Autism and MMR Link, Parents Fooled, Follow the Money, Then LISTEN

I’ll begin this post by saying that I understand the basics — that many parents of children with autism believe that autism was brought on by vaccines.  And that scientific research has over and over again proven that link does not exist.

Then I watched the Dateline / Matt Lauer interviews and exposé, A Dose of Controversy, about where that suggestion came from, profiling Andrew Wakefield, the doctor/scientist who first suggested that link existed, and who is now hailed a hero by many of those parents who still believe in the connection.  Also interviewed were two more major players in the argument – Brian Deer, a British journalist who has exposed Wakefield over and over again, and Dr. Paul Offit, infectious diseases expert from Children’s Hospital of Philadelphia, who has written a book called Autism’s False Prophets which lambasts Wakefield’s work.

Matt Lauer pulled no punches in his questioning of any of the three.  It’s very clear that the worshipping behavior of these parents who believe that somehow Andrew Wakefield represents the second coming is misplaced.  But even more than that – it’s very easy to see how we observers must use the follow the money rule on all three of these men.  Perhaps an even bigger lesson has to do with LISTENING.

But we also must remember in the midst of this — that many studies (I can’t find a number, but it was suggested there were at least dozens) — studying, literally, MILLIONS of children — have proven every time (not just some, but every time) that an autism-vaccine link DOES NOT EXIST.  Even The Lancet, a highly respected medical journal, the one which originally published Andrew Wakefield’s article about that link, has stated that they never would have published it if they had known how Wakefield’s work had been funded (see below.)

Follow the money (FTM) — it’s the rule that helps explain a lot of the “why’s” in healthcare.  Here are examples, as applied to the questions about autism:

FTM explains why Andrew Wakefield would continue asserting that the MMR vaccine causes autism — because he is/was paid in at least two ways to make sure that was clear.  First, he was paid at least $750,000 by a company that developed a measles-only vaccine that could have been used as a substitute for the MMR.  Now, under suspicion for other (unspecified) charges in his native England, he has set up an outpost in Austin, Texas (have to wonder about the wordsmithing there — Austin and Autism) — but is not licensed to practice medicine in the United States.  Parents are paying thousands of dollars to have their children tested for certain gastrointestinal problems possibly related to autism, but it was unclear as to whether any children have actually been helped by Wakefield.  Further, outside of parents talking about how wonderful he is, none seemed to be able to pinpoint exactly why — except that he listens.

(All other doctors of every stripe — please take heed of that — HE LISTENS.)

Brian Deer – his FTM is a bit easier to track.  He is paid to do his investigating and writing, so finding a goldmine like Andrew Wakefield is job security.  It should be noted that Deer also needs the money to defend himself legally. He has been sued a number of times by Wakefield — always unsuccessfully — Deer has always prevailed, able to prove that his allegations about Wakefield were accurate and defensible.

Dr. Paul Offit requires some FTM analysis as well.  Beyond the income from his book where he alleges that parents have been scammed by Wakefield for more than 10 years, he is full-on supportive of vaccines – including the fact that he is the developer-inventor of one vaccine.  So yes, he makes money as the developer of the vaccine, which seems to be unrelated to autism.  Interestingly, he has an expense many would not ever think of — he is forced to pay for bodyguards, because some of those Wakefield supporting parents have threatened his life.

Here are some beliefs I hold, which affect my beliefs about this controversy:

• I absolutely believe each of these parents who has observed their children well enough to say “She was fine, then she got the vaccine, and something happened.”  I don’t question that for a minute, because I do believe parents are THAT WELL tuned in to their children.
• I also know human nature well enough to understand why parents cling to any belief that would help them explain something that is otherwise not understandable.  As humans, we all want to assign blame. It’s the reason we can’t cope with problems like Hurricane Katrina, or any other mother nature related catastrophe — because there’s really no one to blame.  By clinging to the vaccine-as-perpetrator, parents have someone to blame, plus the bonus of a hero in Wakefield.  (Plus making Jenny McCarthy a hero — another story for another day.)
• When people are desperate, like these parents with autistic children, they will go to extremes, even when those extremes don’t make sense.  To so desperately believe in something that has been disproven in so many ways, and to be threatening the life of someone who truly makes sense — these are moves of desperation.

Combining those beliefs, and having done a brief FTM analysis – we have to look at some bigger picture questions, too.  I provide no answers here — I’m just sayin’…

• So what if Wakefield and all these parents are right?  What if the MMR vaccine DOES trigger something that causes autism?  Maybe it’s not the vaccine itself — maybe the child happened to have eaten something that day, or has another very mild, asymptomatic virus or bacteria in his body — or ?  It could be the vaccine in a combination with something else – I do know a genetic link is being studied, too.
• Even if there is a link — how does that change things for the parents whose children do have autism?  It doesn’t mean there is a cure.  You can’t subtract the vaccine from their bodies.  So why would parents put so much energy into their hero-making – at the expense of taking time away from their own children to do it?
• Autism is a “spectrum disorder” — is it possible it’s not just one thing?  Is it possible that even though the symptoms and some of the behaviors are similar, that these children really have different disorders — triggered by different things?  Whose to say that some forms of  ADHD, for example, aren’t really a part of that spectrum?  I know there are many discussions of misdiagnosis among both autism and ADHD diagnoses….

Finally — I believe the bottom line here is the fact that NONE OF THESE PROFESSIONALS get the fact that the passion and desperation fuel this fire and that the people who feel the most maligned (the parents who believe in Wakefield) do so because they feel that he LISTENS.

And that is the bottom line for today’s very long-winded post.  We all need to listen more because listening, then responding appropriately, will lend itself to compromise and understanding — no matter what the controversy.

I’m listening — what can you tell me that will help explain what I don’t understand?

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