BY DAN OLMSTED
Lisa Jo Rudy, the New York Times-owned about.com autism guide, wrote late last week that "if you read this blog regularly, you'll know that we've been having a very active conversation about the Amish and autism." No kidding!
I think that was more or less my doing, as I took exception to a piece she wrote – headlined "Do The Amish Vaccinate? Indeed They Do, AND Their Autism Rates May Be Lower."
But forget what Lisa said or what I said about what she said. That's not what this column is about. It's about what the Amish -- and those who know their ways and world -- have to say.
Look at the photo to the left, of a 9-year-old Old Order Amish child and her special ed teacher. This child's parents want people to know their never-vaccinated daughter was taken away from them at age 1, immunized at the Clinic For Special Children (more about them later), and returned a year later with full-syndrome, non-genetic, no-doubt-about-it autism (professionally diagnosed). That's why, contrary to Amish tradition, they let me take her photo. They are mad. They are heartbroken. This is not a study. This is not "a very active discussion about the Amish and autism." This is their child. And they believe vaccinations pushed her over into something they had never seen, something called autism. As people say: Get the picture? I'll show a video of her at Autism One, along with another Amish child whose parents believe she was vaccine damaged, but frankly I'm tired of the crap about how I make stuff up, get things wrong and never even visit the Amish, so the time has come.
Yes, Lisa et. al, some Amish are vaccinated, and yes, there does appear to be less autism. But read your own blog. This comment was posted below my Age of Autism article; a slightly different version is also below your original piece:
"I worked in a PA hospital that treated a lot of Amish. And I witnessed them being lied to and bullied into vaccines. And you can bet those babies are not vaccinated on the CDC's insane schedule --most were vaccinated when they were brought into the ER when sick.
YEAH, you read that right. The babies would be sick enough that they sought the ER and they would leave with a round of vaccines."
Now, that's interesting. Put aside the issue of whether vaccinating kids when they're sick is a good idea, or whether the CDC's vaccination schedule is insane. What we learn here – and I've heard this many times – is that the Amish are under relentless and increasing pressure to get vaccinated, but in most cases they are still NOT getting vaccinated the way the rest of our kids are. Maybe that explains why their autism rate still seems far lower than the 1 in 150 we hear so much about from the CDC.
Hep B at birth? I don't think so, since most Amish are born at home or in midwife centers, not at hospitals unless complications are expected. Every Child By Two? -- every Amish child vaccinated like clockwork just like the rest of America's kids, at their well-baby visits?
Again, I don't think so. The Amish do use doctors – they're not Christian Scientists, after all. But they tend to use alternative and traditional treatments as their first line of defense and go to doctors when they're really sick – what a concept! When they do go, it's to family practitioners and emergency rooms rather than to pediatricians, internists, sub-specialists that require referrals, etc. Remember, most Amish have NO medical insurance. Zero. How often would you go to the doctor, and to which ones, and for what reason, if you had zero insurance?
I've also heard plenty of stories from these real live Amish parents about public health officials showing up with fistfuls of vaccines on their doorsteps, offering (to the point of insisting) to inoculate all 6 or 8 or 10 children, whatever their ages, in one fell swoop. For free. And they do. And invariably some of those kids have reactions – reactions that don't get reported, because where is the follow-up? Certainly not in a telephone survey! Or maybe we expect these parents to get online and report it to VAERS? It's so easy. But with what PC hooked up to what power source, exactly?
The second comment I want to share with you goes right to the heart of the vaccination-autism-Amish issue. Lisa, you may recall, quoted a doctor at the Clinic For Special Children in Pennsylvania Dutch Country as saying that they don't see "idiopathic autism" – autism of unknown origin – even though this clinic says it does aggressively vaccinate children. They don't see, in other words, the kind of kid at the heart of today's controversy over the soaring autism rate. They only see predictable autistic "features" in kids with severe genetic disorders. Here's the quote from Dr. Keven Strauss:
"Strauss says he doesn't see 'idiopathic autism' at the clinic, which he defines as children with average or above average IQs who display autistic behavior. "My personal experience is we don't see a lot of Amish children with idiopathic autism. It doesn't mean they don't exist, only that we aren't seeing them at the clinic."
Now, in absolute contradistinction to that, check out these comments posted on Lisa's blog by a woman who signs herself as Martha Brinkley and says her son was vaccinated at 4 and 7 months [note: not at birth]. Using her name adds weight to what she says, and if anybody in a position of authority cared they could follow up on this:
"This is an interesting subject to me because we are members of the Old Order River Brethren in the heart of Lancaster County and for all practical purposes most folks consider us to be 'Amish.' Dr. Kevin Strauss [the one Lisa just quoted about seeing no 'idiopathic autism' in otherwise OK kids] saw our son at the Clinic for Special Children three years ago. He would not give Randall a diagnosis for autism because he said these problems are usually genetic and though we have not discovered all genetic disorders out there it was obvious he did not want to give a diagnosis based upon behavioral symptoms alone.
"He conducted a battery of genetic tests including Fragile X and nothing showed up. He further recommended us to Early Intervention. We followed his recommendation and he had an evaluation with EI and was diagnosed with classic autism by the psychologist. Dr. Strauss admitted that he had the symptoms of autism but would not give him this diagnosis. We did not go back to the clinic for Special Children because we felt like they did not have anything more to offer us."
Here is a parent saying that they couldn't get an autism diagnosis at the Clinic For Special Children because they were told autism only shows up in identifiable genetic disorders? Good grief – autism is supposed to be diagnosed SOLELY on behavioral criteria; check out the Diagnostic and Statistical Manual.
The child photographed right here, and at the start of the post, was vaccinated at the Clinic for Special Children after she was removed from her family in a dispute about how they were treating a chronic ear infection (sound familiar?). I've got the vaccine records (thanks to her mother) and it looks like she got her shots in just two installments -- playing catchup, a la Hannah Poling. She has no apparent genetic disorder of which her autism is a "feature" -- just good old-fashioned full-syndrome autism.
So where are we, friends? We're badly in need of the whole truth and nothing but – the kind you get from a powerful, expensive, independent, transparent, urgent study of vaccinated-versus-never-vaccinated American children. There's a bill in Congress to authorize exactly that, introduced – and reintroduced -- by the gutsy Rep. Carolyn Maloney, D-N.Y. Maybe when we get a new president, something will happen, since all three of the remaining candidates seem a lot more open-minded about what's happening than the current regime (to the abject horror of the mainstream media, which fears being marginalized above all else). Whether the Amish are the right group for that, especially after all the caveats, confusion and conniptions, I don't know. (Patrick Fitzgerald famously called this "throwing sand in the umpire's face" in the Scooter Libby case.) I think a better choice – and I've said this before – would be home-schooled kids or the fully documented data at Homefirst Medical Services in Chicago, which has thousands of never-vaccinated kids and almost no autism or asthma. Of course, the CDC says it can't be done, period.
Until then, perseverating on the Amish -- and trying to use them to knock down concerns over vaccines and autism -- is apparently going to continue. It's a waste of time (mine included) and a form of misdirection and, as I think I've shown here, quite often achieves the opposite result.
But I must confess I'm a little jealous of Lisa. Last I checked, her Amish post got 36 comments; mine only got 35. There is no justice.
Dan Olmsted is Editor of Age of Autism