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	<title>Comments on: Autism Among the Amish?</title>
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	<link>http://www.autismstreet.org/weblog/?p=32</link>
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	<pubDate>Thu, 09 Sep 2010 18:48:18 +0000</pubDate>
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		<title>By: Dad Of Cameron</title>
		<link>http://www.autismstreet.org/weblog/?p=32&cpage=1#comment-151</link>
		<dc:creator>Dad Of Cameron</dc:creator>
		<pubDate>Sat, 01 Apr 2006 22:47:51 +0000</pubDate>
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		<description>Thank you for the clarification Michelle, it is sincerely appreciated.

More about Michelle's reasearch and advocacy at her &lt;a href="http://www.sentex.net/~nexus23/naa_02.html" target="_blank"&gt;website&lt;/a&gt;.</description>
		<content:encoded><![CDATA[<p>Thank you for the clarification Michelle, it is sincerely appreciated.</p>
<p>More about Michelle&#8217;s reasearch and advocacy at her <a href="http://www.sentex.net/~nexus23/naa_02.html" target="_blank">website</a>.</p>
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		<title>By: Michelle Dawson</title>
		<link>http://www.autismstreet.org/weblog/?p=32&cpage=1#comment-150</link>
		<dc:creator>Michelle Dawson</dc:creator>
		<pubDate>Sat, 01 Apr 2006 22:36:12 +0000</pubDate>
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		<description>For clarity, I was disagreeing with the specific assumptions that autism (however many genes are involved) is a mushy, non-valid, meaningless entity, and that researchers/clinicians who diagnose autism are just sort of guessing. 

I agree with DoC  that the media coverage was irresponsible. It is typical though.  E.g. recent media stories and press releases about MEF2 transcription factors came with big promises about autism, when autism is not even mentioned in either of the published (in the journal Science) studies.

And I agree about the eugenics stuff. I am amazed as usual that some non-autistics can't learn from previous strenuous and hideous efforts to ensure that only the "right" kind of people exist. 

All diagnoses of autism should be made according to DSMIV or ICD-10 criteria, but in any kind of credible science, this should be via one or more of the recognized diagnostic instruments (this is what I meant by "what standards"). Re MR they have mental ages (from Griffiths) for three of nine children. Epilepsy is extremely well documented, but the additional diagnoses are much less so in this study (I don't know enough to comment on ADHD diagnoses).</description>
		<content:encoded><![CDATA[<p>For clarity, I was disagreeing with the specific assumptions that autism (however many genes are involved) is a mushy, non-valid, meaningless entity, and that researchers/clinicians who diagnose autism are just sort of guessing. </p>
<p>I agree with DoC  that the media coverage was irresponsible. It is typical though.  E.g. recent media stories and press releases about MEF2 transcription factors came with big promises about autism, when autism is not even mentioned in either of the published (in the journal Science) studies.</p>
<p>And I agree about the eugenics stuff. I am amazed as usual that some non-autistics can&#8217;t learn from previous strenuous and hideous efforts to ensure that only the &#8220;right&#8221; kind of people exist. </p>
<p>All diagnoses of autism should be made according to DSMIV or ICD-10 criteria, but in any kind of credible science, this should be via one or more of the recognized diagnostic instruments (this is what I meant by &#8220;what standards&#8221;). Re MR they have mental ages (from Griffiths) for three of nine children. Epilepsy is extremely well documented, but the additional diagnoses are much less so in this study (I don&#8217;t know enough to comment on ADHD diagnoses).</p>
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		<title>By: Dad Of Cameron</title>
		<link>http://www.autismstreet.org/weblog/?p=32&cpage=1#comment-149</link>
		<dc:creator>Dad Of Cameron</dc:creator>
		<pubDate>Sat, 01 Apr 2006 20:18:42 +0000</pubDate>
		<guid isPermaLink="false">http://www.autismstreet.org/weblog/?p=32#comment-149</guid>
		<description>Michelle said, &lt;em&gt;"You could predict they would have a high rate of MR (they do, though how this was established is not explained). I don’t know what diagnostic standards were used to label the six Amish children “autistic”.&lt;/em&gt;

According to the table in the study about the MR, ADHD, and Autism diagnoses:

"In the six patients who were older than 48 months of age, the diagnoses were made on the basis of criteria listed in the Diagnostic and Statistical Manual of Mental Disorders, fourth edition."

 </description>
		<content:encoded><![CDATA[<p>Michelle said, <em>&#8220;You could predict they would have a high rate of MR (they do, though how this was established is not explained). I don’t know what diagnostic standards were used to label the six Amish children “autistic”.</em></p>
<p>According to the table in the study about the MR, ADHD, and Autism diagnoses:</p>
<p>&#8220;In the six patients who were older than 48 months of age, the diagnoses were made on the basis of criteria listed in the Diagnostic and Statistical Manual of Mental Disorders, fourth edition.&#8221;</p>
<p> </p>
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		<title>By: Michelle Dawson</title>
		<link>http://www.autismstreet.org/weblog/?p=32&cpage=1#comment-148</link>
		<dc:creator>Michelle Dawson</dc:creator>
		<pubDate>Sat, 01 Apr 2006 19:12:18 +0000</pubDate>
		<guid isPermaLink="false">http://www.autismstreet.org/weblog/?p=32#comment-148</guid>
		<description>I disagree. There is one predictive distinction dividing "autism in general", the primary/secondary difference (Pavone et al, 2004; Miles et al, 2005; Battaglia &#38; Carey, 2006; we wrote a bit about it in Mottron et al, 2006). 

In Battaglia &#38; Carey, the high standard for establishing diagnoses (ADI-R + ADOS-G; yes, we can diagnose precisely, otherwise we could not do research-- autism has standardized quantified diagnostic intruments) would predict that they would find very little epilepsy in primary autistics and in fact in this study they find none. This contrasts with secondary autism, where there is a high rate of epilepsy. Also, in this study, even when it was clear that "autistic" behaviours were secondary to another condition (in 14 out of the total sample of 85 autistics),  in four cases this etiology could be proposed (it must exist) but not named (this does happen; not all non-autism neurodevelopmental disorders have names, nor can their causes all be established yet). Further analyses (outside the parameters of this study) were said to be required.

The Amish autistics are secondary autistics. You could predict that they would have a high rate of epilepsy; in fact, that is how they were found. You could predict they would have a high rate of MR (they do, though how this was established is not explained). I don't know what diagnostic standards were used to label the six Amish children "autistic".

The primary/secondary division is not absolute; but in a significant minority of cases (10-30%), autism is secondary to other conditions, and often (not always), the primary non-autism condition is more determinative. 

I realize there is scant interest in autism research which consistently (and predictively) shows striking differences between primary autistics and non-autistics. That does not mean this research is not possible, or does not exist.</description>
		<content:encoded><![CDATA[<p>I disagree. There is one predictive distinction dividing &#8220;autism in general&#8221;, the primary/secondary difference (Pavone et al, 2004; Miles et al, 2005; Battaglia &amp; Carey, 2006; we wrote a bit about it in Mottron et al, 2006). </p>
<p>In Battaglia &amp; Carey, the high standard for establishing diagnoses (ADI-R + ADOS-G; yes, we can diagnose precisely, otherwise we could not do research&#8211; autism has standardized quantified diagnostic intruments) would predict that they would find very little epilepsy in primary autistics and in fact in this study they find none. This contrasts with secondary autism, where there is a high rate of epilepsy. Also, in this study, even when it was clear that &#8220;autistic&#8221; behaviours were secondary to another condition (in 14 out of the total sample of 85 autistics),  in four cases this etiology could be proposed (it must exist) but not named (this does happen; not all non-autism neurodevelopmental disorders have names, nor can their causes all be established yet). Further analyses (outside the parameters of this study) were said to be required.</p>
<p>The Amish autistics are secondary autistics. You could predict that they would have a high rate of epilepsy; in fact, that is how they were found. You could predict they would have a high rate of MR (they do, though how this was established is not explained). I don&#8217;t know what diagnostic standards were used to label the six Amish children &#8220;autistic&#8221;.</p>
<p>The primary/secondary division is not absolute; but in a significant minority of cases (10-30%), autism is secondary to other conditions, and often (not always), the primary non-autism condition is more determinative. </p>
<p>I realize there is scant interest in autism research which consistently (and predictively) shows striking differences between primary autistics and non-autistics. That does not mean this research is not possible, or does not exist.</p>
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		<title>By: Dad Of Cameron</title>
		<link>http://www.autismstreet.org/weblog/?p=32&cpage=1#comment-147</link>
		<dc:creator>Dad Of Cameron</dc:creator>
		<pubDate>Sat, 01 Apr 2006 15:03:23 +0000</pubDate>
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		<description>Thank you Prometheus, this is exactly how I saw it, especially after reading the study, but you've summed it up nicely. Not all of my Phoenix readers may know the Dan Olmsted story, but I think the more important distinction here is the &lt;strong&gt;genetic homogeneity&lt;/strong&gt; of the Amish and the &lt;strong&gt;difference between this result and autism in general&lt;/strong&gt;.

For anyoned interested in Dan Olmsted's (UPI reporter) claims which follow something along the lines of the Amish don't become 'autistic' simply because they don't get vaccinated and receive thimerosal, see the Prometheus post over at Photon In The Darkness - &lt;a href="http://photoninthedarkness.blogspot.com/2006/03/how-to-seek-and-not-find.html" target="_blank"&gt;http://photoninthedarkness.blogspot.com/2006/03/how-to-seek-and-not-find.html&lt;/a&gt;.</description>
		<content:encoded><![CDATA[<p>Thank you Prometheus, this is exactly how I saw it, especially after reading the study, but you&#8217;ve summed it up nicely. Not all of my Phoenix readers may know the Dan Olmsted story, but I think the more important distinction here is the <strong>genetic homogeneity</strong> of the Amish and the <strong>difference between this result and autism in general</strong>.</p>
<p>For anyoned interested in Dan Olmsted&#8217;s (UPI reporter) claims which follow something along the lines of the Amish don&#8217;t become &#8216;autistic&#8217; simply because they don&#8217;t get vaccinated and receive thimerosal, see the Prometheus post over at Photon In The Darkness - <a href="http://photoninthedarkness.blogspot.com/2006/03/how-to-seek-and-not-find.html" target="_blank">http://photoninthedarkness.blogspot.com/2006/03/how-to-seek-and-not-find.html</a>.</p>
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		<title>By: Prometheus</title>
		<link>http://www.autismstreet.org/weblog/?p=32&cpage=1#comment-146</link>
		<dc:creator>Prometheus</dc:creator>
		<pubDate>Sat, 01 Apr 2006 14:39:14 +0000</pubDate>
		<guid isPermaLink="false">http://www.autismstreet.org/weblog/?p=32#comment-146</guid>
		<description>DOC,

Absolutely right! While the Amish (and Old Order Mennonite) children with CASPR2 mutations &lt;b&gt;should&lt;/b&gt; have been counted by Dan Olmsted as "autistic" (in his two-part series on the lack of autism among the Amish), their disorder is not at all like the autism seen among the general population. 

This brings into sharp focus one of the significant problems with the daignosis "autism". Since it is based on subjective assessments of behavior, it is, at best, a very broad definition. Add in the imprecision with which the "label" of autism is used, and the term "autism" becomes nearly meaningless. In my own area, the "autism" label has been applied so broadly that it has moved from a medical diagnosis to a colloquialism. 

Additionally, the children who have been "diagnosed" as autistic are often more different from each other than they are from the general population. This suggests that there is more than one disorder being labled as "autism". Accordingly, the concept of finding "the" gene for autism is laughable - it would be like finding "the" cause for fever. 

Finally, eugenics is not only a dangerous policy, it is ultimately futile. Even discounting spontaneous mutations, eliminating a genetic disorder requires not only "eliminating" the victims, but also all the asymptomatic carriers - a &lt;b&gt;much&lt;/b&gt; larger number. 

And you never know what "useful" talents and abilities would be eliminated if a genetic "disorder" is eliminated. The genetic diversity of our species is an important source of genius and talent - reducing it will diminish that wellspring of abilities and turn us into a species with as much variety as a field of corn. 


Prometheus</description>
		<content:encoded><![CDATA[<p>DOC,</p>
<p>Absolutely right! While the Amish (and Old Order Mennonite) children with CASPR2 mutations <b>should</b> have been counted by Dan Olmsted as &#8220;autistic&#8221; (in his two-part series on the lack of autism among the Amish), their disorder is not at all like the autism seen among the general population. </p>
<p>This brings into sharp focus one of the significant problems with the daignosis &#8220;autism&#8221;. Since it is based on subjective assessments of behavior, it is, at best, a very broad definition. Add in the imprecision with which the &#8220;label&#8221; of autism is used, and the term &#8220;autism&#8221; becomes nearly meaningless. In my own area, the &#8220;autism&#8221; label has been applied so broadly that it has moved from a medical diagnosis to a colloquialism. </p>
<p>Additionally, the children who have been &#8220;diagnosed&#8221; as autistic are often more different from each other than they are from the general population. This suggests that there is more than one disorder being labled as &#8220;autism&#8221;. Accordingly, the concept of finding &#8220;the&#8221; gene for autism is laughable - it would be like finding &#8220;the&#8221; cause for fever. </p>
<p>Finally, eugenics is not only a dangerous policy, it is ultimately futile. Even discounting spontaneous mutations, eliminating a genetic disorder requires not only &#8220;eliminating&#8221; the victims, but also all the asymptomatic carriers - a <b>much</b> larger number. </p>
<p>And you never know what &#8220;useful&#8221; talents and abilities would be eliminated if a genetic &#8220;disorder&#8221; is eliminated. The genetic diversity of our species is an important source of genius and talent - reducing it will diminish that wellspring of abilities and turn us into a species with as much variety as a field of corn. </p>
<p>Prometheus</p>
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