Wednesday, February 10, 2010

Morton Gernsbacher trivialized my dreams

Now that I have recently once again come out of retirement from being a research subject in autism studies because of my involvement with Dan Kennedy in Ralph Adolphs' lab at Cal tech, I thought I would discuss a somewhat dated op-ed piece written by famed neurodiversity idealogue Morton Gernsbacher.

This was written in April of 2007 when Michelle Dawson's journal article (of which Gernsbacher was one of the secondary authors) comparing autistic individuals scores on the Wechsler IQ test versus Raven's matrices was published. Though Michelle Dawson's highest formal education is a high school diploma, she works with Gernsbacher and Laurent Mottron as an autism researcher. What makes Michelle unique is that she herself has autism and does research in autism. Gernsbacher in this editorial gives a shout-out for the need for more autism researchers with autism and seems to imply that the dearth of autistic autism researchers is not due to an autistic person's impaired ability to get a doctorate and become a scientist but rather because of societal constraints put on those with autism.

This hits home with me as I had the goal of becoming a physiological psychologist or neuroscientist or possibly a neuropsychologist at the time I was a college undergraduate in the 1970s. My lack of fine motor skills which precluded me from doing stereotactic surgery on animals, my mediocre grade point average (which neurodiversity hatemonger David Andrews relishes mocking me over) prevented me from obtaining this goal. It was a huge disappointment in my life that I could not be a brain researcher and find a cure for myself (my ambition at the time albeit admittedly an unrealistic one), my impairments were what prevented me from attaining this goal, not societal constraints.

I agree with some of Gernsbacher's sentiments that it would indeed be nice if there were autistic autism researchers. Of course I would hope that they would do research with the intent of finding the etiology of autistic impairments rather than having a neurodiversity ideology. However, there are numerous flaws in her arguments.

She extols the aptitudes of numerous autistic individuals stating why she feels they might be good candidates as autism researchers. I agree with her characterization of Michelle Dawson as a polished writer and a scrupulous thinker. I have no reason to doubt Michelle Dawson's autism. However, she mentions Amanda Baggs, who as many people know has a questionable diagnosis. She lauds Amanda Bagg's writing style, her voracious reading and analytical skills. Yet one wonders how someone who goes out of their way to post youtube videos showing that she is so impaired that she can't even boil water could possibly be an autism researcher.

She also cites Joseph of the natural variation blog as an autistic critical thinker. Yet Joseph has admitted in the past that he has never had a formal autism assessment and diagnosis, but only that his son's psychiatrist stated that there was a good chance that he had some sort of autism spectrum disorder.

Michelle Dawson has often emphasized the importance of accurate information and has given yours truly scathing criticism for information that she deemed inaccurate. Yet she collaborates with Morton Gernsbacher who is claiming in the above-linked op ed piece that Vernon Smith and Richard Borcherds have autism spectrum disorders and have been officially diagnosed. This is one of the many standard neurodiversity lies and is at the cutting edge of inaccurate information that ND's such as Gernsbacher give.

Vernon Smith only took a self-assessed AQ test and at age 78 announced to the media that he was autistic. He has admitted in his autobiography to never having been diagnosed by a clinician.

Richard Borcherds at age 38 sought a diagnosis from autism psychologist Simon Baron Cohen who would not give him one. Borcherds is married and an award winning mathematician. In Baron Cohen's book "The Essential difference" Borcherds putative autism diagnosis is discussed:

One might question whether Richard Borcherds really merits a diagnosis at all, given how well adapted he is. Certainly he is not currently severe enough in his symptoms to warrant a diagnosis in adulthood, as his symptoms are not interfering with his daily functioning. In the jargon of the diagnostic criteria, he is not "suffering any impairment in his daily life"........

Gernsbacher goes on to compare autistics to blind and deaf people who do research on themselves. Yet blindness and deafness do not entail the same cognitive impairments and behavioral issues that an autistic person may have which would preclude them from going to graduate school and becoming a scientist or researcher. Even more offensive (at least to this writer) Gernsbacher compares the fact that gay people do research on issues in homosexuality and for this reason becries the dearth of autism researchers. There is a contentious debate on whether or not homosexuality is normal or abnormal or is pathological or just another sex preference that should not regarded as pathological. Most persons would not consider homosexuality in and of itself a disability. Unlike a person with autism, there is no reason a gay person, could not function in society, go to graduate school, become a scientist and a researcher on gay issues just because they have a different sexual preference from a heterosexual. No reasonable person would say the same thing for persons (some who can't even speak) have uncontrollable self-stimulatory behaviors and certainly can't function in society due to an intrinsic disability. Or perhaps this is a tacit admission on Gernsbacher's part that she does not consider autism a disability-something numerous persons involved in the ND movement insist they never do and that they do in fact believe that autism is a disability. If the latter case scenario is true then one has to wonder whether or not they in fact consider homosexuality a disability.

What is interesting is that one putative autism researcher that Gernsbacher neglects to mention in order to bolster her case is Teresa Binstock a woman with Asperger's syndrome who has participated in research studies of biomed persons, persons who insist that there is a true rise in the prevalence of autism as well as the idea that mercury or some other environmental insult is responsible for a huge autism epidemic and that genetic factors are less important or nonexistent. This idea is anathema to most in the ND movement. So one wonders why Gernsbacher fails to mention Binstock.

In fact Generation Rescue (an organization which most in the ND movement have expressed extreme contempt towards) gives this glowing description of Binstock:

In 1997, after a 50+ years of symptoms, Teresa was diagnosed as having Asperger's Syndrome (1). Her intense focus, perserveration, and hyperlexicality have augmented her research.

Sound familiar? Rather ironic if I do say so myself. Given the fact that Gernsbacher has written a piece along with her husband, Hill Goldsmith and Michelle Dawson denying that there has been an epidemic of autism and stating the term "epidemic" is offensive I wonder if Gernsbacher would be happy with someone on the spectrum such as Ms. Binstock who does research trying to disprove her notion.

Gernsbacher shouts out some program that NIH has that encourages students with disabilities to pursue graduate studies and become doctoral level researchers and claims that autistics can take advantage of that. Well, Dr. Gernsbacher, I certainly tried my best, I was not able to cut it because of my disability. I would love to be a brain researcher and find the etiology of the defects (not differences) that cause autism. I would love to be able to find a way to cure it. My disability prevented me from doing that. I am not sure what Binstock's formal education is, but other than this example Gernsbacher neglects to mention a single doctoral level autism researcher (this excludes Michelle Dawson who does not even have an undergraduate college degree) and to the best of my knowledge there are no persons with autism who have Ph.D. degrees who are professional autism researchers, not one. I doubt very much any actually exist. If anyone can cite an example of a Ph.D. psychologist, neuroscientist or other person with autism who does autism research in the comments section of this blog I will certainly stand corrected. (Temple Grandin whose doctorate is in animal science and is not an actual autism researcher does not count). Perhaps the reason there are no autism researchers, Dr. Gernsbacher is that they don't exist and it is impossible for them to exist (at least in any extensive numbers barring a rare occurrence) without the cure you would deny autistic people, only offering acceptance as an alternative.

I believe Gernsbacher should be greatful that there are autistics who offer their services merely as research subjects even if they can't be researchers. The high functioning people who serve as the research subjects do her and other scientists a great service. Their journal articles, their grants and in fact their very livelihood itself would not exist without us. She should take this into consideration.

More importantly in addition to trivializing my failed dreams, Gernsbacher who has claimed that severely autistic people have made great contributions to science yet neglects to document one example, makes a mockery of the extreme hardships that persons on the lower end of the spectrum and their families go through. Not only can these persons not be researchers, they can't even be research subjects in most studies. This is because they would not be cooperative in eye tracking studies or sit still in an MRI scanner long enough for an accurate reading to be obtained or cooperative in a mu wave suppression study involving neurofeedback or some other autism treatment. Instead of complaining about autistics not being able to be researchers Dr. Gernsbacher should be complaining of the infeasibility of being able to assess lower end autistics and perhaps coming up with some sort of methodology to rectify this problem.

Most interesting of all is the following statement from Gernsbacher in her piece in refuting the argument that autistics might not be objective as researchers:

Or perhaps it’s believed that by including autistics as research collaborators, objectivity would be foiled. As I hope my previous APS Presidential columns have illustrated, a lot of research on autistics (and research on other groups) is far from objective. As Graham Richards, former historian of the British Psychology Society, has stated, the “general consensus that the scientist detached from the rest of humanity in some realm of pure objectivity has ceased to be a professional ideal, and it was always in any case an unreasonable one.”

If this preceding statement is true, then is Gernsbacher herself free of influence of neurodiversity bias in her own research as well as that of her frequent collaborators Laurent Mottron and Michelle Dawson (who has stated that science isn't politics)? Will Gernsbacher admit that her possible lack of objectivity as well as Mottron's might be influencing the interpretations of their research results that autism is some sort of gift that should not be cured or even looked upon as a defect?

In addition to considering how she is trivializing one autistic's failed dreams perhaps Dr. Gernsbacher can engage in some self-reflection on her own statements about objectivity in research.


farmwifetwo said...

Do they also ignore Dr Temple Grandin who also says/written that "biomed" has helped her??

Jake Crosby said...

Temple Grandin was recently quoted on AoA, endorsing GF/CF diet and Omega-3.

The author said...

I do not have my PhD yet it is true, but I am researching autism, albeit from an education perspective.

One thing that has to be pointed out about PhD research without appearing overly concieted about my own ability in that respect (yet to be proven by completion) is that the ability to undertake such academic work has little to do with impairment, unless one counts all of those people who have never been educated beyond high school as intellectually impaired.

Not everybody makes the grade, just as not everybody makes the grade in sports.

You know there are a lot of things which make it difficult for most people to gain a PhD, be that work or family commitments, not being able to afford it, or never having had the requisite level of basic education to make it as an undergrad in the first place.

My particular path in higher ed is chequered, I failed my first degree, I ought not to have been at University at that point in my life, I was not up to it.

So far as being a research subject, I have done that too, at Cambridge my diagnosis being sufficiently watertight for Simon Baron Cohen's team.

Oh and the presentations I do nowadays, are not self narrating zoo, they are academic. I have also passed the University of Birmingham's criterion to teach undergraduates.

None of that means I am not impaired, nor that my daily life fits anything like the description of normal compared to my peers.

jonathan said...

Author: IIRC you have made it plain in the past you don't consider autism a medical disability of any kind. If you are impaired you believe it is due to the social model of disability rather than the medical model. You gave SBC's assinine essay supported by the angry david andrews about why HFA should not be considered disabled a shoutout. You were also distressed that he did not include low functioning individuals in that rubric, so it is quite clear you don't consider yourself impaired so that it would prevent you from going to graduate school and getting a doctorate unlike myself. If you had the impairments I have you quite possibly would not have made the grade as you have so far.

The author said...

Jonathan, your cognitive impairment in one respect is plain, and that is your failure to grasp, (not because you don't have the intelligence) the fundemental point of the social model, that it does not and never has denied impairment, it is a different perspective on impairment dissociating the degree of social, environmental and economic disadvantage from the individuals impairment to the response of others to it.

You have no legs and there is a barrier you can't get over, well if somebody either removes or helps you over the barrier, then the impairment is not the relationship of your lack to that barrier but whether it is removable or not.

I would posit that like me, you have lived in times different to the present and most likely you would be eligible for some degree of support at university nowadays, such that a physical inability to carry out a certain task, be that stereotactic precision or whatever would be overcome by assistance. I daresay these day it is possible for someone with severe cerebral palsy to become a neurological researcher.

You fail to understand impairment altogether it seems, and that we may well be more alike than you care to recognise.

You have however constructed barriers to your free thought in that you have projected some notion of either physical or mental superiority onto people who have at this time achieved things that you have not.

However you claim moral superiority. It doesn't work.

As for the social model, that was not invented by this nebulous "neurodiversity" but people who in your world outlook you would consider as having severe 'disabilities'.

My impairment is not caused by social situations my disability or to put it more accurately disenablement is and those are two different things.

I have made the grade today, when I could not in my youth, because there is a whole different academic environment today in terms of support and assistance available.

Of course Temple Grandin made it without all that.

Can we not put aside our differences occasionaly and agree on something, particularly about self serving publicists like Michael Carley and Lianne Willey who feed on the Asperger's lable with what amounts to a phobia concerning the rest of autism.

The author said...

Oh and FWIW I am also not married, I have never had a great deal of success in relationships with the opposite sex, I don't have a job beyond being paid for the occasional lecture, and I live in a run down part of town, where crime, drugs, arson and single parent families seem to be the norm, hardly the trappings of success. Letters after your name are not everything, they are perhaps only as Boethius put it the consolation of philosophy. Look up Boethius, fine Roman intellectual, but much good it did him, he was tortured to death.

jonathan said...

I daresay these day it is possible for someone with severe cerebral palsy to become a neurological researcher.

I agree, but cerebral palsy is not autism nor asperger's or whatever wastepaper basket term you want to call my specific condition.

You fail to understand impairment altogether it seems, and that we may well be more alike than you care to recognise.

I think I understand your definition from it from about 9 years back or so when we used to knock heads in the usenet newsgroups in the old days and you introduced to H.G. Welles interesting Short story the country of the blind. It seemed to me the story was just a parody on an old expression but you took it as a treatise on Welle's part advocating the social model of disability, implying that if accommodations were made for blind people, they could live like everyone else and the sighted man would be impaired in their society, so I think it is you who are confused about some things.

However you claim moral superiority. It doesn't work.

I don't know how this is so, unless you feel that rejection of the social model of disability in general and neurodiversity in particular and exposing the sometimes (at least in my perception) the lack of morality that adherents to these philosophies engage in in the blogosphere on my blog or elsewhere is moral superiority.

Can we not put aside our differences occasionaly and agree on something, particularly about self serving publicists like Michael Carley and Lianne Willey who feed on the Asperger's lable with what amounts to a phobia concerning the rest of autism.

I thought we had already done so and possibly could so again on things were are in agreement in and I am glad that at least some members of the ND club don't agree with Carley and Willey.

Droopy said...

The author said...

"You have no legs and there is a barrier you can't get over, well if somebody either removes or helps you over the barrier, then the impairment is not the relationship of your lack to that barrier but whether it is removable or not."

You might be interested to know that this line of thinking is currently being used in the US at least to prevent people from getting the full scope of services they need.

A person who can communicate effectively, in at least some settings, with their AAC device,

therefore an agency who requires stipulations such that there be
"significant impairment in expressive or receptive language" be met demonstrated before they'll assist the person simply says,

"she communicates very well with her communicator, therefor she has no expressive communication issues"

and thus entire services, including for settings where somebody does have barriers in spite and sometimes quite because of their dependency on this assisted technology, are summarily cut off

(The AAC device magically becomes exactly and precisely one verbalising voice, nothing more nothing less and the person must operate only under conditions a verbal person will)

which is paramount to saying that for example, because a person who needs a wheelchair can wheel themselves across a particular room they have absolutely no mobility or additional issues, no differences whatsoever from the walking able-bodied and are completely and exactly the same in every setting and under every condition.

(The wheelchair magically becomes exactly and precisely one pair of legs, nothing more nothing less and the person must operate only under conditions a walking person will)

I'm telling you,

this stuff you guys keep coming up with/espousing is only being used as just another means to deny us.