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        <![CDATA[Latest posts for the topic "Questions for Dr. Paul Law" recent IAN discussions]]>
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				<title>Questions for Dr. Paul Law</title>
				<description><![CDATA[ Dr. Law,
I had the pleasure of seeing you at the Autism Speaks Leadership Conference in Washington. I am so excited about this project! I think it truly will move us closer to the answers we are all desperate for!

I have filled out the questionnaires for all 7 of my family. I was wondering after doing this, if you were going to ask questions about two things that have interested me...1) Do many parents note that their children with little communication, actually communicate well when they have a high fever? (sounds weird, I know, but my little guy uses complete sentences when he is over 103 degrees) and I have spoken to several parents who note the same. and 2) How many children were actually induced using Pitocin to hasten labor? This is another thing I have heard from many moms.

Thanks,
Sharon
Southwest Florida
Autism Speaks 
Co-Chair ]]></description>
				<guid isPermaLink="true">http://kki.qorvis.com/forum/posts/list/40.page#97</guid>
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				<pubDate><![CDATA[Tue, April 3, 2007]]> GMT</pubDate>
				<author><![CDATA[ fullhouse]]></author>
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				<title>Re:Questions for Dr. Paul Law</title>
				<description><![CDATA[ Dear Sharon,
      First, thanks for your endurance in completing the IAN questionnaires for such a large family.  
     * Fever definitely seems to affect everyones behavior.  I remember enjoying (at some level) the times when my son with autism was sick because he became more affectionate.  While the effect of fever on autistic kids is difficult to study, Dr. Andrew Zimmerman here at KKI has been doing just that.  Here is a link to a description of his work.  http://www.jhsph.edu/cadde/Presentations/IMFAR05.html

     * On June 19th in Baltimore we are hosting a conference for researchers from all over with varied backgrounds.  During this conference, we will develop several additional questionnaires including one about pregnancy history.  I am sure that the issue of pitocin (while it has been studied many times) will come up.
      ]]></description>
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				<pubDate><![CDATA[Tue, April 3, 2007]]> GMT</pubDate>
				<author><![CDATA[ Paul-IAN Director]]></author>
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				<title>Re:Questions for Dr. Paul Law</title>
				<description><![CDATA[ Dr. Law,

Would you be able to provide me with any information about the minocycline trials that are being conducted at Johns Hopkins?  Any insight would be greatly appreciated.  If you wish you can provide me with your response via email at autismcosupport@gmail.com if you feel that is more appropriate.]]></description>
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				<pubDate><![CDATA[Wed, April 18, 2007]]> GMT</pubDate>
				<author><![CDATA[ Samsdad]]></author>
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				<title>Re:Questions for Dr. Paul Law</title>
				<description><![CDATA[ Hi, Samsdad!

I will email you this information, as well, but just so everyone reading can be informed:

IAN Research will soon play a role in helping link researchers and families. In the meantime, and in addition, if you are interested in participating in clinical trails, the best place to look for them is at www.clinicaltrials.gov.

There is an easy search function there that will permit you to find clinical trials recruiting to test treatments for many disorders or diseases.

For example, the trial asked about is called "Minocycline to Treat Childhood Regressive Autism", and you can read about it at: http://www.clinicaltrials.gov/ct/show/NCT00409747?order=1

]]></description>
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				<pubDate><![CDATA[Mon, April 23, 2007]]> GMT</pubDate>
				<author><![CDATA[ Paul-IAN Director]]></author>
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				<title>Re:Questions for Dr. Paul Law</title>
				<description><![CDATA[ I thank you sir!   :D ]]></description>
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				<link>http://kki.qorvis.com/forum/posts/list/40.page#207</link>
				<pubDate><![CDATA[Mon, April 23, 2007]]> GMT</pubDate>
				<author><![CDATA[ Samsdad]]></author>
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				<title>Re:Questions for Dr. Paul Law</title>
				<description><![CDATA[ Dr. Law do you have any figures or stats on the odds of having another child diagnosed with ASD if you already have a child on the spectrum? I have heard numbers anywhere from 4-40%. Also any stats on immediate family such as parents, couins, grandparentd, uncles, and aunts??]]></description>
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				<pubDate><![CDATA[Wed, May 9, 2007]]> GMT</pubDate>
				<author><![CDATA[ J&JMom]]></author>
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				<title>Re:Questions for Dr. Paul Law</title>
				<description><![CDATA[ Hi J&JMom.  To answer your question, we do know that siblings of children with ASDs have a risk of developing an ASD themselves higher than that of children in the general population.  The rate of autism in siblings of children with autism is usually given at somewhere between 3% and 6%.  This is a bit different than the recurrence risk (which is the risk to later-born children) that has been given as about 8.6%. (I'm taking these figures from a recent article, by the way: "Studying the Emergence of Autism Spectrum Disorders in High-Risk Infants: Methodological and Practical Issues," by Zwaigenbaum and colleagues, published online 2007 by the Journal of Autism and Developmental Disorders.)

What this means for those of us who are the parent of a child with an ASD is: we need to be aware that our other children might face some difficulties, too, and need to keep a close eye on their development and learning.  Many studies --and even some of our preliminary IAN data-- show that even those siblings who do not actually have an ASD still may experience other learning or speech problems. 

As for other relatives, I do not know the risk, there, but there is evidence that autistic traits do run in families. This collection of traits is called the <i>broad autism phenotype</i>.  There's a bit more about this on our website under "Insights from Genetics" at:  http://www.iancommunity.org/cs/understanding_research/insights_from_genetics

]]></description>
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				<pubDate><![CDATA[Thu, May 10, 2007]]> GMT</pubDate>
				<author><![CDATA[ Paul-IAN Director]]></author>
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				<title>Re:Questions for Dr. Paul Law</title>
				<description><![CDATA[ Thank you Dr. Law. I appreciate your information. I have two children, a brother in law, and a nephew on the spectrum. We also have a nice with dsylexia and a nephew with ADHD.]]></description>
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				<pubDate><![CDATA[Thu, May 10, 2007]]> GMT</pubDate>
				<author><![CDATA[ J&JMom]]></author>
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				<title>Re:Questions for Dr. Paul Law</title>
				<description><![CDATA[ I want to mention I did not fill out the pregnancy questions in the questionnaire because we are adoptive parents.  I have some information, but I would hesitate to answer the questions as if I were the biological mother.  At one point there is a place that asks whether we are biological or adoptive parents.  But then the pregnancy questions are still presented to me.]]></description>
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				<pubDate><![CDATA[Tue, May 15, 2007]]> GMT</pubDate>
				<author><![CDATA[ worriedmom]]></author>
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				<title>Re:Questions for Dr. Paul Law</title>
				<description><![CDATA[ Hello, worriedmom.  :-) 

To answer your question, an adoptive mom should answer the pregnancy questionnaire just as herself.  The first question is "How many times have you been pregnant?"  If you haven't had any biological children of your own, and you enter "0", the rest of the questionnaire will just disappear.

If you have biological children of your own, you will say how many, and then continue on to answer the questions.

What we don't have adoptive moms do is try to answer as if they were the bio mom (assuming they know something of the history).  For one thing, the bio mom has not consented to be part of the research study, so there is little information we are permitted to gather about her.

We do have a number of adoptive moms in IAN, by the way, and your data is just as valuable as that of the bio moms.  For one thing, it gives us an important comparison group --moms who are raising a child with autism but who have no genetic connection.  As we look at various issues in the families of kids with ASDs (like learning difficulties or depression or ADHD), having a group of parents who are not genetically linked, but do live with the stresses of raising a child with autism, is really important.]]></description>
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				<pubDate><![CDATA[Wed, May 16, 2007]]> GMT</pubDate>
				<author><![CDATA[ Paul-IAN Director]]></author>
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				<title>Re:Questions for Dr. Paul Law</title>
				<description><![CDATA[ Hi,
 I have a question about labels or diagnosis, we have heard everything , autism, asperger's, PDD-NOS, apraxia, etc. Then we discovered information about mercury (thimerosal) poisoning. Testing showed that my son was in fact, full of mercury. Through treatment for toxin removal, he has lost almost all of his autistic behaviors. Does that mean that he does not have autism, asperger's,etc.etc. He is receiving services through the school system under the label of autism, should I push for the school to change their policies to include "Mercury Poisoning" as a reason for services or just leave it as autism?
Sincerely,
   Jennifer]]></description>
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				<pubDate><![CDATA[Thu, May 17, 2007]]> GMT</pubDate>
				<author><![CDATA[ AARfan]]></author>
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				<title>Re:Questions for Dr. Paul Law</title>
				<description><![CDATA[ Hi AARfan.  Thank you for sharing your interesting story.  

Because of the nature of our project, we are not able to give medical, educational, or treatment advice in this forum.  To get the best education for your child, I recommend that you work with professionals in your area to get an accurate diagnosis that will help you get the services your child needs.

I hope you know that you are very welcome to join IAN Research, if you haven't already.  Children who recover from autism, and those that nearly do, are of enormous interest to researchers.  Their information is important to include in our data. 

In any case, I wish you and your son well. ]]></description>
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				<pubDate><![CDATA[Mon, May 21, 2007]]> GMT</pubDate>
				<author><![CDATA[ Paul-IAN Director]]></author>
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				<title>Re:Questions for Dr. Paul Law</title>
				<description><![CDATA[ Dr. Law,
The New York Times recently featured an excellent article on Autistic girls and how little research there is on this population of autistic children. Everyone knows that Autism is more prevalent in boys than girls. However, it seems as though when girls get it, it manifests itself differently. As the mother of an autistic girl, I feel that more research is needed in this area.  So my question is, Is the IAN Project planning on including more questions for the parents of girls in your next round of questions? 
Thank you so much for your time!
]]></description>
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				<pubDate><![CDATA[Sat, August 11, 2007]]> GMT</pubDate>
				<author><![CDATA[ Rebsmom]]></author>
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				<title>Re:Questions for Dr. Paul Law</title>
				<description><![CDATA[ Hello, Rebsmom.   :-) 

We hope very much that researchers will be able to use the IAN data and subject recruitment to learn more about girls with ASDs.  One way IAN can contribute to this important topic is by helping researchers <i>find </i>girls with ASDs.  Often, they are able to recruit so few that they either leave girls out of their studies, or can't draw very specific conclusions because the numbers were so small.

One problem, though, is the entire debate over whether girls with ASDs are underdiagnosed because they simply behave differently than boys do.  IAN can't help so much with that issue because un-diagnosed girls would not be taking part in IAN.

Still, we do have over 600 girls whose parents have completed the IAN questionnaires, and that is a place for researchers to start. I don't yet know if we'll have a separate questionnaire for girls.  Certainly, we will design all questionnaires to try to provide interesting information by gender.  (So, say we had a questionnaire that included a topic on special interests.  We would have to be careful not to just put trains or Pokemon or other more "male with ASD" special topic choices, but to include those that girls have been observed to choose, like horses or other animals.) 

If we find there are many issues specific to girls, however, I could see creating a "girls only" questionnaire.]]></description>
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				<pubDate><![CDATA[Mon, August 13, 2007]]> GMT</pubDate>
				<author><![CDATA[ Paul-IAN Director]]></author>
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				<title>Re:Questions for Dr. Paul Law</title>
				<description><![CDATA[ Dr. Law,
The report that just came out was very interesting! I would love to know state by state who is getting one-to-one assistants for their children on the spectrum. It seems to be that here in Florida, it is nearly impossible to get a 1:1, and if you do in my county at least, it is only for the children with Asperger's. I just think it would be interesting to see a breakdown of services received.

I also was wondering as far as the Depression in mothers of kids on the spectrum...I know people will laugh, because my whole group did when we talked about this, but did you ask if they were diagnosed before or after their child was diagnosed on the spectrum? Sort of a which came first, the chicken or the egg, so to speak.

Thanks for all you do! Keepfighting, I know I will!

Sharon
co-chair
Southwest Florida
Walk NOW for Autism ]]></description>
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				<pubDate><![CDATA[Mon, October 8, 2007]]> GMT</pubDate>
				<author><![CDATA[ fullhouse]]></author>
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				<title>Re:Questions for Dr. Paul Law</title>
				<description><![CDATA[ Hello Sharon, and welcome back.  :-) 

Looking at use of one-on-one aides by state is a terrific idea, and I will suggest to my team that we include such an analysis in our next Research Report.  (We haven't looked at this yet, but it should prove interesting.)

As for your questions about mothers and depression, we still don't know if depression runs in these families or is mostly situational, coming only after a child's ASD.  A Maternal Depression Questionnaire is in development, and will help us to determine when mothers experienced their first episode of depression --after the birth of their child with an ASD or years before.]]></description>
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				<pubDate><![CDATA[Tue, October 9, 2007]]> GMT</pubDate>
				<author><![CDATA[ Paul-IAN Director]]></author>
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				<title>Re:Questions for Dr. Paul Law</title>
				<description><![CDATA[ Dr Law,

Do you plan on having studies done with the 18+ crowd? I cannot participate in your studies now that my daughter has hit 18.

I would love to complete questionaires for her or see if I can have her do it for you.

Thank you
]]></description>
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				<pubDate><![CDATA[Mon, December 31, 2007]]> GMT</pubDate>
				<author><![CDATA[ Caro]]></author>
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				<title>Re:Questions for Dr. Paul Law</title>
				<description><![CDATA[ Caro, hi.  Yes, we are going to be including individuals age 18 and over in IAN.  We are working on an Adult with Autism Spectrum Disorder version of IAN.  It's a complex task, partly for legal reasons such as some adults with ASD are under guardianship and some are not, which means we need two separate consent processes. ("Consent" is when you give your permission to be included in a research study.)

In any case, we have heard from many, many people --adults with ASD and their parents and other supporters-- that adults want to be included in IAN, and we are working on it.  :-) 

Make sure to subscribe to the IAN Community e-newsletter, if you haven't already, because we'll certainly announce the Adult version of IAN there once it's all set.  We're hoping to have it ready sometime in 2008.]]></description>
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				<pubDate><![CDATA[Mon, December 31, 2007]]> GMT</pubDate>
				<author><![CDATA[ Paul-IAN Director]]></author>
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				<title>Re:Questions for Dr. Paul Law</title>
				<description><![CDATA[ Dr. Law,

I have registered my family with IAN and find many of the topics interesting and am encouraged by the ongoing research.  Both my children are adopted and not biologically related to one another.  As many of the research topics relate to potential genetic predispositions or correlations, I hesitate to participate for fear of skewing data.   

Are you aware of any ongoing research where the absence of genetic links between family members would be a benefit?  

Regards,

Eric
]]></description>
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				<pubDate><![CDATA[Thu, October 2, 2008]]> GMT</pubDate>
				<author><![CDATA[ Eric R]]></author>
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				<title>Re:Questions for Dr. Paul Law</title>
				<description><![CDATA[ Hi Eric R. :)

To answer your question, it is fine for adoptive parents to answer all the questions in IAN. Researchers analyzing our data will be able to tell which parents are adoptive and which are biological, and separate those out depending on what they are studying. For example, if you have a hypothesis about something genetic, you need to note this difference; if you are studying family stress, you don't. 

Actually, having information from adoptive parents can be very helpful as it offers another case - a case where people are in the same family and environment but don't share the same genes. That can be useful!

So I hope you will participate in IAN - we can definitely use your data, and will value it. :) Being part of IAN is also a way to become notified of other studies, as we serve as an autism research recruitment registry. Genetics researchers might not contact you, but other researchers would.]]></description>
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				<pubDate><![CDATA[Thu, October 2, 2008]]> GMT</pubDate>
				<author><![CDATA[ Paul-IAN Director]]></author>
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				<title>Re:Questions for Dr. Paul Law</title>
				<description><![CDATA[ Hi Dr. Law!  I was wondering what study you are talking about when you refer to the mother having Pitocin?  I had pre-mature rupture of membranes at 33 wks. was put on antibiotic's in case of infection and had my labor kicked in with pitocin after laying there 3 days.  I also had been givin progesteron suppositories during pregnancy to sustain and carry my son. he ended up weighing 4pnds. 11 oz and needed no oxygen. The doctor's said he was fine and the twitching he did was due to prematurity.  In march he was diagnosed with Autism and dev. delays and sensory processing disorder and etc. Is pitocin linked to Autism?  Thank you]]></description>
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				<pubDate><![CDATA[Thu, October 2, 2008]]> GMT</pubDate>
				<author><![CDATA[ blessedmom]]></author>
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				<title>Re:Questions for Dr. Paul Law</title>
				<description><![CDATA[ Hi blessedmom.  :D 

The hypothesis that the administration of pitocin during labor might be linked to autism in a child is fairly new. It has not been fully tested yet. See: http://www.ncbi.nlm.nih.gov/pubmed/15288368?dopt=abstract

One small study looked at this and found no evidence of an association between the use of pitocin and autism: http://www.ncbi.nlm.nih.gov/pubmed/12757361?dopt=abstract

(When you see the word "oxytocin" in these articles, keep in mind that pitocin is synthetic oxytocin. You can think of them as very similar things.)

We're working on a Pregnancy & Birth Questionnaire for IAN, and you can bet that we will include a question about induction of labor and the use of pitocin!]]></description>
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				<pubDate><![CDATA[Fri, October 3, 2008]]> GMT</pubDate>
				<author><![CDATA[ Paul-IAN Director]]></author>
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				<title>Re:Questions for Dr. Paul Law</title>
				<description><![CDATA[ Thank you Dr. Law!

I would be very interested in taking the Questionnaire when it is ready.  I think that in the end with everyone pulling together their stories and information of their children with Autism and etc. will eventually have a huge payoff.  I just hope and pray it is sooner rather than later.]]></description>
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				<pubDate><![CDATA[Sun, October 5, 2008]]> GMT</pubDate>
				<author><![CDATA[ blessedmom]]></author>
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				<title>Re:Questions for Dr. Paul Law</title>
				<description><![CDATA[ I just hope we can cure everyone of this idea that autism is a disease, myself.

I used to have severe issues with hygiene, socialization, self-injury, exclusion of anything not related to my current interests, and so forth.

I learned to deal with them and interact in a semi-normal manner, but just because I don't wear a diaper, pound my head on the floor, and can carry a decent conversation... doesn't mean I stopped being autistic.

Given the choice I'd much prefer to be filthy, rock in my chair, tap my feet while picking my nails, and babble endlessly about physics and mathematics... I learned to understand neurotypical people enough to see that they didn't "get" that part of me, and so I restrain it to various degrees.

I can not be cured of this, nor would I want to be, but I wish I had known what autism was when I was 6, and had educated adults to work with me back then, 23 years ago.]]></description>
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				<pubDate><![CDATA[Mon, February 22, 2010]]> GMT</pubDate>
				<author><![CDATA[ Max]]></author>
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				<title>Re:Questions for Dr. Paul Law</title>
				<description><![CDATA[ Hi Max. I often hear adults say exactly what you just said: If only people had understood about autism spectrum challenges when they were younger! Of course, there are still many people who don't "get" ASDs, but there are many more who do. I am thinking especially of certain teachers, therapists, and others who work with people with ASD and have gained a real sensitivity to the perspectives, challenges, and strengths of individuals on the spectrum. 

So many "high functioning" people went through school completely unidentified, misunderstood, and unhelped. In fact, we hear a lot about bullying and other miseries these people who were only diagnosed in adulthood faced as children. I can only hope there are far fewer individuals with ASD waiting so long for help or acceptance now.

You might be interested in an article on the very late diagnosis of Asperger's syndrome that we have on our site: http://www.iancommunity.org/cs/articles/very_late_diagnosis_of_asperger_syndrome]]></description>
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				<pubDate><![CDATA[Mon, February 22, 2010]]> GMT</pubDate>
				<author><![CDATA[ Dr. Paul A Law]]></author>
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				<title>Re:Questions for Dr. Paul Law</title>
				<description><![CDATA[ Dear Dr. Paul;

I distinctly recall filling out a number of questions regarding immunization for both autistic and non-autistic family members. Then, having scoured your statistical results pages, I found zero indication as to the findings. I subsequently emailed several people at IAN to obtain the results of this portion of the study. I was, however, either redirected to the statistical page (where the data is absent, or at least, it was the last time I checked) or I was met with complete silence. 

When will this data be released to the IAN Project participants? Why was it not included in your statistical findings to begin with? ]]></description>
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				<link>http://kki.qorvis.com/forum/posts/list/40.page#1922</link>
				<pubDate><![CDATA[Fri, March 19, 2010]]> GMT</pubDate>
				<author><![CDATA[ HappyFlappy]]></author>
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				<title>Re:Questions for Dr. Paul Law</title>
				<description><![CDATA[ Hi HappyFlappy. You are right! We hadn't posted the Vaccine Questionnaire in the Data Explorer and other stats functions of IAN Community yet. (We were going to wait until we were done collecting data, but we are done with that at this point.) I will have our technical person activate that today.

For our readers: If you'd like to explore the IAN Data by questionnaire -- which is flowing in from all the people around the U.S. answering our surveys -- go to the IAN Community home page and click on "Data Explorer" up at the top right.]]></description>
				<guid isPermaLink="true">http://kki.qorvis.com/forum/posts/list/40.page#1925</guid>
				<link>http://kki.qorvis.com/forum/posts/list/40.page#1925</link>
				<pubDate><![CDATA[Fri, March 19, 2010]]> GMT</pubDate>
				<author><![CDATA[ Dr. Paul A Law]]></author>
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				<title>Re:Questions for Dr. Paul Law</title>
				<description><![CDATA[ My son was diagnosed with aspergers about two years ago. After we were told that is what he has we were finally able to put a name to what was going on with our son. He has always been just our dakota since he was old enough to walk. He has had the symptoms of aspergers his whole life. He was diagnosed as adha, anxiety disorder, ocd and to many more to mention. Finally aspergers. This one fits him. He goes to a mental health center that  is state run. He is on his second Dr. The first one diagnosed him and now the second one he has seen twice now is telling me that aspergers being moved out as a diagnosis and he is no longer classifying him as such. He is now labled as haveing oppostional defiant disorder.I dont know what to do with that. He has no signs or symptoms of o.d.d. We are trying to find out what we should do. I feel like most of the reason that they changed his diagnosis is because I was told in the past that the center he goes doesnt treat aspergers. They have his diagnosis as o.d.d. listed first on his papers so he could be treated there and asperges as secondary. Should I agree to the o.d.d. or should I find somewhere else for him.]]></description>
				<guid isPermaLink="true">http://kki.qorvis.com/forum/posts/list/40.page#1930</guid>
				<link>http://kki.qorvis.com/forum/posts/list/40.page#1930</link>
				<pubDate><![CDATA[Sun, March 21, 2010]]> GMT</pubDate>
				<author><![CDATA[ danokenchey]]></author>
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				<title>Re:Questions for Dr. Paul Law</title>
				<description><![CDATA[ Hi danokenchey. :)

This sounds like a difficult situation with your son. Of course, I don't know you and your child, so I can't advise you here, but I can say this. The new edition of the Diagnostic and Statistical Manual (DSM) may remove Asperger's syndrome, but they intended to fold it in under a new, broader diagnosis called Autism Spectrum Disorders. My understanding is that the conditions we now call autism, PDD-NOS, or Asperger's will all be folded in together under the new Autism Spectrum Disorder. The people working on the new DSM say the reason for that is as follows:

1) A single spectrum better reflects the pathology and symptoms. 

2) Separation of ASD from typical development is reliable and valid, while separation of disorders within the spectrum is variable and inconsistent.
 
3) Individuals with autism, PDD-NOS, and Asperger disorder often are diagnosed by severity, rather than unique, separate criteria defining the three diagnoses.

See the write-up at the end of our latest research report:  http://www.iancommunity.org/cs/ian_research_reports/ian_research_report_13

The intent is not to take people with Asperger's and put them in other, non-ASD categories. Sometimes a person with an ASD also gets another diagnosis, like ADHD. Generally, they don't lose their ASD diagnosis altogether unless a mental health professional thinks they've made such incredible progress that they no longer qualify as having ASD, or perhaps believes that they were misdiagnosed and never had ASD.

If you feel uncomfortable with what any doctor or other expert is telling you, remember that it is OK to ask questions. You can ask how much experience the professional has working with high-functioning individuals on the autism spectrum. (Do they know Asperger's when they see it?) You can ask what the person is basing their diagnosis on, and explain what you have observed that makes you think an Asperger's diagnosis fits. It is also always OK to go and get a second opinion when you're not feeling confident in a professional's diagnosis, or even just when you want to be double-sure. 

For some other thoughts about this issue, listen to "Removal of Asperger's to Change Special Ed Access" on National Public Radio: http://www.npr.org/templates/story/story.php?storyId=123577220


]]></description>
				<guid isPermaLink="true">http://kki.qorvis.com/forum/posts/list/40.page#1934</guid>
				<link>http://kki.qorvis.com/forum/posts/list/40.page#1934</link>
				<pubDate><![CDATA[Mon, March 22, 2010]]> GMT</pubDate>
				<author><![CDATA[ Dr. Paul A Law]]></author>
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