Autism and its discontents are back in the news (were they ever out?) in three new areas:
- A celebrity (Jenny McCarthy) has written a book about her experiences with her 5 year old autistic child.
- More data is coming out from the Center for Disease Control (CDC) showing NO association of vaccines and thimerosal with autism.
- A federal court in Washington, D.C. is going to rule if the autism diagnosed in a 12-year-old girl was caused by a measles, mumps and rubella (MMR) vaccine administered when she was an infant.
I’ve written extensively about this before, so you likely know where I stand: I do believe autism is on the rise and, since our genes haven’t changed, there may well be environmental triggers. While we don’t know what these are, we do know what they are NOT: immunizations and thimerosal.
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Here are my thoughts about this latest trifecta.
1. First, a disclaimer: I haven’t read Ms. McCarthy’s book, so I’m speaking in general about the positives and the limits of one person’s story. I’ve read some wonderful books by parents of an autistic child. They have taught me a lot about the feelings they went through in the process, how the medical system let them down at critical times, and what they found to be supportive. These stories are often moving and especially validating and instructive for other parents who are just beginning to go through the process.
But I have a caution: One person’s story is just that: one person’s story. In autism (as in all of life) every child is is different, as is every family. Yes, some parents chose to devote a lot of time to their child’s treatment, but others – for all the right reasons – do not. There is no one right way to respond or feel, and I worry that parents who are different than the authors often feel guilty if they don’t share the writers’ perspective and feelings.
Second, one person’s story is “anecdotal,” meaning that you can’t draw scientifically valid conclusions from it. Sure one child may have seemed to respond to one treatment, but that doesn’t mean that another will. It takes looking at many kids and seeing how they responded to know if a treatment is really helpful. People write about successes but not the multiple failures with the same treatment. Since we have no cure for autism, I can’t tell you how many parents I know who have tried the latest “cure” – based on one person’s story – and the have been even more disappointed (not to mention shorter on cash) than they were before.
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2. I well remember one comment to my previous blog on this: “You are never gonna make me believe that vaccinations aren’t the main cause of autism! My son was fine until he received his MMR vaccination.” Sure, if your child showed developmental deterioration shortly after getting the MMR vaccine, you too would believe one caused the other. But, again, it’s anecdotal information.
The human brain is brilliantly programmed to connect events that occur together in time. If you heard a roar and then saw a saber–tooth tiger, it was reasonable to assume the tiger caused the roar and to take appropriate precautions thereafter. It works great most of the time. But it also leads to superstitions, which most of us have (In Little League, I hit my one and only home run after spitting on my dry hands for the first time. Every time thereafter, I disgustingly spat on my hands. Of course I never hit a home run again and thus had to become a pediatrician instead of a major league baseball player, but when playing baseball my hands were never short on spit).
It’s reasonable to wonder if the MMR causes autism. It’s actually a very plausible theory. The only problem with it is that it’s wrong. We know that because when you look at hundreds of thousands of kids who have received the vaccine and you do not find an association, you realize that the anecdotal cases are coincidences, pure and simple. When the rate of autism did not diminish after thimerosal was taken out of almost all immunizations, what should you conclude?
Yet, like the responder to my blog, many people refuse to believe careful studies, relying instead on their own superstitions or on conspiracy theories or on the advice of others who can’t be bothered with scientific data (who essentially and irresponsibly say, “Don’t bother me with the facts, I know what I know.”).
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3. If ever there was a sign that we Americans have been “lawyered” beyond all reason, having a court decide this issue could be exhibit #1. (Remember these are the selfsame geniuses who decided that silicone breast implants caused a world of trouble and awarded huge dollars to women as a result. When the scientific data later refuted these claims, I doubt the money was returned.) What next for our legal system? Perhaps. when there is professional disagreement, your local judge should decide which anticonvulsant medication would best help your child’s seizures.
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Here’s our dilemma in the field of autism. We don’t really know what causes it, nor what is the best treatment for it, nor do we have a cure. I don’t like it (and am quite hopeful that all the new research will elevate this current state-of-the-art) but them’s the facts. Responsible professionals at least admit it and do not succumb to anecdotal claims nor ask the courts to decide scientific issues. You shouldn’t either.