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Monday, April 18, 2005

The Age of Autism: The Amish anomaly

By DAN OLMSTED

Lancaster, PA, Apr. 18 (UPI) -- Part 1 of 2. 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.

I have come here to find them, but so far my mission has failed, and the very few I have identified raise some very interesting questions about some widely held views on autism.

The mainstream scientific consensus says autism is a complex genetic disorder, one that has been around for millennia at roughly the same prevalence. That prevalence is now considered to be 1 in every 166 children born in the United States.

Applying that model to Lancaster County, there ought to be 130 Amish men, women and children here with Autism Spectrum Disorder.

Well over 100, in rough terms.

Typically, half would harbor milder variants such as Asperger's Disorder or the catch-all Pervasive Development Disorder, Not Otherwise Specified -- PDD-NOS for short.

So let's drop those from our calculation, even though "mild" is a relative term when it comes to autism.

That means upwards of 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.

Why bother looking for them among the Amish? Because they could hold clues to the cause of autism.

The first half-dozen articles in this ongoing series on the roots and rise of autism examined the initial studies and early accounts of the disorder, first identified by Kanner among 11 U.S. children born starting in 1931.

Kanner wrote that his 1938 encounter with a child from Mississippi, identified as Donald T., "made me aware of a behavior pattern not known to me or anyone else theretofore." Kanner literally wrote the book on "Child Psychiatry," published in 1934.

If Kanner was correct -- if autism was new and increasingly prevalent -- something must have happened in the 1930s to trigger those first autistic cases. Genetic disorders do not begin suddenly or increase dramatically in prevalence in a short period of time.

That is why it is worth looking for autistic Amish -- to test reasoning against reality. Largely cut off for hundreds of years from American culture and scientific progress, the Amish might have had less exposure to some new factor triggering autism in the rest of population.

Surprising, but no one seems to have looked.

Of course, the Amish world is insular by nature; finding a small subset of Amish is a challenge by definition. Many Amish, particularly Old Order, ride horse-and-buggies, eschew electricity, do not attend public school, will not pose for pictures and do not chat casually with the "English," as they warily call the non-Amish.

Still, some Amish today interact with the outside world in many ways. Some drive, use phones, see doctors and send out Christmas cards with family photos. They all still refer to themselves as "Plain," but the definition of that word varies quite a bit.

So far, from sources inside and outside the Amish community, I have identified three Amish residents of Lancaster County who apparently have full-syndrome autism, all of them children.

A local woman told me there is one classroom with about 30 "special-needs" Amish children. In that classroom, there is one autistic Amish child.

Another autistic Amish child does not go to school.

The third is that woman's pre-school-age daughter.

If there were more, she said, she would know it.

What I learned about those children is the subject of the next column.

--

This ongoing series aims to be interactive with readers and will take note of comment, criticism and suggestions. E-mail: dolmsted@upi.com

Copyright 2005 by United Press International. All Rights Reserved.

Posted by Becca


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