Saturday, January 3, 2009

Speaking of the Mad

To be honest with you, neither the Thin Man nor I had intended to repost things that were already on the main website but we've been persuaded otherwise. We both agreed, if we were going to repost anything, then first and foremost should be the essay that is the very reason this weblog is entitled as it is. Some of you have seen this before and I hope you'll forgive the redundancy but, in the interest of getting it in front of the most eyes as possible:

On Autism and Society

One begins a circle drawing anywhere, especially if one is Asbergian. I must approach this subject by stalking it, circuitously tacking toward a central point that is not, in fact, a point but rather a hedge of possible relations. I will most likely say as many things that are wrong as I do things that are correct because, without permission to fail, no progress can be made. I speak from a broad foundation of knowledge, personal experience, and research. In order to provide examples, I have chosen to reference a New York Times Magazine article by Emily Bazelon ("What Are Autistic Girls Made of?" NYTM 08/05/2007). It is not the only source for the information I discuss, but it is representative of the current state of research and it is easily accessible.

Much of what I present is drawn from anecdotal evidence. There is a widespread fallacy in scientific circles that "anecdotal evidence is no evidence at all"; that the experiences and observations of one individual are not sufficient data to draw conclusions from. Setting aside that these specific anecdotes in question are representative observations, the root premise — that "anecdotal evidence is no evidence at all" — is a flawed one and its frequent invocation is a detriment to science and the increase of knowledge. At its root, all evidence is anecdotal. Even if I acquire empirical results from a bank of analytical machinery, my record of these results, my calculations, and my eventual conclusions are, in point of fact, anecdotal. All things are filtered through a singular observer. Finally, all evidence is anecdotal.

For my own part, I was diagnosed late in life with a host of mental "deficiencies", all of which may be lumped into a single category of "the boy ain't like us." I am non-neurotypical — crazy if you will. That's really all any mental "disorder" is: non-neurotypical, not like the rest of us. Further labeling is pejorative and facile. As I said, I was diagnosed late in life; every person who had known me previously responded, "So, you're the same as you've always been, but now it's official." If I were a child today, I would be caught, tranquilized, and relocated a safe distance from the "good" people. Instead, I grew up among people, not unlike myself, who accommodated my idiosyncrasies (this was a time when eccentricity was quaint rather than threatening). In the meantime, I learned to mimic the average human and do a credible impression for short periods of time.

I would add to this one further personal note. Once I could no longer maintain the mask and was forced, by the cost to my personal health, to retire from the field, I found within the government — within the institutions so publicly dedicated to "serving" the differently-abled and so vocally the defendants of the downtrodden — the highest levels of discrimination and harassment I have ever faced. At times, the situation came to resemble Camus' The Stranger as I was punished by the system for not properly cringing and bowing, for not giving up and dying quietly. There are decent people within the system, but the overarching bureaucracy itself is a condescending evil.

As a society, we still relegate our insane to asylums. Only now, the walls are invisible and the padding is around those who must deal with us, to protect them from us, an insidious imprisonment of arbitrary regulations, a subtle prejudice cloaked in platitudes of compassion. Because they are afraid of us.

To clarify terms, autism is now defined as social and communication impairments and restricted interests. Allow me to present this definition as it is seen from the other side of the mirror: doesn't tolerate inanity or stupidity well, speaks directly, and doesn't give a damn what was on SNL last night because there are more important things.

Autism now includes Asberger's syndrome, considering it high-functioning autism. As the study of mental abnormality expands, it is increasingly common for one disorder to "swallow" another in this manner. It is my own studied opinion (and I am not alone in this), that most mental abnormalities are simply variations on a theme. There is a continuum of behaviors and functionalities all sliding and blurring into each other and only severity separates one "disorder" from another. Further, the mental state of every human being exists on this continuum and that the normal and sane have the same potentials and traits as the abnormal, simply less pronounced. If you need further proof, I ask you to consider the societal virtue called logical thought. It is defined as the ability to consider a situation or problem objectively rather than subjectively, to separate one's personal interests from the situation. Psychology also has a term that matches this definition: dissociative thinking, the first symptom of schizoid behavior.

In the specific case of autism, researchers are quick to point out that autistics, especially female patients, suffer from tremendous levels of anxiety and depression. It is currently their belief that the anxiety and depression arise from the situations created by the necessary lifestyles of the autistic. Personally, I think they overcomplicate the matter. Autism and bipolar disorder are both stops on the mental continuum; to attempt to divide them into two separate disorders based on cause and effect is pure sophistry. More troubling, it is counterproductive.

Let the hunt begin. Observe the trail signs.

""All I require is a purple marker," the boy said over and over again, refusing to write with the black marker he had been given."

A small track indicating a huge beast. If you, as a researcher, are preparing to perform a study involving autistic patients, is it unreasonable to expect this kind of simple resistance? Of course not. This kind of action is so common, a researcher should be surprised if it doesn't occur in a sample population. Yet, to me, there is an even brighter warning flag waving, an obvious question that strikes to the core of the matter. What is so important about the color of marker the patient uses that the doctors must bring the entire proceeding to a halt until this single individual is forced to conform to their arbitrary decision? Why not give him a purple marker? Why must the doctors establish such trivial dominance, like dogs squabbling for pack supremacy? For an autistic patient, this small measure of situational control is paramount to his comfort and his ability to continue to function in the environment; he needs to maintain some level of control and has chosen to express it in what is, ultimately, a very reasonable request. He is neither disruptive not demonstrative, merely resistant. This kind of irrational power struggle on the part of the normals is common, bordering on systemic, in the handling of non-neurotypicals. Why? Is there an unacknowledged psychosis common to doctors, a kind of deity-complex megalomania, or is it something more widespread?

"...they [girls] often fare better than boys at an early age because they tend to be less disruptive."

The question begs itself: do the autistic girls fare better or do the normals around them fare better because the autistic does not intrude on them? Yet, that question is never asked, never investigated. It is a problem that the autistic faces throughout society. Docility is confused with success. Culturally, we are conditioned to the thoughtless rigors of classroom passivity to prepare us for the drone mechanics of the industrial world. Indeed, a quick perusal of the writings of Horace Mann, founder of the modern educational system, makes it clear that the entire purpose of the system is not, in fact, to educate the student but to prepare the student to accept their place within the social strata and industrial mechanism without thought or question. The autistic, by their very nature challenges — must challenge — this basic presumption. By definition, they are not satisfied with social minutia or polite small talk. They are driven to focus on those matters that interest them. In generations past, these traits were used to define geniuses and future leaders, not mental disorders. It is reasonable to speculate that, perhaps, the climbing numbers of autistic diagnoses is due, not to an actual increase in mental abnormalities, but to a change to the cultural fabric. The societal bar has been lowered and, when the autistic refuses to lower themselves, they are marginalized.

"A psychology professor and director of the Autism Research Centre at Cambridge University, Baron-Cohen has characterized autism as a condition of the 'extreme male brain.' His research shows that in the general population men are more likely than women to score low on a test of empathy and high on a test of recognizing rules and patterns, or 'systemizing.' High systemizing together with low empathy correlates with social and communications deficits and, at the extreme end of the scale, with autism...Baron-Cohen says that he believes that autistic girls are strong systemizers. That quality may manifest itself in letters rather than numbers."

Baron-Cohen may be the leading autism researcher of our generation. In this, I find great hope for the future. Although it may not be politically correct to call autism "extreme male brain", I believe he is correct. It is frequently noted that autistic males have an obsession with numbers, music, and similar "arcane" knowledge. It has also been noted that Asbergian females are some of the leading readers and writers of fantasy and fan fiction.

I would add to this body of evidence my own experiences with other authors and readers, especially women. Accepting the terminology of masculine for traits such as patterning and feminine for traits like empathy, Baron-Cohen's observations are, in hindsight, almost intuitively obvious. I fear that his work will be obscured by rhetoric because of phantom perceptions of sexism; but I wonder how many women among my own fellow writers and readers recognized themselves in his definition. Given the historic predisposition of authors to mental illness (or vice versa), I believe this aspect of his research lends itself not only to a better understanding of autism but also a greater understanding of literature and especially the current state of fantasy literature and children's literacy. In this culture of specialization however, I fear this will never be explored, unless by a fellow non-neurotypical.

I would like to take a moment to address the contention that autistics have communication difficulties. This is a sweeping generalization based on definitions created by normals. Most autistics (depending on severity) do communicate. What they do not do is communicate trivially. A request for permission to an autistic that is not met with dissent is permission; they see no need for wasteful pleasantries. A statement that does not require a direct response will not receive one. That does not mean the autistic did not hear or care, they just have no need to respond. Of course, the "difficulties socializing" are co-morbid with this minimalistic communication.

Let me say that I have, of necessity, made sweeping generalizations regarding the condition of autism. I understand and acknowledge that each case is different, that the level of functional severity alters the situation significantly. Primarily, my focus has been on high-functioning autism or Asberger's Syndrome. I humbly admit that I am not an expert on this situation, merely a participant, and apologize in advance if I have offended anyone or seemed insensitive to any specific circumstance.

I believe I speak for many non-neurotypicals when I say that I do not want "cured". I am not a ham or a side of bacon. There is nothing wrong with me. There is only wrongness as it relates to our interaction with mainstream round-peg culture. Rather, I wish to be understood and accepted as I am. If this is not possible, which I suspect it is not, I wish the society of normals to permit the necessary accommodations for my people to live among you. We cannot go to your schools (I suspect that you should not go to them either) and we cannot conform to your nine-to-five cages. This does not make us less, only different.

All I require is a purple marker.

Originally posted:

1 comment:

Starbuck O'Shea said...

"We cannot go to your schools (I suspect that you should not go to them either) and we cannot conform to your nine-to-five cages. This does not make us less, only different."


Speaking as a bipolar, oh, yes. I remember when I was first sick. Every time I did something others disliked, you could just SEE the murky thought of "Is she sick again?" Already had a box for me.

No, I wasn't guessing; I also got that response verbally. A lot.