Psychiatric professionals don't like the diagnostic criteria for Asperger's Disorder. It's too vague and imprecise, and I can't say as I blame them. The diagnostic criteria are extremely subjective, and make it difficult to assess. To remedy this, a new diagnosis, according to discussions on various related Internet groups, with a more comprehensive set of diagnostic criteria, is under development.
Called Crypto Sensitivity Syndrome (CSS), the criteria currently under development is nearly 9 pages long, and covers observations of social interactions, sameness or reactivity to change, abilities, communication, usage of language, appearance, the five senses, and visual and spatial capabilities. For somebody versed in Asperger's Disorder, and particularly for those of us who have Asperger's Disorder, the new diagnostic criteria makes a lot of sense. But the question is, why change?
Why discard Asperger's? The history of Hans
Asperger's Disorder is named after Hans Asperger, an Austrian pediatrician who, in 1943, published a paper describing Autism, and then, in 1944, a paper about what was later to be called Asperger's Disorder. At the same time, Leo Kanner, an American psychiatrist who immigrated from Austria, published a paper describing Early Infantile Autism, sometimes also referred to as Kanner's Syndrome. Published in English, Kanner's work received wide-spread recognition, while Asperger's works, published in German, were largely ignored until 1981, and was not published in the Diagnostic and Statistical Manual of Mental Disorders (DSM) until 1994. (Source: Ontario Adult Autism Research and Support Network.)
Although there are key physiological differences between the brains of people with Autism and those of us with Asperger's Disorder, at this time diagnosis is made on the basis of observable behaviors, and in this respect the two differ, according to the Asperger's Disorder Homepage, in eight ways:
- onset is usually later
- outcome is usually more positive
- social and communication deficits are less severe
- circumscribed interests are more prominent
- verbal IQ is usually higher than performance IQ (in autism, the case is usually the reverse)
- clumsiness is more frequently seen
- family history is more frequently positive
- neurological disorders are less common
It was reasonable, ten years ago, to employ vague criteria, but as the statistical data on traits increases, it makes sense to refine and expand the criteria. But the new diagnosis, which isn't official, yet, is so broad - the list of diagnostic criteria is huge - that you have to wonder if it can be used to diagnose just about anybody with the new disorder. Additionally, one problem is that the criteria are written from the perspective of an outside observer, and as such suffers from a perspective deficit, or lack of insight into the nature of some of the traits. So, for example, as others have noted the criteria are stated in negative terms even though they could, as easily, be stated in positive terms.
The Discovery of "Aspie" Criteria
In 1999, Tony Atwood, Ph.D. and Carol Gray created "The Discovery of 'Aspie' Criteria" as their answer to the question, "What if Asperger's Syndrome was defined by its strengths?" (The Discovery Criteria are available at Dr. Atwood's web site under the "Tony's Publications" link.) Atwood reasoned that Asperger's syndrome is defined by "how others respond," not by any actual and inherent flaws or weaknesses in the Aspie mind which, all other things being equal, would make us less able to survive.
How well can Aspies survive compared to normal people? We can test this with a hypothetical Survivor game: If we have two distinct groups, one comprised entirely of "normal" people, the other comprised entirely of Aspies, and set each group down on their own deserted island, who, at the end of ten years, will be better off as measured by standard of living? Arguably, the Aspie group would win.
During the past 60 years, the number of scientists, engineers, technologists, inventors and innovators observed to display the traits of Asperger's Disorder is disproportionately large relative to the general population. Extrapolating from historical data, we can conclude that many of the greatest minds in history, such as Isaac Newton and Albert Einstein, also had Asperger's Disorder. So within a few years of being stranded on their island, our group of Aspies will probably sort themselves into an argumentative but generally peaceable social organization built around a silicon-based economy.
Silicon? Does the beach have sand? Then silicon will be among the most plentiful of building materials with which to work, and a lot of survival technology can be created out of glass: greenhouses, houses, storm berms, pipes for plumbing, and more.
Meanwhile, what will our "normal" people do? If history is any indicator, if the Aspie island is nearby, then once our normal people develop a community with a minimum degree of comfort, they will focus most of their talent, tools and time on building canoes and organizing war parties to go raid and enslave the Aspies. However, if there are no nearby populations upon which they can prey, again if history is any predictor, they'll simple resort to squabbling amongst themselves over who gets to rule the dung heap.
Or maybe they'll develop a peaceable community, too; the point, however, is that, all other things being equal, history indicates that the Aspie group will not only survive, but thrive because we focus with such intensity on learning, understanding, creating, innovating and getting things done, rather than on complex social rules. And, with all due respect to you normal folk, complex social rules are, in reality, somewhat primitive.
Primitive or Disabled?
Complex social patterns exist among many animals and insects, from beehives to Meerkats. Yet Aspies are judged disordered by virtue of the fact that we are unable, in varying degrees, to engage in the complex and, largely, instinctual social behaviors typical of most people. We can, however, learn rules, and this, as I will suggest below, has profoundly political implications.
Returning, for the moment, to the question of survival, if an Aspie society is very well able to survive, then this raises the question, are Aspies really disabled? And it also brings us back to the limitations and problems of diagnostic criteria that are written from the perspective of "normal" people who see Asperger's, or CSS, as a pathology rather than a simple variation on the human template, if not a step forward in human evolution. Personally, I believe we are simply a variation, but, given the harshness with which modern society has treated us, it's easy to understand why some rebel against this with feelings of superiority.
Regardless of where we fit, in society, as I read through the list of CSS diagnostic criteria I felt the same frustration as with the criteria for Asperser's: they don't get it. It suffers from the same perspective deficit, being written by outsiders, who calculate our capabilities in terms of Everyman, the average Joe who is neither gifted nor disabled, but epitomizes normality in all its average glory.
For example, one of the items under the heading of Communication is, "Although not alone physically, is alone mentally." This is inaccurate. Perhaps for lower functioning, lower IQ individuals it is empirically true, but for higher functioning individuals it's just not the same. There is an invigorating energy in the buzz and bustle of people interacting; as an Aspie, I can sit surrounded by people, never once interacting directly with any of them, yet feeling deeply connected to all of them.
It used to be fun, approaching coworkers or co-members of clubs, striking up a conversation and surprising them with how much I knew about them. But many of you "normal folk" have a deep-seated, almost psychotic paranoia about familiar strangers, people you've seen, people whose name you know, but people with whom you have never conversed or socialized, and don't know, and some among you respond like a wild animal cornered in a cage, with dangerous panic. So, like most Aspies, I have learned to keep what I learn to myself. Hence, while it may appear that we Aspies are "not alone physically" but "alone mentally," the truth is that many, if not all Aspies are anything but "alone mentally."
Another example of the perspective deficit in the diagnostic criteria comes from the "Odd usage of language" category:
A more literal interpretation of questioning: e.g., if asked "Do you read? (for fun)" elicits a response of "Yes. (meaning, literally, the ability to read)" or "Do you read magazines?" elicits "No" even though hours per day may be spend "looking" at magazines (not actually literally "reading" them)
The problem isn't with the fact that Aspies interpret questioning literally, but with how normal people make assumptions in communication. These assumptions often cause misunderstandings, frequently with unhappy results: fighting, divorce, lawsuits, etc. Although Aspies suffer from this flaw, too, it seems to be less pervasive.
The Deafening Din
As that may be, we do, according to the diagnostic criteria, suffer from an inability to "judge the significance of subtle differences in another person's words or behavior, i.e. voice tone, facial expression, body English of others will be received with less accuracy, or no accuracy, of intended meaning." Or do we? I sometimes wonder if just the opposite might be true, that we are, in fact, far more sensitive than normal. But were this the case, then why would we appear to be otherwise? I think noise may have something to do with it.
Consider a person who has a very keen sense of hearing surrounded everywhere by people who are, by comparison, nearly deaf. To our person, they seem to shout, play music way too loud, and the din is deafening. So he plugs his ears or, if that isn't possible, withdraws into himself to escape the ear-piercing cacophony which, to everybody else, seems quiet and comfortable. They look at our person, who withdraws and gives little response to their yelling and noise, and judge him to be hard of hearing. In a similar sense, Aspies may be deafened by the din of emotions that constantly play across the features of the normal person's face. And because the price for reading the right meaning of the wrong message can be high, we withdraw.
Both as a child and as an adult, I have watched a multitude of miniature dramas dance across the faces of normal people. The question for each is, which convey the intended message, and which expose concealed thoughts - motives and emotions, plans and intentions - that they did not intend to reveal?
When she says, "Hi, Rod," do the soft tone of her voice and the untapered roundness of her eyes indicate wistful regret, perhaps even a hope that invites me to reach out to her, or does the sharp intake of breath, the folding in of her arms, the sudden, brief stoop in her posture and quickening pace indicate fear, a warning for me to step back? Or are the elements of both messages indicative of her own inner turmoil, which may more easily be resolved with the toss of a coin than by any action on my part?
Being an Aspie, I'm prone to misinterpret the true meaning subtly signaled by these observations, right? A normal person would instinctively understand and respond appropriately. Or would they? Hostile environment sexual harassment has become an industry based on the inability of people to read such signals.
What I believe to be the case, is that Aspies, more than most, accurately perceive the mix of messages and, because we are highly communicative and able to talk about everything there is, speak out with gusto and candor, only to be stung because, upon being exposed, "the lady doth protest too much."
Most folks don't like it and feel vulnerable when somebody sees subtleties in their body language that most others don't see; they get nervous when somebody fits together what they say today with something they said a month ago and expresses an insight into their motives that others would ordinarily miss, and they react with anger. But why, in our Liberal society, would this be a problem? We embrace diversity, welcome honesty, and prize sincerity and individuality. So what is there to fear, unless it is that, in our Liberal culture, the diversity we embrace goes only skin deep, honesty is a virtue best kept mute, and sincerity and individuality are prized more in artifice than in real life?
If these be true observations, then, as these are traits which run strong and deep in the Aspie psyche, it could be possible, may, in fact, well be, that CSS is less a personal disability than a consequence of these Liberal times.
Is Asperger's/CSS caused by Liberalism?
At first blush, this is a ridiculous assertion. And to some extent, I mean it to be. But not entirely, as a comparison of Liberalism and Conservatism reveals the latter to be conducive to a society in which an Aspie may thrive, while the former is conducive to a society in which an Aspie is more likely to be tormented and punished, pushed out and isolated, castigated for speech that is prohibited by unwritten rules, and snared like a panic-stricken rabbit in the ambiguous pitfalls of a culture rendered chaotic by the replacement of concrete codes of conduct with guidelines based on vague principles that shift and change with each passing year.
Aspies find "social taboos hard to understand," and for this reason our "behavior in public tends to stay exactly the same as behavior in private." It's true, and for good reason; most social taboos are cultural artifacts which, in modern times, serve little rational purpose. However, we can know and adhere to social taboos when they are made explicit as formal rules of conduct, as they are in Conservative society. In Liberal society, however, where we are expected to intuitively know them, those of us who don't are "disabled."
Similarly, our "ritually learned politeness may result in a faux pas or unintended insult to others," but only because in modern, Liberal society normal people consider politeness arrogant, while in Conservative society it is welcomed as a token of respect. Amongst ourselves, such rigid behavior is unnecessary for Aspies as we are inclined to call everybody, from the Queen of England to the janitor who cleans the toilet, by their first name, but because expectations can vary enormously between groups, tradition teaches us that the best policy is to behave politely. But Liberal society devalues tradition for the sake of progress; a progress which, ironically, was made possible by our traditions, in the first place. Go figure.
Tradition teaches that, while most people may and probably do have noble impulses which will, under certain circumstances, motivate them to do the right thing, generally speaking people will act to fulfill their impulsive desires first, and make excuses later. Conservatism recognizes this fact, and imposes limitations to keep these ignoble inclinations in check. In the face of everyday experience during rush hour traffic to the contrary, Liberalism, on the other hand, assumes people are ruled by their noble impulses, and, except when it comes to vilifying male sexuality, goes far afield to find excuses for any misbehavior. In a society dominated by Liberalism, Aspies, who tend to be "innocent, honest, guileless, na´ve," are at far greater risk than in a society dominated by Conservatism.
Jumping from Social Interaction to Abilities, Conservative culture teaches through rote and apprenticeship, which works well for normal people and best for Aspies, who "may have phenomenal rote memory for poems, names, product specifications, player statistics, etc." In Liberal culture, on the other hand, everybody wants a "fast learner," which erects a barrier to Aspies, whose "short term moment-to-moment, hour-to-hour memory is usually poor." (This, by the way, can be mitigated, in my experience, with a stimulant, such as ephedra, but thanks to the FDA and courtrooms that award insane settlements, ephedra is nearly impossible to get through reputable suppliers.)
In Liberal society, we are expected to equally "appreciate" all cultures, all religions, and all views, and being a dilettante is highly regarded, whereas in Conservative societies the tendency, common among Aspies, to have "isolated, restricted, or circumscribed areas of interest" is respected.
I could beat this to death, going down the list one item at a time and demonstrate how, in Liberal society, it is a "disability," while in Conservative society it would be, if not an ability, then at least not a disability. But that would be a better subject for a book, and one I would rather read than write.
So I hope my brief treatment here will at least serve to show there is a case to be made for how, in Conservative society, there would be little need for the Asperger's/CSS diagnosis, while in Liberal society it is a virtual necessity, and one of which I have become acutely aware this past year, as I have recovered from the clinical depression which has plagued me for most of my life.
To Hell and Back
These days, it's considered clever to claim (I don't alliterate on purpose, the words just come out that way) that everybody suffers through high school, that childhood is hell for all of us, and all children are afraid and troubled. That may be more than clever, it may be true. I don't know. What I do know is, for Aspies childhood is a time of violence. We are targets for bullying and beating by our peers, and punished by teachers who assume we are unmotivated students, rather than that their method of teaching, which doesn't work very well for normal children and not at all for us, is at fault. So, clinical depression is extremely common among Aspies.
I can just hear some of my favorite talk show hosts carping, "oh, poor baby, cry me a river!" Given my own experiences, it would be easy for me to agree.
At age 5 I was molested by a babysitter from across the street. Before age 7, the neighborhood bullies began taking me out into the woods after school, where they stripped and ridiculed me. Sometimes they ganged together and took turns beating me up. And sometimes they did both. Is school hell for everybody? Not, I think, like the hell we faced. Being Indian had something to do with it, as our teachers looked the other way, but it was for being different, for being Aspies, that our peers punished my brother, sister and me.
Clinical depression came for each of us, though their stories are theirs to tell. For my part, I struggled for decades to fit in and be part of normal society until, by the turn of the century I was binge drinking myself to death, dousing my depression in an alcoholic haze.
The psychiatrist who diagnosed me with Aspersers tried different antidepressants, but none worked. He prescribed therapy with a staff psychologist who works with Aspie kids in the local clinic, but finally the therapist "fired" me because he had no clue how to help me, and it frustrated him as much as me.
With my 50th birthday approaching, the prognosis wasn't promising. And then I stumbled across an article in the monthly magazine published by the Life Extension Foundation about S-adenosyl-methionine (SAMe), a nutrient which also treats depression and liver disorders. I decided to give it a try. Being overweight, I was also taking an ephedra diet aid from GNC (no longer available, thanks to the FDA and the outrageous settlements awarded by the legal system), and when I began taking SAMe in combination with the ephedra it snapped me out of my depression.
Could this have been a placebo effect?
Very doubtful. During the past 30 years, I've tried hundreds of things to alleviate the depression, and nothing worked. Maybe it's just me, or maybe it's common to all Aspies, but I'm simply not susceptible to placebos: magic sugar pills only give me a sugar high. The SAMe did what it does; I think the ephedra, which I find helpful for maintaining alertness and improving short term memory, simply facilitated the process.
As it happens, SAMe also mitigates hangovers and makes it harder to get drunk; before too long, I completely lost any compulsion to drink. It's gone. I walk by the beer coolers and wine racks and feel not the slightest need to get some.
As miraculous as this experience has been, ironically it has not been without consequences. Because, the Aspie in me is back in full force.
The ironic consequences of recovering from depression
Although I have a couple of college degrees and graduated with a decent GPA, and, thanks to working part-time jobs to pay my way through college, a lot of good experience, as is typical with Aspies, I've always had a hard time holding onto a job. Aside from dogging my way through 8 years of college, the only way I've ever accomplished anything of note has been through writing. Consequently, my "day job" is, again as is typical for Aspies, far less than what somebody with my skills, abilities, work ethic and experience, should hold.
You might think that overcoming my depression would open a lot of doors and make it easier to cope with the challenges. Stepping out of the protective alcoholic haze into the blinding hustle and deafening racket of our Liberal culture is both exhilarating and frightening. It is exhilarating to feel so alert, alive and energetic. Books, as hard to read and difficult to absorb last year as they were 25 years ago, now shout with meaning. Lethargy and apathy have given way to intention and hope.
Despite this, I am more challenged than ever by the ways of normal folk, so many of whom seem dimwitted, slow, uninteresting, motivated to do little more than plod to work in the morning, road rage back home in the evening, plop themselves in front of the TV and stuff food into their mechanically masticating maws while staring with a glassy-eyed gaze at the insipid and repetitious themes playing out over-and-over in their dull little melodramas.
However, some normal people are smart. Intelligent, motivated, and, not always but too often, devious, cunning, disloyal, back-stabbing climbers who seek dominance through deception or conquest rather than by any virtue of their own.
Between these two, I run the same gauntlet all Aspies do, a combat zone mitigated only by those people whose humanity rises as high as our own. For where the depression and alcoholic haze kept me more or less quiet and my head down below the level at which I would offend too much and draw fire, freed from these I now stride high and proud through the minefield of human emotion, where I am often surprised to find myself lobbing true and factual observations like grenades right where they will set off the severest repercussions. And, I have to laugh at myself, here, because there's nothing I can do about it.
Bluntly, I can't help myself. I can't. Out pop the words. "Whoa, who said that, where'd that come from! Me?" This is why, though I bristle at the words "disorder" and "syndrome," given the ill-disposed nature of the society in which we live, I nevertheless clutch them hard as the shields behind which we can hide until the day we bring this culture to embrace us for the value we add by virtue of our "disorder."
Until then, it's a struggle, but there are rewards. Others, whom I've recognized as fellow, albeit undiagnosed, Aspies, were, like so many of us, also withdrawn into their protective cocoons, but now as I have emerged with joy and passion, it seems to draw them out, too, and the exuberance with which they rejoice in the efflorescence of their Aspie nature is like a pile of presents all wrapped up in pretty paper for me.
Whether they say we have "Aspergers Disorder" or conclude our malady is "Crypto Sensitivity Syndrome," these things say more about them, I think, than about us. As for the new diagnosis, maybe being referred to as a Crypto Sensitive, or perhaps a Crypto, will be better than being called an Aspie, but I have to wonder, will we be characterized as a Gang of Geeks, and expected to wear a bandana with the Microsoft logo to distinguish us from the Crips?
That was a joke.