Saturday, February 6, 2010

Some Autism Talk

I've been trying to formulate this post in my head for a couple of days, but all the little bits of it are flying around up there and I can't get them to settle. Here goes.

Earlier this week I read a news story online about the Lancet retracting the study by Dr. Andrew Wakefield potentially connecting the MMR vaccine with autism and bowel issues. For those of you not familiar, this study has been a source of serious controversy for a good few years now, with Dr. Wakefield having been accused of professional misconduct, both in how he obtained the data for his paper and in failing to disclose that he was being paid by lawyers representing parents of autistic children who were potentially looking to launch a lawsuit. He has denied the charges. Ten of his 12 co-authors have published retractions, essentially removing themselves from the whole thing. Is he a guilty scumbag who falsified data and took kickbacks? Is he the innocent victim of a smear campaign headed up by a pharmaceutical industry that has a whole lot to lose in all this? Or do the facts fall somewhere in between? I have absolutely no idea.

I don't know why I still do this to myself, but after reading the article, I scrolled down and started perusing the reader comments. There were hundreds of them. It's a very hot topic, especially for those of us with children on the spectrum. But there was very little talk about the actual article. You know, the part about the doctor who maybe, possibly, probably screwed things up badly enough to have his work completely discredited?? What everyone really seemed to want to do was debate the vaccine theory.

I have my own very strong, controversial opinions on this theory so I understand that desire to convince people one way or the other. In moments of serious irrationality (WHO? ME?!), I have posted articles, opinions and lord knows what else on facebook for all my family, friends and casual acquaintances to be thoroughly alienated by. I have no problems with people sharing what has worked for them. God knows, at this point, that's about all we've got. But when you're talking to someone who has her very own little human petrie dish at home, feeding her new data every day about the puzzling, mysterious, baffling conundrum that is autism, you're unlikely to change her mind. She already knows. Very few of us are just sitting on the fence waiting to be enlightened. And to try to convince the mother who watched helplessly as her child regressed after a vaccine that it was a mere coincidence--or to inform the mother who knows in her heart that it's entirely genetic that the numbers don't add up--is self-righteous and a waste of breath.

It isn't that I don't want the whole world stepping up and shouting about this at the top of its collective lungs. Something that, in the span of less than 30 years, has gone from an incidence rate of 1 in 10,000 to 1 in 110 is something we should all be setting aside our bickering for, and demanding answers to. Research needs to be done, and it needs to be done thoroughly. We don't need guesswork. We need answers. And we need help.

And if what Dr. Wakefield is accused of turns out to be true, it doesn't matter what side of this issue any of us sits on. He's set back progress either way, and done ALL of our children a grave disservice.


Deb Neerman said...

Very interesting ... and very well-written, so thanks, Kiddo! You're always learning me something!!

With the unbelievable increase in the incidence of autism, I simply CANNOT believe that every one of us isn't up and screaming for answers! And is it occurring in 1 out of 110 births now? Left as we now sit, how long before it's 1 in 50? Then 1 in 10? Then 1 in 2?

This is, I think, without question environmental. And we need to find out exactly what that is ASAP. As women and mother's, I think we've gotta start making a lot of noise about this. A LOT.

Suburban Princess said...

Here's what I have a problem with...

Okie so let's say he was paid by one side of the debate.

Who is paying for all of the studies now? Ummm Big Pharma perhaps!? So every study saying autism is 100% NOT linked to vaccines (I am sure you know exactly how many your children are expected to have before the age of 1) has been paid for by a drug company. Why is that not coming up in the news? Why is that not discrediting the information?

Someone has to be paying for these studies.

This is a HUGE topic around here - fortunately we live in Canada where choice is protected by law!

Have you see this...

knitwit said...

Suburban Princess--thanks for the link. I hadn't seen it, but it doesn't surprise me in the least. And I absolutely agree with you about the pharma companies, and that these studies have to be funded by someone. I think my concern here is that Dr. Wakefield's research may have been completely above-board. But the allegations of him taking personal payment and not disclosing that conflict of interest has now already given the other side a good argument for throwing the entire study out. And this leaves those of us who KNOW that the MMR did something to our kids without a leg to stand on when trying to get the doctors to treat for vaccine damage. The pace at which this problem is being tackled frightens me because Deb is right. At some point, probably sooner rather than later, this epidemic is going to affect 1 in 10 kids, or more. Exactly how many of our kids have to be affected before someone finally steps up and makes it a priority?!

Janine said...

Hi Wendy!! Thanks for all the information... It will make for some interesting reading..
Hope all is well with you and the boys!!

MODG said...

this is definitely something I'v e been thinking about, the more I think about having babies.

In Real Life said...

This is a subject close to my heart too.

I had read the article as well, (thankfully, I did not have time to scroll through the comments) and felt really sad after reading it. I worry because, if we can't trust the research as we muddle through and try to find our answers for our children, and to find a path regarding treatment, therapies, etc. that we think will be best for them - who can we trust? Where can we look for these answers? If we can't trust the research or researchers, where does that leave us? If we find what we think might be an answer are we going to just be told a short time later "sorry, that was false." And we can't really trust the people who are telling us the data is false anyway.

Laura said...

I know this post was seriously in the past but I couldn't help but throw my 2 bits in.
I know a woman who has 8 children. Her first couple, boys, were normal then her 4th, a girl was quite autistic. Not real high functioning, but almost here. She had another normal baby, then her next 2 were autistic. This includes both autistic boys and girls for this woman. I won't get into why she kept having children, but it was some time ago, most of them are grown now. She quickly came to the conclusion that it was these vaccines doing this to her only daughter. All the children got them but she was just a newborn at the time. There was no way to tell before hand that she was autistic.
After having 3 children out of 8 being autistic,she had to admit that the vaccines were not the cause of it. The younger children didn't ever receive the vaccinations. A couple years later there was another interesting factor. Her husband left her and started over with a new wife, started a new family. Well, they had just as big a ratio of autistic babies as this woman I know. Seems like with data like that it would be easier to narrow down right?
I don't know if theres actually other families out there with this type of circumstance but all the same, it would be interesting.