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8/3/2019 Asperger Syndrome Article, Philly Metro
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THURSDAY. JUCT 5. 2001
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Th o m a s J e f f e r s o n 1 1 7 4 3 - 1 8 2 6 1 w asw i d e l y c o n s i d e r e d o n e o f the
s m a r t e s t o f th e F o u n d i n g F a t h e r s .as w e l l a s o n e o f t h e m o s t e n i g -m a t i c ; th e t i t l e of a r e c e n t b i o g r a -p h y d e s c r i b e d J e f f e r s o n as an" A m e r i c a n S p h i n x . " F or rw o c e n -
t u r i e s , w r i t e r s a n d h i s t o r i a n s h a v e u s e d; d o z e n s of a d j e c n v e s to d e s c r i b e J e f f e r s o n —, m u s i c i a n , f a r m e r , s u r v e y o r , i n v e n t o r , a r c h i -;
t e c t . l i n g u i s t . g o u r m a n d , d i p l o m a t - w h i l e; q u e s t i o n i n g th e t h i r d p r e s i d e n t ' s m a n y, g i a n n g i d i o s y n c r a s i e s :: - W h y d i d J e f f e r s o n t a k e o v e r 5 0 yean to[ c o m p l e t e h i s V i r g i n i a m a n s i o n . M o n t i c e i -i lo?
• W h a t a c c o u n t e d fo r h is p e c u l i a r i n t e r -
; pe rs onal be havi or - hi s c o l d g l a z e , his a w k -1 w ard body language,and h is u n k e m p t m a n -' n e r of dre s s — that l ef t m o s t of h i s c o n t e m -i poranes p u z z l e d ?
• H o w c o u l d J e f f e r s o n , a m e t i c u l o u sI b o o k k e e p e r w ho l o r d e d o v e r h i s f i n a n c i a li transactions, di e i n d e b t ?
• And wh y d id J e ffe rs on , as has been spec-t u l a t e d t h r o u g h w e l t - p u b l i c i z e d D N A t e s t -1 i n g , m a i n t a i n a secretive l o n g - t e r m a f f a i r' w i t h h i s f o r m e r sl a v e. S a l l y H e m m g s ?•" N o w . h i s t o n a n N o r m a n L e d g m u s e s a
n e w a d j e c t i v e t o c h a r a c t e r i z e J e f f e r s o n :au tist ic. Ledg m in " D i a g n o s i n g J e f f e r s o n "( p u b l i s h e d b y F u t u r e H o n z o n s I n c . ) h y p o t h -e s i z e s t h a t J e f f e r s o n s u f f e r e d f r o m As pe rg-e r ' s s y n d r o m e ( a l s o c a l l e d ASi . a f o r m ofh i g h - f u n c t i o n i n g a u t i s m f i r s t c l a ssi f i ed inth e 1 9 4 0 5 b ut o n l y n ow r e c e i v i n g p u b l i ca t t e n t i o n .
I J E D G I N I N S I S T S t h a t an A s p e n j e r1* di a g -
n o s i s w o u l d a c c o u n t f o r t h e s e l i n g e r i n g
q u e s t i o n s a b o u t J e f f e r s o n ." I w a n t ro set the re cord s t ra i ght an d dealwuh t h e a p p a r e n t c o n t r a d i c t i o n s , " ledgins a i d in a t e l e p h o n e i n t e r v i e w f r o m h isKans as h o m e . " E v e r y t h i n g is e x p l a i n a b l e byan A s p e r g e r ' s perspectiv e .*
A m o n g L e d g i n ' s a s s e r t i o n s :• J e f f e r s o n ' s obsession over M o n c i c e l l o
q u a l i f i e s a s a n o v e r r i d i n g s p e c i a l i n t e r e s t ,s o m e t h i n g m o s t A S p e o p l e h a v e . That th ec r e a t i o n a n d c o n s t r u c t i o n o f M o n t i c e i l ow o u l d cove r 54 ye ars of J e f f e r s o n ' s l i fe fromst a rt t o f i n i s h — a n d h e w a s u n w i l l i n g 'toa d m i t t h a t i t was e v er f i n i s h e d ' - isf a i r tes-t i m o n y t o M o n t i c e l l o ' s b e i n g c o n s id e r e d a ni n t e r e s t o f a b n o r m a l focus o r a n u n u s u a lf i x a t i o n . " L e U i j i n a d d s . " J e f f e r s o n ' s a r c h i -t e c t u r a l g o a l s s i m p l y o v e r r o d e s u c h pncti-
ca l c o n c e r n s as the m o n e y to be f o u n d to payfo r them."
• "J e ffe rs on 's re l at i ve l y stony -faced reservew a s a cl as s ic As pe rg e r ' s t ra i t ." Le dgi n writes .H e notes t h a t o n e c r i t e r i o n f o r A S i s a" m a r k e d i m p a i r m e n t i n t h e u se of m u l t i p l en o n v e r b a l b e h a v i o r s s u c h as e ye - to-e ye gaze ,facial e x p r e s s i o n , body pos ture s and g estu resto r e g u l a t e s o c i a l i n t e r a c t i o n . "
• A c c o r d i n g t o L e d g i n . m a n y A S p e o p l e .l i k e J e f f e r s o n , a r e " p e n n y - w i s e jn d p o u n d -
f o o l i s h . " J e f f e r s o n s h a b i t or w r i t i n g d o w ne ve ry t r i vi a l f i n a n c i a l t r a n s a c t i o n b l i n d e dh i m t o th e f a c t t h a t h e w a s s p e n d i n g s om u c h m o r e on M o n t i c e i l o .
• J e f f e r s o n ' s a p a t h y t o w a r d h o w t h e p u b -li c f e l t about h is r e l a t i o n s h i p w i t h H e m i n g sis a common t r a i t a m o n g A S p e o p l e . "W emust understand . . . how v ital to autistics ist h e q u a l i t y o f t h e i r s e l f - i s o l a t i o n ove r s oci a ld i s c o m f o r t s , a n d h o w e s s e n t i a l t h a t w i t h -d r a w a l becomes to e s cape pre s s ure s th e re s to f u s b n n g t o b e a r o n t h e m . " *
Le dgi n ha s received a c o l d s h o u l d e r f r o ms o m e h i s t o r i a n s , w h o f i n d hi s Jefferso n d i a g -n o s i s d u b i o u s . There's a lo t o f s k e p t i c i s man d a, m i s u n d e r s t a n d i n g of A s p e r g e r ' s an dh i g h - f u n c t i o n i n g a u t i s m . " L e d g i n sa ys, no t -in g t h a t p e o p l e o f t e n t h i n k a ll autistics ar e
i n s t i t u t i o n a l i z e d , l i k e D u s t i n H o f f m a n ' si di ot savant in the movie. "Rai n Man." The
w o r d " a u t i s m . " Ledg in says, " b r i n g s to m i n da h e l p l e s s i n d i v i d u a l i n c a p a b l e o f se lf -suf f i -ci e ncy. T h a t ' s n ot true of a spectrum d i s o r -d e r "
Fo r L e d g i n . writing a b o u t J e f f e r s o n w astr iggered b y a p e r s o n a l connection: H is t e e n -ag e s o n . F r e d , h a s A s p e r g e r ' s .
" W h e n m y s o n w a s d i a g n o s e d in 1 9 9 6 . "L e d g i n s a i d . " I b e g a n to r e a d a g r e a t d e a l
a b o u t AS .I
t r i e d to become a c q u a i n t e d w i t hal l th e e c c e n t r i c i t i e s a n d q u i r k s t h a t m i g h tf a l l o n t h e c o n t i n u u m . " O n e n i g h t , w h e nF r e d w e n t to bed wearing sweatpants. Lcdgi nas k e d h i m w h y h e d i d n ' t wear p a j a m a b o t -toms . "T he e l a s t i c w a i s t b a n d is b o t h e r i n gth e s k i n a r o u n d m y w ai s t ," Fre d r e p l i e d .
C O I N C I D E N T A L ! ? , L E D G I N w a s i n t h e m i d -d l e o f r e a d i n g a c o m p r e h e n s i v e b i o g r a p h yo f T h o m a s J e f f e r s o n . ' S o m » ! m a t e r i a l i nD u m a s M a l o n e ' s six -volume b i o g r a p h y of J e f -fe rs on said something a b o u t J e ffe rs on 's p r e f -erence f o r c o r d u r o y / s o f t d e n i m p a n t s . "I n d e e d , a c c o r d i n g to Asperger's e x p e r t T o n yA t r w o o d . people w i t h A S o f t e n h a v e great
s e n s i t i v i t y t o types of c l o t h i n g a g a i n s t t h e i rs k i n . (T he y m ay also have great i n s e n s i t m r y
8/3/2019 Asperger Syndrome Article, Philly Metro
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these truths to be self evident...
[*to temperature and choose to wear lightclothing during th e winter an d heavy cloth-
Ling during the summer.lAn intrigued Icdgin began w r i t i n g down
I s i m i l a r i t i e s between hi s son's be havi or an dI Jefferson's. "By the time I got to 50." he said.' "I though!I'd better examine this."
I ASPERGEH'S S Y N D R O M E w as f i rs t di ag-nosed during the 1940$. at about the same
! time that autism itself wasfirst recognized.
: In 1944. Viennese pediatricianHansAs pe rg-er diagnosed f o u r boys he treated as suf fe r -ingfrom what he called "autistic psychopa-
thy." While they behaved normally, they
I showed touches of autism — hey had obses-
sions with one or two subjects (Asperger
called his patients "little professors'l. they
had limited facial motion, motor skills,
I social skills an d general empathy. W i t h thehelp of a n u r s e , he developed an e d u c a t i o n -al program for thesechildren which includ-
I ed speech, drama and gym classes.Gi v en thatAspergerwrote inG e r-man duringWorld War fl. his
findings were largely for-gotten. But in 1981. a
year after hisdeath, aI British psychiatrist
I named LornaW i n g discoveredAsperger'sresearch andpublished a.—r • •
paper o n t h e ,.....'- -syndrome for
th e journal.Psychological
|Medicine.
D u r i n g the
I last f i v e years,several books havebeen p u b l i s h e dabout A S . BucksC o u n t y autism doctor
represent some sense of mastery over theunpre di ctabi l i ty of other people."
Y et obsessions among AS people come ata price. So h n says. "Any special interest can
b e c o m e an obsession w h e n it crosses th ethre s hol d of a l l - c o n s u m i n g , causes ithe ASc h i l d to be i upset when they cannot be
e ngage d in . replaced other activities in th eperson's repertoire."
Or as AS expert Fred V o l l m a r told Th e N ewYork Ti m es in 1999. "(Tlhe ke y point in their
diagnosis is that their obsessive behavior sig-ni f i c a nt l y impairs their soaal functioning."
JOSEPH UUD, a 22-y ear -old AS adult f ro mM o u n t V e r n o n . N.Y.. said. " M ay be the allegedlack of a social life helped me develop good
study habits." But often as a result of beingteased w hi l e growing up. those with Asperg-er's eventually discover that their intelligence
"/ think this is themost
extraordinary collectionof talent,of humanknowledge, thathas ever
been gathered togetherat theWhite House, with the possible
exception of when Thomas
Jefferson dinedalone."— President John F.Kennedy, welcominganaudience of
izarion would be quite be ne fi c i a l ." She runs aregularsenes of discussion groups for ,AS adults
on the Douglass c a m p u s , which focus on these
social skills.
SOHN DEFINES SOCIAL SKILLS as "all thereciprocal actions that involves communica-
t i on with others." including sharing, taking
turns and reading such social cues as body lan-
guage and voice inflection f W h e n is somebody
angry? surprised? embarrassed?!As a result of theircondition.AS adults often
f i n d starting and maintaining romantic rela-tionships very di ffi cul t . "I've seen couples t hat
have worked out their relationship just fine."
Oomanski said. " B ut it may not be an easy sit-uation fo r many A S (people). Difficulties with
empathizing, physical closeness, flexibility in
routines, etc.. may interfere with the ability to
get close, or let others get close."F i n d i n g su i t a bl e jobs can also be tncky.Sohn
said that, "generally speaking."A S adults are
"good for factual, solitary, researchjobs." Domanski adds, "those
™~ ™ (careerslthatarenotdependent
on excellent social skillsw o u l d probably b e most
successful. "I f the jobskills are most impor-
tant, as opposed tof i t t i n g i n s oci a l l y,
th e A S individual
m ay be of greatvalue."
L e d g i n hopes
to achieve twogoals with "Diag-n o s i n g J e f f e r -
son." "I want tos pre ad more i n f o r -
m a t i o n about
Asperger's an d h ig hf u n c t i o n i n g a u t i s m ,
a n d l e t people become
more i n f o r m e d on a con-
$£X?K̂of Nobel Prize winners to theWhite House, Apnl 1962.
i n t e r e s t : "There ar e many more1individualsw ho have t h i s condition:
it ha s captivated th e media'sa t t e n t i o n : par-| ent groups ar e much more i n v o l v e d : l a n d iI th e computer/Web ha s allowed fo r more
i n f o r m a t i o n t o b e a v a i l a bl e an d d i s s e m i n a t -ed."
F A M I L Y AN D CLASSMATESoften call chi l -dren with AS "walkingencyclopedias" or "lit-tle dictionaries." because of their c o m p r e -h e n s i v e knowledge o f o ft en arcane i n f o r -mation, and for the pedantic and detailed
w ay they talk about their obsessions. T h etopi cs AS people obsess over range from b usand train schedules, to lists of members of
'jgCongrea an d p r e s i d e n t s , to baseball statis-tics, toworld records.
David Roths chi l d, a 24-year-old withA Swh o l i v es i n N ew York City, grew u p d e v o u r -
Jng HardyBoys mystery novels. He suggested
on e explanation fo r h is obsessive reading:
"Socially. I had difficulty modeling my
behavior. I always thought I could f i nd a key
to human relationships i n o n e incredibly
f u n n y joke, or knowing more than anyone
else did.*Asperger's expert Oigby T antam made a
similar point in a recent essay: "Sizes of
cities, records, birthdays. 100-20 lists, waist
measurements — a ll numbers that m ypatients with AS have memorized — may allbe attempts to f i nd a powerful q u a nt i t a t i v eclue to society. For a person with AS. know-
ing the largest city or the tallest building
puts a bound on human endeavor and may
doesn't translate into intelligent socialskills.U p o n l e a r n i n g o f h e r d a u g h t e r ' s Asperg -
e r di agnos i s , author Liane Ho l i da y W i l l eyrealized that sh e herself h a d A S . (One s r u d yc o n c l u d e d t h a t o n e - t h i r d o f c h i l d r e n w i t hAs pe rge r s had at least one parent who al s oha d A S . ) S he wrote i n h e r memoir. "Pre-t e n d i n g to Be Normal." that h e r o w n child-
hood and adolescence did not prepare her
for t h e t r o u b l e s A S would cause outsideofthe class room:
"I ha d convinced mys e l f that m y high IQ.an d h i g h academic a c h i e v e m e n t record
m e a n t 1 w a s strong enough to handle what-
e ve r came m y way. "I wa s h it h a r d when Iha d to realize smarts were n ot enough tomak e i t i n this world. I w a s turned upside
d o w n w h e n 1 h a d t o admit I could no t f i nda n y o n e w h o s a w things like I did. I was crip-
pled when I f o u n d it took more than I had togive to m a k e n ew friends." I w a s n o t very
good at figuringpeople out. And so itseems,no one.was v ery good at figuring me out."
PE OPLE WITH AS OFTEN have difficul ty
u n d e r s t a n d i n g basic social situations. "M a nystudents with AS do not have academic d if -ficulties." according to Rochelle Domanski,
a coordinator of educational services at Rut-gers University's Douglass Developmental
DisabilitiesCenter. "Social skills training andproviding appropriate activities for social-
t h e o t h er s i de, i s l i m i t i n g s o m e peo-ple. It'ss o m e t h i n g w e don't know a l otabout." H e said that studying h i g h - fu nc t i o n-
in g a u t i s m m i g h t h e l p u s t o r e i n t e r p r e t o u rbasic u n d e r s t a n d i n g o f h u m a n i n t e l l i g e n c e .
"W h a t we m ay l i nd is that "The Bell C u r v e 's h o u l d n ' t applv. " lie said. re lL ' rnn i ; 10 C h a r l e sM u r r a y a n d K ic h a r d H e r r s t c m ' s c o n t r o v e r s i a l1995 bo o k l i n k i n g I Qs to race.
"At the hi gh end. w e m a y have a d i f f e r e n tclass of i n te l l i ge nce thanks t o t he a b n o r m a l i t y .If w e (ind t h a t g e n i u s is an a b n o r m a l i t y , w e cer-
tainly should stop measuring intelligence th ew a y w e used t o . W e m a y h a v e a totallyd i s t i n c tclass of intellect among us. because of this
( b r a i n l a b n o r m a l i t y . " Us i gi n s a i d.
ULLO TELLS PAREN TS o f AS children to relaxa b o u t t h e condition. "It's n ot your fa u l t . M ymother thought t h a t to o m a n y t i m e s d u r i n gmy childhood." Rothschild offers similaradvice:
"Seek whatever help y o u c a n with your child,
but understand that having A S is not a disease
— i t 's a fundamental part of their identity. Help
your child grow socially, but accept them fo rwho they are."
Le dgi n said the primary reason he wrote"Diagnosing J e f f e r s o n " was to give children
with AS some encouragement. "M y m am inter-
est is to provide y o u n g Asperger's people with
a role model.T he y've had role models, but they
never had a former president as one." Ledgin
hopes his f i n d i n g s will giveAS children "a rea-
son for hope and pride, and a faith in their
potential and hope fo r success."Maat Dy vwrew M*w
DIAGNOSTICCRITERIA
FOR ASPERGER'S
Here's a summary of one of themedical definitions of AS:OSM-iV definition of AsoergerSyndrome (called 'AsoergerDisorder")(APA. 1994)
Qualitative Impairment Insocial Interaction,asmanifestedby atleast two of the following•marked impairment in trie useof multiple nonverOal behaviorssuch as eye-to-eye gaze, facialexpression, Body postures, andgestures to regulate socialinteraction•failure to develop peerrelationshipsappropriate to
developmental level•a lack ofspontaneousseeking
to share enoyment, interests, orachievements with other people• ack of social or emotionalreciprocity
Restricted repetitiveandstereotyped patterns ofbehavior, interests,andactivities, as manifested by atleast one of the following:•encompassing preoccupationwitfi one or more stereotypedand restnctedpatterns of interestthat isabnormal either in
' intensity or focus•apparently inflexibleadherenceto specific, nonfunctionalroutines or nruals•stereotyped and repetitivemotor mannensms•persistent preoccupation withparts of objects
Th e disturbancecausesclinically significantimpairment insocial,occupational,or otherimportant areas of functioning
There is noclinicallysignificant generaldelay inlanguage(e.g.,single wordsusedby age 2, communicativephrases used by age 3)
There is noclinicallysignificant delay incognitivedevelopment or in thedevelopment of age-appropriateself-helpskills,adaptive behavior (other thanin social interaction),andcuriosityabout theenvironment in childhood
Criteria are not met foranother specific PervasiveDevelopmental Disorder orSchizophrenia.
— Andrew Milner