American Normal: The Hidden World of Asperger Syndrome

235 Pages·2002·3.407 MB·English

by  Lawrence Osborne (auth.)

AMERICAN NORMAL
AMERICAN NORMAL
the hidden world
of asperger syndrome
Lawrence Osborne
COPERNICUS BOOKS
An Imprint of Springer-Verlag
©2002Lawrence Osborne
All rights reserved.No part of this publication may be reproduced,stored in a
retrieval system,or transmitted,in any form or by any means,electronic,mechani-
cal,photocopying,recording,or otherwise,without the prior written permission of
the publisher.
Additional copyrighted material is cited in the Acknowledgments,on page 214,
which constitutes an extension of this copyright page.
Published in the United States by Copernicus Books,
an imprint of Springer-Verlag New York,Inc.
A member of BertelsmannSpringer Science+Business Media GmbH
Copernicus Books
37East7th Street
New York,NY10003
www.copernicusbooks.com
Library of Congress Cataloging-in-Publication Data
Osborne,Lawrence
American normal:the hidden world of Asperger syndrome / Lawrence Osborne.
p. cm.
Includes bibliographical references and index.
ISBN0-387-95307-8
1.Asperger syndrome. I.Title.
RC553.A88O83 2002
616.89’82—dc21 2002073782
Manufactured in the United States of America.
Printed on acid-free paper.
9 8 7 6 5 4 3 2 1
ISBN0-387-95307-8 SPIN 10839778
CONTENTS
preface vii
introduction ix
chapter 1: ASPERGER AND I 1
chapter 2: LITTLE PROFESSORS 37
chapter 3: THE LAST PURITAN 85
chapter 4: RAIN MEN 111
chapter 5: DIAGNOSING JEFFERSON 127
chapter 6: AUTIBIOGRAPHIES 151
chapter 7: THE POETICS OF MEDICINE 177
notes 205
bibliography 212
acknowledgments 214
index 215
preface
Hardly a month goes by without a new article or a television special
about Asperger Syndrome.We are told that it’s the fastest-growing
psychiatric condition among the children of Silicon Valley (where it’s
been called “the geek syndrome”);that tens of thousands of children
and adults suffer from it;and that the lofty Thomas Jefferson probably
had it,too.If people have heard of one psychiatric condition other than
schizophrenia,it’s often the subtlest form of autism known as Asperger
Syndrome, a sometimes poetic deformation of the mind that turns
people into solitary misfits but that also makes them virtuosos—some-
times of valued skills, but often of madly irrelevant obsessions.
Asperger Syndrome has become unexpectedly fashionable.More,it has
become perhaps the first desirablesyndrome of the twenty-first century:
a terrible burden, yes, but also a proof of eccentric intelligence, of
genius,even—and at the very least,of that increasingly rare commod-
ity,individuality.
Even the tiniest Asperger boy can often be a walking Encylopedia
Britannica entry on different species of cicadas,obscure clock-manufac-
turing companies,telephone cable insulating firms,the passenger list of
1921 1922
theTitanic,baseball trivia from ,say,to ,or the provincial capi-
tals of Brazil.In one documented case,a child memorized the addresses,
telephone numbers,and zip codes of every member of Congress,while
one family of a Long Island Asperger child had to make continual diver-
sions in order to visit the site of the TWAairline disaster.Another three-
year-old Asperger boy disassembled and reassembled a refrigerator
motor.Very amusing.But Asperger Syndrome also afflicts me with a
distinct unease:it remains so difficult so diagnose,so restlessly vague.
And,worse still,it strikes too close to home.
I find that,when I look at the matter closely,I am sure (or at least
half sure) that the symptoms of this now à la modesyndrome are already
familiar to me.Admittedly,I knew nothing when I was a child about
deep-fat friers,and even then I was stonily indifferent to the phone
numbers of politicians. But I did know all the tank designs used by
1941
General Guderian on the Eastern Front in ,and at the age of nine I
vii
viii lawrence osborne: AMERICAN NORMAL
knew by heart the complicated sex lives of all the characters in The
Odyssey.Was I mad?
As it happens,in the psychiatric Tower of Babel which America is
fast becoming,perhaps all of us can consider the case of the Asperger
loner with more than a slight misgiving.Who among us does not have
strange little compulsions and obsessions, which, while not exactly
awarding us membership in the Asperger’s club,certainly must give us
pause about our normality? Yet there is,of course,a great difficulty in
writing about psychiatry.I am not a psychiatrist and neither,most prob-
ably,are you.We wonder to ourselves if we even have the right to enter-
tain opinions concerning this intricate,not to say mystifying,science,if
indeed it is a science.But here’s the rub.The object of this science is our-
selves and our normality.That is to say,our basic nature.Do we actually
possess our normality,or (a distinctly less attractive possibility) does itin
fact possess us? About this,we can hardly fail to hold a view.
I would probably never have set out on a journey into the topsy-
turvy Land of Asperger’s if I hadn’t been tormented by this ominous
question,which of course has no obvious answer.All that exists is the
journey itself,which was conducted in the spirit of a merrily admitted
ignorance.After all,the experts have already spoken on this curious
subject,and what they have to say is widely available.What I wanted on
this voyage,this road trip,was to visit the places and people hidden,
often in plain sight:not just experts,or caregivers,or even just children,
but Asperger people (if they can be called that) living out their very
lives.What I wanted,in short,was merely to let a journey speak for
itself.The characters met on the way,after all,were not psychiatric odd-
ities,dark goblins inhabiting the infamous Diagnostic Manual,but only
varyingly intense and wayward variations of myself.
introduction
The maps of Asperger Syndrome have been drawn and redrawn over
fifty years,but the borders remain maddeningly vague.
The disorder, sometimes called a form of “high-functioning
autism,”was first pointed out by,then named after the Viennese psy-
1944
chiatrist Hans Asperger in . The phrase “high-functioning” is
meant to distinguish Asperger’s from classical autism—the latter con-
dition is typically characterized by much more obvious deficits in
speech,intelligence,and development.Asperger’s sufferers,in contrast,
appear largely normal.Or almost normal.They can function intellectu-
ally at a high level and can,more or less,blend into the general popula-
tion.Nonetheless,whether Asperger’s is or is not on a continuum with
autism (the issue is not resolved),it most assuredly can be what the dis-
tinguished researcher and writer Uta Frith has called “a devastating
handicap.”In the United States,the syndrome was only made “official”
with its entry into the fourth edition of the American Psychiatric
Association’s Diagnostic and Statistical Manual of Mental Disorders
1994
(DSM-IV) in .
What,then,is a reasonable definition? Perhaps the most workable
one I’ve encountered is from researchers and writers at the Yale Child
Study Center:
Paucity of empathy;naive,inappropriate,one-sided social interaction,
little ability to form friendships and consequent social isolation;
pedantic and monotonic speech;poor nonverbal communication;
intense absorption in circumscribed topics such as the weather,facts
aboutTVstations,railway timetables or maps,which are learned by
rote fashion and reflect poor understanding,conveying the impression
of eccentricity;and clumsy and ill-coordinated movements and odd
posture.
The most workable,but still unsatisfying.Through these clumsy
and ill-coordinated clouds of psychiatric prose,one glimpses a unique
condition. Asperger people are not idiot savants like Rain Man or
head-banging mental patients rocking in their chairs and screaming;
ix
x lawrence osborne: AMERICAN NORMAL
they do not conform in any way to the clichés roused in us by the word
“autistic.” Instead, the cognitive disability appears to be purely, or
almost purely, social. Essentially, for reasons that are completely
unknown,Asperger people cannot read the human face or its emotions.
They cannot learn social rules,nuances,or metaphors.Often brilliant
intellectually,they cannot read the simplest social cue or hint:instead,
rigid obsessions,often numerical,dominate their inner life.And they
live with the affliction for the whole of their lives.
★
It’s a curious fact that a great many people in the U.S.who have Asper-
ger Syndrome are self-diagnosed.As the number of people designated
as being on the autistic spectrum rises,I have the feeling that thousands
of people like myself are re-examining their childhoods with a certain
anxiety,but not without a certain relish as well.Every tic they have ever
had is now suspect,a sign of something systemic and previously con-
cealed.A century of widespread psychology and psychologizing has
made this apprehensive mind-set respectable.Eccentricity itself is less
and less accepted as an innocent aberration,a potentially fruitful quirk
of character,for the question of normality imposes itself constantly.Did
you play the lute when you were a boy,or not? Didyou line up your toys
in rows or spin on your heels imitating a propeller for hours on end? In
a culture defined by obsessive navel-gazing,we have taken to using our
navels as medical crystal balls.What disorder do we have? What form
of autism do we think we have,however slight and superficial? And,
most importantly,which section or subsection of the Diagnostic Manual
do we fit into?
Characteristically,people often now describe themselves as having
“Aspergerish traits”without actually going so far as to call themselves
autistic.Having Aspergerish traits is today one of the most fashionable
self-diagnoses in America, while autism is still a dread word. For
Asperger people have a reputation for cleverness,subtlety,and even for
genius.Einstein is now frequently claimed as an Asperger’s genius,as
1996
are the pianist Glenn Gould and the composer Béla Bartók.In ,
Time magazine even ran a piece entitled “Diagnosing Bill Gates,”in
which the nabob of Microsoft was roundly defined as a classic
Asperger’s type.If the richest man in the world has Asperger’s,why not
introduction xi
you? Asperger Syndrome is indeed,as autism researcher Uta Frith puts
it, “the first plausible variant to crystallize out of the autism spec-
trum”—and perhaps only the first of many.But where should we place
the emphasis—on “variant” or “autism”? Clearly, Asperger’s stands
apart from autism in general,and it is no wonder the parents of so many
brilliant middle-class Asperger boys grow abusive at the very mention
of the word “autistic.”For them,Asperger’s is an asset,not what the
Greeks called a fate.
★
For years,psychologists argued over whether the mental derailments
observable in autistic children occurred because of disturbed parenting
and a hostile environment,or because of in-built neurological disorders.
The great psychoanalyst Bruno Bettelheim was the most noted propo-
nent of the former idea and is accordingly reviled by parental activist
groups and especially Asperger’s support cells all over America.Indeed,
even so much as mention the word “Bettelheim” at conferences and
seminars devoted to Asperger’s and you will immediately hear a
murmur of scandalized disapproval.
In latter decades,the biological model has come to triumph in the
domains of professional expertise, especially after the publication of
1960
Bernard Rimland’s work on autism in the s.In fact,not only Asperger
Syndrome but virtually every developmental disorder is now seen as bio-
logical and genetic in origin.As Arthur Kleinman of the Harvard Medical
School has written,“Biology has cachet with psychiatrists.”
This vast and thorny debate cannot really be explored here,but it’s
apposite to remember that nothing is as simple as it looks. Richard
DeGrandpre, author of Ritalin Nation, makes this comment about
Attention Deficit Disorder, another affliction that is increasingly
explained in terms of biology:
More than anything,ADDrepresents a growing prejudice in our
culture—led in large part by the powerful influence of psychiatry
professionals and pharmaceutical companies—which is that
personality and behavioral traits are inborn and biological.