Congressional Hearing on the Federal Response to Autism on C-Span - Page 2 - Mothering Forums

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#31 of 81 Old 12-04-2012, 07:50 AM - Thread Starter
 
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Huge Internal Fight in Autism Community

 

Here is Tim Bolen telling it like it really is.

 

 

 

 

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Let's look at the thing from over here on the periphery, where we can see the whole picture.  When we do that something very ugly emerges.

 

Very ugly.

 

Let's start with who it was that the Congressional committee SELECTED to represent what they see as Autism.  There were six speakers picked by the committee to "represent" Autism, half of which claimed to represent the Asperger Syndrome portion of the Autism Spectrum, indicating to any member of the public, or of Congress, watching, that Aspergers was, in fact, what Autism was all about. 

Worse - The version of Aspergers depicted was absolutely despicable.

 


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#32 of 81 Old 12-04-2012, 08:54 AM
 
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Another article on the hearing, by J.B. Handley

The Unbearable Wimpiness of Being Autsim Speaks' Bob Wright

Wow, that article was....ugly. Even Katie Wright show up in the comments taking issue with what was written about her father.
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#33 of 81 Old 12-04-2012, 12:03 PM
 
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Wow, that article was....ugly. Even Katie Wright show up in the comments taking issue with what was written about her father.

 

Did I miss something? The only comment of hers I could find was:


 

 

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What's the deal with the Wrights? For many years we heard they have no control over the charity they started for their grandson, yet Bob Wright gets a seat at the table for the most important congressional hearing ever...Powerless or powerful?

Autism Speaks makes me sick.

 

But apparently even he doesn't deny the possibility of a connection between vaccines and autism, at least in private.


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#34 of 81 Old 12-04-2012, 12:33 PM - Thread Starter
 
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Did I miss something? The only comment of hers I could find was:


 

 

Quote:

What's the deal with the Wrights? For many years we heard they have no control over the charity they started for their grandson, yet Bob Wright gets a seat at the table for the most important congressional hearing ever...Powerless or powerful?

Autism Speaks makes me sick.

 

But apparently even he doesn't deny the possibility of a connection between vaccines and autism, at least in private.

The name of the poster is underneath their post, so you quoted the post below Katie's.

 

 

Here it is:

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I don't think this kind of attack is fair.
If you listen to what my Dad actually says almost everyone in our community would agree with it. He and Mark clearly argued that there is no vaccine safety program in place.
The ASA guy said he loved working with the CDC!
I guarantee you GE has no influence on my Dad's work with AS. I don't think GE, in facts,
donates $ or participates in any way.
Bob Wright does not run AS. [snipped to adhear to copyright guidlines]

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#35 of 81 Old 12-04-2012, 12:52 PM
 
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D'oh! That's what I get for using the search function in Chrome. I just didn't want to wade through all the comments. 

 

But I agree with another comment that points out she's in a difficult position with all of this.


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#36 of 81 Old 12-05-2012, 01:31 PM
 
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bumping….

 

Does anyone know if they have any next steps?  Committees forming, studies commissioned, etc?


There is a battle of two wolves inside us.  One is good and the other is evil.  The wolf that wins is the one you feed.

 

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#37 of 81 Old 12-11-2012, 06:42 AM
 
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I thought this was an interesting read, from a non-vax perspective, on the congressional hearing.  It is essentially an outline of what one person saw while watching the c-span: "the awesome, the ignorant and the outright lies." 

 

http://vactruth.com/2012/12/04/congressional-hearing-on-autism/


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#38 of 81 Old 12-11-2012, 10:17 AM
 
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I think the liklihood is that there will not be many next steps.  We are in the lame duck congress and the congressmen pressing this issue is Dan Burton who retired and will no longer be in congress in January.   It is not likely a new congressmen will pick up where Burton left off because of some of the political associations that would cause them.

 

I must say having read through transcripts I am VERY dissapointed in the congressional hearings.  They were billed as a hearing on the federal response to autism.  but that isn't what it was at all.  Pretty much the only aspect they looked at was a vaccine/autism connection.  Even if I believed that a connection exists (which admittingly I personally don't) it cannot be 100% of the cause of Autism.  I think that this hearing is really doing no service to autism research nor really looking at the federal response.  It just rehashing the vaccines/autism.  It should be billed as an investigation into vaccines causing autism or the federal hearings on vaccines being problematic.  Not the federal response to Autism. 

 

If we hope to make progress in the autism epidemic we cannot get suck go over and back over the vaccine connection and not looking at anything else.

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#39 of 81 Old 12-11-2012, 10:59 AM
 
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I think you're right DC. I'll take notice when action is taken.

 

This kind of reminds me of the congressional hearing in Pat Tillman's death. Lots of hot air, finger-pointing and apologies, but nothing came of it leaving the family with nothing. 

 

Latest Congressional hearing only adds to Tillman family frustration


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#40 of 81 Old 12-11-2012, 11:20 AM
 
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I think the liklihood is that there will not be many next steps.  We are in the lame duck congress and the congressmen pressing this issue is Dan Burton who retired and will no longer be in congress in January.   It is not likely a new congressmen will pick up where Burton left off because of some of the political associations that would cause them.

 

I must say having read through transcripts I am VERY dissapointed in the congressional hearings.  They were billed as a hearing on the federal response to autism.  but that isn't what it was at all.  Pretty much the only aspect they looked at was a vaccine/autism connection.  Even if I believed that a connection exists (which admittingly I personally don't) it cannot be 100% of the cause of Autism.  I think that this hearing is really doing no service to autism research nor really looking at the federal response.  It just rehashing the vaccines/autism.  It should be billed as an investigation into vaccines causing autism or the federal hearings on vaccines being problematic.  Not the federal response to Autism. 

 

If we hope to make progress in the autism epidemic we cannot get suck go over and back over the vaccine connection and not looking at anything else.

 

It wasn't a rehashing; it was exposing the fact that an FDA cover-up had taken place, which changes everything.

 

No environmental cause (such as parental age, proximity to highway, mothers who have celiac, etc) has been shown to have a potentially greater effect on the autism rate, and, in fact, most of those can be seen as related to vaccines anyway.  

 

Older parents are more likely to take their babies in for well-child visits, and would be more likely to adhere to the recommended vaccine schedule.

 

Parents who live closer to highways are less likely to live in inner-city neighborhoods, and are more likely to have stable jobs.  This also makes them more likely to bring their child in for scheduled well-child/vaccine visits.

 

The children of mothers with celiac disease are more likely to be vitamin-deficient, and therefore more likely to have vaccine reactions, particularly if they are D-deficient.  In addition, children with autism have a high rate of bowel disorders, especially including celiac disease.

 

If we hope to make progress in the autism epidemic, the truth about the government's role in covering up vaccine reactions has to come out.  We can't move forward if lies are allowed to remain presented as truth.

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#41 of 81 Old 12-11-2012, 12:01 PM
 
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If we hope to make progress in the autism epidemic we cannot get suck go over and back over the vaccine connection and not looking at anything else.

 

If you believe there is an autism epidemic and that real autism numbers have been growing, it makes sense to focus on causes.  

 

Autism can be horrible.  I could go on and on on the many ways it can be horrible.  It might be *ok* (as in : not worthy of changing) for high functioning autistic people, but they are hardly the only people on the spectrum.

 

Treatment for autism is very problematic. Many therapies are not very effective.  Many are very pricey. The best mainstream science thinks we have is ABA which only works for some kids, if it started early enough (which is not the majority of kids) , and it is very pricey.  

 

Prevention, in my mind, hold more possibilities than treatment.  Prevention is always better that treatment.  

 

I do not think (at all!) that all resources in autism research should go towards looking for causes, but some should.  I think more should go towards looking at environmental causes as very little money is spent looking at environmental causes, despite the fact many scientist do believe there is an environmental component to autism.  I also favour environmental causes, because in some ways they seem easier to avoid.  Genes are genes and short of not procreating, there is not much you can do….avoiding a anti-depressent in pregnancy is something you can do.  


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#42 of 81 Old 12-11-2012, 12:36 PM
 
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I don't think dakotacakes is arguing against looking at environment causes, just against looking at the same environmental cause over and over even when it's been found over and over not to be associated with autism.

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I also think we should be looking for causes in addition to treatment.  But that also wasn't done in these hearings.  They weren't looking at "causes of autism".  These hearings were not about the increase on autism.  they were about the theory that vaccines cause autism.  I just think it was disingenious to call it a hearing on the federal response to autism when in reality it was on a very small section regarding vaccines and autism correlation.  And to be honest the discussion online (not here on mothering but elsewhere) has centered more on problems with vaccination than anything to do with autism.

 

I support looking for genetic AND enviornmental causes.  I also support looking at ALL enviornmental causes.  What I do not support is getting stuck on vaccines cause autism and avoiding disucssion of all of the other issues that surround autism causation and treatment that could have been discussed during these hearings.  To be honest, I wish that vaccines were the cause of autism because that is an easy fix, and I think that some want an easy fix so it is easy to get stuck on vaccines cause autism.  But that is a huge oversimplification and vaccines cannot cause even a majority of autism cases let alone all of them.  And I believe a hearing on autism should therefore cover more than this.

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ITo be honest, I wish that vaccines were the cause of autism because that is an easy fix, and I think that some want an easy fix so it is easy to get stuck on vaccines cause autism.  But that is a huge oversimplification and vaccines cannot cause even a majority of autism cases let alone all of them.  And I believe a hearing on autism should therefore cover more than this.

I think that's very insightful.
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I also think we should be looking for causes in addition to treatment.  But that also wasn't done in these hearings.  They weren't looking at "causes of autism".  These hearings were not about the increase on autism.  they were about the theory that vaccines cause autism.  I just think it was disingenious to call it a hearing on the federal response to autism when in reality it was on a very small section regarding vaccines and autism correlation.

 

I pretty much agree with you, as the hearing was on the Federal response to rising rates of autism.  As such, I would expect a decent portion of the discussion to centre around why rates are rising, but I would not expect it to only centre on vaccines.  

 

To be honest, I wish that vaccines were the cause of autism because that is an easy fix, and I think that some want an easy fix so it is easy to get stuck on vaccines cause autism. 

 

I think some people "get stuck on" vaccines because that is what they have seen with their own eyes. wink1.gif  

 

I do think people want an easy fix! Wouldn't that be great?   I don't think vaccines are an easy fix, however. How long have vaccine debates been raging with regards to autism - 10 years?  15?  Yet we are still here.  Moreover, even if vaccines were conclusively found to contribute to the autism rate - what would people do? Suddenly stop vaxxing?  I doubt it - there is too much vested interest, as well as belief, in the value of vaxxing.


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#46 of 81 Old 12-11-2012, 06:22 PM
 
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I think some people "get stuck on" vaccines because that is what they have seen with their own eyes. wink1.gif  

 

I do think people want an easy fix! Wouldn't that be great?   I don't think vaccines are an easy fix, however. How long have vaccine debates been raging with regards to autism - 10 years?  15?  Yet we are still here.  Moreover, even if vaccines were conclusively found to contribute to the autism rate - what would people do? Suddenly stop vaxxing?  I doubt it - there is too much vested interest, as well as belief, in the value of vaxxing.

 

 

I completely disagree.  When vaccines have been conclusively linked to serious adverse events they have been yanked from the market.  If vaccines were conclusively linked to the autism epidemic the vaccine program as we know it would change drastically.

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I think that's very insightful.

I don't.  I think it's condescending and dismissive.  Instead of recognizing that vaccines have caused autoimmune and encephalopathic reactions that have resulted in brain damage, that attitude pretends that the parents of those who have suffered such reactions are just looking for something to blame.

 

It also completely ignores evidence of cover-ups, from the vaccine manufacturers themselves to the FDA.

 

 

Originally Posted by Rrrrrachel View Post

I don't think dakotacakes is arguing against looking at environment causes, just against looking at the same environmental cause over and over even when it's been found over and over not to be associated with autism.

 

The industry-funded studies that purport to dismiss a vaccine-autism link were severely flawed, while other, independent studies did indeed find vaccine-autism link.   See www.14studies.org for a thorough discussion.

 

Pretending that that the issue has been thoroughly studied and then using that as an excuse to avoid looking at the truth won't work any more.  

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I completely disagree.  When vaccines have been conclusively linked to serious adverse events they have been yanked from the market.  If vaccines were conclusively linked to the autism epidemic the vaccine program as we know it would change drastically.

If we look at how the medical community is handling research  that shows anti-depressents in pregnancy are linked to autism, we can see that this is not true.  There is good evidence SSRI's are linked to autism, and yet there does not seem to be much cautioning people against anti-depressents in pregnancy.  Indeed, the articles I have read (such as the one below) have been rather dismissive -  saying the odds of having a child with autism "only" slips from 99 to 98 or 97%.  This is huge.  99% means 1 in a hundred, 97% is 1/33.  

 

http://www.drgreene.com/blog/2011/07/07/autism-linked-prenatal-prozac-paxil-and-zoloft

 

 

"Autism of some kind is now diagnosed in about 1% of kids (or perhaps between 1% and 2%). Doubling 1% would take this to 2%, tripling to 3%. Looking at these same numbers the other way, in general there is about a 99% chance of having a child never diagnosed with any type of autism. For those taking antidepressants, if this link proves true the odds may slip slightly to 98% or 97% -- important, but not a cause to make rash decisions.

While the data suggests that prenatal antidepressant use and having a child with autism happen together a bit more frequently, it doesn’t prove the medicines are the cause."

 

 

 

 


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If we look at how the medical community is handling research  that shows anti-depressents in pregnancy are linked to autism, we can see that this is not true.  There is good evidence SSRI's are linked to autism, and yet there does not seem to be much cautioning people against anti-depressents in pregnancy.  Indeed, the articles I have read (such as the one below) have been rather dismissive -  saying the odds of having a child with autism "only" slips from 99 to 98 or 97%.  This is huge.  99% means 1 in a hundred, 97% is 1/33.

 

This math is incorrect.  99% is 99 of 100, 97% is 97 of 100, 3% is 3 of 100, and 1% is 1 of 100.


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#50 of 81 Old 12-12-2012, 04:37 AM
 
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This math is incorrect.  99% is 99 of 100, 97% is 97 of 100, 33.3% is 1 of 33, 3% is 3 of 100, and 1% is 1 of 100.

Thank you for posting that. Beat me to it.

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And a drug is completely different than a vaccine and held to a very different safety standard.
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This math is incorrect.  99% is 99 of 100, 97% is 97 of 100, 33.3% is 1 of 33, 3% is 3 of 100, and 1% is 1 of 100.

 

 Actually she was right - just explained it a bit oddly - she meant that 99% chance of not getting autism means 1% chance of getting it. 1% is 1/100. If that changes to 97% chance of not getting  autism, its a 3% chance of getting it. And 3% is 3/100 or 1/33.

 

 How easy to determine are these numbers though?  

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#53 of 81 Old 12-12-2012, 05:16 AM
 
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 Actually she was right - just explained it a bit oddly - she meant that 99% chance of not getting autism means 1% chance of getting it. 1% is 1/100. If that changes to 97% chance of not getting  autism, its a 3% chance of getting it. And 3% is 3/100 or 1/33.

 

 How easy to determine are these numbers though?  

Oddly or not, they just jumped to "she is wrong".   3% is equal to 1/33.33333   It is basic math.

 

Ohhhh….

 

1/100 = 1/100

2/100= 1/50

3/100 = 1/33.3333...

4/100  = 1/25

 

and so on.


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Okay, thanks.


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#55 of 81 Old 12-12-2012, 05:22 AM
 
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And a drug is completely different than a vaccine and held to a very different safety standard.

 

 

A vaccine is a drug - it is a biologic drug.  
 
Autism is pretty damn serious, yet messages around anti-depressants and autism seem wishy-washy.
 
It could be  the study is preliminary, but I still find the language that has been used in both the study and articles I have seen quite dismissive, and cautioning us not to do anything rash (g-d forbid we do not want their drugs).
 A jump from 1-3% for autism is huge (if it turns out to be correct) and I do not see people acknowledging that.

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#56 of 81 Old 12-12-2012, 05:27 AM
 
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 Actually she was right - just explained it a bit oddly - she meant that 99% chance of not getting autism means 1% chance of getting it. 1% is 1/100. If that changes to 97% chance of not getting  autism, its a 3% chance of getting it. And 3% is 3/100 or 1/33.

 

 How easy to determine are these numbers though?  

Are you referring to the info around anti-depressants and autism?

 

The study:

http://archpsyc.jamanetwork.com/article.aspx?articleid=1107329

 

Results:

 

"Prenatal exposure to antidepressant medications was reported for 20 case children (6.7%) and 50 control children (3.3%). In adjusted logistic regression models, we found a 2-fold increased risk of ASD associated with treatment with selective serotonin reuptake inhibitors by the mother during the year before delivery (adjusted odds ratio, 2.2 [95% confidence interval, 1.2-4.3]), with the strongest effect associated with treatment during the first trimester (adjusted odds ratio, 3.8 [95% confidence interval, 1.8-7.8]). No increase in risk was found for mothers with a history of mental health treatment in the absence of prenatal exposure to selective serotonin reuptake inhibitors."


There is a battle of two wolves inside us.  One is good and the other is evil.  The wolf that wins is the one you feed.

 

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#57 of 81 Old 12-12-2012, 05:56 AM
 
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You know what else is serious? Depression. In glad they're being cautious and not having women go of their medication based on a preliminary study. It would be completely different with a vaccine, though. Since they're given to healthy people they are held to a completely different safety standard than a drug that is used to treat a medical condition.
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#58 of 81 Old 12-12-2012, 06:02 AM
 
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If we look at how the medical community is handling research  that shows anti-depressents in pregnancy are linked to autism, we can see that this is not true.  There is good evidence SSRI's are linked to autism, and yet there does not seem to be much cautioning people against anti-depressents in pregnancy.  Indeed, the articles I have read (such as the one below) have been rather dismissive -  saying the odds of having a child with autism "only" slips from 99 to 98 or 97%.  This is huge.  99% means 1 in a hundred, 97% is 1/33.  

http://www.drgreene.com/blog/2011/07/07/autism-linked-prenatal-prozac-paxil-and-zoloft


"Autism of some kind is now diagnosed in about 1% of kids (or perhaps between 1% and 2%). Doubling 1% would take this to 2%, tripling to 3%. Looking at these same numbers the other way, in general there is about a 99% chance of having a child never diagnosed with any type of autism. For those taking antidepressants, if this link proves true the odds may slip slightly to 98% or 97% -- important, but not a cause to make rash decisions.



While the data suggests that prenatal antidepressant use and having a child with autism happen together a bit more frequently, it doesn’t prove the medicines are the cause."



 



 



 



 



Is that what you consider good evidence? A pilot study with 20 cases? What response do you expect from the medical community? Do you expect them to pull all depressed expectant moms off of SSRIs based on a pilot study?

The only, only conclusion that can be drawn from that study is the more research is warranted. Good thing that's being done (see clinical trials.gov for a list)
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#59 of 81 Old 12-12-2012, 06:10 AM
 
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You know what else is serious? Depression. In glad they're being cautious and not having women go of their medication based on a preliminary study. It would be completely different with a vaccine, though. Since they're given to healthy people they are held to a completely different safety standard than a drug that is used to treat a medical condition.

Yeah, depression is serious….

 

I said the study might be preliminary (and I think it is)…but it also seems pretty solid.

 

I know this is OT. but if anyone has any solid criticism of the study, I would be all ears...

 

I personally would not go on anti-depressants at this point in time if I were pregnant.

 

I am not willing to increase (fairly substantially) the chances of my child having autism while the powers that be sort this out. 

 

I would figure out a way to get my depression under control without drugs, or I would not get pregnant.  A 1/33 risk is too high for me.

_______

 

also OT, but I wonder if the drug inserts for SSRI warn people of the increase, preferably in plain and not leading language….

 

Very preliminary glance at Zoloft insert……no mention is made of increase in chances of autism when pregnant hopmad.gif


There is a battle of two wolves inside us.  One is good and the other is evil.  The wolf that wins is the one you feed.

 

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#60 of 81 Old 12-12-2012, 06:19 AM
 
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Is that what you consider good evidence? A pilot study with 20 cases? What response do you expect from the medical community? Do you expect them to pull all depressed expectant moms off of SSRIs based on a pilot study?
The only, only conclusion that can be drawn from that study is the more research is warranted. Good thing that's being done (see clinical trials.gov for a list)

 

from the study:

 

"A total of 298 case children with ASD (and their mothers) and 1507 randomly selected control children (and their mothers) drawn from the membership of the Kaiser Permanente Medical Care Program in Northern California."

 

In any event, I agree with the bolded.

 

I also think it is prudent to abstain from anti-depressants during pregnancy while they sort this out.

 

I also think it is prudent and ethical for medical advisors to let people know of this study (including that it is preliminary) in non-leading language, so they can decide for themselves. 


There is a battle of two wolves inside us.  One is good and the other is evil.  The wolf that wins is the one you feed.

 

Book and herb loving mama to 1 preteen and 2 teens (when did that happen?).  We travel, go to school, homeschool, live rurally, eat our veggies, spend too much time...

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