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.