Autism rates may be higher than thought

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Surfman
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09 May 2011, 7:44 am

Oh, but dont suggest anything to these poor souls. Its wrong to diagnose others. Only doctors can do that :roll:



Wallourdes
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09 May 2011, 9:07 am

aghogday wrote:
Wallourdes wrote:
Dr. Young Shin Kim is on the payroll of Autism Speaks (link)
Money is influence, thus I doubt the reliability of the research done.


Correct me if I'm wrong but the article states that Dr Young Shin Kim is an epidemiologist from the Yale Child Study Center that received a research grant from Autism Speaks; Autism Speaks funds all research with research grants that cover the expenses of the research. Technically Dr. Young Shin Kim is on the payroll of the Yale Child Study Center.


Indirectly he is on the payroll of Autism Speaks, since his research is funded by Autism Speaks if not initiated/suggested by Autism Speaks itself. I have a hard time to believe that they give money without asking something back for it in return, be it favourable results or otherwise.
To what I have experienced from Autism Speaks is that they are looking for arguments to their conclusions, not something that could contradict that.


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wavefreak58
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09 May 2011, 10:10 am

Wallourdes wrote:
aghogday wrote:
Wallourdes wrote:
Dr. Young Shin Kim is on the payroll of Autism Speaks (link)
Money is influence, thus I doubt the reliability of the research done.


Correct me if I'm wrong but the article states that Dr Young Shin Kim is an epidemiologist from the Yale Child Study Center that received a research grant from Autism Speaks; Autism Speaks funds all research with research grants that cover the expenses of the research. Technically Dr. Young Shin Kim is on the payroll of the Yale Child Study Center.


Indirectly he is on the payroll of Autism Speaks, since his research is funded by Autism Speaks if not initiated/suggested by Autism Speaks itself. I have a hard time to believe that they give money without asking something back for it in return, be it favourable results or otherwise.
To what I have experienced from Autism Speaks is that they are looking for arguments to their conclusions, not something that could contradict that.


Can you demonstrate any flaws in the research itself or are you dismissing it out of hand simply because of your perceptions of conflict of interest?

This is really the problem I have with the politicizing of the various organizations that support autism and autism research. It seems that there is little effort to clear the air and a huge pile of assumptions. Autism Speaks is not Satan incarnate. And ASAN is not the second coming of Christ. And I find it ironic how so much lip service is played to the "superior logic of the Aspie mind" when in fact Aspies are as fully engaged in irrationality as any NT.

I'm interested in what the research actually tells us. If there are flaws in the methodology, problems in the data analysis, or other issues with the research itself, I'd love to hear it. I have little to no interest in the games of recrimination that flow between the various points of view on just who advocates "correctly" for the autistic community.


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Wallourdes
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09 May 2011, 11:07 am

wavefreak58 wrote:
Wallourdes wrote:
aghogday wrote:
Wallourdes wrote:
Dr. Young Shin Kim is on the payroll of Autism Speaks (link)
Money is influence, thus I doubt the reliability of the research done.


Correct me if I'm wrong but the article states that Dr Young Shin Kim is an epidemiologist from the Yale Child Study Center that received a research grant from Autism Speaks; Autism Speaks funds all research with research grants that cover the expenses of the research. Technically Dr. Young Shin Kim is on the payroll of the Yale Child Study Center.


Indirectly he is on the payroll of Autism Speaks, since his research is funded by Autism Speaks if not initiated/suggested by Autism Speaks itself. I have a hard time to believe that they give money without asking something back for it in return, be it favourable results or otherwise.
To what I have experienced from Autism Speaks is that they are looking for arguments to their conclusions, not something that could contradict that.


Can you demonstrate any flaws in the research itself

Wallourdes wrote:
Ill be waiting for the peer reviews and reproductions of the made research, until that time I see it under suspicion.


or are you dismissing it out of hand simply because of your perceptions of conflict of interest?

Wallourdes wrote:
I'm not dismissing it nor accepting it, I'll keep this one parked under possibily biased research.


This is really the problem I have with the politicizing of the various organizations that support autism and autism research. It seems that there is little effort to clear the air and a huge pile of assumptions.

Wallourdes wrote:
No need to politicize those parties already gone political as lobbying parties.


Autism Speaks is not Satan incarnate. And ASAN is not the second coming of Christ.

Wallourdes wrote:
I never said either of the parties was that, I said Autism Speaks is already biased to begin with, so the results of 'research' is colored, selected or cherry picked to begin with - there is no conflicted broadcasting.
I have to little knowledge of ASAN to say something about them, but I won't be suprised if there is something to be said about them.


And I find it ironic how so much lip service is played to the "superior logic of the Aspie mind" when in fact Aspies are as fully engaged in irrationality as any NT.

Wallourdes wrote:
Don't forget, we're all human :lol:.


I'm interested in what the research actually tells us. If there are flaws in the methodology, problems in the data analysis, or other issues with the research itself, I'd love to hear it. I have little to no interest in the games of recrimination that flow between the various points of view on just who advocates "correctly" for the autistic community.

Wallourdes wrote:
I'm interested in the research results too, although I am worried the research is biased.
I'm not telling right and wrong, just being critical on the given news. Lots is lost between the lines.


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wavefreak58
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09 May 2011, 1:37 pm

Wallourdes wrote:
I'm interested in the research results too, although I am worried the research is biased.
I'm not telling right and wrong, just being critical on the given news. Lots is lost between the lines.


Don't get me wrong. I think we must always be aware of potential bias and corrupting factors in research. There is nothing about science that anoints a scientist against such things.

I'm not a worshiper of Autism Speaks. Something about their branding leaves me cold. A decidedly irrational assessment, but whatever. That said, they do fund some important research. That's not a trivial thing and I'm inclined to review research funded by them as I do any other research. I'll file it under "now that's interesting" and wait for it to be thoroughly vetted by the scientific community.

My first impression on the high incidence they found was that their criteria was too liberal. It seems there were moving too far into evidence of autistic traits and not looking at the amount of difficulty those traits are creating. If someone has adapted well then where is the disorder? On the flip side, I am exactly the type that would have benefited from appropriate intervention at an early age because I was fully able to meet academic challenges in grade school and was never a behavior problem. But by high school I was the poster boy for unmet expectations. Identifying autism masked by compensatory mechanisms would have been very helpful to me.


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aghogday
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09 May 2011, 1:45 pm

Wallourdes wrote:
aghogday wrote:
Wallourdes wrote:
Dr. Young Shin Kim is on the payroll of Autism Speaks (link)
Money is influence, thus I doubt the reliability of the research done.


Correct me if I'm wrong but the article states that Dr Young Shin Kim is an epidemiologist from the Yale Child Study Center that received a research grant from Autism Speaks; Autism Speaks funds all research with research grants that cover the expenses of the research. Technically Dr. Young Shin Kim is on the payroll of the Yale Child Study Center.


Indirectly he is on the payroll of Autism Speaks, since his research is funded by Autism Speaks if not initiated/suggested by Autism Speaks itself. I have a hard time to believe that they give money without asking something back for it in return, be it favourable results or otherwise.
To what I have experienced from Autism Speaks is that they are looking for arguments to their conclusions, not something that could contradict that.


The way Autism Speaks works is they set out a group of general guidelines each year, for grants worldwide that researchers compete for. Most research is funded by a number of sources other than Autism Speaks, and none of the research has ever been proven to be flawed based on bias toward an underlying agenda by Autism Speaks.

The guidelines for research are publically published on their website. That is the best place to go to form an opinion on whether or not one agrees that the potential research has promise for people with Autism. To me, objectively, much of it looks promising.

Much of the research is also funded by organizations such as the National Institute of Health. Participating in nefarious type activity would likely be the end of a researchers career. Research Scientists don't have anything to gain by doing bad science; the scientific method and peer review work to correct honest mistakes when they are made too.



mattlee
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09 May 2011, 3:56 pm

Interesting to hear the negative opinion of Autism Speaks.

Can someone elaborate point to an in-depth article discussing the pros & cons of the organization?



wavefreak58
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09 May 2011, 4:02 pm

mattlee wrote:
Interesting to hear the negative opinion of Autism Speaks.

Can someone elaborate point to an in-depth article discussing the pros & cons of the organization?


As in objective, fact based journalism?


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Dinosaw
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09 May 2011, 4:12 pm

aghogday wrote:
Participating in nefarious type activity would likely be the end of a researchers career. Research Scientists don't have anything to gain by doing bad science; the scientific method and peer review work to correct honest mistakes when they are made too.


How right you are. In an autism related vain, let us not forget the doctor in England that lost his license to practice because he appeared to have coerced the evidence to fit his assertion that there are connections between vaccines and the incidence of autism.

As you all know, there is no way to know that a researcher was biased or not except through peer review and further studying (replicating, etc.) of the results. One quote from the NY Times article is noteworthy:

This is a very impressive study,” said Lisa Croen, director of the autism research program at Kaiser-Permanente Northern California, who was not connected with the new report. “They did a careful job and in a part of the world where autism has not been well documented in the past.”


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09 May 2011, 4:30 pm

mattlee wrote:
Interesting to hear the negative opinion of Autism Speaks.

Can someone elaborate point to an in-depth article discussing the pros & cons of the organization?


Here? Unlikely. Most people seem to hate Autism Speaks with a passion.

For the record, I'm no different. And a lot of my hatred comes from facts that I'm not biased about (salary, lies, lawsuits, etc, all of which can be found on the Whose Planet Is It Anyway blog)


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09 May 2011, 4:55 pm

wavefreak58 wrote:
I'm interested in what the research actually tells us. If there are flaws in the methodology, problems in the data analysis, or other issues with the research itself, I'd love to hear it. I have little to no interest in the games of recrimination that flow between the various points of view on just who advocates "correctly" for the autistic community.


The research needs to be validated, but I wouldn't be surprised if it were accurate.

I have no issues with the research, and I do not have issues with Autism Speaks using the research to get more funding. It is rather frustrating that the funding will not actually primarily go to the benefit of living autistic people.

Also, while Autism Speaks does have one autistic person with them, they've been heavily criticized for advocating for or perhaps over autistic people without including autistic people. Or as some disability activists say, "nothing about us without us."



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09 May 2011, 5:05 pm

wavefreak58 wrote:
My first impression on the high incidence they found was that their criteria was too liberal. It seems there were moving too far into evidence of autistic traits and not looking at the amount of difficulty those traits are creating. If someone has adapted well then where is the disorder? On the flip side, I am exactly the type that would have benefited from appropriate intervention at an early age because I was fully able to meet academic challenges in grade school and was never a behavior problem. But by high school I was the poster boy for unmet expectations. Identifying autism masked by compensatory mechanisms would have been very helpful to me.


This is entirely plausible. They didn't really describe any impairments for those children. It may be that they only need mild interventions at best.



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03 Jun 2011, 10:07 pm

It doesn't bother me if they look for broader AS traits not just impairment- impairment can depend on the context (culture, circumstance, opportunity etc.) the person's in. Also, if somebody has relatively easy sailing, then hits a rough spot/experience autistic burnout/ "regresses", then showing evidence the person is autistic/ has autistic traits can help shed light on the situation. Making visible relatively non-impaired autistics helps emphasize a spectrum non-disease model of autism. However, I wonder how many questions might be based on misconceptions.

Quote:
It asks such questions as whether the child "stands out as different" in a number of ways, including lacking empathy

-http://www.msnbc.msn.com/id/42949599/ns/health-kids_and_parenting/t/south-korean-study-finds-children-has-autism-traits/

I get why kids may seem non-empathetic to parents. Some biographies suggests some autistic people empathize differently/in different ways, and and not understanding a social situation, or flat affect, or difficulty/difference expressing emotion can give this appearance too. So a check mark on "lack of empathy" might indicate an autistic kid even though it may not exactly be accurate - I don't think there's a pervasive lack of empathy in autism. But still, I don't know if that question reflects researcher's perceptions or what they would anticipate parents perception of this in autistic kids.

Much ado about one question I suppose, but I don't know how many questions might have similar misconceptions.