Marginalised Researchers In Neurology

Postby davidbanner99@ » Mon Feb 01, 2021 9:46 pm

(Re-published from my site):

I thought I would add a few words on this theme in between researching subsequent chapters to my last post. Here, I will discuss the state of autism research today and highlight a few hard facts. Incidentally, my use of the term “autism” relates to conditions such as Asperger Disorder, Schizoid Pathology or Schizophrenia, as opposed to mental delay.

For decades autism research has been monopolised by institution approved psychiatrists, psychologists, neurologists and acclaimed authorities on the subject in question. However, what needs to be stated in clear terms is 99 per cent of these specialists are not themselves on the autism spectrum. And by “autism spectrum” I refer to neurological pathologies severe enough to have disrupted school, employment and family life. Indeed, two former friends who suffered such a condition are now both deceased. One, a brilliant musician (gifted in maths) who took his own life. The other an artist and geology student who died around 50 of cancer. Neither could hold down a stable job. Neither found the stability of circumstance that would allow others to learn from their challenges.

Why, you might ask, should it matter if research is being carried out and published in a system that apparently marginalises those who suffer from autism related disorders?

The answer to this is simple:

Even going back as far as the 1930s, psychiatrists based their research on observation of children who were usually aged between 10 -14 years of age. Therefore, such research relied upon personal evaluation of the researcher, based upon what was observed in clinics or special schools. Children at such an early age will clearly manifest self-evident symptoms of a pathological condition but will not be articulate enough to be able to explain themselves.
It should be stated a great many of the papers I have read to date by autism authorities describe the patients in dismissive terms.

“Asperger also believed that people with his syndrome had high intelligence, but he did not cite the results of standardized intelligence tests to confirm this. As will be seen from the case histories in the Appendix, special abilities are based primarily on mechanical memory, while understanding of the underlying meaning is poor. People with the syndrome have visible deficits in common sense. ”(Lorna Wing).

The logic employed is, “What is not normal or socially explicable must, by default, be inferior.” To a certain extent, the proclaimed pioneer of autism research in 1980s Britain, Lorna Wing, was equally guilty of evaluating her subject matter on the basis of children. Wing considered her patients to be limited, less intelligent and lacking common sense. She likewise dismissed Hans Asperger’s extensive research on intelligence testing as unsubstantiated (but called her syndrome “Asperger Syndrome”).

With regard to Asperger himself, the question should be raised as to whether his status around the 1990s had somehow proved to be an irritant to autism authorities. Asperger was one of a tiny number of psychologists who actually listened to the children he was actively researching, at the University Of Vienne in Austria. ”

“You can talk with him as with an adult and learn a lot from him.” (Asperger referring to a patient).

It seems quite clear Asperger became convinced the establishment of special schools would enable neurologically disadvantaged children to develop on a more level playing field. That is, through the use of different teaching methods, streamlined to cater to abstract thought-processing. However, we are deviating somewhat from the subject matter.

The basic thrust of my post is that lecture halls will continue to be packed by spectators who are eager to hear the latest lecture, delivered by the latest specialist, who will happily quote strings of impressive chemical formulae, at the same time possibly lacking a solid background in German neurology research. This remains, therefore, something of a socially orientated affair where neurologically “normal” people can happily discuss neurologically “abnormal” people in the presence of far greater numbers of neurologically “normal” people. Let us also be quite clear that, given the constraints of the social status quo, those of us who are genuinely Schizoid, Schizophrenic or suffering similar pathologies are unlikely to be granted a “a special guest speaker position”.

By the same token, you may well notice that each time a licensed authority on autism research publishes the latest best seller on “understanding autism”, critics will, more often than not, rush out to purchase the said book and lavish the author with plenty of positive feedback. Meantime, researchers in university faculties will continue to justify state grants by publishing papers that usually prioritise genetic/biological terminology but fall short of standards in science that existed as far back as the 1940s.

Why then is there practically zero input in this field from tbose of us who actually experience autism in whatever shape or form? Two responses:

(1) Those of us who are far more articulate than the children (used so often in case studies), tend to lack any referenced awareness of “self” in relation to “normal people”. For example, a gifted mathematician who suffers Schizophrenia would typically have no idea of how others may perceive him. Such people remain remote and withdrawn, preferring to specialise in a narrow area of interest. Most have never been able to imagine how different the normal standard of though process is from their own. For an autist to be able to successfully explain the mechanics of neurosis to others requires the capacity to at least intellectually conceptualise polarities of difference. A reference point, so to speak.

(2) Social hierarchy tends to marginalise or ignore the input of those of us us who fit Kraepelin’s description “Degenerierte Verschrobene”. The very nature of being autistic is, after all, to be socially isolated. This leads to a situation I can best describe by analogy : Autism research is a little like the imaginary scenario of several native English people who undertake to learn German, but then choose to talk in the studied language with one another. Never trying to contact or converse with a native German speaker.

To conclude this post, I can affirm after some 5 or 6 years learning about neurological pathologies and autism related disorders, I detected something akin to a brick wall that surrounds this area of research under an umbrella of institution-rubber stamped academia.
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#1

Postby davidbanner99@ » Mon Feb 01, 2021 10:18 pm

Here's a good example of why I tend to regard modern psychology research as something mostly to avoid ( as a general rule). Pretty much all my own sources are German 19th 20th century psychologists, translated into Russian. This was probably a result of East Germany passing research to Russia in Soviet times.
The problem I found with psychology today concerns the basic assumption that censorship is fine if you use it to remove views that disagree with your own. Can you believe what is written below is an extract from possibly the most revered academic in psychology? Essentially he breaks all the rules of etiquette. His response to another researcher is she has "an agenda" (1) and her paper should be "retracted (2).
In the 1940s respect amongst academics was an unspoken golden rule.

"Falk’s paper, which relies heavily on online translation software, does not contain a single relevant piece of new evidence, but abounds with mistranslations, misrepresentations of the content of sources, and basic factual errors, and omits everything that does not support the author’s agenda of defending Hans Asperger’s record. The paper should never have passed peer review and, in view of the academic credibility of all parties concerned, it should be retracted."
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#2

Postby Richard@DecisionSkills » Mon Feb 01, 2021 11:00 pm

davidbanner99@ wrote: However, what needs to be stated in clear terms is 99 per cent of these specialists are not themselves on the autism spectrum.


Two points:

First, what percent of specialists should be on the autism spectrum? If 1% of the general population is on the spectrum then statistically that 99% of specialists are not on the spectrum would be about right. In fact, it might be a little too high, given not all on the autism spectrum are capable of producing scholarly works.

I mean, you do realize that if 1% of the population is autistic then it is not a statistical issue for 99% of specialists to not be on the spectrum? What's your expectation, that 97% of researchers are not on the spectrum and 3% are autistic?

Second, a person doesn't have to have cancer to be a scholar on cancer, right? You don't have to be delusional or suffer from delusions in order to produce solid research on delusions, right? Equally a person doesn't need to be autistic to produce good research on autism.

In other words, I think you might want to reconsider your fundamental claims. Might there be other reasons why your work fails to gain traction? Might it be the case that your work is not marginalized because of autism, but that there are other reasons?
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#3

Postby davidbanner99@ » Tue Feb 02, 2021 1:13 am

Richard@DecisionSkills wrote:
davidbanner99@ wrote: However, what needs to be stated in clear terms is 99 per cent of these specialists are not themselves on the autism spectrum.


Two points:

First, what percent of specialists should be on the autism spectrum? If 1% of the general population is on the spectrum then statistically that 99% of specialists are not on the spectrum would be about right. In fact, it might be a little too high, given not all on the autism spectrum are capable of producing scholarly works.

I mean, you do realize that if 1% of the population is autistic then it is not a statistical issue for 99% of specialists to not be on the spectrum? What's your expectation, that 97% of researchers are not on the spectrum and 3% are autistic?

Second, a person doesn't have to have cancer to be a scholar on cancer, right? You don't have to be delusional or suffer from delusions in order to produce solid research on delusions, right? Equally a person doesn't need to be autistic to produce good research on autism.

In other words, I think you might want to reconsider your fundamental claims. Might there be other reasons why your work fails to gain traction? Might it be the case that your work is not marginalized because of autism, but that there are other reasons?

I think gain of traction, so to speak, is not the measure of science. I was just reading Bleuler's remarks on Ambivalence as a symptom of Schizophrenia. It struck me this is a bit misleading. The idea that logic is discarded to cater to desire or emotional need seems to me very typical of modern research. Tell people what they want to hear and they press the "like" buttons. Experts tend to argue emotionally and build a case that suits their desire. Real science has to be cold and analytical. What people may "like" must not be of importance. A few people found it hard to accept my autism story since naturally they notice my style of writing and apparent education. However, my background most definitely backs my testimony. School for me was identical to the Asperger children. Employment record atrocious. Having said that I now control my symptoms most of the time pretty well. It gives me a deep insight into psychology - and more recently how to read normal people. You can reel off scores of autism spectrum experts and very few suffered the full impact of the deviation. And to really understand it you have to experience it. Beyond that you have to learn to evaluate yourself by comparison to normal thought processes.
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#4

Postby Richard@DecisionSkills » Tue Feb 02, 2021 3:03 am

You offered the following claim as some sort of evidence of being marginalized.

davidbanner99@ wrote: However, what needs to be stated in clear terms is 99 per cent of these specialists are not themselves on the autism spectrum.


What percentage of specialists do you believe should be autistic?
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#5

Postby davidbanner99@ » Tue Feb 02, 2021 7:11 pm

Richard@DecisionSkills wrote:You offered the following claim as some sort of evidence of being marginalized.

davidbanner99@ wrote: However, what needs to be stated in clear terms is 99 per cent of these specialists are not themselves on the autism spectrum.


What percentage of specialists do you believe should be autistic?

I myself am not marginalised. Autistic people are marginalised. By "autistic" I refer to a wide spectrum of people. Some autistic people are severely disabled. Others, such as myself, may be articulate and creative but physically slow or they process information differently. They may struggle to interpret non-verbal language and or have Schizophrenia. Due to the struggle to cope with their difficulties most people with said condition don't assert themselves in research. It is also very rare for even the higher functioning people to view themselves in perspective to normality. On the other hand I do assert myself as psychology and neurology came to interest me a whole lot. It became an amazing experience to see how neurological differences work in reality. What you refer to is my comment few people are actually interested in my input. Yet, this was not intended to refer just to myself. I'm saying we need research that engages autistic people of all ranges. John Nash for example suffered Schizophrenia and was a brilliant mathematician. However, such people are very rarely interested in psychology. Most are not interested. Those who may be interested in the subject would be difficult to understand. Most academics I spoke to to date seemed a bit "put out" to be corrected. However, there was one very high-standing expert who loved my essays and read them repeatedly. He was likewise an Asperger diagnosed neurologist.
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#6

Postby Richard@DecisionSkills » Tue Feb 02, 2021 7:29 pm

You offered the following claim as some sort of evidence of being marginalized.

davidbanner99@ wrote: However, what needs to be stated in clear terms is 99 per cent of these specialists are not themselves on the autism spectrum.


What percentage of specialists do you believe should be autistic?

Can you answer the question?
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#7

Postby davidbanner99@ » Tue Feb 02, 2021 9:22 pm

Richard@DecisionSkills wrote:You offered the following claim as some sort of evidence of being marginalized.

davidbanner99@ wrote: However, what needs to be stated in clear terms is 99 per cent of these specialists are not themselves on the autism spectrum.


What percentage of specialists do you believe should be autistic?

Can you answer the question?


What I'm picking up here is an attempt to steer an issue away from its original meaning but on safer ground. However, at this point I begin to question your knowledge of the subject.
Your question to begin with lacks your own definition of autism.
Also if you disagree with my article as I presume, why not just quote me the names of renowned (and acclaimed) psychologists who experienced clinical neurotic disorders.
I can name quite a few recognised experts who some would call neurotypical:
Lorna Wing
Tony Atwood
Van Krevelin
Steve Silberman
Manuel Casanova
Dean Falk
S Munhin
V Kagan
Simon Baron Cohen
And so on.....
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#8

Postby Richard@DecisionSkills » Tue Feb 02, 2021 9:28 pm

davidbanner99@ wrote:What I'm picking up here is an attempt to steer an issue away from its original meaning but on safer ground.


Yes. You are trying to steer it away, ignoring a question about a claim you have made.

Do you always make claims and then just avoid answering, steering the discussion to safer ground when someone presents a question regarding one of your claims?

You claim autistic people are marginalized. In support of this claim you say 99% of people in the field are not autistic. This means 1% are autistic. What percentage do you expect it to be?
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#9

Postby davidbanner99@ » Tue Feb 02, 2021 9:55 pm

Richard@DecisionSkills wrote:
davidbanner99@ wrote:What I'm picking up here is an attempt to steer an issue away from its original meaning but on safer ground.


Yes. You are trying to steer it away, ignoring a question about a claim you have made.

Do you always make claims and then just avoid answering, steering the discussion to safer ground when someone presents a question regarding one of your claims?

You claim autistic people are marginalized. In support of this claim you say 99% of people in the field are not autistic. This means 1% are autistic. What percentage do you expect it to be?


You miss the whole meaning of my article.
This can be simplified quite easily:
(1) You disagree with my article? Fine. Unlike other bloggers I allow disagreement on my site (Wordpress)
(2)You disagree that 99.5 or so per cent of the research came to us from neurotypical researchers who studied children? Again fine. That is your opinion.
I seem to recall Steve Silberman wrote something similar to me in Neurotribes although I never read the book.
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#10

Postby davidbanner99@ » Tue Feb 02, 2021 10:17 pm

Dug this up. Second quote down. Silberman apparently made a lot of money from his book "Neurotribes". You notice in the review below that Silberman pointed out researchers were not fully understanding the subject they wrote about. I put it more bluntly. For a neurotypical clinician to genuinely understand the autistic mind I consider pretty much impossible. It took me years to understand the reverse side of the coin - how much normal individuals depend upon emotion when processing information.

"Eugen Bleuler (who in 1911 coined the word 'schizophrenia') once said that in the end his patients were stranger to him than the birds in his garden. But if they're strangers to us, what are we to them? (26)”

Silberman review:

"The narrative arc is roughly chronological, stretching across time and highlighting some of the Big Non-autistic Names in autism’s long, strange and often terrible trip: Hans Asperger, Leo Kanner, Bruno Bettelheim, Bernard Rimland, Ole Ivar Lovaas, Lorna Wing. Although some of these clinicians and researchers contributed critical insights about autism, they all brought their own psychological lenses to their work and interpretations, sometimes helpfully and sometimes to the terrible detriment of the people they thought they were helping."
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#11

Postby Richard@DecisionSkills » Tue Feb 02, 2021 10:22 pm

davidbanner99@ wrote:]You miss the whole meaning of my article.

(2)You disagree that 99.5 or so per cent of the research came to us from neurotypical researchers who studied children? Again fine. That is your opinion.


And you are missing the entire point of why I am asking you the question.

I do not disagree with you that 99% of research is conducted by neurotypicals and only 1% by those with autism.

I’m asking what percentage you believe it should be and apparently, for reasons unknown, you are unable to provide an answer.

It is an extremely simple question. Do you think it should be 50%, 15%, 5%, 2%?
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#12

Postby davidbanner99@ » Tue Feb 02, 2021 10:26 pm

I can promise a better book than Steve's. It won't be popular and it won't win me any reviews. However, it will dig a few holes through what has been assumed to be accurate for the last 50 years. And some of it will show how German scientists were fascinated by neurological deviation in information processing.

"Most persons are so absorbed in the contemplation of the outside world that they are wholly oblivious to what is passing on within themselves." Nikola Tesla
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#13

Postby davidbanner99@ » Tue Feb 02, 2021 10:31 pm

Richard@DecisionSkills wrote:
davidbanner99@ wrote:]You miss the whole meaning of my article.

(2)You disagree that 99.5 or so per cent of the research came to us from neurotypical researchers who studied children? Again fine. That is your opinion.


And you are missing the entire point of why I am asking you the question.

I do not disagree with you that 99% of research is conducted by neurotypicals and only 1% by those with autism.

I’m asking what percentage you believe it should be and apparently, for reasons unknown, you are unable to provide an answer.

It is an extremely simple question. Do you think it should be 50%, 15%, 5%, 2%?

50 per cent would give the widest perspective but you really should know why that can't be.
Answer: Because even the tiny minority of very gifted people like Nash or Perelman can't view themselves relative to others. And beyond that knowledge (and music) is socially transmitted.
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#14

Postby Richard@DecisionSkills » Tue Feb 02, 2021 11:04 pm

Ah, okay so in your opinion for a wide perspective 50% of autism research should conducted by those with autism. Implied in that is that a wider perspective = better results.

Why not make the case for over 50%? In your opinion would over 50% widen the perspective even more?

What about cancer research? Should 50% of research on cancer be conducted by those with cancer?

It is not important if it is possible. These are hypotheticals to help me understand how you think research works.
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