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	<title>Comments on: So Much For Autism Awareness</title>
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	<link>http://www.blisstree.com/articles/so-much-for-autism-awareness/</link>
	<description>Family, Health, Home and Lifestyles</description>
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		<title>By: Last Week&#8217;s Top Posts</title>
		<link>http://www.blisstree.com/articles/so-much-for-autism-awareness/comment-page-2/#comment-550208</link>
		<dc:creator>Last Week&#8217;s Top Posts</dc:creator>
		<pubDate>Sun, 27 Apr 2008 00:21:37 +0000</pubDate>
		<guid isPermaLink="false">http://www.autismvox.com/so-much-for-autism-awareness/#comment-550208</guid>
		<description>[...] So Much For Autism Awareness  Robert Goldberg, the vice president of The Center for Medicine in the Public Interest in New York City writes about why Autism Awareness Month has become &#8220;not a noble search for a cure, but an annual war on the bookshelves, as scientists and activists - often with no medical proof - battle over lifesaving vaccines.&#8221; [...]</description>
		<content:encoded><![CDATA[<p>[...] So Much For Autism Awareness  Robert Goldberg, the vice president of The Center for Medicine in the Public Interest in New York City writes about why Autism Awareness Month has become &#8220;not a noble search for a cure, but an annual war on the bookshelves, as scientists and activists &#8211; often with no medical proof &#8211; battle over lifesaving vaccines.&#8221; [...]</p>
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		<title>By: Kristina Chew, PhD</title>
		<link>http://www.blisstree.com/articles/so-much-for-autism-awareness/comment-page-2/#comment-547382</link>
		<dc:creator>Kristina Chew, PhD</dc:creator>
		<pubDate>Wed, 23 Apr 2008 17:24:17 +0000</pubDate>
		<guid isPermaLink="false">http://www.autismvox.com/so-much-for-autism-awareness/#comment-547382</guid>
		<description>I&#039;d like much to get a synopsis---thank you. It&#039;s a two (plus) - headed effort, research and services.</description>
		<content:encoded><![CDATA[<p>I&#8217;d like much to get a synopsis&#8212;thank you. It&#8217;s a two (plus) &#8211; headed effort, research and services.</p>
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		<title>By: Tracy Stewart</title>
		<link>http://www.blisstree.com/articles/so-much-for-autism-awareness/comment-page-2/#comment-544341</link>
		<dc:creator>Tracy Stewart</dc:creator>
		<pubDate>Wed, 23 Apr 2008 16:18:19 +0000</pubDate>
		<guid isPermaLink="false">http://www.autismvox.com/so-much-for-autism-awareness/#comment-544341</guid>
		<description>Definitely not enough money goes to families! But the research is still important to try to  improve the health and condition of those already affected, or maybe even preventing cases by knowing causes. (ie, spina bifida research after years yielded the folic acid recommendations during pregnancy). There are likely many different reasons people develop autism, making it more difficult.

Here is a good immune system review article for those interested: http://www.jleukbio.org/cgi/reprint/80/1/1
UNC, I have about 60 or so others citations from pubmed,too long to list here. Anyone else interested can email me for them as well.

Kristina, I can send you a synopsis of the final bill that gets passed here (session ends next Friday, so it&#039;ll be soon) if you would like. I hope by making insurance coverage for some services available, families will be able to afford more services and our kids will have the supports to reach their max potential, whatever that is.</description>
		<content:encoded><![CDATA[<p>Definitely not enough money goes to families! But the research is still important to try to  improve the health and condition of those already affected, or maybe even preventing cases by knowing causes. (ie, spina bifida research after years yielded the folic acid recommendations during pregnancy). There are likely many different reasons people develop autism, making it more difficult.</p>
<p>Here is a good immune system review article for those interested: <a href="http://www.jleukbio.org/cgi/reprint/80/1/1" rel="nofollow">http://www.jleukbio.org/cgi/reprint/80/1/1</a><br />
UNC, I have about 60 or so others citations from pubmed,too long to list here. Anyone else interested can email me for them as well.</p>
<p>Kristina, I can send you a synopsis of the final bill that gets passed here (session ends next Friday, so it&#8217;ll be soon) if you would like. I hope by making insurance coverage for some services available, families will be able to afford more services and our kids will have the supports to reach their max potential, whatever that is.</p>
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		<title>By: Kristina Chew, PhD</title>
		<link>http://www.blisstree.com/articles/so-much-for-autism-awareness/comment-page-1/#comment-552880</link>
		<dc:creator>Kristina Chew, PhD</dc:creator>
		<pubDate>Wed, 23 Apr 2008 15:52:28 +0000</pubDate>
		<guid isPermaLink="false">http://www.autismvox.com/so-much-for-autism-awareness/#comment-552880</guid>
		<description>Education and services are something that (I think!) we can (?) more or less agree that we need and that there needs to &quot;more&quot; of: Better traing and supports for teachers and therapists. Better programs for all ages of students and for adults (and those programs would differ depending on individuals&#039; needs----supports for autistic college students, day programs for others, job coaches.....).  One frustration with all the $$ that (seem to) go to reseach are that those $$ don&#039;t go directly to autistic persons and their families.</description>
		<content:encoded><![CDATA[<p>Education and services are something that (I think!) we can (?) more or less agree that we need and that there needs to &#8220;more&#8221; of: Better traing and supports for teachers and therapists. Better programs for all ages of students and for adults (and those programs would differ depending on individuals&#8217; needs&#8212;-supports for autistic college students, day programs for others, job coaches&#8230;..).  One frustration with all the $$ that (seem to) go to reseach are that those $$ don&#8217;t go directly to autistic persons and their families.</p>
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		<title>By: Tracy Stewart</title>
		<link>http://www.blisstree.com/articles/so-much-for-autism-awareness/comment-page-1/#comment-552883</link>
		<dc:creator>Tracy Stewart</dc:creator>
		<pubDate>Wed, 23 Apr 2008 15:30:23 +0000</pubDate>
		<guid isPermaLink="false">http://www.autismvox.com/so-much-for-autism-awareness/#comment-552883</guid>
		<description>Agreed, Karen. The sad part is that it takes legislators and people in charge, so to speak, to experience autism firsthand before you can get some action (several people working on the FL bill have autistic children or nieces/nephews). Unfortunately, in the same year they&#039;re considering insurance coverage that specifically includes ABA and services like OT and ST for early intervention, they&#039;re horrendously cutting the state medicaid services used most by older children and adults (respite, other living services). I&#039;m all for early treatment, but you don&#039;t cut off those that it wasn&#039;t there for at the time! 

I am sure much of it is misclassification, but it&#039;s interesting that 2/3 of the people receiving autism services under Medicaid in FL are children under 18 (and nearly all of them are 10 or over because the waiting list is 7-10 years for help!) Only 1/3 are adults (many may be MR misclassified). Two people over the age 64 with autism services in the entire state. As more correctly classified persons with autism age, it will definitely bring a new dimension to the term &quot;autism awareness&quot;. Nothing gets the public and gov&#039;t attention like billions of dollars of costs.</description>
		<content:encoded><![CDATA[<p>Agreed, Karen. The sad part is that it takes legislators and people in charge, so to speak, to experience autism firsthand before you can get some action (several people working on the FL bill have autistic children or nieces/nephews). Unfortunately, in the same year they&#8217;re considering insurance coverage that specifically includes ABA and services like OT and ST for early intervention, they&#8217;re horrendously cutting the state medicaid services used most by older children and adults (respite, other living services). I&#8217;m all for early treatment, but you don&#8217;t cut off those that it wasn&#8217;t there for at the time! </p>
<p>I am sure much of it is misclassification, but it&#8217;s interesting that 2/3 of the people receiving autism services under Medicaid in FL are children under 18 (and nearly all of them are 10 or over because the waiting list is 7-10 years for help!) Only 1/3 are adults (many may be MR misclassified). Two people over the age 64 with autism services in the entire state. As more correctly classified persons with autism age, it will definitely bring a new dimension to the term &#8220;autism awareness&#8221;. Nothing gets the public and gov&#8217;t attention like billions of dollars of costs.</p>
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		<title>By: Storkdok</title>
		<link>http://www.blisstree.com/articles/so-much-for-autism-awareness/comment-page-1/#comment-544229</link>
		<dc:creator>Storkdok</dc:creator>
		<pubDate>Wed, 23 Apr 2008 11:17:47 +0000</pubDate>
		<guid isPermaLink="false">http://www.autismvox.com/so-much-for-autism-awareness/#comment-544229</guid>
		<description>I bowed out earlier because I thought that I was contributing to the spirit of Kristina&#039;s post on Autism Awareness month being taken over by the quibbling about vaccines (and DAN doctors and DAN protocol and the medical research) instead of more pressing issues like the education of our children.

We can all hopefully agree that the issues we face daily in advocating for our children for their educational needs and life skills, providing for the day to day needs of our children, are uppermost on our minds.  And don&#039;t even get me started on the respite and other home services (sucks when even existent, excuse my language).  The research and vaccine and DAN discussions are important, and we will have to agree to disagree on much of this, but what effects us most is the day to day education of our children.  

There is awareness, so much so that I and other parents I know get complaints from NT families about why we have to keep bombarding them with &quot;autism is 1:150&quot;, etc.  What these NT families haven&#039;t heard, because I ask them, is what the day to day is like and that our children do learn skills, that there are sometimes big differences between our kids as it is a spectrum, and why special education is important, that these kids are growing up and there are adult autistics.  I put that SPED reference in because here in Maine we have finally gotten a budget that is NOT slashing SPED and MaineCare and the adult services, like our governor was trying to do.  

If we can&#039;t stop arguing and agree to disagree on some of these issues to then hopefully provide a united front on the more important issues of education and our children&#039;s day to day needs, then how are we going to get things done for our kids?  Whatever you believe or hope for, a &quot;cure&quot;, &quot;recovery&quot;, or just basically helping your child to achieve their highest potential (my view), can we tone it down to focus on the most important issues, education and providing for the day to day needs, planning for the future and providing services for the adults who are in our society right now?

Okay, I am getting off my soapbox now, and hopefully I will hit the correct button and not erase this!

Everyone, I hope you have a great day!
Karen</description>
		<content:encoded><![CDATA[<p>I bowed out earlier because I thought that I was contributing to the spirit of Kristina&#8217;s post on Autism Awareness month being taken over by the quibbling about vaccines (and DAN doctors and DAN protocol and the medical research) instead of more pressing issues like the education of our children.</p>
<p>We can all hopefully agree that the issues we face daily in advocating for our children for their educational needs and life skills, providing for the day to day needs of our children, are uppermost on our minds.  And don&#8217;t even get me started on the respite and other home services (sucks when even existent, excuse my language).  The research and vaccine and DAN discussions are important, and we will have to agree to disagree on much of this, but what effects us most is the day to day education of our children.  </p>
<p>There is awareness, so much so that I and other parents I know get complaints from NT families about why we have to keep bombarding them with &#8220;autism is 1:150&#8243;, etc.  What these NT families haven&#8217;t heard, because I ask them, is what the day to day is like and that our children do learn skills, that there are sometimes big differences between our kids as it is a spectrum, and why special education is important, that these kids are growing up and there are adult autistics.  I put that SPED reference in because here in Maine we have finally gotten a budget that is NOT slashing SPED and MaineCare and the adult services, like our governor was trying to do.  </p>
<p>If we can&#8217;t stop arguing and agree to disagree on some of these issues to then hopefully provide a united front on the more important issues of education and our children&#8217;s day to day needs, then how are we going to get things done for our kids?  Whatever you believe or hope for, a &#8220;cure&#8221;, &#8220;recovery&#8221;, or just basically helping your child to achieve their highest potential (my view), can we tone it down to focus on the most important issues, education and providing for the day to day needs, planning for the future and providing services for the adults who are in our society right now?</p>
<p>Okay, I am getting off my soapbox now, and hopefully I will hit the correct button and not erase this!</p>
<p>Everyone, I hope you have a great day!<br />
Karen</p>
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		<title>By: UNCDoc</title>
		<link>http://www.blisstree.com/articles/so-much-for-autism-awareness/comment-page-1/#comment-554521</link>
		<dc:creator>UNCDoc</dc:creator>
		<pubDate>Wed, 23 Apr 2008 09:42:44 +0000</pubDate>
		<guid isPermaLink="false">http://www.autismvox.com/so-much-for-autism-awareness/#comment-554521</guid>
		<description>Alright, TS.  Sounds like it&#039;s just about your bedtime.  I&#039;ll let you have the last word.</description>
		<content:encoded><![CDATA[<p>Alright, TS.  Sounds like it&#8217;s just about your bedtime.  I&#8217;ll let you have the last word.</p>
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		<title>By: It&#8217;s Not So Hard to Be Green</title>
		<link>http://www.blisstree.com/articles/so-much-for-autism-awareness/comment-page-1/#comment-547259</link>
		<dc:creator>It&#8217;s Not So Hard to Be Green</dc:creator>
		<pubDate>Wed, 23 Apr 2008 04:21:32 +0000</pubDate>
		<guid isPermaLink="false">http://www.autismvox.com/so-much-for-autism-awareness/#comment-547259</guid>
		<description>[...] down to the last week-plus of Autism Awareness Month 2008. We&#8217;ve been asked to wear our awareness, to eat and shop and to give $$$$ in [...]</description>
		<content:encoded><![CDATA[<p>[...] down to the last week-plus of Autism Awareness Month 2008. We&#8217;ve been asked to wear our awareness, to eat and shop and to give $$$$ in [...]</p>
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		<title>By: Regan</title>
		<link>http://www.blisstree.com/articles/so-much-for-autism-awareness/comment-page-1/#comment-550918</link>
		<dc:creator>Regan</dc:creator>
		<pubDate>Wed, 23 Apr 2008 02:37:49 +0000</pubDate>
		<guid isPermaLink="false">http://www.autismvox.com/so-much-for-autism-awareness/#comment-550918</guid>
		<description>Tracy,
Thanks for your reply. Eleanor is a little older, but it does seem like only yesterday she was 5 and things are moving, but still too slowly for what might be needed. Hence my cautionary note.
Best to you for your efforts in FL. I did some advocacy work in my own state so I know it takes a lot of time and strategic juggling. I do some other work on other matters related to disseminating info on what is out there to help move it forward. As do many others. Thanks for your part.</description>
		<content:encoded><![CDATA[<p>Tracy,<br />
Thanks for your reply. Eleanor is a little older, but it does seem like only yesterday she was 5 and things are moving, but still too slowly for what might be needed. Hence my cautionary note.<br />
Best to you for your efforts in FL. I did some advocacy work in my own state so I know it takes a lot of time and strategic juggling. I do some other work on other matters related to disseminating info on what is out there to help move it forward. As do many others. Thanks for your part.</p>
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		<title>By: Tracy Stewart</title>
		<link>http://www.blisstree.com/articles/so-much-for-autism-awareness/comment-page-1/#comment-544071</link>
		<dc:creator>Tracy Stewart</dc:creator>
		<pubDate>Wed, 23 Apr 2008 01:42:48 +0000</pubDate>
		<guid isPermaLink="false">http://www.autismvox.com/so-much-for-autism-awareness/#comment-544071</guid>
		<description>Argh, like StorkDok, I fell prey to hitting submit too soon and lost my long post.

Regan, I feel you. Maybe your child is older than mine. I have a five year old. He can&#039;t talk. He is not potty trained. He is a beautiful, affectionate and happy child. I love him in a way that makes my heart feel like it will burst. I want him to have the best treatment and best chances for being happy. But I will change his diapers until I am 110 if I can.

I have worked for weeks here in Florida trying to get a bill passed to cover autism under insurance. This is because I consider ABA to be treatment, along with medical intervention. I am not generally a blogger (it&#039;s a waste of time LOL). I spend my time reading literature and advocating. I am still of the mindset that as a medically based diseases, autism and/or it&#039;s symptoms can be alleviated by intervention. To me, it is about treatment, hope and love. And it will be until he gets better or I am dead.

UNCDoc--I love it. You try to insult me, misquote me, go on and on about no evidence when I sent a link from the perfect source, and then call me antivaccine. And then, tell me to stop being knee-jerk and defensive? You can&#039;t expect to be a jerk and not get a little backlash, ok? I already am aware of BDNF and the early large brain effect that levels off with age, but clearly is related to the pathology. I know about prenatal effects such as diet and flu being factors for epidemiological increases in autism. So don&#039;t ask for cytokine papers in one breath and tell me I haven&#039;t read enough in the next, ok? I typed more to you earlier that I lost (blogging novice) so I&#039;m gonna keep it short this time: don&#039;t assume you know me. I am not a &quot;mercury mom&quot; and I am not a vaccine litigant. I find it one of many interesting avenues of study in autism. The CDC finds it interesting that high cytokines are associated with typical events such as  fever and seizures. Regardless of the underlying cause of the cytokines (could be anything, infection, genetics etc--does not have to be prior vax), this is an interesting result since ctyokines are elevated in autism. Period. I didn&#039;t say causation of vaccines, that&#039;s YOUR words, don&#039;t push that on me. 

My personal guess is that they are already elevated before any vaccine, not because of one. That&#039;s opinion however. I&#039;ll send you links to the studies, you can email me at tss8432@yahoo.com. Seriously, the immune angle is interesting, even without vaccines, and you should look more into it. I am not saying that obnoxiously, as it seems you did to me.</description>
		<content:encoded><![CDATA[<p>Argh, like StorkDok, I fell prey to hitting submit too soon and lost my long post.</p>
<p>Regan, I feel you. Maybe your child is older than mine. I have a five year old. He can&#8217;t talk. He is not potty trained. He is a beautiful, affectionate and happy child. I love him in a way that makes my heart feel like it will burst. I want him to have the best treatment and best chances for being happy. But I will change his diapers until I am 110 if I can.</p>
<p>I have worked for weeks here in Florida trying to get a bill passed to cover autism under insurance. This is because I consider ABA to be treatment, along with medical intervention. I am not generally a blogger (it&#8217;s a waste of time LOL). I spend my time reading literature and advocating. I am still of the mindset that as a medically based diseases, autism and/or it&#8217;s symptoms can be alleviated by intervention. To me, it is about treatment, hope and love. And it will be until he gets better or I am dead.</p>
<p>UNCDoc&#8211;I love it. You try to insult me, misquote me, go on and on about no evidence when I sent a link from the perfect source, and then call me antivaccine. And then, tell me to stop being knee-jerk and defensive? You can&#8217;t expect to be a jerk and not get a little backlash, ok? I already am aware of BDNF and the early large brain effect that levels off with age, but clearly is related to the pathology. I know about prenatal effects such as diet and flu being factors for epidemiological increases in autism. So don&#8217;t ask for cytokine papers in one breath and tell me I haven&#8217;t read enough in the next, ok? I typed more to you earlier that I lost (blogging novice) so I&#8217;m gonna keep it short this time: don&#8217;t assume you know me. I am not a &#8220;mercury mom&#8221; and I am not a vaccine litigant. I find it one of many interesting avenues of study in autism. The CDC finds it interesting that high cytokines are associated with typical events such as  fever and seizures. Regardless of the underlying cause of the cytokines (could be anything, infection, genetics etc&#8211;does not have to be prior vax), this is an interesting result since ctyokines are elevated in autism. Period. I didn&#8217;t say causation of vaccines, that&#8217;s YOUR words, don&#8217;t push that on me. </p>
<p>My personal guess is that they are already elevated before any vaccine, not because of one. That&#8217;s opinion however. I&#8217;ll send you links to the studies, you can email me at <a href="mailto:tss8432@yahoo.com">tss8432@yahoo.com</a>. Seriously, the immune angle is interesting, even without vaccines, and you should look more into it. I am not saying that obnoxiously, as it seems you did to me.</p>
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