Tuesday, June 16, 2015

Is Ari Ne'eman qualified to give input on autism research?

In a recent interview with the simons foundation , Ari Ne'eman advocated for having autistic persons give input on research into autism. We already have the interagency autism coordinating committee which is packed by members of the neurodiversity movement who claim to be on the autism spectrum yet apparently have little or minimal disability.   To date, not a single pro-cure, anti-neurodiversity person on the spectrum has been appointed to this board.  John Robison has served on various research committees in an advisory capacity and stated he was on the board of the CDC's ADDM, which tracks the prevalence of autism in the U.S.  He also claimed that he was asked by the Harvard TMS group to assist in formulating the TMS experiments they did in which he was a research subject.  This is in spite of the fact that he dropped out of high school in the tenth grade.

In the article, Ne'eman mentioned that as African Americans and Hispanics are involved in research in the problems these groups face that this should apply to persons with autism (Gadfly is not using first person language that ND's insist upon)  Gadfly feels this is a bad comparison as race does not disable a person as autism does.

He also mentioned that there are deaf people who participate in research on deaf people.  What about other medical conditions?  Do diabetics insist that they give input into scientific research on diabetes, even if they're not formally trained molecular biologists.  Do people who've had infections sit on FDA boards and decide which antibiotics should be approved?  Though Stephen Jobs was a brilliant man who accomplished much in his life, he didn't spend time giving input on cancer research.  Why is autism different?

Ne'eman has a bachelors degree in political science.  Though far more educated than John Elder Robison, Gadfly wonders what he knows about research methodology, statistical analysis and what other qualifications he has to analyze or interpret statistical data.  One of the lines from the Simons Foundation article is particularly interesting:

The goal is to boost the research’s real-world impact by getting input from those most affected by it

Does this mean that Ne'eman is qualified.  As far as I can tell, Ne'eman's only current disability is that he's overly sensitive to velvet texture.  Other than that, I don't understand how he is disabled let alone being one of those most affected by autism.  According to this sentence, only people who are completely nonverbal, have IQs less than 30 and are still in diapers and under some sort of institutional care are the only ones who should be giving this input to the government.  Will Ne'eman include these?  Is this who the government is going to put on the IACC and on these scientific advisory boards next?  With all the crazy things that the government has done with autism, I suppose nothing should surprise me. 


marytormey said...

As an Autistic person, I would like to point out that it would be very hard to ask a squid how it feels, to have the voltage in their nerves altered. I was exposed to high doses of Sodium Fluoride which behaves differently from Sodium Chloride in human nerves. I have neurological damage and I am sick of other people trying to tell me how I feel or that I'm mentally ill because I feel pain from sound, since being poisoned.

......I'm Anonymous said...

"be very hard to ask a squid how it feels"

So the low functioning are no different than squids.

A better future for all said...

Jonathan you do have some good points. You raise very good questions.

You said " According to this sentence, only people who are completely nonverbal, have IQs less than 30 and are still in diapers and under some sort of institutional care are the only ones who should be giving this input to the government. Will Ne'eman include these? "

My answer to this is that you're partially right yet you're partially wrong. The answer in my opinion is precision. Remember, no matter our functioning levels we are still on the spectrum, right? The idea is that maybe you will get more precise data then without input from those affected but it won't be 100% exact.

All the researchers, psychologists, professionals, etc can do is go by what they observe in their clinical environments. What they're missing is data from the inside out. The person's thoughts and experiences. These experiences provide more data to researchers.

More than likely, assuming that we're all on the spectrum some more so than others researchers and others could get a better idea as to what's going on in the lower functioning person's thought patterns and provide better and more effective methods of treatment. By looking at the higher functioning persons one can make some generalizations of the lower functioning persons. It won't be perfect, not 100% and not exact. One can get closer to it. One can analyze and one can draw out patterns.

Have you dealt with functions on a Cartesian plane in which one can get closer and closer to zero but never reach zero?

Anonymous said...

I'm new to the blog, mildly autistic but worsening (or worsening at masking) with age, and probably permanently unemployed.

I was wondering how often you've heard simething like my pet theory that the major lights if the neurodiversity movement are very mild autists and heavier autists' parents and siblings both because they are more capable of any sort of advocacy and because further along the spectrum one doesn't care enough about social things to need the defence mechanism which would make one even _think_ of claiming it's not a disease. I think that semi-functional autists tend to be literal-minded (I'm avoiding 'honest' because it's self-stroking) enough that we get uncomfortable not calling a spade a gardening tool (or cards suit).

Anonymous said...

Maybe you should look up the neurological virus Toxoplasma Gondii its a nasty virus that can effect a persons coordination skills as well as other behavioral patterns. Toxoplasma can also greatly boost testosterone levels which makes people irritable at best and go into a rage at its worst. Worse still over 50% of the people living in North America are infected with it. The virus is spread through undercooked meat, contaminated counter tops, and kitty litter boxes. Maybe you should consider a few things before lumping everyone under one umbrella. Truth be told we don't need no stinking hive agenda where everyone brains are manufactured to fit the collective borg agenda.

salpurdy said...

Hello, all, I'm reminded of the current furore over Lyme Disease, which I hear now can be caused by other environmental factors, as well as by tick bites. I believe some of it is an Autoimmune disorder, coming up in place where people may never even see a tick, let alone be bitten by one. I think it's out of expediency that the CDC blames so much of it on ticks, and not the difficult-to-fix environmental issues. Also I see a great deal of victim blaming, by those in power, and it's been going on a long time--I don't see personally a way of engaging the issue meaningfully, as my hands are full with the usual middle-age crises.Also, speaking of Diapers and low IQ, I think, if the "conspiracy theories" are true, "they" won't stop, until we're ALL in diapers before the age of 70, and our brains fried with chemicals that we will have no more functional IQ than a breath mint. I don't mean to change the subject, but I'm writing very "Aspie" here, and mostly unedited. Parting shot, is anybody else scared sh*tless by the movie "Idiocracy"? I am. And I KNOW it's supposed to be a satire.

Anonymous said...

I recently walked away from being a member of the local ASAN chapter where I live. The level of hypocrisy, double talk and shaming is amazing. There is no way these people represent me. I was doing some google searches to see if any one else has had any similiar experiences with ASAN when your blog popped. I'll be following now.