individuals out there who talk about this issue enough, but let them talk to themselves.
Orac provides yet more reasons for why it’s time to move on from the vaccine topic.
CS said,
that further discussion about vaccines and autism, no matter what side of the debate one is on, is a waste of time and harms moving the conversation forward on the “real” issues affecting autistic lives and to continue to expend energy and resources on this debate is actually harmful to autistic people (both sides).
(Bold is my emphasis.)
I agree.
I believe that at some point the focus by debunkers was very useful as a public service, but the continued focus, except in limited doses, runs the risk of being as much a distraction as that being critiqued.
I guess I’ve settled on the following approach. We simply don’t talk about vaccines at all on our blog. I’ve even set up Wordpress to put all comments into moderation that contain the word ‘vaccine’.
The way I look at it, I’m not an epidemiologist or a doctor or a researcher or whatever. I can only go with what I believe is ‘right’ based on what I have the capacity to figure out, and I think I’ve done that. But even though all this is talked about in religious-sounding language, science isn’t about belief in that sense, but that’s about as much as I can do with the limits of my knowledge and expertise. I’m not about to equate my opinion with that of a trained epidemiologist.
We’ve read the studies and made decisions on what we think is appropriate for our family. We’ve decided to let the experts continue this discussion, even though I too wish it would stop. In any case, we found that participating in all these conversations about vaccines was taking time away from what we needed to be doing for our son. So we’ve just moved on.
I’ve found that much of the energy and passion devoted to all this arises from fear and the dread that comes from hearing all the negative stories about autism. When parents first ‘get the diagnosis’, their automatic reaction most of the time is despair. I admit that ours was too. My sense is that the more of us who decide to be positive and tell our own stories about how much our children have taught us and blessed us with, the more that will change.
Simply put, people want hope. And the people giving it right now are usually those who deal in false hope. People e-mail me and thank us for being positive and showing them that there parents out there doing pretty well and discovering all the gifts and joys that come with every turn and challenge we encounter. Usually these are people whose children were just diagnosed or are about to be.
They want to hear that it’s OK to be scared and depressed and to grieve. They want to know it gets better. They want somebody to tell them they’re not crazy and that they can do it. They want people to be honest with them. They want to learn practical ways to address the challenges they and their children face. They want people to cheer them on. They want to know how to do whatever they have to do in order to help their children realize their full potential.
I think if as bloggers we can focus our efforts on those things, we’ll have contributed something very important to the community of parents and children who are trying to do the best they can, just like we are. And by doing this and keeping a positive attitude, we will learn how to set the bar high for our children and help them reach it. And we will also create a more accepting culture that will improve other issues like civil rights and services for autistic adults.
In the absence of most of our children being able to speak for themselves, that space is instead filled by our voices. It can be filled with fear and negativity and endless arguing, or we can fill it with hope and possibility. We’re sorely lacking in the latter.
There will still be plenty of smart people staying on top of vaccine issues. I’m content to leave that to them. I think the rest of us need to start addressing everything else. We all know that good resources for parents, children, and adults are woefully lacking. And I think 2009 would make a great time to get off our blogging butts and change that.
@Tim,
am hoping many more follow your example!
Tim,
Wow. Thank you for that. Well-said indeed.
xo
karen
What CS said.
The discourse ought to be about what really matters: the educational, social, and developmental needs of our kids, and the “big 5″ issues I keep coming back to that adults on the spectrum face (which should be of concern *now* to parents of autistic children, because they will be the adults of the next decade):
1. Housing and household management
2. Postsecondary education and vocational training (including literacy and access to alternative/augmentative communication (AAC) devices, where not already established before adulthood)
3. Employment
4. Access to competent healthcare and communication about healthcare on a par with nonautistic people
5. Living in the community as consumer and citizen
What Tim said, too!
In particular,
“I’ve found that much of the energy and passion devoted to all this arises from fear and the dread that comes from hearing all the negative stories about autism. When parents first ‘get the diagnosis’, their automatic reaction most of the time is despair. I admit that ours was too. My sense is that the more of us who decide to be positive and tell our own stories about how much our children have taught us and blessed us with, the more that will change.”
To that end, I once sent our family’s story to Autism Speaks. Back in 2006, they solicited input from parents, to put on a section of their website titled “In Our Own Words”. Here is what I sent them — but it certainly didn’t seem to be what they were looking for… They never posted it.
=====
My name is Phil Schwarz. I’m the proud father of Jeremy, 15, who is autistic, and Rachel, 17, who is in the broader phenotype. I am an AS adult myself, married to Susan, my loving spouse, who is the family’s token non-autistic
.
I work as a software developer, and serve on the boards of the Asperger’s Association of New England and the Massachusetts chapter of the Autism Society of America. I am also a member of Advocates for Families with Autism of Massachusetts, and we are family members of Autism Network International.
Our involvement in the autism community began with Jeremy’s atypical development as a toddler, in 1992. When we first suspected Jeremy might be autistic, we knew very little about autism, and much of what we thought we knew was wrong. We were fortunate to have access to clinicians, and later services, among the best in the country, among them Margaret Bauman, MD, and the preschool program of the May Center.
But it was contact with autistic adults, and their allies among families with autistic children, that really opened our eyes to what the future might hold. Two seminal essays convey some of the essence of the most important things we learned: Oliver Sacks’s biographical essay about Temple Grandin, “An Anthropologist on Mars”, and Jim Sinclair’s landmark essay “Don’t Mourn For Us”. We learned that autism was *not* degenerative, despite seeming regression in toddlerhood; that institutionalization was *not* a given; that there is no “ticking clock” after which autistic people become incapable of acquiring skills or developing complexity of thought and communication; that indeed establishing clear means for an autistic child (or adult!) to *reliably* communicate needs and desires — whether through speech, signing, keyboarding, whatever — was Job 1, and the best insurance against the development of maladaptive behavior.
We didn’t even know that there were high-functioning forms of autism when we began. In the course of our reading, we discovered that *my* childhood development — and even my adult adaptations, habits, and needs — fit the profile of AS. So many seemingly unrelated “puzzle pieces” about my own development all of a sudden fit into a coherent frame and began making sense. (And when I “came out” and informed my father of the diagnosis, he responded with information that filled in the genetic lineage further: he was hyperlexic as a child (at age 3, his mother had him read her the newspaper in the kitchen while she cooked), and his father was an arithmetic savant.) My diagnosis was a relief, a homecoming, and a call to further action.
Jeremy attended the May Center’s ABA-based preschool program. This was ABA the way it should be implemented: long on flexibility and recognition and *leveraging* of the child’s special interests and innate learning styles, short on dogma; oriented towards *teaching usable skills* rather than towards making the child “indistinguishable from peers”. We did not teach “typical” play skills that were meaningless and uninteresting to him. We focused on constructing activities around things he liked to do, that served to exercise and develop skills he was ready to develop, such as executive function. We do not consider it a tragedy that he did not do many of the things a “typical” happy childhood is supposed to have. He has developed quite happily along his own trajectory, and the important thing is for him to reach adulthood with as much as he can of the skills he will need to live as independently as he can.
After good and bad experiences in an elementary school inclusion program, and in a middle school team geared to kids with language based LDs, Jeremy has started a high school program geared to autistic spectrum kids. For the first time since preschool, he is among kids who operate at *his* speed socially, and it is showing. After years of disinterest in playdates, he is asking to get together with peers and participating in extracurricular activities. Our goal remains to transition him from high school into community college where he can obtain the postsecondary education that will allow him to leverage his greatest love, computers, into a career that earns him a living.
Rachel’s development has been and continues to be a thing of joy and beauty. She is *so* much savvier socially, at 17, than I was (I think the extra X chromosome helps
), and she is going to be one terrific ally to autistic people, and champion of autistic people’s *rights*, as she grows into adulthood. She has a teen’s Renaissance-wide array of intellectual interests, and is gravitating towards doing something involving language and education. (Though she says that if she discovers she can make a living developing storylines for Marvel Comics, she’ll drop her day job in a flash 
.)
From 14 years of involvement in the autism community, as both a parent and a self-advocate, I think the most important piece of advice I can give to parents is to *listen to what the adults on the spectrum are saying* about how to respond to autism. That path — rather than a frenetic search for “cures” or a declaration of “war on autism” — has led us, quietly and slowly but surely, to maximal outcomes and expanding horizons.
And the most important piece of advice I can give to Autism Speaks and NAAR, is to engage the autistic self-advocacy community in serious discourse about the best ways to respond to autism — about what the aims and goals of autism research should be; about how to focus all the energy mobilized for “cures” into overcoming specific handicaps rather than waging war on autism per se; and about how to recognize when change in the individual is warranted, and when change in the society is warranted. I and others in the self-advocacy community are open to working with you in that regard. We are a largely untapped resource. It’s time to repair the disconnect between us.
=====
But, as Paul Simon would say, “my words like silent raindrops fell / and echoed in the wells of silence”…
I think that if our family stories of small steps and slow steady progress and positive angles don’t get published by the big autism organizations (because they puncture the bubble of their marketing model, based on FUD (fear, uncertainty, and doubt), pity, and urgency-to-do-something-before-it’s-too-late), we need to redouble our efforts to tell them here in the blogosphere and through the auspices of smaller autism organizations like AutCom that focus not on tragedy and pity and causation and “cures” but on the tangible daily needs of autistic kids and adults and the slow and steady steps necessary to quietly and effectively meet those needs.
I totally agree that the debate has been a distraction from what we need to learn. Having said that I should note that the mantra “It is not vaccines cuts off a number of threads that need to be pulled at to unravel the autism enigma.
Frankly, I would *love* to stop talking about vaccines…but if the debunkers stop talking about vaccines then the only opinions the public hears on the subject are the conspiracy theorists like Jenny McCarthy. And the media seems to like giving her and the people like her air time because she makes for dramatic film.
If we “move on” then by sheer repetition the conspiracy theorists will win people over. Because their message will be heard OVER and OVER and OVER…with no debunking.
Why does this matter? Because public opinion affects where public research and care funding goes, affects public health via vaccination rates, and affects public perception of ALL parents of autistic children. If the hysterics win public opinion over the weight of science, funding will be going to the wrong things (or have unacceptable strings attached), vaccination rates will plummet (we are already seeing that start), and all of us parents of these children who are vaccinating them and not using biomedical “treatments” will be widely viewed as neglecting or mistreating our children.
That is why we have to continue to carry the banner of science until the general perception of Jenny McCarthy becomes that she and others like her are hysterical conspiracy theorists. That battle is not won yet.
@Nancy, that’s why I’ve continued to post and write about this topic, despite what I’ve come to think is the increasing irrelevance of the topic of vaccines to autism. I’ve found it essential to stay informed of what’s being said and thought by those who think vaccines can somehow be linked to autism, and to try to comment on those ideas in ways that put forward the issues that I think are the most important.
@Kristina,
The relevance of the topic is not with autism, it is with blindness.
We have known since Dr Rosemary Waring did her tylenol experiments that the sulfur amino acid chemistry in autistics does not work as well as the normal population. Autistics are statistical outliers in how long it takes to process tylenol through their systems. In spite of that and other medical differences between autistics and the rest of the population, there is no medical test for autism. Oh wait, the same chemistry that is used on tylenol is also part of the body’s mercury defenses. Time for the autistic look away.
With full acceptance that the MMR does not cause autism, there was one thing about it that should have been noted. Measles viruses were found in the spinal fluid and in the gut flora of the autistic population. The conclusion: There is leakage through the blood brain barrier and the blood gut barrier. There was further evidence of this in the urine samples of the autistic population. But mercury attacks these barriers too. Time for the autistic look away.
Low levels of glutathione (part of the sulphur amino acid chemistry) are found in autistic children (as well as numerous other brain issues). How sad, mercury causes low levels of glutathione too. Can’t look there either. Did you know mercury causes blindness?
If you are in medicine and you find anything that takes you too close to the minefield of autism/vaccine relationship, you can’t look there. To do so is to risk vitriolic ostracism by the rest of the medical community.
@Ed, Are you referring to Wakefield’s study?—-I think those findings are note quite what people make them out to be.
@Phil – Amen to everything you said. Wish I could say it that well.
@Nancy, et al – I think the main problem is that wherever there is fear and panic, things inevitably start being discussed in religious language and metaphor. Then those who hold opposing views get labeled somewhere between ‘those people’ and ‘enemies’. Then those with opposing views respond with equal passion. And from there it’s game on in a spiral that has no end.
As a veteran of some ugly denominational wars, I learned two principles that simultaneously brought me great sadness and quite a bit of relief: you can’t throw facts at religious arguments and expect anything to happen, and throwing more bodies into the fray does nothing except make the pile bigger. Figuring this out freed me to address matters I could do something about, and do a lot more good than I was doing when I was in that pile.
Given that I’ve heard something similar to “we are in a battle for the souls of parents” from multiple sides of this thing, I know it’s time – at least for me – to walk away and try a different path. I’ve been there and done that and had my life threatened (in a denominational issue and not anything to do with autism) and have the t-shirt.
People quote studies, news reports, and medical facts like Bible verses to support their arguments. Every side evangelizes and measures the results by converts. I’ve heard the same stuff regurgitated over and over again like everybody went through their own brand of catechism.
This isn’t an indictment of anyone; we are all very passionate about this and have devoted our lives to it because our families and our children and other people’s families and children depend on us to. If all we had was apathy, I’d be really scared. Anger really is just a sign of how much someone cares about something, and I respect that a lot.
But we are just spinning our wheels – all of us. My point is that this is never going to end if we all stay on the path we’re on. There are plenty of well-meaning people who vaccinate and plenty of well-meaning people who don’t.
One common trait of both and everyone in between is that there are a lot of people who are scared, confused, exhausted, panicked, financially wiped out, unable to access proper services, paralyzed by the zillion things they have to do, and unable to do more than crawl up from the floor and put out the first fire raging in front of them. Somebody has got to start doing something more to help them.
We will never be able to unite everybody, but we can set a vision to address things common to all of us and find a way for us to move forward even while the vaccine debate rages on. Whether it’s teaching parents how to make inexpensive learning activities to use at home when they can’t afford an occupational therapist or giving practical advice on how to prepare for IEP meetings or the bazillion other things like that, these are issues we all face regardless of whether we vaccinate our kids or not.
My frustration is that hardly anyone seems to be doing this with anything more than half-hearted, piecemeal effort, which results in nobody being able to find anything they need. If I had a dollar for every time somebody said, “I went on the Internet to try to learn more about X (speech therapy, shoebox tasks, whatever) and all I found was the same crap over and over again,” I’d be near able to quit my job.
If you search for autism and related subjects on Google, most of the top results are about vaccines and depressing news and fear and enough other stuff to crush the spirit of parents who are just trying to help their kids the best way they can. In the absence of useful information, they will often take the easiest-sounding path because standing still, staring at the wall completely confused about what to do next, and remaining paralyzed just is not an option when your child is banging their head into a wall or unable to communicate their basic needs.
I want us to be able to give them more options and more techniques and more examples of how parents are learning and persevering and thriving and staying positive and hopeful and how their children are overcoming challenges and discovering their gifts and thriving themselves whether in spite of or because of the obstacles and opportunities they face. The means addressing the needs of both parents and everyone on the spectrum regardless of age because all of these issues are intertwined.
This will require a lot of resources devoted to a lot of issues and a lot of people will have to decide to step away from vaccines and whatever else dominating the news to work on it. I trust other people can capably continue this debate without my miniscule contributions because I know whatever I can add to it is nothing more than throwing another body into the scrum. I think I have a lot more to offer – to whatever that actually amounts to – in other areas.
I know the vaccine debate is important, and I don’t mean to come across as diminishing it because I’m not intending to, but there are plenty of very important things that are being neglected or ignored. Something has to be done about them. A couple of friends of mine and I are working on some ideas. I hope others will too, and maybe we can all put our heads together and break some new ground.
Hopefully I’m making enough sense to justify my long-windedness here. Thanks for reading.
@Kristina,
No,
There were others who found measles viruses in the gut and in the spinal fluid. This is what caused the MMR controversy.
So long as ‘vaccines-and-autism’ is a profitable commodity in the media, it will be sold. Not adding to the fray among the enlightened is admirable; potentially prevents mushrooming of these ideas among even more of the innocent.
Orac, while brilliant in his analysis of research, is not readily available to the public. He beat-up Parade Magazine recently, but the general population could not read one of his posts and gain understanding.
“I’ve found that much of the energy and passion devoted to all this arises from fear and the dread that comes from hearing all the negative stories about autism. When parents first ‘get the diagnosis’, their automatic reaction most of the time is despair.”
The parents of persons with Down syndrome are making a concerted effort to be sure parents receive more than the standard negative prognosis with their child’s diagnosis. This plan seems to be effective for reducing the number of abortions after pre-natal diagnosis of ds.
Vaccines-and-autism remain a debate so long as persons of differing opinions continue to make a case to the other side.
@Kristina,
The point of my post is that there are threads that will never be pulled in by medicine in the pursuit of autism because they are too close to the vaccine thread.
@Barbara – Great point about the DS groups. They are light years out front on this and have numerous groups serving as great models for what we should be doing.
Orac makes for a good example. His research is in a higher plane of expertise than I could ever hope of living in. I don’t think I’d have a prayer of agreeing with it or disputing it with anything resembling an informed opinion.
People like Orac need to be doing what they are doing because people with those sorts of skills need to be conducting and vetting the research. The audience I’m more concerned about is the average parent who has an IEP meeting in two weeks that they can’t find time to prepare for because he/she is having to stalk their kid all day to make sure he doesn’t eat glass or his own skin while occasionally running by the kitchen table and noticing this pile of medical and therapy bills they can’t pay for. I’d say that might sound extreme except I know parents dealing with this.
There are many, many parents who forgo sleep at night to do research while their kids are in bed. (I’ve been one of them.) Every minute they spend rummaging around Google hoping to find something other than disorganized resources or outright crap are minutes they’re not sleeping or trying to regroup from another rough day. They need clear, organized, and direct resources, and as best I can tell, that doesn’t exist.
Those of us who’ve walked some miles on this path and have figured out ways to make good progress and enjoy the journey of discovery we’re on with our kids have a lot to share with those who feel lost and marooned out there. On top of that, we have a heckuva lot to learn from each other. God knows I have a LOT LOT LOT to learn.
Even if you feel determined to focus much of your time on vaccines and related topics, I hope everyone can commit to some time every week to create a helpful resource on some other topic for other parents. Personally, my one and only new resolution for 2009 is to do whatever is within my ability to do to create as many easily-accessible resources as I possibly can.
So many people have taught my wife and I so much that we want to pass on what we’ve learned. If we can all invest at least some time in doing this, I think this is how we move forward.
There is NO doubt in our minds that our 4 year old son was seriously affected by his MMR vaccine. I would like to see proof that the vaccines are NOT harmful or even effective.
Tim, we seem to agree. “They [parents] need clear, organized, and direct resources, and as best I can tell, that doesn’t exist.”
His Royal Insolence lives in the ivory tower and bashes those who dare to share with the masses. Isn’t it typical of the purveyors of scientific medicine to hold it close to the vest? How do non-scientists discern the charlatan from the healer?
Regarding research that you will use to make decisions for your family, I recommend you make a conscious decision as to who you will trust for information. Or at least to question sources such as news media, who are poor sources for medical information in my opinion. How helpful is Orac to you if you cannot understand what he writes? I submit he could help more people if he would work with a good editor.
I appreciate very much what the evidence based science writers like Orac are doing for my son, exposing the quackery perpetrated on autistic children, like one of his latest posts, http://scienceblogs.com/insolence/2008/12/the_price_of_antivaccination_fanaticism.php
His scientific knowledge combined with his superior critical thinking skills and his intimate knowledge of how to conduct clinical trials is exactly what our children need to avoid the quackery industry that has built up surrounding autism medical treatment. He doesn’t bash anyone who shares evidence based medicine with “the masses”, he deconstructs the non-evidence based pseudoscience of the DAN! practitioners, he is the one sharing evidence “with the masses”, he isn’t holding anything “close to the vest”.
The science he discusses is very complicated, even for those of us who have medical degrees but are not in the “ivory tower”. Orac and the other science bloggers have attempted to make the science accessible to laymen, to explain the pseudoscience of the DAN! protocol. I am thankful for them and their efforts.
If I were to analyze the comments for this post….while some agreement between individuals is expressed, several statements prompted a defense from the opposite perspective. This behavior works to keep the ‘debate’ alive.
I really like Kristina’s “let them talk to themselves” – which is exactly what I said Orac does. To which storkdoc immediately came to his defense.
Nancy Nally makes a cogent prediction for the consequences of absenting ourselves from the vaccine-as-cause debate. But “to carry the banner of science” cannot be left to Orac alone. The power of media-(profit)-driven debate is too overpowering. Leading the charge is an attractive woman who has taken on a warrior mantle.
From my first comment: “Orac, while brilliant in his analysis of research, is not readily available to the public.”
Then Ed: “His research is in a higher plane of expertise than I could ever hope of living in.” I continued on Orac in my second comment – meaning he is not an adequate resource (of information) to parents. [I used emotionally-triggered verbage purposely. It is so easy to be like news media.]
Storkdok’s defense of Orac is weak since she is a physician, and likely understands much more of Orac’s rants than anyone else here.
For all his good intentions, most parents of children with autism cannot benefit from Orac’s blog.
Orac is not always so respectful, and he admits it. I think he is verbose. I have a PhD and I rarely make it to the end of one his posts.
If Orac is held up as a front-line defender against vaccine-as-cause, our warrior will lose the media battle and the public debate on this issue.
“Orac is not always so respectful, and he admits it. I think he is verbose. I have a PhD and I rarely make it to the end of one his posts. ”
Good observation. I too have a PhD and find little of interest in his arguments and rarely finish reading one of his posts.
While criticism takes little talent, speaking of myself here, I do think Orac does serve some purpose. However, I don’t think anyone should falsely believe Orac gives a rat’s ass about autistic outcomes.
Barbara and others,
I’ve been pondering this over the last few days, and I think I understand better what I was trying to get at imperfectly before. (Not saying this is perfect or anything, however.)
There seems to be a widely-held sense that because the vaccine issue is so critical – regardless of your stand on it – that we can’t not participate in it. It’s turned into this thing where it’s seen as large armies facing each other with the belief that the army with the biggest numbers will win. I think this is a wrong-headed belief.
I think what this issue calls for is not more voices but clearer, more accessible voices. There are times when a few very clear, very easy-to-understand voices are infinitely better than a chorus of everyone talking over and past each other, and I think this is one of those times.
What would be helpful in my opinion is getting the really hardcore experts, medical geeks, etc. to do the kind of analysis that needs to be done at that level, and then hand that down to people who know enough to understand what they are saying but start wording it in language more average people can understand, and then those folks hand it off to people who are more the communications experts who can then share all of this with the public in a format accessible to all. This isn’t being done now as instead we have a few thousand bloggers essentially doing their own thing with little or no concerted effort. There are exceptions, but in my opinion, there aren’t many. What’s a parent to do when they are faced with thousands of messages bombarding them when they’re already confused as it is?
I think those concerned about this subject should all get together and organize the process. This would allow fewer people to be much more effective than the big, cacophonous scrum we have now.
The bottom line for me is that we need more people concentrating on what to do to help with the practical, day-to-day needs of parents, sharing resources, providing positive support, and so on, all of which is close to being completely neglected in the rush to fight the vaccine war. If creating a better process for sharing medical information with families gets people to feel more willing to trust in that process and dedicate themselves to everything else we’re not doing, I’m all for it.
In my opinion, for whatever it’s worth, we’ve allowed ourselves to devolve into near chaos. There’s a timeless communication axiom that if someone doesn’t understand what you are saying, saying the same thing again except much louder doesn’t achieve anything. Getting clearer and better organized does.
I already know there are a whole lot of people more capable than I am of discussing the vaccine issue intelligently. I’m not talking about ‘moving on’ as meaning ‘ignore the issue’. I’m saying that some – if not many – of us need to focus our energy on everything else that’s getting neglected, because ultimately our children are going to be less and less able to get the therapies, services, rights, self-confidence, and everything else they need if we don’t.
When it comes to those things that parents everywhere have to fight for every day, much, much more needs to be done to help. And as the saying goes, if we don’t do it, who will?
The sentiment that I see is “Why don’t they get it? Vaccines and autism are not related.” Allow me to tell you why.
Years ago, numerous parents had observed autistic regression occurring after their children received their vaccination. Each of these observations was met with comments like, It is only anecdotal evidence; Post Hoc Ergo Propter Hoc; We’re the experts; You do not understand. Okay, we the parents are not stupid. We understand that just because the regression occurred right after vaccination does not mean that vaccines had to cause the autism regression. While it means that vaccines cannot be found guilty, it does not mean that vaccines must be innocent. Also, there have been so many cases of autism regression after vaccination that writing it off as anectdotal evidence sounds patronizing. Even worse, it sounds like it is more important to preserve the vaccine program than find out what is causing the devastating rise in autism cases.
The rise in autism is very uncomfortable for the pro-vaxers. Vaccines fit the geography and timing of the rise in autism like nothing else does. The CDC swore that the rate of autism had remained constant (1/2500) up until they were faced with the California School System statistics. In Feb, 2007, the CDC came out publicly that there really is an autism epidemic.
But if there is an epidemic then it has to have a cause and the pro-vax and the medical community is at a loss to say what that could possibly be. The idea that there is no epidemic is put out like it is a proven fact. As one of many who has seen the numbers change in our neighborhoods, I find it astonishing that this idea has reached the level of religious dogma. It is an unproven theory with lots of evidence to the contrary, but because it ostensibly fills the void, pro-vaxers and the medical community still hold fast to it.
The experiment to see if there is a relationship between vaccines and autism is to determine the number of cases among the vaccinated population against the unvaccinated population. This experiment has never been done. When this is mentioned, it is met with scorn by the pro-vax community.
The patronizing, the scorn, the leave this to the experts attitude leaves me with the idea that the vaccine program is more important than whether my children or my grandchildren become autistic. I cannot accept that idea and that is why I don’t get it.
It is cited often, but there have been large-scale studies of non-vaccinated children, and the Amish. The more recent studies of the Amish have found seizure disorders, autism, and other disorders that critics of vaccines tried to claim did not exist. (I have a number of these newer studies in my research filing cabinet, so I would need to physically retrieve the articles.)
The largest unvaccinated population study was done in Japan. You cannot do a study like this in America: an entire national health care ward (about 500K residents) was unvaccinated to see what would happen. Can’t imagine telling an entire state or city “Sorry, no vaccines for a time so we can see what happens.” But, they did.
From Science Daily, 2005:
Japanese in Kohoku Ward (population 300,000), Yokohama, Japan, continued to see autism in young unvaccinated children at an increasing rate, after *stopping* MMR vaccination of children in that ward. If anything, stopping MMR is associated with the problem becoming
worse. It certainly didn’t make it any better. As the authors point out, if the thimerosal/MMR vaccination hypothesis as primary cause of
autism has anything to it, this study result is impossible. These people did what the Chicago docs say they did, except on an entire
population whose children could ALL be tracked. The results are (moreover) reported, analyzed statistically, and published in a peer-reviewed journal.
J Child Psychol Psychiatry. 2005 Jun;46(6):572-9. No effect of MMR withdrawal on the incidence of autism: a total population study. Honda H, Shimizu Y, Rutter M.
Yep, a total population withdrawal… and not much changed.
Really none of my business, but since you asked . . . .
I’d simply make the (entirely justified) assumption that anyone, anywhere who invokes the “vaccines = autism” meme without solid scientific proof is a crackpot — and treat them accordingly.
Okay: Jenny McC = Crackpot
GR = Crackpot
Safeminds = Crackpot
so, anyway, you get the idea. Remember the saw about wrestling with a pig, and steer clear. Well, that’s my unsolicited advice. (Crawls back into his hole.)
@CS
No MMR is not the study that I am asking to see done. No vaccines is. No MMR does not mean no vaccines.
@Morgan,
There are good reasons to suspect that autism and vaccines are related. I am asking that the aforementioned study is done. The medical community had the money to sponsor autistic phrenology and that was not thought to be a waste. So why is this a problem?
@Ed
The Japanese protocol is quite different, adhering to minimal WHO recommendations. It is not only possible, but likely that many of the Japanese children had no vaccines at all until age 5 or 6. I would need the complete statistical breakdown, which not every journal publishes. (You usually get about 20-typed pages max into a journal, offering to provide more than summary data to other researchers on request. I know most of my data are never in papers or presentations.)
If anyone else knows of Japanese norms, I think that would clarify the matter. I do know incomplete (unpublished) studies in places with rare vaccination, including rural China, are finding autism.
However, do not think that this means I am claiming no environmental link or trigger. China’s interior is heavily polluted. Also, high levels of mercury and lead have been found in fisheries near Japan. I can’t imagine lead is good for anyone, in any amount.
Many of the illegal immigrants in the southern Kern County region of California have autistic children. These children were not vaccinated, for somewhat obvious reasons. However, the mothers did work in the heavy-metal rich soil (we have a selenium problem in the Valley, made famous be deformed birds in Kesterson Wildlife Refuge). Also, being farm workers, the mothers were exposed to who knows how many chemicals…
So, while the mothers didn’t vaccinate in the various small towns around Bakersfield, there might very well be an external factor. There is also a noted cancer cluster in McFarlane, north of Bakersfield.
Also, you cannot rely on California’s public school reporting, which I have studied and analyzed at length. California, Minnesota, and Oregon use very “flexible” criteria — allowing schools to report autism without an official clinical diagnosis. I’ve lived, taught, and studied in both Calif. and Minn., so I am quite aware of how the numbers are created / generated.
One of my fellowship projects was to analyze definitional (diagnostic) differences among states, educational systems, clinicians, and researchers. Researchers have the strictest “definition” of autism, while private clinicians have the most flexible.
In California schools, classifications of mental retardation have declined by exactly the same rate autism has increased in the state (I might have this chart on my Web site… not sure). That’s more than coincidence.
Science is evolving, thankfully. Someday, I hope we locate precise markers so “definitions” and “checklists” aren’t how we define autism. Right now, all counts are subjective — even the numbers I must work with daily. They simply can’t be called precise, just “good enough for now.”
Oh, and why studies cannot be done:
No IRB (Institutional Review Board) would ever, ever allow a researcher to study a group of children being placed at risk. You might not agree there is a risk to forgoing vaccines, but I’m willing to bet 100 percent of IRBs would consider it a risk.
No matter how great a scholar you are, you can’t do anything without IRB approval. If you are going for an NIH grant, you need both your institution’s IRB and the NIH committee approval.
This is the same reason we cannot study chelation, various diets, etc. As long as one member of an IRB objects, the study cannot go forward. I’ve had two studies canceled after IRB rejection. That’s life in research. You redesign the study or develop a new study.
It is *never* as simple as: I want to study this, so let me.
The days of testing on patients, prisoners, and the poor are gone — thankfully. Anytime you want to study children, institutions are now incredibly protective.
I can’t even find mention of actual phrenology within the last 50 years. “The New Phrenology” (fMRI) is mentioned in dozens of online articles, but to compare fMRI to phrenology is ignorance in the extreme.
On the other hand, feeling bumps of the head (how 19th Century England) is not going to pose a physical threat. I suppose an IRB would approve such a low-risk study.
“Storkdok’s defense of Orac is weak since she is a physician, and likely understands much more of Orac’s rants than anyone else here.”
“For all his good intentions, most parents of children with autism cannot benefit from Orac’s blog.
Orac is not always so respectful, and he admits it. I think he is verbose. I have a PhD and I rarely make it to the end of one his posts.
If Orac is held up as a front-line defender against vaccine-as-cause, our warrior will lose the media battle and the public debate on this issue.”
I find this completely illogical. How can a “defense” be “weak” because I am a physician? That makes no sense.
I disagree that parent’s can’t benefit from Orac’s blogs and the other evidence-based science bloggers. If parents think they understand the science so well on The Age of Autism and other antivaccine blogs, why can’t they understand Orac’s blogs? Do you think that his more accurate evidence-based science blogging is too difficult to understand? Then that is not his fault, it just means that this is indeed a complex issue, and to more fully understand it takes more knowledge, a higher science base, than high school or college level science. A PhD in a different scientific area may not give the base of knowledge to understand what he talks about. You are most likely an expert in your field, but that doesn’t carry over to other areas all the time. It doesn’t mean you are not intelligent.
I think every one can benefit from accurate evidence-based science.
I agree Orac is not respectful, he admits that up front. So what? At least he admits it. Have the pseudoscience defenders been respectful? Is it respectful to put a target on physicians and scientists who don’t agree with the defenders of pseudoscience? So much so that Dr. Offit needs an FBI escort for protection? I find what I read on the non-evidence based blogs to be far worse than any disrespect Orac has ever shown.
My defense is of science-based medicine, and Orac is one of many who blog on science-based medicine. None of them are “media savvy”, so they won’t have the mass appeal of the Jenny McCarthys or Kirbys. They don’t have backgrounds in journalism, so their writing is very much on the scientific side, using the terminology that, yes, as a physician, I am familiar with. I am still very thankful they are trying to counteract the pseudoscience of the biomedical approach.
As physician and as a mother of an autistic, I see and hear about the pseudoscience every day. I am glad there are those who can blog about evidence-based science, because I don’t have the time for it.
I absolutely agree with Kristina that more emphasis needs to be put on the education and life skills and needs of adult autistics as well as our children. The problem with the whole biomedical crowd is that they drown out this very important discussion, because to them, autism is curable and we should just concentrate on curing our children. That’s where the money should be spent.
I am almost done with Dr. Michael Fitzpatrick’s book “Defeating Autism: A Damaging Delusion”, and he elucidates exactly why this unorthodox movement has caused so much damage. It is a very difficult read, even for me. I’m not sure if it is because of the British English or whether he is, also, “verbose”, but with persistence, I have learned a lot and he puts the last 10 years in the autism world into perspective. If you get a chance to read it, you will understand why it is not only important to discuss the daily needs and issues for children and adults with autism, but how and why they last 10 years has made it so difficult to do so.
@CS,
On why the studies can’t be done
At this time, two percent of the population in the US do not vaccinate their children because the parents refuse to do so. There is no moral dilema in surveying those children for their autism rates.
Nevertheless, my observations are that the research community is every bit as protective of the vaccine program as they are protective of children. My second observation is that when research is started with the conclusion, it is easy to find the evidence necessary to get a not guilty conviction.
My third observation is that when mistakes are made, if the study supports the idea that autism and vaccines are unrelated then they are not caught. That could be related to the distinct lack of studies that might contradict this idea. You just provided an example of a study where a population was excluded from the MMR vaccine and still had cases of autism, concluding that autism and vaccines are not related.
The autism-vaccine debate has reached religious proportions. If it were proven that autism and vaccines are related then there would be those who will still say that they are not related as an article of faith. If it were proven that autism and vaccines are not related then there would be those who will still say that they are related as an article of faith. This is what the acrimony has brought us to. Research has to start with a solid base. Experiments done with a foregone conclusion on both sides have weakened that base. This is why I am calling for this experiment to be done.
The bottom line is that such a study should be done and likely will never be funded.
@CS,
The study I mentioned is here.
http://www.cranialsubluxations.com/medical_research/increase_in_head_size_may_predict_autism.htm
Storkdoc
Ed’s last post is exactly why your argument, though very reasonable and something I agree with, falls flat on its face with folks like Ed above. He’s looking at stuff from chiropractors and so forth who know nothing about autism. He’s not persuaded by qualified opinions. He’s looking for any bit of information that supports his beliefs, sort of like the UFO guys did last night on Larry King. As a matter of fact, the psychology of this crowd is very much like the autism quackery crowd.
The best thing to do, if everyone would do it, is to turn your head, get the AMA and AAP to do their jobs rather than parents to do it for them. Those two orgs. share in the responsibility for the quackery in my opinion because they are weak advocates. In the end, autistics suffer because everyone is spending energy on debating with stupid people.
@Storkdok,
I want to thank you for the point you made being essentially this: Autism is not curable and we should not waste time on trying to find a cure.
But I must disagree, not with the first part because I do not know if autism is curable. I only know that medical research on autism is not a waste of time. Even if the journey to the autism cure is an infinite one, along the way to learning what autism is and how it occurs are discoveries that will make the lives of our children better.
Today, you seek the help of ABA, of educational institutions, of behavioral therapy for your son. And you should. These will take your son as far as he is capable of going. While I have always accepted my son as he is, I do not accept the idea that the limits placed on him by his autism cannot be transcended. The key to that transcendance is medical.
I reject the psychiatric viewpoint that person A is normal and person B is psychotic, or manic depressive or autistic because of trauma induced by whatever. That is the root of the Bettleheim theory of refridgerator moms. There are real medical reasons for all of them. Lead and mercury are reasonable explanations for at least some of these issues. Psychiatric trauma is not. Freud was a fraud and it is time that the educational community expunged him from all but historical footnotes.
I further reject the Freudian trauma ideas because it gives the idea that there is no medical difference between a normal people and people with psychosis, depression or autism. That is giving up before starting.
“how it occurs are discoveries that will make the lives of our children better. ”
If you want to help, walk the halls of your state legislature and lobby for bills that will improve inclusion, opportunity, education, acceptance and independence through services and support. Promoting any other cause is a waste of time and a distraction.
@CS
In some ways you are right. I do not accept the qualified opinions because my experience has been that the experts have started with the conclusion and set out to prove it. You personally brought evidence to the table to that effect when you brought up the MMR study and generalized it to all vaccines. Yours is only one of many I have seen. If you want another, just go to the CDC autism site where the Syracuse University study is cited. It found that mercury disappears from the blood stream within three days, (Good data) and concludes that mercury is safe (Does not follow).
I know enough about statistics to know that the experiment to determine if there is a relationship between autism and vaccines is to measure the autism rate of the vaccinated against its control group, the unvaccinated. That experiment has never been done. That experiment is proper and I do not think that I am being obstinate in calling for it.
@CS,
If you want to help, walk the halls of your state legislature and lobby for bills that will improve inclusion, opportunity, education, acceptance and independence through services and support. Promoting any other cause is a waste of time and a distraction.
In the seventh grade, I was spending two hours every night getting him through his special education homework. Then we took an alternative approach to addressing the possibility of “leaky gut”. It was not the GF-CF diet. In two weeks, he was doing his homework by himself. My son now drives, and he attends college where he is studying engineering. I understand that in a sample of one what we did to address leaky gut may not have been responsible for the change. But to say that what we did could not have had anything to do with it makes an equally grave and common mistake.
I reject your assertion that there is nothing that can or should be done to find out what is going on medically and what can be done medically. And if you are unwilling to move from this assertion, we will just have to agree to disagree.
Ed, prove what you wrote.
@CS,
As I said in the previous post, I cannot prove that what happened to address leaky gut was what changed my son. But you already know that.
When I worked with David my objective was to find a way to help him, not to do a case study. What is available are the school records where you can see a boy who in second grade lost prodigious math skills to where he could not add past 5 without counting on his fingers. You would see a kid who took a typing class and at the end could not type at all. You would see a boy on Ritalin and later Adderall because he simply could not focus. You would see that the Ritalin and Adderall had limited success. You would see at the beginning of May in seventh grade a change was observed. You would see that he was doing better and that Ritalin and Adderall were dropped. You would see an autistic who kept getting better after puberty. The behaviorists will agree that “after puberty” is not the way it works. You would see the same one who had lost all of his math skills has passed Calculus I, II and III and Physics with Calculus.
This much can be shown (not proven) in the medical records. I want you to know that I reject your idea that there is nothing that can be done medically and that I have personal reasons for that rejection. I understand the rigor that researchers must go through. I can offer you no such rigor because that was not my purpose back then.
On your side, you can logically neither accept nor reject my assertion that my son was changed medically. What I ask from you is to understand that I was there I saw what happened and I believe that my son was changed medically. I ask that you understand that this personal experience is part of the reason that I reject your assertion that nothing can or should be done medically for autistic children.
@CS
Shown in the school records not medical records
One thing to make very, very clear. I am not CS, but Ed’s posts seem to confuse me (C. S. Wyatt) with the poster (CS) at times. I never — never — fail to sign my name and I try to remember to link to at least one of my Web sites.
I am a current doctoral fellow. My life is in research for at least one to two more years, before I return to my main passion and interest: creative writing / literature. Honestly, I plan to leave much of the “autism debates” to other people with more energy.
Ideally, I might spend time working with students “on the spectrum” with an interest in creative expression. Beyond that, I’ve stated before that I’m no where as driven as the “other CS” to engage in debates.
Just trying to clarify matters…
In actuality, a study to compare populations of vaccinated / unvaccinated would also need a massive (and I do mean massive) data source. You would need, roughly speaking, 1000 or more people in each group to extrapolate the findings — otherwise a pilot study could be valid with 150 to 200 in each group.
You would need information on the parents, genetic screening data, dietary information, tons of socioeconomic data, and much more. I would want to know every single variable I could, in case there are other parallels. For example, what if more of the non-vacc parents were also organic shoppers? I wouldn’t be surprised, since many non-vaccinated children are from well-educated, upper/upmid-class families.
You’d have to do an analysis to see if any variables match the correlation, indicating you would need yet more studies. Again, we know the better educated the family, the greater the chances of an AS / PDD-NOS diagnosis. (As if the poor never have Aspergers?) That’s simply because of awareness and willingness to have a child evaluated, I theorize — but I could be wrong. AS was once called the “Silicon Valley Autism” by ComputerWorld. Why? Because so many programmers / developers have the diagnosis or have self-diagnosed. From this, we certainly wouldn’t conclude that parents with high-tech careers have more autistic children, but statistically that would be true of the diagnostic rate in California (if you map the cases reported to OSEP).
So, to control for vacc/non-vacc, you need individuals from nearly identical social, geographical, and economic backgrounds. This gets very complex and might require years to develop a valid model for such a survey. Then, you still need to sell the survey to at least on IRB at a university or public research center.
Legally, I checked our IRB forms and I cannot conduct even a survey of minors or their parents without the survey being checked by the psychology member of the board. This is because some questions can raise “damaging fears” among parents and children. You must always provide “informed consent” forms that explain you are legally obligated to intervene in matters of child welfare.
Now, if I’m a parent and someone reads the IC forms from the University of Minnesota to me, I’d be really worried. It could be a study of homework habits, but the IC form still sounds like one of the drug warnings on television: “In rare cases, people die during studies.”
I have challenged the IRB to do studies of how children and adults with autism use the Internet. The last study was deemed “potentially harmful” until I revised the methodology twice. (I wanted participants to maintain written or offline journals of activities and how they felt during the activities.)
Honestly, IRBs are paranoid. There are historical reasons for the paranoia. Now, just as a teacher has to report abuse, a researcher has to act “in loci parentis” (sp?) during studies. That does make matters complicated. I must always consider the welfare of a child (anyone under 18), even if an entire study is ruined by some action I must take. (Example: Years ago, I had a student write about abuse. I had to report the writing to child welfare. Data were lost, study changed… life goes on.)
I just don’t think people should toss out “We need a study of…” so casually. Studies are expensive, time-consuming, and highly-regulated. Most are never completed, at least at R1 universities — and those failures are still important experiences. We revise the methodologies and try again.
I do know most studies published on autism use samples that are much too small for generalization. I think the samples probably start much larger and for a variety of reasons members of the population are excluded from final data. I know my IRB and department want at least 25 members of comparative populations for a simple pilot study.
As I said, just sharing my own experiences. For almost four years I’ve worked on one project and can attest that the process is slow. Very slow. If you want to follow children? You’re talking about years of monitoring, tracking everything because you can never, never trust parental surveys alone. You’d need every medical, school, and mental health record over at least five or six years.
When someone does get IRB approval, I’m sure it will be a grueling six years, plus at least two for writing, editing, and then peer-review publishing. What’s eight years?
And no, you cannot rely on surveys or data collection “post-experiential” for such a study. Too much might be forgotten or omitted. You need real-time monitoring.
I know I have things I’d rather do with my life. But, maybe the MIND Institute is up for getting this past the NIH someday. Eight years of steady work might be appealing to some statisticians.
C.S. Wyatt, you can clarify who you are without making assumptions about other people.
C.S. Wyatt,
I did confuse you with CS and I apologize.
You provide good insight on what it takes to gather data and I appreciate it.
I am not surprised that the IRBs are paranoid. Everything you tell me says that if any such survey were to be proposed it would get squashed like a bug based on the idea that parents cannot be frightened away from vaccines. I hope I am misreading it.
With the autism ratio of 1/160, the sample size necessarily must be large. A pilot program with 250 in each group hardly seems adequate. With the required sample size being so high I am not surprised to hear you say that most studies on autism are too small for generalization.
On the other hand, the ratio of vaccinated to unvaccinated is also very large. Statistics on the general population are ubiquitous and because the vast majority of the general population are vaccinated. What is not available are statistics on the unvaccinated population. I would start the pilot program with the unvaccinated population. But such a survey would throw the IRB into a fit and I expect that it will never happen.
Right now, the pundits throw out studies on the MMR, on thimerosal, on how thimerosal disappears in the bloodstream after three days and make the claim that these logically prove that there is no relationship between autism and vaccines. It does not logically follow. If you want to know if vaccines are related to autism, you must have a control group. I know it is a lot of work, but I do not believe I am being cavalier in calling for it.
@CS
To say you are more active was no assumption, nor is it in any way an insult. I have found several links / debates involving “CS” that started on this forum. Being active is certainly admirable… I just lack such energy, now.
@Ed
Most scientists and researchers I know have no time or energy to fight for changes to IRB protocols. You would need to change a system that is so vast, so regulated and worried about lawsuits, that it would take decades.
Heck, even people in the humanities and social sciences conduct research at the whim of IRB approvals. Any research, even of historical data, involving humans has to go through the IRB process at a university. It takes about two to three months to get a reply to the “intent to study” at some institutions, though others are faster. (I waited six months for my last approval — which merely meant I could submit my actual survey for IRB approval in round two… another two month process.)
Honestly, you study what interests you and what you can get quickly approved. For doctoral students, graduate fellows, and post-docs, time is very limited. If you know you have a post for two to four years, you cannot suggest a study that will take more than a few months. The approval process will eat one year, the data collection another year or two, followed by writing the various papers.
As I’ve said, you’ll be hard pressed to find researchers — especially when most of us need external grants and funding just to survive. My “salary” is grant money. It means I have to do research someone is willing to support and endorse. In my case, a college within the university approves everything I do, so I’m not directly aware of funding sources. They do that to protect objectivity. However, what gets funded is almost as important as by whom it is funded.
My research field — language acquisition (written), education, and autism — is receiving less and less funding. I’m sure most fields are struggling. As a result, I tailor my research to things I know will sound great to the widest possible audience (meaning as minimally controversial as possible). Few people are going to criticize research involving technology and special education.
Summary: I need to survive. I need money to pay bills. In 2010, I need to find another job, ideally as a tenure track professor. As a professor, it will be “Publish of Perish.” That’s also why I’m slipping back towards writing and general rhetoric… “writing programs” are the latest trend on campuses (writing across the curriculum, writing studies, first-year writing, and so on).
One does have to survive within a system. Plus, six or seven years dealing with IRBs and research, I’d rather write short stories and poetry. Creative non-fiction doesn’t require lots of paperwork and IRB committees.
CS Wyatt
I understand and good luck to you.
@CS
You hit the nail on the head. I and many other physician bloggers are working on the AMA and AAP and CDC and FDA to take the lead in fighting pseudoscience. They have been very weak since they were sued by the quack organizations, even though science prevailed, they seem scared because they may face another lawsuit.
My personal goal in 2009 is to lobby these organizations to take the lead and advocate for evidence-based science practices. I also am working on some projects in my state, along with our developmental pediatricians and our Maine CDC for education that is evidence based. I also am working on removing the CME for physicians who attend DAN! conferences.