Marginalised Researchers In Neurology

(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.