DAN OLMSTED: "ATTACKING" MY AMISH COVERAGE

With enemies like this, who needs friends?

By DAN OLMSTED

A blogger who posts at Autism News Beat has set out to demolish my reporting over the past few years about the Amish and autism –- and believes he’s come up with pretty damning evidence. Toward the end of the piece he asks, rhetorically, “So what’s up with Olmsted? Did a UPI reporter fabricate a story, then pass it off as true?”

Now that can really hurt a guy’s feelings, especially one like me who tries to pass himself off as a non-fabricator. Mr. Beat (the blog is not bylined –- see Mark Blaxill’s piece about the Wackosphere for more about that approach) is referring to my attempts to find autism in the Amish community.

The first article appeared in 2005 and was titled “The Amish Anomaly”:

“LANCASTER, Pa., April 18 -- Where are the autistic Amish? Here in Lancaster County, heart of Pennsylvania Dutch country, there should be well over 100 with some form of the disorder.” That was based on the 1-in-166 CDC rate at the time, which I applied to adults as well as children since I was testing the mainstream view that autism is a steady-state genetic disorder. If so, it should be identifiably present among all generations of the Amish, who tend to stay put and stay close.

But even if you just looked for kids, there should be plenty, since Amish families are large and often have eight, 10, even 12 children (you should see them set the table three times a day for that kind of crowd – it’s a marvel of efficiency and teamwork).

I pointed to debate over the diagnostic criteria for some manifestations of autism, and noted I was looking for “full-syndrome” cases – the unmistakable real deal, so to speak; the kind many people believe is increasing at a frightening rate; the impetus for the creation of Autism Speaks; the reason I started writing about autism in the first place.

Based on that approach, I wrote, “50 Amish people of all ages should be living in Lancaster County with full-syndrome autism, the ‘classic autism’ first described in 1943 by child psychiatrist Leo Kanner at Johns Hopkins University. The full-syndrome disorder is hard to miss, characterized by ‘markedly abnormal or impaired development in social interaction and communication and a markedly restricted repertoire of activities and interests,’ according to the Diagnostic and Statistical Manual of Mental Disorders.”

Rather unassumingly, the article stated “I have come here to find them, but so far my mission has failed. ...” I put it that way because my reporting was anecdotal and hardly exhaustive, and if more cases popped I wanted to write about them, too – not waste my time and energy defending some “definitive” conclusion about the Amish and autism. What matters is evidence, or the lack of it, and evidence has a way of becoming clear over time to open-minded people. (For a summary of my work so far, see “1 in 15,000 Amish” on our home page.)

Now, Mr. Beat has nailed me as a fraud as a result of his interview with “Dr. Kevin Strauss, MD, a pediatrician at the Clinic for Special Children in Lancaster County.”  They say I never contacted the clinic (demonstrably untrue many times over but irrelevant here), and Mr. Beat gleefully quotes Dr. Strauss as saying he “sees plenty of Amish children showing symptoms of autism.”

Smackdown! There are “plenty” of Amish children with autism! A serial fabrication has been exposed! Oh, but wait, let’s hear a little more about those children.

Mr. Beat continues: “Strauss said the clinic treats ‘syndromic autism,’ where autism is part of a more complicated clinical spectrum that can include mental retardation, chromosomal abnormalities, unusual facial features, and short stature, as well as Fragile X syndrome. ‘We see quite a few Amish children with Fragile X,’ he said.”

Short people, unusual facial features? Well-known genetic disorders with autistic features? That doesn’t sound like the autism that’s soaring out of sight and causing a public health crisis in the United States at this very minute, does it?

No, it doesn’t. And there’s a reason for that. According to Mr. Beat, “Strauss says he doesn’t see ‘idiopathic autism’ [autism for which the cause is unknown] at the clinic - 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.’”

So, let’s input this data: The sole clinic for special children in Lancaster County, heart of Amish country, doesn’t see “idiopathic” autism – the kind described by Leo Kanner in 1943; the kind that can’t be “explained” as a feature of genetic disorders with constant prevalence rates; the kind that every new parent in America is scared to death of, and rightly so? And this means the Amish have nothing useful to tell us about autism?

You make the call. But I’d say the evidence continues to accumulate that there’s something unusual going on here -- yes, an Amish Anomaly. If it’s genetic protection, so be it – let’s put some gene hunters on the case. If it’s fewer vaccines or a lower vaccination rate or less exposure to another “environmental” factor – something coming from the outside in – so be that, too.  Let’s find out.

I’ve got more coming – much more -- on the Amish and autism. Unlike Mr. Beat or Dr. Strauss, I now have met one Amish child with idiopathic autism and talked at length with her family, and her story is quite significant. Stay tuned while I "fabricate" it -- in the sense of putting it together, not making it up.
--
Dan Olmsted is Editor of Age of Autism

Comments

[Call it anything]

"Short people, unusual facial features? Well-known genetic disorders with autistic features? That doesn’t sound like the autism that’s soaring out of sight and causing a public health crisis in the United States at this very minute, does it?"

It is now time to distinguish our "bio-medical" community's autism from the rest of the names for similar conditions being bandied about, unnecessarily clouding the picture. The moment you call it Autism, the purely genetic holders of that condition get upset. You see it perhaps affects them another way entirely or perhaps not at all, and here we are saying its a bad thing, and we are trying to fix it, when they do not really see anything to fix. Then there is this name-calling that is mostly counter-productive, and takes valuable time away from the real issue at hand.

Back to the question of what we the "bio-medical" community should call our childrens' autism. It seems as though since the predominant thought might be that our children were neurotypical and later regressed, it would be safe to use the term "regressive" for our kind of autism. Some children regress with the first vaccine, others after booster shots, still others after the flu shots and then there are those who cannot identify a particular vaccine other than the truth that yes indeed the child did regress. They have before and after videos to prove this regression. Milestones are lost, typical achievements are lost.

Also the term "regressive" has already been used so much by the "bio-medical" community. The word also seems to do a good job of describing this condition with its related (call them regressive) physical health attributes such as - impaired methylation, impaired sulphation, impaired gastro-intestinal function, and finally immune system dysfunction (alongwith impaired respiratory, endocrine, immune, lymphatic, and reproductive systems). Please note that the nervous system has not been mentioned on here. It has been noticed that once the rest of the other impairments have been successfully treated, the nervous system tends to automatically straighten itself out.

That said, anybody who does not have to deal with "regressive" autism can rest assured that this discussion has nothing to do with them. Hopefully this has now been made clear.

[Tim Kasemodel]

I had seen ANB constantly asking about this clinic and why you "did not mention it" on so many blogs and websites I called the clinic myself about a month ago.

I got the phone number from their website which says absolutely nothing about autism. The receptionist told me they "do not treat any child with autism" at the clinic. They do however, as Dan pointed out treat kids that have disorders that are sometimes comorbid with behaviors similar to some autistic behaviors. That is a far cry from ANB implying that those kids have autism or are diagnosed with autism.

When responding to my comment ANB simply pulled out another favorite strategy of the "wackosphere" - to try to drag the conversation into another tangent of irresponsible rhetoric. This is a strategy that works to drag very emotional parents or advocates into aimless debate, wasting our precious time and energy. Most of us have figured this out (yes, I have fallen prey myself - too many times) and stay away from this tactic.

What is curious to me is how those like ANB can find the time, energy and commmitment to comment everywhere, everyday.