Asperger Syndrome Article, Philly Metro

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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

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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