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Roger N. Meyer "...of a different mind "
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THOSE WHO DEFINE US, CONFINE US, AND CONFOUND US

Labeling and the Labelers

Roger N. Meyer

Copyright 1998

All Rights Reserved

 

 

     [This article is a response to a number of posts on the topic of labeling and the labelers on the Autism Network International listserv.  It was written at the same time I  was co-authoring an article with Michael Ward, Ph.D., on self-determination published the following year in Focus on Autism and Other Developmental Disabilities.]

 

      "High Functioning," Asperger Syndrome," Non-Verbal Learning Disorder."  I am just as confused as many of you.  Frankly, when it comes to getting services for our kids, except in the case of gross mislabeling, it really doesn't make any difference what the distinction is.  What does make a difference is what we do with the label.  If we know how important one label may be as opposed to another later on in life, maybe our choices early on would be easier to make.

 

     Ever since Lorna Wing wrote her brief (15 page) article in 1981 when she gave a name to what Hans Asperger described, there has been non-stop argument about the difference (if any) between HFA and AS.  The problem seems to be that there is no consensus in the medical profession.  There also appears to be no meeting of minds in any of the other," softer" professions about the meaning of either term.  And, inevitably, we not only get caught in the battle, but perpetuate it ourselves.  In a real sense, by buying into a situation where there is a perpetual shell game, where the rules (definitions) can't be pinned down, where the referees themselves are in utter disagreement, what else can one expect?

 

     Certainly, not clarity.

 

     That's really not a surprise.  As long as others control the words and labels used to "describe" us, we'll be dependent on others to tell us who we are.  And since they're not on the spectrum, just guess how much of a clue any of them have?

 

     I've struggled with the differences only among those informed enough about autism to know what  they are talking about, and in this area, believe me, there is no agreement at all.  Edward Ritvo, in co-authoring the DSM-IV definition of AS presented the world with about as confusing a set of criteria as one could imagine.  They read like a bad set of instructions in Japanese for putting together a skyscraper.  The criteria themselves are internally contradictory and tautological.  With continuation of the debate five years after the DSM-IV, it seems no amount of tinkering at the edge has resolved inherent semantic and conceptual conflict built into the categories.  Ritvo, speaking privately, but constantly, suggests he is aghast at the results of his contribution.  While there is a "word" for some type of high functioning autism different than Kanner's autism, he wishes there would be simplicity and consensus in an area where the confusion and bickering abounds.  He wishes people would continue on with their work of helping those so labeled, rather than arguing about "the address."

 

     Diagnosis for "this" truly is more art than science, and if you happen to catch one of the big cheeses out there who actually diagnoses people rather than just  jawbones about them, they'll tell you that a lot of the practice of diagnosis has to do with subtleties and observations that cannot be reduced to cook-book language.  This really is where the dilemma lies, because we have NT's trying to understand (or at least they say they try) persons who speak a different conceptual language and perceive life through different lenses.  Prescriptions for visual correction can be made for infants through the opometrist's observations of "back of eye" reactions to lenses.  Thus, it is possible to do visual correction work for those who can't speak or otherwise communicate, and the results are pretty good.  The eye itself will disclose how close to "normal" the correction is.  The observer is on the outside.  The observer is literally able to "look inside."

 

     This just isn't possible for our brains. The connections are too complex.  The number of windows one uses to peek inside are infinite, and the phenomenon they observe is characterized by fluidity, not static.  You can take all the CAT scans and PET images you want,  but of what use are they in assisting those photographed?  I'd say, often very little. It is a frozen picture, a snapshot in time, not a statement of "being."

 

     I suggest the only time we should accurately "identify" another person is when they "stop moving" and the person is no longer changing.  In other words, when they are dead.  At least they wouldn't be around to confound us, and confuse us with all of their quirkiness as persons living their lives as everyone lives their lives: in flux.  We know one another by our interactions, not by what can be captured in a single moment, somewhat as we see insects captured in a moment, encased in amber.

 

     (Further, I ask by what right do they or any others claim interest in doing anything to "fix"  what they  observe?  That question, of course, starts an altogether different argument.)

 

     The brain is a "thing" for sure, but more importantly, it is a "process."  In young children, connections and the very process itself remains  in a constant state of motion, changing and shifting as the brain develops. Even in adults who keep learning and keep  their brains active, healthy, and stimulated, the brain continues this magic dance.

 

     Brain experts are like scientists paddling about at the base of Niagara Falls studying the pattern of constantly changing, falling water.  All they can do is try to catch some drops.  And then what do they really have?  They can't stop the flow, nor can they even much control bobbing and weaving of their boats.  Most of all, is it meaningful for them to ask WHY the boat bobs or the water falls if better questions could lead to understanding -- the very  process in which they play such an important part.  And you think that "merely observing" others is easy?  How indeed can we ask people to be "truly objective" if their very interaction with us is the basis upon which much of the diagnosis is based?

 

     People who diagnose us are used to seeing people who are in doubt, people who are in a state of physical or mental anguish.  These professionals are not experts in "the normal."  "Normal" people don't consult them, so it really is true that their subjects, their patients, are a rather select few of us.  After all, most adults who are relatively high functioning are and most likely will remain undiagnosed.

 

     What's in a Word?

 

     I don't think it matters how many people agree when they  "define" us.  What goes on in evaluation is that consensus builds from the observations of different persons, each taken from a different vantage point.  Experts often arrive at a perfect agreement, yet their evaluation often makes no sense.  In the process of deciding about another person, they often spend far too much time concentrating on "their" point, and massaging one another's' egos than directing all that energy to the object of their work.  They are in charge of the situation, and, by extension, in charge of the "words" which they coin or use to define people in accordance with largely unchallenged presumptions and prejudices borne through centuries of ignorance.  They are in charge of the situation because society has agreed that they should be in charge. Just whose interest is preserved when this entire whole process is obscured by centuries of deference, passivity, role definition by one group with and acceptance by others, and  millennia of social ranking?  Animals rank themselves in roughly the same manner as we do.  With them, it is possible to observe not only how blatant is the behavior, but also how subtly, overall, the order of things is maintained.  Although we can't "read their minds,"  it may be easier to infer their thoughts through long-term, patient observation; perhaps by even living among them.  Just how much time do the experts spend studying us before arriving at their judgments?

 

     Since we're literally "in the midst of things" most of the time, it is hard, if not impossible, to draw back sufficiently to take in the whole picture.  Those who do that, like the child before the naked emperor, say the truth much to the disdain of those working hard to make things appear otherwise.  So, even in the best of worlds, we have this dance going on about us.  We dance into their offices.  They dance about us, but rarely dance "with us."

 

     Unfortunately, few people ask us how we like the music or whether we'd like to dance.

 

     Even if "they get it right" whenever folks do the brain poking or the second guessing bit with us, they must rely on OUR reports as to whether or not there is success, whether they are on the right path.  Indeed, whether they have struck the right chord. 

 

     If they are there for "therapy," stroke and TBI victims may not realize the extent to which they do improve as a result of therapy, since in many cases, they cannot process their progress.  The accident or stroke has left them without important parts of their memory, and memory is critical to how we define ourselves.  They must often be reassured by others who knew them "as they were" before their stroke or their accident.  They may not believe the person who is treating them, because that person doesn't know their history in the same way others who were a part of their lives and continue to remain a part of their lives truly are.

 

     Even when therapy or rehabilitation is 100% successful, one need only ask "In whose opinion?"  If the patient does not internalize or "own" the recovery, he walks about the rest of his life feeling the same sense of loss as first experienced when the trauma or stroke occurred.  Much of the work of therapists working with these folks lies in efforts to convince their clients of that success that they see as observers.  They bring in family, they bring in videos.  They bring in the sights and smells and sensations from a time past. And sometimes that works.

 

     Because we are born with brains differently wired, we experience things differently than those right next to us.  We have a different take on things.  Our logic, our memories, and how we use our personal history is what makes us a puzzle to others.  We are also puzzles to ourselves.  Unlike TBI or stroke victims who were in tune with those with whom they danced in their pre-event lives, we don't even have picture books and memorabilia to convince ourselves there "was another time" or that it was the same as others experienced it, or us.

 

     No, most "experts" don't have a clue.  We wish they did.  Those who seem to understand are standouts in one important way:  they are respectful.  They listen.  The ones who do understand rely on us, not their peers, to validate their opinions.

 

 

Copyright Issues

 

This article is copyright, all rights reserved by the author, Roger N. Meyer.  It may be reproduced in single copy once for personal use, and in no more than ten copies total for educational purposes.  Fair Use is authorized for all purposes and under conditions established by US Statute and the International Copyright Convention, to which the United States is a signatory nation.  No person shall publish, distribute, copy, or by other means make this material available to others for purposes of personal gain or professional self-aggrandizement.  Individuals wishing permission to exercise other than fair use or limited distribution as outlined above must contact the author, in writing, and receive explicit written permission from the author prior to engaging in further use of this material.

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