http://www.nyfac.org/
Another egregious site. they doing a kick off event with the CDC !!
they have Bernard Rimland on their board. I have heard some negative comments about him. I know he is a "hero" to parents for getting rid of that bettelheim nonsense.
http://www.nyfac.org/
Another egregious site. they doing a kick off event with the CDC !!
they have Bernard Rimland on their board. I have heard some negative comments about him. I know he is a "hero" to parents for getting rid of that bettelheim nonsense.
Well, Dr Rimland is on a couple of boards I am on so I must be evil too 
He is a mixed blessing for sure; part hero and part charlatan.
NYFAC has been around for a while. Impresses me as a NY imitation of COSAC.
Jerry Newport
Well, Dr Rimland is on a couple of boards I am on so I must be evil too
He is a mixed blessing for sure; part hero and part charlatan.
Jerry Newport
Jerry
you are not evil!! neither is carley. I would never say that. Stephen shore is not evil just self serving. I just see that a lot of autistics who have achieved a modicum of acknowledgement from NTs dont want to rock the boat. they might want to say they are anti-cure but dont press in fear of losing status. which is seems to me very NT like. (not referring to you) I guess you took some of mine grasp comments to heart. you should nt
Well, Dr Rimland is on a couple of boards I am on so I must be evil too
He is a mixed blessing for sure; part hero and part charlatan.
Jerry Newport
Jerry
you are not evil!! neither is carley. I would never say that. Stephen shore is not evil just self serving.
Jerry: I agree but I have to wonder if I would be any different if I didn't live as cheaply as I can in Arizona!!
I just see that a lot of autistics who have achieved a modicum of acknowledgement from NTs dont want to rock the boat. they might want to say they are anti-cure but dont press in fear of losing status. which is seems to me very NT like. (not referring to you) I guess you took some of mine grasp comments to heart. you should nt
I was just kidding you about the mention of Rimland.
Jerry
Rimland's methodology doesn't impress the medical researchers at the Cochrane Collaboration;
http://www.update-software.com/Abstracts/ab003681.htm
The Cochrane Collaboration is an international organisation with unequalled credibility in the medical science community that does systematic reviews of research studies.
Rimland's methodology doesn't impress the medical researchers at the Cochrane Collaboration;
http://www.update-software.com/Abstracts/ab003681.htm
The Cochrane Collaboration is an international organisation with unequalled credibility in the medical science community that does systematic reviews of research studies.
That is an extremely vague reference to Rimland. AIT is not his methodology. It is just one of countless approaches he has written about in his newsletter. Not to say that Bernie is infallible but you can come up with better examples than this. My favorite is the way he completely oversold secretin back in 1998.
Jerry Newport
Do you mean actually was selling it, or selling the idea?
Jerry, I know more about evidence-based medicine than I know about Mr Rimland, so that's why I cited that link. When I referred to Rimland's methodology I was referring to the way he analysed the study data, not the method or theory of the "therapy". I don't doubt that you are right that the secretin debacle is a worse example of bad science than the stuff I cited. Did any credible research study anywhere ever find any value at all in secretin as a "therapy" or a "cure"?
The "COCHRANE DEVELOPMENTAL, PSYCHOSOCIAL AND LEARNING PROBLEMS GROUP" have a protocol for "Intravenous secretin for autism spectrum disorder". It will be interesting to see the results of their review, if they ever finish it.
http://www.update-software.com/Abstracts...tIndex.htm
[quote="Lili Marlene"]Jerry, I know more about evidence-based medicine than I know about Mr Rimland, so that's why I cited that link. When I referred to Rimland's methodology I was referring to the way he analysed the study data, not the method or theory of the "therapy". I don't doubt that you are right that the secretin debacle is a worse example of bad science than the stuff I cited. Did any credible research study anywhere ever find any value at all in secretin as a "therapy" or a "cure"?
Jerry: No. Even Reflagen, the company that was making secretin, gave up on it. The wife of the head of that company used to show up at the LADDERS convention, acting like she was GOD but I haven't seen her in a few years
Jerry Newport
I'm sure that secretin fad was did wonders for the finances and social standing of some people who stood to benefit. But all good fads must come to an end (to be replaced by some new fad).
Wait a minute. Why, specifically, is the NYFAC website egregious?
As a site, it's pretty incomplete, but among the other autism websites I've seen, it hardly stands out. Plus, it's geared towards parents with small children who do have different needs than adults do.
I certainly haven't gotten the "We Must Make Our Child As Normal As Possible" vibe that I've found on other websites. It just doesn't bring anything new to the table.
And BTW, I've seen Spotlight Autism on local cable (which wasn't bad, just didn't bring anything new to the table, and certainly a LOT less exploitative than the typical tv newsmagazine story about autism) and I've tried to call NYFAC. Their phone number is disconnected.
So, as an organization, they have their head up their ass, but what specifically makes it bad? Perhaps I'm missing something. Please educate me.