A Parable

Wednesday, February 03, 2010

One of the many gifts I have been given as an educator and edu-carer for other peoples children is the gift of perspective. There is very little about child development and the educational process which I believe is set in stone. Furthermore, when you toss family dynamics and cultural, religious or moral values into the mix - Well. You have a billion right ways to raise a child.

One of the gifts I have been given as a Researcher and Academic is skepticism. Not disbelief, but skepticism. Until I have done my own research, I rarely assume what someone else has done meets my standards of academic rigor. That doesn't mean that I have to re-do Piaget's conservation experiments to believe his results. (Although, as an aside, these are Fascinating things to do with your own child - like a living textbook in action) Furthermore as a researcher, I have been taught to Look at any data or study and SEE if the data stands up. Who paid for the study? Was it purely an academic study or grant-funded by a specific group? Is the Primary Researcher a true "expert" in his/her field? And most importantly - Who will gain and who will lose with this study?

In every research project lies the very real possibility that harm can come from your results. Intentional or not. The researcher should be vetted and held accountable for the results of the data AND the interpretation of the data.

This is why - as a whole - Ethical, conscientious researchers are careful...very,very careful about making broad statements. If I say, for instance, that car seats Kill infants and every parent who places their baby in a car seat is taking a 50-50% chance with the life of their child - you would assume that I had a whole hell of a lot of data from which to extrapolate these claims, right?

What if I failed to mention - or failed to highlight - that the data I collected was of infants whose parents were drunk at the time of the accident? That My data Set was of 10 babies...5 of whom died in the crashes, and five of whom did not.

In truth, it IS 50%. And In truth, all babies were in Car seats when they died.

Now, what if I failed to mention that I did this research after getting a grant by the anti-car seat lobby? People who were trying to get laws passed, or repealed so that they would monetarily benefit from babies not being in car seats? Perhaps they are auto makers and the harnesses cost an extra 10 dollars per car to install. If you project to manufacture a million cars at 10 dollars saving per car ... Well, it is cost effective for me to give you 4 Million dollars for a study to save a net gain of 6 Million for Myself, isn't it?

But of course, the news that CAR SEATS KILL BABIES is sexy. Sexy in that news business kind of way. Sexy in that "I bet we can really crank up our viewer or readership by printing/reporting this" kind of way. And really sexy in that "We can prey on the deep fears of every parent that they are doing it WRONG" kind of way. Sexy in the "Maybe we can even try to tie it into the unease of a post-Watergate and Vietnam generation that corporations lie and governments and authority are not to be trusted" kind of way.

Oh, yeah. This becomes big news. People split on this issue. Friends split into car seat versus non-car seat people. Mothers have out and out arguments with other mothers. Parental Judgments reign supreme. Maybe even Oprah does a whole Show about the dangers of car seats!

But I - the researcher - knew that this was all bullshit. I knew how to conduct a proper experiment. I knew I was being paid and continued to be paid to be the front line Expert for a specific point of view. I knew my study could not be replicated because the results were...well, kind of made Up or at the very least Badly mangled as to skew them. However, for 12 years, parents held up my study as the reason - the EVIDENCE for why they didn't use car seats. In those 12 years, the rates of children dying in car crashes has indeed risen, but I mean - who is to say that this wasn't just an unfortunate side effect? In fact, I bet the government and manufacturers of car seats manipulate the data to make it seem more than it really is.... And anyway, my lawyers have told me not to comment, and my bank account is safe - so really, what is to be done?

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I knew that this MMR link to autism study had been discredited ages ago. I mentioned the flaws in the data methodology and design to hard core true believers who preached to me about the chances I took with Emily. I also pointed out that the reason vaccinations had been discovered was because Millions of children DIED from these diseases. Walk into any old Boston cemetery and find the gravestone of a mother - now find how many of her children lived Past the age of 5. Odds weren't good.

I explained the concept of "herd immunity" - how these diseases were now re-emerging and were becoming more dangerous to the people least able to manage the disease - Pregnant women, Infants too young to be immunized, elderly and immuno-suppressed people (Why yes, children on chronic asthma medication, I am talking about you!).

Did it matter? Did logic and common sense and the history or human kind mean anything to the true believers? Hell No. Did the fact that their decision was putting MY child and the general population that much more at risk mean anything? Nah. They had their parental rights and they were doing what THEY thought was best.

But now? The research is False. The doctor Lied. For his own personal profit and gain. Not because he cared so deeply about children with autism or any link between a vaccine and the (most likely genetically based) disorder. He - and the others who have profited by propagating a lie ( Um, Jenny McCarthy? Totally looking at You) - are going to defend themselves with silence. After preying on ANY parents worst fears - the ones around taking care of our children , of doing the best for them - and perverting them into profit while both actively selling a lie - Or not being intelligent enough to educate yourself about the philosophy you espouse?

My contempt is not great enough.

15 Baleful Regards:

Viki said...

I too have read a lot about the controversy over vaccines and worried about increasing diseases by children not getting them. I, however, am also alarmed about why autism is increasing. I doubt that even though this study is debunked most that believe their child got autism from the vaccine will still believe - until a real cause can be determined.

Dawn said...

Viki - its a valid question, but I also caution people to place this in perspective - Did babies die of SIDS before the Back to Sleep campaign started? Of course. Did children have autism that was called a million different things BEFORE the medical profession knew how to diagnose the disorder? Oh, yes.

Our screening is better is the first reason we see increasing numbers. We know what we are looking for. That helps a great deal in diagnosis.

Secondly, and this is the fuzzy bits of the science, there are lots of educated guesses as to the Why of autism. Is it purely genetic? Is it a mutation of a genetic property in the mother or father which mis-signals in the developing child's brain? Are the toxins in the adult environment affecting the formulation of sperm and egg and making some people more "at risk"?

Sadly it - and LOTS of other childhood disorders or delays - are simply mysteries right now. Its easy ( and soul satisfying) to point at a Thing and say "This is what caused my child to have this". I would love to know the moment that Em got her brain injury and change that - Did I roll on my belly while pregnant at some point? Did I put her in her crib too hard?

But there isn't any way to Know. And here is the hardest part of parenting ANY child, let alone a child with developmental obstacles - Parenting THAT child, for who they are Now.

And making sure the research we DO fund is ethical - I personally believe we will find genetic markers for autism, but this is not my field of expertise. I do know Very smart and ethical people who are devoting their professional careers to this issue.

Shannon said...

AMEN!

madge said...

I was reading something lately about the Vitamin D-deficiency connection to Autism symptoms (or the chicken/egg problem of it—does the Autism come with Vitamin D deficiency or does the deficiency bring about the Autism symptoms...ouch, brain hurts) and one of the doctors pointing to the link was saying how hard it was to get support for funding to even EXPLORE the link b/c the Vaccination-vilifiers had hijacked all the research dollars and PR.

Which is even more frustrating in light of this Lancet debacle. Argh. When did reasonable discourse become the exception?

julia said...

Well said again Dawn. You have a way of articulating exactly what I'm thinking, in a smart, calm sort of way. I just usually get all fired up, and cuss.

Karin said...

Thank you! Thank you for articulating this so beautifully.

Information always needs context and questioning. I used to teach a research course and spent the entire semester harping on two points: no single study proves anything and always question methodology and results.

Students were amazed at how many studies trumpeted by mainstream media were, in fact, very very questionable or really needed more research.

Even looking at the number of autism cases is tricky. The diagnosis of mental retardation used to be a catch-all phrase for many years. Today the terminology is much more specific, and the diagnosis of autism covers a wider spectrum including Asperger's, which wasn't diagnosed before. This doesn't mean it isn't increasing, but even the experts can't agree and are still researching.

And as an aside? People who take medical advice from actresses or other unqualified people? What the heck?

Mary said...

Thanks Dawn. I should point people to this post. You know, all those people who concern-troll ask me how I handle the guilt of giving my older son autism when I had him vaccinated. Those people.

Generally though I just try to get them to understand that Jenny McCarthy has no medical school background, and that listening to her is probably a dumb idea.

Colleen said...

Ah! Quite well said. I am in the medical profession, an though I mostly work with adults, I still am asked about this. I tell people of the research and they often tell me that the vaccine companies must be 'paying off' the FDA. My response is always that I get vaccinations, I believe in them and the good that they do for us. In my job, I have to believe that the FDA is making intelligent decisions based on fact and not money- or I guess I would never be able to prescribe anything ever again that I didn't create and research myself (which is obviously absurd). In college, I also did an internship with a developmental psychologist who was very interested in autism, and has done many studies involving infants, children, adults and the progression of autism. He always told us 'the age that kids gg vaccines and the age autism often presents are around the same point in time. But they're not linked in all but one study. Ever.' Just like in statistics (and basically all of life), correlation does NOT equal causation.
I'm kind of tired of having the same argument with people over and over again. I hope people finally let go of the vaccine-autism thing and focus their energies on perhaps finding out what actually causes autism. That might actually be more helpful than spreading measles and polio.

Dawn said...

Ah Yes, Colleen - My Mom was a pediatric nurse for most of my life, so I too learned at the knee of someone immersed in the field. I also heard about the kids who DID have these diseases who were in isolation in the hospital, and the consequences of not immunizing.

The brain is an amazing thing. The more I have learned about how we come to be - the bits and pieces and parts and coordination between parts ? It can leave you breathless. It can also make you aware that so many things can go wrong at so many junctions that "Typical" starts to fall further off the map.

And can you imagine if correlation meant causation? Our kids would be screwed. Maybe I would decide that when I tried to coax em into toilet learning, she happened to get a virus and vomit. That doesn't mean that every time she uses the toilet she pukes.

(Ps - reading a REALLY good book called "Between XX ad XY: Intersexuality and the myth of two sexes" Talk about blowing your mind at the genetic level!)

While I understand the need for people to be skeptical, I often feel like they are aiming it in the wrong direction. As I said to a friend - There was no Big Pharma when Measles would take out 50% of any given cities children - We developed these vaccines because of the Vast amount of people who died before they could come to the age of reproduction. Polio wasn't targeted because someone in a room thought they could fool parents into getting their child to take poison.

And don't get me started on the idea of the social contract - because then julia - I do get all fired up and cuss.

I think part of the issue was that people truly forgot what these diseases DID to children. It did become a vague abstraction ...then some kind of judgment about your parenting.

And Yes - it sucks ass to see your child cry when they get the shots. It sucks ass when they get a fever and are cranky after the shots. But you know what? Number one, it tells me that my child has a healthy immune system and it is reacting exactly as it should to the vaccine ....and Number two , adults who can't bear to see their baby fuss when having a shot need to put their big girl panties on and get a fucking grip. Then trot to a good psychologist and figure out what their issues are as soon as possible.

And Mary - I hope to hell you tell any person who has the gall to say that to you about your son to fuck the hell off. And include gestures.

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Nina said...

Halleluiah and amen and all that.
Thanks for writing this so rationally and succinctly.

(I may be even more passionate about this subject having just had a prolonged "According to the Russians Ultrasounds Cause Autism In Babies" rant from my mum).

Anonymous said...

I never got why people listened to Jenny McCarthy in the first place. She's an actress, not a doctor, and her child happens to have autism and she thinks she knows what causes it even though she had no proof other than it showed up at the time of the MMR vaccination... The words dumb bitch come to mind...

Hillbilly Princess said...

Hooray! I too hope that now they'll look for what really causes autism. Did it ever occur to all the anti-vaccine people that vaccinating our kids isn't the only change we've made in modern society that could cause the higher rates of autism? Sure, our grandparents didn't get the MMR shot, but they also didn't eat fast food three times a week, either. They didn't let their children drink soda everyday. They didn't use teflon or plastic bottles or artificial sweeteners. I'm NOT the type that's overly paranoid about any of those things (I drink Diet Coke by the gallon, for example), but researchers are starting to take notice of those things as well. There are so many things that have "changed" in the world that we may never know the cause, but at least now they'll start looking.

julia said...

Dawn:
I don't mean to bring up a sore subject, but I remember you telling us that someone had "borrowed" your idea, of TWC. I ran across a site VERY similar, and am wondering if that is the one. Can you let me know? I want to refuse to read it, if it's the one you are referring to, as a silent protest.
You can email me at my gmail account. juliakayriley@gmail.com

velocibadgergirl said...

Amen, amen, amen

 
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