Thursday, March 10, 2016

Will neurodiversity protest and war against the Simons Foundation genetic database?

Going back to the days of Cure Autism Now in the late 90's and early 2000's, neurodiversity proponents have protested research into the genetics of autism, claiming that it would result in a prenatal test that would lead to mass abortions of autistic fetuses, such as what takes place with Down's syndrome, spina bifida, and perhaps other conditions that are far easier to detect in utero.

Amanda Baggs and Laura Tisoncik, proprietors of autistics.org, had on the main page of their website a cartoon depicting a trashcan with the letters CAN written on it with an abortion clinic building in the background with a crude drawing supposed to represent an aborted autistic fetus with the caption "the real meaning of autism prevention".  Ari Ne'eman has stated that he fears genetic research because it could lead to genetic testing.  John Robison in a speech to IMFAR expressed concern that so many autistics he knew worried about these tests, though he acknowledged the possibility that it was the furthest thing from the genetic researchers mind.  Meg Evans (writing under the pseudonym Bonnie Ventura) predicted in 2005 that in ten years' time there would be a prenatal test for autism.  She proved to be a poor prophet.

Years later, Autism Speaks in collaboration with Google initiated the Mssng project to find missing autism genes and developed a database of autism genes which all researchers would access.  This resulted in a flurry of protest on twitter and perhaps other social media.  #notmissing hashtags popped up on neurodiversity tweets and John Elder Robison joined in the fray.  Neurodiversity took offense to the notion that they could be missing and that Autism Speaks was somehow insulting them.

What's interesting is in that all of the years that Neurodiversity has been ranting and raving against CAN and then Autism Speaks, I've never heard a peep out of them about the Simons Foundation or the Simons Foundation Autism Research Initiative.

James Simons is a mathematician who applied his research findings to the stock market and created an extremely lucrative hedge fund that averaged more than thirty-five percent annual returns.  This, at least in part, resulted in him accumulating a net worth of around 17 billion dollars, making him the 88th richest man in the United States according to the latest Forbes 400 listing.  He has an autistic daughter named Audrey who I think is in her twenties now and is at the milder end of the spectrum (anyone is welcome to correct me in the comments section if I'm wrong about this).

With his huge wealth he created a foundation in his name to do research in education, health and other matters.  This included something called the Simons Foundation Autism Research Initiative (abbreviated SFARI).  Though Autism Speaks is a far more prominent and well-known organization than SFARI, Simons is a larger funder of research than AS is.

What is noteworthy is this story about SFARI's introducing the new genetic database which is certainly not dissimilar to the one that Autism Speaks created with Google's help and from neurodiversity's point of view could just as easily result in a prenatal test and abortion of autistic fetuses.

As can be seen  from this ten year old article in the wall street journal Jim Simons gave geneticist Michael Wigler a nearly 14 million dollar research grant to find genetic causes of autism.  They were also friendly, vacationing off the coast of Greenland together.

Wigler's (as well as colleague Jonathan Sebat's) research is interesting in that it seems to find that a fair amount of autism is caused not by genes that are adaptive and stay in the population, but in spontaneous mutations that are not inherited.  This provides some evidence against the neurodiversity dictum that autistic genes stayed in the population because they offered some sort of advantage and that autism is a natural variation that has always stayed in the population, or that elimination of autism would result in a sort of genocide.

So, one has to ponder why neurodiversity is not at war with the Simons Foundation.  Why aren't they calling out Jim Simons as a greedy tycoon who takes money away from autism communities, so that services, research on AAC, and other pet projects of ASAN aren't being done?  This is a complaint that ASAN has lodged repeatedly against autism speaks.

Gadfly must concede that one of the differences between Autism Speaks and the Simons Foundation is that in order to obtain revenue, autism speaks must engage in advertising.  Some of this advertising has been offensive to those in the ND movement.  They were angry about Allison Singer's dumb remarks about driving herself and her daughter off a bridge, they were angry at Suzanne Wright's statements that autism families were not really living (resulting in Robison's resignation from their science advisory board), and they were horrified at the I am Autism video.  The Simons Foundation is independently wealthy thanks to all of Jim's billions and they don't need to engage in this sort of publicity so they won't provoke the ire of ASAN, GRASP, and the rest of ND.

One of the problems with this line of thought though, is that genetic research, particularly databases which all scientists will have access to, regardless of whether it is funded by Autism Speaks, the Simons Foundation or anyone else will have the same result.  If Autism Speaks research could result in prenatal testing, so could Simons'.  If Autism Speaks are a bunch of ogres who are ripping off the autism community, then Mr. Simons is just as culpable.

Or perhaps the real answer is that neurodiversity doesn't really care about the issues of genetics or prenatal selection.  Perhaps they just have low self-esteem due to mental problems or this is just the type of people they are.  Perhaps Autism Speaks' advertising only reminds them of what they hate in themselves.    

12 comments:

spinoff said...

Or perhaps false concioussness is a factor on all these positions. In the case of Simons it might be that his ego will be better pleased believing that his personality, his habits (not necesarily all good) and his ability to make money have nothing to do with his daughter's disorder. And he pays, ¿does he not? The fridge mother and the mathematitian father hover over truth one way or another. And with those and other ideological constrains neither genes nor environments will be made easier to understand.

Ray Rees said...

"Or perhaps the real answer is that neurodiversity doesn't really care about the issues of genetics or prenatal selection. Perhaps they just have low self-esteem due to mental problems or this is just the type of people they are. Perhaps Autism Speaks' advertising only reminds them of what they hate in themselves."

Dude. This is one of the worst things you've ever said. Please tell me you're joking. Accusing all of your opponents of being motivated by depression is awful. It's called gaslighting and don't ever do it again.

And yes, I'm anti-SFARI. You've also made comments critical of Autism Speaks. Why are you defending them?

jonathan said...

Ray, I stand by my comment that many neurodiversity proponents are mentally ill. You only prove my point. I'll be interested in seeing you write unfavorable things about SFARI online, carrying picket signs outside their offices and calling them eugenicists the way they do to autism speaks. I'm not defending AS, just curious why there's a double standard in Neurodiversity's mind.

spinoff said...

The denial of the pro-cure grupo is a fact. There are not treatments and there are'nt going to be in our life times for the majority of the affected, and pro-cure manifestations serve the fundamental purpose of supporting the treatment model for criminal industrial purposes. But you have your good points: the loads to parents and the suffering is real. The neurodivergent idelize themselves, they are all good kids, no Adam Lanza amongst them, Einstein yes, but Hitler in spite the fact that he was far more a phenotype A, never.
I believe that Kanner was right in its detection of phenotype A in the parents, and I have known parents of afected, not all of course, whose inability to see the other's point of view or act in context, and egocentricity are striking and what is very characteristic in an unnecesary manner. Their theory of mind is certainly faulty.
Are they disabled? Certainly no. One of them is very rich having made lots of money in futures, two others have succesful engineering firms, another is a philosophy lecturer and so on. Yes they do have problems with people and a few have problems having a job up to their abilities. Some join the autism world to sort these problems and they can be formidable and to be feared if they get to the actual power points.
Are they mentally ill?, Well let's suppose, for the sake of argument, that they use a manic defense against the depression that characterizes some of the pro-cure people. They certainly can be a pain in the neck. But after all, who has denounced as convincingly as Michelle Dawson that dog-worthy training program called ABA?? Nobody, so thanks Michelle.

Denial, resistance to change, anosognosia, transference/resistance, stubborness, lack of insight etc are words used for all kinds of conditions and phenotypes, by various schools of thought. This is not unique to autsm. The line between normal and disordered is no a fixed or clear one, but we all know when we see an acute psychotic, a Kanner autistic, or sadistic psychopath. Please find a way of widening your scope, you people. You are both right seƱores Robison and Mitchell, and you are both wrong particularly in not seeing the other's point of view.

Mariano

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

Spinoff doesn't even know real autism. His opinions are garbage.

ND is full of people with mental health disorders, including one that is/was the lawyer for ASAN, never diagnosed with autism, pretended to be the Autistic Bitch from Hell for years and wrote child porn, fiction, as far as we know.

jonathan said...

@You're anonymous Actually, if I'm remembering correctly Spinoff does have a son on the lower end of the spectrum who is now an adult. He's entitled to his opinions whether or not you or I agree with them. I even the defend the right of members of ND whom I have contempt with to have their own opinions and express them.

I agree many people in ND have serious mental health issues. It's old news about Autistic Bitch from Hell and thankfully she's retired from blogging. Though some days I miss reading posts that say people like me should be taken out and shot and strangled to death and turned into cat food.

spinoff said...

Anonimous, pehaps I did not express my self correctly and indeed I might have said something wrong. I am indeed a parent of a L.F. autistic, I was a psychiatrist for 40 years in UK and Spain and I have been involved with associative movements in both countries for 20, and I have 3 more children “normal”, Ramiro is the third born, and I am also a grandfather.
I was mainly talking about the existence of a phenotype in parents of affected, one of whose forms is what I tried to describe above. They were/are undiagnosed and personally I think that something could be gained if they were, even if this was an autodiagnosis. In fact when I have intimated on occasions such possibility the reaction has not been very manageable.
The fact that some people flight into illness real or imagined to find excuses for misdeeds somathise anxieties, get pensions or positions of influence, or relieve anxieties is as real in mental health and disability as the contrary which is what generally speaking could be called denial. And that happens also in families of affected of autism, and one has seen from parents tremendously loving which fight in all ways against the label or adapt deeply their lifes to the disability, to parents who make their children excuses for objectionable behaviours, or even make them into sources of income and vials of toxic medications.
In parents and affected, autism is not all: there are biographies, circumstances and decisions which conscious or unconscious open or close ways in our lives. There is good and evil and plenty of mixtures of both. And I suspect that with the ND tribe with or without phenotype, there are people whoh are mentally troubled and troublesome.

Amy Scanlon said...

Jonathan Mitchell,

In various social movements there's a saying. Fry the big fish. Don't waste all your time chasing the little ones.

And I think going after most neurodiversity proponents are indeed, "the little fish". The big fish is Simon Baron-Cohen. The guy who laid the ground for the idea that autism comes with inherent strengths as well weakness. Probably the best critique is done by Cordelia Fine's "Delusions of Gender". While it works primarily from an angle of criticizing the idea that men are "wired" to be engineers, scientists, mathematicians, and mechanics while women to be kindergarten teachers, nurses, secretaries, and social workers rather than the issue of curing autism versus neurodiversity, she does a good job of dealing with methodology.

I think that Simon Baron-Cohen is "your man" in that sense. He is considered a big cheese in psychology. Most neurodiversity activists are just bloggers.

As for Temple Grandin.....I don't see her as a great target. I simply see her as a woman whose opinions really have to be looked at in context. The life she led (in many ways an interesting one), was treated as the only alternative to life in an institution or some nearly marginalized circumstance.

I also think you make a big mistake in assuming that just because psychoanalysis and 1960's era occupational therapy didn't help you much, that current autism therapies (ESMD, PRT, JASPER etc) and more modern occupational therapy, won't help other people. Occupational therapy was very different in the 1980's (when I was in it) than it was in the 1960's and even the 70's. And now it has advanced by lightyears.

So I think you should be more careful in saying that ABA and OT, won't work better for other people.

MY core position. I believe that what we consider autism is many different disorders. I believe that at least some of the "higher functioning" ones can improve (even lose the disorder 100%) with non-invasive therapies that exist today. While medical therapies are in order for individuals with problems such as seizures, I don't think it will be one cure but rather an evolutionary process with improved treatments.

Take cancer. In the 80's and even 90's it was common to talk about "the cure for cancer". Now if by a cure for cancer you meant a single cure would be announced like the Salk vaccine, as in 1955, when shop keepers painted "Thank You Dr. Salk" in their widows and people were visibly celebrating a highly effective polio vaccine.

That day never came, for cancer. But yet a breast cancer survivor if detected in an early stage almost always survives, if she has access to accepted treatment. Ditto prostate. Now more pancreatic cancer is being targeted as an attempt to "beat" a difficult cancer. So while there was never a single cure that had people cheering in the streets, with some forms of cancer it's a different world than it was in the 70's or 80's.

jonathan said...

@Amy Simon Baron-Cohen has had no influence on American politics the way Ari Ne'eman and the rest of the ASAN has had. A bunch of little fish, I believe are a much greater threat than one big fish. SBC has not had a best selling book the way Silberman does. I don't think he presents at popular autism conferences the way, Robison, Plank and Ne'eman do. I've written some critiques of SBC as well, for example that autism stayed in the population through evolution rather than spontaneous mutations as well as his studies about autistics being superior in embedded figures which were not replicated by others.

Temple Grandin is still largely the face of autism and has a great deal of influence in making the dubious claims that autism is responsible for all inventions from the spear to the cell phone.

Though I'm an old guy and grew up in a different era than most autistics, I see no evidence that these programs are largely helpful to autistics. The prognosis for most autistics is still quite poor and nothing forthcoming in the foreseeable future will change that.

I use the term generic cure loosely, when I talk about a cure for autism, cancer, or any other disease, I'm talking in general terms and not necessarily a specific cure. Plenty of people still die from breast cancer and I don't think early detection always saves lives (it didn't in one good family friend and I was saddened by her death). Prostate cancer is a very slow growing cancer and with certain treatments men can live with it for many years, but it still can kill. Pancreatic cancer is harder to detect and I think the mean survival time is less than eight months in people who have it.

Even if there are different cures for a variety of autisms and cancers at some point in time, I'll still use the word cure generically.

Amy Scanlon said...

I think you have to think a little more carefully about what constitutes influence. Freud had a lot of influence in American culture, from blaming mothers for autism or homosexuality (or even if the kids were fat) to views of women, to so much more well into the 1980's, although he was never that political and never with the institutions where the influenced stretched.

Without Simon Baron-Cohen, Ari Ne'eman and ASAN, wouldn't really enjoy more credibility than the deaf adults who don't want kids to get cochlear implants. It's the threat of losing out on all the world's scientists, rather than the idea that it's OK to never speak, that makes people take ASAN seriously. And to understand why that idea caught on, you have to look at what a big influence Simon Baron-Cohen is in modern psychology.

Similarly, I think Temple Grandin probably wouldn't have made most of those statements if it wasn't for Simon Baron-Cohen. He's not just sitting in some little office in England, writing obscure books, that most people never look at. No. He is a major influence on psychology today. Probably the closest anyone has ever come to be as big of a deal in the field as Freud was in his day.

Also I think generalizing about "autistics" is a dicey business is that it's highly questionable that everyone with that label really has the same disorder. I don't think even everyone who fits the old Asperger's label has the same thing, personally.

So frankly, when you are looking for a single cure, you are looking for nothing at all. A more realistic notion, would be how different treatments will evolve for different groups of people who fit under the current autism umbrella. Because I don't see how there can be one cure if there's more than one disease.

If you take Roger Kulp seriously you have to take multiple diseases and treatments seriously-unless of course, you want to say everyone with autism has cerebral folate deficiency.

And there already are a variety of cures for cancer. It's just that their effectiveness depends on the form of cancer, stage detected, general health, how aggressive the cancer is and more.

spinoff said...

Amy Scanlon, Freud never blamed mothers for autism rather mothers fathers and psychoentrepreneurs of all kinds blame Freud for everything. More near the truth would be to state that Freud was a neurologist and neuropsychologist of great world importance, who coined the term "agnosia", to distinguish it from the aphasias and who grouped various syndromes (including possibly some of autism) under the term "cerebral palsy" which is still used, and 80 years before it was demonstrated empirically said that most cp's were not due to troubled labour. It is most likely that Freud would have put autism as a cerebral palsy (he said that some retarded children without spasticity were so) or perhaps a development agnosia.
What some of his supposed followers did with his extraordinary theories of psychoanalisis later on, is another matter, and it would be very doubtful if Bettelheim would be accepted as a freudian analist these days.

Sorry for the spelling mistakes I write from Spain and I have not been in England since the last century. Here certainly Baron-Cohen is well known, goes all over the place selling his wares but I doubt it that it has much influence in the theme of neurodiversity, he is the great guru of the useless "theory of mind" and similar endevours. Nobody here knows Robison or Ne,man but there is some awareness of the neurodiversity movement thank to the wider "diversidad funcional" which is growing fast and even a bit due to some blogs for o agaisnt like yours which the odd student or professional read.

And you have to bear in mind that the main factors in all this are the huge growth in prevalence, which implies that some diagnosed are going to be clever enough to follow Robison, and the lack of actual medical treatments and prospects of them in the next decades. And what you have is a case of euthanasia similar to the Action T4 nazi but for comercial purposes and in slow tempo. And both pro-cure and neurodiversity looking to the other side for the ones being done are not clever enough to merit rights.

EK Aspie said...

I certainly hope ND's fear of these databases bieng used for eugenics is just paranoia. History suggests otherwise. Eugenics is in America's DNA (pun intended). Eugenics was widely accepted in science and popular in the general public here. Nazi Eugenicists were inspired by and based thier eugenics program on the American one. https://en.m.wikipedia.org/wiki/Eugenics_in_the_United_States

But I do agree wirh your premise that the ND's movement's "special interest" in Autism Speaks has made them overlook other potential eugenics programs. Specifically I have in mind the gene line editing program known as CRISPR-CAS9 https://spectrumnews.org/news/crispr-way-to-cut-genes-speeds-advances-in-autism/