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	<title>Comments on: Autism Speaks refuses to talk: 1.5 million autistic people? How do you figure?</title>
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	<link>http://leftbrainrightbrain.co.uk/2008/07/autism-speaks-refuses-to-talk-15-million-autistic-people-how-do-you-figure/</link>
	<description>Autism news and opinion</description>
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		<title>By: Michael</title>
		<link>http://leftbrainrightbrain.co.uk/2008/07/autism-speaks-refuses-to-talk-15-million-autistic-people-how-do-you-figure/#comment-52322</link>
		<dc:creator>Michael</dc:creator>
		<pubDate>Wed, 06 Aug 2008 17:10:59 +0000</pubDate>
		<guid isPermaLink="false">http://leftbrainrightbrain.co.uk/?p=931#comment-52322</guid>
		<description>In and audio podcast put out by Midnight in Chicago in July 2008 entitled &quot;Special Feature Interview with Douglas Giesel and An Update Interview with Lewis Schofield&quot; a thirteen year old boy has some choice words to say about Autism Speaks. 

They come at the end of the podcast, which can be found at www.mic.mypodcast.com</description>
		<content:encoded><![CDATA[<p>In and audio podcast put out by Midnight in Chicago in July 2008 entitled &#8220;Special Feature Interview with Douglas Giesel and An Update Interview with Lewis Schofield&#8221; a thirteen year old boy has some choice words to say about Autism Speaks.</p>
<p>They come at the end of the podcast, which can be found at <a href="http://www.mic.mypodcast.com" rel="nofollow">http://www.mic.mypodcast.com</a></p>
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		<title>By: Tom</title>
		<link>http://leftbrainrightbrain.co.uk/2008/07/autism-speaks-refuses-to-talk-15-million-autistic-people-how-do-you-figure/#comment-51848</link>
		<dc:creator>Tom</dc:creator>
		<pubDate>Mon, 14 Jul 2008 20:38:36 +0000</pubDate>
		<guid isPermaLink="false">http://leftbrainrightbrain.co.uk/?p=931#comment-51848</guid>
		<description>A couple of quick points.

Non-profits are notorious for playing fast and loose with numbers. This 1.5 million number was likely cooked up in the development office or mandated by the Wrights cuz it sounds like a really big number. The junior epi employee is in a tough spot cuz he can&#039;t defend the number yet can&#039;t undermine mgmt. Ah, fundraising.

Also, the Park Ave. address is the result of free office space from NBC.</description>
		<content:encoded><![CDATA[<p>A couple of quick points.</p>
<p>Non-profits are notorious for playing fast and loose with numbers. This 1.5 million number was likely cooked up in the development office or mandated by the Wrights cuz it sounds like a really big number. The junior epi employee is in a tough spot cuz he can&#8217;t defend the number yet can&#8217;t undermine mgmt. Ah, fundraising.</p>
<p>Also, the Park Ave. address is the result of free office space from <span class="caps">NBC</span>.</p>
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		<title>By: Patrick</title>
		<link>http://leftbrainrightbrain.co.uk/2008/07/autism-speaks-refuses-to-talk-15-million-autistic-people-how-do-you-figure/#comment-51842</link>
		<dc:creator>Patrick</dc:creator>
		<pubDate>Mon, 14 Jul 2008 18:36:01 +0000</pubDate>
		<guid isPermaLink="false">http://leftbrainrightbrain.co.uk/?p=931#comment-51842</guid>
		<description>Soo, did they ever get their grubby lil mitts on the diamond necklace to go on display at the ego address office of #2, Park way?  (yes I use #2 to look like THAT number two, bantha pudu, or worse.)

Pardon my continued disdain, but in my opinion, anyone who has to have such a showy mailing address is apparently more in it to keep the showy address operating than to really help la causa.

How do we describe someone who has no time to explain the gory detail(s) to the little people? As Flaming Narcissists, in my book.</description>
		<content:encoded><![CDATA[<p>Soo, did they ever get their grubby lil mitts on the diamond necklace to go on display at the ego address office of #2, Park way?  (yes I use #2 to look like <span class="caps">THAT</span> number two, bantha pudu, or worse.)</p>
<p>Pardon my continued disdain, but in my opinion, anyone who has to have such a showy mailing address is apparently more in it to keep the showy address operating than to really help la causa.</p>
<p>How do we describe someone who has no time to explain the gory detail(s) to the little people? As Flaming Narcissists, in my book.</p>
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		<title>By: Justthisguy</title>
		<link>http://leftbrainrightbrain.co.uk/2008/07/autism-speaks-refuses-to-talk-15-million-autistic-people-how-do-you-figure/#comment-51831</link>
		<dc:creator>Justthisguy</dc:creator>
		<pubDate>Mon, 14 Jul 2008 07:22:04 +0000</pubDate>
		<guid isPermaLink="false">http://leftbrainrightbrain.co.uk/?p=931#comment-51831</guid>
		<description>Farmwife, you know what Mark Twain said, &quot; There are lies, and then there are damned lies, and then there are statistics.&quot;

Your own kids are who they are, and might have their characteristic data recorded which would become statistics, but they are still individual human beings which cause the data and statistics, they are not the results of the statistics.</description>
		<content:encoded><![CDATA[<p>Farmwife, you know what Mark Twain said, &#8221; There are lies, and then there are damned lies, and then there are statistics.&#8221;</p>
<p>Your own kids are who they are, and might have their characteristic data recorded which would become statistics, but they are still individual human beings which cause the data and statistics, they are not the results of the statistics.</p>
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		<title>By: Joseph</title>
		<link>http://leftbrainrightbrain.co.uk/2008/07/autism-speaks-refuses-to-talk-15-million-autistic-people-how-do-you-figure/#comment-51821</link>
		<dc:creator>Joseph</dc:creator>
		<pubDate>Sun, 13 Jul 2008 13:50:24 +0000</pubDate>
		<guid isPermaLink="false">http://leftbrainrightbrain.co.uk/?p=931#comment-51821</guid>
		<description>&lt;i&gt;What do you get out of that exactly? &lt;/i&gt;

Harold is a concern troll. That&#039;s his apparent MO in most blog discussions. A clear instance  was demonstrated &lt;a href=&quot;http://autism-news-beat.com/?p=47#comment-458&quot; rel=&quot;nofollow&quot;&gt;here&lt;/a&gt;.</description>
		<content:encoded><![CDATA[<p><i>What do you get out of that exactly? </i></p>
<p>Harold is a concern troll. That&#8217;s his apparent MO in most blog discussions. A clear instance  was demonstrated <a href="http://autism-news-beat.com/?p=47#comment-458" rel="nofollow">here</a>.</p>
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		<title>By: Kev</title>
		<link>http://leftbrainrightbrain.co.uk/2008/07/autism-speaks-refuses-to-talk-15-million-autistic-people-how-do-you-figure/#comment-51820</link>
		<dc:creator>Kev</dc:creator>
		<pubDate>Sun, 13 Jul 2008 12:24:39 +0000</pubDate>
		<guid isPermaLink="false">http://leftbrainrightbrain.co.uk/?p=931#comment-51820</guid>
		<description>OT again, sorry.

Harold, I have nothing against you commenting here when you see fit. But you do not ever seem to want to actually debate the issues, just to have a quick sneer (which is usually mistaken, as in this case. You got the author wrong and mentioned some bizarre thing about your blog alerts) and then leave.

What do _you_ get out of that exactly? We know you don&#039;t like us. That&#039;s fine. At least the anti-vax brigade have a go at actually debating when they visit. There&#039;s a reason for them to be here. I have no idea what your reason for visiting any other blogs comments sections are.</description>
		<content:encoded><![CDATA[<p>OT again, sorry.</p>
<p>Harold, I have nothing against you commenting here when you see fit. But you do not ever seem to want to actually debate the issues, just to have a quick sneer (which is usually mistaken, as in this case. You got the author wrong and mentioned some bizarre thing about your blog alerts) and then leave.</p>
<p>What do <em>you</em> get out of that exactly? We know you don&#8217;t like us. That&#8217;s fine. At least the anti-vax brigade have a go at actually debating when they visit. There&#8217;s a reason for them to be here. I have no idea what your reason for visiting any other blogs comments sections are.</p>
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		<title>By: farmwifetwo</title>
		<link>http://leftbrainrightbrain.co.uk/2008/07/autism-speaks-refuses-to-talk-15-million-autistic-people-how-do-you-figure/#comment-51819</link>
		<dc:creator>farmwifetwo</dc:creator>
		<pubDate>Sun, 13 Jul 2008 11:19:46 +0000</pubDate>
		<guid isPermaLink="false">http://leftbrainrightbrain.co.uk/?p=931#comment-51819</guid>
		<description>Michelle, Ms. Clark, it&#039;s simply the wonderful land of statistics. I hate statistics, probably b/c I understand how they work. Society (news media) likes to twist them and make things worse that they are to feed whatever cause someone is working for and most people believe them that &quot;the sky is falling&quot;.

I understand the problem... all I have to do is look at my eldest son. Yes, he definately started 6yrs ago on the spectrum. Yes, he still has some &quot;quirks&quot; that we are still working on. But he&#039;ll be fine. Independant, hold a job, marry etc. So... will he still qualify as having PDD OR is he &quot;cured&quot; (I prefer the word &quot;educated&quot;) according to their Stats???

Not going to lose sleep over it... but it&#039;s something to think about.

S.</description>
		<content:encoded><![CDATA[<p>Michelle, Ms. Clark, it&#8217;s simply the wonderful land of statistics. I hate statistics, probably b/c I understand how they work. Society (news media) likes to twist them and make things worse that they are to feed whatever cause someone is working for and most people believe them that &#8220;the sky is falling&#8221;.</p>
<p>I understand the problem&#8230; all I have to do is look at my eldest son. Yes, he definately started 6yrs ago on the spectrum. Yes, he still has some &#8220;quirks&#8221; that we are still working on. But he&#8217;ll be fine. Independant, hold a job, marry etc. So&#8230; will he still qualify as having <span class="caps">PDD OR</span> is he &#8220;cured&#8221; (I prefer the word &#8220;educated&#8221;) according to their Stats???</p>
<p>Not going to lose sleep over it&#8230; but it&#8217;s something to think about.</p>
<p>S.</p>
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		<title>By: Ringside Seat</title>
		<link>http://leftbrainrightbrain.co.uk/2008/07/autism-speaks-refuses-to-talk-15-million-autistic-people-how-do-you-figure/#comment-51818</link>
		<dc:creator>Ringside Seat</dc:creator>
		<pubDate>Sun, 13 Jul 2008 09:14:13 +0000</pubDate>
		<guid isPermaLink="false">http://leftbrainrightbrain.co.uk/?p=931#comment-51818</guid>
		<description>No surprises here then. There&#039;s a parallel with Aids, where campaigners once generated projections suggesting that eventually everyone would get Aids. It&#039;s just what advocacy organizations do.

But then there&#039;s also a parallel with just about any medical condition, where the drug industry and its experts will promote stats vastly expanding the numbers affected, in order to vastly increase product markets.

Far from the anti-vaxxers being any kind of bane to the drug industry, they are among its assets.  Think of the lost profit on a couple of one-off shots, and then think of the profit gained on ten years of Ritalin.

I&#039;m surprised that Autism Speaks isn&#039;t funded by Merck.  

Or is it?</description>
		<content:encoded><![CDATA[<p>No surprises here then. There&#8217;s a parallel with Aids, where campaigners once generated projections suggesting that eventually everyone would get Aids. It&#8217;s just what advocacy organizations do.</p>
<p>But then there&#8217;s also a parallel with just about any medical condition, where the drug industry and its experts will promote stats vastly expanding the numbers affected, in order to vastly increase product markets.</p>
<p>Far from the anti-vaxxers being any kind of bane to the drug industry, they are among its assets.  Think of the lost profit on a couple of one-off shots, and then think of the profit gained on ten years of Ritalin.</p>
<p>I&#8217;m surprised that Autism Speaks isn&#8217;t funded by Merck.</p>
<p>Or is it?</p>
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		<title>By: lurker</title>
		<link>http://leftbrainrightbrain.co.uk/2008/07/autism-speaks-refuses-to-talk-15-million-autistic-people-how-do-you-figure/#comment-51816</link>
		<dc:creator>lurker</dc:creator>
		<pubDate>Sun, 13 Jul 2008 00:43:01 +0000</pubDate>
		<guid isPermaLink="false">http://leftbrainrightbrain.co.uk/?p=931#comment-51816</guid>
		<description>I&#039;m tired of the corporate mentality of the people running Autism Speaks in dealing with everything.  I wonder what their excuse is for not providing accurate statistics about something so basic.  First of all, I think that number has been used for too long and should be updated.  I don&#039;t like how they insist on using sharp numbers like 1 in 150.  Suppose hypothetically it comes out at another time to be 1 in 147 or 1 in 152, then they should start using an updated number, even if it&#039;s not nice or even.  

It should also be made clear that the figure is for the prevalence of autism spectrum disorders.  And there shouldn&#039;t always be a motivation to show ever increasing prevalences of autism.  I doubt that there could be many undiagnosed cases nowadays, particularly of those on the severe end of the spectrum.  It shouldn&#039;t be so difficult to come up with consistent numbers on prevalence rates.  There should be direct methods of acquiring all of the data needed to calculate the prevalence.</description>
		<content:encoded><![CDATA[<p>I&#8217;m tired of the corporate mentality of the people running Autism Speaks in dealing with everything.  I wonder what their excuse is for not providing accurate statistics about something so basic.  First of all, I think that number has been used for too long and should be updated.  I don&#8217;t like how they insist on using sharp numbers like 1 in 150.  Suppose hypothetically it comes out at another time to be 1 in 147 or 1 in 152, then they should start using an updated number, even if it&#8217;s not nice or even.</p>
<p>It should also be made clear that the figure is for the prevalence of autism spectrum disorders.  And there shouldn&#8217;t always be a motivation to show ever increasing prevalences of autism.  I doubt that there could be many undiagnosed cases nowadays, particularly of those on the severe end of the spectrum.  It shouldn&#8217;t be so difficult to come up with consistent numbers on prevalence rates.  There should be direct methods of acquiring all of the data needed to calculate the prevalence.</p>
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		<title>By: Joseph</title>
		<link>http://leftbrainrightbrain.co.uk/2008/07/autism-speaks-refuses-to-talk-15-million-autistic-people-how-do-you-figure/#comment-51815</link>
		<dc:creator>Joseph</dc:creator>
		<pubDate>Sun, 13 Jul 2008 00:35:46 +0000</pubDate>
		<guid isPermaLink="false">http://leftbrainrightbrain.co.uk/?p=931#comment-51815</guid>
		<description>I don&#039;t believe Harold cares about facts, data or  epidemiology at all. Is it surprising he thinks Autism Speaks&#039; claims about the count of autistics in the US is unimportant to him?</description>
		<content:encoded><![CDATA[<p>I don&#8217;t believe Harold cares about facts, data or  epidemiology at all. Is it surprising he thinks Autism Speaks&#8217; claims about the count of autistics in the US is unimportant to him?</p>
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