Tuesday, August 17, 2010

Ari Ne'eman at the IACC Meeting

As many of you are no doubt aware, earlier this year Ari Ne'eman was nominated to serve on the National Council on Disability. At the time, I said that I thought it was a bad idea. Then, out of the blue, his nomination was put on hold for some reason.

I hoped that the hold was because someone had come to their senses and realized that Mr. Ne'eman was not a good person to represent the needs of people with autism.  But my hopes were soon utterly crushed when not only was his nomination to the National Council approved, but he was also appointed to serve on the Interagency Autism Coordinating Committee (IACC).

Well, what's done is done and Mr. Ne'eman's appointments are going to run for a couple of years. Hopefully during that time he will be able to grow to become someone who truly represents the needs of everybody on the spectrum - including the silent majority who are unable to speak for themselves.

But given some recent events, I am not going to hold my breath.

As I was watching the videocast of the most recent IACC meeting, I ran into a prime example of exactly why Mr. Ne'eman is not qualified to serve on the IACC or the NCD. The transcript of the meeting is not yet available, but if you look at the video, starting at about 40:00 you can witness Mr. Ne'eman displaying his maturity.  Or, alternatively, you can read my transcription of the exchange below.

Just as background, at this point in the video, Michael Ganz, Ph.D. has just finished giving a presentation on the costs of autism in the United States. If you don't want to watch the presentation (it is interesting), let me just summarize it by saying autism = expensive.

Ari Ne'eman : Thank you. I appreciate your presenting on this in so far as you work can help improve access to services, I think we can support it. I want to sort of drill down into this concept of indirect costs you put forward connected to what I think you referred to in your presentation as the value of prevention. You know, I wonder if you couldn't speak to some of the ethical implications here. I mean, correct me if I am wrong but isn't what you are saying here essentially these people are expense, we have calculated exactly how expensive they are, now, let's save that money by preventing them from existing? How would you distinguish your views from the views from of, say, the eugenics movement of the 20th century which did a very similar thing.

Michael Ganz, Ph.D : I don't want to insult anybody but I think that's a ridiculous statement. The point of this work is to point out the lost opportunity costs associated with people who have a health condition that hopefully can be prevented and I am not meaning that the folks should be prevented from being born. I mean that they should be prevented from experiencing that condition. Just like there is tons of literature on the costs associated with depression, with breast cancer, with over active bladder, it doesn't mean we want to prevent people from being born who might have over active bladder, we just mean that's the cost the associated opportunity cost, those costs can be going to something else like playgrounds --

Ari Ne'eman : What about in the example of say downs syndrome that is the example in which you see very high rates of prenatal termination fetuses that test positive for downs syndrome. Now, according to your methodology, does that result in a net economic benefit for society. You know does that represent part of the value of prevention?

Michael Ganz, Ph.D : It might but I am not -- I really don't -- well let's point it this way that's not the perspective I am coming from, I am coming from the perspective a person is born, again with a condition and can we treat it and what would you save if you treated it. That's -- I think that reading too much into this from an ethical standpoint, certainly people are going to do that but that's not what I set out to do. I set out to do an accounting exercise --

Ari Ne'eman : Let me say it a different way...

(Thomas Insel, the director of the National Institute of Mental Health and Chair of the IACC interrupts at this point and steers the conversation back into grown up land).

If you watch the video, you can see Mr. Ne'eman ask - with a straight face - whether Mr. Ganz was supporting the idea of eugenics.   Simply suggesting that someone supports eugenics is insulting in the first place, but to ask that as a serious question in a professional environment like the IACC?

The question along is like walking up to a random person on the street and saying "Hi, I hear you want to murder unborn children".  That alone is bad enough, but consider if you did the exact same thing in the middle of an executive meeting at a large company.

I can think of only one word to describe this behavior - juvenile.  If anyone pulled this sort of crap in a professional environment, I have no doubt that they would be quickly voted off of the island.

Dr. Landis's notes are starting to look good in comparison.

Even if you ignore the whole absurd notion that anyone on the IACC would even suggest systematically aborting every child with autism, the question still makes no sense.  Mr. Ne'eman didn't ask someone who was working on a biomarker for autism, nor did he ask someone who was looking for prenatal signs of autism, nor did he even ask someone who was doing any sort of biological research - he asked someone who is basically economist.

Now, I know economist are guilty of doing a lot of things, but for some reason I highly doubt that developing a prenatal test for autism and then making everyone abort any child who failed the test is on their agenda.

I think Mr. Ganz said it best in in his initial response to the question when he basically said "I don't want to insult you but you are being ridiculous."

I second that idea.  Mr. Ne'eman, grow up.


  1. Ari Ne'eman needs to get his first paid job in order to get real world experience and the NDC, a patronage government job that is just a sinecure sure doesn't count.

    Actually I don't think it is necessary for economists to prevent charts and graphs and statistics to show how much autism costs, we already know autism is expensive. Of course, part of the expense could be mitigated if people did not spend so much money on dubious treatments (at least in my opinion) and special education.

    The neurodiversity canard that people are trying to come up with some test so that autistic fetuses can be deliberately aborted is nothing new. It is really old news. The only difference is that the government is stupid enough to pay for a platform which they can present this view.

  2. Jonthan, You are right in that this line of thinking is old news for the ND crowd.

    What is new is that Ari Ne'eman stood up at the IACC and attempted to use these canards only to get smacked down, and hard.

    That gives me at least a some hope that the IACC will actually accomplish something and won't get stuck discussing ND nonsense.

  3. MJ any idea what point in the video the Ari Ne'eman exchange occurs that you have transcribed?

  4. Hi MJ -

    I'm a bit torn. Obviously, the guy shares absolutely nothing in common with my son. I'm highly offended at the idea that he might help craft policy.

    On the other hand, if exchanges like this can be given a wider audience, the intellectual bankruptcy that is part and parcel of being actively opposed to a cure becomes apparent.

    Thanks for posting this.

    - pD

  5. Harold, The exchange occurs at 40 minutes in. The positioning in the video player is a little touchy (and crude) so you may have to settle for as close as you can get before.

  6. Thanks MJ I have reviewed Mr. Ne'eman's performance at the IACC. He looked like he was in over his head ... way over his head. I believe that Mr. Ne'eman has objected to genetic research on the grounds that it would lead to eugenic programs to rid the world of autistic persons. Now he is questioning estimates of the costs associated with autism because ... it would lead to eugenic programs to rid the world of eugenic programs.

    I agree with pD's comments.

  7. Thanks MJ I have reviewed Mr. Ne'eman's performance at the IACC. He looked like he was in over his head ... way over his head. I believe that Mr. Ne'eman has objected to genetic research on the grounds that it would lead to eugenic programs to rid the world of autistic persons. Now he is questioning estimates of the costs associated with autism because ... it would lead to eugenic programs to rid the world of eugenic programs.

    I agree with pD's comments.

  8. I feel uncomfortable saying this, but let's not forget this guy has a "diagnosis" - part of the whole ASD package is a social disconnect, so it's possible the fka HFAs know certain lines get good responses, but don't really "get" the full implications of things. So let's have some understanding.

    On the other hand I am really really freaking out that people like Mr. Ne'eman can hold a position where he can represent the ASD population's view.

    The "Dx" revelation hit me in the midst of an interaction on another blog... there just comes a point where you have to recognize things aren't going anywhere... which is ok, but what happens when the powers that be can point to a comment from a socially disconnected person in support of their social-policy positions?

  9. MyTruth, while I would agree that if this were a social disconnect that we should give the guy more latitude, I don't think that is happening here.

    The discussion was a technical one and the questions that Mr. Ne'eman asked were directly related to things that were said during the presentation. More importantly, if you listen to the next question that Mr. Ne'eman manages to get in, I think it is even clearer that he did in fact understand the topic of discussion.

    So I don't believe this is any way shape or form a social misunderstanding, I think this is him pursuing an ideology. And his ideology is directly harmful to the majority of people with autism, my children included.

  10. Latitude? No - certainly not. I am very angry that the idiot gatekeepers have created such a broad diagnosis that people like Ne'eman can become the "voice" of autism.

    As to social disconnects: sociology is the queen of sciences (guess what my background is?) - after all, everything is filtered by our social consciousness - including the full implications of what one is presenting... or, there's a Dx screwing up the inout-output.

  11. Ne'eman is a zionist, direct from Israel who has obviously been trained to promote propaganda to abet the drug companies.

  12. That is certainly an opinion...